November 28, 2010

Providence

Posted in My Take on Autism tagged , , , , , at 8:50 pm by autismmommytherapist

I attended my oldest son’s first IEP meeting at his new school yesterday, an event which lasted more than two hours, was conducted with consummate professionalism, and was coupled with a level of conversation which actually made my brain hurt afterwards. Before some of you decide to hate me, please know that not every meeting throughout the course of my child’s educational career has been this pleasant. Trust me, my mom and I have really “worked it” in two different states to get to this point.

I have enough PRISE manuals to wallpaper my bathroom now (and I mean the big one).

Most of the meeting itself was unremarkable, filled with discussions of goals we hope are attainable for Justin, lovely anecdotes of how well he’s fitting into his new placement (I’m a sucker for that stuff), and a very cogent explanation of assessments conducted on him up to this point. Other than my noting not a single behavior was deemed worthy of discussion (which is not to say he doesn’t have them, they’re just not prevalent enough to talk about anymore), there were no tremendous “aha!” moments, no surprise concerns. Between my mom and me, somebody only cried once. It was a good day.

In addition to being an IEP get-together this was also technically a “placement review” meeting, and I’m happy to say they’re keeping him (2010 continues to be a banner year chez McCafferty). We all even came to consensus easily on which augmentative device Justin should be upgraded to, since it’s become clear he’s outgrown his Springboard. Within the next few months my seven-year-old will be getting an iPad, and in seven seconds he will understand it better than I will in seven days.

Even though I’m technologically Amish, that’s still saying something.

My mom and I actually had time to grab lunch post-meeting, a rare treat for us, and as we drove over to my cherished local Panera Bread I had a few minutes to reflect on what had transpired over the last few hours. The entire conversation had simply been so civilized, so respectful, so incredibly knowledgeable. Without a moment’s argument my school district concurred with me and my child’s school that the fairly sophisticated iPad was best for my son, and agreed to fork over close to four figures to purchase it. The meeting concluded with a long-term plan which will hopefully broaden entire communicative worlds for Justin. I was in heaven, even without being the beneficiary of a free meal afterwards.

Then, while driving, I remembered an email I’d received that morning about a fellow blogger, one whose son desperately needed the same device, and whose school district clearly wasn’t going to purchase it. I felt a wave of guilt wash over me (sorry, but my Catholic and Jewish buddies haven’t cornered the market on that emotion entirely), and sent one of my silent vibes to the universe that by the end of the day the lovely fundraiser one of her friends had put together would result in its acquisition. I had read a bit about how a borrowed iPad had been instrumental in helping this little boy, and was hopeful a device which had so eased his way in this world would soon be his permanently.

And it struck me, we talk all the time about how lengthy the spectrum is for our children and adults with autism. We can’t forget how wide it is for the parents who are navigating it either.

There are still families residing in a myriad of states where Early Intervention services afford children only scant resources, much as Virginia did for me in the long fifteen months I was my child’s primary ABA provider. Entire school districts in this country remain inadequately prepared to meet the needs of their autistic populations, and continue to struggle financially to alleviate the situation. Despite progress made on this front, many insurance companies still refuse to pay for science-driven, evidence-based therapies, so families can supplement what their children are not receiving in school. And as for my pet cause, long-term care, it was just last week I was told how in one mid-western state the government was encouraging caregivers who could no longer be responsible for their adult disabled children to simply abandon them.

Clearly, this last suggestion is not a viable solution.

I am well aware Rome cannot be fixed in one day. I just have to share that I was really moved this week by such a coming together of minds and hearts, how a community reached out despite its own disparate struggles to help a family most of us have only seen on the internet, and did so willingly. I’ve written often about how I wish our “clan” could learn to respect one another’s stances (and boy, there are many), and I have to say I’ve felt the tide turning this year, have with eagerness watched a growing tolerance for our community’s various views. I’ve also witnessed an increase in tremendous acts of kindness, many from families experiencing a myriad of difficult situations themselves, yet still willing to reach out to others.  I feel that within the past year being a member of this multitude has begun to provide entrance to a kinder, gentler world.

And I just want to say, I’m proud.

Advertisements

6 Comments »

  1. misifusa said,

    Great news about Justin. And we are so proud of you as well! xo

  2. LZ said,

    You do realize that you, your efforts and your blogging about your experiences, deserve a share of the credit for that turning of the tide…?

    • You are so sweet, but at this point it’s just a wee bit lapping at the shores for me, hope tide turning is in the future!

  3. Shivon said,

    You are amazing. I am so happy the IEP went well and that they are buying his iPad, I can’t wait to hear how he does with it!!

    • Me too, we are very fortunate. He’ll be teaching me things within minutes. Will let you know how it goes, hope you’re well hon!


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: