As a parent of a child with special needs, I pay a lot of money to provide the services that she needs to be successful in school. A lot.
A lot of money, and energy, and time, and lawyers, and researching, and fighting schools, and feeling like I don't know what the heck I am doing! I'm basically so stressed out all the time, that I sometimes struggle to meet my child where she is.
In spite of the struggles, I realize how lucky and blessed I am to be able, however barely, to:
- Get an early diagnosis.
- Access quality health care that will provide specialists for my child—in-network— who aren't far from our home.
- Use my graduate degree and years of experience working with bureaucracy to help me understand the shitstorm that is special education in public schools.
- Secure a lawyer to help me understand special education laws and to advocate for my child at her school.
- Lean on a supportive husband and family.
- Access therapy for myself to try and manage all of the feelings.
- Rely on friends and family who are administrators, speech therapists and occupational therapists, and who can help translate some of the "lingo" I don't understand.
- Set aside enough resources to provide additional, helpful therapeutic services for my child.
- Be comfortable enough to understand, challenge and fight for my child without any self-consciousness with school administrators.
- Take advantage of the option to change school districts, move, or supplement treatments.
Why am I sharing all this?
Well, it’s back to school time, and with it comes all the "to-do's" and "suggestions for parents" that make HUGE assumptions. Assumptions about parents, about kids, and most importantly, about the causes, symptoms, treatments and solutions for children who are "misbehaving."
The big assumption being, that if a child is misbehaving, especially if that child is Black or Brown, it is because of poverty, lack of structure, lack of self-discipline, uneducated parents, or my favorite stereotype, lazy parents.
And, I'm so sorry that parents who are already dealing with a terrible situation have to fight wrongful judgment, shame and bad treatment at schools—having a child labeled "bad" or "naughty"—and counter the false logic that it is because "you are a bad parent," when what you should be doing is getting your child evaluated to see if they have special needs.
I am convinced that so many poor, Black and Brown children who are labeled "bad" or who do poorly in school have not been properly diagnosed for special needs.
- I know what it feels like to be wrongly judged as a "bad parent" because of the behavior of your child. I know what it feels like, the shame, to have a school call you to pick up your child because they are misbehaving. Even if you know your child can't help it. There is something so shameful about picking up your child--in our case, our 3-year-old!--from the principal's office.
- I know what it feels like to attend school meetings or IEP meetings—with 10-plus school administrators—and not understand one thing that they are saying because of the "lingo" and acronyms. Even with a graduate degree and, what I would like to believe, is moderate intelligence.
- I know what it feels like to wish desperately that you could punish, spank or yell at your child and it would magically make their special needs go away.
- I know what it feels like to have friends, family and strangers tell you that your child's problem is that you don't punish, spank or discipline them enough.
Even with all the resources I have at my disposal, this process still really fucking sucks. So much.
I believe God wants us to help one another. So, I'm hoping that my rant—and my experiences—can help someone as they prepare for the shitty process that is educating a child with special needs.
It's a hard job being a parent of a child with special needs. It's frustrating for any parent who has to deal with it—even parents with resources.
I believe we should be doing more to educate parents about signs, to provide low-cost or free therapy for all children who have special needs and that those resources should be in a location and available during a time that is accessible to working parents. Finally, I believe that you shouldn't need a fucking lawyer or service to explain to you, as a parent, your children's legal rights to services.
It's heartbreaking, for me, to try to make sure I am doing the right thing. I still get lost and I need people to explain things to me. I wouldn't wish this on my worst enemy.
No one—NO ONE—with a child with special needs should have to jump through all of these hoops to give their child the services they need to be successful. No one.