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A Starting School Survival Guide for Parents of Children With Disabilities

Parents of kids with disabilities face all of the same anxieties that other parents face upon starting pre-school or kindergarten. There are also other concerns, many of which are more abstract and frightening. I've been there.
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Parents of kids with disabilities face all of the same anxieties that other parents face upon starting pre-school or kindergarten. Will my kid make friends? Will she like her teachers? Am I going to cry before I get back to the privacy of my car?

There are also other concerns, many of which are more abstract and frightening. Are the teachers going to think I'm a neglectful parent? Are they going to understand that pulling my kid out of school for therapies isn't like pulling them out to go to a movie? I've read a dozen articles about special needs children who got locked in a closet all day at school and the parents didn't find out for weeks, but they wouldn't do that here... would they?

I've been there. I have a few tips based on my experience that might help you navigate the start of school and get the best education for your child.

1) A diagnosis helps build trust with teachers. When my child started at our neighborhood public school, he was on an IEP (individual education plan) but didn't have a diagnosis. He couldn't put on his shoes and had other delays. We got a diagnosis a few months after school began. With the diagnosis, I found that the teachers were much more eager to work with me. I'm not saying that their change in attitude was right, or fair, or good. It was simply what I observed. I don't know if they thought I hadn't tried to teach my kid to don his shoes, or if the diagnosis gave them something they could understand more easily, or something else. It may be that it gave them more confidence that I was advocating for my child in good faith.

2) Be patient. The start of the school year is a whirlwind for everybody, and everyone is stressed out and trying to figure things out at warp speed. Yes, definitely advocate for your child, but you will get better results by saying to the teacher, "I have a question to discuss with you, but I realize now might not be the best time. Is it best to call? Email? Discuss after school?" Different teachers find different communication methods convenient, so you will do best to meet their requests. Always be respectful of teachers' time, and treat it as more valuable than your own. The dividends of this consideration are enormous. Plus, if you make sure the teacher knows that you are available to them, you may find that you are in a better position to advocate than the other way around.

3) Allow easy communication between all parties. I'm sure this can backfire, but I signed all forms I could get my hands on to allow my child's teachers to communicate directly with his therapists, and vice versa. I sent an email to the physical education teacher with a brief summary of his history and the contact information for his therapists, and asked her to contact me with any questions. The result, for us, was a strong network of experts who could openly communicate with each other and our family on a moment's notice. I believe everyone in this network learns from each other and benefits in ways that help not only my child, but other present and future students living with cognitive, developmental, and physical differences.

4) Find your advocates. At one point, I requested a meeting with my son's school therapist and ended up crying to her about my frustrations. Next thing I knew, she had set up a meeting with the principal and primary teachers so that we could sort things out and reach an understanding. This was very difficult and emotional, but I knew I had found an advocate. This therapist knew how and when to intervene to help a family in distress. Which leads me to:

5) Practice saying, "That won't work for us. Let's find a different solution." You don't have to be patient forever. If you've done your best to accommodate teachers and therapists, it may be necessary to communicate that you will find a different way to get your child's needs met. You're told you can't get an IEP evaluation for six months? "That won't work for us. Who can I talk to about setting up an evaluation sooner?" You are told that your child doesn't qualify for individual therapy? "That won't work for us. Can we get individual therapy half of the time, at least?" If you feel like you're beating your head against a wall, that means you haven't found your advocate yet. That's the time to say, "This isn't helping me with my child's education. Is there someone else I can talk to?" We were fortunate to find lots of support at our neighborhood school, but you may need to search for your advocates at a different school or district.

6) Know your rights. I have the right to see my child at any time, for any reason. If I have fears, rational or irrational, about my child's well-being at school, I can check on him. I have the right to keep my child's diagnosis private, although that is not what I chose to do. I have the right to request a meeting or an IEP review. I'm not an expert on the ADA, IDEA, or other federal laws regarding special needs education, so I can't say for certain what rights are guaranteed nationwide. Be sure to find out for yourself what applies to your situation. If you are looking for a particular accommodation that doesn't seem to be available, say it with me, "That won't work for us. Let's find a different solution." Make sure you are 100 percent confident about your child's safety and well-being.

Start of school will likely be difficult for your child, too, so don't forget to give them as much support as you can. Pack all of their favorite snacks. Keep the weekends low-key, or fill them with your child's favorite outings. Practice a lot of deep breathing together (even if you're the only one calmed by it).

Show your child with disabilities that you are just as dedicated to supporting her typical siblings every fall. In fact, nearly every tip listed above is just as helpful when advocating for typical children! Build relationships with teachers, and also with other caregivers, coaches, parents, and families. You'll be amazed at the people who already love your children.... ALL of your children.

Remember that special needs education has come a LONG way since we were kids. There will be tough times, but you and your child are about to find some wonderful allies and friends. Let's make it a great year!

A brief note about nomenclature: I am relatively new to the disabled advocacy community. I understand that words are inherently loaded with various meanings, and I have purposely chosen to use a mixture of the terms "disabled," "with disabilities," "special needs," and "typical," despite the problematic nature of all of them. Context is my (imperfect) guide. Here are a couple of resources for those wishing to learn more:

People First Language (Kathie Snow)

Examined Life (Judith Butler, Sunaura Taylor)