Older kiddos with AS?
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| Mon, 01-16-2006 - 5:27am |
I have a 15 year old kiddo with AS, and also Tourette's and severe ADHD. He has audial processing difficulties and Sensory Integration problems as well. But he also has a 147 IQ, which just makes things a lot rougher in a lot of ways.
He's now approaching adulthood, and the fact is, I am terrified! We have spent well over $100,000 in co-pays and self-pays for all kinds of testing, treatment, therapies, medications, pediatricans, neurologists, psychiatrists, psychologists, neuorpsychologists, occupational therapists, audiologists, behavior specialists, social skills groups, educational facilitators, speech language pragmatics specialists, ENT's, sleep specialists, nutritionists, allergists, etc., etc., etc. Yet he's really no better than when he started.
As he's gotten older, the behaviors he does have only gotten worse and less and less tolerated by the school, community, peers and others. I truly cannot see how this child will ever be able to drive a car, hold a job, pay for his medical expenses, and have an independent life. Making it worse is that he is so smart, he does know what he's missing!
He's also a typical teenager in that he's rebellious, independent spirited, etc. So naturally, in his eyes, we as parents are what is holding him back from having a "great life." But he has no sense of self-control, no impulse control, and whatever his peers do he has to rmap it up to that by the 10th power. He's already been ticketed (and very nearly arrested!) for a severe offense that was entirely due to his inability to meter his responses and due to his very poor scoial skills. A large fine was paid and community service was done, and we feel very lucky for that!
When he was young, there were all kinds of support groups, great ideas and all sorts of supportive things coming our way with him. Now that he's almost grown up, the support is pretty much gone. Now doctors and other professionals are telling us that, "the prognosis for kids like is pretty grim." We've been warned recently by various professionals that in their experience with kids like this, we were lucky it wasn't worse, and that his involvement with the law will likely occur again and again and will likely escalate over time. They advise us to keep a good attorney on retainer, to get to know our local cops, and to teach our child not to speak to law enforcement at all without his attorney present.
The same support groups we used to be part of, I now realize are almost entirely comprised of parents of younger children. Why did I never notice this before?? Even online support groups seem to be this way. I so often find myself wondering if the parents of older kiddos have found some magic cure that has somehow eluded me? Or have they simply thrown in th towels and given up by this point?
I broke down in the neuorologist's office recently. He's been a rock and a supportive godsend for us for many years. But even he is now saying that these kiddos don't really ever change. He admitted that so many times over the years he wanted to tell us that we were throwing good money after bad and were going to bankrupt ourselves trying to help this child (and indeed we came very close to that several times!) But he never had the heart, because he saw how hard we were fighting, and felt that if anyone ever could be sucessful, it would be us. But now it's become clear that we will not be be special....we will not be any more successful than anyone else apparnetly has ever been, in his experience. Now our ling-time therapist wnats to stop "treating" our child too. She says she feesl as f she's doe all she can for him and it's not fair to anyone invovled to keep going with it. She's spent the past 6 months trying to find someone esle who's willing to take him on...to no avail. I call new therpaists and say, "My child has AS" and they immediately say, "Oh, I don't deal with that." A few say they will with young children, but that's it. Nobody seems to know where else to refer us. W've exhausted the resources and opportunities in two major cities!
In some ways, I am soooooo angry that no one told it would end up this way! I am angry that I gave up my career so that I could be available to haul him back and forth to his multitude of appointments and therapies, to fight with appt. clerks and insurance companies, for the endless school meetings, school "rescue missions," etc., etc.
I am angry that my DH has lost one job over this madness (long story), that we have been on the finaincial brink and beyond for years, and that DH and I have both put our own healthcare dangerously on hold for years, all to ensure that this child got what he needed. AND NOBODY TOLD US IT JUST WASN'T GOING TO WORK!!!!!
I never asked for a total cure. Just enough improvements that he could function indpendently and safely in the world. I was soooooo naive! All those wasted hours in waiting rooms, on hold ont he phone fighting insurance and office billing, hours in the car traveling to other cities see new doctors and see6k new therapies. All those hours spent in support groups, listening to the latest "experts" who flew in give lectures about their latest research and therapies. All wasted.
Last week, I spent some time tracking down some of the families we uded to see at the support groups, but whom we'd not seen in years. I spoke to several, and it was my worst fears come to life. Nobody has found anything useful. They've simply throw in in the towel and stopped spending the time and money! Two of them told me that they're now spending money on attorneys and court fines instead of doctors and therapies. ne says their judge keeps ordering therapy, despite the therapists telling the judge that it just doesn't work, just like it's not worked for all the years they did it before in trying to help their child!
