5 Things You Shouldn’t Say to Parents of Special Needs Children

As many of you may know, 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 five 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 4 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.

things you shouldn't say to parents of special needs children

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, in my list of things that suck, him having to experience this is pretty far up there towards the top.  But, honestly, it’s not even about me.  I’m not the one who can’t stop looking at my hands every 8 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, five 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

And, another post on how we advocate for our special needs child on Everyday Family, too.

Related Posts Plugin for WordPress, Blogger...

Comments

  1. Oh my gosh # 2 and 5 make me crazy!!!!! I cannot stand it when people tell me that my son doesn’t look like he has cerebral palsy or that he looks normal. Or the flip side when they try to pretend that it isn’t that bad because when their kid was that age they blah blah blah too.
    Great list! I would add that #6 Don’t tell them about your sister’s brother in law’s cousin has (insert special needs) and they did (insert unwanted therapy, advice, education etc) and he’s fine now. You should try it too.

  2. But hugs are still okay, right?

    I was thinking about Cady’s dyslexia today. She’s decided she wants to drop out of dance, and one of the reasons is because she has more homework in the evenings. Her official plan limits her assigned homework to 20 minutes. Last night she came home with all of these index cards for a report she is working on at school. She had to hand-write all of this bibliography information on each one. She told me she didn’t have time in class and she wants to be sure it is neat and easy to read for her teacher. It makes me sad for her that she has to try harder than the other kids to put out the same amount of work. No one else sees her struggle like that, but I do. And it hurts. And it really, really sucks.

  3. I think it would be great if you could post a list of 5 (or more) things a person SHOULD say to the parents of a special needs child. (or have you already?)

  4. You are so right about what parents don’t need to hear- about a special needs child, about any kid who is different. People spend too much time inquiring for details that are frankly none of their damn business, commenting and offering their opinions on how they think you should be handling a situation- it just makes a tough experience so much more exhausting. As if it’s not enough that you are reeling and figuring out how to navigate your new reality- you need everyone else throwing in their two cents.

    I can’t imagine how tough this is for you and your family right now- my heart is with you.

  5. People are thoughtless. It’s good that you provided some guidance. Hopefully the people that need to see it, will. Definitely food for thought for everyone.

  6. I’m sorry for all that you guys have been going through with this. Jessica ended her comment with a great suggestion.

    When Nick was diagnosed with epilepsy at 4 months old, there were so many unknowns. We didn’t know if he would ever progress beyond a 4 month old. (Brain stuff is scary shit!!) All I really wanted was people to listen to me. Not talk…just listen and hug me. When we were told that he had a 60% chance of outgrowing it, I was telling someone how defeating that sounded, and they told me I was thinking about it wrong, and that I shouldn’t ever think about it that way. It was so maddening to hear them tell me exactly how I should feel, rather than to just listen and offer support. That was a really rough time in my life.

    So…if you ever need someone to vent to, you know I’m here for you!

  7. I agree with Jessica; this list will help so many people, both parents of special needs kids and people in general. It’s hard sometimes to know what to say, and to realize that our questions/comments can be misconstrued as idiocy or ignorance. I tend to believe that most people simply don’t know what to say or that what they’re saying is offensive or downright dumb. Thank you for helping us.

  8. Amanda, your little boys have the best mommy in the world. Sending hugs and love and lots of mushy stuff. :) This is a fantastic list of things to just not say to parents of children with special needs. I wish some of my family and friends had read this list years ago!

  9. This is a great post for EVERYONE to read. Thank you for being open and honest about this, truly.

    Thinking of you and #3… xoxo

  10. Is he going to qualify for an IEP, Amanda? I’ve got 2 on IEPs–one ASD, one bipolar and it’s the best thing that’s ever happened to us, educationally speaking. But it’s a lot to wade through on the first go round.

    I know I don’t know exactly what you’re going through but my kids share many of the same symptoms and I’d be happy to chat with you or just listen if you ever need anything. Seriously grab me on fb if you ever have need.

    I’ll continue to pray for y’all. Hugs!!

  11. This makes me curious. As you know my oldest is bipolar, OCD, generalized anxiety disorder, and PTSD. But I can tell you the middle 2 did not manifest as early as the first one did. He had strep for nearly 4 straight months before having to have surgery. His kidneys acted up following nearly 4 months of antibiotics that would kill a horse on a good day. He would pop his eyelids, flip his hands, I can’t begin to name it all. It leaves me wondering were those issues caused by the Strep as well, as if the Bipolar wasn’t enough on its own. Sending you much love and hugs. You got this momma.. I have faith in you..

  12. Hugs, hugs, hugs. What a fantastic list and oh so very true. I can’t tell you how many times I had parents tell me one if not all of these things when I was working with children at CNMC.

  13. I think this post will be so valid for SO MANY moms. I’ve always found people’s need to share or comment or just say SOMETHING so bizarre. I think most of the time, whether you are dealing with a child with special needs or a child who won’t eat their vegetables, you just want another human to listen. We don’t want advice, encouragement, comisery, anecdotes, or prayers..We just want someone to listen. I think your list is great….. I might add the ONE thing you should say to the parents of a child with special needs- I am here to listen if you ever need it.