In tears... Help me, PLEASE

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Autism is an entirely different horse which doesn't get better by therapy. [/quote]

I suppose that is true if you are talking about psychotherapy. Or if by "better" you mean "cured."

However, if you are talking about improvements gained through speech, occupational, and physical therapy, then I have to differ with you. My daughter was helped a great deal by all three. I do agree with you that the effects are constrained by an individual's neurology, but to say that autism doesn't get better by therapy would be inaccurate.

Nice to see you with your 'chin up' HisMom. Your emotions and thoughts are completely normal, you could have been writing my thoughts from several years ago.

About my son:

My son is nearly six, non-verbal, not toilet trained - yet. As measured on a Vineland II functional assessement he's below the bottom 0.1%. He is labelled Autistic and 'Globally Delayed'.
Also his Autism is regressive in that once he had words, imitation skills, pointing. That all went away.

In terms of not progressing in early intervention compared to other kids, I well remember after my son was first diagnosed at age 3, we went to an 'Earlybird course' for parents of children newly DXed with Autism. There were 6 families there and the people running the course had visited us before and taken video of our kids - so they could play it on the 1st day of the course and show other families something about the other children (only the parents were on the course).
My sons was last, I was looking forward to seeing the video of the other kids, but then the videos started and there were kids doing things like..writing words, reading books, and talking and playing simple games, and I was in shock thinking THAT IS AUTISM?? Then our sons video came on last and there he was lying on the floor making weird noises and doing a bad job of trying to stuff Mr Potato Heads arm where his hat is supposed to go.

At the time, I felt as if the diagnosis of Autism was bad enough, but then I felt like here he was sinking to the very bottom of that unfortunate pile. The next two years were hard coming to terms with things.

We have been doing ABA since shortly after DX, as much as we can pay for, about 12-15 hours a week. Progress has been slow, but its always there and now he uses PECS up to about 50 different ones, and we are transitioning him to iPod/iPad using Proloquo2Go, really just to keep the PECS explosion under control (all those little plastic cards). We never had any success with signing. I never tried, but people from the university did for quite a while.
It took at least a year to get basic PECS going with him. All the tiny things that seem obvious are hard for him e.g..learning to flip the PECS page to look for more PECS took a long time.

I can now do small things like point to the floor and ask him to pick something up that he's dropped, but his receptive language is not good. When I say "bring me plate" and point to the cupboard he might get a bowl out. But really its a miracle that he listens to me at all as he didn't used to.

While what he can do is limited, I also look at other children who have not been lucky enough to have that work put into them - the poor little kids have no form of communication and as a result have behaviour challenges and a lot more melt downs so its very much worth it, even when it seems slow going there is progress being made.

I've had to reset my expectations and accept he won't work or live independantly. I've found that once you've let go of those thoughts, then you can move on and think about how to make a decent life for them - now and going forward into the future. Anything achieved above my current expectations will be considered a bonus.
I also think sometimes about a relative of mine who was blind, deaf and paralysed, and look at my son running happily in the yard in the sun staring at a twig in his hand..and that makes me think quite differently about the supposed major problem we have on our hands.

I look for the positives. My son is very cuddly, he's tall and good looking, has a terrific laugh, eats more variedly than his 11yr old sister (I even got him drinking coffee the other day!), sleeps through the night..all good things.

And I remind myself that whats important is there is a little person inside there who needs our help, and thats all what matters.

On a lighter note related to being non-verbal, me and my son just had a weekend alone together without my wife and daughter who were away on a trip, my god it was peaceful without all the chatter

If he doesn't speak or write, how can they measure his intelligence at all?
As there are plenty of highly-intelligent autistics who do not speak, this should not be taken as an indication of low IQ.
An IQ test for a non-verbal preschooler... stupid idea

Norstromo, your post made me cry. It was so heart-warming and heart-rending at the same time. It was all about a father's love and a father's pain. I began to cry about half way through and re-read your message many, many, many times... You sound exactly like me. How crappy I feel when I see the other preschoolers in his class do puzzles, speak SOME words, run around playing happily (even if on their own), reading books, pointing to objects, imitating occasionally, signing, using PECS, and just seeming to be catching up with their peers. Then I turn around and look at my son....

A lot of stress is due to his speech delay and his utter lack of interest in speaking. His speech therapist actually wondered why he would NOT be interested in speaking. If only he would say a single word and mean what the word actually means...IF ONLY.

Kudos to you, Dad...I hope one day that I will arrive at the same point of acceptance, love and peace that you are in. Right now, unfortunately, that point is still a very distant speck ion the horizon....

Last edited by HisMom on 16 Sep 2012, 10:25 am, edited 1 time in total.

