Advocacy - remembering what is important

My life feels like it is on pause lately. I have so many irons in the fire that I am not sure if I am coming or going. It seems that I am going to support group meetings or committee meetings atleast twice a week. It really has gotten out of hand. Fortunately, a few of my affiliations are coming to a close now that JP is entering the school age population.

I am ready to cut back...but I fear that I may have put my hat into too many rings!

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For example, one organization is a council made up of school, health and human service agencies and families. I was invited to sit on the committee as a voice for autism parents in our region. Although this has been interesting, I am not sure it has been very productive.

The only measurable success (from my narrow perspective) has come from our starting a parent network for all Early Intervention (birth to age five) parents in our school district. We wanted a way where our families could meet and get to know each other. We wanted to help end that isolated feeling we all have.

Initially, the Special Ed God in our district shut us down but we tweaked the plan and finally got her to allow it. But since it was "school affiliated" it had to be educationally based and NOT A SUPPORT GROUP. (i.e. they didn't want to create an environment where us families could get together and compare services). I guess I can understand their concerns.

Several people have put their blood sweat and tears into this group yet the participation has been rather dismal. Truthfully, the structure of the group (all disabilities) just makes it virtually impossible to meet the "educational" needs of such a diverse population. Still a lot of work has gone into the family network and I really hope it continues next year. Unfortunately, this years performance has put that future into question. It still has a few champions so I am confident they will give it atleast one more year.

One successful advocacy tool to come from the parent network is a Yahoo group designed for all parents of special education families in our school district. It was started by an anonymous individual (wink wink). It was a big "no no" according to the "Special Ed God" but we did it anyway. It is a separate entity from the network so it has absolutely no affiliation with the schools. Frankly, discussion is tamed because many of the families still worry that the school can see what they say. Ultimately, this has proven to be our "support group".

Ultimately, I have managed to meet 10 autism families with kids between 3 and 6 years of age. So in December we started our own support group and actually met at my house the first couple of meetings. We are now up and running and rotating between the member's homes. It has been awesome! It is helpful to talk to other families that are facing many of the same issues.

Part of the problems is that we live in a large metro area but our school district is broken out from the metro area. So we can go to metro autism events but it is rare to find a family from our specific district. The truly frustrating part is that I have found about 4 families with older autistic children who were in our district. The key word is "were". They have all opted out. This scares me. But so far things are going well for us with our district.

Interestingly, I've heard rumblings that the school folk aren't so fond of us autism parents getting together. We have one family that is raising hell and I giggle thinking that the school might blame our group. Truthfully, this family was going all on their own. Most of the rest of us are just watching them in awe. Sadly, that family might be moving away. We'll see. I was looking forward to having them around to cause waves!

I've also heard that I got the credit for the group coming together. Oh well. The sad reality is that we came together because as new families asked about what they could do at home to supplement the district resources--they were pointed toward me. There is little resources in the community to help them get started and no one in the school was willing to get them up and running with a structured home program. Ultimately, the families are told about "another family in the district who had success with a Verbal Behavior Program" (i.e. us) and given my email. Eventually it got tiring going over the entire song and dance every time a new family was diagnosed so we just decided to pool our resources and start a support group. We are meeting once a month and helping each other cope with life's ups and downs. (Does anyone else find it sad that so much of the time it feels like the blind leading the blind?)

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Well, back to the parent network. Initially it was discussed as being for all ages. However, the council we were working with was only birth to five so we started there. Another mom and I decided that we would run with it for school aged families as well. (I should explain that we are removed from the (birth to five) council when our kids enter school. Her son was in Kindergarten this year and as you know mine will be there next year.)

So we applied for a grant to expand this program to the older population. We needed the grant so that we could have the funds to bring in good speakers. We knew we had to make the topics narrower in order to make this group more successful. After all, it would be impossible to find a topic every month that would interest the entire special ed population. We considered it to be a success if we could present a couple topics to include each family. We worked our butts off getting the grant written up.

But I have had an uneasy feeling from the beginning. Special Education just doesn't seem to be a a priority. Our district has the reputation for being one of the best academically in the metro and people move here for the schools. But let's face it, our kids don't quite fit into that mold. Plus the mediocre success of the birth to five program didn't prove to be very good advertising. My gut was right, we received word today that our grant did not receive approval.

