January 31, 2011
My kids play this game called “The Deep Pit of Darkness”
Gerry, my oldest, will lay down on the couch with Howie behind him. The object of the game is for Howie to push Gerry off of the couch onto the floor, or as they call it, the “deep pit of darkness”. Gerry created this game after I told him that it helped Howie to do certain exercises that involved pushing or heavy lifting. I was thinking more along the lines of, say, wheelbarrow walking or thumb wrestling. My boys interpreted it as “Let’s wrestle while Mom is trying to make dinner.”
The “deep pit of darkness” game keeps them occupied for about 15 minutes, until inevitably someone gets pushed or kicked somewhere that hurts.
I realized that I have been in my own deep pit of darkness lately. And it’s not a game.
We have had a lot of snow here in southern New England. A lot. I’ve lived in New England for most of my life so snow in winter isn’t usually this depressing. Hell, I’m the girl who used to wait by the bus stop in high school in February with no socks. The college student who walked in -20 degree weather to class with a wet head and no mittens. I’m no stranger to winter. I love living here and am very good at ignoring Facebook posts from friends telling me how nice it is where they live.
But this has been a particularly difficult winter in addition to the weather. December brought the one year anniversary of our autism diagnosis. Our annual IEP meeting. And while we have been able to celebrate our progress up to this point, there are still reminders every day how different our lives are now.
Add all that to the many snow days and holidays this month, and I felt trapped in my house with three young boys.
And yes, I said trapped. Because with 4 feet of snow outside, it felt like the door was closed shut. My claustrophobia kicked in. Like the walls were closing in on me.
I felt tired. Tired of reading every detail on this last IEP to make sure all the words are right. Tired of managing the chaos in that runs through this house and ignoring the clutter piled up around me. Tired of pretending to care what we eat for dinner. Tired of feeling like a bad parent because I want my kids to be at school and not home with me. Tired of sitting in front of Lewis trying to get him to repeat my words. Tired of not sleeping. Just tired of everything.
I spent much of the last snow day just staring out the window, ice cold coffee in hand. The boys were arguing if it was legal to have a jet pack to get out of the deep pit of darkness. As I watched the giant snowflakes endlessly fall from the sky, I too was hoping for some way to escape this pit. I closed my eyes and imagined Dorothy’s ruby slippers on my feet, and wondered what it would be like to just click my heels and be…
anywhere but here.
I went to bed that night with a headache. The snowy weather forecast for the next week weighed heavily on my mind.
The next day the sun was out, but my mood was still in the dark pit. It was affecting everyone in the house. My husband came in from walking the dog and said “That’s it. We’re going out.”
I had asked the boys several times if they wanted to go play in the snow. The answer was always no. But my husband didn’t ask. He told them. End of story.
My mood got darker and darker through the 20 minute adventure of getting dressed for outside. Five sets of coats, boots, mittens, hats and snowpants had to be uncrumpled from the bottom of the closet from our last journey out together. Once outside, the snow was so deep that with every step I had to pull Lewis back up again.
With every step, he laughed.
And soon, I was laughing too.
My husband got out our blue plastic sled and put Howie and Lewis in it. He pulled them around the track he made in the yard and they squealed with delight. Gerry and I ran around behind them, trying to push each other down into the deep snow. A game I was winning, until my husband came up and hip-checked me right into a snowbank.
There I was. Stuck in a deep pit of white.
And behind me? A melody of giggles and calls for “do it again!”
Snuggling in bed that night, I asked Howie what his favorite thing was that day (as I always do).
“I liked playing with you. I love you.”
Won't bury himself in sand, but snow? No problem
I whispered back “I love you too.” And closed my eyes again.
I didn’t need the ruby slippers to remind me that there’s no place like home.
“Somewhere over the rainbow
Skies are blue
And the dreams that you dare to dream really do come true
Someday I’ll wish upon a star
And wake up where the clouds are far behind me
Where troubles melt like lemon drops
Away above the chimney tops
That’s where you’ll find me” – Over the Rainbow from The Wizard of Oz
January 26, 2011
“Blood is blood”
This was my Grandpa Leo’s version of “Blood is thicker than water”. He would say it every now and again, jokingly, when he would talk about his blended family. Even though I was related to him by marriage (he was my mother’s step-father), he always treated us as if we were “blood relatives”.
