A World Away

Hello Floor. Meet Nose.

2009-06-22T11:33:00.004-04:00

Life with boys is interesting at best and frustrating at worst. Boys are rough, tough, and very active. I'm finding it not easy to relate to their little world. The bright spot is, having a little brother when you have autism is a blessing. Casey will not give up on his older brother when it comes to playing. He adapts to Wes' playing habits and that's not always a good thing.

It was a busy morning Saturday. We were planning on trying to get rid of some old stuff in a yard sale. That didn't go so well. While we were cleaning up, Casey was trying to get in his brothers face and Wes was not happy. He shoved Casey hard and Casey's poor little face met the hardwood floor hard. He immediately started screaming which was a good sign. I scooped him up and noticed his little nose was already showing signs of swelling and broken blood vessels. It was slightly bleeding, but not gushing. Off to Urgent Care we go!

We had no time to prep Wes for what was happening so I should have known what was ahead of us. He was MAD! He threw a huge meltdown outside while Tim was trying to get him out of the car. Meanwhile, I was running in with Casey who seemed too calm for someone who smashed his nose on the floor.

Two and a half hours later and about 4 meltdowns, no broken nose. Just very badly bruised. My poor little man. Do you think that he learned his lesson? Nope. While in the waiting room, he started on his brother, nearly hitting his face again.

When parent's have boys, you should be able to keep a running tab at the Emergency room.

It's been too long

2009-06-22T11:19:00.002-04:00

Wow, I've certainly neglected this blog. It wasn't my intention, but you know how life can be. You get so caught up that you forget the little things.

Life has been eventful in the last couple months, I'm not sure where to start..

The milk free diet has been going well. It's still in the infancy stage in terms of finding foods that not only he will eat, but that are dairy free too. Sometimes, when planning meals for the week, we forget to check our normal menus to make sure they are dairy free or can be prepared dairy free. We have not found a milk substitute that he will drink at meals. He will not drink soy, almond, or rice milk, that's any flavor. He will drink his EO-28 Splash so that is helping him with calcium and vitamin D. Wes has had a follow up with the gastro this past week and he was surprised and very pleased that the diet has worked so well with his constipation. We are pleased as well.

Wes' behavior has not gotten any better in the last few months either. It's progressively gotten worse. He can no longer tolerate any changes, even those he's been prepared for. Transitions are, once again, very difficult for him. We've gone back to PECS all the time as well as reinforcers to help him get over the rough times. The school consultant also recommended buying the handheld version of the V-Smile that he can work towards when we're out and about and he's having a hard time. So far, it's working, but we still have issues.

Casey has been following in his older brothers footsteps. His behavior has been pretty bad lately too. I know he's just trying to get attention because we've been so focused on Wes' behavior and correcting that. I set aside some time during the week for just he and I to do special things. We go to the library to read books, visit a park we don't normally go to, and have special treats. He will be starting preschool in the fall as well, so that should help a lot. He really loves to play with other kids and we don't go on playdates because they are just too difficult.

Wes will be starting his summer program next week and I've included a playgroup two days a week for him. It's a social skills playgroup. They are ABA trained and will include mainstreamed kids. He's on the cusp of wanting to join in with other kids. He just needs to learn the skills to get him over that first hurdle.

For the moment, that's all.

Sweet relief

2009-04-30T12:46:00.003-04:00

I don't know why, but I am still amazed that this is working. Maybe it's because I didn't want to think it would work. I thought the effort would be more then the pay off, but I was wrong. I can just see the relief on Wes' face when he goes. Some days he's going twice! No more stomach distention, no more struggling, and no more constipation! He did have one issue where I found a small streak of blood in his diaper. He had gone earlier that day without a problem. He seemed fine, but was a bit read. While at the playground, he kept grabbing at his rear end like he had a wedgie. I adjusted his pull-up (yes, we're back to those) and sent him off to play again. After 5 more minutes, he came over to me and said "I hurt". He's never said those words to me but I wanted to take him serious. I packed the kids back up and we headed home so I could change Wes. That's when I discovered the blood. I immediately called the pediatrician and the nurse told me to keep an eye out and if it happened again, to bring him in. I know he has to have some irritation left over from the constipation. It could be small hemorrhoids or some left over tears from all the struggling. I just hope my baby is okay.

I've purchased two books and borrowed two from our lending library on potty training. I am determined to have this boy potty trained by the end of summer. My goal, as huge as it sounds, is to have both boys trained by the end of summer. Lord, give me strength.

Things are looking good

2009-04-17T15:59:00.002-04:00

I know it's still too early to tell, but things are looking real good. So far, even after the last slip up, he has consistently gone once a day. He did not go on Tuesday because he went late Monday night when he was in bed. Like clockwork, he went the next day. His eliminations still seem to be a bit too hard, but I'm not sure. They could be normal for him. All I know is that he's going and he doesn't seem to be having any gas issues or distention in his belly.
Not sure if this is a coincidence, but his speech has improved slightly. His behavior, however, has not. He hit me the other day and I looked him right in the eye and told him that I would not tolerate hitting and he is to keep his hands to himself. I then turned my back on him. Within 20 seconds he said "I'm sorry. Give me a hug big guy!". I was floored. I gave him a big hug, told him that I loved him and gave him a big kiss. Just today, Casey asked to watch something on t.v. so I turned it on for him. Wesley came up to me and said "I don't want to watch this." Again, floored! He's even seeking me out to ask to go upstairs and play in his room. Like I said, not sure if it's a coincidence or maybe it's something more.
It's still a struggle to find things for him to eat. He's more willing to take bites of foods if there is a reward offered. I'm not thrilled with the idea, but if it gets him to eat a more variety of foods, then I guess it's what we have to do...for now..

Works in progress

2009-04-13T10:52:00.002-04:00

It's been an interesting couple of days. Of course, Easter was here so it didn't leave me a whole lot of time to blog. I did keep track of what's been going on with Wes though.

On Saturday, he eliminated twice. Each time was pretty mushy and had a strong odor. On Sunday, he eliminated twice again and this time it was more formed, but still soft. He had had no milk since Thursday. During the chaos of Easter, pizza was ordered. We've given Wes pizza and scraped off the cheese, sauce and any toppings. He seems to be fine as long as there is no dairy in the pizza. Well the pizza that was ordered yesterday contained milk ( I didn't look it up and he was so hungry). So far, he's eliminated and it looked similar to yesterday except maybe slightly more formed. Easily passable though. We'll have to wait and see what the pizza does to him.

His behavior is still very defiant. I talked with the autism teacher on Friday and she seems to think that he's going through the two year old stage that he never went through. He's more aware of choices and his likes and dislikes. It's a good thing, but I still want him to understand that his behavior is not okay and that he needs to use his words to make his choices known instead of tantrums.

In the meantime, we're hanging in there and waiting for vacation next week.

Accidents Happen

2009-04-09T10:00:00.002-04:00

Wes is in the middle of a constipation cycle. He was given goldfish crackers on Monday and accidentally given cheese on Tuesday. He still isn't eating well on the new foods. I did get him to take a whole EO-28 Splash yesterday so that's good. I took a trip to a natural market in another city and found some cereal bars that are very similar to Nutri-Grain bars that he loved. These are much healthier though. I also found some vegan fake cheddar cheese crackers that I'm hoping to substitute for the goldfish that he's addicted to.

I've been giving him Miralax to help move him along, but we're on day 4 now. I'm dreading when he finally does go because I know it's going to be painful to pass. Yesterday, he was having some gassy cramping. I could tell because his face would scrunch up and then he'd run, hide and sit in the catchers stance until it passed. I feel so bad for him. I wish I could figure this out.

So today, we start fresh. Absolutely no dairy and hopefully that will work. I'm considering starting him on Super Nu-Thera from Kirkman's labs but worried about him getting too much. Maybe we should stop the EO-28 Splash because that's actually a meal substitute. Any advice on that front would be helpful.

Yesterday, Wes had a follow up appointment with the Genetics counselor and he noticed these pimple like things on his chest and his neck. He thought they were something called Molluscum Contagiosum. So off to the pediatrician to double check and sure enough, that's what he has. What else can this child possibly go through! If you've never heard of it, I highly suggest you read it because it could happen to your child.

The ups and downs

2009-04-07T10:17:00.004-04:00

It's been 3 full days of no dairy for Wesley. He's on day two of no bowel movement so I think I might give him some Miralax. Not sure what's going on.

We had his IEP review and his Summer Program meeting yesterday. We talked a lot about his behavior lately. He has become very stubborn and stuck. He doesn't want to do what he's told at school and at home. He fights us on nearly everything. I'm not sure what's causing this. Could it be the milk, or maybe it's watching Casey's behavior. Casey is certainly in the terrible twos with gusto. Wes has been watching this behavior and even imitating some things Casey is doing. They have been bickering like brothers do but moreso lately. Wes has even gotten very physical with Casey. I'm not concerned because Casey can certainly hold his own. He doesn't hurt Casey, but makes it known that he's getting on his nerves.

We'll keep on keepin on.

Advancements in Technology

2009-04-07T10:17:00.001-04:00

Microsoft funds mobile-phone software for autistic children

By Todd Bishop on April 2, 2009 at 1:43 PDT
http://www.techflash.com/microsoft/42348212.html

With financial and technical support from Microsoft, university researchers are developing software for mobile phones that uses pictures to help autistic children communicate. The software, available for download under an open-source license, lets kids form visual sentences by touching the phone's screen to select pictures and move them around.

The program is being developed by Gondy Leroy of Claremont Graduate University and Gianluca De Leo of Old Dominion University , with funding from Microsoft's External Research Group. It takes advantage of the established Picture Exchange Communication System, which is more commonly used with laminated paper cards.

Microsoft is publicizing the application in conjunction with World Autism Awareness Day. But people with iPhones or BlackBerries are out of luck, for now: The application works only on Windows Mobile devices.

Anything's possible

2009-04-05T17:55:00.002-04:00

Check out this story in Yahoo News tonight. I am impressed. Another extraordinary kid (and amazing parents) that gives me hope.

Enjoy.

The start of something new

2009-04-05T11:42:00.002-04:00

We have started the dairy free diet slowly. I've started eliminating most of the milk products he eats like milk, goldfish crackers (which he lives on) and cheeses. My trip to Trader Joes was helpful, but I felt more confused then before. What I needed was to figure out what exactly Wesley eats daily and then try to find alternatives (whether it be pre-made or homemade) and start with those. I did find some items that will be replacing what he eats now. I also found an alternative to the goldfish crackers for school. They aren't crackers, but they are cookies made without milk. Those should do and he likes them. All I need now is to find or make a bread that has no milk.

Now on to the behavior. I'm not sure what is going on with him. We really are only 2-3 days into decreasing his intake of milk (not 100%) and his behavior has taken a turn for the worse. It's been almost 2 year since he's had a tantrum like he's had the last two days. Screaming, carrying on, going limp, refusing to do what we ask. Our usual ways around this aren't working either. Could he really be going through with drawls on the milk products we've taken away so far? These tantrums have taking us by surprise because we haven't had to deal with them in so long. He's usually pretty easy going when we lay out what we're going to do ahead of time.

He's also starting to use scripted phrases (echolalia) much more then he used to. He repeats the same phrase over and over again. More today then yesterday. Maybe it's his way of coping from the tantrum he just had or maybe something more.

Yesterday, he had a huge bowel movement that exploded out of his diaper. This hasn't happened in a long time either. It had a very foul smell and was very loose. It took many wipes to clean up, but I'm sure he felt better. He hadn't gone again since Wednesday afternoon and that was very large and well formed. Again, not sure what to make of it, but something I'll be watching.

I'll be documenting his progress daily on here. Some might not be pleasant to read (like his bowel movements) but I need to keep track and what better place then here so I can get some feedback from other parents!

Got milk? Nope

2009-04-02T12:27:00.002-04:00

Wes had another follow-up with his gastroenterologist on Tuesday to discuss any changes since he put him on L-Carnitine for his constipation. At first, it was working okay. He seemed to be more regular and having an easier time going. The the smell of fish began to overpower him. I started calling him Tuna because everything about him smelled of fish. Come to find out, the dose needed to be lowered. He would go just fine for about 4 days or so, and then have 4 days of constipation followed by a movement that was just too big for his tiny body.

After talking with the doctor, it was time to try a milk free diet. He tested negative for the milk allergy but we all know that those aren't acurate. He only drinks one cup of milk a day and not much else dairy wise except those damn Goldfish Crackers! The boy can live off of these. The school uses them as reinforcers when needed and of course, he asks for them for snack. That's going to be the hardest thing to break. The other is the Pediasure. It's a gluten free food, but not a milk free food. It is lactose free. So what do we do now with the nutrician he isn't getting from food. Problem solved apparently. We're going to try switching him to EO 28 Splash. It is milk free and gluten free. The problem is, it's sort of like a juice and Wes doesn't do juice. It is milky looking, but has no milk in it. It doesn't smell that great, but the doctor insists it tastes better then it smells. I'll take his word for it. So far, he isn't liking it too much, but time will tell.

My friend and I are taking a fieldtrip to Trader Joes this weekend to do some shopping. I'm not sure which alternate milk I'm going to try. Either Rice, Almond, or Hemp milk. It will definately need to be a good flavor like chocolate or vanilla for him to take to it. Hopefully, I can find an equivilant goldfish cracker that he'll take to as well. If the milk free diet works, then we try the gluten free too.

Let's hope this works for the little guy. I hate to see him in discomfort when he hasn't gone for days.

Just don't get it

2009-03-20T18:16:00.002-04:00

It's been awhile since I've blogged. It's been awhile since I've checked others blogs too. Nothing too major has occured and frankly, I haven't been in the blogging mood. I have to be in the mood to write.

We received another update from the Autism Consultant for the school district. He sent us the update to our email and his first line was "Your son is a superstar!". Wow. That is so great to hear from someone who is an expert and has been around the block with these kiddos. I mean, I can tell how hard Wesley works and through that hard work he's succeeding more then we imagined. There was one section that's always the issue. His social/play skills. He's gone from tantruming when made to do some play skills to doing them and quickly to get it over with. He's just not into it.

I went through this phase of play with him. At first I didn't think I could reach him, then I didn't think I was doing it right, then I came to the realization that he might not ever 'get' traditional play. Oddly enough, I'm okay with that.

