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.

What do You do When You Find Your Child Has Eloped

You implement all the proper talks and teachings, the dangers that come with impulsive behavior.  You think that it won’t be your child.  You think that they will always come to you, trust you, and remain within the boundaries that have been set for them by you as their parents, guardians.  So, what happens when even after all of that you find them in the middle of the night doing everything within their power to elope? Worse yet, what happens if you find out they have been successful? You are crushed right? What if it wasn’t your teenager we were talking about? What if it wasn’t a boy they were running off to see? What if marriage had nothing to do with it?

If you are like me perhaps the only usage of the word “elope” you knew of involved young adults and teens running off to get married without their parent’s knowledge.  It was an act that was hurtful, disrespectful, and sometimes depending on the situation even dangerous.  Even if you were to “google” the word elope you would come up with hits such as “elopement packages,” “5 elopement packages for low key couples,” “elopement (marriage),” but other than young adults/teens looking to get married in a hurry or couples looking to get married privately there is another much more dangerous version of elopement many have heard about, but very rarely would associate with the term.

So What is Eloping?

Even if you were to look the term up in a dictionary, it has it listed in several different ways, but all of the definitions I have incurred add up to one thing “a secret departure, with no known whereabouts, especially to become secretly married or cohabit with a loved one.”  These definitions only carry a half truth, and this is something that needs to change, especially to those of us in the special needs community who have loved ones who engage in eloping, no pun intended.

Eloping is very common in children with Autism Spectrum Disorder, and it has nothing to do with marriage.  According to Abby Twyman “Elopement is when a person leaves an area without permission or notification which usually leads to placing that individual in a potentially dangerous situation,” (Twyman, Abby M. ED, 2012).  Elopement happens very frequently within the Autism community almost as often as seen in the Alzheimer’s community.   Usually the likelihood of elopement (wandering, fleeing) increases with the severity of Autism, but can also be seen in children with high functioning autism, especially if they struggle with impulse control.  Recent surveys conducted have shown that half of all children on the spectrum have struggled with some type of eloping behavior.

Eloping is Not Just a Problem for the Nonverbal

One of the most common misconceptions, even amongst the special needs and medical community, with a child on the spectrum who wanders, is that they will only engage in such activities if they are low functioning or non verbal.  This is a frustrating and dangerous misconception.  I can tell you this from experience.  Our daughter is seven years old, and very verbal, more verbal at times than her siblings who are not on the spectrum and yet there is a difference between speaking and appropriately communicating.  There is also a difference between appropriately communicating and being able to control your impulses, have safety awareness, social awareness, and be able to link cause with effect appropriately.  We even thought ourselves the older our daughter got the less likely she would be to elope, but that has sadly not been the case.  It is a dangerous and frightening set of events in our life that unfold daily.  Trying to get her to fully register how dangerous her behavior is, is quite like trying to catch water in a butterfly net.  It just keeps slipping right on through.

I heard a statistic a few weeks ago that nearly 90% of all deaths that resulted from elopement were drowning accidents.  That same week we found our autistic daughter happily swimming in the kiddie pool out back while we were all soundly sleeping in our beds.  That was our breaking point.  The sheer terror of knowing all the possibilities was more than a wakeup call it was pure torture.  I emotionally broke down.

Please know if you are reading this and are feeling ashamed not knowing what to do about your own child’s eloping behaviors that you are not alone, and you are not an irresponsible parent.  My husband and I are well equipped with training and degrees that should make us more than qualified to be able to manage the difficulties that come with raising a child on the spectrum, but despite its ups, there are so many downs.  It is not by any means an easy sailing sea.

Our daughter has put more than grey hair on my head these past few months; escaping, making her way into neighbors’ homes, walking out the front door, making her way out or over a 6 foot privacy fence, and even  finding a way to pry open her second floor window.  We are constantly having to find solutions for all of these matters, and sometimes I do cry myself to sleep wondering if we'll ever be one step ahead of her.  At the pint size of only fourty-four inches and pounds I often wonder how she is even able to manage the physicality of some of these things, but she is, so we have to be prepared, literally at all times.

What Can be Done About Eloping

We have had to take several measures here over the past several months to keep our daughter safe.  The first step for us personally, and everyone is going to have different causes and escape routes for their child, was to remove any large furniture from her room that she could climb.  This would keep her safe from trying to open and get out her window.  Thankfully her windows are well above her head, and unless she builds a staircase of books, which she may one day decide to do, she should be safe for now.

