Melissa Anne Cohen

Okay, I admit it. I’m straight up terrified of Monday.

Monday, Sam starts back to school. For the first time in four years, only now he’s going back to a new school, with people I don’t know and trust even less. With a zillion other kids – and with the added problem of being LEGALLY BLIND.

We’ve done everything possible to get him to this point. From last summer when he first said that he’d like to try going back to public school up until now, everything we’ve done has been working towards this goal. Fighting for the right location, arguing over what services he’s going to get, getting documentation and letters and God, so much more. Everything comes down to this.

And it’s the ideal set up for a first day. The school has set up an orientation for Monday and Tuesday of next week, and school formally starts the following week. So the two hardest things about going back to school will be split up. He doesn’t even have an official “first day” because he’ll have two half first days. This is the pep talk I’ve been giving him off and on over the past few weeks.

I’m trying so hard to stay positive and relentlessly optimistic. He’ll be fine. Of course he will. He’s been through way worse than this – and I’ll be right there, available via phone, the whole time. It’ll be a walk in the park. Easy breezy lemon squeezy.

But the hard reality that I won’t show him is that I’m unbelievably terrified of what Monday brings. What if he can’t do it? What if it’s too hard? It’s such a HUGE change, he’ll be out of sync with everyone else. He’s had four years at home with me and his sisters, how is he going to fit in with the average 12/13 year old boy? His education is all over the place – he can’t spell, at all. His reading isn’t a hell of a lot better, but it ‘s because he can’t see all of the letters all of the time. But he’s so damn smart – he does all this math in his head, and his vocabulary is way above that of an average seventh grader.

He’s super nervous, and we’re bouncing off of each other in a way that’s not at all helpful. I don’t think he knows how panicked I am, but every time he talks about how nervous he is (and my God, the fact that he can articulate it is amazing and fantastic), my heart squeezes a little tighter. He knows it’s irrational, he knows it’s not based in anything real, that he’ll be able to handle whatever comes his way – but he’s still super stressed and tense.

In order to pull this off, I have to be able to shove all my own fears and panic (and to give an example, I literally started crying earlier when the head of the Special Ed department emailed me back about an aide that he’s going to have) and pretend that I’m completely and totally confident that he’ll be fine. And I am.

Because while the truth is, Sam is going to be fine, and he’s going manage whatever Monday throws at him with grace and humor, the reality is that going back to school is still a huge deal. He couldn’t do it before, it was so awful, we had to pull him out of school entirely, but not before fighting like hell for two months to get him back into the classroom. It was awful and traumatic, and followed by a horrific accident that changed everything.

Sending him to school on Monday isn’t the hardest thing we’ve done. Not by a long shot. But it feels that way this weekend.

So much happening these days….

Jessie has been tentatively diagnosed with something called POTS (Postural Orthostatic Tachycardia Syndrome ). She’s started getting headaches every day, some really bad, some not so bad, but accompanied with dizziness and lightheadedness. She’s only passed out once, but once is enough, really. At least, as far as I’m concerned. She’s managing it well, because it’s summer, and if her head hurts, she can just go into a dark room and shut the door, but that’s not a good long term solution once school starts. So we’re heading into to see a cardiologist and there the possibility of an MRI. I’m not panicking about it – but low grade concerned.

She’s working along with her permit – she’s still got to cram in more actual driving lessons with the driving school, but she’s been driving more and more when I’m out and about. She’s still doing her internship, but most of that is done at home with her only going into the office a few times a week. She has Model UN camp next week in Boston – so that’ll be a whole lot of me hauling ass in and out of Cambridge every day.

We had Sam’s glasses evaluation today – and it went SO much better than I anticipated it would. He actually is getting bifocals. He had worn glasses before the accident, but it never seemed as though glasses would help after the damage to the optic nerve. We tested him each time, and he was adamant each time that he saw no difference. For some reason, this time, he did. I don’t know if it was just maturity, or if his vision is improving, or what it was, but I was so thrilled.

The glasses won’t fix everything. They don’t fix the damage done to his optic nerve, and they won’t fix the pockets of blindness in his left eye. His right eye is still functionally useless on it’s own, but when he uses both eyes, his vision can get down to 20/50 in optimum conditions. That’s stunningly good – good enough to potentially get his license one day. It’s not good enough to make reading easy or effortless, he still struggles with being able to read a continuous line of text. I still worry about how he’ll function in a classroom, and what September will bring. But glasses will be a huge improvement for my boy.

