I know of only one way to answer the question of what are the positive changes that have occurred as a result of having a child with Down syndrome, and that is, the way I view my 'Aishes Chayil'. When Terry was running our house of six kids (3 boys/3 girls up to the age of 15) I was impressed, but was she really using all her talents to their best? I mean, let's face it, her Master’s Degree in LD and ED, with a certificate in 'Birth to Six Months' was not getting used that much. But then came Shira Devorah Chaya, our surprise present from G-d, our seventh. Since day one and hour one after Terry's seventh caesarean section she’s been on the phone arranging everything. At first, it was hospital transfers, then oxygen tank refills, monitor downloading and reading of the reports, and all the doctors' appointments and therapist/therapy appointments. All of this in spite of a bad thumb and wrist which has been in a splint cast since a few weeks after the baby's arrival.
Yes, I see positive changes; they are manifested in my wife, partner and friend. This woman didn’t just do more of the same when it came to parenting Shira. Terry created an entire environment for Shira’s growth, while maintaining goals of success beyond the social parameters of what is reasonable to expect of our little angel.
Thanks for all that "Down Syndrome Amongst Us" does to keep us focused.
Right after my marriage I embraced 'balabusta'shaft' with a passion. I guess it was my final revenge against my lazy, do-nothing, baby-in-the-family, single years. Whoever has lucked out in becoming acquainted with a perfectionist knows the pattern. I became very involved in my home, in my marriage, and in my children. A child whose skin didn’t glow and who didn't smell of baby lotion from a distance of three feet was just not clean enough. A sink faucet that did not shine like #925 sterling was unacceptable. After a while a perfectionist becomes so wrapped up in her way of doing things that NOBODY else can do it this well. We'd rather do everything ourselves because only we can perfect it. Eventually, we border on 'k’firah'. We tend to forget that there is a Higher Power in control.
With the birth of my special child I was shaken back to reality; my children may 'shmek', my faucets may gleam, but Hashem is still running the show and He will decide my fate.
What also changed was that I no longer was an independent, self-sufficient human being; I now depended on people so badly and that was a bitter pill for me to swallow. The responsibilities early on were overwhelming; my appointments calendar looked like I was the CEO of an international corporation. Evaluations, therapies, and medical emergencies had become the norm. Washing a load of laundry now became a substantial project that was begging for a decent time slot. I was no longer able to depend upon courteous offers of help, which in the past I declined. I now had to request babysitting help, accept meals once in a while and hire a part-time housekeeper. Standing and polishing silver for two hours jumped off my list of prior priorities and quickly found its way on other lists. It was all so humbling.
Amidst my sorrow my sweet neighbor said to me one day, "Do you know that your special child is not only a challenge that the "Aibishter" sent to you? It is also the community's challenge to see how we will turn out in our attempts at ‘chesed’. If you will not allow yourselves to be helped, then you are depriving us of our 'z'chusim'." That statement made a tremendous impact on me and I immediately changed my mentality and 'hashkofa'.
Yitzy has affected our lives in many positive ways. We have grown so much in sensitivity to others in any situation. We have made many, many friends on a much deeper level because we have been through much together.
Yitzy also gives us a tremendous amount of joy and love and unlimited hugs and kisses. We are truly privileged to be his parents.
Taking care of a special needs child with multiple handicaps has made me more aware of the most simple body functions that we have and take for granted. When you try to teach a special needs child to visually focus on an object, to grasp, to sit down, and you break every function into smaller pieces, you become more aware of every single 'bracha' that you have (which we would otherwise, without taking care of such a child, never stop to think twice about it).
There have been three positive changes in our lives that have come
about as a result of our special needs child: