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Nov 29

Confusion

And frustration.

That’s where I am right now.  I’m trying to wade thru the paperwork and process of getting Sam the services he needs while still homeschooling – and it’s a hot mess.  Nobody knows who I need to talk to, nobody wants to say that they’ll step up and help me figure it out.  I’ve got a list of people to talk to, all of whom have told me to talk to someone else. Yesterday alone, I spoke with six different people from the school system, all of them agreed that I needed help, and sincerely believed that I should be talking to someone else.  That someone else would agree that wow, I did need some assistance, but here’s another contact I should reach out to – said contact then agreed that the best person to talk to would be the one I started off with.

I’m baffled, and gearing up to just start calling and writing and bugging people in order to get him what he needs.  The problem is that I don’t entirely know WHAT I need… which makes it tougher.  And by tougher, I mean – baffling, frustrating and in the meantime, I’ve got a kid who’s education is reduced to the audiobooks shelves at the library and me reading thru Life of Fred with him.

In other news… girls are good.  Julie just got her report card, and she’s kicking ass in all subjects, and a joy overall.  Same thing with Jessie – all A’s, except for math – and even that is light years better than it was last year.  They’re both thriving in school, and while I still have it in the back of my head to homeschool them, especially Julie, neither of them have ever indicated that they’d like that.  My plan, right now, is to have Jessie continue up into high school and go the traditional route, and with Julie – I’m praying that she gets into Goddard in the sixth grade.  If she runs into problems… I love her teacher.  I’m confident that for right now, public school is working for Julie and she’s happy there.  If that changes – I’m also confident that homeschooling would be wonderful for her.

Nov 22

Sunrise

I woke up this morning a little before five.  In my dream, Jessie slammed a car into another one, and totalled both of them.  Nobody was hurt, in my dream, but she had done it accidentally because she was mad, and I was busy taking care of Julie and couldn’t stop her.  Then Marc was snoring, and in my dream, it sounded like she was actually awake and screaming and crying, so I woke up, ready to spring into action.

Turns out it was just a dream, she was sound asleep, but I was already up.

The sunrise is beautiful, and my toes are frozen.  I took a shower and even used the blow dryer on my hair, but neglected to get socks.  I have dishes to do, and laundry to fold and a poem for eighth grade English that I have to print for my girl.  Today’s a blur of school conferences, doctor’s appointments for Sam and Julie, and kid picks up all over town.

Sam ate cereal last night.  For the first time.

Jessie’s class voted for superlatives yesterday for the year book.  She won six of them.  She’ll only get credit for one in the year book (because each kid can only get one), and she got the biggest majority for Best Dressed, so that’s what it’ll be.  But she actually won Most Presidential, Best Hair (and for those who remember the Great Hair Crisis of 2015 – you’ll understand my shock and joy at this one), Most Likely to End Up on the News, Most Likely to Rule the World and (wait for it…) Best Sneeze.

Julianna Ruth is very busy taking care of Anna these days, she’s got an American Girl doll and she’s the beloved one.  I’m looking at the dining room and trying to decide if I should clean the room, or just leave the bedroom that she’s built out of dollhouses and Jordyn’s old suitcase.  She spends fifteen or twenty minutes singing Anna to sleep every night, and gets up in the middle of our snuggling to go check on her because Anna has trouble sleeping.

 

 

Nov 22

Thanksgiving

We’re prepping a little differently this year.  In the past, we’ve split up on Thanksgiving.   Marc stays home with Sam and sometimes Julie, and Jessie and I spend Wednesday night and most of Thursday at my mother’s house.  And in years past, that’s been okay.  Sometimes Marc, Sam and Julie would come down to my mothers and join us for dinner, some years they’ve stayed home and made a big Thanksgiving dinner here – which is how we started doing second dinner.

The High Holidays this year were brutal, at least Rosh Hashana was.  I missed my son.  Separating out on Thanksgiving used to be no big deal.  It was even a lovely tradition, because I love having Jessie and my mother together, prepping Thanksgiving every year.   It was easy to take it for granted, we were always together, so if we, as a family, separated out on one holiday, it was no big deal.  And until I went through the holidays in September with him at home, and us out celebrating as a family without him… it wasn’t a big deal.  Now it is.  I want him with me on the holidays.  I don’t like not having all of my kids with me when I do family things.

