Thursday, February 26, 2015

His Name is Isaac

It has been a year since we launched Isaac’s Facebook site.  We didn’t know what to expect when we started but we knew why it must come about.  Over the years, many many many people have told us again and again and again what Isaac couldn’t do.  As significant as his challenges were when he was little, they seemed magnified as he got older.  I saw people giving up on Isaac.  I saw people discounting my son.  He had “reached his potential” before he was a freshman in high school.
Most of these people weren’t cruel, or didn’t mean to be….but there is a cruelty in discounting anyone, isn’t there?  I was tempted to listen to the multitude and to discount my son as well.  I knew all too well his many challenges.  Still, Isaac was my son.  I had named him.  I had been with him through every struggle.  I could not make myself deny that he had purpose.  No matter the autism, no matter the behaviors, no matter the cognitive delay, no matter the language impairment, no matter the lack of motor control, Isaac mattered.  He could contribute….and he needed me to champion his personhood.

So we began “I Can 4 Isaac”.  It was a place on Facebook to share joy, love and encouragement.  It was a place where no matter how stinky your own day had been, you could be greeted with a “Good Morning!” and a “Love You Friends”.  We had no idea what to expect as far as a following.  We started with just a few friends but we have grown to over 1200.   That’s not bad for a kid with autism who had been given up on by so many.  Isaac has grown to love greeting his friends with a “Big Smile” every day.  He sees my phone and seeks to make another video greeting for his site.  He lights up.  He sees his job.  He sees his purpose.
The site has inspired so many.  There are people all over the world who celebrate the holiday Isaac made up, First Day, which is to be celebrated on the First Day of every month with some special honor.  Isaac gets “Just One” gift on First Day.  Some of his friends eat a special meal on First Day or indulge in a celebratory snack or spread some joy to those they see knowing that First Day is a new beginning and an opportunity to start again.  First Day is a day to remind yourself that you cannot give up.

Because of Isaac, people have learned the importance of celebrating each new moment as a gift.  They delight with him in Pizza Friday and laugh along with the exploits of “Chris the Penguin”, the mascot of Isaac’s site and named by Isaac because of his love of Christmas.  Isaac has hosted a virtual ice cream party to thank his friends for remembering that those who are different are also important.  Isaac has shown the world just a bit of what he is capable of.  He has made blankets and pillows for people who needed to know that they had not been forgotten.  Isaac has spent a year spreading encouragement and cheer.  Isaac has been a minister of love….one of the highest and noblest duties that a human can hope to undertake.

It is fitting that the anniversary of Isaac’s site should fall so close to a day that calls people around the world to “Spread the Word”.  The point of the Spread the Word campaign is to have people pledge to stop the hateful and unthoughtful use of the words “retarded”, “retard”, or other speech that seeks to define humans by a lack of ability instead of respecting them for their value as individuals.  The Spread the Word campaign urges another r word to replace the old one….Respect.  Respect is a right for people who are differently abled…respect and admiration and awe for every one of us that is different in our own special way.
Isaac is different.  He is unique.  He is not “autistic”.  He is not “retarded”.
My son’s name is Isaac Asher. It means “Happy Laughter”.

 Isaac is his own individual.  Isaac is important and still has so much to achieve and accomplish.  It is well within his grasp.
Isaac is changing the world.  Isaac is worthy of respect. 

Tuesday, December 16, 2014

A Travel Journal- The Saga of Autism, Obsession and Sleep Deprivation- A Mom's Recounting

It’s quiet now…save for the clock ticking and the house settling.

It’s quiet and safe.  It’s quiet and I’m typing ….because I feel I should document it for those who cannot know and for those who cannot bring themselves to share.  I should type.  I should try to tell you.  I will try but no promises.  I know I cannot do it justice.  I’m still reeling though I look calm and seem collected.  I feel paralyzed.  I don’t know what to do with the quiet.  It’s like shell shock I would imagine.  It’s quiet and safe now…but in a few hours, reality begins again.
First to establish intent…I am not complaining.  At least I am not setting out to complain.  I want to give you a peek because you cannot begin to know if I don’t try.  As it stands, you won’t really believe my recounting.  I will be too honest.  Whether you believe me is your own right.

I love my children.  I love Isaac. I am strong.  That is what we need to start out with.

Isaac was very excited to go to Oconee for Thanksgiving.  He’s always excited for the next event on his calendar.  His cognition is so greatly affected by his autism but he understands the calendar.  He knew that we were leaving Tuesday night.

Packing for any trip is hard for six people particularly when four are children and especially so when three aren’t capable of packing anything for themselves.  Our lives are so hectic that we had not done much packing before Tuesday afternoon.  We worked hard and were on the road by about eight.  It was dark and raining and traffic was heavy with lots of other travelers on the road.  We drove through accidents and hurried drivers but we arrived and were welcomed by the familiar winding roads and the homey cabin.

Routine helped that first night.  We unpacked, made beds and settled in.  Isaac didn’t sleep.  He sat up and talked.  He leaned over our bed and bellowed “Tomorrow.  Tomorrow is.  Tomorrow is Wednesday.  It’s time to wake up.  First day soon.  First day.  Trouble on Planet Wait Your Turn.  Tomorrow.  Tomorrow.”

