Thursday, January 31, 2008

A great article

After blog hopping (as I like to call it) , I found a link on someone's blog. It is from the Autism Network International newsletter. You can read it here . Even with the best of intentions, sometimes "I'm sorry" isn't the appropriate thing to say.

Making Waves

It's only been 3 months since school started for Wes, and already I'm making waves. Ah, me.
The parking lot for the elementary school is quite a hike to the door for the preschool. There is a small parking lot near the door, so I've been parking there to drop off and pick up Wes. The buses for kindergarten and the preschool use the small driveway to drop off and pick up kids who have special needs or go to daycare after school. They are usually small buses or vans. It's been bitter cold here and it takes a year and a half to get Wes down to the car in the parking lot to go home or go to school. Not to mention in the morning there are lots of buses and parents dropping off so it's hard to maneuver. Wes still lacks the knowledge not to run in front of cars or buses so it's a big problem for me when I'm trying to get Casey out of the car and into a carriage. When we had Wes' first IEP, the teachers and the preschool coordinator told me that it would be alright for me to park back there because of Wes' situation and Casey's age.

Today, the principal of the school came out and scolded me in front of other parents who were picking up their kids. I was very embarrassed by her tact and tone. She told me I needed to move my car immediately and walk from the parking lot. Now mind you, I didn't exactly dress Casey appropriately. He didn't have mittens on and he took his hat off. The preschoolers were coming around the corner from being outside while I was trying to find a parking spot in the parking lot. His teachers came over to discuss the matter with me after the other parents left. I told them how appaling the principle just was. They told me another parent with a typical child and a 6 week old are allowed to park next to the door because she has an infant. How can they make an exception for one and not for another parent. Yes, Casey is a year old, but it's more like I have two 1 year olds and not a 3yr old and a 1yr old.

I immediately came home and sat down to send her an email with my disgust. I copied the school board, the superintendent, the assistant superintendent and the presidents of the PTO. No way am I going to jeopardize the safety of Wes and Casey because he doesn't take the bus. I'm working very hard at getting him accustomed to the bus so I don't have to pack up Casey to pick up Wes. I let her know how inappropriate and unprofessional she was to scold me in front of other parents that way and that if she wants to make an exception for one parent, she needs to do the same for others.

Ugh! A precursor to the politics of the school district.

Wednesday, January 23, 2008

Flashbacks and Mini Successes

I had a major flashback today when I emptied Wes' backpack after school. Inside was a Scholastic Book order form I remember when I was in school getting so excited to bring them home. I would read every description of every book and circle the ones I really wanted to buy. I couldn't wait to show my mom which books I wanted. Of course, I couldn't get them all. Sometimes, I couldn't get any, but I was still excited to get the form. Inside Wes' bag was another note stating that coming up, the kids would get a chance to go to the library and purchase books through a book fair. Another exciting time for me! I usually was allowed to buy one or two books through the book fair in the library. Seeing all the new, crisp, and shiny books just made my week.

I really hope that Wes shares my enjoyment for books when he's able to understand. To see him paw through the pages of the book form would be so nostalgic for me. I think I get my love for books from my mom. She was never without a book. Unfortunately, due to my busy life, I don't have much time for books anymore. Occasionally, I'll get the opportunity to really sit down and read.

Today, I was able to actually get Wes on the bus as opposed to just standing at the bottom of the stairs. It took a little bit of coaxing, but he stood next to the bus driver and looked around. It was only for 60 seconds, but it's a huge step for him. We said goodbye to our friend who was already strapped in, bye to the bus driver and her monitor and got off. No tears! If you recall, our first experience was horrible. The bus driver is being so nice with letting us take baby steps when I pick him up from school. Eventually, he'll be on that bus. It might not be until next year, but it will happen!

Tuesday, January 22, 2008

Daddy Jr.

This boy is catching on, and fast. He's become my little snitch in regards to Casey. It didn't take him long to realize that when Casey is doing something he shouldn't, all he has to say is "Casey Joseph!". It cracks me up every time.

