Can I Sit With You Too: Deadline in One Week

If you want your wonderful, fabulous story about your social experience in elementary or middle school to be included in the Can I Sit With You? project's second print collection, you'll need to get it to us by August 31st. ciswysubmissions@at@gmail.com.

Though we have more than enough material for the second book, we want to include as many voices and perspectives as possible. Please make good on your good intentions, and send your story in by this Sunday!

Please note that while Jennyalice and I are nice people, that deadline is a rock wall. Don't run into it headfirst.

Technorati Tags: Can I Sit With You, Can I Sit With You?

To Any Parent Who Thinks Their Child Might Have Autism

I hope you and your family are doing well despite your worries. Please know that even if your child does have autism, you are all going to be okay. The resources for and awareness of autism is general is much greater than it was in the past. You will not be alone. You should not have to make any decisions alone.

If you feel more comfortable getting an initial screening from your pediatrician, go ahead. But please know that many pediatricians have little autism experience. My son's first pediatrician said that my boy couldn't possibly have autism because of how responsive and loving he was (and still is). It is better to go with an autism expert, though your pediatrician can still make referrals for you.

The first thing you should do is call your local regional center to get an intake appointment. You should not need your doctor's referral to call them up and get into the system; you should be able to do this yourself. They will have a social worker call you to set up appointments, which may include a series of home visits and should include a diagnostic exam from one of their developmental pediatricians. Here is a directory of California regional centers; the one you go to depends on where you live:

http://www.dds.ca.gov/RC/RCList.cfm

The regional centers are very frank and straightforward; they are not going to do much hand-holding but they will get you started. They will also fund various resources for your child and your family, including classes and therapies, camps, respite care, etc. (They may not tell you about the extent of their coverage unless you ask.) Please know that their therapeutic and educational responsibilities for your child end at age three, at which time coverage for those needs will transition to your local school district.

For a comprehensive autism intake and screening, I would call Stanford's autism clinic:

http://childpsychiatry.stanford.edu/clinical/autism.html

UCSF and the UC Davis MIND Institute also have clinics. My son has had evaluations at all three places, and while they all provide basically the same services (comprehensive autism screening and recommendations for next steps), UCSF's staff needs work on their bedside manner, and the MIND Institute can be very difficult to get into unless you volunteer your child for one of their research studies (but then you can get all sorts of free screenings and may even get a small stipend). Kaiser also has a clinic in San Jose.

It may take a long time to get an appointment at an autism clinic, and the appointment may end up being months away, but make it anyhow. The time between now and that day will go by faster than you think.

You should set up the following additional screenings/appointments ASAP. Ask your peditrician for these referrals or orders:

• Genetic workup for the most common conditions that emulate or can include autism, e.g., Fragile X
• Pediatric neurology exam

In the meantime and for things you can actually start doing right now, I would order Catherine Maurice's book, Behavioral Intervention for Young Children With Autism. It describes the basics of Applied Behavioral Analysis (ABA), which is a method of motivating your child to learn skills step-by-step using a structured reward system that is then faded away. (Think of the sticker system many parents use to encourage any child's potty training. Most ten-year-olds no longer require a sticker to use the toilet successfully.) Rewards can be food, tokens, praise, music -- anything that speaks to your child.

Ideally, the regional center or eventually school district should pay for an in-home ABA program and therapists to run it, but between now and then you can start incorporating ABA-type activities formally or informally into your child's day.

Autism Speaks is a national organization that provides free general information about the early signs of autism, and family resources:

http://www.autismspeaks.org/whatisit/learnsigns.php

Autism Speaks also has a "100 Days" kit to help families through the "critical 100 days following an autism diagnosis." I have not used this resource, nor do I have any feedback on it, but it seems like another potentially helpful (and free) support option that is immediately available, which is what you need right now:

http://www.autismspeaks.org/community/family_services/100_day_kit.php

Please note that Autism Speaks is controversial for their sometimes negative focus on autism as a burdensome condition. Though I wish they were more inclusive of autistic voices and demonized autism less, their outreach and support efforts are still valid and useful. Keep informed:

http://www.squidoo.com/autistics-speak-for-themselves

I am also particularly fond of the Autism Games site, for ideas and activities about engaging autistic children:

http://autismgames.googlepages.com/

For a book about parenting an autistic child, I recommend Susan Senator's Making Peace With Autism.

