“Just love him and enjoy him.  Let me worry about the rest.”

“Thank you for loving him and treating him like the beautiful blessing that he is. We’re blessed and lucky to have family that ‘gets it’!”

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

“Sometimes (my wife and I) need your help watching him so we can spend some time on ‘us’.”

“How we live for the ‘us’ moments, and have learned not to feel guilty about it. If only our loved ones could understand.”

“Please don’t look at him for what he is not, but rather for what he is.  There is not one day that goes by that he does not amaze me, I wish you could see and understand the same.”

“Recognize some of the exact same ‘quirks’ in yourself.”

“Thank you for loving him and recognizing his gifts. Understand that spending time with him is all he really needs.”

And in response to the question, “What’s the smartest thing anyone ever said to you about your autistic child?”:

“He is charming and intelligent beyond his years”; “He is a tutor in his math class”; “Quite frankly, he is refreshing compared to the rest of the kids (in middle school)”;”We love him here at school and we will miss him.”

Thanks as always to everybody over on the LinkedIn boards.

* * *

“Autism Parents’ Plea: Understand Kids’ Meltdowns,” from CNN.

IQ testing for children with autism, from about.com.

Post from: Autism Vox

Photo courtesy of crabchick (flickr.com)

Ordinarily I’d be harried and a bit peeved: I’d be running after Alex and Ned while Jeff slaved away at his job. But this year everything’s been turned upside down. Jeff is at home; I’m at work (at least this week). And while I’ve left in the mornings saying cheerily, “Have a good day!” and coming home to a meal I didn’t shop for or cook (which is nice), I miss my boys. I miss long trips to Ikea and Target (two ways we burn a lot of hours) or the zoo or the aquarium. I miss meal-planning. I even miss grocery-shopping.

On the other hand it’s been a nice break from autism. Alex has been asserting himself more than usual this week, and I haven’t had to cope. And on the other hand… I miss my boys. All three of them.

Post from: Autism Vox

Image world-war-2-airplane-model.com

The 1/48th Corsair fighter plane was going to be my comeback piece, the plastic model kit (”hobby kit,” now that I’m almost 50 and can afford the good kids) to prove that my eyes were as sharp and my hands as steady as when I was 16 and building the bargain kits.
I put it right up on top of the bookshelf, out of the way, with the now-empty boxes of the snap-together airplanes I did with the boys. “Airplane? Airplane?” Alex kept saying.

I had some computer work in the afternoon while Ned built a model on his own, and as I’m making dinner now that pretty took us to about 7:30, when the dishes were put away and I decided that Alex was owed some airplane time.

He didn’t help so much as watch: I felt a warmth to think that for Alex it enough just to be near me as we built a model airplane together. I do hope he wasn’t paying too much attention, after under my once-skilled fingers one piece went on crooked and then another went on slanted and then the tiny cockpit tinkled out of the half-finished fuselage and bounced across our floor.

Somewhere about the moment the Corsair’s canopy received a giant impression of my thumbprint in glue, it began to hit me that whatever skill I’d once had in this hobby had deterioriated. In the chair beside me, Alex drew his knees up inside his T shirt and sometimes watched me, sometimes stared off as I smeared glue along the inside of one wing and then the inside of another and mashed the two halves together. “Alex, wanna hold this together for a minute?”

He did. He slipped the propeller onto the front of the plane — right in front of the complete hash I’d made of the cowling assembly — and he took a tissue gently in his fingers to dab at the decals. I bent one of the “U.S. NAVY”s upon itself and I couldn’t line up the American stars on the wings (decals are my favorite part of building; they make the model).

I really meant to give this kit more love than this. Somewhere along this time, I decided to just do the landing gear and the missiles later, and just stick the damned wings on the damned plane — the part of the construction Alex seemed most keen on, anyway.

“There, Alex. Airplane. Let it dry a minute.”

He did. Then he took it over to the couch and methodically, wordlessly stripped off all the decals.

Post from: Autism Vox

CareGiver360 was created by Ken Ziel, a Colorado father whose son has a range of developmental and physical disabilities. Ziel was inspired to create CareGiver360 from his experiences raising a son with an array of special needs and trying to communicate all of those needs to multiple care providers.

“When providers left or new providers came in, I could see that the process of being brought up to speed and adapting to new procedures was just as hard on the caregivers as it was on me and (my son) Austin,” Ziel said.

Caregivers can also use the tool to streamline updates in care procedures, treatments and conditions.

CareGiver360 creates “care guides” tailored to the unique needs of those receiving long-term care, and streamlines and safeguards critical information to caregivers. Families are able to share a record of a loved one’s care, condition and personal preferences. New care providers can use the guide to become familiar with their care recipient.

The idea came one evening after Ziel and his wife left Austin with a caregiver to go see a movie. “The amount of time it took to go over all of Austin’s care instructions with the caregiver, and the anxiety it caused my wife and me, was incredible,” Ziel says.

