My boy talks now.
After pulling him nearly 2 years ago from a completely inappropriate program in the public schools, setting up a homeschool program for him and most notably chelating him for lead and then mercury, my boy has gone from non-verbal to echolaic to finally expressive talking.
Don’t get me wrong, we are a long way yet from recovery. He still has some stereotypic behavior. He still has a couple very minor stims. (And truthfully I don’t give a flying rat’s ass if he stims for the rest of his life. I stim, you stim, we all stim. Why should I make him stop?) He still has trouble with redirection, and he gets into a loop where he continues to try to do something even after you tell him no. And his vocabulary is very limited.
But my boy is talking now…
When he doesn’t get his was with mean old dad, now he hollers “Mo-o-o-o-om!” When someone stubs their toe he will rush over and ask “are you alright?”. When he wants something that I won’t let him have he says “YES!” Hell, when he has a Lego or Lincoln Log structure collapse because of poor construction he says “goddammit!” (We will work on that when the time is right…)
My boy is talking now!
At least as important as what we did (and possibly more so) is what we DIDN’T do. We didn’t blindly trust our schools to know what they were doing, and pulled him at the first sign they were driving blind. We didn’t listen when first our pediatrician and then later the behavioral specialists told us he would never talk, and instead pushed for chelation to reduce his lead and mercury. We didn’t let negative experiences related to us by defeated parents of older auties dissuade us from searching for answers and trying therapies with him.
And most importantly, we didn’t give up on him.
Never give up on your child! There is always hope if you can look long enough and are willing to work with him/her. We aren’t done yet. We have a long row left to hoe. But we will make it, because we have to.
My boy is talking now.
Re: an incredible testimony to persistance
Ray Croc was right! Perseverence does win in the end. Also, there’s a lot of educated idiots out there… hmmmmmmmmm (this doesn’t mean all of you, if you aren’t one of them, no need to take the poke personally ;)
Anyway, Dad, Congrats and job well done. It’s nice to see more than little steps of improvement. You guys have come a long way, and you gotta feel pretty great. Enjoy the moment.
Best regards,
Andy
Re: an incredible testimony to persistance
WOW!
I’m so happy for you and your family. Your post is wonderful. I would like to share your post at work with other staff. I would at a family resource center, Parents Helping Parents.
Helen
Fantastic!!
Dad,
About a month ago a friend of mine who is a psychologist was teaching a lesson at church and she shared that her son struggles with Autism. That was part of the reason why she became a psychologist but when he was young he was non-verbal and it changed their whole life and how his older brothers and family all worked to get him to talk. He is friends with my son, I used to be his den mom and I didn’t even know how he had struggled as a little guy. Now he talks a blue streak and is incredibly brilliant…and articulate. At times his pragmatics are a little screwy but so what…we still love him..
There is more too come I am sure… keep going just like the Energizer bunny…Thanks for sharing this news with us!!
Thank you
for sharing that wonderful news. It sent shivers up my back when I think of how hard you all have worked… God bless all of you.
Robin
a couple of follow up points...
A small point of clarification…
I thank all of you for your words of encouragement and for your joining me in this celebration. But I cannot take credit for this. In truth, I have done very little with my boy that has led him to improve in his communication and interaction. The credit for this rest squarely upon my wife’s shoulders. It is she who has worked with him day after day, patiently encouraging him to emerge. It is she who has shuttled him back and forth to therapy sessions week after week after week. It is she who has slogged thru dense special ed textbooks that I have found at yard sales and flea markets. She is the one who has exacted this miracle that nearly every single “expert” in sped or autism has told us could not be had.
I thank you for your words directed at me, but I cannot accept them. My role in all of this has been over-seer. I find information on the Net that may or may not have one single useful word, and then hand her the printouts to make sense of it all. I talk to parents and other interested parties, and then report back. My role in this is more analogous to Administrator, which makes me at once stupid, misguided, and functionally useless to the process.
A quick side bar to this (from a different board):
Sandy, you tell me not to blame the teacher in this. I will say to you this, I most certainly do blame this teacher.
When my boy started in the preschool program at a different school than my local one, he couldn’t wait to go. When my older children would go to the bus stop at 8, my boy would be wanting to go with them, tho his bus didn’t pick him up till 8:45. When my wife would take him down finally, he would race for the bus when it pulled up, eager to get to school. This all changed when he entered the K-5 program at my local school.
