In tears... Help me, PLEASE

Post Reply New Topic

Not everyone has the resources to provide for their child for the life of the parent plus the life of the child.

In this togather has good points.

From my perspective though, the OP is doing the right thing. My perspective is from both someone with AS who owns a home and works full time, and from someone who works with disability support professionals.

We recently had a student who had intensive therapy as a child graduate from the university despite people saying he wouldn't.

From someone who was in a similar position to you two years ago, it is indeed a bitter pill to swallow. In particular less so the Autism than the fact of the child having a severe intellectual disability. Aside from the practical and life long challenges your child will have society is structured around placing a high value upon intelligence.
You see this attitude even here, I guess its normal.

At one point I even got the idea in my head my son wasn't quite a human in the true sense of the word.

I've gotten over this, but like you I was quite depressed for a long time. But my son did not ask to be the way he is, and neither did we. Theres nothing we can do about it. Instead I concentrate on what we can do, and think about the good life I am going to make for my son, and how I am going to do that.

I will post something longer later about our story so far of my son who sounds very similar, as it may be good for you to read that, but your son WILL be able to sign to you or use PECS. And in the case of our children often..intelligence and the ability to learn and grasp concepts are not related, so never say never.

Hey I was labelled Mentally ret*d at age 5, my tested IQ is about 140, and I work in IT and all that sort of thing, I still find it hard to learn some things.

No, they don't, but the government does. The government can provide financial assistance (enough for food and medication), and also housing if something happens to the parents. There's no need to worry here. (My mother and I are as poor as Church mice.)

My main point overall is, is that old adage:

You accept people for who and what they are, not what you want them to be.

Yeah thats it. I haven't seen that before, I'm gonna borrow that quote.

I am so glad that you "interrupted", InThisTogether.

My main worry is that my son MAY have been misdiagnosed with autism when in reality what he has is a developmental delay - a significant one at that. He is very social and is becoming more and more compliant. The intensive intervention he has been getting - knock on wood - has really done wonders with his compliance. But my bigger concern is the lack of progress in the other areas, such as fine motor skills, expressive language etc.

Plus, of course, the cacophony of messages from the so-called professionals who thought it was appropriate to label a 34 month old toddler 'mentally ret*d' when neurological best practices indicate that such a label should be based on the results of standardized testing that could not even be administered to him due to his lack of speech and lack of compliance at the time of 'evaluation'.

The tragedy is that many services ARE denied to kids who allegedly are MR - which worries me even more. Currently, I am reconsidering my options on where to go from here. I am also trying to work on small goals in areas such as self-help skills, since speech does not seem to on his horizon just yet. I am also working on his attending skills and would love some advise on how to increase his attention span.

His current span is about 10 seconds for non-preferred activities, and, unfortunately, books are HIGHLY non-preferred. I am not expecting him to sit through an entire Charles Dickens novel but I would like him to attend to a baby picture book for at least 30 seconds (baby steps, after all).

Also, he seems more able to sign, if we use the sign consistently. He has about 4 signs right now and I would like to increase his repertoire to about 10 signs over the next 2 months. I believe sign language is much more portable than PECS (since his fingers will always be with him) but I also get conflicting messages about how kids who sign do not talk because they get so dependent / comfortable with having their needs met by simply signing them !

Is this true ?

Odd fiction : What I do with my son now is to speak in "telegram" ! ! As you pointed out, it took me a while to realize that I was just probably overwhelming him with long sentences. So I began to do "short hand speech". My sentences in the past couple of months have been extremely small and limited to no more than 3 words at a time. For example, "look at book" or "get in bathtub" or even just "shoes on", "diaper off", "going bye-bye". Initially I worried that my son would never learn language as it is supposed to be spoken but then I realized how foolish I was being. I am happy to report that since implementing "telegram speech", supported by "semephore telegraph" aka the corrosponding signs, his receptive language has REALLY taken off !

Miss-Understood and Norstrom, would you be able to share your children's journeys so far and what has worked for you and what has not (although I realize that every child is different and what worked for you may not work for my child and vice-versa) ?

