Saturday, March 31, 2007

The Amazing Escaping Wesley!

Oh boy, have we got a problem. Wesley has learned to escape the playpen. The one place we can put him for time out and know he will stay put has failed. I knew this day was going to come, but I figured we had a few months left before he would even think of trying it. My, oh my has things changed with him.

We started using the play pen as a time out spot when Wes turned 2. It was perfect. He could lay down if he chose and think about what he did. We always made sure to explain why he was put in there even if there was a chance he didn't understand. We only made him stay in it for 1 minute. When that was up, we explained why what he did was wrong and make him apologize. Since we can't use his words, he gives us a kiss which is fine for us.

Well tonight, it was a marathon time out cycle because he just wouldn't listen. Well on the 4th time, he swung his leg over and climbed right out. Both Tim and I were sitting in the living room. The play pen is in the dining room. He ran right into the room with a huge proud grin. Neither Tim nor I could believe our eyes.

So we marched him right back into the dining room and placed him back into the play pen. 30 seconds and there he goes again! We've decided to continue to use it and if he climbs out, we will put him back in. There is no way we can expect him to sit on a chair or a stool and stay put. He just doesn't have the capacity to do that. The play pen was a safe, quiet spot for him to think.

I guess he's just getting older and too big for his britches!

Wednesday, March 28, 2007

Did he do what I think he did?

Today I had to take Casey to his urology appointment. Casey was born with Hydronepherosis which is a dilation of the kidney. His is severe but we have since ruled out reflux and a blockage. Today was just an update to monitor the fluid. The urologist said she couldn't be 100% sure that the fluid hasn't increased or that his kidney is just getting bigger. She would need to check with the surgeons to be sure and she has to run it by them anyway. She said if we don't hear from her next week, it's good news and to come back in 3 months. If we do hear from her, it's not good news and my baby will need surgery. Can I catch a break please!?!? Or maybe not to selfish, can my children catch a break?

When I got home with Case (my nickname for him, not a misspell honey), I put him down for nap because he was overdue and fell asleep in the car on the ride home. Tim was upstairs getting ready for work and I asked him to please bring the baby monitor downstairs when he was done. He said okay. I heard footsteps in the hallway and then on the stairs and thought he was bringing it down right away. A few minutes later, Tim called down and asked if I came up for the monitor. I told him no, but it was right on the coffee table. I told him I thought he had brought it down when I asked and he said he didn't. The only story we can come up with is Wesley. He must have heard me ask, went into our bedroom, unplugged the monitor and brought it downstairs. Since neither of us did it, we assumed it was Wes. I am in total disbelief. I wanted to test this theory of his listening. When he got up from nap, I handed him his dirty diaper and told him to put it in the trash. He grabbed it from me, ran into the kitchen and threw it in the barrel. I praised him up and down and he got a cookie for following directions.

Is this my kid? Is this my child that I thought wasn't listening and in his own world? Is he realizing that our world is just as cool as his and wanting to be apart of it? I am still shocked and will remain that way until this becomes a usual occurrence. Of course, I'm not putting much stock into it because today was a really great day behavior wise. He has been pushing in his chair when we ask him to. Even coming back into the room when we remind him.

Somebody pinch me!

Monday, March 26, 2007

Language Explosion!

Wes has had a language explosion lately. His vocabulary is just increasing by the day! We couldn't be more proud of him for the hard work he's putting in. In the last couple weeks he's said car, out, cake (for pancake), cookie, again, cracker, and water. Although they are prompted words, it doesn't matter to us. It means he gets it. He gets that he needs to use words to communicate what he wants and get exactly that. It's the first start to spontaneous speech. He will eventually realize that the words he repeats mean the things we are giving him. For example, when he wanted something more to drink, he would hand me his cup and run to the kitchen. I would say the word more, and he would repeat it. In return, he got more to drink. Well lately, he has been handing me his cup and spontaneously saying more. I don't have to ask him anymore!

