Do all parents with severe ASD children want a cure?

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There was some woman who had a whole bunch of tapes, and a whole bunch of advice. He posted in the "other ASD's other than Asperger's Forum" (not the exact title). Perhaps she still has her website open. I'll go look at it now.

HisMom, the situation is far from hopeless.

You should really look at the thread: "Kids w/classic autism, pdd-nos & speech delays, it's presented as a "sticky" type of thing.

The lady's screen name is BlondeAmbition, and her website is www.freevideosforautistickids.com

That should, at least, give you a starting point.

PS: I hope you don't dislike me LOL

HisMom -- I bet the DIR/Floortime folks would be all over finding a way to expand his love of music into relating and communicating. Seems like there could be a path where love of music could lead to specific songs could lead to echolalia of lyrics could lead to communication. If you do a search for DIR/Floortime on youtube, there are some introductory videos that give the philosophy and flavor of the approach.

Yeah, that's a thread I started..all of the moms you are talking to here have contributed to that thread at some point.

My guy was pre verbal(he had some words but very rarely used them) until this year, 4. He loves music and that is how we could get him to say words. I made up little songs, using tunes he liked. We started with small sounds, like yah, oh or animal sounds. Things he would verbalize on his own and then built up from there. He always loved ABCs and we would do cheerleader chants to spell words. For the longest time he would just say the letters, but eventually he would say the words. Even more than hearing his voice, it was a great way to communicate back and forth. Now that he is speaking more, he still loves the songs so we keep them up. God knows what my neighbors think of my constant singing commentary, esp since I am tone deaf.

I have 2 friends whose sons did not speak until their 5th year. One thing that a number of parents I have known have found helpful was conceptualizing their child as PREverbal instead of NONverbal. Non-verbal has a very final tone to it. Pre-verbal leaves wide-open the possibility of the development of communication, especially if you forgo the idea that speaking is the only way a person can communicate.

4 is very young. At 4, my daughter had a 1:1 aide at school. At 8, she is fully mainstreamed with minimal pull-out and no extra in-class support. If you would have asked me when she was 4 if she would ever be where she is today, my answer would have been "I hope" with no underlying expectation that it would happen. Does that mean that all children progress as my daughter has? No. I know it doesn't. But it does mean that some do. You cannot know what your son's future holds.

I don't know how to say the next part that I want to say, because I realize it is going to sound ridiculously judgmental and I cannot think of a way to put into words what I want to say in any other way.

When I read your posts, I can hear how much you love your son. I have no doubt at all about that fact.

What I also read is...well...when I read your posts, I feel...anguish, anxiety, a kind of impending-doom-darkness. It makes me feel very uncomfortable and it makes me want to recoil from what you are saying on a deep level, even though the rational part of me can understand where you are coming from. But that rational part has to really struggle to overcome the gutteral feeling I get when I read your posts.

I am not telling you this because I think you should bear some kind of responsibility for my feelings. Not at all.

If I had one hope for you and your son, it would be that you could get past all of the angst, worry, circular negative thinking, and...don't know the word for it...the sense that you can't fully breathe.

I have found that no matter how much I love my children, the thing that affects them the most is my emotional state. I don't mean this to say that you are in any way at fault for any thing your son experiences or that you are a bad parent or anything like that. But over the years I have seen many parents devolve into people I don't think they were to begin with. And the common denominator I have seen in each case that I have personally witnessed is...a tenacious grasp on the singular focus on longterm outcomes. I am not sure that sentence makes sense. What I mean is that the fear of things that may never come to pass becomes so consuming and intense that it becomes all-encompassing and overrides what is.

I realize I am likely saying this all wrong, and I want to close by telling you that my intent is not to offend you at all. I just wish you would give yourself permission to breathe every once in awhile. Without thought of burden, fear, or helplessness. Just a chance to realize that we never know where life is going to take us and no one has guarantees. The image that comes to mind right now is that when you are caught in a riptide, your instinct tells you to fight, but your only real chance for survival is to let go. While I have never been in a riptide before, I can only imagine that there must come a point where you have to consciously override the fear that is controlling your body and take a leap of faith...and just go where the current takes you.

In fear that I am making less and less sense as I go on and on...I will stop typing now

No offense taken at all, because what you are saying is TRUE. There are days I feel like I am in a long, dark tunnel and there is no sign of any light - not even the distant twinkle of a little star. I guess what killed my hope was all the negativity of the female dogs around me, representing a notorious school district who wanted to wear me down so that I wouldn't fight for my son. And they did it by repeatedly telling me that my son is eventually destined for an institution. Of course, it left a permanent deep scar, not least because a part of me agreed with them. He didnt give me a chance to believe in him. At 3, he had the skills of an infant - this was also confirmed by an assessment that I independently got done (which the district did not pay for). It was a nightmare that I won't wish on anyone. I think few things are as devastating as realizing that your child is so severely delayed that he will never have a future. That naturally leads to worries about that future - about what would happen once we (parents) are dead and gone.

