What I Should Have Asked HHS Secretary Sebelius

Waiting at the Apple store
Friday afternoon found me sitting in my office. Jim does not teach on Fridays and is able to pick up Charlie. So I was able to listen in to a conference call with
U.S. Health and Human Services Secretary Kathleen Sebelius about the Obama Administration's initiatives in autism research, treatment, services. As reported in Disability Scoop, out of $5 billion awarded to the National Institutes of Health to study cancer, heart disease, and autism, over $100 million has been allocated for autism research. It's noted that this is the "single largest amount of money" allocated for autism research and that autism was the only "disease"–that was the word used on the conference call—specifically singled out for such funding

Also on the call were: Tom Insel, Director of the NIMH and Chairman of the Interagency Autism Coordinating Committee; Ileana Arias, Acting Deputy Director, Centers for Disease Control and Prevention; and Peter van Dyck, Health Resources and Services Administration Administrator for Maternal and Child Health. Two soon-to-be published studies on the prevalence of autism were highlighted:

(1) A Pediatrics study by the Health Resources and Services Administration (HRSA) that will be published early next week and that discusses how new methods are being tested and new models developed "to better help us prevent and treat autism." This study also looked at results from the National Survey of Children's Health (2000).

(2) A soon-to-be-published report from the CDC that looked at data from the Autism and Developmental Disabilities Monitoring Network. From initial and preliminary analysis, it was noted that there has been an increase in the estimated prevalence of autism spectrum disorders, with approximately 1% of children in the US diagnosed with ASDs. It was noted that this does not mean that here is an actual increase, but may also be due to "methodological differences from earlier surveys and increased awareness." The rate was reported to be 1 in 150 in February of 2007 according to a CDC study; New Jersey was noted as having a prevalence rate of 1 in 94.

The increase in the prevalence rate of autism was the main topic discussed during the call. Listeners could ask questions afterwards and I hesitated. As you know, I've been pretty fired up about Charlie's school situation having fallen apart and, while I'd like people to know about this, I decided to listen to what other people had to say first. 

There was a question from Peter Bell from Autism Speaks about the prevalence rate and how we still don't know what is causing it to rise. There was a request from Lee Grossman of the Autism Society of America to keep the need for services in mind. An official from the Department of Education asked that education be included in discussions about autism as education plays a large role in the well-being and health of autistic individuals. The final comment also noted that the Department of Labor should be included in discussions about autism, as employment is such a key concern; this commenter also noted that not only the needs of autistic adults call for more attention, but also that those who are transitioning into adulthood—adolescents and teenagers—need more attention, too.

That was the point I wanted to make had I been able to ask a question (I dialed in too late). With Charlie's very difficult middle school experiences on my mind, I wanted to say that we need to focus a lot more on the adolescent and teenage years and not simply see them as a "transitional period" or a gateway to adulthood. I've been reflecting again and again about how, when Charlie started middle school, his teacher and the school put a huge emphasis on "what is he going to do when he's an adult? he will be an adult before you know it and what if he has no job skills or self-help skills? where do you want to him to be ten years from now?"

Of course those are seriously important questions that Jim and I have been thinking about way before Charlie ever set foot in middle school. But the answer does not simply lie in turning a child like Charlie, who is developmentally delayed, into a mini-adult; the answer does not lie in teaching him "prerequisite skills" for adulthood. Charlie is still very much a child and he needs nurturing along with high expectations for what he can learn and do. It took him longer than most children to learn preschool skills, so why be in such a rush to have him learn—at the ripe old age of 12 (keeping in mind that Charlie is the youngest student in his current class)—to be an adult now?

After the conference call, Jim called and I met him and Charlie in the black car on JFK Boulevard in Jersey City. We dropped Jim off just before we got to Journal Square (he was to lead a walking tour on the West Side piers tonight) and then went to the fancy-schmancy mall to pick up a computer that had needed repairs. (Yes, that's Charlie in the photo with an image of iPod nanos behind him—same as the iPod that he put in the garbage earlier this week.) We had to wait for awhile and Charlie stood quiet and serious. 

