a very brief update

[Dad]

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.

[pimmy]

Dad,
Amen, to not ever giving up. Congrats, to you and yours. You brought a tear to my eye. Thank-you...Jodi

[playtherapist]

Dad,

I am a special needs consultant and work mostly with families with autistic children. Some days I find it so hard to get them to try the things you have.

Congrats!! I am so happy for your progress. I wondered if you wouldnt mind if I printed you message and shared it with some of my families. I think it would great for them to read.

Please let me know. You can email me at lisa_playtherapist@yahoo.co.uk

Thanks
Lisa

[Dad]

That is why I publish my words on this and other public message boards. If I have something to say that I do not wish to be spread to the four corners of the globe I will use email or private chat.

For years the families of autistic children were shoved into the dust of the back corner, ignored by the Psychologist, abused and neglected by the public schools, ignored by the medical world. God bless Bill Gates and company if for no other reason than for allowing the proliferation of the internet. It has been as instrumental as any other single factor in empowering families by the sharing of knowledge over vast diostances and despite the inate isolationism that autism forces upon families.

But please, do not just share my words, share the links to message boards like this one. The more parents we can get into the arena, the better chance we have of being heard.

Here is another good link to share

http://home.pacbell.net/cscomp/dmain.htm

Good luck to you!

[DSCARR5]

That is so super!!!Thanks for sharing that. Parents are the best at figuring these things out!!You made my day!!Donna C

[Dave]

Dad's son is Speaking!
That's great news Dad, I know how happy you must be. Some people might say "big deal", but for us after years of not hearing and waiting for our children to speak, it's beautiful.

[Dad]

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 another 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.

[Cheryl]

it's very sad and disheartening that you have had such a bad time with your sons teacher. it's like all things, there are people out there who really don;t care for those who have to have extra care, but there are some who would do everything.
I am in australia, and when my child was in pre-school and teachers kept coming to me saying they "thought" there was a problem, i just kept denying it, and would go home and cry and shout, and accuse them of meddling in my child's life!!!
Finally, i had to accept, and it was very hard, and there are days that the tears still come. She is now in a mainstream school, she is in an ordinary class with a government funded aide teacher who has her for at least 2 hours a day. yes the first year of school had it's hard days, days where she would not respond, didn't know one kid from the next. Now 1 year later, she still has the bad days, but not so many, she has her routine set, and she even told me some names of kids she wants to have at her 7th birthday party on Saturday. For her to recall any names in itself is a miracle, i just hope some of them come, and that their mum's don;t keep them home, because "hannah is different", and doesn;t interact like the others!!! Yes she is a lot slower, and will always need the extra, and need protection as she gets older, but that's what her dad and i are here for i guess, and we will do what we can. i am very happy with the school and teachers, we have meetings every 3 months and have a daily diary that she keeps in her bag, so if there is something that needs to be said it is written. It is a school with only 235 kids, i pray it doesn;t get any bigger, for her sake. yes, there is bad, but, there is good.
Cheryl