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.

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

Daddy

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.

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.

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.

A.J.B.

Aiden Joseph Borgueta is three weeks old today.  I truly have enjoyed every moment with him.  I am afraid to squander the time because I have few memories of Jacob as an infant prior to six months of age when his story began.

I have probably had post-partum anxiety with all of my babies, but it manifests in different ways.  With the birth of Matthew, I experienced paranoia, believing that people both known and unknown to me were plotting to steal him from me.  My mother, my sister, the cars driving down the hill with their headlights peering into our picture window...  When Jacob was born, I felt some resentment towards him because Matthew would no longer be my baby.  I was not ready for Matthew to be a little boy and when we came home from the hospital, Matthew seemed as if he had grown dramatically.  The same happened with Aiden's arrival.  Both Matthew and Jacob seemed gigantic to me.  Jacob was not my squishy, wet-mouthed little boy anymore.  He was a big boy.  My only sadness has been that Aiden is likely our last child and he is so wonderful that I don't want his infancy to end, which is why I am enjoying every moment with him.

Aiden was born on December 21st, the day before Jacob's two year hemispherectomy anniversary.  I cannot believe that it has been two years.  I have virtually stopped cataloging the gains that Jacob has made because the list would be extensive.  He is speaking in sentences.  He rarely falls down.  He has friends.  He fights with his older brother and is jealous of his younger brother but expresses love for both of them.

There was a time that I thought he would never stop having seizures, there was a time that I thought he might die during surgery or thereafter due to complications, there was a time that I wondered if Jacob would ever be able to live independently, if he would find someone to love him, if he would have children of his own.  I don't wonder anymore.  He is thriving.  Everyone loves him.  And he has a baby - Aiden.

In the Middle

My husband Matt and I are both the middle child in our families.  A unique position.  Not the first born.  Not the baby of the family.  Jacob will be a middle child as well.  The little brother, the big brother.  Someone to care for him and someone for him to care for.  

Baby Aiden is due on the 26th of December.  He is Jacob's baby because Jacob said he will sleep next to the baby in his bunk bed and he will feed the baby.  He said the baby will ride with him in his Gator.  I said the baby will need Jacob's diapers so Jacob will need to use the potty...  

If not for Jacob's hemispherectomy surgery two years ago December 22nd, we would not be expecting Aiden.  I would not have had another child if Jacob had not made significant progress.

My baby is a boy.  As he grows, the scar circling his ear becomes smaller and smaller.  A mark of his rebirth.  A reminder of a past life.  We live blissfully in seizure freedom.  

Kindergarten

My husband sent his first teacher email.  I told him, "You know there's a problem when Daddy gets involved!"  Daddy is always involved but usually I'm the only one getting fired up.  Matthew has to keep a weekly Reading Journal, which we objected to at first because we like to do things the way we do things.  We don't like mandates.  But with some motivation from Nana, we decided to make an effort.  This past week, Matt and Nana read lots of books with Matthew.  So we were surprised when the Reading Journal came home and there was a post it note inside that read, "Sorry.  Matthew did not take his Reading Journal out of his folder."  What!?  I asked Matthew why and he said that the teacher takes the Journal out.  And obviously she did to place the sticky note.  Then I asked about the volunteers who come in to log his reading. "They didn't call my name.  Maybe they did when I was getting on the bus."  Poor baby.  My boy is not the most compliant child BUT he does understand social norms and knows how to behave in a school.  There is no way that Matthew purposefully did not take out his Reading Journal.  Why?  Because he has pride in what he does and what his family does with him.  I'm sure I sound like an idiot.  I have said it before, that I over react, that I am a little dramatic, but seriously... Sorry we left your child out and didn't acknowledge that he and his Daddy and his Nana worked very hard with him, but it's HIS fault.  Not mine.  Because he is 5 and I am 55.  And I am always right because I am the teacher.

Not on our watch.  She also sent a paper home with "x's" and a "-2" with a note that said to correct the work with a parent.  Matthew was supposed to color squares or circles according to the number written below each exercise.  For one of the numbers, the teacher wrote that there were too many shapes colored in and that you should always count twice. For the other number, she wrote that there were too few shapes shaded.  I applied my own teacher eye to the exercise and counted the number of shapes Matthew had shaded in for each number.  And guess what?  Matthew shaded nine shapes for
the number 6 and six shapes for the number 9.  She is the teacher.  Why did she not notice that he had confused his 6 and his 9?  Instead, she thinks he has no number sense and needs to send his work home to correct with his parents so they are aware of the "problem".  

I know what the problem is and so does Matt, which is why he emailed the teacher to ask her to clarify why Matthew did not take out his Reading Journal... Waiting for her reply...

The reply... Matthew put his folder in "the box" instead of "the green bin" so his Reading Journal was not discovered until after the volunteers had gone.  As Matthew told us, they didn't call his name.  He is a red folder.  No folder, no Matthew.