Before she started speaking I don't think my daughter had the slightest clue what speaking was FOR. Even after she was speaking, sometimes she wouldn't answer my questions and when I would ask her why, she said "I was thinking it." IOW, she did not understand that I do not have access to her thoughts. Can you find someone who does Verbal Behavior Analysis? It's an offshoot of ABA directed specifically at language acquisition and it helped my daughter make that connection.

Thank you HisMom I am well pleased, to pass something on that might help someone, even if its just relating a shared experience so you don't feel so alone
Its funny now, I don't feel bad for us anymore, because I think we have a good life, and we are all pretty happy now. But I feel quite bad for people like you going through what we went through, I know what you are feeling.
I do feel very different now. At the time..of course I spent all my time on the Internet reading dire thing after dire thing. I would go to work and sit in front of my monitor and pretend that I had dust in my eyes for a long time..

I will tell you a little about my sons older sister, because its kindof relevant.

She was DX with Dyspraxia at 5, and she always had trouble learning at school. I recall being quite disappointed. All our friends kids and her friends picked up reading and other schoolwork so much faster than her, and she was always behind. We used to take her off to OT once a week from school, and at school she had extra help, one-on-one and was in the remedial groups. We always had to tell her one thing at a time, and to this day I still need to tell her what to do at bedtime - Toilet, brush-teeth, Pyjamas..its been the same routine for about 8 years!
Anyway later she got a bit better at school and was more towards the average, but still below average. Then 2 years ago, we went to a Parent Teacher interview. And in the interview the teacher showed us the statistical testing and showed us a Bell Curve where my daughter was on the other side of the curve for reading comprehension - in the top 5%. She explained that she was what they call in education 'Twice exceptional' - that is a child with a learning disability who is also gifted. This was very hard for me to get my head around! The school then even put her in the gifted and talented programme. I still remember the shock as the teacher told me all this, and can vividly recall walking back across the school payground holding my daughters hand literally dumb founded.
She's still hopeless at some things. She's 11 and still cannot read an analog clock or bush her hair properly. Yet she is really good with excel for example, and at art, and there is no-one better at picking gifts for people. I just always ask her for ideas on what to buy my wife, she is very thoughtful.

I guess my point in telling you this, is you just never know.

To be honest I expect my son to speak one day. I think it will be when he's older. It's not because I want him to speak, I just really think he will do it when he wants to and has worked out what its for. I really believe that.

Also I was telling him today as I changed his stinky diaper, that we need to get him toilet trained! I hope he gets it later this year in summer, because I'm over dealing with poo, LOL!

Heres a video of my son using a computer a few months ago. A month before he did this I wouldn't of believed it, watching the therapist with her hand over his guiding the mouse and me thinking "no way will he ever get that"! !
If my son can do this things, your son can.

[youtube]http://www.youtube.com/watch?v=WMbZgNSe3gk[/youtube]

I'm in tears now too nostromo. *sniff* very inspiring words

This sounds like my son! He has no physical problems speaking, he just won't use words for communication! I am going to look into this VBA.

My daughter was nonverbal up until her third birthday. Like Inthistogether's daughter, she did not know what speech was for.

I am not familiar with VBA, but I am familiar with PECS and how its use can facilitate speech. We started PECS communication for about 9 months before my daughter said her first word. For her, PECS gives her a visual of what speech communication is. In order for her to get something, she has to give something (the picture). This was POWERFUL for my daughter.

She knows signs now too, but until she understood the visual representation of what communication is and does, she didn't use signs or speak.

Wow, that is so encouraging to know. My son has about 4 signs down and seems to understand that he needs to sign to get what he wants. But he still does not talk. I am hoping he will eventually learn that it is even faster to speak than to sign... !

nostromo, you are twice blessed ! A gifted daughter and a special son.

I am very, very, very encouraged to see your son's video although frankly I don't know if my boy would be able to do this. But hope is a wonderful thing.

Do you live in Australia, btw ? I ask because you mention summer as being later this year !

Thank you, yes we are pretty lucky in many ways. The video is one of those splinter skills, and it still boggles me now to see him do this. Today my son has also just learnt Makaton signing for 'more' pretty much today, yet he's forgotten how to point!
I live further south in New Zealand. ABA is only privately funded here so we pay for it all ourselves, and of course its expensive due to the amount of therapy time but you do what you gotta do and I don't begrudge any of it now

There is no way to tell if he is MR right now since he can't be tested properly with his limited verbal/social skills.

Have you had him checked by a medical doctor? Have they done allergy and toxin testing? I believe that is the place to start. Do you have a DAN! doctor? If not, get one. I suggest pursuing biomedical intervention ASAP. This may be necessary before any improvement from any type of therapy can be seen.