This is the teacher who took a child who loved school, and in 3 short months turned him into a child you had to force on the bus. By mid-October ’99 he would fight going to school, and his other behaviors at home also were regressing. This is before we ever thought of homeschooling, or trying any other interventions. As this was a gradual process, we did not really notice at first, and it wasn’t until we had pulled him and had the chance to heal this damage that it became obvious what had occurred.
This is the teacher, who at a “meet the teacher” event hosted by our PTO bragged before my wife and I, as well as three other parents that she didn’t bother with IEP’s and saw no use for them. I explained that these were performance contracts, and that they were important to limit the liability the district would face in malpractice proceedings. Still she went on, describing what they had worked on that week, and my wife and I became very uneasy as we each realized that nothing she was recounting had anything to offer my non-verbal son. She spoke of how just that day she had gone over how September was the 9th month, and I thought to myself “my boy has no idea what “9” means, much less that September is the 9th month on our calendar.
This is the teacher who in the only ARD meeting we had contributed nothing during the hour and a half we bickered (and that meeting was for me the revelation that this school system was less than appropriate for my boy). I take that back, she did offer one gem of advice from her experience in special ed. After I had bantered with the principal and counselor for over an hour, the principal cued her, giving her the chance to add her 2 cents. She said that what she saw was that my wife did not discipline my boy properly, and what he needed was for her (my wife) to give him a good spanking when he “misbehaved”. I am blessed with a very quick mind, and I most often do my best thinking when I am on the spot so to speak. I looked at this woman, this special ed teacher whose degree was not behavioral science or abnormal psychology but rather physical education, and calmly asked her if she would have me beat a blind child for not watching where he was walking. She had nothing else to contribute to this meeting.
The decision my wife and I made to pull my boy from this woman’s class took about 2 seconds after I related this to my wife when I got home. We used the excuse of the first round of chelation for lead exposure as the reason for his not going back, and there was no looking back from that time on.
This is the teacher who had some mysterious episode that no one will talk about that caused the special ed room to be moved from the upper floor of the school near the library to a room immediately next to the office. A mysterious episode that no precludes her from ever closing her door, the only teacher, sped or otherwise in my county with this restriction, despite the fact that occasionally one of her kids will sneak out and wander the hallways. This is the woman who now has had child abuse charges filed against her with the State DOE, and potentially criminal charges as well.
Blame this teacher? You bet yer ass I blame this teacher. She’s fortunate that I have restrained my wife on a couple of occasions from cleaning her clock but good (I think my wife could take her without the additional adrenaline that the maternal drive to protect the chicks will bring). I fear that an assault and battery charge against my wife would serve to bring CPS down on us, and so I continue to counsel my wife to stay on the high ground.
Yes, Sandy, I blame this teacher for the actions that occurred to my boy, a beautiful red headed cherub who has an extremely engaging personality, a child who many cannot believe is autistic until the other behaviors, the stims, the repetitive actions, the lack of eye contact are noted. A child who went from delighted student to a temperamental child who will still two years later fight to keep from being led into that school building in just 3 short months. A child who took almost a year to bring back to the point he was before we handed him over to this teacher.
Yes Sandy, I blame her.
Re: a couple of follow up points...
I suppose it goes without saying… you showed “mom” all the complimentary postings (including your own)!!!???
Dad,
I’m so happy for you, your family, and your son. And you are right—it is so important to trust your instincts.
We’ve dealt with some of the same issues with the school (I was told once that the problem wasn’t the programming but the fact that my husband and I had not accepted that we had a disabled child)—and you were one of the ones encouraging me. I thank you for that. As you might recall, we pulled our son out of sp. ed last spring to partially homeschool him. He is reading now—fluently on a mid second grade level (he is in third grade) and he can handle third grade material with some assistance. We’re not there yet but we’ve come a long ways since he began second grade as a nonreader.
There is a new resource teacher–who actually knows effective programs (wonder if I had anything to do with the old one leaving!!). We have really hit it off. She commented to me that she was getting district pressure (not local) to use the programs I fought against last year. I told her the district people weren’t that good (how bold of me) but that she had support at the local level (the principal who hired her had gushed to me about her). Anyway, she then told me that if the program was so good, why can’t any of the children read. My son would have been one of them, had we not intervened.
Anyway, you and your wife have done good work!!!!
Beth