Thursday, March 21, 2013


We were visited by the social worker the day after Jacob was admitted to the hospital to begin a course of ACTH to treat Infantile Spasms.  She informed us of the challenges that parents of children with special needs face and indicated that many marriages are unable to survive these challenges.

This was not our fate.

But our relationship was tumultuous at times, especially in the beginning.  He was 18 and I was 21. He was working at a fudgery and I was working at an ice cream shop.  After much crazy behavior in between, we married when he was 27 and I was 30.  Within our first year of marriage, we bought our house and had our baby Matthew.  Before our third year, we had our baby Jacob and seven months later, he was admitted to the hospital.

We did some growing up before Jacob but after Jacob, we grew together and for each other.  Matt gave up drinking and I gave up bitching.  Just kidding - that will never happen.

In the darkest days, when I could barely breathe, when I wished to God and to my grandparents who had passed to please, please heal Jacob, I had Matt.  And he had me.  I was in charge of the alcohol prep pads and band aids and he was in charge of the needles, syringes, and vials.  I carried on if the injection wasn't perfectly delivered and he calmed me down.

We are so different from one another, which may give us a collective spectrum of coping abilities.

What is certain is that I would not be able to face our challenges if Matt didn't know when to push me forward, let me loose, step aside, or hold me back.

Wednesday, March 20, 2013

Play Date

When Jacob turned three, he began Pre-K in the public school for a few hours a day to receive services. During the rest of the day, he attended a private preschool program. I became concerned during his first year there because his classmates started calling him Jacobsaurus. Jacob would roar at them every day upon returning from the public preschool. It became his shtick. Both the boys and the girls would line up and make requests for him to roar on their faces. I was uncomfortable with the show no matter how innocuous it may have been. Over time, Jacob would develop other routines that he would employ for attention, like smacking himself on the head and saying "OW!" It was hard for me to tell if his classmates really enjoyed him or his antics so I let his teacher know that I was concerned about him being like a class pet. So his classmates were discouraged from lining up anymore and although the name Jacobsaurus stuck, Jacob found his place with the rest of the class. Since Jacob was the youngest in the class, the others moved on to the next classroom. Jacob stayed behind for a second year, aligning with the birth date policy for entering Kindergarten in the public school. Now Jacob is the oldest in the class. None of his classmates this year call him Jacobsaurus. He's just Jacob. And he has a friend. And he and his friend have been insisting that they are going to each others houses for a play date. So Jacob was invited to go to his friend's house to play for a few hours and I was invited to leave him there. Honestly, I hadn't imagined how I would tell another parent that Jacob was different. All I said was that Jacob was disabled and would need help getting up and down the stairs to the basement where they would be playing. I said that he wouldn't kill himself but that I wanted her to know. I had no intention of leaving Jacob there but I was uncomfortable sounding the alarm. I said I would check with my husband and with Jacob about when would be a good time. Later, I said that I would just hang out there with the baby because Jacob isn't potty-trained. I hadn't considered that he may poop his pants during the play date and how fun that would be if I were to leave him there. Clearly I have not mastered how to schedule a play date in a dignified manner. But Jacob has a friend and we are all going on a play date tomorrow. So now I will scratch this off of my list of worries from years ago - whether Jacob would be able to make friends.