On Recognizing our Own

Gorgeous, violent, Raging and a Very Unsweet 16.  That is the title of the episode of Dr. Phil that I am currently suffering through.  And I do mean suffering.  This episode chronicles a family of a child that is very likely PDA/Autistic.  One of the quotes from Mom was ‘It is just not worth the battle of trying to make her go to school.  I give up.  I give up parenting because I get attacked’.  For God’s Sake Mom!  Has it never occurred to you to look behind the reasons why she is acting this way? Triggering to say the least.  And in this very moment, I realize why I despise ‘Dr.’ Phil.  Calling the child a brat.  Enforcing the reward system.  Sending children to ‘camps’ or ‘rehabilitation centers’…

And yet I am torn.  Because so many parents really do not get it.  I know I didn’t when my boys were in school.  When they were infants/toddlers I parented by instinct; I seemed to know what the boys wanted and simply got it for them.  I often blamed myself for the diagnosis of Autism in the beginning.  Autism was presented to me as a bad thing, something to ‘cope’ with.   Was I too smothering, did I too to much instead of teaching them how to do it? Did I “cause” or “enable” their Autism? Yet the boys were happy; always smiling and if they were crying I was able to figure out why and fix it.  And it felt good, and natural.  But I was made to feel as though I were ‘spoiling’ them.  It was not until they began their formal education that I was immersed in the ‘We have to make them normal’ lifestyle.  I KNEW my boys needed more support starting in Kindergarten.  But the way the supports are set up here, they MUST allow/force them to survive with the LEAST amounts of supports, and fail, before new supports are considered.  Read. That. Again.  Set up.  To fail.  HOW does that support the child???     I still cannot fathom the idea.

Fast forward to elementary school.  I was going through a horrible marriage.  I was struggling with a lot of personal things.  I basically checked out for 2-3 years, going through the motions and basically allowing whatever the ‘professionals’ thought was best to happen.  I was not entirely 100% (or even 50% present) other than ensuring basic needs were met; food, housing, hygiene.  I missed out on a lot.  I mean a LOT.

Towards the beginning of their middle school years I’d come around.  I was able to rally.  I started to question the authorities I’d been listening too, even those that claimed to be authorities on Autism.  Where I had previously fallen for the bait, hook line and sinker, I was now wondering if there wasn’t a better way to advocate than endless IEP meetings?  I was made to feel ashamed for wanting my children to have every accommodation possible in mainstream school.  In my mind I KNEW my boys would be able to do the things they needed, in their own time.  But that is not allowed in school.  One must keep up.  One must meet benchmarks set on chronological age and NOT by ability.  To me, this is so unfair and unreasonable.  (Little did I know I was Autistic at the time.  I thought I was just a no-good mom).

At the end of middle school I chose what sounded like a decent solution; a ‘charter’ school that has smaller class sizes but would still honor an IEP and was free.  It was what is called a “STEM” based school (Science, Technology, Engineering and Math).  Perfect!  One son is really into animals (Science) and the other is incredible at designing entire worlds in Minecraft (Engineering).  Math is a HORRIBLE subject for both of them but the school convinced me they would get support to help them through it.

Second. Worst. Decision. Of my life.  My boys were MISERABLE.  I was slowly coming to the realization that I too thought differently, communicate differently, felt differently, than most of my peers.  I had wonderful support once I actually sought out #actuallyautistic voices, websites, groups and relationships.  One woman changed my life.  Was my catalyst.  I am wandering now or I’d go into more specifics, but suffice it to say that she changed our lives 1000% for the better when I was able to realize that I simply was not able to handle the processing skills needed to help my boys through mainstream education.  Once I was able to realize that, yet still wanted the best for all our mental health, I was able to start advocating.  A school was suggested, a private school, that perfectly met all our needs.  Research was done, funding was secured, and the blossoming of my now teenage sons has begun.  They no longer say they would ‘Rather die than go to school’.  While one says he ‘still doesn’t like the IDEA of school’ but he ‘loves new school’, I am beyond thrilled.  This has allowed me to allot more spoons to advocacy and learning how to advocate.  I can devote more time to researching and learning from my Autistic peers.  I feel joy in my heart where I once felt shame.  My instincts are correct, I can understand and teach my boys how to self-advocate.  Their self-esteem and awareness have increased exponentially.  My boys are valued, respected and made to feel at ease in their new school.  They are given increasing responsibilities (One is in charge of care of the school cats, the other in charge of the chickens) and praised at every opportunity.  They feel loved and secure.  I am beyond blessed.

