Summer Is Nearly Here

The sun is shining and it is nearly summer.

No, really….it is.  The kids will be out of school next Wednesday, and each day in that direction will be less and less like school and more and more like a party.  The weather is warm and the air is ripe with the anticipation of what wonders will take place this summer.

For the first time in seven years, my youngest will not be attending summer school.  He is doing well enough at school and is at grade level in all subjects, so the academic summer school isn’t necessary for him.  He’s been going to school for a few hours each week day in July since he was three years old.  I’m not entirely sure how we’ll deal with the change.  He needs structure, and routine, and he can’t be allowed to backslide on his school work.   My current plan is that we’ll have a little academic time each weekday morning, work on the homework sheets that are supposed be sent home with him.  We’ll participate in the local library’s summer reading initiative for real this time (usually we start it but it falls by the wayside by week two or three….) since he’ll need to be reading a little bit each day.  We’ll have time to do lots of outdoor things together, because his sister is going to theater camp.

My daughter is spending four weeks in theater camp, for four weeks Monday through Friday, six hours a day.  At the end of the four weeks, there should be a full fledged production of Grease to witness.  Her girlfriend did this last summer and raved about it so much.  We went to their performance, “Bye Bye Birdie” and both my daughter and I were blown away by how good it was.  I am hopeful that this summer camp will introduce her to some new people and give her a place she feels comfortable.  For all of my relief earlier this year when she fell into a group of girlfriends, that has all changed (as it often does with middle school girls).   I’m not entirely sure what has happened, but it seems that the other three girls in the foursome she used to be a part of no longer want her to be involved….and it all came to a head the last two weekends, when she discovered she’d been excluded from two of the girls’ birthday parties.  So, so, awful.  She is so insecure, like me, and makes so many social mistakes to try and cover that insecurity up.  I hope that this program will give her both some confidence and a fresh start.

This is my favorite time of year; the days are long, the weather is warm and there are flowers everywhere.  I hope it doesn’t all pass by too quickly.

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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.

Another Day In the Life

Michael lost it the other night.

It had been a good day for him, in fact a great start to the school year so far.  Last year, he stumbled so badly at the beginning of the school year, in terms of academics and behavior, that I actually phoned his teacher on Friday in tears wondering if he should have been held back.  This year, has been much different.  The behavior journal that became our communication lifeblood for the last two years has been stellar.  He’s needed minimal homework help in the assignments that have (yes, already) come home over the course of the week.  He proclaimed that “Fourth grade is much easier than third grade,” proudly, happy with his luck and circumstance this year.

So I figured Wednesday night would be an easy evening.  My husband’s cousin, who is our only family anywhere nearby, lives in the same town as we do.  A happy circumstance that occurred not long after we moved to our tiny, New England town; they’d lived about thirty minutes south of here, in the active NYC commuter corridor, but had been looking to move to a place that had better schools and a slower pace.  They’d liked what they’d seen when they came to visit us, so they purchased a home about five minutes north of us. A lovely, four bedroom home with a pool and a deck…and a well.

Wells and septic tanks are commonplace here in our tiny town, but they were so foreign to us as transplanted Midwesterners that our own home search included prerequisites that no one out here seems to care much about:  city water, gas heat and stove, and central air conditioning.  This placed us in a home that wasn’t ideal for other reasons (namely, we live on a busy street across from a cemetery), but these items were deal breakers for us.  And in the nearly seven years we’ve lived here, we’d started to question our wisdom; we could have had a much larger house on a quiet street if we’d only decided to go for a well, or oil heat.  But R’s cousin does have a well, and it went kaput two days ago.

Regardless of whether it was storm damage or something else, the family asked to spend the evening at our house.  I happily agreed, and decided upon a menu for a crowd that would simmer while her kids took their hot showers.  So I made beef stew, since it was a cool, early fall, rainy day.

I should have known.  Beef stew is food all put together.  Food covered in a sauce.  Two things that are triggers for my boy.  Food can’t touch one another in Michael’s world. It also needs to be plain; he never gets sauce, or salad dressing, or toppings on a sundae.  Never.  Why I thought this would be OK for him, I have no idea.