For a fantastic read about autism and being autistic, I recommend Temple Grandin's Thinking in Pictures.

Even if your child ends up with an autism diagnosis, no one can predict what that means for him or her. It is different for each child. That is why autism is a "spectrum disorder."

Please be kind to yourselves. Don't listen to anyone who offers you miracle cures or recoveries, or read books about such things. They will only sidetrack you into thinking about the child you *could* have, rather than the child right in front of you. Focus on your child, on helping her or him gain skills, on fighting for resources, on loving your child, and on parenting your child to the best of your ability.

You are going to be okay. You child is going to be okay.

Contact me whenever you need to.

-SR

Please note that the regional center and clinic resources are specific to California and The San Francisco Bay Area.

Technorati Tags: ABA therapy, autism, autism awareness, autism blog, autism games, autism research

Mostly Successes

Yesterday's trip to the Monterey Bay Aquarium was a triumph, by most measures. There were no toileting incidents from anyone, minor or major, for the first time since my two youngest ventured into Underwear Land. Leelo loves the MBAQ so much that the usual crowd-spurred sensory overloads take more time to register, and we were able to visit all the parts he likes: Splash Zone with its Nemo fishies and nubbly coral reef tactile walls throughout, the Open Ocean tank where he could lie on his back and look up between the giant tunas and sharks and into space, the back outside decks where he could gaze on the waves and kelp floats and think and think, and of course the wave tunnel.

(Side note: Our Aquarium foray made me realize once again that my neon hair is just plain useful. Our friends were able to find me and my kids even in the dimly lit jellyfish/open ocean area. I wish this lid didn't take effort to maintain (note that I did not write "a lot of effort"). At the moment it is rooty and partially washed out but the little kids still looooove me.)

We arrived at the Aquarium relatively early, which was good for fewer people, but not so early that the three kids we were with could deal with the aquarium cafeteria. Hello Aquarium Staff: Your cafeteria has delicious food but for autism and indeed most families is completely impractical unless there are no lines.

We took off to, um, Bubba Gump next door, instead. And had mediocre food but found Leelo this awesome shirt:



He also got another shirt, a penguin tee from Splash Zone because his original shirt got wet and he flipped and I was going to buy him a new MBAQ shirt anyhow as he outgrew his last shirt and we gave it to Moomin. Leelo loves his new penguin shirt. When we got home he spilled smoothie on it and was so upset that he demanded, "PUT SOAP ON IT!" Which I am guessing means wash off the stain. He has never said anything like that before, so yay.

A good day overall, a successful outing overall. The ride home devolved into barely-contained hell for a period, but that is standard for traveling with two kids who have pronounced sensory issues and a three-year-old gadfly who knows exactly how to pull their sensory triggers. Leelo only tried to kick/hit Mali a few times, and then only when his patience was wearing thin.

Like my patience with that little sister, who decided two weeks ago that she is no longer potty-trained. She might go #1 if you catch her in time and put her on the pot, but otherwise has decided that her bodily functions are no longer her responsibility. I suspect that she got freaked out on the boat, as the bow thrusters that help the boat negotiate sideways movements such as getting into a specific spot on a dock were right outside our toilet, and they were LOUD and SCARY and seemed to go off right when her little bottom was most vulnerable. Also ghosts live in most toilets, did you know that?

I'm hoping this phase passes quickly, because I am so done with poop. Leelo had one bad day when we got back from Canada but has otherwise been almost perfect. I have no need for anyone else to take up the stench and mess slack.

Good thing Mali is cute. Witness:

Extraordinary powers or not, all who wander into Mali's castle invite peril and get the entangly spider treatment. I'm guessing Iron Man is going to get eaten first, and Tai Long will be saved for a midnight snack. (Those "cords" are poached from Iz's potholder weaving kit; to me this is a much better use of materials.)