I was discussing the report with his para and she said the same thing I had been thinking. He may never get it. He might just be one of those kids who prefers to bury his face in a computer and be on the math league. Now that scares me, but not for the reasons you think. I am so proud of him for everything that he does. I will be proud of him no matter what, but when I think of computers and math, I think of him being picked on more. Couple that with the autism and does this child of mine stand a chance? Will the kids that are in high school with him be more tolerant of kids like him? Will they be just a mean and hateful as the kids I remember going to school with. I don't know if my heart can take the torment that might be in store for him. My heart says to start homeschooling, but my head says that might be the worst thing because he needs the chance to social with his peers. What's a mom to do?

A local father who occationally writes for our local paper made a documentary about his wonderful young son who has Cerebral Palsy. The documentary is about inclusion in our schools. The movie also documents the stories of other children and adults who have various disabilities. During the movie, they interviewed some high school students and they seem to be accepting of this student, but is that the truth? When the camera is off and the stakes of popularity are high, are they still that acceptive?

Wes is only 4. He still has a long way until he's in high school and until we find out just who he will become and what he will face. There's much more work to be done not only for people with disabilities, but for people without.

A taste of success

2009-02-16T19:12:00.002-05:00

Today was crack down day. I have Wes multiple weeks of no pressure, no asking, and no comments on using the toilet and not wearing diapers anymore. He was still having overflow accidents and I had had my limit of washing bedding and loads of laundry. I was putting my foot down and today was the day.

Starting first thing in the morning, I got Wes out of bed and brought him to the toilet. I sat him down, told him to go to the bathroom and left the room. He sat (not happily), but nothing happened. I decided I was going to take him every half hour if he didn't go, and one hour if he did go with success. I wasn't going to ask him or mention that he was going to the bathroom. I just took his hand and up the stairs we went. The second time went like the first. Nothing, but that was okay. I didn't say anything to him as I pulled his pull-up back and pants back on. On the third time, I left him a little bit longer in the bathroom and then I heard "I am finished." I went in to check on him and I smelled the distinct odor one leaves behind from their behind. There was no way he did what I was thinking. I figured he had some really strong gas. He has his little stick legs glued at the knees so I pried them open and found a small puddle of urine in his lap. I started clapping and whooping it up. Tim brought him a cookie to eat once he was cleaned up. I had him get up from the potty and there in the bottom of the bowl was success number 2 (no pun intended). I still can't believe he did that. I made an even bigger deal and he got another cookie for his triumph.
The rest of the day went without any surprises and off to school he went. Nothing there either, but his para told me she gave him extra water at school so she was sure he had to go. We immediately came home and back up the stairs for another successful elimination. Holy cow! Unfortunately, I got distracted by dinner and Tim needing to leave (he had the day off) so I missed the next round and he went in his pull up and all over the floor.
I really feel like we lost the momentum for the day with that accident but hopefully, we can recover tomorrow and he'll be on his way to being a big boy in underwear.

Model Magic

2009-02-07T19:10:00.002-05:00

Another great report came home from school about how well Wes has been doing in school and how well he's been progressing with his program. He's been doing a sight word program at school and loves to read. Santa brought him some flash cards with common items and we've been working on those at home too. He loves for me to read him a book and then reads it back to me. That's my favorite part of our day. The reason for the sight word program is to help with his articulation and to help him increase his the length of his speaking. I've noticed a big difference in his word utterance since he started this program. He still does a lot of echolalia of t.v. programs he's watched, but he's remembering to ask the correct way for things he wants rather then using what he hears on t.v.

Play skills are still an uphill battle for Wes. School has taught him some play activities and tries to include him in as much play with one student as possible, but he still shows no interest. School (and I) have decided to try video modeling. I'm really excited to give this a try because Wes has been copying many things Casey has been doing. From pretend sleeping, to making funny noises alongside Casey. He's really starting to notice his brother and the little things he's doing. Instead of purchasing the videos, I found them at our government resource lending library. We can borrow the DVD's for two weeks and I'm starting with Play. The library has Watch Me Learn. I checked out Teach To Talk, but since it's endorsed and created by Jenny McCarthy, I'm glad to try Watch Me Learn. If the video's prove to be useful, I'll purchase them and then pass them onto the school. The school will be making their own videos using older students which I think is great. These students will open up to others who are different and will feel good about themselves for helping others.

I'll be sure to update after the two weeks.

What's in a name

2009-02-02T18:57:00.000-05:00

When I was thinking of a name for my baby, I had always imagined using the name Wesley. It was the name of a character in my favorite movie (Princess Bride) although the characters name was Westley, it wasn't that hard to spell, and it's not a name you hear often. Easy to spell was a big selling point for me. Never did I imagine why that would be so important.

Wes' teachers and I have been working hard on getting him to write his own name this year. His OT wrote a letter of recommendation for his IEP meeting on implements that should be used when he writes. The use of a pencil weight, a finger grip and actually a sweat band were recommended. I'm ordering the pencil weights and the finger grips because school has been dragging their feet and Wes shouldn't have to wait and suffer before they get a move on. Anyway, he's been tracing the letters that are written for him and school as well as his OT have been using Handwriting without Tears to help Wes learn to write his letters. Deep down, I don't think it was that he didn't know how, it was that he couldn't. That's where the implements came into play. His sensory issues were so deep that he needed as much input to his hands (the weights and the arm band) to help him focus on the writing rather then his hands.

I'm proud to say that he came home from school with a paper that had his name scrawled across it in that little preschooler way. The letters were so large, he needed two lines to complete his name. The look on his face when I asked him if he wrote his name was enough for me to know that he was so proud of himself, as was I. He still has some trouble with the S and the Y but by the end of the school year, he'll be a pro at it. Now, whenever we do projects at home, I make him sign his name. Practice makes perfect!

New thing to worry about

2009-01-28T08:17:00.002-05:00

I need help from parents out there. I'm really concerned over Wes' new "trick". I apologize if this is too graphic, but I'm at a loss.

Wes has been holding in his urine lately and for long periods of time. Yesterday, he woke up completely dry in his diaper. The last time he urinated was the night before bed. His diaper was wet, but not full. Anyway, he woke up dry and didn't urinate until nearly 12:30 in the afternoon. When he did go, it was so much that at least a cup of urine did not absorb into the diaper. It was completely full from front to back. He had at least three cups of liquid (milk and water) and still didn't go until after noon.

I'm really worried about what this holding in is doing to his bladder and kidneys. I've got a call into his pediatrician to discuss this issue and possibly take him to another specialist to see what's going on and if there is any damage already. I don't know if it's behavioral or not. We're still trying the toilet training but with him holding it for hours, it's not really going anywhere.

Has anyone else experienced this? What was your course of action? I'm really lost here.

That's using your noggin

2009-01-26T12:32:00.002-05:00

It's official. Casey will be in a toddler bed as of tonight. After putting him in his crib and making sure the side rail was up, he tried to escape with some painful consequences. I was in the kitchen getting Wes' boots, coat, and backpack for school when I heard Ba-Boom! and felt the house shake. I took off upstairs, pushing poor Wes out of the way, and found Casey laying on the floor near his crib with a stunned look on his little face. He turned to look at me and said "Mama, I fell on my head". I scooped him up and make sure there was no blood or broken bones. When I asked if he was alright, he started crying. I felt so bad for him.
So tonight is a big night for him. We have tried using the toddler bed feature on his crib and that turned into a disaster but I can't leave him in the crib and God forbid something worse happens to him when he tries to escape. He's going to have a pretty bare room for a month or so until he learns to stay in his new bed.

What has happened to my child?

2009-01-19T15:54:00.002-05:00

I don't know where the Wesley is that I've known. He seems to have disappeared and been replaced with a child who changes everyday. I'm loving this new Wesley, but with it comes new learning from us all. New learning on how to deal with all the changes he's making.

Tim and I took a much needed and much deserved night to ourselves. It was our anniversary and the boys grandparents offered to take them overnight. Casey has never slept overnight at any ones home, but he is comfortable there and loves going to visit so I knew everything would be just fine. Except for escaping the crib there too, the boys had a blast. Casey likes to pretend he's sleeping. He asks us to put this blanket over him and fake snores. He thinks he's hysterical. Wesley has been watching him and jumped on the floor and laid down on a pillow. He said "Help me please" wanting his blanket over him as well. Once the blanket was down, he closed his eyes and started to fake snore. What an accomplishment to mimic his brother and kind of make a funny.

While at the grandparents, Tim called to check on them and Wesley wanted to talk on the phone. Here's how the conversation went

Wes: Hi Daddy!

Tim: Hi Buddy!

Wes: (giggle) Hi Mama!

Me: Hi Angel!

Wes: (more giggling) Hi Daddy!

and on it went for almost 2 minutes, back and forth. Might not be much of a conversation, but he has to start somewhere!

Today, at lunch, I've been really trying not to give Wes any goldfish unless he earns them. That's all he will eat and all he'll ask for at lunch. Today was a yummy treat of peanut butter and fluf sandwich with some apple slices and some baby carrots. I got him to take a teeny tiny bite of apple and one carrot. He asked for some fish. I told him he could have fish if he ate his sandwich. I turned my back to help Casey and when I turned around, the sandwich was gone, in his mouth, and he was chewing it. Oh how motivating goldfish crackers are.

Leaps and bounds lately. Not sure what's happening or what is working but something is. We haven't changed a thing.

Tiny bubbles (not in the wine)

2009-01-15T16:46:00.002-05:00

This is huge. Who knew how hard it would be for a child to learn to blow bubbles. It's always been a favorite past time in our home. We always have bubble soap in the house and even have a bubble machine. Casey asked to use the bubbles so I wanted to make a game out of it. I blew the bubbles high in the air and told the boys to jump and "catch" the bubbles. They were both having so much fun jumping up and down (the ulterior motive was to make them tired). Casey asked if he could try so I let him. He was a bubble champ! I was interested to see if Wesley had gained this skill yet or not. Instead of blowing, he makes the F sound with his teeth against his bottom lip. I pushed his cheeks in to form the O with his mouth and success! He figured it out after two cheek squeezes and was so proud of himself, as was I.

We've had some tough days lately with his rigidity with routine. Since the Holiday break, he's gotten worse instead of better. All of the snow days and sick days haven't helped either. I hope this changes soon because I'm nearly at my wits end with him. I've been using this schedule board more now then ever and when we makes choices, I use visual cues to go along with the verbal (usually verbal was enough). He's been making great choices and not being upset by them, it's just when the usual routine has a slight variance that sends him over the edge. I'm just praying for strength right now.

Grant Writing

2009-01-09T12:54:00.002-05:00

Monday was our monthly parent meeting with other parents in our school district who have children with autism. I love these meetings and am sad when they are postponed in the summer time. Our topic for this month was Grant writing. I was so excited to attend this meeting, until I became ill and couldn't go. I sent Tim to collect the information and prayed that he would remember everything. The speaker was a parent who has a child in the school district and has just received her son's diagnosis. However, she has been writing grants for her son even before his diagnosis. I really wished I could have gone and met her. I hope she starts to attend our meetings.

Anyway, she made a packet for everyone and included links to organizations that help with grant money for things like medical bills, equipment, evaluations, private therapies and even one that offers grant money for extracurricular activities! She also included a sample letter and what to include in the grant request.

Immediately, my mind went to wanting to write one. I'd love for Wes to receive ABA therapy outside of school for everyday living. Unfortunately, our insurance won't cover it and it's just too expensive. The other obstacle is to find someone around here that is a provider. So that's my new mission. I can just see Wes making so many advances if we had an ABA provider at home. He's getting some at school, but not enough in my opinion. There's only so much you can squeeze into 2 hours a day.

It seems like every time I seem to be hitting a wall, something like this falls into my lap. I know, I know! Maybe I should stop the anxiety and see what will happen before I turn it into a disaster.

The escape of inmate 090206

2009-01-05T15:23:00.002-05:00

He's gone and done it. I knew it was only a matter of time because this kid is part monkey. He will climb on just about anything. Now we can add climb out of to his list of tricks.

It was a peaceful nap time on a Sunday afternoon. Wes was busy playing a Nick Jr game on the computer as a reward for being well behaved. Suddenly, I heard Casey's white noise CD playing louder than it had earlier. I figured his door must have popped open because we didn't hear any other noise. It was 2pm and I figured he'd be up soon anyway. I debated on checking on him, but I didn't want to wake him if he was still sleeping so I didn't. Ten minutes later we hear the distinct noise of tiny feet running up and down the hallway. My first reaction was Oh crap!. The second was Oh great!. I made my way up the stairs and a tiny little faced peeked from around the corner at me. Hi Mama! was his reply. I knew that some damage had been done, I just had to find out where. Making my way to his bedroom, I found it. Every toy that child had in his room was strewn about on the floor. Every book lay in a heap in the middle with all his cars. Then I realized just how smart this little boy really is. Somehow, the side of the crib was left down and that's how he escaped. But before he made his way over the fence, he threw all his blankets and pillow on the floor to help break his fall.

Crafty little fellow.

Merry Christmas to all

2008-12-24T08:55:00.001-05:00

Merry Christmas to everyone. I hope 2009 is easier on you and brings you lots of joyous moments. God Bless

Sigh

2008-12-24T08:53:00.002-05:00

Daddy: You need to listen to Mommy and Daddy. No more screaming and yelling.

Casey: I know, but I cute.

Oh man.

Early Christmas Present

2008-12-23T18:09:00.003-05:00

After a follow up appointment with Wes' gastro (more on that later) Tim and wanted to take the kids out to eat for being good. We've been cutting back on eating out a lot so it was a nice treat. We headed to Friendly's for some yummy food and even yummier ice cream. It was pretty quiet at first, and then started to get real busy. Sitting in a booth behind us was a family with a little boy probably about the age of three. He was so cute, but was giving his parents a bit of a headache. The mom told him to come sit on her side of the booth which happened to be the side closest to us. A couple of times, the little boy popped his head our way and giggled. Wes was done eating and was laying down. The second time the boy popped over, Wes sat up, smiled and said "Hi Dougie!" I have no idea who Dougie is but did he just initiate a greeting all on his own?! The Mom laughed and told her son to ask what his name was. Wes immediately piped up "My name is Wesley". Again, we were amazed. He replied with help from his mom that his name was Matthew. I waited to see what Wes did and when he didn't respond, I told him to say "Hello, Matthew". The two played a quick game of peek-a-boo and then were instructed to sit down and eat their foods. Tim and I couldn't have been more pleased.
It was the best Christmas gift we could ever receive. To see our child make a connection with a child he has never seen before. To be delighted in what a child his age is expected to do just melted my heart. I can not wait for school to start so I can share this with his teachers!