When Howie was diagnosed with PDD-NOS last year, I sent an e-mail to three of my cousins. All three have children who are just a year younger than Howie, and we visit with them quite often. I sent them this:
As you may know, last week we took Howie to a developmental/behavioral pediatrician for his evaluation, and today we had our follow up/diagnosis meeting. Basically it’s what we’ve suspected all along – she diagnosed Howie with autism spectrum disorder calling it PDD/NOS. Howie’s weaknesses show up in his social processing skills, mainly in terms of how he relates to others, his inability to read social cues, etc. She said that with intense therapies and immediate intervention, we have a good chance of helping him incorporate coping strategies into his everyday life so they become part of his daily routine.
While hearing the diagnosis hasn’t been all that easy for Tim or me, it’s been validating for us in a way because we’ve always known there was something going on with Howie, and now we can get him (and us) the help we need.
I’m filling you all in on this for a number of reasons, obviously the primary one being that you’re his family and I know you love him and want to know how he’s doing. I’m also letting you all know that because of all the hard work we have ahead of us, especially in the coming year, we’re going to have to restructure things at home to make life work better for Howie and us all. Kids like Howie crave structure, routine, and predictability, and Tim and I have to respect that and help him learn to function appropriately in different social settings. What it might mean is for at least the immediate future, changes to our daily routine will be difficult for us. I’m not saying that we won’t be visiting people or wanting visitors to come here, but within the confines of those changes in routine we’ll need to factor in some familiar routines for Howie and stick with them. I’m hoping that you’ll all understand and help work with us to make that successful.
So that’s it in a nutshell. We know things could be worse, and we know that all of these things make Howie who he is, and we can’t and won’t expect him to be someone he isn’t. While we aren’t looking forward to all the hard work we have to do, we are looking forward to seeing the positive changes in our family. Thanks for helping us get there.
I sent them this e-mail to give them the “out” – to let them know that if they didn’t want to spend time with us or have their kids around Howie, I would understand. It would make me sad, but I would understand.
To their credit, none of them stayed away. At all. And as I got brave enough to tell the rest of my extended family, their response for the most part has been the same. They are still here.
I know I’m lucky. And I know that this isn’t typical.
I know that for a lot of families struggling with special needs, their immediate and extended families aren’t the most understanding or supportive people out there. And for them, they’ve had to create new families of friends and caregivers who can be there when needed.
Which leads me to this. Two of my friends are about to go through some major changes in their lives. One friend’s husband is being deployed in two weeks. For a year. Another friend is having major surgery and will be off her feet for quite some time. Both friends have boys on the spectrum.
These are incredibly strong women who are about to change their whole parenting mindset. One will become both father and mother, picking up the activities that used to fall to her husband. The other will need to give up much of her motherly responsibilities in order to focus on her recovery and her health.
At our last support group meeting, we asked them how we could all help. What can we do to make things easier?
These were questions that neither one could answer right now. They didn’t know specifics about what they would need. They both just wanted to know that we all would be there if and when they did need us.
And as new members of their families, we will.
Friends are there to plan playdates, organize carpools, and bring over wine and chocolate. Family is there to do laundry, walk the dog, pick up prescriptions and be on call in the middle of the night for emergencies. Friends are there if you ask them to be, family is here when you need them to be.
It may not be “blood is blood”, as my Grandpa said. But sometimes, the family you create can be just as good or even better than the one created for you.
My Grandpa Leo
“Everyday(everday) should be(should be) a family reunion
We should speak
From the heart
And let love be the solution
Let us forgive (forgive)
Put the past out of the way(put the past out of the way)
No time to wait (no time to wait)
The time has come to give love everyday” – Everyday (Family Reunion) by Chaka Khan, Gerald Levert, Yolanda Adams and Carl Thomas
January 24, 2011
An octopus - all those arms for hugs!
I am so honored – I can’t even tell you. Thank you to whomever nominated me, and thanks to anyone who voted for me. When I started this blog last year, I didn’t start it to be inspiring. I started it so the words swirling around my head could get out somewhere, and not explode all over the next person to talk to me. I have been influenced and inspired by so many people, including my fellow award winners at Pancakes Gone Awry, I’m Just That Way and That’s Me, Hello.World, and Help! SOS For Parents. My fellow nominees (Chynna, Heather and Barb) are writers I read everyday, so check them out as well!
