Wednesday, March 19, 2014

The Good, the Bad and the Unknown

I think anyone who is a parent knows that parenting can show us our best qualities and unfortunately sometimes our worst attitude.  I feel like being a mother I have experienced my strongest and my weakest moments.  I have decided that Autism Spectrum Disorder (and probably any special need) truly reveals the spectrum of the best and worst in all of us.  I find in our family it has taught us that we are stronger and more capable and more determined than we ever would have known had we not had to handle our situation.  I find in me personally having a child who is facing so many daily challenges has taught me that patience goes a long ways and frustration only hinders our routines.  My weaknesses in handling frustrating behaviors in our children are compensated for by my husband's very calm approach to parenting.  He is not at home coping with the daytime struggles, so when he gets home and sees me about to burst, he has fresh eyes to see the situation and a renewed tolerance level that has all but diminished for me by the end of the day.  This offers me a calming reminder to regroup before my motherly exasperation gets the best of me.  Of course, sometimes I bite his head off for offering up such reminders and I take it as criticism.  But I am thankful that in family at any given moment at least one person will be the levelheaded voice of reason that can restore the calm.

I think I have seen this scenario unfold in every family, especially if one parent stays at home.  But when I say these moments are intensified for a special needs family, I want to walk you through a day on the spectrum.  This is not an exaggerated example or a bunch of situations that have occurred over a few months' time, this is from ONE day, after which I did not feel it was a particularly bad day, but it was a day that made me think about how he and everyone we come into contact with are affected by ASD, for better and for worse.

Our day started at Five AM, he had actually slept the night before (which happens only about once or twice in a 6 month period) so he was up very early, but I still tried to lay down on the couch with him to get him an hour or two more of sleep.  By six he still had not fallen back asleep and my husband had gotten up for work.  He turned off our outside light, as he always does in the morning, but today was different.  Today our son was awake and saw the lighting in the room change.  This brought on an intense negative reaction.  "No, the light on!  No, the light on!"  We tried to correct the lighting back to the previous hue, but it was too late.  Then he just screamed, "No, the light off!  No, the light off."  Something so very simple, and I knew it was going to be a challenging day.  An hour of screaming and crying ensued.  Eventually he settled down enough to watch a show and eat his breakfast.

By the time he needed to get ready for Mom's Morning Out, he was in a decent mood.  Telling him we needed to get dressed though, was met with staunch opposition, and he claimed he wanted to stay home and go night night.  I have learned to just ignore these statements and get him dressed through opposition and sometimes kicking and screaming.  He alway enjoys preschool and Mom's Morning Out once he's there, so it's worth the morning struggle to get everyone out the door.

We pulled into the parking lot at MMO, it was full.  Ugh, I always dread when we cannot park in our normal spot.  As we pass where we would normally park he begins to scream.  "Go to school!  No, go to school!"  I try to explain to him that he still gets to go to school but we have to park somewhere different.  It doesn't matter, nothing I say in that moment will be processed.  He can only process what he is seeing, which is us passing by the school.  Even once we are parked, it is different, it is scary, it is unknown.  I know he will need to be carried today and he will not go in willingly since we will be using a different door.  I get out the baby's infant carrier and set it on the sidewalk, I have big brother go stand by her on the sidewalk and then I unbuckle him and pick him up.  It is amazing what we are capable of when there is no other option.  I pick up the baby in her seat (easily 22 pounds, plus a 15 pound carseat) and carry my boy (another 40 pounds) up the stairs and into the church.

Not just one, but two church secretaries see me trying to navigate the door while holding both kids and trying to keep the oldest out of the way.  They both jump out of their seats and nearly break their necks to assist me.  One of the secretaries knows us very well and always watches the baby so I can have both hands to get the boys to their upstairs classroom (a stroller might be more ideal, but our son is terrified of elevators and going into one brings on a panic attack).  She takes the baby into her office.  Once we get to the top of the stairs Evan lays down and covers his eyes.  He generally shuts downs for about the first 20 minutes of class.  He will close his eyes and sometimes cover his ears.  He has two wonderful teachers at MMO and a great one at preschool too.  One of his MMO teachers has been on this journey with us from the beginning, before we had a diagnosis or knew what was "wrong".  She and the director have worked with us to accommodate him and make the rooms and transitions less intimidating to him.  She pulls him off of me and ushers him to the Dinosaur Table.  I am not positive, but I think this new area this year with dinosaurs all set up to play may have been inspired by Evan and in a hope for him to have better days.  As I try to sneak away, I hear her talking to him (eyes still closed), "Look Evan, it's a T-Rex and a new dinosaur book!"  I know he is in good hands and that he will have a good morning.