“Isaac, its night time.  It’s dark.  Its time for sleeping.  Lay down.  Go to sleep.”

“Tomorrow.  Tomorrow."

“Go to sleep”

“Calm down.  You need to calm down.”  For the record, we were calm.  We were too tired to have the energy to raise our voices.  Still he heard the frustration when we muttered again and again.  “Its time for sleeping.”

Isaac was escalating, and was “Upset” “Very Upset” that we had not found the energy to rise.  “Get up.” He demanded.  “No” we responded.

Then he started hitting and pinching and scratching.  He would make us respond.
“No thank you Isaac.  I do not like your pinching.  Time for sleeping.  Go to bed.”

Isaac began to yell.  His yell is disturbing.  It’s like that of a tantruming toddler but morphed to fit into his almost sixteen year old pre man body.  It’s loud and disturbing.  “Isaac, all done fit.  Lay down.  Go to sleep”

“No. “  Then he directed himself, “Calm down.  You need to calm down.”
“Yes.” We agreed.  “Calm down.”

“Time out” he challenged himself.

I wish he’d act on his own declaration, I thought.  He doesn’t.  He just jumps and hits and pinches and screams and yells “Time out.  Calm down.”

“What do you want?” we almost begged.  Silence except for his glare.

“Need to calm down.  Want need to calm down.”

“OK.  Calm down.  Time for sleeping.  Go to bed”

He and we weren’t convincing enough.  He kept yelling and tantruming.

We tried everything we knew:
“Isaac, go to the bathroom.”
“Isaac, get some water.”
“Isaac, look at your calendar.”
“Isaac, please please please please go to sleep.”

Finally, I caved in.  It was three or four…I don’t know.  I couldn’t quite read the clock.  “Isaac, do you want to work?”

“Yeah, work.”

“Fine.” I responded.  I tried to get Sam to stay in bed.  “I can’t sleep now if I wanted to,” he replied.  I sighed.  I understood.

The three of us went into the front room of the cabin.  Jonathan slept on the loveseat.  Tirzah had collapsed on the pull out bed.  How they had slept through all of this I will never know…except that this is normal for them.  They and their sister, Eva, who slept in the other bedroom, had always known this chaos.  They had adapted.

“Ok. Isaac, we’re going to work.  Write your name.”  I had a stash of notecards I had brought for Isaac to sign and tidbits of candy cane to exchange.  He tried but he was too wound up.  His penmanship lacked.  His letters were huge and off the cards.  I conceded a couple of candy cane crumbs but moved on to a second activity.  I glanced at the clock.  This was ridiculous.  Four o’clock in the morning and doing behavioral therapy.  I grabbed a pillow kit.  The objective was to tie the fringe and make a pillow.  Isaac has begun to point all the time which is kind of ironic since we had to teach him to point when he was two.  I think of the hours we spent teaching him to point and tear up when I see his fingers now bent in a continual point until his palm is forever wrinkly and damp with sweat.  He has a hard time making the tie and after our night so far I was not going to force the issue.  I wound the fringe and let him pull the ends.  I automatically directed: “Pull Isaac”, “Pull”, “One, two, pull”, “Just four this time”, “Good job”, “Nice working”, “Here’s some candy cane.”  It went on till seven or seven thirty until two pillows were tied, stuffed and closed off and Isaac’s siblings were awake.

Sam and I looked at each other bleary eyed.  Isaac was running around the sleeper sofa again and again and again.  He was fast and making a draft throughout the cabin.  He almost galloped.  “Almost First Day” “Oconee today”, etc., etc.

“We’ve got to take shifts, “I managed.  We knew we had to get some sleep and as things stood we would not go hiking or driving today.  We couldn’t.  Eva came in and took pity on her parents.  She made oatmeal for her siblings while Sam and I nodded off.

I love her for doing that.
We woke up two hours later.  Eva had Jonathan and Tirzah quietly playing Monopoly in the floor while Isaac circled them doing laps around the sofa.  I went to my sweet daughter and hugged her.
“It’s good momma,” she said but she hugged me back and we both spoke volumes through that one hug.

Sam and I moved slowly through what was left of that morning.  We were exhausted.  Our primary objective was to make it to the park office and pay our balance for the cabin.  It takes a while to get six people dressed and ready.  Isaac was not sympathetic to our plight.  He was pretty tired too and very cranky.  As soon as he saw Sam and me, he broke his stride around the sofa and wanted to go.  “Wait” we replied.  “We have to get ready.” Isaac was incapable of patience at that moment.   Wait is not a favorite word of his and as far as he was concerned, he had waited all night.  Immediate escalation ensued.  “Wants needs to calm down.  Must calm down.”   The dread monologue was followed by aggression…pinching and attempts to bite.  First shift.  I got ready; Sam stayed with Isaac and directed Isaac’s siblings to get ready.
The trick to Isaac’s tantrums is your response.  You may not get angry nor may you respond in anger.  Isaac identifies anger in your voice and escalates his behavior further in response.  With every aggressive act, I heard Sam respond “No thanks Isaac.  Tell me what you want.  Use words.”  Then Sam would prompt, “I want…” and wait for Isaac to respond.  Isaac was quiet for just a moment as he glared at Sam and got very close to Sam’s face.  Isaac then boomed (literally because he has little sense of volume of voice) “Must calm down.”

