I asked a forum, “If you could say one thing to your relatives about your autistic child, what would it be?”

“Do not be afraid,” said one respondent. “Do not feel sorry for us or our child. He is the greatest gift/blessing we could ever have in our lives. We are happy we were chosen to care for this person.”

Photo by Me-Liss-A (flickr.com)

“Have empathy,” said another. ”Please help!” said a third. “It isn’t just hype,” said another.
“You got one hell of a nerve complaining about your life in my presence!” was another reply. ”You don’t know ‘tired,’  you don’t know ’stress,’ you don’t know heartache, you don’t know ‘my house is such a mess,’ you don’t know ‘I need a holiday’ like I do…. and what you do know of it will be over when your kids turn 18.  Ask me on another day and hopefully that chip on my shoulder won’t be so heavy.  Not fair, I know.  Everything is relative.”

One respondent with a spouse and child with Asperger’s said, “Aspies don’t handle stress or the typical ups and downs of family life easily, and it can be really tough at times. Understand how difficult (as well as rewarding) life can be for the NT spouse and show some understanding, compassion and acceptance.” And to that NT spouse’s  mother-in-law: “Please stop blaming me and harping on me when my spouse wants to sit in the corner and play video games all evening instead of socializing at family gatherings. No, I didn’t do anything to upset them, and no, we aren’t fighting. They just feel uncomfortable around groups of people. Let them do their own thing instead of forcing them to be what you want them to be. Stop pretending that they’re normal and acting as if I’ve somehow caused them to be this way through some inadequacy of my own.”

I think in my next life I might be the relative of an autistic child of someone else’s, if there’s any balance in the universe. What would I like to hear? How about, “Thank you for all of your support!” which came from one respondent.

And to head off Aunt Julie’s certain question — “So what would you like to say  to YOUR relatives?” I would say, “Thank you for chasing him.” Nah, that’s no good. I’d say, “Thanks for the week of babysitting! We had a great time in London!!”

An expecting mother wrote this yesterday on BabyCenter:

…..more than anything else that could go wrong with this pregnancy, I am more worried about my child having autism than anything else in the world.

These causes, many reported by the popular media, and without valid evidence to back them up, are listed:

- Vaccines, especially with thermisol, the kid getting them all at once (flu shot, MMR)

- Smelling cleaning products while pregnant (Lysol, etc.)

- Advanced maternal age

- Having autism in your family

- Heat, hot baths, hot showers

- Worrying and stressing

- Rainy climates

The UC M.I.N.D. Institute’s MARBLES (rs of Autism Risk in Babies—Learning Early Signs) seems to be referred to, though I don’t think the “smelling” of cleaning products during pregnancy is specifically mentioned. The study linking rainy climates to autism rates is noted—a study about which there’s doubt as to “whether the paper deserved to be published and reported,” as stated in the Times Online. Older parents, fathers as well as mothers, have been linked to autism, and there’s a number of studies for genetics, for autism being “in the family.”

But “worrying” and “stressing” and hot showers and baths?

Will we next be hearing about whether worrying about autism be linked to causing autism?

Yes, the numerous claims that vaccines can be linked to autism have been gnawing away at the fears of parents-to-be even though vaccinations do not cause autism.

Hope that the expecting mother on BabyCenter might, instead of fearing autism, learn about it, learn that there’s a lot that you can do to help a child, and know that life raising an autistic child—-life raising a child—-isn’t what the popular media makes it out to be. It may be a different parenting adventure than one might think—for us, for sure, it’s been full of much that’s unexpected, and more goodness and love than I could ever have bargained for.

I read about plans for a new preschool for autistic children (in Brownsville, Texas, which—one upon a long while ago—-I briefly visited). An occupational therapist is hoping to start the school, which sounds as if it’ll have some emphasis on sensory sensitivities. I read about a new book on understanding autism written by a written by a 13-year-old whose best friend has a younger autistic brother. I think back ten years ago, to the winter of 1998.