This year, I’m working on Wednesday morning.  I’m going to come home and pick up at least the girls, maybe Sam, if I can talk him into it.  We’ll go down to my  mother’s house, and bake, bake, bake.  Marc will come home, pick up Julie (maybe Sam if I can get him there) and bring them home.  Jessie and I will sleep over and get up at four o’clock to prepare the turkey and make the stuffing, eat Danish and gossip with my mother and aunts and cousins.  At noontime, we’ll pack up and head home, where Marc will have prepared a lovely Thanksgiving dinner for us, and Annie, Richard and Glennys, and Joy, Skip, Julia and Harrison.

In other news… Jessie won Best Delegate yesterday at her Model UN conference.

 

 

Nov 07

I’ve never had a case like this

That’s the theme for Sam, apparently.  And honestly, hearing that about your child is not really something that bodes well for me.

Nine year old boys don’t get pseudo-tumors from a bike accident.  Psuedo tumors don’t NOT get better when on Diamox.  Diamox doesn’t impact taste buds to the point where they just don’t work any more.  And now – kids who are visually impaired don’t get homeschooled.

I talked to the case worker from the MA Commission for the Blind today, and it wasn’t encouraging.  I wasn’t coming at it from a good place, having just re-lived the accident and history with the neuro-opthamologist from Children’s that we’re seeing on Thursday.  I was already a little fragile and emotional, and then had to re-do the whole thing again with the social worker.  Only to hear him say “I’ve never had another case like this.”

He’s the only social worker for children in Central MA for the Commission for the Blind.  And he’s got kids who are on home/hospital, unable to attend school, but still receiving services through the school system.  Still getting an education thru the school system.  There are simply no kids who are homeschooled entirely, while visually impaired.

All the technology is paid for by the school system.  Because he’s not on an IEP, and not receiving services through the school system, there’s no mechanism in place for him to receive the technology. I’m legally allowed to homeschool him, and he’s legally entitled to services though the school system – but we don’t know how to mesh those two things.

There are steps and processes, and plans going forward.  I have to brave the lion, and contact the school system.  My social worker, who’s lovely, is going to do some research too.  We’ll figure it out.  I’m just tired of fighting.  I need someone to look at my boy – my sweet, sweet boy, who struggles so hard and has lost so much, and just HELP him.  Give him what he needs without making him go through all of this.

Nov 02

Don’t discount what you’ve been through

I had a session yesterday with Sam’s therapist, just a catch-up sort of thing – because in so many ways, he’s improving, but there are still issues that we grapple with.  The bigger issues now seem to be focused on dealing with negativity – he’s really uncomfortable with sitting with and handling negative emotions.  He looks to Marc and I to help him, to make it okay.

The reality is that we do make it okay.  When we can.  And there are a lot of ways in which we subtly sort of rearrange things to accommodate the anxiety.  Planning parties to happen at home, homeschooling, planning playdates to happen here.  There’s lots of reasons for it – and they’re all logical and make sense.  He’s still got all the dietary issues, and getting him fed is easier at home.  He still can’t see – or at least we don’t know what he can see and what he can’t – and all of that is easier for him at home.

I worry about how much accommodating we do – by lowering our expectations, he (and we) end up accepting so much less for him. He misses out – on playing with his friends, on spending time doing things that other kids his age do without hesitation.  When I asked the therapist about that – she pointed out that it’s much more about work that Marc and I have to do – we have to be willing to watch him struggle and suffer.  To be anxious and scared and work thru it.  She said to me (and I’m paraphrasing) “don’t discount what you’ve been through over the past year – it’s not just about whether or not he can handle this, it’s about whether or not you can watch him do it.  To have to see your child suffer and not be able to fix it – you had to do so much of that.  Can you handle more of it?  Can you intentionally, at this point, put him in the position to feel those negative emotions and let him deal with it?”

The reality is that I can’t.  Not yet.  There’s so much negativity that he had to deal with, so many things that I couldn’t fix or couldn’t help – at this stage, I need to be able to do this slowly.  I have to be able to push him slowly, slowly, and give myself space to be okay with it.  The reality is that no parent likes to watch their child hurt or be afraid, and we, Sam, Marc and I, have done so much of that in the past year.  We need space and time.  Time to not be scared, time to be able to heal.

I wish it didn’t take so long.  I wish I could wave a magic wand and be over all the trauma, that he could be over all the trauma.  But the truth is that it’s going to take more time.