Iz is still down south, in Anaheim Hills and Disneyland and San Diego with my mom, poor girl. Here she is engaging said mom about their SoCal agenda, on the way back from the boat. My girl is sitting in a seven-seat Beaver floatplane a mere 3,000 feet over the picturesque Gulf Islands. Me at her age, I'd have had my nose pressed against the glass sucking up the scenery and wouldn't have looked up once. But this is her third trip to these parts via these vectors ; the deal, to her, it is not big. I wonder at her overall context, sometimes.



But I am not taking her shopping for new school clothes this year. She has enough clothes, already. When she grows out of them, then she gets the new ones. Jennyalice implied that I am denying Iz a rite of passage. While I agree with her on the "here, you have $X and need to figure it out yourself" budget-learning aspects, I think Iz requires nothing else to be given to her right now.

It's me and Seymour and the two kids today. No nothing else, no nobody else scheduled today. Once Seymour and Mali wake up (it's their morning to sleep in), we'll hit the cafe and then Samuel P Taylor State Park. Seymour explored the park for a Quest segment, and says it is cool and green and has lot of converted-rail trails. Perfect for families. Perfect for families like ours.

Another day, another potentially successful family outing. Let's hope.

Technorati Tags: autism, autism blog, autism siblings, gratitude, outing, success

Aquariuming

Mali and I have been home for four days now. (Iz went straight from the Pacific Northwest to San Diego with my mom, who also came on our fabulous boating trip).

Leelo was not happy to have his wee sister back home. Apparently he thought she was gone for good. So I am spending this week while they are still both out of school searching for distractions. Hiking in Butano with Jennyalice and Lucy was good, very good. All three kids blazed the Little Butano Creek trail there and back again, in record time, with no whining, and with only one banana slug casualty. The forest was, in Jennyalice's words, "primeval." Cool, soothing, green. We were all in a good space.

Which might be why we didn't really notice how tired those kids were. Had we not been so drunk with success, we might not have taken three tired hungry overactive children to a crowded family/tourist restaurant where we had to wait a lot longer than we were told, and staffed by pinched-faced and overstressed waitstaff who came over to ask us, "Are these [big gestures to two tables of tourists in corners] people going to be able to enjoy their meals? Because that's what we're concerned about. That these people will be able to enjoy their meals." Jennyalice and I looked at each other, I got shocked tears in my eyes, and said, "we're leaving," and we stood up and left, dragging one really unhappy autistic boy who had been promised bread and two preschoolers who sobbed and howled, "But we're soooooo HUNGRY!" through the crowded restaurant.

In hindsight I should have told her that we just needed bread. But I was too surprised by the waiter's calling us out. Now she'll never know that Jennyalice and I always, always order too much food and always, always overtip.

We're going back though. Seymour and I have been taking the kids to said restaurant for years, and it is one of five or so restaurants in which Leelo usually has a good time. I'm not letting one callous and compassion-challenged waiter piss in that pot.

Anyhow, the restaurant debacle is off my chest and off the point. We want to set Leelo up for success in outings with Mali, so this morning I'm taking them to the Monterey Bay Aquarium with Ep and Merlin. I am hoping that an early morning late August visit will mean fewer crowds, because while Leelo loves the Aquarium, he can't take it when we have to elbow our way past the other visitors. We tried going right after Christmas and had to leave early, even though we had Therapist A with us that time. Today it will be just us five, and hopefully fewer crowds. I want to see both Leelo and Mali have happy times "together." That is all I care about at the moment.

Technorati Tags: autism, autism blog

Request for Information: Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders

via Liz Ditz, who wrote: Please feel free to forward this to any person you think would be interested.

More information at: http://neurodiversity.com/weblog/article/171/

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On September 15, 2008, members of the Services Subcommittee will meet to review all public comments submitted to date, and will present these comments at the next meeting of the full Interagency Autism Coordinating Committee, which is scheduled for November 21, 2008. Members of the public are invited to participate in the September 15 Services Subcommittee meeting by conference call; for more information, please consult the public notice posted on the U.S. Government Printing Office website.

