Freaking the @#$%#$ Out

Pardon me while I spend the next seven days trying not to freak the $#@#!$ out.

My son, who is on the autism spectrum, came home a few weeks ago with the results of his eye exam at school.  Here in the Northeast, we are fortunate to have nurses in every school and they run vision screenings  once a year.  Michael’s are always fishy.  They always send me a note saying I need to get his eyes checked out.  But the pediatrician always says that his eyesight is fine at the well child visits.

A few years ago I decided I better take him to an eye doctor, because I wear glasses, and so does my husband.  My husband’s eye problems are very minor and he didn’t even start wearing glasses until he was in middle school.  But mine are severe.  I’ve been wearing glasses since I was two, and my mother was partially blind in one eye.  I have astigmatism, extreme lazy eye and am far sighted.  So I figured I’d better get an eye doctor involved since there were questions.

Michael’s visit was a disaster.  Three year ago, I think it was.  Since Michael is on the spectrum, you can imagine what the bright lights, the asking of questions by strangers, the dark rooms and the strangers in the waiting room brought us.  But the worst was the drops to dilate his eyes.  I ended up having to hold him down on the floor so they could be administered.  And after that?  He was not exactly compliant with answering the questions the doctor had.

Still, the doctor gleaned enough information then to tell me that he didn’t believe M needed glasses at all.  I was shocked, but relieved at the same time.

Fast forward till a few weeks ago.  Michael gets tested again at school, and comes home telling me that he mostly sees out of only one eye.  This is classic lazy eye talk, so I promptly seek out a new eye doctor based on friend recommendations (since the other one didn’t exactly handle M’s freak out very well) and make an appointment.

The whole appointment was going about how I expected.  The doctor was, as promised, fabulous.  Funny, caring, really careful knowing Michael’s issues.  Michael is also older now, so much better able to handle his discomfort.  There was lots of reading letters, looking through various lenses, and I was sure that they would be writing me the script for Michael’s new glasses.

Except, no.

Michael’s vision is nearly the same between the two eyes, and both are below the threshold for needing correction.  He doesn’t need glasses.  But he definitely is favoring one eye over the other.  The question is, why?

The doctor was perplexed.  Normally, lazy eye comes from disparity in vision between the two eyes.  One compensates for the lack of ability of the other.  But that wasn’t the case with my boy.  Either his eyes had been much more disparate in the past and he hadn’t been able to communicate it, and now the eyes are growing and changing and becoming less different, but the habit is in place.

Or.

Or this is a recent occurrence.  In which case something else is going on.

There’s no way to know.  M says that it isn’t recent, that he’s always been this way, but it’s hard to know, because his concept of time is not the same as the rest of us.  Also, he never was able to communicate clearly about much until the last few years.  His teachers never have thought (even last week when I asked them) he had a vision issue.  He’s never had headaches or crossed eyes.

So, we have to find out if there is “something else” going on.  Which means an MRI scan at the hospital, next week.  With M’s issues, he’ll have to do it under anesthesia, because there’s no way he could lay still for the amount of time he’d need to.

It’s probably nothing.  It’s probably a situation that he’s had forever and is just being able to communicate.

I have to wait at least seven days to know that for sure, though.  And in that time, I have to be sure not to consult Dr. Google.  Because Dr. Google is scary.  He talks about things like aneurisms, and tumors and all sorts of scary things.

So I will watch, and wait, and try not to freak the #$@$# out.  Still, if you have a prayer to throw in our direction, I would be grateful.

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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.

Two Steps Forward, Three Steps Back

“You need to come to the school and pick him up,” said the voice of my son’s special education teacher on the phone.

We’d been riding a positive wave of good news as far as Michael had been concerned.  His last conference had brought me to tears; he was working on grade level, in the mainstream classroom.  He was doing well socially, making friends.  There were days when life wasn’t defined by his autism; we’d traveled to Florida by air last month without asking for the special treatment we used to to avoid lines and waits and things that my son didn’t used to be able to handle.  But now, now Michael gave us hope that someday, things would be just like everyone else for him.

But all the good didn’t come without a price.  Michael was doing well in school because he had a team of teachers pushing him this year; he didn’t like to be pushed.  I’d been asked just now to come and pick him up from school because he was too agitated to get on the bus, having spent most of the day in the school office after a tantrum in his classroom.

I walked into the school office five minutes later to find Michael underneath the principal’s desk.  I wanted to cry.

