Blame, Excuses, and The Big Picture

I'll admit that I'm a bit disappointed in the autism community over the past few days. There is a lot of anger. There are lots of blog posts to that effect, for sure. What I'm not seeing is solutions. Blame and anger only goes so far, but as I am constantly saying, action is the only real instrument of change. 

The death of 14-year old Alex Spourdalakis - an autistic young man - at the hands of his mother and a caregiver has definitely struck some chords. Understandably, people are angry. How can they not be? A child was killed at the hands of their parent. Regardless of Alex's autism, it's severity, and however "hopeless" the situation may have seemed for his mother, this young man did not need to die. His death was not the answer. 

I've heard this covered from one of a few angles, depending on the source:

"Alex's mom was a victim of a system that failed her and drove her to where she felt she had no other choice." I'm mostly hearing this from the mainstream media, but that's to be expected. They're going to take an angle that gets them page hits. 

"No one is talking about Alex. What about him?" Some bloggers have taken this slant. While I agree, I think it gets more complicated than this. We'll explore that further. 

"Killing your child makes you nothing more than a monster. Alex's mom didn't do it for X, Y, and Z reasons, she did it because she's evil." Again, I think this needs to be explored, as does the difference between reasons and excuses. It's not always as simple as good vs. evil. 

The one thing I think we can all agree on - besides for the mainstream media - is that pity for Alex's mother ended when she chose to end her son's life. Really the method doesn't matter much to me - ending a life is ending a life - though she did so in a very heinous way. The fact is that her situation might could have been worthy of some compassion had she not killed her child. When she decided to do that, she made a decision - to decide who is worthy of life and who is not and what constitutes a life worth living - that was simply not her choice to make. 

This is where I differ from the way others look at that situation. While I don't agree with them, Alex's mother had her reasons for what she did. She must have. Very few people kill with no motive - no reason - whatsoever. Granted, sociopaths and the like can act in that manner, but I'm not sure that speculating on Alex's mom's mental health status beyond that of a stressed out special needs parent will do any good. We can never truly know, but I suspect she wasn't sociopathic or having a psychotic break. I don't think she was insane. I believe that based upon her reasons - wrong as they were - she felt that her actions were justified. She was wrong.

So while I believe she had a reason for what she did (I don't believe Alex's mother was simply evil), a reason does not make an excuse. She can't use her flawed reasoning to justify harming another. 

The problem I have is this...I cannot simply sit back and say that some people are just evil. To do so implies that there are a certain number of people who do this and, therefore, a certain number of lives that will be lost while we stand back and say that some people are just bad eggs. That, to me, is unacceptable. That makes each of us just as culpable in the death of the next innocent child for our inaction. 

However, if we are going to act in an effort to protect disabled children and adults from falling victim to the desperation of their parents and caregivers - as exceedingly rare as that is - we have to examine the reasons for why these parents like Alex's mother act in the way they do. 

Brainstorm with me here for a moment. What are some reasons we hear used in reference to these sorts of crimes?

Parents (from now on, I'll use that term for both parents and other caregivers) get overwhelmed. 

Parents can't handle the stress. 

Parents can't accept their child's diagnosis. 

Parents feel hopeless. 

Parents need more support. 

It's that last point that I think we need to focus on. For the people who say "What about Alex?", I'd say that this focus is for him. Alex did not ask to fall victim to his mother's abuse. No child - disabled or NT - does. No abuse victim does. The fault - the problem - lies with the abuser; however, if we have any hope of stopping such abuse and killings from happening in the future, we have to focus on the problem. The parent. 

That doesn't mean that we need to lock all parents up to protect their children from their brutal potential. As I have said - and I'm sure you feel the same way - we get overwhelmed. We all have days when we're at the end of our ropes, when we feel we just can't handle this. Yet, I've never considered harming even one hair on my precious boy's head. What makes my path diverge from that of Alex's mother? Why am I able to hold it together where she cannot?

It's probably many things. We're different people with different personalities and different thresholds for going over the edge. "The Edge" probably also means something different to all of us. My edge might be consuming a whole bottle of wine after putting Jack to bed or - most recently - a whole pint of ice cream. Someone else might have a different edge. Alex's mother's edge clearly involved killing her child. 

