Tuesday, October 30, 2007

Early Detection

World News Tonight on ABC did a piece on early detection of Autism. This is something I am really passionate about. If I have one regret in life, it's that I didn't trust my instincts and get Wesley help 6 months earlier. Instead, I put my faith and my trust into his pediatrician and listened to him instead. There is no excuse for why I didn't just listen to myself. Yes, I was a new mother and I didn't want to think there was anything wrong with my son. There was something wrong and I had worked with children for a long time before I became a mother. What's done is done and I can only move forward and push Wesley along with me.

Here is the link to the website. The video is called Early Detection of Autism.

Monday, October 29, 2007

First Day of school

Today was Wes' first day of school. The day had finally come. It's strange because it was over a year ago we talked about if he still qualified for services, he would go to preschool when he turned 3. It was before we knew his diagnosis and headed down a completely different road. Now it's here. He's going to school. This is hard for me and not for the reason people think. I'm happy he's going to school. It will be good for him and I. What is hard is me not being in control and watching him gain a new skill. I won't have any idea what he's working on and what he's mastered. The teacher and I will be writing in a communication book, but it's not the same. For more then a year, I sat and watched everything he did with the therapists. I watched him succeed time after time. Now I'm on the outside. I feel cut off from him and it really sucks!

On the upside, I am spending lots of time with Casey. Time I missed out on when he was younger. It's actually more fun now. He's such a ham and makes me laugh constantly. Now that he's found his legs, I'm getting more of a workout then before!

This is a learning process for all of us. In time, we'll all get used to our new routines and settle into a pattern again. Change is hard.

Friday, October 26, 2007

Happy Happy Birthday Baby!

My baby is 3 today and starts a whole new chapter in his life. School. Three years ago today, I was exhausted from 14 hours of labor, but looking at my baby's bruised and battered face (forceps delivery) was all worth it. It's been one incredible journey thus far, but the best is yet to come. He's proven to me and to everyone who knows him that he won't be kept down. He has such drive to learn and love. I hope someday someone can learn from him. Learn how to never give up, no matter the situation.

I love you Wesley and I am so proud to be your mother. I learn from you every day and am blessed to have you as my son. I will never stop telling you how much I love you. You are my sunshine and I mean every word when I sing that song to you. Thank you for choosing me as your mother.

Saturday, October 20, 2007

Yackity Yack, Don't talk back!

I'm pretty sure Wes talked back to me this morning. Of course he didn't actually talk, but his crying surely sounded sarcastic.

Mean Mama made Wes go upstairs so I could change his diaper. He was a stinky one. He didn't want to. I had to practically drag that boy up the stairs and into his room. He fought me every step of the way including while I was changing him. The drama continued down the stairs and into the kitchen. I kept telling him he needed to use quiet voice and the crying was "all done". He didn't like that one bit and came back with a forceful angry cry, looking directly at me. Oh boy! My retort was of course "Don't talk back to me".

I asked Tim if it sounded like backtalk and he agreed. I don't think either of us have ever heard that tone out of him before. I actually kind of like it. Strange, I know, but it means he's communicating instead of shutting down because he's upset. That's my boy, Wes. Make your feelings known!

Wednesday, October 17, 2007

Behavior vs. Sensory

I've been having some trouble getting this point across to one of Wes' therapists. She does ABA and with ABA there is only black or white. There is no gray area when it comes to tantrums and whatnot. This can not be when you are dealing with a child with Autism.
I can tell with 99% accuracy when I'm dealing with a sensory problem or a behavioral problem with Wes. Most likely, his outburst are sensory. We've gone off the routine, added something to it, a new place, a new expectation. All these can trigger a fight or flight response to my son. All he needs are a few minutes of some heavy organizing activities and he's back on track. To avoid it all together, you have to remind him in advance of what's going to happen. Sometimes many times to get the point across.

I've had multiple heated discussions with the ABA about this. When he's overwhelmed or frustrated, she forces him to finish a task or to sit down. She blocks his escape and pushes him into his seat. This drives me crazy! I just want to yell "GET YOUR HANDS OFF MY KID!". But I don't. I bite my tongue and tell her he needs some organizing work first before he can perform a new task. She tells me it's behavioral and not to give positive reinforcement for this outbursts. Uhmm, last time I checked, I was his mother and I knew what was best for him and what he needs. I walked over to their corner, grabbed his hand and led him away from her. I got the yoga ball, we did some bouncing and then some deep pressure. Sure enough, after that, he did the new task without any problems and picked up on it quickly. Thank you very much!

I sincerely respect the ABA and what she has done for my son, but I believe that all ABA's should be trained in sensory as well. I know it's more of an OT thing, but it's important when working with a child with autism, because it's not all will full defiance and bad behavior. It's something much bigger. It's Sensory Integration Dysfunction.

