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

By Valli Gideons

Challenge: chal-inj ~ something that by its nature or character serves as a call to battle, contest, special effort, etc.

Raising kids is hard. Like, really, really hard. Period. Throw in a diagnosis like hearing loss and you may find yourself thinking this is not for the faint of heart.

My children were born with needs that are indeed categorized as special. I’ve never had a problem with the terms or the labels attached; They have a progressive hearing loss; Deafness; They are hard of hearing and also hearing impaired.

Because of the vestibular nature of their specific hearing loss, sensory issues have made it even more of an exacting task. But…

From the get-go we wanted them to be seen as children, first, and treated like typical kids, and perhaps we even minimized their unique needs and challenges early on.

They look like typical kids (with the exception of their devices) but that obscures the fact that they don’t hear like those with natural hearing.

Over the years, people have said things that left me scratching my head…

Though, I get it. Sometimes knowing what to say escapes people; insert-foot-into-mouth. Lord knows I’ve been there <I cringe>  I’ve learned to shake it off, giving people the benefit of the doubt. However; there are also things that that really sting.

I wish people would think before they say…

He/she will grow out of it.

No. Their loss is permanent and will not miraculously turn into natural hearing. Technology will certainly advance and their access to sound, God-willing, will continue to improve, but at the end of the day, they will still be deaf.

My child uses selective hearing, too. 

I understand that most people try to empathize and 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 the question of fatigue in children with hearing loss they found that children subjectively reported a greater level of fatigue than those with typical hearing.

She goes on to say that these kids 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.

There’s also the issue of auditory processing. It’s one thing to “hear” what is being said and completely other processes to turn it into something meaningful. Just imagine trying to make sense of a detailed conversation at a rock concert. That’s the decoding many kids with hearing loss have to do in many situations, particularly acoustically challenging ones: cafeteria, gymnasium, playground.

I could never do what you do.

Honestly, there’ve been days I’ve felt like I CAN’T do it or what’s more, don’t want to do it, either. Only, that’s not an option. I admit there have been dark times when I have wished things were different. But, then I remember. This is us.  And I wouldn’t change it.

I’ve never wanted our situation to be viewed as harder than anyone else’s. It’s just different. Even within the deaf community, each family is very unique. Truth is, parenting is challenging. Right?!

They are using their hearing as an excuse.

This one really gets to me…

Research has shown fatigue experienced by children with hearing loss is substantial, even when compared to children with other chronic health conditions, such as cancer, diabetes, and rheumatoid arthritis.

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

Yes. There are times my kids behave badly. This does make them typical. However; without proper listening breaks, rest and time to reboot, they have a hard time holding it together. Knowing the difference, as a parent, is the tricky part.

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

I whole-heartedly disagree. I don’t think God gave this to me. I am sure that He designed my kids through Him; In Him.

My (insert name) has hearing aids.

Bless his heart, but Grandpa becoming hard-of-hearing late in life and getting hearing aids, (he may likely refuse to wear), is NOT the same as being born deaf. When he takes his hearing aids off to tune out Grandma or watches TV with the volume turned ghastly high (perhaps funny to some), in our world… not-so-much. Nope. NOT the same. However; I might add, losing your hearing, at any age, can be quite isolating and difficult, and is far from funny.  I’ll just leave it at that.

Your kids have progressed because they are older and more mature now.

Perhaps. Only; this somehow seems to minimize the countless hours of therapy and the tough grind they have been through. To say they are thriving simply because they are older feels like it discounts the hard work and oversimplifies something otherwise very complex.

Ultimately…

What does a (this) mother of kids with special needs want you to say?

I SEE YOU. Not just the special part. THE WHOLE PART.

Raising kids who have a battle call is a unique way to navigate parenthood. It’s full of all-the-highs and all-the-lows.

However; I’ve learned every human has something to overcome, invisible or not. And, in the end, I want what most parents want: kids that are happy, kind, and a little uniquely special.

 

– Written with love by Valli Gideons

Author Biography:

Valli Gideons is a military bride who writes about navigating through the fog of raising kids with cochlear implants, military life and other things from the heart. You can read more from her on her blog “My Battle Call” at https://valligideons.wordpress.com/

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