Photo by Lauren Artzner
Beyond Limits: The Story of Love, Progress, and Unconditional Joy
This is a former student that I first met when he was in elementary school. He was the cutest little guy, always wearing a tie to school. He owned many ties and wore them with style. He has Down syndrome and always was with a girl with Down syndrome in class. She was a calming force for him, a motherly presence. Sometimes they would fight as siblings, mostly with him bugging her to get a reaction out of her. Mostly though, she was encouraging him to do the right thing. My middle school class was book buddies with their class back then, so my appreciation of this guy started early. His elementary teacher gave me great advice and I looked forward to having this student in middle school. In his early years, he was pretty willful, and not always compliant with my directions.
Willful, ornery, or just plain wanted to do things on his own time with his agenda were words you could use to describe him. In elementary school, his teacher reported that he would rip posters off the wall and run out of the room. His friend would try to redirect him, and it worked about 50% of the time. I loved having him in my class. I wrote about some of our adventures in my book, “You Can’t Make This Stuff Up- Life Lessons from Special Kids.” Sometimes he took off from the class, and his friend was still there trying to get him to do the right thing. As he progressed through middle school, these behaviors became less frequent; he was compliant and a hard worker. I learned to take a different point of view from him and remain a friend with him and his mom. As he grew into adulthood, he became a helpful, calm person and was a delight to work with. He still loves Miracle League Baseball, and I have been his buddy. It is always great to see him and get a big hug. People who know him now describe him as a sweet young man. His mom has great wisdom to share about learning having its timeline and never thinking that learning is not happening.
Consider the picture I chose for this blog post. It is a fireworks picture that my daughter took on the 4th of July. Not only is that one of this young man’s favorite things to watch, but he heard the Katy Perry song, “Fireworks” and made the connection that the word has a silent e. Years and years went into teaching him how to read. Did we ever wonder how successful we were? Yes, we did, but he is proof that everyone learns on their timeline and I celebrate his learning and maturing into adulthood. This young man brings joy and happiness to everyone he meets.
Q: What is one thing you wish teachers know about your child that is not on the IEP?
A: I would like them to know that even though it looks like no learning is going on one day the light bulb is going to light. It might not happen in a timeframe when you see it but your work is not being wasted. Paul, who is largely nonverbal, was riding in the car with me when Katy Perry’s song Fireworks came on. He pointed to the e in Fireworks, turned to me, and said “Silent e”. No teachers there to see or hear it, but he had learned a lot of phonetics. He still uses those skills to put together words in his speech program.
Q: Scores on tests do not define the child. What is something your child is really good at that is not reflected on tests?
A: He is really good at reading people. He has a lot of emotional acuity and that is something that is very difficult to measure.
Q: How important is homework for your child? Is it just a burden, or is it a helpful learning tool?
A: Homework was both a burden and a bonding. Sometimes Paul would be interested and we would enjoy the homework. Sometimes he was tired, or wanted to have some say in what he did, etc, and it was not productive.
Q: How old was your child when you first knew he/she had special needs?
A: I knew at birth. While we had not tested for Down Syndrome in utero there were a lot of clues during the pregnancy. I thought of his future as being a fog on the horizon of his life at that point. But you come to realize that is the case for all your children, you just usually don’t have to confront it that early.
Q: What is one piece of advice you have for someone who has a newly diagnosed child?
A: Relax and enjoy them above all else. They can’t be your project. Yes, there will be special efforts that will need to be made on their behalf, but If you love them and can adjust your expectations they will teach you more than you can ever teach them.
Q: What is one meal that everyone in your family likes to eat?
A: Tacos ! All those choices of toppings ! Something for everyone and you can make every bite different if you want. And no one gets upset if your plate is a mess !
Q: What advice do you have for interacting with children with special needs?
A: Treat them with the respect you would extend to anyone else, and perhaps with some cues from a parent, sibling, guardian if they are present.
Q: What activities do you recommend to other parents to foster self-care?
A: I find this a difficult question. Being a single parent limits some of the opportunities I might have liked., I turned to hobbies that were manageable for our life like cooking. I also turned to meditation and found that while the opportunities to go for a spa day might be out of reach, the inner journey can be interesting and sometimes scary.
Q: Are there any support groups that you recommend for parents or children?
A: Not really. Most of my support came from the staff, family, and friends who knew Paul the best.
Q: What are your favorite family activities?
A: Seeing the Fourth of July fireworks (Paul wears ear protection), going to SCENE 75 is our current favorite, and going to certain restaurants that have some family history.Pre-COVID it was movies, but we can’t seem to get back in that groove.