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Courage, Compassion, Connection

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It’s still January.

I still have time.

To do what, you ask?

To choose a theme for the year.

This time last year I shared my focus for 2012 was Connect.

But instead, I disconnected. I survived.

Many of you know the gory details. 2012 was full of regression for our son, Andy from health issues. Each time we thought we had found what he needed, we were teased with a week or so of improvement followed by more regression and pain. It was the opposite of his years as a baby. Instead of two steps forward, one step back, it was one step forward, two steps back. It was a hard year. Those close to us heard some of the details. For the most part, we all regressed, focused inward, and, well, we survived.

Yes, we survived.

I remember sitting in his room at one point, tears streaming down my face saying, “We’ve become a statistic.” (This one: “has trouble accessing care.”)

Those of you walking this path of parenthood with me know that this means that the creative energy to connect, was spent in other, more immediate ways.

Thankfully we found the right person, the right clinic, and the right treatment plan. It’s been a whirlwind of recuperation since October!  We saw something “new” return, almost daily well, into December. My boy is back.

1-17-13

Life is full!

So full, in fact, that I find myself exactly where I was before I fell off a ladder two years ago (and where I thought I was at the start of 2012): creating connections in our community for Andy…and Rex and me.  So connecting is very much in the forefront again.

One thing I could do this past year is a bit of reading. I’ve enjoyed doing some non-academic reading about topics others have researched and share. From that I’ve come to a much clearer vision of the influence of grooves, choice, and weight management for people with Down syndrome and related disabilities. I’ve also come to a much clearer vision that to be on this Wellness Walk for Andy, I must always remember that I am on the path, too. To be successful, for him, and with you, I must have the courage to be vulnerable and learn; the compassion to listen and learn; and as a result, build a meaningful connection.

I tell you all this to help you understand why choosing a theme for this next business year has been tough. Survival mode is very introverted. Andy’s regression and recovery has inspired much mulling and a desire for meaningful connection.   

Having said that, I am borrowing from Brené Brown’s TED Talk for this year’s theme:

Courage   Compassion   Connection

Stay tuned!

Walk? Dance? Dance-Walk?

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Dancing.

Free. Fun. Frivolous.

Have you noticed that most people with Down syndrome have this figured out?  Once again, there seems to be a lesson here for those of us not blessed with a third 21st chromosome.

Learning what people like to do to be active is high on my list. As I listen, categorize things as “fitness” or “activity.” Both are great! I’m looking for ways to increase them.  I’ve yet to talk with a family or support team who does not include dancing on the list.

“Oh yes!  (insert name here) just loves to dance! S/He dances all the time!”

I begun to think about the most popular social events organized for adults with disabilities in communities. Yep, you guessed it, the dance.

And then I remembered that Dennis McGuire of the Adult Down Syndrome Center had some keen observations about the role of dancing in his piece, If People with Down Syndrome Ruled the World.

“If people with Down syndrome ruled the world,

  • You probably would not hear a great deal about exercise, but you may hear a phrase like, ‘Dancing tonight…absolutely.”
  • The President’s Commission on Physical Fitness would recommend dancing at least three times a week.
  • People would be encouraged to get married several times to have more weddings for more music and dancing.
  • Richard Simmons and John Travolta would be national heros.”

One of my Facebook Friends shared this video on her wall. My first thought was, “another silly story.” And, yes, it’s a silly story. Yet I kept thinking the people I know with Down syndrome would love to Dance-Walk. It looks fun, free, frivolous, and active. Take a look:

 

So now, just as I did the first time I read it, I wish people with Down syndrome ruled the world so we could all be free, frivolous, and have some fun as we Dance-Walk our way through the day.

Shall we anyway?

When Food is the Culprit

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Food Allergy.

Food Intolerance.List of types of diets

Food Sensitivity.

No matter the label, it means everyone's unhappy.

Your child's unhappy because his body is always "talking back." You are unhappy because your child is struggling. He might be telling you through his behavior. His body might be telling you through it's reactions (hives, dry skin, gas, diarrhea, constipation, hair loss, and more). He might be feeling so unsettled that he chooses not to eat - but he can't tell you why he's not eating. He loses weight. He gains weight.  And on it goes.

