THE 2 MOST COMMON QUESTIONS I GET ASKED ABOUT DOWN SYNDROME + SOME THINGS YOU DIDN'T KNOW
by Alex Parsley
WHY DOWN SYNDROME?
I have lots of people ask me this question. It usually sounds like this, “Please don’t be offended, but WHY DOWN SYNDROME? What made you adopt a child with Downs? Was special needs always your intent?”
Now, I could choose to be offended. But, why? What good does that do? Plus, everyone that has had the guts to ask me really has had the best intentions in asking. Rather than be offended, I actually like it. I like people that have the guts to ask hard questions. And I like that it gives me the opportunity to share the why and maybe help people see things a little differently.
My answer is this… We didn’t choose Down Syndrome. It chose us. Or rather God chose it for us. Just like we didn’t choose adoption. God chose adoption for us. We simply chose to say ‘Yes’ to whatever God was asking. And He did the rest. He aligned our hearts to His will and put the rest in place. He showed us, without a shadow of a doubt, which child He had for us. Nope, I never had the intention of adopting a child with Special Needs. But, honestly, I never had any intentions at all. Or expectations for that matter. I kind of think that was the point. God was just asking us to trust Him in the unknown.
The next question is quite often, “IS IT HARD?”
YES. It’s hard. But life is hard. Kids are hard. Parenting is hard. But Down Syndrome isn’t really that hard. Just different. Different like each of my kids are different. Ethan learns a little differently than each of them. But each of them also learns differently from the other. He has some medical differences. But, so do each of my ‘typical’ kiddos. He also has so many different things that each of us could stand to have more of. Ethan is crazy tough and strong. He does not hold onto anger or hold grudges. He forgives easily. I know I could use a little of that. He sees people so well and has so much compassion, empathy, and love for them. He is almost always happy, but when he isn’t happy with his circumstances, it doesn’t last long and he doesn't let it rob him of his joy. There is a whole lot we could all learn from him.
I am a free spirit, so trusting in moving forward with adopting a child with Down Syndrome was a little easier for me. However, I do think it helps some people (like my hubby) to know as much as possible about what they are saying yes to. So, in light of upcoming World Down Syndrome Day, I want to answer a few questions (and maybe bust a few myths) about what is and what isn’t hard about Down Syndrome. From a Mom’s point of view. (Sidenote: These are all from MY point of view. I realize that this is not every mom’s/families’ experience. And every person with Down Syndrome is not the same. I am also no expert. I am simply another Mom of 4 that has experiences of her own to share.)
I would love to know what your answers are too. Feel free to follow me on socials or email me and share your stories with me.
WHAT HAS BEEN HARD THAT YOU HAVE ALREADY CONQUERED? Some things come in seasons or waves and it’s hard but you get through them. That’s these things for me. While I was in the thick of it, I wasn’t sure we were ever going to get through it. But now that we conquered and are on the other side of it (with, at most, a few minor setbacks from time to time) I see that it was just a season and if we got through this one, we will likely get through the next.
Potty training: WARNING: MAY INCLUDE FOUL LANGUAGE & TMI.
Potty training was, for me, THE hardest hurdle we have had. Hands down. When I think back to it, I still feel traumatized. Let’s be clear, I never really loved this stage anyway. But, this was a whole new level. Ethan had not really even begun potty training when we adopted him (at 3). The first 6 months were the hardest. Partially because we had to be retrained as parents. Scheduling his bathroom breaks was of the utmost importance and we just had not done the whole potty training thing in a while. The hardest thing about it was that Ethan did not quite understand the whole “Poop is gross, we don’t touch it, and we definitely don’t touch other things with it” thing. To be honest I probably just scared that out of my other kids. But that wasn’t something I could or should do with E and fear is also something he didn’t really have. Ethan didn’t want to play in it or anything. He just wanted to be independent enough to wipe himself. And when he did, it would get on him and then he would wipe it on the wall, or whatever was nearest, and it just spread. So it took a lot of work and A LOT OF TEARS (on my part) to teach the boundary of not touching it or allowing me to help him before he did. You know the opening scene in “Mom’s Night Out” where all she can see is Salmonella spreading everywhere? (If not and you need a good laugh, you should watch it). Well that was me, except it was shit and there was Ecoli spreading everywhere. I was sure we would never get through it and we would probably all die from it too. In all fairness though, we made it. We conquered Potty Training just like everybody else. It just took a little longer. And every, every once in a while E still has an accident. Mostly because he is having too much fun to stop what he is doing. But overall he did it. We did it. We made it through. And every teacher, special education specialist, and doctor, has been astounded at how quickly we got through it and how early he was potty trained. Which was cool for me because it encouraged be to really celebrate the little wins more because sometimes what seems little is actually a pretty big deal.
