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Wednesday, May 28, 2014

You’re thinking about homeschooling your special needs kid…

…but his specialist says, “No way!”
What do you do?
Updated 5/9/2020:
I originally wrote this post for The Homschool Post (HSBAPost), but that site went offline years ago. This is an important topic for my family, so I've pasted the original post and comments here.
medical homeschool-001

What if my kid’s specialist says, “No, Don’t Homeschool!”?!

When our 8-year-old was just a tiny tyke, not even a year old, one of his specialists said homeschooling him would be a mistake.  We were already teaching our oldest (now 14, he was in 2nd grade at the time) at home.
You see, Peter has a very visible, but virtually unheard of, medical condition called Lamellar Ichthyosis.  His skin doesn’t shed in microscopic bits the way yours or mine does, causing him to develop thick, itchy scales on his scalp, his neck, his torso, and other parts of his body.  This leads to physical discomfort and various medical issues, as well as an unusual appearance.
What if my kid's special says, "Don't Homeschool" ?
His dermatologist was worried that if he learned at home, we would overprotect him, keep him away from prying eyes, and stunt his ability to cope with the stares and questions of outsiders.
What if he couldn’t learn how to deal with the world as it is?  What if he didn’t develop coping mechanisms for coping with being teased?  Or not being accepted by his peers?
Indeed.  Better to see yourself through the eyes of outsiders who don’t know you instead of the ones who love you early on, right?

I admit it.  I went into Mama Bear mode.

My oldest son, who has no physical difficulties, felt unaccepted at school and this was a large part of the reason we brought him home.  He woke up every morning crying and begging not to go to school.  The school was not meeting his needs academically and he was being bullied.  Endless teacher conferences, both on the phone and in person, had done nothing to solve the situation.  My being present at the school as a volunteer made no difference.
I did not want my younger son to experience that on a daily basis.   I was not going to send  him into the wilds of the schoolyard in the hope that he would learn to cope.
I disagree with the idea that tearing kids down early on will help them grow to be better adults.
I also admit that my personal experience did have a tremendous impact on my view of the situation.   As an adult who was relentlessly bullied at school, right up until 9th grade, I can say that being bullied doesn’t necessarily make you stronger.
It can leave you broken.
But at the same time, I understood the dermatologist’s point-of-view.  She was not the only expert to offer this advice, and I think it stems from a big misconception about homeschoolers.

The average person doesn’t know what you do all day.

Sketching the pondIt’s true, y’all!  The person on the street who’s never homeschooled, whether they support what you do or think it should be illegal…they don’t get it.  Your Mom doesn’t get it.  If you’re married, your spouse (if he or she is not actively homeschooling) probably doesn’t get it.  Shoot, I didn’t get it until I was doing it.
I’m still getting it.
It is likely that many of them envision your kids sitting in a room at little desks all day with no one but themselves for company and no one but you as an authority.  And I suppose there probably are some homeschools like that.
You and I know that every homeschool is different, though, right?

But the human imagination is limited.  It tends to conjure up derivatives of what it already knows.

You can readily see this when you watch a Sci-Fi flick.  The aliens tend to look like humanoids that have been changed in some way.  Things like flying cars appear for transport, looking remarkably similar to the cars we drive right now.
If you watch an older (say, circa 60s) film, you may see a handheld computer that looks exactly like an iPad—yep, I’m saying that tablets were probably first imagined by movie makers.  Not an original idea at all.

So, when you say you “homeschool,” and what does that conjure up in the minds of those who don’t?

Homeschool kids in a treeThoughts of school, I would imagine.  Maybe a room with desks and 30 minutes of recess.
They may not know that you eat lunch at the park when the weather is fine.  That the kids know all the librarians by name (at 2 or 3 different libraries) and easily ask them for help finding the book they are looking for.
Maybe you spend more of your day out of the house than in?
Maybe the idea of sitting still at a desk all day is as foreign to your kids as bell bottoms?

Maybe people don’t realize that your special kid is learning to cope with stares and difficult questions from strangers, but on his own terms.