 

Oct 28

Ugh

Not a great night.  Not a terrible night, but not one that I’m going to want to relive any time soon.

It’s Friday night, and we always do Shabbat dinner.  Almost always.  But every now and again, something will come up and plans will change.  This Friday, our rabbi is hosting Challah-ween, and it’s a huge party, with between 20-40 people.  In other words, it’s the last place in the world that Sam wants to be.  Julie wants to go, Marc thrives in settings like this, and even Jessie was happy to go.  As long as I was going.  Or Lilli or Sarah.  Just someone other than her dad, who will get caught up in conversation and not necessarily notice my little introvert who’s feeling awkward and out of place.  Someone other than her little sister, who is just as introverted, if not more so – and will need at least an hour to come out of her shell.  Who will, in fact, spend much of that hour it takes clinging to Jessie and asking to go home.

Lilli and Sarah were supposed to be going – and I felt so guilty about not doing Shabbat at home tonight that I offered to take Sam’s friend home from school and keep him overnight.  Jessie would be fine, and I could write, or crochet or binge watch West Wing.

I came home from work, and checked the mail. I got a letter from the Massachusetts Commission for the Blind, notifying me that they have received notification that Sam is officially legally blind, and must surrender his license to drive immediately.  Which, okay, I knew was coming, and he’s ten, so not so much driving right now.  And there’s no guarantee that he WON’T ever be able to drive, especially since he hasn’t been able to sit thru and participate in a vision exam, so it’s entirely possible that he can get a pair of glasses.  And he’s only ten, so his optic nerve is still “squishy” (that’s the technical term) and may improve on it’s own.

Then we realized that the girls aren’t going – and my poor Jessie… I just felt like crap.  It’s not a big deal, she went, and she’ll be fine – but still… I felt like crap.  I feel like crap.  I hate being torn between the kids – like either choice I make is going to screw over one of them, and it’s just a matter of choosing which one can deal with it better at that point.  And in this case, there was nothing I could do.  Devin was already here, and the best I could do is offer to let her stay home.  Which she didn’t want to do.

All in all, a crappy night.

But the girls are off with Marc, and Sam and his buddy are tucked up with Netflix, take out chicken, and French fries.  I’ve got West Wing, and a salad, and three books on tap to read. So all is not lost.

Oct 27

All is well

This is where I’m supposed to be now.

We’re back to a state of equilibrium.   I used to think that we were too lucky – that things were so easy.  Not that they were easy, because they weren’t.  The kids fought and argued, I worried about them.  We never really had enough money, the laundry was never done, and I was always sick of doing dishes.

But Marc and I loved each other, and the kids were all doing well.   We never really had a lot of money, but we could afford what we needed.  Then the accident happened.

Actually, it started the fall before, when Sam started developing the abdominal issues.  The whole fall was constant doctor’s visits and blood work and stool samples.  And then we spiraled into massive anxiety and school refusal.  It was a whirlwind of psychiatric visits and endless calls to and from the school adjustment counsellor.

We had just pulled the plug on that – had literally filed the paperwork that day to start homeschooling.  Then the accident happened.  And it was June before our world started to settle.  July before things started to resemble our life before the accident.

It was a time dividing year.  Life is either before the accident or after.  We emerged from it scarred in more ways than one.  Literal, physical scars – Sam will forever wear a reminder of that day on his chin.  And his vision will never be the same.  We got a dog.  My husband is a lot older than he was at this time last year, he’s worn down and anxious.  I almost think that he was impacted more than anyone else in a lot of ways.  So much of the burden lays on him.  We divide what we’re responsible for, I handle the referrals, the doctors visits.  The grades and the teacher conferences.  The playdates and the pick ups,  the moods and the medicine.

Marc manages things differently.  I’m emotional, I’m going to yell at the kids when I need a break, and cry when it’s too hard.  Because sometimes it still is.  Sometimes the enormity of all that he lost, all that we lost, on that day he slammed into the car, it’s too much.  The worry is overwhelming, the demands of homeschooling, the question of what to study and how, when he can’t see the words on the paper.   But I process it, somehow, and move on.  Marc compartmentalizes it all – and ignores it entirely until it’s too much and then feels all the feels at once.  Not unlike the way that Sam manages to handle it.  He just makes it okay – until it isn’t.  Until it hits him that he’s lost so much of his life, his daily life, his legos, his coloring, his bike.  Pizza.  Then he falls apart and feels all the feels.  Until it’s done, and he packages it all back up and goes on.