Speaking of inspirational, I’ve updated my blog list on the side of my home page. There’s a new list titled “You’re The Inspiration” (yes, I was a Chicago fan when I was younger, so sue me…) These are the blogs I read every day, sometimes twice. When I need a little help to get through the toughest moments, these writers get me through, with humor, grace and dignity. Many of them I now consider my friends. I’m sure I’m missing some – so don’t hate me if your blog isn’t there…yet!
And one more addition – at the top of the home page I’ve added a new page called “Cover Bands”. It’s all the other places where I write. Or have written. And hopefully will write again.
Again, a big thank you. I appreciate it more than you know.
“Once upon a time I walked an easy road
Didn’t think I needed anyone.
I could make it on my own
Never thought about tomorrow, just livin’ day to day
Never thought these clouds would come along
And bring me so much pain
When my world was upside down
I didn’t think that I could make it,
Reached out my hand for you
And you were there to take it” – Thank You by Christina Milian
January 21, 2011
“You haven’t lived until you’ve dissected a doughnut.”
Several weeks ago, I posted that as my Facebook status, and got a few puzzled comments. Most of my friends could not understand what I was talking about.
But you, my fellow parents of children with sensory issues, you understand. Don’t you?
Even Weird Al Yankovic can’t make my son eat. I’m talking about our difficulties with food at Hartley’s Life with 3 Boys today. Come check it out and don’t forget to vote for the SPD Blogger Awards while you’re there!
Click here for Eat the Doughnut!
January 19, 2011
Manny the Bear came home from preschool on Thursday. Manny was put down by the front door when we got home that day. And there Manny stayed, all nice and cozy, in his giant blue flower backpack. For four days.
Manny is the Build-A-Bear teddy bear that makes the rounds throughout the school year. Every week he is sent home with a different child in the class, complete with changes of clothes, a bed, books, and toiletries. The kids are supposed to take Manny around with them over the weekend like he’s a member of the family. And before he returns to school, the child is supposed to draw a picture of something they did with Manny, and then the parents write a description of the illustration.
Yeah. That didn’t happen.
This isn’t the first time we’ve had Manny visit us. Manny came to stay a few months ago when he was making his first go-around with the class. I was all gung-ho then. Howie and I took Manny out of his backpack, changed his clothes into pajamas, and set up his bed on the floor next to Howie’s. We even pretended to brush his teeth. Then I got all nervous that something would happen to this precious bear if he was on the floor (dog eating/shedding on it, Lewis pulling the arms off or swinging it around, Howie stepping on it during one of his several night-wakings, etc.). So I put Manny up on the dresser, and he stayed there until the weekend was over. That time the assignment was to take a picture of your kid doing something with Manny, so Tim and I hastily took some pictures the morning before Howie brought him back to school. One quick click and there’s Manny and Howie sitting in the chair watching a show. Assignment complete.
This time, I didn’t even read the book to find out about the drawing assignment until Sunday evening, when Tim asked me if we were ever planning on taking Manny out of his bag. Since Monday was a holiday, I figured we still had plenty of time.
Monday came and went. Manny stayed in the backpack.
Monday night I asked Howie if he wanted to draw his picture of Manny, since he had to go back to school Tuesday morning.
“No.”, came the answer. And I didn’t push it.
Tuesday morning I called the school and asked if we could keep Manny one more day.
Tuesday came and went. Manny stayed in the backpack.
But that bear was on my mind all day. I passed by that bag every time I went to the bathroom. Shouldn’t I at least open it up and give him some air? But then something would distract me and I’d move on.
As we celebrated my birthday Tuesday night, I asked Howie if he wanted to take Manny out to celebrate with us.
“No.”, came the answer. And that was that. Once this kid decides he’s not doing something (or eating something, or going somewhere), that’s it. You cannot change his mind.
This morning, it was time to return Manny. And still we had nothing to show for his stay here. I pulled the binder out of his bag (still leaving Manny in there) and dragged Howie over the to table.
