Not a cure, just appropriate support

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Well for me its really nice to have Bauhauswife around; another parent of a child similar to James.

I feel the same way about both of you!

I feel like we're getting hung up on the word "cure".

Along with my son's Down Syndrome, he also received a crippling case of bilateral clubfoot. Walking is most certainly a useful form of human function, and does enhance a person's enjoyment and fullness of life, but clubfoot won't kill you and he could most certainly maintain mobility through the use of a wheelchair. However, we had his feet repaired because it just didn't sit well with us to have our son wheelchair-bound for the rest of his life.

As a result of the flat facial structure that comes with DS, he suffered repeated sinus infections, so we chose to have his tonsils and adenoids removed. The DS remains.

I don't want his DS to go away; for all I know that's where his joyful disposition comes from, and I love that about him. It would crush me to see that light put out.

We aren't seeking to cure his DS, we're simply removing the obstacles that are a result of the DS.

I would like to remove the obstacles that result form his autism.

I feel a lot less alone too.

Bauhaus.....
I am new here and your last post really resonated with me.
in 2003 my husband and i lost a baby at 6 moths gestation due to severe spina bifida (he had club feet too ), when i fell pregnant after much counselling with Jy (my now 5 year old suspect aspie) during a scan and after an amniocentesis we were told a high rate of 50 percent chance our boy be born with DS. Obviously after already enduring the loss of my first born we didnt really care, and would be happy with what we were given. Jy was born without DS and was a very difficult child to raise in comparrison to my other son Levi who is now 4.
We are waiting on an AS assessment for Jy at present, and i said to my husband just last night that if i could take away his Aspergers traits and give him DS ones i would in a heartbeat. The spirited love is amazing.....and although my Jy is highly affectionate he sustains the sullen-ness of an aspie child.
You and your child have touched me- THANKYOU.

x Kel

I have considered CDD and other things, but I don't think so. And he is not stupid for want of a better word. I sometimes wonder if he doesnt talk because he doesn't see the purpose..or something. I'm not telling the whole picture either, while I haven't heard him talk in a year or more, not a word, others have heard single words. They can be months apart. Not so long ago he said 'cake' apparently very clear, when that's what he really wanted. All attempts to elicit speech are in vain though. He does quite a bit of vocalizing; e.g. Sort of Groaning noises, and all sorts of clicking and humming sounds when he's doing things interesting to him which is looking at shapes and comparing two or more of the same things. He accomodates change well, and even gets bored of his surroundings and the things around him, and needs change to light him up. He likes very much to get out of the house and go for a drive or to a park or the supermarket even. This was a bit hard for him but he is fine now. I took him to mcdonalds a few days ago and he bolted upstairs while I was in a slow queue getting some fries for him, upstairs I find him at a table with some strangers, calmly seated, and beaming up at them obviously hoping for some of their fries. They are just looking in him with bemusement!
He is not toilet trained and shows no awareness of having filled his nappies. Apparently this is because he doesnt know..but I do wonder if he's just not at all bothered and knows someone will sort it out. He has never done any drawing apart from scribbles. Used to do puzzles very well, but would now prefer to just look at the pieces and spin them in his hands and hold two pieces adjacent and move them around and look at them.
He sleeps like a log and eats well. He shows no apparent sensitivities to sensory things, apart from not liking noisy/crowded places which he is getting over. He can bring me a PECS card for a food item and I will tell him to bring me a bowl and he will do it.
As for the parents..my wife has definite gifted/slightly aspie traits, me, well the first yr of school I was labelled ret*d, until I did I IQ tests, I had to teach myself how to write and do maths. My daughter has Dyspraxia and giftedness. So I'd say my son has Autism.

I guess this is what I keep finding problems with in this thread and why I am reacting poorly to it. My son is not sullen and I resent people suggesting that "sullen-ness" is indicative of ASD. I will leave you all to it now and unsubscribe from this one. I'm glad you've all found one another and are able to share your woes about autism, I just don't have those woes and see my son in a very positive light. Even though I find parenting not what I expected and often quite challenging, even on my worst days I would not think to assign comments like "sullen-ness of an aspie child" to any child on the autistic spectrum. That just makes me sad.

If I felt like none of you could be of any assistance to me, I wouldn't have sought out a forum of Aspies, diagnosed or otherwise. I know there are a lot of people who can't afford an official DX and for some it's a moot point; it doesn't make then any less autistic or less able to help me in understanding my son. The only reason my son needs an official DX is for the purpose of services. I'm no fool, I know he has autism or some variation of it.

I might be getting mixed up with Fragile X..but are their different levels of severity of DS depending on how mutated the chromosomes are..or something like that..?

Nice to hear he is a happy boy, my son is often a very very happy chap too..it's one of the things that makes me wonder a lot.

