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Dear Editor,

Firstly, I want to thank you for your wonderful publication. My husband and I get a lot of chizuk from the articles and look forward to every new issue as it arrives. Keep up the good work!

Secondly, as the mother of a four-year-old boy with autism, I would like to write to Meira Samuels, the author of "Sleepwalking Through Life" in the Summer 2005 issue. We had a similar problem when my son outgrew his crib, as he jumps around his room for 2 to 3 hours every night before going to sleep, and he occasionally wakes up in the middle of the night or very early in the morning. We installed a baby gate in the doorway of his room and made his room a very safe area. His closet has a lock, so anything we want to keep out of his way goes in there. This way, I don't feel that he is locked in, as the door is kept open, but he is contained in a safe place. If it takes him a while to fall asleep, it doesn't matter.

In the middle of the night, too, we check on him, but we can go back to sleep ourselves even if he is up.

As he got older, he broke or climbed over conventional baby gates, so now we have a taller and stronger gate called "Summer Infant Extra-Tall Walk-Thru Gate." It costs about $60 and is available in Target or Wal-Mart. It is well-made; it screws into the walls, and he can't climb over it. We even take it along on trips.

I also find it helpful to have a safe place to put him sometimes when his behavior is too much to handle or when he is starting to get tired, usually halfway through the Shabbos meal Friday night, or during my daughter's birthday party, for example, when he was trying to eat everyone else's cupcakes and being generally disruptive.

Hatzlacha to you. It is a special nisayon to have an autistic child. His sweet neshama calls out to us and he is very loveable, but I do wonder how we are going to manage when he outgrows this gate!

Sincerely,
Rivka Kramer

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Meira Samuels responds:

Dear Mrs. Kramer,

Thank you for the response to my article. It is comforting to know that we are not alone in our struggles and that other parents are also able to see past the autism and gain tremendous nachas from their children, as we do with Yitz.

In terms of your suggestion, however, I have a few comments. Yitz's room is completely childproof, but even so, he needs constant supervision because he sometimes engages in fecal play. A gate would not work for us, as we can't leave him alone unless he's sleeping.

In response to your suggestion that the gate has added benefits at other times, I would say that each family works in different ways, each child is different, and each set of parents has different approaches to how they manage their family time.

I do agree that Shabbos meals, family gatherings, and times when you want to give your other children a little bit more attention can all be very difficult when you have a child with autism. Yitz has no safety awareness; he grabs other people's food, eats crumbs off the floor, and is on a very restricted diet, which only makes entertaining company so much more difficult. But despite these limitations, we try to make all of these times work for Yitz, and we involve him in every way possible.

We recently met my parents and siblings for a brief, extended family vacation. We were in a city that had kosher restaurants, and the plan was for everyone to go out to eat together, so there'd be no need to bring food along from home. I, obviously, had to shlep all of the food for Yitz, because of his diet.

When it came time for dinner, my husband and I assumed that one of us would stay back at the hotel with Yitz and the other would go to the restaurant with the rest of the family. But my mother ordered all the food "to go." I asked why they weren't eating in the restaurant and she and her husband both explained, "The point of this trip is for the family to be together. Yitz is part of this family, and if Yitz cannot eat in the restaurant, then we won't, either."

Instead of sitting comfortably at a restaurant, eight adults and eight children crowded into one small hotel room to eat dinner, so that Yitz should not be left out. We realize that this is an exceptional story, but it reflects a principle we're trying to live by. Yitz can and should be 'at home' in his home, and we can all make some adjustments to accommodate his needs.

Yitz's diet is extremely restricted, so we don't keep 'forbidden' food around the house for him to see and be tempted by. This means no challah, no potato kugel, no processed snack foods, and so on. But we make adjustments, because Yitz is part of this family.

We cannot presume that every family should make similar accommodations. We have only one other child in the house (so far, kinehora), and we realize that other families, for whatever reason, may find our approach completely impossible. It may not even remain feasible, in the long term, for us! But Yitz is a beautiful, bright, energetic boy who just happens to have autism, and we work very hard to include him in all we do.

May Hashem bless you and your family with kol tuv and rov nachas.

Sincerely,
Meira Samuels

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This letter is a response to a letter written by Malky G. in issue eleven (Spring 2005?) regarding her son with bipolar disorder, a different sort of special need.

Firstly, thanks for bringing up the issue in your very special magazine. I, too, look through each and every issue and search for some chizuk, some parent in my situation, some advice and encouragement.

I have a daughter diagnosed with bipolar disorder. I felt as though I was writing your letter. I felt sorry for you, but it felt good to know that there are others out there in the same situation, although I wish no one had to go through the life we do. You validated my feelings, which helped a bit. In addition to the mental health issue being shoved under the rug of our community, and the lack of resources and classrooms for our kids, there is a lack of support, both emotionally and physically.

The world at large has come to accept children with special needs. There are various respite programs, both government-funded and volunteer. It is a mark of pride to work or volunteer at Camp HASC, Camp Simcha Special, and similar organizations. A Down Syndrome child in the grocery is given a smile, and the mother or caretaker with the child gets a pat on the back. A child in a wheelchair is treated with respect; a medically involved child or a cancer patient (R''L) evokes our innermost feelings, and everyone reaches out to help.

However, our children with special needs are placed in a different category. They are labeled mishegoim. Neighbors won't let their children play with them. No one offers respite; there are no weekend retreats, reshab workers, after-school programs, mom getaways, support groups, chizuk gatherings, or special field trips. I am not complaining, and I would not want change places, G-d forbid. I just hope parents of special-needs children appreciate the community's acceptance and government programs.

In my world, small, day-to-day mishaps may initiate full-blown manic episodes or other problems. But there is no Family Care program should a family decide that it's in the best interest of the child for him or her to be placed.

We have to pay for any and all (even half-decent) therapies and counseling out-of-pocket, with no assistance.

My mom, who is the only person I've actually told about the diagnosis, and to whom I turn for support, thinks I can't handle a difficult child and that I'm looking for problems, labels, and more.

My neighbors think my child is off the wall and won't send their teenagers to babysit, and of course, I can't leave my daughter in charge of the other children, so I've been a hostage in my own house for the past few years.

If you know of any funding available for mental health issues, or any other resources, please advise me via Spirit! Magazine. I would love to get in touch with you, Malky, but I am not ready at this time.

Anonymous

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