The second thing, because she is verbal and able to tell us at least some of her needs, was to figure out what would help her sleep better at night, when she was usually trying to elope.  For her it was to not sleep in a bed and sleep in a smaller space.  So, we turned her closet, open door with a mattress, into a small sleeping cove, and she has been much happier sleeping there.  She had already blown through nearly every sleep medication out there and despite that was still having night time safety issues, so at that point we were truly willing to try anything as long as she was happy, safe, and sleeping.

The third thing was to install door alarms on her bedroom door and all of our outside doors.  We placed them high up where she cannot reach them, since they do have on off switches.  They have so far been a deterrent, and when they haven't been, we have quickly been able to catch her walking out the door.  The good news is that they are relatively cheap.  The only bad news is if your child is extremely sensory defensive you may have trouble getting them to walk out the door when you want them to.

The fourth thing we did was buy a Road ID bracelet.  This was an easy way for us to put her information down on a bracelet that was comfortable enough for her to wear, but not easy for her to take off.  That way, if she did wander and someone found her they could call us as well as be aware of the fact that she has not only autism, but some medical problems that may need to be addressed if she has been gone for any length of time.

The fifth thing we did was sign her up for a service called Project Life Saver.  I know not every area in the country has one yet, but if your area does or a similar service I would highly suggest it, even if your child has not eloped more than once.  If they have even begun toying with the idea of wandering it is time.  Project Life Saver is a bracelet with a GPS tracker in it that is run by your local police precinct.  That way when you call 911, in the case that you have to, you tell them your child is missing and is a Project Life Saver member.  They immediately can start tracking them.  It cuts their search time down to three hours down from 36 hours.  The difference between three hours and thirty-six hours is the difference between life and death for a child.

Eloping is Something We all Need to be Aware Of

Whether you are a special needs parent or not, eloping is something we all need to be aware of.  It could literally mean the difference of a child being returned home to their parents or not.  There is no type of parent who has an autistic child who wanders.  Autism and other types of special needs come with all types of struggles and eloping is just one of them.  It is very hurtful to see comments on news media posts when a special needs child wanders, from community members like; “where were the parents,” “those parents should be in jail.” “I bet the parents are scum,” “that child should be removed from the parents when he/she is found,” etc, every single time a child with autism or special needs elopes and it gets broadcast.  I will say it again, there is NO type of parent whose autistic child wanders.  It can happen to anyone and it literally only takes a second.  Even with all of our safety guards in place the scary and sad truth is our daughter could get out tomorrow while one of us is in the bathroom, because she saw a butterfly out the window she wanted to follow, or thought she heard the Ice Cream truck.

The quicker we see eloping as something we all need to help each other with, the quicker all of our children will be safer.  Let’s stand together, hold hands, form a line, and help each other out.  We can’t point fingers if we are grasping each other’s hands.

For the Days you Think you Just Aren't Good Enough

I woke up at 7:30 just like every morning, placed my feet upon the ground, but I felt heavier somehow.  My first thought was it must have been the extra cookies I had indulged in the night before, but I ate them with my eyes closed, so clearly those calories didn’t count.  It was something else and I just couldn't put my finger on it.

I stepped over my four year old son, who had weaseled his way into our room somewhere in the middle of the night, just like all the nights before.  He was absolutely angelic, like a cherub, rounded cheeks, red luscious lips, long sloped eyelashes, blond wavy hair.  Let’s forget the fact that he was still covered in tinged dirt smudges from the night before, and somehow made it into bed still wearing his day clothes.  Let’s ignore that little factoid for now.  Obviously he put himself to bed while I had my eyes closed eating cookies.  Wait, no that would make me look worse.  Clearly there was some kind of break in the space time continuum, or something else that makes me not responsible for that

I tiptoed slowly out into the hall careful not to wake him, but still dragging this extra weight I could not yet identify.  The further I walked the heavier it got, a strange little invisible weight it was.  I opened my seven year old’s door.  She was sprawled face down on a sheet-less bed, surrounded by a mess that looked as though a tornado had hit.  A tornado that had only touched down in her room? Very strange indeed.  There were bits of paper, tissue, books, clothes, and dag nab it my cookies, all around her.  Her tiny body the eye of the storm, the signal of a sleepless night in the world of autism, one that had clearly wreaked havoc on her little mind, and on my poor little house, again.  The weight pulling me down increased again.  With a deep sigh I tried to wake her.

“Time for school.”

“I’m not going,” she huffed out the side of her toneless mouth.

