Down Syndrome Awareness Month- REAL Perspectives from REAL Local Families: Matthew

This year, to celebrate Down Syndrome Awareness Month, we asked a few of our Playhouse families and friends to give their REAL perspective on what it’s like to love someone with Down syndrome. These blogs will be posted in a question and answer format.

Earlier this month, we posted about Henry and Adi. Be sure and click their names to read their stories too.

Meet Matthew – Answers from Matthew’s Mom, Judy

How would you describe your child with Down syndrome? What are their likes and dislikes?

Matthew (33) is a bright, compassionate young man. He has been described as a “man of few words.” He enjoys participating in sports of all sorts: yoga, basketball, bocce ball, bowling, track, cross-country skiing and snowshoeing. Dancing would have to be on the top of his lists of likes, along with Lego WII games. He delights in the food samples at grocery stores, the snacks after church services, and Saturday morning smoothies. If one asked Matthew what he does not like, he would say “nuts” (whole nuts, like peanuts or almonds).

What has been the biggest misperception about Down syndrome that you have experienced or encountered?

Misinformed people or professionals who try to limit Matthew’s potential have been a bit frustrating. Matthew understands so much more than he expresses; others find that out quickly when they hear Matthew chuckling about something he has overheard.

What are some wins Matthew has had, recently? What challenges is he working through?

Matthew was laid-off work for 14 months during the pandemic. However, he was one of the first workers called back to his community-based job; his strong work ethic, focus and overall positive attitude were cited as reasons.

Matthew made it to the state Special Olympics competition this year for his softball throw; he earned a blue ribbon at the Regional competition but met his match at the state level.

Matthew has dysarthria and dyspraxia, which hampers his verbal communication with others. He tries hard and uses other means to communicate his wants and needs when necessary. He continues Speech/Language Therapy on a virtual basis through the University of Wisconsin Speech and Hearing Clinic to keep learning ways to improve his communication skills.

What have been your most valuable resources?

The resources are many and varied, including Waisman Center preschool program for infants and their siblings (“Dew Drops”), other parents of individuals with Down syndrome, compassionate educators and therapists, Matthew’s younger sister who taught him to crawl and who advocated for him in high school, GiGi’s literacy and adult programs, family members who were willing to learn sign language and attend numerous therapy sessions, medical personnel who have been receptive to advocate for Matthew’s medical needs, Special Olympics year-round programming, and Matthew’s mother’s professional background as a school-based Speech/Language Pathologist.

What advice do you have for families who have a child with Down syndrome, who aren’t as far along the path, as you are?

I tend to remind others who are invested in Matthew that he thrives on routine/structure, foreshadowing of any changes, and clear expectations. Matthew tends to “center me;” he helps me, his mother, to remember what is really important in life.

 

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1 Comment

  1. Marie Cepeda on November 2, 2022 at 3:49 am

    Thanks for sharing especially your last two statements.
    My son is giving me a “true purpose” , but I’m learning the how.

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