My baby Julie is in the throes of adolescence. She’s emotional and sassy and weepy and silly and angry and delighted, often one after another in rapid succession. She’s SO tall – easily fitting into all of her older sister’s clothes (much to Jessie’s frustration), but still seems so young at times. She still needs me to tuck her in every night (last night, she stayed up until after 10 when I got back from the vet ER with Lizzie), and she still wants me to do her hair. Thank God. I’m in no rush for this one to grow up, she could stay my baby for a lot longer and I’d be happy.

Fourth grade is coming, though, and I know that we’re on the precipice of a whole new stage in her life. Decisions will have to be made about what school she’ll be attending for middle school, she’ll have to get a phone and please God she’ll pause in growing so fast. I’m literally at the point where school starts in five weeks, and I refuse to buy her school clothes until the week before, because I know she’ll outgrow it by the time September rolls around.

I still feel like it hasn’t really started yet. We had Glennys down for the first week, and then… I’m drawing a total blank on what we did the following week. Marc is off all this week, and it still feels like we’re existing in this odd holding pattern. Waiting.

I know that the end of the summer is going to be bringing big changes to our lives. Julie will be in fourth grade, which seems somehow more momentous than it maybe is. It’s fourth grade, a grade her brother never managed to make, and a year that her older sister absolutely hated. Fourth grade was Jessie’s year of many injuries – she had her concussion fourth grade, and broke a couple of bones, sprained a few more muscles. Julie is such a different kid, socially, than Jessie is, I’m hoping that her fourth grade year is a lot happier and a lot less accident prone than Jessie’s was.

Sam will be going into junior high, which, in and of itself, would be huge. But given that it’s his first year back since third grade… it scares the bejeezus out of me. There are so many things that I’m low-level panicking about – tonight I’m worrying about fire drills and shooting lock downs. And lockers and taking notes and navigating socially… it’s like this endless loop that I try desperately to not fall into. He’ll be fine, he’ll be fine, he’ll be fine. And if he isn’t… then we homeschool again. Or we’ll do TECCA or one of the other on-line options. There are choices here, and he isn’t locked into anything.

And Jessie – oh my God, she’s going to be a junior. In high school. I’ve got two more years of her childhood left, and then… it’s not that parenting is over for her, she’ll still be my daughter, and God knows, I’m 45 and still calling my mother daily – but I still get a lump in my throat when I think about her moving out.

I wonder if I’ll ever reach that point again. When I have three kids, all in school, all proceeding normally. Because today, for the first time in forever, I picked all three kids up from school and stopped for cocoa and the entire drive home, with everyone giggling and arguing and discussing summer plans… it was perfect.

Sam is enrolled for middle school next year. It’s terrifying and glorious and terribly mundane all at the same time. We’re figuring out summer assignments and waiting for his schedule, and deciding if he needs a new backpack for next year (he does – the dog ate his straps on his relatively new one earlier this week). It all feels so… normal, until I realize that I haven’t done this, with him, in four years.

Jessica will be a high school junior. She’s now closer to the end of high school than the beginning. I’m cherishing this time with her, everything feels like it’s too close to the last time. When I’m not biting my tongue and trying not to snap back at her – because sixteen years old is not always fun. But mostly, it is. She’s driven and smart, and controlled enough to know when she needs to step away. Not controlled enough to stop insisting on getting the last word in every fight, but I keep hoping it’ll come.

Julianna blossomed so much this year! I was afraid, when she didn’t have any of her close friends in her class, that this year would be terrible. And instead, she made new friends. She started giggling in class, competing with friends to get better grades, and fooling around in music class. She’s taller than every other kid, and growing up so fast I can’t catch my breath.

I have three kids starting school this fall. Still filled with all kinds of worry and stress, but also – so grateful to have this. So grateful to worry about summer reading and spelling and schedules and backpacks. He’s healthy – and while I do need to be more involved in his education still, he’s back to being just one of the kids. And I’ll never take that for granted again.