OMG!!!!
Still....I don't want to give up!! We've done tooooo much to give up!! There has to be answer somewhere, we've earned it, we've worked for it!!!
Yet I see families with young, recently diagnosed kids and I feel like a fraud. I feel as if I'm part of the same great conspiracy that was used against us. "Don't say anything, don't dash their hopes, don't ruin their dreams for their child. Don't tell them the truth....that it's a huge waste of time, money and energy. Don't tell them their kids will be not get better, will not ever be typical, and that as parents they will never have lives of their own.

This was very painful to read, and my heart does out to you. I have to run to work, so I will come back and write more.
I do know people with older children who were not able to live independent lives, even though they had very high intelligence. I talked at great length with a super mom, whose 28 year old son now lives in an assisted community where his symptoms continue to be treated, and he is monitored. He has friends and work and activities. Much of this is paid for by government assistance.
As this is not me, I cannot speak more to this story, but I have kept it in the back of my mind when thinking about my son.
However, at age 8, my son is really able to participate in society and monitor much of his own behavior, and he may very well be able to lead an independent life. And I have also met many grownups, whose childhoods were very difficult, but who have now managed independence.
Noone can tell us the future because it is different for every child, and truly can't be foreseen!
more later and ((((HUGS))))),
Sara
ilovemalcolm
I just wanted to say I really feel like it seems like you don't have a lot of support right now dealing with your son.From what I have read the teenage years are the worst years for a child with AS and so you would imagine there would more support available for both parent and child.I have also read about the lack of resources available for older adults dealing with AS and even though my son is only 2 it scares me to think I may be in your shoes someday.I think it's up to us as parents to push or state and goverment reps to make sure or kids have the resources they need throughout their lives.
We have a couple of mother's on this site with teenagers who are doing really well but that dosen't mean it's not a constant battle for their parents.I think most of us are in the process of coming to terms with this disorder and I don't believe there is one of us that hasn't thought about what the future holds for our children. I don't believe there is a miracle cure but I have seen with my own eyes my son's progress because of therapy. They are small milestones in a NT child's life but to me and my child they are monumental. I will never give up hope that my son can live a happy and productive life but I know his definition of happiness may not be the same as mine and I'm learning to be okay with that.
Teresa
Hi,
My kids are a bit older but not as old as your son. THey are 11 and 9 (my 2 AS'ers) and I have 2 younger ones as well.
First, I moderate a Asperger's board where there are lots of adults with AS as well as a fair number of parents with older kids. Please stay here too, but you may want to check that one out as well. It can get heated sometimes (they are an oppinionated bunch) but it can be supportive and there are those with older kids like I said. www.aspergerinfo.com
Next, you spoke straight to my fears and frustrations. I have been trying to tell my husband lately that often it just feels really like a waste of time all the effort we put into autism for 2 reasons. Particularly for my son. First, he is high IQ (120) so everyone just assumes he will turn out ok. All my family and what not as well as most of what you read about AS. It is like they are just quirky. Just quirky would be fine. And second because sometimes it feels like no matter what we try we just end up back in the same place we started only worse because he is bigger. There are some improvements from when he was a toddler, sure. But some not so much.
Now for some hopefull thoughts. Last, let me tell you what my therapist said. She works extensively with people with Aspergers and autism of all ages. She has found that teens in puberty with AS revert to what they were like at 4 or 5. They get impossible and then that frontal lobe of thier brain develops and they really start to pull it together in thier late teens and 20's into a much more functional person.
I have heard the same from some of the adult males with AS. That they went through the meltdowns and behavior problems as a teen but then kind of grew out of it.
If this is true you are on the tail end of it! There is hope. I know tourette's typically slows down about then too. In thier teen years the brain and body are doing a lot of growth and development. It can be hard when it is combined with AS.
Sending big hugs and support to help you get through this time. The therapies weren't a waste. He learned skills it is just that his brain and body won't let him use them now. It will help him when he is an adult.
Renee
Hello and welcome.
Reading your post, I clearly hear that there at least two people who need help: You and your son.
Concentrate on you first:
Do you see a therapist or counceller? I think you need to talk to someone about your feelings, and if you possibly can swing it, I think you should consider therapy for yourself. It helped me to deal with my feelings about my son (who is young, BTW)
Also support groups: Start thinking outside the box, and try to find groups of parents with children similar to yourself, regardless of diagnosis. Very often, behavioural kids have other or mixed diagnoses, but even if the DX is not the same, to find someone who will sit on the other side of the table or room, and nod when you describe some of the stuff you are going through, is priceless, and will help you to feel less islolated.
