Your Child’s First Name
Your Child’s Age
Does Your Child Have Siblings?
Yes a brother Cayne who is 5 years old
Did You Have a Prenatal or Postnatal Down Syndrome Diagnosis?
How Was The Experience Surrounding Your Child’s Delivery?
If I knew then what I know now it would’ve been a lot different. Ryker was 3 weeks early so when my water broke at home I was very surprised! He was born 8 hours later with no complications. So when my OB saw his simian crease she immediately ran a chromosome test. I didn’t know. She was wonderful. She put my beautiful baby boy on my chest and told me congratulations. My husband heard her whisper to the nurse about a test but he didn’t bring it up to me until later. About 8 hours later we had the on-call Peds dr come into our room and with VERY LITTLE bedside manner tell us that our son has Down syndrome and that there would be a social worker stopping by our room to bring us some information. They were also going to come and take our baby to the NICU because he had high blood pressure in his lungs and he needed to be put on oxygen.
We knew about the VSD while I was pregnant and had several ultrasounds and they never mentioned Down syndrome. I am a planner. I need to know things. All of the things. I’m actually very happy that I didn’t know about Ryker’s diagnosis until he was born. But the way that this doctor, this medical professional, this person who works with children and parents EVERYDAY gave a new parent very delicate information on a very special day…Her baby’s birthday…was not how you treat a family. Not only was I a basket of new hormones but I was already getting looks from all of the nurses who came into my room so I knew that something was going on.
I asked the nurses if there was something that I had done to upset the Peds dr to have her talk to us that way and unfortunately all of them told us that was just her. I’m sure that other physicians have a much better bedside manner and can deliver sensitive news much better but it needs to be heard by parents who know what it feels like to have already heard it. The good and the bad. It needs to be better.
What Was It Like Bringing Home a Child with Down syndrome?
Bringing Ryker home was great. I was in the hospital for about 3 nights and he only stayed one night extra. He didn’t have to come home on medication or oxygen. His heart has been monitored and has been since birth. Bringing him home was just as nerve wrecking as bringing home any newborn baby! He was tiny and precious and amazing.
What Has Development Been Like For Your Child?
There have definitely been a lot of challenges. Fortunately, we have been blessed with great academic leaders so he has a great IEP in place. His early intervention taught me just as much as it did him. And it showed me that all of the books and websites that you can read and “educate” yourself on are bologna. My child can do anything he sets his mind to. And I will encourage him to do anything that he wants. He is not Down syndrome. He is Ryker.
What Are Some Good Surprises You Were Not Expecting About Raising a Child with Down Syndrome?
That the stereotypes aren’t always right….and are meant to be broken. Yes, my son is a happy boy but he can throw a fit like no other. I had not been around any people with Down syndrome or very many people with special needs so I was very uneducated and my expectations were very low. Ryker surprises me every day!
What Are Some of Your Favorite Family Activities?
Ryker loves to show off for us and dance and sing. He has a microphone that he will sing (no joke) most of the words in the movies Sing and Moana! Ryker and his brother love to go outside and ride bikes and play at the playground. Ryker is definitely my snuggle kiddo so at the end of the night that’s MY favorite thing to do.
What Challenges Have You Faced?
We have been fortunate to not have a lot of medical challenges. We know we have been very blessed. Our everyday challenges are usually the same as every parent. Not listening, attitudes, fights with brother…but we do have the communication problems when he gets frustrated. And it did take him a lot longer than most typical children to potty train. Ryker has definitely tried my patience but he has also taught me patience.
What Would You Tell Yourself When You First Received Your Child’s Diagnosis Now That You Know What This Journey Is Like?
First of all, I would have told that Peds dr to get out of my room and I’d want to see a different doctor. Maybe head of the department if possible. Not to make sure that the diagnosis was correct or not but to make sure that she knew what she did. It coming from a patient might not mean anything but a colleague or even a superior would bring some attention.
I would tell myself that everything is going to be ok. That everyone is going to love him. That yes kids can be mean and I can’t protect him forever but he will be fine. He has SOOOO many people in his corner and I have nothing to worry about. He will be the person that I will do everything in my life for. Every decision that I make will be because of that soul. He is going to teach you so many things that you didn’t even know existed! This is the beginning of something amazing. This little person picked me. I just won the lottery!
What Would You Tell a Family Whose Child Just Received a Down Syndrome Diagnosis?
Congratulations on your beautiful baby!!!!!!! You are about to have the time of your life! (Would it be weird to play Time of My Life by Bill Medley?) I have a son with Down syndrome. He’s 7 years old, he thinks he runs my house and he’s my world. There are a lot of misconceptions about Down syndrome. I can help answer any questions you have and if I don’t have an answer we will find it together. I can tell you about me and my story. Or we can just sit here. You tell me what you need and I will be here for you in any way that I can. I CAN tell you that everything is going to be okay. I know that you have a million things running through your mind right now but the one thing you don’t need to worry about is that you and your baby are going to be okay. You will have a support system that you never knew existed and you can lean on them for anything. And I’m now one of them.
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