I hurried faster.  Clothes on, teeth brushed, hair brushed, shoes on…ready.  I tagged Sam out.  I saw his eyes.  He needed a break.  He got ready in record time and was going to take over again.
Isaac was still escalating.  I had directed him to a chair to keep his siblings safe.  I sat beside my son.  While maintaining eye contact with Isaac lest he grab me again and attempt to bite, I conferred with my husband.  “Take the others to the office Sam.  I don’t know that Isaac is ready to go anywhere.”
My husband and I are decent lip readers which is good because Isaac was now wailing and hitting himself on the head.  Sam nodded, knowing that while the children were used to seeing such scenes, it would be better for Isaac to have a limited audience.  Sam kissed me on the cheek as I continued to watch Isaac.  “I’ll be back,” my husband assured.

I was glad he had taken the other children.  I hate that these scenes are so familiar to them that they don’t even get upset anymore.  I stepped out of my body that was watching my tantruming man child.  All of this seems so wrong and yet there is nothing to be done differently.  Isaac was exhausted.  He was angry and frustrated and didn’t quite know why.  He could not understand if I were to use words to reason with him.  All I could do was sit beside him and direct him to stay seated and to end his tantrum.  We continued this ballet for thirty to forty minutes.  Isaac would throw his hands out to hit me.  I would catch them in my own.  “No thanks Isaac.  I do not like it when you hit.  All done fit.  Hands in lap.”  He would comply but would continue to scream.  A second later, the drama replayed and we repeated our choreographed steps.

Sam and the kids were back.   The ranger wasn’t there.  We had missed the morning office hours.  He would be back in another hour.  Sam had not wanted to leave me alone for too long.  He trusted me but he loves me.  “I’m ok,” I assured.  I continued to watch Isaac while Sam got lunch together.
Isaac saw the food and began to calm himself.

“Are you all done with your fit?” I asked.

“Yeah” he replied.

“Go eat your lunch.”

He ran to the table while I directed my other children to scoot over and give Isaac plenty of space.  Isaac has pinched them from time to time.

We finished eating.  Sam and I conferred.  Isaac was holding steady.  He was fragile and might tantrum again but he was ok right that minute.

We decided to all walk to the ranger station.  The air and the exercise might be just what Isaac needed.  Let me clarify.  The outside exercise might help Isaac.  He had already paced miles around that sofa.

I went to Isaac offering the trip in a first/then format.  “Isaac, first walk to the office, then candy.”  I do not mind admitting my own desperation and offering a bribe to my child.

“Candy” Isaac repeated with a lilt in his voice that betrayed his interest.
“First, office, then, candy,” I reminded.

The boy was out the door and we all hustled to catch up.  We traveled to the office in record time.  Sam paid the bill.  I looked around the office/shop while holding Isaac’s arm and repeating softly, “First office, then candy.” The ranger asked if he could give Isaac his prizes for the Jr. Park Ranger programs he had completed.  “Today might not be the best day for that,” I advised knowing that we had several more days to camp.  The ranger was amenable and wonderful.
“I’m here when he’s ready.”

“Maybe we’ll try tomorrow.”  My voice was hopeful.  I was praying that this current mood would be the peak of difficulty for the trip and that Isaac’s mood would reshape itself quickly.  The children got moon pies and sprites.  We took them to the porch to eat.  Isaac finished in ten seconds and was beginning to get antsy.  He had been to the office.  He had eaten.  It was time for the next big thing.
 We managed to mollify his behavior by taking his picture on the slide of the playground that was mostly abandoned.  One family moved away at the sound of Isaac’s sound effects.  That was really for the best.  I do not want him to hurt other little ones.  A few times down the slide, a few pictures – and off we went back to the cabin.