But my beef stew set off a series of events that started with a sad face at dinner and ended with me pushing him (all nearly 80lbs of him) up our stairs to his room so the cousins would not hear him screaming at me at the top of his lungs.  He didn’t hit or strike out at me, thank goodness, but he entered a place that I don’t often see anymore, where my sweet boy changes into an angry, belligerent child who is out of control and looking to therefore control everyone else.  It took me an hour to calm him down; I’ve learned for the most part that the only thing to do with these incidents is to ride the wave and let it peter out.  As the anger and the emotion takes control of him, he gets more and more tired until the spell just finally breaks and he returns to his senses.  At school this happens in the principal’s office or a quiet room.  At home, I had to force him up a flight of stairs and into his bedroom, a safe zone.

It will be telling to see this year if we have more of these incidents at home or at school; last year they were largely confined to school.  I worry every day that he will not “grow out of” these tantrums (though, to be fair, they happen every few months rather than the every few days or even hours that they were when he was a toddler) and that he will not be able to function in society.   But for now, we got through it, and by the morning, the storm was gone.  My sweet, smiling boy was back, and racked up another stellar day at school yesterday.  I still see the clouds on the horizon, but I am out of the rain…for now.

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.

Finding the Right Fit

I sighed as I listened to the speaker on the other end of the phone line.  “Really?  He’s going to switch special education teachers for the third time in three years?”

It was a week before the close of Michael’s first grade year.  It had not been a stellar year, by any account, from the myriad of phone calls from his classroom teacher early in the year asking me to speak to my son about his behavior (behaviors that were directly attributable to his disorder and that could have been avoided if all of the items in his Individualized Educational Program were in place) to her admission in February that she’d asked to be sent to a training session about autism because she knew she wasn’t addressing his unique needs.  “If I were you, as a parent, I’d be very angry with me, as his teacher,” she bluntly told me.  I appreciated her honesty, but it didn’t make the situation much easier.  Michael had to be carried back to class once by the gym teacher after he ran out of the room, down the hall, and outside of the building.  It had been a rough year.

Because I had been so active in our school budget process this year, I knew that my son’s current school was slated to lose a second grade teacher next year, taking his current class size of 18 and bumping it up to 23.  If Michael was having this much trouble in the smaller class, I’d said at his planning meeting, he will need more help in the larger classroom.  I also asked that the second grade teacher who had attended the special autism training be his teacher next year (I had actually thought that perhaps this was the plan all along, that she’d taken the training as a preemptive measure for the following year.  Everyone had agreed that Michael would get more help, in the form of a classroom aide.  He was also offered more time one on one with a special education teacher.

As the budget cuts started to be laid out, I discovered that another elementary school in our district was going to have fewer students in the second grade than ours. I wasn’t sure that it would be a good idea to yank Michael out of his current school, but I was also starting to get nervous about another year in a school where the teacher population didn’t seem to be as well versed in teaching kids on the spectrum.  The principal herself had told me once that my son didn’t seem “that” autistic.

So finally, one week out, I decided to call each principal and see what Michael’s plan would look like in their respective schools.  I called his current school first; of course the principal was unavailable.  I left the message requesting a return phone call and dialed the second school’s number.   I repeated the same sentence to their secretary and hung up the phone.   In the meantime, I made a two sided list, ready for the answers to all of my questions at each school.

The new school called back first.  I spoke to the principal candidly, stating that I just wanted to get a firm comparison of what each school was able to do for my son before I made any decisions.  She told me that my son would be absolutely kept with the one friend he knew that attended the new school, that she could assure me there would be 17 kids in his room, that he would be kept with the same special education teacher throughout his time at the new school.  This had been a sore spot for me, since Michael had already been switched twice at his current school.  Yes, an aide would be provided for him even at the lower class size, she assured me.  Yes, she would consult with his former preschool teachers to give him the best possible placement for success.  Yes, a bus could be provided for him.

I hung up the phone intrigued.  It all sounded wonderful, but moving schools was a big decision.  I watched the clock nervously and waited for the other school to call back.

After about forty minutes, the phone rang.  Eager to get the answers to the questions for Michael’s current school, I readied my sheet.  But it was the new school’s principal again.  She was calling to tell me that she’d already called a team meeting and decided upon Michael’s placement, based on the advice of his former special needs preschool teachers.  All she needed was my word that we were ready to switch.  I told her I was still waiting on the call back from Michael’s current principal.

I hung up with her and looked at the clock.  It had been about an hour since I’d called.  She could have been in a meeting or something.

