A New Reality

It should have been more momentous.

Sitting there, in a classroom last week, listening to my autistic son’s teacher tell me that he was doing well in all his subjects was the stuff of my dreams a few years ago.  A reality I couldn’t imagine, but one I hoped to attain in the far away world called Someday.  A scenario I’d all but dashed after his preschool speech therapist told me my son would “never be normal” and would “never catch up” after I’d seen their IQ testing.  He’d tested a 70, just a cut above mentally retarded.

But somehow, this is now my reality.  My son is in fourth grade, and after years of struggling to help him assimilate into the main stream, he is there.  I sat across from his teacher this year only to hear glowing after glowing report.  My son wasn’t just doing well “under the circumstances” as is usually the case.  He was simply, “doing well.”  He is on grade level in all of his subjects.  He has friends and in fact shows concern for others who are not doing well socially or academically.  He is funny and well liked.

It took a long time for us to adjust our expectations for our youngest son.  To put ourselves in the mindset of not just being parents, but being “special needs parents”, a small but mighty breed of fighters whose sole focus is advocating for and pushing their child as far as they can reasonably be expected to progress.  To accept that he might not ever live an independent life, or go to college, or hold a job, or even drive a car.  But we did it.  We were there.  It was our reality.

It isn’t anymore.

It almost feels too soon, too scary to think about readjusting our expectations and goals again.  To dare to dream that someday our son might just live, but thrive.  That we could experience days of pride and joy for him as we have with our oldest child.

For now, I will be happy with where we are.  It’s going to be a while, I think, before I know that this is new reality is going to stick.

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Playing the Game

I cornered Michael’s afternoon teacher at the end of the day.  Normally he came home on a special bus, the “short bus” as it was commonly known.  A bus that I’d sometimes had to belt him into, kicking and screaming as traffic backed up behind its red lights.  But today I was picking Michael up, because it was the best way to have an off the record conversation with this woman, off the record.

“Do you have a second?” I asked the teacher as she walked my son out of the classroom.  Only four children were in her afternoon class, a small group of children who needed intensive, specialized social speech program.  The twelve extra hours a week that Michael had spent with this woman for the last year and a half had brought my son from having no real language to being able to speak in small sentences of two to three words.  Most of Michael’s talking related to things that were concrete:  things he could see, people he could see.  He still couldn’t understand abstract concepts like plans for tomorrow or the land of make believe, but he had come a very long way under this woman’s oversight.  I trusted her completely.

“Absolutely, what’s up?” she asked, leading me back into her classroom.

“Well,” I started slowly, “At our last parent meeting we were talking about Michael going to kindergarten next year.”

She nodded.  We had brought up what that would mean for my son, who had been educated for the last two years in the special needs preschool.  He’d clearly come a long way in the very nurturing, small classroom where aides flowed in and out of the loosely structured program.  “Are you concerned about that?”  she asked me.

“Well, I just don’t know how he will fare in a mainstream classroom.  Right now there are ten kids in the room in the mornings, four in the afternoons, and aides and therapists all of the time, making the adult to child ratio really small.  And he’s done well, really well.  Do you think he can continue to progress in a regular classroom?”

I knew what her answer was supposed to be.  It was supposed to be an immediate reassurance that he would do fine.  But instead, she looked at me and turned the question around.  “What makes you think he won’t?”

I sat down in the tiny chair at the table where Michael had started playing with blocks.  “I just don’t see how he could handle being in a regular classroom.  I mean, the class size will be so much larger.”

“Sure, but we’ll plan out everything in his planning meeting.  He’ll be given whatever he needs to thrive in that setting.”

I raised my eyebrows at her.  “Do you really think that’s true?  They’ve already told me that they see him doing half days next year.  How can he continue to progress if we cut his classroom time and increase the class size?  It just doesn’t make any sense.  I know the state recommends at least twenty two hours of instructional time for kids on the spectrum in kindergarten.  Right now he gets 24.  They are talking about taking him down to 17 and a half.  It just doesn’t seem like he would do as well.”

She nodded.  “I see what you’re saying.”

