Tuesday, February 28, 2012

Autism and my Family

 The best thing any person can do nowadays is educate themselves on what autism is and is not. Once people educate themselves and recognize Autism, then life can be made a lot simpler for those who have been affected.
The number of children being diagnosed today is just astounding. 1 out of 110 children... just in boys, it is 1 in 70! * edit to add... Now it is 1 in 54! Kevin and I went through a grieving period (like most parents of newly diagnosed children do) and we felt like we had lost a child. At first, we lied to ourselves and said that he was just going through some small changes....  Day after day, we watched our loving affectionate son drift away from us and go to an unknown place.
He stopped looking us in the eyes, diverting his gaze. He stopped responding to his name when he used to. No more smiles. He flaps his arms, walks on his toes, and makes unusual grunts now. It is all cute when they are toddlers... not so cute as they get older.
Then he lost the 10 words he did know. They vanished over a year ago and have not returned. He could no longer tell me if he was in pain, or happy, or if he wanted a glass of water. Then the outbursts began. He knows he needs to communicate but it is like something RIGHT on the tip of his tongue that he just cannot do. He KNOWS there was a time when he could talk too. He gets so mad at himself, he hits his thighs or bites his own hand. It is a twisted game of Charades every moment of every day.
 He used to be my shopping buddy. Now, the sights, sounds, smells... they overwhelm him so badly that he screams in terror. He didn't always get overstimulated like this.The looks and scorns I get in public with him when he does this (which is ALMOST every time we are in public) break my heart. I have been chastised by strangers who know no better. I see the stares, and I hear comments spoken under peoples breaths... I have a knack for lip reading too. And no, spankings don't work when the kid LITERALLY feels like he is dying. He doesn't "get" why he is being spanked. A simple errand like going to the grocery store will cause both me and my son to cry uncontrollably... I usually wait until I am at least in my car to have my sob session.
 We, as a family, felt robbed in a sense. No seeing Santa, no family vacations, no spontaneous trips out to eat... It would all be to much for him right now. Maybe someday, with therapies, meticulous planning, and a lot of prayers. For now, for the sake of our son, we will forgo a lot of things, but I wouldn't change a THING.
Before anyone begins to think this is a pity party, let me enlighten you. What we didn't realize back then in our state of depression is that he is the same soul we brought into this world. We have faith that God handpicked this child for us, and that he will live a full and happy life. Maybe my kid won't be the kid who graduates from college, gets his doctorate, and marries a wonderful woman and creates half a dozen grandkids for us to spoil rotten. MAYBE, he will...... Any preconceived notions or dreams I had for my child are gone... and My husband and I don't miss them! He was given to us by God because, although it feels like a prison sentence for all of us some days, it is also an opportunity to MAKE us stop and smell the roses... to be proud for the small things, and to relish every single smile, hug, or utterance that flows from his mouth. It has made our whole family stronger, and better because of it. My son is the reason why I am the person I am today... a better, more informed and educated mother and wife.
We are also not where we were financially a few years ago (like many people today). Therapy, tools, and interventions can get expensive and we do what we can to get the best impact we can get. His eye contact has improved. He says HI and UP with regular consistency. We have adapted to him and his quirks...most outings we do now are "sensory friendly". The life lesson from this is that what goals we set for ourselves may not be the goals God sets for us. God will give us what we need. We will be provided for... not wealthy in possessions or belongings. We will be filled with the kindness, love, miracles of life, and the opportunity to see God's greatest gift... a son... different, quirky,  and PERFECT for us.

It is moments like this one that warm my heart... a rare photo of him looking at the camera and smiling. He did his when he was younger, but stopped during his regression into Autism. This lets me know that my son's happy spirit is still there.