Any and all advise would be greatly appreciated. I have a lot of learning to do and the input of fellow parents who are sharing this journey is greatly appreciated.

Thanks !

Mental retardation ain't the end of the world either.

IQ is for the most part, only a predictor for how well someone does at school (not to mention that you can't really determine the actual intelligence (IQ) of someone who lacks verbal ability; it's more than likely that their spatial awareness is at least average or close to it). I know of a lot of people, lets just say most of my peers at school, all of which were average or above in IQ; they were all utterly stupid people, full of prejudice and bullying behavior. They were all mean. If having MR/autism means you won't behave like them, then I say it's a blessing.

There's no shame in autism, in MR, in being dependent. There's no shame in anything that doesn't harm another human being. Your boy will be ok as long as his body lives, and there'll always be people there to help. There's nothing to be afraid of here.

InThisTogether,

My mother never cried for me. The only time she was upset was when I was in physical pain and sick; she always accepted me for who I was otherwise. She brought up my lack of speech, but back then it was just a "boy thing". She didn't mind when it kept on lacking; surprised her when it just came along, but she didn't love and think any better of me just because of that. She thought I was "slow" too from an early age (let's just say trying to teach me something as a young child was a futile effort), and that I'd never be a mathematician; which was fine with her as everyone has a place in life, even if it's actually not working, just existing with the ailment you had no say in at birth. For some, just existing is work, and it can be equal to any profession in existence in importance; enduring with disability is something to be proud of with your offspring. "Slow", disabled, ret*d; the only negatives about these are the connotation we apply to them.

Actually no, the government doesn't have the resources to care for everyone. I don't even believe when I retire (I'm 26) the government will be able to pay my SS checks. And it's a gross abuse of resources to provide them for people who could have been productive citizens but because "acceptance only" never got the help that could have made them productive citizens.

I don't agree, you push people to achieve new heights. You don't force them to do things they truly can't do, but you push them out of their comfort zone at times to advance and grow.

InThisTogether and thewhitrbbit - I have to say, your words are very thought provoking and I appreciate that. You both give really good advice without being overbearing. Thank you.

You might consider looking into speech or OT with a therapist trained in DIR/Floortime. Look for videos and books by Stanley Greenspan. The whole focus of that approach is to figure out how the child currently engages with the world, and to expand on it and foster the desire to communicate.

There is a young man locally who had little communication until he was 16. One of his teachers somehow connected with him, and now at 22 he communicates through typing and is attending community college. He and his mother have co-authored a book called A Full Lofe With Autism.

Your welcome.

HisMom,

My son's issues are different, so take what I say in that vein. (We have more trouble with non-verbal vs the verbal communication.)

I do not think that by teaching signing you are discouraging your son to speak. I wish we could have done so with my son, but his non verbal skills lag terribly. He would not even try. I think any communication is better than no communication. It is is very frustrating for a child to have unmet needs because he can not tell anyone what they are. My son's worst meltdowns were when he did not have the ability to tell us what he meant. I believe that holds true regardless of whether the vocabulary is verbal or non verbal. His bonding and trust for you will improve as his communication improves because his needs will be better met. If he can sign his emotions, that is just as good in some developmental respects as doing so verbally.


Autism is a developmental delay, also, just not in the same things as MR. Some autistic kids are more social than others. I think it too early to know for sure.

Autism IS, by definition, a developmental delay.

Actually, they do. Autism allows you disability and also government housing if you're disabled by it (and you will be). It's there in law.

I agree that you have to put people out of their comfort zone if it'll help (for survival after all), and things like OCD and other anxiety disorders are a perfect example of this. They respond to CBT and exposure therapy.

Autism is an entirely different horse which doesn't get better by therapy. O, you might force them to make better eye contact by constantly putting their hands in the fire (that's figuratively with a literal connotation). Autism is mediated by the severity of itself, how you're born; it sometimes gets better (better tends to mean closer to Asperger's, which is disabling all the same), but then it can go back to how it was.

No point hiding from the reality of autism. No point in thinking it's the end of the world for your child and you start to question whether you should have had him or not.

You love the child you brought into life against his will, who has no say over any disability he was born with; autism, Down's Syndrome, and whatever, he ain't any less worthy of life than the most "perfect" child.