***

The National Autism Association provides relationship-coaching tools at no charge to qualifying couples who have a child with autism.  Couples in need will receive a book and DVD presentation at no charge. To qualify, couples that have a child with autism should write to lori@nationalautism.org outlining their special circumstance. Qualifying couples will then receive both the book and DVD in the mail. Lifetime partners that have a child with autism also qualify. Counseling funds are also available through Family First. To apply for a $500 grant towards marriage counseling, couples can visit www.nationalautismassociation.org/familyfirst.php.

Post from: Autism Vox

On the one hand, that’s great. To me, summer is freedom, late mornings, no homework, no early bedtime. On the other: what’s Alex going to think when, in a couple of months, he returns to school, but to an entirely new building? He’ll be in summer school this year (we decided he didn’t get that much out of camp) but that always takes place in a different site from his September-through-June school. He’s used to that. Then he’ll have a week or so of recreation that he always enjoys. Then a week (actually slightly less than a week) of sleepaway camp that he doesn’t enjoy that much, but which is a very sweet week for us.

Macy's fireworks in Manhattan, 2008 (photo by Neotint, flickr.com)

Then possibly a family vacation to Cape Cod because school starts so late this year. Then middle school.

For now I’m feeling that toe-wriggling feeling of freedom and happiness that comes when you know next weekend is July 4, and there’s no school tomorrow.

Post from: Autism Vox

This question posted to the forums: “What’s the smartest thing anyone ever said to you about your autistic child?”

Said one respondent who’s 3-year-old daughter was diagnosed two years ago, “She is progessing well and although she still shows signs of autism on a daily basis, my wife and I sometimes question the early diagnoses.  With that said, someone once told us that whether it is autism or not, she still has some developemental issues which need to be addressed.  ‘Concentrate on those things as opposed to getting all hung up on the bigger autism diagnoses.’  This comment helped us do just that and feel as though it provided a bit more focuse on her treatment moving forward.”

“Once our now-17 year-old son was diagnosed with autism one of the doctors who saw him said that if he wanted to do something, he would do it,” said another. “The secret was in motivating him to want to do it. I never forgot that and it was so true. It may sound trite, however, I was coming from a place in my mind that said you can’t reach
people with autism (and I) learned that oh yes you can!”

Another was once at an autism conference with a fabulous keynote speaker.  “She was an ABA specialist and author and had worked with numerous kids over the years.  She said that every time we take our kids out in public we need to remember all the eyes that are watching us.  Not in a negative way, like we’d better be perfect in all we do or else.  But she said that sometimes it’s more important to consider the impact and impressions we leave on others than to work on every single behavior our kid is exhibiting.  As people see us, they see how we value our child; how we respect him
as an individual and his inherent worth to us and society.  As others see how we value him, that directly affects how they see people with autism and disabilities in general. I try to be more aware of my interactions with my son in public, not just for his benefit, but also to teach others around us. For example, if he’s noisy or having a hard time staying calm somewhere, I normally try to speak to him calmly to defuse things.  In public, I also try to narrate and
explain his feelings and the reasons for the behaviors, allowing others to overhear so they can understand.  Hopefully, the next time the other people near us see someone in a similar situation, they would remember and understand, say, that maybe he’s just tired today or he’s feeling a bit stressed.  It’s better than just seeing
someone that seems strange and maybe a bit scary and not knowing why.”

And the smartest thing said to this respondent: “‘So, now you know. Make the best of your knowledge.  It is a blessing if you treat it as such.’”

My own smart comment came from a doctor, said to Jill way back in the hospital when Alex was just a year old: “‘Life isn’t a matter of having a good hand. It’s a matter of playing well the cards you’re dealt.’”

***

LinkedIn’s groups are excellent places to pick up advice and contacts professional and otherwise. I’m a member of Autism Advocates, Linked to Autism, Autism Speaks, Parents With Patience, Autism Advocacy, Special Education Innovators, and Special Olympics, among others.

Post from: Autism Vox

Apparently, though, a lot of children with autism really like Thomas in part because the facial expressions are so easy to read.  (Here’s a gallery of the many faces of Thomas.)

Now an Australian profit has partnered with the smiley-faced engine to create a game whose mission is to help children on the spectrum recognize different facial expressions. The game is available to play on their website free of charge. We’ll see how Alex does and report back. I’m guessing he will be able to distinguish some emotions and perhaps not know what others mean.

Suddenly I find myself liking Thomas and that big, toy-dollar-grabbing company a whole lot more.

Post from: Autism Vox

No. Instead the teacher wanted to know if we’d gotten the message about dressing all the graduating kids in black and white for the ceremony? I had some memory of that but not a strong one — at this point in my parenthood only a drop of guilt can turn into a real past event in my head. Alex went to school in khakis and a T, and good luck getting him to wear anything else these days.

Teacher got him into a white baseball T. Alex was one of two kids in his special-needs class graduating, the rest of the graduates made up of kids from the typical school Alex’s classroom sits in. The kids were in summer dresses, little suits, some ties, all of their shoulders draped in the school’s purple grad banner. Most of the parents were dressed to match, minus the banners, of course. I showed up in cargo shorts and a short-sleeve button-down shirt and Chuck Taylors. Why hadn’t I foreseen this moment? For a moment I told myself that being the parent of a kid like Alex should give me a built-in excuse, but that sounded feeble the instant I said it to myself.