We approached bedtime in an attitude of cautious optimism…and prayer.  Please God let him sleep tonight.  We can’t do much more of this.  We had supper and then wound the evening down with a quiet fire and roasted marshmallows.  The rest of us were exhausted.  Isaac was still pacing and running around the sofa.  Please, please, please God, we begged the Almighty.  The others fell asleep.  Isaac was still up pacing around and around and around his sleeping sister on the pull out.  That was about 10 o clock.  Around and around and around he went.  It was now midnight.  Sam and I were exhausted.  We prepared for bed and laid Isaac down too.  He popped up every two to three minutes announcing the upcoming days on the calendar.  Not only was he awake, he was upset with us because we were lying down.  “Get up.” He commanded.  “No” I breathed into my pillow.  He lay down, talked about the calendar, sat up and demanded us to rise and start the day.  There is such a point of bodily exhaustion that you fall asleep no matter what is going on around you.  I dozed off for a minute and woke with a start and a silent scream as Isaac had come around to my side of the bed and had his face three inches from my own.  “Isaac Asher.  Bed.  Now.”  He immediately responded to the fear and anger in my voice.  “No,” he said as he tried to pinch.  I put on my best mama stare …that was possible for the moment.  “I need for you to lay down now.”  He knew that tone.  He complied, though I could tell he wasn’t happy about it.  I nudged my husband to let him know I was taking the night shift with Isaac.  When Isaac got up again…moments later, I took him to use the restroom and then on to the front room.  We finished a few pillows that night….and then Isaac began his run again around the lane he had established for himself around the sofa.
When dawn came, Sam got up and I went to bed.  It was Thanksgiving.  I was thankful for the relief and for the bed.
The pattern seemed to be about 48 hours awake and a cat nap or two on the third day.  I could recount the entire six days for you and I am tempted to do so.  I am tempted to give a six day play by play only so that you will understand the nonstop nature of autism and the behaviors associated with it.  My other children have taught me that childhood is an incessant adventure.  I know that parenthood and child rearing is an all-consuming endeavor.  Still, with Isaac, with autism, there is a difference.  Most children give in or get distracted.  The obsession driven by Isaac’s autism and exacerbated by his ability to formally decry sleep is enough to drive even the most patient parents to their knees.  You submit your sanity and hold tight to the single thought of this very minute.  I can do it…whatever I need to do….this very minute.  I refuse to think about the next moment, thank you.  I don’t have the capacity for it.  I will think, I will give, I will be, I will hold on to this very moment…and I will get through it.  We will get through it together…me, Sam, Isaac, and his siblings…this hodgepodge…this family.  We will be fine…this very moment.
That is the strategy that has worked and continues to get us through.  Moment by moment, we carry through.
We stayed through the entire vacation.  We modified our hiking plans but we did small hikes.  We made campfires and roasted marshmallows.  We had s’mores.  We laughed and talked.  And then, we went home.  We did not cut the trip short.  If we had, Isaac would have realized that his behavior had altered his circumstance.  That could not happen if we were to ever have a successful outing.  We went home at the appointed time.  Isaac was calmer but still escalated.  It was Sunday night and tomorrow was First Day.  He wanted us to twist time to meet his desired end, First Day and a present.  I am good but I cannot pull that off.  He had to wait.  Isaac was not thrilled.  He went upstairs to his room and tried to calm himself by watching his favorite videos.  We breathed a sigh of relief.  Then we heard him jumping and yelling again.  He bounded down the stairs and grabbed my arm to pinch it.  “No thanks, Isaac.” I replied.  Sam helped.  “Sit down.  What do you want?” Of course we knew, but I now had time to call Isaac’s siblings and get them downstairs and within sight of Sam and me.  We could keep them safe if we could keep eyes on them.  The others were down and Sam proceeded with Isaac.  “I am going to make dinner.  Dinner at 6:30.  Go play until 6:30.”  Isaac frowned but obeyed.  I turned to the others.  “Isaac isn’t in the best mood guys.  Stay down here till after dinner.”  They complied and Isaac kept up and down the stairs every three to four minutes.  Sam cooked.  I stood beside the kitchen entry and greeted Isaac every time he came down.  “What do you want, Isaac?”  “First Day,” he replied an inch from my eyes and in a very loud voice.  “I’m not going to talk about that Isaac.  What do you want?”  “Dinner,” his second choice.  “Dinner at 6:30.  It’s 6:10 now.  Go play until 6:30.”  He went upstairs and then came back.  The scene played out again and again and again.  The other children either did homework, played or read and watched as sometimes Isaac’s frustration bubbled up into behaviors.  He tried to bite and pinch.  He hit his head.  He hit me.  He yelled his frustration.  I kept repeating my lines.  Finally, 6:30.  Sam had set an accurate time.  Dinner was ready.  We all ate.  Isaac looked up, “First Day.”

“Time for bed,” we flatly responded.  This excited him because First Day was within sight.  He knew that when he woke, it would be First Day.  We completed the bedtime routine for everyone and then listened.  Isaac quickly fell asleep.  He had finally fallen victim to an exhaustive intensity prolonged throughout the week.  We all fell asleep soon after.
5:30 in the morning and time to start the day.  Isaac awoke with wide eyes.  “First Day.”  “Yes, Isaac.  First Day.  Go to the bathroom.”  Some things need doing no matter what day it is.  He was up, pottied, cleaned, dressed and down to breakfast in what seemed like seconds.  There was his First Day video….a used VHS tape of a preschool band that he loved.  He shook as he opened the case.  He held it, then looked to our exhausted and exasperated faces.  “January.  First Day.”
Sam and I got another cup of coffee.

Wednesday, October 22, 2014

The Real Cost of Services

“Excuse me?” I asked.  I absolutely must have misheard.

He repeated it.  Nope, I had heard correctly.  I took another moment to process the words.

“So how much do you get paid for taking care of Isaac?  He has autism so it’s got to be close to $40,000 a year, right?”

My eyes spoke before I had a chance to utter any audible word.

“Seriously?” I finally replied.  “No, we don’t get any money for taking care of our son.”

“Oh really, well you get lots of services then I guess.”  Oh my good gravy, was this guy for real?  I scanned his face.  Sadly, he was asking honest questions.

There is for some a thought that those who have profound special needs get special treatment.  Some people think that those with special needs get an inordinate amount of special treatment.  Let me be the first to clear this up.   They don’t.  It really doesn’t make sense historically or culturally to suppose that they would.  Think about it.  What society or time period have you ever studied that has or had a reputation of giving too much to those who have special needs and cannot work or earn for themselves?   Humans are by nature selfish.  We fight the urge, but we as a species have never been known to be overly kind to the weakest around us.