Try searching for support groups around the following:
ADHD (CHADD)
BiPolar Disorder -Many BP kids have out-there behaviours
AA or Al Anon -that's a bit out there, but many alcoholics self medicate undiagnosed disorders with alcohol. There may be resources there to point you to a more suitable group.
Local churches, community centers, hospitals or Universities.
Local special Ed schools -they often have support groups, and I am sure not just for parents of enrolled students. They can definitely point you to resources.
SEPTA if you have one
a support group for parents of young offenders or lawbreakers
OK to your son:
As Renee said, he is at that age when one coudl merrily strangle him. I think this is true of almost any kid, but more so for those with special needs. I do think he will settle down.
He could probably use a support group too.
Is he on meds? If not, would you (did you) consider it? Would he? I have ADHD, and I take meds, and they have helped me a lot. However, I know ADHD meds and not always the best thing for people with AS, anxiety or SID (my SID went out of control for awhile when I started meds), but it's probably worth considering if he is unmedicated, and he may need a meds adjustment if he is.
I am sorry you have been through so much and are feeling so disheartened. I hope you find some light at the end of the tunnel (and it's not a train!)
-Paula
visit my blog at www.onesickmother.com
My son is only 7yrs old, so I have a few more years before he's a teenager. I've heard that the teenage years are very difficult, so I wanted to just give you some hugs and some support from your long journey.
I also fear that everything everyone does for their child, can lead to little or no progress. I'm a sahm, and I work with Nathan on his behavior and his speech at home on a daily basis. (He also gets speech at school) I don't feel that there is a cure, but I do feel and see his progress. I take it day by day. I know not to expect miracles, but I do still hope for something. I think that's what we all do.....is hope. I believe that you did and are still doing so much for your son, because you love him. That's what we moms do.....love our kids and try everything that we can to help them.
I understand your frustration. I often think of the future and wonder exactly how much progress my son will make in the years to come.
michelle
Hi,
I am so sorry to hear all you are going through (((HUGS)))
Hopefully I can maybe give you a glimmer of hope here.
I have an older DS with AS, so maybe I can give you a little in site on the aspergers aspect of an older child. Though my DS does not have Tourette's or ADHD so I don’t know how those would factor in.
But from my experience ages 15 and 16 are going to be the toughest years. At that time I also thought we were never going to make it. I didn’t even think my DS would make it out of high school. Not only was he failing and spending most of his spare time in detention but he was also having suicidal thoughts. (he was then medicated for depression, at about 15). We didn’t have as many problems with peer pressure like it sounds like you do. My DS never really wanted to go out much, probably the depression. Then after a couple of minor incidents he was rarely allowed to be out with a group with no adults anyway , till he was about 17. He was way too immature for his age and I knew he didn‘t have the ability to know when enough was enough. (plus I may have been a bit over protective according to DH) If your DS is having peer problems you may want to check into getting him new peers? Anyway, when I was about to give up all hope my DS settled right down and went from borderline failing school to honor roll his senior year. Almost like he grew up overnight and took control of the things he could.
He is now an A student in College. He also has a 147 IQ which helps a lot. Through everything that we went though I never let him forget that he was basically a Genius. Everyday I kept reminding him until he finally realized just what he could do with that kind of intelligence. We did decide that he would never handle a regular college so he is in a smaller private one, which he fits into very well. He changed from an impossible teen to one of the greatest people you would ever want to meet.
He now claims that just the stress of school caused his depression and problems at school. Which looking back now seems to be right. His worse times started just after 7th grade and lasted till 11th. As soon as he graduated HS he stopped his anti-depressant and it seemed like he was an entirely different person. He hated HS, it was a nightmare for him to deal with. College seems to be a much better situation, he loves it. Now he has been fine though recently he has started taking anxiety meds which calms down his obsessiveness. He went from a kid who couldn’t fit in or deal with anything to a great adult. He is so normal that he likes to freak people out and tell them he is autistic. (He has a wonderfully strange sense of humor)
Now if he could get the hang of driving *shudder at the thought* I am getting tired of driving him all over but his first attempt a couple of years ago was a huge disaster. Now he is still terrified to drive so probably will never go too far but we are hoping that he will be able to get himself to school and work soon.
Hope this gives you some encouragement. Try to stay optimistic and
hopefully things will change for the better for you too.
It is always darkest before the dawn.
Thanks so much for the post. It is great to hear of folks that have made it thru the darkest teen years and there is good on the other side of it. Karen
mom to DD 12 3/4 adhd and recently diagnosed with AS...and incredibly sweet , inventive and imaginative child....that has lots of sensory issues and anger that spurts up quickly at times.
Karen
anything is possible 15 mins at a time