Thursday, July 26, 2007

This is NOT how I pictured my Life.....

As I sat at the table last night eating dinner, I was able to steal a few minutes to reflect on our lives in the last 10 years. I have to say "Our" lives because I am sure this is not what Mike pictured either.

When I dreamed of what my family would be like when I was little, I always dreamed of two happy, playful, energetic boys. They would be tall, dark haired, brown eyes, would do perfect in school, and life would just be wonderful. Apparently, I left too much to be determined by the man upstairs.

When Michael was born, part of my dream had come true. There he was, all pink and full of baby chubbyness, all ten fingers, ten toes, what more could we want? After only one year, Michael had gone from being in the 50% tiles, to being in the 5th for growth. We spent the next 5 years going to a endocrineologist, having bone scans, taking measurements, trying to figure out what was going on. In between visits was a nightmare of trying to get him to eat and put on weight. People would ask "Why is he so small?" and all we could do was just shrug our shoulders. After 5 years, we finally had an answer. Growth Hormone Deficiency. He was put on treatment, and we were relieved that it was something "fixable". Our lives were back on track.

By this time Nick had been born, and he was growing just fine. He was 50-60% since the day he was born, and has not looked back. From day one he was completely different from Michael. Compared to Michael, Nick just seemed like a blob. By one year, I had a little voice in the back of my head that something just did not seem "right". Nick was lagging behind it seemed. He liked to spin wheels, but then again babies will all find stuff like that. He entered daycare at around 14mos and things just got worse. He walked late, was not responding to his name despite his hearing being normal, ate nothing but bread and applesauce, refused to sit with the other kids at meal times, and was often playing by himself in a corner somewhere. At two years old, he was diagnosed with autism. Another detour. This one is a big one. Daily life can be a struggle. Finding services for him has been an even bigger struggle. His behaviors can be devastating. He has put two holes in our walls from head banging, and many more dents.

He needs intensive speech, occupational, physical, and behavior therapies just to get him to a functional level. We don't care about college, we just want FUNCTIONAL. His senses overload him, he cannot break through his wall to talk, he struggles with texture issues, all the things that we take for granted are such hard work for him. Yet, the sweet moments are extra rewarding. When he says "Cow" while looking at a bird, or gets gutsy enough to climb UP a slide, do I say anything? Hell NO! It takes so much for him to do these things, and he is so proud of himself when he does them. All of this, and yet I would not trade it for anything. Maybe the man upstairs knew what he was doing afterall.

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Sunday, July 22, 2007

Mommy and Me time!

Monday was a nice day outside, so I took the boys to the zoo for some fun. Michael had a great time, and as far as I could tell, Nick seemed to like it as well. He was not too interested in the animals, but he seemed to really like the fish in the aquarium. Some areas just were not his faves though. The whale show was difficult for him. With all the people crowded around us he started to lose it. Michael got to see the show, but Nick was happier strapped in his stroller in back of the crowds. We had a couple of meltdowns-but they were easily controlled, so it turned out pretty nice.

I applied for SSI for Nick. We find out Aug 3 if we will get it. This would mean extra money for his therapies, or other supplies he needs. I also got the referral from our insurance to cover $2500 month for ABA therapy, as well as going to the University of Wa. He is still on the list for Speech and Oral motor therapies.

Friday we had our first appt. at U.W. It was basically a "get-to-know-you" session. She asked me a lot of questions regarding Nick, and then proceeded to work with him a little bit. He did pretty good with matching objects, and puzzles. As well as asking for more crackers. She told me to write down every time he bangs his head or hits himself so that we can figure out what is causing him to do that, and we can teach him a more appropriate behavior. Since Friday, we have already used up one sheet of paper that she gave us. We still have 5 more days to go!

Today, I worked with Nick a bit on labeling animals. We used flash cards that had what the animal felt like on them. I held up the card and asked "what is this?" and then moved his hand over the patch of fur, or material, and said the name of the animal on the card. He then repeated the name after I said it, and he was rewarded with playing with a toy for a minute. We repeated this drill twice-and went through all the flash cards. I am now searching to find him a therapist this next week of my vacation. I would do it in a heart-beat if I did not have to work. I know Mike would do it if he had to, but he is not the kind of person to just sit at a table or in a room for the day. He would much rather have Nick out and about in the real-world...which is good too. He would do it if we can't find someone, but I think it would just be easier to have someone else here.