Up Syndrome Issue 5

Moishey was in bed, ready for a good's night sleep, when he suddenly noticed a half inch hole in the sole of his pajamas (hey, Carter's! Lifetime warranty/guarantee?). A true perfectionist, he started to pester me to change his pj's. I told him that I would give him a ‘perfect' pair the following night. Moishey's expression changed to mild bewilderment as he pleaded, “But I can fall out of this hole!”

Approximately three months after our unforgetful Shabbos getaway with the Bikur Cholim of Rockland County (see Greetings From...) my husband decided to review with Moishey his popular good-by performance in the public dining room. At the time, Moishey had sung a song into the microphone for the entire audience and when he finished, Moishey stepped in front of the podium and bowed down to all assembled. The audience roared.

Now, while reviewing, my husband asked, “Moishey, which song did you sing at the hotel when you sang into the microphone?”

Moishey: “Hamalech HaGoal”. (accurate)
Tati: “And what happened when you finished singing?”
Moishey: “Everybody clapped and laughed.” (accurate)
Tati: “Why did they laugh?”
Moishey: “Because I bowed down to Hashem.”

Four and a half year old Mordche'la was struggling to maintain his senior position as his nieces and nephews (some older than him) were trying to control the play situation. When he realized he wasn't getting anywhere with the rambunctious brood around him, Mordche'la blurted out, “Ober ich bin der feter” (but I am the uncle).

THE 614th MITZVAH...
One morning my three year old requested pizza for breakfast. Moishey seemed scandalized and he lectured her: “Yitty, you don't eat pizza for breakfast. Pizza you eat for ‘melaveh malkah'.”

As is the norm in our community, many homes have cleaning help, most of them foreigners from European countries. As we struggle through the language barriers, very often we pick up some of their words, and they, in turn, resort to using our dialect. One day in school, Moishey's teacher was trying to explain to another student in the class the meaning of the word ‘rag'. Morah said to the child, “Do you have a ‘shmatta' at home?” From a distance, Moishey piped up to the teacher, “Oh, you speak Polish?!?!”

A couple of weeks into Chodesh Adar, Moishey's speech therapist in school started to introduce Purim by asking him this question: “Moishey, what is a megillah?” Moishey ignored her after 3 attempts at re-questioning. The therapist became upset and said to him: “Moishey, I will ask you this question once again and I give you 10 seconds to answer. You may answer anything, even “I don't know”. But answer something! Don't ignore me! If you won't answer you will have to go to time-out! Now listen: “WHAT IS A MEGILLAH?” Moishey's face lit up and he started to sing: “Ess zul shoin zein dee megillah, ess zul shoin zein dee megillah, Moshiach zul shoin kimen...”

My two year old daughter, Rina, has eyeglasses which she doesn't enjoy wearing. She usually pulls them off immediately (tying in back doesn't help; she'll pull them out of shape if necessary to get them off). I also wear glasses, but must take them off to read close print. One day, as I was holding Rina, I slipped my glasses forward on my nose to read a short item (over the lens). Rina promptly pushed the glasses back up into place. She knows where they should be!!!

I'm very glad that the psychologist on the Child Study Team at Binyamin's public school is a frum woman. Last week, during an evaluation, she asked Binyamin, “Why do people wash their hands?” to which he promptly replied, “Because we must wash Negel Vasser.” While it was not what she was expecting to hear, at least she knew it was an appropriate response!!

Five year old Binyamin quietly sat and watached his twenty year old sister preparing to go out. As she painstakingly applied her makeup, there was a knock on the bedroom door. “Don't come in this room!” shouted an excited Binyamin. “My sister is coloring herself!”

While my husband and I were in Eretz Yisroel, Moishey stayed with a wonderful teacher from his school program. On his last morning home before we left, I prepared his favorite school lunch - an avocado sandwich. Surprisingly, he started to snicker at it and requested a cheese sandwich instead. I was amazed. Cheeses don't make it across the threshold of my home because of Moishey's upper respiratory sensitivities. I started to explain to him that he can't have cheese, that I don't have cheese, that it's not good for him, etc. To no avail.

I argued in the negative, he responded by counter-arguing in the positive. Suddenly, Moishey announced in a very diplomatic tone of voice, “Mommy, you know what?!” It sounded like a compromise; I was thrilled. I responded, “What, Moishey?” He said, “Morah Shainy will give me a cheese sandwich!”

The following was written by a mother of a special child in response to a question asked by a school official as to why there weren't more parents of special needs children active in helping with the PTA. The official sent her a message, “Where are the parents?” The mother wrote this essay and distributed it to the entire PTA!

...They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed.

...They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

...They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet.

...They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube.

...They are administering medications, changing catheters and switching oxygen tanks.

...They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for test results to come back and wondering if their child will pull through.

...They are sitting patiently, in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ.

...They are waiting in long lines in county clinics because no insurance company will touch their child.

...They are sleeping in shifts because their child won't sleep more than two or three hours a night, and must be constantly watched, lest he do himself, or another member of the family harm.

...They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cutbacks of their own.

...They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive.

...They are struggling to keep a marriage together, because adversity does not always bring you closer.

...They are working 2 and sometimes 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent trying to do it all by themselves.

...They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything.

...They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive...

This article first appeared in issue #5 of Down Syndrome Amongst Us

Click here to see more articles in the Up Syndrome section
Click here to see the other articles in issue #5 of Down Syndrome Amongst Us