“We have to draw a picture of Manny. Let’s draw him with birthday balloons for my birthday.”
(Tim said I should have told Howie to draw a stick figure of himself next to Manny’s bag. In hindsight, not a bad idea.)
“But it’s not your birthday anymore!”, cried Howie, which sent him into a tizzy of complaints about not having had any cupcakes for my “party”. And cries of sadness over not getting any presents for my birthday.
“I’m going to draw squiggle words. It says Happy Birthday Mom thanks for stealing someone else’s birthday.” (please don’t ask me what that means) And he proceeded to take the crayon and just draw wavy lines in the box on the paper. And then he turned to me and smiled.
“Howie, the directions on your homework say DRAW a picture. It says it right here. That is not a picture”. I handed him a fresh piece of paper.
“Stop trying to make me hate you!”
And with that, we were done. I don’t know where he’s heard those words before, but he pulled that script out just at the right time. I closed up the binder that had all the other kids’ pictures of Manny and silently put it back in the backpack. With Manny. Howie ran off to run laps around the house with his brother.
His teacher happened to call at that moment about something else, and I shared the story of Manny with her. She told me not to worry about it, they would ask him at school if he wanted to do it there and if not, it was no big deal.
No big deal. To them. But this was clearly about me.
I felt guilty that Manny had stayed in his backpack all weekend. Our life is so chaotic that adding one more member – even a stuffed furry one – would have thrown me over the edge. I can barely get my kids dressed some days. Dressing a bear was not going to happen.
I felt guilty that we didn’t lead the kind of life that lends itself well to a drawing. Other kids had Manny going to work with their dads, visiting restaurants, and sleeping in their beds. We didn’t set foot outside the house all weekend long. Manny didn’t set foot outside the bag.
I felt guilty that I was longing for the kind of life where my kid could sit down and draw a picture of something wonderful that we all did with his classroom bear. This is a kid who has just started to hold a pencil the right way. I started to panic about homework – even though real homework is still years away. I already battle with my oldest about it. I can’t even imagine how challenging this will be for Howie.
And I felt guilty for making him feel bad about what he did do on that paper. We had nothing to draw for Manny, so making something up made no sense to him. The wavy lines represented words, and that’s what he wanted. What was wrong with that? Nothing, except that I didn’t want the other parents to see his squiggles. Because I didn’t want them to wonder why my kid couldn’t draw a bear.
I can write all I want here about how I’ve come to terms with Howie’s diagnosis, and I’m okay with it all. But sometimes when I see what other kids and families can do, I’m reminded of how different we really are.
Howie clearly knew what he was able to do. For me, the battle over what we can and can’t do as a family will rage on for years to come.
“People I know, places I go, make me feel tongue-tied
I can see how people look down, they’re on the inside
Here’s where the story ends
People I see, weary of me showing my good side
I can see how people look down
I’m on the outside
Here’s where the story ends
Ooh here’s where the story ends” – Here’s Where the Story Ends by The Sundays
January 17, 2011
Imagine my surprise when I got the e-mail yesterday.
My blog has been nominated for an award – the 1st Annual SPD Blogger Awards. From Hartley’s Life With 3 Boys.
It’s no joke to say it’s an honor just to be nominated. It’s very true. I started writing this blog because of Hartley and the other amazing writers in her SPD blogger network. I found her site through a link on another online essay about sensory processing disorder. At the time – a year ago – I didn’t know that anyone else had kids like mine. I felt alone and overwhelmed.
There, on her site, was a long list of blogs. Writing about the exact things we were going through as a family. And suddenly, I wasn’t so alone.
I’m nominated along with some of the most honest, most heartwarming blogs I’ve ever read. To whomever sent in my name, I thank you.
Please come vote for me (twice a day!) from now until midnight on January 22nd. I’m in the inspirational category along with Brotherly Love, Comfort in the Midst of Chaos, and The Gift Blog.
Vote For Me!
Once you vote, check out some of the other blogs listed. They are my favorite writers and they are all awesome, inspirational, funny, resourceful and new.
Thank you for voting and for being such supportive and understanding friends.
January 17, 2011
Posted by Alysia Butler under My Three Sons
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It’s my birthday tomorrow. So I’m asking you to check out my post at Hopeful Parents today, as a present to me.
