AM Transport Celebrates Alex McClain and World Down Syndrome Day!
9 minute read
World Down Syndrome Day 2021
Each year, World Down Syndrome Day is celebrated on March 21 (this past Sunday). This day was chosen to symbolize the third copy of chromosome 21 in Trisomy 21, the most common form of Down Syndrome. World Down Syndrome Day was first celebrated in many countries in 2006. In 2011, the United Nations General Assembly declared March 21 to be World Down Syndrome Day to create a global voice for advocating for the rights, inclusion and well-being of people with Down Syndrome.
Here at AM Transport, World Down Syndrome Day has special significance for us. Many of you know and talk to our own Rob McClain on a daily basis, so you probably know that his youngest child, Alex, was born with Down Syndrome. Rob and his wife, Lauren, are active advocates for education and awareness. Plus, their guy Alex (pictured above) is about as cute and sweet as kids get. In honor of World Down Syndrome Day, I asked Lauren a few questions about Down Syndrome, life with Alex, and what she’s learned and hopes we all can learn.
First of all, can you tell me a little bit about Down Syndrome?
Down Syndrome, or Trisomy 21, means there is a 3rd copy of the 21st chromosome. In Alex’s case, this copy is present in all of his cells. There are different types of Trisomy 21, however, and not all of them have the 3rd copy present in all of the cells. For example, Mosaic Down Syndrome is not as common, but the 3rd copy is not present in all of the cells. People with Mosaic Down Syndrome often have less obvious physical features and less profound cognitive issues.
Down Syndrome is often identified in a person by his or her small stature, slanted eyes, a complete line across the palm of his or her hand (and even across the bottom of the foot), low setting, and small ears. People with Down Syndrome also often experience lower cognitive functioning and have some developmental delays. They are, however, able to live meaningful lives and should always be encouraged to do their best and try hard.
During the first few months following Alex’s birth, what were your greatest challenges and what most surprised you?
Honestly, Alex was a wonderful baby. He was our third child, so maybe we were just more laid back–haha! We were so fortunate that he didn’t really have any health issues, so we were able to focus on development from the very beginning. The biggest challenge he had was learning to nurse successfully, so I didn’t have to express milk and bottle it for him. But after a couple of months, he was even a champ at nursing. He was a good sleeper from the beginning (still is) and was a very chill guy.
I was probably most surprised because he initially hit some of his developmental milestones early. I really expected him to experience some developmental delays much earlier. However, he rolled over at a younger age than either of our older children and was very quick to flash a smile.
Can you talk a little about Alex and his personality? What are some of his favorite things?
Alex is very easy to please. He has just recently begun making his feelings known by saying “No” very sternly to us and sometimes pouting. These incidents are pretty minor compared to the behavior of a typical 3 year-old.
He loves Cocomelon on YouTube. He also loves to be outside with his siblings. He always wants to ride in big brother Grant’s firetruck (powerwheels), and he loves to ride his new AmTryke which is a modified bicycle easier for him to ride. We were gifted this AmTryke from our local chapter, and it was such an honor to be chosen because we are a bike riding family.
He loves to eat anything, will try anything, but probably loves macaroni and cheese the most. Alex is the BEST hugger I have ever met. He will pat your shoulder while he hugs you, and he pulls you in close–like the hug actually has meaning. He can read people’s feelings better than most adults I know and has his own way of offering comfort just by being himself. His intuitiveness is quite remarkable.
Alex is in school now. Can you explain why he had to begin pre-k in the middle of the school year after his third birthday?
This is a very interesting question, and I appreciate you asking because it’s an important topic. Alex participated in a program called Early Intervention through the State of Illinois where he was provided with very good and intensive therapy seven hours a week; however, in this program a child ages out on his/her third birthday. The only way you can continue therapy is to enroll the child in school on that third birthday.
We elected to wait until January (Alex turned three on November 9th) because nothing seemed normal about starting school on November 9th. This means he went without necessary therapy for a couple of months. But with the holidays, Covid, and the intense therapy he had for three years, I thought a little break would be okay. During that time we did participate in Occupational Therapy through our local hospital. His OT, Katie, is maybe the loveliest person alive! We love her and all of the good she has done for Alex.
We participated in an IEP (Individualized Education Plan) meeting for Alex around the time of his birthday to determine what schooling would look like and how much therapy he would receive. I was completely shocked when they informed us that Alex’s assessments indicated he was not developmentally delayed. This probably sounds like a great thing, but really it means that he didn’t qualify for the “Special Education” preschool classroom or any therapy (aside from one hour of speech weekly). This news devastated me. I knew the amazing therapy Alex had been receiving was the reason he was developmentally where he needed to be.
We began exploring other options. Luckily, the principal at our Catholic school where Alex’s siblings attend was a huge support. (As an aside, Mrs. Potter is a co-owner of AM Transport Services.) She really took us under her wing and made sure Alex was welcomed into a school setting where he would be loved, accepted, and challenged. She has worked hard to put therapies in place to help Alex develop even more. He is fully included in a preschool room five full days a week. This is quite an accomplishment for any three year-old, let alone a young man with Down Syndrome.