“Dear child, you are, let’s go.” I picked her up over my shoulder like a floppy sack of potatoes, her outfit in my other hand.  The invisible weight now pulling me down from behind, and the weight of her decisions crushing me from above, each step painfully difficult.  I make my way quietly back through the hall trying so hard to not wake any “angelic cherubs” unintentionally because Lord knows, they only stay that way in their sleep.  I make it all the way to the top of the stairs, potato sack still in hand when BAM, there at the bottom of the stairs is the four year old staring back at me, now looking like he is in deep need of an exorcism.  Seriously, how do these kids get through the house without making a single noise?

“Jelly sandwich,” he says, no “hello”, no “I love you,” no inflection, no emotion, just demands.  So it begins.

I breathe deeply, trying my best to release some of the weight that now sits on my chest, a temporary solution at best.  I flop the sack of potatoes on the couch hoping by now she has enough life in her to begin dressing herself, apparently not.  I begin drawing up meds for three of our four children, intermittently calling out things like “come on we need to get going soon,” “are you getting your shirt on?” “Please tell Mommy when I come in there that you will at least have your underwear on? Right? Hello?” Another deep breath for now.

 “Jelly Sandwich,” says the four year old.

“You will have to wait.”

“My catheter leaked all over my bed,” says the eight year old.

(Wait… where did you come in??? ugh!)

“Ok, I promise I will be right there.” I check the clock, five minutes until bus, you have got to be kidding.  I do my best to pull all the weight I am now dragging.  I move back into the living room to find that sack of potatoes is happily reading a book in her underwear.  I move in.  She stands like the girl from The Secret Garden ready for her maid to dress her, legs straight, arms out, head up, dressed in seconds flat.  We move through the rest of the routine, I feel the weight getting a little lighter for the moment.  She gets on the bus, I wave goodbye.

“Mom, my bed is wet,” says the eight year old.

“Jelly sandwich,” says the four year old.

As quickly as the weight upon me lessened it returned again.  “Hang on,” I yelled, instantly feeling guilty for my reaction.  I moved my way into my eight year olds room working as quickly as possible to help her change and change her bed, not an easy task with all of the medical interventions she has to carefully work around.  None the less, she had a clean body and clean hospital bed.  One task down.  The weight lifted again, but only for a second.

“Can I get breakfast, and can you get my backpack so I can get out of bed,” she asks?

All reasonable requests, but I realized at that point I had not woken up ready to deal with the demands of our everyday life.  It wasn't anyone’s fault, not mine, not theirs, some days it is just too much for one person to bear.  Having realized this I took another deep breath, gently pushed the hair out of her face, and whispered gently “please give Mommy a few minutes.”

I felt good about this and finally thought I had reset my day.  I worked my way out of her room having identified what the weight was.  I was feeling the burden of being overwhelmed, and simply not feeling equip emotionally or physically to handle my responsibilities.  Feeling like that especially when it comes to your children can cause an immense amount of guilt.  Nothing in my experience weighs you down quicker than guilt.

I stepped out of her room and closed the door behind.  Confronting me immediately was that curly haired boy with a burning desire for a jelly sandwich.  I picked him up and headed for the couch so that I could take a quick breather and continue trying to reset my day before it really got off to the wrong start.  As I sunk into the couch and held the warmth of my little man tight to my chest.  I felt some of the intense weight of the pressure of the guilt I was feeling ease up.  Then a voice unexpectedly entered my peace.

“Um, Mom, I overslept and missed my bus,” said the twelve year old.

(Seriously where do you guys keep coming from)?

At this point it was inevitable no matter how hard I tried I personally was not going to win at this day.  If on any level it had been allowed I just would have gone back to bed and ended the day right there, status; failed.  Clearly with; one, two, three, four children, three of which have special needs that was not going to happen.  I really had to pull myself together regardless of the fact that I wanted to let the weight of my stress pull me straight to the ground and throw a big stinking toddler tantrum at that point.  With a huge deep breath and a solid reminder that; my four year old jelly loving child had not thrown a tantrum, my seven year old with autism who had not slept all night had not thrown a tantrum, my eight year old who had to wait for a bed change had not thrown a tantrum, and the half grown boy running ramped to get ready waiting on his crazy mother who was considering having a tantrum had not himself had a tantrum, then how could I?