“It’s OK, he’s fine under there,” she reassured.  “Let’s talk about what happened today.  Michael was upset about the difficulty of his reading lesson, and so during class, he decided it was time for him to go home.”

I clasped my hands together, pressing them firmly in order to avoid the screaming I really wanted to do.

“He gathered up all of his things, and put on his backpack and coat, and tried to climb out the window.”

Oh, God.

“But he couldn’t get past the screen, so then he bolted down the hallway and out the front door.  Don’t worry, we were able to get one of the male teachers to stop him just five steps outside the door, but he’s getting too heavy now for most of the women teachers to handle that.”

Sweet Jesus.

“So he told us when we finally got to the office that there would be no consequences today, that he was just done with school and not coming back here ever again.  He kicked his aide and tripped her on the way down to the office,” the principal added.

Red.  I was seeing red and black spots in front of my eyes.

“He finally calmed down about an hour later, and we have been able to get him to do some work down here.  I’ve told him that he needs to come straight to the office tomorrow, and when he’s calm enough, he can go to the regular classroom.  It’s a shame; the kids really feel badly for him, know he’s having a hard time, and miss him when he’s not in class, so hopefully tomorrow he can pull it together and have a better day.”

I looked at my son, who had come out from under the table upon seeing me and hearing that his day was being described in detail.  He looked sad, and embarrassed, but also a bit angry too still.  “Sorry,” he said in a melancholy voice with downcast eyes.

I’d forgotten that mixture of fear, helplessness, anger, sorrow all stirred with a hint of shame and insecurity that came with my son’s disorder.  We’d gotten to the place where we did the therapies without even thinking about them, put the proper program in place at school, and thought we were reaping the benefits.  I felt it all crumbling and crashing down around me as I stood there, surrounded by Michael’s team, all of them apologetic and optimistic for him.  I needed to be his mother in that moment, one of the perfect ones you see on TV who knew just how to handle this type of thing.  But instead I felt like a child myself, wanting to yell and scream and have a different life, a normal life where you didn’t have to get called into school because your child couldn’t handle getting on the bus.

“Thank you all,” I said to the group assembled, trying to put on the mask, all the while with tears pricking the corners of my eyes.  “We’ll have a long talk about this tonight and come up with a plan going forward.  Now let’s get our things, Michael, and get home.”

Two steps forward, three steps back.

The Difference of a Year

“We have a pool,”  the mother of one of Melinda’s friends said to me over the phone.  “Would you like to bring the kids over this afternoon?”

Her name was Sue, and she’d been the room mother of my daughter’s kindergarten classroom this year.  I’d volunteered in the library and reading to the kids once or twice a week, and had met a few of the other mothers that way.  When I’d learned of a Daisy troop forming from one of the girls in Melinda’s class, it had turned out that Sue was one of the leaders.  I had apologetically told her that I’d be happy to help with anything while Michael was at his school, but that afterschool things were hard.

She had been the first mother who had actually talked to me about Michael and what having a spectrum child was like, rather than taking the out and ending the conversation quickly.  “I have another friend with a child on the spectrum,” she’d told me on the phone that afternoon.  “She’s been over to the pool with her son, so I’m used to it.  Really, you should come over and try and see if he can handle it.  If nothing else, you’ll have a few minutes with some grown ups before you have to race out.”

I actually was considering it.  I had been stuck in the house for a solid week since school let out.  I was potty training Michael, who at age five and a half still showed no signs of readiness for toileting.  But Michael was going to kindergarten next year, and we had to try to see if we could get him out of the Pull Ups I’d sent him to preschool in.

It had been a hellish week so far.  R was out of town, and Z was working as much as he could, and so it was just me and the two little kids in the house.  I’d bought a book on potty training the autistic child, Googled it, and tried everything under the sun.  So far, nothing had worked. Leaving him naked just meant that he would let the urine run down his leg into a puddle before he went on his way.  Sitting him on the potty chair until he peed meant literally hours sometimes of sitting there reading to him, putting on video tapes for him.  And no amount of praise seemed to make him aware that peeing and pooping was supposed to happen in only one place.  One minute I’d be praising him for finally getting it right, only to have him make five more mistakes right afterwards.

I was frazzled and exhausted.  Melinda was cranky from being kept inside on the warm, beautiful summer days.  She would love nothing more than going to her girlfriend’s house to swim.  And I could put a swim diaper on Michael and blissfully forget about the potty training for a few hours, maybe.  And I could talk to someone other than a five or seven year old.  “Alright,” I answered, already lightening at the idea of getting out of the house like a regular person again.  “I’ll be over in half an hour.”

