I just listened to a podcast featuring Elizabeth Gilbert, author of Eat Pray Love. She had recently completed an arena tour with Oprah Winfrey. The podcast touched me because it relates to siblings of special needs children, a topic we don’t often hear about.
It seems that, at one of Oprah’s venues, a teenaged girl was introduced through the Make-A-Wish Foundation. The girl was accompanied by her parents, and a sister about nine years old.
Oprah invited the teenager onto the stage and talked with her in front of the entire arena. It was wonderful and inspiring, fulfilling this girl’s dream!
Then, to everyone’s surprise, Oprah went one step further. She invited the girl’s younger sister onto the stage, and turned the spotlight on her. The sister simply beamed, and her joy filled the entire arena.
Seeing things that others don’t
The scene struck Elizabeth Gilbert as symbolic of why Oprah is so successful. According to Elizabeth, what Oprah knew was this:
“OF COURSE that kid gets no attention… It doesn’t mean her parents don’t love her, they just don’t have time and energy. They have a very sick daughter.”
(You can listen to this heartwarming story here from 45:17–48:09 in the audio.)
Oprah was onto something. In my opinion, siblings of special needs children are one of—if not THE—most unrecognized and under-served groups in the world of childhood special needs.
Squeaky wheels get the grease
It’s understandable. Professionals and organizations in the medical and mental health communities focus upon the child with special needs. Their services rarely extend to other children in the family.
And overly busy parents, juggling many responsibilities, to a large extent must also focus on their child with special needs. It’s a necessity.
This is not to say that parents don’t pay any attention to their typically developing children. Or course they do. But they probably wish they could do even more. Many parents I know try to balance all their children’s needs, even to the detriment of their own health and wellbeing.
But as Elizabeth Gilbert pointed out, the fact of the matter is that time and energy demands constrain the parents. They do the best they can, but often their more capable children get less attention.
Back when my sons, Peter and Michael, were in elementary school, my hardworking ex-husband traveled frequently. Weekday evenings would often find me with the three children, dinner and dishes done, homework completed, in those last few hours before bedtime.
I would have already put in 14 nonstop hours of work, and I craved to be done for the day. I was exhausted. I had no energy to engage—really engage—with the boys over their school day or anything else going on in their lives.
To compound things, Gracie required one-on-one care for her bedtime routine. She had major sleeping problems during those years, and was too anxious to fall asleep easily. So we set up a lengthy, predictable bedtime routine that included reading stories, singing certain songs in a certain order, and me snuggling with her in bed until she grew very sleepy.
I realize this seems kind of quaint, but in truth it didn’t always work that well. It could take as much as two hours each night. Sounds nuts, I know—why couldn’t I figure out something better? Believe me, it wasn’t for lack of trying.
Meanwhile, what were my young sons doing with their hours before bed? They were in their bedrooms, reading quietly.
Was this a bad thing?
Not necessarily. The boys became good readers and were very knowledgeable. Their schoolwork was better off because of it. And reading quietly in a bedroom can be a pleasant way to end the day.
Yet, there was a downside. My boys didn’t have a parent present—not really—not emotionally, nor even physically. They knew not to come in and disturb their sister’s routine.
It was what it was. I didn’t know what else to do. (And I was and still am extremely grateful that the boys were so well-behaved and responsible.)
So what’s the point?
It wasn’t that the boys had to read by themselves or that they had no parent readily available. We all know having a parent available every minute is neither realistic nor healthy. My point is the EXTENT of how much this routine happened. It went on for YEARS.
All along, I thought that in only a few more weeks or a few more months, something would shift. We would find the right combination of doctors / therapies / medications, and I would achieve more balance with my children.
But for pretty much their entire childhood, my sons spent many of their evenings reading alone in their bedrooms.
What’s the answer to this parenting dilemma?
Every parent of a special needs child who also has typically developing children has their own version of this story. Each family is different, every situation unique. There are no simple, pat answers.
But based upon my experience and with the benefit of hindsight, I have created a brochure called Raising Siblings of Special Needs Children.
I hope you find it helpful. Please share your thoughts below!