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"I had a good time Dad"

Submitted by an LD OnLine user on

How do you define progress?

In some areas it is very simple; buildings go up, bridges get dedicated, cars roll off of assembly lines, the final check for the mortgage gets mailed…

Our whole lives are filled with small finalities, goals set, work enacted, achievements realized. It happens so often that only the very biggest or most unusual ever cross our conscious thoughts. But not all development or growth occurs in a distinctly quantifiable manner. Some is so gradual, so incremental, so diverse in application that it just seems that one day we look around and say to ourselves ‘well, that has come to be.”…

Civil Rights has been like that. While laws may get passed and enforcement begin, the true growth in Civil Rights has been in the gradual erosion of divisive thinking, in prejudicial action (not that I do not believe there is more room for improvement in than area, but we have come a long way in 50 years.) The maturity of our children is another nebulous measure of achievement. Most of us spend so much time focusing on the mistakes our progeny make we often do not realize how they are growing into adults until so typical milestone like graduation or marriage slaps us.

And so it has been with my youngest boy, my beautiful redhead, my son with autism. This child who was once sequestered in a non-program by the LEA, this wondrous, maddening sprite whom we were told was beyond help and whom we would better serve by shopping early for residential care to get a good home has grown over the years, in some ways very typically, in others by leaps and bounds.

We have been chelating him for lead and mercury for several years now. We do not use the DAN! Protocol, nor the protocols of Dr. Amy or Andy Cutler. We have been using the lead protocol, well established over 60 years of medical practice. As we are the first child my pediatrician has ever chelated (in over 20 years of group practice), we have had to gently nudge him to cooperate with our desires. He has been amazed at how well my boy has tolerated the process (zero negative effects), as well as the improvements we have reported to him (taking him from a non-verbal autistic child with an IQ of 31 to a social HFA child who has some expressive language and an IQ of 77), something that he (or dr.) was told just could not happen.

So we are currently in the midst of round 8, 200 mg of DMSA twice a day with 25 mg of ALA added to help the DMSA pull from across the blood barrier. His lead level at this round onset was just over 12 (10 is currently thought to be the safe level, although a recent study suggests that may actually be too high). He is completely cooperative with taking the medicine, swallowing the pills himself, although you have to prompt him to drink water after each one to push them down.

In the early rounds, a definable improvement came within a day or so of the cessation of the round. We saw the increase in receptive language, appropriate play with toys, the burst in his creativity. In the later rounds the leap came whenever, often in the middle of the treatment. So it was that in round 5 when he demonstrated imaginary play it came almost in the middle of the process. And in round 7, when he began using expressive language on a regular basis it cam near but before the end.

A couple of days ago, I got home from work, changed into shorts and grabbed my boy to take him fishing. I don’t fish with poles and tackle, I use an umbrella net to get feeder fish for my turtles. I like to take my boy because he really enjoys playing in the water, and even though his commotion scares many of the shiners and makes it harder for me to get my bucket of bait, I still manage to do ok. So we tooled up the road in my van, found a place to park and then hauled the gear over the bank and down to the water.

I worked a stretch of crik, wading backwards with the net in front of me, flipping rocks and pulling minnies out of the water to throw them in the bucket, while the radio I brought played and my boy nearly submerged in a hole a few yards away. Took me about 40 minutes (thanks to his running up and down the crikbed and jumping into the hole) to get my 2 dozen shiners, and then I caught up to him and we had some fun together. I didn’t get wet to the hairline like he did (not having a change of clothes to drive home in), but we still had a ball pulling rocks off the bottom of the hole (to make it deeper of course) and building a couple of dams to make the water back up a little bit (encourages larger minnies to stick around and imrpoves my chances of getting good sized feeders for my next trip out).

Finally, it was time to go, or I’d have a bucket of dead fish to throw in the turtle tanks (which they would eat as well, but too quickly). We gathered up the gear, climbed the bank and walked the berm to the van. I opened his door, put the bucket carefully between the front seats, and then pulled off his shirt, shoes and then his shorts. I keep a few towels in the van, and I got him wrapped in one and on his seat before walking around and climbing in myself.

I hit the ignition, and paused before pulling into drive, to make sure the bucket wouldn’t slop, and that his door was secured and belt was buckled. He turned his head when I looked at him, and when our eyes met he smiled. “I had a good time Dad,” that smile said to me. A rush came over me, and I didn’t know whether to shout or cry or laugh out loud, but I merely smiled back, sharing in his satisfied pleasure of a summer afternoon well spent. If ever there was a Kodak moment, this was one.

It is not that he hasn’t smiled before; on the contrary he smiles and laughs daily. It is just that so very often his smiling is less than socially appropriate. He does not have typical empathy (a hallmark of the autism spectrum) and very often his smiling is at some very private thought, or an inappropriate response to stimulus.

But not this time. This time it was a perfect example of non-verbal communication, utilizing facial expression. A very typical reaction to eyes meeting when the people have just done something enjoyable and tiring. Some may say that I am projecting here, that I am reading more into this than really occurred. It is true that sometimes when we want to believe something, we find ways to make it true, even when it may not be so. I will tell you this – looking into his eyes and seeing him smile at me, his eyes holding mine in full contact, there would be no mistaking what he was saying to me, and no way would anyone who saw that could doubt any more than I do what occurred.

I do not know if this will be the gain we see with this round (we still have nearly two weeks to go to complete it). I do not know if this will be a lasting thing or a one-time occurrence. Living with autism teaches you quickly to take each day as it comes. To not do so is to be overwhelmed. Each milestone step my boy has given us hope for the future, renewed our commitment to the present, and shown us that inside of him is a boy with the same basic desires for happiness and love that most of us typicals have ourselves.

I will be watching to see if other examples of empathetic, facial expression occur. Put a bow on that and my Christmas is done.

Submitted by Anonymous on Fri, 08/01/2003 - 7:49 PM

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I always enjoy your contributions. As high functioning as my son has become, I still know what it’s like to enjoy the moments of connection that families with neuro-typical children take for granted. It is a gift to be grateful, to be able to appreciate those things that could be overlooked.

Submitted by Anonymous on Thu, 08/07/2003 - 7:15 PM

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This IS the ‘first’ genuine empathetic smile and meeting of minds — JUST the first. You are wise to remember that there will be ups and downs — but PROGRESS has been made! Thanks once again for making my day — haven’t been around much since the new system requires much more time than I have, but I’m glad I picked your post to read!

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