Why my Daughter With Autism Wears her Hair in Cornrows; Even Though WeGet Strange Looks

Our daughter has always marched to the beat of her own drum.  From the moment she came to this world we know she was like no other.  She brought a strange peace about her, which as long as we could keep her body in balance, maintained.  She could swing for hours in her baby swing, just staring at the lights above her.  We didn’t know at the time that she had autism.  We wouldn’t find out for years to come.

She loved to cover herself in food as a young toddler.  A bowl of yogurt would calm her down.  She would wear it from head to toe, but washing it off made her angry.  We of course couldn’t allow her to walk around coated in yogurt, we had to find other ways to keep her calm.

She always loved it when I would play with her hair, even before she could speak to let me know.  The pulling of her hair seemed to calm her.  Even when she would let out a grunt to let me know the pony tail was too tight she remained calm, yet she would scream if she touched water as if water were acid burning her skin.  None of her body seemed to work the same as ours.

We started off with pigtails, but soon she began pulling them out only to get me to put them back in.  We added more and more pony tails.  The more she had the more she seemed to calm down.  It was then that it hit me, our daughter’s hair being done was what calmed her.  She could have it brushed for hours, but really what she liked was the tightness of having it pulled, and so that is when the braiding began.

It amazed me that the same child who could not sit still on the couch long enough to have a shoe put on, or stop herself from shrieking and arching in the car could sit peacefully to have her hair pulled on to be braided, but without question it brought her peace so it brought me peace as well.

She is now seven years old and her braids are now a retreat.  There are many reasons why we continue to row her hair “as needed” despite the fact that she faces some adversity at school and in public.  Other than the sensory aspect, our daughter thinks her hair is beautiful that way.  She loves her friends who wear their hair in braids and rows and though their skin colors may be different shades than hers she does not see the world through the looking glass that is tainted by a soured world that has been created by flawed and tattered patterns of thinking.  It has taught her how to stand up for herself.  She has learned to speak directly to people to tell them if they do not have something nice to say to her then she would prefer they left her alone.

It stops her from chewing on her hair.  As part of her autism, nearly everything goes into her mouth.  Her hair is in her mouth nearly constantly.  When we take the time to make her hair “beautifully braided” she makes a conscious effort to remind herself to break away from sensory behaviors that are unhealthy.

It teaches her patience.  In no way is it a quick and easy hair style.  She has learned over the years to sit for longer and longer amounts of time without squirming, even if she stims, she has to hold still enough to get her hair just how she wants it.  It has been a wonderful tool in teaching her to learn to feel her body and be able to control its motions.

It helps us spend time together in a positive way.  It helps us connect.  Human connection on a personal level is not always easy for a child with autism.  The more times she sits for braids, the more I get to learn about her.  Her body is nearly always busy, and when it isn’t she prefers to be alone.  This gives us a wonderful opportunity for positive connection.

To be honest when she was just a bitty bald thing swinging away staring at her mobile this is the last thing I thought I would be doing seven years later, but this is what mothers do; anything in their power to make a positive connection with their child, to help them thrive and grow.  Be it cornrows or ballet a mom’s got to do what a mom’s got to do.

Learning to Embrace Homeschooling our Special Needs Child and Why it Wasn't Easy

Our daughter started off her kindergarten year just like every other eager five year old.  She counted down the days until she could get her oh so grown self onto the bus, make new friends, meet her very first teacher, learn to read, and gain that little bit of fly-from-the-nest independence that many children desperately urn for by their fifth birthday.  Sadly, due to her declining health, she could not have all her heart's desires, not in the way most children her age could at least.

We tried our best to make it work.  Though it was not the picture she had imagined from witnessing so many before her enjoy the simple pleasures of attending elementary school, we did all we could to assure that she was able to have as many of the same experiences as possible.  There were still some unavoidable differences; she got dropped off and picked up each morning/afternoon curbside so that we could carefully unload her wheelchair to be sure she had the energy to make it through the day, we had to hire a private nurse to attend with her so that she could manage her vast medical equipment and health care needs, her backpack contained more medical supplies than books, and countless other subtle to large differences that set her apart from the typical kindergartener.  Even with a special plan in place to help our daughter succeed educationally despite the effects of her mitochondrial disease, our local elementary school only had the pleasure of knowing our daughter for two months before those options were no longer enough to maintain proper education in a safe environment for her.   She was absent, more than she was present due to frequent hospitalizations and illnesses.  She simply became too sick to attend school.