“I am wondering if I should hold him back for another year in preschool.  He’s doing so well here.  Maybe if he gets another year under his belt, he will be closer to what a typical kindergartener would be like.”

I could see her thinking.  “What if he was offered a full day program, with an aide?  That would help you with the higher class size, and then he would have the same amount of hours of instruction.”

I smiled.  “Do you think that would be possible?”

She looked at me.  “I could quietly get the word out to the team that unless you were offered something like that, you are considering keeping him back.  That would probably compel them to offer you more than what they originally had planned on.”

I pondered this.  “But in the past, it has always seemed like the team has offered my son what he needed.  Obviously, he’s done well.  Why is it now that they wouldn’t?”

His teacher looked around and quietly said, “Things are different when you leave the preschool.  You lose a lot of the funding for special needs kids.  In K-12 it can be a battle sometimes because the budgets are always so tight.  You have to really be aware and make sure your child is getting what they need.” She paused and then said, “It would be helpful to you if your doctors wrote notes agreeing with your assessment that Michael needs more time than the traditional half day program.”   She gave me a long look that clearly told me she was sharing something with me that she likely shouldn’t.

‘I understand,” I said, returning her look with one that expressed my appreciation for her trust and concern.  “Thanks for the tip.”

“I’m really glad you stopped by,” she said much louder now, indicating that it was time to end the conversation.  “I’ll see you in a few weeks at Michael’s planning meeting.  I’m sure it’ll go very smoothly.”

I took my son by the hand and left the room, bewildered.  I’d heard often at my support groups of how parents had to “play a game” to get their special needs child the services they needed to help them move forward.  It was the first time I’d experienced anything like it myself.

It’s Official

It was September, and I was sitting in a small chair in a doctor’s office not far from Yale University Medical Center.

It had taken exactly one week of school before I begged the teachers and therapists for advice, help, something that I could be doing for my son that I wasn’t already doing.  He was starting to talk now, one word at a time, with a total vocabulary of maybe 50 words.  But he still wasn’t toilet trained at almost four years old, and showing no signs of being ready for it.  His meltdowns were increasing in frequency, and R and Z had struggled when I had spent three days in New York on the Rick Springfield promo tour.   Without me there to anticipate his needs before Michael hit the red zone, the days had been a struggle from this trigger to that one.  Keeping peace in Michael’s world was all about anticipating the triggers.  But how could we remove them from his world?

The therapists suggested we see a neurologist to finally get a concrete diagnosis on paper for Michael.  While his needs were clear and well documented, before the age of three no one would actually give him a specific diagnosis.  If we were to indeed get the diagnosis they anticipated, they could offer him more services and then insurance might cover out of school services as well.

I sat silent in my chair, watching the doctor go through the tests again with my son, the same tests I’d seen done on him a year ago.   The questions were slightly more advanced, but all in the same vein.  I watched with a quiet sadness as one time after another, Michael either didn’t respond to the doctor at all or responded inappropriately.  It wasn’t going to be good, I thought to myself.  I could feel the heaviness in my chest.

“Boy, they always are this cute,” started the doctor.  I must have looked puzzled, because he continued.  “Kids on the spectrum.  They are often the most angelic looking kids.  That’s part of why it’s so hard for them.  They look like everyone else so no one really understands how much they are struggling inside.”

I nodded slowly.  “So he’s on the spectrum then?”  A  year ago I didn’t know what that statement meant.  What a difference a year made.

“Oh, definitely,” he answered quickly, maybe too quickly.  He turned around his clipboard where he had been marking Michael’s responses.  Michael grunted at me, which was his way of asking for the Cheerios he knew were always in my bag.  I absentmindedly reached in and handed him the round, yellow container and handed it to him.  “Look, here’s the range of scores on the spectrum.  0 to 29 is normal. 30 to 50 is on the spectrum.  Down here, in the lower 30s, are where you’ll see Asperger’s or PDD-NOS.  Go into the 40s and you’re looking at full blown autism or low functioning autism.”

I gulped.  “And where does Michael land?”

