Roberto and I found out Olivia had Down Syndrome the day she was born. We had done the prenatal AFP genetic screen with the Nuchal Translucency ultrasound...all "normal". I am an OB-GYN and I know the "normal" result does not mean zero risk, it just means the results show a low risk of the baby having Down Syndrome. However, I was thinking like a new mom-to-be, not like a doctor- and I completely trusted the test results. Therefore, the news came as a complete shock when Olivia was born and we had no time to prepare mentally or emotionally for that news. Needless to say, the day Olivia was born was a hard day (that's an understatement).
Everyone has a different experience when it comes to when and how they found out their child has Down Syndrome. In addition, everyone has a different reaction. I know amazing parents that didn't shed a tear and just said, "Ok, it's just another child."
I was not that strong at all. I was terrified and didn't know what to do or think. Right after she was born, in a moment of grief and utter fear, I remember asking Roberto, " Should we give her up for adoption?" I am ashamed to admit that, but it was a fleeting thought in the midst of such confusion and pain. Roberto hugged me and said, "No, this is our little girl". We hugged and cried...but we knew we would all be okay.
Two days later, we went home with our Olivia Rose. We were sent home with a book about the medical facts of Down Syndrome and a phone number for the Regional Center in our area. ( The regional center is a non-profit organization that provides services for people with special needs.) No extra instructions were given to us, aside from a follow- up appointment with the pediatrician and the geneticist. That was it.
At home, everything started to sink in a little more. And again, the panic set in. I was reading the book I was given in the hospital, and I hated it! It told me all the medical conditions and delays my child was at high risk for, from birth to old age...including a shorter life span. Really??? Is that really the information they want to share with new mothers who are already sad and terrified? I quickly threw away that book and shuffled through the other pages they sent me home with.
Luckily, I stumbled across the phone number for the regional center...I had totally forgotten about it. I called them within 1-2 weeks of Olivia's birth and that was the beginning of our educated journey to raising a child with Down Syndrome. They did a home visit when Olivia was about a month old, they told me the services that were provided and recommended for a child with Down Syndrome. I became educated about a world I didn't know existed. The world of being a parent to a child with special needs. I learned about the therapies and support groups that I never thought I'd be a part of.
At 2 months of age, Olivia started physical therapy and occupational therapy. Through the regional center, I also learned of a great organization in our area that provided group therapy for Olivia starting at 3 mos of age. There, I met amazing families who had children with Down Syndrome and I was motivated every day to be an amazing parent like them. When Olivia began therapies, I was cautiously optimistic, not convinced it would make a difference. And like always, Olivia proved to me how capable she was. She was a fighter and everyday impressed me more and more.
Speech therapy was not covered by the regional center until approx. 18 mos of age. Roberto and I felt it was important to start earlier, so we took Olivia to an amazing feeding and speech therapist starting at 3 mos of age. To her, I owe how well Olivia is now speaking!
So, yes...lots of therapies...that's my point!!! Early intervention makes all the difference in the development of children with Down Syndrome, as well as children with other special needs. It is important that as parents we educate ourselves about the organizations in our neighborhoods that provide services for children with special needs. It is important to not be in denial about what our children need. It is important to not delay early intervention because it really makes a difference. It is important to believe in our children and know they are very capable of learning and meeting milestones. Yes, milestones may come a little later, but that makes the celebration even bigger!
And no, it is not easy. As you can see, suddenly there are lots of appointments...and this doesn't include doctor visits. But it is so worth it! And for parents (especially moms), it's important to find support groups with other moms who are going through the same thing. It's important to vent and be understood, and to learn from extraordinary people!
I've heard too many stories where children with Down Syndrome start therapies so late...a lot of times from parents' lack of education about early intervention, or fear that therapies are too expensive (most of the time they are covered), or just ignorance in thinking therapies will not help their children develop "normally". And if therapies are not provided in your area, there are You tube videos that show how you can do therapies at home with your child.
To this day, Olivia's schedule is full! She just turned 6 and is in kindergarten. She has Speech and OT therapy in school. We take her to additional private PT, OT, and speech therapy weekly. She receives behavioral therapy at home three days a week. We have a reading tutor work with her twice a week, and she's in swimming lessons!
I am not telling you all this to frighten you, but to reassure you that all this is doable and both your child and you will be stronger in the long run. The love of a mother is endless and the journey with your child will be remarkable...trust me!