Whether you find out during a blood test, an ultrasound, or at birth, a Down Syndrome diagnosis likely will… or has rocked your world. To say it is shocking, scary, numbing and lonely are all understatements compared to the hurricane of emotions that you may be feeling. To top it all off, there is the need to share the news that your baby has a diagnosis of Down Syndrome, yet the intense desire not to. Here are a few things that helped me, and will likely help you also when you need to share the news about your new babe or babe-to-be.
Should You Tell Your Child They Have Down Syndrome?
Should You Tell Your Child They Have Down Syndrome?
This was a question that I heard two moms talking about and frankly, it puzzled me a bit. I overheard them talking, both newer moms, and one said to the other she was never going to tell her child he had Down Syndrome. I seriously scratched my head at this one… It has never once crossed my mind to NOT tell my child he has Down Syndrome. So that leaves me wondering, should you tell your child they have Down Syndrome?
In the beginning, when we were still processing our son’s diagnosis we didn’t tell the world. Our reasons at that time were to allow ourselves time to process and navigate the emotions that come with a birth diagnosis. It wasn’t long before we found our bearings and felt that we should go ahead and share the news with friends and family. In fact, when Cedar was 2 weeks old I wrote a post that was what we shared with the world so we didn’t have to tell people one by one. I have to tell you, I felt so much better and the fear started leaving me at that point.
Related Post: The First Post We Shared With The World
From then forward Down Syndrome is a non-issue. We share Cedar with the world and yes, big surprise, he has Down Syndrome. Because we are so involved in the Down Syndrome community at this point his diagnosis is just part of daily conversation so I doubt he will ever even ask, but if he does, it won’t be hidden from him.
I think I felt so perplexed by the conversation I overheard because I can’t imagine trying to keep something like that from your child. I mean, if your child has asthma would you NOT tell him or her? Okay, I get that asthma is not an intellectual disability but what about if your child had dyslexia? My husband has dyslexia and has always struggled with some things because of it. What if his mother had never told him that he had dyslexia? I don’t think that he was in any way scarred by knowing that he has what is considered a “learning disability.” It hasn’t held him back in any way. He may have to work harder but it hasn’t stopped him from attaining a college degree and a career that allows him to support a family of 8.
So, should you tell your child that they have Down Syndrome? In my opinion, yes, you should. There are things that are going to be harder for my son to learn and do and I don’t want him to be ashamed of any part of him. He has an extra copy of his 21st chromosome, that is how he was designed by God and therefore it is an integral part of who he is. I will not allow him to use it as an excuse for anything, nor to claim his disability as a reason he is not willing to try something, but, he will know everything about himself, and his extra chromosome.
What are your thoughts on this? Have you ever heard of a parent not telling their child they have Down Syndrome?
In Case You’re Down- A Down Syndrome Diagnosis
In Case You’re Down- A Down Syndrome Diagnosis
There are many moms who will learn about a Down Syndrome diagnosis at birth, that is how our family learned about it too. Some of us will go on to advocate fiercely in hopes of easing the transition for those moms who come after us, when they feel shell-shocked, when they are scared. In Case You’re Down A Down Syndrome Diagnosis. Andrea is just one of those amazing mamas hoping to help others, encourage moms and show the world that Down Syndrome is not as scary as we fear. She has created the most beautiful and touching video in the hopes that new families will see it and find immense encouragement. Her son Case, the impetus for her trailblazing is the light of her world. Here’s Andrea’s story and her brilliant video, please share it so that we can circulate the positive side of Down Syndrome.
Why We Didn’t Test for Down Syndrome
Why We Didn’t Test for Down Syndrome
We were shocked when our son, Cedar, was born with Down Syndrome. It was an overwhelming and all-consuming shock if I am totally honest. One that makes me look back on those first few pictures we have and still get choked up sometimes. My eyes were glassy and red-rimmed in those pictures when I should have been smiling and joyful. I still stick by why we didn’t test for Down Syndrome.
