Opposites of the Spectrum

When M.o.C.h.A. eight graduated high school she would have told you that in ten years she wanted to be living in New York with her high school sweetheart working in advertising.  As a quiet and subtly rebellious teenager, drawing was her passion and what she envisioned doing for her life.  But as with most, life had other plans for her and her dreams changed.  An unplanned pregnancy at nineteen left her and her now husband with no choice but to provide and take on the responsibility of raising a baby together.  That meant entry level jobs, securing a small apartment and since all of her family lived hours away, it left them to do this all alone.

M.o.C.h.A. eight delivered a healthy baby and soon after her and her husband were blown away with how incredibly smart this little girl was.  She was doing flashcards at just one year old of shapes and colors and numbers and letters.  Her mind seemed to be working and learning exponentially faster than most and she was hitting all milestones on target each month.  The exception was speech.  Something was just a little different about the way she spoke and then around two or three years old instead of actively potty training like a “big girl” she started fecal smearing.  There were times she would become so frustrated or simply bored and she would sit for extended periods of time tearing paper.  Whatever paper was around or whatever she could find; just tearing paper over and over and over.  Pediatricians noted how verbal and intelligent this little girl was so autism was never on the table as far a diagnosis.  Instead, they referred M.o.C.h.A. eight’s daughter to speech therapy, occupational therapy for tiptoe walking and behavior therapy for her frequent meltdowns to help manage the biting, drooling and kicking.  The combination of therapies helped tremendously and she was finally potty trained at four years old.

From her kindergarten to seventh grade year this little girl was in a church-based private school and although she did exhibit challenging behaviors at times the teachers were able to redirect and help her seeing as academically she was so advanced and overall able to handle a classroom setting.  During this time new problems arose as she reached puberty.  As hormones fluctuated so did her mood swings, emotional highs and lows and stimming began full force.  Around fourth grade she began to rock back and forth and flap her hands when she was excited or happy which meant friends became scarce and bullies became many.

You will have to envision for a minute what a “neurotypical” fifth or sixth grade girl thinks about, how she talks and interacts with her friends and the world.  This is the time of periods and boys and puberty and just all the stuff that as a parent probably make up your nightmares.  They make up mine.  So if M.o.C.h.A. eight’s daughter enters this kind of conversation and starts talking about what is on her mind, like the last Nickelodeon cartoon she saw and the book she is reading, oh I’m sure you can imagine the dreaded preteen eye rolls she gets in return.  Or when the class project is to write a poem about something that inspires you and the eighth graders, highly influenced by social media and current events, are writing and reading aloud their poems about transgender rights and gun control and politics.  Then this little girl reads proudly while rocking back and forth about how much she loves the zoo.  What do you think she looks up to see on the faces of her peers?  Acceptance?  Belonging?  Approval?  Sadly, no.  Her academic intelligence is so drastically paralleled by her child-like social behavior that her momma is always on the defense for her girl and worries constantly about things you may never have dreamed.  As her daughter gets older – eighth grade, high school – will a boy ask her to a dance just to make fun of her?  Will girls conspire to exclude her?  Will she ever make a true friend that will allow her to be herself?  When and where will she find “her people”?  As this social component of her life began to be troublesome for her mom and as the flapping and rocking escalated she was referred to a psychiatrist who diagnosed M.o.C.h.A. eight’s daughter with Asperger’s Syndrome (that medical term has changed recently but for the sake of simplicity we will use Asperger’s Syndrome in this blog post).  She was given an IQ test which showed high intelligence but yet she has no concept of how to read people’s faces or know their intentions.  She LOVES two things the most; books and Jesus.  She tells her mom that books provide her the ultimate escape where within minutes she can be anyone and anywhere and really see and experience the world through characters.  And Jesus?  This sweet thing can’t talk enough about Him and His love and compassion and understanding for others and His defining inclusivity of all people.  The broken, the different, the rich and the poor, people of all backgrounds and color and status – just like autism – Jesus holds no prejudice.  Again, do you think the typical seventh or eighth grader in her school looks at her with love and hugs when she interrupts a teenage conversation about Kylie Jenner’s new lipstick line to talk to them about Jesus and His love and miracles?  Yeah, no.  All she gets are eye rolls, fake smiles, shoulder shrugs and a group of girls that ever so slightly start to scoot away.  She knows her diagnosis but has a very hard time understanding the idea of the “spectrum” mainly because her brother, M.o.C.h.A. eight’s son, is also on the spectrum – the whole opposite side of the spectrum.

Yes.