Murphy's Law

2008-12-19T18:18:00.000-05:00

When one child is sick, it's going to run like Usain Bolt through our house. And it did. Coughing, fevers, stuffy noses, runny noses, and ear infections.

Both boys had been feeling under the weather but nothing that warranted a call to the doctors until today. Wes woke up as his usual self but still wasn't eating a good breakfast. An hour later, he ran over to me in tears that I've never seen before. I could tell his cry was a pain cry and it was serious. He tolerates pain pretty well. Fifteen minutes after getting hurt, he's fine, off and running. This time was different. I rocked and consoled him as best I could until the Childrens Advil kicked in and the doctors office opened. By the time I was able to call, he was totally tuned out to the pain. I kept asking him what hurt to make sure he understood and the story didn't change. He kept clutching at his ear and crying. At one point, he grabbed my hand and said "Boo Boo ear Mama! Rub, rub, rub!" I lost it. I can't stand when my babies are in pain and I can't take it away for them. I was so greatful that he could tell me what hurt instead of the guessing game like usual. That's even worse.

So 3 hours later, both kids have ear infections and will be on antibiotics for the next 10 days. Meanwhile, Tim and I are still suffering through our colds. Did I mention that I hate winter?

Message from Santa

2008-12-12T08:27:00.002-05:00

This is so adorable. Thank you to Peggy over at Lucky Number 7 , who sent this over to me. You can have Santa send your little one a message over the Internet. You just answer a couple of questions about your child, upload a picture and watch their personal video from Santa. Might give those who need reminding to be good an extra incentive to be extra good.

Not perfect, but close

2008-12-08T15:14:00.003-05:00

I don't believe in the word perfect because nothing is perfect. Everything has it's flaws.

Now, I know my last post was a downer, but I'm sort of a literal thinker myself. After taking a few days to think about it (and a comment from a blogger Dad who I hold much respect for), I need to look at what he has accomplished since last year rather than how much farther he needs to go. He has made huge progress and I do notice that, but my brain is always thinking of what's coming next. He has a pretty solid IEP this year. It's not perfect, but I can't expect it to be. It will certainly meet his needs and help propel him forward for next year.

Today was the annual IEP meeting for Wesley. It's not perfect, but I can't expect it to be. It will certainly meet his needs and help propel him forward for next year with just the right amount of pushing. Listening to all of his team made me see that I need to change my thinking. Every last one had said how much progress he's made since last year and that while he has a way to go, he's moving ahead at a steady pace. He's able to sit in circle time, he's able to participate and complete art projects, make center choices on his own and help lead the class when it's his turn. Last year, it was a miracle to get him to even sit in a table near circle without a tantrum. I say that's pretty big.

My other mission is to stop thinking like one of Wes' therapists and start thinking like his Mom. I can still help him learn and grow without constantly obsessing on what he is or isn't doing at this moment. It's taking away from my ability to just love him and make sure he knows he can count on me and depend on me for whatever he needs.

Sucker punched

2008-12-05T18:23:00.002-05:00

You know when you think finally things are going your way. You finally feel comfortable with something and you know where you're headed? Then BOOM! Something puts you back into reality and it just totally sucks. That's how I feel.

I was starting to become comfortable with Wesley's future. He seemed to be making awesome progress in both the social and speech area's. I could stop dreading what was to come. Then I get the draft copy of his IEP for our meeting on Monday and I'm sucker punched back into reality. To see his progress, or lack of progress, on paper makes me feel ill. I'm proud of the work he's done and I know none of it was easy for him. I just can't stop seeing the deficits and feeling like we're never going to get where he should be.

The school uses the Rubric scale. Each subject, if you will, is broken down to area's and each area is broken down to levels. So fine motor might be broken down into 5 area's and those five area's are broken down into levels. They changed the scale since last year since that was the first year they used it, so I can't really compare from last year's IEP. Once again, in one area, he's not even on the scale. How heartbreaking that is for me to see. It's almost like we've gone backwards. Of course there are some subjects that he's just taking off and that's great. I see him starting to spell words and counting to 30, but then he just can't seem to cut with a pair of scissors or play next to a peer.

So I spent another night crying for my son and where he's at. I need to just push through those feelings and work even harder with him turning every single thing we do into a lesson. I'm contacting all this outside therapists for any recommendations they think he would benefit from in school and making sure they are added into his IEP.

Even God got a day to rest, so I'm waiting for my turn.

Wes-isms

2008-11-29T10:56:00.002-05:00

I've been keeping track of what I like to call Wes-isms. He's been using scripted phrases more and more lately. Most come from shows he likes and some come from music, specifically Laurie Berkner.

Let's do it. Break it down!
Translation: I want to get down.

He sure wants to get out of here.
Translation: I want to get out of here

Super Duper Computer!
Translation: I want to play on the computer

Change chairs to stairs
Translation: I'd like to go upstairs

Click, turn it on
Translation: Turn on/off the lights

One more stop on the train.
Translation: Stop annoying me / Stop what you're doing.

I find them interesting. I need to ask his teachers and the coordinator whether we should be correcting him with what he should say, or answer him by using what he should have said. We're proud because it's a good sign that he's trying to get across what he wants even if the sentences are incorrect.

Happy Thanksgiving

2008-11-27T10:55:00.000-05:00

A big Happy Thanksgiving to all in the blogosphere and beyond. Bless you all.

Where's Daddy

2008-11-24T20:01:00.002-05:00

As usual, I'm making dinner and Wes is sitting in front of the fridge using his magnets. When dinner was ready (a gourmet meal of Mac and Cheese), I told the boys to go sit at the table. Wes stands up, and says "Where's Daddy? Hi Daddy!"

He knows who Daddy is. He interacts with Daddy all the time requesting big kisses and tickles, but never once has he asked for his father. Tim has a meeting that night and wouldn't be home for dinner. It's not an unusual occurrence for the boys and I to have dinner alone. It happens at least once a week. It was unusual for Wes to ask where his Dad was. Another proud moment at our home. He's emerging faster then I ever imagined.

Just one of the boys

2008-11-20T10:07:00.002-05:00

We're getting to the last days to get outside and play at the playground before the snow starts to pile up. We took advantage to the small amount of sun and let the kids run loose last weekend. When we pulled up, we noticed there were about 6 to 7 older boys playing a game with a soccer ball. They were throwing each other "out" using the ball. Neither of my boys paid attention to them at first, but then Wes became kind of interested. He was watching from afar, flapping and squealing like a mad man. I don't remember ever seeing him this interested without it being adult directed. After 10 minutes of watching and swinging, he went up to one of the boys and said "Ball, please". I was a bit stunned. My first reaction was to tell Wes that he was too little to play with those big boys. One of them actually said he could play with them. I thanked him for offering but told him we'd pass. Wes didn't get the concept of how they were playing and they were much bigger boys then he. I guided him back to the swings and was able to distract him for 5 minutes. He jumped off the swing, ran over to another boy and said "Ball, please". This time, I didn't say a word. The boy handed him the ball, to which Wes threw the ball in the opposite direction. This was exciting to him and he showed it by jumping and bouncing all around. He asked one more time before the boys started to leave. I watched my four year old standing at the fence and actually watching the boys walk away. He looked disappointed, almost sad.

It was almost like watching him be a typical 4 year old. He wanted to play with others and he even initiated the social situation. To see him take in what these boys were doing, process it, and decide it was something he wanted to do too made me cry. Knowing that this is so hard for him and that he wants to be a part of the group and a part of a social circle makes me hurt for him. Also knowing that getting him involved in as many social situations that we can has been helping him. I don't push him to interact with others. I do make him greet people and give eye contact, but the rest I leave up to him. I want him to feel comfortable, and not forced. It will come. It's actually emerging right now.

Grey's Neurology

2008-11-14T15:54:00.003-05:00

Last night, the show Grey's Anatomy introduced a new character named Virginia Dixon. The character was played by the fabulous Mary McDonnell (Dances with Wolves, and Battlestar Galactica). The moment the character came on screen, I knew something was 'up'. After she first spoke, both Tim and I looked at each other and smirked. We knew this character would be labeled with Aspbergers Syndrome. Aspbergers is a high functioning form of autism under the Autism Spectrum Disorders.
Ms. McDonnell played the character well. She must have done quite a bit of research on the subject. Not only did she display the social awkwardness that accompanies Aspbergers, but she showed the preoccupation with information that some with Aspbergers can show. Her character will be back for at least two more episodes and I'm really interested in what will happen with Virgina Dixon.
So far, there have been mixed reviews out there on this role. Some were disappointed that the story line was blah, some were so happy to see a character with a disorder like this portrayed as a successful person. If you get a chance, or have already seen it, what's your take?

Preschool Crush

2008-11-10T18:35:00.003-05:00

Hee hee. My baby has his first crush. Well I'm not sure it's a crush, but I'm gonna pretend because it's rather cute.
Wes' para has told me that he likes to play with this particular girl, A. He and A have played together a few times when he's engaged. Today, they were doing an obstacle course together. A was following behind Wes and he kept looking behind to make sure she was still there. After a few times, A decided she didn't want to play anymore and took off. Another little boy came up behind Wes in the tunnel and when Wes turned around, he was surprised. According to his para, Wes turned around and say "Oh, not you boys name". He said the child's name, but I'm just saying boys name.
I find it so cute that he wanted to play with her and he was looking for her. My baby is growing up. That's a huge step in his social skills. Social skills are where his biggest deficit right now, but showing improvements. Way to go Casanova.

Childless

2008-11-08T14:14:00.002-05:00

If only for the evening. Tim and I were invited to a small dinner party this evening with some friends. Both couples also have a child on the spectrum. I couldn't be more excited. While most of the conversation will probably be on our children (that can't be helped), it will be nice to be with adults only and relax. I also won't have to worry about who's getting into what, whether or not that breakable was broken by one of my own, and where the socks are that were not supposed to be removed. They get to spend some time having fun with the new sitter we found. Yes, that's right. We found a sitter and she's great! I still pinch myself about it.
We thought about bringing the boys along because they were invited. They are the youngest of the bunch. The other couple (that happens to be J, the one I praise for all her advice and help) won't be bringing their son, and suggested that we find a sitter so we can enjoy ourselves (I told you she had great advice). Tonight will be about adults, support, and friendship.

Just so we're clear

2008-11-06T10:00:00.002-05:00

This is not a political blog. There are many out there, so if you want to start something (such as a debate) then go there. It is my right to support whomever I see fit. If you want to comment about that choice, then do so without anonymity and without cowardliness. I'll be happy to give you my opinions and thoughts, but I won't do it when someone is trying to be condescending. Thank you.

Yes we can!

2008-11-05T13:54:00.001-05:00

Happy Birthday my boy

2008-10-26T13:00:00.002-04:00

Today, Wesley turns 4. I always had a hard time picturing myself with a child who wasn't a baby. I guess because I wanted a baby so badly that I couldn't get past the baby stage. Well, now my baby is a child. No longer the little bundle I so longed for, but a child who fills my heart with love.

He has come a long way. It was a year ago that he started school for the first time and he was very far behind his peers. While he's still behind them, he's catching up and making connections I never thought possible. He amazes me every day. It's what I look forward to when I wake up in the morning.

Happy Birthday handsome. You are a big boy now and I look forward to watching you grow even more. Thank you for choosing me as your mother,I am forever blessed. I could not be more proud of you. I love you with all my heart and soul.

Just my luck

2008-10-21T15:45:00.003-04:00

Today, Wes was supposed to start aquatic therapy. I had heard some good things from other parents and I figured what the heck, we'll give it a try.
I got Casey up from his nap, jazzed Wes up to the idea of going swimming, packed a bag and off we went. We were to meet at a hotel and use their pool, but when I got there I didn't see the therapist. I figured we were early and she hadn't gotten there yet. I asked the front desk if she knew if the therapist was there and she didn't seem to have a clue. More like disinterested and couldn't be bothered. The boys and I sat down to wait for the therapist. After 15 minutes past his appointment, I was going to call to find out what's up. However, I forgot the number and it wasn't listed under the clinic name that I know it as. The kids were nearly going wild at this time and I was trying my hardest not to yell at them. Finally, I grabbed them and headed out. I drove all the way home to get the number and come to find out, it wasn't at the Holiday Inn, but the Comfort Inn. Oh, what the hell! I wrote down Holiday Inn. Was I not paying attention, heard Inn and Holiday came to mind? I have no idea. The poor therapist had been waiting in the lobby of the COMFORT INN and not the HOLIDAY INN. We're going to try again next week.

Wes will also be starting an extra half hour of OT to work on his feeding and sensory issues with food. I think some of it is psychosomatic because he gags before the food even touches his fork. Silly boy.

Go Ahead, Make my day

2008-10-16T18:20:00.002-04:00

When I picked up Wes from his regular school day, I was called back in because the autism coordinator wanted to talk to me. I assumed it was because of Wes' potty training (more on that in a minute).
I was pleasantly surprised when I walked into the room to "Wes is my star student this month! He is doing son wonderfully and I can't wait for you to read my report. He's doing much better then I had anticipated and I couldn't be more pleased!".

Wow! That put a huge smile on my face and filled my heart with pride. I knew he had been working so hard and his teachers and therapists have been working him hard. I can't wait to read the report and I'll be sure to share once I do.

As for the potty training, we're going to stop for a month or two and regroup with the coordinator and his assistant. He seems to think that Wes has gotten into the routine of sitting on the potty, getting off, and eliminating in his diaper. Makes some sense to me so I'm going to go with it. We'll set up a meeting most likely after the holidays to come up with a new game plan. I just hope it works.

Beautiful Faces

2008-10-14T15:49:00.002-04:00

All different shapes and sizes, colors and hues. These are the Faces of Autism. Aren't they beautiful?

Ah, boys

2008-10-11T17:29:00.002-04:00

I strive to teach my boys manners and to be polite. Alas, sometimes, boys will simply be boys.