Upon pick up, he is smiling and jumping and running circles around the big room.  I notice his shirt sleeves and collar are soaked.  It must have been a little bit of a hectic morning as the sleeves have holes chewed in them.  He often uses chewing on his clothes to calm him during stressful or overstimulating situations.

On to lunch, we attempted to dine in at a fast food joint as we had to go to an appointment that afternoon.  We always go to Wendy's, I can watch the kids closely while I am in line and it is usually pretty empty.  I looked through the window before parking and cursed under my breath.  There was a huge line and they are slow.  It didn't matter, the expectation for going to Wendy's was set once we turned on that street, a change in plans would have resulted in a horrific meltdown and I needed him in a good mood for his haircut (our most dreaded appointment ever).

So I sat everyone down at the booth and they were perfect.   The oldest entertained the other two and they all waited very patiently.  It dragged on, I was in line for ten minutes and I knew I had three little ticking time bombs over there, one who was especially explosive if things went south!  But they waited, they laughed, they sat patiently the entire time.  A little group of old ladies commented to me how wonderful they were being and what well behaved children I have.  I was beaming with pride for all of them, but especially for Evan.  If they only knew how many months of therapy and how much coaching it has taken for him to sit at a table and fight the urge to run in circles.

The boys were almost done eating when I realized the juice box I had ordered for Evan was the right brand but taller than the ones we use at home.  Oh NO!  This is going to be awful!  And it was.  He kept asking for juice to go with his food.  I showed it to him.  "No, wrong juice!!!"  I explained it's the same, the same color box, the same brand, it's the same!  No, it was too tall, it was not the same.  He started screaming.  I told him his dinosaur water was in the car and he could have it as soon as we were done.  "Yes, Dino water!" he wailed.  Well, no, we have to get done and go out to the car.  There was no reasoning or explaining at that point and the screaming was getting louder.  It's pretty hard to make a quick exit with three kids under 5.  I gathered up everything, while holding him and trying to calm him.  I could not walk over to the trash and then return to the table to get the other kids.  He would think we were going back to sit down longer and would flip if we change directions.  I had no choice, I had to carry him, the carseat with the baby and our tray so that we could do it all at once.

So that's what we did.  With him screaming in my arms and my other arm through the car seat holding the tray of food we headed for the door.  An older lady from a different table approached us.  She had been there the whole time, so she saw the great behavior and then witnessed the meltdown.  I thought she might be coming to help me with my tray.  "Wow, you have a pretty unhappy little boy on your hands there.  He must need a nap."

What do you say?  I will tell you what I wanted to say.  I wished I had an extra hand to punch her in the face.  Who would take all of the effort to get up and walk over to me in that crazy situation, make a stupid presumptuous statement and then turn to walk away without offering a hand?  What did that accomplish.  I wanted to say, "No, he does not need a nap.  He has not napped in years, hell the kid doesn't even need sleep at night.  He has managed himself so well this whole time and you are approaching me now, and getting him even more upset to make a statement that doesn't help the situation at all?"

Unless the situation is dyer and the person is especially rude, I do not play the autism card.  I do not even allude to the fact he has an issue.  I am always afraid it will sound like an excuse.  And really how much time do I have to make someone aware that he has autism and sameness is a must and the juice box was different and this messed up his world and correcting it takes time.  I guess I wish I could take the time to make people aware.  But in those hectic situations, his well-being and our safe exit is all that matters.  I smiled and said "Well, you know, they had the wrong juice."

She shook her head and walked away.

Whatever, I had bigger problems.  This kid was in major meltdown mode and I had a haircut appointment to get through.  I blamed myself, what an idiot I was to not bring in a drink option for him in case something went awry with the drink they have.  Lesson learned!

So, on to the haircut.  We use a lady who cuts hair in her home and she has been amazing.  Even when it doesn't go well (which is always) I do not have to worry about getting a bloody nose in front of a bunch of other people or dodging dirty looks and rude comments.  She has a play room that he can relax in while our oldest son gets his cut.  He hears the clippers and covers his ears, but does not react as badly as he does in a regular salon.

