Word is getting out!

[airial95]

So, at the suggestion of Dr. Murphy, my husband and I started a 6 week parenting class last night for parents with kids with Autism and other behavioral problems. To be honest, we had no idea what to expect going in. Out of 15 folks in the class, a few were special ed teachers there for training, there were parents of autistic kids, and a few kids who were behind in verbal development. No surprises, we were the only ones with a PANDAS kid and none of the other parents in the room had even heard of it.

 

I gave the 5-second summary of what PANDAS is, and what behaviors it causes. One of the instructors was a licsenced school psychologist in our County. One of the discussions we had was about special ed programs, etc. I asked about the EH classroom, what is it, etc... since that's where they're going to be putting my son next month for Pre-K 3.

 

As the night went on, and we got more into it, and more details were emerging about everyone's kids and issues. This guy stops, looks at us, and says (with a weird look in his eye) "You know, that acronym 'they' gave you, I don't know if about your son...well, we can talk about it after class."

 

What the heck did that mean!!! Well, I immediately went into PANDAS Mom Warrior Mode, and sat for the rest of the class convinced that he was going to tell me that's not the problem with my kid, PANDAS doesn't exist, etc... Just the way he looked skeptically at me, and said "that acronym 'they' gave you" as if it was some made up BS. I had already resolved to speak to him after class, give him the business, and then vow NOT to return for the other 5 sessions to listen to someone who doesn't believe that my child has what 3 differnt doctors (including one of the leading researchers in the subject) have confirmed he has.

 

After class, I politely told him that our son is a patient of Dr. Murphy and she confirmed his PANDAS (the class is through USF - same college as Dr. Murphy, so this guy should have heard of her...) so what did he want to say?

 

I was a little embarrased at my presumption when he went on to tell me, not only was he familiar with PANDAS, and Dr. Murphy, he also knew and worked with our behavior therapists, who told him we would be in his class. He wanted to talk to me after NOT because of the PANDAS acronym, but the EH acronym, the classroom that the school district is putting my son in. He's concerned that they don't understand the medical aspect of his condition, and if it was okay, he'd like my permission to get more information from our therapists so he can advocate for us with the school district to make sure his IEP is properly focused on the HEALTH related issues not just the behaviors.

 

Moral of my story - I had a chip on my shoulder cause I automatically thought he was going to be a naysayer, and it turns out he may be a good educational advocate for my kid. The word is getting out there (albeit slowly) - and I think I need to keep a more open mind (just like we're asking all of our doctors to do!!!)

[thereishope]

It's going to take quite a while for all of us to allow those automatic defenses to go down. When you fight so long, it's instinct. So are you more comfortable with the EH class now?

Edited October 6, 2010 by Vickie

[airial95]

Not at all...I still think that the constant disruption of kids that have "full time" behavioral disorders might be too much for my son to handle when he's doing better. (He's at about 80% now between exposures...and continuing to improve).

 

Honestly, I hate to say this, but our thought is to get his IEP set up, let them place him and work with him for a year so we can be eligilble for the McKay scholarship. In Florida, if your child has an IEP in place, and has been getting services through the local school district for at least 1 year, if the parents decide that the school can't accomodate the childs needs (which considering the actual school folks we're dealing with have NO understanding of the medical side of things - isn't a stretch), the state will provide $$$ towards private school for your child. However, it typically takes 2-3 years to become eligible because most parents don't start the IEP process until Kindergarten, and the process locally takes up to a year to get in place (since they have to collect their data first), and then you have to have the IEP in place for a full school year before your eligble.

 

We're sort of seeing this as an opportunity to get a jump start on eligibilty for private school if we need it. I know it sounds like we're expecting the school district to fail - but with the experiences we've had so far with them, and the horror stories I've read on here - we're not exactly optimistic.

 

I'm glad that I have someone who understands, and is willing to help us advocate, that's within the system however. That might be helpful.

[tpotter]

After my experience at work this year (at least 5 of the 16 I treat are suspected of having PANDAS...at my suggestion of having them tested...and they appear to have other issues, such as Autism, Trich, etc.), I am willing to bet that there were other undiagnosed PANDAS kids at your class! Just a thought!

[kimballot]

I have goosebumps reading your story. The tide IS turning!! It is so hard to not get defensive and not be ready to fight back. Someday EVERYONE will have this experience... but only if we all keep fighting.

 

I am so happy for you! (in that weird sort of way that only a PANDAS parent can understand)