So eff you, Dr. Phil, for not seeing the neurodivergent child inside the behaviors.  Eff you for parent shaming and victim blaming.  You love to tout your ‘Forensic Psychology’ expertise but where the fuck is your insight?

On Autistic Identity

Dear long neglected Blog (and readers, if there are any lol)

It’s been a long time.  A really long time.  I kept telling myself I didn’t have the time, the energy, the inspiration, or the motivation.

In reality, I was so busy masking, struggling, treading water, trying to keep my head up and not loose my shit.  Writing was the last thing on my mind.

Even though I know it connects me, helps me to feel the things that are going on in my head, that it may have helped during that time.

I shut it out.

The writing, the act of sitting down and composing, editing, re-reading, re-editing, finalizing.  It all seemed too much on top of ‘what I was already going through’.

So get ready for an info dump.  Hang on to your hats.  Get comfy and get some popcorn, cause here it comes.  All of it.

Regarding Autistic identity:

I am Autistic.  Somehow, I missed diagnosis for the first half of my life.  I did receive numerous MIS-diagnosis, with medications and treatments that never ‘worked’ to ‘fix’ me; and it was only until I realized that I did NOT need fixed, that the realization became a beautiful and wonderful gateway to finding my tribe, my community and my support. 

With being Autistic comes masking.  Some of you (probably Neuro-Typical) are eye rolling and thinking “But we ALL mask, don’t we?  Put on different faces for work, school, home, etc?”  This. Is. Not. The. Same. 

I masked because asking for accommodations regarding the brightness of lights, sounds and smells seemed so outrageous; no one else asks for this, why should I?  (Undiagnosed).  I masked because asking someone to repeat instructions and/or send them in written form seemed to express weakness, why couldn’t I just ‘get it the first time, we already went over this?’  (Undiagnosed).  I masked because needing to take a break between completing tasks (even if just for one or two minutes) was seen as being unproductive. (Undiagnosed).  I spent my whole day masking at work, then had to summon the strength to parent and advocate for two Autistic children.  How could I be a successful advocate if I, myself, were to claim the title of Autistic?  How could I ask for accommodations in IEP meetings?  I mean, I functioned, didn’t I?  I went to work, I bathed regularly (mostly), I didn’t openly stim, I didn’t wear ear defenders or have stim tools.  I was ‘Normal’, intelligent, well-spoken and could maintain eye contact. 

Except when I could not.  Except when I had melt downs (argumentative).  Except when I fought hard for injustices (unreasonable).  Except when I broke down in tears because I was not being heard, no matter how hard I fought to explain my reasoning (too emotional/sensitive). 

Then came the labels, all the wrong labels.  “Weird” “Quirky”  “Strange sense of humor” “Thinks she’s better than all of us”. 

They did not, could not see that I see the world in the big picture.  It is what makes me great as an employee (being able to anticipate needs, preventing fires rather than putting them out, empathetic to other’s needs).  It is what led to many endings to employment (often late or absent due to complete burnout, takes things too personally, doesn’t understand boundaries). 

No one ever thought to ask me why I did these things that led to the end of employment.   The mask was firmly in place.  I never appeared ‘too weird’, I never appeared ‘disabled’. 

Hear this.

I have spent the first half of my life disabled.  No one, including me, ever knew.  Just that I was ‘different’.  But different does not get you accommodations.  Different doesn’t get you understanding or acceptance.  Different doesn’t get you the opportunity to share your intelligence and knowledge of all your specializations in ways that will help a company. 

Different gets you ‘othered’.  It gets you shut out of the group gossip sessions (most times thankfully).  It gets you shut out of promotions.  Different is tolerated, until it isn’t.  And it is not illegal to discriminate against Different… unless you have a formal diagnosis and/or recognize and disclose your disability.

