Community//

How to Provide Support to the Sibling of a Special Needs Child

An Excerpt from Butterflies and Second Chances: A Mom’s Memoir of Love and Loss

When my daughter, Caroline, was old enough to go to preschool, and started to be around other kids, I noticed she was a rather anxious child. She didn’t really play with others, preferring to be alone. She was always kind of marching to her own drummer. When I would arrive at school in the afternoon to pick her up, I’d see all the other kids on the rug, listening to story-time, and Caroline would be on the other side of the room, playing with the kitchen set on her own.

I moved her around to a lot of different schools, looking for a good fit. She was definitely a unique kid. A very serious child. I didn’t really make the connection to her older sister Elizabeth’s profound special needs though until she was about four or five. It was then that she made an offhand comment that took me aback. I don’t remember when exactly it happened, but it was definitely a Sunday. We were in Elizabeth’s bedroom and Caroline was with me. Sundays were family days: I never had a babysitter, nanny, nurse, or aide on a Sunday. Since I was a single parent, it was always just me and the girls.

Elizabeth must have already been about nine or ten at this point. She was getting big, but of course she was still in diapers. I was changing her, taking care of her g-tube and medicines, getting her dressed and ready for the day, which took a very long time. Suddenly, Caroline asked me, “Mommy, when am I going to have to start changing Elizabeth’s diapers?” I remember the moment like it was yesterday. On the one hand, I was moved by Caroline’s big heart. But I was also crushed, internally, to think that Elizabeth and her struggles were already weighing so heavy on Caroline’s heart. It wasn’t a lighthearted comment. She was looking at me with a furrowed brow, genuinely trying to figure out when it was going to become her responsibility to take care of her big sister.

I just knew that the question had been eating at Caroline. So I told her, right then and there, that she would never have to worry about that. I assured her I had a plan. I was lying through my teeth.

What I realized on that day was that I needed to start normalizing some things in the household and giving Caroline the kind of happy childhood experiences she deserved. The typical family things. First things first, I told her that I had a plan, and that she was never going to have to worry about looking after her sister. “Mommy has it all taken care of,” I said. All she needed to do was enjoy being Elizabeth’s sister.

In reality, I had no such plan. But I resolved then and there to create one. I also realized in that moment just how alone in the world we really are. Wayne (my ex-husband) wasn’t really there for us. Yes, my mother was living with us, and was very helpful. But she was getting older. She was showing signs of physical deterioration and was getting more anxious too. With Elizabeth getting older herself, my mom was having a harder time emotionally, dealing with the reality that her granddaughter wasn’t just going to “grow out of it.”

It’s a pretty common dynamic with grandparents of kids with special needs. As loving as they are, it’s just a lot easier when their grandkids are young. It’s easier to control them and to excuse their behavior. It changes when their grandkids get older.

In the case of my mom, although she was certainly a big help, I knew she wasn’t going to be part of the long-term plan with Elizabeth. Even with her and all the help we had around us through Elizabeth’s childhood, for the most part Caroline had grown up seeing me doing it all. Naturally, it led her to believe that someday it would be her taking over those responsibilities.

The truth is: we were alone, and my life was burdensome. But I didn’t want to let Caroline see that. At the time, she seemed to accept what I said to her. She didn’t bring it up again.

As special needs parents, we often don’t realize the impression we’re making on our kids, including our typically developing kids, even when we’re not saying anything out loud. We may not be talking but they are paying attention; they pick up on our fears and anxieties.

I thought I knew what Caroline needed growing up, but maybe it wasn’t enough. I wanted to let her develop as her individual self, not as Elizabeth’s sister but as Caroline Hines. I tried as best I could to give that to her. I arranged all sorts of activities. I taught Sunday school at our church for seven years so that I could be close with her. Then, especially when she was older, I made a point of taking Caroline on mother-daughter trips, just the two of us. I went mother-daughter Girl Scout camping with her, even though, dear Lord, I hated that. I am not a camping person at all, but I knew how important it was to let her develop her own interests.

I took her to Florida. I took her to Cape Cod, where we went on a whale watch and stayed overnight in the “Princess Suite”. I really tried to give her that crucial one-on-one time where we could just talk and be ourselves. And it worked: she always seemed to come alive in those moments. I was finally getting to know how funny and smart and beautiful she was. She had a strong sense of self (and fashion!) and was a deep, deep thinker—a real philosopher at heart.

I look back now on my mother-daughter trips with Caroline and can see how good it was for her to finally be out from under Elizabeth’s shadow. But I’m not going to lie: it wasn’t easy. It took major effort and sacrifice each and every time to set it up and find someone to be with Elizabeth. Then, when Elizabeth’s health problems increased in her teenage years, it became virtually impossible to keep up any semblance of balance. It was all Elizabeth, all the time.

Caroline is in college now. After Elizabeth passed away, life was pretty traumatic for us. We had to rediscover ourselves as a family of two, instead of three. She is studying a helping profession and it is a true fact that an overwhelming majority of siblings end up in helping professions. I’m so very proud of her! I will never know if every choice I’ve made has been the best parenting choice, but I’ve done my very best each and every time along the way.

If I could offer advice to parents who are struggling to provide support to the sibling of a special needs child, here are 4 tips you can start to implement today:

  • Create an estate plan with people and assets to care for your special needs child
  • Be sure that your other children have a life of their own and unique activities separate and apart from their special needs sibling
  • Reach out to your local community and family and friends for help so you can spend time with your other children too
  • Arrange one-to-one time with all your children
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