We are working on more direction following as well. Wes has almost mastered putting his dirty clothes in his hamper before going into the tub. Before, he would throw them into the hallway. He can't be blamed for that. Tim thought it was funny and cute. Yes, it was cute, but not right. So in turn he taught him to put them in his hamper. Wes responds so well to Tim with commands. The new direction is to push his chair in after he's finished at the table. He has been doing great. He still needs reminding and sometimes help, but he's been doing it every time. Next is to throw his empty plate in the trash. We use paper plates because I don't have time to spend in front of the sink washing dishes and we don't have a dishwasher. Well we do and it's me. Anyway, that's our next goal.

Every time he accomplishes something or does something new, it renews my hope that we will make it through this. Slowly, some of my old hopes and dreams for him come creeping back, such as being an independent man, holding down a job, and taking care of himself. It's still a long road, and those things may never happen, but I can still hope can't I?

Friday, March 23, 2007

A little of something, a lot of nothing.

We came to the conclusion that in order for insurance to pay for ST, we need to be seen in the SLP's office. So for now, that's what we're doing. We've put Wes on the waiting list for ST through EI, but it's a 3-4 month wait. We'll just have to figure out how this is going to work. I feel horrible dragging Casey around. He doesn't sleep well anywhere other then his own bed. I can't say I blame him. So now I have to drag him to an office and sit there for 45-60 minutes of therapy. Tim said that he will take a few hours off every Thursday to watch Casey if he has to. He just might. We toyed with the idea of letting him wheel around Tim's office in his walker, but I'm worried he might get tired and cranky. Then what?

Wes' behavior has been horrific! He is not listening, and tantruming even more then ever. We met with the behaviorist on Thursday and he had some great things to say. He said he wants to take control (with my input) of Wes' care and therapy. I was more then happy to hand over some of the stress this has put on me. He is going to ask one of his Preschool teachers to step in and start with Wes' behavioral therapy until someone else is trained. I was so greatful to get the ball rolling! He is putting together a PECS board for us and told us he will put in all the time he needs to, to train someone fully. He is only granted 2 hours a month to train someone, but he's going to keep going until they are all set to care for Wes the way he needs it. He also said he was glad to see Wes such a busy and hyper boy. He said it's easier for kids who are awake and alert to learn then those that are totally lost in their own world and very quiet. That was good to hear!

Now on to Casey. He's cut his first tooth!! I knew it was the reason why he was so miserable and cranky the last few weeks. It's finally cut through the skin. I can barely feel it. My poor baby. It totally sucks that they have to go through this pain while they are so young. He's doing well so far and I don't see any specific signs that would lead us to believe he will have Autism too. We will keep a very close eye on him. I am considering having his MMR shot delayed when he turns 1. He won't be going to school for some time so we can delay it until we are sure he does not have Autism. Our other option is to separate the shot and give it to him one by one spread out over 3 months. That might be the one I go with. I'm not certain yet, but I still have 6 months to decide. I'm not sure if the MMR caused Wes' Autism, but I'm not willing to take that chance with Casey.

Wednesday, March 21, 2007

Back to Square One

We're back to right where we started with Speech Therapy and our insurance. The ST can not bill our insurance using an Early Intervention code because they are a private practice and not affiliated with EI. We, again, have no coverage for ST.

I called our insurance for the umptheenth time about this and was told that unless it's coded under EI, it will not be covered. The rep kept calling it a developmental delay and at the third time, I lost it. I yelled at her that it was a neurological disorder and NOT a developmental delay. I told her that he was officially and clinically diagnosed as having Autistic Disorder which qualifies him as having a disorder. I told her not to call autism a developmental delay again with me on the phone and that she needs further educating on this. I'm sure I was out of line, but I've had it with being told "No".

There is that law called a parity law that states they need to treat autism like any other disability, but there might be a loophole there. They only cover OT, ST, and PT if there was an injury that caused the speech delay. So they might not cover any disability with OT, PT, or ST. That's something we need to look into. We're also pursuing an appeal process with our insurance company to get him covered for these services outside of EI. I've filed a grievance and we plan on filing one with our States insurance and health department. We're leaving no stone unturned.

Right now, we will be paying for ST out of pocket because Wes needs this and I won't wait 3-4 months for EI to get him to the top of the list and find someone to work with him. He needs it now, not later. We will figure it out and keep all receipts in case we win the appeal and can have them paid for later.

I'm already feeling beat by this. What we do for our children..

Tuesday, March 20, 2007

Stop the ride, I wanna get off!