For my fellow Neurokin that struggle with this currently, that are able to navigate this thing called life by treading the waters, trying to keep your chin above the surface until you can’t only to be dragged back down by the current, I hear you. I see you.  I need you to find the strength and claim your awesomeness, your contributions, your strengths and your magic.  I need you to take off that mask and let the world know that while you are ‘different’, your differences are in fact a disability that needs accommodations to make you able to be the most wonderfully fantastic human you can be.  “Be Not Afraid”, take a deep breath and find that sandbar of fellow Autistics that will lift you up and hold you while you float until you are able, once again, to navigate the waters.  Allow yourself grace and humility, know that not even Robinson Crusoe could get everything done by Friday.  Find your voice and use it in whatever way you communicate.  As scary as it is, the self-discovery is the first step towards making the rest of you’re the best of your life.  Your sister in strength.  Samara.

On School Trauma

I promise that once you accept that your child’s mental health status is more important than their academic achievements, you will ALL succeed and be prosperous in every way. 

For years, I could not understand why I was so triggered by my boys’ difficulties in mainstream school.  The answer was obvious as I, too, struggled in school.  So much so that I ended up dropping out my senior year in high school and achieving a GED certification.  I wish I could say that my parents were fully supportive of this decision but of course they were not, there was simply no other choice for me.  It really was school or death.  When one of my boys told me, in his freshman year of high school, that he would rather die than go to school, I took it seriously.  Because I remembered feeling that way, too.

About to go down this rabbit hole so hang on readers…. TW school, shaming, guilt

Since I could remember I could intuitively ‘pick up’ on things, vibes in the room, learning more about a special interest, heck I was reading before Kindergarten and took great delight in proper diction and pronunciation of words and my little known use of grammar.  It was not until I got into school that I was labeled as ‘different’, ‘defiant’, ‘distracting to the other students’, ‘attention seeking’.  But I was ‘so smart!’  I was just ‘lazy’, ‘wouldn’t put forth the effort’, ‘didn’t double check her work’.  I had no idea how to verbalize it at the time but now I would say “It took everything within my power to just DO the work. Once I am finished, when I have literally answered all the questions or written all the things and see the end of the paper, then I am just done. I have no energy left to double check.  And I may not know that I have gotten an answer wrong and am relying on YOU, teacher, to help me understand my strengths and weaknesses. But can’t you tell me in a different way?  Can’t you see where I need help and offer it rather than just make a big red X and leave it to me to figure out?” 

This a very big thought for such a little person, don’t you agree?  And wouldn’t it be wonderful if educators in 1974 knew that their ‘disruptive student’ might need different types of supports and accommodations? 

My mother knew.  But it was what she did next that shaped my school based trauma.  She decided that I ‘needed help’.  And she would, and did, go to the ends of the earth to find me that ‘help’.  She listened to the doctors, she sought out natural, homeopathic remedies and diets (have you ever eaten Carob Chip Cookies? Or peanut butter and jelly on rice cakes?  I have…)  All of which added to the trauma of someone else thinking I needed help, when what I really needed was to be left alone to pursue my areas of interest with guidance and support, and why on earth couldn’t anyone else see that?  The fact that no one else shared my thought process (most likely because I didn’t even know it myself consciously), made me feel all the more ashamed and weak.  Who was I to presume to know what best I needed?  And when I was able to verbalize it I was declared argumentative, difficult, self-centered, unrealistic.  After all, don’t I have to make it in the Real World?

I was inundated with ‘help’.  Tutors.  Change of school in 4th – 5th grade.  Psychologists. Psychiatrists. Group therapy. Individual therapy.  She meant well, really, she did.  But my mother caused me to believe I was less than, when the words out of her mouth were that I was wonderful, talented, beautiful, so smart IF ONLY… I applied myself, tried harder, was more careful.  I wish my 6 year old self would have screamed “FUCK YOU I AM TRYING AS HARD AS I CAN AT THE MOMENT BUT THESE CLOTHES ARE ITCHY AND I NOTICE EVERYTHING AND IT ALL SEEMS IMPORTANT AND I DON’T TRUST MY OWN JUDGEMENT RIGHT NOW AND I REALLY CAN’T DO ALL THE THINGS YOU ARE ASKING!”  But of course, I couldn’t do that.  So after being well trained in the behavior/reward system, I found myself masking all the time in order to please everyone.  I was so burnt out by the end of the school day that I just wanted to rest, but no, my mother made sure I was enrolled in extra-curricular activities.  Some of them were wonderful, horseback riding for one.  I felt an immediate connection and enjoyed it so much. I felt to free to just be me.  Some of the others, not so much. Tutoring, therapy, group therapy. I hated being the center of attention and tried my best not to talk.   Which led to several misdiagnosis and wasted therapies.  But again, she tried.

