Was that a pimple that appeared, in all its glory, on the side of Moishey's forehead? Was it followed three days later by one on his nose?
Transitions, transitions. My Moishey, my baby, is growing up. It is very bittersweet for me. Doctors and developmental specialists agree that children with mental retardation and/or assorted disabilities, will mature younger and more rapidly physically than they do developmentally. That spells “kids in adult bodies”. Certain conduct and distinctions, which in the past could have been diluted with ‘cute' behavior, are no longer acceptable. The word “cute” itself will soon have to be eradicated from our list of ‘Moishey adjectives'. This hurts. My sweetest, baby-faced, cuddly son, who is never farther than a heartbeat away from my thoughts, is becoming a little man. As much as I am having difficulty dealing with this transition, so is he. What comes so naturally to us and to our “normal” children is so elusive and painful to our special children. As we compare Moishey's development to that of his siblings, and as we reminisce about the days when he required extensive physical therapy to learn to walk as a toddler, we are again now at a new crossroads. We need to take this new adolescent by the hand and show him the way from here to there. We need to explain how our expectations are changing; and, at times, he will be bewildered by our new requests.
This transition has resulted in some behavior problems which on occasion has us wringing our hands in distress. Of course, Moishey will usually resort to one of his quips which will reduce some of the tension. For example, I recently had to resort to applying my hand firmly to the seat of his pants when nothing else had worked. Moishey turned quite angry and said, "A thirty-seven-year-old woman (why, oh why, did I ever reveal my age to him?) should not go around ‘potching' kids in this house!" Forget about being upset at him!
While we mull over the issue of who should be our chosen “soifer” (scribe) to write Moishey's “tefillin” for his Bar Mitzvah in a year and a half, IY"H, Moishey gleefully looks forward to becoming a “bochur” for three reasons: to have “tefillin”, a hat, and a beard.
So, here I am, crying over what we have always prayed for; to see Moishey growing healthy and giving us “naches.” And as I relinquish my tight grasp on him, physically and emotionally, I wipe away a tear as I thank Hashem for answering those prayers. I then burst out laughing because this marvelous transition exemplifies true life. We are one big Rubik's cube. When two squares are finally coordinated, another four are mismatched. When I now see our hopes and dreams becoming reality, I cry over having to “let go”. Go figure!
So much has happened since Issue #9 was published, that I regret not having kept a diary. Correspondence from my readers always has a special place in my heart. However, I must elaborate on my announcement on page 27. Please, dear readers, try to contact me only via the written word; if possible, please type.Unfortunately, I have received so many messages on my fax and answering machine that are simply unreturnable. As an example, there was a message on my answering machine from a woman in Israel who was surprised that I accepted advertisements from manufacturers of nutritional supplements for Down syndrome, when those supplements are non-kosher. To this sweet woman, whose telephone number was erased at the end of her message, I say, "Todah (thank you) for bringing this issue to light. Please understand that I am not responsible for the advertisements in DSAU. I would assume that in the case of a product that will be ingested, every interested individual will check out the kashrus, as we do with everything else we put in our mouths. I remember clearly when I was much younger and there weren't all the kosher vitamin manufacturers of today, people would consult with their own Rabbonim and Balei Machsher, to review ingredients of supplements they wished to take. I should hope and assume that my readers would do the same."
Even as I am writing now, I am greatly pained over some recent events in our community. My husband and I have thought the issue of “giving up” babies with Down syndrome had already become “passe”. We have entered the twenty-first century, people are more educated, resources and services are easily available, and families are able to cope a lot better than years ago. How shocked we are by the recent rise of Down syndrome births and Down syndrome ‘giveaways'. I have never personally initiated calls to new parents and never offered unsolicited advice. Therefore, when my husband and I were approached by new parents and relatives seeking “justification” for babies being “given up”, we clearly explained our position. As a result, the following events have been most painful. I do not want to dwell upon the past too much because then I will be guilty of ‘If you look back, you'll soon be going that way.' However, I certainly wish to clarify some very deep misconceptions.
Moishey is the second child in our family. He was born five years into our marriage. His older sibling was three-and-a-half-years old at the time. As a relatively new mother, I was an amateur, and I was constantly seeking to learn more. Suddenly, I gave birth to a child who not only sapped me of all my learned parenting skills, but his birth had thrown me into a strange and frightening world. Contrary to ‘public' opinion that I had ‘young energy' and lots of time on my hands, I was weakened by fear, and still trying to ascertain how to simply run a family of four.