I know I shouldn’t feel this way. I know I should be grateful I still have a Sammy. I should be focusing on the fact that he’s survived the past three years, gone through the trauma and the loss and emerged stronger and more emotionally able to handle whatever life throws his way. I know that if he’d hit the car four inches higher, or four inches lower, we wouldn’t be anywhere near as lucky. He’s a little bit blind. But he’s healthy and whole and I should be focusing on that.

And I do, for the most part. But today, shopping for a water bottle for him, it occurred to me that we had lost those years. Lost the normalcy of age nine, ten, eleven and twelve. He’ll be thirteen in two months, and I’m unsure what 13 year old boys like. Is a minecraft water bottle too babyish? (It’s not, for the record. He was delighted with it) But it occurs to me that I don’t know those things, because Sam missed those years. He didn’t get to have those normal, growing up years.

I mean, he HAD those years. But they were learning all these existential HARD things. Like what it’s like to deal with incredible pain. What it’s like to lose your vision, slowly and painfully, and how to navigate in a world that’s so much harder now that you can’t see what’s coming your way. He had to learn the capriciousness of life, that sometimes horrible things happen, even when your mother is standing right there, and there’s no real safety or security ever.

I wanted him to learn about Batman, and stupid shark t-shirts, and Mario Brothers and whatever else 9, 10, 11 and 12 year old boys were learning. I wanted that experience of mothering a kid who was growing and learning and doing things that all other kids his age were doing.

It never occurred me before, not until we were here, putting him back into the real world. He spent the past three years at home, with me, healing, and learning and talking and laughing, but not experiencing all those things that I wanted for him. Now we’re playing catch up, not just on fractions, but on regular life.

I know I should be grateful. And I am. God, I am. I love this kid so much, and I’m so proud of him. But I wish his life was easier, I wish we hadn’t missed out on those years. Those years have made him who he is, as strong and stubborn and funny and sarcastic and sweet and loving – and I wish I could be grateful for those lessons. But as much as I love who he is, I wish he didn’t have to go through missing those years to get it.

I wrote this originally when Sam was in first grade, or second. Before third grade, when everything went downhill, and school became terrifying and impossible for my poor boy. Sam has started back at school, on a very limited schedule, and again, I have to thank the teachers, staff and administration who make it possible. When you have a child with an anxiety disorder, you can’t do it alone. Especially if your child’s only idea of safety is you – you need other people to support him, encourage him, and teach him that he’s okay without you there. I’m incredibly grateful to the staff at Gates Lane Elementary School, the Special Education department at Worcester Public Schools and grateful in advance to the teachers and staff at Forest Grove – because they make it possible for my son to do what he wants to do.

This post could also be titled – “How I Learned That Sometimes, It Really Does Take a Village.”

I was scared to send my second child off to school.  I was nervous about sending off my oldest, but it was nervous tinged with excitement.  School was fun, school was where she’d make friends and play games.  Where she’d learn fascinating new things and develop new skills.  School was field trips and lunch boxes and spelling words and running around at recess.   And for her, that’s exactly what school is, and has been from the very beginning.

For my son, my second child, school was terrifying.  He had extreme separation anxiety, and I was absolutely baffled by it.  My older child was a little shy, a little cautious, but it was nothing compared to my son.  He took shy to whole new heights.  When we were at home, or in a familiar place, he played with kids his own age, was happy and relaxed.  But if we’d go to a party, or to a new environment, he would shut down, beg to be taken home or hide his face in my arms.  If we were there long enough, he’d relax and start to have fun.  But sometimes it could take hours for him to feel comfortable enough to smile.

We had tried preschool, and it was awful.  He cried all the time, more at drop off, all the way thru the day, and was miserable at home.  He started pretending to be sick, every day, to get out of going.  I talked to the pediatrician, and decided to pull him out.  His baby sister had been born earlier that year, and my husband had just gotten laid off.  I rationalized that the time at home, with his new sister and his dad, would be better for him.  He’d have a chance to grow up a little, it would make kindergarten easier because he’d be older, better prepared.  I was hoping that the old attachment parenting adage would work – meet the need and then the child would outgrow it naturally.

I was wrong.