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Request for Information: Priorities for the Interagency Autism Coordinating Committee Services Subcommittee for Autism Spectrum Disorders
Notice Number: NOT-MH-08-016
Key Dates:

Release Date: August 11, 2008
Response Date: September 19, 2008
Issued by: National Institute of Mental Health (NIMH)
Description

The purpose of this Request for Information (RFI) is to seek input from Autism Spectrum Disorders (ASD) stakeholders including individuals with ASD and their families, autism advocates, State officials, scientists, health professionals, therapists, educators, and the public at large about what they consider to be high-priority issues and concerns surrounding services and supports for children, youth, and adults with ASD.
Background

The Combating Autism Act of 2006 (Public Law 109-416) re-established the Interagency Autism Coordinating Committee (IACC) and, among other duties, requires that the IACC develop a strategic plan for ASD research. The IACC includes both members who are active in the area of ASD research funding, services, or advocacy, including several members who have family members with ASD, and one member with ASD. In March of 2008 the IACC established the Services Subcommittee, to assess and improve services and supports for people with ASD and their families. A previous IACC developed an ASD Services Roadmap, which is available on the IACC Website above. This RFI is a next step to obtain updated information about present and future services and supports to individuals with ASD, and their families across the lifespan.
Information Requested

The IACC is interested in receiving your input and ideas about high-priority questions and issues surrounding services and supports to people with ASD of all ages, and specific research initiatives on ASD services and supports. For example, information is sought in the following areas that impact services and supports across the lifespan: education services, health and medical services (including dental), housing, transitions, employment, community inclusion, safety, older adults, finances, guardianship, and estate planning.
Responses

Please send responses to iaccservices@mail.nih.gov no later than September 19, 2008. Please limit your response to one page and mark with this RFI identifier, NOT-MH-08-016, in the subject line. The responses received through this RFI will be collated, summarized, and provided to the IACC Services Subcommittee and the public. Any proprietary information should be so marked. The collected information will be analyzed and may appear in reports. Although the IACC Services Subcommittee will try to protect against the release of identifying information there is no guarantee of confidentiality.

A summary of the results obtained from the responses to this RFI will be available to the public on the IACC Website.
Inquiries

Inquiries regarding this notice may be directed to:

Azik Schwechter, Ph.D.
Office of Autism Research Coordination
National Institute of Mental Health
6001 Executive Boulevard, Room 8203, MSC 9669
Bethesda, MD 20892-9669
Telephone: (301) 443-7613
FAX: (301) 480-4415
Email: schwechtera@mailnih.gov

Technorati Tags: autism, autism advocacy, autism awareness, autism research, Combating Autism Act, NIMH, services, Services Subcommittee, support

Autism on KQED: Searching for Causes

Full disclosure: My husband is the online producer for Quest. He did not work on the segment itself, but advised quite a bit. I warned him, "They damn well better get it right." I think they did, e.g., the segment cites the dreaded "1 in 150," but explain what that stat means. I found the UC Davis in utero study sibling study fascinating, and of course you all know that Mali was part of the MIND Institude sibling study.

Mostly, I am relieved to see autism given the unbiased, platform-free investigative journalism treatment -- even the vaccine issue. No sensationalism or polarization here. Thank you, Quest.

Very interested to know what everyone thinks, please spread the word and links. Make sure you read the associated blog post, too.

I am fascinated to see yet another autistic child -- the initial girl, Meghan -- who like DivaLea's son and Kelley's son and Amanda Baggs -- looks as much like Leelo as a child with Down syndrome resembles his or her chromosomal peers. I'm thinking we should start a Flickr group. Contact me if you're in.

Technorati Tags: autism, autism blog, autism research, KQED, PBS, Quest

Punishment?

Suspending bickering girls over open water in a cargo net is not the punishment we thought it would be. Though it was fun to dunk their little bottoms in the brine and hear them shriek.

The Dangers of Piscine Cigarette Addiction

Look what their addiction is doing to them! The poor fish!