I’m “tweeting” myself from the future.
(you cannot mock me for this, because it’s my birthday. Almost.)
Please leave me a comment there (or here) about your hopes for the future on this Martin Luther King Jr. Day.
Click here for When I’m Sixty-Four
January 12, 2011
“I’ve finally come to terms with the fact that I’m not the mother I thought I’d be.”
I spent 45 minutes on the phone this morning with a good friend of mine. Like me, she’s a stay-at-home mom with three kids, each with varying degrees of special needs. The conversation started with a discussion about kindergarten next year, and whether or not she was going to have her child in a full day program or a half day program.
“I’m leaning towards full day,” she said, “because I just don’t think I can be home with them anymore. I’m just not cut out to be the mother I thought I wanted to be.”
I thought this was an incredibly brave thing to say. And it sounded very familiar.
I’m definitely not the mother I thought I’d be, either.
When Gerry was born, I had every intention of going back to work. But my job had long, unpredictable hours and the more we researched daycare, the more we realized that my entire salary would be going to pay for his childcare. And when his food intolerance issues cropped up, I knew it was going to be too stressful for me to leave him with anyone else. I had to make sure he was drinking the right formula and eating the right foods, and we were in the doctor’s office for constant weight checks. Financially and logistically, it made sense for me to stay home with him.
(now, I will interject right here that I know how lucky I am that I was able to make that choice to stay home. I know many parents don’t have that luxury, and would rather be home with their children than be at work, but they can’t. I get that and I am grateful to be in the position to make that choice. And my friend feels the same way.)
I told my friend that when I think back on that moment when I decided to stay home, I remember feeling excited and joyful and looked forward to all those milestones we’d reach together. But Gerry was a clingy baby who would only nap on or next to me. I couldn’t do anything for myself during the day. Not even shower. We were together 24 hours a day (he was also sleeping in our bed at night). So, at 15 months old, I put him in daycare two mornings a week.
(I know this was a huge luxury. But I was quickly going crazy, and with no local support system it was the only viable option at the time).
When Howie came along, things got more difficult more quickly. And again, when Howie was two (and I was pregnant with Lewis), I put him in daycare two mornings a week. I told myself that it was necessary with the new baby coming and he needed good peer modeling. Truth is, I needed some quiet alone time.
I told my friend this morning that if Lewis wasn’t the king of naps, there’s a pretty good chance I’d be looking for a daycare arrangement for him now too.
All this goes against everything I thought I’d be as a mother. Of course my kids and I were going to spend every moment together – playgroups, playgrounds, museums and travel adventures. The days would be filled with giggles and delight as we learned about the world together. The TV would never be on. I’d be incredibly patient and never yell. Each one of my kids would have my undivided attention and I could help them with any problem they had. We’d sit and read books and do projects and fall into a big tired heap at the end of the day.
In our own beds.
I didn’t expect to be the mother I am now. The mother who yells and shies away from playgrounds and museums because of the sensory overload. The mother who turns on “Curious George” so I can get some laundry folded and a little bit of quiet time. The mother who has seen machines and wires attached to her kids and spent hours with specialists. The mother who knows the Early Intervention number by heart. The mother writing this blog post in her pajamas at 2pm. The mother who sends her 8 year old to his room to do his homework so he’s not bothered by his siblings. The mother who worries constantly about her kids’ futures, not just 10 years from now, but 10 days from now.
As my friend and I talked, we realized that we’ve changed from the mothers we thought we’d be to the mothers that we have to be.
And for the first time in eight years, I decided I was okay with that.
I know there are mothers and fathers out there who are exactly the type of parents they thought they’d be, and I will admit that I’m slightly envious of that. But my vision of motherhood would not have worked with my family. I can’t be the perfect mom who can spend every moment with my kids.
So who can I be?
I can be the mother who is the first name called out in the middle of the night for comfort. The mother that cheers on one son at the baseball field while chasing the other two off the field. The mother that desperately tries to understand how to play Lego Star Wars on the Wii. The mother that would do anything for my boys. The mother, who every once in a while, needs to be by herself.
By being who I have to be, I’m the mother that my kids need and want me to be.
