Autism Family Life Hard of Hearing/Deaf Kids Uncategorized

Not Again

If you are a parent or grandparent or even a loved one of a kid with special needs you have probably had to bite your tongue (maybe until it bled) when people react to your child or children. I’ve been circling the block for a few years and thought I would share my personal favorites (with some new ones because now we have C). Hopefully, you will chuckle and shake your head, which is what I do when I hear these statements most of the time.

My Top 5 ‘Bless Your Heart’ Phrases

  1. Your child doesn’t look like he/she has (insert condition here). – Let’s start with this one because I hear it A LOT! I know what people mean, my son speaks and some of the times looks you in the eye. He will even have physical contact with you. Of course, he goes overboard on that contact. In reality, my son does have Autism and there isn’t a specific “look”. Just like all people from Ireland don’t look like leprechauns, not all Autistic individuals are nonverbal, or refuse to look at you. It’s a spectrum, a colorful, beautiful rainbow of differently abled individuals. With E, this is more of a structural and behavioral issue.
  2. No wonder she’s so happy, she can’t hear. This one upsets me every time I hear it. In effect, the individual is saying that my baby would not be a happy baby if she could hear the world as they do. That’s not actually what anyone means, but it is definitely how it comes across. Her ears aren’t what make her happy. Some baby’s have an amazing temperament. Some baby’s are just naturally happy. Hearing the wind in the leaves makes me happy. C will never hear that. Her hearing does not and should not determine her mood.
  3. How do you know when she wakes up (see needs you)? This right here. Um… She’s Hard of Hearing, I’m not. I actually have to chuckle a bit looking back at it. Apparently because C can’t hear she can’t make noise. I will say, some Deaf and HoH people choose not to speak, but most of the time that is a choice they make not because their body is incapable of making noise.
  4. I’m so sorry. Please, do not be sorry for me or my family. When you say I am so sorry because of a disability it feels as if you are saying that having that disability is something to be mourned. That it takes away from that individual. Sure, C will always have aids attached to her head. I’m determined to help her see that it makes her unique, but unique isn’t bad. E has Autism, it just changes how he sees the world. It wasn’t all bad for Albert Einstein. Please, don’t be sorry for the cards we were dealt. I’m not. They make my life richer (and slightly more insane than I had planned.)
  5. I couldn’t do it. Truth- I said this. SO MANY TIMES. I knew a woman, an inspiration, who has a son who is severely autistic. I can remember telling my husband that I didn’t think I’d be capable of being the mom of a kid with special needs (very funny God). I didn’t see where she could come up with the strength day in and out. She was constantly advocating and I did not believe that I was capable of this.

But I AM.

In reality, nobody goes into pregnancy hoping for a kid who has special needs, who is different. I wouldn’t hope that my child’s life would be more difficult. That is insane. On the other hand, when it happens, we learn how to deal. Any parent is capable of learning how to deal. I’m not sitting here claiming it isn’t a struggle because I’m not interested in lying to you. But it is doable. My kids change me and enhance me on a daily basis. They make each other better people. If you don’t know what to say when you first learn that someone’s child has a diagnosis here are a few of the ones that meant the most to me.

  1. You are the parent that this child needs. This is paraphrase from a comment that a friend made to me when C was diagnosed. It is what helped me focus in on the fact that God gave me this blessing and I was absolutely capable. It is what I needed to hear.
  2. I’m praying for you as you navigate this.
  3. Let me know if I can help.
  4. You don’t need to say anything. Honestly, a lot of parents could benefit from friends moving on from the subject and continuing to treat them and their family as they always have.

Honestly, every parent is different, some might prefer nothing to be said. Some may want to hear I’m sorry. WE are all diverse. Here’s a list of ways to help moms with Special Needs kids. Some of the ideas are pretty interesting.

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