In Memory of Alex

It's been a reflective week for me in thinking about being the parent of a special needs kiddo.  I posted on the fb page the link to the story about Alex Spourdalakis .  Alex was killed in his home in an apparent murder by his mother who wrote details of the murder in the note she left.  Alex's mother and caregiver attempted suicide by taking pills, but were unsuccessful.

Alex's mom made national news when she claimed that her son was being mis-treated in a Chicago hospital and pleaded for help to get him to a place that could care for him better.  She contacted Autism advocacy groups who went to Chicago to speak on her behalf.  They found a tired, worn-down mom who was desperate for help and answers.

I watched this story unfold a few months ago, and was shocked to learn of Alex's death this past week.  My facebook status update read :

I've been following this story for awhile when Alex made national news for being restrained and chemically sedated in a hospital. And now the end to the story breaks my heart....for so many reasons. The severe level of desperation is there, and it's real. When I talk about isolation that parents feel who are trying to care for an special needs child,.....this is where it can lead.

I was wrong.  Really, really wrong.

Murder is NOT where it leads.  Alex's Mom did something so deplorable that it's difficult to even speak about.  Not just the murder of her son, but the fact that she refused help.  Alex's father tried to help, the hospital tried to help, alternatives for care were given.  However, Alex's Mom believed that only she could provide the care her child needed and refused any form of help she could get.

I believe her desperation was real.  I believe her exhaustion and her inability to think clearly were real.  And I believe that what she did she justified so easily in her mind that the thought became "normal."    I believe she was swimming in a sea so deep, she was never going to emerge.  And when people kept tossing her a life-line she erroneously thought she didn't need it.

The Autism community is up in arms about this story.  Some have gone so far as to say "understandable."

No.  Absolutely NOT.  Under no circumstances was it/is it/will it ever be alright to murder your child in cold blood.   She planned it.  They got the pills.  She slit his wrist so deep she almost severed his hand.   She wiped the knife clean when she was done and put it back in the block.   Let me say that again.  She wiped the knife clean.  The caregiver that was a part of this also killed the family cat so that it "didn't have to go to a  shelter."  Never was this Alex's fault, and never is anything like this "understandable."

It's taken me a week to figure out what bothers me about this story.  Yes, without a doubt, the murder of Alex was gruesome and should never have occurred.  These two women did something horribly wrong, and there is no excuse.  This is not what Alex deserved in any way.

Here's what bothers me.... the other stories that will go un-noticed.

There are many (more than you realize) parents out there who are at the end of their rope.  The stress and constant care that a special needs child requires can be daunting and more than overwhelming.  I've watched it unfold in the care I give to families.   Chronic illness comes into a family and destroys it from the inside out.  Relationships are strained, marriages collapse, family dynamics are shattered.   I'm not sure that the community or the services available help parents and caregivers in a real way.  (For the record, I don't think the system failed Alex's Mom....I think she chose to ignore it).

My Mom and I had a discussion this week about this subject and I will share what I wrote to her in an email.

" I hear it a lot from parents who have special  needs kids and they grow up to be special needs adults.  It's a fear of mine as well.  It's fine to let Nea pee in a diaper now...she's 3.  That's going to not be okay when she's 7 if she isn't able to do it.  And what happens when she's 16, 23?  There's a special needs woman who takes swim lessons where we do.  Her mother (has to be in her 70's) is there with her all the time.  She helps her in the shower, she blow dries her hair, etc.  It's touching and scary all at the same time.  No one loves our kids like we do....and we worry constantly about who's going to watch out for them if something happens to us or when we are gone.  Building Nea's network has ALWAYS been my priority.  And we are lucky.  Not every parent has that network to lean on."

And there lies the crux of the matter.   The network that parents need is crumpled and fractured or may not even exist.  Some special needs kids and their families are so isolated it is debilitating.  These families have to be able to be in places/events where it's okay to spin in circles, it's okay to run away from Uncle Joe in fear, it's okay to hide under a table, and it's okay to meltdown into a puddle of mush screaming because your hamburger was cut instead of given to you whole.  These aren't kids who are manipulating or mis-behaving or being bratty.  These are kids who are trying to cope.  And these are families who are trying to help them.  They are a part of us and we need to do better as a society to embrace them.

The guilt we feel is relentless.  We want to be there for them without fail, but yet if we don't get a break we feel we'll go insane.  And then we feel horrible that we've even had the nerve to ask for such a break.  Nea doesn't get a break from her Autism, it has been and always will be a part of her.

And there is my other epiphany.

 Autism is a part of her.  It's not a part of me.  Meaning, I  don't have the skill set to live in her world like she does.  Just like she doesn't have the skill set to live in mine.  We work towards middle ground.  That's what these endless hours of therapy are about.  She's learning about "Non-Autistics" and how single minded we can be.  She's learning about "Non-Autistics" and how silly we are for not getting sheer joy out of endless 360 degree spins while naked.  I will admit, there are times I find it more than frustrating and more than maddening and yes....I lose my cool.   And quite frankly, so does she.  We are Muggles and Wizards trying to figure out the common things that we know and understand.

