A year ago, October 2nd, we found out our growing baby was not only going to be a little princess, but that she was also going to have Trisomy 21. Down Syndrome. There were so many fears and questions that came with her diagnosis. Fears and questions I look back on now, and can’t help but laugh. As Down Syndrome Awareness month comes to an end I hope to answer any of the questions my readers have. And I hope that through my blog, and Adalines life you too can see that there is nothing scary about Down Syndrome.
Here are some of the most frequent question Ive been asked as well as some of the questions I had before embarking on this beautiful journey
“Are there different types of Down Syndrome?“
For starters there are 3 types of Down Syndrome.
- Trisomy 21– More than 90% of Down syndrome cases are caused by trisomy 21. An extra chromosome (chromosome 21) originates in the development of either the sperm or the egg. When the egg and the sperm unite to form the fertilized egg, three (rather than two) chromosomes 21 are present. As the cells divide the extra chromosome is repeated in every cell.
- Mosaic Trisomy 21 – This is a rare form (less than 2% of cases) of Down syndrome. While similar to simple trisomy 21, the difference is that the extra chromosome 21 is present in some, but not all cells, of the individual. This type of Down syndrome is caused by abnormal cell division after fertilization. The name comes from a random order of normal and abnormal cells (a mosaic). In cellular mosaicism, the mixture can be seen in different cells of the same type; while with tissue mosaicism, one set of cells may have normal chromosomes and another type may have trisomy 21.
- Translocation Trisomy 21-Sometimes (in 3-4% of cases) part of chromosome 21 becomes attached (translocated) to another chromosome (usually the 13th, 14th or 15th chromosome) before or at conception. The carrier (the one having the translocated chromosome) will have 45 chromosomes instead of 46 but they will have all the genetic material of a person with 46 chromosomes. This is because the extra chromosome 21 material is located on a different chromosome (the translocated one). A carrier will have the extra material but will have only one chromosome 21. The carrier will not exhibit any of the symptoms of Down syndrome because they have the correct amount of genetic material.
“How severe is Adaline/are there different levels of DS?”
I never really know how to accurately answer this question. She is only 7 months old. Anything can happen. I know that she doesn’t have congenital heart disease. Thankfully her heart “healed” its self in utero and open heart surgery wasn’t needed at delivery. But she is still a baby. She needs what all babies need. She eats, and sleeps and poops. She meets with an OT (occupational therapist) once a week and is assessed every 6 months. During her first assessment she scored average or above average on everything. Her social (both expressive and receptive) were far beyond her age level. But whether she is “severe” or not shouldn’t matter. She is amazing no matter how quickly or slowly she does something compared to your “typical” child. But…. for example, Adaline still cannot crawl or sit up fully unassisted. DS babies tend to butterfly out their legs with prevents them from being able to crawl as easily or sit unassisted. And she would rather stand than sit. We have to force to bend her legs so that she can sit, but she fights it. She would rather stand. And as much as I don’t want her crawling anytime soon, I know how important it is for her development. So were being proactive with her therapy. I know she will get it when she’s ready.
“Why doesn’t she look like she has down syndrome?”
And as much as I appreciate the compliments everyone gives her about how gorgeous she is (which I have to agree, she’s the most beautiful thing Ive ever seen) I can’t help but wonder what those same people will think about her when she’s older and those physical attributes start to show more? Will she be less beautiful because you can tell she has down syndrome? My hope and prayer for her life is that she helps change the face of beauty in this world we live in. That when we say people are beautiful, it is because we see their soul first before their outward beauty.
“What is her life expectancy?”
Life spans have increased dramatically for people with Down Syndrome. In 1910, a baby born with DS often didn’t live to age 10. Today, someone with DS can expect to live to age 60 and beyond, depending on the severity of health problems.
Will she be able to drive/live on her own/have a job?
A lot of adults with down syndrome are able to obtain a drivers license, and hold a job on their own. There is such thing as Shared Living where an adult with DS would share a home with an adult without DS. The “typical” roommate is compensated for his time and support with a salary and reduced rent. Some families pay a direct salary to their child’s roommate and others provide other compensation such as food or transportation. As for Adaline, my awesome parents have built a back house that they intend to give to her when she wants some independency and to learn how to live on her own.
Is there a “cure” for Down Syndrome?
When I read this question….I couldn’t believe it was a valid question. Just like there is no cure for brown hair or green eyes, or big feet, or being short or tall there is no cure for Down Syndrome. You are born with it. And my daughter does not have Down Syndrome because I was switching birth controls at the time when I became pregnant. Down Syndrome is a genetic mutation of chromosomes. Not something that could have been prevented, or caused because I got a tattoo before I had taken a pregnancy test.
DO’s & DON’Ts
Do say: “typical” when referring to non DS people. Do NOT say: “normal” because really, what is classified as normal now a days. Me and my husband are the farthest thing from normal.
Do NOT say: Retarded. Though it was once the proper way to describe any form of special needs, it is not proper now. It has a negative connotation and is hurtful to parents and child with special needs. Our children may be delayed in certain areas but they are just as valued and loved as any child.
Please do: be understanding and patient. Encourage your children to be friend the “un-normal” kids at school. I fear the day Adaline is left out of school activities because she’s slower than normal.
Please don’t give us your condolences: We are not sad, we are not mourning, and we are not burdened. We are in love, and excited, and thriving. Yes we have hard times, but who doesn’t. Rejoice with us. A life was given to us. She needs all the same things your children do.
Please don’t thank me: What I did was not heroic. Keeping a child with special needs does not deserve a pat on the back or an award. She is my child. I fought for her, I believed in her and I advocated for her. Something all parents do for their children. Typical or not. Healthy or not.
Please educate: Educate your children, your family members, yourself. Thankfully we live in a society that has been exposed to special needs. But there are still those ignorant people. And kids who just repeat what they hear. Teach your children to see beauty in someones soul. Not the placement of their eyes, or the shape of their nose.
Please DONT offer parenting advice: Typical or not typical every parent is different and every child is different. What works for you may not work for me. And we have no idea what the other goes through on a normal basis. Sharing things that may have worked for you is one thing. But critiquing my parenting or telling me not to do something will simply just unleash the beast…
I hope I was able to answer some of the questions you have about Down Syndrome. And if you have anymore, please let me know. I will do my best to answer them. Please remember that every child is different. Down Syndrome or not. And not all Down Syndrome babies are the same. They aren’t “Forever Babies”. Now as for Adaline, she will see an OT, a PT, an optometrist, an oncologist and many other specialist. This does not make her life less valuable. There is nothing wrong with her, we are simply being proactive.
Thank you for being apart of Adaline’s Army. Now enjoy some photos form the Buddy Walk this past weekend. Click Here to watch the video.