What else do I have that she didn't? Maybe I had more support. I have family close-by. I have all of you readers. I have my real-life special needs support group full of mamas I can turn to because they know my journey. It's familiar to them. I also have a somewhat healthier way of coping with stress. I release it by being open about it (which gets problematic, I'll explain in a moment). I eat ice cream rather than harm someone else. I'm fairly tenacious, so I don't give up easily. 

In other words, I have support, I have fairly healthy strategies (if you don't ask my doctor) for coping with the stress, and I have breaks when I need them. 

Here's the thing, though...I'm lucky. I'm lucky because these supports are just kind of there for us and I didn't have to ask. Not everyone is so fortunate, as I am well aware. That's where we come in. 

In order to protect individuals like Alex - in the true spirit of thinking of Alex - we need to address these issues in the parents to try - and my God we must try - to prevent another innocent life lost. I'd like to see changes in our mental health care system in which family counseling becomes standard care in the event of a "life event" like the birth/death of a family member, marriage/divorce, loss of a job, and the diagnosis either of a disability or of a serious illness in a family member. All of these events cause great stress to families, and counseling can give them the coping mechanisms - as well as an outlet - to keep parents from going over the edge. Counseling can also help talk parents through the grieving process that occurs upon a loved one's diagnosis, helping them come to a place of greater acceptance and understanding. Such a place helps parents stay away from hopelessness. 

We also need to expand respite as a part of the standard care for any person with a disability. While I am lucky to have family nearby, many of you are not. However, I'd argue that a small fraction have any type of respite care covered for your child. Instead, this leaves parents caring for an individual with no downtime. That's just unacceptable. No one can function like that forever. Especially for our kids who often need trained nursing care and assistance - not the teenager down the street who took a babysitting course - respite care might be the only option a parent has for taking a break. We have to expand its availability. 

Also, we have to stop demonizing autism parents. One very disheartening thing I read often in blogs is that parents are to blame for the way the public perceives autism because we complain about our kids. That parents should not voice those less-than-rosy aspects of raising an autistic child because of how people will view our children as a result. Well, I don't think that anyone has ever looked at me differently as an adult because my parents said that I pitched temper tantrums and was a pain to potty train. In fact, all parents complain about raising their kids, but for some reason we look down upon special needs parents for doing so. I'm not sure why, because in the end we're all parents!

If we continue to silence parents when they dare speak their feelings about raising a child that presents some challenges, those feelings will get internalized. Those parents will feel silenced and will stop seeking help. We have to make it okay for autism parents to vent frustrations. It is better that they write about the struggles they have rather than take them out on their children. After all, frustration and complaint does not equal not loving your child. 

And what about the way in which we demonize the choices that some autism parents make? Well, my thought on this is that any choice is better than causing your child physical harm. Abandoning your child to someone who can care for them is better than causing your child physical harm. Hurting your child is the one choice you are simply not allowed to make. So, while we might look at the parent who abandons their child to the state and feel superior, as though we'd never do such a thing, perhaps we should reserve judgment. If the alternative was the one that Alex's mother chose, I think that the parent giving their child to the state made the better call. As a community, we have to let that choice be okay without condemning parents. If we condemn, fewer parents will make those tough choices and will resort to the more desperate ones. 

I so hope that I do not ever have to write about one more situation involving an autistic child killed by his or her parents. I do not forgive, condone, or excuse Alex's mother for her actions, but we must be more mindful of what pieces are missing in these families that are needed to produce a safe environment for disabled children and adults to thrive within. As a community and for the good of autistic individuals, we have to address these issues. We have to, or else there will continue to be Alexs who fall victim to the brutality of their parents. 

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As an end note, if you ever have thoughts of harming your child in any way, seek help. Put your child in a safe space and call anyone - family, friend, neighbor, doctor, therapist, or the police. Telling someone that you need them immediately because you cannot handle your child at the moment is a far better solution than harming them. It takes a far braver person to admit needing help. Please do so if you ever get to this point. Please. 

