I'm still chuckling over this morning's breakfast episode. Moishey developed a new habit of twirling his 'payos' while he eats, thus causing his 'payos' to be oily and full of food. So, this morning as he was doing it again, I went into a long tirade of logical rhetoric. I lectured and lectured, and Moishey listened and listened. As soon as I finished, Moishey looked directly at me and started to singsong, "Ba-ba-ba-ba-ba…" My 10-year old asked me afterward how I contained my laughter. Good question. Realistically, if this would have happened with another child, a mother's spontaneous reaction would have been to condemn this as extreme 'chutzpah'. However, in Moishey's case, I was inwardly happy about his spunk; which doesn't go to say that all 'chutzpah' and misbehavior coming from a child who has Down syndrome is acceptable. Still, I find it's important to retain a sense of humor.
Which leads me to my message: Frequently, the parents of 'special' children are given opportunities to meet, be it at support groups, lectures, or even private social affairs. I have noticed, time and time again, that when many of these parents are questioned about their family's well-being, they will always retort to talking about their 'special' child. The content of the response is usually what turns me off: The talk sounds very much like the child's IEP (Individualized Education Plan). Every therapy session is reviewed, every goal is wistfully discussed, and not detail is missed. All of a sudden we sound like technical robots who can think of and talk about nothing else. We forget that before we became a "Special Mom" we were first a 'loving wife, devoted mother, concerned neighbor, loyal friend, and caring family member'. Let us continue to prioritize.
I remember distinctly that at one of our Otsar Mother's Support Groups, our leader asked each mother to explain what draws her to attend these meetings. The answers were varying, including some shoulder shrugs. When it was my turn to respond, I said that the group gives me an opportunity to brush up on the latest "Down Syndrome News" in a condensed fashion. Therefore, instead of spending my days and evenings on the telephone with individual parents, discussing doctors, schools, evaluations, therapists, etc., I can spend more time doing what most 'normal' moms are doing during that time. I also enjoy a good piece of gossip ( I do try to keep the pieces small) shared with my friends on the telephone. I also enjoy simple laughs over pizza lunches. I still have my 'normal mom' needs.
So mommies, the next time we meet on the avenue, or at a 'chassanah', and I inquire about your family's well-being, please tell me that your daughter has become engaged, your son had a baby, your youngest child got 'payos', you lost 20 pounds, how your 'special' child is doing, etc., and let's move on. And please, by all means, let's have a sense of humor. It will always serve us well, especially in dealing with our 'special needs' child.
I had initially intended to have this issue in print by November. However, family 'simchas', family crisis, and Moishey's chicken pox (followed by his little sister's too), delayed me some. I was anxious, but I remembered the silent contract I had made with my husband and myself at the start of "My Magazine Career": I will never neglect my family because of the magazine, and I will push myself only to a certain limit. No sitting up nights at my computer until wee hours, and no missing my children's school performances, and no 'no-show' dinners because of the magazine. So, here we are, in mid-winter, celebrating Issue #4.
I would like to take this opportunity to thank my readers for your wonderful, positive feedback. Hearing from you all is my best reward and pay for my work. Actually it's the only pay, because financially I'm working at a tremendous deficit. Which leads me to my next opportunity of asking my readers: Please do not pass your magazine around to family and acquaintances. I rely very heavy on the number of issues sold. It makes my distributor want to be more involved, and it makes individual storekeepers more eager to carry the magazine if they have demand for it. Like I was told by somebody 'in the line': "Magazines are the black sheep in Judaica stores". The retailer does not earn so much on the magazine, therefore he does not want to 'patchka' too much with it, not devote too much shelf space. In other words, the store will not present you with a $3.00 magazine tied in ribbons and frills. It is individual consumers who have to demand it of the retailers. So, if you want to be a kind relative or friend, please go out and purchase my magazine, you yourself tie it in ribbons and frills and give it as a gift to the next potential reader.
In Williamsburg, Brooklyn, the magazine is sold at Rafieh Pharmacy on Lee Avenue, Einhorn Judaica Store on Lee Avenue, and Division of Judaica on Division Avenue near Roebling Street. In Monroe, New York, the magazine is available at Kiryas Yoel Pharmacy at the Forest Road Shopping Center. In all other Jewish communities, the magazine is available in Judaica stores, distributed there by Feldheim Publishers and Distributors.
I have chosen a theme for this issue, which is very much the Special Education theme of today. It is the controversy lingering behind (and in front of) the 'Mainstreaming, Inclusion,….' Beliefs of today. My gut feeling, as you will see in my article, (page 36) tells me that there is a certain sense of denial among parents who so blindly push for inclusion, without really weighing its advantages over disadvantages. I recently ran a 'booth' at the Resource Fair sponsored by the Board of Jewish Education for Special Education. It was a most enjoyable and inspiring event, and I finally came face to face with some of the people who I had only had a telephone/letter writing communication with. But, what really ticked me off was meeting some parents of children with Down syndrome and sensing their defiance and denial of their child's true needs. Mothers whose children were only 3 years old and were aging out of the infant home-based programs, were all geared up to verbally slug it out with the top people in the Yeshiva administrations. These mothers want to force the schools and yeshivas to accept their 'special needs' child blindly. However, when you start to discuss with these parents what the child's realistic classroom needs are, they don't know from beans about what's going on!! So what's this pushiness and aggression all about? I firmly believe that it is a special 'zechiya' to be able to have my child in a special ed program. His needs are being fulfilled beyond human comprehension. And those teachers and staff!!! I really think they are 'malochim' dressed in the clothing of human beings. Our children ARE different; they do need the specialized education. LET'S GET REAL!!!
I would like to relate an 'inclusion' episode which occurred recently with my '7-year old son who has Down syndrome':
Moishey does not attend shul with my husband. He does not know how to 'daven' from a 'siddur' yet, and past attempts at having him in shul have proven unsuccessful. Recently, however, a new shul was built right across the street from where we live. The shul is spacious, not overcrowded and elegantly constructed. It's convenient location prompted my husband to make another attempt. So one recent Friday night, I dressed Moishey beautifully and he gleefully went to shul with Tati. Later, my husband related the following to me: As the congregation was beginning to sing "Le'cha Dodi" Moishey suddenly noticed the raised "Aron Kodesh" with its elegant double-tiered, gilt-edged platform. He excitedly exclaimed to my husband, "Tati, look a stage!" And right then and there, my darling 'tzaddikel' marched up to the "Aron Kodesh" and started to perform an act from one of his favorite video characters (Barney, to be exact). My husband grabbed him and brought him home! Nu, isn't inclusion "always" wonderful?
In my next issue, 'Im Yirtzeh Hashem', I would like to write about "Alternative Approaches to Conventional Medicine in Treating Our Special Children". Please submit whatever (concrete) information you may have, or write about your experiences, whether they were negative or positive.
Also remember the "Yiddish Naches" center page. Keep those photos coming!!!
This article first appeared in issue #4 of Down Syndrome Amongst Us