Monday, July 27, 2009

Ricki and Her Siblings (part of this post is a repeat)

There is a fundamental difference between Ricki’s siblings and myself. On a certain level, I agreed to this challenge (continued pregnancies after age 35, did not give her up for adoption, etc.). Ricki’s siblings did not. Having a special-needs sibling was thrust on them, without their asking.
Perhaps that is one of the reasons that they cut her a bit less slack than I do. Or perhaps it is due to the normal “sibling” relationships: a sibling is perhaps one’s best friend, yet he is simultaneously a competitor for your parent’s time, energy, and money.
In any case, Ricki’s siblings are simultaneously proud of her, and her achievements, and exasperated beyond end with her idiosyncrasies and misbehaviors. For example, Ricki’s sister joined her sister-in-law and me to attend Ricki’s graduation event, an hours-long event that surely tried her patience. But she is equally quick to notice any misbehavior or shenanigans on her sister’s part. (Which is OK by me.)
Here are my
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.


Staying Afloat said...

Just found this blog, and am enjoying.

Great breakdown. I've got an autistic son and four other kids (he's right in the middle), and each one reacts differently at different times. I've never had any try to pull that last one on me, though!

If I may add from my experience, though my kids are younger:
-I would also say to look out for the kid who always gives in and always wants to help. They need the attention and extras too, and it's so easy to forget them because they're not a squeaky wheel. We made that mistake, and it wasn't pretty, because eventually they can explode on you.

-Also, take advantage of perks they might get as a result of the special needs sibling. Maybe a free carnival run by an organization, or getting to the head of lines at amusement parks, or whatever.

Batya said...

This is a "must read" post!
You're some special lady!!!

ps Most children born to women over 35 and even over 40 are perfectly "normal," without any "special needs." The "odds" were with you.

rickismom said...

Muse... Yeah, I know that the "odds" were with me.But I was aware of the risk, too. My MIL kept telling me (again and again, and again) that if I continued, I would risk having a child with Down. I choose before the birth the name רינה (Ricki's true name) because we were HAPPY to have a big family. In the delivery room, I then and there said "Gosh oh Golly, we will STILL call her רינה because we will be happy with her and we have done no wrong.

Ettina said...

You know, these siblings posts always seem kind of odd to me, because my younger brother has never really had any trouble dealing with the fact that I'm autistic. On one occasion, apparently, he was being teased by some classmates about having an autistic sister, but that's about it. It doesn't have to be a big deal. As far as my brother is concerned, I'm just his big sister. I think he likes helping me sometimes, too, which is something most kids with a sibling 8 years older wouldn't get to do.