While Tim and I were discussing things, Wesley came up to me with his arms up. This certainly isn't new for me. Still carrying on our conversation, I picked him up and held him in a sort of wrestling maneuver called the pile driver. His legs were on my shoulder and his head was pointing down. Not thinking anything of it, I swung him around and placed him back on the ground. He was giggling at this point and put his arms up again. It wasn't until the third time I picked him up that I realized why he was in near hysterics with giggles. He was tooting (farting, puffing, whatever you want to call it) in my face. Not only was he tooting, but he was making himself toot in my face. Just to be sure, silly me picked him up again. This time, it made me crack up laughing. I could feel him pushing the air out of himself and his sweet little face was turning red.

You know, if he were a typical little boy, I'd be grossed out and tell him that wasn't polite to do that in my face. Of course I'd laugh later when he wasn't looking. Except this time, I laughed right along with him because Wes was just being a boy. And boys will be boys right?

So Long 20's

2008-10-08T14:47:00.002-04:00

Hello 30's

Yes, officially today, I've reached my 30's. Honestly, (and I know you're all going to say it's no big deal) it sucks. I don't feel youthful anymore. I know it's just a number, but it does something to your psyche, at least my psyche. Being able to say I'm twenty-something meant I was still young and hip. I was a young Mom and had plenty of time with my kids. Especially Wesley. My goal has and will be to get him to a point where he can live as independent as possible and be able to take care of himself has lead me to forget myself. What happened to my 20's? Where did they go? My journey to Mommyhood started when I was 22. It took four years to reach the part where the journey took a different turn. Boy, did it certainly veer off course. My 20's were not my best years, but I'm going to miss them. Thirties brings about a certain responsibility that I'm not ready commit to even though I'm already in the thick of it.

Anyway, I'm trying to keep it like any other day because the thought of saying "I'm 30" scares the shit out of me.

Pain in the rump

2008-10-02T08:39:00.002-04:00

It's been about a month since Wes was put on Ultrase, the digestive enzyme. We've taken him off ourselves because he was showing signs of pain, discomfort and constipation again. He would hunch over in the catchers stance every few minutes, and I could tell that he was in pain by his face. He wouldn't want us near him and he wasn't going in his diaper. I started to track when he would go, and realized that he was almost 4 days. Thankfully, a session of cranial sacral helped get his intestines moving and he went the next day. Not to be graphic, but it was so hard and wide.

I've been trying to get a hold of the doctor now for almost two weeks. He, nor a nurse, has returned any of my phone calls and I'm getting very frustrated and angry. The medication isn't life or death for him, but it still deserves a call from the doctor. While I'm typing this, I finally got through to the nurse practitioner and she recommended we make a follow up appointment now rather then 6 months. We need to come up with another plan for him.

It wasn't easy giving him this medication to begin with. Because he can't swallow pills, we had to open them and put the contents into a food. Well with his limited diet, that posed a problem. We had to somehow bribe him to eat a few bites of applesauce with the contents in it. He would gag and fight us tooth and nail, but we managed to get it into him. I was worried about giving the enzyme to him when he wouldn't eat anything. What's the point if there's no food in his stomach to digest? Was that the issue causing him pain? Was it because it wasn't consistent and his body wasn't getting used to it regularly? I have no idea. All I know is that I'd rather my son keep taking Pediasure and using Cranial Sacral therapy, then having pains like he was having.

To be continued....

The Cogs are turning

2008-09-20T13:01:00.002-04:00

Wes has always been behind in his cognitive thinking and cognitive shifting. These are very hard areas for him, but he's made huge progress since he's started therapy and school.
When I picked him up from school the other day, his para couldn't wait to show me what he can do. She got his attention and asked him to name a shape, which he blurted out star after a 5 second delay. Then she asked him to name a color, which he immediately blurted out blue. Next, she asked him to name an animal and he said horse. I was jumping up and down with pride for him. The beaming light coming from his tiny face showed me that he was quite proud of himself too. C said "Wait, there's more!" She again asked him to name an animal and he said cow. She asked what does a cow say and he said mooo. Her next question was a cow is a.. and he said animal. Wow. That really is the coolest thing I have ever witnessed.

Interesting piece

2008-09-20T12:57:00.002-04:00

For those who have read my blog in the past, know that I go back and forth with the GF/CF diet and of course the risky business that is chelation. There was in interesting article in our local newspaper about a chelation research that has been called because of the dangers it could pose to children. You can read it here if you wish.
I'm still not sold on this whole idea. After speaking to the gastro specialist, he isn't sold on it either so I'm still stuck where I'm stuck. Again, Wes is making such wonderful progress almost daily, that to throw this at him makes me uneasy. I will say that I tried giving him Van's Gluten Free Waffles and after much gagging, he threw them up. I'm not going to force him to eat them because they might help. It's not worth it in my eyes.

Say what?

2008-09-09T19:30:00.003-04:00

In the middle of cranial sacral therapy, Wes asks for some water. I didn't bring his cup with me and the only thing available was a regular cup from a water bubbler (yes, he still uses a sippy. Not his fault, but mine). He did great, until he thought he was too cool for two hands and he spilled a little. He handed me the cup and said "What happened? Look what I did! ..... " and continued scripting something we couldn't understand. I looked at therapist, and she looked at me, both bewildered at what we heard. Well, how 'bout that.

**EDIT: This morning, when Casey went into Wes' room to 'wake him up', Wes sat up, looked down at Casey and said "Hi Bud!". What the heck is going on?**

Faking it

2008-09-08T12:15:00.002-04:00

I'm not sure where this started, but I think I know how it started and I have to say, I'm amazed and astonished. Wes has been fake crying. No tears. Then he crawls in my lap for a cuddle and off he goes.
He's been into an episode of Super Why where Little Bo Peep loses her sheep and she cries. Sometimes he fake cries when he's watching the show and sometimes it's just out of the blue. It really is cute. He sticks out his tongue a bit and makes this coughy crying sound. Is this the first start of imitating life or is he, yet again, just repeating? I'm not really sure.

Back to school again

2008-09-05T19:46:00.003-04:00

Wes has completed the first week of school. Not a full week, but it still counts in my book. I had been preparing, and dreading this week. Now that it's over (and just begun), it wasn't so bad. I guess I prepared him well because he didn't give any trouble about heading off once again. On Tuesday, we went to the open house at the new school and it was pretty decent. The room was bigger and the set up was much better. They had more space for the classroom as well as two extra rooms. One of those rooms were for the work area's. Wesley had his own area all to himself that he and C (para-pro) work in every day. He found it and immediately recognized his name. I was relieved that he liked the classroom. We spent about an hour exploring everything and figuring out what was where. He colored a birthday bumble bee to be hung up on the wall.
The next day was the big day. Would he be receptive to getting on the bus from home? That was my biggest worry. I made sure to use his schedule board so that he knew after lunch, the bus would come and take him to school. I put Casey down for nap and we sat out on the stoop and waited for the bus. I knew ahead of time that the driver was the one from last year. He loves her and she loves Wes. That would make the transition easier. The bus pulled up and he ran for it. Without any hesitation, he climbed aboard. I had to pull him back for a kiss (there was no way I was letting him leave without a kiss!) and then he climbed in his usual seat and away they went!
Pick-up is tricky. I want to be able to catch his teachers to find out his day since they can't find the time to write in his book so I pick him up at the end of the day. It's a very old school and there is no parking other than teacher parking. Most parents pick up their little one because there is no buses except that for special needs. Winter will be most interesting but I'm sure we'll figure it out.
Next week is the first full week. My little guy is going to be exhausted by Wednesday I'm sure. He's been falling asleep almost immediately the last couple of nights. I love the peace and quiet.

Undigested

2008-09-04T19:59:00.002-04:00

Tuesday was the follow-up with the gastro in Boston. We were going to get the results from all the blood drawn a month before. I was anxious and curious to find out if Wes had any allergies. We were relieved to find out that everything came back normal...except one. A Sedimentation Rate came back elevated. The doctor wasn't that concerned because the number wasn't that much higher then the norm but he wanted to be proactive about it. He also said that just because the tests came back within normal range, doesn't mean that he doesn't have an allergy. Uh..what? Then why on earth do the tests? He explained that he wanted to follow a procedure to rule out things in an order. Because this sedimentation rate test was elevated, he was leaning more towards a bowel issue rather then allergy issue. I told him what I've been noticing lately with Wes' BM's and how some food has gone undigested. I think that made him lean even more towards that side. He wants to put Wes on a digestive enzyme to see how that helps. It's called Ultrase MT. Today he had his first dose and C (at school) reported that he was excessively gassy. He also repeatedly asked to use the potty at school too. He doesn't often ask to use it. Tim and I have decided that we'll give it a week or two and if he still seems to be having an upset stomach, then we'll call the doctor to see what else we can do. Right now, the alternative is to scope him and check out his intestines, but we're hoping we won't have to do that to the poor child. He's been through enough poking and prodding.
So once again, I'm wondering what a GF/CF diet will do to him. I'm going to a seminar by a local DAN! doctor just to hear him out. I'm still not sold yet, which is why I'm going. I hate using meds when there might be an alternative out there.

Happy Birthday Little Bit!

2008-09-02T13:48:00.002-04:00

Happy 2nd Birthday to my Little Man. I can't believe he's two already! His birth was such a whirlwind because the day I was to be induced with Casey, we were having Wesley evaluated for services. Sometimes I feel like I missed out on the experience because Wes was always on my mind. He has grown into such a beautiful little boy with a mouth that doesn't stop. He makes me laugh with his crazy faces and hilarious antics. He's all boy and I'm proud to be his mom.

Rumble at the playground

2008-08-26T11:15:00.003-04:00

I'm not the kind of mom who jumps in on every scuffle my kids get into on the playground. I try to let them solve the problem themselves at first, unless someone is being physical. Conflict resolution is a big part of being an adult in this society.

It's an absolute beautiful day here today and I knew the playground would be busier then usual. Typically, there are a group of 3 to 4 mom's who meet up with their kiddos for some playtime. These mom's gossip, but keep an eye on their children. Well not this group today.

I knew from the moment we walked into the fenced in area that these mom's were here merely to chit chat and ignore their children. I was right. One mom in particular seemed less then interested that her children were being bullies to the other children. The first incident was one of the kids took a truck away from Casey. This is where I didn't step in. I wanted to see what Casey would do. Being the passive aggressive one, he just stood there and watched. After 30 seconds, he ran away to find something else to play with.
As I was trying to keep an eye on both boys, I noticed a little one, a bit bigger then Casey, come up behind him and shove him to the ground. Casey wasn't hurt, but he was stunned. After glancing to make sure Wes was alright, I took off after Casey. I picked him up, brushed him off and gave him a hug. Meanwhile mean mom came over and said that she just saw her little one running away and was Casey alright. Here is how the rest of the conversation went:

Me: Casey is fine, but your little boy pushed him from behind for no reason.

Mean Mom: Well he's non-verbal and doesn't understand. Sorry

Me: I understand what it's like to have a non-verbal child, but that isn't an excuse for him to push my son without saying sorry. I think it would be best for him to apologize so he understands.

MM: Johnny (made up name), come here please. (running after him at this point)
You made this little boy upset because you pushed him. We don't push our
friends. Say you're sorry.

At this point, Johnny is squirming and screaming.

Me: Thank you.

I walk away with Casey in my arms. He and I go to the sandbox and start digging. I don't want him anywhere near those kids. Five minutes later, there were two older boys from the group that were inside a crawl space under the equipment. They had two dump trucks. Casey likes to play with older boys so I just followed to see what would happen. Mean Mom's older boy screamed "Ewww, go away baby!" and threw dirt in Casey's face. Mean Mom was no where to be found (typical) so I stepped in. I told this little devil spawn that what he did was not nice and he needed to apologize right away for throwing dirt at Casey. I explained that Casey likes to play with older boys because they are fun. I don't think it mattered to devil spawn.

Shortly before we left, I noticed devil spawn terrorizing another child. He told the boy that he didn't want to play with him because he was "weird". On the occasion that Mean Mom stepped in, she just calmly told the boy he needed to share and to be nice to his friends. No discipline, no consequences for his behavior, nothing.

I had to fight back what I really wanted to say to this mother, but I'll let the future slap her in the face when her kids are older and wards of the state.

I no longer have to keep us both afloat

2008-08-23T12:08:00.002-04:00

This summer, C (Wes' para-pro) has invited us over to swim on many occasions. Wes was still pretty new with the whole pool/water thing. We had our downfall with a local pool, but he enjoyed visiting C and dipping his toes into her pool. Occasionally, she'd get him into the pool and make him realize that he can touch and everything is alright. He loved sitting on a lounger and floating around while everyone else swam.

After one failed attempt at a floatation device , I tried another . With a little adjustment, Casey was swimming on his own in no time. Of course, I'm always right behind him in case something happens, but before I knew it, he was turning on a dime and enjoying every minute. Wes on the other hand, was still a land lover. I figured that if I didn't just help him jump in with both feet (pun intended) that he'd never learn to swim and never enjoy the water like his brother. Being the mean Mommy that I am, I grabbed him, carried him a bit to the deep end and told him to kick his feet and swim to me. He caught on real quick but wasn't happy with me. As a matter of fact, he had this death grip like a boa constrictor. I gave him breaks in between the impromptu lesson and before long, he was asking for C and I to let go so he could swim. At one point, both C and I were in the deep end with both boys just swimming away. We kept some noodles handing in case we needed to carry them back to the shallow end, but they weren't needed. When it was time to go, both boys were not happy. Wes cried and nearly had a tantrum when he was told pool time was over.

I couldn't be more proud of my boys. I should know by now that with just a little push out of his comfort zone, that he'd succeed at this. Sometimes you just have to force the kid into taking on a task head on, even with the kicking and screaming. If you could have seen his face beaming with pride and the excitement on his face with every jump into the water, you would have made the same choice as I did. My one regret is that I didn't teach him sooner and now summer is nearly over. All the public pools have been closed for the season so he won't have as many opportunities before it gets too cold.

If you have a swimmer who's intimidated with the water, invest in one of those swim suits. They are great! And to think I debated on not buying them because it was the end of the season. Thanks Honey!

I won!!

