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Monday, February 18, 2013

Stage 5: ACCEPTANCE (a.k.a. The End of the Pity Party)

When I was a young girl - 18 years old or so, my first cousin had a baby boy. Mazel Tov! The trouble is, I had found out about a week before that she was expecting. The baby weighed under 2 pounds. He survived. He is now 18 years old. He is doing fine basically - except he has something called ROP, Retinopathy of Prematurity. In other words, this precious boy is blind.

His parents are the most incredible people I have ever met. They spared no effort and no dime to get the best care for their son, and to help him reach his full potential. He was partially mainstreamed and is now in a special ed yeshiva. I was invited to his bar mitzvah; it was a tearjerker. He is blessed with a melodious voice and a gift for music. He sang a moving song thanking his classmates and family for all their help. He delivered a bar mitzvah pshetl in Braille. It's an event I won't ever forget.

Utilizing his experience in the special ed field, my cousin's husband soon became the director of EEC, the local special ed school. At some point - I think at their second son's bar mitzvah - I told my cousin about Dovi. Ever the composed, dignified person who keeps her emotions in check, she didn't react visibly. But from then on she always had me in mind when there was an event she thought I would benefit from. She invited me to the annual EEC Shabbaton, and I was positively dying to go - but it clashed with the aufruf of my sister's chosson, so I had to skip it. But about a month before that Shabbaton, my cousin called me with a different offer. EEC held support events every few months for their parent body, and even though I wasn't really part of their parent body, she thought I would benefit from attending. As soon as she told me the name of the scheduled speaker, I jumped!

Sunday, February 17, 2013

Stage 4: Depression (a.k.a. Longing to be Normal)

I have written about the Five Stages of Grief and how it relates to Special Needs Parenting. I've gone through Denial, Anger, Bargaining (Guilt), and now I'm on to Depression. But I was never really depressed about the loss of Dovi's skills, and the loss of the child he was. Not depressed. Upset, angry, devastated, sad. But I was never unable to continue functioning because of it. But truthfully, not every person who goes through a loss goes through real depression. I don't know if there is a better word to describe the emotion I want to use instead of depression. It was still a kind of Anger, I suppose, but it probably falls under the umbrella of depression. The reason I'm writing about this now, is because the next post after this will be about Acceptance. At the time of this narrative, January 2012, I had still not really accepted the situation. Accepted the reality of it  - yes. I was not in denial. I was doing everything I could to help Dovi, and to help our family survive. But I had not yet reached Acceptance - as in accepting that this is G-d's will and His plan for my family and my life. I was still resentful and fighting it.

The underlying issue, the reason for my resentment and inability to accept this was all Divinely Ordained was an old, festering wound; an issue I had been struggling with since I was a teenager; a coveted status that seemed out of reach. I was longing to belong. To be normal. To be like everyone else. In the cookie-cutter society where I live in, there is little room for individuality. If you're not exactly like everyone else, you stand out like a sore thumb. And "exactly like everyone else" means: Married by 20. Mother by 21. Mother to at least six kids by 40. All kids well rounded and 'normal'. And of course, being a whiz in the kitchen with a clean house, kids neatly dressed and pressed, and having no other aspirations beyond the kitchen. If you're 'differnet' than any of the above in any way, you're, well, you're a sore thumb.

Kitchen gates, Refrigerator Locks, and Sensory Bins

As you've been reading in the past few posts, last winter I took many steps to ease the burden of caring for Dovi. We had res hab counselors, monthly weekend respite, ambulette transportation to school, volunteers on Shabbos... things were definitely calmer. But there is one major remaining issue that makes life around Dovi extremely difficult - unbearable even, at times. This past Shabbos was so bad in this respect, that my husband and I had a rare argument on Saturday night.

Dovi's high sensory needs and my inability to set and enforce limits in the wake of his soulful eyes and begging hands wreak havoc on the house. He has a constant need to throw things, pulverize things, smear things... a combination proprioceptive/tactile need. It's endless, constant, and superfire rapid. 

This past Shabbos, in the span of 1 1/2 hours he destroyed 2 bags of confectioners' sugar, a package of pancake mix, a bag of rice, several rumballs, and ground nuts. It takes him sixty seconds to rip into it, spread it all over the kitchen and dining room, and then head back for more. When he was done with the  powdered stuff, he took to the solids: multicolored straws, baking paper, rubber gloves, plastic spoons. By the time my husband came home from shul, it looked like an earthquake had hit in a grocery store.

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