sallys I understand exactly how you feel after Nick was evaluated and dx'd with autism I was as mad as H*LL. But I wanted to learn all that there was to learn and what I needed to do to help him, the first book I read was Overcoming Autism, after I read the book I was so unhappy thinking there is no way I can be this strong and noway I am ever gonna find anyone to help me and my son the way the mother in the book helped her son, but ..... I agree with cherylann I am lucky... now Nick is far from being cured but with the help of a great private school that I am so fortunate to have near me and our school district is paying the tuition for him to go and with the ABA he has in 6 months come along way he is doing things that would have taken me years to teach him at home and things that they don't teach in regular preschool, like brushing teeth and making your own bowl of cereal, also how to deal with things on your own like buttoning your pants and wiping your nose all of the little things that NT kids can do with out even thinking about it, all of the skills he needs to beable to cope and deal in regular ed. He has really surprised me and my whole family.....by no means do I think he is cured but it gives me alot of hope that he can do it and he will beable to cope with life as he gets older. I had to put all of the books away for a while and stop talking about autism for a while because it seemed like it was consuming my life and my time for my other children....I was so busy trying to get everyone else to understand what autism is and why Nick had been acting the way he was for so long,that I stopped being what he needs the most ......his mommy, today when he got off the bus we went outside and flew his kite and when his dad got home from work we went to Friendlys and he sat the whole time like a little man and ate his grilled cheese and fries and then his cone head sundae wiping his own mouth with his napkin without me having to tell him to. I looked across the table at him and thought this is the little boy I have been waiting for, and he is gonna be ok. Just my thoughts and opinions.. but sallys don't ever feel that it is impossible because it is not.
Nita
Sallys,
I hear ya!! Especially with the part you said about "all children do things like that" etc. Yes...All children DO have thier own little quirks but a NT child does not have them to the degree or amount of quirks as my son does..LOL When people say things like this i call that ignorance. My family which is very large (but lives far away) is filled with ignorance. This is probably a really big reason that I don't talk to them really. I keep in contact with one of my sisters that is quite educated on autism and she STILL doesn't fully understand the way that I do about my son. That is because she is not his mother. Her daughter has a Speech impairment that is not even noticable now but she does often compare my son to the way her daughter was. There are some simularities there but my son has SO MUCH MORE going on with him other than just his speech delay. For instance....if you ask my son a question that you know he can answer...sometimes he won't answer it. This I blame on the fact that he has a lack of pleasing others which is a SOCIAL thing and has nothing to do with speech. These social problems make his language delay seem so much worse I think. As far as a "cure"...LOL tell that to the thousands of parents who HAVE spent thousands of dollars on every imaginable therapy to include ABA, chelaton, etc and still have children that are not "CURED". I do agree with you and everyone else here that with therapies some of our children have the potential to be able to not meet critera for the spectrum later in life...Or go unnoticed to the untrained eye and for that reason...I believe no one should give up on that goal or dream.
Karrie
Hi-
Just throwing in here too. Jessi is pretty complex as most of her problems are a mix of her genetic disease and the autism. So she can have a period where she does great and people say "She doesn't act autistic". What does that mean?
Or, "All kids throw tantrums". I LOVE THAT ONE. Yes, all kids throw tantrums and GET OVER IT. They don't sit and scream and be fussy all the rest of the day, so much so that you can't even touch the kid without her screaming and having a fit. Yes, all kids may hit, but do they make themselves bleed and smear it all overthemselves and not care? Do they touch the hot stove and have no reaction to it, but yet if someone touches them they scream?
It's really hard some days not to listen to "those people" but I'm learning. They just have no idea. I hear all this talk about "cure" too, and I wonder. I think ahead a few years, with as awesome as Jessi is doing and think there is NO way that she is going to be "indistinguisible from her peers". She's just different, and that's ok. I think you can teach them to function in society if you're lucky, but I agree that "Won't it always be there"? Like another here said, the child may be fine until one thing happens, and BAM they lose it.
