Monday, April 4, 2011

Autism's Lost Generation

For those of you who don't get the Sunday paper, or for those of you who get it only for the coupons and the Target flyer, the cover story of Parade magazine featured a story about young autistic adults who are about to transition out of the school system.

The headline "Autism's Lost Generation" refers to children currently coming of age before there are adult services, group homes, vocational training, etc., enough to handle their numbers.  The article notes that "in the next 15 years, an estimated 500,000 autistic children will graduate out of school systems in the U.S. and into the unknown."  

Audrey will be included in that half a million.  If today's generation is the Lost Generation, then she will be a part of the Boomer Generation who will come of age in exactly 15 years.  Is anyone out there gearing up for this juggernaut?  It sure doesn't sound like it from the article.  They talked about the advocacy going on right now for this current generation, and what parents are doing in the face of this dearth of services.
"...parents are calling local businesses to craft makeshift job programs—or even pooling their resources to buy property and hire support staff to create assisted-living situations for groups of autistic adults."
This reminded me of my proposal to form an Alpha Sigma Delta fraternity/sorority house for our kids.  AS-Delts y'all!  OK, maybe not the best nickname.  But the idea is a good one, and hopefully by the time I'm den mother to our chapter, the trailblazing parents ahead of me will have worked out all the kinks.

The other thing that struck me about the article was when they spoke of the girl in the article having an older NT sister:
"The Eismans’ older daughter, who is 22 and in graduate school, has said that she’ll always be there for her sister, but (her parents) do not want to force that responsibility on her."
You guys with the NT siblings always effing say that.  But, be honest, you know that the NT sibling will always be there as a safety net when you are dead and gone and you totally sleep easier at night knowing that.  Right?  Right.  I understand not wanting to tell your 5 year-old how they are going to have to take care of big/little brother/sister for the rest of their lives, but at 22...guess what?  You're on the hook, sister. 

Audrey doesn't have any siblings and I was 82 when I had her, so this is something I think about every. single. day.  I'm petrified at the thought of what will become of her when I am gone.  Really really really petrified.  But just a teeny weeny smidge short of being petrified enough to actually give her a sibling.  I mean, let's not go crazy.

I'm going to be writing more on this cheery subject this week because, as it happens, Thursday is Audrey's annual IEP meeting.  And I will be making some decisions presently that will impact her life when she comes to the end of her years within the school system.

But more on that later.  As the reader of gozillions of special needs blogs, I know that for me IEP posts are my absolute favorites. *erp*  So you have that to look forward to...

39 comments:

  1. Okay I hope you weren't really 82 when you had your daughter. I just hope that is your dyslexia talking/typing. I was a bit older when I had my son and he's my only child. My ex has a 2nd child from his marriage after us but that kid is a hot mess too (said in a good natured joking manner) so I don't know who's going to take care of who. LOL

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  2. I read that article and it made me sob.

    We try to make sure my NT daughter knows that she is not responsible for her brother. But we know that, if push came to shove, there would be no stoppong her.

    At least I'm young and in good health! *sob*

    Can't wait for those IEP posts.

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  3. I read that article yesterday and it brought me back to what the specialists talked to us about putting together a trust for her incase she can't take care of herself and we are not around. Apparently we must win the lotto between now and then because we are barely making it now. Sigh.

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  4. The situation is scary for all kids growing up with the sorts of disabilities that will require them to be under someone's care for the entirety of their lives. I know that the waiting list here is at least 10 years and we have six sets of parents here in Ontario who are in their 80's (and one in their 90's) still caring for their disabled kid. As for the sibling thing...I can only speak for myself. My eldest is NOT expected to care for her sister, as a matter of fact, I will not allow it. She has been told this since DAY 1. I do not sleep well at night because she is there. I have to set up a life for Sophie and the Eldest will continue to be her sister...not her caregiver.

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  5. This article scared me. Son is 12 and is an only child. Only a couple more years before we start the "transition" planning.

    I am in such a bad place right now I can't even think about what is needed for the IEP meeting next week.

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  6. The article is definitely scary when you think of just how many kids are going to be competing for state funding, and how few programs are out there. But as more kids transition out of the system, more programs are going to be out there. Call me the eternal optimist, but things are changing all the time, and 15 years is a long ways off still. That's more than twice Audrey's whole life so far! It's smart to plan for the worst, but keep a little hope out there too.
    You know it must be Spring when IEP meetings start popping up, I can't wait for the posts!