These roller coaster of emotions has got to stop! I can't take it anymore. I used to be a person who had it all together. I knew where I was headed and I knew where I wanted to go. I was in control of my life. I have no idea anymore. I don't even know where I'm going tomorrow. Control is now in the hands of Autism. This horrible, mystifying disorder that controls my son's life, my life, my family's life.
Just when I think I have things under some sort of control, I turn around and realize I never had it to begin with. I am in a good mood, I know where we're headed in Wes' treatment, but something new pops up and it's gone in a flash. A new therapy is introduced or mentioned and I start to spiral again, thinking, why on earth didn't I find this out before. Why did I wait to find this out. Are we too late to start? Will it work for Wes or are we wasting precious time on this when something is better out there.
I will fully admit that I have never cried so much in my entire life. I am actually crying at least, at least, once a day. That's a good day for me if it's only once. I just think of how, why, where? How did he get this? Why him? Where did it come from and where do we go from here? Little things set me off on a crying jag. I have never felt so lost in my life.
I worry every day about Casey as well. I know deep in my heart that I can't give him the full attention he deserves. The kind of attention Wes got as a baby and that puts fear into me. Fear that he will also have Autism and I didn't pay enough attention while he was a baby. I also fear about having two kids on the spectrum. One is hard enough.
I've broken down and found myself a therapist. I need someone to talk to. Someone who can help me sort out my feelings and just listen. Maybe it's just sadness, or maybe it's partly postpartum depression. I'm not sure, but I can't take these ups and downs anymore.

Monday, March 19, 2007

Sleep is overrated

Sleep is a word that is slowly leaving our vocabulary. It used to be something I loved, treasured in fact. Now, I have no idea what it's like. I'm slowly getting used to sleep deprivation and managing on very little.

Casey has only slept through the night, minus the car seat, a handful of times. Especially now since he rolls over from back to belly. If he falls asleep this way, he is sure to wake up and cry. Sometimes he's waking up to cry for no reason and multiple times. I'm not sure how much more of this I can take. I am getting so frustrated with him, but I don't want to let him cry because I feel bad that he's going to wake up Wes and then I'll have two crying kids on my hand.

I'm noticing that naps for Wes are becoming a thing of the past. I have dreaded this day like no other. I look forward and relish my quiet two hours in the afternoon. I've finally got Casey to nap at the same time so that I really have peace and quiet. Wes is rebelling and I don't like it. I plan on making this time a quiet time for him in his room. If he chooses to sleep, great. If not, then he must play quietly. The problem with this is that by 5pm, he is a monster and so hard to deal with. The tantrums become worse. When I say worse, I mean throw anything in his hands at me, throw himself on the floor and scream like I'm hurting him. It goes right through my bones and pierces my ears. Then Casey starts because he thinks that if Wes is crying, something must be wrong so he better cry too. I feel myself start to lose my cool and I'm begging for Tim to walk through the door any minute.

I need sleep!

Friday, March 16, 2007

Out of Focus

What a day yesterday was. It was one of Wes' worst days so far that I can remember. I'm surprised that either of us made it out alive. I thought it was going to be a good day because he woke up in a good mood, and even said "on" when he wanted me to turn on his laptop computer. It was the first time he has ever said that word and when I got excited and praised him, he seemed so proud of himself. Jodi showed up at 8 am and Wes instantly knew something was different. She had gotten her hair cut and he was just staring at her, taking her in. It was funny.
Finally, he dug into her "bag of tricks" and he started playing. He was doing well until 10 minutes into the therapy, he started throwing and hitting. I had to put him into time out twice for throwing toys. He was very whiny and just not focusing at all. It was so awful. The worse session he has ever had. Jodi and I did some talking about his behavior and how we should handle it better. Turns out, we were already handling it appropriately. It feels like a failure on my part because if I'm doing it right, then why does he act like this for no reason!
It was also his first day having Speech Therapy finally! After all the insurance issues and whatnot, it was finally here. Turns out that I went to school with his ST and her husband. Small world. She sat on the floor with us and we did a bit of talking while Wes read a book and did his gibberish talk. She tried engaging him in toys but he wasn't interested. She asked me some questions about his regression and his diagnosis. We talked about doing PECS (Picture Exchange Communication System) and how we can use it in our home to get Wes to communicate better with us. Lynn stated that she was impressed with how much he understood and communicated given his diagnosis. He sang some songs with her at the end and even did a shape sorter for a little bit. He got 3 shapes right on his own! I know that once we see her more often, that he will warm up to her nicely and it will be a good match. She is a great person and I trust her with my child.
As long as they can code his ST as Early Intervention, it will be covered with our insurance. If not, then we need to come out of pocket and I have no idea how we are going to do that. I didn't ask how much she charges because I am pretty sure they can code it correctly. We are also looking into Social Security for Wes. It will help with me not working and he has the right to collect since autism is a disability. We just aren't sure of the stipulations and what is required.

