The Limits of Parental Advocacy

Sometimes You Just Have to Hire A Lawyer

For the first time in 2-1/2 years, Ian is in the right place. He attends a full day, in-person private school aimed at square peg students, aged 18-21. This year, he will get extra help for reading, improve his social skills, gain work experience, and get support at the local community college. Guidance counselors will teach us how to fill out government paperwork and help us map out a plan for his future. I am beyond relieved.

Even before COVID completely derailed Ian’s schooling, his education was mediocre at best. I tried to improve this situation at his yearly IEP meetings and throughout the year, after reading copious resources on the Internet about rights and procedures and getting tips from other parents. Our advocacy was all DIY, because as recent graduates from PhD programs, we couldn’t afford a $500 per hour attorney.

Despite all those Internet resources and chats with friends, Ian never had a great education. At the best of times, he was included in a regular classroom with an aide, but without any extra help for his weaknesses. In the worst of times, he was stuck in a tiny classroom in a basement with lower functioning students who screamed all day. I should have hired a lawyer when he entered the public school system at age three. Self-advocacy, even for this highly educated mom, never worked.

I began asking for extra help for reading back when he was in third grade, and it was clear that his decoding skills far surpassed his comprehension skills. He needed some one-on-one time with someone who was an expert on these matters. For ten years, I was blocked by a smiling cheerful case manager, who used meetings and tests to stall and deny services.

At every IEP meeting, I would say that Ian needed extra help with reading. They would say, “he reads just fine”. I said, “no, he doesn’t.” Then they said okay we have to do some testing, but first we should have another meeting to discuss the testing. Then he would get testing, which was engineered to find that he read just fine. This whole process would take months. The following year, I would ask for help again. And there would be more meetings and pointless tests and emails.

In ten years, he never received one minute of extra help in reading. I have hundreds and hundreds of emails saved in a special folder in my gmail account, which document this Sisyphean efforts. (Always keep your emails with the school district.)

Last spring, we hired a lawyer to help us with the paperwork for guardianship and a special needs trust — a lawyer is mandatory for those matters. As he got to know us, he asked questions about Ian’s situation, and advised us to make a big change.

Together, this attorney and I spent an entire year building our case. I learned how to write legal briefs. I assembled spreadsheets with data about all the hours and hours that Ian spent in a dark room playing video games on his phone. There was still quite a bit of DIY work involved with our legal efforts, but until an attorney entered the picture, nobody took me seriously.

Regret seems to be a common experience with special needs parenting. There’s no guidebook on being an autism parent; sometimes you have to make mistakes before you figure out the right path. While I’m mostly just relieved that Ian is finally in a good school, I am also beating myself for trying to outsmart a school bureaucracy on my own. It was futile. Schools don’t want to spend money on kids like mine, and I now know that schools only help when faced with the threat of an attorney.

Now, I don’t think that special education has to be so terrible, requiring attorneys and vigilant parents. Schools could be more effective, and even more efficient, with smart reforms. If parents like me increasingly use attorney and win large settlements, then maybe schools will be forced to improve.