“He has PDD-NOS, pervasive developmental disorder, not otherwise specified.  It means he has some of the classic symptoms of autism, such as the speech delay, the lack of eye contact, the oral sensitivity.   That’s here in the low 30s.  It’s good; he may end up being higher functioning with a score like that.”

My heart sank.  The therapists at school had mentioned Asperger’s.  Dr. Google had told me that outcomes for children diagnosed with Asperger’s were much higher than for kids diagnosed with PDD-NOS.  But I also knew that he wasn’t talking yet, and Asperger’s kids often talked incessantly, amazingly showing knowledge they should be too young to have, like knowing all 50 states before age 3, and being able to list them in alphabetical order.  That wasn’t my kid.

“So what does this mean for him?” I asked, looking down at his tousled, long blond hair.  Haircuts were a nightmare; he kicked the last stylist three times.

“It means you need to work harder to get his neurons to connect with each other.  The more you can do early, the better chances he will have.  You already have him in the school, which is a good place to start.  You might consider adding some therapies outside of school too, as much as you can afford.”  I made a mental note to ask the school for recommendations on what therapies would be the best to add to his already rigorous in school program.

“Will he ever be normal?” I asked.  “I mean, will he ever catch up to regular kids?”

The doctor looked at me with sympathy.  “His brain is disordered, not delayed.  It works differently than yours, or mine.  That will never change.  But yes, you can figure out how to work with his brain to help him learn.  He can learn.  And I’m sure he will.  As to his prognosis, we’ll need to see him back in a year and see how far he has progressed; that will give us a gauge as to his potential.”

His potential.  Meaning, would he ever be able to be an independent, typical adult.

I could literally feel my hopes and dreams, not only for my son but for my self as well, slip away.

Dramarama

It was late.  I was sitting at my computer desk in the kitchen, listening to the quiet of the house, wondering when I’d be done.   There were three days left before the Rick Springfield HDNet special in Illinois, and I had a million things to do.

The pressure was on, and none of the fans wanted to hear about my sad day visiting Michael’s preschool.  The teachers felt that his issues were much greater than the paperwork had indicated (which honestly surprised me; I felt the reports had been pretty starkly harsh in their descriptions of Michael’s issues) and they had recommended doubling his time at the special needs preschool.  I’d sat today behind a glass screen while they took Michael through the paces of his day.  He screamed during his oral motor therapy, he grunted during his speech therapy, he threw the healthy snack I’d packed for him onto the floor because it was different than the usual pretzels he’d expected to see there.  I’d watched him put through the paces of the occupational therapy, which was supposed to help deal with his problems with different sensations; today he was put through a huge roller machine which applied deep pressure to him.  I’d gasped when I saw it, but he crawled in it willingly, which meant he liked it.

I was mentally exhausted, and in no mood for the drama that was certain to unfold in a few days out in Rockford. The woman helping me with the charity luncheon, Helen, was fighting with another fan about the seating and the ticketing for it.  I’d had to play intermediary, which had amounted to the fan named Diana sending back rapid fire emails and calling my house to complain.  Which wouldn’t have been a huge deal, except that Diana was one of my Shock Team managers, someone on whom I was relying upon to work on promotions for the upcoming record release.  I finally had let loose on her on the phone that evening, letting her know that I had plenty of real problems to deal with, and two adults acting like teenagers was not high on my list these days.  She hung up on me in a huff, and I saw her selling her tickets to all of the weekend’s events online a few hours later.

I’d wasted so much time with the drama that I was behind with my categorization of all of the auction items, the ticket confirmations, the follow up on all of the donations that Rick and his people were going to offer us.  And while I hadn’t guaranteed Rick’s presence in any way, I was trying to arrange that as well so that we’d raise more money.   I’d designed logos for the event and needed to make sure the posters we’d ordered were on their way to the hotel.  We had to figure out a better way to give fans entry to the luncheon; it had taken an hour for some fans to check in at our last one in 2002.  How to do it?  Oh, and I needed to double check with the hotel that they would have an internet connection available to us for our auction payments.   How many tables had the hotel agreed to put out for the auction items…would it be enough?  What if the fans who had promised to donate on site didn’t come through with their items?  We had probably 60 items that fans were bringing with them on planes, and if they somehow didn’t live up to their word, the luncheon wouldn’t raise much money.

