A Personal Story about Down’s Syndrome
It’s not often that I share personal stories with my readers, because this blog is designed to bring awareness to the world about our lives here in the wetlands of south Louisiana and to educate folks as to why restoring these wetlands is vital to our way of life and culture. Sometimes everyday life gets in the way of my blog writing, and on this occasion, I hope you will indulge me by allowing me to share with you why it’s been over a week since I’ve written a fresh, new post.
It’s because one of our children has celebrated a milestone in his life. He is the next to youngest and so different from the other four, yet in a very special way.
A Special Child with Down’s Syndrome
You see, I’m talking about our son who faces more challenges in a day than many of us face in a lifetime. We can thank an extra chromosome for that.
With that extra chromosome come trials, challenges, struggles, defeat, victory, and pride. The struggles seem more ours than his, but the pride is shared by all who’ve had the privilege of touching his life on any level.
We call him Miah, short for a big name given to him by his father in the surgical theater upon first seeing his little face after being removed from my body in the wee hours of December 14, 1992.
Not being one in favor of pre-natal fetal testing, I refused the screening for abnormalities for fear that an invasive amniocentesis wasn’t far behind. Even if the screening indicated an abnormality, we would not have terminated the life, and I most certainly would have worried the rest of pregnancy about the degree of challenge this baby would face. We also never wanted to know the sex of our children revealed by unnecessary ultrasound. This pregnancy was no different from the others--we would accept whatever was coming our way.
A prolonged labor, atypical of the three previous natural birth experiences, signaled something was awry with this delivery. An x-ray revealed that this baby’s head was hyper-extended, with the eye sockets presenting first. (Babies are typically born face down, with the crown of the head presenting first.) Because his neck was tipped back, he was not able to properly descend into the birth canal, resulting in an emergency C-section.
With The Captain close at my side, the procedure went quickly, resulting in yet another son. Once he was swaddled and placed next to my face for me to see and kiss, there was a hush in the operating room like one might imagine upon witnessing a miracle.
At the time, I didn’t know the reason for the reverence, but it now makes me wonder if the medical staff were holding their collective breath to see if we would indeed accept this blessing--a bundle of joy that might bring more challenge than rejoicing.
It was in that silence that The Captain heard the words in his mind, “Jeremiah. Jeremiah. His name is Jeremiah.” Thinking wishfully, I had only chosen a girl’s name, and how odd it seems to me now that we didn’t have a boy’s name prepared. No matter, for his Creator knew his name.
The stillness was quickly broken as they whisked him away to the Nursery, The Captain close on their heels to stay by our baby’s side.
While still on the operating table, I was oblivious to what was going on in the Nursery as our family doctor performed the necessary assessments. At one point, they made The Captain wait in the hallway, which he did reluctantly.
When Dr. Guidry finally came out, he told The Captain that the baby was fine, except that there might be a slight problem. “The baby appears to have Down’s Syndrome.” To which The Captain replied, “So? Can I hold him?”
Without a moment’s hesitation, unconditional love took over, and a father fell in love with a son whom the world might have years ago deemed a Mongoloid, requiring institutionalization.
As I lay in my hospital room waiting for the nurse to bring the baby to me for his first feeding, our other family doctor, with less of a bedside manner than Dr. Guidry, came in and told me flat out, without couching it at all, that our baby had Down’s Syndrome. The words fell flat, clinical, bouncing off my ears and landing somewhere on the cold, terrazzo floor.
My mind was numbed by the impersonal delivery of the message of a less-than-perfect baby, but my heart knew only that innate yearning of a mother for her newborn--to gaze upon his pinched face, his pink bow-tie lips, to count his fingers and toes, and feel his breath up my breast. I asked that they bring him to me right away.
Undeterred by the well-meaning nurse who said “these kinds of babies can’t suck hard enough to breastfeed,” something inside me said “don’t listen to them”. So I obeyed the voice and paid no heed to the professional naysayers who were just doing their job to prepare me for the worst.
If the worst is what you expect, then it is the worst ye shall receive. No, that’s not from the Bible but from some Infinite Wisdom imparted to me that moment on behalf of this new life, whom we later learned had a severe allergy to all things dairy. Again, his Creator knew that fact and provided. He and I persisted and showed the nurses yet one more miracle--a baby with Down’s who could breastfeed normally.
By the time Dr. Guidry stopped in again, The Captain and I had bonded deeply with Jeremiah, and nothing he could say would discourage us from loving this baby as the others. Surprisingly, his words were the most supportive we’d yet heard. He said, “There are different levels of development with these children. They are often born with a hole in the heart, but his heart sounds good and strong. The best advice I can give you is to treat him just like the other three.” It was sage advice, indeed.
A friend who was living with us at the time, Miss Cathy, brought the older three children to visit us in the hospital room later that day, where they took turns holding their new sibling. David, our oldest son, age seven, stood by my bedside, looking rather forlorn. With tears running down his cheeks, he said, “I wish it was me who had Down’s Syndrome and not my baby brother.”
My heart melted. Big Brother. Protector.
On day three, I was being discharged and was told Miah was jaundiced and would have to stay until his bilirubin count went down. There was no way I was leaving without my baby.
Refusing to be discharged and knowing that days without breastfeeding would not be good for him or me, I stayed. Determined that he have every advantage the other three had, I stayed, knowing full well that we would have to pay for the extra days in the hospital ourselves. So be it.
After the fifth day in the hospital, they let us go home, assured we had rented a portable “bili-light” to continue to treat the jaundice at home.
Home from the Hospital
Once home, LilSis, toddler in tow, came to help take care of us, as The Captain had to return to work. Also waiting for us at home were gifts for Miah. The most thoughtful was a “lambie” for the baby and a book about Down’s Syndrome for me from my friend, Sue. Since I knew very little about Down’s, I consumed the book during my convalescence. It was Sue who wrote the words to me that meant more than she would ever know, “Jeremiah is perfection in the imperfection.”
Christmas was rapidly upon us and a visit from our missionary friends, Tim and Vance, who also brought Jeremiah a gift, which we promptly hung on the wall. It was an image of a little boy with this inscription,
“I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11
Influenced by Laura Ingalls in our reading of “The Little House on the Prairie” series, Dotter, age ten at the time, had asked if this could be her baby. The fact that he had an extra chromosome made no difference to her other than the fact that she would dote on him even more than seemed humanly possible for a child her age. She changed diapers, sang to him, rocked him and was the best ten-year-old mom ever, which explains their deep bond today.
The three siblings made sure Miah never lacked for attention. Dan, age five at the time, just wanted to hold him and continually marveled at his tiny fingers. As the months went by, Baby J’s development was at the low end of the charts, which we promptly ignored and engaged instead in life according to Jeremiah.
He grew and developed at his own rate, dazzling us with every new feat he accomplished. He defied many of the odds by walking by the age of two and babbling baby words around the same time. In my mother’s heart, I knew he would one day talk. Meanwhile, Dotter taught him American sign language for thirsty, hungry, and full.
Educational Challenges of Down Syndrome
When he turned six, we tried putting him in public Kindergarten. Bear in mind that he was tiny for his age and not very verbal at that time. He was placed in an “inclusion” class, but it didn’t take him long to figure out he was being excluded. They had him at a little table in the back of the classroom playing blocks, while the other children learned their letters and sounds at their group tables.
When the teacher called me, distraught that Miah was “acting out”, I knew that was his way of communicating his frustration. She said he had put the paper from his straw into her milk carton while she wasn’t looking during lunch, and that after she fussed at him, he wouldn’t stay in line and ran down the hall to the classroom. The older siblings and I had a good laugh about the prospect of him being sharp enough to sabotage her milk while she had her head turned. It still brings a smile when I think about it.
The next day, he refused to get on the bus, signaling the end of his Kindergarten career. Since I was a home-school mom, and the older three had never been to school, what made me think that strangers could better understand and better educate my special son than I? Didn’t he also need that specialized, solid foundation that home-schooling offers?
So, I pulled him out, and together, his siblings and I gave him the best education we could. We taught him phonics, and he learned to read; the alphabet, and he learned to write. Eventually, he learned danger and safety, abstract concepts hard for any child to master. Slowly the sign language was replaced by verbal expression.
At the ripe age of 13, the same age at which the two older boys balked at having me as their mother AND teacher, he began to bristle at my instruction. It was then that I knew it was time to put him back in public school, which I did with much fear and trepidation.
Jumping Public Education Hurdles
By the end of the first week, he was crying not to go to school and again refusing to get on the bus, shouting, “Not going back!” After observing the class and being bored out of my mind with work sheets by 9:30 a.m., I knew I would have to intervene for my son, or bring him back home.
