On November 25, 2007, I sent out an SOS email to just about anybody that was located within 60 miles and was a professional organization with a title that began or ended with the word autism. I got several responses. Now remember I didn’t know squat about anything when it comes to autism, but I was extremely scared and anxious to get help right away. My son had been slipping away and I was just becoming aware of it.
I got several prompt replies, all of them extremely helpful. I sensed others had been down this road prior to my situation and these professionals were used to us desperate parents.
One of the first things that happened was we were put into contact with the local Children’s Developmental Services Agency, a division of Public Health within the North Carolina Department of Health and Human Services. On December 6th Ben was seen by a specialist. Ben was 19 months and 19 days old. He was evaluated and scored at 21 months for Gross Motor Skills, 18 months for Fine Motor, 18 months for Cognitive, 8 months for Language, 21 months for Self Help/Adaptiveand 12 months at Socio-Emotional (ELAP) The diagnosis was “Specified Delays in Development” 315.8
On January 24, 2008 Ben had another evaluation scheduled by the Early Intervention Service Coordinator. This woman has become our life line. We trust her, we welcome any and all suggestions and have found her to be extremely straight forward and to the point. When she suggested Ben meet with a pediatrician and a psychologist we agreed and on January 24th Ben met with them and was put on the edge of the spectrum.
I bet I double guessed these two experienced professionals all the way home that day. How could he be on the spectrum? I mean come on, sure Ben didn’t jump up in the doctors laps and say “Hi!” but he acted kinda normal, and was well-behaved… sort of.
The doctors, of course, saw it differently.
“Ben is moderately willing to participate with the evaluator”
“Ben engaged in very limited periods of reciprocal interaction”
“Few intelligible words were vocalized”
“activity level was above normal”
“stuck thumb in his mouth and had a fixed gaze”
“lack of visual and listening response”
“Ben threw objects during the evaluation”
“frequently would not respond to staff requests for change in behavior or attention”
“behavior was predominately self directed”
“demonstrated little interactive play with this evaluator”
“exhibited some stereotypical autistic spectrum behaviors in this setting”
So I fought it for a day or two, maybe a week or two, until I could swallow the bitter pill. Ben was on the border, his CARS (Childhood Autism Rating Scale) score was a 30. Scores range from 15-60. Ben’s 30 is right on the threshold, squarely on the line between non-autism and the lowest bound of the mild/moderately autistic range.
Now some might say, “hey that’s good news, it could be worse” and of course it could be worse but that’s like saying it’s a great bucket except for the leak. But I understand, what I don’t understand is how any of this will work out in the long run. If Ben was a movie it would be missing a scene. You might be able to follow the story, even enjoy the movie but you’ll never know how that missing scene would have affected the intended experience. Sure, God ‘s plan, fate and all that, the intended experience is the life with the missing scene, get over it, there is no perfection and everyone has a flaw, this is Ben’s. We skip a scene, a chapter, a verse, in his developmental process and we will never know what’s permanent and what’s temporary, a head full of what if’s will plague us/me forever. What if Ben hadn’t suffered this injury, this problem, this set back, what if Ben wasn’t autistic, what if he was “normal?”
Of course no one will ever know, except perhaps Ben, all of us sense some unrecognized potential hidden within us, at least I do, I could have been … if it wasn’t for… if I would have just had the….blah, blah, blah, I dunno maybe it’s just me. But this does bring up a question, if, and I say if with fingers crossed, if Ben recovers and by the time he enters first grade and is at age level in all areas, do we tell him about all this stuff later on? Do we tell him he used to be developmentally delayed and was at one time diagnosed with autism?
Do we plant the seed in his normal brain that he used to be “retarded?”
