I was sitting at a Bar Mitzvah, when a guest sidled up to me. We share mechutanim and she is a sweetheart of a woman. She is employed in a professional capacity and works with special needs children. As occurs frequently, many people are curious about Moishey. I like to answer all questions; it educates society about our children with Down syndrome. This woman, however, had different questions. Hers had professional undertones. After having observed Moishey at our son’s wedding two years ago, this therapist wanted to know what the trick was behind his excellent tongue control. I told her I wasn’t sure whether our homegrown initiatives were responsible for his good oral muscle tone, but I would tell her about it anyways. Her eyes were popping as I took her, and myself, down memory lane to when Moishey was a baby and we were up in the country in a bungalow colony. Playpens were still in vogue then and Moishey spent a big part of his baby/early toddler days in the playpen outdoors, soaking up the sunshine and fresh air and watching the world go by as he played with his toys. He melted the hearts of all who passed and everybody stopped to smile to him. It was an excellent opportunity to involve everyone in the bungalow colony to help with Moishey’s development. Thus, I asked all adults, and taught all young children that when they passed the playpen and Moishey’s tongue was protruding, they were to say in a playful way, “Moishey, bye-bye tsingela (tongue).” I had taught Moishey, in a fun way, how to slurp in his tongue and purse his lips when he heard the increasingly familiar call of ‘bye-bye tsingela’. Throughout the summer men, women and children soldiered on as Moishey’s ‘team’ of therapists, reminding him ‘bye-bye tsingela’. The results of those fun summer days still have their lasting effects.
My simcha friend was blown away. She said, “Tell me more; tell me more!” When I looked at her in astonishment, she explained, “Many of today’s young mothers of children who have special needs don’t trust themselves. They turn to professionals for everything in their child’s life, totally throwing all responsibility of the child’s progress and development onto the therapists and special educators. How I wish they would trust their own judgment more! Parents are the most instrumental people in their child’s life, including a child with special needs.” I had so much more to share, but I was afraid I’d bore her. However, her insistence and excitement were invitations for me to continue…
I had desperately wanted Moishey to learn to crawl; I knew it was challenging for a child with Down syndrome to master, but favorable for his development. Moishey’s physical therapist worked on strengthening his muscles and some overall coordination. But for me, the goal of crawling became a calling. The summer Moishey was 22 months old, I took advantage of the large, green field of lush grass behind our bungalow. I planted him down on the ground on his tummy, placed myself down next to him and slowly, painstakingly lifted and moved his limbs in a coordinated crawling pattern. I then crawled myself and showed Moishey what I was doing. Ever so slowly we worked together until he mastered it! Reaching milestones in a bungalow colony is such fun; there is a huge crowd of friends to celebrate with, and celebrate we did!
Delayed speech is practically a given in children with Down syndrome. In our family of ‘talkers’ I wanted to give Moishey a stab at acquiring rich and articulate expressive language. I would sit him into his hi-chair and plant myself on a kitchen chair directly facing him. I then moved my face very close to his and put my two hands on the side of our foreheads, much like horse blinders (sorry Moishey! forgive me; there is nothing about you that is ‘horse-y’), in order to block out any distractions. I very slowly articulated words that I wanted him to learn. I made sure he stared at my mouth, watched my lips and tongue movements, tried to imitate, and we actually enjoyed these sessions. Moishey eventually talked before he walked. Were those sessions instrumental in achieving early speech? We don’t know; but the levels of Siyata Dishmaya parents achieve when raising their child with special needs is unparalleled. We can sense it in every undertaking on behalf of the child and the rest of our families.
When Moishey was two and a half years old, still not walking, and like a sack of potatoes to shlep around, his physical therapist kept repeating her mantra: he has his own biological clock built in and he will walk when he will be ready. Our job is to strengthen his muscles in order to prepare him for proper walking.
We accepted the mantra…until I developed a pinched nerve from schlepping him. That’s when my husband decided to take things into his own hands a bit. He lined up 2 ‘aisles’ of chairs, with mere inches between the chairs and used a highly motivating item to bait Moishey on…(drumroll…) his plastic rain hat, ever-so-gently prodding Moishey to initially reach and stretch as far as possible for the coveted rain gear. My husband then moved back several inches, still luring Moishey with his outstretched arms offering the plastic ‘treasure’. Ever so slowly, Moishey gained confidence, grabbing at the chairs when he needed the support, but he learned to walk! We realized that his reluctance to walk stemmed from insecurity rather than inability. The placement of the chairs, his father’s kneeling down closely and encouraging him, were the incentives that prompted Moishey to let go and walk.
Our joy was unequaled! I still remember that Erev Shabbos Hagodol; with the weather being beautiful and Moishey having just mastered his first independent steps, we took him outside for a walk in the courtyard of the development where we live. Within moments Moishey was surrounded by a cheering squad comprised of the neighboring children, much to his delight. And then the shouts of the children at the intercoms as they rang their home bells – “Mommy! Moishey Sander is walking!” Faces of adults and teenagers appeared at the windows, shmattes in hand during pre-Pesach work, and the congratulatory messages rained down upon us, only followed by loads of gifts for Moishey. The Shabbos after Pesach we celebrated with a small Kiddush for our immediate family. Of all the goodies, the ‘sweetest’ was a pair of shoes made of chocolate, compliments of my darling cousin/friend.
Mothers! This is your vote of confidence; believe in your selves. Believe in your koychos; believe in the Heavenly Hand that is guiding and helping us all on our journey of special parenting.
We need professionals in our lives. We need them to help our children. But let us never forget that nobody comes close to a child’s own family and NOTHING comes close to a Yiddishe Mama!
Best wishes for a wonderful summer.
See you on January 5, ’22