There were reporters’ emails to answer about the event, there were fan emails to answer about the event. My friend who had offered to photograph our event was concerned about lighting, and staging of all of the fan photographs; did we want to do table shots since obviously we couldn’t have each of the 150 plus fans in individual photos with Rick.  There were a few nasty notes from friends of Diana who were all going to now boycott our luncheon in solidarity with her.  I sighed and shook my head.  I needed to stop now or I would be here all night.

I looked over at the stove and read 1:26 on the digital readout.  The kids would be up in less than five hours.  I could hear R snoring in our bed all the way upstairs.  I clicked on my computer’s sleep mode button and curled up on the sofa, hoping that somehow I would feel better about all of it in the morning.

A New World

I looked around the classroom, slowly, holding Michael’s hand.  It looked a great deal like your standard issue preschool classroom:   letter block foam play area, bins of toys tucked neatly into cubbies, perfectly penned nametags pasted to the wall near coat hooks.  R stood silently next to me, his face unreadable.

“Look, Michael,” I enthused, “here’s your name on the wall!  Let’s go ahead and get out of your coat and put it on this hook they’ve saved just for you!”  Michael’s blue round eyes looked at me blankly as I eased him out of his warm, winter coat.  He stayed close to my side, hesitating to leave the comfort of my presence.

“Hi Michael, welcome!” said the teacher, coming over to greet us.  She too looked exactly the part of the preschool teacher:  sweet, round face, inviting and welcoming, with a singsong voice.  She kneeled down in front of him to catch his gaze.  Michael responded by burying his face in my leg.  She stayed there for a minute, waiting to see if he would get curious and peek out from his self imposed cocoon; when he didn’t, she rose up again to speak to us.  “It’s OK that you’ve walked him in today, but when you come on Thursday, you’ll want to follow the protocol and drop him at the door.  It’s important that he learn independence and routine right from the start.  Will he be riding the bus?”

I shook my head.  The school system had told me that Michael qualified for busing to and from the preschool, but since Melinda was already attending in the reverse mainstream classroom down the hall, it made no sense for him to be bused when I’d have to follow in the car.  We thought it might be a good idea for Melinda to serve as one of the typical peer models in her age group; I had hoped that it would help her understand a little bit how to help her younger brother.  “No, I’ll be bringing him.” I answered.

“Well don’t worry if he screams or cries when you bring him; he’ll get past it.”  I couldn’t even imagine how I was going to leave today, actually.  He never wanted to be left in the daycare at the Y when I went last year; I’d be in the middle of my time on the elliptical when the teenager would come out to find me after ten minutes of blood curdling screams.  Eventually I’d simply stopped going during the day, leaving Michael with R or Z after they got home.  It was easier.

Michael had started to look interested in the brick simulated cardboard building blocks, and so R and I started looking at each other like it might be time to make our exit.  “Should we go now?” I asked the teacher.  “Now that he’s finally distracted?”

“Always say goodbye to him,” she instructed.  “Otherwise he’ll wonder all of the time when he gets engaged in something if you’ll just disappear.  Michael, Mommy and Daddy are going to leave now, ok?”  He ignored her, as he often did when he was thoroughly engaged in an activity.  “You’ll want to talk to him and make sure he understands that you’re leaving,” she told us gently.

I looked over as the classroom aide brought in other students.  One by one they walked in, removing their coats and backpacks, finding their names on their hooks and putting everything in its place.  I couldn’t imagine Michael being able to do that.  He didn’t understand simple commands; the playroom was a wreck.

Suddenly, I saw one boy being led in by the hand; he was so clearly seriously affected by some sort of learning disorder.  His mouth hung open slightly and a small shiny bit of saliva coated his open mouth.  His eyes were obscured by ill fitting, thick glasses; his chin bobbed up and down.  On the upswing, his face looked blank and empty.  As the aide removed his coat and backpack for him, I could see the top of a Pull Up diaper peeking out from his pants.  The aide talked to him constantly, a continuous stream of commentary on what she was doing now for him.  He made some guttural noises in response, but it was hard to judge as to whether or not he was understanding any of her words.  Still, he dutifully allowed her to do what she needed to do, and docilely followed her to the carpet where the teacher was gathering the students.