It just so happens that there's a Qdoba right next door to the Apple Store and, once I got the laptop, thence did we head. Six boys, possibly Charlie's age and definitely shorter than him, were in front of us in line. They got quesadillas and talked about how you could get cheaper sodas from the vending machine outside. I ordered Charlie a burrito and he chose a brownie and, after trying to sit in a booth opposite a blond-coiffed, stylishly suited woman, sat at a table. The six boys were behind him and they laughed and ate and pushed at each other. One Latino man sat in the booth beside them; to Charlie's and my right were four 20-something guys (one whose orange shirt said "Los Angeles County Jail") talking about The Office and actors in comedies. They kept their burritos neatly folded in their tinfoil wraps. 

Charlie chowed down immediately starting with the brownie. I saw one of the boys stand up in the booth and squirm out, and three others followed suit. One boy called out "hey! hey!" and yelled that he was still finishing, but the other four were out the door (I saw them gather around the vending machine). One boy got a refill of his soda and came back, glancing at the four who had left. 

Charlie at Qdoba

Charlie ate every last bean and dab of guacamole and threw away the trash when I directed him. We walked through the mall and the Neiman-Marcus cosmetics section (torture—for both of us) and then (after getting gas—the orange warning light reminded us that we needed to, fast) we went home. Charlie took off his shoes and, after asking me, carried a really old computer (the first iMac) into his room. I walked in to hang up some clothes in the closet and found that he had found his old case of Hot Rod cars and selected his two old favorites, a yellow school bus and a helicopter. He asked to put on his socks a half-hour later and we went for a walk beneath a setting sun, passing many a dog and their owner (Charlie was ok about them, as they were all on leashes). Once back inside, he told me "bedtime," jumped into bed, and was asleep by 7.53pm.

He's a big boy growing up, and a little boy still. 

He's a darned swell pal to eat burritos with.


Advertisements
Comments
17 Responses to “What I Should Have Asked HHS Secretary Sebelius”
  1. that is an early bedtime for Charlie, closer to Matt’s time. Nick has been going into plastic containers for his old Lego toys and enjoying memories of his old toys that we still have – got rid of his collection of Bionicles few yrs back on craigslist.

  2. a parent says:

    I went to a talk by Bev Bos, an early childhood educator, and she talked about how with all kids there is this push to make sure the kids have the skills they will need in the future before the actual skills are really relevant. To highlight how ridiculous the practice is she said something like “Do we teach children how to use a walker when they are young because we know they will need it in the future?”

  3. VAB says:

    As you say, it makes no sense. If a kid is developing typically, we say, “This one should stay in school until they are about 22, maybe even 26, if they are really good, and then start working.” But if I kid is developing in a less typical manner and needs more time an support in learning things, we say, “This one should start working at some point between age 16 and 18.” If parents of typical children are happy to see their kids stay in school until their mid twenties so that they can be qualified for a career that suits their abilities, why one earth shouldn’t parents of exceptional children want to see their kids have at least as much time to get to an optimal level of competence in a career that suits their abilities.

  4. aenea says:

    My daughter just started high school this year, and yesterday I got her “transition planning” package. I was actually fairly impressed with it- she has to have input, attend the meetings, I can have whichever advocates I want there, etc. etc. It’s all about using the high school years for planning for adulthood.
    While I think that it is a great idea, and a very good package, the fact is that we’re dealing with some issues with her right now that are likely going to take up most of our time and attention for the next year or so. I realize that “adulthood” for her is only 4 years away, and that time is going to go by much too quickly.

