Where’s My Advocate? When Special Needs Parenting is Exhausting

SupportI spend a lot of time encouraging parents to advocate for their child and reassuring them that they’ve got this managed. But what I don’t always talk about is that there will be days–maybe even weeks–when you may feel like you don’t have it managed. You may feel exhausted and frustrated and like you’ve been climbing uphill without any end in sight. You may wonder: Where’s my advocate?

Every parent advocating for their child deserves to have someone to whom they can turn when they’re exhausted from the fight.

That’s how I feel right now in terms of my own son’s IEP and services. To give you a little background, just about three years ago he was in residential hospital/school setting. He was hundreds of miles away from home for 93 days.

That’s 93 days that I couldn’t feel my child close to my heart. 93 days in which I did everything in my power to ensure he would come back to a school prepared to finally meet his needs.

That meant working with the Disability Rights Center, making a state complaint and having meeting after meeting–while he was away from home. We prevailed. He came home and has steadily made progress. And that progress is what’s tripping me up right now.

Photo: puck90 via Flickr/CCL

Photo: puck90 via Flickr/CCL

Sometimes You’re Going to Hit Obstacles

We got his IEP progress report in the mail the other day. It comes separately from his report card, but at around the same time. That’s because the law says the school department has to report progress toward IEP goals as frequently as they report progress in the regular classroom. So that’s fine.

What’s not fine is that is that it’s reporting progress on the wrong goals. At his annual IEP meeting, I fought hard to keep his services in place. He’s been making decent enough progress with supports in place that he’s fully mainstreamed and academically doing great. Considering where he was three years ago or even a year ago, that’s amazing.

You may feel exhausted and frustrated and like you’ve been climbing uphill without any end in sight. You may wonder: Where’s my advocate?

But the supports are what makes that possible. So, again we prevailed. Supports remained in place, but the IEP team modified and rewrote his goals to meet his current needs.

I’ve been uneasy about whether or not those goals are being addressed. I’ve made phone calls, sent emails, and checked in numerous times in polite but pointed ways. I’ve been reassured it’s being done, that they are following his IEP. Now I know that is not happening because his progress report is reporting on the old goals.

Where’s My Advocate?

And I know that means I need to make another phone call, send more emails and call another meeting. I know what to do. I know what to say. I know what to ask. But I’m tired of the fight and I want to know: Where’s my advocate? Who’s got my back in this?

I’m lucky enough that I have an answer to that. It’s my husband, who has no training in advocacy or special education, but has learned over the years by attending meetings, by watching me in action and by asking me to explain every move I’ve made. On a day like today when I know I’ve hit my limit, I can ask him to take over for a little while and he’s able to do it.

It’s OK to feel like you just can’t do it anymore. It’s OK to ask for help. Every parent advocating for their child deserves to have someone to whom they can turn when they’re exhausted from the fight. For many of the people I know, that person is me. For you, it might be a professional advocate (you can start your search for one on the Council of Parent Attorneys and Advocates website) or a friend or relative you trust.

Today, I feel like crawling under the bed and not coming out. Today my husband will speak for our son. Today I will take care of me, so tomorrow I can take care of business.

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