Mrs. Gravel, at Flagg Street School, was my hero.  She took my little boy, and made school okay for him.  She called me in the middle of the day sometimes when he’d had a rough morning, to assure me that he was doing great.  She made her classroom a place of security, and taught him that the world was safe.  I couldn’t teach him that he’d be okay without me – I needed a teacher for that.  I needed a teacher to show him that he was safe, and that he was valued and loved, and that he’d be okay. Because of her, Sam excels in school today.  Because of her, he’s tearing around the first grade playground, completely confident and secure.  Because of her – Sam is who he is today.

It’s not enough to say that she went far above and beyond the call of duty with my son.  It’s not enough to say that she put up with screaming temper tantrums, and on more than one occasion, had to chase him down when he’d escape out the back door and try to run home.  She did all of those things, but more than that, she made me feel like I could trust her to take care of my son, to teach him not about how to read or how to add and subtract (although she did those things as well), but she saw that what he needed was not just academic instruction, but also support to get to the point where he could learn.

The decision to hold him back in kindergarten was incredibly hard for me.  I’m a writer, a reader, I like and value academics and intellectual pursuits.  It never occurred to me that my child might not be ready to move to the next grade.  When we had that conversation, the first time and every time after that, Mrs. Gravel somehow managed to allay all of my fears.  She pointed out that an extra year, in her classroom, would give him the tools he’d need going forward.  It would change him from being the youngest little boy to the one of the older kids, and give him the opportunity to be a leader in the classroom.  She made me realize that it wasn’t about not being academically ready, it was more about recognizing that different kids had different needs.  It wasn’t a sign that he couldn’t do the work, it was a sign that he had spent the first six months of kindergarten struggling with overwhelming anxiety and not learning.  And she was right.

Because of that decision, because of the two years that my son had in her classroom, he happily bounces out the door for school every morning.  Because of her, he’s above grade level in math, and exactly where he should be in reading.  Because of her hard work and dedication, the only problem  he’s had in first grade was a tendency to get too rambunctious at recess and to get too silly during classroom discussions.  He’s a happy, content, and secure first grader, looking forward to second grade and excited about a new classroom.  His transition to first grade was seamless, because Mrs. Gravel designed a program to introduce him to a new classroom, and to establish a relationship with his new teacher well in advance of the first day.   The only tears on that day were mine, in the car, on the way home after drop off.  Because he had come so very far, from that little boy who screamed and cried on the first day of kindergarten.  Because he had grown so much, and was so much happier and secure and confident.

Susan Gravel did that for him.   She showed my little boy that the world is a safe place, that there are people who aren’t related to you who will route for you, support you, teach you and help you to be best person you can.  She taught me that even the best parent will need help, that sometimes the best thing you can do for your child is to let someone else be the one to hold him, to let him go.

I’m very fortunate that my children have all had exceptional teachers, who take the time to get to know them, to get to know us as a family and who teach them so much more than how to add and subtract.  And while all of the teachers that all of my kids have had thus far have been wonderful, Susan Gravel will always be my favorite.

Sam just wrapped up his first week back at school (with a day off, as his teacher is out sick today). But for four days this week, he got up, got dressed and went in for ELA, math and braille.

It’s a small group classroom (or resource room, or special ed room, not sure what they’re calling it now). He’s in with a group of three or four kids, and working on grade level stuff (I think, although it seems really below what he’s capable of at this point). He was hugely anxious about it – shaking so hard the whole car was vibrating on Monday, and he was throwing up on Wednesday morning. But each morning, he got up and went, and every day when I’d pick him up, he’s relaxed and happy.

I didn’t plan on ever sending Sam back to public school. And truth be told, I don’t know that we’d be here if it weren’t for the vision loss. Maybe we would. Maybe Sam’s always wanted to go back to school when he was ready, and on his terms. But the vision loss certainly made the decision a lot easier. He’ll need to be trained in equipment and braille, things that I don’t know enough about.

Homeschooling was perfect for us, for a long time. And looking back, I wish that we had pulled him earlier. Sending him back for full days (because that’s our plan for September) scares the hell out of me. But the point is that it doesn’t scare him. He’s ready for this.

There is so much to say about this that I’m stumbling with how to express it. What I do know is that I’m ridiculously proud of this kid. I don’t know what the future holds for him, and education choices can change. If public school doesn’t work, we’ll go back to homeschooling. It went so badly last time, and I’ll always regret that the last few months before he lost his vision were spent with us trying desperately to cram him into a public school environment that was failing him so much.