2008-08-21T15:30:00.002-04:00

After pushing, pleading my case, and more pushing as nicely as I could, I won! Wes will have the same para-professional that he did last year. One constant in the next turbulent month. One familiar face, familiar demeanor and familiar love. I won a battle that is part the special education war. I feel triumphant! Wes' para-pro, C, has been wonderful. I really can't say enough about her. She knows exactly how much she can push Wes to get him to achieve his next goal. She knows that if she pushes just a little more then he wants to tolerate, he'll come out on the other side better then he was. I trust her. She taught Wes how to jump in a matter of two weeks, where I had no luck for months. She also taught him to use a big kid swing, where again, not me. Honestly, I don't think I could handle this year without her. Next year, I'll have to swallow hard and step aside for a new para-pro, I know this. But I'm not going to think about that right now. Right now, I won!

Okay, I'm better now.

2008-08-19T12:33:00.003-04:00

As my good friend told me, there will be ups and downs, just like the waves in the ocean. She's right. This friends life isn't all that different from my own. She, too has a child with a disability. She, too has one parent who works and one who stays at home. She, too knows how emotional this all can be. Our only differences are that her beautiful little boy has physical differences where as Wesley has behavioral differences. She works outside of the home while her husband takes care of their boys.

So, I just came from a really big wave that sent me really deep this time. I know there will be more, but I also know that the upswing isn't far away and I just need to look around me for the people who are trying to pull me up.

I have a lot of catching up to do! Last Monday I had a feeding and swallowing specialist come and meet with Wesley and myself. I've been trying to get someone for months to help me figure out his food issues and how to work around them. This is where the quick drop in the wave started. The specialist gave me an abundance of ideas to work with Wesley, but she mentioned how it would be easier if I did them alone, without Casey. I'm not sure if she understands that these two boys are attached at my hip with crazy glue. They don't come off. Not to mention that Wesley is a strong willed child. When he doesn't want to do something, he flies off the handle. That leaves me to not only deal with him while he's melting down, but to pick up the pieces when the tantrum is all over. Day after day after day of this can really take it's toll on someones emotional well being as well as psychological well being. We started yesterday using shredded carrot. He does an action (holding, smelling, kissing, tasting) 5 times for a count of 5. Each time, he gets a goldfish cracker. Once he completes two rounds, he gets to play with a special toy he's been jonesing for since he found it in my closet. I was saving said toy for his birthday.

Still waiting for school to start. As luck would have it, they decided to hold the Open House the day before school starts and that's Wes' follow up with the GI doctor. I'm going to sneak him in during the morning Open House for the A.M. preschool class. I still don't know who is para-professional will be. I'm drafting an email for the preschool coordinator because I want to know before school starts, not when it starts. I don't think these people know who they are dealing with. The boys and I have been taking walks over to the new school to play on the playground. I had a talk with Wesley a few times about this being his new school, but his same friends would be there with some new friends. All of his teachers will be there too. I'm hoping he understands and this will make the transition a bit easier. I'm debating whether it's a good idea to take him the first day or to let the bus take him and start the routine off right from the start. I really want to take him, but I know there are many changes for him already.

I'm proud to say that Casey has learned the art of swimming 2 year old style. I bought these Speedo swimming suits with built in floaters. We were invited over to Wes' para-pro's house to swim. Casey has become more and more comfortable in the water and this time, he jumped in and swam. It was an unconventional position but it worked for him. He was vertical rather then horizontal and his tiny little legs were kicking a mile a minute. Gradually, I had less and less grip on him, until I was just following him closely behind and he was swimming on his own. I'm so proud of him! His verbal skills are increasing daily. It amazes me that I can carry on a conversation with him and he responds. He's a pro at the art of manipulation at the tender age of 2. That's my boy!

Mom Overboard

2008-08-11T18:51:00.002-04:00

I feel like I can't breathe.

I'm alone.

Swimming in this ocean with no life vest.

To make matters worse, I'm desperately trying to keep my child above water.

I'm failing.

I'm trying to keep this persona that I've got it covered, I'm in control, that everything is going fine. It's not and I can't keep up that image anymore. I don't know what I'm doing. The moment I think I have Wes figured out and things are working, I lose it and they stop. These are the days that I feel like an inadequate parent and wonder what the hell God was thinking giving me a special needs child. I'm not equipped to handle him. I'm not even equipped to be a parent. I need to find peace in my life, but where do I squeeze that in?

Maybe tomorrow will be better. Maybe.

One poop at a time.

2008-08-06T12:49:00.003-04:00

Yesterday was Wes' appointment with the GI in Boston. We dropped Casey off with Nana and Auntie and we headed out. I was a little anxious because Boston traffic can be a nightmare and I didn't want to be late for our appointment. Luckily (and after a couple misses) we made it on time. The hospital was huge and a bit confusing. Multiple elevators later, we arrived.
Silly me didn't come as prepared as I should have. I only packed snacks and Wes' blanket. I brought the portable DVD player, but that was to play in the car. What was I thinking? Wes did relatively well. We only had to reprimand him twice for taking off down a hallway. It was 45 minutes between when our appointment actually was and when we were ushered into a room. Another (what seemed like a year) 5 minutes later, the doctor came in.
He was not really what I expected. He took the time to ask for the life and times of Wesley starting with birth. He asked us lots of questions and made sure to explain everything to us. I told him of my concerns and what I ultimately wanted to achieve coming to see him. I wanted to figure out Wes' bowel issues and correct them so he doesn't need medication for the rest of his life or until we get him to eat better. Which ever comes first. So our route was to test him for some common allergies and start from there. They are testing him for wheat, soy, casein, corn, strawberries, tomatoes, nuts, and that's all I can remember off the top of my head. Poor kid had 6 vials of blood drawn. He was not a happy camper and it took 3 phlebotamists and me to hold the child down. All in all, he was a trooper though. We'll be going back in 4 weeks to go over the results and decide our next step.
Someone recommended (not in his practice) that we have Wes tested for heavy metals. Again, I'm torn with this. I'm not sure if this Dr. would test for those and if he doesn't, that probably would mean going to a DAN! doctor. Both Tim and I are against chelation. We refuse to put our child through anything like that with the possibility of death just to change who he is. That's a tiraid for another day.
So that's that. Once we go to the follow up, I'll have more info to share.

Pool (un)party

2008-08-01T14:45:00.002-04:00

It's Friday. There's no school. No real agenda. Just, Friday. I wanted to take the boys to our community pool for a swim before lunch. The pool opens at 10 and I figured it would give them ample time to play and wear themselves right out.

There are multiple pools in this city, but only one that opens at 10am during the week. The rest aren't open until after lunch which bugs me. I know the city is on a tight budget and they don't want to pay all those lifeguards so I just deal. Anyway, the park that the pool is located is going through some changes. They are making a larger parking lot, which is needed, and updating the fields. The old parking lot is closed and people must park on the street. For some reason, this change didn't hit me until we had parked on the street and Wes started the climb that is a meltdown. We pushed through it. I loaded both boys into the stroller, grabbed our bag of towels and such and off we went down the path. As we got closer, I didn't see the little water toys on and thought maybe they weren't opening the pool this morning. I started to panic just a little. The closer we got, I could tell they were just getting it open and we were all set.

I pulled the stroller into the pool area and parked it in a corner. One of the lifeguards started the water mushroom , and this triggered the full on meltdown. Wes sat on the stroller, practically curled up in a ball crying and shaking while covering his ears. I was a bit confused because we had been to this pool multiple times this year and never had this problem before. What on earth was going on with him?! Casey ran into the water and started playing. He was having fun already, but it was no picnic for Wes.

I picked him up, stroked his back and started counting. Sometimes that calms him down. This didn't work. Over and over he repeated "shoes please" and "time to go". I told him that he would be okay but he just covered his ears even harder. I rocked and hugged him tight. I wasn't sure if I should get him to push through it or just pack up and cut our losses right there. I let him go back to the stroller and Casey and I swam for a little bit. I felt horrible letting him cry, but I felt just as horrible dragging Casey out of there after we just got there. What was I going to do? I decided to pack it up and go home.

While walking back to the car, I asked Wesley if the sound of the water hurt his ears. I didn't really expect a response but I got one. He looked me straight in the eye and said "yes". So I asked again just to be sure and I got another "yes". I knew that it must have by the way he was blocking his ears, he wouldn't open his eyes and of course the near screaming.

Then the flood of emotions hit. I felt horrible for not getting him out of there right away. I felt sad because Casey was having so much fun and we had to leave so early. I felt a bit irritated that that's one more thing we can't do this summer. I know that last one is horrible of me, but it's what I felt. I tried not to let that one show.

I hope that the start of school will help him organize himself and get him back into his rhythm. This summer was not very pleasant but I'm learning from it and next summer will hopefully be better.

Westube

2008-07-29T08:30:00.004-04:00

Here are two of Wes' favorite videos from youtube. He has some sense of humor.

Back from vacation

2008-07-29T08:13:00.003-04:00

We're back from vacation. I feel more tired now then I did before we left! We had a decent time although it was raining for most of the vacation. Our lovely state even suffered a tornado. New Hampshire doesn't usually have these kinds of disasters so it was a surprise to even the National Weather Service. We're all praying for the families who are suffering through this tragedy.

Meeting Thomas was a blast! The weather was mediocre. It was overcast but muggy. Thomas was front and center when we arrived at the station. Sir Topham Hat was there too. Both boy's face just lit up like a light bulb at Christmas when they saw him. Casey couldn't stop saying "Ook, Tas!". Translation: Look, Thomas! We stood in line to get a picture with Thomas which Wes wasn't too agreeable for, but we managed to get a semi-decent one out of it. There was a gift shop tent and we just had to visit. Sodor Island everywhere! The prices were actually pretty decent so each boy got a little something. Wesley got a CD for the car and Casey got a plate, bowl, and silverware set. He's into using forks and spoons now so that should work out well. Oddly enough, we've gotten him to try more foods just by giving him a fork.

Then it was time for the big event! Thomas was going to pull a train with us on it! Well, okay, not really. A diesel engine was pulling the train and Thomas for that matter but none of the children knew that. We found our seats which left about no room for our legs and our journey of 25 minutes started. The diesel engine sounded it's horn and clattered along the rail. Wes immediately put his hands to his ears and looked a little worried. Daddy was thinking that morning and suggested we bring his headphones and MP3 player along for the journey. That did the trick. He listened to his music and looked out the window. He even waved at others out the window briefly. Then there was Casey. Ah, my little boy. Full of energy and something else. He was not a happy camper to be just sitting on the train. Mommy had to reprimand him with some harsh tones. Once the train moved, he was better. Nearly falling asleep. That's what we get for scheduling this right before lunch and nap time. When the train pulled back into the station, we loaded off and headed right to lunch.

All in all, it was a great day. Just to see their faces was so precious. I hope he comes again next year. I'm not sure if they'll still be 'in' to him or not. We shall see! The rest of the week was filled with fun activities and day trips when the rain held out. It's back to reality now. Pics to come shortly.

Computer Savvy - Take 2

2008-07-24T12:59:00.002-04:00

This child is now becoming an aficionado with the home computer. Pretty soon, he'll bypass me in that department. He's taught himself the capabilities of the mouse. Moving the mouse moves the cursor and clicking the button brings you to somewhere new. He's been playing games on the computer for over a year now but could never get the hang of the mouse. Let me back up.

Not too long ago, I was in the kitchen making dinner and Wes wanted to watch Jack Johnson on youtube. At this point, I was under the impression that he still didn't understand the workings of the mouse. I heard the song coming to an end and told him I'd be there in a second to replay the song. The next thing I hear is the song replaying itself. Strange I thought but maybe there was some sort of glitch and I just let it replay. Song ends and starts to play again. Now I'm intrigued. As soon as I hear the end of the song, I sneak a peek through the doorway and wouldn't you know it! The little bugger moved the mouse up to the replay button and clicked. Needless to say I was amazed, but only for a short moment. Then I shook my head with a "figures".

He's moved on from using the mouse with youtube, to using it with games he's familiar with. He's even trying to navigate going to this favorites folder and making a selection. He's not familiar with that yet and here's an example of that.

I heard him banging on the keys and thought that maybe he was stuck on something or the pages wouldn't load so I went to check on him. I found him on Ebay bidding on a single engine airplane. An actually passenger airplane. It's time to put the child blocks in place.

Off Kilter

2008-07-15T14:08:00.000-04:00

The last 4 weeks have wreaked havoc on Wesley. It has been a long time since he's acted the way he's acting lately. There have been quite a few monkey wrenches thrown at him and it's all just too much. School ended (mid-week) and summer vacation started. I tried my hardest to warn him what was going to happen, but how do you warn a nearly non-verbal three year old about all the change that's going to happen. Summer program started two weeks later and the time and dates are different. He is only going three days a week for 2 hours a day. Instead of going first thing in the morning, he's going later in the morning until lunch time. Then I added cranial sacral therapy to his mix. Again, brought him to the office a couple of times and told him we'd be coming there once a week.

I'm seriously dreading when school starts again in August. Not only will he be in the afternoon class this year (12pm to 2:30pm), but it's in a new school all together. They needed to move the class because the preschool room is needed for the elementary school. This school is just a few blocks away too. They also want to give him a new para-professional for the new school year. Now I know that that practice is typical in elementary and up, but it was his first year in preschool, he started late, and he's still young. They seriously can not give him that much change in such a short time. I have pleaded my case and told them that we want the same para-pro come this fall. They're trying to fight with me about it, but I'm holding my ground. The boy just won't be able to cope. This is all new for him. If summer is throwing him off this much, then what will that do to him on top of everything else!

I can't fail to mention that both of my boys are sick. They both came down with fevers on Sunday. Casey worse then Wesley. I thought it might be hand-foot-and-mouth disease , but the doctor seems to think it's strep throat so we're waiting for the test to come back from the lab. I think this has thrown him off his game too. Poor kids. It was a rough night last night and I don't think Tim and I got much sleep. Most was interrupted by a 2 foot Tasmanian devil thrashing around in our bed last night. Casey slept in bed with us and that boy does not sleep soundly. A good portion of the night, I slept with a foot lodged in my back and Tim said he lost count of how many times he got kicked. Wesley climbed out of his bed and climbed into ours before our circus performer joined us. Unfortunate we only have a queen bed because it sure gets cramped with four bodies.

We'll be heading out for vacation next week if everyone can heal. We have plans to go see Thomas and Friends at a railway station up north for A Day Out With Thomas. We'll actually get to take a train ride with Thomas himself. I can't wait to see what their reaction will be when we see him. I'm a little concerned for Wesley but when am I not. We'll have lots of pictures when we get back!