His Own Two Feet

Our 2nd annual showing at the Georgia Walk Now for Autism Speaks was this past weekend.  The year's Walk was punctuated by the fact that there was an absolute deluge occurring in Atlanta that very weekend.  We woke up to thunder and texts from various members of Team Jack.

"Are we going?" they were asking.

"Yes," I replied, "we are absolutely going."

Yet again, I was overwhelmed at the turnout.  Almost everyone who committed to coming to the Walk did in spite of the rain.  Sure, we huddled in a parking deck to wait out the hour and a half prior to start time.  Sure, most of us were more than just a little soaked...but we were there.

We were there because of one very special little boy.

Our team raised $1300 this year to go towards autism research, awareness, and assistance for families.  We saw once again the generosity that people can display because of the life of a little boy.  My heart was full that day.

That was not the best part, though.

Last year, Jack had to be carried for the entire course.  That was two miles of alternating between me and Brian.  Our backs were screaming by the end of it all.  Honestly, we didn't expect much different for this year.

We were wrong.  We did carry Jack a little while, but he did a good portion of the course on his own two feet.  He moved under his own power.  It was his will and determination that kept him making each additional step, not ours.

It seemed appropriate, really.  He's 4.  He's growing up.  This is the year in which we're seeing Jack shed the baby-like appearance and begin to grow into being a kid.  He's doing better with stairs.  He's jumping.  He wasn't doing either at this point last year.

He's moving with his own two feet.  I can't wait to see where they will take him.

Worth The Wait

I don't like to throw out the "Consider Yourself Lucky" comments too often, but one instance in which I get those aimed in my direction is in regards to Jack's sleeping arrangements.  You see, Jack has never slept anywhere other than his crib.  So often, people will tell me how lucky I am because their kids are always wanting - begging - to sleep in their bed with them.  They recount their situation as drudgery at times, a foiled effort towards getting just a smidgen of privacy in their own bedroom.

I get that.  Really I do.  It's the opposite of the extreme we experience, and no one likes extremes.

Here's the thing about that - and you may have to trust me on this one - you would miss having that warm little lovey of yours cuddled next to you if he or she never did.  That's how I feel.  I feel a twinge of jealousy when people tell me that their kids sleep in their bed.  I long to be able to cuddle my sweet boy and see his baby cheeks laying softly on my pillow.  When he's sick, I wish that he would sleep in our room so that I did not have to endure a sleepless night of worry and checking in on him.  When we have inclement weather and tornadoes - as we are wont to have here in the South - I wish I could keep him close-by.

So, I felt a little ray of hope when we got Jack's new "Big Boy Bed".  It's an Ikea product that, in my opinion, rivals any kids' bed I've ever seen.  Honestly, he is less than enthusiastic about it, releasing shouts of "All done Big Boy Bed!" when I suggest that he might sleep there instead of his crib.  Even if he could care less about the design of the bed - right down to it's star canopy and reversible loft design - I am proud that he has a bed that other kids would look upon with wonder.

It also made me hopeful that I could one day get to snuggle my sleeping babe.

Well, that day came, if only momentarily.

Jack had gone for his EKG earlier in the day and - as has been his usual for the past year or so - he started running a fever later in the day that hit fast and furious.  His nose was pouring and he was letting out cough after cough.  By bath time, his cheeks were already red and raw from having to wipe his nose.  He was sleepy, it had been a long day, and he was not feeling well.  He was spent.

That combined with the melatonin made him nod off while I was reading his usual bed time story, the one we still read even 5 months after the holidays - Twas The Night Before Christmas.  Since we put his Big Boy Bed in his room, I have been reading his bed time story to him on the bed, so when he nodded off last night I laid him down beside me.  While I did not want to leave him on the bed (a night when he felt sick didn't seem like a good time for his first full night in his Big Boy Bed), I did get - for a few moments - that opportunity for which I have waited 4 long years.  I got a few moments to snuggle and cuddle my sweet boy.

No words.  The picture says it all.  It was bliss.  For the briefest of moments, we were like any other mother and son.  I was cuddling him before bed, while he lay at my side.

That brief cuddle was worth the wait, sweet boy.  It was so worth the wait.

I'm a Crappy Parent

I've spent the past 24 hours feeling like a seriously crappy parent.  Really.  Welcome to the pity party.