Two hours later, with still no phone call, I called Michael’s school and left another message.  I didn’t want to sound rude, but I did request that she call me back today.  I knew from previous experience that often she would return phone calls days after a message was left.  I called several girlfriends and asked for advice.  I called a few more mothers I knew that had kids at the new school; they all loved it.  What to do?

Two hours later than that, I was getting angry and antsy.  The kids would be home from school soon, and I didn’t want to have this conversation in front of them.  Finally, ten minutes before I expected the bus, I saw the school’s phone number on the caller ID.

“This is Michael’s special education teacher calling,” the woman on the phone said.  “The principal said you wanted to speak to us.”

Actually, I’d wanted to speak to the principal.  I was irked that she hadn’t taken the time, as the other principal had, to return my phone call personally.  But no matter.  I started peppering the teacher with my preset list of questions.

“Well, unfortunately, the teacher we sent for the training last year was let go due to budget cuts.  She had the least seniority,” the teacher told me.

Strike one.

“No, there’s really no way his classroom would be under 23 students.  If kids move in over the summer, it could potentially have 24 or 25, even.”

Strike two.

“No, I’m sorry to say I won’t be his special education teacher next year.  He will actually be split between two teachers, neither of which he’s had before.”

Strike three.

I couldn’t understand how one school in the same school district could have such vastly different ways of delivering instruction to children with special needs. I thanked her for her time, and asked her to pass along the message that Michael would no longer be attending the school the following year.  “I hope you understand that this isn’t anything personal,” I stated.  “I just need to find the best fit for my son.”

“If it were me,” the teacher responded, “I’d be doing the exact same thing.  I completely understand.  I”ll pass the word along.”

I was shaking as I hung up the phone.  I hoped I was doing the right thing.

Moving Forward

I walked into the coffee shop that Saturday morning in April and was surprised to find so many people waiting there for me.

It was the weekend after our first failed budget attempt, and our First Selectman (what our tiny little town called the person who acted as its mayor) had offered to meet a group of us parents worried about the probable cut he would make offered to meet some of us for coffee.  I was astounded at the familiarity one could have with someone in a leadership role here, but the process of voting lended itself to a very open leader.

As I’d tried to get the word out on my own about the budget, I’d gradually learned others shared my feelings.  There were several women from our town’s Parents Council who privately asked me what I thought we could do to pass the budget on the next try (rather than the six tries it took the previous year).  But there were also men, fathers who were on the soccer fields on the weekends and talking with their coworkers during the week about their worries for their property values.

“I think we need to formalize our efforts here.  Create a group, a brand, use the internet to help us get the word out, and just get as many people as we can to learn the truth about what’s at stake with the vote,” said a man named Mike, whom I was meeting for the first time today. “I mean, think of how fast viral emails get passed around the internet.  If we could do something like that, we’d have a shot.”

I looked knowingly at one of my friends.  “I already set up a website before the first vote.  I could easily set up a mailing list for it; I just added a mailing list to the art studio’s website over the winter, so I know how.  Then we could just pull emails from everywhere we can of everyone we know, pool them, and start sending out information.”

“That’s great,” said another man from across the sofa.  This guy was on the Board of Education and was a good resource for facts and information.  “Maybe we could ask the PTOs for help with that; they collect a lot of emails.”

“What about flyers?” asked my friend Jessica, whom I’d dragged with me to the meeting today.  With both of us having special needs kids, we were concerned about the effects of the budget on our needy children.  I’d seen the discussions last winter and been horrified at how my child was reported upon in a book, counted as one of the “identified children”.  A board member had asked if there was any way to reduce the amount of children “identified”, much to my horror.

“That’s a good idea,” chimed in the first selectman.  “I can show you how to attach them to mailboxes without putting them in, which is illegal.  If you think about it, this really is a political campaign you’re talking about here.  Think about how politicians get elected; they get their name and message out on mailboxes, with emails and websites, with phone calls.”

“Phone calls,” I said with a level of dread.  “How would we do that?”

“You look at the voter registration lists. You can ask the registrar of voters to compare the lists of who votes; call the people who vote sometimes but not all the time.  When we get more voters, we win.  It’s the apathetic voters, the ones who don’t bother voting until they’re worried about the schools, that we need to get out for this vote to pass.”