The list of reactions, physical and behavioral, that can be due to a food allergy, intolerance, or sensitivity is endless and random.

What's a parent to do?

Step One: Trust your gut. 

What I mean is parents know when something's up.  I am a big fan of parents' instincts when it comes to kids and health. Our son's toughest experiences are prime examples of  times when Mother knows best.  

Step two:  Be plan-full in your approach.

Too often, when we, as parents, believe we know what's up, we implement the solution before fully understanding the problem. What happens is an immediate issue may be solved, but more may be lurking in the background.  This is almost always true when it comes to food allergies, intolerances, and sensitivities.

When our son, who has Down syndrome, autism, and is nonverbal, had what we termed, "life-limiting diarrhrea" (though he scheduled it well - always between 10:00 and 11:00 in the morning), my research led me to lactose intolerance. I removed all lactose from his diet. Voila! The diarrhea was gone.

Then I read an article about emerging issues in Celiac Disease. Hmmmm.  I read, "Lactose intolerance may be a sign of early stages of Celiac Disease." Great.  We had done a Celiac panel and it had come back negative. So I moved forward, haunted by this article. Two years later, the diarrhea was back. Sure enough, his Celiac panel had changed. We implemented a gluten-free diet, the appropriate treatment, and life has been great ever since.  I don't know that we could have changed the course given the information available at the time, but we could have if it happened today!

The best approach is an evidence and practice-based, systematic approach. This can be a difficult thing to do without some support and coaching. Which leads me to...

Step three: Work with a qualified medical professional using a systematic approach.

This is especially true when tests come back "inconclusive." So what does this mean? It means making a commitment to follow a well-documented approach to discovering food intolerances, sensitivities, and allergies. Not every blood test will reveal what you need to know, though most allergies will be easier to discover.

Food intolerances and sensitivities are more difficult. This is due, in part, to a growing scientific understanding of how our body demonstrates them. For example, a person who is gluten intolerant, rather than having a true allergy to gluten called,  Celiac Disease, will produce "inconclusive" tests when a Celiac panel is done. Yet your "Mommy Radar" is screaming that is the issue!

This is when it's useful to work with a Registered Dietitian who has experience with an elimination diet. Elimination diets are tricky things.  To do it well and get the best results requires commitment. It takes time and planning. It also takes a lot of patience when dealing with your child. Working with a dietitian skilled in this area will help you survive the experience with more hair left on your head. It's still a lot of work, but the dietitian can help guide you and your child through the process as quickly as possible.

The dietitian may or may not choose to use blood work to help define where to start when re-introducing foods. The science around those tests such as ALCAT (1) and LEAP's MRT testing (2),  are in a grey area of acceptance. (3) Used in combination with an elimination diet protocol, however, they can be a useful tool in discovering what your child - or you - are most sensitive to.

I am on the fence about use of the blood work given the scientific controversy. However, the research curve for food intolerance - rather than allergy - is definitely increasing. I expect the landscape to change dramatically over the next five years.  Like many things, the blood tests are expensive and not typically covered by insurance. It doesn't do any harm, other than the trauma of the blood draw and your bank account and it may provide some direction in the process of an elimination diet. In my opinion, these tests must be accompanied by the elimination diet to truly uncover your child's puzzle.

The widely accepted gold standard remains a well-executed elimination diet and reintroduction of foods. It requires the partnership of a qualified health care professional, such as a registered dietitian, and someone who will coach you from beginning to end in a manner that is useful to you and your child. For parents of children with Down syndrome and related disabilities, this means working with an dietitian who understands your child's "health personality" and is able to understand the difference between behavior that is communicating a reaction to food and behavior that is communicating a reaction to something else (a person, an environment, the need to make choices, and the list goes on).

You never know, you may find that your child has no negative effects to food. That's a good thing!

Warmly,

Joan

Want to know more about doing an elimination diet? I'd be happy to talk with you to see if it's something you are interested in working through with me for yourself or your child.
Click here to schedule a 30 minute "Get to Know You" conversation.