As society has become more cultured, laws have been enacted to make sure that those with special needs have some protections and services.  Think about that concept.  Laws are responses to identified problems and inequities.  If society had been doing a grand job at taking care of its special needs population, laws mandating and specifying services would not need to exist.

Services though are a double-edged sword.  I speak obviously from a personal point of view as Isaac’s mama.  I am grateful for services for my son.  I fight for services for my son.  I detest services for my son.

Isaac has a lot of needs.  I have never shied away from that fact.  His needs mandate that I seek services of extra incontinence supplies, the assistance of a personal care aide and a variety of therapeutic and medical care.  Each of these services benefits Isaac.  He needs incontinence supplies to keep him clean at night.  He needs a personal care aid to maintain eyes on him at all times so his safety is ensured.  Isaac certainly needs to be followed by professionals to meet the medical and developmental aspects of his autism.  I am grateful that he qualifies for each of these services.  I have fought tooth and nail for each of them over the years.

Still, I hate these services and I would get rid of any and all of them if I could.  Help always comes at a price.  The usual price nowadays is privacy.  In order for Isaac to get any of these services, I have to open my home up again and again and again to supervisors and nurses and supply representatives.  My house becomes other people’s job site.  Stop for a moment and process that.

Your home is your safe spot.  It is the physical representation of everything you are.  You surround yourself with art, pictures, memories, hopes, preferences, hobbies and passions.  Your home is yourself.  You retreat to your home and hope to break away from the rest of the world.  There are demands there but they are demands that you create for yourself because of what is important to you.  A home is a place where you can drop away any pretense and be your true self.  It is a haven for you and for those you hold most dear.  It is a safe place to refresh before you venture back into the world at large.

Isaac’s services, though necessary to him, demand our privacy in exchange for aid.  Case managers call and make appointments because they must see Isaac in his home.  We must be interviewed from time to time to make sure that Isaac’s needs are still substantial enough to warrant services.  Delivery people must personally deliver supplies into my hands and I must sign off on those supplies.  That means more appointments.  Therapeutic appointments are kept here in my home mandating therapists and supervisors each make appointments and come at regular intervals.  The personal care aide is here every weekday on a regular schedule to help with Isaac.

I knew it was bad when we started calling the driveway the parking lot.  Honesty spoke.  Our driveway was a parking lot and our home was the place of the business of Isaac’s care.  I knew this the first time a therapist came in without knocking and reported for work.  There are not words to say how invasive that was and how horrible it is to give up all privacy.

When services are implemented so heavily into your home, all privacy is gone.  Someone is there to observe almost every moment.  You are observed in how you speak to your children, in how you handle chores, in how you manage behavioral shaping, in your values and traditions, in your marriage, in your parenting, on your bad days, when you or someone else in the house is sick, or frustrated or disappointed.  In every emotion, in every moment, in every action, in your home, you are being observed.  And generally notes are being taken too.  Most of these folks are wonderful people but they just don’t belong here.  They are needed here…but they do not belong.  They know it too.  Its awkward being in someone’s house as the family is assembling together after a hard day.  It’s strange to sit with them at dinner and to hear the intimacy of their dinner conversation.  The situation plays like a puzzle piece that doesn’t quite fit.  Aid is needed, but the presence of anyone other than your family in certain moments is uncomfortable for everyone.

I do not view Isaac’s services as a special privilege and would certainly not request them if they were not needed.  This is not us demanding special treatment because we think we can get it.  It’s about services being given when they are necessary.  Services are by no means free though they cost us no money.  They cost much more than that.  They cost us privacy.

Thursday, October 16, 2014

The Happy Hermitage

You look around one day and you realize that you're isolated and alone except for those that you hold most dear.

What happened?

Autism happened.

My husband and I got married right out of college.  Then it was on to grad school and soon after I was teaching.  We were still quite young in our marriage when we knew we were pregnant.  The months before and just after I had Isaac were full of social interaction.  I was out for church, school and career.  Everyone wanted to be around a sweet young couple and everyone everyone wanted to be around this beautiful baby boy.

But then the behaviors started and over time the differences became more apparent.  The same people who had congratulated me on a job well done before Isaac's struggles were noticeable were now asking me what methods precisely I was using to bond with my baby.  They wondered to themselves and then out loud what was wrong with my child and by extension what was wrong with me.  They wondered audibly what instinctual mothering error I had made to have a child as different as Isaac.

Diagnosis came.  Old friends were scattered as collateral damage to a schedule now full with Early Intervention, Speech Language Therapy, Occupational Therapy, Physical Therapy, developmental appraisals, genetic screening, Applied Behavior Analysis Training ,  ABA Therapy, Picture Exchange Communication seminars, Autism conferences, school meetings, etc., etc., etc....  Even those friends from our old life who tried to hold on to us were eventually swept away by this deluge of therapies and official sounding acronyms that pulled us away from the typical and into the special.

They were replaced by therapists.  Our house was now always full of people but they were people who were being paid to be with us.  Think about that.  In the same way that it would be difficult to call a psychologist a true friend knowing that at the end of the hour they will abandon you to your troubles, it was difficult to establish true friendships with the well intentioned folks who came to our house to work with our child.  Besides, those therapists who visited were not there to see us...they had come to see Isaac.  They would knock, be greeted, gather notebooks and various toys which were the tools of their trade and head to the nursery closing the door behind them.  I kept Eva and/or Jonathan in the other rooms as quietly as I could so as not to disturb the work going on beyond the door.

