Wednesday, July 20, 2011

Writing This Instead of Doing Homework!

I really should be writing two discussion posts right now – but I can’t. I really think that I needed to get this out “there.”

Isaac is high functioning Autistic. I have known that there was something “off” about Isaac ever since he was about 6 months old but did not get the official diagnosis until he was 3. We really won’t know for a few more years if he can be considered Asperger’s or not. There is almost a grieving process that every parent with a child who is Autistic goes through. Just the understanding that your child will never have the same life as a “normal” child. It is rough. Then it comes down to pulling up your boot straps and just dealing it. The diagnosis. The therapies. The meltdowns. The school system. Dealing with Autism. I really do believe that mothers (and fathers) with children who are autistic are some of the strongest, faithful, full of life, individuals that there are. They have to be. Those parents become the best advocators for their child. We advocate for everything, their healthcare, their education, their activities. We also become educators. At times we educate family and friends about autism. We educate their teachers on the best way reach our specific child, because Autism looks different for every child. We even educate their doctors, because we know our children best.

Now Isaac is considered high functioning Autistic. That means that his symptoms are pretty mild and with the right therapy chances are very good that he will lead a “normal” life. There are some things that he will always struggle with but at this point we really don’t know what those even are. We were told by the child psychologist that diagnosed him, that there is even the chance that with the right therapy Isaac could develop enough coping skills to deal with his symptoms. With his last educational screening, he actually tested well enough to not require services within the Utah school district. (Now this is another story in itself because they only spend 2 hours a day, 2 days a week with him for 6 week!) On one hand, I am thrilled because that means that the therapy is working and he does have certain coping skills. On the other hand, well, let’s just see how he does when enters Kindergarten and is in school 5 days a week, 6 hours a day!

This is where I struggle. He is high functioning. According to Utah state educational standards, he does not need services. This means that he will go a whole year without speech therapy, helping with the socially acceptable back and forth of communication. He will go a whole year without occupational therapy, helping him with things like making friends (currently he does really good at parallel play, but does not make friends well) or sharing, or turn taking, or even how to deal with emotions.

There are times that he does things that I feel I need to explain the fact that he is Autistic. For example, we were at VBS last night (at a church that we had been to exactly one time) and I was standing at the back with him. It was towards the end, and there just happened to be a lull in the activity. That was when Isaac informed me (and the rest of the auditorium as well) “Um, I gotta poop!” Well I guess when you gotta go, you gotta go! Other times when he is at the park and sees something different, he just asks. This is fine most of the time, I mean he is only 4, but there are times when it can get pretty embarrassing. Basically, we think it – Isaac just says is. There is no filter. He does not understand most “social rules.” This might be an area that he will always deal with no matter the coping skills that he develops.

I guess it’s the fact that I see the need to explain his “social awkwardness.” I’m not always going to be there to “smooth” things over if need be. I might not always be there to “save” the lizard because he doesn’t understand the need to be gentle, before he literally squeezes the life out of it (totally devastating the little kid that took all afternoon to catch said lizard).

I think all of the time about his life as a high school student. Will he be able to be the football linebacker that I think he so perfectly could be? I mean he has this totally cool scar on his upper lip that portrays a much tougher exterior than he really is. Perfect for a linebacker! Will he be able to wear a school uniform, if necessary, (especially one with buttons?) He will approach a total stranger at the grocery store to get them to change their shirt – just because it has buttons on it.

Now as hard as this can be, a much as I want to pull my hair out at times, I would not trade it for anything! I cannot even picture what Isaac would look like without this diagnosis. I love my son and would walk to the ends of the earth for him. I want to always be there for him. I want to shield him all the looks, comments, pain, and whatever else negative that he might have to deal with. Not just for him, but for all my kids. I don’t want them to have to experience the negative that this world just is. I want them to be happy and joyful and positive. I guess that starts with my attitude and the way they see me deal with and interact with the world.

Guess I have my work cut out for me.

1 comment:

debi9kids said...

this makes me a bit weepy. I know exactly what you're struggling with and I can't imagine losing that extra support that I have come to rely on for Will.