Here's the deal: maybe I AM a crappy parent.  Seriously!  After all, it seems that autism parents can't do anything right.  We're either labeled as martyrs by some if we fight too hard, or we're told that we've given up if we don't try hard enough.  Don't get me started on the people who think that we're exaggerating or buying into the latest "fad" diagnosis or looking for an excuse for our child's behavior (which, of course, everyone else has an opinion on how you should deal with it).

Being a blogger - particularly an autism blogger, who am I kidding...autism parents, writers or not, all get this, too - you are issued with unsolicited advice in spades.  It's okay to complain.  It's not okay to complain.  Try this.  Try that.  Your kid is different.  Your kid is normal.  You know, nothing too confusing, right?

And I have come to one important conclusion...I AM A CRAPPY PARENT!  Why?  Because I manage to screw up no matter what I do.  For example:

- I got my son was diagnosed with autism at 24 months old.  Letting someone label him surely has warped him.

- I didn't get my son diagnosed as early as some of my friends did with their children.  I was in denial for a while.  That had to warp him, too.

- My son has not said a spontaneous word or phrase for the past 30 minutes.  Instead, he's been reciting a string of echolalia as extensive as the day is long.  And I've allowed it.

- I've let him stim.  I buy him magnetic letters.  Surely, magnetic letters screw our kids up.  At least, that's what I've been told.  I've clearly been told to limit my kid's access to his favorite stims, but I let him stim away anyways.

- If stimming is keeping him from doing something he needs to do (like eat), I try to interrupt it, because interrupting stimming is apparently bad, too.

- I love my kid too much and try to see his behavior as his means of communication.  I bear in mind that my child has autism when evaluating his behavior.  After all, shouldn't I just treat him like everyone else?

- I do try to just treat him like a child.  That's messed up, too.

- I'm letting my kid eat a Pop Tart - a processed, gluten-laced food - while watching his iPad.  I'm not pushing new foods.  Instead, I'm settling for the fact that I will do ANYTHING to get my kid to eat. In fact, I let him have a Pop Tart last night, too.  I'll probably do the same tomorrow, because that's what I can get him to eat for dinner.

- And while we're at it, I'm not known to be the healthiest eater, either.  Some days, this is my breakfast:

And others, this might be my snack:

Clearly, I bear no shame.

- I let my kid skip therapy because he was so upset that he threw up.  That's bad, because therapy helps our kids.

- I took my kid to therapy the next day despite him being upset.  After all, too much therapy is bad, too.

- I finally consented to medication for my son after agonizing over the decision since January.  After all, medication is poison.

- I agonized over the decision to medicate my son and didn't do it sooner, because surely making him suffer with his anxiety over that time-span is bad, too.

- I don't do biomed.  I haven't tried EVERYTHING.

- I vaccinate my kid.  See the first medication bullet point.

- I complain that parenting my autistic child is hard sometimes.  That's pretty crappy because some people have it worse.  It's also crappy because it might indicate that I have something against my son, even though I really don't.

- I'm too positive sometimes.  Don't I know that some people are brought down by positivity, which probably makes me more of a crappy friend and page admin than a crappy parent, but you get the idea.

See?  My list of crappy parenting transgressions is extensive.  I feed my kid processed food, pump his body full of chemicals, and subject him to therapy that makes him cry.  I take it day-by-day and am not an expert in autistic children, though I might be the closest thing to one when it comes to my own kid.

Basically, no matter what I do, I'm screwed, because there is someone out there who will think it's the wrong way to think, the wrong way to be, and the wrong way to parent.

I am a crappy parent, but - pardon me for saying so - I'd argue that you are, too.  Actually, I'd argue that everyone is, at one time or another, messing their kids up in some way or another.  You're probably doing it without ever meaning to do so; I know that I don't wake up each morning and think, "I wonder just what I could do to really screw my kid up today?", and I'm guessing that you don't either.

Actually, that probably makes me a pretty run-of-the-mill average parent.  Each day, I set out in life trying to screw up less often than I did the day before, all in an effort to raise the best Jack that I can.  Some days I succeed better than others.

