Ages and Stages, Autism, Speech & Language, Uncategorized

DS/ASD as I know it: An Interview with Joan Medlen (Part 1)

Joan Medlen, MEd, RD, LD has practiced in the field of nutrition for over 25 years. Her work focuses on coaching people with intellectual and developmental disabilities and their families to create quality lives, and quality health with a community vision. She’s authored two books including The Down Syndrome Nutrition Handbook and Cooking by Color, Recipes for Independence. Her website is http://www.downsyndromenutrition.com/

Tell me about Andy! I see updates on Facebook and would love to know more about him. (What are his favorite things in life, who he is as a person)

First, it’s important for me to say that I have two amazing men as my children. It’s a little weird to think of them as “men,” since they’ll always be my babies. Ryan is now 26 and working for the City of Houston as a City Planner.

andy2
Andy celebrating his uncle’s birthday

Ryan and Andy are really very similar in temperament. They’ve held my heart captive (and their father’s!) since before they were born in a dynamic and delightful way. But because of the work I’ve done, people hear primarily about Andy. So I like to point out that he has a brother, too.

It’s true that if you are a Facebook Friend so you hear a lot of bits and pieces about what Andy does and how he influences me each day. He is, however, far more than what his mother shares!  Here are some ways that I describe him:

You’ve heard a lot about me in the introduction. Now I would like to introduce you to Andy. Andy is now 24-years-old. We tend to think about people in terms of the labels used when they are introduced to us. Andy’s include Down syndrome, autism, celiac disease, and he does not speak.

But Andy is much more than his labels. I don’t know how people miss who he really is. ANDY IS:

  • His eyes light up a room when he smiles.
  • He is an amazing judge of character; he has never been wrong when he chooses not to like someone. I’ve learned to trust his judgment.
  • He is a chick magnet. Seriously. Enough said about that.
  • He is empathetic, always offering me an “I’m sorry kiss” after an aggressive outburst or andy1when others treat him badly and I come to “save the day.” Somehow he thinks that’s his fault.
  • He is compassionate. When life is overwhelming, in my work, with his teachers, in life, he gives me space. (Never mind that I might be absolutely frightening to be around!) He was amazing when I was injured a couple of years ago. I had 7 broken ribs in 11 places and spent 6 weeks in a chair in the living room. Not once did he disturb me or try to hug me. He knew not to bother me.
  • When things are going well, we are rewarded by learning and an enjoyment of life that is incomparable to anything I’ve ever seen.
  • His joy is contagious. I have never seen someone scowl when he does his happy dance around a room – or the grocery store – even if they think we’re a bit odd.
  • When he loves, he loves with abandon.
  • He communicates well, but you must be a good listener to hear him.
  • Andy loves being outdoors. He revels in feeling the wind whoosh around him.
  • He loves riding his bike. He is in complete control (we tend to assist the motion) and often surprises us with where he wants to go. When he was in high school he used to ride the bike in the hallways. They thought it’d be a great way to encourage him to go to Adaptive PE, which he didn’t like. He kept turning the bike into the lockers. My brother, who teaches at the high school, saw this happening one day and started laughing uncontrollably. While they were busily telling me they didn’t think he understood the steering piece, my brother knew right away that Andy knew exactly what he was doing. How did he know? Scott, my brother, knows the look Andy gets when he’s being mischievous. Like I said, you gotta be a good listener to hear his messages.
  • He loves making connections with people. Now that we’re not in school, this is a new challenge. For me, and the people around us, more than for Andy. When Andy sees someone interesting, he finds away to grab their attention and flashes his brightest smile. He’s made good friends with the guys in the Meat Department at New Seasons. He loves being in charge of what we are eating for dinner.
  • He exercises amazing power over all of us with his one word, “Yah.” We are mere puppets when he uses that word. When life is good, it’s really good. It’s fun to be around him. Andy taught me the meaning of doing something for the heart of it.

What was the process like diagnosing Andy with ASD?

Andy’s diagnosis of autism must be one of the most documented experiences out there. It was both the best and the most difficult thing I’ve ever done. You can read a lot about it in the article in Disability Solutions about Down syndrome and Autism.

What’s not in that article is as important as what is in the article. We had really struggled with school. Andy had a very unfortunate classroom experience and lost many, many skills during that time – including the few words he did have. After two years, those skills and words were not back.

I was fortunate to be involved with the Down Syndrome Medical Interest Group and asked one of the coordinators, Bill Cohen, to help me decide where to take Andy for an independent evaluation. I sought the opinions of people who knew what this looked like rather than school-based assessments. At the time, the medical community was just coming around to the notion that people with Down syndrome could also experience a another diagnosis like autism spectrum, ADD/ADHD, or depression. So I needed to be sure someone was open to the idea.

The other key thing that happened was that we saw every type of specialist possible. These were the first exhaustive evaluations he had in his life – he was nine. It’s still the only IQ test he has had. The speech evaluation  – with a specialist in augmentative and alternative communication – was so amazing that I cried for 20 minutes. She told me the most powerful thing ever: “It’s clear he can make a choice.”  I knew that, but had been having battles with the school team about it for over a year.

The entire trip was an emotionally draining trip, but the people who we encountered were amazing. The team at Kennedy Krieger was great, of course. But there were many other people: on the plane, at the car rental service, at the hotel, at the McDonald’s (yes, folks, you read that right!) where we ate lunch every day. One day I returned to the hotel sobbing and couldn’t get in the valet parking lane because of all the cars arriving for the baseball game nearby. The Valet had been looking for me. He ran over to tell me he’d take care of the car. When he saw my tears, he blew his whistle for assistance, told his colleague what room were in (he knew?), put Andy on a bell hop cart, and told him to take me up to our room. The next day he presented me with signed baseball cards from the Baltimore Oriole players who had come in to the hotel after the game.  I have story after story from that week. Amazing people were placed in our path. I knew I had made the right choice.

The process itself was not that bad. In part because I sent binders and videos for the team to see weeks before we arrived. I was so accustomed to my data and input being ignored, I didn’t know what to do when each one of them pulled examples from the information for why they chose to do a certain activity or assessment. The entire experience was empowering. We did one intense evaluation a day. Only once did we do two. That’s as much for Andy as me! We needed the break. We typically arrived every day in the morning, spent 2-3 hours in assessment, and then went to lunch. After lunch we went to the park to swing. Then back to the hotel to swim in the pool and have our dinner picnic in our room. I brought all of Andy’s videos with me – he couldn’t go to sleep without seeing this particular one. The conference staff let me rent a television and a VCR for the week. I was dreading the cost (we originally were to stay at a low-cost hotel, but the heat had been turned off and we were freezing so we moved to a Hilton). At the end of the week, they showed up in our room, all four of them, standing in a line. With big grins they told me they had talked to the management and got the cost written off for me.  Needless to say, I got the names of every person who gave us so much good care and wrote a glowing letter to the management. What a gift!

And, like so many of us who have kids who have more than one label, the confirmation of Andy being on the spectrum was almost a relief. Not because I wanted it, but because it was an answer. And it made sense. Many families talk about this. It’s like a boulder is lifted off your shoulders. You finally know which way to look for strategies and tools rather than being pulled in hundreds of different directions.

As I said, the entire process was the most difficult and the best thing I have ever done with regard to Andy.

Joan thank you so much for answering some of my questions!

Stay-tuned for part two of my interview with Joan including how to responds to “well-meaning” advice and tips for parents going through the process.

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