  5. farmwifetwo says:

    I’m currently looking for a battle to keep my youngest out of that self-contained-transitioning classroom in highschool.
    As I’ve told the public school why should I teach him the 3R’s for him to be put in a class where he’ll be taught to do his laundry. Is that not what I teach at home???
    If he lands in one of them, he’ll be coming home and homeschooled throughout highschool. After the legal battle.

  6. kyra says:

    the thing that resonates strongest with me is what you say about charlie still being a kid. i am so bothered by ‘educators’ pushing our kids to exhibit adult and adult-like behaviors NOW in their rush for them to be ‘prepared’ for the outside world. when the best preparation by far would be to support them and nourish them as authentically and appropriately as possible in these important kid years so they can have the strongest foundation possible.

  7. kyra says:

    the thing that resonates strongest with me is what you say about charlie still being a kid. i am so bothered by ‘educators’ pushing our kids to exhibit adult and adult-like behaviors NOW in their rush for them to be ‘prepared’ for the outside world. when the best preparation by far would be to support them and nourish them as authentically and appropriately as possible in these important kid years so they can have the strongest foundation possible.

  8. Rose says:

    Many autism “traits” are only part of the human condition. Communication is difficult in some ways for all of us. Thanks for writing about Charlies attempts. I find it fascinating. I know we didn’t take much for granted when Ben was younger. I also bore witness to the fascinating communications of kids in my PMD class the year I taught there. They were absolutely awesome. There was so little speech going on, but they got their points across and it was the strangest thing that you just “knew” what was on their minds without language. It was kind of off kilter, discombobulating, in a cool way, but other than being Ben’s mom, by far the richest gift I’ve ever been given in this life.
    About autism rates…when it gets down to 1 in 20, I guess I’ll come out of the ASD closet, just for fun. I’m anxiously awaiting the day!!! If there is money in it, it’ll get there. I’m not making light of more serious communication disorders, I’m making light of the Psychology/Medicine/Pharmacy complex. If there’s money, they’ll come.
    Well, anyhow, thanks!

  9. autismvox says:

    @VAB, my point exactly….more than a few of the students I saw graduate last May from my college did not seem to have the clearest idea of “what’s next”! (And many are still living at home.)
    @farmwifetwo, Jim and I keep talking about homeschool for Charlie. I kind of feel like we’ve finally acknowledged, we’ve taught him so much, we need to be as much in charge as possible! But the main “problem” is that we both need to work. — With your in your battle—

  10. autismvox says:

    @VAB, my point exactly….more than a few of the students I saw graduate last May from my college did not seem to have the clearest idea of “what’s next”! (And many are still living at home.)
    @farmwifetwo, Jim and I keep talking about homeschool for Charlie. I kind of feel like we’ve finally acknowledged, we’ve taught him so much, we need to be as much in charge as possible! But the main “problem” is that we both need to work. — With your in your battle—

  11. a parent says:

    Although I think it’s great that homeschooling works out for some, it’s really not a universal solution or even an option for everyone. Economically it doesn’t work for many families, although for us that’s not the issue. My huband is a stay at home dad, but he can’t homeschool our son. My son really needs to be with neurotypical kids. I don’t think he’s ever learned anything by being told or behavior modification type approaches. He sees others do something and eventually he wants to do it as well. Then he imitates/figures it out on his own. He needs modeling because eventually he wants to be like his peers. He has never wanted to do what I do or what my husband does. Inclusion is really our only option. So far we’ve gotten there gently, through diplomacy. Fighting and arguing got us nowhere. Lawyers help too (although they do kill the budget) 🙂