What strikes me as humorous in all this, is the fact that my mother thought she WAS looking out for my mental health.  But rather than remove the trigger (mainstream school), she tried to find me help in ‘dealing with it’ and changing behaviors.

So parents, teachers, politicians, everyone.  I give you this.  TRUST your child.  BELIEVE in them.  If they say a thing is too hard, whether by behavior or direct communication, be still and LISTEN.  Ask for their input on what would help them to feel better.  And if you need to, in the moment, let them be.  LET THEM BE.  Your child will feel that you understand them and most importantly, respect their way to self-regulate.  Allowing them the time to do this, and to come to you when ready, will create a feeling of safety and acceptance.  From there, will become the moment of self-realization, the knowing that they will never ‘fit in’ but will be able to find their way in their own time.  When we do not measure success by standardized accomplishments but rather by individual goals realized, we will have finally realized the individual’s full potential. 

On understanding yourself

I just realized something.  And wonder how it could have gone unnoticed until this time.  Let’s say I have 6 spoons left.  I had planned on using those spoons for a shower and hair wash (believe me it will take all 6 to do that!)  Then a friend sends me a message and it sends me down a rabbit hole.  I won’t go into that rabbit hole here but suffice it to say it was not a pleasant rabbit hole but it was worth investigating.  I’ve now used 4 spoons, and am left with 2.  There are still some ‘have to’s left for the night, which will take both spoons and maybe borrow one from tomorrow.  And that, my friend, is why I cannot shower sometimes.  There are times I have had to push through in order to stay clean and hygienic, but sometimes that involves a bird bath and dry shampoo.  Spoons vs. rabbit holes.  I wish it didn’t happen.  But it does.  And I simply cannot control it.  And I do not like that I cannot control it, but I like that I KNOW I cannot control it, which will lead me to learn to help myself when I run out of spoons.  And how to maybe, possibly, make more.    It sure beats being called lazy, self-centered, and that I always looked for the easy way out.  For me, finding the easy way was a necessity as I had not understood the instructions in the first place, but I didn’t dare tell anyone that what I heard was a droning sound and not words.  I found a way to make the thing work for ME.  I struggled with fine motor grasping skills (still do) so handwriting was a huge issue, as was placing things in packages, envelopes or boxes.  I can manipulate well; I love to do the prep part of cooking (chopping, slicing and dicing) and play piano well and type 95 wpm.  I can perform repetitive tasks excellently within a short time of learning the order of things.  I also had a hard time when I was young learning, exactly, how to shower.  It was hard to get my fingers through my coarse, thick, tangled hair and so it was hard to rinse all the shampoo out.  My parents were very old-fashioned so when it came to helping me bathe I probably could have used another year or so to be sure I was doing it right.  But they thought that somehow, magically, by the age of 7 you were to have mastered the art of cleaning your body on your own.  And the shame of needing to tell them outweighed the telling, so I winged it.  Eventually, I learned what worked for me.   I still shower the same way I did at 8.

I Get It

I Get It

One day, as my son was having a meltdown of epic proportion, I found myself suddenly calm.  Almost tranquil.  A feeling of familiarity washed over me.  “I know this feeling” I thought to myself.  “I recognize this pent up rage, the out of control I just can’t cope anymore” frustration that would drive me to uncontrollable tears, which no one else could understand.  Least of all my parents .

Little did I know then that it wasn’t rage, it was fear.  It wasn’t anger, it was the “too much”.  I WANTED to do what I was asked to do (my homework, laundry, pick up the towels off the floor) but I just didn’t know how to start, or I forgot, or everything felt like it had to be done right then and I hadn’t even begun to do anything so why bother?  I call it now “The Overwhelms”.

