A Day in the Life at UNMC

A day in the life: Justin’s story

Justin Harold Bainbridge was born on June 23, 1989, at 1:30 a.m.

Around seven and a half hours later, while my husband Jeff was out buying me a bouquet of flowers, our pediatrician told me that he was 99.9 percent sure that Justin had Down syndrome.

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I can remember what the doctor was wearing. I can remember where he sat when he began speaking. I can remember pinching my arm, telling myself to wake up, that this was a dream – I left a bruise on my arm that lasted for days.

At the time, I knew little about Down syndrome. (October is Down Syndrome Awareness Month, by the way.)

When Jeff was growing up on a farm in rural Nebraska, his neighbors had a son with Down syndrome who had lived his entire life at the state facility in Beatrice.

In my farming community, there was Denny, who had developmental disabilities. He lived at Beatrice and came home for Christmas. I can remember being scared of him because he made a lot of noises during the Christmas Eve program.

Oscar and Pat had Down syndrome – they were never allowed to go to our country schools or the town school where we all went for high school. They had no friends their age and were always with their parents/immediate family.

That’s all Jeff or I knew about people with developmental disabilities – you shipped them to the Beatrice State Home or kept them at home with no opportunities for education or social interaction. I vividly remember wondering if Justin would be in diapers the rest of his life.

When Justin was 6 weeks old, Jeff and I went to the Munroe-Meyer Institute for the first time. We were young and scared, and by this time I was completely frazzled both emotionally and physically. We saw Dr. Bruce Buehler, the director of MMI at that time.

Dr. Buehler had already looked at the genetic testing of Justin’s blood work, done by MMI, which proved that he had the standard Trisomy 21 – three number 21 chromosomes, better known as Down syndrome.

Dr. Buehler went on to explain that we had to have high expectations for Justin in everything in his life, especially behavior. Justin’s behavior as a child and an adult would determine his acceptance into society. He even talked about marriage and sex for Justin (two things that were definitely not on my radar screen for Justin’s future).

He spent a great deal of time explaining the medical meaning of the word “retarded,” how it could be used by the ill-informed as a slur, how we might need to prepare ourselves for that. And he made the point, forcefully, that however anyone else might react to Justin’s Down syndrome, the most important thing was that my husband and I provide high expectations and loving support.

Remember, in 1989, the wording used to describe individuals with an intellectual or developmental disability was different. Area school districts first used the word “mental retardation” in referring to Justin, later changing the term to “mentally handicapped.”

When I went to the Omaha Public Library just after Justin was born to find information about Down syndrome in the card catalog, there were no subject cards under “Down syndrome.” Looking under “mental retardation,” I found a subject card that said “See Mongolism.” Justin was called a Mongoloid by a medical doctor when he was 2 years old and getting stitches (this did not happen at MMI or UNMC).

We started the Scottish Rite Speech Therapy Program at MMI about two and a half years later, receiving free additional speech therapy for Justin above and beyond what he was getting through the Millard School System. We now had a third child, Kristin, who was one month old when we started this speech therapy. My double stroller and I were very good friends.

Kim and Justin with Justin's sister, Kristin, who has worked at MMI's Camp Munroe since 2010 and volunteered before that. She is now at the University of Washington in Seattle getting her master's in Speech Language Pathology. Justin's life influenced her career choice, her mother says.
Kim and Justin with Justin’s sister, Kristin, who has worked at MMI’s Camp Munroe since 2010 and volunteered before that. She is now at the University of Washington in Seattle getting her master’s in speech language pathology. Justin’s life influenced her career choice, her mother says.

That summer, Justin began running away from me in grocery stores, parking lots and other places. With a new baby and a 5-year-old, I was finding my toddler could take advantage of even a momentary distraction to slip away. At one point, we caused a lockdown at Target because Justin couldn’t be found. When Justin was about 3-and-a-half, we returned to MMI, to the psychology department, for family counseling.

On the first visit, with the whole family there, we spoke with a friendly staffer in a large room as Justin played, not listening to me when I told him to stop doing something or touching something. Between talking to the staffer and keeping an eye on Justin, I did wonder about the large mirror that dominated one wall of the room.

After the meeting, the purpose of the mirror became clear. This little woman – I still think of her as “the dynamo” — came out and, after introducing herself, said “Justin has you wrapped around his little finger. You think, because he has Down syndrome, he can’t learn how to behave.”

She’d been watching us behind the mirror. We took her advice and started family counseling. For nine months, we hauled all three children down to MMI for behavioral counseling – a 11-month-old, a 3-year-old and a 5-year-old.

That was the first step. And since that time, Justin has received additional services from MMI.