When either of the boys are doing something they shouldn't, I say both their first and middle names to get their attention. Wes figures that since Mom does it, so can he! Casey loves the buttons on the t.v. Occasionally, he'll change a channel or turn the t.v. on when he's not supposed to. If I'm in another room doing something, I know that when I hear "Casey Joseph!", he's done something he's not supposed to. That's my cue to check on what's going on. He's even started telling Casey to back up if he's too close to the television. His tone is authoritative and it's hilarious to hear!

I should probably call him Mommy Jr. since he got it from me, but since he's a boy, we'll use Daddy Jr.

Tuesday, January 15, 2008

Never enough

Do you ever feel like something is never enough? One day you think you're on the right path and everything is going great, and the next you find yourself searching the Internet and the yellow pages for more.

Today, I feel like I could be doing so much more for Wes. I feel like the time he's not in school is wasted because we aren't doing something therapy related. I work with him at home and incorporate learning into everything we do, but is that enough? I've taken him to every specialist recommended, but is that enough? He's making wonderful progress, but could he be making more?

There aren't that many resources here and some of the routes others have taken don't work for our family. But then the guilt kicks in. Should we bite the bullet, rearrange our finances and do the Gluten Free Casein free diets? I'm extremely worried about giving him all these vitamins and minerals that are supposed to help, but what if they do? What if we're missing out on something? What if a DAN (Defeat Autism Now) doctor really could help Wesley?

I could go on and on forever about this. It comes down to, Is what I'm doing now enough for him? Am I making the right choices or am I ignoring things right in front of my face? God, this parenting crap is hard!

Thursday, January 10, 2008

Gene linked to autism

Boston scientists have discovered a genetic variation for the risks of autism. Here is the story .

I believe Wes' autism came from trauma. He had a very traumatic birth and wasn't breathing when he made his entrance. He was a 'difficult' baby from that moment on. Still wouldn't change him for the world.

Let's get physical

It was mentioned in the last IEP meeting that Wes should be evaluated by the schools physical therapist. I've been concerned that he should be in PT since we started Early Intervention and had planned on mentioning it at his yearly IEP meeting. He only received OT and SLP while in early intervention. They told me that he had more of a need for OT then PT. I was new to this path so I didn't argue. Now that he is in school, I want him evaluated for everything and anything. Every extra piece helps. When we sent back the signed IEP, I made a note that I wanted him evaluated before March 2008 which will be our next review of his IEP. Today, I signed an authorization form for my permission to have him checked out. I'm glad he is. I know that he has very poor coordination, still doesn't jump, and runs with an immature gait. I assumed those were OT area's and not PT. I was wrong. I'm pretty sure he will qualify and will start that up soon.

In the meantime, I am thinking of finding extra assistance outside of school. I am checking out our area to see if there are any autism groups for children that incorporate socializing, OT, and maybe some ST. So far, no luck. I don't want to overload him. He's doing a fantastic job and all his teachers keep telling me how quickly he's picking up routines and following directions. The autism coordinator for the school district (the one that did monthly visits to our house while Wes was in EI) told me that every time he comes to check on Wes (monthly), he has to overhaul his program because he's either already gone ahead or will be mastering certain areas in the very near future.

I'm not a believer in curing my child. What I do believe in is getting him as close to a functional child/adult that he can survive in this world with minimal help. That's all I want for him. The more he gains and at the pace he's moving, I worry less and less about him. We've made some changes in our house to help Wes do more things for himself that he should be doing. Tim and I continually back off and let him take care of himself and be where he should be for his age. All those things, along with school are helping him be at his fullest potential, for the time being. There is so much more potential in that body that needs to be let out.

Wednesday, January 9, 2008

The sweetest thing since chocolate chips

It was a rough morning today. Both kids are cranky pants, it's raining and I'm tired. Not a good combination in our house. I couldn't wait for 10:40am because that meant school was out and lunch/naps are right around the corner. It has been unseasonably warm here so while it wasn't raining, I parked the car and walked up to the school to get Wes. His aide brought him outside and had a small envelope in her hands. On it was written Wesley in a child's handwriting (backwards letters with some small and some large). C (his aide) told me a classmate was at the sticker center today with some new Thomas and Friends stickers. He told one of the teachers that he wanted to give it to Wesley because he knew Wes loved Thomas. Here is the picture...