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  7. This topic makes me clenched and vomitty. Do they make xanax dispensers with flip top heads?

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  8. uggh. I wish i'd read that article, maybe I can find online?

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  9. @sherri- Parade.com and you will find it right on top of the page!

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  10. I had a friend who has a low functioning brother with DS send me a message long ago when I was lamenting what would happen when I was gone.
    She said that when her brother was 20, they decided a group home was the best option for him. That they didn't want to take away his 'rite of passage' as an adult, that he should have all the opportunities every other person has. To deny him of that would be wrong.
    She has a sister as well, who doesn't see much of him (but she stressed how much she loves him), and she herself calls him every single day to talk to him. Her parents visit him several times a week.
    She told me to make sure my daughter has a choice as to how involved she is in his life. That she would undoubtedly be someday, but that she needed to have the opportunity to live as well (maybe even moreso, her brother's disability means she misses out on a lot).
    I don't know what we'll do in the future. For now, my little man is 5, and happy as a lark. But I don't expect my daughter to live her one life caring for her brother - but caring ABOUT her brother - I 100% expect that.

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  11. well again you made me laugh.
    and no i disagree. see, i tell my kids all the time that YES they are responsible for their brothers. ever read it in the bible that "you are your brothers keeper"? I don't see anything wrong with placing that "burden" on siblings....since its not a burden its called LOVE. If you love your brother you will take care of them. Its simple. I guess I see things differently. I actually have been telling my kids these thinsg all along and tell them at least once a week how family comes first and they are to take care of each other and love one another forever. Living a life just for yourself and not caring about anyone else is just selfish and unfullfilling. I don't want THAT life for my other children. I want a life full of love for them.

    given the crazy idea that an earthquake comes and wipes everyone out but my son(s) with pdd-nos I can't worry about it. Things that are beyond my control I can't worry about. Thats where God comes in.

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  12. The Boy is almost 16. He's already in the transition phase, and the lack of services is scary.

    I do have two adult daughters, and the younger had said in the past that she would help him...but she's 1000 miles away and now a wife (and is hoping to become a mom)...so I don't know that she'll still be up for the task.

    The Boy has the answer - he tells me again and again that I cannot die.

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  13. At this point, that would be only reason I'd have another kid, but I'd NEVER take that risk. Yes, I kinda suck.

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  14. This is scary stuff. I know getting old isn't ever easy, but it especially sucks for those of us whose fears go beyond wrinkles and nursing homes...

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  15. I read that article and was like 'thanks for ruining my Sunday' cause it's something I don't want to think about and it makes me sick to really think long and hard about it.

    God go with you for your IEP meeting. Lord, I despise those....

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  16. Shoot! I had no idea you were into IEP posts. I let Jaylen's last one go without a post because it was so infuriating. Should I go back and write something up?

    And my NT won't be able to take care of his brother because he's a freakin spazz. Even at 2 years of age I can tell Jaylen will be better off on his own that if Xavi takes over...

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  17. Um, Lynn, have to bring your words back to you here..."fuck you for making me think about this." There, sorry. Yep, the thoughts that keep me up at night...and will take years off my life if I don't learn to stop. Good luck with the IEP...just had ours a couple weeks ago, and actually went reasonably well.

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  18. Oh lord - the memories of IEP meetings... At least my son is 26 and too old for those. But, sorry. No good news from the adult autism living front. Our son has a good situation (www.rhd-mo.org) which is a companion model home - not a group home. Group homes would not work for him (partly due to the "doesn't play well with others" thing and part to his meltdowns). But it costs $100 grand a year!!! And the parents must be nonexistent or about dead to get living support...or crazy and sick...and no, I am not saying which one applies!

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  19. @C... @Mommyto2Boys: I guess you do have to take into account the kind of person that the sibling is. Any sibling is a non-existent "strawman" to me, but of course every situation is different.

    @BD: I know that I speak for all of the ladies when I say that we love your soft squishy underbelly.

    @BWMFA: Yeah, I always see these lectures and seminars on special needs trusts, but I think you need something to put in them once they are set up :(

    @Claire: I totally get that a situation with a severely disabled child that requires 24hr care and where there is only one sibling that it would fall to, is a completely different ballgame.

