We recently became parents to a special needs child.
No, we didn’t have a new baby or adopt; it’s the needs that are new, not the human.
Long story short, after a pretty complicated bout with a virus, our 5-year-old was diagnosed with PANDAS (Google it), a controversial diagnosis for the symptoms of OCD, anxiety and a complex tic disorder that develop in some children following strep throat.
Let’s ignore the controversial part of this whole thing for now (don’t worry, we will get to it one day), and focus on the OCD and the anxiety and the tics, because, controversial or not, they exist.
Just this morning I set up a meeting with my son’s school principal to create the legal document that is meant to inform and guide the school for children who have medical diseases and disorders. We’ve spent countless hours at Children’s National Hospital talking through his symptoms with specialists of all types. He’s been through mildly invasive testing. He’s had more blood draws than I can even begin to count. He’s been prescribed medications to treat his symptoms, and he’s spent the last four weeks in therapy.
This is our life now.
As we are learning to live this new type of normal, there are so many things that I have learned. As a parent, as a woman, as a freaking human being. Things that I wish I would’ve taken the time to consider before, things I can’t even pretend not to notice anymore, things that I want other people to know so they don’t have to wake up one day and feel guilty, or foolish, or ugly, or mean.
Five Things You Shouldn’t Say to Parents of Special Needs Children
1. At least it’s not … (insert potentially fatal disease of your choice here).
You know, I get it, things could be so much worse. My son doesn’t have a fatal illness, he isn’t physically impaired or suffering physical pain because of his disease, we expect him to live a long life. And we are grateful daily for this blessing. But he has immense challenges. His mind is tormented, daily, constantly, even while he sleeps, because of his disease. He lives in fear. He can’t experience some things that other children get to. And chances are he won’t ever be cured.
2. He seems so normal.
He is! He likes to play outside with his friends and he gets into fights with his brothers. He cries when he skins his knees. He is excited about learning to read. His favorite show is Good Luck Charlie and he likes to play Temple Run on his iPad. He. Is. Normal. Having an illness or a challenge doesn’t make you UN-normal. It just makes you different, something all of us sort of are anyway, right?
3. This must be so hard for you.
Yep, on my list of things that suck, him having to experience this is pretty far up there toward the top. But, honestly, it’s not even about me. I’m not the one who can’t stop looking at my hands every eight seconds. I’m not the one who can’t fall asleep at night because it takes my body a while to calm down and stop jerking, or because I’m afraid of the nightmares. I don’t have to miss out on birthday parties and play dates because the fear of being away from my parents or trying something new is crippling me. And I don’t wet my pants in public because the fear and the anxiety make me lose control of my bladder. This is his struggle. I am just here to support him, encourage him and advocate for him when he needs me to, and, honestly, doing those things is easy.
4. Do you think he’s faking? Or wants attention?
No. Just no. Just because you can’t see it, understand it, doesn’t mean it’s not real. And 5-year-olds don’t want attention this badly. No one does.
5. I remember when Johnny was young, he used to …
When I tell you that my child has an autoimmune disease that causes him to behave inappropriately, experience intense anxiety or exhibit uncontrollable complex gross motor tics, it’s not really the same thing as when little Johnny used to eat Playdoh or smell his food before he’d eat it. This is different. It’s not going to go away and it isn’t a developmental quirk experienced by many children his age. Honestly, it’s a little bit insulting that you would think that. Like I haven’t explored every single medical option available to help my child, or that I am just so neurotic, I can’t tell the difference between those behaviors that are within the norm and those being exhibited by my child. When I tell you I have a special needs child, it doesn’t mean he’s emotionally needy or likes to take his time in the mornings, it means he has a diagnosed medical condition that is causing him to behave in a way that is outside the norm of children at his developmental age. He won’t get better if I spank him, he won’t get better if I ignore it, and he isn’t doing it because he wants attention. There’s just more to it than that.
(You can read more about what happened to Dude #3 here: Real Talk on Strep Throat.)
Special Needs Parents—what would you add to this list?