As I started pulling together our beach bag full of floaties, swim diapers, sunscreen, special snacks for Michael (since he ate a total of five different foods right now), I wondered if life would ever get any easier.  And then it occurred to me:  just a year ago, I was in New York City, running after Rick Springfield.  I laughed out loud, thinking about how important it all had seemed:  my position, my work, what others thought of all of it.  These days it all seemed so far away, so insignificant.  Now I was grateful for a warm summer afternoon by the pool, something I’d taken for granted would always be easy, be possible.

“Come on kids, let’s get going!” I shouted, smiling for the first time in what seemed like a very, very long time.

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.

Never Normal

It was time for our monthly meeting at Michael’s preschool.   To keep tabs on Michael’s progress, his school scheduled family meetings once a month to update the parents on the progress of their special needs child.  It was at these meetings that they would make suggestions about what could be done at home, if there were any suggestions for additions or deletions to the program at school.  We’d had several last school year after Michael started the program, culminating with the Planning and Placement Team meeting, where all of the teachers, therapists and anyone else delivering services to my son would come in with suggestions for his program the next year.  It was at that meeting we discovered that our son would be going to summer school at age three, to make sure his progress would not stall with empty weeks during the summer.

“So it is official then,” I said with a heavy heart to the team assembled today.  “After your suggestion that we should see a neurologist, we booked Michael an appointment with a doctor in New Haven.  It took him about forty minutes to diagnose him as PDD-NOS.”  No need for an explanation of the acronym at this table; they lived every day knowing what all the different words on the spectrum meant.

My husband looked around the table.  “I know you’re not surprised.”

The speech therapist chimed in.  “No, we’re not.  We see it so much, we knew that he was definitely on the spectrum.  But this is a good thing,” she said encouragingly.  “The diagnosis is the first step to addressing his needs.”

The school psychologist nodded.  “So we’ll need the paperwork to put in his file,” she said.  “Can I take it now and get a copy made?”

I hesitated.  “I need you to answer me this question honestly.  Do we need to put the diagnosis in his records?  I mean, your program addresses his needs, not his diagnosis.  So his services won’t change based on putting the label on him.  I just worry so much about the labeling, and what that will do to him later.”

Michael’s classroom teacher spoke up.  “You’re right, his program won’t change.  However, we can be freer to add things to his program if he diagnosis is in his file.  It’s hard sometimes to get services when the budget gets tight; kids who don’t have a diagnosis on file will be the first to be removed from say, a speech therapist’s caseload, if we can’t point to a piece of paper and say this is why this child needs this.”

I nodded.

The speech therapist continued.  “And you’ll find as he gets older, especially when he leaves this preschool and goes into the regular student population, the diagnosis is even more necessary to get your child the services he needs.  We get some other funding for our program here, so we can offer more services to children who may or may not have a diagnosis, but once you get into the regular school, it is much harder when they don’t have a documented need.”

I looked at R.  “Well, I guess then that we should add it into his files,” I said slowly.  He nodded in agreement.

“Plus this will help you get coverage for outside services.  We definitely think that you should consider adding physical therapy and occupational therapy outside of school; Michael’s needs are so great that he needs more than we are able to provide.  Plus there are so many things, especially in the physical therapy, that we don’t do in a school setting that he needs to work on.”

I sighed.  How could there be so much my child needed that I didn’t know he needed?  I felt stupid, lazy, a bad parent for not recognizing it all before.  Michael was nearly four years old and already so far behind his peers.  How would he ever catch up?  “How long do you think,” I began, my voice catching.  “That if we add all of these outside things in, plus with the full day program you’re giving him, will it take for him to catch up to his peers?”

The speech therapist looked at me, very serious.  “I’m so sorry,” she said firmly.  “But your son will never catch up to his peers.  He’ll never be normal.  His brain just isn’t wired the same as theirs.  It’s not a matter of catching up.  The best we can do for your son is to get him to the point where he can maybe live independently.  But you need to prepare yourself.  He will never be normal.”

I wanted to run from the room, but I couldn’t.  This wasn’t a game, this wasn’t an argument. This was my son’s life, and it was time I grew up and started figuring out whatever it took to make the statement I’d just heard patently untrue.

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.

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