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Dear Esther Krausz, (Summer 2008 – Angelman Syndrome)

Thanks for sharing your story. My child does not have Angelman Syndrome, however, I have gotten tremendous chizuk from your story. The fact that you actually got a diagnosis after six years, gives me hope that eventually we will reach a diagnosis for my five year old son. We too have been running around from doctor to specialist to find a diagnosis in the hope that it will guide us to properly care for our child. He actually has similar symptoms as your Yides, but our doctors have ruled out Angelmans at this point.

May Hakodosh Baruch Hu give you the strength to deal with your beautiful daughter and the rest of your lovely family.

Genendy P.
Brooklyn, NY

Dear Spirit! Magazine,

Thanks for the most informative article by Liba Rivka Cohen, (Summer issue, Advocating for your Special Child). My son has been in a regular Yeshiva setting for the past several years. The phone calls from the principals and teachers have become more frequent over the years and the symptoms and signs have become harder and harder to deny. My son was definitely having serious academic, behavioral and social issues.

Over this past summer I finally had him evaluated by both special educators and psychologists. After getting a diagnosis which devastated the whole family, we have to embark on a new journey to educate this child. Your article came just in the nick of time. The clear guide to advocacy and more is just what I needed. I don’t feel so alone at this time!

What hashgacha that I picked up the magazine for the first time while browsing the Judaica book store!

Thank you Liba Rivka Cohen and Spirit! for being a source of information and chizuk.

Shaindel F.
New Jersey

Dear Elisheva Rosenfeld,

Thanks for writing your personal perspective on resource rooms. I too, have been going out to the resource room for the past four years. For me, it’s been very difficult being the only one in my class going out for certain classes. It’s taken a toll on my having friends, and feeling part of the classroom. Whenever teachers tried making me feel comfortable, I felt like there’s no way they understand. When I read your article, I felt like it’s coming from someone who has been there, and makes me look at this in such a different perspective.

Thanks so much for being brave and sharing your story publicly!

Anonymous,
Monsey, NY

Dear Spirit Magazine,

This is just a short email to let you know how much I enjoy your magazine. I do not have a child with a disability; however, I have a seven year old with Leukemia and also feel the stigma that parents of children with special needs feel in relation to the “real world”.

The article which spoke to me most was the poem by Anna Jaworski on “What it means to be the parent of a sick child”. It is so beautifully written and has such a positive tone.

Thanks for the inspiration!

P. L.

Dear Chaya Leah, (To My Dearest Friend Faigy – Summer 2008)

I’m not Faigy, my name is Ruchy. But somehow Faigy, Ruchy, Shaindy, or whatever our name may be we can all benefit from hearing the message from the other side of the fence. It meant a lot to me to see the perspective of a friend. I’ve been struggling with the fact that my friends have not known how to react to the birth of my special needs child, and don’t always inquire about her well being or they inquire too much.

This letter gave me some food for thought and made me rethink how I judge my friends’ reactions.

Faigy, you are lucky to have a friend like Chaya Leah, cherish the friendship!

L. L.
East Coast

To the Editors of Spirit!

The Open Letter article, by Bracha N. Findgood opened a can of worms in our household and extended family. The topic it led to was Judgment.

Why is it that when parents make any decisions for their ‘typical’ children, whether it’s schooling, camps, friends etc. we view it that the parent knows what’s best for their child. Whereas when we make a decision for our child with special needs it becomes a call for public judgment??

My daughter has a severe physical handicap due to a genetic defect. She is wheelchair bound and gets sores from sitting in one place for an extended amount of time. We have decided to stop using orthotics on her legs as they will not help her walk – we have accepted the reality that she will bederech hatevah never walk, and why add to her skin sores and make her more uncomfortable.

The comments we get from people, even parents with special needs children is astounding. From “you don’t care that her feet will get more rigid” to “if you don’t believe she’ll ever walk, trust me she won’t!” (As if it depends on my believing in her!)
We obviously consulted with therapists and doctors before coming to such a decision.

Another judgment call is by my mother-in-law who in her best intentions thinks we are ‘destroying’ our life by raising this child. We recently modified our home to make it handicapped accessible. We had to take away a bedroom in order to build an accessible bathroom to accommodate my daughter’s needs. When my mother-in-law and extended family saw that my two sons had to give up their bedroom and move in with their teenage brother, she flipped out and said we should’ve placed our daughter in a group home or chronic care facility rather than have our healthy children live in cramped quarters.

Don’t you believe we know our children, and are aware what’s best for them? My sons are growing up better people having given up their bedroom for a sibling. We view it as being mechanech our children to be selfless. When will the judgment of others stop?

Or the teacher that criticized us for going out of town for treatment of our child. She thought we have to consider our healthy children that won’t have their mother around to do homework with them for three days as their special needs sister had a life-saving procedure. Instead of offering to help our daughter out with her homework, or offering to give her a couple of days off of homework, we got criticized…

Parents, in-laws, friends, cousins, neighbors, teachers, and principals…

Try putting yourself in the boat of those you are judging, until you’ve been in the situation of others there’s no way you can see the full picture.

T. R.

My son was recently diagnosed with Asperger’s syndrome. A friend of mine brought me the magazine which featured Asperger’s syndrome on the front cover. I immediately read the article and sat down and cried. This was just what I needed! What a comprehensive article covering each and every aspect of this disorder. I received tremendous chizuk from the rest of the articles as well. Thank you Tziri Frank for your Frankly Speaking article which makes me chuckle time and time again.

F. N.

As a sibling of a child with special needs I was really inspired by the article written by Y.P.F. Wow! What a powerful message comes through! Thanks for sharing your story.

A. Sibling
Lakewood, NJ

As a parent that just dropped off her son at Camp Simcha Special yesterday, the article Tears at the Bus Stop (Summer 2008) made a serious impact on me. I was the only one in tears when I left the parking lot. My son was on a high as his counselor held him on his shoulders and danced to the loud music. Melanie Kwestel touched upon so many topics that were important for me to read. I have always had an issue with letting go. I think I’m the only one that understands my son’s needs and am familiar with his medical care. This is the second year I am truly letting go. Last year I cried and cried when I left the bus stop. I felt irresponsible letting such a medically involved child go to camp. I felt selfish that I needed a break and thought my child would miss me so much he would be continued from P. 40

By this summer, the tears are tears of joy, both for me and for my child. We now are familiar with the camp and see the care, devotion, and thought that goes into every detail for the benefit of my child.

He will enjoy two weeks of sheer bliss, two weeks of dreams coming true while cared for in a high-tech medically supervised camp, while we as a family will rejuvenate from the stress of everyday round-the-clock-care.

Camp Simcha Special is a dream come true! Not only for the campers, but for the parents and siblings of these wonderful children.

Anonymous

Spirit! thanks all of our readers for their letters and comments. The editor reserves the right to edit letters for content and/or space, and will withhold your name upon request. Due to the large number of mail, we cannot print all letters received, but appreciate your feedback nonetheless.

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