That December was the first time I didn’t make it home for Christmas in California since I went to college back east in 1986. Charlie had had a number of ear infections and colds and the like throughout September of 1998 and, with his latest raging infection, the pediatrician told us we couldn’t take him on an airplane for the holidays. Charlie wouldn’t, we were told, be able to stand the pressure on his inner ears—-so Jim and Charlie and I celebrated Christmas of 1998 at the Rio Grande in St. Paul.

We did make it out to California to see my relatives after Charlie’s ears had cleared up, but all was uneasiness. It was becoming more and more apparent that it wasn’t just because of all those ear infections that Charlie was not talking and kept so much to himself in his daycare room. The image that is fixed in my head from that trip is of a very small Charlie standing between the couch in my parents’ study and the coffee table. My parents had given him a V-tech toy laptop. We turned it on for Charlie and he stared in the direction of the screen, while cheerful recorded voices said “press enter! count how many squares.” And Charlie just stood there.

Charlie was diagnosed with autism a few months later in 1999. And I still so often feel that twinge. What if there had been X program when he was just diagnosed; how much might it have helped him? What if we’d been able to move immediately from St. Paul back to New Jersey, what might that have meant?

And then I recall the conversation I had a few months ago with another mother of an autistic son. She is Lila Howard and is 84 years old, and still the primary caregiver for her son, who’s now in his 50s. She noted that we parents today have it “served up on a silver platter.” She was exceedingly glad about this, and her words gave me a wake-up. How many therapies, programs, services has she learned about over the years, and thought about as helpful to her son? How many more will she hear about still—how many more will I?

Now stop right there, I say to myself. There’ll always be “some new thing you’ve got to try” (one hears this all the time, as it is). There’ll always be some fabulous new remedy, or treatment protocol, or super-duper guru therapist. There’ll always be some new formula for hope in a jar.

Or rather, as I think of it—-even over the past two days when Charlie, far away from his usual routine, his usual order, here in California for Christmas, has seem unmoored and hyper-anxious, and trying so deeply hard to keep it together, and not able to at all, at times—-you just have to keep hoping.

And not the least because I want Charlie to know that we always, always believe in him, and that every day we spend with him is the best present there can be, this Christmas and for every Christmas to come.

Things small and familiar were the gifts that Charlie most liked: A pale blue Mugen Pop Pop, a new copy of a DVD he already has (and that’s gotten so scratched up and smudged that it skips and gets stuck), a case for his Leapster (which we should have gotten a while ago, as Charlie’s dropped his a couple of times). We’d be happy to get him some more elaborate gifts, and have over the years. Iused to spend quite a bit of time choosing toys and then even more time teaching Charlie to play with them (some of the toys are still in closets in our house and in my parents’, shiny and wrapped in plastic to protect them from the dust).

Charlie pretty much seems to lack consumer consciousness. He likes what he likes.

And so, while experiencing the sort of quavering feeling many (most…) of us have been as more words like “dismal” and “downturn” are used along with “economic crisis” and “home sales” and “mortgages” and “banks”—-what will this mean for Charlie’s public school program? he’s quite a ways from looking for a job but won’t it be even harder to find employment for a disabled worker in a challenging economic climate”?—-we’ve also felt that there’s not going to be some totally drastic change in our everyday way of life.

Ever since Charlie was diagnosed, we’ve scrambled to pay for the things he needs, and managed. Corners have been cut (and will be) ,and we’re both feeling very fortunate to have full-time employment. With Charlie’s needs, we’ve long known that some things are just out of the question, and we always have an eye on his future. While we very much hope and intend that Charlie will be able to have a job, it’s highly likely that it’ll be far from high-paying. Certainly, Jim and I are both hoping we can work as long as we can.

Caryn Sullivan writes about a generation of kids accustomed to having more now having to adjust to having less. It’s “stuff” —-electronic iStuff and the like—-that she’s referring to, while she also notes that one of her children, who’s autistic and living a “cloistered lifestyle at a remote, old-fashioned school,” gave her a list of 24 items that he’d like. As Sullivan writes in yesterday’s St. Paul Pioneer Press, she’s readying herself to “try to explain the financial facts of life without bursting his bubble this [Christmas] morning.”

