Tuesday, May 29, 2007

Results are in

We took Wesley to see a geneticist about 3 weeks ago. We got the test results back and everything is normal. We were concerned about his bruising and clotting so we had those tested too while we were there. That came back normal too. He is just really hard on his body so he bruises a lot.

My biggest fear was Fragile X Syndrome . Wesley didn't have any of the physical markers, but it was still a possibility. That came back negative as well. Phew!

We still have not done the 24 hour urine collection. I'm not sure I still want to do it. I teeter back and forth with it. Why put him (and us) through that when he's making huge strides in his therapies. Maybe I'm just afraid of the possible results we'll get back. The container is still sitting on my counter and the lab paper is still on my fridge. Guess I'll have to make a decision soon.

Monday, May 28, 2007

Could it be true?

May be TMI, but hey, I'm still proud.

The other day while I was feeding the boys their lunch, Wesley exclaimed he was all done and got down. I was finishing up with Casey and they were both going to take a nap. Wesley came up beside me and said "I poopin". I looked at him puzzled by what he said. He even had the look he often gets when he has to go or is in the middle of going. Typically he runs and hides in another room in a corner or behind something. I thought I smelled something so I waited a few minutes and checked his diaper. Nope, nothing. Most likely gas. I chalked it up to echoing because I often will ask him when he gets that look.

Casey finishes eating and I check Wesley one more time. Still nothing. Oh well. At least he used a two word sentence. So off to bed they both go.

Wesley wakes up from his nap and the minute I walk into his room, I smell the funk. My goodness, HE WENT! No way! I was still skeptical because he is never really consistant as he used to be.

Wouldn't you know it, the other day, right after lunch, he stood in the living room and said "I poopin". I didn't believe him and told him it was time for nap. He gave me a bit of a fight and I figured he just didn't want to go. Being the consistent (and mean) mother that I am, I made him go anyway. Sure enough, after his nap, came the funky smell. He did it again!! Holy moly!

It's been a couple days (and a couple of funky diapers), but he hasn't said it again. Could this be the start of potty training? Is he really ready for it? Am I really ready for it? We have the potty so technically we're ready, but mentally, not so sure. For right now, we're playing it cool, letting him tell us that he's going or has to go before we go the sit down route. I honestly thought we'd be potty training the boys together.

Thursday, May 24, 2007

Building his skills

Wesley surprised us immensely yesterday. I have been working with Wes and his large Lego blocks for only a couple of days. I used them for imitation. I set out 4 small blocks and told him to "Do This". I placed my block on top of another, and he did the same with his. He picked up on it quickly and I was so proud.

Yesterday, during his ABA therapy, he dumped out the bucket of blocks and started to build. No prompting, no imitating, no requesting. He picked up the blocks and just started to build. He has never used the blocks in that manner. Actually, I've had them put away for a month because he was stimming off of them and using them inappropriately. Normally, he would either choose two blocks to hold in his hands while he ran around the house, throw them around the living room, or kick them. Not anymore.

He has built with them two times now and I couldn't be happier!

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Wednesday, May 16, 2007

The Cookie Monster

Oh Lord, what have we created? Wesley has gotten the hang of his PECS in no time flat. Maybe too well. He's all about Thomas the Train on PBS Sprout and cookies. It used to be Jacks Big Music Show on Noggin.com . The cookies are just Nilla Wafers because we knew once he understood what it was, he'd ask for it all the time, which he does. It's adorable though. He goes into his book, rips the picture from the Velcro, walks casually over to me and says "cookie?" How can I resist? He gets a cookie. I mistakenly put the picture back into his book, unknowingly giving him the opportunity to ask for another. This goes on about 3 times before I get the "duh!" moment and remove the picture from his book. Problem solved? Nope. He knows the word too and he's too smart to need the picture all the time. So he gets a fourth.

Wesley is rewarded with a small sample of a Thomas movie when he works hard with Danielle (his ABA therapist). Well, it's not entirely true. We have a rewards board that is supposed to go in his PECS book. He was requesting Thomas nearly 24/7, so we removed the rewards page. When his time at the table is over, he gets to choose a reward activity. 99.9%, it's watching Thomas for 2-3 minutes. Danielle and I are discussing whether we should try to branch him out and remove the Thomas picture for awhile. It's hard because he knows and we know it's there, which in turn makes him work hard to earn it.

Yesterday, I was lounging on the couch with Casey on my lap. We were playing peek-a-boo and other games. Wesley wanted to play with his pop-up ball toy. He picked it up and brought it over to me. I told him that when I was done playing with Casey, we could play with the toy. He dropped the toy, ran to the kitchen table, and pulled the picture of the toy out of his book. Little stinker! I ended Casey and my game a little early so we could all play together. Again, how can I deny that? It made the thought to go get the picture (like he's supposed to) to let me know what he wanted.

Wesley, you are an amazing little man. You surprise me more and more every day. Thank you for being my son and choosing me to be your mom.

Wednesday, May 9, 2007

Boo Boo Fixer

In the last week or so, Wesley has been seeking me out whenever he gets hurt. It could be a stubbed toe, or he fell off of something. Big or small, he seeks me out for comfort. It melts my heart and the love and need to protect him becomes so strong. He has never done this before. He would cry and go on doing what he was doing, or he'd leave the room and hide somewhere.

