Thursday, April 17, 2014

What The Doctor Could have said...

For several months we all thought Andrew was 100% normal. Slowly, just like the change of seasons, he was taken away a little bit at a time.  The day that I knew in my heart that Andrew was on the spectrum was last September when I took the boys into Uncle Brian's house, a place where Andrew loved! That particular day in September, it was different. Andrew was scared. He would not let me put him down. He wanted Mommy to hold him while he fussed and cried. He was deathly afraid of a place that he loved at one time. The look in Andrew's eyes and the sound of his scared cry can not be described in words. Only other moms of children with autism know that cry and look.
That was the day I mourned the death of my normal Andrew. I cried and cried that afternoon. I hated everything and every thing this life was. I soon went back into survival mode and took notes on Andrew's regression.  I have several other situations and stories like that that happened but I never shared on this blog.

Another thing that started happening with Andrew about 6 months or so ago that was a huge indicator that he had autism was his behavior in the night. Some of his night time behavior reminded me too much of Trenton. Something really goes on in his brain at night. For instance,  any child who is neurotypical would be okay with either parent. At night time if Andrew would even see Tim, he started screaming bloody murder, would go straight into a meltdown and scream continuously for extended periods of time. His screams were so high in intensity that he could barely catch his breath.There was no consoling him until he saw me. This is Trenton's exact behavior in the night.

So was it a total surprise on Monday? No not at all. However, until I received the official stamp of autism, I held onto HOPE. A lot of things changed on Monday for the rest of our lives. Just a simple sentence....."He has autism." so much more than three small words. What the doctor could have said was....

  • Instead of one child's future being unknown, now you have two children with an unknown future.
  • Instead of one intensive therapy schedule, now Mommy has two.
  • Instead of having one IEP team to communicate with, now Mommy has two.
  • Instead of one child's research to do, now there is two children's research to do.
  • Instead of looking forward to having some sort of normal family life through Andrew....that dream is gone.
  • The dream of total normalcy through Andrew is completely gone!
  • The dreams you had of Andrew making friends, having them spend the night at your house, playing T-ball is gone.
  • The dreams you had of Andrew playing sports, college, getting married, making me a grandma one day just may not happen now.
  • If you thought you were broke with one child's therapy bills...well guess what now????
  • If you thought your marriage went down the pipes with one special needs I have no idea what to tell you.
  • Everything is going to be hard for Andrew. Nothing will come easy to him.
  • If you worried about dying and leaving behind one special needs child...well that worry just doubled! Now you are going to leave behind both of your special needs children.
  • Now you will worry every day who is going to take care of both of your boys when you are buried 6 feet under because you have no normal children.
  • If you thought Andrew would watch over Trenton in school and make sure the cruel kids didn't bully him or make fun of Andrew is going to go through the same thing. Who is going to watch over them now?
  • It's a good thing you went to college but the only good thing that degree is going to do is help your own kids. You are never going to have time to work again in your life because you have two special needs children now needing their mom's undivided attention, support, love, dedication, and so forth.
  • Instead of dreading just Trenton's birthday now you are going to dread and spend the whole day crying on Andrew's birthday every year.
  • The nights you dreamed that you might be able to catch just one night of sitting on your couch for 30 minutes to watch the news is TOTALLY gone lady!
  • If you haven't "went off" on normal people who talk about nothing but their normal life in front of you....well guess what....that moment is going to be coming up real soon!
I could type many more things but I will leave it at that.

The good thing about Andrew is that the doctor said that Andrew has the potential to make great progress through his therapies. The doctor, who is known to be one of the most conservative doctors to diagnose autism also said..."Now, I'm not telling you he will make such progress that he will graduate college. The ones that graduate college who are on the spectrum are actually your people with Asperger Syndrome. I'm not telling you that he will not be quirky his whole life but he does have potential to make really big progress."

I would say in the majority of other families, Andrew would not have been diagnosed yet. Andrew is a case where the older he gets, his disability will be more evident. Andrew is just lucky to have me as his mom who has done nothing but eat, drink, sleep, and breathe autism since Trenton's diagnosis. More than less you can say, I have become an expert on autism and the  very early signs.

1 comment:

  1. Hi, Angie. I'm Andrea's sister, Ashley, and I've read your blog ever since Andrea first told me about you. I've never commented since I don't really know you, but I want you to know that you and your family are in my prayers just as much as my sister and her family are.