It's not easy.  But it is our journey and I would not change one day of it.















Alex Spourdalakis, you have taught me many things.  Rest in peace, sweet child.  Rest in peace.

Being Brave

 Our local Children's Hospital hosted a magical event called The Enchanted Ball.  This is the first year for the event, and we were able to get in on the fun early.  It was a fundraiser for The Children's Miracle Network and for F.I.R.S.T (Foundation for Icthyosis and Related Skin Types).  I've never taken Nea to this type of event before.  We have done festivals and carnivals which are usually outside.  Those outside events are good because I think she likes the open feel.  This was inside a ballroom, and I had no idea what to expect.

Checking out the dance floor before everyone arrives

I'm not a big princess person.  Meaning, the messages of princesses is not really something I really like.  So we don't have any princess toys around here or girly, frilly things.  If Nea grows up to love pink and everything about it (just like I do!) then that's wonderful.  She's already inundated with that message in just about every media available to her.  So until the time she can make the decision on her own...and start showing her own likes and dislikes, I will be trying to keep the balance for her.  I am working to make sure she knows about trucks and mud and all things icky.  I really despise "boy toys" and "girl toys"...can't they just be toys?  Anyway, I digress.   "Damsel in distress" is not a skill set I particularly want her to have.

I am an equal opportunity fantasy creator.  The weekend before she had an opportunity to spend an afternoon with SpiderMan and IronMan.  This event was an opportunity for her to spend an afternoon with princesses and all things frilly.

As I said, this was going to be an experiment.  There were many stressors that were going to be present such as an enclosed space, lots of people, loud noises and the overwhelming excitement of seeing Tiana and Rapunzel.

There were well over 200 people there, and timing was a bit slow.  She was incredibly patient sitting at the table with Grandma coloring and watching the crowd.  She was animated and excited unless someone made eye contact with her, or said hello.  Then, she shrunk like a flower and tried to melt into the floor.  She does so much better if people talk to me first and she's allowed to look at them (size them up) on her own terms.  Once eye contact occurs, it's over.

When the dance started, all the little girls went up to the dance floor to dance with the princesses and the princes.  Nea was excited to hear the music, but wanted no part of that crowd.  She danced on her own, in her own space near our table and seemed to have just as much fun.

Dancing at the Enchanted Ball

Getting announced to the Royal Court was the one stretch goal I pushed for her.  I knew it would be tough, and it was....but squirming is growth and I helped her march through it.  She tried very hard to say hello, and mostly spoke through a few tears but she did it.  I didn't attempt  formal pictures because I knew that would be way too much.  One goal at a time. :-)

Introduced to the Royal Court

By the end of the afternoon, she was out of reserves and looked for a quiet spot.  Of course the best one was under the table.  Grandma and I just went with it and let her stay there the last 20 minutes of the Ball.  Because, that's what you do.

A quiet spot under the table

An afternoon filled with fun and with learning experiences.  This "pushing" thing is a tough balance for me and I'm constantly having an inner dialogue with myself.  Am I pushing too hard?  When does she get to say, no?  How do we keep moving her forward comfortably?  Temple Grandin talks about this a lot, and I always appreciate her words.  I don't have the answers for sure.  So I listen closely to my heart.....

.....always listening for a reply from hers.

Drinking from the fancy glass at the Enchanted Ball

Routine: "Habitual or mechanical performance of an established procedure"

Routine.  We all need it.  Kids really need it.  Our kids on the spectrum need it about 1000 times more than the rest of us.

Nea is missing school.  She asks about the bus and going to school every day.  And as her language increases, I'm also noticing that her echoing is getting stronger as well.  I'm not sure if that's a learning process with new language or she's just blowing off some stress steam.  She repeats phrases often, which I won't lie...can be maddening.

Nea's brain is wired in a way where she likes to keep things the same.  Repetitive behaviors is one of the hallmarks of Autism.  There are certain things that she likes said in a specific order....

Hearing a train....
Nea: Oh! What's that?
Me:  (she knows exactly what it is, but its the script she wants)
Nea:  (frustrated because I am saying nothing)  Mama!  What's that?
Me:  (sighing)  What IS that?
Nea:  It's a train!

If I veer from that script she gets very upset and gets very frustrated.  She recites that script every time she hears a train whistle.  If I say, "Nea, you know what that is....what is it?"  She simply responds with the line, "Mama, what's that?"  She learned that script when she was very young, and I was trying to get her to focus on something she couldn't see.  Dog barking, train whistles, etc.  But now its a script that brings her comfort and she uses it often.

