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 Editor,

I look forward to each and every issue, and read it cover to cover without stopping as soon as it arrives.

My daughter, age 8, has a diagnosis of autism and seizures, which started at the same time that she got her MMR shot.  Soon after the shot, she got her first seizure. Since that time, she has lost most of her speech, eye contact, and other vital function.

I’ve discussed the matter with two neurologists and my pediatrician.  They all claim my daughter had a predisposition to autism, and the high fever she had following the shots was just the trigger.  My argument is that had she not received the shots, her autism wouldn’t have been ‘triggered,’ and she’d have remained healthy.  The doctors claim that any mild illness would have brought it on.   Others say the timing is coincidental, as autism generally rears its ugly head at 15-19 months, which is the time the vaccines are given.

I now have an 18-month-old daughter, and I’ve refused to let her have vaccinations. The school she will attend, IYH, will not accept unvaccinated children. 

I’m not seeking to bring up the world-wide debate linking vaccines to autism. I am seeking advice on how to deal with the school district, as it is mandatory to have all children vaccinated prior to school attendance.  The school will not accept her unvaccinated.  How do parents who don’t vaccinate deal with the system?

C.L.

Dear Editor,

I find myself reading your magazine with increasing frequency lately, and I always derive tremendous chizuk to help me deal with two of my sons, ages 3.5 and 5.5. My younger son, Shmuel, has an autism spectrum disorder, and on the advice of a clinical nutritionist, I just put him on the GFCF (gluten- and casein-free) diet. The nutritionist also restricted his consumption of corn, soy, and foods containing phenols and salicylates, and she gave me a urine test kit and hair test kit to send to the laboratory. She wants me to collect his first morning urine, and she gave me a bag with which to collect it. As my son is not toilet-trained, this has proven very difficult, and I spent an exasperating morning trying to get him to urinate into a sterile cup before he had anything to eat. Can you offer any practical advice on how to deal with this problem?

Laurie Minchenberg

To the editor of Spirit! Magazine,

Thanks so much for a wonderful, most informative magazine.

My twins, age 4, are both developmentally delayed. One was recently diagnosed with cerebral palsy, and one is as yet not diagnosed. They are both non-ambulatory. I have looked into double special-needs strollers, but I have yet to find one that won’t look like I’m leading a special-needs parade. It’s impossible for me to wheel two separate wheelchairs, and I don’t have a second pair of hands with me most of the time. They also don’t fit into regular twin carriages; I’ve tried them ALL.

Both children do not have head control; they require full support in all areas. If anyone has been in this situation before, I’d appreciate any advice in obtaining a double stroller or wheelchair that would free me from being hostage in my own home.

Thanks,
Anonymous

Dear Editors,

I’m a mother of two children with developmental disabilities. I am involved in various online support groups, and I attend a local MDA support group. I am looking for online frum support groups, or phone support. The women I network with are wonderful moms with loads to offer, but they do not understand certain issues that we, as frum parents, sometimes face. Whether it’s not being able to take a wheelchair-bound child out on Shabbos, or dealing with various care appliances on Shabbos and Yom Tov, or the challenge of providing a Jewish education for an intelligent child who happens to have multiple disabilities.

Thanks for a magazine that fills a need that the frum, developmentally disabled community has dealt with for so long. If anyone has any advice, I would really appreciate it.

Editor’s note: There is a wonderful e-mail support group with over 75 frum moms registered. You can sign up at http://groups.yahoo.com/group/specialfrummoms or send an e-mail to specialfrummoms@yahoogroups.com. You can also visit our Web site at www.spiritmag.org

Dear Spirit! Magazine,

My daughter is six years old. She was born 16 weeks premature and has significant motor delays. My daughter’s physical therapists feel she would benefit from a modified Kidcart with lots of support. I am having major issues letting them order the wheelchair, as I am just not ready to walk in the street with a wheelchair-bound child. Until now, I got away with a home-adapted carriage, but she’s gotten too big, and she needs more support. Any advice on how to break through this barrier and do what’s right for my child? I’m sure many moms have felt like I do, and I would appreciate some supportive advice. Or, if there is any wheelchair out there that is less blatantly handicapped-looking, please let me know.

Thanks,
Shayna C.

Dear Editor,

I have a four-month-old child who has a cleft lip and palate, which have yet to be corrected for various reasons.

We’ve been having a very difficult time feeding her; we’ve tried several different bottles.   Does anyone have any advice on different bottles other than the Haberman Feeder, or different feeding techniques that work for the cleft palate / cleft lip baby?

Thanks,
Anonymous

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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