The fact is this life is hard, but this life is also beautiful.  We have children with special needs, children with typical needs, but we have amazing children no matter which way you look at it.  There are going to be really awful days amongst days that are really wonderful, and we can’t let the weight of those awful days drag us back from experiencing what could be waiting for us, if we just believe enough in ourselves to keep taking one more step.  There are so many days that I don't feel good enough, or strong enough for this life, but I am.  I know I am, because I did it yesterday and the day before that.  I can do it tomorrow too.

On all those days you don't feel good enough, just believe, and just take one more step.

How Hot Chocolate Gave me Hope

Our six year old daughter is; beautiful, kind, courageous, smart, witty, entertaining, mesmerizing, and among other things also happens to have autism.  Behind those bright and sparkling eyes is a mind that operates in a way that we struggle to understand.  Where some things come so easy to her, like double digit mathematics “with no fingers or paper,” she struggles to work the equations that would allow her to move through this life with ease, like understanding that dumping out every bathroom product we own will result in an undesired consequence every single time.

She tends to be very set in her ways which leads to outward struggles for her and internal struggles for me.  Everything from, how we do things to when we do things, has to be done the way that she learned it, or it simply isn’t right, period.  Besides that behavior being difficult to parentally mentor, it hurts me to see her in a constant battle to make peace with things that most of us could just do without giving much thought.  That is why a sweet little First Grade assignment called “How to Make Hot Chocolate,” gave me so much hope and nearly brought me to tears.

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                “Did you pour the water in? Did you pour the water in? I need three marshmallows, did you remember the marshmallows?” She rocked back and forth in her chair mirroring the increasing force of her repetitious inquiries, a mixture of excitement over the treat she was about to receive and anxiety over the fact I might miss a step.

“I am working on it, patience please.”

“Did you make the water hot, hot enough to melt the chocolate?  Not too hot though, I don’t want it to burn me.  Is the chocolate milk chocolate? I don’t like the dark chocolate.  What about the marshmallows, how many marshmallows?” She rocked further and further back, the legs of the chair smacking hard off the tile.

“The cocoa will be as close to perfect as possible, just be still please.”

“Is there going to be clumps on the top, or the bottom? Is it going to be warm enough to drink? Will I need milk to cool it off? Will the marshmallows melt on top? Mom? Mom? MOM!?”

As I walked carefully to the table holding her cup of cocoa I hoped that it was worth the moments of frustration for both of us.  As much as I enjoyed the idea that we were about to make a notable memory together, I knew that it would likely end with her being disappointed, and me feeling regretful that my time and efforts did not live up to her unattainable expectations.  She was used to Daddy making her cocoa, and once you pave the way for her, there is just no turning back.  You own that concept.

Predictably so her cocoa craving smile soon turned to an emotional outburst as she realized that I simply could not and did not replicate Daddy’s cocoa.  She wanted to like it, she wanted to not care that it was different, but she just couldn’t, she isn’t wired that way.  Not only was she angry that she would not be having cocoa after all, she was genuinely mad at herself when no one else wanted it and she knew it would be wasted along with my efforts.  I tried to pretend not to care, but it honestly did bother me, not because I took it personally, but because the more things she rejects as having multiple options, the less opportunities she is going to have in life.  Our world just does not operate like that, people don’t operate like that, and soon I won’t always be there to hold her hand in life and inch her through her fears of trying something new.

I leaned back in my chair trying to remember it was just cocoa, hoping she would eventually do the same.

 

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It was the end of Christmas break and I was cleaning out our daughter’s backpack.  Among a stack of “take homes” and holiday projects was a writing prompt labeled “How to Make Hot Chocolate.”  I pulled it out carefully and began to read:

“1. First you ‘por’ the Milk

2. Next you put in the chocolate

3. Then you put it in the ‘mickerwav’

4. Finally you mix it in.”

I just stared for several moments, in near disbelief that the sheet in front of me could be her work.  It was though, unmistakably, her handwriting and her doodles on the back.  What didn’t make sense was the fact that those were not the steps we followed to make hot chocolate.  Those were not the steps that our daughter would have written down, had someone asked me to wager a bet as to what she would have described.

“Chloe?” I called to her as she was putting her shoes on, getting ready for the bus.  When she was finished with strapping her last piece of Velcro she walked over to me.

“Yes, Mommy?”

I got down on one knee and showed her the paper.  She stared at me, her giant grey eyes reflecting her unknowing expectations.

“What is this?” I asked gently.

“Oh, that is my school paper.  We had to write how to make hot cocoa.” She smirked a little.  A wave of blonde curls springing into her eyes.  I wiped them away and looked back at the paper.