Movin on up

2008-07-13T18:34:00.004-04:00

When little feet start hanging over the bottom of the bed, you know it's time to upgrade. He's officially out grown the toddler bed. I've been searching and searching for just the right bed for him. I wanted to get a loft or raised bed so that he can have a little hideaway underneath. It couldn't be too high, or too low. I searched online and found plans to make a loft bed, but I have neither the power tools nor the know-how to create such a bed. My search continued. We had a very strict budget (seeing as we're a one income family) so that played a huge part in my search as well.

I started looking on the famed site cr aigslist to see if such a bed was being sold there. I saw quite a few loft style beds, but they were either metal, or way to high for a three year old. I came upon a great looking loft bed complete with a slide and hideaway curtains underneath. It was nearly perfect, except the price. My mom offered to purchase the bed for us and I was excited, but something just kept nagging at me that this wasn't it and I should continue searching.

Finally, there it was. The bed I had been looking for. It was perfect and exactly in our price range. The bed is from Ikea. The person selling it had recently bought it for her son and he hated it. She said her loss was our gain and boy was she right!

Tim and I immediately started to put this thing together. It had what seemed like 100 parts and a small case full of bolts, screws, and what have you. The directions came with no words, only pictures. Fortunately for us, we figured it out pretty easily. I ran out to buy new sheets and pillow cases. We already had a sports comforter that we bought for the toddler bed. It was a twin size and just too big. Soon after we put it together, Wes was climbing up like a pro with a huge grin on his little face and giggles spewing from his mouth. He loves it!!

It's been a week now since he's been in his big boy bed. He pretty much stays in the bed when he goes to bed, but occasionally gets down when he should be sleeping. I tucked his bookcase and his toy box underneath. I plan on putting some curtains up underneath so he can tuck himself away under there and have a place to call his own. He hasn't gone under there yet but I'm sure he'll work up to it soon. The best part is that Casey can't get up there so Wes already has a retreat to call his own. He looks so tiny up there all by himself and it makes me sad that my baby is in a huge bed, but I still have Casey. That poor boy will be in that crib until I can part with him not being a baby anymore. I should start calling therapists now, I suppose.

The room looks bare because now I have to redecorate for Sports rather then Thomas and Friends

Where is he?!

2008-07-09T20:47:00.003-04:00

If ever there was a premonition, I certainly had it yesterday. Yesterday was the first full class summer preschool and boy were there some hitches. When I went to drop Wes off at 10am, there were five Sp.Ed buses pulled up along side the school. Some kids were being dropped off, some were in the wrong spot to be dropped off and three were picking kids up. No one had any idea who was going on what bus, and were the other buses should be. I thought to myself Crap, and Wes will be taking the bus later this afternoon. What if he gets lost in the shuffle? Thankfully, he made it home safe and sound. What a relief.

Today was typical drop off. Things looked to be going more smoothly and calmly. I felt much better today. I brought Wes over to his hook, gave him a kiss goodbye and dragged Casey kicking and screaming out of the school (He wants to go to school. I think so he can carry a pack pack too). Casey and I went for a little ride to escape the dripping heat that has blanketed our area. I made him lunch early because he was very cranky and we had plans for the afternoon. After I put him down for nap, I went outside to sit on our stoop and wait for the bus.

12:15pm came and went with no sign of the bus. I started to panic slightly. I grabbed my phone and called the dispatcher at the bus company. She put me on hold to find out where the bus was. Her response was that Wes was never put on the bus. No one brought him outside. Okay, panic set in a little more. The school hadn't called me to say he was still at school and I had a cranky 1 year old sleeping upstairs. What the hell am I supposed to do?? The dispatcher said she would call the school again and find out what was going on. Now, at this point, I'm nearly in hysterics with a slight panic attack happening. Where the hell is my child?! After a dropped call and being hung up on, I finally reached the bus company and she told me that Wes was indeed on the bus and would be home soon. Now mind you, this is at 12:30pm. After ten minutes of hyperventilation, I called the company again and demanded to know where my child was and when he'd be home. The dispatcher told me that he was at the other end of town and it would probably be 10 more minutes before he was home. I lost it. I blew up and told them that this was unacceptable. He was a special needs, three year old who doesn't speak! I am a frantic mother who isn't getting answers and all I want is my child!
Finally, at 1pm (an hour after school ended) my son arrived home unscathed and extremely sweaty, otherwise, no worse for the wear. The bus driver saw my face and nearly burst into tears herself. She apologize profusely and asked me to please put my faith back in her that she will never forget my child again. She told me that one of the aides told her that Wes was out today while another one put him on the bus. She assumed he wasn't on the bus and just kept going on her route. When dispatched called her, she said he wasn't on the bus. Now, mind you, every Sp.Ed bus has a monitor. Neither one of them noticed my child was sitting in the second row of seats until they were across town.
I want to know who told the driver that my son was sick. I want to know why she didn't do a head count before she left the school to make sure everyone was accounted for, and I want someone held accountable for all of this. I'm considering making them change him from the 10am class to the 8am class so I can pick him up and drop him off for awhile. The reason why I have him take the bus home is because Casey usually is down for his nap by 11:30-12 and would be so cranky at pick up. I figured it would work out perfectly.
I was just so glad to have him home. What a nightmare!

Second Session

2008-07-03T19:44:00.002-04:00

Wes had his second session of Cranial Sacral therapy. I'm still unsure exactly what it is, but it certainly is interesting. His first session did not go as well as the second. He didn't want to be touched at all and nothing was distracting him. He didn't want to read M's (the therapist) books or play with her toys. He just wanted away from M and tried to escape the room a few times. The second time around, I screwed on my Mommy Brain and brought his MP3 player, blanket, lap top toy, and a couple of our books. He was more relaxed and allowed M to do her thing. She said she felt quite a few 'hot spots', whatever that is. She also worked a lot on his stomach area and said she felt some back up in his intestines which could mean constipation. I told her that after the first session, he was pooping two times a day which is not normal for Wes. We even forgot to mix in his Miralax a couple of days and he was still going twice a day. Her work made him super gassy and I was a little bit embarrassed. M didn't seem to care.
At the end of the session, Wes had had enough and was starting to kick and hit M. I tried my best to control his aggression, but I knew he wasn't going to stop. He had reached his threshold so we ended a bit early.
M really thinks this is going to work for him. I wish I knew how or why but I just can't seem to grasp what it is she's releasing. My wonderful mother-in-law has done or is doing cranial sacral and she swears by it. Wes' aide in school does it too and she loves it. Both have had some amazing results health wise so I guess we'll see!
I'll be sure to update again after a few more sessions.

Aaahhhhh

2008-06-30T12:49:00.003-04:00

I got to read a magazine article today. I whole article! Granted, it was from an old magazine, but still! I haven't read an entire magazine article in it's entirety since Casey had surgery a year ago. Boy did that feel good.

Time to get Zaney

2008-06-29T19:26:00.003-04:00

One of our local favorites came home yesterday to give two outstanding performances. Dan Zanes has become a favorite around here. Particularly his song "Hello" . Some of you might know him from his early The Del Fue go days, while most parents know him as the lovable singer on Nickelodeon's Nick Jr. Mr. Zanes has done this for a couple of years now. Ticket sales benefit The Friendly Kitchen which is a local soup kitchen. I believe Mr. Zanes mother runs the Friendly Kitchen.

Our very good friends Kelli, Mike and their two boys, Chase and Carter (you can find them in the blogosphere here ) joined us for the 4pm show. The performances were done in the high school theater with no A/C so needless to say, it was very hot and muggy. The boys did exceptionally well. They all behaved themselves and enjoyed the music. About an hour into the show, all of us were hot and sweaty and decided to bail. Friendly's Ice cream, here we come! The skies opened up and poured down while we all enjoyed some yummy ice cream. All except our boys who don't really care for ice cream ( I know, can you believe that that's possible? ). They both had meals. Casey chugged nearly an entire cup of milk and proceeded to throw up at the end of the meal. What a great way to end a great day! Enjoy the pics (courtesy of Kelli since my camera sucks!)

Apple doesn't fall very far

2008-06-23T16:59:00.001-04:00

Since Wesley has been diagnosed and I learn more and more about autism, I start to wonder. I know all of us have sensory and autistic tendencies, but I wonder just how much is a tendency and how much makes you actually have either of those.

I'm sharing deep here so bear with me for a moment. I've always felt socially awkward. In grade school, it wasn't always easy for me to make friends or make myself available to make friends. Even now in adulthood, I find myself wishing I could join the other Mommies on the playground, but I don't know what to say. I found it difficult to go up to people and start conversations. In my mind, the starters never sounded smart or eloquent. Maybe they aren't supposed to be. Eye contact was never especially easy for me either. I try hard to make and maintain eye contact, but sometimes it's just overwhelming and I have to look away. I know how Wes feels and how much he's achieved with that small feat.

Social ques are tricky too. I pick up on them, but don't always interpret them correctly. Tim can attest to that I think. I don't always 'get it' when people are sarcastic and sometimes my joke aren't understood either.

There certainly is a bit of OCD here. I like things the way I like them and sometimes to such a degree that Tim and I argue. I can't stand clutter and crumbs being everywhere. I'm not the best housekeeper, but when they start to pile up, I go on a bender. Clothes need to be washed, dried, and put away. After eating, the table must be washed, chairs cleaned off and floor swept. My wonderful husband doesn't see the need. He's not OCD. I also feel much better when I know what's going to happen. If we make plans, I like to know where it is we're going, how long it takes to get there and get home, how long we're going to stay, and what can I expect there. Not as bad as it sounds, but I still like to plan. It makes me edgy when a monkey wrench is thrown into the plans. I'd say Wes has the same issue but to a more larger degree.

Does all this mean I may be on the spectrum somewhere? Maybe. It certainly leaves a bad taste in my mouth because the blame game starts. Am I the reason for my son having autism? His genes came out clean in the wash (he's been to a geneticist), but maybe there's something else there. Food for thought.

Climbing on the soapbox for a moment

2008-06-20T14:28:00.000-04:00

For those of you who read my blog, you know I rarely ever talk about news stories or who said what or did what in the topic of autism. With the exception of Ms. McCarthy, but we won't go there. I've had just about enough of these stories about our exceptional children being disregarded and tossed aside in the schools.

The most recent, a story of an elementary school leaving out the special needs students and special needs teachers in a year book. Okay, so maybe, just possibly, it was a mistake. Did it seriously take a nation of angry people to get you to realize it and fix it?

And how about this one, a special needs kindergartner was voted ( Survivor style) out of his classroom by his teacher and his peers. Little did the teacher know that the mother had sent her son to school with a digital recorder hidden in his clothes because he had been complaining about this teacher.

On a bulletin board I sometime visit, there was a post from an actual teacher complaining about a child who is special needs that had been crying in her classroom. So what did this teacher do? She put her out in the hallway and locked her classroom door because she didn't want to deal with it. You bet your ass I posted a comment.

This wonderful blogger here writes about her beautiful boy and her struggles with his school system. It just sickens me with what she has to deal with just to get her son included! And it's not just the school, it's the parents as well! How sad this should make all of us.

Why aren't our children treated like everyone else. No, they aren't like everyone else, but who is? I'm glad my son is different. I'm so happy that he's given me the chance to see this world in a whole other light that some aren't able to. And on the flip side, I get to experience a typical child too (God give me strength). Our children, our extraordinary children, have turned this world on it's toes. We, as parents, will not let them sit in the back of the classroom or worse yet, in another room, and not given the same opportunities to achieve and show the world what they are capable of. I can't speak for everyone, but damn it if my son doesn't surprise me with what he can do every day. I hope that never changes. I hope that every parent who has an extraordinary child allows their child to surprise them every day. Cherish those. Refuse to let anyone tell you different. They are in those tiny bodies just begging for someone to help let them out. It takes more than just the parents. It takes family, teachers, and the community. Remember the saying "It takes a village to raise a child", so include my child.

Okay, stepping down. I feel better.

Our next venture

2008-06-17T13:35:00.002-04:00

We're moving on to trying something new. Cranio Sacral Therapy. I've read into it, but still don't quite understand it 100%. What I get is that it's a manipulative technique kind of like chiropractic care. There is a wonderful mother in an autism support group that we belong to that has tried this with her son. I've been in touch with a therapist and they will do one session free to see if it will work with Wes. I'm not sure if one session will show anything so we're willing to do a few sessions. Luckily, they accept insurance and New Hampshire Medicaid so we won't have to come out of pocket (keeping my fingers crossed).
I guess I'll understand it more when I see how it's done and talk to the therapist more about it. My theory is I'm willing to try anything that doesn't involve pumping Wes with medication. A massage can't hurt can it?

Look into the future

2008-06-16T16:46:00.002-04:00

I had the opportunity to glimpse into Casey's future today. I must say, I'm not really surprised at what I've come to realize. My son, my baby is going to be a nudist. That's right, a naked all the time person. He hates clothes and I mean all clothes. Shoes, socks, pants, shirts, hats, you name it. Today, while I was filling up sippy cups, he removed everything from his shirt to his diaper. Totally nude. I wasn't in the kitchen that long so this child is good. He takes off his shoes whenever he can and the socks soon follow. This removal of clothing is new, however, and I see it as the trend. I just look forward to the morning when we enter his room and his little naked butt is the first thing we see.
Lord help me.

First Field Trip

2008-06-12T16:50:00.000-04:00

My big boy went on his first field trip today. It was to a local small (very small) farm for some animal petting and ice cream! The baby cow's were a big hit with him. He even went so far as to go nose to nose with one of them. When his aide ushered him to another animal, he threw a hissy fit and wanted to go back to the cows.
The kids LOVED the ice cream. Wes doesn't eat ice cream but he will drink a shake so I bought him one so he could join his classmates for a special treat. Here are some pictures of the excursion.

Mom and Dad's night out

2008-06-04T14:37:00.002-04:00

Thank you to my father who was kind enough to find Tim and I four tickets to see our beloved Boston Red Sox. You always come through for us!