Friday, October 12, 2007

Preschool intro and IEP meeting

The second IEP meeting went well. Wes and I went an hour before our meeting so he could go into the preschool and get a feel for what it's like with all the kids there. It went better then I ever could have imagined. When we got there, the kids were in circle time picking their center play. Wes was a distraction because he was running back and forth so we had to remove him. He did not like that one bit! He wanted back in that room. Once circle was over and the kids were at their centers, we went back in. I sat in a corner and observed while Wes' volunteer steered him from activity to activity. He loved playing at the water table and even played side by side with another little boy. I was so happy to see that. They end the day with another circle to sing a song or two and say goodbye. Wes actually joined in on the song. He flapped his hands (although I think this was more stimming then actually participating, but I could be wrong) and clapped his hands along with the other kids. Way to go kiddo!

When the meeting began, I felt distracted because we, again, had to bring Casey. He gets into everything and anything now that he's walking. After going over the psychologists review of the behavioral scale, the team discussed taking some time to get to know him. His quirks, likes and dislikes as well as his strengths and weaknesses. I came fully prepared. I had taken the time to sit down and list most of these. I wanted to make sure the team knew my son like I know him. They agreed and we all came to the decision that they would use his IFSP from Early Supports and Services for the first 8 weeks. After that time, the team would meet again and we would put his IEP into place for the rest of the school year. That makes sense to me. I want them to become familiar with Wes and how to deal with his tendencies. He has a lot of them. My biggest fear is that they will think his outbursts are behavior and not sensory. I can clearly tell the difference, but strangers can not. I also decided that I will drive Wes to and from school every day. If he gets comfortable in school quickly, we'll reconsider letting him take the bus the second half of the year, but I doubt it.

So we will meet again in December again for his yearly IEP. I have to keep telling myself that I can request a meeting again if I feel that his goals are too easy or too hard. Or even if I want something else added. It's going to be a great year!

Tuesday, October 9, 2007

I'm Speechless...

I'm not sure what to say about this news story. It makes me scared for my child.

Get on the bus

Or better yet, stay on the bus!

The schools bus company sent over a bus that Wesley will be riding in to school in a few weeks. I called on Friday to see if we could take a tour of a bus so Wes will become familiar with it when the big day arrives. They sent a bus over to our house after the morning run. I was really excited and thought Wes would do well. I was wrong. Boy was I wrong.

At first, we sat on the stoop to wait for it to arrive. My first big mistake. He rather watch the cars driving by instead of exploring the bus. We walked around the front (or rather me practically dragging him) to look into the bus and greet the driver and her monitor. Wes was reluctant to get on, but did so. He and I sat down on the seat while I talked to the driver. She revealed that she would most likely not be his driver. Well great, so much for recognizing a familiar face. She said she wanted to put him in the harness so he could see what will happen. That did not go over well. He hated it. He tried yanking it over his head even when it was buckled tightly to the seat. He cried and screamed. My mind is going a mile a minute with thoughts that this is a big mistake. I should just drive him and pick him up. The school is just 2-3 blocks from our house. We can walk there. The driver unbuckles him and he immediately heads for the door saying "All done!". Yes, we were all done. I took a few pictures, spoke very briefly with the driver and we said our goodbyes. All the while, Wes was pulling and trying to get away.

Oh boy, what am I going to do? I really thought he would be okay. He loves to go for rides. I figured the only problem he would have, is that the ride is too short. Guess he proved me wrong again. Now the question is, do I just bite the bullet and let him ride hoping he'll get used to it, or do I drive him because it's a comfort for both of us? I know most will talk me out of driving him myself because he does have to get used to riding a bus. I can't drive him forever. My retort will be that someday he'll be old enough to understand the bus more and want to ride with his "friends". This is not that day

Tuesday, October 2, 2007

Tell your story walkin'

Casey has become an official walker. Well, mostly. He starts off walking and if he loses his balance, finishes crawling. I forgot how cute those first time walkers are. All stiff and Frankensteinish. The look on his face is priceless. It's determination with a hint of pride. He hasn't figured out how to get himself up from the middle of the floor, but it won't be long.

I knew this day would come, and fast. Now my worry is, who do I chase after first? Do I get Casey because he's easier or do I chase Wes because he's faster? One day they'll both be going in separate directions and then I'm in trouble. I don't take them to places where they can get hurt alone. If we go to the parks, they are far enough away from the roads and typically fenced in so I'm pretty safe there. But my day will come.

He has really been babbling a lot lately too. They aren't actual words but lots of vowels and consonances. He can carry on a lengthy conversation about nothing. He talks to toys, stuffed animals and his blanket. The only words he has with meaning are "uh oh" (if that's a word) and "get down". I say that one about a million times a day. The boy loves to climb! I can't wait to hear him talk. It's something I didn't get to experience the first time around. I still worry because, well simply, I'm Mom and I can. I am trying real hard not to read all those websites about child development so I don't put unnecessary worry onto him. He is doing lots of things Wes never did (until now) so I'm happy with that. One day at a time. That's my motto.

Fast Forward

It's been nearly 9 years since my last post. Wow, have things changed! I'm not sure why I stopped posting to my blog. It was mos...