I honestly wish I could just let go of these fears and enjoy him as he is. He is a delightful little fellow, despite his delays. I guess it could be a lot worse. There was a time that I thought that he would never be potty trained or eat on his own, so maybe he will eventually be able to play, explore and communicate, too. So, I do get what you are saying, but I just cannot accept the fact that all the dreams I had for him (from the time I found out that it was a boy !) have been stolen from me. I honestly don't know how to let go and dream new dreams for him.

Edited to add :

This is also why my hubby is so much more better off than I am where our son's challenges are concerned. He is a guy of very few words, and his response has always been a stoic, "he is going to be OK", to everything anyone says about DS. He has never once got angry or emotional at IEP meetings or at clinic meetings or at assessments, just sat there and said, "he is going to be OK", no matter what. I don't know why he says that or if he *truly* believes it, but he just doesn't seem to care (at least on the surface) and just won't seem to take any negatives as the gospel truth. According to him, MIT isn't off his sights yet.

So, I feel like I have to "worry for two" if you KWIM ? It also makes me want to sock him from time to time. MIT, indeed.

My dreams for my son included that he would play on the Yankees. I even chose a name that I thought would be suitable for a baseball player. It isn't his ADHD, NLD, or SPD that stole those dreams (well, ok, maybe it is the SPD), it is the fact that he is him and I am me. IOW, I think as parents the only "right" we have to dream for our kids is that they will be happy and reach their potential. Any dream other than that is a reflection of our wants and dreams, not a true reflection of respect for our kids and their individuality.

As long as my dream for both of my kids is that they are happy and that they reach their potential, that dream is always in reach, because each day is an opportunity to get one step closer. And even if we don't get closer today, tomorrow we might.

Have you ever tried CBT? You might find it helpful. You seem to have a number of thought patterns that you could probably learn to counteract and extinguish. It might give you some relief and help you change your perspective into something that leaves you with more energy.

Frankly, I have reached that point that my only "dreams" for my son is that he gains the ability to communicate at least enough so that he can tell others if ANYONE OR ANYTHING upsets or ever mistreats him. That is all I care about. Health, happiness, peace is all fine and all, but the basic ability to communicate his needs, wants, difficulties (such as pain) and any mistreatment take precedence.

He recently recovered from pink eye. He was whiny and upset for two whole days and we couldn't figure out why until the infection progressed to the point that we could see its obvious signs, I took him to the doctor (a new one who did not know his "history") who proceeded to ask him if he was in pain, if his eyes felt itchy blah blah blah. My son does not have the receptive or the expressive language to understand and answer these queries. So, ALL I want for him at this point is to please be able to communicate (not talk, but communicate) if anything or anyone hurts, upsets or bothers him, and if he wants anything or lacks anything.

That is where I am. It is not easy to be positive when faced with the situation that my boy can't tell me his basic, basic , basic needs.

I echo almost exactly what HisMom says above. My boy cannot talk at all, and that means when his teeth were giving him hell the only way he could tell us was by headbutting us, and wanting to be driven around in the car the entire hours of daylight (calming for him and a distraction from the pain). The stupid Hospital said there was nothing wrong with him and eventually discharged us with a letter saying his acting up was behavioural. A visit to another hospital revealed he needed three crowns and a bunch of fillings.

However we have taught my son to use an iPod and an AAC app for basic things. He has got a pretty good handle on the food items and activities in there. We hope to teach him how to show us that things hurt and then maybe point to them. Oh yeah it would be nice if he knew how to point too

It really is a bottom line for me for my son; the ability to communicate when in need. I had a kidney stone recently, and was in a lot of pain, but I could tell people where it was hurting and all that sort of thing. I worry that my son will have something like this one day and not be able to tell anyone.

Snap
Well thats good to hear about Claudia. I talked to her a lot a few years ago via PM about our kids and wrote a lot about my experience of ABA, and what was good and what was not so good and so-on.

On the subject of cure..when my son was first diagnosed, I was all cure this and cure that..but now well I don't really think about it much. I don't believe a 'cure' as such is likely to be possible, not ruling it out, but just think it's unlikely I do believe however that there will be some medicine to help in some sort of aspect one day.

But aside from my whining in the post above I do see slow progress in my son all the time. And that is something to cherish, and that gives me a bit of hope and confidence for his future that I didn't once have. For example today he took me to the door by hand. And I said "if you want to go out show me with your iPod". And so he pressed "Walk with Mahe" (Mahe is our service dog). So I hooked them up and then we walked to the bottom of the street and then he made a definite pull to try and cross the road. So I said "Show me what you want to do" and he navigated and found with some prompting "The Dairy" (what we call a convenience store here) so we walked there, and once inside he scanned all the lollie shelves carefully tapping each bag carefully and looking at it, then went to another aisle scanned slowly up and down and selected a small packet and I then prompted him to take it to the counter and I bought and paid for it and we then ate them.

