Parent-to-Parent: Family Stories

Letter from a Referred Parent

Our daughter, Jane, is a Kansas girl who met and fell in love with a young man, John, she met at K-State when he was a foreign exchange student working on his Master’s Degree and she was a senior. John works for a company in Switzerland, which is what took them to that country. Our granddaughter, Anna, was born August 2008 in Switzerland.

They knew at about 5 months that something might be amiss with Anna as she was not sitting up or rolling over. They diagnosed cerebral palsy at about 11 months. But they started physical therapy at that 5 month time because of the concern and persistence of Jane and John.

I, Grandma, am a retired teacher and had some experience with kids with special education needs from having them as students.

Several special education teachers helped me right away. But I wanted to find a family with a child who had CP that was 1/2 to 1 year older than Anna who was aggressively seeking therapies for their child and who would be a positive connection for Jane and John–even though the miles might separate them.

I was referred to Families Together from the Infant/Toddler program in Riley County. I was immediately impressed with the kind and encouraging response I received when I called the Topeka office. I was told that a “match” would be attempted that met my age and “attitude” criteria.

Within a week (this was probably August of 2010), I received a call back that said you were working on the match and you would keep me posted as to your progress in finding a family. Within another week or two I received a call from Tammy from the Kansas City area. She has been WONDERFUL! Tammy emailed Jane right away and the two were going to meet when Jane and Anna came to Kansas at Christmas. Unfortunately, due to the very limited time of Jane and Anna (partially due to weather delays), Tammy and Jane did not get to meet each other (nor the children).

We emailed right away after Christmas and agreed to meet in Topeka (half way for both of us) in January when Tammy and her kids were going to be coming to the Families Together office. My husband, Tom, and I agreed to meet Tammy, her son and his twin sister, over lunch at a mall in Topeka.

Tom and I brought our computer and Tammy and Jane got to meet each other face to face through Skype and Jane got to meet Tammy’s son, too. Unfortunately, it was too late for Anna to be up (Switzerland time), so we did not get to introduce Anna to Tammy and her children.

Tammy and Jane had a good first conversation and Tammy quickly followed up with a detailed email of their progress and therapy program for her son. She has sent pictures and names of equipment, pictures and explanations of her son’s progress at various stages in his life, family pictures, lots of websites, iPad/iPhone apps that he likes and that seems helpful to him, videos of him as he has developed, and on and on. I can’t tell you how much it has helped just to connect with such a positive and kind person as

Tammy. I think Jane has found a “kindred spirit” and although they are both extremely busy and have miles between them, they know that each other is “out” there. In fact, Anna has been fitted with a “stander” this last week, I think partially because of Tammy’s son’s experience and Tammy’s soft encouragement.

I want to thank Tammy and Families Together for putting us together. It is very nice to know that someone who has gone through this is right there with us.

Letter from a Supporting Parent

When I agreed to the Parent-to-Parent match with the parents and grandparents of a toddler with cerebral palsy, I wasn’t expecting to meet old friends for the first time.

It doesn’t matter if you’re the “supporting parent” or the “supported parent,” there’s something to be said for sharing the challenges, joys, frustrations, and celebrations. There are feelings involved that others just do not understand, no matter how hard they want to and no matter how hard they try. In raising a child with disabilities, we are not just hiking the Flint Hills, but embarking on an expedition in the Swiss Alps. We hold on to each triumph, each victory, while awaiting the next. Through sharing them with someone else who is on the same journey, it gives us the fuel, ambition, support, and encouragement to allow us to continue to climb towards the next summit. Through sharing the journey with those who understand, we are no longer traveling alone, but know that there are others with us on the road, as we help each other along.

*Names have been changed to protect the confidentiality of both the referred and supporting parents and their children.