My child ate kleenex in his therapy session last week.
He nonchalantly picked up the box, pulled out a few pieces and started taking bites like it was a turkey sandwich.
When he was done, he broke the box itself in half, put it on his head like a hat, and got back to coloring the picture the psychiatrist had asked him to draw.
I felt a flood of shame, concern and a little bit of disgust (the texture of kleenex plus chewing seems yucky to me), but I thought to myself, “At least we are with a professional. She can help.”
I was wrong.
She looked at me and said, “He did this in his intake appointment six months ago too. Maybe he needs the structure a school environment would provide.”
I went home and googled, ‘My Child Eats Kleenex.’
(Not something I ever thought I would need to Google, but here we are.)
Turns out, it’s not uncommon for children with extreme sensory processing issues to eat kleenex and other paper when stressed. It provides input when a child is dysregulated.
At the time of the kleenex eating incident, my child was in a room with no windows, fluorescent lighting and not a single kid-friendly color or toy in sight. Then he was asked to draw pictures of the things that make him the most anxious.
He didn’t meltdown.
He didn’t refuse.
He didn’t curl up in a ball and panic.
He ate the kleenex and then went about his task.
Although it is not a long-term coping mechanism I want to enforce, I can see he did the best he could under stressful conditions.
It adds up. On some level, it makes sense.
But the psychiatrist (a really, really good psychiatrist at one of the top-rated hospitals in the nation) questioned our educational choice as a reason for the behavior.
This is, by far, the hardest part of homeschooling my children with special needs.
When my oldest son could barely get out of bed in the morning and was in excruciating pain when he walked, we took him to a pediatric rheumatologist.
His blood work was off. It was clear, as least to his pediatrician, that he could potentially have an autoimmune illness that needed attention. She urged us to get to a specialist as soon as possible.
When we did, the expert asked my son a few questions that he was not able to answer. (Answering open-ended questions about feelings has never been my son’s strong suit. He is on the autism spectrum. Conversations around emotions and body awareness are very difficult for him. I am pretty sure he may have meowed at the doctor, instead of answering yes or no.)
After just a couple of minutes, she looked at me and said, “Well, he is a teenage boy. If I were homeschooled and could stay in bed all day, I probably would too.”
I left in frustrated tears.
A few weeks later, a simple blood test with a new doctor confirmed my son’s lupus and Sjogren’s syndrome diagnoses.
The first doctor didn’t order the blood test, because of her personal feelings about our educational choices.
And my son went without treatment for another month because of it.
The Hardest Part Of Homeschooling My Children With Special Needs
Being with my sons and all their needs, day in and day out is what most of my friends assume is the hardest part of homeschooling for me. It isn’t.
Trying to come up with creative and out of the box lessons that accommodate my sons’ learning differences is something I write about a lot. But it isn’t the hard part.
Seeing my boys struggle with seemingly basic educational approaches is not easy, but it isn’t what is most difficult.
The hardest part of homeschooling my children with special needs is dealing with uninformed doctors and therapists.
Luckily, we have had twice as many professionals verbalize their support and even applaud our decision to homeschool. I am not doing this against medical advice or in a vacuum.
But every time we need to find a new doctor for a new diagnosis, I am filled with dread.
I feel like I have to defend our choice and explain the benefits, not because I want support for our homeschooling decision, but because I am worried the doctor will dismiss our concerns because of it.
It’s not right. It’s not fair. But it is our reality.
Homeschooling my children is quite possibly the best decision I have made as a mother.
Beyond any one treatment plan, beyond any therapy, beyond medication – the one constant in my sons’ diagnoses is that they are in a supportive, encouraging environment that accommodates their academic, social and emotional needs.
Both have made progress against insurmountable odds.
Both still have a semblance of self-esteem and confidence, despite the messages they often receive from the very same doctors who should be helping them.
Homeschooling is the easy part.
If you are homeschooling a child with special needs, please, let me encourage you – you are not alone.
You are the one who sees your child the most, knows him best, and is fighting every day to figure this life out.
It can feel lonely to be sure, especially as we navigate the maze of interventions, therapies, and doctors.
It’s so, so hard.
But it’s so, so worth it.
So, what can we do when we have a doctor who is not supportive of homeschooling?