I’d like to know how this went. Having been living with what people think is less, but I’ve learned is more —a son who’s disabled, who’s autistic—I think it’s possible to keep managing on less and little, and still come out feeling like you’ve got much, much more than you’d have ever bargained for.

Something Charlie already has in book/video/DVD form………. It was the first present he opened and the one he kept by him when he fell asleep on the couch. (Any guesses?)

The American Council on Science and Health (ACSH) has issued a list of Top 10 Unfounded Health Scares of 2008 and take a wild guess about one item, specifically #8……. it involves autism and a word that starts with a ……………………..v.

Stumped?

Hint: Something involving “greening.”

Hint: Something involving a certain former MTV starlet.

Yeah, it’s something that gets brought up too much in discussions about autism, namely, the hypothesis, unsupported by the scientific evidence, that vaccines can be linked to autism.

Here’s the ACSH’s bottom line:

Not only are childhood vaccines safe, they are necessary to protect both individual children and the larger population from dangerous diseases. Despite the ever-present nature of this scare, parents should trust their children’s pediatricians and comply with the recommendation that every child be fully vaccinated by the age of two.

And how about a resolution in the new year to start moving on from this issue which has captivated so much of the attention and energy in discussions about autism?

The Florida legislature has declared the first half of October as Disability History and Awareness Weeks, today’s West Volusia Beacon notes. Indeed, the legislature is said to be “trying to change the negative image, perception and treatment of people with disabilities.” The article highlights programs for disabled students throughout the county, such as Deltona High School’s Multi-VE program.

VE stands for varying exceptionalities. Multi-VE students’ disabilities and challenges include hearing or language impairments, mental handicaps, emotional and behavioral disorders, multiple physical handicaps and disorders all across the autism spectrum.

Located in Building Z on the 92-acre campus, Deltona High School’s Multi-VE program serves more than 50 students, ages 14 through 21. They attend classes to learn to function independently and to acquire skills to help them gain employment after graduation.

At Deltona High School, “VE” really means “victories everywhere,” because students with disabilities are showing they can be successful in and out of the classroom — that they have abilities!

The classrooms and programs recall those in my son’s school district here in New Jersey—-but we could all use more of the “VE” attitude, wherever we are.

It’s said to be something that parents of children with developmental disabilities experience. An article by Amy Basking and Heather Fawcett coins the terms “Empty Nest Envy,” as noted in today’s Orangeville Banner:

While most parents can look forward to children spreading their own wings, there are some who look to the future with trepidation and uncertainty. Not just for themselves, but more importantly for their adult children who have developmental disabilities. These parents, when their children graduate from high school, suddenly find themselves supporting their adult child full-time.

The reality for these parents can be daunting. In the article, the authors talk about how for one family their 28-year-old son remains with them. Despite thinking that he would be living on his own with supports at this age, the reality is that he will probably remain with them “until one of us dies or we’re in crisis.” This couple has little time alone and never the opportunity to holiday away together.

Another mom, who is 60 with a 30-year-old son with autism, is quoted as saying, “When the kids graduate there is nothing but endless applications for funding. I can’t afford to retire. I have no savings. I’ll retire when I drop dead.”

The just-this-week published Easter Seals Living with Autism study reports that more than 80 percent of adults with autism between the ages of 19 and 30 are still living at home and I do wonder what wil happen for Charlie. Sure I think a lot about, advocate for, how to provide more housing for disabled adults, more jobs, more and more and more: But how to turn needs, advocacy, testimony, research, into realities? Into an actual place for Charlie to live when he’s older, with the supports that he’ll need?

Let’s say, I don’t want to have develop empty next envy. But it may well be inevitable.

The Women’s Rights blog over at Change.org has a post about the Top 10 Moments of Feminism in 2008. The selection of Sarah Palin, Governor of Alaska, as Senator John McCain’s running mate sparked (I guess that’s an understatement) lots of discussion in general, and certainly in the autism and disability community, and in particular regarding Palin’s baby son Trig, who has Down Syndrome. Would you consider the choice of Sarah Palin, special needs mother, as a Top 10 Moment in the annals of special needs families in 2008?