It was Mom and Dad's night out last night and we have been looking forward to this. Tim and I are devoted Red Sox Fans. If you don't know, it's not just about being a fan, it's about being a part of Red Sox Nation. The 39,928 seats that occupy the stands and the Green Monster are always filled. Sold out every year. These fans aren't just fans, they are family. They live, breath, eat, sleep, and die Red Sox. To be a part of that family, even if it's just once a year, is awesome. It's steeped in history from Ted Williams to Babe Ruth. The curse that lasted 84 years until our son was born in 2004 (hey, we can dream can't we?) named after the trade of Babe Ruth to the Spankee's. The Curse of the Bambino. For some, it's family tradition. They went as kids, and now they bring their kids. It's Bostons (New England's) playground. It's our Disney World and for some, it's their church. You'll never understand until you go to a game and see for yourself. It's like nothing you've ever seen before.

From the Fenway Franks to the near $7.00 beers, we'll go every year if we get the chance. It just doesn't get any better then that.

Go Sox!

Therapeutic Listening

2008-06-03T13:58:00.001-04:00

It's been about 2 months since Wes has started doing the Therapeutic Listening and it's going great. In the beginning, I cut it back to once a day because he seemed to be lacking focus at school and really off his game. Especially in circle time. I thought it wasn't working, but I was wrong.
I kept getting reports home from school that Wes was not paying attention in circle especially, and very distracted by outside noises and such. Of course I started to worry because the last place I want him to lose focus is at school. I consulted 'J', the OT and she told us to cut back to once a day but not to worry. So, I did just that. He could only tolerate 10 minutes at first, but quickly worked his way up to the full session. He would run upstairs and hop on our bed when I said it was time for his music. He loves it!
I gave my reports to his OT and come to find out, the listening is working. She said the first sign is that the realization that there are outside factors going on and he takes notice. He was distracted by a truck backing up next to the school, or some kids walking in the hallway. He never paid attention to them before because he either didn't really hear them or he didn't see the point in hearing them. I don't mean hear as in taking the sound into the ear. I mean hear as in taking the sound into the ear and processing it in the brain. His hearing is just fine. It's what he does with the sounds he hears.
When we're in a store and someone comes up to him, he looks right at them and smiles or giggles. He's never done that before either. Those people just didn't exist to him in his world. The kids in the playground are showing purpose to him. He watches their play and sometimes, just a smidgen, joins their activity. It's small like looking for attention from them, but that's a huge accomplishment since the start of school.
He's moved back up to two times a day with the music and shortly 'J' will change CD's and give him something new. He will do great things one day. He does great things every day.

At my wits end

2008-05-27T12:04:00.000-04:00

All bloggers out there, I need your help. I'm at my wits end with this issue and I'm not sure what else I can do.
Wes is spitting. Not saliva spit, but spitting water. He takes a big swig from his cup, and then lets it dribble out all over himself, soaking his clothes. He used to do this last summer (hhmmm, maybe there's a clue) but stopped when he started school. So far we've limited his cup use, put him in time out, he can only drink in front of us, made him keep his cup on the kitchen table, but nothing is working.
Today, after he finished his water, he stole Casey's cup and used that to spit. Do I have to take Casey's cup from him too? He only does it when we aren't looking, which drives me crazy because he's being sneaky and I can't watch him at all times. Is he doing it because he knows we will get upset? I give him as much attention as I possibly can, is he looking for more?
Someone help me. I was so angry with his actions that I sent him straight to his room after lunch. He knows I'm angry. I can tell in his face and it kills me that he sees me in that light. I know it shouldn't, I'm Mom after all.
I'll take any advice anyone has.

Casey has groupies!

2008-05-23T17:59:00.000-04:00

I brought the kids to the park for some energy burning today. The weather has been on and off rainy and rather chilly for the end of May. Today was warmer so it was time to get outside.

We went to our regular hang out and to my surprise, it was very quiet. That's a good thing because it's easier to keep track of the little heathens. There were some older kids running around (and by older I mean 10-11) and these two girls would pat Casey's head as they ran by. A short time later, I was pushing Wes on one of the swings and noticed Casey trip and fall on the opposite side of the climbing structure. It's completely mulched so no chance he got hurt too bad. I see some feet run over to him, pick him up and dust him off. How sweet! But it didn't end there. Two girls and (how 'bout that) a boy doted on this child from then until we left. They followed him around, went down the slides with him, pushed him on the swings, tickled and chased him all around the park. I wondered if I should pay them for taking care of him. He ate up every second of their attention. All I could do was laugh and think to myself how he looked like a celebrity with his followers (or groupies) close behind.

My boy is such a ham!

All Aboard!

2008-05-22T10:14:00.001-04:00

We're very excited here in New Hampshire! Thomas and Friends are coming to town in July to the Conway Scenic Railway and we're making a date to meet them. Especially now since both boys are infatuated with Thomas. Casey flips out whenever we see anything Thomas. A couple months ago, I was in Toys R Us, buying some baby locks and on a shelf was a Thomas area with blankets and such. Casey immediately stood up in the carriage and nearly jumped out at the display, all the while hollering "Tas! Tas!" .

I'm really looking forward to bringing them and watching their faces. Wesley's especially. I'm not sure what he understands between t.v. and real life. Will he be excited or will it just be too much for him?

I'll be sure to blog and post pictures after the adventure.

Government Approved

2008-05-17T19:08:00.000-04:00

A wonderful lady from the Special Medical Services called me yesterday to find out what Wesley really needs in terms of his care and what services they can help us find, or provide. It's the first (or maybe second) time that I felt like I was talking to someone who knew their stuff and could really get us more help with Wes' issues. His biggest is feeding and swallowing. Like clockwork, every time he eats, he stuffs his mouth to the point of gagging and choking. And just like clockwork, I have to fish food out of his mouth before he vomits. Yes, we cut up his food and we monitor him eating, but I can't sit down and watch him like a hawk. He also doesn't chew his food completely and that also can cause him to choke. Just another thing on the long list..

So this wonderful woman is setting him up with a feeding and swallowing specialist and not just a nutritionist. That is what we need to focus on before we can really manage his nutrition. I had been toying with the idea of taking him to an Ear, Nose and Throat specialist because, to me, it seems like he has a narrow throat. I could be wrong though.

During our conversation, she asked about Medicaid and whether we had applied for it. There is a program affectionately called "Katie Beckett". This program was set up for children who don't qualify for Healthy Kids, but have a severe disability that impairs their everyday life. I had applied for this back in April and was told it could take 90 days to hear back from the state. She offered to check a list she gets with approved children and sure enough, Wes' name was on that list. WOOHOO! I got a letter in the mail stating that he was approved and that we will be getting all the documentation along with his cards within the week. I am sending Wes' new pediatrician an email letting her know we are approved so she can write prescriptions for diapers and for Pediasure . It will be a huge help for us financially as diapers are expensive (especially when you have two kids in diapers).

On another note, today Casey and Wesley were playing with their new ball pit . Casey was pushing against the back towards Wesley and at one point got a bit too excited. Wesley hollered out at him "No, Casey Joseph. Stop!" I looked at Tim in amazement. That's the most clear, and appropriate sentence he has ever said! The music really seems to be helping.

Socially Acceptable

2008-05-15T13:04:00.000-04:00

I received an update from the school about what Wesley is working on with his 1:1. I couldn't be more proud of the boy. This report comes from the Behavioral Consultant for the school. He is the one that sets up the programs for all the special needs children. I want to share with you the report on the social piece.

"Wesley is showing an interest in his peers. He enjoys being part of a group; will watch his peers; and is just beginning to follow the lead of peers during familiar activities. Today, the children did Row, Row, Row your boat with a peer partner during circle time. Wesley initiated this game with the boy who was sitting next to him and the two boys played the game very well together. This is the first time I have seen Wesley initiate a social interaction with a peer and then actively engage with the peer for a period of time. "

Holy shit! He initiated! He took the opportunity to turn to the child beside him and engage in play. Again, holy shit! My one and only question about this scenario is, was the child Z? As I've said in the past, he has this awesome connection with Z and Z just seems to 'get' Wesley and accepts him for who he is. If it was Z, then that's good. If it wasn't, then that's incredible!

Yesterday, we ventured to a new park in the next town over. Casey was babbling away to this adorable little girl who looked at him like he was speaking Chinese. Wesley came over and patted her gently on the head, giggled and took off running. He again initiated social contact. It may not have been appropriate, but it happened. I was so proud of him.

I'm looking forward to the next two years of preschool and he can accomplish during this time. It's a very important time because this is where he will build most of the skills he needs to move onto Kindergarten and beyond. This is where he'll be pushed and protected all at the same time. There is nothing this child can't work through.

Church Goer's

2008-05-12T13:58:00.000-04:00

We don't always go to church and I wouldn't say it's a number one top priority given Wes can't handle all the sights and sounds, so we go very little. We'd like to go more, but again, Wes has a really hard time. Yesterday we wanted to go to see family and make an effort, but Wes came up again. What could we do to make it easier on him and us. Then it hit me! I have Jerry Grasso over at My Autistic Boy and Other Adventures in Fatherhood to thank. I remember reading that his son Demetrius has an MP3 player that he uses at school to get through the lunch period. Maybe, just maybe that would work for Wes in church. I was 95% sure that it was the organist and the singing that threw him into a tizzy. So we set off to church with bags of snacks, fidget toys, and the CD player with Laurie Berkner thrown inside. When we pulled up to Church, Wes started to get upset. We managed to get him into a pew and threw the headphones on. As soon as the Laurie started belting out her folksy tunes, he immediately quieted down and remained that way for about 45 minutes. Once the CD had gone through it's rotation, he took off the headphones and did a bit of echoing, but was great!
We finally found a trick that we'll keep in our bag. The boy (only being 3) might be spoiled with his own MP3 player filled with his songs. It's smaller and easier to carry around. We'll have to get him used to smaller headphones I think because we used the ones that went with the Therapeutic Listening CD and they are huge.
Autism is such a learning curve for everyone involved.

Happy Mother's Day!

2008-05-11T13:47:00.000-04:00

I received my first homemade mothers day gift from Wes. They are such beautiful flowers. Tim and the boys made me French Toast for breakfast and we were able to get Wes into church without much fuss. More on that later.

Happy Mother's Day to all the special mom's out there. I hope you all have a terrific day today!

What was I thinking?

2008-05-08T18:22:00.000-04:00

It was another beautiful spring day, and despite my migraine, I wanted to take the kids to the park. I think they're getting bored of our usual park which is fenced in and just big enough for lots of play. Because of that, I wanted to take them to one we haven't been to in quite sometime. Whites Park is one of the many parks in our city and it's the largest. It has a huge wooden climbing structure and it's hard to keep an eye on the kids at all times. I thought that Wes was really good at staying in one area and has been coming to find me if I call him, that we would give it a shot. Bad idea. It wasn't busy by any means, but it was brand new for Casey and he wanted to explore every nook and cranny. That made it more difficult for me to keep track of them both. Mind you, I'm not one of those mom's who sits on her butt and talks on the cell phone from the time they arrive until it's time to go. Casey was off on an adventure and I couldn't find Wesley, nor could I hear his ear piercing "eeeeeee". I called him a couple of times, and then I heard it. He burst into tears and starting nearly hysterically crying. I grabbed Casey and ran to find him. He ran towards me crying and I just scooped him up and looked him over from head to toe. I couldn't find anything wrong with him, and of course I couldn't ask. Well I did ask, but didn't get a response. We left after I got him to calm down a bit and he settled all the way on the drive home.
I have no idea of he hurt himself, if someone hurt him, or if he got scared at a kid yelling and running. That really sucks! My mother instinct tells me that I'm nuts and should have been watching him at all times, while my realist side says that you can't watch him 24/7 and he has to learn. Which side is right? He can't explain to anyone if something is wrong or worse if he gets lost. It certainly is a park where you need two sets of eyes, especially if you have small children. Needless to say, we won't be going back to that park anytime soon unless Tim and I go together. And again, I feel sorry for Casey because he was loving it.

Nothing like Home

2008-05-01T19:00:00.000-04:00

Taking two showers a day - Wonderful
Sleeping in late - Tremendous
Eating adult food - Delicious
Seeing adult attractions - Exciting

Returning home to our beautiful boys - Priceless!

Leaving Las Vegas

2008-05-01T18:58:00.000-04:00

We're back from our excursion to Las Vegas. It was a great trip. Tim had quite a few sessions for work so I did a lot of sightseeing myself. Las Vegas is great! If you've never been, it doesn't seem like there's much to see except hotels. You're wrong. There is so much to see that 4 days just didn't seem like enough. There's much more on the outside of Las Vegas that we didn't get to see. The Hoover Dam , Lake Mead , and a bit of a drive but The Grand Canyon . We certainly plan to go again.
We stayed at the Retro Chic Imperial Palace Hotel and Casino . Tim thinks that within a couple of years, it will be the next hotel demolished or revamped big time. It was um, antiquated to say the least. The price was great though and all we really did was shower and sleep there. Otherwise we were out and about. We saw Cirque Du Soleil Mystere at Treasure Island Hotel and Casino. Fantastic! I highly recommend seeing one of the Cirque shows if you go to Vegas. You won't be disappointed!
It's nice to be home, but it was hard to leave. It really is a wonderful place to visit!

What's Happenin?!

2008-04-22T13:39:00.000-04:00

I need to be better at blogging. I've been so busy lately, Wes is on vacation this week and Tim and I are getting ready for our trip to Vegas.

Oh, did I forget to mention that? Oh yeah, we're off to Vegas for 4 nights. Tim has a work conference and I'm tagging along. The boys will be staying at our house with my mom and my mother-in-law will be helping out in the evenings. We wanted Wes to be in his home because he'll be back at school and the more his routine stays the same, the better. This is really hard for me. I haven't really been away from him since I had Casey a year and a half ago and even then, I pretty much saw him every day. Otherwise, it was one night here or there. This time, I'm across the country and a 5+ hour plan ride away! Needless to say, I'm very anxious for many reasons. These thoughts keep going through my head and they make me more anxious. All the what ifs that plague me on a daily basis. I know the kids will be fine and they will have a ball with the Grandmothers, but... There's always a but.

Wes has gone to two birthday parties. Z's party was a big hit with him. He did a lot of running and scripting, but I managed to facilitate a good amount of play. The theme was Carnival and they had lots of cute carnival games, face painting, and balloon hats. Wes even ate a cupcake without the frosting! The second party was a flop. Tim took him to that one and he said no one really even noticed he was there. It was a combo party for both the little girl in his class and her big sister. They had a bounce house and some treats. Wes really enjoyed the bounce house. No one greeted him or even bothered to include him in anything. How disappointing. There will be other birthdays and even his own to look forward to.

