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Don’t Say it Unless You Mean It:  Special Needs Parenting

Don’t Say it Unless You Mean It:  Special Needs Parenting

“Let’s go to the mall and you can walk him around in the wheelchair.” “I’m here for you, call me if you need me to get you a gallon of milk…. or something.”

But then what happens? You guessed it we never hear back, and if we initiate contact, well we’re either put off or something came up or they will be perpetually busy until the end of time.

Those types of social responses are usually more to benefit the person saying them than the person they are intended for.

It simply sounds good in the moment. Yes, I’m here for you - but not really.

It’s something that is said to pacify a moment, usually an awkward moment that makes another person, whether it be a friend, acquaintance, family member or even a stranger feel better about the fact that they don’t know how to incorporate you and your child with special needs into their world.

What they fail to realize is if you extend these types of verbal offers that many of us do hope you’ll follow through.

Our days can be such messy chaos that we’re itching for an opportunity for a cup of coffee and conversation that likely has nothing to do with our special needs life.

We want someone just to say hey let’s have a warm drink and chat about how the weather just sucks and my yard is so saturated it’s literally a swamp.

Simple, harmless conversation that doesn’t at all make you feel uncomfortable.

We will spare you the conversation about the appeals forms we’re filling out, and how SSI wants all their money back, and how we only got two hours of sleep because we fail to know to how to comfort our non-verbal child, or why he threw up because he can’t stand the sight of strangers, or cried when I had to leave him in grandma’s arms just to go to the store for 20 minutes because I had nothing to feed my family.

We won’t tell you about any of that.

Because we know that would certainly guarantee that we’d never be extended a second invite to get together.

While it would be genuinely nice if others took an interest in those things, we know that those are typically our crosses to bear behind closed doors.

The unspoken life of a special needs family that no one really wants to dive into, digest or discuss.

Sure, life can get busy for any of us, special needs or not, and sometimes things have to be rescheduled or postponed. There is no one better who understands that than a special needs parent.

But to continually make these kinds of offers when we all know better starts to feel a bit insulting.

If you really don’t want to do coffee - that’s okay.

If you think it would awkward for your typical child to play with my child in a wheelchair - that’s okay.

If it would be boring for you to walk around the mall while I try to soothe my irritable child with special needs - that’s okay.

If it would be an inconvenience for you to help me get an item from the store - that’s okay.

Just don’t say it unless you mean it.

Take a cue from my youngest child, and just say: “see you later alligator”, and you can say: “after a while crocodile.”

See it works, no expectations on anyone’s part.

And if all else fails you can always respond.

“Don’t say it unless you mean it.”

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Claire Smyth

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