Advocating for your Special Needs Children

This week, we pick up part 3 of our four-part series on seeking help for kids with developmental delays and other special needs. Jill Hanon, our Special Needs forum moderator, shares her perspective on advocating for our children, especially in a school setting. If you missed earlier Parts, find them here:
Part 1: What to do When You Notice Developmental Delays
Part 2: When Your Children are too Old for AZEIP
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Erin: If I’m the parent of kids with IEPs, how involved should I expect to be? How much time will I need to put in to advocate for their education?

Jill: You’re going to get out what you put in. And it depends what your child’s needs are. I am super involved. There are times that I’ve requested IEP meetings because I don’t feel like there’s enough progress happening. You can always request a review in writing. There’s a specific time frame for everything. I think they have ten days to respond to you. I’m very hands on because the more I know the teachers and the therapists and everything that’s happening, the more I can carry that through for my child. You have to be their advocate for everything. If you have a child with special needs, you’re their voice a lot of times. Even if they are able to talk to their doctors as they get older, you still have to be there advocating on everything. If you don’t do it, no one is going to do it. Their teachers can only do so much, no matter how amazing and wonderful they are. And there’s only so much they can do without your specific request or approval. I’ve had situations where I’ve been sitting in an IEP meeting and teachers are staring at me meaningfully across the table like, “Ask the question!” and then afterwards they’ll come up to me and say, “I’m so glad you brought that up because I’ve been dying to say something, and I couldn’t.” There are certain things that school personnel can’t say or do unless you initiate.

Erin: What’s your advice for advocating for your special needs child?

Jill: Get to know the process as well as you can. Be willing to question the process. I’ve had to get the help of an education advocate, because I didn’t like what was happening with one of their IEPs. They were trying to kick him off before he was ready. All I had to do was throw around the name of the advocate and say we were going to meet with her, and that was enough. Sometimes you have to play hardball. I try to be gracious with the team. Because they work hard and go through a lot. But at the same time, there’s a process from their end that they have to follow.  The more you understand that process, the more you can make it work in your child’s advantage.

Erin: Do you still need DDD if your child is receiving services through their school?

Jill: It depends on the kid. They might qualify through services through DDD but not at school, because services at school are based entirely on academic performance. Like maybe they can communicate okay and ask questions at school, so they don’t qualify for speech therapy at school, but that doesn’t mean they don’t need it.  Then you become the chaos coordinator. Because you’re coordinating his 504 or IEP at school—a 504 is accommodations but not interventions and services like you get with an IEP— and doctor appointments, and DDD therapies.

Erin: Why do you need the official 504 piece of paper for accommodations when you could just informally ask the teacher to do it?

Jill: Because they are required to do it if it is on the piece of paper. And if you have more than one teacher, or you transfer, you need that. In our situation, my first grader has six or seven different teachers. So all of those teachers and administration have to adhere to that plan. Let’s say your child’s issue is ADHD. The accommodation might be putting up a folder so they don’t get distracted during a test. You might have an amazing team that knows what accommodations your child needs, but the more you know going into the meeting, the better the plan is going to be. The more benefit your child’s going to get. We’ve taken some of our DDD therapists into school meetings because they know what’s going on with our kid. The more collaboration you can have with that team, the better it will be.

Erin: Would you agree that it’s never too late to start the process?

Jill: Absolutely. If your gut tells you something, early or late, follow it. You are going to be your child’s biggest advocate. You know that child better than anybody, so follow that hunch. Even through five years of therapies and everything you can imagine, I’m still finding things with my kids that make me go, “HMMM. This isn’t working, I’ve tried everything else, the poor kid can’t read, let’s get his eyes checked.” And sure enough, there’s an issue. So it’s an ongoing process. And as one thing gets better, something else comes to the surface. A lot of things have the same symptoms, but different things are causing them, or masking them. Don’t be afraid to try different things, ask silly questions, try different doctors. Unfortunately there’s more and more families out there affected, and while we have a very long list of services available to us in Arizona, there’s a lot of people who need them. So sometimes there’s wait lists, sometimes you have to search out providers. If you’re sure something’s not right, don’t take no for an answer.

Erin: What would you advise someone like me, for whom it doesn’t come naturally to push back?

Jill: It doesn’t come naturally to me, either. I’m the wallflower when it comes to these kinds of things. But for me, it became, “If I don’t get this kid help, I don’t know what his life is going to be like.” And I have seen SO much improvement in my kids between the ages of two and six. I’ve had friends and family say, “Oh, I don’t get it.” And then they’d see them a few years later and say, “Oh my gosh!” You have to find things that work. You have to get them in therapies that are going to work for them, but it WILL work. There was a whole year where I was crying myself to sleep every night, feeling like my son was not getting better. And then it was like a light bulb went on. There’s always going to be struggle. It’s a spectrum and it’s a scale, so it depends on where you are on that, but there will be improvements, there’s something out there, and you just have to find it.

Erin: Do you have any favorite networking resources?

​For autism specifically, the autism society of greater phoenix is great. There’s a parents of special needs phoenix or east valley Facebooks page. We have the PVMOM special needs forum. People shouldn’t be afraid to join it and ask questions. And for me, even sitting in the waiting room at therapy, talking to the other parents. I’ve gotten so much information just from talking to other parents who have been through it. The autism society has a parent mentor program if your child has been recently diagnosed. Other places do it as well. They will match you up with another family that has been through the process and answer some of those initial questions. 

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