Sunday, January 4, 2009

Siblings and Disability

Over at Barriers, Bridges, and Books, Terri has raised the subject of Siblings. (She linked to a short but good article on it as well.) So I want to add in my 2 cents or esser agorot (equivalent Israeli currency).Siblings can be a tough issue. There is a woman in our community known for giving advice in child rearing, and she is really very good.
But as good as she is, her luster was broken for me one evening. A friend and I (she has a child with learning disabilities) went to her this lady speak. During the speech, she mentioned an enquiry from a woman who was worried about giving enough attention to the sibling of a special needs child. Women in the crowd LAUGHED. The speaker said nothing about how insensitive this was. Afterwards, my friend and I agreed that we felt like Martians. Worrying about siblings was not a joke to us, but a real life issue.
I think all parents of special-needs-children worry about siblings. If they don't, they should. I once saw some research (sorry, can’t remember where) that basically indicated that families usually do OK with a special –needs child, the exceptions being:
-parents who have personality-emotional problems of their own
-parents stuck at home and in isolation
-where the special-needs child was abusive or had problem behavior (ie., severe physical needs was not the problem, rather, behavior.)
-extreme poverty

So, if you have none of the above qualifications, why should you be worried about the siblings? Won’t they grow up, as the study says, viewing life with more maturity, feeling that they gained from the situation. Yes, hopefully they will. But children are not adults. They see things differently.
[An aside to prove this point: Look at an old photo album with your kids. They will remember different things than you do of the same event (More on this, hopefully, in a further post.)]
I remember about six or seven years ago, one of my older sons (who complained about being a “sibling” more than the rest) asserting that I was not being pro-active enough in helping him find a match. [We do “old-fashioned” match-making here, and it works pretty well. Parents check out prospective matches, but the couple meets several times before making the final decision themselves.] I paused and considered his complaint. And for once, he was right, and I attempted to do more efforts in that direction. [P.S. He is happily married several years now.]
So here are my suggestions:
1. Be open about the existence of the disability. Don’t make it into a tragedy, but definitely don’t hide it or pretend that it doesn’t exist. Kids are aware of their parents moods, and besides, wouldn’t you like to have them hear about the disability from you (with your upbeat attitude), and not from the neighbors?
2. Allow the sibling (at any age) to:
-be upset with the diagnosis
-complain about you being busy
-complain about their sibling’s bad behavior
3. Try and find time to do stuff together, fun things- both with and without the special-needs child
4 .Remember that you are the caregiver. You chose to have or keep this child. Siblings can help, as they need to help in any household, but they are not our slaves, nor are they the main caregiver. They have their own lives. And if they don’t want to do a certain activity with their sibling (like take them to the park) because of embarrassment, drop it. Have them help with regular household things. I have had kids who wanted/ didn’t want to take Ricki along with them to various places, and I respected their feelings. I believe that the NON FORCING was the best way for them to come and accept their obligations and opportunities (to help their sibling) with love.
5. If you buy lots of stuff (needed stuff, even) for the sibling, occasionally buy for the sibling something for HIM. I think I wrote about the following incident once, but I can’t find the previous post (and Ricki’s sibling is breathing down my neck, wants the computer already….). So I will, it seems to be needed, repeat: Once Ricki’s brother that is only two years older than her (and has borne probably the most flack from her diagnosis), came to me and said: “You know, I saw the most stupendous toy that you should buy for Ricki. It is really very educational.” Thank- G-d I saw what he really wanted, and said, “No, I don’t think it is good for Ricki. But I think that I want to buy it for YOU.” His big grin showed me that I had been right on target.

Other previous post on siblings:
1. Thursday December 25 (scroll down a bit)


Cheryl said...

Wow! Great post! You made some excellent points.

Terri said...

Thanks for the link and for your thoughts. It is a tricky path and we just want to do the right thing.

Kel said...

That is so true! One of my first concerns when finding out our second sons was special needs was how I would manage that AND do what's right by his older brother. We spend just as much time and effort ensuring our sibling doesn't feel left out as we do working with our special boy, and it is so hard to find the balance.

A Living Nadneyda said...

There are some very similar issues for families with chronically or acutely ill children. They have to divide their time, attention, worry, etc. between one very ill and physically + emotionally needy child, and all the rest. The ill child is often in the hospital, so one parent is physically absent from the home a lot of the time. It is extremely difficult for them, but often they are so worried about the ill child, they don't have the strength to continue with all the rest. I have respect for those parents who, despite the extreme difficulty and guilt feelings, draw the line and go home at night to be with their other children, instead of staying in the hospital with the sick child (another adult, of course, stays with the sick child). It's really a tough dilemma.

But you know all that...