Siblings of Special Needs Kids

A few weeks ago, this article was circulating- a letter to siblings of special needs kids telling them how amazing they are. It really is a feel-good, idealistic letter, and contains everything I hope and pray for Charlotte as she grows up in a family with a unique sibling situation.

Then I read the comments. Never read the comments. While there are many parents and siblings of special needs kids who absolutely loved the article, there were of course those who hated it- who felt it was unrealistic and didn’t address the real challenges faced in these sibling relationships. There are a lot of comments from siblings who grew up to suffer from anxiety and depression, and who felt “invisible” in their families. To be honest, it shocked me and kind of made me feel sick to my stomach.

At this point, I can’t imagine Charlotte feeling invisible. She is the opposite of invisible. If anything she demands and gets WAY more attention than her brother. She gets at least 6 hours a day of one-on-one time with me while Grayson is at school, and even we are all home, it’s the Charlotte Show. I know part of it is her age, and part of it is her outgoing, energetic, sociable personality.

Charlotte adores her brother, and anticipates what he needs. Just this afternoon, the first thing she did when we got home from school pickup was bring Grayson his ipad, his chew-stick, and a blanket in case he got sick. She really does have a tender heart towards him.

Case in point: I mean…have you ever seen anything so sweet?

[youtube https://www.youtube.com/watch?v=pFNBu_Vvb0E?feature=player_detailpage]
But this sweetness is not every minute of the day. Lately, I’ve started noticing jealousy creeping in. She doesn’t like me (or anyone) paying attention to G and not her. Any toy/ipad/instrument that we try to engage him with, she wants. There are tantrums, and sometimes, even physical aggression towards her brother. Again, I realize this is an age thing and would be happening even if Grayson was a typical kid. But it brings up a point made by some of those commenters- siblings of special needs kids are still just kids. They aren’t heroes, or saints, or martyrs. They didn’t ask to be in this situation, and aren’t going to grow up to be extraordinary human beings just because of the home they grow up in.

It makes me, and I think most special needs parents, uncomfortable when people call me Super-Mom or tell me they have no idea how I do it or that they could never do it. Yeah, you could. There’s nothing special about me- I just love my kid and do what I can to give him a good life. Same with Charlotte. Yes, I hope the experience of growing up seeing what she does and will see in the future will give her an appreciation for life, an empathetic heart, and a desire to serve others, but I don’t want her to feel added pressure or expectations because of who her brother is. And I never want her to feel invisible or that she matters less because she is healthy and will have less physical needs as time passes.

It’s hard for me to imagine how Charlotte’s life and personality will really be shaped by her role as a special needs sibling, and it’s scary to think that the experience could affect her in a really negative way. But just like everything else, I’ll take it one day at a time, pray a lot, and treasure the moments of the special bond these two share.

6 Comments

  1. Noemi James on January 7, 2015 at 6:04 am

    Wow, the comments on that article were… all over the map actually. There was a surprising amount of vitriol spewing on that post, from both sides. I think it's really interesting when people are unable or unwilling to validate someone else's point of view (and please know that I recognize that some of those were just trolls making life miserable for others). I guess in situations where emotions run high that is to be expected.

    As the mother of two kids I know what it is like to try (and fail miserably) to give my kids equal attention. When my son is awake he constantly needs supervision or he will hurt himself. He's constantly climbing precariously placed furniture or pitching himself head first off of something high. It's really hard to spend quality time with my daughter when my son is awake, and I know that is hard for her. I try to make it up to her when he is asleep but there are only so many hours in the day. I guess all this to say, it's impossible to give kids equal attention even when neither has special needs, I can only imagine how hard it is when one child has so many more needs than a typical child.

    I'm sure it's hard to hear that some siblings had negative experiences growing with family members with special needs, but remember that some siblings who grew up with family members who didn't have special needs have a hard time. No situation has a guaranteed outcome and you are doing the best you can loving and caring for both your kids in the unique ways each needs. Your kids are lucky to have a mother who is as worried for them as you are. If anyone can ensure that both their kids are getting the time and attention they need, it's you.

  2. Brittnie on January 7, 2015 at 1:09 pm

    “There's nothing special about me- I just love my kid and do what I can to give him a good life.” – Amen to this.

    Love the video of Charlotte helping with the iPad. 🙂

  3. My Vegas on January 7, 2015 at 5:15 pm

    I just love the sibling love in this video!

  4. Jos on January 8, 2015 at 4:28 pm

    I can't even click over and read the comments. I never read comments anymore. People are ridiculous.

    That video – my heart – oh my. I love it!
    I'm glad you can see that the jealousy and tantrums would happen regardless of Grayson's special needs status. Toddles are crazy little beasts. 🙂

    I hope and pray that Charlotte doesn't feel any long term negative issues from the specific conditions of her childhood, and I seriously doubt she will. You are doing a fantastic job with both of your children.

  5. Down On The Farm on January 8, 2015 at 10:29 pm

    You know, I pray a LOT for Grayson, but shame on me, I don't pray for Charlotte. I will add her to my prayer list. Bottom line, as a parent, you DO THE BEST YOU CAN AT THE TIME. That's it. That's all you can do. YOU DO YOUR BEST AND YOU SHOW THEM LOVE AND POINT THEIR HEARTS TO JESUS!!! If you're doing then, then you are doing your best!!

  6. Karen on January 11, 2015 at 3:17 am

    Love your perspective, and I totally agree! PS that last picture, they look so much alike! Beautiful, beautiful children and mom! 🙂

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