Yesterday was Labor Day here in the United States. Where else was it Labor Day? (teach me!) In Oregon it was a rare, sunny holiday (we have plenty of sunshine this time of year, but holidays are often obscured by clouds. It’s tradition.) This is the weekend my Mother was notorious for having our annual “Fourth of July Picnic.” That tells you something about summer in Oregon. Yesterday, though, was perfect. People headed to the rivers, the beach, the park, anywhere outside to barbeque and relax.
My husband works for the Washington County Sherriff’s Department as a Deputy in the Jail. That means we don’t experience holidays the same way as everyone else. They’re usually “just another day.” Especially now that my oldest has “launched.” Now holidays are must Andy and me.
I was in a holiday mood.
So, we tried some new recipes!
Andy always likes it when I feel like creating in the kitchen. I think he believes the world is right when Mom’s in the kitchen. He especially likes these unplanned, between meal experiments. They’re full of tasting, stirring, mess making, and tasting some more. Add to that, whenever possible, he’s got a job to do! Yesterday was no different.
Corn! Fabulous BBQ Corn!
This first recipe isn’t much of a recipe. There’s so much flexibility. We grabbed what we could from the garden to add. But it was a big hit here at our house!
Foods You Need
- 4 ears of sweet corn
- 2 ripe tomatoes
- 1 large avocado
- Juice from 2 limes (can use 1 ½ ounce of mango or orange juice instead)
- 2 Walla Walla Sweet Onions
- ½ cup chopped cilantro
- 1 ½ tsp chili powder
- 1 sweet pepper (we left this out)
- Olive oil
What You Do
1. Prepare the vegetables.
- Husk the corn and remove “hair.”
- Peel onions.
- Slice whole, ¼ inch thick. (do not separate the rings).
- Dice the tomato.
- Chop cilantro (we tore it apart with our hands).
- Peel and slice the avocado in to chunks.
2. Fill a large pot with water and heat to boil.
3. Light the barbeque. (or pre-heat your George Foreman Grill).
4. Put the corn on the cob in the boiling water. Boil for 2-3 minutes.
5. Remove the corn and drain the water.
6. Lightly brush the onion slices with olive oil.
7. Place the corn on the grill. Turn when kernels begin to brown.
8. Place the onion slices on theGrill until soft.
9. Remove the corn from the cob. (It’s easiest to slice it off with a sharp knife).
10. Slice onion rings in half (to make half circles) and separate.
11. Add to a bowl:
- Corn removed from the cob.
- Avocado slices
- Sweet Pepper
12. Add half the chili powder.
14. Pour in (lime, mango, orange) juice.
16. Chill for 2 hours.
Serve with crackers or chips as a relish or as a side dish salad.
Andy proclaimed this fantastic. He liked it best with Corn Chips (not Fritos). I liked them with Sweet Potato Corn Chips best. We tried them with pretzels, too (see photo).
Best part? Watching Andy practice eating both the chip and the relish on top in one bite!
Any “people watchers” out there?
I admit it. I am one. I love people watching. It’s a great way to fill time when waiting. It is also the foundation of an important skill that I call “joining.”
People watching has taught me that it is often harder to “join” that it is to “be joined.” I am certain there is a professional term for this, but I like mine. It's easy to understand that I'm talking about the creating a group or shared experience. Recognizing the difference between joining and being joined is key to success when working with people with intellectual and developmental disabilities. Let me explain.
Joining is the act of going over to be with someone else. It is something that we do. An action we take. For some, the process of joining others is easy. “Joiners” are confident they will be accepted by the group or person. They don't need an invitation. Joining another person or a group is brave.
Students in special education are presumed to be “joiners.” The assumption is that they will want to do any activity, join any people, or groups we suggest. There's no fear. "Look, there are some kids your age over there - go join them. Yet in observing students in this situation for years, I am convinced that joining causes more stress for many than watching from afar.