“But,” I hesitated, trying to choose my words carefully, “this isn’t how we make it.”

“Oh, I know,” she said with a bounce in her voice.  “This is how Miss Emily makes it.  I drink it at her house this way.  The package says you can use water or milk and heat it on the stove or in the microwave.  She uses milk and the microwave.  It is good that way too, it tastes like warm chocolate milk.”

A flood of emotions instantly came over me, though I tried not to make it obvious.  As she walked away I looked back at the paper that now sat on my kitchen counter.  The assignment that had an original intention to reflect the class’s knowledge of a simple process had reflected so much more in our girl.  It reassured me that even though it might not come as easily or naturally to her, she did have the ability to grow and accept changes, that different wouldn’t always equal bad or scary, and that even though it will still be a long and challenging road, it will be one with many rewards along the way.

My Daughter is Autistic and That is Okay

Recently, someone who had not yet had the pleasure of meeting our daughter asked me to describe her.  We were inquiring about placing her into a playgroup at their facility and they were curious as to how she would operate within the group having, well, autism.  More specifically they wanted to know if she could get along with other children and follow direction from adults.  I explained that while following direction is sometimes hard for her, we have special cues for her that help her stay on track and that she gets along well with other children.  They were hesitant yet glad to hear it of course, and I could not help but feel I was talking about enrolling our furry family member into doggy daycare, instead of our six year old daughter to a playgroup.

As the conversation went on the all too often question finally came of “just how autistic is she.”  We get it all of the time, from those who have fears of just how difficult she will be to work with, to those who meet her and are surprised when she does not quite meet their stigmatic expectations.  I explained that our daughter is considered high functioning and that many times those who do not understand how broad the spectrum is or what they are looking for may not even realize upon meeting her that she in fact has autism.  Before I could continue to explain how this often makes things difficult for her, the person on the other end of the phone exclaimed “oh that’s great,” undeniably satisfied that my daughter’s autism would not get in the way of the happy environment they had created for their other families.  Though the clear attitude received that autism is somehow an insult; to my child, to our family, or to others, made my stomach drop, it is clearly a bigger problem that falls far outside the length of this one phone conversation.

 

1. Autism is not an insult.  More often than not when we explain that our daughter is on the milder end of the spectrum people react as though they are relieved for us, and often themselves, that she may not “appear” as autistic as they originally imagined based off of their often limited views of what autism is.  Although I know this reaction is not meant to harm and is only natural having likely never experienced truly loving someone with autism, the reaction is most unnecessary.  We just don’t view it as a rampant negativity.


2. Autism does not define our child, but it is a part of her.  Our daughter is who she is with or without the label of autism.  She is defined by the light possessed within her very being, not by a disorder.  With that said having autism has shaped how she sees the world and interacts within it.  Being afraid of my daughter’s autism is like saying you are afraid of my daughter, but only you are not looking at all of her, you are only looking at the parts of her you find difficult to relate to and understand.


3. Our daughter needs acceptance in group activities just as much as those group activities need her.  We aren’t placing our differently abled daughter into playgroups at the unfortunate expense of other families.  While it is true that the best way to teach an autistic child social skills is to integrate them with other children, it is also true that the best way to teach typically developing children social acceptance is to integrate them with children who are differently abled.  The best part is that kids are often the last to see these differences in the same light that adults do.  Stop worrying about the negative effect my daughter could have on other children, and start embracing the positive.


4. Telling us she does not seem autistic is not a compliment, although I know it is often offered as one.  As previously mentioned the fact that our daughter has autism is in no way an insult to who she is.  Comments like this one more so go to show that too many have a preconceived notion of what autism is and that it is somehow bothersome that our daughter has been “labeled” with it.

 

Much of the world is still clearly lacking awareness when it comes to such a highly prevalent developmental disorder.  While the current statistics from the CDC are showing 1 in 68 children have been identified with a pervasive developmental disorder, most people still only refer to that one guy they knew back in high school, or the key autistic character on a popular television show.  The spectrum is much broader than you think and since each person also is born with their own personality and family structure it makes each person with autism unique, just like the rest of us without.

Our daughter is autistic and that really is okay.  We, more than anyone, are fully aware of what that means when it comes to her.  We never mind people inquiring, but the approach is often rather off.  It is not her autism that is frightening or hurtful, it is other people’s views of what that diagnosis means for her that is.  I cannot speak for everyone who has a child with autism or different developmental needs, but I can tell you what would be a much better way to approach this situation when it comes to our daughter.