MsWhatsit,
I can imagine the thoughts and emotions that are going through your head right now. I have a close friend who has a child who is severely autistic. The boy is currently 10 years old. It has been a tremendous challenge to her, but in the end she and her husband and extended family have been able to meet that challenge with a great deal of help from outside the family as well.
No one can say exactly what will happen in the future with your child, but there are reasons to be optimistic.
Temple Grandin’s TED talk about autism is *really *good. She talks about the idea that it takes all kinds of people to make the world go 'round. And autistic people tend to have a *much *better-than-average capacity for attention to detail (for the things that interest them).
Temple Grandin is an inspiration to me!
I wish I had a good forum to refer you to, but I’ve found most of them have the same arguments as everywhere else and the same people taking offense to other opinions.
My daughter is eight and she’s really come a long way but she still has a lot of trouble making friends. She wants to, and she’s really social but from what I can tell she’s a little too aggressive. She also loves her computer games. I probably drive people on FB crazy with her gaming status updates. She used to be obsessed with numbers but I think third grade math has ruined her love.
If you haven’t already done so, I suggest reading The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism. It’s a very short and easy read, and describes autism from the viewpoint of someone who has it.
The Thinking Person’s Guide to Autism has evidence-based information that’s helpful.
While I’m here, might I hijack with a request?
I’m (hopefully) going to be starting a job search here in the next couple of years. Is there a reliable source that can fill us in on what services each state has for autistic children? Perhaps even ranking them from best to worst? Finding a place where my daughter can get the help she needs is going to be a major factor in any decision we make.
The site you are referring to is wrongplanet.net , not to be confused with wrongplanet,com(which is now a parking space for autism related advertising).
Let me second this. I don’t have any autistic kids in my family, but have been working with autistic kids who are being mainstreamed a lot in the last year or so. It’s a very good book. Check it out.
This is second hand, but my boss was once looking for work near Irvine, CA because he had heard good things about their school support for autistic kids. Googling shows that there a UC Irvine Center for Autism Research and Treatment (CART), so I guess that’s not surprising. That would have been a move within California, so it’s a hotspot.
My son worked for awhile as a tutor to autistic preschoolers and that was provided by the school district through contract companies. (So I don’t know what’s available in other districts.) Some tutors worked in the home. He worked at a special school (clinic) that preschoolers would attend for one on one tutoring with other kids nearby. Every kid had a different list of skills to work on each day and it was updated weekly.
When they were ready, kids would transition to Head Start with an attendant or to kindergarten with an attendant. I think some kids attended kindergarten and then came to the clinic. No idea where things went from there.
It’s normal - what you are feeling. My daughter received a diagnosis of something at right around 2 years (JRA, and not a big deal, it turns out) but of course, everything I read on the Internet had her potentially wheelchair bound and in severe pain for life (neither of which turned into reality).
Truth is, it’s devastating to get any sort of diagnosis for our babies.
I have very little to offer in the way of advice, just that what you are feeling, and being in a dark place for a while, is normal. Just don’t stay there.
I respectfully disagree. You have to worry now, because as Senegoid mentions, there is almost no support for most children after the age of 8. When you say the world will be different in twenty years for autistic people, you are absolutely right in that there will be more of them needing support with very little available in resources. My son is 14 with a more severe form of autism and even at this age we have found NOTHING other than an all inclusive little league. And that’s about it. And I live in the Dallas/Ft Worth area. I was advised by a resource representative for our school district to sign him up for assistance NOW because there is an 8 year waiting list. My husband and I worry and make arrangements, for the care of my son in the event something were to happen to us. But I will agree with on this part of your recommendation, you must not and should not spend your every waking moment fearing what will happen to your disabled child, etc. Enjoy, celebrate in your own way and love the individuality of your special needs child. Sometimes as parents we tend to grieve a little too much to remember that you didn’t lose your child, and they still need your love today.
I’m sorry, MsWhatsit. I know it’s hard right now. I’ve been there, done that, and bought the t-shirt. My son was diagnosed with Asperger’s at age 3. OK, it’s a different color and size t-shirt than yours, but they both say “Austism Land”. (Austism Land sucks, BTW. I think you know this.) Our situation was different than yours. (I’m Mama Zappa’s husband, in case you didn’t know.) While I can tell you that our experience has been more hopeful than I could have dreamed 16 years ago, I was not ready to process that same idea at your current stage in the process. If you need to hold onto hope, it’s there by the ton. If you can’t deal with that now, that’s OK. There is a grieving process around getting a special needs diagnosis.
When my son was first diagnosed it was some months before I could read anything about Autism or Asperger’s without getting nauseous. That passed, and we were able to learn and work and help him. Your mileage will vary - and that is OK.
