Thursday, September 29, 2016

The SuperMom I Don't Want to Be

Lately, I find myself very tired.  Not just physically tired, but a much deeper emotionally tired that seems impossible to overcome.  As a parent of an autistic child, I am always searching for answers and better ways forward.  At some point, you almost feel as though you are on autopilot.  Everyday schedules filled with therapies, doctors, interventions and intense school drop offs and pick ups become the norm.  This chaotic schedule is peppered with meltdowns, aggression, rigidity, small victories, small setbacks and an emotional roller coaster.  As outsiders look in they watch in amazement at just how convoluted our new normal is.

During a recent particularly hard stretch that has consisted of a lot more bad days than good, I looked through my Facebook feed filled with mostly autism pages and ads for autism related merchandise.  I saw not one, not two, but three shirts advertised that were boasting of the SuperMom Autism Mom.  And it made me mad.

First of all, for the last few years I have felt like anything but a supermom.  I have felt defeated, overwhelmed, sometimes cautiously optimistic, drained, but never super.  I've seen the shirt and heard the mantra that "God found the strongest women and made them Autism Moms"...pfff.  Or how about regular women get handed an extraordinary parenting challenge and are doing their best everyday to rise to that challenge.  Some days we don't get there and there is no switch that flips on magical parenting powers when your kid gets an autism diagnosis.  This shit is hard and you hope everyday that your best is going to be enough.

Secondly, I don't know of one autism mom that wouldn't turn in her cape to get some real support and assistance from professionals, educators, doctors, friends and family.  When someone says "I don't know how you do it all..." most of us think to ourselves, "Well, we have to do it all.  There isn't a choice."  No one is going to hold our hands while we navigate and often fight the school system for proper placement and the right supports.  No therapist is going to be there while he goes into a downward spiral over the weekends and spends hours raging.  No doctor is going to tell us which therapies, when to give up on therapies, which diets, what's medical versus neurological, when to turn to medication, when to give up on a medication, what will insurance cover, what is the responsibility of the school versus private therapies or how to put all of that together and get a holistic picture moving forward.  So we, as parents, do the best we can with the bits and pieces we gather from research, from our kids' teacher, from our doctors, from our online autism community and we map out some semblance of a plan.  And all of that does take a colossal effort, but it shouldn't all fall on us.  We would love to have more direction.  We would love to have someone hold our hand.  We would love for someone to get the 10 professionals who work with our kid in one room with us all at once and discuss our ultimate goals and methods going forward.  But that isn't how it works, even with 1 in 68 kids now on the spectrum autism parents can't just be parents, we have to be case managers and IEP managers and insurance experts because right now there isn't a better way.  If we simply choose not to do any of that, our kid, our families, our life falls apart.

Lastly, autism parents already feel incredibly isolated.  The SuperMom Autism Mom complex sets up the unrealistic expectation that we are supposed to put on a happy face, have unabated optimism and carry our autism awareness torch through it all.  Unlike other parents who have a child with a disability, mental or physical illness, we are torn apart when we vent about the hardships autism presents to our children and to our families.  We all love our children, but are told we have to love their autism too.  While other parents openly discuss hating watching what anxiety, or Sensory Processing Disorder, or OCD, or bipolar disorder does to their child, our autistic children are facing many of the same symptoms and disorders and, yet, I am expected to bury all of that and only talk about my son's amazing memory, unique perspective on the world and his excitement for life.

Don't get me wrong, I love those things and I will celebrate his successes and him as a person until the day I die, but right now our challenges outweigh our celebrations.  Right now I'm wearing long sleeved sweatshirts everyday to avoid his teeth breaking through my skin.  Right now I'm frustrated that he's crumbling inside and not a single professional on our team has the solution to stop the fall.  Right now I'm exhausted from dodging and taking blows and I'm devastated that my other two children are looking on while it happens.  Right now I'm in tears that my baby just had to have a prescription written for an immediate sedative because we've had too many recurrent rages go on for hours.  Right now I'm terrified that as this beautiful boy gets bigger onlookers will misinterpret his sensory overload or short circuiting and will call the police.  Right now I'm scared that during meltdowns he's screaming phrases he doesn't even understand; phrases that had the doctor on the other end of the phone wanting to call a squad and have him admitted.

