Why am I quoting , The Incredible Hulk? because for me that's what Autism is like. I know I promised that I would not make this a blog about all of the negative bits about Autism but I realized I cannot make that promise.
Today was not a very good day and it hasn't been for quite some time. There are days that N is a sweet loving boy who gives a lot of hugs, kisses and even just smiling a lot. Those characteristics once led his neurologist to suspect he might have Angelman's Syndrome vs Autism. We had genetic testing done to rule that out. The results were No Angelman's just plain ol' classic Autism.
Lately he has become unrecognizable at times, we jokingly refer to him as The Hulk. He starts out slow but then explodes. The cause is usually because he has not gotten his way or he is being "forced" to do things he does not want to. We are such mean parents that we take our children to play outside so they can get sunshine but N would rather stay indoors. This would work out ok if we only had one child but we have 2 and I refuse to make our 2nd son go without. We also "force" him to take rides in the car so we can pick up supplies such as food. He hates the grocery store. I used to understand the weekends because the stores can be crowded but during the week they are usually pretty dead especially in the morning when we go. The thing is he throws tantrums which usually result in self-injury, hitting others and throwing things. As I said above, he explodes.
Sometimes I worry that CPS will get called because there are unexplainable bruises on his arms, legs, sometimes his face is red because he has slapped himself. This is the ugly side of his condition. I don't like it and I am not going to pretend that it's normal.
We don't go out much as a couple because I feel guilty inflicting that burden on others. I know we should but we are a strong team who manages to keep it together because we help each other. I have reached out to his doctor for assistance with this but her response is to give him more medication. One medication Risperidone , which carries a long list of side-effects. No thanks. Insurance companies do not always cover the additional therapies that have been recommended . There are state mandates now but employers can opt out. We do not have extra money laying around to pay for them ourselves, etc. It has become a living nightmare.
Being the person that I am, I don't give up easily. I will fight until the end for my son because he didn't ask for any of this. I keep going back in my mind to think of the things I may have done wrong during my pregnancy but that's not the case. No one can be blamed. It is what it is.
There is a light at the end of the tunnel and most recently we were notified that he has received the opportunity to receive biomedical treatments through a grant from Generation Rescue . We have not started these yet since he just got accepted but this could be the hope we need. A chance to have N back even if he improves just a little. We have to come up with a fraction of cost which is nothing compared to the quotes I was given when I researched these on my own. We have set up page over at Go Fund Me and thanks to some gracious friends & family we have some of the costs covered.
That folks is why my hair is turning gray and why I smile more than I frown. I have learned to be strong. I am not on medication although it has been prescribed and I have been diagnosed with Depression, Anxiety & PTSD (not due to the Autism) Despite all of this there is still hope. Sometimes that's all there is to hold onto.
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