The perfect child is the child that's alive, and when they die, we remember the perfection, no matter the disability or lack of.

Well, let me first say that although my son (K, 13yrs) has a label of moderate intellectual disability, I don't believe he has that. When they told me he was in the severe range of intellectual disability (he tested this way until he was 6/7), I didn't believe that either. I do believe he has severe Autism, and that is what makes it so difficult for him to learn things, or to show us he has learned something. He really is locked in a world of his own and to draw him out is very difficult.

K's is expressive language is limited to 2 words together and is very hard to understand. We have tried for years to try to make his speech clearer, it hasn't worked. So, the focus is off that now and on to getting him to use PECS and his ipad (proloquo2go app) to communicate. He is doing really well, especially with the ipad. He is typing simple requests, words we didn't even know he knew how to spell (his handwriting is illegible). He has never signed either, everyone signs around him but he has never done it himself. He also doesn't gesture in other ways but he now understands them. So we sign and use picture cards to give him a visual to connect with the words we are saying. We have done this since he was 2 and he understands all the pictures and signs. As a result, his receptive language has improved alot. We still use that 'telegram' speech with K, if I get too wordy with him, the message is lost in the clutter of what I'm saying and the more anxious or stressed he is, the more important to keep it 'to the point'.

Speaking of anxious and stressed, as K is such a visual learner we use lots of visual schedules. He doesn't like changes to his routine and he doesn't like not knowing what is going to happen. At home and school, we have very clear visual sequences of how his day will go (we use Boardmaker program to make them) and this helps him alot. He gets to help choose what we will do, it's important he gets to pick things he likes to keep him motivated.

K is hyperactive too. He has always been the kid to climb the fence and run away. Couldn't sit at the desk to finish anything. When he started school, the O/T said he has proprioception problems, that makes him need to move and fidget almost constantly. He still does this, so there are lots of things at home and school to give him this feedback he needs (egs. trampoline, swings, hammock, gym balls to sit/roll on, balls to bounce). He also has a need to chew, so he has chewy tube, it also helps him focus. I would definitely say that since we have found this out and since we have discovered the types of sensory things he needs and avoids, it has helped us to help him stay comfortable. He is now able to sit for much longer periods of time and actually learn. The school give him breaks to move or to check out for a bit if he needs to. We have all learnt that pushing him past his threshold is counterproductive and is likely to keep him in a stressed state for longer, so it's a delicate balance really to get him to do things, learn and comply whilst respecting his limits and how much he can truly handle.

Medications, some have helped, some not. If you need to go down this path in the future make such you have a doctor who you are very comfortable with, you want to be sure that the doctor is taking this path for the benefit of your child. Medication is always the last resort, but sometimes it is very necessary. K is taking medication at the moment which is helping his irritability and anxiety. He is still irritable and anxious but there is an improvement, without medication it overwhelms him- he can't learn, focus or interact at all.

You are on the right track with your son. Even if he seems to be not making progress, he will be taking it all in. Don't assume because he can't show you yet, that he is not learning. We have thought this many times!
So, I hope this helps a bit. Yes, you have lots to learn about your little boy. I really believe no one thing works, different things for different people- so it's really a matter of finding out what does it for him. He will communicate and learn and you will all be ok. We are- 13 years down the track... and we've even had 4 children come along after K (he is our eldest). #4 has mild autism, completely different set of worries there but they all love their big brother and that is the main thing I've wanted for him, he needs to be loved and happy and then everything will be ok. I really believe that.

The government has a limited amount of money. You can dream that disability will always be there for everyone, anyone who reads the news there is a real concern.



So I suppose the autistic students who graduate from college based on years of therapy are no better than the high school drop out who's parents decided on "acceptance only?" I see every day students with autism and AS who through years of therapy, have learned to manage their disability. Some of them have job offers before graduating. They have worked hard, hours of therapy, meeting with disability support people weekly, but you know what, they were pushed, and they are college graduates with a chance to make a life for themselves without needing welfare.

But I guess that doesn't matter because no one gets better with therapy.

I wish the best for both you and your son.