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This is a young man that I have not met, but I can tell he is an extraordinary young man. My oldest daughter met his mom at an exercise class and said he would be a great subject for my blog. She said, “Mom, you will love this lady. She’s a bright light of positivity.” She went on to say she has a son with Down Syndrome which inspired her to write a book and create a blog. That sounds like my type of person, so my daughter gave me her contact information. We provided this mom with the below blog questions, and she said she would be happy to answer them. I was thrilled to learn that this young man is full of good energy, and his mom is as well. Carefully read her answers and perhaps find new ways to look at challenges.
Q: What is one thing you wish teachers know about your child that is not on the IEP?
A: Fortunately, living in a small district, all the teachers and therapists communicate with one another so they all know him well. But when Wil went from preschool to kindergarten, he scored at a 6-month-old level for stringing beads. He could string them with a pipe cleaner but not a string. However, the pipe cleaner wasn’t part of the evaluation so he scored much younger than his ability. I cried in the IEP over this test result thinking his OT would start working with him at a 6 month old level. The speech therapist spoke up saying, “That’s why we communicate as people here. We won’t just look at what’s on paper.” So I can’t pick out one particular thing. My wish would be that all teachers and therapists communicated in person. There is no substitute for that, no matter how detailed and comprehensive the IEP.
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: The example I gave above was one. But it’s really his drive to succeed in things he’s interested in. Right now he loves to play guitar. Fine motor-wise, positioning his wrist is very challenging for him. Not only that, he needs to apply pressure on the strings with his fingers. You can see how tired he gets, and the frustration he feels, but his desire to play guitar always wins over those feelings. As his communication is delayed, processing his emotions to reach this point where his desire wins has been a work in progress. It’s those of us who have been with him through the years who see what a victory it is to see him play the guitar without giving up. It’s been built on many small but important steps.
Q: How important is homework for your child? Is it just a burden, or is it a helpful learning tool?
A: I do believe the discipline of it was helpful for a time. For him to learn to sit down and read or do a few math problems when he doesn’t want to. I would tell him to go to his room and relax, then come out when he was ready to work. Sometimes it took 30 minutes, and sometimes 5 minutes until he was ready. But the practice of finding the strength within him to work, then feeling that victory was really important. Now he doesn’t do homework, but I believe it laid the groundwork for doing things he doesn’t really feel like.
Q: How old was your child when you first knew he/she had special needs?
A: Almost immediately after his birth. His low muscle tone was immediately detected. Then the doctor examined him and noted his short fingers, low set ears and small facial features. In 72 hours his genetics test results confirmed what we already knew, Wil has Trisomy 21.
Q: What is one piece of advice you have for someone who has a newly diagnosed child?
A: Challenges don’t have to be negatives. Surround yourself with proactive, positive people who are raising children with the same or similar disability. Then don’t get ahead of yourself. Take it one step at a time, and you’ll soon realize the triumphs that live in moments you never realized before.
Q: What is one meal that everyone in your family likes to eat?
Q: What advice do you have for interacting with children with special needs?
A: Get to know the child as you would any child and you’ll realize they may need additional supports but it’s nothing to fear or sugarcoat. Appreciate who they are as an individual.
Q: What activities do you recommend to other parents to foster self-care?
A: As mentioned above, surround yourself with positive, proactive parents in similar situations. Just being with people who innately understand without explanation is therapeutic. Do activities with these people as families, and as adults only. Both ways provide their own value of feeling supported. I personally get up early for quiet time to myself. But I know some parents don’t have this luxury as their children don’t sleep well. But find one thing that works for just you, and do it!
Q: Are there any support groups that you recommend for parents or children?
A: I love our Down Syndrome Support Team! (DSST)
Q: What are your favorite family activities?
A: As our kids get older, it’s a challenge to find activities as their typically developing peers are so busy. Also, life moves so fast for them to keep up. Our DSST created teen dates where our teens with Down syndrome just hang out in a church basement for 2 hours playing pool or games and enjoy each others company at their own pace. They also bowl together. As a family, we enjoy fishing, going to the pool, or just enjoying being outside in the summer. Wil is an outdoor kid!
Challenges don’t have to be negatives. Surround yourself with positive, proactive people. This is advice given by a mom who has embraced life and says that there are triumphs that live in moments you never realized before. Isn’t that true for all of us? That advice can apply to anyone who faces challenges, no matter what they are.
This young man is now 17 and when he hit puberty, his mom decided to write a book. The book is titled, “Stories of Wil: Puberty Part 1”. Here is the Amazon link. This is what it says on Amazon about the book, “When Wil Taylor was born, his diagnosis of Down syndrome was a surprise to his parents. Twelve years after fully accepting and embracing life with Down syndrome, the next surprise to his parents arrived – puberty. In Stories of Wil: Puberty Part 1, author and Wil’s mother, Christie Taylor, shares stories chronicling her early journey to acceptance followed by her current navigation of Wil’s new behavioral patterns associated with puberty and teenagehood. As no story is complete without a full set of characters, Christie includes the ripple effects on Wil’s twin sisters, his friends, his school experiences, and observations from the outside world. Christie reveals that though the challenges may be high at times, the joys of life are truly found in the simple things and in the villages we surround ourselves with.”
I love this and look forward to reading this book and hope that you will too. Celebrate the extra chromosome, knowing that it can be extra awesome! Her blog is called WILingness. Enjoy!