Say This, Not That

The mom of a very special boy has some tips for engaging her family

Say This, Not That

I am a mom, an ordinary mom, of some extraordinary children. I delight in the things that all parents delight in.. like… first smiles, giggles, funny moments and accomplishments. My son is almost five, and my daughter is two. Both are incredibly gifted, talented, funny, loving, amazing children. They also have some challenges and adversity to face due to an inherited metabolic condition. My son has physical and speech challenges that make it easy to observe his differences as he is almost five and unable to sit, walk, or feed himself independently. My daughter is slightly behind her peers in her development. And while we are early on in this journey, we have learned a lot along the way.

When you see a parent with a special needs child, I have some suggestions that will make their lives a little bit brighter!

Don’t say, “What’s wrong with him?”

The simple truth is, nothing is wrong with him. To imply something is wrong is to imply that my son is less than your child/neighbor/friend etc. We all have imperfections, but that’s what humanizes each of us. He hears your question and wonders himself, “What’s wrong with me?” That in itself is dehumanizing.

Instead say, “Isn’t he adorable/ charming/ hard-working” or some other lovely compliment

He hears you and loves to hear praise. Praise motivates him and makes him stronger. Just because he may not have the vocabulary and muscular control to fully express himself, it doesn’t mean that everything you say about him isn’t being internalized. If you become my friend, you’ll hear our story eventually, and until then, it’s really none of your business.

Don’t say, “Is he walking yet?”

Understand that development is a progression. Sitting comes before pulling up, which comes before standing, which comes before walking. And there are many “baby steps” along with the way, which to you, may be “baby steps,” but to him, are milestones. When you ask, “is he walking yet?” you disregard our milestones inadvertently.

Instead say, “What cool tricks has he learned?”

This opens up the door for me to tell you some amazing thing, like my three year old held his crayon for about a minute and scribbled, or that he fed himself a french fry. These are truly amazing things that I want to brag out… because who doesn’t enjoy bragging about their child? And I’m very proud of him and know the hard work he has put into his achievements.

Don’t say, “I’m so sorry”

This puts us in a position of having to reassure and comfort you. This is not helpful and we don’t want your pity, and don’t deserve it.

Instead say, “Is there anything I can do to help/support him/ you/ give you a break?”

Awesome! Enough said.

Don’t say, “That child is special needs.”

Say that child HAS special needs. The needs are not the child. This is a really common one but it irks me… He is a child, not a need.

And other tips: Don’t avoid us and don’t stare

He needs socialization and play as much as any other child and maybe more. If the play-date is beyond his ability, let us be the ones to say he can’t come. Most activities can be adapted to include him and we can often help find a way. For example, he won’t be skiing anytime soon but would probably enjoy a good snow-ball fight, or sledding, or perhaps even riding an intertube down the slope. Trust me, your normally-abled children will also reap the benefits of building skills in creatively, compassion, and friendship.

Just the tip of the iceberg but hopefully these ideas gave you some food for thought!

My final thought for the moment: Don’t be so afraid to say something wrong that you avoid us altogether. It’s painful for everyone. Say what’s on your mind, be supportive, and that alone will be helpful.

Read Mellie’s bio

Mellie

Hi! I’m Melissa, but most people close to me call me Mellie. I’m a beginning runner, amateur photographer, Starbucks aficianodo and a full-time employee and commuter…read more

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About Mellie

Hi! I’m Melissa, but most people close to me call me Mellie. I’m a beginning runner, amateur photographer, Starbucks aficianodo and a full-time employee and commuter...read more More Posts

2 Comments to “Say This, Not That”

  1. Thank you Mellie. Sometimes I don’t know what to say, to bring up a disability or ignore it. This is a great help :)

  2. :) great post, mellie!

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