I wouldn’t want to be anything else but that.
“Well, who are you? (Who are you? Who, who, who, who?)
I really wanna know (Who are you? Who, who, who, who?)
Tell me, who are you? (Who are you? Who, who, who, who?)
‘Cause I really wanna know“- Who Are You by The Who
January 9, 2011
The events in Tuscon, Arizona yesterday (January 8th) prompted me to write this B Side memory of my own life in the political world. I don’t write or talk a lot about the days I spent in the Vermont State Legislature, but yesterday’s shooting brought back a flood of memories from my last year there.
In January 2000, we were getting ready to return to our legislative session after the break. In Vermont, the legislature is in session from January until late May or early June, and then off again until the following January. The reason for this is to create a “citizen legislature”, so that the people in charge of making the laws aren’t too far removed from the people affected by those laws. It was my first (and only) term in the state legislature, having been appointed in 1999 to fill my father’s seat after he died.
Shortly before the session began, the Vermont Supreme Court handed down their landmark ruling of Baker v. Vermont, stating that homosexual couples had the constitutional right to enter into an agreement like marriage – the first such ruling in the country. They gave the legislature the directive to create laws to rectify this. With one quick statement, the entire 2000 legislative session was turned on its side, and basically focused only on this one issue.
I’m sure I don’t have to tell you how emotionally charged this issue was (and of course, still is). What I will tell you is how quickly the atmosphere in the State House changed. Our little state suddenly had the attention of people from all over the country and the world. Every public hearing held on the subject had hundreds of attendees. Reporters from across the world came to report on the proceedings. Money poured in from all sides in an attempt to influence us. Every meeting, every discussion was front page news.
All of us were on edge. The mood in the State House went from easygoing and laid back to very tense. Every morning, my mailbox was full of hate mail, condemning me and telling me I was going to hell for my beliefs. I got followed in the hallways by lobbyists. My name and telephone number was published in the state’s largest newspaper and broadcast on local radio, with the “encouragement” to call me everyday to say that God hated me. For the first time in recent history, the security staff was armed. And as the legislature’s youngest female representative, the police staff checked in on me when I arrived in the morning and when I left for the night.
But for the most part, the members of the legislature remained cordial and collegial. When public hearings turned heated, the representatives would stand up for each other and demand respect. Even though the very core of our government was being challenged, we stuck to proper procedure and the Vermont way.
What I saw that year was extreme political courage on both sides. I saw farmers, teachers, doctors, and lawyers come together. And when the final bill came to the floor to create the new civil unions, the debate itself remained civil and respectful. Members stood up and voices trembling, explained why they could not vote for the bill because it went against their beliefs. Other members, like my seatmate, stood up and talked about her lesbian daughter for the first time ever. She knew that by voting for the bill, she would lose her re-election in the fall. But in her heart, she couldn’t vote any other way but in favor of the bill. When she sat down after her speech, she started to cry. Members from all over the room (and from both sides of the debate) broke protocol and came to her side. It was an amazing display of solidarity and support – showing the world that we wouldn’t stand for the outside tyranny that had invaded our beautiful building.
The bill passed and became the model for other laws across the country and the world. Many members of the legislature lost their re-election bids, including my seatmate. I chose not to run for election that year, deciding instead to move to start my life with Tim and begin our family.
Yesterday, watching the news, the memories of those months came back like a ton of bricks. I don’t care what side of the political debate you fall. None of that mattered to that little nine year old girl Christina Taylor Green. According to news reports, she was at that grocery store to meet Rep. Giffords because she had just become interested in politics. The innocence of this is painful and striking. This young girl, just slightly older than my oldest child, could have found a cure for cancer. Or been President. Or a teacher. Or a mother.
The political left and right will argue for days and months over who is responsible for this tragedy. But it doesn’t matter. What matters is that it’s time to change how we treat one another. It’s time to show the same respect and civility that my colleagues did for each other 11 years ago. Because what is the purpose of all the anger if the people we say we’re fighting for aren’t alive to hear it?
“You may say that I’m a dreamer
But I’m not the only one
I hope someday you’ll join us
And the world will be as one” – Imagine by John Lennon
January 7, 2011
In my family, we call it the “weepy gene”.
