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Nine Years? Already?

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When I read May is National Celiac Disease Awareness Month, it took me back. Back eleven years. We’ve been gluten-free for nine of those years. As I thought about our transition, I realized it’s not been the nightmare I thought it would be. That’s a good thing. How we view food has changed a lot. Overall, our habits haven’t changed that much.


Now that’s interesting.


We were lucky. Andy’s road to Celiac disease had enough classic elements that it wasn’t a big challenge. It started the summer of 2000. We had just  hired someone as a support person because I was going to be traveling a lot over the summer. Meagan was working and earning her bachelor’s degree in education. She has a nephew who has Down syndrome. She seemed a perfect fit. After two weeks of training, I left for two weeks in Ireland for work. I was a little nervous, but Andy seemed to like Meagan.


When I returned, we swapped notes. She told me that every day, no matter where they were, Andy was experiencing copious loose stools. Sometimes they made it to the bathroom, sometimes they didn’t. After a couple of the more “colorful” stories, I looked at her, my mouth gaping and said, “And you’re still here?!”


It took Andy longer than many to get the knack of using the bathroom. He had only really been reliable for a year at this point. We had been turned away from activities, had people refuse to work with him, and fought to stay in the general education classroom for even part of the day because of it. This was not happy news. Yet Meagan stayed. She knew there was more to the story and she already had fallen for Andy’s charm. She was hooked.


Slowly, my dietitian skills began to kick into gear. I recalled listening to a lively discussion about Celiac disease at a meeting of the Down Syndrome Medical Interest Group –USA a few years before. They discussed a study that had not yet been published about Celiac disease in people with Down syndrome. The range of symptoms was stunning. This was not at all what I had learned in college.


I spent the next month really watching Andy and dissecting what was different in his life. We had made just one change in over-the-counter medications. Off we went to the doctor for some blood tests. I learned the results of his Celiac panel (a combination of lab tests that help screen for Celiac disease) just before leaving for a conference. The tests came back “inconclusive.” Rex, my husband, was not willing to do a gluten-free trial at that point. Mostly due to fear of the unknown, I think. Without his support, it wouldn’t work.


While at the conference, I asked my colleagues about the situation. One suggestion was that the filler in the new OTC medication may have triggered lactose intolerance. “Ok, I can work with that,” I thought. Home I went to eliminate dairy from Andy’s diet.


We were rewarded with the end of Andy’s “life-limiting diarrhea” and heaved a sigh of relief. Not one month later I read an article in one of my journals stating lactose intolerance can be a symptom of Celiac Disease.


Oh. No.


I didn’t have the heart to tell anyone. I decided to play the waiting game.


Fast forward two years.


It’s Andy’s freshman year in high school. We negotiated a placement in which he spent time in a resource room and also attended a couple of general education classes. This was a big deal. Our neighborhood high school had not had a student with Andy’s support needs who was not a wheel chair user in many, many years. We weren’t exactly “welcome.”


That’s when it returned. Life. Limiting. Diarrhea.


There was “drama” at school about it that I don’t want to repeat. Let’s just say events that occurred were on the list of abuses Andy has experienced. It the need for protective action distracted me from his health issue. It's the most traumatic experience he and I had during his school years.


A couple of weeks later, we’re back at the doctor. I came armed with new articles about Celiac disease in people with Down syndrome and the recent recommendations about Celiac Disease in the Health Care Guidelines for Children with Down Syndrome. Andy’s pediatrician and I do a lot of learning together. He’s really good about it.


We did another Celiac panel. Again, it came back inconclusive. But this time two of the three tests were elevated. Just not the right two to be a positive screen. This left us with two options:

  • Diagnose using a gluten free challenge, or
  • Do an endoscopy and biopsy his gut to see if there is damage.


Because Andy had such clear symptoms, we chose to the gluten-free challenge. The risk to this was if it didn’t help, then he had to go back to a regular diet for three or more months before we could do the biopsy.


We were lucky.


In less than seven days, the life-limiting diarrhea stopped.


Yep. Just like that. (:::finger snap:::)


That was good enough to earn the diagnosis of Celiac disease.


That’s Andy’s story about the road to a diagnosis. Compared to many, it’s a pretty direct path. The average time from first symptoms to a diagnosis of Celiac disease for people without Down syndrome is eleven years!


I like to think that people with Down syndrome are luckier. That they’re diagnosed more quickly.  Though I’m probably fooling myself. I like to think that because there’s been a real push for awareness within the Down syndrome community.

Celiac Facts Page 1w

 
 
While I was writing this post I realized I had never seen a fact sheet specific to people with Down syndrome on Celiac disease. So...Here it is!  


Wellness Walk Talk Fact Sheet: Celiac Diesase in People with Down Syndrome

 

 

 

Does your child have Celiac disease?  Do you?   Share your story below. Everyone learns when stories are shared.


Next up: "To Be or Not to Be....Gluten Free."



Loosen Up and Break It Up: Appetizers Save the Day

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{jcomments on}Loosen Up and Break It Up: Appetizers Save the Day

 

broccoli girl

 

 Does your child….

