My husband and I welcomed twins last year in March. Halfway through my third pregnancy we were informed baby number three (our last attempt for a boy) was actually baby number three AND four, and we were shocked. What was just a normal pregnancy, albeit one in which I was far more exhausted than I’d ever been (though I thought that was because I already had to keeping me so busy), suddenly became a barrage of worries and what-ifs and fears. A simple delivery turned into something that had to be done in the operating room no matter what. The threat of a C-Section was suddenly a very real possibility, the possibility of premature labor and babies in the NICU was very real. Birth defects, health issues and developmental delays were suddenly things we discussed at length, because they’re more common in twin pregnancies. We were scared.
And when our twins were born just 6 hours shy of 37 weeks and still had to spend a week in the NICU thanks to their small sizes and respiratory struggles, we were even more worried. We held our breath until we were able to come home, and even then we were only able to breathe for a short second. It was approximately 8 weeks after we’d arrived home with our one-week-old babies that we received notice in the mail stating our son had failed his hearing tests and needed to have more in-depth testing performed (do not even get me started on the fact that we asked about the hearing tests for him in the hospital after receiving our daughter’s passing results and were told, “No news is good news!” and it was let go at that by the staff who NEVER INFORMED US). Fast forward a trip to the pediatrician and a referral to a children’s hospital that specializes in infants with disabilities, and we were paranoid. Paranoid. Our son was potentially deaf. We felt somehow responsible for this (should we have demanded papers of his test results in the hospital even though they told us that since we received Charlotte’s and not Carter’s probably just meant an oversight, but that they’d definitely inform us if he’d failed?). Our son was deaf; we knew it.
We woke up the morning of his appointment terrified. We held hands throughout the test, even though it meant feeding our infant son until he slept soundly in my husband’s arms while they attached a number of wires to his head and proceeded to spend hours testing him. The result; mild hearing loss in both ears. The moment is one I will never forget. Relief that he was not deaf and that his issues could be fixed; sadness that he would live his life with a disability and fear that he would be treated differently than his sisters and peers.
The doctor informed us that our son did have significant fluid build-up behind his ear drum that there was a very good chance that his hearing loss was due to that, but we just wouldn’t know until it drained and he was re-tested. We were then referred to a major medical facility an hour from our home (one of the best in the country, thank goodness) where we proceeded to spend a day every month for the next year. To make this already long story a bit shorter, our son is not deaf. His hearing is improving every day and it is almost completely where it needs to be thanks to the fluid build up behind his ear drums draining on its own. We were given many options, and we chose this one. Thankfully, allowing the fluid to drain naturally has been wonderful for him. He’s now just shy of 15 months and he’s a talker who seems to have no issues with his speech, his hearing or his vocabulary. He likes to hum and sing and he loves to cover his eyes and scream, “Peek-a-boo,” and call my name repeatedly for no reason other than to get my attention so that I can look at him and he smiles. He’s filled with new words every day and he just amazes us.
We are eternally thankful that he is all right and does not require any medical intervention to help with his hearing or speech, but there was a time in which we spent nearly a year believing he would. We were prepared to raise a child with a disability, and we spent many hours figuring out how to handle it, how to deal with the questions and the comments, and the ignorance from strangers, well-meaning friends and family and everyone else. And with that said, we’ve come up with a long list of things you just shouldn’t say to someone who’s child lives with any disabilities or special needs simply because sometimes what you say is ignorant and hurtful.
It could be worse…
Yes, it could be worse, but that doesn’t make it good. I cannot tell you how many people uttered that phrase to us when we told them our son tested mildly deaf in both ears. “Well, it could be worse…he could be blind or missing a limb,” they said. We get that they were looking to make us feel better about the situation, but what a hurtful thing to say (especially since some kids really are blind or have no limbs).
He/she looks so normal!
As opposed to….what? Looking like an animal? What does this even mean? I’m sure you mean well, but it comes across as hurtful and ignorant.
Will he/she grow out of it?
Well, let me see; thankfully our son did sort of grow out of his issues, but other kids don’t grow out of things. For example, autistic children do not grow out of their special needs; autism does not ‘go away’ with age.
Does he or she have a gift?
It’s a well-known fact that having a child with special needs sometimes means that your child is particularly gifted in a specific area of life, but not all special needs work this way. So no, many children are not musical prodigies or math geniuses simply because they have special needs, and asking this might make them or their parents feel even worse than they might already feel.
Do you wish you’d known sooner?
Well, let’s see; if a parent had known sooner that their child was autistic, for example, what would that accomplish, exactly? Would it make them more likely to begin working with their child’s special need sooner, sure. But what it sounds like is this, “Do you wish you would have known sooner so you could have terminated your pregnancy or considered adoption?”
I couldn’t do it
This one is not all that bad, but it does make those who have kids with special needs chuckle a bit. For one, no one knows what they are capable of until they have no choice, and two – they hear this all the time. They’re just doing what they have to do to care for their kids, and you’d do the same.
I’m so glad my kids are normal!
Listen; everyone knows that, and everyone wishes that their kids would grow up ‘normal’ rather than with a disability or a special need, but that doesn’t change anything. And it also sounds rude, ignorant and downright snotty to say it out loud. We know; everyone knows.
Was it something you did during your pregnancy?
Some birth defects and health issues are caused by complications with pregnancy or even the things that a mother did when pregnant (let’s think drinking, drugs or the like) but that does not mean mothers are to blame for their kids’ special needs, and it is never in any way appropriate to try and pin the blame on the parent whether it is her fault or not. Chances are good she already feels responsible even if she should not.
God has special plans, apparently
It’s a comment meant to sound nice and come across as sincere, but it can rub some mothers the wrong way. It’s the kind of comment that sounds more like, “I can’t think of anything nice to say and I’m just so thankful I don’t have a kid with your kid’s issues, so I’m just going to say that God had a plan and make myself feel better about being involved in this conversation in the first place,” and not at all sincere.
Poor thing is going to have such a rough time in school
One of my biggest fears was the way my son would be treated if he were to need two hearing aids, as we discussed with the specialist when determining our options if the fluid behind our son’s ear drum was not the cause of his hearing issues. Parents worry about this on a daily basis – along with a million other things – and pointing it out to them only makes the situation worse. Why not focus on teaching your own kids not to judge or disrespect others who might be ‘different’ so that parents with children who do have special needs have one less thing to worry about when it comes to their children?
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