Today we continue our two-part interview with Joan Medlen. Joan is a nutritionist who coaches people with intellectual and developmental disabilities and their families to create quality lives, and quality health with a community vision.
I’ve heard well-meaning people (families, friends, and professionals) say things like, “I feel really sorry for parents who have children with dual-diagnosis.” How would you respond?
It’s hard not to think that, I suppose. I’d offer this thought. Long ago I came to realize that we’re all living the best and the most difficult lives we know. For me, what those folks see as difficult is just everyday life. It’s not hard. It is what it is. When others hit a tough time with their children, they often say, “I shouldn’t be whining/complaining to you.” Of course you should! Whatever you are experiencing is, in comparison, as hard as anything I go through. It looks different, but it’s not.
The same is true for when things are good. Each child brings a different set of challenges – gifts – into a family. Down syndrome is an unexpected surprise (regardless of whether you learn about it before or after your child is born). So is everything else: heart surgery, Celiac disease, speech (or not), reading, and extra labels like autism spectrum disorders. It stuns you for a bit, and then you adjust to your new reality and move forward. Families of kids with Down syndrome find themselves in Holland. We go to Mars! But once we’re there we find it’s a great adventure.
The best thing you can do is be open and inclusive. Rather than comparing or worrying about how hard a situation may be, or being afraid, focus on being inclusive. Say hello. Offer a smile. Say “hi” to the child. Ask if they need some help if they seem to be struggling. Those things go a long way. For anyone – regardless of labels.
What has changed your perspective the most on this journey of Andy’s life?
My Mom worked as a teacher in the vision program here when we were kids. She taught in one of the first Early Intervention Classrooms in the state. The lessons we learned – that we were completely unaware of – prepared me to be Andy’s Mom. After he was born, she taught me the most important thing of all: he is a wonderful, valued, and extremely loved person. She taught me how to advocate – with laser precision – without anger or shouting. She taught me that “data” is what you allow it to be and can answer more than one question. She also taught me that the key to everything is inside my child.
For his part, Andy has taught me invaluable tangible lessons as a Mom and as a health care professional. I’ll never be the same. Probably the thing he has taught me the most has to do with communication. It’s not the words, it’s the message. To hear the message, I must truly listen. That’s true of everyone – not just those who do not use words or who have Down syndrome or another disability. In every moment, if I want to hear the message, I must open my mind and all my senses, and listen.
Together, Andy and my Mother taught me a key lesson: be very careful about what I recommend. The balance of being a parent –especially to more than one child – and implementing all the recommendations in the way they are often presented is overwhelming sometimes. I try very hard to partner with people so that we’re figuring it out together in a way that works in their home and within their value system. I avoid “should,” “must,” and “every time” at all costs. Those words brought me to tears more than once because the recommendation they were attached to was overwhelming.
I’ve been extremely fortunate that my walk with Andy includes hundreds of other families and people with Down syndrome of all ages and stages. Collectively they have changed me and given me a great gift. I choose to work in this field not only because there is work to do, but also because they are the people – the families and the individuals with DS – who I choose to serve.
Are there any resources/tips you’ve found beneficial that you’d like to share?
My listserve on Yahoo Groups: ds-autism. (http://groups.yahoo.com/group/ds-autism/) There are amazing families on the list. They support each other implicitly. We’re over 1400 members strong now, and each one has a family member with what we call, “ds plus.” We found that it was a place where people who felt they were following a different path – whether or not autism was involved – felt comfortable sharing. We review every person who requests membership and require them to be a family member.
Visual Strategies for Improving Communication by Linda Hodgdon. She has another book, but this one is the best choice. It has the foundations to build on that will work for your child.
Food Chaining by Cheryl Fraker et al.
I also like the IMPACT Newsletter out of University of Minnesota
Sleep Better by V. Durand
Laying Community Foundations for Your Child with a Disability It’s out of print, but there are copies through sellers on Amazon.
And your blog is high on the list now!
Wow – Thank you so much Joan! I know so many families will find your perspective and knowledge helpful as they navigate this path. I appreciate your willingness to share what you have learned through experience with my readers.