Meet The Spychala Family: Karin and Her Daughter Helena

What are your family members’ names and children’s ages? Where do your children go to school, and does/do your special needs child/children attend school and/or receive other educational/behavioral services? If you have a special needs adult living at home, are they employed or attending a special services program? My name is Karin Spychala, and my daughter Helena went to North Central High School. After graduation, she was in the Skills for Independence, Transition and Employment (SITE) program at IUPUI for two years.

Where are you and your family originally from? Helena was born in Chicago, but we moved to Indianapolis when she was 9 months old.

Where do you live in Indiana? How long have you lived here? What brought you to Indiana? We moved back to Indianapolis in March of 1999. Chicago was too expensive, and we were able to get excellent therapy and medical care here.

What have been some of the challenges your family has experienced? How have you overcome some of these struggles? Helena was born with Down syndrome and was pretty sick when she was firstborn. She spent 25 days in the NICU and came home on a feeding tube and oxygen. She had several surgeries; the most critical was open-heart surgery to repair atrial and ventricular septal defects (ASD and VSD)—basically holes in both the upper and lower chambers of her heart. We had great therapists to move us in the right direction, and Helena is very healthy now!

Any advice you have for others who are experiencing similar situations and challenges? It’s very hard [for me] to be patient, but you just have to go at the pace your child can. I have always done the same things with her as I would have done with a typically developing child and always tried to include her in everything her peers were doing. We did dance classes, Girl Scouts, Sunday school, Special Olympics, Best Buddies, etc.

What are some happy memories that really stay with you? Were there milestones or accomplishments that your child hit that you never thought would be possible? Helena was voted prom queen by her peers in her junior year of high school! That was a night I will never forget. She also learned how to ride the bus to the IUPUI campus and volunteered and worked at the Hyatt Regency before Covid. She enjoyed her independence and had a very interesting schedule.

What college/university did your special needs child attend? How has school been challenging? What did you do in school to overcome some of these challenges? Helena was in the SITE program, and it was so cool to see her interacting on campus with her peers! I was so glad she got the chance to say she went to college like her friends from high school did.

What is your profession, and where do you work? I have worked in the hospitality industry for nearly 38 years. I worked at the Hyatt for 37 years and recently moved to the historic Omni Severin.

If you have children or a special needs adult still at home, in what activities are they involved? Unfortunately, due to Covid and some medical issues, Helena has been home-bound. We both look forward to when it is safer for her to be out in public again.

Do you have any family traditions? My mother was German, and Helena was extremely close to her. We go to the Carmel Christkindlmarkt to enjoy some German food and drink! We are also members of the New Apostolic Church, which is much more popular in Europe and has a strong German membership.

What are your child’s hobbies and favorite activities? Helena LOVES drawing and taking pictures. She has a creative eye and enjoys coloring daily.

Does your family have any favorite restaurants or food markets? We both love to eat! We have enjoyed the Berghoff in Chicago and Biscuit Love in Nashville. We really love the Swedish meatballs at IKEA! Helena will try ANY food and likes almost everything she tries.

What are some of the experiences you enjoy doing the most with your family/special needs child? What can be challenging when going places? Helena loves to shop. We have started to explore small towns and shops with a friend of mine. We catch up, grab lunch, and go shopping, which makes a nice day for all of us!

Where is your favorite vacation destination? Our family has a cottage on Lake Michigan in Ludington, MI. We spend most of my vacation time on the beach, along with a lifelong friend of mine.

Do you have a favorite sports team? Helena played Special Olympics basketball. I grew up in West Lafayette and went to Purdue, so we are Boilermaker fans.

What kinds of music does your family like? Helena likes to listen to dance music and has at least one dance party daily. She is always on the dance floor during wedding receptions dancing the night away!

Do you have favorite TV shows or movies? What are family dinners like? Helena loves the Big Bang Theory. We eat meals together always. The only dietary restriction Helena has is caffeine. She cannot have anything that contains caffeine, as it makes her heart beat erratically.

What do you like to do to relax? We like to watch TV in the evenings and spend time on the porch when the weather is nice.

Tell us about some companies and resources that have helped you and your family navigate the world of special needs. First Steps was a huge help while Helena was little; Down Syndrome Indiana had parent support groups that were helpful early on. We worked with some great therapists and teachers along the way; we all worked together, and I couldn’t have done it alone!

Is there something you are looking for that may help you/your special needs child? We are just waiting for the pandemic to get to a safer level so Helena can get back out into the community! Hopefully soon!

What would you tell someone who just moved to your community? We are lucky to have two excellent children’s hospitals in town! Network with other parents and advocate for your child!

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