Recently, I read a Facebook post that challenged parents of kids with Down Syndrome to share about the parts of their life that aren’t all “rainbows and sunshine”.
What?! You mean that your children don’t rise and called you blessed every morning with a pipping hot cup of coffee in their hand? They don’t cook their own meals, clean them up and then was and fold all of their freshly washed laundry? Thats not your reality!?
Don’t stress. It’s not mine either. My reality is waking up in the morning to a four-year-old that “accident-tally” peed in my bed because he was scared of the monsters in his closet. Or finding stiff, smelly boys socks behind the dresser that were ‘cleaned up’ six months ago. It’s also the time that my husband cleaned out the refrigerator and found ravioli that had been made an unknown amount of weeks ago. Or the time my son was caught peeing in the neighbors yard. The same child who threw food against the window to ‘feed the birds’. There was also that time ….. surely you get the idea. (If you could see my face right now, you’d realize how embarrassed I am thinking about how un-unicorny our life really is.)
When we decided to adopt our youngest son, who also happens to have Down Syndrome, we knew that life with him wouldn’t be easy or perfect. He came home at 2 years old and he was severely delayed. Zeb weighed about 18 pounds (he should have been around 28 lbs), wasn’t able to crawl, sit up unassisted, or drink from a bottle. He was essentially a newborn baby that happened to wear bigger clothes. None of this surprised us because all of this is considered ‘normal’ for a child adopted from an orphanage. Even though we had set our expectations low at this point, it was still extremely stressful. He had feeding challenges that we hadn’t had with our other children and part of the reason was because of his low muscle tone. The other part was because of how he had been fed the first two years of his life.
Low muscle tone is a common issue in people with Down Syndrome. Specifically for Zeb, this meant that he had trouble sucking from a bottle and so we had to come up with special, thick formula to help him learn how to suck without making the formula too thin as to not choke him! His low muscle tone also made it difficult for him to stand without support or hold his head up long enough to learn to crawl. However, we had an amazing physical therapist that encouraged him and pushed him just enough each session that he quickly caught up. He’s been home for a little over a year now and the difference is astounding! Zeb can walk, go up and down stairs, push himself along on a bike, eat with a spoon, and so much more! There are no limits for this kid! Someone once told us that Zeb would be able to do everything any other kids could do but he would take the scenic route.
I don’t make mean to make light of all of it because there are some parts of our life that wouldn’t exist if we didn’t have Zeb in our family. It can be overwhelming to have 4-6 therapists coming in and out of our house each week. It’s nerve-wracking seeing a small rash on your child and your mind immediately assumes the worst and believes it might be leukemia. Spending hours researching different teaching methods for potty training, walking, swallowing, etc can be confusing and time consuming. Having to schedule and be on time to so many specialist doctors appointments can get old very quickly. However, everything is do-able and TOTALLY worth having the privilege to parent such an amazing and precious little boy.
If I’m being totally honest, the most difficult parts of having a child with Down Syndrome come from outside of our house, not from the inside. We knew that having children with special needs would open us up to criticism and unwanted opinions, much like the ‘advice’ a pregnant woman gets every time she goes into a public place! However, we were not prepared for the extremely low expectations that other people would have for our children. We didn’t realize that his diagnosis was actually the ‘easy’ part.
We’ve been asked multiple times if he will ever talk, walk or be potty trained. Someone once told me that our lives were ‘over’ and we would one day regret this ‘misguided’ decision to adopt our children. I’ve had a therapist call my son a “Downsy” and she just loved them because they were always so happy. (Uhh…I can promise you that Zeb is NOT always happy. He is able to express the full range of emotions that you can and if you don’t believe me, come on over and see the 3 year throw a temper tantrum!) I’ve looked online and have seen what the world thinks about people with Down Syndrome – it made me so nauseous that I had to walk away from my computer.
Our family fully believes that Zeb (and our other son with Cerebral Palsy, Nikolas) will have an opportunity to live on their own, have a fulfilling and steady job, have a girlfriend and get married if they so choose, and so much more! All of our children, regardless what their different abilities are, have the same expectations placed on them.
- We expect them to be respectful, polite and honorable to one another, their parents, their peers and other adults.
- We want them to try their hardest at school because we desire for them to be intelligent, knowledgeable, and thoughtful teenagers. We want them to be able to discuss a topic with someone that might have a different viewpoint and be respectful of the other person.
- We desire for them to have a relationship with the Lord.
- We expect them to be quiet and eat their food in a restaurant or stop talking when a doctor walks into the exam room. Basically just being aware that they aren’t the most important person in a room!
- We hope that they will grow into an adult that desires to make a positive difference in other peoples lives. To love the unloved, support and bring healing to the broken, and care for the least of those. At this age, that means getting out of their comfort zone and serving other people by helping them with their yard work, ‘Adopt-A-Cop’, helping their sibling clean their room, writing letters to friends, volunteering at a food bank, raising money for adoptions, etc. The possibilities are endless.
We have so many other expectations of our children but this is what I can think of on only two cups of coffee! ???? We also know that Zeb might not ever be able to debate someone about world peace, and we are 100% okay with that, however, we want to make sure that we are not only challenging ALL of our children to reach high but that we are changing the low expectations that society has about Down Syndrome.
If you know someone that has a child with Down Syndrome or if you know an adult with Down Syndrome, treat them the same way you would treat anyone else their age! Say hello! Ask what their interests are. Ask them what they like to do during the summer or how they celebrated their birthday. Ask how school is going or if they play any sports! Invite their family over for a playdate or for dinner. Please, treat them the same way you would treat ANY other person or family.
We like to focus on the special abilities that Zeb has instead of the things that he isn’t able to do. There is no point in constantly comparing him to his peers and thinking about the different ways he is behind or worrying about what the extended future might look like for him. We will encourage him to do the best that he can do, day after day and trust that all the pieces will fall into place. We will fight for appropriate inclusion in every environment that he is a part of and we will challenge the previous generations ways of thinking about people who have different abilities.
Most of all, we will celebrate and enjoy this handsome, hilarious, compassionate, bossy little boy that we have the incredible privilege of parenting. We are the lucky ones.