Kind-Hearted, Brave and Gritty: How Social Connections Help a Boy With Down Syndrome Shine Bright
I met this charming boy when we went to Michigan to watch our granddaughters play soccer. His sister is on their team, and I had the pleasure of sitting next to Lukas and his mom at the game. He was cheering the team on as their biggest cheerleader, complete with pompoms. His mom told me he was a twin with a girl on the soccer team. He has Down syndrome. It didn’t take much observation to see that he had a personality that brought sunshine and positive energy. I talked to his mom, who said he was mostly in mainstream inclusion classes. I could see he was well-behaved and I wanted to learn more about him. His mother describes him as kind-hearted, brave, and gritty.
Read this mom’s answers to my questions and see how being included in activities helped shape his outgoing personality. The above picture for the blog is of Lukas and Bunny. Bunny is a toy his grandma bought him many years ago and when Lukas started walking, he loved taking Bunny for walks. Now, 8 years later he still takes Bunny on walks. His grandpa rebuilt Bunny’s wheels, so they can continue going on walks together. Please find out how this boy wins the hearts of everyone he meets.
What are some of your child’s favorite activities?
Lukas’s fondness varies depending on where we are and who is around. For instance, if we are home and his siblings are doing their thing (i.e video games) you will find Lukas in his room playing with his cars. Cars are his favorite toy and our go-to gift (even from the tooth fairy), you can find him shaking Christmas presents trying to uncover the cars. If we are home and his siblings are outside, Lukas is right there with them playing soccer, basketball, football, etc. He absolutely loves to be included in their activities.
What is something your child is good at doing that is not reflected on tests?
Social interaction – outside of the classroom. We are constantly impressed with Lukas’ interactions with everyone around us, no matter where we are.
People make an impression on him, he remembers so many things about people (this year he even remembered his friends’ last names from school). If only, sight words were as easy to remember for him. 😉
If you could describe your child in three words, what would they be?
Kind-Hearted, Brave, Gritty
How old was your child when you knew he/she had special needs?
Our son is a twin, so we had to have a ‘big’ ultrasound very early into the pregnancy. We found out he had Down Syndrome in the first ultrasound, I was less than 12 weeks at the time.
What is one piece of advice you have for someone with a newly diagnosed child?
‘Diagnosed’ is such an open term – especially for our kiddos with Down Syndrome. I don’t see DS as a diagnosis (anymore), I see things like ASD/VSD as a diagnosis.
People say when they are pregnant “boy or girl doesn’t matter as long as they are healthy.” It is so hard to hear that now…..it is ok if your child has a diagnosis, it is ok if your child has health issues.
There are so many incredible people in the world who have dedicated themselves (putting their own families aside) to help your family – I constantly refer to them as “HEROS”. It is up to you to find them – yes sometimes it is tough (time/location/monetary amount) but I assure you that all of that stress is so worth it!!!
Additionally, if you are not comfortable with the options they are giving you, get another opinion. If you are not familiar with the information you are being provided, take 10-15 minutes and do your own research. I assure you that whatever they are telling you is not everything.
How do you foster self-care? ( either for yourself or your child or both)?
For our son, we are always getting him involved in the activities our other children are doing and for activities that are right for him. Just recently he started participating in Special Olympic events. Our family is extremely active and we try to find products/resources that allow our son to be part of activities with us (i.e. a specialized bike).
What are ways to help promote social skills you have found effective for your child?
Including our son as much as possible. His dad coaches our oldest son’s basketball team, he goes to practices with them and during games sits on the bench. His dad also is an assistant varsity basketball coach at our school, and as much as possible our son interacts with the team (before games/after games and team activities).
Our school district also has a LINK program, where a junior/senior is assigned to a student with IEPs (he gets a new LINK every semester). This program has helped Lukas be more comfortable during the school day with the older kids and for the older kids to get to know more about Lukas. He has made so many new ‘friends’ in this program – they are always coming up to him to chat at after-school activities. We truly believe that socialization for Lukas works both ways, for Lukas to interact with more people/students AND for people/students to interact with Lukas.
Are there any support groups you recommend for parents or children?
I never fully joined a group. We made friends with a family who has a daughter 2 years older, she is my support group. They have the same goals for their daughter that we have for our son, even though our kids are extremely different, so it is really easy to call/text her with questions (and vents!!!!).
What is one meal that everyone in your family likes to eat?
Our son used to eat everything and then after getting sick a few years ago he became very picky with his foods. Due to this our family LOVES to go out to breakfast together since there are several breakfast foods that our son will eat.
At home our favorite meal is Dinner, it is the only meal that we can sit down together. If our nights are crazy (with activities) there will still be two groups that sit down together at different times.
Please share anything else you want people to know. It could be something like the ways your child is awesome, your favorite family activities, or anything else you would like to share about your child.
You have to find things that fit with your family and your child. We all have different goals/wants/needs for our child, you are the only one that can access what is right. Take the recommendation(s) from others, take the highly rated school into account, meet with the highest rated physicians/therapists…..YOU choose what is right for your family.