We have had good luck with therapists and social skills groups. Our county schools have been fantastic - but we know other parents who had to go to war with the schools to get them to follow Federal law. :mad: That’s not today’s fight, so please do not worry about it today. Wait until you’re ready to take on that fight, and until you have to.
I’m rambling, but please PM me or Mama Zappa if you want to talk about anything.
Ms whatisit… Hey… I was their… my then wife and I had the same situation with my now 16yr old… He was diagnosed at the Univ of Kansas … and then received help here in Atlanta at the Marcus Center in dekalb. What we did was find that thing that he enjoyed… that gave him good feelings and gave him the ability to communicate with other kids and give him victories. That thing happened to be basketball… My son was reading at one… at two he memorized all the numbers and use to drive his teachers crazy with his desire to count and to pour everything and measure it… One teacher in Kansas City… thought is was fun to call my son “Rain Man”… You are going to run into people who are just going to hurt your heart sometimes…
Jordan was big on capitals… we got him the leap frog globe and he preceded to memorize capitals of every country in the world… Perhaps he wasn’t as far on the spectrum as your kidlet… but nevertheless… the IEP we got… the school here in Atlanta Public school worked with him… he had some special classes and really learned empathy and social skills… we constantly worked with him and got through what could be some heartbreaking moments… His desire to not live… his feelings of incredibly loneliness… their were times in the car where he just would break down crying…
Today… he’s a soph at a private school here… a star football and basketball player… (I couldnt really get off the bench in either basketball or baseball… This month he was chosen for his homecoming court and for the first time… HE WENT TO A DANCE WITHOUT us either begging or bribing him… He’s happy… focused… dedicated beyond belief… I have wonderful teachers in elementary to thank… Talk to his teachers… several will work with him… I brough them gifts at XMAS… always provided supplies… My ex-wife was tremendous about looking up everything… It can be worked through… and that thing… that special thing that makes him a little bit odd… can be the thing that drives him past so many others… Good luck… Still waiting on the first girlfriend experience… but so far… he’s a wonderful boy who I cant say I really deserve. BTW if you have any other kids… We really made a point of doing a lot for his sister… because Jordan could be a bit much… but we wanted to make sure she didnt get the short shrift… she’s kicking ass at a boarding school right now.
Their’s something good that can come thru… keep fighting… listening… stay tough on the setbacks… love hugs and a lot of special classes… Good Luck to you!!!
It’s a real worry.
While our son is reasonably smart, his social skills and schooling skills are such that he’s never going to be a high wage earner. As such, we’re doing our best to plan for his future and make sure we’ve got money saved up to supplement whatever he can earn. And he’s got relatively decent self-help skills (though, haircuts, regular showering, and nail clipping are not things that occur to him!).
We have a nephew who is fair more severely impaired; he’s 22 or so, and the ultimate plan is for him to be in a supervised group home. Right now he’s living with his parents (well, one parent at a time, they divorced several years ago). He does receive disability payments, which his mother uses to offset the cost of his meals, housing and entertainment. It’s NOT enough to live on, however. I don’t know what would happen if they didn’t have the means to provide additional support.
One thing that I found recently, if you set up something called a special needs trust for your child (and if there’s any concern of his being unable to support himself, you SHOULD): It’s designed to provide things for the child without rendering him ineligible for assistance based on means - but it CANNOT be used to pay his rent. If it is, that is considered as “in kind support” and can get him booted out of eligibility for assistance. So you can’t plan on using it to supplement his monthly rent, for example.
We know a family whose oldest son (mid 20s) is pretty badly impaired as well (Down’s, but a lot of other issues as well including behavioral) and I gather his needs are being met with some kind of assistance, though part of that was the parents surrendered a lot of control over his placement and there’ve been some pretty significant problems. They are in another state, so I don’t know all the details.
MsWhatsit, we do understand a lot of what you’re going through. In a way, getting the actual diagnosis is both a relief and a kick in the gut - until someone trots out the “yep, he’s autistic” phrase, you can still sort of hold onto the hope that it’s something more easily “fixable”. On the other hand, having that label can help him get the help and services he needs.
We had Dweezil tested at not-quite-3, by the Early Intervention folks; we had the option of being referred directly to the school district team (which offers services as young as 2), or Early Intervention, and chose EI because they had a shorter time frame to do the testing and start with services. So we came out of the EI evaluation reeling; we’d gone in hoping that they’d say “nope, he’s fine, just a handful”. When he started the school district testing, we went into it worried they would NOT find him eligible - quite an attitude shift in 3 months!
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Please tell me you reported that teacher to the higher-ups. There is no FUCKING WAY teachers should be calling kids names.