I gulped as the same aide returned for Michael, gently taking his hand.  He immediately started to pull away from her, looking with a sense of panic towards us.  He clearly didn’t want to stop playing with the fun bricks to go to the center of the classroom, and he wanted to be separated from us even less.  The unhappy grunts were turning into full blown screams as she knelt down next to him.  “Say goodbye to Mommy and Daddy,” she said happily.  “I know it is hard, but you have to go now.  He’ll be fine, trust me.  Most of the kids over there were exactly the same on their first day.”  I started crying as I waved at my son and slunk out of the room.

R and I walked silently to the parking lot, where both of our cars were waiting for us; him to go to work, me to return home for a few hours before picking the kids up.  He still hadn’t said a word.  I looked at him, fearful.  “Did you see that little boy?” I whispered.  “Is that what kind of child Michael is?   Is that what our life will be like now?”  All along I’d talked myself into thinking that things were just not that bad for us and our son.  But seeing the issues of the other children at the special needs preschool brought it all home; we were on a new and very different path now.

“I don’t know,” R said quietly, sadly.  “I just don’t know.”

Special Education

“Do you have the paperwork?” asked the school psychologist, one of five people assembled around the table.

Before we’d moved, the Help Me Grow people in Ohio had told me that there was a federal law governing special needs children.  It didn’t matter where we lived, if a child was identified by the “Birth to Three” organization in that state (in Ohio it was called Help Me Grow) as needing services, the public school system was responsible for those services after age three.  If we had stayed in Ohio, a transition team would have been assembled to help us through the process of something called Placement and Planning.  During the Placement and Planning meetings, the school and the parents developed a document called an Individualized Education Program.  This was actually a legal document that guided how the special needs child would be educated.

And while Michael had been identified both by the Help Me Grow group and two different screenings done at a private therapy company and Cincinnati Childrens’ as “significantly delayed”, none of our documents were legally enough for my son to be qualified in the state of Connecticut.   Even so, I had called the school system on our second day in Connecticut, and set up a meeting anyway, telling them that he was a month away from his third birthday.  They agreed to set up a meeting and so here we were, not even three weeks into living here, around a table at the special needs preschool, discussing whether or not Michael should receive special education.

“I do,” I said, pulling out a stack of papers.  All of the Help Me Grow testing, the reports from his private speech therapist, and the two other evaluations.  “Here they are.”  I didn’t want to add that they all showed a significant delay in his speech (he still had no consistent language even though he was now 35 months old).  It was hard to even think about how serious our situation might be with him; maybe he was just late after all.

The speech therapist flipped through the Cincinnati Children’s report.  “Well it seems as if his needs are well documented,” she said, all business, with little sympathy.

The psychologist nodded, looking at the Help Me Grow report.  I knew she was noting the nine month level of speech.  “This one is about eight months old.  Would you say that his level has changed significantly since this testing was done?”

I sighed.  “No, I wouldn’t say so,” I responded quietly.  I felt like we were in backwards world here:  the worse my son was doing, the better chance he had of getting the services he needed.  I wanted to be proud of my son, tell them how unique and special he was, a smiling sweet boy.  When he wasn’t screaming at me.  When all was well in his world.  Which was less and less often these days since the move.

The occupational therapist spoke up.  “I think we have all we need here.  Your son definitely qualifies for our services.  Why don’t we start him 2 half days a week starting the week of his birthday.”

Two half days a week.  It would be so significantly more than the half hour of speech therapy and the sporadic occupational therapy he’d been receiving in Ohio.  I should be grateful, I should be elated that these strangers were going to help my son. But I could feel my throat close and thicken instead, my face growing red with sadness and fear.  “Thank you,” I responded.

It was official.  My son was considered “special needs” and was going to receive “special education”.  I gathered up all of the paperwork that proved it, said my goodbyes, and silently walked out of the room.

Pointing the Way

I sat on the floor with my little boy, him ensconced in the safe area between my legs, feeling my apprehension rise.