M.o.C.h.A. eight had a baby son when her daughter was about three years old.  He was the perfect baby.  No crying, no fussing, no eating problems, but also no talking.  None.  He would point and grunt and around four years old what used to be eyes that were bright and round and alive to the world, went dark, lost and quiet.  He was diagnosed with speech delay and autism spectrum disorder, pervasive developmental disorder not otherwise specified (ASD PDD – NOS).  A pediatric neurologist was quick to prescribe a very high potency atypical antipsychotic medication without any real observation or evaluation and M.o.C.h.A. eight, after instinctively getting a second opinion, tore it up and never went back to that doctor again.  Due to his special needs and diagnoses, her son was not able to attend private school and so his parents had no choice but to enroll him in public school.  At five years old and still not potty trained the public school Life Skills classroom was not equipped, not trained and not prepared to care or educate this little boy.  M.o.C.h.A. eight was constantly called to pick up her child because the teachers and paraprofessionals “could not handle him”.  They would call and tell M.o.C.h.A. eight that they had other students to teach and her son was so disruptive he could not be in the class for the remainder of that day.  He would throw chairs, kick, scream, bite, and showed extreme defiance.

Um … Yeah.  You see, it’s actually not that complicated.

Pretend with me for a minute.

What if I put a book in front of you right now and told you to please read a whole chapter on neuroscience and in ten minutes be prepared to explain in detail to me with full diagrams the function and context in which the human brain processes information and regulates behavior.  Include all of the pathways, chemical processes and please also correctly reference your resource.  Ten minutes.  GO.  Oh wait, is that too hard?  Hold on, you’re not gonna do it?  OK NO recess for you.  OK NO snack time for you.  Now you feel dumb and hungry.  People, if you did this to me I would eventually bite you too!  SO this is exactly what this poor kiddo felt like when he was given high level fractions to complete in a Life Skills classroom when he couldn’t even identify numbers!  He would escape the classroom even when three adults were supervising and M.o.C.h.A. eight would get calls that her son had wandered and was found in the parking lot among the buses but you know, “Don’t worry because he is OK”.  M.o.C.h.A. eight fought the district for a shadow or a one-on-one aid with no luck.  Instead, they told her that what her son really needed was to learn to be independent and work out his issues without the help of an aid.  Translation: we do not want to pay a paraprofessional to help only one student when we have to fund so many other programs for students who don’t have special needs because it makes our district look crazy amazing to the world and gives us more funding.  After all of his significant delays he was approved by the school district for only ONE session of occupational therapy every NINE weeks so that he could learn to use a mouse.  SERIOUSLY?  Lord have mercy.  Then speech therapy was only provided at that school in group settings which was exactly what he DID NOT need.  So of course each speech session resulted in problem behavior which meant he was removed from the session which meant no speech therapy.  I mean come on!  If a child is in a self-contained special education classroom and you always have to call his momma to pick him early because he is SO disruptive to others, WHY ON EARTH would you assume he will function just fine in a group setting for speech therapy that for him is hard, requires concentration and focus and one on one attention?!  M.o.C.h.A. eight was crying daily, frustrated, lonely, scared and more importantly she knew she was fighting a fight she could never win.  She eventually was forced to withdraw her son and enrolled him at a private pay charter type school that was accommodating several students on the spectrum.  Classes were usually held outdoors and the school used open atmospheres and animals incorporated into learning.  He loved it.  He was finally potty trained at seven years old and has become relatively verbal.  He has what M.o.C.h.A. eight refers to as Peter Pan syndrome.  He is a big strong boy but is insistent on ordering from the child menus at restaurants and tells his momma that he is a “little boy” and has no intention of “growing up”.  Even at almost five feet tall and a good weight he will only ride tricycles and still lets his momma hold him and love on him.  He rocks and flaps and stims often but usually out of joy and fun.  Actually M.o.C.h.A. eight told me that she has asked both her daughter and son about stimming.  She asked them why they do it.  What does it feel like?  How does it help?  They both answered the same.  For both of them it was a sign of happiness, joy, over excitement, in response to thinking about a funny cartoon or a happy event.  It’s as if at a moment’s notice they are transported back, a mental escape, and they can’t help but respond physically.  They are so caught up in the moment it’s like they are not present.  They are fully enthralled in that other thing and their body responds.

OH wait.  Did you think I was done?  There is a third baby in this story.  Another baby girl.  She is not on the spectrum but has dyslexia.  She also has a large facial birthmark and scar that M.o.C.h.A. eight knows will be a challenge to her self-esteem, confidence and relationships .

Three children.  Three different challenging lives that will each need love, unique support, and constant understanding.