Through all this, Casey is due for an ultrasound on his left kidney. He was born with Hydronepherosis which is just a dilation of the kidney. Extra fluid surrounds the kidney but doesn't cause any harm or pain. We found this out on our 20th week ultrasound while I was pregnant with him. It hasn't gotten worse so far, but it's not gotten any better either. He's had two procedures to rule out reflux and blockage which is good. This will just be something he will either grow out of, or live with. When he becomes older and plays sports, he will have to keep himself very hydrated and be careful. People live long lives with this. His right kidney is working perfectly so if something were to happen with his left, his right one will pick up any slack. During one of the tests it showed this his left kidney is working more then his right which is strange, but good. He had his 6 month check up and he is growing so well. He is 19 1/4 lbs and 27 inches. Tall and beefy! Just how I like em.
I have no idea how I keep all these things straight in my head. I have more appointments scheduled then I care to say. Keeping them straight is like playing an orchestra and not missing a beat. Thankfully, Tim has been really good about taking the kids to appointments I have to miss because of something else or being home so I don't have to drag both kids along. I feel like a juggler in the circus just hoping I don't drop a ball.

Wednesday, March 14, 2007

Small Victory; Small set backs

We will finally be able to start Speech Therapy tomorrow! I called the insurance company again to double check they received the referral and was told by a customer service rep (I made sure to take down her name and ID #) that as long as the in network provider receives the referral from Wes' Pediatrician and that it is coded under EI, then we are all set! What a relief. We've had to cancel twice now. One was because of snow, but it's a good thing because we didn't have the referral yet. The second time was because no one was on the same page. I am 99% sure we are there this time.

Last night, there was a wet wipe on the coffee table. Wes got down from eating dinner (well not really eating), picked up the wipe and brought it to the trash in the kitchen. Tim jumped up from his seat to see if he actually saw what he saw. Sure enough, the wipe was sitting at the top of the trash heap. It was totally unprompted but we don't know why he did it. We still praised him up to high heaven though.

It's been another rough day for me today and I'm really not sure why. I picked Wes up from daycare and we needed to run an errand before heading home. I was dreading a meltdown for not going straight home but it didn't come. I made sure to tell him what was going on even if he didn't understand. It's hard to tell what he does and doesn't get. I turned around in my seat and Wes was staring out the window with a complete blank stare. I called his name about 5 times before I gave up and burst into tears. Where is my son? All I want is a small recognition, a smile, a glance, anything! I want my boy and I can't find him.

The other set back is I've noticed he's doing a lot of toe walking lately. It used to be just when he was doing his "happy dance" but he's doing it a lot more. I guess it's a thing kids with autism do. I don't know if I should start him on physical therapy as well for it. I guess I'll have to ask Jodi (his OT)

Tonight, after his bath, he was laying on the floor playing with the towel. He was holding up two ends and slowly making the ends touch, but just barely. He was almost entranced by this. I had to call his name 3 times before he stopped and joined the world again. More and more it seems like I'm losing him. Maybe it's just me and I want results, I don't know. I thought that the therapy was supposed to help keep him in our world longer then his world.

This is the most frustrating thing I have ever had to deal with. He makes great progress, and then something else starts. I just want to take a baseball bat and hit something with all my might so that something else might feel my pain, feel his pain. It isn't fair. I want something to feel the frustrations we both feel.

Maybe tomorrow will be a better day

Monday, March 12, 2007

Ray of Sunshine

There are days when I am so frustrated with Wes and his lack of communication that I want to throw in the towel. I want to get in my car and race to the other side of the world where I'm not known. But how on earth can I leave my boys?