Once it's his turn I go in and sit on the chair and put him in my lap.  He screams and cries the whole time.  The vibration of the clippers, the sound of the clippers, the feeling of the hair falling on his face.  It's sensory overload at its worse and most children with autism absolutely despise haircuts.  He also despises hair washing and brushing.  So we go through a hell of a few minutes once a month to have an easier daily routine.  We have tried distractions, treats, everything.  Nothing works.  We cannot use scissors as he bucks the whole time.  It is so terrifying for him.  Our hairdresser gets it done in about 4 minutes and we just just buzz it off.  I put a hold on his entire upper body with one arm, I hold his forehead with my other hand and I lock his legs between my two legs.  I count and provide deep pressure and sing ABC's.  There is no explaining it will be done quickly as the here and now are all that matter.

After he was done the hair on him was really bothering him.  It usually does not bother him this much, but this day he was itching all over and sobbing on the floor.  Our hairdresser sprinted to her son's room and grabbed a shirt for him to wear.  I had one in the car, but we didn't want him to go outside without a top on and I couldn't leave him so upset, it would only intensify.  There was a raccoon on the shirt, so at first he wanted nothing to do with it.  We let him settle and she asked again if he wanted a fresh shirt.  He let her put it on him.  She knows how hard this experience is for him and goes above and beyond to make him comfortable.  He wore her son's shirt home and I was so grateful that instead of brushing it off as an overreaction she was incredibly eager to help.

We got home and needed a bath as he was still itching.  He did not want to take the raccoon shirt off now!  I think it was about thirty minutes of running around the house and screaming "No bath!", I am sure some things got broken, I don't really keep track anymore.  We put on some music and his mood improved.  We were able to get the bath done, although he was very upset by the bubbles (soap).

After bath I had a glass of wine and the boys had a dance party.  We played Her Diamonds over and over (how fitting, right?); that boy loves him some Rob Thomas.

This was around 3 and I will be honest the rest of the day I do not remember as vividly.  I am sure dinner was a bit of a battle.  He fell asleep rocking on the couch singing after taking his medicine (without sleep meds, he sleeps only two-three hours a night).  He slept until 12 and then was up for two hours (I do not remember this specifically, but it's pretty much a given every night) and then finally fell back asleep next to me on the couch.

This is long.  This is exhausting to read.  This is exhausting to live.  So what is the take away?  A couple things.  First, I go into excruciating detail because our lives right now are very carefully choreographed routines.  We tip toe, we plan, we sometimes feel like we walk on egg shells to keep our lives and his world running as smoothly as possible.  For families living with autism, Autism Awareness is not a buzz phrase.  We are not using it as an excuse for bad behavior or a ploy to get your pity.  We want you to know what it is like and we want you to feel how he feels.  I want you to know how bad it was and how much better it is getting with services, but how much further we have to go.  I want you to understand that my child is not just quirky or just a little different.  You are seeing years of progress with intervention and many hours of work and patience that our family and our son has endured.  When you see us on our good days, it is because these services are working and I am working endlessly to make everything go a certain way so that it will be a good day.  When you see us on our bad days, know that we are a work in progress and we are constantly adjusting our lives and tactics to address any new challenges autism presents.

The second take away is quite simple: people matter.  The people that surround us are our support system, our confidants and sometimes our hindrances.  Out of this entire day that I have laid out for you, there was only ONE person that didn't get it.  There was only ONE negative reaction that left me with a bad taste in my mouth.  And thank God for everyone else, because if we had to combat autism and negative people all the time it would be too much.  I am so grateful for all of the people, even strangers and acquaintances, that offer a helping hand or a kind word.  When everyday goes like this, we need understanding and we need people in our corner.  He needs teachers and therapists that care, because we are shaping him into a person that can conquer all of this.  I want the world to know how important that is and I want our leaders to do more to make those services and autism research a priority.

The challenges of autism offer all of us an opportunity to be our best selves.  It offers my husband and I  the chance to be the best parents we can be.  It offers our family a chance to be supportive and caring, even if they cannot be here to help with the daily struggles.  It offers our friends the chance to be a listening ear or a shoulder to cry on when we need that support system the most.  It offers his siblings a chance to be better people and to know that it is never okay to bully and it is always a must to take care of those that cannot take care of themselves.  It offers teachers and professionals in the field of special needs a chance to shape a little boy and give him tools he will use the rest of his life to function and succeed in this world.  It offers strangers a chance to lend a smile, or a helping hand that could make our day ten times easier and they may never know.  My hope is that after reading this you will always take those opportunities because you know the difference it can make in a family's day.

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