He has attended Camp Munroe, a day camp held in the summer for children ages 6 to 21 with developmental disabilities. He spent one summer with his best friend, Jerus, who also has Down syndrome, working on his handwriting skills at the Handwriting Clinic. He took part in the Arnold Stern Program, additional speech therapy and is now doing the Garden Club, Thursday Night Rec Therapy, Community Outing Club and Adult Cooking Club.

Justin and Jerus
Justin and Jerus

Today, Justin and Jerus are sharing an apartment. They only receive a couple hours of help a day; the rest of the time they are on their own. Justin is currently working at Prairie Life Fitness two days a week, and he’s taking classes two days a week at Career Solutions (Ollie Webb Center). He takes dance lessons, is in the Next Chapter Book Club, plays baseball, competes in Special Olympic Power Lifting, greets at our church and also helps with Sunday School.

He threw out the first pitch at the Storm Chasers’ game on Aug. 1 for Down Syndrome Awareness Night. He’s also a sports and Husker enthusiast, and he enjoys an occasional beer. (The rules are “one and done” and only on weekends.)

Our lives were forever changed the day Justin was born, and I thank God every day for giving us the gift of Justin.

MMI has helped us along the way, and I know they will be there for us in the future as they continually develop more adult programs. As we continually save more children with developmental disabilities and they live to adulthood, MMI also is adapting to those changes .

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20 thoughts on “A day in the life: Justin’s story

  • I sit here with tears in my eyes after reading this, what an awesome FAMILY, and story. Thank you for sharing Justin with us!!

  • This is one beautiful story and it made me cry….there are many more such stories of these beautiful “forever” children. I have two second cousins (brother/sister) who have Down’s born in 1975 and 1978 respectively. They have the gift of seeing through a child’s eyes for the whole of their lives — sweet and innocent. Jorg and Karin have helped their parents work a restaurant, a bed and breakfast, and a little country store. More recently Karin has lost all but a small pin point of vision and so she sits in the restaurant and greets the customers with her beautiful smile. Thank you for sharing your story and for allowing me share a little of mine.

  • Thanks for sharing your story,…very heartwarming. I have some great friends whose story is much like yours with their wonderful daughter, Paige, who is 25 y/o and has Downs. She is truly one of the most wonderful young ladies and EVERYONE who meets her loves her. Her parents have never excluded her from things and she is so well rounded. Looks like your Justin is doing wonderful ….thanks to his great parents and MM.

  • Kim, what a wonderful story! I’m so happy I have the opportunity not only to know and work with you, but to know Justin as well. You both are awesome!

  • What a wonderful testimony to the great work done at MMI. Kudos to all who provide the services that have such a positive impact on people’s lives!

  • Kim, what a great story. People forget how far the lives and expectations for folks with disabilities have come. What a wonderful change and it’s families like yours who’ve made those improvements a reality. Congratulations on all Justin’s successes. I tip my hat to you and wish you many more fantastic achievements.

  • Kim,
    Your story brought tears to my eyes! What an amazing journey for both you and Justin 🙂 I loved reading about how well he’s doing. (One and done is a good rule for all of us 😉 So glad you decided to blog about it. Honored to have worked with you and for MMI. It’s truly a wonderful place.
    Tell the board Hello for me!

  • Kim, I used to work with Jeff at Commercial Federal and remember when you had your first child. I was raised with a family friend that had downs and he taught me so much about love, laughter and friendship. Today my daughter’s husband has an uncle that has downs and he is truly a blessing to everyone he comes in contact with. My husband and I have always had a special place in our hearts for these angels of God. Thank you for sharing Justin with us and your beautiful story. Justin is too blessed to have you and his family to Love.

  • I remember Justin and Jerus from Ollie Webb days and overnight camp at Carol Joy Holling camp. What a neat write up! It is fun to see what Justin is up to in his adult life and how MMI has been a part of his life!

  • Kim,

    Thank you so much for sharing this story. Your family has always been truly exceptional! It was such a privilege to grow up and go to school with Justin and Kristin!

    -James

  • Kim and Justin are such amazing ambassadors for MMI. What a journey it’s been so far! Keep up the great work, Justin!

  • What a beautiful story. We both really enjoyed it and aren’t surprised that you would figure out what’s best to do. Take Care…Mark & Vickey Kleinsmith

  • Kim so proud of you for sharing your story. I really miss our Denny. I could not get back for his funeral as road were blocked with snow., but I had just been back to see him in November .The Lord blessed us with 64 year with him Sister Judy

  • I worked with Justin at PL. I remember encouraging him to move into an apartment and be independent. So good to hear he is doing well. Also a blessing to hear he is still inspiring people as I saw him do at PL. God Bless.