A Little Privacy, Please?
by Shannon Aronin on May 28th, 2015

When you think of the challenges of having a special needs child, you probably think caring for the child is the hardest part. It’s not. Not by a long shot. It’s other people; people at the grocery store, family, and teachers and school administrators are people who are more frustrating to deal with than my child.
 
You might imagine that the opposition, disobedience, or as schools these days like to call it “non-compliance” is the hardest part. It’s not. Isn’t that kind of a creepy way to put it anyway? Your Boo wouldn’t “comply” today. My answer is always sorry, let me know if you figure out how to fix that, mmkay?
 
But there’s something that special needs parents give up that feels downright violating. You want help for your child? Say goodbye to even the slightest pretense of privacy. First there’s the forms. Forms for school assessments, forms for independent assessments, forms forms forms! These tend to be no less than a dozen pages and there are usually several. We are talking rating scales with hundreds of questions you, and your child’s teacher, fill out endorsing mental health statements from never to always. They include essay questions. Not only do they ask how old your child was when he first looked at you (seriously. Agpar scores from birth, when they sat up, crawled, walked, talked, rolled over, started solids... So glad someone made me keep a baby book!) you have to give detailed accounts of your own medical and mental health history. This information, including my pregnancy complications in excruciating detail, winds up in assessment reports. Assessment reports get shared with 15 of your closest friends (actually fourteen people you tolerate and usually one you hate) on the child’s IEP team at school.
 
For the uninitiated, first, stop, take a second to be grateful if you do not know what an IEP is. An IEP is an individualized education plan. It is developed supposedly collaboratively by parents, teachers, administrators, therapists, doctors, nurses and anyone else you deem useful. You can call an IEP meeting anytime you please. If you think the janitor would help, you can request his presence. The IEP is a legal document and IEP meetings, which are both intimidating and emotional, are business meetings. This is a negotiation, but you may not have received the memo and accidentally thought this was actually a collaborative process of everyone working together to meet your child’s needs. The accommodations and services outlined in an IEP are a civil right and the school is breaking the law every time they violate it.
 
So now everyone knows all this about you. Then there is the fact that, if you are blessed as we are to have a child who is verbal (as opposed to many children with autism who do not speak), said child talks. To EVERYONE. He spends time with therapists and psychologists and neuropsychologists and... he is mentally ill. He has no filter. So while it is essential to run a household mostly free of any secrets or private family information, your dirty laundry is already all over town. His misinterpretation of events can lead to him saying terrible things, like I didn’t eat dinner or breakfast. To shrinks. He’s never missed a meal in his life. Deep breath, ok, whatever it takes to help my child right?
 
And then come the people into your home. In home school instructors, behaviorists, more psychologists... So, even if you are a messy family, you start coping with having company every day. But come on, I work 70 hours a week often, and my husband does too. So a lot of stuff gets shoved into bedrooms.

Now, imagine if a teacher came into your home, completely mishandled your child’s needs, starting traipsing through these messy bedrooms, and when she couldn’t find what she was looking for had to eventually be forbidden from digging through your trash with your child to find something super unimportant. This professional is here for 1 hour/day, and this is supposed to teach a child with ADHD, that the adult just started working with, to take care of his things. So that happened. Are you kidding me?
 
In the age of social media we have all become open books; I know I have. Being a special needs parent though has a way of making me crave privacy like never before. Writing this blog is therapeutic, but you’ll notice there are no pictures of messy rooms. And all of this is exhausting because on top of a full time job, you are now a human resources staff at home.
 
Special needs parents seem to be universally tired. Or weary. But it’s often not for the reasons you expect.


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