When my son, Andy, was in second grade, I negotiated a transition from a self-contained classroom to a general education setting. During that transition, Andy’s teacher recommended he begin his time in the general education classroom at center time. Andy, like me, is not a joiner. He is cautious about new situations and new people. He is slow to trust.
Andy would arrive with an assistant. They would be expected to join a group of children at a center and become a part of that group. He had never met these children before. Yet they had been in class together for 6 months. They knew each other well. After a few unsuccessful attempts to have him join other students in different centers, the teacher was concerned. She felt he was not ready for general education solely because he had trouble joining a group of strangers.
Andy's not a "joiner."
"Being joined" is the opposite. Usually people who are shy, or not as confident, prefer to be joined by others. That means, they welcome the company, but they prefer peole come to them. Especially in new situations or with people they don't know. Someone who prefers to be joined will hesitate and push back if you ask them to join others. They prefer an invitation or are happy to watch over approaching a group. Joining a group is very stressful.
This is how Andy prefers to become involved in new groups. He does best when people come to him and share in his activity. In other words, he enjoys others joining him. He likes being the host, if you will.
Let's go back to the transition I described above. When the teacher expressed her concerns about Andy joining in at center time, I suggested Andy begin where he does best: circle time. Not only that, but at the edge of the circle rather than in the front. Our goal was not for Andy to learn the content, but for him to successfully join the group. If he needed to escape the situation, I didn't want him to plow over the top of the other students!
Here's what happened.
Andy arrived before the students were ready for circle. He understood circle time. He knew what those carpet square were all about. He headed straight for his carpet square and sat in the circle area when he arrived, waiting for the teacher to get with the program. He smiled and greeted all the students as the came to begin the time together. Everyone was thrilled with the difference in attitude from Andy with this change. In fact, once he was joined by his classmates, he did not like to leave the room. He went eagerly into the next activity: center time. The next report from the teacher - who admited she didn't think Andy would be successful - was that Andy was spending more of his time in that classroom than the special ed classroom. He was happy. He made friends. The teacher became a believer.
For people like Andy, the skill to develop is the process of joining another person in their space. The goal is to find a shared space that elicits joint attention and then move into a new activity. That is what circle time did for Andy. He went to his designated “spot” where he understood the rules (“I sit here. This is my space. No one will push me or crowd me on my carpet square.”). He was ready to start circle time. When the other students came to the circle, they joined him for an activity he enjoyed. He was "being joined." Once they shared that experience, he felt comfortable enough to do more with his classmates.
I look for this when I watch people. You can feel the stress of the person who is pushed to "join" when he prefers to "be joined." At the same time, people who are happy to approach groups, to do the joining, are comfortable either way.
I find this to be a powerful tool when working with anyone – regardless of ability. Here are a few ways to join someone and establish a shared space.
- Watch. Take a few minutes to learn what they are doing. Watch their eyes and try to feel their emotion. What are they looking at? What is capturing their attention?
- Approach from the side. When you join, stand shoulder-to-shoulder and look in the same direction.
- Talk about what you believe the person is interested in. Notice what they notice.
- Slowly and gently, begin to change your position so that you are in their gaze. Once you are in this position, you can begin to shape the conversation slowly and gently to the topic or activity you would like to do together.
- Accept rejection quickly and gracefully. If the person does not want to be joined, do not push your presence on them. Step away, give them space, and attempt again after a good rest. Sometimes it takes a few attempts to join in someone’s space.
Coaching someone in their quest to reach new goals is definitely something to do in a shared space. Working together in a safe environment is especially key when working with people who experience intellectual and developmental disabilities.
“Submission is not about authority and it is not obedience;
it is all about relationships of love and respect."
The Shack, by Wm. Paul Young
“Submit” “Comply” “Submissiveness” “Compliance”
There are a few words more hotly debated. These words, which are synonyms, represent a belief, or attitude, usually about a relationship. They are used when discussing marriages and when discussing support for another person – with and without disabilities. “Compliance” is a frequent term used regarding students receiving special education services and for adults in the disability service system.