In the past week, I've gotten criticism for several things - deciding to medicate my child, being one - and I've seen other special needs mom bloggers get criticized for everything from complaining to letting their kids watch The Big Bang Theory because her kids could relate to Sheldon (the horror of letting your children watch a character with whom they can identify and relate!).

I think the mom-on-mom war has gone on long enough.  Not to go all Biblical on everyone, but I'd argue that the mom who has never made a parenting mistake should be the one to cast the first bit of judgment and criticism towards any of us fellow moms out there.  I'm guessing that I'd be hard pressed to find a mom who has never made a mistake in raising her children.

I'm a crappy parent, but I'm guessing that you are, too.  So is the NT mom who lives next door, and the one down the street.  There are crappy parents everywhere, but the hallmark of a good crappy parent (that may be an oxymoron) is that a good one isn't trying to screw up.  A good one is acting in the best interests of her children, even if those interests are sometimes guiding her in the wrong direction.  A good mom can admit mistakes, admit that she is not without fault, and move forward like the crappy parent she is.

I'm a crappy parent, and I think it makes me a pretty darned typical one.

More Than One Mom Can Provide

I love our developmental pediatrician, Dr. DP.  He is open, honest, and never leaves me astray, which was what made today's appointment that much more difficult for this mom to handle.

Jack's anxiety has steadily increased over the last year.  At his last follow-up appointment with Dr. DP in January, we agreed that Jack was struggling with anxiety, but we were going to give sensory integration our all for the next six months and see if it made a difference.

It didn't.  We got Jack a swing set.  We got him a crash pad.  We've been trying to give him input as often as we can.  I also communicated to Jack's private therapy team that we needed to put an increased focus on sensory integration.  I gave it my all; it wasn't enough.

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After the therapist woes we had experienced lately, I called Dr. DP's office for advice.  I started emailing the social worker in his office about the situation when the issue of Jack's anxiety came up.  I mentioned it more as an illustration that I felt like Jack's current program wasn't quite working.  I was surprised when she suggested that we come in to speak to Dr. DP about it very soon.  That was Thursday when we spoke of this.  Today was Monday.  They got Jack in that fast.

As I recounted to Dr. DP the struggles Jack had faced as of late, I felt a little dejected.  For the past two years, I lived with the happy knowledge that I was doing everything I could for my little boy and seeing some results, albeit small ones.  This was different.  This was something that I wasn't making a dent in and that was consuming us all.  My own anxiety had been increasing lately as a result of Jack's.  The never knowing when the next meltdown, outburst, bad report from school or therapy, or other issue would hit was making me nervous.  I've heard it said that autism moms can suffer from PTSD-like symptoms, and I definitely was feeling it lately.

Dr. DP was sympathetic and understanding.  I wanted him to know that I didn't believe Jack's aggression was true "aggression"; I believed that he was going into fight-or-flight mode in a panicked moment of needing an escape.  I felt like I needed to reiterate - even to the expert who seems to always get it right - that this was not my boy's fault.  It's just his neurology and a balancing act of helping him successfully navigate the world.  Unfortunately, I felt like my power to do so had diminished slightly as of late.

When Dr. DP heard this, he spoke words that felt so true but that cut me to my core at the same time - that this wasn't unexpected.  That the challenges would evolve over time and that as Jack aged, he might actually need more assistance.

Dr. DP recommended that Jack not only start anxiety medication, but that he also add ABA to his regimen.  He felt like we had crossed a threshold in which Jack simply needed more help than what we were currently providing through Floortime.  I've poured my heart and soul into Floortime, so switching gears isn't an easy thing.  ABA that isn't covered by our insurance.  ABA that is considered "experimental" by many insurers here in Georgia.

Not exactly what I hoped to hear.

It's not that I have anything against medication, but I also know that it's a slippery slope on which we now tread.  It likely means that Jack will continue to need medication for a very long time.  When Jack was diagnosed, Brian and I had agreed to avoid medication as long as we could.  Now that we were at that point, it felt like I was giving up.  Not that people who turn to medication are "giving up", but I had tried for so long to manage my son's anxiety on my own and through therapy.  I had hoped that therapy would give him the tools to self-manage.  I had worked my butt off trying to help him.  I had failed at doing so.  I wasn't able to make this better.  That was a hard reality to admit to myself.