At that point it was clear the only choice for her was to be homeschooled, so that is the choice we had to make...

I would be lying if I said it was an easy choice to make.  The road to acceptance was long and difficult with many bumps along the way.  Homeschooling our daughter was not something that had ever crossed our radar as parents.  Not only had my husband and I both gone through the public school system to achieve our educations, my husband also spent years obtaining a postgraduate degree so that he could teach within the public schools.  It was very far outside the boundaries of our comfort zone, and something that we just had never chosen to put much thought into.  We had no problem with the concept of homeschooling itself or others who had chosen it as their children's educational path, it was just not something we expected, and because it was not something our daughter initially understood or wanted for herself it made it all the harder to embrace. The inability to help her succeed in public school, and what at first felt like a forced decision to homeschool honestly just felt like one more thing that her disease had taken from her, when in reality we were looking at it from all the wrong angles.

There were many days in the beginning that I felt as though I was failing her.  As she would sleep the days away unable to be alert and present for lessons I neglected to see how we could benefit her any more than her previous educational arrangements.   Though I knew that it was her body that was failing to support her and not me, I often lacked the courage to assure myself I was good enough to make it work.  I eventually realized that was my main fear when it came to the decision of homeschooling all along; feeling solely responsible for the possible downfall or success of our daughter's education.  We would no longer be the supportive educational role, but the single players in such an important part of our daughter's life, and while that control might be some family's reason for choosing to homeschool, that created an intense fear in me that kept me from being able to fully embrace it.

Our little girl is now in third grade.  The decision we made, with the gentle guidance of our daughter's physicians, to teach her at home was one of the hardest we have had to make for her.  What has made it easier over the years is seeing all of the; educational, physical, and emotional benefits unfold for her as a result of it. She has made academic progress we were unable to attain while she was simply too exhausted in a classroom setting with teachers who were unable to give her that one on one attention she needed to learn. We have the ability at home to work around her, which is nearly impossible in a public school setting.  She sleeps when she needs to, and we school when and where she is able.  If that means we are doing lessons on the Ipad from inside her hospital bed, then that is where we do them.  Although we cherish the days where we can break out into the fresh air or get down and dirty with hands on activities we know those are blessings that we can not take for granted.  We never know what the days will be like for her.  While I had no original desires to become a teacher, I had to, for her.  It has been both an exhausting and very rewarding journey to say the least.

I will admit there are days when I still grieve over what feels, at times, like the loss of a dream. The ebbs and flows of emotion are like waves upon the shore; sometimes silent and gentle, other times roaring loudly and knocking me clear off of my feet.  It often comes on strongest when she is too sick to homeschool. She will sleep the day away curled up in a ball; her curriculum opened and ready, untouched on my desktop, with lingering hope that we will be able to complete another necessary day of learning.  There are days where I find myself reading chapter books out loud from the foot of her bed, stroking her delicate skin, hoping that maybe, just maybe she can hear my words and process even the smallest bit from her much needed sleep. Sometimes I question if I am really doing that for her, or for my own reassurance that we are doing all we can.

Today as I sat there again at the foot of her bed,  reading chapters to her softly drawn eyelids I paused a moment just to take her in.  Before I could even begin to start questioning myself, or our choices I gave her hand a gentle squeeze.  I know we are doing the best we can, and I know we are doing right by her.  The little girl who struggled to recognize the letters in her own name, can now read, she can write, and though she had the unfortunate circumstance of inheriting her grandmother's math phobia, I know we will get through that together too.  When you look at where we came from and where we are now I know we are already responsible for her success, together.

Adapted from "Embracing our Path to Homeschooling," originally published on Learning to Let Go; A Different Dream for Us