Dear Ben’s dad: You ask the question whether you should tell your son he once was autistic. Well, perhaps I can help with the answer. Our son is 9 1/2 and he is neurologically typical now. He once upon a time had a very high CARS score and was classified as severely autistic, low functioning by a pediatric neurologist. At 27 months he tested at an 8 month old level (tested with WPPSI, Vineland, PEP-R, etc.). He had no language whatsoever, high hyperactivity, did not eat solid food (at all), highly aggressive, runner, etc. Today — right this minute — he is lying in my bed catching up on the tv shows he missed while spending the weekend at my parents’ cottage (he pvr’d them!). I’m giving him some leeway because on Friday he finished a grueling week of hockey school and then sat crying on the ice because he was devastated by his coach’s harsh written evaluation (these are NHL level professionals). He is bouncing back from the criticism though, especially since the conversation with the hockey school owner (a former NHLer) who informed him the coach would be fired and he wanted our son to come back for another week, free of charge to make up for the raw deal he got. Before our son agreed, he made sure it didn’t interfere with a) his summer soccer league games, b) his summer baseball league games and c) his family’s planned vacation (basically he asked “what are the dates again?” and then consulted the calendar before agreeing to come back). Our son is 3 belts away from his first degree black in tae kwon do. Two weeks ago he went to a friend’s birthday party. Last week he got a postcard from another friend who has moved away and wanted him to know he misses him. This afternoon, before we left the cottage, the neighbour’s kids asked when he was coming back so they could do more cool hot wheel stuff (that would be shooting their cars down ramps, through obstacles and into the lake, then snorkeling around to find them). Our son is looking forward to grade 4 this September. His last report card was all straight As — except for the 3 A pluses — and he is excited about having an opportunity to be part of the ‘older kids’ playground area (the school is K to 8), plus he wants to see all his other friends. If you ask our son if he remembers what it was like to be autistic he says yes — he explains that he had the words inside his head but couldn’t make his mouth work to say them (first phoneme at 2 1/2, first word at nearly 3). He says that he remembers being surprised by much of what we did (such as bath or bedtime or going in the car) — they seemed to be sudden, unexpected occurrences and he didn’t understand what was going on and why. He says that a lot of the time things didn’t make sense (nor did what we were saying). He also said that he didn’t recognize food as being edible and that most of it either looked weird or smelled bad so he didn’t want to put it in his mouth. He’s said that he was scared, confused, frustrated and angry a lot of the time because he did not have any control over his situation — and that things always seemed to be changing. Our son understands that we spent years ‘fixing his brain’ and that now it works just fine, thank you very much. Often he is embarassed by the attention and praise that is lavished on him (most notably by teachers and parents of still autistic children)… our son is literally the poster child for our university’s autism training program. He is not embarassed by his past and when he speaks to parents who ask him questions he says, matter of factly: “I had to work a lot when I was little because I didn’t understand things like other kids because I had this thing that made my brain work different, you know? It is called autism…but it’s alright now because I don’t have it any more. And neither do my sisters. Talk to my mother about it… she knows how to fix brains.” He has asked us other questions too, like why we decided to have his second sister — the one who is five now and given to pitching a hissy fit whenever she is over tired or hungry. When I explain that we were worried that he and his other sister wouldn’t recover and we wanted to make sure there would be someone who would be there to look after them when they were older he pauses and says “that was a stupid idea… just look at her, she can barely look after herself!” While that assessment made me laugh it just made his sister wail louder — and prompted him to say “Oh, and P.S.: I’m not looking after her when you die!” I believe in being honest and forthright — I’ve let our children lead the discussions and as they have asked the questions I’ve given them an honest answer with one major exception: I’ve never told them how badly I wanted to die to escape the hell that was our lives or how much I hated being saddled with the burden of autism because they would just feel badly about that aspect. Instead, I’ve told them funny stories about the things they did (even though they were far from funny at the time). They understand that it was tough work to get them ‘fixed’ — they understand it because they were there and lived it every day! Your son will ask questions one day and I hope you can find the words to explain to him that once upon a time people thought he had a problem with his brain but Mommy and Daddy helped him to fix it and now he is all better. I wish you every success with your son and I hope that one day you too can enjoy the life we now have. Godspeed!
After reading your text entry above, I have to say that I can relate a little bit as to how you might have felt when your son was younger as we are currently going through some of the similar feelings including the confusion as to what we need to do that can help our son. It is really uplifting to hear how your son is able to function now as well as understand and make sense of what he had experienced when he was younger. I would really appreciate it if you could please share any advice that you can with respect to the steps that you may have followed that had helped your son overcome the early age autistic characteristics or as he refers to how you had “fixed the problem with his brain”. Any help and advice would be greatly appreciated.
Steve: This was certainly a blast from the past… my son is now 13 1/2… he is in middle school French Immersion now. He still plays basketball, soccer and hockey. He’s still a straight A student. He still has lots of friends. He has now included student council and higher TKD belts to his resumé too. His autism is gone, long gone and we rarely look back now. He has three sisters now (and often uses that particular ‘burden’ as a way to get special privileges — sometimes it even works!). The only thing we did with all three of our kids was ABA. Comprehensive ABA. No diets, no supplements, no chelation, no oxygen therapy, no horse rides, no dolphins, no anything else. I describe our program as comprehensive ABA because we did discrete trials in the early programming and then moved on to incidental teaching, guided daycare time, social stories, role playing, video modelling, social stories, model classroom, blind shadow in K, etc. Speech therapy, Physio and OT were part of the daily programming. Our son did therapy more than 50 hours per week. I am going to give you my email address so you can send me some details about your son’s current challenges and functioning level. Just so you don’t feel like this is a mountain too high to climb: I designed my kids programs, trained the workers myself and managed to hire some advisors along the way when I didn’t know what to do. I would be more than happy to share my information with you. It’s not hard, just takes time and consistency to really get it done. Email me at CharlotteRobinsonRocca@gmail.com and I will tell you more!
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