It could also be called the “cry in public” gene. Or the “whenever I talk about my family or something emotional, I get teary” gene. Or the “please don’t ask me to give a toast because I might not get through it” gene. Several members of my extended family have this gene.
Not me. I’m not a public crier.
Not that there’s anything wrong with crying, but doing it around other people is just not something I’m comfortable with. As far as I can remember, there have been only two times in my adult life that I have become so teary that I couldn’t speak – once at my sister’s Bat Mitzvah, and secondly at the night before my brother’s wedding. I didn’t even cry at my father’s funeral (probably because I let my brother do all the talking that day).
Not that I don’t cry. I just end up saving it for the ride home alone. Or in the bathroom. Or in front of Tim (lucky guy).
So I certainly wasn’t going to cry during an IEP meeting. Nope, not me.
I pulled out all my tricks during the meeting to keep my emotions in check. I fiddled with my pen. I pulled on my sleeves. I broke eye contact when necessary. I counted the days in my head until Spring Training starts.
There were two moments when I thought I was in trouble. The first came after his school OT was finished talking. She told us that he had met all his fine motor goals. ALL. HIS. GOALS. This was a kid who until last month couldn’t color, let alone write his name and all the letters. He couldn’t hold the pencil right. Now he’s zippering, buttoning, and drawing recognizable shapes and figures. As she got up to leave, I thanked her for all her hard work this year, and told her how grateful I was for all she did.
“Oh no”, she said. “This was ALL Howie. He wanted to do this. He wanted to learn. He did this all on his own.”
With the tears welling up, I started counting the holes in the ceiling.
A few moments later, tears nicely pushed back inside, the team leader asked Howie’s one-on-one aides to talk a little about his progress in the classroom, and what they saw as his strengths and weaknesses. We shared stories, went back and forth about some ideas, and as they stood up to leave, one of them said to us:
“We just love him.”
And the tears were back. I whispered a “thank you” as I calculated that there were 51 days until the Red Sox started their season again.
I made it through the rest of the meeting on edge but tear-free. We ran through his goals for the rest of preschool and the start of kindergarten, talked about his summer program arrangements, and worked through some of the sensory accommodations that might be necessary for kindergarten to be successful. Right now, at preschool, Howie accesses the OT room almost as soon as he gets into school so that he’s able to function appropriately in the classroom. This means that he misses some valuable social time with his peers during their center time, as he returns just as morning meeting begins. The elementary school OT suggested that he might want to come to kindergarten 15 minutes early, so that if he needs the OT room, he goes before the other kids get there and doesn’t feel like he’s not part of the school routine. Tim thought that maybe there was a way for him to get that sensory input at home before school started, and we agreed to start using some of our home services to work out a better before-school routine. All of us around the table agreed that the more Howie felt like a full member of the inclusion class, the better it would be for him in the long run.
They all thought that with the right accommodations in place, Howie will be ready for kindergarten next year.
I left the meeting very proud of myself, having kept those tears at bay.
Until we reached the car.
I climbed into the driver’s seat and turned to say goodbye to Tim.
“You know,” Tim said, “if we have to get a dumpster to clear out the basement and put a equipment down there for him, we’ll do that.”
Cue tears. Cue sobs, actually. Giant ugly body heaving sobs.
My poor husband, who has seen this so many times before, knew exactly what to say.
“Are you crying because I said I’d finally clean out the basement?”
The joke to make me laugh when all I want to do is cry. We both knew the cries were a mixture of relief and exhaustion. Tears of pride because our son had been doing so well, but also tears because of the road still ahead of us. Tears because we know we had done so much work to get him to be ready for kindergarten next year, but also knowing that there’s so much more we could and should be doing to help him.
I pulled myself together on the ride home, and was able to talk coherently with my friend about the meeting when I got back. The tears once again were pushed way down under the surface. Because that’s how I bury the weepy gene.
It’s clear now that my son is ready for kindergarten, and kindergarten will be ready for him. The question remains, am I the one who isn’t ready? And where will I go to hide the tears on that first day?
“And too much time I’ve been spending
With my heart in my hands
Waiting for time to come and mend it
I can’t cry anymore” – Can’t Cry Anymore by Sheryl Crow
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