Over time, the school assumed the therapeutic role.  At three, Isaac enrolled in the Preschool Children with Developmental Delays program and most therapies occurred there.  Not even the therapists visited.  And yet, we couldn't go out.  The school schedule was atrocious to contend with and had me and Isaac's younger siblings back and forth across town several times a day.  As Isaac got older, his behaviors were more pronounced and the differences were more apparent.  We gathered more stares wherever we went and Isaac felt the looks too.  Isaac showed his mutual disapproval to those who were judgmental by increasing his tantruming and meltdown behavior.  Slowly, became easier to stay home.

We unconsciously gave way and adjusted our lives to our son.  We retreated further and further away from the society who sought only the beautiful and the happy and the well-mannered.  We did not fit in and there could not even be the pretense that we did.  Our public escapades would at best be spent on alert so we could recognize any antecedent of potential meltdown.  At worst, they would result in tearful reminders that the world could be cruel to those who were out of sync and different.

There were outings we had to make.  We met with the school to discuss Isaac's educational plans.  It seemed as if the school was always on a different page as far as expectations for Isaac and their willingness to include him in the greater school community.  For better or worse, these outings to negotiate services with the school were hardly ever amicable.  We prepared for them as one would prepare for a hostile takeover.  We researched and rehearsed and then met to advocate and advance services for our son.   We were often challenged.  Our intellect, our expectations, our understanding and even our care for and parenting of our son were alternately challenged.  We made our arguments and then retreated to the safety and peace and isolation of our home.

Our children were becoming increasing isolated too.  Isaac is a sweet guy but his behaviors are loudly evident.  He made odd noises and utterances and did so at great volume and all through the day and night.  Children we passed in Wal Mart were afraid of our son.  There was no reason to think that our own children's classmates would be any different.  In order for our children to have anyone come over for a playdate, I would first have to call and vet the parent.  I would introduce myself and tell them how happy I was that their child and mine were getting along so well....and then I would have to let them know about Isaac, his autism and the behaviors associated with it.  I would answer all the parent's questions about autism and try to feel out if they were still interested in having their child associate with mine.  If they were, then I moved into my educational mode whereupon I provided children's books that talked about autism and asked the youngster's parent to prepare their child to meet my boy.  To my great surprise, a few mamas actually agreed and we did have a few successful playdates.  But, it is psychologically difficult to go through all of that in order to have a friend over.  It was difficult to trust others with intimate knowledge of our family not knowing if that knowledge would be received with compassion or with cruelty.  It was easier on our hearts and minds to keep to ourselves.

It was a momentous affair to be able to go to church on Sunday morning.  We managed that with the help of some sweet volunteers but even that was challenged when Isaac's behaviors erupted further during his middle school years.  He began to pinch and bite the volunteers and for a scary moment I was afraid we would never be able to go outside the safety of our walls again.  Thankfully, his behaviors quieted somewhat though I would never be surprised if they resurfaced.

It was easier to let just one parent go to the grocery store and out to do any errand.  We passed on almost every outside opportunity for scouts and youth groups.  It was just too hard to manage how we would get one child to the event, appease Isaac for an hour or two and then come back to retrieve our other child.

Years pass...and I find that we are alone except for ourselves.  There are some advantages.  It is easier.  Much, much easier.  Isaac knows his way around here.  His needs and wants can be met without monumental effort and planning.  Our home is designed for him.  The children at least still get out to school and so have friends there.  They do get a chance to interact socially.  Thankfully, our children get along well with one another and genuinely like each other.  They play together when they are home.  We are a team.  My husband is my best friend.  I wait until he is home and then I talk his ear off.

Technology and my own penchant for writing have been welcome outlets as have weekend outings to the parks.  Our park adventures can still be difficult as we cope with Isaac's needs outside of our home, but at least there are few people there and the woods and its occupants do not care if Isaac loudly echoes all the lines from his favorite cartoons.

It is lonely and yet it is safe.  There is a yearning to get out and then a realization that I think I have forgotten how.  There is a point that even phone calls become foreign.

I don't write for pity.  Please understand that.  I write to give you a peek into our lives because unless I write it, you won't know.  Autism is a disorder of isolation.  It affects Isaac surely...but it affects us all.

Tuesday, September 30, 2014

Isaac Was Here! And Why That Matters....

The school psychologist winced.  I don't think I was supposed to see, but I did.  She was just about to interpret Isaac's expressive communication skills but she inadvertently paused.  She ever so slightly winced.  She could tell that Sam and I were involved parents.  She could tell we were intelligent.  She had read Isaac's history.  Both Sam and I had advanced degrees.  We had sought early intervention, maintained a forty hour ABA program, and participated in Occupational, Speech and Physical Therapies.  Our weeks had been devoted to achieving the maximum benefit of intervention since we understood that Isaac had difficulty learning and even more so once we found out that he had autism.  She knew that, and yet her job was to interpret these test results.