It’s easier to learn to swim a bit at a time, rather than to be thrown into water over your head all at once and sink.
My son has grown so much in his social skills and his awareness of self.  There was a time when he didn’t want to be around other people.  Now he plays on the playground, participates in Cub Scouts, goes to club activities at our local homeschool group…all on his own terms.
We haven’t hidden him away from the world.  We’ve challenged him.  We’ve nurtured him.  We’ve accepted him, just as he is.

Is school necessarily bad for kids with special medical needs?

Nope—every situation is unique.  Schools vary so widely from place to place and a child’s specific needs will also vary widely.  In our particular situation, the school options were limited and not ideal for our child’s needs.  The schools were not able to offer him things he needed that we could offer him at home.
I want to reassure parents that if their child’s specialists are recommending school, that advice may be based upon some misconceptions about homeschooling.  You know your child best.  If, after researching the available options, you find that teaching your child at home will best meet his needs—go for it!
You can give him the support he needs without stifling his growth.

May is Ichthyosis Awareness Month!

Peter’s condition is very rare and often misunderstood.  It affects him not only physically, but psychologically due to the way it is perceived by the public.  I invite you to find out more about Peter’s personal journey with Lamellar Ichthysosis here.

Do you homeschool a kid with special medical needs?  Did your child’s specialists support that decision?

