Advocate like a Mother

Tis the season for chocolate and wine and tears. While most mothers take this to mean a cheesy Valentines day celebration with their sweetheart, mothers (and fathers) of children with Down syndrome know what it really means….

It’s IEP season.

That means chocolate and wine is needed to hold back the tears. In the past week I’ve read at least 3 social media posts that started something like this: “My goal for today is to not cry at my child’s IEP meeting…” To you, mama, I say: let the tears flow. Eat the chocolate; pour an extra glass of wine.

“There is no more powerful advocate for children than a parent armed with information and options.” –Rod Paige

We are our child’s best advocate, which is why we cry. Because we actually get it! We understand our child’s true worth, and what’s at stake. And the numbers are abysmal. In the year 2017, ALL but one state reported more than 60% of students with Intellectual Disabilities (ID) spent 50% or less of their day in general education classrooms. Check out the report here (the numbers for inclusion in general education start at page 49). The end result is 80% unemployment for people with ID.

Read Related Post Here: The Immortal Mom: Why I Can Never Die

Yes, you need to arm yourself with information at the IEP table and advocate in a professional manner, but you also need to inject emotion and heart into a meeting that too many schools turn into a check-the-box, fast food version of education. They need to understand that your child is not just another box to be checked; that your child deserves to “Have It Your Way!”

So, what can you do to advocate for your child at their next IEP meeting, while keeping heart?

1. Bring an advocate: Never, never, never go alone to an Individual Education Plan (IEP) meeting. Bringing someone, anyone with you, gives you the freedom to cry and share why your child deserves more. The advocate provides an objective view of the meeting, and an important counter to school personnel. This person can take notes for you, ask questions that you planned to ask before you started crying, and rehash what happened over a glass of wine post-meeting. Find a COPAA trained advocate here. Your advocate could be a neighbor or good friend too.
2. Demand more than the fast-food version of the IEP process: My favorite quote of 2017 comes from Chief Justice John Roberts in the Endrew F.  decision: “The IEP is not a form.” Simply put, the IEP is actually a living document. You have the right to change it and ask for more than what your state form requires. Ask a lot of “but why?” questions. Demand answers in writing. Keep reminding your child’s IEP team of the “I” in IEP.
3. Write it down: Especially if you think you’ll be emotional at an IEP meeting, it’s imperative to have the meeting recorded via video or note form. An advocate can write notes for you. Remember, if your concerns are NOT put on the record, they don’t exist. A verbal concern is lost forever in the IEP abyss. Make sure everything is on record and in your child’s IEP. You can add attachments to your child’s IEP at any time. Often an IEP overwhelmingly becomes the perspective of the school personnel. Interject your concerns in an official way, and leave the tears at the IEP table. Those recorded concerns will make a lasting impact, and creates a paper trail.

What are your concerns going into your child’s next IEP meeting? How do you prepare? Tell me about it below.