So I took off with the kids down the walkway to catch up with the mom and thank her son for the wonderful gesture he made. Wes was crying and Casey slipped out of the stroller (don't ask) as I dragged the kids along. We finally caught up with her and I showed her the picture her son, Z, had made. I told her that Wes has autism and making friends doesn't come to him at all. She was surprised and told me her son has speech issues as well as a hard time making friends due to social delays. She thanked me for telling her. I of course started to tear up and told her we would be going home to make a thank you card for this little boy.

Without saying, that made my entire day. I couldn't express enough how much I appreciated her son acknowledging my child. I don't get to see how Wes interacts with kids in school or how they interact with him. My fear has been that he is in his own world or working with his aide and never socializing with the other kids. I know that's not true, somewhere inside my brain. Today was proof that he is making connections in some small way to other kids. A new step as been reached.

Tuesday, January 8, 2008

First time mom....again

I've heard many times in the past that no two children are alike. I never imagined how true that was and how wrong that was until recently. My boys are so different, yet so alike and I feel like I'm a first time mom all over again.

Both Wes and Casey have such a stubborn streak in them and they both have relatively short fuses. Yes, I know, they get that from me. On the other hand, they have such different personalities. Before Wes was diagnosed and we learned how to deal with his behavior issues, he had tantrums. They would be in loud, crowded places or when we went off the routine. Casey, well he's a whole new ball of wax. His tantrums are totally temper related. If he doesn't get what he wants, if he doesn't get it when he wants, or if he doesn't get it how he wants well watch out because the world has ended. The child is 16 months old going on 16 years old. He knows how to work the system to his advantage. The system being myself and Tim. He knows that if he wants to do something he's not supposed to, he needs to be sneaky and hide. Usually it's not the best hiding place, but typically it's in a corner or behind something else. As soon as he's found out, he puts on his cutest smile and gives the sweetest giggle. That is until you take away whatever he's not supposed to have. BOOM! The you know what has hit the fan. He throws himself on the floor, legs kicking, arms flailing, and voice screaming. If you need to tell him no, then he runs over with his index finger outstretched and gives it right back to you.

I'm not used to this. Yes, I've had issues similar to deal with, but not like this. I have had no previous training for a child such as himself. There are no books to help me along, no videos to watch. Only the sheer enjoyment of watching is cherub face smile at me when I can see that the devil on his shoulder has won, this time. I've been blessed to be given the opportunity to raise such wonderfully vast different children.

Thursday, January 3, 2008

Making Friends

School on Wednesday was delayed which meant no school at all for Wes. It was supposed to be the first day back after Christmas break. We could not spend another day stuck in this house so it was time for a field trip. I took the boys to Discovery Stop which is an indoor playroom. Wes loves going there and isn't at all overloaded as long as it's not too crowded. Usually winter is the worst time to go, but since it was back to school, I figured it wouldn't be that bad. I was right. Neither Wes nor Casey could wait to get in there and start running. For the first time, I felt comfortable bringing them together with no other help. I trusted Wes to stay in the play area and to be safe. I spent my time chasing Casey and making sure he was nice to the other kids. That's a tough job. Casey ran over to the large climbing structure and I heard lots of giggling coming from Wesley. He was with two other boys who were being silly on a slide and Wes was watching and laughing at them. It was so amazing to see. I could tell these boys were feeding off of his reaction. They became sillier and sillier. Finally, Wes had a bit too much of them and ran off.

I've even been noticing him trying to get Casey's attention and making him laugh. A couple of weeks ago, the three of us were upstairs playing and I was putting clothes away. Wes was running past his bedroom and surprising Casey, who in turn was in the clutches of a belly laugh. He was looking directly at him and laughing along. This went on for a good 6-7 minutes before they each were distracted by something else. I watched out of the corner of my eye and smiled enjoying the brotherhood that was playing out before me.

Wes stopped engaging with other kids after 18 months old. That's about when he really retreated into his own world. It's the first step to accepting other people and realizing that they give him something in return for his attention. Just another sign that school is really making an impact on him. The funny part is that boy is so stubborn. We all know he can do something, but he refuses to do it correctly or completely. He will fight for 10 minutes before he concedes and does what he needs to do. Wonder where he gets that from.