When I read or hear them, my thoughts immediately go to the word, “control.”
I most often hear the notion of submissiveness or being asked to submit used in religious circles when discussing the roles of partners in a relationship or marriage. 25 years ago when I was getting ready to marry, it was a topic of one of our marriage counseling sessions required by our church. I don’t remember much about the session except that my girlfriends and I were too independent to fit the “submissive wife” model we believed was in question. In some circles, I am considered a rebel for not being “submissive.”
“Compliance,” on the other hand is something I hear repeatedly – from teachers, direct support providers, health care professionals, program managers, case managers, and policy makers – when discussing people with disabilities. Many classrooms use compliance-based tactics to obtain “good behavior.” Many people who provide support to others consider it a good day when the person they are working with was “compliant” and followed all commands. But I don’t want my son, or the people I support to be “compliant.” I’d like to hear what they have to say! Once again, I am considered a rebel in some circles.
Let’s look at the words: Webster’s Online Thesaurus offers this about being submissive: “readily giving in to the command or authority of another.” Words with the same meaning (synonym) include compliant.
That does not sound like a relationship I want. I am not a rebel. I just believe in respect. It seems to me that if I care about the person I am in a relationship with (as a wife or friend), I would never ask them to do anything that felt submissive. It’s true we sometimes do things or allow choices that we aren’t fond of in a relationship, but if we care about the other person, we do not ask them to “submit” if they feel oppressed.
Now let’s look at the word, “Compliance: a readiness or willingness to yield to the wishes of others.” Words with the same meaning include submissive.
Hmm. Now if it said “yield to the wishes of your Mother,” I might go for it. But it doesn’t. To be “compliant,” means a person yields to the wishes of others. If compliance is your goal, then your goal is for the person you are working with to yield to the wishes of others, rather than their own, always. That’s certainly not a concept I think of when I think of a quality life or self-determination!
To me, the belief system using these words is a power dynamic. One person in the relationship holds the power of the other person. I don’t want to dive into what this means for a marriage or other intimate relationships. But since there is a great deal of polarizing discussion about submissiveness with regard to marriage, it seems important to illuminated the similarity between that debate and the debate around “compliance” for children and adults with disabilities.
I’ve always believed that if I truly care about the other person in the relationship, I won’t ask them to submit or comply. Asking someone to submit or comply so that I can have the power in the relationship hardly seems respectful. Since I want respect from those I spend time with, both in and out of work, it makes sense I should offer them respect, too
The skill for a successful relationship is in the ability to communicate, collaborate, and compromise.
I have just finished reading The Shack by Wm. Paul Young. It is a very abstract view of religion, clearly from the Christian point-of-view. The focus of the message, however, is on relationships, respect, and forgiveness. I’ve found many thought-provoking passages, including this one:
“Submission is not about authority and it is not obedience;
it is all about relationships of love and respect."
When I read it, I thought, “what if I used the word, ‘compliance’ instead?” A few minutes later, I found that compliance is a synonym (has the same meaning) of submissive. Bingo.
Compliance “is not about authority and it is not obedience;
it is all about relationships of love and respect."
This really works for me. You see, if I respect the person I am supporting by listening to them, listening and acting on what they like and do not like, then it is more likely they will choose to collaborate with me in things that we do.
Generally when I’m sitting in a meeting about Andy or listening to support folks talk about working with someone, I doesn’t sound like this is the definition they are using for “compliance.” Usually they mean, they want someone to do what they tell them. They want the power to tell the other person what to do.
I propose we take this one step further:
Providing support “is not about authority and it is not obedience;
it is all about relationships of love and respect.”
This is my definition of support for a person with disabilities. It works very well for me. It is a definition that, when the tables are turned in my elder years, will allow me to feel good about myself. I suspect it is what Andy – and all people with disabilities – want in their life.
