Spirit! Magazine wants to hear from you! Views from our Shoes was created to give you, the readers, an opportunity to seek advice and share the tips that work best for you and your disabled child. Please e-mail your questions or answers to editor@spiritmag.org,
or send them to: Spirit! Magazine 48 Scotland Hill Road, Chestnut Ridge, NY 10977, and let us know where you are writing from. Whatever the disability or challenge that your child faces, this is your forum to exchange suggestions and ideas, or seek solutions to situations from others in “your shoes.”
Dear readers,
I am absolutely livid, and am not writing this in a moment of anger, but in deep pain. My sister has a six-year-old child with a medical condition that is hereditary. Her child was diagnosed at birth and my sister and brother-in-law made a decision to keep the condition a secret. Of course, our family was aware that our niece was sick, but my sister kept on saying that it was preemie-related and never gave us any details. The good sisters and family that we were, we never probed. We simply left an open door if she needed to talk.
Fast-forward five years; another sister got married and gave birth to a very ill child. It ended up being the same disease that afflicts my niece, for which SHE COULD HAVE BEEN TESTED prior to marriage and prior to giving birth. Now for those that will answer that it’s bashert, please don’t! Obviously, it’s in Hashem’s hands. We truly believe that! This is not about belief, this is about responsibility. How irresponsible can parents be? How can you deny your family the opportunity to get tested, and to avoid going through the agony you are, for selfish reasons?
For our family, the damage has been done. For those of you out there who are keeping secrets like this, you have a responsibility to share at least the minimum information if testing is indeed available and the diseases avoidable! I believe my sister was in deep pain, and couldn’t share it. Sometimes, part of the challenge is growing up to do what’s right.
PLEASE, don’t allow another person to suffer.
Anonymous
Dear Editor,
My two sons, ages 12 and 14, have autistic tendencies and hyperactivity. When they come to shul for shofar blowing, on Simchas Torah or any other time, they are extremely disruptive. Last year, we found a special “childrens’ minyan” for shofar blowing, where parents would tolerate noisemaking and immature behavior. However, the comments received from the ladies there regarding my children not being brought up properly pains me until today. Rosh Hashana is around the corner, and once again, I’m dreading the upcoming situation. All day Yom Tov, I am at home watching my two sons. I am michuyav to hear shofar myself, any advice on how to get through the holidays?
Dear Editor,
Chol Hamoed in our community is a time when most families plan extravagant trips with their families. Ever since school started, my children hear about their friends’ vacation plans, be it Hershey Park, Niagara Falls, or Busch Gardens, etc.
My oldest child has Canavan’s disease and is medically fragile. We cannot take her outdoors and have limited and unreliable nursing coverage, especially on holidays and weekends. My children deeply resent the fact that we cannot enjoy major trips like all their peers. How do we explain to them that this is not feasible for our family without them resenting their disabled sibling?
Dear Editor
I have a 3-1/2 year–old daughter with a severe neurological disorder. Her official diagnosis is Partial Agenesis of the Corpus Collosum. She is generally a well-behaved and content little girl. However, recently, we’ve found that she cannot fall asleep at night until about 11 or 12 o’clock. When she finally does fall asleep, she wakes up during the night and stays up until the early morning hours. We tried giving her Melatonin and Risperdal, but none of them worked.
She is disrupting the entire family’s sleep and nobody can function normally in the morning. Has anyone had a similar situation, and did you find a solution?
B.F.
Brooklyn, NY
If anyone wants, they can respond directly to betty8169@aol.com
In our previous issue, the following situations were presented. We’re pleased to bring you responses from readers in “our shoes.”
Dear Editor,
I have 8-year-old identical twin girls. One of them had meningitis in infancy, which left her deaf. They are in the same school and look like two peas in a pod: thin, tall, and breathtakingly beautiful, capturing the eyes and interest of the entire student body.
The twin that’s deaf naturally needs loads of intervention, therapy, and care, and she is the center of attention in her class.
Her twin sister is having a very difficult time with all the attention and care her sister gets. Being that I live in a small community, with only one Jewish school and no parallel classes, separating them is not an option. Has anyone ever been in this situation, and does anyone have advice on how to deal with the jealous twin? This situation is affecting her social and emotional well-being.
I thoroughly enjoy reading your magazine and I feel that people from all walks of life can benefit from your quality material.
Dear Blessed Mother of Twins,
Wow! What a Kiddush Hashem that an entire class of 8 year–olds has the sensitivity to understand the needs of a disabled child!
When I was a schoolgirl, there were twins in my grade, one of whom was similarly disabled. I remember that although we classified them together, each of them knew their own uniqueness. They viewed themselves as different personalities. Although twins might be identical, their intrinsic being still remains totally different. It is important for each of the twins to know their own intrinsic value and uniqueness.
This leaves little room for jealousy. The hearing twin should understand that she is one of the “givers” in this world. It is part of her tafkid. Explain how much pleasure she’ll derive from giving, including giving to her twin sister, since she is more able-bodied. Furthermore, tell her how blessed she is that she can hear and that her sister might need extra care and support, as she is disabled.
On the other hand, your deaf daughter should never view her essence as being a deaf child, but rather someone with the tremendous ability to overcome obstacles. For although she might enjoy the attention she’s getting as a deaf child, as she gets older, she might not recognize her true value, especially when she’ll meet up with new people and new situations.
In closing, I want to express my sincere respect for people like you for being entrusted with your task and living up to it.
Thank you,
S.S.
Dear mother of twins,
I, too, am a mother of 12-year-old twin girls. Sheva and Shana were born 11 weeks premature, resulting in Shana being affected with cerebral palsy. She ambulates with the aid of a walker and is ka”h very bright. We live in a small community with only one Jewish day school. They are in the same, small class and share the same friends.
Our way of dealing with the jealousy issue was never to involve Sheva with Shana’s care. I pay a classmate to help her with her book bag and ask others in the school to help her on and off the school bus. I make it my business not to burden Sheva in the least. The girls love each other – as sisters – without being dependent on the other’s care.
Good luck!
F.G.
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