Then, to know that the therapy my child needs at this time is, in all likelihood, something I cannot provide?  It's not easy for me to admit defeat, but in that moment I felt defeated.

I also knew, in my heart of hearts, that Dr. DP was right.  Jack simply needs more than I can do right now.  He needs more help than I can provide.  As with all things, I simply have to hold my head high, swallow my pride, and move forward to get my boy what he needs.  I've done it before.  I'll continue to do so.

We left with a follow-up in a couple of months, a promise to keep in touch via phone calls as Jack starts medication, and a prescription for the meds and an order for an EKG since the new medication can affect cardiac function.  I'm sure that the EKG will be an interesting experience, to say the least.

Jack and I have taken winding paths on this journey, and this is just another one.  It's unfamiliar to me and scares me, but that's okay.  The unknown isn't always bad; it's simply unexpected.  We'll just have to evolve.  I'll just have to evolve.

It'll take time.  I'll have to absorb what this new path means, but I will do so.

I will do anything for him.

Awakening: Reinventing Mommy Celebrates 1000 Ausome Things #AutismPositivity2013

When I sat with my screen open to a blank page contemplating what I would write for Autism Positivity 2013, I had a hard time selecting one specific aspect of my sweet 4-year old autistic son that does not fill me with boundless joy.  He is positivity and love and goodness personified.

Yet, when thinking on this journey that both my boy and I walk hand-in-hand each day, one word came to mind - awakening.

You see, before my son was born, I was a workaholic quality engineer for a tissue processing company.  On the day I went into the hospital to give birth, I had been on bed rest for two weeks.  I looked forward to returning to my normalcy - the hustle and bustle of my career.  If not for my son's special needs and eventual autism diagnosis, I might still would be in that same building, cranking out reports day-after-day.  My son would be in daycare like so many other children his age.  We would be looking at private schools for his coming Kindergarten year.  He might have a sibling.  I would hurriedly make my usual Earl Grey Tea without enjoyment and would speak to people in passing.  We would be an absolutely ordinary family.  Nothing remarkable about us, really.

This little boy I carried and delivered that day had other plans.  He was here to change the world for more people than he could possibly imagine.  There would be nothing ordinary about him; he was destined for an extraordinary life.

Indeed, he has been my greatest teacher.  After my son was diagnosed, his very wise developmental pediatrician recommended that I seek training in DIR/Floortime from a very respected professional at Floortime Atlanta.  I immersed myself in her teachings and those of Dr. Stanley Greenspan, but their most poignant piece of advice was this:  Follow Your Child's Lead.

And I have been doing so ever since.

It was a radical shift in everything I had learned about parenting.  For the first two years of his life, I had operated on the principle that so many are taught - parenting is a dictatorship.  It was my role to command; it was his to follow.  I had to throw away the parenting books full of advice and milestones and take his hand, giving him control over the life through which I was to lead him.  Instead, I gave him control, stayed at his side, and was determined to let him determine the course in the days and months and years ahead.

Floortime and my son reversed those roles and - in doing so - opened my eyes to the world as I had never seen it before.  No longer did I see flapping hands as a negative; they were a sign of my son's overflowing joy.  When I got down on his level, put my head alongside his, and looked to see what he was seeing, I saw incredible wonders and beauty in our world that I never knew existed.  In trying to take into account his sensory needs, my senses were opened to experiences that I never imagined.  I learned just how little we really needed words for communication, that I could understand my boy without him ever saying a word.

It is through my son that I have come to understand what true beauty really is.  It is through him that I take the moment to breathe in each experience and live life to its fullest.  My morning tea no longer is made in a rush.  Instead, I inhale the aromas and watch the leaves swirl peacefully in the infuser.  I listen to the gentle clinking of the rock sugar as it hits the bottom of my glass.  I see hues of color in each bubble and marvel at its travels on the breeze.  I know that all behavior is communication and I open my eyes to hear what it is that he has to tell me.  I know that love comes in so many forms that I cannot say that his lack of spontaneous hugs and kisses means he doesn't love; rather, his whole existence is an outpouring of love.