I am currently watching this play out in our home this summer. M provides support to my son Andy. She's worked with him before. They are very fond of each other. M respects Andy's communication style. She listens intently and let's him know what she hears. In one week they've gone on all sorts of adventures - more than I would have imagined - and today he started using the communication system others have avoided making available. He does what she asks, albeit in his own good time, and respects her in return. It has been a joy to watch.
What will it take for this to be your definition of supporting someone?
It's always best to begin at the beginning.
In my last post I shared the story of Andy’s entrance to the world of Celiac Disease and a fact sheet about Celiac Disease in Down syndrome. Now it’s time to talk about the treatment: a gluten-free diet.
There have been times in my life as Andy’s mother that the irony of a situation is bigger than the problem itself. This was one of them. The treatment for celiac disease is a gluten-free diet. Since my early days as a dietitian, this was in my top three dreaded diet instructions. I wasn’t looking forward to this journey.
As you read this, keep in mind, this information is about people with Down syndrome who have Celiac disease.
Gluten is found in wheat, barley, and rye. Until recently, it was believed oats were also a culprit. Turns out oats are gluten free, if they are grown and milled following specific guidelines. Always use certified gluten free oats.
Gluten seems to be everywhere at first – until you learn what to look for and where and how to shop. The truth is, if you’re new to this, you have more urgent things to think about, such as, “What will we eat tonight?”
My approach is to recognize it will take some time to learn how to eat gluten-free and break it into easy steps.
Step One: Getting Started
This is a very short-sighted plan. Not one to use for more than a week. But it does give you that quick start. The foods are likely not ones you will use on a regular basis. They are, however, easy-to-use. The steps are ways to be gluten-free quick. Keep that in mind.
- Go to the Gluten Intolerance Group website. Print the basic information about the gluten-free diet: (http://www.gluten.net/diet.html). I found a membership very helpful.
- On that same web site, print the Quick Start Diet Guide for Celiac Disease. (http://www.gluten.net/downloads/infopackets/QuickStartDietGuide-2005.pdf)
- Make a list of the foods you know your child absolutely cannot do with out. The survival foods.
- If you have these in the house, put a package on the counter and begin comparing the ingredients with the lists of foods and ingredients with gluten. Put aside the gluten-free foods. Get rid of the foods your child loves, but contain gluten. It’s easiest to remove things from the house at first.
- Create a menu for the next three days based on what you just learned about what your child eats. If foods are very limited, make a list of foods your child will eat that you can use as calorie fillers such as applesauce, popcorn, or even corn chips.
- Start a notebook to keep lists of the new foods you will discover and where you bought them.
- Set aside a shelf in the refrigerator and the pantry specifically for food your child can eat. Remind everyone not to eat these foods for now. They are for the person who has celiac disease.
- Tip: Find a store that carries Udi’s Bread. Most Whole Foods stores carry it. Pick up a loaf of whatever “color” of bread you’ve been using (white or brown). They also make good hamburger buns and a good quick pizza crust.
- While you’re at that store, look to see if they carry Living Without Magazine. It’s one of the best for recipes, ads, and has a handy quick start list in the back.
Once you have a three-day menu planned, you can start researching the many foods available for people eating a gluten-free diet that will meet your family’s needs.
For these first three days, do not worry about perfect nutrition. The most important thing you can do for your child’s health is focus on eliminating the gluten your child eats.
Go on a Shopping Expedition.
Your goal is discover what each store has in stock that fits your needs. Take your notebook and write down what you learn. Stop at the food manager’s desk and ask if they have a list of gluten-free foods available – this is a very helpful thing to do. More and more stores have a list available. Some stores are better than others, but many are increasing the number of gluten-free foods they carry. And not all gluten-free foods are specialty items. Some grocery chains are more interested in carrying gluten-free foods such as Whole Foods Markets, Wild Oats, and Trader Joes. Look for Amy’s Frozen Foods. The Amy’s frozen food line has a number of good dishes without gluten in them, including cheese pizza, spinach and cheese pizza, macaroni and cheese, burritos, baked ziti, and more. Entrées without gluten are clearly and proudly marked on the front for consumers.
