The Fredericksburg Autism ASD Playgroup Tuesday, Mar 30 2010 


On perusing my past entries I noticed that I had not, as yet, mentioned the play group I helped start. To that end, I thought my readers might enjoy hearing about some of our successes and may want to think about bringing their kids.

The idea started a fews years back. As soon as we heard “social deficits” I began taking Raymond to a play group once a week, booking play dates at every opportunity and getting Raymond as many social opportunities as possible. I noticed, however, that as the more typical kids grew socially Raymond ended up on the outside more and more. This really bothered me.

You see, I am a very social person. I love to connect and communicate, and conversation and cameraderie are among my principal joys. It frustrated me that my son might be denied something so important to me. I also felt that it was not fair that he not have the same opportunities for friendship as other kids just because he had a disability. My wife, sick of my ranting, told me to do something about it.

So I did. I started posting on craigslist, bulletin boards and wherever else I could find about a play group for special needs kids. I didn’t have much luck, and some of that I attribute to being a dad instead of a mom. See, stay at home dads aren’t invited into “mommy and me” groups. I don’t know if its because there are so few of us or if its something else, but that barrier was tougher to navigate than I thought. Luckily help was on the way.

During a playdate with another boy on the spectrum, another mom told us she was trying to start a play group to create social opportunities. She had flyers printed up and everything! So we talked and decided to combine our efforts. She broke through the gender barrier and I helped her spread the word. We put flyers up all over town!

Things started slowly with a trickle of parents. We began small, having play dates in different homes. However, we soon noticed that the in home group was difficult primarily due to the large number of distractions. Between a new place to explore and a new set of toys we had difficulty generating meaningful interaction. We knew we had to break out, but where could we go?

Our first venture was to American Family Fitness. They were kind enough to let us use a room for free and even waived their fee for non members. We kept it simple. We did an obstacle course and a few social games. It worked like a charm. The new location and single room limited distractions and made it much easier to stay together as a group.

We we also started bowling at Liberty Lanes. They give us a great discount and are very accomodating. Once a quarter our kids get great heavy work lifting a bowling ball! We also do an outdoor play group a couple times a year.

We have grown from 2 families to 30 and our events get better every month. In fact, our March 2010 group featured a yoga instructor who volunteered her time to teach our kids a yoga class. Even though our play group can be a bit like herding cats, she had 14 kids on the spectrum calm and trying the exercises. It was amazing.

Many parents were also looking for a support group. I was not interested in a crying jag, but I always wanted a place to discuss therapies, biomedical interventions, etc. To that end we started a monthly Think Tank, which is a place for positive parents to discuss solutions that work. I have gotten some great ideas from it.

If you are interested, send me an email or find me on facebook. We do have a facebook group, but it requires admin approval to join. I keep it that way because I want to protect the privacy of our kids and families. I also send out email updates for non-facebook folks. If you want to bring your kids to a place where no one will look at them like they’re crazy then our play group is the place for you!

Advertisements

2010-2012 Virginia Budget Update Thursday, Mar 18 2010 


In the interests of full disclosure, I want to let everyone know that our voices were heard. For those who took the time to write your Virginia senators and delegates, your time was well spent. Thanks for your help. I want to dig a little deeper and go into a little more detail. Our biggest win, in my opinion, is the fact that the Consumer Directed services will remain in the budget. Our other big wins for the disabled community are listed below:

250 new ID Waiver slots added. (as long as VA receives federal matching funds through the Federal Medical Assistance Percentages, or FMAP)

Respite hours are not reduced to 240 per year but will instead remain at 720. (again, as long as VA gets matching funds through FMAP)

Waiver provider rates will not be reduced.

No freeze on waiver slots. What this means is that if someone drops out of the waiver program then the next person on the waiting list will get in. With the freeze the numbers would actually drop instead of remaining the same.

Reductions in service and loss of services are listed below.

No new DD waiver slots. This one really hurts us in the autism community. Virginia does not have an autism waiver, unlike Maryland, so families with kids on the spectrum really rely on these waivers.

Environmental Modifications and Assistive Technology portions of the waiver will be reduced from $5,000 to $3,000. However, if we receive funds from FMAP the reductions will only occur in the second year.

Allowable income limits will be reduced to 250% of SSI or $1,685. Currently we use 300% of SSI, or $2,022. However, this will not be put in place if we receive funds from FMAP.

We did sustain some losses and make some compromises, but all in all I feel like we kept the community service model in place. Think about where we started, with institutionalization and seclusion, and where we are now, implementing community services and inclusion. Our kids become more enfranchised and empowered the more we talk about them and share our experiences.

