Homeschooling Chronically Ill Children

[harmonyartmom]

I am just back from a medical symposium dealing with the rare genetic disorder that my children have. So many of the families at the symposium homeschool their children.

 

I was just wondering how many of you homeschool your chronically ill children? Did you start homeschooling because of the illness or did you begin for other reasons?

 

I would love to hear from other parents of chronically ill children that post on this board.

 

If you are curious, my boys all have Alagille Syndrome which for them involves mostly their liver. It is a genetic disorder that only recently has been diagnosed. I had no knowledge of it until four years ago.

 

Barb-Harmony Art Mom

[nakitty]

Not chronically ill...but one very big reason I homeschool is that a couple of mine have ADHD... It makes complete sense to me that many would choose to HS their ill child(ren)...the amount of school they would have to miss due to their illness would not be conducive to learning...nor would it be easy to deal with the school over attendance issues.

[Mere2]

My DS is only 4, so I am not quite hs him yet. However he has a rare muscle disease - future unknown. I doubt by the time he hits high school that he will have the energy to go to school full time or do a full days hs work at home. Something I have been thinking about for awhile now.......what do you do when they cant do a full days work:confused: Why should his brain and personality miss out on an education just because his muscles dont work properly?. (OK ignore the fact that the brain is a muscle:tongue_smilie:)

 

So sorry no help - but I am right behind you in this difficult road that we tread.

 

Cheers

Fi

 

Sorry reread your post again. I have started hs my oldest (DD 6) for one of the reasons being that her younger brother has a rare disease. I need the flexibility of being able to schedule medical appointments and not fit in with school pick up times etc, and most importantly I want my children to KNOW each other, to have good fun memories of each other before/ if things degenerate quickly. So they have memories to look back upon and laugh over when things are tough. (Not saying that this cant happen if they went to school, its just that their is more time for this to happen if they are together all day, everyday.)

[G5052]

I think that it's a very good way of managing life along with chronic illness. The local school system offers "at home" teachers who come once a week, but several have told me that homeschooling works better all around. One family has a child with very complex, life-threatening food allergies, and I can't imagine sending a child off to school where there's far less supervision of those issues.

 

My husband is chronically ill for some time now, and continuing to homeschool has been a huge plus for us because we've all been involved in his care, with the last four years being especially difficult. A counsellor we were seeing as a family once told me that she wished that more people with chronic illness homeschooled because in her experience families that go all different directions have a harder time dealing with the issues as a family versus becoming isolated as individuals.

[TraceyS/FL]

When we started Homeschooling we had no idea our middle DD had anything wrong with her, it's been a HUGE blessing to already be on the homeschooling path because of it.

 

She also has a genetic disorder - Tuner Syndrome - thankfully at this point she has no signs of the kidney or heart problems that go with it. She's basically short and then has EVERY learning issue she could have apparently. UGH.

 

But anyway, it's been a huge blessing for our family to be on this path.

[TravelingChris]

We started homeschooling with our oldest and he never had any illness issues while being homeschooled. Our next two did. The youngest was sick during her first grade- he got what later turned out to be reactive arthritis but we couldn't know at the time whether it would resolve or not. Last year, my middle's ninth grade year, she spent most of the year sick with devastating non-stop headache and some other problems. While she is still working on ninth grade now in July, the complete year wasn't lost like it would have been if she was going to school. I am very thankful I can homeschool her because although her headache has finally resolved, other indications tell me that her headache may have been part of a greater problem like something rheumatological.

 

I know a few families with severe allergies and one with a diabetic that find it easier to homeschool than deal with schools.

[Cathy in IL]

I had started homeschooling my oldest when I adopted my ds. My son has sickle cell disease, asthma, food allergies, moyamoya syndrome, and chiari 1 malformation. His health changes quickly and unpredictably. He has been hospitalized many times. Since they removed his spleen when he was 2, he catches things even more easily. His food allergies alone would make school difficult. I didn't start because of his health, but it is the best option for him on so many levels.

[JudoMom]

I am just back from a medical symposium dealing with the rare genetic disorder that my children have. So many of the families at the symposium homeschool their children.