This wouldn’t be possible without the best natural supports St. Joseph School has put into place. His classmates ask questions about him in a loving way, they show him how to do things, they teach him to say big words like “umbrella,” but most of all they are Alex’s friends. They do not care that he is different than they are. They love his differences, and in turn, they have the best friend they could ask for in Alex.
Our goal is for this inclusion to work for the remainder of Alex’s elementary education, but we are also real, and know at some point he might need a more supportive environment. We will take this one year at a time, and will trust the educators at St. Joe, and especially the awesome principal.
I’m also happy to report that Governor Pritzker has proposed a bill which will allow children with developmental disabilities to remain in Early Intervention until the next school year following their third birthday. I am anxiously watching the movement of this legislation in the hopes that kids younger than Alex will be able to experience a “normal” start to preschool.
You were probably uniquely prepared to have a special needs child. Could you explain this?
Yes! I have always wanted to work with people with special needs. I was probably the only little girl who always said she wanted to be a special education teacher. However, in college I changed my major. But my first career found me assisting people with disabilities in finding and maintaining community employment. I attended several IEP meetings in that position and assisted people with disabilities when they transitioned from school to the next steps in their lives. I also had the opportunity to do some case coordination for kiddos in a home-based program when the state underwent some major funding cuts.
I believe this work prepared me for life with Alex. I have also served on the local 708 Board which provides funding opportunities to agencies which serve people with developmental disabilities and mental health concerns. Additionally, I serve on the Family Matters Board, an organization that provides family support to families of young people with disabilities. This organization spans almost the entire state of Illinois.
You have two other kids. I’d love to hear about them and their relationships with Alex.
Nora is 10 and loves anything with a ball. She will shoot baskets outside or throw a ball at a screen to field it for HOURS! She also loves animals and hopes to become a veterinarian. She is a super hard worker, very smart, and extremely compassionate. She was born with this compassion, but I have watched it transform since Alex joined our family. Nora is oftentimes the only person Alex wants when he is hurt or upset. He reaches for her to soothe him, to have fun with, and for bath time. She gets him ready for school most mornings, makes his breakfast, and ALWAYS walks him to his classroom. She lifts him onto the bus after school and she is a tireless advocate. She might know Alex as well as Rob and I do. She would do anything for her little brother and is very smart when it comes to his diagnosis. She also doesn’t let that diagnosis define him. Her expectations for Alex are what they would be for anyone else!
Grant just turned 7, and he is ALL boy! For this reason, Alex loves to hang out with him. Grant never avoids a muddy puddle, he likes things that go, and he wants to talk about cars and tractors. He wears his heart on his sleeve and doesn’t like to see anyone hurting. He will protect his little brother to no end, and I would hate to see what would happen to a person if they tried to hurt Alex. 🙂 Grant loves math. He is also very intrigued by Alex’s diagnosis and asks very thought-provoking questions. Often he asks me if a person with Down Syndrome can do ________? We always talk about how having the right supports in place will enable Alex to do anything! Grant is the perfect mix of ornery and sweet for Alex! He always tells me he is going to be a farmer and will have a place for Nora to have her horses and for Alex to live. His love for his siblings is undeniable!
Is there anything else about Down Syndrome you think the general public should know? Are there any organizations people can check out for further information?
Down Syndrome is just a diagnosis. It does not define a person. Also, there is a misconception that all people with Down Syndrome are ALWAYS happy. While most of the time, people with Down Syndrome tend to have laid back and easy-going personalities, that doesn’t mean they don’t have bad days or that all people with Down Syndrome are the same.
Also, don’t apologize or say “I’m sorry” to a new parent after a diagnosis of Down Syndrome (or any other diagnosis for that matter). These people just had a perfect baby and “Congratulations!” is a much better salutation.
The National Down Syndrome Society is a terrific resource; it’s the one Alex’s Developmental Pediatrician (the world-renowned Dr. Morton who is amazing) often recommends. Of course, I am always happy to talk about Down Syndrome and I welcome any and all questions!
Why is World Down Syndrome Day important to you? How does your family celebrate?
I’m a little nutty about celebrating things (my family sometimes rolls their collective eyes at my ideas)! But in my opinion, World Down Syndrome Day is another holiday! I wanted to go big this year since it’s Alex’s first year in school. We provided t-shirts to the kids in his class and asked them to wear them last Friday to school along with their craziest socks! I also went to St. Joe and gave brief talks about Down Syndrome with several classes. Any opportunity we have to share what Down Syndrome means to us is a great opportunity. I made some stickers that said, “I celebrated World Down Syndrome Day 2021” and gave them to some of the students and other people around town. We always get a shirt made for the day, and we all wear it. This year, we also walked 3.21 miles on Sunday.
It really is a reason to celebrate. And we celebrate all people with Down Syndrome, especially Alexander!
Anything else you would like to add?
THANK YOU! Thank you for being open to discussing this important topic and using your platform to be inclusive. We are thankful to be included in a work family that loves all of the McClains, especially the littlest one who’s rocking an extra chromosome!