Monday, January 4, 2010


Have you ever seen those holiday letters some families send out? The kind that update or give an overview of their entire year. We do not send those letters.I do good to get all my Christmas cards out before Christmas Eve. However I thought in this first post of the new year, I would give a progress report on Riley, the ups and downs, reaching milestones and surpassing goals in the past 4 years.
As many of you know, we had no idea when I was pregnant that Riley would have DS. On our 1st wedding anniversary(6 days before my scheduled induction) I went into labor. After she was born and we were given the diagnosis, we were shocked, hurt, scared, etc. I remember thinking how could this happen to us. Once we finally saw her, and I held her in my arms, I knew she was our perfect child and that GOD had given her to us for a reason. And although we had no idea what our future would hold, we knew our lives would be filled with love. Looking back now, I feel ridiculous for wasting any tears, because when I think of Riley having Down Syndrome, all I feel is blessed. It does not define her or who she will be. I did not know at the time, but 1 in 3 children with DS have heart problems, many requiring surgery. 11 days after she was born, Riley was released from the hospital, with no heart, intestinal, vision, or hearing problems!
She began sleeping through the night immediately, in fact, the doctor told me at her 6 week visit that I needed to start waking her up to feed her. At 5 weeks, she rolled over. I don't think a parent has ever been so proud. I cried! It was then I knew that every milestone would be so important and we would never take them for granted. Her first year of life, Riley was pretty much a typical baby. She began uttering "da da" and after a while "ma ma" when she was around 9 months.
I was told that most children with Downs do not walk until they are at least two. So I was very happy when at 19 months, Riley took off(she hasn't stopped since)
We took baby signing classes and worked with therapist and day care teachers and by 2 she could communicate very well using sign language, (sometimes I miss those quiet times. LOL)
A little before her 3rd birthday Riley transitioned out of Early Steps(a therapy program for children birth-three) and into the school system. We went to an evaluation at the school board. Riley was given a doll to play with while I filled out paper work, then asked to put the doll away and stack blocks, name colors, match, etc. All she wanted was the doll, and she refused to perform, even simple task I was positive she could do. They cannot take the parents word, so Riley scored very low on these evaluations They offered her a spot getting on a school bus and riding across town all by herself 3 days a week. I did not feel we were ready for that so we opted to receive therapy at the wonderful daycare she attends. It is an inclusion center so children with and without special needs learn from each other. I am so passionate about how inclusion has helped Riley, I work diligently to raise money for her school and for training for other day care centers (even braving my fear of public speaking) It's amazing what love can make you do.
At her last IEP meeting after receiving one year of therapy, Riley is testing at an average delay of only 10.5 months. Meaning her developmental age is 3 years 8 1/2 months while her chronological age is 4 years 4 months. Not a very significant delay and she is growing, learning, and developing all the time. I am extremely certain she has a bright future ahead of her.
5 years ago I never could have imagined my life with Down Syndrome in it, now I can't imagine my life with out it! I feel so lucky to have Riley, she has brought such love and joy, not only to our lives but to so many family and friends. My hope is that through blogging and speaking about positive aspects of Down Syndrome changes stereotypes and fears and makes the world a better place for Riley and other beautiful children just like her. I don't know what 2010 has in store for our family, but I know that it will be a wonderful adventure based in love. HAPPY 2010 from our family to yours!


Tara said...

Love it! She's doing so well and is such a cutie, too!