Yesterday, he was goofing off on the couch and fell off. He immediately stood up and came running to me. I scooped him up, kissed his head and hugged him tight. Today, he stubbed his little toes on the kitchen chair and walked over to me. He wasn't crying, but I knew he needed comfort. Sometimes, that's all he needs. Other times, I rock him in my arms and sing him a song. It's almost like the autism disappears when he's hurt. Not that I mind that!

It's nice to be able to be there for him when he needs me instead of retreating into his own world and away from the rest of us. The real Wesley is immerging and we get to interact with him more and more.

I owe a huge thank you to his behaviorist Danielle. She has done wonders with him in the short time she's been here. His speech is improving, his attention is improving, the tantrums are diminishing, and he actually understands commands.

I'm just so thankful to be the Boo Boo Fixer

Tuesday, May 8, 2007

Seeking something new

The summer hasn't even started yet and already I'm tired of schlepping the kids to the park. It seems like we've been to every park in the city a handful of times and it's so boring. It's probably not boring to Wesley because all he does is run around the play area and throw the bark mulch they've put down. I know it has to be boring for Casey because I'm either carrying him around or he's planted in the carriage. When I'm alone, that's all I can do with him. I need to keep my eye and be one step behind Wesley at all times. It's tiring.

There really isn't much else I can do with them except go for walks, but even that's going to get old fast. For anything else, it takes two sets of hands which I don't have. I've employed Tim's cousin this summer for a mothers helper. She's 15 and super excited to help out. She still has a month of school left. Then I'll be able to do so much more with them. We can go to the beach, to childrens museums, and to the pool.

There is no way I can take both boys to the pool by myself. Wesley has no fear about running into the water or taking off out of the pool area. I can't just leave Casey behind while I go chasing Wesley. Working around naps might be an issue, but we'll manage. I'm hoping that Casey will go on a two nap schedule soon.

Right now, road trips are all we can do to break up the day when Wes has no therapies. I hope there's plenty of road left that's close to home.

Sunday, May 6, 2007

Tonight, I'm angry

It's been weeks since I felt this way. I'm suprised I went that long without crying, feeling angry and sorry for my son and myself. I've reached the breaking point and I need to let it out.

I'm so tired of fighting. I'm tired of having to work so hard to get my son back. It shouldn't be this way. I never wanted it to be this way, but it is, and there's nothing that's going to change that. No prayer, no wish, no bargining. I'm tired, I'm spent, I feel like I have nothing left. Tomorrow, I have to find the strength and find the will to keep going. I have to for my son because no one else will.

I'm just so angry. At who, I don't know. Maybe God, maybe myself, I don't know. I'm just angry that this is happening in my life. I'm angry because the future is so unclear. The only certain thing is that autism will be a part of my son's and my life for the rest of our lives. Why? Why him? Why us? Why, why, why!! I just want to scream. Scream at someone, anyone!

God, please take this pain from me!

Wednesday, May 2, 2007

Those three beautiful words

He finally said those words to me. He told me he loved me. Well it was more like "I yuv you." but I'll take it. I have longed to hear those words from him. He looked me dead in the eye when he said it too. Albeit, he was repeating me, but he still said it and deep down in my heart, I know he meant it. I can't explain the feeling I had in my heart. It nearly burst in my chest with love for him. I could see in his eyes that he is glad I'm fighting for him and helping him emerge in our world. It was so much more then just "I love you". It was a thank you. For the first time, I actually felt that all I've been doing, all the fighting and the standing up meant something. It meant something to him. More and more he's coming into this strange and overwhelming world and he's okay with it. He's okay because Mom and Dad are holding his hand and will protect him at a moments notice.

Wesley had his evaluation today for Sensory Intergration Therapy. He's been put on a waiting list, but they don't think it will be too long because his schedule allows for mornings and most of the kids on the list go to school during the day. He loved the ball pit. We couldn't keep him out of it. He got right in the bean bin and I found lots of beans in his diaper when we got home.

It's funny because a year ago, we couldn't keep him off the swings at the park. When it was time to go, it would be battle royale to take him off and get him to the car. This year is different. He won't go near the swings. The OT who did Wes' evaluation for the SIT tried putting him on two different kinds of swings and he freaked out. He preferred the ball pit to anything else. Now, when we go to the park, he's all about the slides. What a difference a few months make.

Tuesday, May 1, 2007

Fun in the Sun!

Today, the boys and I met one of my great friends and her two boys at a local park. It was a bit on the breezy side, but the boys (except Casey) were having a ball climbing up and down on the equipment. Wes was his normal (ha! Gotta laugh at that word) quirky self. He simply ran around the equipment and when he got tired of that, he piled heaps of pine bark on his lap. Unfortunately, he did get in trouble for throwing it a few times. An hour later, Kelli and I decided to pack up the kiddos and take them to lunch. We gave them a special treat at McDonalds. I was a bit nervous, I'll admit. I wasn't sure if Wesley would behave and sit while eating. He did so well. I actually forgot about the Autism for a moment and looked at him like a typical two year old. It was strange. It's been so long, even before the diagnosis, that I looked at him as typical. He was tired after we finished eating and became whiny, but that was it! No tantrums and no running off. It's no surprise that he ate his lunch since Auntie Kelli bought him chicken nuggets.

All in all, it was a great day and I can't wait to get together with Kelli, Chase and Carter (or Car Car for short). It will be a good learning experience for Wesley and with Chase and Carters' help, Wes will learn how to play with others and form lasting friendships with them.

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...