Right now this is where we are.  And it sucks.  I don't want to put every ounce of energy I have into finding the solutions to get us to a more manageable place.  I don't want to spend all of my time advocating for better treatment.  I don't want to try a new medicine and hope the good outweighs the bad.  I don't want to put up a facade of strength when all I want to do is cry.  But there is no alternative.

I don't want to be SuperMom.  I just want to be his mom.  

Sunday, September 18, 2016

To the Boy Who Held My Autistic Son's Hand

This is your first week of kindergarten.  You are nervous and excited.  You are getting into a new routine and meeting new friends.  One of those new friends is my boy.  He comes into your class only for a half hour each day because being in there all day would be too much for him.  He goes to recess with you, but he has a grownup right there with him because sometimes he tries to runaway and he doesn't always understand playground rules.

When I saw the two of you holding hands today, my eyes filled with tears and my heart filled with joy.  I know you don't understand why it means so much to me that my son has a friend.  I know you are happy to play with a boy who is filled with life and laughter.  I won't say thank you for being his friend, because I know you like him for him and not to get a pat on the back.  

I do have a favor to ask you, though.  Right now your days are filled with story time, play time and crafts and you both do pretty well side by side.  But, you see, my son has autism and I know there will come a time when you will start to notice his differences. 

You'll notice the holes in every shirt he has because when he's anxious he chews on his collar.  You'll notice he runs back and forth and flaps his hands when he's excited.  You may start to notice he often talks a little too loudly.  You will start to wonder why he covers his ears when he's surrounded by people.  You will start to notice the stares from other kids when he gets upset about seemingly little things.  You will notice he often asks the same question over and over again.  You will see he often gets stuck on a subject and can't always move on to talk about something else.  You will start to wonder why he rides a different bus or why he spends so much time in another classroom.  You will notice he does different school work and he can't ride a bike.  You will hear other kids making fun of him.  You will then realize he doesn't understand they're mocking him.  These epiphanies won't hit you all at once, but I know they're coming just the same.  

For today, I am going to hold onto and cherish the image of the two of you holding hands, blissfully unaware of your differences.  But as time goes by and you start to notice, I ask with all my heart that you don't let go.     

Tuesday, September 13, 2016

What are we fighting for?

There's one subject you rarely read about on parenting autism blogs: marriage.  I have stayed away from it too.  I guess that's because it's not only personal, but it would no longer be just my parenting experience I'm sharing.  It involves someone else.  It could be considered airing our dirty laundry for the world to see.  But it's relatable, it's honest and it's a void in the vault of the written autism parenting experience that could probably use some light.

There are always disagreements in a marriage.  As special needs parents there seem to be more.  And with the additional stress that comes with being an autism household, boiling points come faster and cooler heads do not always prevail.  During our latest (heated) argument my husband and I went round and round regarding the effectiveness of a specific therapy.  Are we seeing gains?  Are those gains in the right areas?  Is it worth continuing when problem behaviors are still such a huge part of our days?  Why isn't this helping and what will we try next if it doesn't get his aggression under control?  

I personally feel like we are making gains in this area and we are having less severely aggressive incidents than we had a year ago.  My husband is frustrated we aren't making more gains and that nobody seems to care or understand the effect his aggression has on our everyday lives.  While I'm fighting to press on, he's fighting to press professionals harder.  As we butted heads, raised voices and jabbed rhetorical spears my rational brain became irrational.  Until he said "In a couple years he's going to be bigger and you aren't going to walk away from those blows" and it cut through my angry haze.  And then it hit me, his argument and frustration was stemming from concern.  Concern for our son's well-being, concern for the safety of our other children, and concern for my safety.  When we have these disagreements, no one is fighting to win.  It's so important to remember we are fighting for our child and we ultimately want the same thing.  It's especially important keep that in mind before arguments turn into insults and insults into low-blows.   

 This argument was just the latest in a string of arguments over the last couple years revolving around education setting, therapies, where we live, and how we can most effectively discipline and teach our autistic child.  I could go on and on.  But when I look at that list, I don't get discouraged.  I see two parents who both vehemently love their children.  I see two parents who both care enough to have an opinion about the best way forward, and who will both fight to make it happen.  We don't always agree.  Sometimes we argue.  Sometimes we compromise.  But if our children's health, education and mental state are the things we bicker about the most, I think we're doing something right.  There are a lot less important things we could be fighting for.

I want to tell you a story...

I want to tell you all a story. It’s about a mom who had two babies 12 months apart. And the second baby was different. He was sad or mad...