I wouldn’t change the way we learned of the diagnosis of Down Syndrome.
I vaguely remember in my early twenties being offered lots of tests when I became pregnant the first time and asking what they were for. I was told that I would be able to have screens for all kinds of genetic issues but being young and healthy I didn’t see a reason for the tests and they did let me know that there were false positive rates.
That right there was what always led me to decline the tests, because I know me.
I cannot handle the worry involved in fearing there is something wrong in a pregnancy. My husband and I have actually conceived 10 children but lost 4 pregnancies. Just the worry going into a pregnancy when HCG levels are not what they are supposed to be or there is spotting or cramping or any other part of a pregnancy that is “not normal” terrifies me. That and I just really want to enjoy being pregnant without the worry that comes with having a test performed and the anxiety of waiting for results.
The ironic thing is that I had the same OB/GYN for all of my pregnancies and she would dutifully offer the testing but follow up her words with…”I know you aren’t going to want it, but there are prenatal tests we offer.” She may have offered more than once with my last 3 pregnancies as I was over the magic “35” mark at that point, but nonetheless she never pushed.
My last few pregnancies were so wonderful as I had committed to being a full time mommy and left my 15 year career as a social worker. I no longer had the added stressors of work life and family life combined and I could fully focus on being mom. My pregnancy with Cedar was no different other than I was much more tired throughout the pregnancy, I attributed that to just being older going into this pregnancy. We made the switch to homebirths and using a midwife and doula after our 4th child was born so even though I continued to see my OB/GYN through our 20 week ultrasound, I planned a more natural approach to our birth.
I did have ultrasounds, I did have prenatal care, and yes, I took my vitamins. I did decline the blood tests that would have likely picked up on Cedar’s little extra chromosomal surprise and I am so glad that I did.
Had I had those tests I know I would have been a mess for the entire pregnancy.
I had a taste of that when our 20 week ultrasound made a tech think Cedar had clubbed hands and feet (he does not). We were referred to a Level 2 ultrasound/anatomy scan where we were told that all looked good and there was no cause for concern, there were not clubbed hands and feet or any other anomalies visibly present. However, that 7 day wait between one ultrasound and the next and the emotional rollercoaster I was on worrying about everything that could go wrong was more than I ever care to experience again. When the high risk OB offered blood tests and/or an amnio due to my age I declined rather vehemently and never looked back.
I am so thankful that God allowed Cedar’s surprise to be hidden until he was safely here in my arms because I know me, and God knows me, it would have been bad.
I declined the testing not so much just because it wouldn’t have changed anything (and it wouldn’t have changed the outcome- we never would have chosen to do anything but give birth to Cedar) but because for me, I didn’t want the added stressors of waiting for results, worrying about false positives/negatives, and so many more fears that it seems when you crack the door open, they flood in the room. Like I said, I know me and I didn’t want to do that to myself.
I know many people say they want to have testing done so that they can prepare but I don’t know if you can ever truly prepare to become a special needs parent. It isn’t a path that any of us anticipate and initially navigating this new path can be kind of hard, however, I was glad that Cedar was my instructor from day 1 and not his diagnosis before I laid eyes on him.
I fully educated myself on Down Syndrome once Cedar was here in my arms and once I no longer had to fret about everything that could go wrong prenatally, he was here, he needed his mama and I was going to do this as best as I could.
We all chose to test or not to test based on our own reasons, I am so glad for the choice I made not to test.
A Post Natal Diagnosis of Down Syndrome for Just One Twin
We knew we were having twins from the first 8-week scan. It was a surprise pregnancy so you can imagine the added element of excitement finding out there were 2.
My pregnancy was fairly smooth. We did every test; each came back negative for all genetic defects. Thinking back now, I remember when we had gotten the DS specific test back negative and told our families, it was a unison, “thank God” from all of us.
I really hate that memory.