One of the mysteries you will need to solve in your local stores is whether the specialty foods are mixed in with similar items (for example, rice pasta on the shelf next to semolina pasta) or if they are in a special are of the store such as the “nutrition section.” Make a list of the foods you find in the different stores. It gets confusing.
When we started on this journey being gluten free was not yet the trend it is today. I literally kept a small notebook I could stash in my purse with reminders of what things I could buy at what store. I shopped four different stores just to get the foods we needed for home and school. My favorite was a not-so-local market that is completely gluten free, Lingonberries Market. Hank, the owner, would find all the really cool, often local, bakers and products. It always felt like Christmas when I visited Hank.
Shop the Internet
If you’re overwhelmed in the store, never fear. There’s always internet shopping! The following are a few of my favorites:
- §“Joan Recommends.” http://downsyndromenutrition.com/astore.html This is actually an Amazon affiliate store. On the right you will find a link to gluten-free foods. I “collect” products that are available on Amazon that our family likes. It’s not about the “affiliate fee.” It is the easiest way to gather those links for you so you can find things.
- §Kinnikinnick Foods. www.kinnikinnick.com (the worst part is the spelling!)
- §The Gluten-Free Pantry. www.glutenfree.com
- §Gluten Solutions. www.glutensolutions.com
- §Bob’s Red Mill. http://www.bobsredmill.com/
- §Tom Sawyer Gluten Free Flour. www.glutenfreeflour.com
- §Minimus.biz. www.minimus.biz/ . This is a really fun site. They sell individual packets of a wide range of products. However, they also carry gluten-free individual packets of tandori soy sauce, and other gluten free items. Just search “gluten free.” These individual serving packets are good to have when packing lunches.
A Gluten-Free Home
Families and even experts disagree on whether or not the entire family should eat gluten-free when one member has celiac disease. It is a decision on you can make. If you choose not to have a gluten-free home, you will need to purchase kitchen equipment solely for the person who is eating gluten-free. For example, a separate toaster, frying pan, or grill. Cross-contamination is an issue to take seriously.
We have created a generally gluten-free home. This was easier for us because our older son had left for college when we started the diet. We have found foods that we like and little has changed, except baking our weekly loaf of challah, one of Andy’s favorite activities. In the long run, this has been an easy way for us to ensure Andy is eating gluten free.
Remember, you’re just getting started. Resist as you might – and I did – it’s a good idea to work with a menu for a while. It actually became comforting to me to know that most of what we eat is gluten free! Meat, legumes, vegetables, fruits, milk, cheese. All gluten free before we alter them. The easiest thing to do is to make those menus pretty plain for a bit. Add in new adventures when you’re ready for them. Have a tasting party! YOU can keep track of the foods you try in My Tasting Journal!
Truth be told, I sort of like the adventure of new foods these days. I am notorious for bringing home foods from a new bakery or product line I find just to try them. I love going to the GIT Gluten Free Food Fair once a year. The local group just had one last week. I found the greatest hand-made, gluten-free frozen pies. Check her out at http://queenofheartspdx.com/ I had the closest thing to chicken pot pie that I’ve had since Andy was diagnosed with Celiac disease….and it was heaven.
This is by no means comprehensive. It’s meant to give anyone who is new to Celiac disease a method to get started with the treatment.
Case, S. The Gluten-Free Diet: A Comprehensive Resource Guide. Case Nutrition Consulting, 2008.
McGuire, D. Chicoine, B. Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges. Woodbine House, 2006.
Medlen, J. The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles. Phronesis Publishing, 2006.