I remember so clearly taking Moishey for music therapy to his early-intervention center. The agency used to send a car service from Flatbush to Williamsburg to pick up their pediatric clients and caretakers. I was always the only mother who accompanied her child. The other children were all brought in by older siblings, friends of the family, etc. At the local pediatrician's office, I also always used to meet Moishey's young friends with their older sisters. Where was Moishey's half a dozen (or more!) older siblings, helping out, taking him for therapy, providing therapy themselves, or establishing a stimulating household?! Non-existent! How intensely upset I would grow when I would attend the local support group and the mostly forty-year-old-plus women would say, "Oh, Sarah, how lucky you are you still have ‘yinga kochos' (energy reserved for the young)."
My point now is not to cry over the past and pat myself on the back for having overcome difficult times. The point is for all to develop a proper perspective, and herein lies the message Raising a child with special needs is not simple not by far. However, it is NOT IMPOSSIBLE!
The latest “compliment” my husband has received on my behalf is, "Oh, what your wife has put into your Moishey is unequalled. Most busy mothers cannot do that!"
Instead of feeling smug, I am again upset. There were many times, probably totaling hundreds of hours, when Moishey would just sit and self-stimulate with various objects because there was nobody available in my very young family to re-direct him to more productive activities. Where was I? Not always available. I was prioritizing! As important and as beloved as Moishey was and is, I have never allowed life to stop because of him. Of course, I made changes to accommodate his unique needs, but I still continue to nurture the other needs of the rest of my family. Yes, sometimes that meant Moishey had indulged in inappropriate behavior, and I couldn't stop it. I had a choice! I could either make myself sick or just come to terms with my own abilities and limitations. I chose the latter. For my family, it has been a proper decision.
So, for those of you women who consider yourselves ‘over the hill', don't! Count your additional blessings that you are surrounded with all your additional children to help you in this new venture.
I still wonder what this senselessness is that sometimes parents of children with special needs make a ‘project' out of the child, and will settle for nothing less until the child reaches levels of being ‘gifted'. Do we push our able children like that?
There are specific programs for normal child development too. It is not only parents of special needs children who busily enroll their youngsters in this therapeutic program, or for that kind of treatment. There are parents of normal children who are also taking enrichment courses. I, personally, know of a pair of grandparents who, after their first grandchild was born, enrolled in such a course. The purpose is to encourage the child's brain to be challenged to its utmost. Four-month-old babies have flashcards placed in front of their eyes several times a day to maximize I.Q. potential. As the child grows older the demands of the program increase in rigidity.
Why am I sharing this with you? Because this is what some people do for their healthy children; however, most do not opt for this way-of-life for it is not possible. Yet, when it comes to special needs children, parents will resort to the impossible, unrealistic, unexpected…and if new parents believe they really cannot undertake this self-imposed difficulty, they throw in the towel and give up their babies. Therefore, let us all learn to prioritize and love our children the way they are and for whatever they can do, and let's not dwell on ‘what's missing'.
Equally disturbing, is another ‘compliment', "Oh, your Moishey is different he is so beautiful and charming. Most kids with Down syndrome are not so good looking…" Hey, guess what? Since when do we decide to keep or dispose of our children according to their looks? Yes, my family is extra-blessed that Moishey is so handsome B'H. However, I've seen large families where none of the children are blessed with good looks (and nobody thinks of sending them anywhere), and then along comes another child in that family, who happens to have Down syndrome, and all of a sudden people are saying, "Oh, how unfortunate. That ‘Downy' child is really so bad looking." Moishey is indeed a wonderful child not because we made him so, but because we believe in him and accept him for who he is and not for what we can make of him.
My apologies to my readers, many of you ardent and devout ‘chassidim' of DSAU. I know that a year is a long gap between one issue and the next. However, I have been active on so many other fronts involving our special children, that I just couldn't pull myself in more directions. It also has not been easy trying to typeset this issue with the constant keyboard assistance of my toddler. So, I beg your pardon and with the help of Hashem, I will try to speed things up a bit. After all, I am only a Mommy and I do want to maintain the personal touch that the magazine has become celebrated for. I have had offers in the past to throw myself under a board of directors and perhaps make this into a very efficient and financially gratifying proposition. I refused. This magazine is my ‘labor of love' and even if I cannot publish as frequently as I'd like to, I still prefer it my way slow, and with the warmth of my whole heart in it.
Thank you, my readers, for your untiring support.
This article first appeared in issue #10 of Down Syndrome Amongst Us