cochlear implants, Entering The Fog, Other Things From The Heart, Parents of special needs kids, Things I've Learned, Uncategorized

What This Mom of Kids with Special Needs Wishes People Wouldn’t Say to Her

Raising kids is hard. Add a diagnosis of hearing loss and you might find yourself thinking parenting is not for the faint of heart.

My children were born with needs categorized as “special.” They look like typical kids (with the exception of their devices) but they don’t hear like those with natural hearing.

Understanding and information are key.

Some things I recommend people avoid saying to a parent:

• My child also uses selective hearing.

Most people want to make you feel normal, only a hearing child’s experience is not the same as one who is deaf. Sure, all kids use selective hearing from time-to-time, but kids with hearing loss experience sound much different.

According to an article written in Central Institute for the Deaf by Karen Anderson, PhD., when researchers examined fatigue in children with hearing loss they found that children reported a greater level of fatigue than those with typical hearing.

She goes on to say kids with hearing loss also exert more effort during listening tasks than their typically-hearing peers. Any degree of hearing loss, with or without amplification, requires a greater effort.

• I could never do what you do.

There are days I feel like I can’t do it or don’t want to do it. Only, that’s not an option. Throughout the years I have had moments I wished things were different. But, then I remember—this is us. And I wouldn’t change it.

• They use their hearing as an excuse.

Research shows fatigue experienced by children with hearing loss is substantial, even when compared to children with other chronic health conditions.

But, because hearing loss is invisible, the effects of fragmented hearing, listening comprehension, and fatigue are often ignored.

There are times my kids have bad behavior. This makes them typical. However; without proper listening breaks, they have a hard time regulating. Knowing the difference is the key.

• God gave you this because HE knew you could handle it.

I don’t think God gave this to me. I am sure He designed my kids perfectly imperfect.

• My (insert name) wears hearing aids.

Grandpa becoming hard-of-hearing late in life and getting hearing aids is NOT the same as being born deaf. A grown person who takes off his hearing aids to tune out Grandma (perhaps humorous to some), in our world isn’t funny. And, it’s not the same.

Losing your hearing, at any age, can be isolating and difficult, and isn’t a joke.

• Your kids have progressed because they have matured.

This minimizes the countless hours of therapy and tough grind they have been through. To say they are thriving simply because they are older discounts all their hard work and oversimplifies something otherwise complex.

We don’t have it harder than most families. I’ve learned every person has something to overcome, whether invisible or not. And, in the end, we want our kids to be happy, kind, and a little uniquely special. Ultimately, what this mother of kids with special needs want others to say:

I see you. I see your kids.

Not just the special part.

THE WHOLE PART.

Ten ways you can support a child with hearing loss on their listening journey

5 thoughts on “What This Mom of Kids with Special Needs Wishes People Wouldn’t Say to Her”

  1. Beautifully written. Thank you for sharing your journey in such a raw, honest manor… straight form the heart. Your kids are awesome! You are Awesome! Keep on being you (warrior mom). xoxo, Carrie •*¨*•.¸¸ Spread Peace and Love ¸¸.•*¨*•

  2. This is so good!
    I am a special needs mom. My middle daughter has down syndrome. This past January my other 2 kids were diagnosed with severe hearing loss. They both now wear hearing aids in both ears. My son (my baby) also want diagnosed with selective mutism. A high anxiety that the hearing loss has contributed to. I’m just beginning to learn about all the things and needs here.
    People, who mean well, can say things that just hurt and they don’t have a clue.
    I wrote a blog about it not too long ago. I shared it on a discussion and someone sent me a link to you!
    I’m so glad she did.

    You are welcome to come check out my blog
    https://godsstoriesofgrace.wixsite.com/miracles
    The one I’m thinking about is tittle “if it is strength you see”

    And my FB page
    https://facebook.com/GodsStoriesOfGraceWithCrystal

    And a group for Special Needs Moms. I just started it but I’d love a voice like yours there. As mom we all need encouragment and as special needs moms I think we can speak to that part when others can’t.
    https://m.facebook.com/groups/240360640068149?ref=bookmarks

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