 

I was just wondering how many of you homeschool your chronically ill children? Did you start homeschooling because of the illness or did you begin for other reasons?

 

I would love to hear from other parents of chronically ill children that post on this board.

 

If you are curious, my boys all have Alagille Syndrome which for them involves mostly their liver. It is a genetic disorder that only recently has been diagnosed. I had no knowledge of it until four years ago.

 

Barb-Harmony Art Mom

 

My ds6 has arthritis and is neutropenic (which involves low blood counts). We've always planned to homeschool (he started with symptoms when he was 2, which was my oldest son's K year) but I definitely see the benefits for him. He has at least 1 doctor's appointment a month. On the days when he's in pain he doesn't have to sit still in a hard chair all day, and if he's lethargic he can rest. We don't have to worry how he'll handle a change in medication, because if it doesn't go well he's home anyway. While his neutropenia doesn't seem to affect his ability to fight off infections, I'm glad he's not trapped in a germ factory for several hours a day.

[Ellie]

My DS is only 4, so I am not quite hs him yet. However he has a rare muscle disease - future unknown. I doubt by the time he hits high school that he will have the energy to go to school full time or do a full days hs work at home. Something I have been thinking about for awhile now.......what do you do when they cant do a full days work:confused: Why should his brain and personality miss out on an education just because his muscles dont work properly?. (OK ignore the fact that the brain is a muscle:tongue_smilie:)

 

I believe with all my heart that for homeschoolers, there's no such thing as a "full day's hs work at home." There is only learning. You help your dc learn as much as he can each day, however much that is. There are no rules.

[enigma]

We decided to homeschool when our son was an infant, because of chronic illness. When the time came, I was so exhausted from dealing with the medical side of things, we decided to try public school. He did homebound kindergarten, then went into the classroom for 1st grade. That was a negative experience on so many levels, including the fact that he was only able to attend school for one day the entire month of February. He was in the hospital with pneumonia, then influenza A. (His immune system runs a quart low.) So now we homeschool, and he stays much healthier. His diagnosis is 22Q Deletion Syndrome, sometimes called Velo-Cardio-Facial Syndrome, or DiGeorge Syndrome. The curious may check out http://www.22Q.org or http://www.vcfsef.org .

[harmonyartmom]

When we started homeschooling it was not because of the health issues....we didn't even have a diagnosis at that time. My boys, although very active at times, had great periods of chronic tiredness. My youngest itched his arms and legs until they bled.

 

I was told they had allergies but after extensive testing, they couldn't tell me what they were allergic to. We did elimination diets and tried everything we could think of but nothing seemed to help. We went to doctor after doctor and spent loads of money (sometimes more than we had) trying to figure their symptoms out.

 

My youngest has relentless itching and he was told he had eczema and he was treated for that but it didn't help one bit. The two boys could hardly sleep a full night because of their symptoms, mom didn't get much sleep in the early days either.

 

As the years passed, they were misdiagnosed many times....once they were even diagnosed with lead poisoning which later we found out was probably an undiagnosed case of rickets.

 

I think the best part about homeschooling my chronically ill children is that we are so bonded. We have been to every doctor's appointment together, we have supported whoever wasn't feeling well on a particular day, and we were able to adjust school to fit our needs. We live a distance from the nearest specialist so "car school" has always been a necessity.

 

Our family's illness is so rare that we don't know anyone in our every day life that even has an idea of what they boys have. I call it the invisible illness because they rarely are sick outwardly to bring any attention to themselves so most people forget, including family, that they are really messed up on the inside.

 

We live in California and the boys' specialist (hero) is in Philadelphia so you can imagine how difficult that is. Our local family doctor is fantastic but he does not have much knowledge of what the boys have wrong with them. It is a complicated disease. Email has saved our sanity.