This might be a blessing. It was going to be a hell of a lot of work. My partner in crime and I just talked this evening and she is still committed to moving forward. (I was ready to walk from it out of exhaustion.) But she is right and this might actually will be better now that we don't have any school affiliation. We are now free to make it a support group. We are going to try and find a room in a church or library where we can meet without a room rental and just start up small. Perhaps the school did us a favor by shutting us out as now it doesn't have to be 100% educationally based and us families will have a chance to network and advocate!

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In our state, services simply suck. There is little information out there for families and there are few private providers knowledgeable about autism. Ultimately, we have one autism body to represent the parents and it is affiliated with the Autism Society of America. Of course that is not why we suck but it explains why there is virtually one think tank in the state--Behavioral. I find it really silly that all we hear about is ABA yet there are virtually no ABA services in our state. (In fact, I've heard a few horror stories about special education teachers not even knowing how to do a discrete trial! But I need to be fair and say that there are also some very competent teachers out there too. For example, our current teachers are amazing!)

So anyway, another parent at a support group I attend is on the board for the Autism Society of (*My Mystery State) . They have a couple of vacancies and she asked if I would be interested in running. At first I freaked and said no. I felt like I was a geeky freshman being asked to be on the student council with all the rich older kids. I wasn't sure I'd belong there. Then I thought about it and decided that I have no right to bitch about the services unless I am out there trying to make them better.

Needless to say, I am a little nervous about joining up. This organization is as mainstream as they come in my conservative state. In fact, I know there has been a lot of political debate among the members because at the annual state conference this group refuses to allow any biomedical topics. As usual the two autism camps do not play nice. And here in one of the most conservative regions of the US, you are considered a circus freak show if you go so far as to mention homeschooling or even a glutein/casein free diet. In fact, I wouldn't be surprised if most of my neighbors account for President Bush's 38 percent following.

So I am going to the board meeting this weekend to put in my name up for candidacy. Of course, once I get there I can change my mind. Maybe I shouldn't do this. It might be more politics and work that I want to take on. Atleast my friend will still be on the board and we will be in it together. We'll see...

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A couple of weeks ago I started perseverating on JP's summer plans. His principal at the school he will likely go next year had mentioned a summer school program for incoming Kindergartners. But I am also planning to send him to a local Recreational Therapy camp. So I followed up with the principal to see if I could get the dates for their program. That is when she told me they did not get their grant. Bummer!

Then today she emailed me to let me know that they did get their grant after all. That is really great news because now JP will be able to attend a program at this new school with some of his actual peers for next year! This will be huge for getting him adjusted to his new environment! (As an interesting side note... it is very likely the same organization that turned down the grant request for the special education parent network that I mentioned above. Oh well...it is still a positive event for my son.)

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Several weeks ago I applied on behalf of our metro area autism support group for DVDs of the complete presentations from National Autism Association 2005 National Autism Conference. The conference consisted of 40 presentations from renowned autism experts in fields ranging from cutting-edge scientific research to getting the most out of Individualized Education Plans. It covered behavioral as well as biomedical issues!

I got word today that we were selected to receive the free information! Now I know that much of this information dates back a couple of years but when much of the state has no informational resources this will be awesome for so many of the parents! Not only will our local group have access to it but we will be planning to share it statewide! I am very excited about the possibilities!

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So I have droned on and on about all these organizations and my activities. Ultimately, today was a big day. I feel like the pause button got switched off and the movie of my life is finally moving forward. I now know what projects lie in front of me. I know where to focus my energy. I just hope it continues to play at the regular speed and not fast forward!

Yes, there were ups and downs. One grant approval means more (free) summer services for JP. One grant rejection may mean less work for Mom (but continued isolation for our district's special ed families). One approval (for the DVDs of the NAA confererence) means more work for Mom but that work will be exciting and hopefully educational! I am just so relieved to finally to have a direction regarding all of these issues.

Now I just have to make it through our Re-Verification/IEP/Kindergarten placement meeting that is scheduled on the 26th. After all, the future of the little man that we are discussing there is the only reason I am getting all caught up in this advocacy stuff. His future has to be my priority!!!!

Please help me keep all of that in focus!!!!