Saturday, July 18, 2009

Just wanted to get this off my chest....

Okay, we've known about Ben's deafness since shortly after he was born. And right from the start, it was, naturally, a Concern and a Source of Anxiety. Meaning that we were (and still are) often concerned and anxious about his well-being and his future, on account of his being deaf and all. Now, almost 21 months later, we are very excited that he is developing so well, and this has relieved many of our concerns. But not all of them.

And you know what? I'm allowed to be concerned. It's okay. And most of my concerns are well-grounded and completely rational. And it's not the same stuff that all parents go through. It's just not.

I bring this up because frequently, when I voice these concerns, I am given the fairly explicit response (by people who are trying to reassure me -- and themselves) that my concerns are groundless, exaggerated, needless, counterproductive, or that what I'm dealing with is just a normal parenting thing, rather than a deaf parenting thing.

Yes, most of what we deal with on a daily basis is normal parenting stuff. And yes, even parents of typical kids face the fear of the unknown, and the typical kid today could suddenly go deaf tomorrow (or get cancer or get hit by a car -- y'all know the sorts of scenarios that play through our parental heads). Yeah. But (I always want to say in response) your kid isn't deaf today, and almost certainly won't be tomorrow. Mine is. And it is an issue, thank you very much. And I am permitted to consider all aspects of this fact, including the less-than-rosy ones, to keep an eye out for possible problems and to try to trouble-shoot problems when they arise, to think about the future and to consider ways of handling problems down the line. And I'm not being self-indulgent or self-pitying or obsessive when I do this. I'm being a concerned, watchful, practical parent of a child whose health and well-being are my biggest responsibility. Thank you very much.

Just a little vent. Hope you don't mind.


23 Weekers said...

Amen. I think any mother that has a child with a difference has the right to be concerned about the future of her child. We all want the best for our children.


susannah said...

amen was my response as well but 23 weekers beat me to it! to amen and amen.

Cindy said...

In my experience, people who dismiss concerns are well-intentioned, but it's more about their discomfort with difference. You're absolutely right to anticipate the challenges that deafness will present your son. You're right to address it, embrace it, and help him develop a positive attitude toward it. And that's why it's nice to have a forum like Deaf Village where you can vent and people WILL get it instead of trying to dismiss your concerns.

And speaking of helping your kid develop a positive self-concept, may I recommend the book Moses Goes to School? My five-year-old son wears bilateral HAs and LOVES this book. Every time John tells Moses that he got new hearing aids, Caleb responds with, "Just like me!" Gotta love it.

Hang in there!

Jennifer said...

Just came across your blog and had to comment on this post. As a Mom to a deaf child who is two years post implant I can totally relate to your post. No one really gets it except others who have walked in your shoes. The worries never end. My son is one of a set of triplets and having two other typical hearing children of the same age is awesome for him but can lead to lots of comparisons. My son is doing amazing and is starting mainstream preschool in the fall with his brothers. He tests at age appropriate levels and above BUT it's not like he is "cured" like many believe. It's a continuous process that I am not sure if will ever end.

Ericka said...

I get this all the time. I have 2 children who are HOH and 1 that has learning disabilities. I'm always getting the "oh they can hear just fine" and "I couldn't spell or write in elementary school either". They just don't understand.

Lydia said...

I still get similar comments from my son's friend's mom. She sees him at her home playing with her son under very ideal one-on-one circumstances, and she doesn't see any issues with his hearing, so wonders why he needs things like captions at school. But it's different in school, and I want to be sure he gets everything so he can learn and doesn't just sit through educational videos he can't hear clearly because there is background music or a cartoony or accented voice.

I don't even know how it comes up in conversation, but occasionally it does. I guess the bottom line is I hate being made to feel like my mentioning these things is trivial or unimportant, or to feel like I have to defend his need for some accommodations or just his deafness, period.

I think Cindy is on to something when she says it's about other people's discomfort.

Melanie said...

Exactly what Jennifer said!

leah said...

Cindy's right- people who dismiss your concerns are uncomfortable with difference. The proverbial elephant in the playroom.

I know this because I have one child without any "differences" and one who has a permanent risk factor to his language. Sure, my older son had a severe speech delay, but without any permanent problem he has gone past it and the worry was never the same as it is with my little one, who will have to struggle on a daily basis to listen and get information.

Worry can be a good thing. It keeps you on your toes, it makes you advocate for the right services and supports. As long as it isn't paralyzing fear, it can propel you into action to provide your child with every opportunity and resource.

rouchi said...

Nobody except a mom and that too a mom of a special needs child can understand what you say.We are all overcautious, skeptical, over protective, insecure yet confident,concerned, gutsy, intuitive and I feel we have a right to be.So go ahead , we too second your thoughts.

Elsie Wilson said...

We are, of course, delighted with Ben's growth, development and how his CI has helped him! I am delighted and proud of how Julia and Neil have nurtured him since his birth, on matters of hearing/lack of, CI, language modeling etc. etc.
But, from years of teaching children who fit the "norm" and those who have some special need, I know that it is very healthy and very good to have "concerns", issues, and to openly be able to express them. Some may, in the future, turn out to be unnecessary, but some will prove to be justified and will lead to seeing that the child's needs are met. You can't let it take over you life or become a weight around the child's neck....But, it is part of parenting! The healthy way to deal with them is not to bury them, or sweep them under the rug, but openly deal with them.
This and other blogs are one of the great ways to be open about a child's needs and to seek help, to seek support!
Way to go, Julia!
BTW: I'm Julia's MOM!