7 Comments I Wish People Would Not Say as I Parent Children With Unique Needs (and What to Say Instead)

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

My children were born with needs that are 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 more challenging.

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

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

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

I get it. Sometimes knowing what to say escapes people (insert-foot-into-mouth). I’ve been there, too.   

I’ve learned to shake off some comments, giving people the benefit of the doubt. However, there are also things that hurt.

I wish people would think before they say:

1. He/she will grow out of it.

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

2. My child uses selective hearing, too. 

I understand most people try to empathize. But 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 a completely different 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.

3. I could never do what you do.

Honestly, there’s been days I’ve felt like I can’t 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 unique. Truth is, parenting is challenging, right?

4. 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. 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.

5. God gave you this because he knew you could handle it.

I whole-heartedly disagree. I don’t believe God gave this to me. I believe He designed my kids through Him — in Him.

6. 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 it is not the same. However, losing your hearing, at any age, can be quite isolating and difficult, and is far from funny.  I’ll just leave it at that.

7. 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 mother of kids with disabilities want you to say? At least I certainly do:

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 who are happy, kind and unique.

Follow this journey at MyBattleCall.

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