The days that Wesley is so loving and cuddly are the days I look forward to when things are rough. They don't come easily and some days they come few and far between, but then they happen..oh my goodness! My heart melts when he looks up at me and smiles with some recognition.

Tonight, he has learned to open the door to his room. He's in a toddler bed and has the freedom to get up if he needs to, not when he wants to. Well tonight, he got up and opened his door. I hear him at the top of the stairs saying "Hi!". I can't help but laugh because he's learned a new trick and those are just so precious to me. His sweet voice calling down to me to let me know he's Houdini. I climb the stairs and he runs back into his room and hops on his bed. A huge grin spread across his face, he bounces with delight. I'm not sure if it's because he's been caught or because I'm there, but I don't care.

Every happy moment he has is precious to me. It shows me that I'm doing a good job and I know he appreciates it. He may not be able to say it, but I know I am loved. He's free with the kisses which is one way I know for certain. There are times when he gives me the softest of kisses on my cheek. It's feather light and my favorite. I store those times in the back of my mind for the days that my car and a long drive seem so inviting.

Saturday, March 10, 2007

Making Progress


Like I had said before, Early Support Services came out in Sept. to evaluate Wes and we came up with some things we would like them to work on with Wesley. We wanted him to broaden his vocabulary and use the words he used to use all the time. We wanted him to learn to request things such as more drink, more food, bedtime, etc. We wanted to see him learn to use words and connect them with what they represent and we wanted to increase his attention span and play with us or a toy for longer then 60 seconds.

I am so proud to say that he has improved in every one of those items. We can now sit and play for a good 10-20 minutes with something before he gets too frustrated and starts "stimming". He uses the word "more" a lot and appropriately. It seems like each day, he is saying something new. Sometimes it's hard to tell if he actually associates the words with what they represent though. He's also using eye contact in letting us know what he wants.

The other day, Wes was in the tub and bent down to lap at the water. He sat right up, looked right at me and said "mmmm, yummy". I about died! I couldn't believe it. I was so excited, I started clapping and in an excited voice telling him what a good job that is. I always say that when we are trying to get him to try a new food. He kept doing it with a proud look on his face. He even said "good" a few times. I am so stinkin proud of him!

Another day, I had given him a snack of Cheez-its in a small bowl. I put them on the table so he could eat them and went back into the kitchen. He picked up the bowl, brought it back in the kitchen and handed it to me while saying "no" and closing his eyes. I told him he could have something else and brought out a breakfast bar or Goldfish crackers. He looked at the crackers and then looked at me while flapping his hands and looking excited so I knew he wanted the crackers instead. I filled the bowl with the crackers handed it to him and he walked away. I followed him into the living room and he set the bowl down and started eating. Needless to say, I was so surprised. He actually asked for what he wanted, but in his own way.

He has come so far in 6 months. I never thought all this was possible. I knew it was going to be hard and a lot of work for him, but he's doing so well. He's starting to say some 2 word phrases but only when prompted. It's a start.

I'm very excited to see what the next 7 months has to bring. After that, he goes into preschool and into the school system. I can not believe my baby will be 3 years old in a little over 7 months! It seems like yesterday that I brought him home from the hospital and we started our journey as a family.

Thursday, March 8, 2007

Battle on all fronts

We had to cancel Wes's Speech evaluation AGAIN today! I am getting so fed up with all of this. Have I mentioned that I hate insurance companies. Let me start at the beginning of my day...

Casey woke up around midnight last night and couldn't breathe so I brought him into the bathroom and ran the shower. It seemed to help, but we had a hard time getting him back to sleep. Once he finally fell asleep, he woke up a little after 5am and was hungry so Tim gave him a bottle. The rest of the morning seemed to go by okay until I got a call from the ST.

She was calling to postpone our appointment because our insurance company will only pay (100%) of the speech sessions if they are done as an outpatient or in an office. Oh come on!!! Are you kidding me?!? That is the most ridiculous clause I have ever heard in my life! They also need to see a copy of the referral before any therapy can be started and before they will pay for any of it. Now why in H E double hockey sticks couldn't they have told us all this when we called last week! Instead we got the run around, but they were willing to tell the therapist everything. I am fuming mad! So I asked Tim to call the insurance back and do not take no for an answer. I want everything that Wes will be covered for laid out with certainty. He said they won't do it so we got into a fight and he stormed out of the house. Then when I got Casey up this morning, he proceeds to spit up all over my clean clothes! Does God have it out for me today!?!

