Tuesday, June 2, 2009

HEAV article...Homeschooling with Chronically Ill Children

You can simply avoid this post if you don't want to read a really long one. :) I submitted this tonight...If you guys have any thoughts on it, I'd welcome them. It should appear in the fall issue of the HEAV Educator Magazine...The magazine will have a nice little box of how to's, but this is the accompanying article. Comments welcome! :)

Homeschooling with a Chronically Ill Child
Nancy Coleman

Most people don’t realize that when a child is diagnosed with a chronic illness, the family is diagnosed with the chronic illness. No one escapes. When our son was diagnosed, the doctor informed us that 70% of the marriages in his practice end in divorce, and the teen pregnancy rate is significantly higher than the national average. I was shocked and pridefully believed that this illness would not affect my family that way.

Homeschooling is challenging. Homeschooling with a chronically ill child defies description. The time, energy, and financial resources dedicated to the management of the illness can be staggering. We have not only the normal, every day challenges of cleaning, laundry, grocery shopping, and child training, but we also have the added challenge of doctor appointments and medical crisis. In the first four months of this year, I drove 5,600 miles to 52 doctor appointments in Richmond (49 miles one way) as well as out of state. The constant physical, financial, and emotional strain takes a toll.

When people ask how they can help, I generally have this “deer in the headlights” look because I just don’t know how to answer. The list is huge; the needs are great. But I‘m not sure I want to burden someone else with my load. Before my son was ill, I would read through those “how to help” articles and think, “Got it: make dinner, pray, occasionally help with a daily chore.” My goal here is to help you understand why that list exists, and then give you some real, practical ideas on how to come alongside these families.

Encourage us
Every “how to help” list suggests sending a card. Now I understand why. I can put a card on my desk and simply see it sitting there to remember that someone out there is praying for my family and loving me even when I have no time to return a phone call or an e-mail. It is a tangible reminder that I am not alone. E-mail is great, but I don’t see that e-mail when I walk past my desk.

Job lost his entire family and all of his material possessions. His friends came by and sat with him for a week and said nothing at all. They just sat with him. You have no idea how much it means to someone grieving (and we do grieve over the health of our children), to let them know that they are not alone. Pray for the family, and then drop them a note that tells them you prayed for them. It is a huge encouragement to be able to gaze at the card on the shelf. It is a reminder that we are loved not only by our friends, but by our Heavenly Father.

Remind us
Remind the family of what is true. We often hear, “God won’t give you more than you can handle” or “God doesn’t make mistakes.” We know that God is sovereign and that He has a plan that we just don’t understand. We need to be reminded that God loves us and our children and that even in this God is showing Himself to be faithful. He has not abandoned us. Send a scripture verse with a note that explains why that Scripture is important to you.

Come alongside us
Help us avoid our isolation. Doctor’s offices and hospitals are lonely places, especially when we are out of town. At home, the needs are so great that we just keep plodding forward. There is no time to do anything else. We would love to go out for coffee or visit for an afternoon, but school and housework are already incomplete. How do we afford the time?

If you would like to visit, suggest working on a job together. That bathroom that is half painted can be finished in an afternoon with a friend. Not only do we get to see a friend, but we get to complete a task that never leaves the list. We need human contact and friends, but sometimes we just don’t see how it fits. There are always jobs that two can do… weed a flower bed or bring your ironing over and work together while you chat. If you simply want to visit, offer to come over for an hour and bring a snack to share. It is a manageable amount of time for both, and removes the panic of “how to be hospitable.”

Include our children
Homeschooling brings monumental pressure. Older children are better able to manage because they can work independently. My younger children are a whole different ballgame. We have a family friend who volunteered a couple of days a week to keep my younger children moving forward academically. We would have lost almost this entire school year if not for Erlene.

Another family invited my older children to their home for a science and world geography class. We were able to keep that one afternoon a week available for that class, and my older children were able to see their friends and complete two classes that I did not have to manage at all. Not only would my children not have seen their friends, but those classes would never have happened this year if not for this family.

The child that is ill gets the vast majority of attention. He also gets to escape household chores because he is either ill or at a doctor’s office. The other children therefore, carry not only a heavier load, but they do so with less supervision and attention. They are just as isolated as I am. Consider including them when your family does something fun like going for ice cream or visiting a museum. If your child is playing a team sport, consider asking if you can transport a child. My children would love to play team sports or take ballet, but I simply don’t know how to make it happen.

Pray for us
70% of the marriages with chronically ill children end in divorce. I really thought Dr. Grubb was exaggerating. The marriage is the foundation of the family. But when the family is assaulted by a chronic illness, the strain on the marriage is truly unbelievable.

I am utterly swamped trying to keep up with daily life as well as understanding all of my son’s diagnoses, medications, and how he feels each day―because any change in the morning could have consequences for the afternoon. He has multiple issues and two of them are rare and little understood.

My husband is utterly swamped at work and feeling the pressure of excelling at his own job performance while still maintaining a relationship with me and the children. Changing jobs takes on a whole new perspective when you have to consider the health insurance issue and whether or not our son would be insured by a different company.

Add in financial pressures from medical expenses and just the driving (36,000 miles per year and traveling to out of state physicians), and the marriage struggles. Time is what we don’t have but what we need to nurture the relationship. How marriages survive without Christ is truly an enigma to me. Please pray for us.


Caty C. Winyard said...

I really like your article!! =D For those who want to get but only see the "deer in the headlights" look, I think this article answers their question.

Always thinking, praying, and loving you so very much!!!
Caty =)

Maria S said...

Loved the article Nancy. Very down to earth, honest, and helpful for friends wanting to help and/or just understand the complexities. Many blessings!

Anonymous said...

So glad to see this article. We are planning on homeschooling in the fall - we have 5 kids, one with Trisomy 18, which is usually considered palliative, very medically fragile and complicated, wheelchair bound, tube fed, etc etc... she is 5 yrs old, and 4 healthy boys ages 1, 3, 8, 11.... no idea how the first yr of HS-ing will go... trusting the Lord, since I believe this was him leading us here.... God bless ~Annie p a r o m p f @ shaw ca