The importance of an advocate

a month ago

The older I get, the more I realize you don't get very far in this world without some kind of help along the way. This is definitely true of this foundation. We wouldn't be standing here if you all didn't support us, and I would have no knowledge to pass on to any of you if we didn't get to know the people we have throughout our journey.


And I don't think I we will ever go along to another IEP meeting for Sean ever again. We will always take an advocate with us.


Sean has come so far in the past three years. The child who couldn't be let out of my sight can now go down the street and play with a friend (even though at the very least I have big brother Braden close by to keep an eye on him.) The child who refused to read at all just sat at the kitchen table tonight and read a chapter book with Daddy, and has favorite books and favorite series he's interested in. The child with out of control meltdowns is now verbalizing "this makes me mad" or "I feel agitated" and with the help of his wonder puppy can is starting to learn to calm himself down. It's truly a miracle! I never thought we would get this far.


But there is still along road ahead of us.


I frequently describe autism as being similar to a game of Whack-A-Mole. You hit one of those things, and another pops up. Same goes with autism. You tackle one problem, another pops us. Sean's behavior for the most part is under control, but we are now seeing the problems related to the disorder show up in his academics. Having to sit and work through a math word problem is sometimes torture. His handwriting is illegible. Sean can no longer memorize things and must use reason and comprehension, and it's not easy for him to adjust to. He can't compensate and get by. The work is getting harder and he must show he can do the work, and he has to do non-preferred tasks. Not easy for a kid who does things a certain way and does not adjust well to change.


We know this, but the school didn't seem to be catching on. For weeks before the IEP as we tried to express our concerns, we just kept hearing Sean was fine, Sean was perfect, there were no problems, everything is just great. We knew better, so when we went into this IEP meeting, we took an advocate with us.


The result? No fighting, no arguing. Things like Sean wearing his glasses were written into his IEP (why they refused to make him wear his glasses before then I have no idea). It was also revealed upon further review and asking Sean was majorly struggling with math, and while the reading was in the acceptable range, it still had a long ways to go. His handwriting, fluency, and the way he was processing lessons were off, and he needed more help than officials were originally letting on. Not sure we would have gotten that much information without an advocate on our side.


We have tried in the past on our own to argue for things Sean needed. Those meetings turned into hours-long knock-out drag-down battles. With an advocate, our meeting was just over an our long, Sean will be permitted to take tests such as the PSSA-s with accomodations, I will get weekly reports from his regular teacher and special ed teacher, and a full outside evaluation will be performed. Sean hasn't been evaluated with a full workup, IQ test, etc, since kindergarten.


Having an advocate on your side works. If you need things and the school isn't providing it, get an advocate. If things are going well, but you want to make sure they continue to go well, get an advocate.



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