There used to be a school of thought that it was important to "pull Autistic kids out of their world" and not let them engage in repetitive behaviors, or self-stimming activities such as spinning and hand flapping.  But what we are learning from adults who are on the spectrum is that it brings them much relaxation and decreases anxiety.  So now there is a bit of a shift to allow these behaviors in moderation so that kids can maintain a balance that works for them.

I love this description by Dr. Mark Bowers, a Pediatric psychologist.

"I do want to take a moment to acknowledge, however, how it must feel for a parent to see the Autistic ‘veil’ drop in front of the child’s eyes as they check out from the real world for a moment and become absorbed in a repetitive behavior.  Especially for parents who have been working with their child for a number of months or years and have begun to see progress; the child’s return into scripting and other stereotypical behaviors is a glaring reminder that the child has Autism.  It also serves as a reminder to the world that something is not quite connecting in the child’s brain.  I often conceptualize this as a neurological tug-of-war that is taking place inside the child’s brain.  The hardwiring of the Autistic brain is determined to keep the world simple and the same, with little (if any) interest in relationships or social connections.   However, as the child makes progress and begins to learn how much fun can be had with others and the value of having play partners, another part of the brain begins to compete for dominance."

We decided long ago that home is a "free zone."  You should be able to do what you want to do at home right?  If I want to walk around without a bra at home, because I  feel more comfortable then I should be able to do that.  If Nea wants to watch the first 7 minutes of a movie over and over and over and over....she should be able to do that.  There are so many rules in our world that we are expected to follow that it seems just mean to make her follow them at home.  Don't get me wrong, it's not Lord of the Flies around here.  She still has to say please and thank you, she still has to do her chores, she still has to use words when requesting items.  But she also gets to let her hair down too.

Yes she has chores.  Just 2.  The first is to open the back door and let the dog in when he's done doing his business outside.  The second is to put a scoop of dog food in his bowl every night.  Not horrible chores, but 2 things she is very capable of doing.   Those 2 simple things teach her a few things: listening for the dog when he barks (auditory processing) (opening the door but NOT leaving), caring for the dog (empathy) and accomplishment (self-esteem boost).

Okay, back to today.

Here's how things go when we go to therapy:
1) We wait 5 min in the waiting room
2) Bear comes to get Nea for OT (Bear is the nickname she gave the OT gal)
3) Nea goes to Bear's room for therapy for 45 minutes
4)  Bear and Nea walk hand in hand to Diana's room for speech therapy
5)  Nea is in speech therapy for 45 minutes. (Mom is secretly watching in the observation room)
6)  Nea calls for Mom and Mom comes in to talk to Diana for a few minutes
7)  Nea waves bye to Diana and goes to the waiting room.
8)  Nea pushes the button to open the door and runs to Jamba Juice (just around the corner)

Today it went like this:
1)  Waiting room wait was 15 minutes
2) Bear comes to get Nea for OT...she has a student with her
3) Nea goes to Bears room for 45 min of OT therapy
4)  Bear walks Nea back out to the waiting room because Diana is not ready yet and with another kid
5)  Nea is in waiting room again for 15 minutes
6)  Diana comes to get Nea from the waiting room...she has a student with her
7)  Nea goes to Diana's room for speech therapy (Mom is secretly watching)
8)  New activity to include playing a game with a peer.  Diana with Nea and Bear with the other child.  Diana and Nea walk to Bear's OT room
9)  Nea tries to play the game.....total meltdown

Now, before anyone gets all out of sorts, I am NOT upset with anyone about this scenario.   Diana asked me beforehand about playing with the peer and I thought it was a good idea.  Also, I totally understand how things come up and patient flow gets interrupted.  It happens to me too when I'm at work, and sometimes its just inevitable no matter how hard you try.  It's not anyone's fault.

This meltdown was pretty tough.  I haven't seen one like that in a long while.  Diana came to get me and I scooped Nea up for tight squeezes and handed her her paci's.   Her teddy bear (the cherished friend these days) was in my purse so that was given to her as well.  It took about 10 minutes to get her calmed down.   Diana felt she tried really hard and seemed to really want to participate, but just couldn't keep it together.

We went swimming after therapy.  90 minutes in the pool did her a world of good.  We know she loves the water and the natural compression of the water is good for sensory integration.  She did tons of underwater swimming and was exhausted when we were done.  Wrapped in a towel after swim is another one of her rituals that she needed today.

We learned a few lessons with this one:
1)  We are trying again next week, but the peer will come to Nea's speech room and Nea will not go back to Bear's room.  That was probably the biggest stressor for her.  When she leaves that room, she believes she is done.
2)  Use visual cues for her before the peer activity.  She used visual pictures in school and they worked well for her.  When it was time to sit on the carpet, the teacher would hold up the picture and tell the kids it was carpet time....and they all scampered to find their seat!

Leaving routine is a stretch goal for Nea.  She's going to be uncomfortable for awhile as she tries to gain this skill set.