My Autism Team Needs You!

In my previous post, I talked about my experiences with MyAutismTeam.com.

In this one, I am going to post the message that I received a few weeks ago, which is now mirrored on their FaceBook page:

"MyAutismTeam is in search of parents in San Francisco with kids who've been diagnosed with ASD to come to their offices to give in-person feedback about the website. The parents do not need to have any experience with our site at all.

"We are offering free parking, a $50 Amazon gift card and small special gift of thanks.

"Please share with other parents. If anyone is interested, have them write mary@myautismteam.com for details.

"We are scheduling several 1-hour feedback sessions all day Wednesday Nov. 9th and Thursday Nov. 10th between 10AM and 4PM at our offices in San Francisco (at 3rd & Howard nearby SFMOMA)."

Last Thursday I made the trip in to SF and participated in their user test/feedback session. It was fun. You do not have to be a techie to do this. What you do need is to be a user or potential user of their website. They are trying to make this the best tool possible for those of us who care for children on the autism spectrum.

It was great to meet the team again, and I have to say, the gift card did get me excited. Online shopping, just in time for the holidays!

Well, okay. Helping to build a needed online community -- that rocks too!

Laura Shumaker has written about this as well on her blog. Please spread the word and help the team build our community!

MyAutismTeam.com - I Wish I'd Known ...

"I wish I'd known ...." is a common lament from those with hindsight and experience ... that comes after the fact. With parents of children on the spectrum, it's a constant. We're all searching for more information, better understanding of our child, and answers that will help us.

It's not just for a diagnosis, root cause of our child's autism, and what to do/not do for our children, it's also where to take them for dental checkups, summer activities, and ideas for how to fill the deadly (for us) Unstructured Time.

After four years of coming to grips with our son's autism, I began emerging from a fog to realize several things that had crept up on me ... including that I was isolated and feeling a keen desire to connect with others. To share what works/does not work.

From my association with the CATS Program, I first heard about My Autism Team this past winter. They are committed group with experience in online communities and referrals that wanted to build an online community of parents of children on the Autism spectrum, so that they could share resources and rate programs and services for their families, in hopes that their hard-earned knowledge could benefit others, and vice-versa.

Login screen for MyAutismTeam.com

When their beta site launched, I plunged in and began building a profile, adding team members for all that had been helpful with a son who was largely non-verbal, developmentally delayed, social, and sensitive with certain noises. People who dealt well with yelling and crying during an office visit and who were willing to act as socializers for an atypical child. I've been reading others' profiles, searching to see if any providers will work for us.

Then there are the posts from other parents. Ones that make me smile, cry, and hurt my heart (both good and bad). The messages from other parents across the U.S., encouraging one another to hang in there, that we are not alone in our despair, frustration, and determination to help our kids and savour the good in life.

Questions, encouragements, advice. It's all there.

There is room for so much more and so many more families.

If you haven't visited already, please check out MyAutismTeam.com, or send an email to a parent you know who might be able to use it. They are also on FaceBook.

If you live in the SF Bay Area, MyAutismTeam.com is looking for parents to come to their office and give feedback on their site.

In Which I email the Guv

Dear Governor Brown: As a parent of a child diagnosed with Autistic Spectrum Disorder I am asking for your help in signing sb 946 into law.

I am letting you know that our family has lost half its income, as I had to leave my job to help cope with the therapies, meetings, research, and paperwork involved with getting our son the help he needed. We are feeling the crushing financial stress of managing more needs on less money, with less services available to us because schools and regional centers are also trying to operate on severely reduced incomes that keep losing ground even as the needs of the families rise. All this in the midst of a recession and rising prices. We need help financially and hope that this bill can be the start of better partnerships with insurers and the government so that families do not have to bear the brunt of the costs in dealing with a rising national epidemic and shrinking income.

Additionally, I have sought help from our HMO, and tried working with them to see if they could help supplement some of the services needed by our son, with discouragingly little success. The main reason I find for this is not the front liner providers. Indeed, they have tried very hard to help us. Their hands are tied by the industry. I am hoping very much that the passage of this bill can begin to reform this trend.

Finally, I hope you pass sb 946 by the October 9th deadline, because we are all facing physiological deadlines with our children that we cannot change -- namely the fact that a human brain is much more adaptable up to age 3, and thereafter begins to drop off in its pliability. The  earlier interventions start with a child on the autism spectrum, the better the treatments work. They also do not have to be continued for as long, because the adaptation is easier to facilitate the younger the child.

I know our state is in a huge financial mess. I ask that you not sacrifice the health of the next few generations to effect a quick fix. I ask that you consider that, while there may be some increased costs up front, the savings against having to provide future, costlier, and more pervasive services to a fast-growing segment of the population are overwhelming, and the well-being of our society so much the better.

What I and other families are asking for is help, so that we can make better partnerships NOW so our children can live lives that are more independent and self-sufficient.

Yours most sincerely, James' Mom

(okay, I used my real name, but that's how I felt)

Send your message to the governor, California! And if you're wondering why I emailed him, it's because I care.

Life is Funny, and Roof Rats

As I am typing this, I am hearing little scrabbling noises and sounds of acorn-like things being rolled across the ceiling overhead. Oh, how I wish I was living a scene out of Totoro with the susuwatari, but alas, it's roof rats.

I know because we just had our pest control person come to visit and check out said noises. I'd been expecting it, because over 5 years of pruning neglect and a huge crop of slimed cherries this year were pretty much a recipe for a rat fest of some sort.

So even though I did finally start up pruning again this year, it was not enough to keep branches far enough away from the house (3 feet, in case you're interested). I have my work cut out for me (ha-ha) -- over the next week I need to seriously whack back 3 trees and several bushes. I also need to appeal to our neighbour's sense of compassion to deal with one of their overgrowing trees.

So here's the funny part - I was feeling guilty about my lack of yard maintenance and trying to explain why it's taking me 5 years to start doing my own danged maintenance, as well as explaining why I needed their services rather than following instructions (so much cheaper -- they were trying to give me a break). "I know it sounds funny," I said, "but my son's on the Autism Spectrum, and when I think I have things on track and I can manage other projects, something comes up, and the new stuff just falls off the radar. That can be very bad with trying to nip this in the bud. Also, this is the first year I could go outside and work in the yard without my son screaming for me."

I light went on in his eyes. "How old was your son when he was diagnosed?" BINGO: Parental Autism Bonding. We chatted a good 20 minutes over diagnosis, services, and how lucky we felt about the help our kids have been getting. The ages and challenges are different, but the invisible, semi-undefinable experiences as a parent of a child on the spectrum were there.

So even though we do have roof rats and it'll cost us to get rid of them, we caught it early and that service person and I had a few warm minutes of solidarity. It made the invasion of those darned pests much more bearable. Life is funny, I tell you.

Five Cents for Life

This morning I was reading Mindy on The Mommy Blog and her push to help prevent mother and infant deaths from tetanus by making donations online. Five cents is all it takes to help get a mother or her child vaccinated. Here is her first-hand account of meeting with the people who created this program. Please consider donating and/or spreading the word. I am donating my budgeted coffee, etc. money for this week. It's not much, but what a way to use it. I will also try and get the widget in the sidebar here.

Widget:



What does this have to do with James? I sat in a room full of people just last week who were committed to helping their children with special needs as much as they could. I see parents and their children every day. I love my children so much. I see their eyes light up when they see me.

Pass it on.