Sidenote: We are still in pull ups at night. And likely will be for a while longer. He almost never wets the pullup. Maybe once a month. But when he does, it is a river in his bed. And we are 2 new mattresses in. And, to me, it just isn’t worth the lack of sleep or expense. We will get there.
This is a common term in Down Syndrome circles. It’s basically running away. For some it is a cat and mouse, catch me if you can, game. For some it is just wandering minds beginning to wander around which leads to running away. We had a couple really big scares with this. Ethan once ended up 2 blocks down before we figured it out. He was going to visit his best friend. Which is only one block away from a main intersection. Imagine our panic. And the moment he saw us coming, he only ran faster. He also ended up in a neighbors’ car with the door locked. In the mid of summer. Thankfully we were watching quite closely and knew he liked cars and noticed him laughing at us from inside. He was in there less than a minute. It’s always fun going to someone’s house, whom you don’t know, and telling them your child locked himself in their car. For Ethan, it was definitely a cat and mouse game. Thankfully, we got through this too. We taught very clear boundaries consistently and he figured it out pretty quickly. For some though this is a very long battle. But, there are resources to help and I am learning that alot of people don't know about them. So for those of you that don't... Most city/county law enforcement agencies have a free program, like our local Project Lifesaver program, that provides wristband transmitters at no cost to people with Alzheimer's, dementia, autism or other cognitive disorders who have a history of wandering and becoming lost. The program is designed to track participants who are traveling on foot. It also has proved to be an asset when other scenarios arise. For instance, Ethan would go home with anyone. He still would to this day. He just loves and trusts people. So this can be a great resource if you have an eloper. Also, some food for thought… Don’t judge other parents that have one of those cute little leash backpacks on their sweet little kid. You have no idea what they are dealing with.
Bedtime was really hard for us for a while. On two fronts. Ethan needed and wanted a lot of physical touch, which likely had more to do with being an orphan than it did having DS. He liked to rub your arm or your face or whatever was skin on skin to fall asleep. Sometimes it took a while and sometimes it took a lot of patience. For the most part it was sweet, but I am not very touchy-feely by nature so prolonged amounts of it were hard for me at times. But I knew how important it was for him to bond and feel safe and secure in his new family. Now, he doesn’t need skin on skin to fall asleep any longer but sometimes he still wants it and it is sweet when he does. On the other front, Ethan did not sleep well and moved all night and got up several times per night and there were a couple meltdowns (again on my part) caused by sheer exhaustion. About 2 years in, after several sleep studies, we learned that his brain was shocking his body every 9 minutes to wake him up because his airways were closing and he wasn’t getting enough oxygen. Come to find out, all kids with DS should have a sleeping study. I had no clue. No one told me that. We had his tonsils and adenoids removed and it improved. We have tried multiple CPAP machines and he just won’t wear them and it has also gotten a little better as he has grown. So while this is not completely conquered forever, we are all in a good place and we survived the worst season of it.
Being On Point:
One of the other hardest things for my Hubby and I was just learning to be on point parents again. Our other children had all made it past the ‘fix your own bowl of cereal, use the microwave safely, shower yourself, and play in the street with neighborhood kids’ stages. (It’s okay, we live in a quiet culdesac.) We had gotten past those times where you have to watch every move they make. For safety reasons. That just took some getting used to. And he gave himself a super special haircut a couple times. But, we got through it and it really didn’t have much of anything to do with him having Down Syndrome. Although, Ethan may be a bit more curious and mischievous than the average child.
Hopefully, this either answered a few of your questions, made you feel not alone in your circumstances, or encouraged you that this too shall pass. Whatever it is. I'll give you one last tip... Laugh more than you cry! It helps a lot. And in the grand scheme of things these small little hurdles are really not that deep.
Make sure to pop back in next Friday for the next round of questions and answers and don't forget to follow me on Instagram and Facebook to add your comments and stories.