“I think we should call ourselves ‘MOVE’,” said Mike.  “We’re Monroe’s Organized Voters for Education.  We’re organizing the voters, and we’re talking about education.”

“I like it,” I said, taking a sip of my coffee.  “It has energy. The tagline can be ‘Moving Monroe Forward.’  I can make a logo for it, put it on the website, create a brand so people remember.” Finally, I thought, all of that unpaid website work was coming in handy.

“That sounds great,” said the First Selectman.  “If you can pull this off, you will really be changing the game in this town.”

I liked the sound of that.  I liked the idea of being part of something positive, something collaborative, where I liked and respected and had much in common with the others working towards the goal.  I hadn’t been a part of something, a team, for years now.  I’d forgotten how much I missed it.

“To MOVE,” I said, holding up my cup.

“To MOVE,” the group responded, toasting the new entity we’d just formed.

Small Town Budgets

I walked into the high school library, looking for the crowd.

I expected a fair amount of people to show up to this meeting, our small town’s discussion of our school budget.  In the few years we’d lived in our tiny town, I’d discovered that funding here for the schools worked far differently than I was used to in the Midwest.  Out there, school budgets were formulated years in advance; the only time the public was asked to weigh in on an increase with a vote was when something outside of the realm of the expected occurred with the school finances.  For example, in Ohio, our school system never had a budget vote at all during the four years we’d lived there.  I’d heard that one had happened right after we left, though, and draconian cuts after its failure led to a quick passage the second time around.

In our town in CT, it was different.  Our town of 20,000 had an automatic budget vote every single year to pass the next year’s budget.  The vote had to pass a majority before the budget could be finalized.  This past year, that had taken six attempts before the townspeople had finally approved the budget.  The discussions, held in our town council chambers, brought out parents concerned about program cuts and long time residents concerned about their property taxes.  I’d attended one of the final meetings, where it was proposed that our school district cut its PreFirst program, a unique program that gave students not ready for first grade a year of preparation.  I was concerned that all of the arguing about the school budget would negatively impact the schools.  We’d paid an insane amount of money to live in this quiet little town, and the biggest reason we had was for the school system.

After seeing the budget process drag on for months last spring, I’d decided it was time to learn more about the process.  So when I’d discovered at our PTO meeting that the budget was formulated in a series of public meetings in December, I’d decided to attend.   Tonight the special education budget was to be discussed, and after seeing how much budget weighed into the offerings for my son at his planning meeting, I wanted to be sure I knew all of the ins and outs of the process.

“I’m sorry, is this where the budget meeting is?” I asked the only other person in the room.  He was sitting one of the ten chairs lined up as an audience for the ten more around a conference table.

“Yes, that’s right,” he answered.

I nodded, holding out my hand.  “Where is everyone?  I expected this to be a hot ticket in town tonight.”

He laughed.  “This must be your first meeting, then.  With you, and me, that will make the largest crowd yet for one of these budget meetings. Usually it’s all just the elected officials.”

“You’re not an elected official, then?”  I asked, now even more confused.  All of what was going to be discussed in this room very directly affected every family with a child in the schools.

“No, just a concerned parent.”  I couldn’t imagine more people weren’t interested in the process, since everyone in town had a say in the vote, every spring.  The process, I thought, demanded people know at least something about how it all went on.  Where was all the outrage I’d seen last spring when we’d voted no less than six times before a budget was finalized, resulting in hundreds of thousands of dollars in cuts.

“Me too,” I answered, watching as the board filed in.

“Grab one of those binders over there so you can follow along,” my new friend leaned over and whispered to me.  I looked to a stack of thick black binders labeled “Proposed School Budget ’07-’08”.

“I can just take one?  Really?”

“You’re supposed to.  They wish more people would take an interest in the budget process.  Maybe they wouldn’t be so quick to vote down the school budget every time they can if they really knew what was involved in it.”

I quietly walked over to the table and grabbed my own binder.  As the meeting began, my head began to swim with all of the facts and figures and commentary being offered as to what was necessary and what wasn’t.  It was going to take a lot more meetings before I understood all of it.

But I was also intrigued.  None of my peers in town knew any of this stuff.  No one ever talked about the budget except to complain about the votes.  I could already feel a spark of something growing in me, a desire to make this all make sense; not just to me, but to other people like me.

I was glad I’d come.

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