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.”

In our previous issue, the following situations were presented. We’re pleased to bring you responses from readers in “our 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

Your magazine arrived just when I was in a quandary regarding a very similar issue. My 18-month-old daughter was diagnosed with a hereditary disorder not tested by Dor Yeshorim. We are keeping it a secret until our daughter is older, as it is not a visible disease when young, and we feel she should have the option to share her medical details when she’s older if she feels she wants to. I don’t feel as parents we have a right to expose her condition because she is too young to give her opinion. Many would disagree with my opinion, however, having met a young adult with cystic fibrosis in the hospital and discussing the situation with her, she admitted that she has lots of anger toward her parents for advertising her disease and making it public. Her mother might have done it for support, or because she felt she’s doing the best thing for her child, but this girl felt that every teacher, principal, neighbor and friend was privy to her private life. It was uncomfortable knowing that everyone knew every time she was in the hospital, as she got older.

At the time the magazine came, my sister-in-law was in middle of a shidduch. We debated over and over again if we should call my in-laws and discuss genetic testing. We figured that it’s such a rare disease what are the chances of them both being carriers? Well, after reading the letter in Spirit!, we went ahead and had them tested. Shockingly, both were carriers. Thanks to your letter they are now consulting with rabbanim as to how to proceed.

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?

Regarding the lady with two sons on the autistic spectrum, I hope I can contribute some assistance, as an adult autistic individual.   As a preface, let me note that to speak people of having autistic tendencies is somewhat off the mark. It's about as sensible to speak of someone as having Jewish tendencies.  Either one is autistic or one is not; just as one is either Jewish or one is not.   There are degrees of difference, of course, among autistics, just as there are degrees of difference among Jews.  There are some autistics who have only light autistic traits and seem almost completely normal.   But being autistic is being autistic.

Now, to the main question:
 
I would suggest that much of the boys’ behavior may be due to the synagogue atmosphere.  Are there a large number of people who attend, or is it relatively small?  Do they tend to "schmooz" or concentrate on davening?  Do the boys attend only sporadically, or regularly, at least for small periods?  The more often the first alternative is the answer, the more likely an autistic child will respond to it negatively.

If the boys do not regularly attend synagogue services, I think it is imperative they start to do so on a regular basis.   Don't start with Shabbat services--weekday minyans are good places to begin.  Especially with autistic individuals, it is necessary to become familiar with the location and routine, and to identify some regular attendees.   New situations equal chaos equal stressful situations.  Familiar routines and locales are much less stressful.    As they familiarize themselves with praying as part of a minyan, they will learn how to behave properly.  Then introduce them to Shabbat and Yom Tov services.  This may well take some time, but it is well worth it.  (But bear in mind the witticism that the autistic definition of extreme sports is a roomful of strangers.  It is very true.  Nothing is more stressful for me than the possibility of having to take part in an extended conversation, even with people I know relatively well.  And when strangers become involved, I tend to leave as quickly as politeness allows.)

I realize that this advice will be too late to help you this year, but I hope it will help you in the year about to begin. 

For the moment, don't be afraid to take your sons to shul, even it's only for the Torah reading and shofar.  You should apologize to no one for their behavior, although of course an explanation that your sons are autistic can be helpful.  And to those people who can not accept that explanation, remind them that the Master of the Universe made your sons the way they are, and if He does not object, why should they?  Then hand them a small kite and invite them to fly it after Yom Tov.
 
And if you honestly feel you can not bring your sons to synagogue with you, there are respite services available if you can't find a relative/neighbor willing to spend a few hours with your sons so you can fulfill a mitzvah.
 
May you (and all the staff and readers) be inscribed for a good new year.
 
Jeffrey Smith
Florida

We appreciate the helpful advice and suggestions received in response to Views From our Shoes. We now present the dilemmas of readers who eagerly await your input. Keep your sage advice coming! Click here to read them all

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