DS(the trisomy-21 variety) has varying degrees of mental delay and physical disability. I'm not sure what dictates the degree of symptoms or physical characteristics. It's a grab-bag of sorts, and there's really no way of knowing which traits your child will have or how severe or mild they will be. There are other forms of DS(Trisomy-18, Mosiac DS...), but my son and most others will get the "standard issue" LOL!!

In my ignorance of DS, I asked my son's geneticist, "How bad is his Down Syndrome?" He pretty much told me that there is no way to tell for sure, and that I would just have to wait and see as time went on. It's been an interesting unfolding I'll say that much.

And yes, he is a very happy little guy. He's never really been one to cry or be easily upset, and he does seem to shake things off pretty quickly when he does get upset or injured. He doesn't do well in crowded places where there's a lot of commotion, and large family gatherings can be a bit much for him. He use to cry in these situations, but now he just withdraws. I'll find him in my mother's kitchen chewing on a throw rug or stimming with a hand towel.

Amongst all the anger in this thread, you just made me a little weepy. Don't worry, it's the good kind.

It's amazing to me that with all the information out there, and all of the medical advancements, we still have an 80-90% abortion rate with DS prenatal diagnosis. People want perfect children. There's really no such thing!! People underestimate what they think they can handle in terms of a disabled child.

Perhaps it's just that we can't relate to eachother's experiences with autism. It doesn't make us wrong or you wrong, it just makes us different. I think I know what she means by sullen-ness, it's the flat sort of expressionless affect that some children with autism can have. This is a well-documented aspect of autism, so I'm not sure I understand why it's causing you so much distress. Perhaps it's the wording??

I could be wrong, but if Ominous is feeling disturbed by the same things I am on this thread, then here's my best attempt at explaining it:

The tone and language and content of some posts on this thread just drip with disrespect for Autism as a legitimate and beautiful way of being. It is one thing to have discussions about specific challenges resulting from autism, and how to address those challenges - we do that here all the time - but that's not what's going on in some of the posts on this thread.

Bauhauswife, one of your latest posts explained your desire to remove obstacles rather than cure the core of autism in your child, and I thought that provided great clarity to your position. But it wasn't at all how your previous posts sounded to me, so that took some of us a while to figure out.

The thread has now veered off into the most bizarre territory, where we are talking about how we'd like our child more if we could swap their disorder for a different one that has a sunnier disposition.

SERIOUSLY?

I just can't even begin to describe how it must feel to read that, if you are a person with Asperger Syndrome. I pray my son never has someone say to him, "I wish you had Down Syndrome because at least you would have been easier for your mother to raise, and you'd be nicer to be around".

That is profoundy disrespectful and offensive to me as a mother of a child with AS. It may not be "supportive" of me to say that, but I'm entitled to say it because I feel it is inappropriate for people to talk about aspies that way.

THAT is where the tone of this thread has taken us, and while I totally understand what DW's point was when she asked if we are here for support first and activism second - I am not just here to find support for MYSELF - I am also here to find SUPPORT FOR MY SON. And he has AS. So sometimes the line between activism and support is erased, when I'm confronted with posts that are the antithesis of supportive for my son.

It is good for people to find others who they can relate to in terms of their experiences. I'm just not sure an Aspie-oriented forum is the right place to share some of the feelings that have been shared on this thread.

It does help to have more of the picture. Earlier it sounded to me like you were saying he'd lost his knowledge of words, but from this description I think it's clear he hasn't, since he can bring you an item you request verbally. He still has the comprehension; he just doesn't use the words as much as he used to. I bet he understands almost everything you tell him, even if he doesn't show a response.

I suspect that what was going on with the words is similar to what went on with the puzzles. He used the words a lot when he was experimenting with them and learning how to say them. He solved the puzzles when he was trying to figure out puzzles. After a while he knew the words and knew how to solve the puzzles, so there wasn't much point in doing them any more. As you say, he doesn't see the purpose.

But that's not really regression; it's actually progress that he's learned those things and is ready for new things. He still looks at the puzzle pieces because he thinks there may be more to understand about them. And I think it's clear he's ready for new things given how you say he likes change.

Given this additional information, I agree it sounds more like autism. But I also think that, for example, his being happy is part of his autism, part of why he doesn't speak much, and a 'cure' that caused him to speak more might do so by removing that happiness.

It doesn't sound like that's what you really want. What you want is more akin to additional learning: you'd like him to get to the point where it's easier for him to ask you for things verbally, because that might be quicker and more convenient for both of you; you'd like him to be progressing on to more difficult puzzles, perhaps, and you'd like to be more confident about his understanding what you say. And of course some of that learning may be on your part, and not just on his.

I don't think she wants to hurt us, it's just what she thinks. My son has classic autism and he's not easy to raise, but I never dreamt to "cure" him. Maybe because I never saw him as a "normal" boy. Nostromo and Bauhauswife saw their son interact in a non-autistic way and now they act autistic, so they can dream to converse with them like you do with an NT child. I didn't even in my dreams...