A Mom’s Perspective on Raising an Adult with Down Syndrome

  • By Springible Contributor
  • Reading Time About 10 minutes
  • PostedOctober 18, 2017
  • Category

My story began twenty-six years ago. I was a young newlywed and had just given birth to the most beautiful baby boy in the world! I had it all, so I thought. The afternoon before we were expected to go home from the hospital, a doctor came to my door and said that my baby looked great except that his neck was “a little thick.”

What?

I had no idea what he meant but he was in a hurry and didn’t seem too concerned. He did say that our pediatrician would see us the next morning. As promised, our pediatrician stopped in (just standing inside my doorway) and very briefly explained to me that he thought my baby MIGHT have Down syndrome and that they were going to do blood work that would confirm his suspicion but it would take ten days. My head was spinning and I had a million questions but not one would tumble out of my mouth. I had heard of DS before but had no idea what it was or what it would mean for my baby. I was alone in my hospital room with no one to cry to, talk to, or just hold my hand.

Fast forward one year. My healthy baby just celebrated his first birthday with a party the size of a Royal celebration! He had made lots of fans by this time! His first year was difficult on many levels. He became very sick right after birth and gave us all a scare. We were referred to a pediatric oncologist, spent week after week in the lab, numerous doctor appointments, and so on. After six-to-nine months he started turning around and it was determined that he did not have leukemia as suspected, and that he would be fine. At his first-year doctor appointment his pediatrician looked at me and said, “There was a time when I didn’t know if he was going to make it or not.” I was shocked to hear something so severe but looking back at the whirlwind we’d just come through I must admit that I felt the same. I was so thankful to finally see a healthy skin color and to watch him grow and thrive!

I learned a lot that first year but what stuck with me the most was to not take anything for granted. I assumed that I would have a healthy baby and our life would be like everyone else’s. This would mean more and more as the years passed by. Walking and talking “on time” is not important. He learned to walk and talk on his time and that was just fine. Not being able to nurse your baby is okay. He loved his bottle and thrived! Having therapy several times a week turned from an inconvenience to days that we looked forward to since these wonderful people become like family after time. My idea of “having it all” certainly changed. My marriage ended, my son and I had to move in with my mother, and things would be very challenging for the next several years.

For the next ten years I was a single mom and I think this drove me to allow myself to have expectations for my son. Babying him would get him nowhere. I wanted him to know things, to know everything that I could possibly teach him, to learn from every encounter or situation, and I wanted him to know he could be who he wanted to be! He actually learned to walk early “for a child with DS.” He was very interested in books from the time he was old enough to hold one as an infant. He would “read” out loud, sing, and dance to Barney, act out scenes or pretend to be a certain character. In elementary school one of his favorite tricks was to pull his shirt up over his forehead and let it hang over his head and down his shoulders, swinging it to the side (like a woman swinging her long hair over one shoulder) and announcing, “I Coca-nonas” for “I’m Pocahontas”. He has always had huge people skills and could work a crowd with no effort!

In 2002 I remarried and we moved across the country. My husband adopted my son and in 2006 we had a baby girl. Three months before we moved to Texas my mother passed away. She was his biggest fan and this was a loss of monumental proportions. We had to restart our lives without our family and friends back in Georgia and start our new family. I began a new career, he began a new school. Simple changes can become huge on a good day for some kids, so to expect him to go with the flow now was asking a lot. He surprised us, though, and adapted much quicker than we expected. Don’t get me wrong, it wasn’t all peachy, but considering all he’d gone through he amazed us!

School, as with so many children, was not his favorite place because of having so many rules to abide by. Some subjects were more difficult than others; math was a bear for him but he loved science and current events. He loved the social aspect of school and quickly became known for his people skills and his non-compliance. I think they worked hand in hand! He has always been very verbal and very willing to share exactly what was on his mind! This got him into trouble daily and if I heard the word “non-compliant” once I must have heard it 1,000 times! It was brought up at every IEP meeting in the 18 years that he was in school.