My little boy - my little boy who says so little while saying so much - taught me all of this.  I'd argue that it is because of his autism that he has opened my eyes and ears and heart and soul to all of the richness that life has to offer.  I followed his lead and he's showing me the world through his eyes.

What a beautiful awakening I have experienced...all because of one little boy.

Among His People

I had a lump in my throat this morning as I put my sweet boy on the school bus.  My baby who flapped his hands when his Dad's car backed out of the driveway.  My baby who gleefully said "See May" because he loves the calendar.  My sweet boy who - after I had said it - parroted right back to me, complete with the inflection and tone I used, the most beautiful phrase to come out of his mouth:

Jack and Mama

He seems so innocent, still such a baby in so many ways even though he is occupying the body of a 4-year old.  After the week we had last week, I just wanted to shelter him, protect him, and never let him go.

I wanted to keep my boy at home where nothing could harm him.  Where he wouldn't be made to feel bad or wrong.  Where he could be exactly who he is.  Where he could be protected within this cocoon that we have established here at home.

It is here that he doesn't have to be forced to be someone else.  He doesn't have to "get used to" the way the rest of the world does things.  In this world, he can just be Jack.

At home, I can watch him and protect him from harm.  I know if he's okay.  I don't have to worry if he will get hurt, or if he will scratch himself, or if he will suddenly have a scary reaction to something.  I can act if he starts running a fever.  I don't have to worry because I'm there and can keep watch over my boy.

Yet...

In the wake of feeling like the world just might not be a good fit for my boy, we went back to the Georgia Aquarium over the weekend.  It was Autism Awareness Day there, and we had free tickets and a whole 2 hours to enjoy the aquarium prior to it opening to the general public.  Naturally, I couldn't turn down free tickets, so I sent my RSVP the moment I received the email about it.

Honestly, going to the Aquarium was not at the top of my list after the week we'd had.  I was spent, my anxiety was at a recent high, and I had spent several days in a dark cloud - not because of autism, but because of how the world treats my boy and the things he must deal with because he is autistic.

Luckily, we had agreed to go with my mother-in-law, sister-in-law, and my baby nephew, so I couldn't back out of the deal.  It was a good thing.  I needed what I would find.

Jack's experience at the Aquarium this time around was actually worse than the last.  He really struggled to keep it together and was unsuccessful most of the time.  You might think this would have led to a negative experience for us all at the aquarium this go-around, but it did not.  Instead, when Jack was screaming, when he was pacing, stimming, squealing, and generally doing anything but looking at the fish, there was no judgment.  None.  Instead, I got smiles from the other moms.  A couple of people commented on how cute he looked.  One lady, who was escorting her older child wearing a set of bright blue headphones, commented to me on just how much my son behaved like hers when he was Jack's age.

And that's when it hit me.  We speak so much about inclusion.  Inclusion this and inclusion that.  It's better for our kids to be around "typically-developing" children, right?  Here's where I would like to amend that statement...you see, there were NT children at the aquarium yesterday, so you could call it an "inclusion" activity, but there was a difference.  For each of those families there was just like ours.  They all spoke the language of autism.  Every person in that aquarium had an autistic loved one, child, sibling, relative, or friend.

Jack - and I - were among our people.

Instead of a negative experience being - well - a negative, it didn't seem so bad, because there was no one else there telling us that it was.  There was no one staring or making us feel like our son was doing something wrong.  He could just be.

Perhaps, that's the model for inclusion that we should strive to achieve.  Instead of a forced mix of people to create a sort of accepting utopia, perhaps we should create an environment around our children of people who know and accept them for the wonderful people they are.  I am a firm believer that simply placing my child in a room with all NTs will not force acceptance on anyone who refuses, so I choose to surround my child with people who understand.

Because understanding and acceptance create an environment where are children - and us as their parents - are made to feel like they are not wrong.  They are okay.  That the unique things that make them who they are - even their stims, fixations, and rigidity -  are not merely aspects of themselves to be stamped out.  Rather, they are made to feel like people.  People who are worthy of love and respect.

Imagine the possibilities in such a world.