Sunday, January 10, 2016

I have not visited this page in more than a year but the story is far from over. Jacob's miraculous progress has continued of course as well as my pursuit of surgical interventions (tendon transfer surgery) and therapies. Jacob was exited from Speech Therapy last school year and qualified only for OT and PT during the Extended School Year services. He was promoted to the first grade this year. Surprisingly, academics have not been the greatest concern... During a meeting with Jacob's IEP Team, I asked about Jacob's relationships with his peers. His teacher responded that he was one of the most sought after students in the class. While that may have been the case in the classroom, Jacob had never been invited on a play date or even to a birthday party. I asked about teaching him social skills, about personal space (no kissing, ask before hugging) and reminding him to wipe his face so he doesn't drool or spit on other children. I also brought my concerns to Jacob's pediatric neurologist who said there was no cause for concern. He was invited to a birthday party at the beginning of the school year and has since joined the Tiger Scouts. He is developing a sense of belonging and is reaffirming my own belief that his greatest gift is his care and concern for others. Friendship will follow.

Friday, April 18, 2014


I have been avoiding the blog for many months because the last time I posted, I had almost killed Jacob. Since his near drowning incident last July, Jacob has been taking private swimming lessons. And private karate lessons. He also potty trained last November after he turned 5 years old. He can write his first name and recognizes numbers. Jacob continues to be amazing. Seriously. We never really knew what to expect in terms of his development, just that he would be delayed. But nobody told him. I spent a year or so cataloging every word and approximation he ever said because I didn't know how his speech would ultimately develop. During the latest cycle of his IEP, he almost didn't qualify for speech services because of how well he speaks and understands. Time and intervention. Jacob is also playing t-ball this year through our community's "Challenger Division" for children with disabilities. Jacob is our Jim Abbott (MLB pitcher born without a right hand). I watched a video of how Jim Abbott played and then showed Jacob how to tuck his mitt under his armpit to get the ball out and throw it. Our next adventure may be a trip to New York this summer. We are waiting to hear if Jacob has been accepted to participate in a study to evaluate bi-manual therapy (using two hands as opposed to only using the affected hand). Research. Progress. I will post again once we know something...

Thursday, August 8, 2013


A few days before the Fourth of July, Jacob was taken by ambulance to Hasbro Children's Hospital. His medical diagnosis was near drowning. Jacob tripped and fell into a pond feature. Matthew tried to pull him out and then ran to get me. I pulled Jacob from the water and he cried hysterically. We called 911. This was worse than seizures... worse than brain surgery. When I pulled him from the water my inner voice said this can't be the end. I heard the friend we were visiting in my ear say over and over I know CPR. When I saw Jacob, he was peaceful and he was looking at me. When she saw Jacob, his eyes were closed and his lips were blue. I saw what I needed to see to know that he would be okay. And he was. I was not okay for a few weeks. Post Traumatic Stress. The image of Jacob was in my mind everywhere I looked for days and days. Now I only see it every once in a while. This was a warning and a reminder. No matter how much progress he has made, no matter how well he has adapted, Jacob will always have special needs and I will always need to remember that he is special and never EVER take that for granted.

Saturday, May 11, 2013

Potty Talk

The potty continues to be elusive. I am convinced that Jacob has not yet developed the motor control necessary to effectively respond to the sensation of having to go. This morning Jacob took his own "night-night dipey" off and threw it in the diaper pail. Then we forgot to put on a Pull-Up. Jacob told me he had to go poop so I put him on the potty and he went pee. Then an hour or so later, he said he had to go poop again. But as he was walking towards the bathroom, I saw something strange in the hallway. It was no more than a few inches tall and quite sturdy, but ominously brown. Poop. Anyways, the fact that Jacob went without wearing a Pull-Up and told me he had to go two times this morning is the most progress we have had in two years. His muscles are beginning to work for him, the motor control will come.

Friday, May 10, 2013

Mrs. Dugan

Jacob's preschool teacher Mrs. Dugan was surprised with the Golden Apple Award after April vacation and Jacob and I attended the ceremony. You can see him holding the banner in front of Mrs. Dugan at the end!

The Golden Apple Award

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.

Wednesday, January 16, 2013

Potty Post

Who would have thought that pee pee and poop would require so much soul-searching.  After being warned that Jacob may not be able to attend his preschool next year if he is not potty trained, I drove home, put the baby carrier down, and had a nervous breakdown.  I consulted with the Brain Parents Group on Facebook, with Jacob's pediatric neurologist, with the YMCA, with my dad... Ultimately, there IS a neurological basis for why Jacob is not yet potty trained at 4 years old.  What is problematic is that this developmental delay is treated differently than another such as speech.  We never yelled at him to speak to us.  We took a class through Early Intervention to address his speech delay.  We waited patiently as his skills developed.  And we celebrated every success such as when he said opah instead of "o" for the word open.  Speech was very slow in developing until it exploded.  But potty training is different because it is socially unacceptable for a child to wear diapers after the age of 3.  Every daycare, preschool, and summer camp that I have researched requires that children are potty trained by the age of 3.  My 6 year old Matthew, who is a typical child with a very sophisticated thought process, was not potty trained until he was 3 1/2 years old.

We introduced both Matthew and Jacob to the potty before they were 3 years old.  I determined that Matthew was finally ready because he would fight with me about changing his diaper and he would readily go to the potty when I asked him.  He wore "night-night" diapers for a while until he stayed dry through the night.

Jacob showed real potty promise before he was 3 years old.  I blogged about it in June of 2011, that Jacob had gone on the potty about 8 times over the course of a few days.  But rather than the right switch going off  and Jacob being in underpants to this day, Jacob became tearful, upset, and completely non-compliant about using the potty.  So we let it go.

We have tried intermittently since then, using rewards, trying to reason with him.  Sometimes he goes but most of the time he does not and many times he becomes agitated.  Yesterday, he stood at the potty 4 times at 30 minute intervals and "tried".  Then 5 minutes later he ran to me and said he had to go potty.  We've been here before so I asked him if he already went in his underpants and he had.  He asked if I was angry at him.  This morning, I made him sit on the potty after he woke up and after some fussing, he went pee and was rewarded with two Hershey kisses and a coin for his piggy bank.  After we got to his school, I told him we would try again and he had a meltdown.

Although Jacob shows signs of readiness, he is not ready.  He's saying "o" now and maybe in a week or a month he'll say "opah" until finally he explodes and is open to potty training.