I did not know how to differentiate “everything” from the “to do” stuff.  To me, it ALL had to get done, all at once, regardless of circumstance (buzzing lights, smells, sounds).  Even thinking about it would cause me to shut down.

So I learned to “fake it till ya make it”. I created elaborate scenarios in my head before beginning a task that I did not want to do.  I talked myself through it. Showers, for instance. “OK, first I need to turn the water on hot to heat up, but if I leave it there I will burn myself so I have to adjust it after I brush my teeth.  Clean top to bottom.  Towel by the shower so I can dry my face as soon as I wash it.”  No one knew my secret.  No one knew the effort it took just to get dressed in the morning.  And then, just when you think you’ve got it sorted out.  Then comes Puberty.

Ahh, puberty.  Where my boys are now.  The age when the spiral began for me.  No wonder I am triggered, agitated, and all in my feelings.  I knew I was different from the other kids but had spent so long pretending not to be.  Surely they would see through my mask now?  Where did I fit in? Who was I?  Was I who I was pretending to be or was I now someone else?  School changes, friends moving, body changing and hormones!!  I could not, was simply not able to, concentrate in school.  I will not bore you with the route my loving and well meaning mother took but suffice it to say it was not really helpful.  I clung to meaningful friendships in lieu of trying to fit in with the “popular” crowd.  I was a a misfit and for one teensy glimmer I was proud.  There were others like me.  I was part of a group.  But, I was still putting on that mask….

When the mask gets too heavy

There were times, for me, when the mask got too heavy.  When I was unable to function.  The doctors called it depression, or major depressive episode, or pervasive depressive disorder.  The funny thing is, I didn’t FEEL depressed.  I felt like a trespasser, afraid for anyone, even my closest friends, to find out how much of a struggle it was for me to be social, (even though I was gregarious).  How even the simplest thing like being able to take notes during class was a major mystery to me.  Do I use a pen or pencil?  Oh god there are different colored pens? Should I use a Spiral or three ring binder?  One for each class or just one big binder?  What is due for homework?  Where do I put the handouts?

After being praised in my early years for being “so smart”, being labeled “gifted”, how in the HECK was I supposed to ask for help with what was seemingly coming second nature to my classmates?  How did other people know how to organize and prioritize things when I could barely work the zipper on my backpack?

So when my son had a meltdown about how much he hates school, how he can’t stop thinking about bad thoughts, and how he wants it all to end, I get it.  I am sensitive to his needs and ask the important questions regarding self harm.  I tell him how much I love him, and how, even if he doesn’t believe it, Mom had the same problems when she was his age.  I tell him it is ok to let it out when it gets to be too much.  He knows I am here to help him figure out what to do next and to help him learn how to do things for himself.  Above all, I don’t judge him.  I put no expectations on him.  I am no longer looking for him to reach milestones or conform to what society deems normal for a child “his age”.  I will be his guide, his teacher, his mentor, his biggest fan.  I will help him in every way I can to be happy and feel accepted just as he is.

Because I have been there, and I get it.



On Empathy. And Love.

Who says kids with Autism aren’t empathetic?  Today I struck up a conversation with my twin boys in the car, where I’d have their attention (or most of it anyway).  Some schools do an end of year or spring dance.  I am not sure if their middle school does or not, but I wanted to do a kind of pre-game check. “Boys” I said.  “If your school had a dance, who would you want to ask to go with you?”  This was met with a couple of groans and “Oh Moooom… do we HAVE to talk about this now?”  I thought a minute; were they overwhelmed, trying to relax after school?  Did they seem stressed?  But they seemed happy and calm, so I persisted.  “Seriously boys, who would you ask?”  To my surprise, my usually less verbal son spoke up first.  “Well I’ve been thinking about this a long time Mom.” He said.  “You see, there’s a lot of risk involved.”  I expected him to finish with the risk of rejection, of being told no, or even worse, teased.  What popped out my son’s mouth next kind of blew me away.  “You risk jealously.  Like, if you ask someone, but another friend likes her and you didn’t know it, you run the risk of making them jealous.”  I was silent for a few beats.  Let’s face it, there on Maynard Road, waiting to turn left at the light, my son just expressed that A: He was thinking of others before himself and B: He was able to verbalize it.  After I caught my breath, I decided to push a bit more.  “But honey, there is another risk too.  There is the risk that if you don’t ask, you will never know if she would like to go to a dance with you.  Maybe she really wants you to ask her but is just too shy to say anything.”  He thought about this for a minute and then agreed, that was indeed another risk.  I also brought up rejection.  “She might say no, though.  We can hope she would do it nicely..”  “Yeah.” He said’  “Like she should say ‘No but thanks for asking’”.  “Yes, something like that would be nice” I said.