(This is one of the flounders in our bait tank aquarium)

Hoo hoo, we're having lots of fun during our last two days aboard, now in April Point on Quadra Island. It is not even picturesque here:


Sunset from the April Point Marina, Vancouver Island in the background



Here are the big girls on their floating water trampoline, which is different from -- though the same color and shape as -- their triple-blaster tubing rider that gets towed behind the boat.

I suspect that when these girls go back to school in a few weeks, no one is going to believe their "How I spent my Summer" essays.

Just Another Day for the World's Luckiest Children

So, today a pod of about fifteen porpoises came swimming and playing in front of our boat.



We initially saw them jumping off the side of the boat. Then we realized they were converging from all sides, and racing to catch up with each other. They leapt, they splashed, they raced, and they kept turning sideways to look at all the kooky creatures hanging off the front of the boat, frantically waving at them. The kids squealed and screamed and giggled and exclaimed, as did the adults. (Even so, Iz never once let go of Fairest, her most recent Gail Carson Levine book.)

Here are the girls looking at the dolphins:



We went shrimping and crabbing and fishing today, too. Sometimes we did not catch creatures we were hoping to catch. Sometimes we caught biology lessons instead:



But shrimp is still on tonight's menu. Especially if we draw the luck of the manager of Echo Bay resort, whose latest shrimp pot excursion yielded four hundred of Those Who Make My Bisque:



(I are holding it in front of the sun so you can see its BRAAAAAINS.)

We're still mostly doing a lot of this between our visits to various islands, bays, and coves:



Yesterday we went to Sullivan Bay on North Broughton Island. Every last house is on floats; there is nary a structure on land except a few water tanks. People there keep helicopters on their roofs, and float planes and yachts moored outside their front doors:



Earlier we went to Alert Bay on Comorant Island. Iz got to try poutine, we got to see some astounding art at the Namgis Recreation Centre and U'mista Cultural Centre, and we saw the world's tallest totem pole. We also got lost on an island the size of your thumb, but it was worth the wander to see the art adorning the exterior of so many homes on the island, and the the enormous murals covering the fronts of the local school and longhouse.


Carving on front of U'mista Centre


Base of world's tallest totem pole (173 feet) and Longhouse



Kicking myself for not verifying whether the building above is Alert Bay Elementary or the T'lisala'gilakw School. Kids in this area often do their schooling by correspondence in the uppermost grades.

At the moment we are in Echo Bay, but we're leaving in the morning for Blind Channel. All these small cove communities seem to have free and open wifi, which has been very cool, if not predictable. No cell coverage, though -- I spoke to Seymour for less than sixty seconds today; just enough time for him to reassure me that the horrible dream I had about Leelo had not had any repercussions in the real world.

We are all having the very best time ever. It has been emphasized to me that the girls deserve this, they need to have regular vacations, real family vacations without their brother. I still wish my son and husband could be here. It feels as though we're masquerading as a divorced family, really -- everyone keeps asking where my husband is. I doubt that my partner and I will ever get to break in this wonderful bed in our stateroom. Not together, anyhow.

But I am focusing much less on the bitter, and have almost completely succumbed to the sweet. This trip has been a treat and a delight, even if it is taking place in an alternate reality.

*Yawn*

Obviously no one here is having a good time:



Two seconds to post. So far we've gotten lost in Alert Bay, Comorant Island, which is the size of your thumb. And we're in Sullivan Bay, where people have helicopters on top of their house boats. Uh oh, engines started. More later!

The R Word Revisited

Pulled from my tweetstream for greater coverage and hopefully lots of forwarding: check out one salvo in Patricia E. Bauer's ongoing shred of Tropic Thunder's "retard" theme: http://tinyurl.com/6nqtjv

For more thoughtfulness on the subject, check out Jennifer Graf Groneberg's recent post: http://jennifergrafgroneberg.wordpress.com/2008/08/02/the-words-we-choose/

Jenijen pointed out Slurping Life's Conversation About Tropic Thunder With A Child Living With Intellectual Disabilities (Fanks!)

Technorati Tags: pejoratives, tag, thoughtlessness