    @Sherri: I made a linky in the very first sentence!!

    @Katie: Totally! Like I said to Claire, it can depend on the level of support that the disabled sibling needs.

    @Kim: You said it so much better than me. I completely agree with you. Must be all that Catholicism.

    @JFC: Yes, immortality would certainly solve everything.

    @connorchronicles @Kara @lizbeth: When it comes to the vomit-y posts about the future, someone is always required to pull out the @danig patented "fuck you for making me think about this".

    @OZMO: Oh Lordy, that is indeed not good news. Now I really must go vomit.

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  20. Thank you?? For making me read that article... But one thing that struck me at the end of it is how many people there are dealing with this, how many different methods, routes they're taking to try to deal with the situation in their own way and I have to say (maybe due to my few evening beers?) that despite everything I feel quite hopeful. There are so many of us, so many of them, so many autistic kids turning into autistic adults and parents getting organized, filling the vacuum... Things can only get better, right?

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  21. I haven't read the article, but I did hear about it. I think I am in denial about the future. My son was only diagnosed a year ago and he's 7, so I think I've been so focused on the present that I haven't thought too much about the future. I know that needs to change soon, but I just don't know if I can face it.

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  22. I've been so worried about this I think constantly how to set up a business to employ my son and our friends' kids as they get older. And a housing development. And a long-term care facility.

    He doesn't have any siblings. We don't have any family who would be willing to take him in if something happened to us AND do right by him, care for him, which leaves our life insurance policies and him a ward of the State. Nightmare. Nightmare. Nightmare.

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  23. When I think of dealing with everything with my kids when they are out of the school system? I have a panic attack. We're having enough trouble IN the school system. Eeek! My boys have each other...but they also both have Aspergers. Scary stuff. Can't wait to hear how the IEP goes.

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  24. Bloody hell. What a post to wake up to. Nice one Lynn! I think that the planning is going to have to happen on the front lines, because everyone is government has their heads too far up their own arses.

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  25. I also worry about this all the time. There's no way to predict where the kids will be in the way of independence when they exit the system. I have one NT child with three (because the writing's on the wall about the youngest) autistic siblings. That's a huge responsibility to place on her. Not to mention that one of them is her twin, so if something were to happen to us at a relatively young age, she could be caring for an adult sibling while still in college or newly married herself. She has the right to a career and family of her own. I know that we must plan now for the other three kids--just in case, but I don't know where the money to do that will come from.

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  26. While it's important for us as parents to educate ourselves and be aware of important issues, it doesn't do any good to worry to the point that feel sick. Sometimes we need to be reminded that we are human. We should do everything we can for and in behalf of our kids. However, we must take one day at a time, dealing with issues as we go. Cody is 29 and I have come to learn this the hard way.

    Sooo...Lynn, you were 82 when you had Audrey, huh? :)

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  27. Transition planning is a nightmare. Ack.

    I am in IEP hell right now - on both sides of the table. Emergency IEP meetings for my child, and it's IEP 'season' as it is...

    But looking forward to your post.

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  28. I'm definitely one of those that always say I don't want Corbin to ever feel like he is responsible for his brother....but you are right, it's always back there that he loves him so much I know he's going to be a great brother, no matter the situation- and it does make me feel a teensy weensy bit better...

    this article had my eyes watering when I read it yesterday :(

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  29. Oh and my son is six and I'm going to a transition to adulthood conference next month- a friend is going with me- we keep saying it seems way too early to think about it- but in all reality i don't think there is a too early for this stuff :/

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  30. I have been lurking and reading my son doesn't have an offiial diagnosis yet. However he is 4 and non verbal so the proverbial handwriting is on the wall. He has an 18 yr old brother and a 7yr old sister. I tell his brother that he will be responsible to take are of him if something happens to us. Is it fair? No I know that however I waitress and dad does construction short of us winning the lottery (which alaska doesn't have) I see no alternative.

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  31. Good luck with the IEP! Those are always so much fun!

    I read where there are business that are hiring Aspies to do certain job functions because they have talents in certain areas. I'm sure it won't be far behind that the same will be true for people on other places on the spectrum. Maybe when Audrey is older, you can start a nonprofit employment agency that specializes in these placements.