Footnotes:

  1. AlCAT Worldwide Cell Science Systems.  (Accessed 11/11/12)
  2. LEAP MRT Testing.(Accessed 11/11/12).
  3. Barrett, S. Allergies: Dubious Diagnosis and Treatment. (Accessed: 11/1//12)

This article is a part of "Write NonFiction November." 

A Treasure Trove

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I found a small treasure. 

When I was studyhing form my Master's Degree, we tried otu a variety of "Web 2.0" tools. It was fun. I found the podcast chanel aI started for one of those classes. I thought you might enjoy them.

"Relationship vs. The Rules" is one of my all time favorites. It's so true.

 Click here to go to the recording here. 

 

Here's the text to

Relationships vs. Rules

alone_on_nantucket

“Loneliness is the only real disability.”

(David Pitonyak)

This is a quote that is used often. Though I’ve credited it to David Pitonyak, even he is not sure who said it first (Judith Snow? Beth Mount?). I imagine that’s because it makes sense, that we all come to this conclusion over time.

I mentioned before that I recently finished reading The Shack by Wm. Paul Young. It left me with many thoughts to ponder and quotes that capture them. Including this one regarding the value of relationship vs. the structure of rules.

“It is true that relationships are whole lot messier than rules, but rules will never give you answers to the deep questions of the heart and they will never love you.”

The Shack, pg 198

These two

quotes together leave me with the following question: If relationships are key to experiencing value and quality lives for people who experience disabilities, why do we continually increase the rules by which they must live to receive our support?

Andy, my son who experiences different disabilities, is 20. He’s in that place where he’s slowly moving into what is considered “adult life.”  Because of earlier decisions, he was able to gain access to Social Security Income and a Medicaid Waiver when he turned 18. He was lucky not to wait.

In theory, this sounds like more help that we’ve ever had. There is assistance to hire people to support him now, so that I might be able to work. What’s the catch?

The rules. The relationships.

Andy lives with us, and I mistakenly thought that we would be able to access his money to hire people we deemed appropriate to follow Andy’s interests to build a quality life and support network.

Silly me.

It seems we must write measurable goals so that folks can show what they’re doing with him. This need for goals and objectives is new. Our early goals for his Individual Support Plan were broad. The goals did cover the important pieces  for Andy to live an acceptable life at home with his parents. It’s not enough to support him to get out in his neighborhood to make friends. We have to know how to do that, how many times a week we he will do this, and what skills he needs support with to do this.

Sounds like an IEP (Individual Education Plan used in school settings) to me. Those haven’t worked too well either.

Aj-On-bridgeFollowing the rules, even if one is written regarding friendships, does not mean he won’t be lonely. True, following the rules means he has a direct support provider – Andy’s not one who will be independent in the community or at home. However, we all know it’s possible to be extremely lonely even with others present. Especially if they are paid to be there.

Rules do not create relationships or friendships. They create structure and walls.

What works best with Andy is to develop a relationship. build activities around relationships. He is more engaged, more independent, and more fun to be around (thus more fun to support) when  he feels he is with a trusted friend.  He is all about the interaction with people who are happy to see him, enjoy spending time with him, and are his friends.

It’s tough to know how to write a measurable goal and objective for  creating and maintaining a relationship – something that’s really not very objective or measurable at all.

Not to mention that fact that all relationships – regardless of who is in them- change with interests and time. It’s natural for things to ebb and flow.

But if Andy’s relationships and interests change, it means a new set of goals and objectives so his medicaid money is spent appropriately.

There must be a better way to build a bridge between safety, fiduciary accountability, and relationship. That includes, of course creating opportunities for natural supports in his life, which is more difficult than it sounds. I’m not sure yet what that bridge will be, but I hope to find it.

In my opinion, rules stifle the ability to create true relationships. So if the rules reign in a person’s life, then disability is more pronounced due to the isolation and loneliness they bring.

I plan to remember this as I continue to support Andy – reducing loneliness is going to have the greatest impact on his life….and mine.