  • Insist that foods can’t touch each other on the plate?
  • Start grazing as soon as you begin to cook?
  • Skip vegetables at meals, but eats them at lunch and other times?

If you answered yes to any of these, this blog is for you.


(The "child" referenced above can be any age, and doesn’t need to have any sort of disability. It could be your partner...)

 

Readers who have known me a while know I am the Mom of a young man who has both autism spectrum disorder and Down syndrome (along with celiac disease and uses few words). What that means is that we experience many of the joys of the sensory challenges and rigidity associated with folks who have ASD as well as Down syndrome. He is a great teacher, my child. I learn a lot that I apply to my work as a dietitian coaching families of and adults with Down syndrome and related disabilities and many other areas of my life. Tonight he reminded me of an effective groove we’ve created to be sure he gets his vegetables.

 
Whoever said that you had to eat your dinner all at the same time and from the same plate?  The way I see it, this is Andy’s version of an appetizer. He eats them while we cook.

From my perspective, as the Mother and primary cook of dinner, it’s a great way to keep him thinking about the meal being prepared. It also stops him from grazing the pantry for something easy to reach to eat while I’m cooking (usually chips). And if I’m late with dinner – which means it’s going to be done after 5:05pm – it keeps him from falling apart because the routine is off (You know he’s going to starve if dinner’s not on the table at 5:00 sharp!).


Though we don’t do this every night, we do it most nights. It goes like this. When it comes to vegetables, Andy prefers those that can crunch. In fact, when he goes grocery shopping with his Dad, you can find him in the huge store by following the trail of broccoli bits he leaves behind. (The folks at WinCo are attached to Andy, and are great about it.)  Though is favorite is broccoli, he will also consider celery, baby carrots, and romaine lettuce hearts. I cut up about a cup of them and put them on a small plate that I leave on the counter or by his favorite chair. He snacks away and before you know it, he’s eaten a cup or more of raw veggies. We both like broccoli the best (I like to eat the sweet part of the stem). It’s a very nutrient dense vegetable and offers some fiber as well.


When dinner is served, he’s still happy and relieved – just not frantic – and digs right in. And yes, sometimes he even eats more vegetables.


Think about the effect. Not only are the veggies more nutrient dense, because he is eating them raw, they have more fiber and begin to fill him up. By the time he gets to the table, he is feeling a little bit full. Ok. He’s not frantic about eating if I’m late.


This is an example of what I mean by promoting health by using grooves. Andy likes crunch. Rather than chips or crackers, I offer broccoli or apple slices to meet that need for crunch.  When I first started this, I if I didn’t get it set up before Andy got to the chips, I allowed both. That’s when I realized he liked the broccoli better in that moment. These “appetizers” are a regular part of our day, a groove. So much so, I never thought to share!


It’s a fine strategy for those who are extremely interested in meal preparation (so much so they sneak a taste here and there). Limit them to the vegetable plate. It’s also good for those who can’t let the food touch another food. Just offer one vegetable. There’s nothing else to touch! It also lowers their stress about that issue, making for an easier meal time experience for everyone.


What raw vegetable or fruit does your child like?  Consider including a healthy, easy, vegetable appetizer when your child comes into the kitchen to join you while cooking. Make it one they like. If you start when they are young, you might just create a useful groove!


If you’re not sure what foods to try, have a tasting party! Methods for successful tasting to expand food choices are included in My Tasting Journal: Keeping Track of Foods I Try. An electronic book inspired by some “list makers.”

Happy snacking!

joan sig

Let Mom Do the Cooking

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Let “Mom” Cook the Meal.

When I started to blog a few years ago, I named the blog, “An Open-Faced Sandwich.” That was because I was feeling my role in the Sandwich Generation pretty intensely. It was a bit of a Panini press.  I’ve long accepted that I will never leave a more involved parenting role. Andy will always need Rex and me to be an integral part of his life. But I was not prepared for the other side of the sandwich press – my parents needing me more. These years helped me realize that this is a key element in The Wellness Walk we are all on. One of the greatest challenges of supporting someone with Down syndrome and related disabiltiies (whether family, friend, or paid support), is the many things that influence our overall attitude. If you're feeling pressed from all sides, it's hard to be obesrvant, patient, and collaborative about things.

Now that I’m past the more intense moments of that time, I can also see the similarities between supporting people with IDD and supporting our aging parents. It’s stunning really.

For example, as our children with Down syndrome and related disabilities (IDD) age, parents must focus on the supports their child needs for a life separate from them. Sometimes families create a type of co-housing arrangement. There are as many ways to do this are there are families!

At a certain point, if we are lucky, we look at the same types of decisions with our aging parents. We look at what they need to be able to stay where they are – if that’s what they want to do – or we look at some other living arrangement that might include co-housing.

Central to both these situations is how our child or our parents envision their life. Many times the types of supports they need are the same too:

  • Visual cues for independence
  • Setting up the environment to promote success
  • Various types of supports for the things that are a challenge.
  • And the question that I always ask, “How will food be handled?”