It’s been three years, three years of growth, and maturity and learning and healing. He’s ready for this – and I’m never going to forget how much he’s had to overcome to get here.

Marc told me once that he thought losing a child is the worst thing. Losing a child slowly is the second, and watching your child suffer in pain is the third worst thing that any parent can go through. Sam wasn’t ever near death, but the pain and the trauma is something that I don’t think any of us will ever fully get over.

My life is separated into two parts, before the accident and after. I trace back to this time three years ago, before the pseudo tumor diagnosis, when he was in so much pain and nobody knew why. I remember the sheet of paper on the refrigerator that I used to track which medication I gave him and when. I remember the white rice he ate, endlessly, because everything else tasted terrible. I remember how he cried, how he screamed in pain and would pass out in the middle of it and wake up screaming again in an hour. I remember standing in his hospital room, as the medical rounds were happening, and every specialist who came in had a different prognosis and treatment plan. I remember falling apart on the cleaning lady who came in to replace the toilet paper, because I couldn’t hold it in any longer. Nobody knew what was wrong with my baby, nobody knew how to fix it, and I couldn’t see any way out.

It was simply horrific, and as much as I want to, I’ll never be able to forget.

Things are on the cusp of changing suddenly. Or not suddenly. We’ve been moving to this point since the accident. He’s been healing, and growing and getting ready for this for years, and I find myself, today, on the edge of Sam starting back at school (albeit on a very reduced schedule) thinking back on where we were and what we’ve done. The decisions we made when nothing felt like a choice, and what the ramifications of those decisions were on all of our lives.

Could we have accepted the blindness earlier? Done more, sooner? Did I shelter him too long, let him stay home and safe and accommodate the disability instead of teaching him how to deal with it? Was it a choice? Or was it always going to have to come from Sam, was it always going to be when he was ready to make these changes and not a moment before?

Sending Sam back to public school, even on a very limited basis terrifies me. I’m afraid it won’t go well, that he’ll hate it, that he’ll convince himself that he CAN’T do it. I’m afraid of sliding back into that place, that dark, dark place, where he was afraid to leave the house, afraid to go to a store or out to a party. I’m afraid if school goes badly, it’ll teach him that he can’t do any of those things.

I hide all of it. I fight for him to go to school. I fight with everyone. I cry at so many meetings and gatherings, I’m pretty sure the school system gave in and did what I wanted just to make sure that Weepy McGee would stop showing up everywhere and sobbing all over them. I’m the public school cheerleader, promising incentives for going when he’s reluctant, doling out video games and trips to the Dollar Tree with reckless abandon. I say all the right things because he needs me to believe that he can do this. And so I believe. Even when it terrifies me.

Because, in the end, this isn’t about me at all. And whatever happens, if he thrives in public school, or hates it and comes back home, it’ll still be the right choice for him. Sam has survived unimaginable pain, and the slow loss of vision. He’s learned that terrible, awful things happen when your mom is right next to you, with no warning and it’s nobody’s fault. He’s learned things that I never wanted my baby to know, how to manage pain, how to distract yourself from loss, and how to claw your way back to normalcy. Wherever this journey takes him, I know he’ll get there in his own time.

Quick disclaimer – I don’t recommend this path. It’s counter to everything I think the IEP process should be, and it’s exhausting on every level. But it does work – because while I’m not done, I’m slowly getting everything we wanted for Sam for next year.

Okay – here it is. I just cry.

The problem with the public school system is that it’s designed to educate mass numbers of children. They’ve got thousands of kids to process, and do their best to provide the best for the most. And with most of kids – it’s fine. I’ve got two girls in public school, and they’re both thriving.

But with Sam – he NEEDS the Individual Education Plan. He can’t get crammed into whatever works for most kids. I wish he could, God, I wish he could. But the reality is that with the anxiety and the vision loss, this kid NEEDS his own individual plan. But trying to get it is so incredibly hard. It’s just not what they do – and because Sam’s so specific in his needs, I need to involve the homeschooling department, the Special Ed department, mental health, TVI’s and we also needed approval to send him to a school outside of our district.

The struggle is getting people to see Sammy. Really see the kid, and what he needs, so that they understand why I’m asking for what I’m asking for. And the only way I’ve found to do is to just sob.