Of course (and yes, we know we’re going straight to hell for this): when Dweezil was 3 or 4, he “got” the whole Halloween thing and wanted to go trick-or-treating - but he freaked when we brought out a costume for him. So I took him in his regular clothes - and when I told my husband about it, I said “I just decided he was going as Rainman”. And a few years later we were setting him up for an email account, he couldn’t think of a name - maybe something train-related as he loved them so much… and when he was out of the room, I whispered to my husband “how about ‘Trainman’”.
So yeah, we’re going to hell, but we never said that to his face or to make fun of him - and a lot of times it was either laugh or cry. We chose laughing when we could.
:o Gawrsh!
But… sane? SANE??? Where on earth did you get an outlandish idea like that??? 
W the Y is getting really good school support. As luck would have it, our neighborhood school (it’s actually 7 miles away, but it’s the elementary school we’re districted into) also houses one of the school district’s autism units. Meaning that even if he hadn’t started out in this school, he likely would have been transferred there anyway. So that worked out well. He is in a mainstream first-grade classroom, but has a full-time aide (provided by the district) in the classroom as well as a slew of pull-out services to help him with fine motor/gross motor/social skills/etc. Now that he has an official diagnosis from the Children’s Hospital network, he may also start receiving services via their system. We aren’t sure about that yet.
Anyway, in the past year or so we’ve gone from, “He’s got some delays but nothing he won’t grow out of” to “this is more serious than we thought” to “I’m not sure if he will be able to live independently someday.” I mean, maybe he will. But maybe he won’t. I just don’t know what this is all going to mean for our family.
We do have a lot of support here, from the school, from his medical team, and from family. So that’s good. Also, he is incredibly happy and good-natured, which also helps a lot. I think it would be harder if he were constantly angry, or depressed, or sad. (He does have meltdowns, but they are decreasing in frequency.)
I really can’t say how much I appreciate all the support from you guys.
Oh, I should mention - we were at the autism center earlier for his follow-up evaluation, and while I was sitting in the waiting area, I saw a lot of other people and their kids come through. It was such a relief to me to just see other kids exhibiting the same behaviors my kid exhibits - not responding to their names, being more interested in the TV than in saying hello to a therapist, etc. It was like… ahhh, he’s not alone. You know?
I suppose I was not clear enough. Don’t worry now doesn’t mean wait a few years. It means, at the very least, spend a few weeks navigating the completely new here-and-now. Get through the next few weeks and whole new vistas of worry will open up. It is very easy to get overwhelmed in the beginning, so all I am suggesting is how to cope with that.
Our son was diagnosed a month before he turned two, and he is now 21. We immediately enrolled him in every program, trial, or special service we could find. He had LOTS of support during all of his school years, and we believe that he benefitted from school supports to the extent he was capable of benefitting.
When he left school at age 19 (received a “certificate of attendance”, not a HS diploma), he had the option of continuing on in the public school system until age 23, but he felt like he had “graduated”, and didn’t want to continue in school. He wanted a job. We were disappointed to find that Vocational Rehabilitation didn’t have a lot to offer him. He was evaluated several times, and they determined that he would never be able to work independently, so he didn’t qualify for Voc Rehab services.
After much searching and fighting with the state disability folks, he was recently placed in a sheltered workshop environment. He is picked up by a public transportation service every morning, and goes to his “job” five days a week. He absolutely loves it! He has social outlets, something to do, a routine to follow. And every other week he brings home his paycheck, which usually comes out to around $20. It’s not enough to affect his disability income, but he gets to go to the bank and cash his check and put spending money in his wallet.
Our son has splinter skills that make him appear very bright (excellent verbal skills, reading skills, memorization skills), but overall he is extremely judgment impaired, and will never be able to live independently. We went to court when he turned 21 and became his legal guardians so that we can make legal and medical decisions for him. He will live with us, his parents, as long as he wants to. We have him on the list for group homes if he ever wants to move out of our home, or if we are no longer able to care for him. We have designated two of our children in our will to be his legal guardians when we die, and we have talked with them about making sure he is safe and well cared for.
We have done everything we can think of to make sure he is loved, happy and has a safe home to live in. Now that we have attended to all the details, we can relax and just enjoy having him in our lives. He is a joy and delight to us, and we enjoy each day we have with him.
You’re in Columbus? It has one of the best schools in the country for autistic kids - in fact right now I am considering moving there just for the school for my kid (there are several schools/places I am looking at but this one is near the top).
I looked at that. But he’s doing so well in his regular school district (and his teachers seem to love him) that I’m inclined to keep him there unless someone tells us not to. It is nice to have options, though.
C’bus is great if you decide to move here, btw. I thought I was going to hate it after Chicago and Seattle, but it’s really grown on me.