Here is a little Q&A with M.o.C.h.A. eight:

In what ways do you feel loss?
When I had my first daughter I wanted her to be an athlete, or a cheerleader or actually I just wanted those to be options for her.  They aren’t options.  She has a physical abnormality with her hamstring muscles and she has to wear inserts to walk which make her a little more clumsy and uncoordinated than most kids.  My son, well he also won’t be able to participate in “regular” extra-curricular stuff and really I just wish they had the option to do whatever it is they love or wanted to try.  That is a hard reality to accept and I feel loss for them.

What did you need this whole time? When your kids were born and when the diagnoses came?
My family.  No one understood me.  No one got it.  Everyone would tell me I was overreacting or maybe it was me doing something wrong or maybe something I did wrong when I was pregnant.  I needed grace from people who truly understood me.

What is your biggest fear?
Who is going to be kind to them when I’m gone?  What is going to happen when I leave this world?  Who will care and understand them like I do?

How do you cope?
Exercise.  Crossfit.  It is one hour a day when I can focus on myself, my breathing, my body and my outlet to release all of the stress and worry for the day.

What do you love most about your children?
My oldest, she is so positive.  She finds the good in everything.  She loves everyone for who they are just as they are.  She loves Jesus and everything He stands for which is why I think she so easily understands and sympathizes with people.  My son, well oh my God everything.  Ha!  I love all of him.  I love the way he loves me and kisses me and the way his hair smells.  He is so kind and creative and giving.  He is that kid that is eating his absolute favorite snack in the whole world and offers you the last bite even though he so desperately wants it all.

Explain a time that your children weren’t understood or when you were judged as a parent?
We were at a restaurant for lunch one day.  My son was done eating and decided to sit on the floor next to our table and began stimming.  He was happy, smiling but flapping and making noises.  We all continued to eat and every once in a while I would look down at him and smile and put my finger to my mouth like “Shh”.  He would smile back and quiet down but quickly would forget and be loud again.  Well, there was an older couple a few tables down that weren’t having it.  They stared and whispered and shook their heads.  Then all of sudden the man turned around and shouted at my son, “WOULD YOU JUST BE QUIET!”  We all looked back at them stunned.  Then the woman yelled, “YES ALL THAT MOM IS DOING IS PUTTING HER FINGER TO HER MOUTH TO SHUSH HIM WHICH IS OBVIOUSLY NOT WORKING!”  I am still so mad at myself for not saying anything.  I didn’t say a word.  None of us did.  And my son looked back at me and kept stimming! HA!

What do you need right now?
Understanding.  Acceptance.  I need people to understand that my kids are not “acting up” in public or being brats.  They are not going to change, so maybe people need to change.
____________________

I have two things to say before I close this special post.

First, some of you may be wondering, well Lisa you are trying to be brave this year so what would you have said to that older couple that day if that happened to you?  That’s easy.  I would have made them OVERWHELMINGLY UNCOMFORTABLE with my KINDNESS.  I would have sat my butt right next to their table and asked them if they had children or grandchildren to which they would have probably said yes.  I would then have asked if any of their children or grandchildren had autism.  I am 99% sure they would have said NO.  So then I would have told them that I was so sorry for them.  I would have genuinely said with no sarcasm in my voice that I am so sorry that in their whole life they never got to experience the gratitude, patience, grace and love that can only be taught through a child with special needs.

The second thing that I want to say is that if right now you feel sorry for M.o.C.h.A. eight and are thinking , “Well poor lady but there is nothing I can do” you would be wrong.  If you have children, you can do EVERYTHING to make sure they one day will not be the eye-rolling, snickering teenager.  I am saying this to myself too today.  Remember that I too have children that are not special needs and will need these lessons always.  We have to teach our children to be KIND to other children.  Get creative.  Give them scenarios.  I learned that I can’t just say each morning, “Be kind today!” What does that mean to a kid?  I have to SHOW THEM.  I have to ask them stuff like, “Hey June, what if a student sat next to you and smelled really bad like they hadn’t taken a bath?  What would you do or say?  Let’s talk about ways you could be kind and not embarrass them.”  What if a child looks different, talks different, acts different, what if they say this or what if they do this – give them examples – talk through it as a family.  Also don’t make your kids feel bad when they mess up.  It is natural and expected to get caught up in cliques and they will probably not be kind to a kid at least several times but use those times as lessons.  All kids deserve grace, time to comprehend and undivided attention when teaching important lessons whether they have special needs or not.

Let’s work together to make our children kind so that one day M.o.C.h.A. eight’s girlie will find her people.