10 things I’ve Learned about Down Syndrome
Before my son was born I have shared that I had a very stereotypical view of what Down Syndrome was. I simply knew that there were specific facial characteristics associated with the genetic anomaly, that it was a genetic numerical difference, and that it was also known as Trisomy 21.
My only real-life experience was when I was in high school and I saw the little yellow bus drop a few kids off in the classroom at the end of the hall. There was no inclusion then. I then would occasionally see these same kids in the hallway between classes, I remember one boy named Peter who smiled a lot and another boy who yelled.
That was my reference point. Sad, I know.
I had no idea what this life was going like when our pediatrician told us that our 2-day old son had Down Syndrome, I only thought the worst, and I cried.
There are a few things I have learned on this journey though…
- There are 3 types of Down Syndrome
There is the standard Trisomy 21 where all of the 21st set of chromosomes in a person’s body are in triplicate. There is Mosiac Down Syndrome where only some of the 21st sets have triples and others are doubles. There is Translocation which is the only form of the condition that is hereditary, meaning your genetic chance of having another child with Down Syndrome is higher than in the general population.
- Children with Down Syndrome have a higher propensity of certain health problems
Our kids are typically screened for the following: Vision, hearing, heart defects, and thyroid and can be at higher risk for childhood Leukemia but are also better at beating it and making a recovery.
- Hypotonia means low muscle tone
This is a hallmark of children born with Down Syndrome, but it also means that they are THE BEST snugglers on the face of this earth.
- My child may have a harder time recovering from respiratory infections
We experienced our first bout of RSV at 1 month old, and let me say, that was scary. It was explained to me that the bronchial structure of a child who has Down Syndrome is less complex than that of a typical child which can cause more difficulties in getting over certain respiratory infections.
- My child would make me smile daily
I am not being overly generous on this statement either, he literally smiles at me all the time. In turn I laugh and smile back and, of course, cover him in kisses.
- I was IGNORANT
What I thought life would be like was so far from how it actually is. I am an educated woman, a BA in psychology and 15 years of being a social worker but I was IGNORANT. I have not been sad since those first few weeks, I can now talk about Down Syndrome without crying. I just did not understand what is possible and how dated my own reference point was.
- I have to be gracious
As much as #6 is true, my own ignorance, I have to be gracious because I need to teach others who are still ignorant. When the, “I’m so sorry” is stated or the offensive question is asked, I have to be gracious and choose to educate rather than get my feathers ruffled. Being snarky, though it may feel good to release the comment at the time, is not going to help educate others and remove ignorance.
- Life goes on
My life is not that different than it was before my son with Down Syndrome was born. We have assimilated physical therapy appointments into our weekly routine and we have had more doctor appointments than my other children did, but other than that…life goes on. We still do the same things we did before. We go camping, we participate in 4H, we go to the grocery store, we eat out, we still just enjoy life.
- My other children would be impacted, but not negatively
I have to admit worry when we learned of the diagnosis. What about my other 5 children? How would I keep them from living a hard life because their sibling has a disability? What I have learned is that his diagnosis has brought out even more compassion in my children. My oldest now wants to be a pediatric nurse and I know that decision was greatly impacted by some of the great nurses we had during our 8 day ICU stay for RSV.
- I LOVE my new community
I had no idea that there was an entire community of parents, grandparents and family members who have amazing stories and encouraging words available at any given moment. We are prayers, encouragers, advice givers, and comrades in one big purpose, showing the world that our loved ones matter. This is the most amazing community of people I have ever had the privilege of being a part of.
There are so many more things that I have learned, I could literally fill up 10 pages worth, but ultimately, these seem to be the most important.
When I was in school, all of the ‘special needs’ kids and the ESL students were in the basement classrooms, hidden away. Today, there are so many speaking up for the children (both different needs and ESL 🙂 ), but it its still difficult. My biggest concern is as Dianna gets older someone will say something directly to her that is hurtful.
We do need grace, but it can be hard. Not with those who are ignorant as you and I once were, but with those who are intentionally hurtful. But those are ignorant and in need of grace possibly more than any.
It’s been a great blessing to get to know you and so many through you. A tribe we can lean on, get advice from, share stories with. A real friendship. Thank you, Dawn!
I think probably one of the most important things I learned was based in the most important (to me) question I asked the geneticist that first day, as tears streamed down my face, “Will she be ever be able to form and express her opinion?” That was so key to me, that I would truly have the opportunity to KNOW Kelsey. Although his answer was less than comforting (With a shrug of his shoulders, he said, “She might, she might not.”) I realized over time that there are so many ways to communicate besides through words…. Although Kelsey’s speech developed well enough for us to understand her well, due to stuttering and hearing issues people need to take more time with her, which I’ve found is challenging for the majority of the population. Going slowly feels awkward in our society, and having someone repeat themselves several times feels rude, so we often times will abandon the conversation with a polite, “Oh, that’s nice!” I am not in any way criticizing people because I’ve been there and understand! As a young mother I would take up conversations with older people with Down syndrome at social functions and feel badly that I was unable to decipher the cadence, tone or structure of some words or sentences while completely grasping others. (Today I’m much better at it, since I’ve had lots of practice!)
My point, though, is that people with Down syndrome and other levels of ability have so much to say, whether verbal or non-verbal! “More alike than different” couldn’t be a more true statement. I have been blessed beyond measure to hear Kelsey’s thoughts about e-v-e-r-y-t-h-i-n-g!! She thinks deeply, has concerns, comes up with great ideas for toys, movies, stories, ways to solve issues (especially making peace between people)… She never lets me get away with speaking negatively about myself or anyone else, always encourages me to be my best and tries to convince me that I’m gorgeous, even without makeup, ha-ha, and makes me laugh all. the. time. She has a great sense of humor and loves to laugh and play practical jokes. Also, she’s never been shy about saying no (to her family…. we are still working on that with others, which is an area of concern as she’s become older.)
I understand that there are people with Down syndrome who cannot (or perhaps don’t care to) express their opinion but I didn’t realize how much thinking about life, love, and the pursuit of happiness (including others’ happiness) goes on with our precious loved ones! I’m honored to be counted among “the lucky few” and to be part of such a wonderful community as well.
How wonderfully said!
I do think that so many in our culture just want convenience. Even conversations. Conversation is a lost art. Our family is ‘awkward’ in this because we do love to sit and talk and talking takes a looooonnnnnngggg time.
We actually had a conversation at breakfast this morning about the perception of Down syndrome and other ‘disabilities’, that perhaps our loved ones in a different time (prior to the 20th century) were perceived differently. Maybe the perception we are fighting is a newer one related to our culture of convenience. I thought about this because of a painting done by a Flemish artist. Some scholars who studied this Adoration of the Christ Child have even said this:
“After all the speculations, we are left with a haunting late-medieval image of a person with apparent Down syndrome with all the accouterments of divinity. It is impossible to know whether any disability had been recognized or whether it simply was not relevant in that time and place.”
Just interesting to me. My mind is always buzzing about Dianna, what goes through her mind, what goes through others’ minds regarding her . . .
I love this and can relate so much to it! Thank you so much for taking the time to write these articles! It helps tremendously to know other moms are in the same boat!
Boy we learn quickly though, don’t we? And I find that now I wonder how I didn’t know all this stuff years ago!