  1. SisterTipster says:
    Now grown, I knew all along I was dealing in ‘differences’ with my kids, but a few years ago~in the throws of all things, homeschooling, the specialist said, EVERY VISIT, “TELL ME AGAIN WHYyyy you homeschooooool these children?” in his almost broken English/earnest tone. HA! Well, after about 6 times of telling/explaining/sharing, we found someone more accepting of our choice to nurture our children AT HOME. Was HOMESCOOLING worth it? Jury IS still out…they’re teenagers NOW and little I did ‘back then’ is right in their eyes, but I’d say I did as good and in some ways a BETTER job of preparing them here at home with me. Have there been issues? Oh yes! Have there been failures? Oh yes! But in the final analysis, I’m still incredibly PROUD of the time I spent with them…however feebly poor or stellar in brilliance it was. **My major premise IS that parents LOVE their own children so much more than any professional EVER could~meaning all the wonderfully gifted and caring teachers out there, and that a true basis of LOVE will problem solve and work ever so much harder than those even with the best of intentions to do as best a job as possible~Parents ROCK**~and we should NEVER forget this! It’s easy to do so, while in the trenches of the everyday…I know, I have. Most of us will, but to press on and make each day a NEW one~seeking the very best for our little one(s) will bring about the best of outcomes and potentials! (Now, where did I put that PRO-homeschooling STATS?? LOL)
    I always love reading your thoughts, Susan~and your young man is amazing! YOU GO GIRL! (((HUGS)))
    • Thank you, Sister Tipster! Yes, he is amazing.
      I agree—parents have so much more invested in their own child than a doctor ever can have. When Peter was born I was teaching his specialists about him simply because I was able to invest the time into researching his particular case and living with him 24 hours a day. I’ve learned so much from this child and he is capable of so much. We’ve also had other professionals tell us how good it is that we are able to meet his particular needs by homeschooling him.
  2. Yvette Edwards says:
    Thanks for this post. I have found it quite encouraging!
    I do now homeschool a child with special needs and her therapists and school “experts” very loudly spoke against it. I will say…my daughter is amazing and creative and enjoys learning but showed little of that in a school setting as it was too sensory overwhelming for her. She has blossomed immensely in the less than 3 months we have been on this awesome journey! She is free! and happily learns new things daily! We can hardly carry enough books home from the library to satisfy her need to read! On the social scene? She asks for it now…she makes plans now…she enjoys kids who are younger than her and even toddlers who put stuff in their mouths! I say all this because when she was attending public school these things were not her at all. I knew these skills, these characteristics were in her (I had seen them prior to 1st grade). I knew they were a part of her heart but they were seldom displayed due to the -overwhelming nature of the public school environment. When she would arrive home she would simply shut-down, close-up. We seldom got to spend time with our real daughter …. just the exhausted, pushed beyond her social and sensory limits girl who simply needed someone to press the off button on her robot self to close out the day! It was saddening, heartbreaking, debilitating to watch.
    Now? She is free, she is amazing, she is sponging up knowledge, she is quite social (certainly, measurably more social than before), she is helpful, she is self motivated, she is … did I say amazing!? Best thing I ever did for her or our family was to pull her out of public education. It was a difficult choice, as I grew up in the system and had a parent who worked in the system as well as many friends. But for my girl…she needed something different! and for me? for my hubby-her daddy? for her sister? for her family and friends? we received the gift of that wonderful young lady who was all locked up inside back into our lives daily. And for her? She says, I am free, mom! And she is!!! FREE.
    If you are reading this and wondering….I will say this. It is no accident that you are the parent of your child! You know what is best for him/her/them. If you think homeschooling would do them good…do it! You can do it! They can do it!!!! Everything that looks helpful for your child/for your family is worth a try, isn’t it?! Enjoy.
    Thanks again for this wonderful post! SO Encouraging!!!!
    • Thank you, Yvette—Yes, wonderful things can and do happen when a child is allowed the time to just be themselves without being constantly bombarded with outside stresses and expectations. Even adults will shutdown, freak out, or flee when they are overwhelmed. Congratulations to you and your amazing daughter. :)
  3. Courtney says:
    Thank you for this post. I had fallen out of the habit of reading your blog/posts but clicked through today on an instinct and so glad I did. We have a young child with ichthyosis and home schooling is constantly on my mind as an option, weighing the pros and cons. So i found it really interesting to read some more of your thoughts about why you chose to do it; thank you.
  4. Thank you, Courtney—If you ever want to “chat” about it, message me on FB or through my blog. I don’t know if we would be homeschooling Peter if we hadn’t already been homeschooling our other kids, but working with him at home has been a very good fit for him. He does have sensory issues (he’s a very sensitive kid) that we feel are related to his Ichthyosis (our family doctor agrees). When you consider that the skin is our largest organ and affects SO much or our bodies, having a major skin issue can really add to the sensory load.
    Learning at home has made it easier to minimize the impact of unwanted sensory input (putting on a cooling vest if he gets too warm, having a snack if he’s a little hungry, moving around if he feels antsy). It’s also given him the freedom to pursue things that he’s passionate about and to learn things in untraditional ways. It’s not always easy (it’s often not easy 😉 lol), but it’s working for us right now.
  5. Why Oh Why do people think that the public school experience is the best way to learn how to cope with life’s challenges? Have they never seen The Breakfast Club? Or Sixteen Candles? (yeah, dating myself there)
    The traditional school is not geared for nurturing the individual child. Would a doctor recommend that a parent teach their child to swim by throwing them into the deep end of the pool?
    Fortunately, I have yet to meet a doctor or nurse who expressed anything but interest and encouragement about homeschooling. Perhaps they sensed that if they were critical I might hit them over the head with a bedpan. :p
    • The Breakfast Club—absolute proof of what is wrong with kids learning how to behave from their peers. If it dates you, it certainly date me as well. 😉
      One of the places I ran into this attitude that to “fit in” kids who were different needed public school was in a pamphlet that was put together to help caregivers of kids with Ichthyosis. It made me angry because I knew that just that one line would discourage many parents from even considering homeschooling their kid with special needs.
      As far as where the idea comes from…I think…I may be wrong…but I think what it boils down to is a lack of imagination. If your kids don’t do things the way that we did them growing up, won’t your kids be weird? And isn’t weird bad?
      I’m weird in spite of my public school experience. It took me most of my life to appreciate my “weirdness” and to learn that it’s a gift, not a curse. Why the heck would I want to be like everybody else? Why should I expect my kids to be like everyone else? Why, indeed.
May is Ichthyosis Awareness Month!
For those of you who don’t know, our son Peter (age 8) was born with a  rare, genetic skin disorder called Lamellar Ichthyosis.  Learn about Peter’s life with this often misunderst00d (and even never heard of) condition here.
If you have a child with special needs, you know it affects the whole family and your perception of your other children.  Last May I hosted a special event in honor of Ichthyosis Awareness that was aimed at celebrating all of our children:  Release the Butterflies.  

What are you doing with your butterflies this summer?

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