It’s safe to say that the teachers and I didn’t always see eye to eye. What they quickly labeled non-compliance was most often a case of his compulsive need to do things a very specific way. This is very common among those with DS and where they get the “stubborn” stereotype from. One perfect example: he got into trouble for not lining up when the teacher blew the whistle. True, he should’ve lined up, but in his mind he could not get off the monkey bars yet because he was only halfway across. His mission was not complete and he was not getting down until he crossed all the way. He has improved greatly in this area but it still pops up and causes frustration once in a while.

I don’t recall any long periods of stagnancy, but there were certainly times that I wondered if he would every learn what we were trying to teach him at the time. Potty training was one of the most difficult times for us and I became as frustrated as he was. As with most skills, though, I knew it would “click” one day, that he would learn and we’d move to the next skill. This, in it’s own way, became an expectation for me. I expected there to be a delay but I also expected success. He has always been very driven and I KNEW he would succeed!

Some of the more difficult skills for him were in the fine motor department; cutting with a knife, using a fork, spreading with a knife, and so on. Large motor skills were a bit easier for him. He learned to ride a bike, a huge accomplishment! He has participated in almost every Special Olympics sport there is; swimming, equestrian, basketball, soccer, t-ball, track and field, weightlifting and bowling. He is currently a black belt in tae kwon do and will test for second degree in November, something that we are all ecstatic about!

In 26 years we have had many ups and downs. I learned early on that I couldn’t compare our lives with others, that I can’t feel sorry for myself, that my son is very much okay with who he is, and that I am very, very blessed! I have made many friends that I know I would never have met without my son. He has taught me so much about love, endurance, patience, gentleness, innocence, joy, and kindness. Yes, we have difficulties from time to time but I’ve learned that it’s okay and we’ll get through them. One thing that I have discovered to be somewhat cathartic is to share “Tyler Stories” on Facebook. This began by my posting proud moments; earning a new belt in martial arts, winning a sporting event, awards at school, etc. It didn’t take long before he had a fan base. Now, years later, I’m still posting but it’s become a way for me to deal with the crazy, hilarious life we live. For example, I lost Tyler in Wal-Mart (I had let him play video games while I shopped). He was not where we were supposed to meet so I wandered the aisles looking for him and finally ended up having him paged. Nothing. I had him paged again. Nothing. Security started looking for him on their cameras and they finally spotted him. A manager very kindly volunteered to go get him for me. My daughter and I waited at the front of the store and then I noticed the manager, walking toward us with a huge smile on her face. As they got closer I could tell what she was smiling about.

It seems that Tyler felt the need to some of his own shopping. He had filled a cart with chicken nuggets, tons of air fresheners, and some other odds and ends! Three years later and people are still talking about that post (and the picture that went with it). Or there was the time that we lost him at the mall! We let him browse the comic store while we shopped next door in this indoor mall (we had done this before and he always did great). We went back to get him and he was gone! After a half hour search and mall security getting involved we began to worry. The local police department was called in and they joined the search. After an hour I saw an officer walking toward me with a big smile on his face. He told me that they had found my son but wouldn’t tell me where. He just kept smiling and asking me to follow him. I followed him across the mall, up the escalator, and then back across the upper level and then I noticed a group of officers, my husband (who had been helping search), and my son standing in a group. What was so funny? They found my son in a Chinese massage store, very upset with the store owners because they refused to give him a massage with the couple of dollars that he had on him! The store owners, ironically enough, were upset, too, because my son didn’t have enough money to pay for a massage!

Lessons I’ve learned about expectations vs. reality? I’ve learned that expectations are important for both of us. He has huge potential and it’s up to me to help him see that and reach it. The reality is that I’m going to not only be proud because he met my expectations, but I’m probably going to be surprised at how he knocked it out of the park! Or at least out of the comic store…

– Laurie Lam, Springible Contributor

Looking for a similar story? Check this one out!

Managing Expectations as a Special Needs Parent

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