So yesterday I wrote “what comes around, comes around.” Siliconmom commented about this sentence, the last one in the post:

Is that one of the stages of being an autistic parent - that at some point you realize and accept that life is what it is?

For me, I would say, yes, very much, and that, too, hope starts with acceptance.

Charlie was around 5 years old when I let go of feeling I had to save him from, and fight against, and do the warrior mom thing. I’m not saying I don’t have moments when a shadow of the old “fightin’ spirit” passes through me (pre-IEP meeting, for instance, or when you get The Stare-’n'-Shakes-Head Combo in the supermarket). Being Charlie’s mom is not about doing everything I can to “take the autism out of him,” but rather of loving him as he is, for who is, no matter what.

Just over a year ago I wrote down some thoughts on recovery while grocery shopping. Kev at Left Brain/Right Brain blogged recently about some claims on Age of Autism about “‘‘hundreds of case reports’ of recovered children’”; these children’s “recoveries” was said to have occurred thanks to doctors following the Defeat Autism Now! protocol.

I have a xerox of the original DAN! protocol in a box of files, a rather dusty box of files, as Charlie was 2 1/2 years old when we were “doing our research” about those sorts of biomedical treatments. (In fact, I was paging through that xerox of the original DAN! protocol—we’d given the original booklet to Charlie’s pediatrician in Minnesota, where we were living when Charlie was diagnosed—when I was seen sitting on the porch of our house on this show.) While numerous other diets, supplements, treatment practices have been suggested as methods to “defeat autism” since I sent away for the DAN! protocol in 1999, the motivation of parents today in using such treatments is, I would think, unchanged. We all just really, really, really want to help our children do their best in this life, especially in their life when we are not around to help them, that they can. Biomedical treatments hold out immediate, visible results; education and teaching plod along and produce small gains that can get lost in the data collection and then it’s back to square one as programs get put on hold.

And who doesn’t want to see the progress, to get it quick, not to have to see their child go to “more special ed” instead of “kindergarten without an aide”?

I mean, we do really rely too much on the microwave oven.

Middle school, self-contained classroom, all special ed and one-on-one with the teacher:student ratio: That’s not the scenario that parents get promised when they sign the contract for intensive in-home therapy for a just-diagnosed 2-year-old.

it is the scenario for Charlie, my middle school, self-contained classroom, all special ed, son. I started the week with a pained reflection on Charlie’s middle school blues. The week (and the school year) are not over but, after a Tuesday home visit and long conversation with Charlie’s teacher, the blue is looking more like blue sky blue. Why and how, I’ll go into more detail later—suffice it to say, figuring out Charlie’s learning style take trial and error, and time. Teaching Charlie requires adapting one’s teaching style to him and his way of learning.

What comes around, comes around.

Fitting, then, to end this post about recovery by noting a few more thoughts about the topic, also while in the grocery store. For a variety of reasons that involved a lot of hot- showering in a relatively short period of time, Charlie and I ended up at the grocery store as it was nearing 7.30pm, rather late. Charlie got a shopping basket and went to look for sushi and into the bakery section, and then I saw that he had stopped, and was leaning forward to examine a display of DVDs, one by one.

That is to examine the purple cases—purple, the New York Times informs us, being the new pink—of certain DVDs with great care. You guessed it: They were Barney DVDs. Charlie went through each one, and walked around the case, and ignored my requests to look for otheritems. He circled round to the front and sifted through the Pilates DVDs, just in case there was some hidden DVD treasure. And when he’d looked his full, walking away backwards, eyes still locked on those purple plastic cases—-he picked up the shopping basket and we continued our tour of the grocery store.

No fuss, no muss, just peaceful Wednesday evening shopping, Mom and Charlie-style, with a bit of Barney to boot.

Recovery from autism is something we shouldn’t be worrying about. My son is autistic and the good times that we have — no way can we let thoughts about irrealities distract us from the goodness of every day together.