Monday, February 25, 2008

Siblings: my local editor's column about his two sons

This week I'm writing about the relationship(s) between typically developing siblings and their special needs (not necessarily autistic) brothers or sister(s). Yesterday, I wrote about the relationship about my nine year old with Autism Spectrum Disorder and his neurotypical five-year-old brother and my hope that they will stay as close as they are now. I should note that my older son has a mild impairment and that the developmental divide between the brothers isn't all that wide (at least not at the moment).

However, there are families with children where the developmental gap is much wider because of a severe disability. That doesn't mean that a relationship doesn't exist. In some cases the siblings may be much closer than they otherwise would be. A disability in the family may also mean that the non disabled child grows up to be a mature, compassionate adult.

By sheer coincidence, the editor of my local paper, The Morning Sun, published a column in yesterday's paper where he wrote about the relationship between his seventeen-year-old son and his younger, severely disabled brother. The editor calls his eldest son "his brother's hero." Below is an excerpt, although I'd encourage you to click on the link and read the whole column. It's an inspiring story.

Editor's column: A Special Bond Between Brothers

"Zac was probably 12 the first time he saved Seth's life, using a finger sweep to dislodge a Lego.
But the instinct to love and protect was there much earlier.
Seth was an unusual looking baby, with low setback ears and other abnormalities.
He attracts stares.
Zac can deal with staring children; not so much staring adults. One day at the grocery store, a lady stared at Seth aisle after aisle. Eventually, 7-year-old Zac had seen enough.
"What are you staring at?" he said. "He's just a little boy."
That's my Zachary.
Seth was just a baby the first time anyone ever suggested that things would be different for Zac.
We didn't believe them.
We do now.
It wasn't very many years later that Zac would wish his brother could talk and play, that he had a normal brother and not just a disabled one.
Having a severely handicapped sibling, the experts said, is one thing.
But being the only sibling to a severely handicapped brother is quite another.
With Seth a teenager now, Zac's the one who carries him to bed, helps him to the bathtub and does most of the heavy lifting. "
"Seth does not give back, at least not like most kids do in a loving relationship.
He won't play with you. He won't return a smile. He takes a lot of work. Which is why I'm filled with both pride and sadness at Zac's sense of responsibility for his brother. "


Marla said...

I grew up with my older sister having a stroke when she was six and I was two. She was paralyzed on her left side, blind in one eye, deaf in one ear and severely developmentally delayed. This forever changed my life. I was sent from home to home while my parents delt with hospitalizations and trips to far off hospitals.

I do believe I became mature much sooner and learned a great deal about compassion and how to help others.

It was also very tough. I was always told things like, "Get over it! It could be worse...look at your sister and then see if you feel like you have any real problems." My parents were not always like that but they did on occassion say such things as that. It really can screw you up in many ways. The pressure not to burden your parents with your problems becomes immense, even at a very young age.

Now, as an adult my disabled sister has managed to give birth to two children that she struggles to raise. My parents continue to devote extraordinary amounts of attention to her and her children.

the pressure put on the non disabled sibling is immense and it never ever goes away. Parents are wise to spend lots of time with the non disabled child and not belittle that child's problems or concerns about their own life.

I would also say parents should never force that sibling to be a "built in" playmate when reaching the teenage years. Even if one sibling struggles to have friends the "normal" sibling should not be made to feel guilty or forced to turn down invites to always be with the disabled sibling.

Many parents do not think about the affect of being raised with a disabled sibling and the immense pressure placed on them. It is very inspiring to me that you are taking the time to discuss this important issue!

My experience with being raised with a disabled sibling has made me very hesitant to adopt another child considering our first is disabled and chronically ill. I do not know if I have the energy, patience, time and money to care for a second child. Even though I turned out well I would not want a child to be under the constant pressure that I felt as a child and I don't want to age as fast and be as exhausted as I see my mother is.

J said...

Thanks for sharing your story Marla. I guess I never realized how tough it could be to be a sibling of a special needs child. I really appreciate your insights here.

Elissa - Managing Autism said...

I often wonder what the long term effects will be on my daughter - having a brother with an ASD. Time will tell, but thank you Julie for a great post... and Marla for sharing your thoughts... an important topic to address!

tulipmom said...

Thank you for this post. I have a seven year old son with Asperger's and am expecting a little girl in April. It goes without saying that all of this stuff has been on my mind a lot lately.

Anonymous said...

I am searching for information on the effects of Autism on the family, i am currently seeing a guy who's younger brother has Autism, i would like to understand him a bit better, i have worked wiyth autism in the past but have not dealt with siblings of autistic children. i have noticed that some of the behaviors that this man displays are very much like those of an autistic youth. this my seem little and insignificant but this is very important to me. please if you can help.


J said...

Hi, no your concern does not seem insignificant. I may revisit the sib theme soon and check around for sources about adult siblings.
My children are five and nine so my knowledge is stronger for that age group. I wish you the best of luck in your new relationship.