She explained that people with autism generally have scatter skills meaning that some skills may be rated above average for their age while others are greatly impaired.  She cushioned the blow but she could not stop it from falling.  The data was unsympathetic and unchanging.  At this evaluation when Isaac was five, his expressive language skills were rated at about a six month level.

The psychologist was correct.  Sam and I were intelligent.  We were educated.  We were involved.  We had already known....but her words attacked us like shrapnel.  Language is powerful.  Knowing a fact and hearing it uttered are two entirely different things.  We continued to listen to the report.  I heard something else too.  She did not communicate it verbally, but I heard it clearly.  Isaac was not to be a Temple Grandin.  Isaac was not responding rapidly or well to all the interventions we poured into him.  Isaac was not "recovering."  The results of the psychological bombardment do not represent omniscience but they must be respected for what they are.  Isaac's autism was indeed pervasive.  Isaac's autism was and would be life changing.  Isaac's autism was disabling.  At that moment, I believed Isaac's autism was defining.

Now Isaac is almost 16.  Isaac's language skills have improved but they are still limited.  Isaac has made so much progress but he will not "recover."  He is no Temple Grandin.  He does not have high functioning autism nor does he have aspergers.  His autism is pervasive.  It is life changing.  Isaac's autism is disabling.  I suppose Isaac's autism is defining but not in the way I was prepared for it to be.
I feared that Isaac's autism would stop his contribution to the world in which he was born.  I feared that this neurological difference would rob him of his inherent right to make a stamp upon the earth, to let history know that he was a part of it...that he was here.  I feared autism would take away his importance.  That was what we were being prepared for by well meaning professionals.  That is what I could not stand.

Isaac was here.  He was a part of the world and of the family of humans who inhabited it.  My son mattered.  That is the battle we as Isaac's parents have continued to champion.  During those early years, we championed the ideology of Isaac's personhood by bringing large pictures of Isaac to his IEP meetings where large parts of his future were planned.  We did it by having a party at the anniversary of his diagnosis.  We celebrated all that he had accomplished during the year by making posters that read "I Can.....Write My Name" or "I Can....Cut With Scissors."

Ideology is a first step but one must move into the tangible world to create a real difference in it.  We championed Isaac's personhood in real ways as we collected school supplies at those autism anniversary parties and then gave them to the child development program for children with special needs.  There were boxes of markers and crayons and construction paper and enough copy paper to write twelve volumes on child development.  Isaac's academic progress was maddeningly slow...but his fingerprint on the planet was growing exponentially.

Here's a secret.  Here's why every parent is driven to see that their child matter.  Our children are our legacy.  They are that piece of us that we give the world.  Our children are made from the very pieces of our soul.  If they don't matter to the world, we don't either.   That may seem selfish to put into words.  I have a talent for saying out loud what everyone else knows but won't say.  My push for Isaac's personhood had to meet success.  He had to matter.  I had to matter.

And so last year, we started I Can for Isaac...the blog and the facebook page.  The list of things Isaac could not accomplish was growing.  Think for a moment of all the skills a typical youth should acquire.  Isaac has almost none of those.  Still, I look at my son.  There is intelligence in his eyes.  There is will and life and stubbornness too.  He wants to matter.  I want to matter.  There had to be a way.  I tried to think of the ways in which Isaac is gifted.  Even those individuals with severe limitations are gifted.  I watched my son and his goofy grin.  He had accomplished the task of changing the clothes out of the washer and into the dryer.  "Great Job!" he congratulated himself.

That was it.  Isaac Can....Encourage.  Isaac can give the light of innocence and the radiance of encouragement and love to those who need an injection of joy.  One thing was certain. We all face the shrapnel of sharpened unfeeling facts every day.  There are many reasons we may not want to face another minute.  We all need an infusion of joy and hope and love and encouragement.  My son had that gift and had the ability to share it.  He had had the calling to share joy and encouragement since before he had even been born.  I remembered back to my own childhood.  I remembered stumbling across the names "Isaac" which means "Laughter" and "Asher" which means "Happy" and thinking of what a wonderful name that would someday be for a child of my own.  Isaac Asher was here and in spite of all his documented limitations....he was gifted.  He was gifted in sharing the lovely intangibles without which the world would cease to exist.

And so....I Can for Isaac...and the amazing opportunity to bless over 800 people everyday with love and hope and joy...with a healthy dose of Happy Laughter.  Isaac enjoys making the videos and seeing his picture.  He spies my camera and says, "Big Smile!"  He knows his talent.  He knows his purpose and like all those who are truly gifted in a certain area, he relishes the opportunity to do what he is very good at.  I Can for Isaac.  Isaac Can for us.  Isaac Can...start your morning with a good morning song.  Isaac you a silly story.  Isaac Can....giggle and grin.  Isaac Can...create a First Day holiday.  Isaac Can...inspire Pizza Friday.  Isaac a mascot Chris the Penguin and inspire you to adventure with that same penguin in honor of Isaac and to benefit your spirit.  Isaac Can...Inspire, Encourage, Hope, and Love.   Isaac Can...Help You to Do the Same.

Love You Friends!  Bye!

Friday, September 26, 2014

The Words Were for Me

We bought the book right before Isaac was born.  We searched the bookstore shelves, found it and lovingly read through the pages once again.  We approached the checkout with the book and my protruding tummy.  There was no doubt who this book was for.  The girl at the counter smiled and offered her congratulations.

