5 Things NOT to Say to a Special Needs Mom

Whenever you are outside of the circumstances of a specific group of people there are always things you should and shouldn’t say.  Special needs parents are no exception to this general rule.  Simply put, things are often said out of ignorance.  Many times people say things because they don’t know what to say.  Things are also said without being thought through.  This can cause some pretty bad foot-in-mouth moments.  Unfortunately, things said out of ignorance can also lead bring heartache to the special needs parents.

I’ve been on the receiving end of this countless times.  Often times it comes from well-meaning people and even family members.  Every time I remind myself that they simply don’t understand and offer grace.  What was said was not intended to be hurtful.  The problem is no matter the intention behind what was said, the sting of the reality is still there.

In an effort to stop you from saying things before thinking them through, here are a few things you just shouldn’t say to a special needs parent.

1.  I Wish I Could Be Paid To Take Care of My Child

Ok, yes.  I am paid to be our child’s caretaker.  (MN is one of the states with this program)  But before you say that you wish you could be paid to take care of your child, think it through.  The programs that allow for this are designed for individuals who would need to go to a nursing home without in-home care.  Do you really wish your child had disabilities at a level high enough that requires nursing home level care?  I don’t think so.

To be honest, I struggled with putting Ladybug on this program.  It was a very humbling time in our lives to go through.  We tried alternatives, but they simply were not a good fit for our family.  I was missing so much work for appointments that it just needed to be done.  Saying this is demeaning to the work we do.  What you don’t realize, is most of us gave up higher paying jobs to take care of our children.  Jobs that aligned with our college degrees even.  We are doing far more than simply parenting.  Plus, we’re working much longer than the allotted hours we’re paid for.

Being paid to take care of your child is not a life goal.  It’s simply a way to help lighten the load of the burdens we bear.

2.  You’re Lucky She Can’t Tell You The Things She Wants While shopping

Really?  I’m lucky? I would give about anything to hear Ladybug tell me exactly what she wants.

Just because our children may have difficulty communicating to us their wants, doesn’t mean they don’t have opinions.  I try as often as I can to get Ladybug’s opinion as to what she likes when shopping.  It’s difficult and time-consuming.  I know she has a preference and I want her to know her opinion matters to me.

Deciding for her what clothing she would want to wear is not good for her mental health.  Our special needs kids are already dealing with enough physically.  We shouldn’t take away their feelings and opinions as well.  They deserve to be heard when it comes to their desires.

3.  Can’t You Control Her Yelling?

In a word, no.  I can promise you we’ve tried every parenting and behavioral therapy trick in the book when it comes to teaching volume control.  The hard truth is that Ladybug has a permanent brain injury.  Some things are beyond our control, this happens to be one of them.  And by the way, you can’t control everything about your children either.

I understand that random outbursts in public can be annoying to you.  As a parent, we know and we’re embarrassed by it as well.  We don’t like the unwanted attention it brings.  Saying this only makes us feel worse.  We don’t need to feel like we’ve failed as a parent, and that’s what you’re doing when you say this.  The truth is we are exhausted from all other aspects of special needs parenting.  Don’t make us feel like we’re not doing enough.

You should also try to understand what’s behind the yelling from our children.  Often times, it’s a result of frustration.  They’re frustrated that they have difficulty communicating their needs.  Sometimes the loud noises as a result of that.  Other times, it’s just plain excitement and joy.  Sometimes it’s actually them singing, and it’s beautiful to hear.

4. I Know How to Cure Her

Really?  You know how to cure her.  Considering we have a list of about 8 different doctors and 3 therapists, I highly doubt it.  Don’t say this.  Just don’t do it.  We are constantly bombarded with various medical treatment options.  We spend a lot of time researching, talking to doctors and weighing the pros and cons of each option.  Then someone walks up to us to tell us he can cure her (with some product) when they don’t even know the diagnosis.  No, sorry sir, you don’t know.

5. Just Trust God

Any variation of this statement falls into this category.  God has a plan, God will work it out, Pray about it, Just have faith, these should all be avoided.  All of these statements are of course true.  I will not deny that.  I believe them to all be true, I do pray about it, keep my faith and trust in God.  He will work everything out for our family, but it doesn’t mean it should be said.

When you say statements like this it probably means I was just pouring my heart out to you.  If I was just pouring my heart out to you, it means I’m hurting.  You’re one of the few people I have to talk to.  When we hear things like this it really just feels like you’re saying to suck it up and stop complaining.  It sounds like everything we’ve just said- our heartache, our concerns, our fears are all belittled like they’re nothing.  Or worse, it can sound like you really don’t care.  These statements can be interpreted as a brush off.

So instead of saying these things, pray for us.  Don’t just say you’ll pray for us, actually pray for us at that moment.  Be compassionate and ask questions so you can better understand.  Offer to help if you can.  Instead of saying something about trusting God, how about you practice being the hands and feet of Jesus.  Instead of saying God has a plan, ask God if you are to be a part of that plan!

In Summary

The most important thing to remember when speaking to parents of special needs children is to think before you speak.  Try to think how it would feel to be on the other end of the conversation.  Take the time to choose words wisely.  If you don’t understand, ask questions.  It’s better to be informed before giving an opinion than to say something out of ignorance.

Check out this video if you’re looking for ways to support special needs parents