I left it at that.  I am so glad I opened this door.  I want my boys to know that although they will always be my true loves, I want them to discover it for themselves.  Crushes, puppy love, deep, brooding love.  I want them to know that I want them to put themselves out there for others to see the incredible light shining through them.  I want them to be confident that I will be there for them and that they can talk to me if they need or want to about anything.

But most of all, I want them to Love, and be Loved.

On Paying Attention

On Paying Attention

As a parent, are you providing what YOU think your child with Autism needs, or are you projecting  what the books and pamphlets tell you they need?

At one or more points of my life, I have been guilty of the latter.  Especially when they were young; toddlers, non-verbal.  At the time I liked to call it Intuition, but now, I am second guessing myself.  How much of what I did or didn’t do to help my sons was based on my perception, and how much was based on what I’d read?  Were bright lights and noise distracting or soothing?  Did they need to be swaddled or loosely clothed?  And how many preconceived notions did I project onto them?

I was recently watching an episode of the Good Doctor, which featured the loving, well meaning parents of an Autistic young man who just don’t “get” him.  I am sure they could hold PhD’s in Autism based on their research, but when it comes to calming this particular patient it seems that only Dr. Murphy is able to do so, by using techniques that did not occur to the parents.  (Dr. Murphy is an autistic surgical resident that is the lead character in the series.)  It seemed that the young man’s parents projected the results of their research onto their son, and in doing so missed what is really important; that each person with Autism IS an individual.  To assume anything less is a grave mistake.  Yet it is one that as parents with newly diagnosed children we often do.

Take my twins for example.  One is a “seeker”.  He craved swaddling, being held close, cocooning in his blankets.  As young as 5 weeks he was scrunching himself into the tiniest ball imaginable.  His brother, on the other hand, screamed bloody murder when he was wrapped up.  He preferred his bouncy seat to physical contact.  He liked the football carry rather than being clutched close to the chest.  To this day, they are opposites.

All of this is hindsight of course.  At that time I was an exhausted first time mom with TWINS no less.  I had no clue what I was doing.  The boys taught me each of their likes and dislikes, what was soothing  and what caused wailing. The wipes warmer was my best friend.

Flash forward to 18 months later.. I began to notice the boys “disappearing”.  All the typical signs were there; not reaching milestones while losing some at the same time.  Not verbalizing or pointing.  Avoiding eye contact.  Obsessive/repetitive behavior.  I was pretty sure as to what was happening so the diagnosis was not a surprise to me; although it took 5 years in coming.  (Autism was not given as a diagnosis until the age of 5 back then.  Until then they were “Developmentally Delayed” and “Pervasive Developmental Disorder Not Otherwise Specified.”)  Never mind; they still qualified under those diagnoses to receive therapies they needed.

This is where the journey of projection can begin.  I read.  I bought books and looked online and joined bulletin boards.  I compared and tested and began trying techniques.  I would play soft music, keep rooms dim, limit screen time.  Some of it worked.  Some didn’t.  Ashamedly, I began to expect less of my sons.  I made a HUGE deal of each milestone, each new food tasted, and each brief measure of eye contact.  And I allowed them to not push their limits.  Did I infantilize them by not forcing them to do things outside their comfort zone?  With twins on the Spectrum, who struggled with poor motor skills and even worse listening skills, it was sometimes a necessity.  It was much quicker to tie their shoes for them, to help them dress and to pack their lunches for them.

What was I missing, though?  What joys, interests and insights, were lurking behind my logical research and over thinking?  Did I notice their joy in watching the way the sun danced across the blinds, causing the light to shine on the wall?  Did I notice the way the communicated with each other, coos and giggles and pushing up against one another?  Some of it, yes.  But I am sure there are some I missed… by being a bit too engaged with my fervor for learning how to help them.  .