Many young adults are able to live on their own with appropriate supports. When it comes to food, those supports can include:

  • Help with menu planning
  • Help with grocery shopping
  • Assistance with cooking or
  • To have meals provided.

I wrote Cooking by Color: Recipes for Independence as one of those tools. At the time I didn’t realize how pertinent it is for people who may be dealing with the effects of aging too!

When my Mother was battling cancer, the last thing she wanted to do was cook. I stumbled across a wonderful service created by a chef that provided flash frozen entrées for people.  (What’s for Dinner? in Sellwood for those of you here in Portland) They did the cooking. We just had to order from the menu and pick it up. It was great for my Dad. It was a little pricey, but a great option.

Many people with IDD who live on their own do not want to learn to cook. They do, however, want to live away from their parents, on their own. Usually the solution is to use frozen meals from the store.  Using frozen meals all the time has some risks. They’re typically very high in sodium, for instance, which can be a problem. Some folks need an easy chew menu to eat safely. Some folks need a gluten-free menu. And purchasing frozen meals for everyday use is expensive.

Here’s a solution for those of you whose adult children or parents struggle with cooking and who live on a limited income: Mom’s Meals™ 

I first ran into them at the Food and Nutrition Conference and Expo in October. They were relatively new on the scene at the time. In fact, when I looked, I couldn’t see that Oregon was covered. I recently received an email from them – my how they have grown! They now are working with agencies in more than 30 states and offer a variety of specialized menus such as gluten free, heart friendly, carb-controlled, vegetarian, and all are diabetic friendly. 

Mom’s Meals™ is a family-owned business in Central Iowa. They work with a number of agencies as an approved home-delivered meal provider. What that means is that your child’s waiver and your parents Medicaid may be able to pay for the food. They also have a private-pay program. The food is then delivered right to their door – anywhere in the states they serve. They “specialize in difficult to reach homes,” so unlike community-based programs who are restricted by budgets and geography, they can reach you. If Fed Ex goes there, they do, too.

Somewhere along the line someone decided that to live on your own as a person with a disability means you have to cook all your meals from scratch. I think providing individual supports means providing what the person needs to lead a quality life with the least invasive supports. Many people also think that being able to stay in your home when you are older means that you must be able to cook from scratch. Of course I think everyone can cook! And I love to teach and support.

However when if a person isn’t interested or isn’t able to prepare their own meals from scratch, that doesn’t mean they can’t live on their own. Nor does it necessarily mean they need a person to do the cooking for them. It does mean that we need to be more creative.  

Supporting our kids and our elder family members is very much the same at times. This is one.

A quality life with quality health and a community vision – for everyone – at every age and every stage.

Warmly,

joan sig

 

P.S. I do not receive anything from sharing about What’s for Dinner? Or Mom’s Meals™ other than sharing the idea with you. Look for similar businesses in your community if having pre-plated, home-cooked meals is a good solution for you.

Are You Listening? (To the Self-Talk?)

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Are You Listening?  (To the Self-Talk?)

A key element to making successful changes is to listen to the messages you send yourself. Good weight management and health promotion programs will explore the self talk we all do. It’s within those messages that one finds potential barriers to success. Some of us use self talk that is self-talk-iStock 000012936524XSmallreally imaginative. We have super powers! Others are over-confident about what can be accomplished. Still others have very negative self talk.

The messages we want to keep private are often plain to see. How? All I have to do is listen to your word choices when describing a situation. How you describe yourself impacts your child’s self talk, too. It No matter the age, your child learns how to assess their weight, health, even their abilities by how you view your own.

Have you ever listened to a child who is immersed in play with dolls, stuffed animals, or other toys?  You can hear them working out the stressful things that happened in their day. And in listening in,  you learn what sorts of things bother your child. You also hear how they hear what you have to say. That can hurt! As hurtful as it is, you learn a lot about your influence on your child.

Next time your son or daughter with Down syndrome is having a heated discussion with themselves, take a minute to listen. If your child is using words like fat, hog, eating too much, lazy, ugly, and so on, it might be time to make some changes toward more positive self talk as well as positive behavior support (catch them being good is a place to start) for your child.

Coaching is often useful for this. It’s hard to change your child’s self-talk. Often it’s hard to see how to reframe most things. Having a professional partner with you to listen to the self-talk and devise a plan is a good thing.

Listening to the self-talk your child with Down syndrome has can tell you a lot. However, it’s also important to respect privacy. You’ll probably hear all you need by listening to conversations that are happening in the living areas of your home. No need to listen through closed doors. Some things are best left private.

As a side note, it’s also important to listen to the language of the people around your child – most importantly you and the words you choose to describe your child. It’s not “self-talk,” technically. It’s talk about their self. What you say will be translated into the language of what they say. So listen to your self-talk about the person with Down syndrome in your life. Is it respectful? If not, how can you change that?

Listen to the self talk.  What do you hear?