We hurried home.  I put the book on the kitchen table.  The words of this children's book were so wonderful.  They would comfort my child with their rhythmic pulse as a baby and would inspire the child's dreams as he or she pursued any endeavor throughout life.

I let my eyes ingest the title, Oh, the Places You'll Go.  I read the title again as I rested my hand on my abdomen.  I smiled that sweet contented smile of motherhood.  I'm sure I was beautiful at that moment...I hope I was.  I was awash with excitement and wonder.  I opened the book, found my place inside the front cover, and wrote to my unborn Isaac Happy Laughter...

"Isaac, Your Dad and I got you this book knowing that you will go far and experience many successes...We will be with you as you achieve...we will be proud of you...

We will also be there with love and support as you fail and try again.  We love you and always will...

No matter what.

With all our love Sweet Isaac...

Mom and Daddy"

I stumbled upon the book and the inscription by accident this afternoon.  I had forgotten the note was there.  Isaac is almost 16 now and I remember that young mother eagerly awaiting her young child, delicately writing, passionately promising....and I sigh.  I am so glad I didn't know what was to come. That sweet young mother to be would not have known how to process the realities of the future.  I still don't know.  I look back and see innocence.  I look at myself now and am ashamed at how thick skinned I have become.

I read Seuss's story now.  It takes on a whole different meaning- a whole different set of meanings for Isaac and for me.

I'm taking these moments now and reading back over the pages.  I see flashes of our journey together thus far.  That young mama who wrote the note to Isaac had no way of knowing that the pages she thought were full of wisdom for her child...were really meant for her.

It takes on a whole different meaning now.  I cringe at the pages that openly describe the struggles, the heartache, the fear....Who knew Dr. Seuss could be this foreboding?  I stumble through the pages battling sadness and despondency...until the promise on the last page...

It is the answer to my daily heart cry of will I make it through this sometimes very dark and mixed up maze....

"And will you succeed?
Yes? You will, indeed!
(98 and 3/4 percent guaranteed.)

KID, YOU'LL MOVE MOUNTAINS!" more page.  An admonition to go along with the promise...words to spur action...words to push this mama through.

"'re off to Great Places!
Today is your day!
Your mountain is waiting.
So...get on your way!"

OK.  Here I go.  Moment by moment and step by step.  Off to conquer my mountain.  What about you?

Tuesday, September 23, 2014

First Day

Isaac loves calendars.  Scratch that...Isaac ADORES calendars.  He lives for calendars.  He obsesses over calendars.  He goes to bed with a litany of "Tomorrow morning", "Tomorrow is", "Tomorrow is Thursday."  "High School Tomorrow."  "Pizza Tomorrow."  Even when there is nothing particularly exciting on the calendar, Isaac still celebrates it in some way.  He recognizes the dance of the sun and the moon even if it is only to say "Tomorrow morning."  "Oatmeal tomorrow."  The passing of the squares is the constant in which he settles his existence.

We noticed about a year ago that Isaac had extreme sleep difficulties that peaked during the last week of every month.  He was all but bursting with excitement.  He could not sleep, was bouncing and jumping all night long for thirty six hours straight.  He would then cat nap on the bus and be at it again.  It took a while to trace the source of his concern.  The calendar was about to change.  The month was about to exit and a new one stood waiting in the wings.  Two days before the first of every month, Isaac obsessively went from calendar to calendar turning the page unable to take the excitement any longer.  Any attempt on our part to put the calendar to rights bade him get up and change it again.  Then he began to take all the calendars and keep them safely turned to the new month in his room.  It was horrible.  We couldn't keep any appointment straight.  He would hijack our computer and try to change that date as well.  He filled up every square with something.  "Oatmeal" "High School" "Sunday School" "Mom and Dad", etc, etc....

There was nothing we could do.  So you know the old adage...If you can't beat them, join them.  Fine.  We could celebrate the marking of months too.

And that is how First Day came to be.  First Day is the First Day of the month.  It is to be celebrated every month on its arrival.  Treats are entirely optional though encouraged.  Present is mandatory.  I do say present in the singular.  First Day is celebrated with only one present.  It is First Day after all!

I admit, First Day was invented to placate my son and to redirect his intent obsession with the passage of time.

But First Day came to be a wonderful celebration.  Why do we wait for a new year to initiate new beginnings when each new month gives us such a wonderful opportunity?  Why do we remember to be better and do better and serve better only annually?  No, Isaac was right.  We should take advantage of the more mundane monthly event and mark it as something special.  We should christen First Day.  First Day gives us another opportunity to reflect and reevaluate.  First Day is full of hope and adventure.  First Day refreshes us.  It shuts the door on our recent mistakes and miscalculations. First Day waves us forward and bids us try again.  First Day is a day to celebrate.  It is a day to forgive ourselves, believe in ourselves and rally forward.

Perhaps Isaac is a philosopher.  Perhaps he understands the importance of forward thinking and constant betterment.  Perhaps he understands the toxic nature of living too much in the past.  Perhaps he is calling us to "Try Better," and "Get to Work".  Perhaps.  Who am I to dispute that?

Let's follow Isaac's call.  It's almost First Day.  How will you mark the day?