Apr 30 2014
The first time I remember talking to Oscar about his younger brother Saul’s special needs, he couldn’t have been more than 5 years old. Definitely still in preschool. There was something–though I can’t remember exactly what–that Oscar thought Saul would like and he said, “Saul is going to do this!” and started flapping his hands and bouncing up and down. I lost it. I couldn’t believe my sweet little boy was making fun of his younger brother who has Fragile X, which is a genetic syndrome and the cause of intellectual disabilities that can include learning problems, autism, anxiety, sensory, and behavioral issues.
As a parent, my biggest fear was that Saul was going to be subject to a lifetime of cruelty from others who didn’t understand his condition, but I didn’t think this cruelty would begin in our own home. I yelled at Oscar–I can’t recall exactly I said–and his face fell. He said, “But Saul will be happy and that’s what he does when he’s happy.” I realized then that he wasn’t mocking his little brother. He was simply acting out the happiness he anticipated from Saul. And I had yelled at him for it. When I agonize over all of the mistakes I’ve made as a mother to three children, this incident always cracks my top 10.
Saul was diagnosed on the first night of Hanukkah in 2007. He was just 1 1/2 at the time. And in the six years since, our family’s life has, often out of necessity, revolved around Saul’s treatment and care–from countless early intervention classes to a variety of therapies to special schools. There are places and things we can’t do together as a family. And at home, Saul’s needs sometimes seem to take priority ahead of those of his “typical” siblings–his twin sister Beatrice and Oscar. Read the rest of this entry →
Feb 28 2014
Dearest Sugar Bee,
It was your birthday yesterday and I fell in love with you again. We were out in the desert with friends and you were your beautiful, lively self, enjoying your family and friends and soaking in the sunshine. We spent a lot of time holding hands and swinging in a hammock and talking about life. I gave you your “7” charm to wear around your neck this year. It’s the charm that I wore when I was 7 and Grandma wore and Aunt Lenore too. The charm that Grammy brought into our lives. Lucky seven. We are indeed lucky.
Flashback a week and we are fighting about homework. Again. You are giving me that look. Slack jawed, tongue forward, eyes rolled, wobbling your head like a car ornament. And I want to kill you. I feel my chest tighten and I want to shriek that I can’t stand you. That I don’t understand why you treat me the way you do. Why only me? I try to diffuse your frustration and anger which I have gotten pretty good at after this much practice. My encouragement falls on deaf ears. You are too far gone. I excuse myself from homework and give myself a time out in my bedroom and hold my head in my hands until my anger dissipates. When you calm down too you knock on my door and we hug. You give me the picture you drew of us together. I smile and thank you and add it to the pile. We continue to work; you finish your homework and peace is restored to our home. Read the rest of this entry →
Oct 4 2012
You know who’s screwed Jordana, you are!
Via Tamara Reese
I had a lot of fears about my firstborn’s reaction to a new baby. We did everything we could to prepare him and I believe much of it was a success, particularly the “big brother” books that we read at ad nauseum. We’ve been especially diligent at pointing out what Big Brother can do that baby cannot.
That being said, it’s been a rough month over here.
My firstborn, now 2 and a half, refused to eat our first week home from the hospital. He’d pick at the occasional carbohydrate here and there but showed his displeasure through exerting control over what went into his mouth. That passed and now mealtime is accompanied by tantrums and food throwing. Yay.
And then there’s sleep. A first he went to bed at a reasonable hour and then had a nice 4 a.m. wake up where I was trying to juggle two crying boys. The past few weeks, we put him down for bed and he stays up in his crib until well past midnight talking, screaming, playing, calling for me and claiming to have poop in his diaper (which turned out to be true only once).
The only upside is that he’s still in a crib and hasn’t attempted to climb out (knock on wood).
Read the rest of this entry →