Casey is going through that word explosion and boy is it amazing. Occasionally, I feel sad that we missed this with Wesley, but it's more important to enjoy it with Casey then dwell on what could have been. Just the other day, Casey pointed up the stairs towards the bedrooms and said "bwanet". I had no idea what that was until he pointed to Wes with his blanket and it hit me. It was the cutest thing. He's labeling everything and so inquisitive. It's such a precious time for me and I'm soaking it all in. He's still in the throes of the terrible two's. He really is exerting his independence and while I'm all for him doing things on his own, it comes at the most inopportune times. Ah, the joys of parenting.

Wes was approved for the summer program at school and will be going three times a week for 6 weeks, 2 hours a day. We knew he would from the beginning. I had a talk with his teachers and the preschool coordinator and told them I need more communication. The teacher has been writing in his book maybe once a month or even two months. No one really discusses things with me and some mornings, I feel pushed out the door. I'm going to come up with a checklist (I'll be contacting you for help on this J) so it's easier for them to let me know what his days are like and what he's currently working on. I want to be a part of his team as much as possible.

So that's all from this side of the street. I will surely post when we get back from our trip.

Day at the beach

2008-04-10T22:59:00.000-04:00

A near perfect day

2008-04-10T22:41:00.000-04:00

Tim took today off and what a near perfect day it was. I say near perfect because spending 2 hours in the Department of Social Services office was not fun. Wes went to school as usual, but after nap, we decided to take a field trip. It was finally shorts and t-shirt weather (for Tim anyway) and we were not staying indoors. Our trip was to the beach. The kids had some pent up energy from winter and needed to burn it off. So with shovels and pails in tow, we were off. The kids had a blast. After spending some time watching the surf and playing in the sand, we went to the playground for awhile. It was quite busy with kids. The only hiccup was Casey whining about the blowing sand. The video above is of the kids having fun. You might want to turn down your volume because at one point, I had to yell for Wes to back up from the water. Enjoy.

New doctor

2008-04-09T18:19:00.000-04:00

We just came from meeting with the boys new doctor. OH MY GOODNESS! I love her! She was incredible. I never knew a doctor could be like that! I was seriously waiting to be rushed and not really heard. She heard every word I said. She totally understood my concerns and agreed with me on almost everything. We made a game plan that we're all comfortable with and finally I know where we're headed. It feels incredible. We're going to work on Wes' bowel issues. She gave us a prescription for Miralax for his constipation, prescription for Pediasure , and a prescription for a multi-vitamin. We changed from Pediasure to Carnation Instant Breakfast because it was cheaper and seemed to have the same stuff as the Pediasure. I hope that our insurance will pick these up for us until Wes is approved for Medicaid through the Katie Beckett Waiver. She wanted to give us a prescription for diapers too, but I told her Medicaid will only cover diapers over the age of 4. Only 6 months to go for that.
We decided to put a referral to one of the best Special Needs Gastroenterologist in the state of Mass as a precaution. It can take 6 months to a year to get an appointment and we figured if Wes does well on the Miralax, then we can cancel the appointment. If he doesn't then at least we already have one. Sounds like a good plan to me.

I can't explain the relief and weight that's been lifted off my shoulders. I've been walking around lost for the past year and not knowing what to do next in terms of Wes' medical needs. His previous pediatrician wasted a year for him and that just sucks. But, no use dwelling over the past. He's on a better path and that's all I want to concentrate on.
Thank you again to 'J'. You know who you are and I can't thank you enough for mentioning this doctor.

Birthday Invites and Therapeutic Listening

2008-04-08T14:57:00.000-04:00

Yesterday, when I picked up the mail, I noticed a blue envelope with no address on it in our mailbox. It looked like a birthday card envelope and it had 'Wesley' written across the front. I opened it up and realized Wesley had his first birthday invitation and it was from his friend Z! I was so excited for him! It's a carnival theme and I can't wait to take him! I'm going in knowing that we might have to leave before it ends. I don't want Wes to meltdown from overload and ruin the festivites. I'm anxious to really work with him in this social setting. I'm not bringing the tiny monster (A.K.A Casey) so it will give me a perfect opportunity. That in itself might cause some overload, but it's worth it for him to be included in this. Oh Happy Day!

We started the TL tonight. He seemed a bit figidy and every echolalic but it was our first night at home. We will be doing it twice a day for 30 minutes. So before breakfast and an hour before bed. He enjoys listening to the music and occasionally he'll giggle. I'm going to keep a seperate journal of his changes to keep track. I hope we have good results with this.

Making Progress

2008-04-04T21:43:00.000-04:00

Yesterday was the meeting for Summer Program and to go over the progress Wes has made since starting school. He does qualify for Summer Program which we knew he would and we were told from the beginning. He shows enough deficit that he could regress over the summer. He will have 3 classes a week, each 2 hours long for 6 weeks. I think that's sufficient. It also gives us two days to do fun activities and join plenty of social situations.

So onto the progress. Wes has achieved most of his goals set for the first 3 months. The social piece was the area of least progress made. We weren't really surprised there. The other area, where he made satisfactory progress was in Academics. His goal was to label 3 different colors or shapes, and point to 5 different colors or shapes. While we all know he knows these things, he labels and points sporadically. They said they couldn't count that as achieved because he isn't consistent. I understand that. I don't like it, but I understand it. So all in all, he's doing very well. I'm so proud of how hard he works.

I asked his Speech Therapist at school if she thinks he would benefit from more speech outside of school. She said she sees such wonderful progress, that she didn't think it was necessary. She is working really hard on getting him to use more nouns and verbs, so we are doing the same at home. Slowly, we are introducing full sentences using both nouns and verbs. He will catch on quickly.

My mission this summer is to get Wes involved in lots social situations. It's not always easy when I'm by myself. Casey has become quite the handful and most times, I'm trying to keep him from running away or doing something he's not supposed to. The minute I get involved with Wes, I have to stop to drag a 1 year old off a chair or from running into the street. God love him!

WHOOPPIEEE

2008-04-03T19:53:00.000-04:00

Finally, enough snow has melted and the weather was decent enough to go to the playground! I've been waiting for this since November. I hate being stuck indoors and I hate being stuck indoors with two cranky kids even more.

Autism Awareness

2008-04-02T15:27:00.000-04:00

April is Autism Awareness Month. It's the perfect time to spread the word about autism and the special little people in our lives. We have ordered wrist bands from our local chapter of the Autism Society. We plan on passing them out to our friends and relatives to wear proudly. Tim and I already wear our pins and Tim wears the t-shirts we bought last year, plus we each have the car magnets on our cars. I don't keep Wes' autism a secret. Sometimes when strangers try to talk to him and he's off in his own world, I tell them. Whether they know what it is or not, he's part of our society so they're going to have to accept him.

I'll try to blog more about autism and autism awareness this week.

Going to the dogs

2008-04-01T12:44:00.000-04:00

There was a news story on Good Morning America this morning. It was about children with autism and service dogs. You can read and see the story here . The dogs that are used are typically Labradors. They are very kind, patient and friendly dogs. We had two different labs when I grew up.

While I find the relationship between boy and dog common, it's quite interesting how their bonding brought on great results with the autistic child. In my opinion, I think the child has an easier time reading the dog because they don't give facial expressions. Their body signals how the dog is feeling, and I think the dog can sense how the child is feeling by their body signals. The other thing I noticed was that the children were older then Wesley. I'd say 10 years or older. It might be something we look into as Wesley gets older. Of course money is a big factor.

What a feeling!

2008-03-29T13:07:00.000-04:00

This morning after breakfast, the most wonderful thing happened. While I was sitting on the couch watching the morning news, Wes brought over The Very Busy Spider written by Eric Carle for me to read. It's one of his favorite books along with Brown Bear, Brown Bear, What do you see? I started to read it and Casey came running over whining. He wanted to sit and read too. So I had both boys on my lap and read to them. Together. The three of us. My heart sprung from my chest, it was so filled with pride and love. What a magical moment. I am so in love with my children.

Kicking myself

2008-03-28T21:14:00.000-04:00

We just had a meeting with our new coordinator of our local Family Support Services. Wes had respite care while he was in the birth to 3 program, but when he turned 3, someone dropped the ball and the services ended. So we are setting them up to start again. That is, until I found out that because Wes isn't on Medicaid, he could be denied respite services. The reason for that is because the respite will be state dollars and not paid through Medicaid. So okay, give me the forms and I'll fill them out! Then the coordinator asks us how much we pay for diapers and Wes' Pediasure. She let us in on a little secret. All that could be paid by Medicaid. HOLY COW! Are you kidding me? Why didn't someone let me in on this secret before? If it's one thing that kills us financially, it's diapers. Lots and lots of diapers. $37 a box every 2 weeks and that's just one kid! I know it doesn't sound like a lot, but again double that up and add on another $37 a month for the Pediasure.

I was toying with the idea of Medicaid, but we have insurance, good insurance so I wasn't sure if we should. Well now we are! The coordinator is sending me the forms to fill out and I'll be doing it immediately. My plan is to make Wes sound as worse as possible without lying of course. We can use all the help we can get. He didn't qualify for SSI because we make too much annually. Damn government! I guess I feel better about taking the Medicaid since we got screwed with the SSI. Putting it that way makes me feel a whole lot better!

Autism: The Musical

2008-03-28T01:07:00.000-04:00

Wow. I'm sitting here and I can't think of anything else to say, but wow. I knew all along that our kids have more potential then society gives them credit for. Our kids can do amazing things when we tap into their minds. I feel even more blessed to be the mother of an autistic child.

Watch this movie and don't forget the tissues. I'm not sure how long it will be up on the website.

The Change Up

2008-03-21T15:45:00.000-04:00

I sat down last night with a very good friend who I consider to be my 'Super Woman'. I met her through our school districts support group. She has been so helpful to me since then. She continued that streak last night.

I wanted to pick her brain about Wes' medical issues and where I should go. I have been looking for a special needs pediatrician to help me navigate the crap that is autism. His current pediatrician is a waste of my time and keeps dismissing me and my concerns about Wes. His nutrition is horrible, he's having some bowel issues and the dreaded feeding issues. All of which I'm am being told he's fine and I worry too much. I need someone to tell me where I can go to figure out his issues. Kind of like 'what next?'.

J gave me a whole slue of names and numbers to help me on my journey. I've contacted a nutritionist, a gastroenterologist, and transferred the boys to a new pediatrician that she recommended. I'm feeling really good about all of this and I'm looking forward to solving more issues I know Wes has.

I can't thank you enough J. I just hope I can be of help to someone as you are to me. I'm going to make you a cape someday.

Can you hear me?

2008-03-11T23:26:00.000-04:00

The time change has done a doozy on my boys. They are both so off kilter that the whining is starting to make my ears bleed. It usually takes a few days before their little bodies are back on track.
Because of this, Wes was more agitated then I've seen him in a long time. He had a tantrum at school with the transition from school to home which he hasn't done in quite sometime. His aide was concerned until I reminded her of said time change. In the afternoon, he had his OT appointment. I let his therapist, J, know of his behavior and what was happening. I asked her to take it easy on him and he let her know the same thing in his own way. She decided to try Listening Therapy on him. J has taken a course and become certified to administer Therapeutic listening. She had tried the Therapeutic Listening with Wes in the past, but he refused to wear the large headphones. Monday, he decided they were okay. J played some music that was modulated. The music had high and low pitches alternating through-out. She had at first, Wes kind of had an odd giggle, but settled down and barely moved for a half an hour. J was very surprised by this given the way his day had gone. After the session she let me know what happened and asked me to keep a close eye on his behavior for the rest of the night.

Let me tell you, I was shocked when we got home. The vocal stimming and rocking had totally diminished. He seemed slightly more hyper, but he wasn't flapping his hands and screeching like a banshee. Tim noticed it too. Wow is all I can say. I immediately emailed J the next morning to let her know what we saw. She said that with his body being so disregulated due to the time change, this was major for him. It had regulated him so well that she wants us to continue to do it daily. She is ordering Wes some headphones for us to borrow.

I love my child dearly, but those vocal stims are enough to drive a sane person mad. They are loud and at times ear piercing. I have to remind him to use a quiet voice, but I know it's not that easy for him. He does these stims to regulate himself and keep his body in a state of awareness.

It will be interesting to see what this does for him

Exceptional Peepers!

2008-03-07T15:56:00.000-05:00

Boy was that appointment stressful, yesterday! The new optometrist was super nice, but his office was like visiting 1950. It was very small and located in an old house. The parking was just a driveway. Anyway, there was no updated equipment and no where to put Casey while the appointment was going on. I could feel my blood pressure rising with each passing minute. Casey was crying and squirming because he wanted to get down and Wes wouldn't sit longer then 30 seconds in the chair. Finally the doctor put on a slide show with pictures of Disney World from what looked like 1970. They were orangish in color from fading and the people looked like hippies on the pictures. Oh boy.
After about 5 minutes of the doctor trying to get Wes to identify some black and white pictures, it hit me. Uh, the boy knows his letters and numbers. DUH! Immediately, Wes recognized the letters and at one point was reading them from the 20/25 line! Holy Cow! How on earth did we get a child who had such vision? Even with covering one of his eyes, he could still read the lines.
So needless to say, there is nothing wrong with them. The doctor did notice a slight turn on two occasions, but told me it's nothing to be concerned with and to get him to look to the left to correct the alignment when the eye starts to turn in.
He also briefly checked Casey's and said his was fine as well. Now that that's over with..

I've been tagged!

2008-03-07T12:15:00.000-05:00

5 Most Frequented Websites
Local craigslist
Babycenter
Big Fish Games
Weather.com
Target

5 Favorite Foods
Chocolate
Sloppy Joe's
Mac n Cheese
Strawberries
Chicken Parm

5 Places I want to visit (never been before)
Ireland
Italy
London
San Fran
Aruba

5 Favorite Stress Relievers
Reading
Massage
Snuggling
going to sleep
baking

4 Favorite Movies
Princess Bride
Love Actually
Toy Story
Juno

5 Things you can do to make my day
Send me a letter in snail mail
Comment on my blog
Comment on my children
Listen when I speak
Respect me as a mother

5 People I tag
Kelli
Peggy
Amy
Lynn
Cindy

Tag! It's your turn!