I elevate without hesitation, going to the school committee, Directors, department heads, principals. Anyone I can. And I explain, exhaustively, over and over again. And without fail, I just break down and cry. But what that does is force the system to acknowledge his humanity. I need them to see who Sammy is and the best way to do that is through my eyes.

We’re not done yet. There’s still a lot left to accomplish, but we were able to confirm that he’ll be able to attend the school I wanted him to, despite it being out of district, and we’ve already got approval for partial enrollment. The school department is looking at it as we’re still homeschooling, and that’s fine, but he’ll be taking English, Math and braille at school, and I’m shooting to add in homeroom, lunch and art, and then gradually increase him up to full enrollment. It might take me a year to get him to full time enrollment, and we might decide to pull back and do more of the education at home.

Purim has never been one of my favorite holidays.  I was first introduced to it as a new mom, with a tiny baby girl who was terrified of the rabbi dressed up like a gorilla.  My subsequent kids were panicked by the megillah reading, with the shouts and noisemakers and then the inevitable arguing over who got which treat in the mishloach manot baskets – it’s always been the Jewish holiday I struggle to connect with. 

But my kids have gotten older, and a lot of the hard parts of Purim have been outgrown. One of the more challenging parts for me has always been in figuring out what to wear, and the kids are old enough now to pick their own costumes.  Then my son announced that he had decided to go as a blind kid instead of a policeman.

The irony is that he is visually impaired.  Sam was in a bad accident a few years ago, and lost vision as a result of his injury.  The vision loss was slow and gradual, and thus, accepting his disability has also been slow.  I don’t think either of us was ready to admit that his vision was really that compromised.  He’s right on the edge of legal blindness, with enough functional vision to make it not a foregone conclusion that he needed braille.  Because we started home schooling right after the accident, I was able to tailor his education to meet his abilities, and the fact that he couldn’t see to read was easy enough to gloss over.  But as he’s gotten older, he’s gotten more independent, and this year, we’re starting the process of reintegrating him into public school.

Putting aside entirely the challenges around designing an IEP, the biggest hurdle has to be acknowledging his disability.  For a long time, I think we tried to pretend that it wasn’t there, or at least, that it wasn’t as bad as it could have been.  A minor hurdle, a challenge, but hey, every kid has challenges, right? 

When we looked at putting Sam into a regular classroom, the reality that he is blind came crashing down on us.  In addition to all of the technology that he’ll need to access the curriculum, we also ordered him a cane to give a visual cue to those around him that he couldn’t see as well as you might expect.  Because blindness really is an invisible (oh the irony) disability, one of the challenges is expectations of those around us.  

Sam has been very slowly starting to use the cane out in public.  He doesn’t technically NEED it, because he’s been existing like this for the past three years, but it does help, especially in a setting where the lighting is low.  A Purim costume and dance party is a good example of where a cane would come in handy.  And when he first said he wanted to go as a blind kid, I was initially taken aback.  My knee jerk reaction is that he’s not a “blind kid.”  And while yes, he’s visually impaired, he wanted to go, bring his cane, get some dark sunglasses and just go as that – a blind kid.

Once I wrapped my head around it, I said it was a great idea.  Because it is. Sam is a “blind kid.”  It’s his disability, his life, and this was a way to experiment with going out in public embracing that identity.  I’m not going to pretend that it wasn’t hard.  On some level, I don’t think I’ll ever stop grieving the loss of his sight, the loss of the ability to walk around without a cane.  And when I saw him walking over to the refreshment table on his own, using the cane to knock the balloons that were on the floor out of his way, I asked my older daughter to keep an eye on him and went into the bathroom and cried. 

Because the grief is real, and watching him grow and own his disability is incredibly complicated.  I’m proud and devastated all at the same time.  He’ll be thirteen this year, and his bat mitzvah is rapidly approaching.  I’ve always loved the idea of acknowledging this time in a young adults life, recognizing the increasing responsibilities, not just on a religious but also on a community level.  As a parent, it’s important for me to acknowledge that it’s no longer up to me to manage Sam’s vision loss.  Dealing with his disability is something Sam will have to do for the rest of his life, and he’s doing a much better job of it than I am.  For Sam, he’s coming of age not just chronologically, but also coming to accept his vision loss, to make the accommodations he needs, to ask for the help, and to know that he’ll find his way, even if he can’t see as well.