Call or email Governor McDonnell and urge him to pass this budget. It works for our kids.

Also, I want to extend a personal thank you to Senator Edd Houck. He voted with us every step of the way and did a great deal to help our kids. In fact, he was on the Budget Conference Committee that finalized some of these details. If you’re in his district and you have a kid on the spectrum, he has definitely earned your support. Show him you care and send him a thank you letter or email.

Rock for autism 2: Updated song list Sunday, Mar 7 2010 


Okay, I know everybody (ie me) loved my last music and autism post, so I thought I would share some of my son’s new favorites.

1. Them Crooked Vultures – New Fang I’m not sure what he things this song is about, but he sure smiles when its playing and requests it when its not on. Heavier, which surprises me a little as I thought it might be a little overstimulating. Apparently I was wrong.

2. Them Crooked Vultures – Elephants I’m pretty sure Raymond thinks this song is about Horton from Horton Hears a Hoo. I say that because I’ve caught him humming it while recreating the bridge scene with some thread and a toy elephant.

3. Led Zeppelin – South Bound Suarez Lots of piano, good bounce, great vocals. This one makes sense to me. It also happens to be one of my favorite Zep songs, so that doesn’t hurt. 🙂

4. Frank Zappa – Apostrophe Normally my boy is not a big Zappa fan, which is more than a little disappointing to his dear old dad, but he sure loves this tune. I think it might be all the low frequencies from the phenomenal bass solo.

5. Old Crow Medicine Show – New Virginia Creeper Although it is more of a metaphor for something else, he likes it because it has lots of train words and sounds. Also, he refers to OCMS as “farm music” which cracks me up.

6. I don’t know the name of the song, but he made me go back to a Taproot song while I was flipping through stations the other day. I was surprised as it was a really heavy song. Maybe his tastes will mirror mine a little more than I thought.

If you are a music nut like me and you want a social platform to share it on, I recommend Blip.FM. Blip let you play your own song list and make friends who like similar music. If you want to check out my blip stream, you can do so at http://blip.fm/InfamousRAY. Raymond and I hope you dig the tunes and I’ll post again soon.

A few words on joining the Autism Society of Northern Virginia, or ASNV. Friday, Mar 5 2010 


As I mentioned in a recent blog post I am now a member of the Autism Society of Northern Virginia. I am telling everyone this for a few reasons. First off, it is a great organization that helps a lot of people. Second, it is part of a national organization that helps a lot more people. Finally, I want to be clear that while I serve on the board, this blog is my voice, not the voice of either of these two groups.

ASNV, or the Autism Society of Northern Virginia, has been around for quite some time. The website has a ton of useful links. We participate in conferences, hold classes, work with corporations, promote awareness and give grants to folks in the community.

That’s right. We give money back to our own community. That’s a big deal to me. You can check out our listserv on Yahoo Groups. The online resources include applications for the different grant programs, our bylaws and newsletter. You can also check Upcoming Events to see what is coming up in the world of autism in Northern Virginia.

Let me speak to that for a moment. ASNV just recently expanded into Fredericksburg, which is how I got on board. Fredericksburg is the cusp of NOVA, in my opinion, but a larger number of our folks commute to NOVA so I think it makes sense to join a large group that has programming in place and expand it to our area. There is also a Central Virginia chapter that is based in Richmond.

I am working on bringing some events to the Fredericksburg area, and I’ll post some of them here as I get them nailed down. For now, just check the calendar and see what works for you. ASNV works with other disability groups toward common interests, which is another thing I like about them. “Stovepipe thinking” seems to get in the way in our world ,and the more open minded we are the more opportunities we will see for our kids.

The national organization is still known as the Autism Society of America. They do a lot of advocacy and research, and we have been supporters of ASA for years. When we were first confronted with autism, we looked into many organizations. We decided against supporting Autism Speaks because we didn’t feel they focused their money on the community or evidence based practices, choosing instead to fund ridiculous amounts of gene research. We decided against TACANow because there was no local chapter and we didn’t have the time or energy to start one. However, we looked at the Autism Society and liked the fact that they supported biomedical intervention, put money back into the community and had a strong advocacy arm. I feel like we made the right decision. I recommend that if you like it, you join. If you pick a local chapter, the lions share of your $25 a year goes back to your local chapter, be it Central VA, Northern VA, North Carolina, etc.

Finally, here is my disclaimer. Although I am on the board of ASNV and a member of the Autism Society, I do not speak for them. The opinions and advice here on my blog are my own, and in no way reflect what ASNV or the Autism Society believe on the subjects I post about. I feel like folks need to know that so they don’t blame the organizations I support when I say something they don’t like. 🙂

%d bloggers like this: