This has been my touchstone since I learned that the child I was expecting, the son I so longed for, has Down syndrome. I don’t think I read it in any magazine, or heard it on TV, but it floated in my mind at some point after the diagnosis, and has taken up residence there. It cheers me on during the tough times, and reassures me when things are good. It has become a sort of life philosophy, the first of many gifts my son brought to our lives.
If you have just learned you are expecting a child with Down syndrome and have chosen to continue the pregnancy, it is so important that you know you are not alone! If I were to meet you, I would hug you and tell you that many other parents have been where you are, and many will follow. You are not crazy. You are simply welcoming your child into the world.
You may right now be spending lots of time on the Internet, frantically looking up what it means to have Down syndrome. You may be speaking with doctors who have suddenly become overly professional, or worse, behaving surprised that you want to keep your baby. You may have told family and friends about the diagnosis only to get opinions you’re not sure you want.
I’m glad you found this website, and I hope our story makes you feel less unusual, less like the only person who ever knowingly kept a baby with Down syndrome, and more like a parent.
The thing is, all you get from statistics and doctors and many websites is the list of all the “things” that can be wrong with your child. What a challenge it’s going to be. And of course, it’s true that raising a child with Down syndrome is somewhat different from raising a typical child.
It’s different, but then again, not so different. Because a child with Down syndrome is a child – a living, breathing, feeling, smiling, crying, laughing, pooping, sleeping, eating child. A child with blue eyes or brown, wispy hair or curls, dimples or not, a unique voice. A child who will reach out to her mother for a hug. A child who will play tug-of-war over his blankie with his dad. I know, because I have one. A beautiful five-year-old boy who loves to watch Toy Story, and knows lots of sign language, and really loves ice cream sandwiches, and crawls into our bed at four a.m. just to cuddle. A boy who has a belly laugh that can stop traffic. And when I say “I love you” to him, he says “I love you, too”.
We had our son’s diagnosis at nineteen weeks of the pregnancy, November 19th, just before Thanksgiving. It was an incredibly difficult time, made more so by the fact that three of his four grandparents thought we should consider abortion. That was pretty shocking, and for a while made us feel judged for having him. We also did not have much help in our obstetrician, who said he had never had a family continue a pregnancy with this diagnosis. We got mixed reactions when we told our immediate family members, and although we did have some wonderful supporters, still we felt very much that the people around us thought we “picked this” and so shouldn’t complain.
We didn’t complain, but boy did we ever grieve. Even though we decided to keep our baby, it was a loss nonetheless. A loss of the child we thought we were having, of the life we thought we were going to live. And we did a lot of the grieving privately because we didn’t want anyone else to tell us we had made a bad choice. After the initial reactions we got, we decided to keep our news private until toward the end of the pregnancy, because it was just so hard.
Eventually, after we had gone through much of the intense grief, we did share our son’s diagnosis. Just about 3 weeks before our due date, we called a few key friends and family members and asked them to announce our son’s impending arrival, including the fact that he has Down syndrome. We asked them to assure everyone that we were ok and ready to welcome our child with as much joy as our other children. That they could certainly call us, and visit, just to make sure that they told us “Congratulations” and “isn’t he beautiful!”. What a blessing this turned out to be! When our son was born, we were surrounded by people who knew just the right thing to say.
Our lives are certainly changed – it has been hard to listen to friends and family who told us they would have taken a different road. We move a little slower sometimes. We wait longer for each developmental milestone. But it’s also true that our lives have changed for the better. We are very different parents, I think, than we would have been without him. We are much more patient, we accept each of our children for who they are, not what we thought they would or should be. We are among the truly blessed who know that no child is perfect, yet every child is perfectly who they are. We hold each other a little closer having gone through the tough times. And our lives have been touched by a whole other set of people – teachers, doctors, therapists, and families that we never would have known. It is a very rich life.
We are not sorry that we chose to bring our son into the world, to walk the path we were given. And I know for sure that he is not sorry to be in it.
I had a picture-perfect pregnancy with my second child. Despite the fact that I was 36 I had no concerns; I was active and healthy. I had had several Level 2 ultrasounds, but no amniocentesis - I was concerned with the risks of the procedure and couldn't imagine that I would change the course of my pregnancy in any way depending on the outcome. I am, by nature, a non-interventionist when it comes to all things medical.
When Emily was born, she was slightly blue and they laid her on my chest and had me put an oxygen wand up by her nose. As I looked into her face for the first time, I thought I detected an "odd" look, but then again, many newborns aren't the most beautiful in their first few minutes. Then the midwife gently told me that they wanted to take Emily to the NICU to make sure her oxygenation was OK and that they also suspected she might have Down syndrome. I can vividly recall, almost 13 years later, what went through my mind. No fairy tale wedding, no prom, no college . . . all the things I was going to miss out on. Would I even be able to continue in my career? Would I have to become a full-time caregiver? Is she OK physically? Is she in any danger? I was devastated.
Within the hour, Emily was diagnosed with pulmonary hypertension and a heart defect, requiring her to remain in the NICU for the next two weeks. During that time, I was so concerned about her health and getting her home safely that I didn't give Down syndrome a thought. We got some brochures from the hospital's social worker and began to do some internet research. And we reached out to friends and family to see who we knew who might know a family or two we could talk to. I remembered meeting Chris Singer during a business meeting years before and it was through Chris that I was introduced to Stepping Stones. Emily started her early intervention there at 3 months and remained until she was 6 and ready for kindergarten in our local school district.
I have learned a lot in the intervening 12 1/2 years and I wouldn't trade any of it for a "normal" child. Emily is healthy, happy and a constant source of joy and amusement - everything we could want! And I have made so many wonderful friends among the community of parents with kids with DS, friendships I truly
Deborah Arcoleo ,
I never knew my son had Down syndrome until the day he was born. It’s funny because I had plenty of time to think about what could go wrong with my pregnancy but that was the one thing I never considered. You see my water broke at 24 weeks and I spent 9 weeks in the hospital on strict bed rest. I had plenty of time to think and worry. I read 25 books, I learned to knit, I watched countless movies, but most of all I spent hours upon hours sitting in bed worrying about the possibilities of what might go wrong with my son if he was born so premature. I just kept praying that if I could go another day the better the chances everything would be OK. I never suspected there could be any other issues besides those associated with premature birth. I saw multiple doctors daily, had bi-weekly sonograms and nothing was ever diagnosed. When my son Jack was born on St. Patrick’s Day I was ecstatic. I made it 34 weeks! I figured it might be a few weeks before he could go home but everything would work out.
It was shortly after Jack’s birth my OB came to see me and my husband. He told us the Doctors suspected he had Down syndrome and that this might be the reason my water broke. We were devastated and began to cry. We spent most of the next 48 hours in tears trying to deal with our own emotions as well as the emotions of both our families. How could we deal with this? How would having Jack impact everyone’s lives? Why did everyone keep saying god only gives what people can handle? What did this mean for my oldest daughter’s future? On March 19 the blood test came back and confirmed Jack had Down syndrome. That’s when something within me snapped and it became all about Jack. I realized there was no changing the diagnosis. I stopped feeling sorry for myself I became his mother. I wanted to just hold him and take care of him. There was no more crying. He was my son, I loved him dearly and no extra chromosome was going to change that. It was no longer about me but rather what HE needed. I immediately asked to meet with the Social worker and asked for whatever resources were available. That’s when the luck of the Irish kicked in. Jack was born in Livingston, New Jersey were a program for children with Down syndrome resides. The social worker immediately told us about Stepping Stones and the work it does. She arranged for us to meet with someone from the school as soon as possible.
Exactly one week after Jack was born we met with Judy, the Director of Early Intervention at Stepping Stones, not knowing much about Down syndrome other then the little information we could find online. We did not know what to expect or what we were going to do but we were desperate for information. She brought us information and books. She told us we weren’t alone and made us feel like we had people we could count on. Most of all she made sure we knew that although Jack was too small to start therapy right away we should still bring him to the school as soon as possible to meet the various therapists and learn what we could do to immediately start helping him.
Even though he was out of the hospital a few days, only 4lbs, and on a heart monitor we brought him to Stepping Stones. We met with the staff and saw what kids with Down syndrome could be with the proper therapy. At our very first meeting we met with a Speech therapist who taught me and my husband techniques that would help our son down the road with his progress. I left there feeling so great! I had a plan! But most of all I walked out knowing I had met great people who understood what I was feeling and knew what was best for Jack. We took those lessons and worked with him everyday as he grew.
I have many, many great friends and family who tried their best to help, to understand, and to sympathize, but they simply did not understand what it is like to have a child with Down syndrome. When Jack was three months old he started Stepping Stones as an EI “student’. It was there I learned we were not alone. Through Stepping Stones I was able to meet parents whose children had problems just like Jack. I got referrals to the best doctors. I met with experienced therapists who would work with my home therapists and shares ideas on how to help Jack progress most quickly. I got tips on how to handle family and friends who may say inappropriate things and how to deal with it. But most of all I found people who I could talk to about my feelings, people who knew exactly what I was going through. I have made many quick friends who will be my friends for life.
My son is now an active, playful, almost typical 4 and ½ year old. He is delayed but doing phenomenal! He attends Stepping Stones on a full time basis and is exceeding all of our wildest dreams. I am not sure where he would be without Stepping Stones but I know he is better off for having gone there. For all this I will be forever grateful to Stepping Stones and their wonderful staff!
Our daughter, Mary, was born seven weeks early, endured two surgeries in her first four weeks of life AND she had Down syndrome! She spent a total of six weeks in the NICU of Saint Barnabas Hospital, which despite the medical difficulties proved to be a positive, supportive place. But then, as all families do, we had to take her home…with us!! We thought, “What do we do now?”
Even though we did not live in Essex County at the time of our daughter’s birth, we were given the information for Stepping Stones as the “only place to go”. We knew nothing of Early Intervention or all the necessary therapies that have done so much to make our daughter strong. I know exactly what outfit she was wearing the first day we came to the school to start the summer program—the experience of being in a room with five other families was overwhelming and comfortable at the same time. Here was finally the place to find people in the same boat, people rowing ahead of us, and people along the way with lifejackets, a “ how-to manual”, and lots of snacks to keep up our energy. In the context of “Welcome to Holland”, Stepping Stones has been the most incredible Visitor’s Center that we could ever have hoped for.
Mary has always amazed us with her ability, not her disability. She rolled over, she sat up, she crawled (in a funny way!), and she walked. Now she runs, jumps, does flips on a trapeze, and plays soccer. Mary writes her name, our names, her brothers’ names, and she writes sentences. She took piano lessons.
She eats different foods somewhat cleanly (she’s never met a chocolate ice cream cone that hasn’t been worn), and she tells us stories. Without the Physical, Occupational, and Speech Therapists at Stepping Stones, she would have done these things, but she may not have done them as well and we may not have known how to help her.
Mary transitioned easily to the Stepping Stones School program and stayed for the entire pre-school program. Her (award winning) teachers and the volunteers in that class took Mary and our whole family into their care. The individualized academic program and the focus on socialization, as well as the continued therapies have prepared Mary for a successful transition to our neighborhood elementary school.
We feel strongly that attending EI at Stepping Stones and transitioning to the school were the best choices for Mary. One piece of advice that we would feel comfortable sharing is that the bottom line is, "Do what is best for your child". Being in a boat with the experts, teachers, resources, and families most familiar with our situation turned out to be the best start for our journey and could be for yours too.