So if you think about that - with some prompting - was an outing devised by my son to a location of his choice to attain something of great importance to him If I am to think about this and compare to some time ago when he had no communication that is quite outstanding. And the careful scanning and selection was something new. In the past he would grab the nearest packet off the shelf and basically begin gnawing on the plastic of the packet. And in this growing of his communication ability any self harm that he had in the past has evaporated. Zilch. He used to hit himself in frustration, now - nothing (at least it seems to me thats why it went away).

For his iPod over many iterations we have devised a jerkin thing he wears and the iPod sits in a pocket with a retractor so it can't get lost. We have taught him to get it out and put it in someones hand and then navigate and choose what he wants. All this has taken quite a long time - years, beginning with PECS. I do hope to get him to learn to spell and stuff so he can make up things he wants rather than rely on what we put on there for him, and we are working on him learning to read and write. At the moment it's therapists attempting to teach him about letters, and me basically just reading age appropriate learner books to him and pointing out the words. That part is my idea and what I do, I get six books a week out of the library and just read them slowly to him and point out the words as I read them. He seems to spend about 5% of his time actually looking as he mostly stims with a straw in his hand, but if he's learning nothing at the very least I am humouring myself and we are hanging out together doing something.

So it's not too bad when you look at it on the whole.

Pain is a hard thing for them to communicate. In my to-do -list, is to teach a 5-point visual pain meter. Unfortunately my son can hurt himself and not feel it AND alternately over-feel pain that is not proportional to a particular injury. So once I actually implement it, I am not sure what will happen with it.

(I could not find the 5-point one, right now, but it looks a lot like these: http://www.ahutton.com/cgw/pain-scale-options.htm )

ASDMom

This a major one on my to do list as well. I recently had a ABA therapist visit who was a licensed speech therapist as well, so her entire patient group is ASD kids. When we talked about what was important to me, I said the same thing. I explained since his high tolerance for pain I really didn't know how we were going to work on this. I already have taught him body parts, but not sure where to go from there. She said the next step was when we hurt ourselves to over play it for him, make a big deal about it and point out where it hurts. When he does hurt himself, make sure we verbalize what he hurt.

I think the pain scale is great to incorporate, maybe Tim and I will start using it when we get hurt. We use it for kids and non verbal folks in the hospital, so I know it works.

THANKS!
Edit: Also, that way if he is hurt and at the hospital, he will already be familiar with the pain scale since it is universally used. Brilliant idea ASDMom!! !!

Think of the angel ! !! ! Welcome back, Nostromo ! !! !! !! !! It is great to finally see you posting ! !!

It is great to hear that your son is now communicating, even if non-verbally ! Yep, I do believe that Claudia's son is much higher functioning now although I could be wrong.

BTW, have you looked into the Oelwein's method of teaching children to read ? I have heard that it is usually successful, so that is on my to-do list. I have been looking at Rapid Prompting Method but don't quite know if my son would respond to that (he will probably not relish the paper tearing and the constant chatter). I really think the Oelwein method might work for our kids, though.

The "not looking at books" seems to be a constant theme with quite a few kids. Mine stims on the pictures - I have him look at board books, and lift-and-flap books, and he may actually look at them only 5% of the time, too. Thing is, he flips through the pages really fast, as he knows that he will be allowed to leave, once we reach the end of the book ! It is quite hilarious to see him flipping the pages REALLY fast. AND, he also tends to yawn openly when the books come out - even though we KNOW he isn't sleepy. It is almost eerie that he yawns to non verbally show his boredom !

Anyway, wow, it is great to finally see you back ! !! ! PLEASE stick around, if you can ! !!

Last edited by HisMom on 22 Apr 2014, 1:04 pm, edited 2 times in total.

Mine tends to ignore most pain, too, until it gets out of control. What makes this especially difficult is his inability to comprehend adjectives such as "itchy", "painful" etc. So this would be on the top of my to-do list. I will look into the 5-point scale, too. Thank you for the heads-up.

I'm an aspie raising a daughter with classic autism. I don't want a cure for autism, but I'm desperate for a cure for severe expressive and receptive language disorder. I can't imagine any parent of a child with expressive and receptive language disorder, whether it is caused by autism, Down's syndrome, stroke, acquired brain injury etc, who doesn't want their child to be able to communicate. Wanting a cure for severe expressive and receptive language delay does not make parents of 'severe' children any less pro-diversity or prone to become a curabie than parents of high functioning children. Frankly, that's a stereotype and as a parent of a severe child I find that stereotype offensive.

Btw, I love this site, but it is long past time to set up a sub forum for issues relating to the non-verbal and those with severe speech delay. I am well aware that there is a sticky thread at the top of the parents page, but its not sufficient. Non-verbal still make up 30% of the spectrum and we (parents and adult members) are underrepresented here, and a sub forum would help address this.