Tuesday, June 24, 2014

Homeschooling a Child with Chronic Illness -Part I

Homeschooling a Child with Chronic Illness

Part I: What a Chronic Illness Looks Like in Daily Life.

Chronic illness is a sneaky thing.  You can live with it never realizing that it's in your life.  That is a good description of what happened to our family in regards to Amber's severe fructose malabsorption.   We knew she had been very sick and until her diagnosis we were daily terrified to see the deterioration of our child.  But after a diagnosis that relates everything back to food?  Well, we just fix the food issues, even if they limit her diet extensively, and let her move on with life. Right?  It's not like this is a disease that requires maintenance medication, or special treatments.

Learning to acknowledge Amber's condition for what it truly is, a chronic illness, was our first step toward altering our life to better fit with Amber's needs.  No matter how much we want to mentally minimize the effects of the fructose malabsorption, it still invades almost every facet of our lives.

Amber is always teetering on exhaustion.  Always.  She is finally out of the malnutritioned stage that resulted from the 10 months of uncontrolled illness.  Still, she has only minimal energy to expend over the requirements for daily life.  One exciting day can (and usually does) leave her exhausted, pale, and sickly for two days following. We have to balance after school activities, family events, fun gatherings with friends, homeschool group outings, general exercise, and doctor's appointments to ensure Amber can function most days.  One poor night's sleep throws a wrench into all of our plans.  One change in the schedule can mean we have to drop out of a planned event. 

We also have to ensure there is plenty of time for Amber to sleep.  At her sickest point, Amber was sleeping 15 hours a day so that her body could conserve energy and remain functioning.  It was scary.  She's now down to a manageable 10-12 hours a night, depending on the previous day's activities.  Those are not just guideline times.  She must sleep at least 10 hours or she will be physically sick before mid-afternoon.  We can watch her start to fall into exhaustion and illness before our eyes.

The fructose malabsorption has such a limiting diet that even with the regular consultation and care from a dietician, the child is barely getting enough from her food and supplements to heal and continue growth.  This is a side effect that we did not initially anticipate.  Honestly, we thought Amber would heal up from the damage done and then move on.  The healing is taking an excruciating amount of time and as long as she is a growing child her body will barely be able to keep up with its needs.  At least she is a growing child again though.  That had stopped for a while too.

The actual diagnosis for Amber is fructose malabsorption, however through food trials and working with the dietician we have found that Amber is not tolerating a great many foods that only tangentially relate to FM.  Pretty much all FODMAP foods are not tolerated by Amber. And I don't mean she gets a little gassy or feels a somewhat uncomfortable.  They trigger reactions which include duodenitis and severe pain, severe constipation (or the opposite), brain fog because the inflamed intestines aren't producing needed brain chemicals, and general malaise because her intestines aren't absorbing nutrients.  Her level of tolerance does not include food containing any amount of free-fructose (not bound to equal amounts of glucose) or foods with more than a few grams of fructose bound to glucose.

Homeschooling a Child with Chronic Illness
McDonald's French Fries cause only a very small reaction, which means she can eat them once a week
The food issues greatly limit Amber's life.  Think about how often food is a part of our social lives.  Amber can't spend the night at a friend's house without preparations for what she will eat.  I have to provide all the food.  She can't participate in church youth group functions like the one this week where they will be walking to the nearby ice cream shop.  Well, I guess she could, but it would tire her out and she'd not be able to eat anything once there.   When she volunteers, like at VBS this week, she has to take her own snack and hope she has the energy for a full week. At events where a meal will be served we have to make arrangements for a meal for Amber, that of course I will  provide.  Sometimes it is simply easier to eat ahead of time and watch the others eat during the event.  Even family gatherings are complicated when she tries to explain to her younger cousins why she can't eat what they eat.

Amber has started confirmation at church, but will not be able to participate in the confirmation weekend retreat they have each Fall.  Besides needing days worth of food, the retreat centers around a location with high ropes courses and other physical bonding events.  The amount of sleep Amber requires for such activities alone would make it impossible for her to attend.

Then every time we have a handle on life, it's time to try a new food in the hopes of broadening Amber's tolerated food list.  It stressful on us both knowing that once Amber feels good I'm going to turn around and make her sick with a food trial.  There are days that she begs to skip her trials because she is feeling so much better. 

I won't even detail out what the food issues have done to Amber's sensory processing disorder. Let's just say some days contain battles we thought were in the past.  Oh and the medication and special treatments?  It might be tmi, but even on a good day without the over-the-counter medication prescribed by Amber's GI doctor her bowels do not function properly. 

Now, given all of this you can probably begin to picture what daily life here is like.  If we planned to live in our own little bubble inside our house, then everything would be perfect.  However, Amber likes to be out and about like a normal twelve year old.  She likes to socialize with friends, participate in group activities, volunteer, and work off the sensory "exuberance", as she calls it.  

In addition to trying to give Amber the life of a normal tween girl, let's try to fit homeschooling into this mix, but instead of entirely reworking how school looks let's be the parents who have yet to realize what the FM diagnosis truly means (that would be us).   I actually thought it would be beneficial to continue school as much as before as possible.  You know, not change it up too much with all the other upheaval in Amber's life.  She can, at times, react very poorly to change. And to be honest, I didn't want to give up our lovely classical education style.   Little by little I would make a few modifications to our school simply because we could not function at all in our previous mode.  They really weren't well thought out changes, but acts of desperation to get us through the next day with some amount of school completed. 

Homeschooling a Child with Chronic Illness
After a homeschool field trip. She crashed for the rest of the day.
In the end our (er... my) inability to see the truth of the situation resulted in all of us finding school to be a drudgery and trying to avoid it as much as possible.  Some days it felt like I was almost forcing Amber to complete anything school related.  There were some pretty creative excuses as to why school couldn't happen on some days.  Many days school did not happen because Amber was sick from a food trial.  It's hard to get any learning done when the student is in a brain fog, experiencing duodenitis pain, and having an overall sick day.

Even when we worked on school, we felt behind because Amber had sick days every week and our schedule did not account for Amber needing so much sleep.  Yes, I knew she needed sleep, but we were still operating on our original schedule and just starting "late" each day.  At some point you need to realize that it isn't late when your child can't wake any earlier.

Amber did not learn half as much as she could have if our the realization of how the FM would affect all aspects of life had come earlier.

Now that we have acknowledged and accepted the truth about Amber's health it is time to make real adjustments to school.

Coming Next:

Part II: School Needs for Chronic Illness


  1. This is not your generic, run of the mill food allery that you have described here! This is a very informative description for people who just don't understand the severity of Amber's illness. You guys definitely live with a lot of stress and poor Amber has suffered through it all like a brave little trooper. Your devotion to helping Amber get better is very inspiring. Thanks for sharing this very honest peak into your lives. I do so hope that soon Amber will be healed. You guys are such an encouragement to me!

  2. This really shows the whole picture. Reading the weekly posts gave me a jigsaw view of what she and you were dealing with. While that was bad and I understood the stress and concerns you were going through this post assembles it into a complete picture. As always I will keep everyone in my prayers.