By some miracle, the proper reading program found us, I convinced the Special Ed Department to purchase it, and convinced the principal to allow the teacher’s aid to teach it. I made it very clear that he was on loan to them, and that I expected them to help him learn and to stimulate his brain as long as it was was malleable. (When you use big words appropriately, educators tend to listen and know you mean business.) In no uncertain terms was I interested in glorified baby sitting, because he could get more than that at home.
It wasn’t long before the new middle school principal, Mrs. Degruise, was visiting his classroom and reading to him every day. She’s a wheel in the cog of Jeremiah’s education, for which we are most thankful. The next year, Mrs. Theriot came along and was the teacher’s aid who was so smitten with Miah that she learned the new reading program and taught it to our son.
Of course, this is the short version, and I’ve had to continually advocate for the things he needed during his seven years in public education. Whether it was budget or manpower shortages, I refused to accept no for an answer. It wasn’t all pulling teeth though, and I must give positive credit where credit is due.
During his junior and senior high years, he had fantastic, highly-dedicated teachers and teacher’s aids who taught him “community-based instruction”, which included life lessons like how to ride the city bus, order from a menu, plan a meal, buy the groceries, and cook a meal.
As you well know, the teen years are often the most difficult for normal children, and special-needs children face the same “hormonal” challenges, on top of their exceptionality. For this reason, we will be forever grateful for Mr. Tim and Mrs. Monica, Mr. Peter, Mrs. Nicole, and Coach Mike, who believed in Miah’s potential as much as we did and have always worked with us to push him when he needed it and be patient when the tears flowed.
Educational Milestones for my Down’s Syndrome Son
Even though Miah can stay in the public high school system another two years, he informed us last year that he would be graduating this year, and he has not wavered on that stance.
It is with great pride that we announce to you that Miah graduated this month from high school, and just like a typical kid, he enjoyed all the perks of being a senior. There was the Academic Awards ceremony, the United Houma Nation awards ceremony, and of course, we can’t forget Senior Prom.
As the graduation cards and gifts came flowing in, they paled in contrast to the prom, where he was the first one on the dance floor and danced, non-stop, for three solid hours. I don’t think there was a student in that room who enjoyed prom more than our Miah, and he was so dapper in his white tuxedo! All the way home he switched back and forth between “Man, my legs hurt!” and “I had a great time!”
Post High School Options for Down’s Syndrome Students
Even though this phase of his education is over, it is not the end of learning for this young man. Not convinced that going straight to work in a sheltered environment, doing a little menial job over and over for hours each day, was the best course of action for him, it appears we are once again forging new territory.
On the way home from one of the awards ceremonies, out of the blue, he said to me, “I want a cooking class, Mom.”
In the past few weeks, it occurred to me that “normal” students are offered transitions from school to work, so why aren’t these special kids offered the same? In their senior year, some normal students have the option to go to class a couple hours in the morning and then go to work the rest of the day. Others graduate and go on to college, which is also a transition from high school to the work world. So, I started asking the professionals this question, “Why is there no transition from school to work for these kids?”
Just as Someone has always been a step ahead of us in providing for Miah, this phase of his life is no different. In one week, I was able to consult with, get advice from, and convince folks at every level necessary that there had to be a “transition” from school to work for him, even though such a program does not exist.
Now, we are happy to tell you that Miah will have the desires of his heart: a cooking class. When school starts up again in August, he will return to his Alma Mater, but this time, as a Food Services student at Vo-Tech. The teacher of the Food Service class and I have discussed having him enroll there in August, and she has expressed her genuine excitement about having him as a student. We are calling it “cooking class” for him, and he is just about as excited as he can be.
There is no doubt in our minds as a family that Miah’s Creator has been watching out for him every step of the way, just as the above scripture states. From the Hawaiian Early Learning Program that my friend Sue sent us, to the home-bound teachers who came and taught him from ages three to five, and to everyone who touched his life from then until now, please know that this was all part of the Plan for this special young man’s development, and you were each a part of that plan.
Contrary to what most well-meaning folks have expressed, it is not Jeremiah who is blessed to have family and friends like us, but rather, we who are blessed to know him and to share in his life.
He is a joy and a blessing, and I hope that one day I can report to all of you that he’s working in a local restaurant or maybe even helping to manage his own.
What is there to stop him? (see video below, please)