Sorry about the vent, but you sure made me remember some dumb comments I've heard in the last year as well.
Sarah
I have had several different people declare to me that autism (assuming they mean all the spectrum disorders) is "curable" either through diet or behavior therapy or some combination miracle. Then there are all those books that propose that ASD is curable because they are written by those moms who were "brave enough" and "loved their child enough" and pursued the "right" therapies to "bring them back".
It makes me wonder (and quite honestly, angry). I thought ASD was a neurological disorder that has lifelong implications, so that even if someone learns to function well in society they are still on the spectrum. If there is a "cure", I don't see how it could possibly work for every kid or else there wouldn't be ASD anymore. We'd have CURED it, right.
It also bothers me when people tell me "we're all on the spectrum", "all kids do those things" or that children today are being "overdiagnosed", etc. etc. I hear that type of thing a lot. I know what they are trying to say (it is a spectrum after all), but it's about the level of IMPAIRMENT and not liking bright lights or loud noises is not the same as being HURT by them or unable to cope with them period, not to mention all the diagnositic criteria of having significant impairment in language developement, social interactions, etc. To me, it belittles what my poor dd has to go through every day just to try to learn to speak or cope, and also what I as a parent go through trying to help her and live with it all!
It's like saying if your child has ASD still, it's because you haven't "cured" her. Or it's not so bad because we all have it to one degree or another. Somebody told my DH today that their 3 yr old grandson or somebody was cured through diet intervention and that all kids display the symptoms of ASD so she doesn't believe ASD really exists. That's where this post is originating from - I HATE hearing stuff like that right now (so soon after diagnosis, everything feels so raw and I am so sad and angry), whereas maybe to others that provides hope and makes them feel better....I don't know. I don't think people MEAN to upset me with these comments, but the comments feel hurtful nonetheless.
I know that ST and preschool are helping my dd (and drugs, behavior therapy, OT or whatnot may or may not also help her or any child on the spectrum) but I would say they're a long way from curing her. I also see a lot of websites for "recovery" from autism, which I haven't looked at myself because I didn't think there was such a thing. Then there's that Let Me Hear Your Voice book which I can't bring myself to read (just can't handle it, I need escapist stuff) and other books like that where the mother is writing this success story about her cured kids. Then I think, WHOA, I better read that book, SHE CURED HER KIDS!!!!!
I just wondered what you guys thought about this idea that there is a cure and that we're all on the spectrum????
hi everyone
one of the hardest parts about having a child with a special need is dealing with other peoples ignorance i have 3 kids my youngest has a series of complex problems including ASD,he is one of twins so you can imagine the fun we have people telling me how lucky i am that the "other one" is ok,which for the record she is not we have just started the rollercoaster of assesment for ASD with her too.We have also had "well he looks FAIRLY normal" not sure what people want him to look like maybe they think he should grow a extra head or have a neon sign flashing above him,sorry my first post on the board and i'm ranting.I don't often let it get me i have learnt to tell myself that other peoples ignorance is there problem and not mine but i have had a long time to put up with the stares Jack is 6 and a 1/2 now and has had problems from day one though i will tell you what i did notice when he got his wheelchair 6 months ago (he had previously used a snugg seat and a major buggy) he suddenly became invisible people went out of there way to avoid looking at him.I don't know what to make of it all i'm hoping that when jack starts his new school in september (he is going to a autistic resource base) we will see a improvement but so long has he is happy i really think that anything else is a bonus
again,sorry for the rant
Dee
Again, I feel I want to say that ... I think people say things like "He'll outgrow it" or "ALL toddlers do that!" be/c they honestly don't know what else to say. If we didn't have children on the spectrum, would WE know what to say if a friend's child was dx'd with it? I certainly wouldn't. I'd feel awkward and sorry for them and I'd want to try to find something to say to give them comfort. Some people think that giving hope (even if it's false hope) is better than saying nothing at all. Dee ... that's part of what we're hear for! We don't mind ranting. :) Feel free to vent all you want. Who else will understand better?