When Sam was officially diagnosed at age 3, almost 12 years ago the stats were 1 in 1000 or more. More prevalent in boys. Last year statistics changed and the results clocked in at 1 in 166. Now they are saying 1 in 150. But what’s a number, really, when it comes to your child? IT FEELS LIKE YOU ARE THE ONLY ONE. It could be 1 in a bazillion. The world stops. It’s difficult to hear, even though you knew it was coming. The process of getting a diagnosis can be long, emotionally draining, and yet you already knew what the outcome might be or wouldn’t have sought the help. We knew there was a difference in Sam before he was six months but I didn’t push for assistance until 9 months. "Come back after 12 months….he may start talking….you’re comparing him to Peter, who started everything early….every child is different". 12 months. 18 months. 24 months. I’ll spare you the gorey details. I can’t even bare to think of those days without feeling rage, and sadness, and emptiness, and yet determination. I can tell you two things – first, the pain never leaves. If you reflect on the word, AUTISM, you’ll do your head in. You’ll sob daily. It’s important to get over it, or maybe I should say, get past it, because you never really get over it. Second, it gets easier. REALLY it does. I wish, I wish, I wish, that when we were new to this unfamiliar territory, that I had met someone like myself, as I am now. It might have been easier to move forward faster if I could see ahead a few years. If I could have met someone with autism, like Sam right now.
I mean, he is the COOLEST kid. He is absolutely a joy. BLESSING. He fascinates me DAILY. He has mastered language enough to communicate with us. To have his needs met. To be conversational to a degree. To even make jokes. It amazes me how far we’ve come. To think I had to use pictures to talk with him….in conjunction with sign language. I remember a time when most of his words were echolalic (repeating what you say vs. giving you an answer). For more than I year I would say "Good Morning Sam" and he would say "Good Morning Sam". Then I would follow it with "Good Morning Mom" and he would say "Good Morning Mom". You just were used to it but didn’t give up on patterning for him what he should be saying. Then one morning….he must have been six, I said "Good Morning Sam", and HE SAID "Good Morning Mom". I fell to my knees. Fallon, then 3, knew he got it right. Peter, then 8, fell to Sam’s feet and hugged his legs. It was so unexpected. Such a miracle. One of many. MANY. We recently discovered Sam has a splinter skill, which means he has a talent that is highly functional. You’ve heard of savants? Rain Man was one. Well I wouldn’t call Sam savant, but he can do calendar calculations. Give him a year, and a date, and he’ll tell you the day. It could be 1960, or 2010, he’ll know it. Honestly. Fascinating. Trying to figure out right now how to take that skill and turn it to an advantage with learning other things. Miracle.
My point for today…..since I could really write so much more….is that if you, or someone you know, has recently learned they are a parent of a 1 in 150, it’s time to get moving! Early intervention is crucial. It’s available. GET PAST THE DIAGNOSIS. It may even change…you may have gotten mis-labeled. The important thing is to get help. If it’s behavior, or language delay, pervasive developmental disorder (a catch-all term), or really is autism, TAKE the help you are offered. Get enrolled in programs. Don’t settle. Ask for more. Make it happen. You can’t believe what a pain in the a** I was at the beginning….but I got all kinds of things rolling for our local program that didn’t exist. Ok, I’m getting wordy. Let me simplify and say:
Be Constructive ~ Be Creative ~ Be Positive ~ Be Productive
You will hear you have to be your childs advocate. They aren’t kidding. In some communities they are very tuned in with autism and have different programs that are appropriate. In some communities you may have to get more involved and get them to adapt or adjust programs to meet your childs needs. Sadly, in some communities the schools are clueless, and you will have a battle on your hands.
1 in 150. That’s not such good news. But Awareness is good. The fact that the population of children with autism is higher doesn’t necessarily mean there are more and more – it’s partly because we are getting better at recognizing it. And recognizing it means that schools need to address and assess their programs to educate our very special kids.
I’m under no delusion that Sam will be cured. Honestly, I can’t imagine him any other way. He is what he is – and he brings so much joy to our lives. I am grateful daily that he has had the best teachers and continues to grow both academically and socially. I do hope, however, that some day we may be able to prevent more occurances. And if you have questions, or need to vent, or want to share one of your miracles, write me.
"Not being able to speak, is the not the same as not having anything to say".
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