Eventually, I began to get busy with life.  I went back to work, and I thought I understood what was needed by my kiddos and happily obtained it for them, paying less attention to what they were and weren’t doing, and just getting to know them.  I learned that Evan loved bath time and being naked (he will hate me for this later.. lol!)  I learned that Eric liked to sit in the very corner of the couch and would wear a hooded shirt or sweatshirt nearly all the time, regardless of the weather.  I learned they both loved animals and laughed a lot.  I GOT TO KNOW MY KIDS.  I learned that Autism is not something that needs a cure.

My kids NEEDED Occupational Therapy.  They struggled with fine motor skills, which I did not realize, and their OT helped them tremendously.  They NEEDED Speech therapy; to learn how to form words correctly and, for one of my boys, to help with a bit of a stutter.  Some may say “Oh but if you accept them then why are you trying to ‘fix’ them?”  I felt as if I were giving them tools.  If a computer is acting up but not completely broken you wouldn’t just say “Oh I accept this computer even if it doesn’t act the way it should and could cause problems down the road like losing all my tax records.”  No.  You fix it as best you can.  But suppose, even as your computer is not acting right, it displays the most beautiful colors and patterns and brings you joy in ways you never knew.  What if it suddenly starts playing the most beautiful music, or computes the exact way you should file your tax return?  You would still want it to turn on, you would still want to be able to press all the keys, and for it to respond back to you in a reasonable manner.  But would you fix the colors, the lights, the music, the joy, even if were perceived as “different”?  Or would you sit in wonder, taking in the sights and sounds of a world that was alien to you, but knew was instrumental in making your computer what it was meant to be?

On Acceptance

This is the post excerpt.


On Acceptance

This is a photo of my twin teenage boys.  They are Autistic.  A woman who does not know me or my sons took this picture and captured the essence of Autism, and my boys, perfectly.  I hope these words will help explain it further.

In this picture, they were at their first dance ever.  They chose not to dance.  Sure, there have been dances held at their Middle School before, but they have never expressed an interest in going.  Here, they are comfortable, they are content, they are not dancing, and they are eating Broccoli.  Raw.

A diagnosis of Autism is a hard thing to accept at first.  Although you know something is going on, and you have a good idea of what it is, when the diagnosis comes it is soul crushing.  It is a rollercoaster wave of emotion, dropping your heart one minute and struggling to climb the hill the next.  Most children are so young, you will wonder if they will ever speak.  If you will hear them say “I love you Mom” or even “Momma”.  Then, you go into overdrive , finding therapists, teachers, and schools, jumping headfirst into the world of IEP’s and Behavior Plans.

This story is about the next phase, acceptance.

This is about growing comfortable with Autism.  At first, I grew more afraid with every self-injurous behavior, every meltdown, every obsession.  It is about figuring out what the triggers are and growing comfortable with giving warnings (5 minutes ‘till time to get dressed).  Knowing which 5 foods your child will eat and ensuring that they will be available at every restaurant you go to.  Planning a strategy for when you run errands, working the timing around favorite shows.  Acceptance is the slow, rambling ride that takes you from terror to contentment.  Secure in the knowledge that only the Chocolate Covered Yellow donuts will do.  Reveling in the smiles when you get the peanut butter to jelly ratio just right.  Understanding that the smell of bleach will drive him insane so doing the whites in the laundry while he is at school.

So when my sons are at a dance, and they choose not to, that is ok with me.  I get it.  And while I am learning to push them out of their comfort zone,  I am confident that I know my sons well enough to know which battles to choose.  I am just thrilled that they chose to go to a dance with other teens!  The tools they have in their arsenal allowed them to retreat into their world, which at this time was the fireplace, with their broccoli, when they were overwhelmed.  It sure beats the head banging, arm biting, flailing meltdowns.

I am beyond proud that my boys know how to calm themselves.  I hope that next time, they choose to dance.  I want them to dance.  I yearn for the day I that I can dance at their wedding(s).  But I accept this for now, as this is where they are.  I choose to meet them there.  And to slowly, carefully, with as much love as I can muster, draw them out, bit by bit, until they can meet me at least halfway.