We were in the middle of an evaluation at Cincinnati Children’s Hospital, a screening for possible developmental delays.  We’d already paid $200 for a similar battery of mind numbing hoops for Michael to jump through at a local therapy provider, but the results seemed more attuned to them selling us expensive therapy sessions than any real diagnosis of what might be wrong with our son.

“I’m sorry, ma’am, but you can’t help him with the answers,” scolded the psychologist as I reminded Michael what a ball does when you throw it.  “He has to answer the questions exactly as we ask them, no variations.”

I looked at her, puzzled.  “But isn’t the objective to learn what he knows?  If you vary the question into a phrase that he is familiar with, he’ll be able to give you the answer you want.”

She looked at me sympathetically.  ‘I know this is hard.  But the whole point is for him to be able to do the tasks exactly in the way they are prescribed.  This gives a consistency amongst all children who are tested, and allows for an honest comparison of him against his peers.”

I nodded, cheeks flushed red.  Michael squirmed on the floor and a reassuringly rubbed his arm trying to subtly hold him in place.  I could see his attention waning; soon he would grow frustrated and start crying or worse, screaming, until I let him free from the pseudo cage I’d set up with my legs on either side of him.  “Michael,” the therapist encouraged, “What does the ball do?  Point to the picture.”  Michael blankly stared at the book of photos in front of him until he reached forward and tried to turn the page, desperately trying to find an activity that he would find interesting.

“Alrighty then,” the therapist said, writing down on her pad of paper as she closed the book.  “Let’s’ just let him play now and get to the parent part of the interview, shall we?”  She assembled some of her toys in front of Michael and watched as he took the shape sorter, a toy meant for children half his age.  He dutifully emptied it and lined up each shape, just touching edges, and then carefully placed them all in their exact right holes.

“Uh,” he grunted, holding out the full sorter to me.  I emptied it and he began the ritual again.

“Did Michael hit his milestones on time, like walking, crawling, pulling up?”

“Yes,” I answered confidently.  He had indeed.  Zachary had walked later than any of the younger two, and he was a straight A student.  What of it, I thought.

“When was Michael’s first word?”

“Um…he really doesn’t have any still.  Sometimes he’ll say something one day, but he doesn’t say it consistently.  I’ve heard him say a few words, but honestly, I think they are accidents.”

More words written down on the pad.  “And what happens if you break with his routine?  Say, you always drive a certain route home, but one day you drive a different way?  Or if you try to put on his socks first when you always do that after you dress him?”

My mind filled.  Just the other day we’d been driving home and Zachary informed me at the last minute of something he’d needed to drop off at a friend’s house.  So instead of taking the final turn home, we’d kept going straight and onto his friend’s subdivision across the way.  Michael’s screams were loud and immediate, and lasted nearly the whole ride until we came back to the place where we’d made the wrong turn.  “He definitely doesn’t like a change in routine,” I answered slowly.

“What about toilet training?  Is he showing signs of readiness?”

No, I thought.  Not even close, even though he was nearly three.  Melinda had been trained by this time.  So had Zachary.  “No,” I answered quietly.

“Does he ever ask ‘what’s that’?  Or point?”  I remembered that both of those were a constant litany during Melinda’s toddlerdom, just two short years ago.  I used to get frustrated with her constant “Wassat?” while I was sitting at my computer, or while I was driving, or during a grocery run.  I opened my mouth to answer when I suddenly shut it again.  I had to think, hard.  Could I remember Michael ever doing either of them?  Pointing?  I closed my eyes and shook my head slowly.

“No,” I whispered.  “He never has done either of those things.  I didn’t even realize that until just now, you asking me that question.  What does that mean, that he’s never done that?  Never pointed?  All kids point.  But Michael hasn’t, not ever, not once.”  I looked at her, fearful for the first time instead of just insecure.  “What does that mean?” I repeated.

“I will have to tally everything up,” she answered with the tone of a woman who has given the same test a thousand times, with the same, sad result more times than she’d like to remember.  “But I will tell you that not pointing, not asking what’s that is a classic, classic sign of autism.”

There it was again.  The A word.

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