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  32. Thurs is our IEP meeting, too. Yikes...this one is a huge one for us and I am scared shitless.

    Anywho, I haven't really thought about Ben needing to look out for his sister. I think that is what families, do, though. It's not a chore or a job, it's just part of being a family. I would hope he would want to help her, if she needed it. Well, unless she is still trying to beat the crap out of him everyday as an adult, too.

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  33. I was 84 when I had my son and he is my only child as well so I know exactly how you feel, Lynn. After reading all these posts though, I think we absolutely must plan but still be optimistic that we as a whole will come up with ways to safeguard and help our children as adults when the time comes. We just have to be productive about it and face our fears with concrete plans because that is the best we can do -we can't stop when we worry. Worry is an impetus to confront fear and make a plan to overcome it.

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  34. Other countries aren't any better.... My son is an only child and we transitioned into adult services. However for him, the services do not really exist as he does not have a cognitive impairment. Having autism is not enough even though it is a significant impairment he has (He is not high functioning or Asperger's). As more children are diagnosed, it is something that governments need to address. Even further education and work placement are difficult to arrange or just locate. Right now we found a program that would provide him with a saleable job skill. The organization provides services for youth and persons with disabilities but even say he is a suitable candidate but they have denied him because of his disability. Go figure!

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  35. Daniel's NT sibling has made it perfectly clear he has no intention of taking care of his brother. We have never asked him to however I understand that the sibs generally feel the implied pressure just by virtue of being related. However distasteful and selfish his proclamation may sound he has lived a long life baring a large portion of the aggression, sleepless nights, etc, etc and I appreciate his honesty.
    Those of you who have received such promises of "I'll take care of him or her" don't kid yourselves. Things change. Even with the best of intentions things don't always work as planned. A friend of mine married a man who has a brother with down syndrome. The parents put him in charge of taking care of his brother once they passed on. It took less than a year after their passing that he had a baby of his own, sold the parents property in Los Angeles, put his brother in a group home and moved across country.
    Think of your worst day and take away the attachment you have to your child and imagine someone less connected voluntarily taking on that position.

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  36. The only reason I'm not obsessing more about this issue is that we have so many other problems on the table and I have a real splinter skill at getting totally stuck in the issue of the day with the inability to see past it.
    We did go to a special needs atty who helped with will drafting etc- amazing how many little details there are to think about when planning for a special needs child.
    Funny, but I never actually gave much thought about how/if the non-ASD sister will help my ASD son. Maybe because she is so much younger than he is. I asked her half-jokingly one day and she answered "he should take care of me because he is older" (she doesn't know yet that he has autism). One thing I thought about , for some reason , is what if she has kids on the spectrum herself. Not much to do in that respect- other than a thorough mental health history dating back 4 generations on all prospective dates, maybe? I also thought about -what if we get sick, who will help us in our golden years should we become somehow incapacitated. Though I will gladly turn over my nursing home money towards a group home for my son.
    Lots of bright things to think about :).

    Lillian

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  37. @Apples and Autobots: OH yes...that is way too much to put on one sibling.

    @Heather: Holy cow..you are way on top of things!

    @akwaitress: Very few of us have the luxury of setting up a special needs trust that will be there for our kids for the rest of their lives. Thanks so much for reading and commenting!

    @J: This is obviously a world-wide problem. It's very interesting to see how other countries are/will be dealing with this.

    @Autism Mom: OK, maybe I'm not feeling so much of a disadvantage for Audrey not having a sibling after that story. You're right...there are no guarantees. If I were that kid's parents, I'd be haunting him though.

    @Lillian: I know...very sobering things to think about. I never thought about the NT sibling possibly having ASD kids. It is in their genetics and they probably have a greater probability than the general population. Ugh. More to worry about. I need a drink.

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  38. glad I found your site! Can't wait to read more! My son also has Autism (one psych says Aspergers) and it's wonderful to find someone I can relate to!
    Come say hi at modernmomredefined.blogspot.com

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  39. IEP/CPSE/IFSP (too many acronyms if you ask me!) = right up there with Special Needs finanacial planning for me! I'm interested to hear your take. Just had our reconvene, and are probably going to have to make an appearance in their office come September/October....

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