I hadn’t, and the moment soon took me in the throat. There were all the kids and all the awards, all the balloons and all the digitial camera phones and all the applause – no great amount of the latter but certainly no small amount of it, either, for Alex and his autistic classmate, even as Alex kept escaping on stage to see what was behind the drawn curtain. In his white baseball T and khakis. Once he got a laugh. Halfway through the ceremony, I saw he’d shed his banner. He won an award for reading, along with four typically-developing students.

About that same time, it hit me that this was it. Jill has already talked about the kindness of this place, a kindness I confess I’ve taken for granted for six years. It hit me that maybe this was the end of this kind of kindness, for a little while, and I just didn’t know it yet.

Leaving too was the assistant principal, off to assume the big chair at a special-needs school in Queens. She was a unit teacher when we met her a few years ago, rising soon to assistant principal, and this fall, when Alex gets off the bus in a strange place and it hits him that “school” now means something dramatically different, she will be far away. I’ll miss her and miss them all in the way I didn’t realize until this ceremony, when it feels like I graduated in a way, too.

***

President Obama announces new initiatives to help Americans with disabilities.

Post from: Autism Vox

Alex’s school, a NYC public special ed school, has a bunch of locations. They’re schools-within-schools: a few classrooms in a general ed school. In this case, an elementary school in Washington Heights whose only drawback is how far it is from our apartment.

Unlike many other schools, the principal of the general ed school — Tracy Walsh — is unusually welcoming to the special ed students. Near the end of kindergarten, Alex came home with a graduation day t-shirt from PS 48. What’s this? I thought. Alex isn’t graduating. Alex doesn’t go to PS 48. On the back of the t-shirt were all the names of the graduating students. And Alex was one of them.

Six years later, Alex came home with another graduating t-shirt. Alex is graduating, we realized. And there was his name.

On the way to school we got a phone call from Alex’s teacher asking if we were bringing black pants for Alex. Apparently a letter was sent home (we never got it) asking the graduating students to wear black pants and white shirts. Even if we’d gotten it, I think it would have been near impossible to get Alex into black pants: he only wears khaki.

When we got there, June (his teacher) had somehow gotten him to wear an unfamiliar white t-shirt AND he was sporting a blue ribbon sash. Through the crowds of parents we could see Alex sitting with his teacher. We read the program: Alex would receive two awards, one for reading and a special UFT (United Federation of Teachers) medal of achievement.

When he went up to the stage, he was always accompanied by his teacher or an aide. Good thing, because he found the red curtains on the stage irresistible. People laughed, but not unkindly. They applauded when his name was read. Alex’s teacher read names for some of the awards, and the assistant principal of his school, who is leaving to become a principal, was honored. And I think this is what makes me so weepy. It was no surprise that Alex would be somewhat wander-y or would need someone to help him on and off the stage. But that his classmates and teachers and administrators would be so much a part of this big, glorious celebration was unexpected (I know, I should guessed from those t-shirts).

It’s not like this in a lot of schools. General ed principals can be uncomfortable with our kids — and in some cases downright unwelcoming. I’m sad that Alex is leaving this beautiful school that was so accepting of how different he is. I know the rest of the world doesn’t have the same serene acceptance of people who are different. But really. Every school should be like PS 48. Every principal, every leader should conduct with the grace and kindness of Tracy Walsh.

We bought flowers for Tracy Walsh yesterday morning,  who shrugged off all thanks and said, “They’re all our kids.”

Post from: Autism Vox

Alex had been squatting on the floor last evening, flipping through a big hardcover about knitting. Fine, except he hadn’t picked up when asked (with him it generally takes about three requests, which to be fair is probably about what you’d have to fire at most kids), and I had tripped over this hardcover one too many times. So I tried to cram it back onto the bookshelf just as Jill grabbed her keys and we got ready to head out. Except there was another book jammed on top of the other books on the shelf, and I had to take it out to get the big knitting hardcover to fit.

Image: paloaltosoftware, flickr.com

“Jeff, what are you doing?”

“Trying to put this book back!”

“Stop snapping at me viciously!”

How would you like me to snap at you?

Snap we do, and often the root not that Jill and I don’t like each other at that moment, but that we’ve somehow crashed over something Alex did because he’s autistic. Books on the floor, something in the trash, some favor undone or something put somewhere it would be only be put if you didn’t care what your spouse thought or you were trying to put out other fires at the time.

“I did it/didn’t do it,” I told Jill once, “not because I don’t care what you think, but because my autistic son was doing something at the time that I had to pay attention to.” What she and I fight, without break, is the inclination to snap at the person who will give us some response: me or Jill, and not Alex. Alex who will react eventually, but not as fast as the spouse will.

Jill and I had a row like that the other night. I did/didn’t do something, and she snapped, thinking I just didn’t care. “Don’t yell at me for something Alex was responsible for,” I said. “We can’t make it if you do that.”

It’s three days later now. For the life of me, I can’t remember now exactly what the problem was.

***

The Autistic Family Life Cycle: Family Stress and Divorce, from a past ASA conference.

Autistic Children and the Strain on the Marriage.

Post from: Autism Vox