Tim and my fight has been coming on. There is this pamphlet we received through our local Autism Society. In it there is a section called withdrawal and over involvement. It says that when a child has a disability, one parent tends to stay remote while the other jumps in with both feet. That's a great way to describe what is happening to Tim and I. I totally feel like he is watching from the sidelines while I'm running around like a chicken with it's head cut off. I'm on the phone almost all morning making phone calls, setting up appointments, trying to get the necessary documentation, making sure I'm home for all therapies and they aren't double booked. I just can't take it anymore. When we're home together, it's still me on the floor doing therapeutic activities with Wes. I try to get him involved but he doesn't seem like he wants to be bothered. It is so frustrating. Wes is completely attached to me and I know why. It's because I'm the one who is always interacting with him nearly 24/7. I would like to see him have a better relationship with his father, but the effort needs to be put in on Tim's part. Wesley doesn't have the capacity to do it. I know this post is going to bring up some hurt feelings and not only from Tim. However, this is my place to vent and get out my feelings and I need to do just that because I'm not being heard anywhere else.

Tuesday, March 6, 2007

The Battle Begins

Wes' OT called me back today. I was concerned because we still hadn't heard from the Behaviorist about more therapy. She told me that he would be coming with her on the 22nd and would come twice a month. They are looking to hire someone for the rest of the therapy. She said Wes would be receiving 11 hours a week. She wasn't sure if it was ABA or not. ABA is Applied Behavior Analysis. It's a form of intensive therapy. This is in addition to the OT who will still come once a week and the Speech therapist I found privately.

I could not believe my ears. 11 hours!! WHAT!! That is totally not enough. We were told he would receive the minimum of 20 hours a week. I've read that the most beneficial is 40 hours, but of course, that depends on the child and how much they can tolerate. I know Wes can tolerate more then 11 hours. I plan on calling the director of Early Support Services and telling them I want that increased. We don't even know when it will start because they are looking for someone to fill the space for him, so that alone is going to set us back. It could be another month for all we know. That is unacceptable in my eyes. I understand that they wouldn't keep someone on the payroll if they aren't needed, but come on! I will do what I need to do to get him all and the best help out there. I will not sit back and take the minimum. I never imagined this to be that difficult. I now understand the meaning of "That which does not kill us, only makes us stronger".

Thursday, March 1, 2007

Great Day

Today, Wes had a therapy appointment with his OT, Jodi. She is fantastic with him and he responds really well with her. It's great to see his face light up when she walks through the door with her "Bag of Tricks" as I like to call it.

Wesley did some really nice matching with a peg and shape board. He matched the colors with the peg. You could see he was really looking for the match. Next he played with the ball drop toy. He did alright with matching the color of the balls with the color of the holes. Jodi even got him to use the hammer that it comes with. Usually he would push the balls through the holes with his hands. I was very impressed that he later picked it up to bang the balls more. Later she brought out a rubbermaid bin full of red kidney beans. Wes was hesitant at first but after about 20 minutes, he was digging around for a stacking cup that Jodi buried. She said it was a great sensory tool and it helps Wesley coordinate his brain to get both his eyes and hands working together. Of course, I went right out after and bought our own bin to continue working with this. Wes sat right on the floor and we played until it was time for nap.

We are meeting with a Speech therapist next Thursday so we can work on Wes's language. I am interested in doing PECS with him. PECS is Picture Exchange Communication System. We use pictures of every day items or commands and Wesley uses those to communicate when he can't express what it is he wants. We've tried sign language, but he shows no interest in learning. I've already taken pictures of items around the house that he uses every day. I would like to learn more and how exactly to use them. I'm hoping we can start understanding Wes's wants and needs so there will be less frustration on both our parts.

Jodi gave me some great idea's on how to get around the whole referral and medically necessary crap. She also knows a lot of the people I mentioned who have offered to help myself, Tim and Wesley get the best help we can. I know we are headed for the right track and Wesley is already making great progress.