  12. Dwight F says:

    >> But if I kid is developing in a less typical manner and needs more time an support in learning things, we say, “This one should start working at some point between age 16 and 18.”
    I know from my oldest (LD but not ASC) that here in Texas he’ll be able to attend high school till he turs 22. In Alberta it was 21. Is this a federal thing or does it vary state to state?
    — — —
    I’m of a couple minds on the matter of focusing on what Charlie is going to do after school when he’s only chronologically 12, and at heart even younger still. Certainly handling the education of someone appropriate to their current mental age certainly makes a lot of sense. Truely you do not know where Charlie is going to be able to advance to in his skills, so making decisions this earlier doesn’t seem like a particularly good idea any more than picking an 8-year-old’s college major.
    However there are a few imperatives. From your lower vantage point 😉 have you noticed Charlie’s blossoming cookie-duster? He will soon be dealing with very adult issues forced on him by his body, which is completely unaware and/or uncaring about how prepared Charlie is to deal with it.
    So in my mind it isn’t the “job” and getting him to run a rice cooker to feed himself that is the pressing issue at this point.

  13. autismvox says:

    @Dwight F., In NJ it is 21 I think.
    Charlie can certainly microwave himself a meal (maybe not the most balanced one) and I think if I used the rice cooker more he’d pick that up to. Oh yes, the anatomical changes have been going on for the past year and Jim is in search of an electric shaver to do a good job on the moustache.
    @a parent, actually, if you had asked me a few months ago, I would have said “no, never” to homeschooling! Having Charlie in school in the community has seemed so very important to us. I guess that is why the collapse of his educational situation has seemed all the more troubling to us. It’s been slowly dawning on us that, hey, we do things with Charlie that some think takes weeks of instruction and pages of programming to accomplish—bike riding, grocery store trips.
    At this time, homeschooling is not a real option. We just don’t have anyone to stay at home full-time with Charlie, plus we both think that he really likes the routine of going somewhere for school and coming back home. But I am feeling more than a little trepidation about the upcoming change in schools for him, for sure.

  14. Morgan says:

    In the US under IDEA, it is the earlier of high school graduation or age 22.
    We too have wanted our son to be integrated into the full community (regular eduation classroom), but after observing his “mainstreaming” sessions in two of them, we defininately do not want to force him into a placement where he is not wanted. (I guess that’s enough said about that.)

  15. Morgan says:

    In the US under IDEA, it is the earlier of high school graduation or age 22.
    We too have wanted our son to be integrated into the full community (regular eduation classroom), but after observing his “mainstreaming” sessions in two of them, we defininately do not want to force him into a placement where he is not wanted. (I guess that’s enough said about that.)

  16. a parent says:

    @ Morgan –
    That’s the trick; finding a school that sees my son as an asset and a privilege. I think there’s a desire to be inclusive, but when it comes down to it, there’s a lot of learning to be done. I try to emphasize his positive and unique qualities – teaching himself to read, how well he sees patterns in math problems etc.
    When it comes down to it – my son and our family bring a lot to a school. We’re super supportive. Every lunch period, every day my husband is in there helping out. He goes on every field trip. We support every fundraiser. We attend every school meeting and function. My son is helping the teachers and the other kids learn about autism and generally about kids with neurological differences. One child in his class asked specifically if he would be coming back – I think the kids in his class have learned so much. When he has “loud vocalizations” they don’t laugh or play into it – they continue working and the have compassion.
    We’ll be trying to find a middle school next year. I’m nervous.

  17. a parent says:

    @ Morgan –
    That’s the trick; finding a school that sees my son as an asset and a privilege. I think there’s a desire to be inclusive, but when it comes down to it, there’s a lot of learning to be done. I try to emphasize his positive and unique qualities – teaching himself to read, how well he sees patterns in math problems etc.
    When it comes down to it – my son and our family bring a lot to a school. We’re super supportive. Every lunch period, every day my husband is in there helping out. He goes on every field trip. We support every fundraiser. We attend every school meeting and function. My son is helping the teachers and the other kids learn about autism and generally about kids with neurological differences. One child in his class asked specifically if he would be coming back – I think the kids in his class have learned so much. When he has “loud vocalizations” they don’t laugh or play into it – they continue working and the have compassion.
    We’ll be trying to find a middle school next year. I’m nervous.

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

  • What’s all this about?

%d bloggers like this: