5 Ways to Advocate for Your Special Needs Child

special-needs-child-advocate
Image via Amanda Rodriguez

When #3 got sick earlier this year, we were scared.

Like any parent whose child suddenly falls ill, you don’t know what to expect, and you rely on those you deem professionals to do what they are trained to do to save your baby.

Because I am informed and knowledgeable about my child’s disease, his doctors and I can be partners in creating a care plan that can work best for him.

But when things begin to change, and your child is out of imminent danger, yet still in need of assistance, your role as concerned-parent-at-the-mercy-of-the-medical-professional begins to shift, and you become parent-advocate-determined-to-ensure-your-child-gets-the-care-he-or-she-needs-and-deserves.

For parents of special needs children, this can be a lifelong commitment.  Advocating for your child can literally become your career. As someone who is new to this “profession,” I am learning a lot very quickly. Here are some things I wish I knew before I accepted this position.

How to Advocate for Your Special Needs Child:

 

Image via Amanda Rodriguez
Image via Amanda Rodriguez

1.  You don’t have to agree.

Just because the doctor says it, doesn’t mean you have to agree with it. It’s okay, encouraged, even, to get a second opinion. And if it feels wrong, it’s okay to get a third and a fourth. This doesn’t mean that you need to keep seeing doctors until one tells you what you want to hear, but it does mean that, if you are being honest with yourself about what is going on with your child, it is OK to trust your instincts and fight until someone hears you. The first neurologist we saw about our son ordered a host of invasive procedures for him to undergo. She also recommended that we put him on a steroid, but she couldn’t give us a clear reason or explain why we would want to do that. After the first procedure and another chat with our pediatrician, we decided to seek other care. 

 

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Image via Amanda Rodriguez
Image via Amanda Rodriguez

2.  Even the doctors don’t know everything.

And, if they are good, they will be up front with you about that. I cannot tell you how much I respect our pediatrician because he is forthcoming about what he knows and what he doesn’t. He’s never once guessed at a treatment plan for our son, and he always eagerly consults with specialists on our behalf. He has worked really hard to become more knowledgeable about what our son is facing, and he constantly tells us that if we speak to a doctor who doesn’t seem sure, it’s okay to look until we find one who is.

MORE: Parenting a Child with Special Needs}

 

Image via Amanda Rodriguez
Image via Amanda Rodriguez

3.  There are people who can help you.

Most conditions, even the rare, controversial types like the one my son is diagnosed with, have support groups, either in your community or online, where you can go to get more info and connect with other families in your situation. Having a support group gives you the confidence, the knowledge, and the connections to be a better advocate for your child. 

 

Image via Amanda Rodriguez
Image via Amanda Rodriguez

4.  Do your research.

The more knowledgeable you are about what is happening to your child, the more confident you will be when it comes to standing up for their care. It’s not only difficult to know what to fight for (or against) if you’re uninformed, but it also destroys your credibility with your child’s practitioners. When we go into the doctor about a new symptom my son has developed, he always starts by asking me what I think is happening because he knows that I have done everything I could to get informed on the situation before even walking into his office. And, when it’s time to talk about treatment, he tells me his thoughts and then listens to my feedback about what he recommends. Because I am informed and knowledgeable about my child’s disease, his doctors and I can be partners in creating a care plan that can work best for him.

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Image via Amanda Rodriguez
Image via Amanda Rodriguez

5.  Don’t hide.

Initially, we didn’t share our issues with many people. We disappeared into our house and spent most of our time nursing him back to health and then crying together over what was happening. One of the most beneficial things I did was to start talking about what was going on.  The outpouring of support both in my online community (thanks guys!) and in my neighborhood was amazing. People were helpful in so many ways, and having that support made focusing on him and making the right choices for his care easier. It also helped me find reliable practitioners to consult with. A friend recommended our son’s therapist to us; another friend talked us through the school/medical care process. We’ve been contacted by other families that are experiencing the same things as us because we shared with someone who had a friend who had a friend. Those connections help give you the confidence to advocate for your child, and they make it easier, too. Having someone to rant at when something goes wrong and fist bump when something goes right is an awesome thing.

Do you have a child with special needs? Do you have tips you can share? We'd love to hear from you in the comments. 

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5 Ways to Advocate for Your Special Needs Child

Amanda has been wowing the Internet since 2008 when she launched her pretty-much-useless guide for parents, parenting BY dummies. As it turns out, her parenting advice is not generally useful for more than a good laugh, but sometimes that’s exactly what you need! Amanda spends her offline time (which is embarrassingly limited) running a photography business, working as a social media director for a local magazine, writing freelance articles about stuff she loves, wrangling her 3 little Dudes ... More

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