As a mother, I think feeling guilty often comes with the territory. When dealing with discovering your child has a hearing loss - and you didn’t even know it for some time – these feelings can often surge up to al all time high. At least they did for me back in 2001, when we realized AC had a hearing loss.
As I mention on the “background page“, AC was probably born with mild/mod hearing loss, but, we didn’t know it until he was 4 years old. Once we were LOOKING for it, there were signs everywhere… but, up until that point, we really had NO clue.
This is an email I found that I had written to a friend back then… I thought I’d share:
Date: 8 March 2001, at 9:11 p.m.Dear ____;I am sitting here feeling like a total ass…
I was cleaning stuff off my puter.. and I came across some old emails I wrote to my cousin. I thought it would be fun to look back, until I came across the one below from 5/2000 and, I just feel terrible… and I just needed to vent…
Here is the email:
Date: 11 May 2000, at 2:57 p.m.Dear Cuz,
…. AC is 3 1/2 now… and doing great, but lately, has been very trying. He has learned how to tune me out. Sometimes, I think he’s going deaf, but I know he’s just ignoring me. I feel like I’m constantly repeating myself or raising my voice after saying something umpteen times. And, as soon as I say “don’t do (whatever) again”.. he does it again!… ugh!
But, all in all, he’s a sweetheart and a very good boy. Hubby says he is a ”mama’s boy”, and while I don’t know about that, I do know that he makes it very clear that he loves his mama. =) Lately, he picks me dandelions every time he see’s them… and then smiles from ear to ear… saying “you like those? Smell them! I picked those for YOU!”…and he will grab my face with two hands and tell me “I always love you”. I think, that’s cause I tried to explain to him that even if I get mad , or if he goes in time out, I still always love him…
I often wonder how long his admiration for me will last, and so I will try to enjoy it as much as possible now.…..
I read this, and all I could think was – “HOW could I have NOT realized he DID have a hearing problem!?! How could I have dismissed these comments I made so nonchalantly?? “
I’m sure my writing this here wasn’t the only time I must’ve made comments like that to people… and yet.. when his pediatrician asked me a month ago at his 4 yr check-up, “have you ever thought he might have a hearing problem”… I was shocked… and said “no”. I never seriously thought he did! I didn’t even remember writing those things to my cousin… but, obviously I DID notice… and I dismissed it as being “normal kid stuff”…
Yup. I remember writing that.. and finding the other older note… and feeling just terrible. Of course, doctors, and relatives, and friends all told me that THEY also missed it… and it wasn’t my fault… but, you know?… it was still pretty hard to take.
Somehow, we mothers think that we should know everything about our own babies… even if it’s medical stuff that’s way over our head or things we never even heard about. I mean, I knew nothing about hearing loss or any history of it in my family…. yet, somehow, I really felt I should have caught this. I still sort of feel like that. I still can’t believe I didn’t know.
In our case, AC was doing very well developmentally – and reached all his milestones ahead of time or in time. This was part of the reason it was never noticed. His saying “what” or “not listening” was just dismissed as “typical little boy” behavior. He never had any ear infections… not one. It wasn’t until his pre-k teacher mentioned his speech was a little off that anything was ever mentioned as being “off” about him. And even she didn’t mention his hearing as the potential culprit.
Learning that he had a hearing loss was difficult – mostly because there is so much we didn’t understand or know…. but there was a lot to it. It was overwhelming. The not knowing for so long definitely had an impact too.
I think, for me, what made me feel the worst, was that we had scolded him for “not listening” when he couldn’t help it… but, even worse was that I worried about what had he missed that we never knew he missed? Like how many times had I whispered “I love you” to him when he was a baby, that he never heard??? That killed me. I talked about this in a post called “Silent Whispers…“. I also mentioned how parents feel guilty and can over compensate with too much “positive coping” in a post called, “Acknowledging the needs of children with mild hearing loss…“
I’m just glad that now days, they test hearing on newborns… When I had AC, that was not the case in NY. Our Pediatrician was as dumbfounded as everyone else when we learned of AC’s hearing loss 4 years later - and she said, “see? now, AC is THE POSTER CHILD for WHY they should test EVERY NEWBORN.” I suppose it’s never easy to hear a diagnosis for your child for anything perceived as a “problem” – regardless of what that diagnosis is, or when it’s heard. In our case, really, it all worked out. AC really is just fine. Yes, he has hearing loss – but, he’s still just fine. Still, I do wish I had known earlier… and, I am glad that it seems most families do know earlier now.
As for the guilt? I realized eventually that most mom’s tend to take on guilt for something or other, and often for things out of our control. I also reminded myself that it didn’t do any good to feel guilty about the time I didn’t know yet about AC’s hearing loss. All I could do was to learn what I could, and do my best moving forward.
Of course, that doesn’t always work either. Seems like there’s always something to feel guilty about… and, maybe that is just part of being a mom? Or maybe it’s just me?! lol Either way, I guess, I will probably continue to lose the “mother of the year award”… *sigh* ;)
Filed under: child hearing loss, diagnosed, early diagnosis, grieving, guilt, hearing aids, hearing loss, labeling, late diagnosis, mild hearing loss, moderate hearing loss, positive coping, stigma Tagged: | Hard of Hearing, hearing loss, stigma