 

Anyway, thanks to all the moms that replied. I read every response and I appreciate the warmth and support. I know that taking care of a sick child can be draining but it also can be very rewarding. My husband thanks me everyday for staying home and homeschooling our children. I thank him everyday for making it possible. :)

 

Thanks for sharing your stories,

Barb

[Jenny in Atl]

I didn't start because of Fi's diabetes, but it sure made the decision easier. I knew that unless we would have stayed with the tiny private school my older daughter was attending, I would homeschool Fi till she was at least 10 or older. I had heard so many horror stories about kids with Type-1 in schools being sent to the nurse while low (meaning a very low blood sugar level) and passing out in the hall way, or kid's pumps being torn off by uneducated teachers who thought they were pagers. Since we were going to bring home my older daughter, Fi's illness only made me more confident that this was what was best for them both. Of course, a short while later both were diagnosed with Celiac Sprue, so it was even better that they were home. No worries about contamination of their food, and either of them getting sick in school because of it. Six years later... here we are and hopefully, still going strong for a few more to come.

[Jen500]

nm

[Pajama Mama]

My special needs child does go to ps. Actually he goes to a private, special school for children with visual and other issues. I had to be honest with myself that *I* was not qualified to be his teacher. He needs pt, ot, speech, communication therapy and so much more. I am his teacher during the summer when school is out and it is exhausting. I am following the schedule that I asked his school to provide.

 

I am hsing my other 2 kids. Dd7 has no issues-thank heavens. Ds11 has Asperger's, ADHD and thyroid problems. He might have an autoimmune disorder but the tests haven't come back yet. He tried ps in 2nd gr and it was horrible. My 2 kids are using a cyberschool but I weed out some of the fluff and add some of our own materials. Being at home allows ds the ability to get his work done early and then time to work on what he wants to do. It helps him avoid the bullies the always seek him out because of his odd behaviors. It also allows for ds to take frequent breaks. His thyroid issues can make him very tired at times. Allowing the breaks we can avoid many meltdowns. We have therapists that come to the home and work with ds. He has alot of problems with social issues. I get tired of people telling me he has social problems because he's hsed. Umm, no...he has had those problems since he was a toddler and he WAS in preschool at the time. He has Asperger's-that's why-thank you very much. I need to prerecord that and just push play when well meaning people start with me:glare:

[FO4UR]

My oldest ds has life-threatening food allergies. It isn't my first or only reason to HS, but HSing certainly takes a lot of stress off of my shoulders regarding his health.

[Ottakee]

I don't know if you would call my girls chronically ill or not but they do have a very rare mitochondrial disorder---they have POLG-1 and LHON--one is a nuclear DNA mutation and the other is a mitochondrial DNA mutation. As of our last doctor's appointment they were the only 2 known cases in the world with this combination of mutataions. Many people have one type or othe other but they have both types and 12dd actually has at least 1 more mutation.

 

They are actually quite healthy in day to day life---no illnesses this winter, except 1 bladder infection. They didn't even get colds, etc. When they were little they were ill a great deal. Now they are doing great on their 40-50 pills per day.

 

That said, 12dd has hypo-thyroid, IgA and IgG deficiencies, seizures, bipolar, mental impairment, ADD, the mutations (maybe the the root cause of everything else), growth delay, spastic bladder, CP, and likely more. 11dd does not have the thyroid problems and is higher functioning. She does though also have migraines, Chiari I malformation, and kidney cysts.

 

This means lots of specialists appointments for us---although the only thing we see the primary care doctor for anymore is warts---of all things.

 

Since this is unknown we don't know what the future holds. One mutation can lead to blindness but not in all cases, these can be degenerative--meaning loosing skills and abilities over time, but again we just don't know. We just take one day at a time.

 

My 11dd is going to be doing 4th grade work this fall though she should be a 6th grader by age. My 12dd is doing 1st/2nd grade work as she is more impaired overall.

[Mom2boys]

My oldest ds has life-threatening food allergies. It isn't my first or only reason to HS, but HSing certainly takes a lot of stress off of my shoulders regarding his health.

 

When we started homeschooling, both of my sons had life-threatening food allergies, and my younger son had just been diagnosed with neurofibromatosis 1, which made him more prone to learning disabilities. These weren't our first or only reasons to homeschool either, but I also felt it would me much less stressful to homeschool.

 

Six years later, ds11 has outgrown his food allergies, ds6 has no learning disabilities, but we still happily choose to homeschool for many reasons. :)