Saturday, January 22, 2011

"So, what do you tell Bridget?"

I get this one a lot. What do I tell Bridget about her brother and his diagnosis?
Owen has had early intervention since he was 8 months old and she was 3.5 years, so services have been a part of her life for as long as she can remember.  She often enjoys visits, playing with their toys, and often workers have brought special toys just for Bridget.  I told her that they come to help Owen learn, and I don't remember her ever having one question about it.  I also tried to structure the visits so she would be upstairs playing or watching TV for the first half of the visit (allowing Owen to focus) and she would often come down during the end to play and participate and 'socialize'.
After the early intervention worker raised suspicions of a more serious diagnosis in December of 2009, I never discussed my concerns, cried, or made phone calls to doctors in front of Bridget.  I didn't want her to worry or be scared.  I didn't want her to be traumatized by my fears or hysteria.  There were times I would put the kids in front of the TV and run upstairs and sob uncontrollably.  But I never, ever, did it in front of her. I didn't want her to think, or blame, or feel her brother has 'caused' something wrong to happen to her family.  In working with kids I have learned how they react when they know 'too much' -  they can feel helpless, overwhelmed and anxious, worrying about 'adult' worries that they have no control of.  
The day I got the call of the diagnosis from our developmental pediatrician, I was contacted about 6 hours later by a genetic counselor in the hospital who told me she was there to answer any questions.  One of the questions I asked was "What do I tell our daughter?"  And she told me not to 'avoid' talking about Fragile X, but just to talk about it matter-of-factly in everyday conversation - just as Bridget has brown hair and hazel eyes, her brother has blond hair and Fragile X.
I scheduled all his doctor appointments for when she was in daycare so her daily routine wouldn't be disrupted, although she would also know he was going to see a doctor.  As Owen went through his numerous evaluations in different departments, and she began to express curiosity, I figured I could bring her to an appointment that was 'innocuous.'  She ended up going to his hearing test appointment.
As I've said before, Children's Hospital Boston is a pretty cool hospital.  The waiting room of the ENT had a giant flat screen TV playing Disney movies, the walls painted a warm dark blue, with toys and books galore.
During the testing we were divided into two room with a window between.  Owen, myself and one audiologist sat in one room, while Bridget and the other audiologist sat in the other room, with both audiologist wearing headphones and mikes to communicate.  At one point the audiologist in my room started cracking up and told me it was because she could hear Bridget chatting away with other audiologist, telling her all sorts of family business and how she wanted to be an "early interventionist."  Bridget loved her visit, and after that if there was an appointment scheduled on her day off (that I felt appropriate for her to attend) I gave her the choice of coming to the hospital or going to a friend's house for the day, and she would usually choose the friend's house because it was 'more fun.'
There were times I tried to ask her if she had any questions.  One day, she asked me a question about something, and I launched into a huge big answer.  I looked at her, fearing her next question, and then she asked "So, what were the gifts that you got me for Christmas, and what were the gifts Santa bought me?"
The beauty of kids is that they are egocentric, and it's all about them. Bridget got an answer she was satisfied with, probably listened to half my ramblings, and then moved on.
What also helps is Owen's lack (knock on wood) of medical issues.  There aren't hospitalizations or trips to the ER, even though her brother received a diagnosis of Fragile X her daily life never changed.
We try to divide our attention 'evenly', making sure Bridget feels she is getting special time regularly, and daily doses of love, hugs, compliments, and play.  We all spend time together as a family, and Bridget and I have (at least) one day a month "Girls' Day."  She loves coming to work with me or running errands with her father.
Sometimes Bridget gets frustrated or annoyed with her little brother, like when he tries to grab her toy or steal her snack.  But most of the time they really get along well.  Bridget tries to act as Owen's interpreter, telling me "He wants some cheese" or "He wants to watch TV."  I used to call her 'the baby whisperer'.  There have been times the only person who could sooth him was she, and I have heard her singing him songs as they lay in beds in their shared bedroom.  Owen absolutely ADORES her.  She loves to run around the house with him, dance to music with him, or snuggle up and watch movies with him.  Recently my mom babysat them both at her house, and later she said, surprised "They are best friends!"
Course, I worry about that too.  I don't want Bridget to feel responsible for him, and I remind her that I'm "in charge" of both her and Owen, and she is his sister, not his mom.  I realize that it's normal for a big sister to parent her younger siblings, but at the same time I have seen kids at my work that feel they bear the burden of responsibility for sib's with special needs, and I don't want her to feel that way. 
And of course, with her crazy mother being a social worker, Bridget has always been told that there are all different kinds of families, and there are all different kinds of people, and they are all of worth and value.  These days kids' with disabilities are regularly featured on kids' tv shows like Sesame Street, or many of the HBO family shows.  So we've talked about how there kids in wheelchairs, kids who are blind, or kids who have Fragile X.
When I first brought her to Children's Hospital, I was nervous about her being in the main lobby.  There are all sorts of kids who pass through there, and I imagined that it may be scary for her to see sick/ill/disabled kids.  On the ride home from the hospital I asked if she had noticed anyone in the lobby, and said "Mommy, that hospital is SO COOL!!! I love it there! That ginormous fish tank is awesome!"  I love the fact she only sees kids and people.  This may sound strange, but one of my favorite moments as a parent was when we were watching American Idol and she was asking about the judges, and she said "Which one, Mommy, the mean guy or the guy with the glasses?"  I loved that she never identified Randy by his skin color, that it wasn't the way she defined him. 
I hope to raise a daughter who is loving, open-minded, and maybe a bit strong willed.  I see how 'assertive' she can be (aka bossy) and although their has been a part of me (as a parent) that wants to squash that, I also think it will benefit her in the long run.  I know she will struggle with her own emotions and battles about her brother's diagnosis (and possibly being a carrier herself), and I pray she also has received many gifts she will need.   Sometimes people say Owen has been 'given' to me because I am a parent who can handle it, and I really feel we have been blessed with Bridget because she is vital to our family. 
I love you B, with all my heart, always.  xoxoxox

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