The girls are impacted too – I think they’ve grown and matured a little.  I also think they’ve gotten a little sadder, a little less innocent about the dangers of life.  I try to make sure that they still have my attention and my focus.  My patience, even though that seems to be forever lacking.

This is where I’m supposed to be.  It’s not easy, but it’s so much easier than it was.

Oct 13

Jewish holidays

I like the Jewish holidays.  I especially like the fall Jewish holidays, because they’re the ones that I can celebrate just as a regular Jewish person.  There’s no conflict with Christmas, like there is in December and Hanukkah.  There’s no stress over whether or not I can give the kids cereal or pasta, like there is at Passover. Rosh Hashana, Yom Kippur, and Sukkot and Simchat Torah – those are much more accessible for me.

Rosh Hashana is the New Year – and I was good with the New Year celebration.  In theory, anyway.  I like a new year.  The conflict this year was that Sammy didn’t want to go.  I mean, Sam doesn’t often want to do much of anything that has to do with the synagogue this year, and family parties are challenging.  Not impossible, but hard.  But I have three kids, not two – and celebrating the holidays with one third less children was really hard this year.  I just missed him.  He was home, perfectly content, playing video games and hanging with the dog – and bringing him would have been really hard for him.  But I was miserable and sad without him – so the day wasn’t all that much fun for me.

The thing with Yom Kippur – it’s a little more weighted.  Yom Kippur is the day when you reflect and pray and the myth is that God seals your name in the Book of Life, decides who will live and who will die.  Who will suffer and who will have an easy breezy sort of year.  You see my problem?  I refuse to believe in that sort of diety – the one who decided on a September day last year to make last year a living hell for my boy.  And the thought of apologizing for my sins, the idea of reflecting on what I did and how I could have done better – it just seemed… wrong, on so many levels.  In terms of my own mental health – the last thing I want to do is look back and wonder what I could have done better or differently.  There’s so much guilt there all the time, just under the surface, and I deal with it.  I’m not going to deliberately go down that road.   I told Marc that I was unilaterally sorry for anything I had done to hurt him, and that I unilaterally forgave him for anything – but also that we had survived the year.  We got thru it, with our marriage, our kids, our finances, our mental health basically intact – and any harm incurred during the process…. well, we did our best.  And sometimes, when the chips are down, and you’re in and out of the hospital and your son is wishing he was dead… you do your best, and if you’re still standing on the end, you count it as a win and move on.

It wasn’t a great year for the fall Jewish holidays for me.

 

Oct 10

Columbus Day

It’s been an odd month.  Rosh Hashana was last week, and that took up Monday and Tuesday.  The kids went back to school for Wednesday and Thursday and then had Friday, Saturday, Sunday and today, Monday, off.  Back to school tomorrow, and then off on Wednesday for Yom Kippur and then back for Thursday and Friday.  Marc is working a zillion hours a week, rarely home before nine or ten most nights, and I’m home with the kids.

Jessie is in eighth grade this year.  Eighth grade is almost high school, which is a heart beat away from college and college – well, that’s pretty much an adult.  She’s morphing ever faster into this teenager, but still can spend hours playing on the floor with Julianna and some dollhouses.  Which happened today – and it’s blissful when it happens.  Miserable when it deteriorates into sniping and squabbling, but when it’s good – it’s lovely.  She spends a lot of time in her room, doing homework and working on Model UN research, but she snuggles up to me at night and comes with me to walk the dog.  She still likes me.

Sam is …. my Sammy.  He’s improving – he’s open to going out and doing things, and is willing to go shopping or apple picking and is counting the days until he can start playing D&D with Marc.  It’s still hard – he can’t see well enough to DO all the stuff he wants to do.  He wants to ride his bike and it terrifies me.  He wants to start a car fund to start saving money for his car – and there’s no guarantee that he’ll be able to see well enough to get his license.  He falls apart at the thought of getting eye glasses, and just mentioning an upcoming doctor’s appointment freaks him out.  But he’s happy – he’s cuddly and cute and friendly most of the time.  Homeschooling – this is going to be an exploratory semester for us.  We’re still waiting for the equipment and information from the Mass Commission for the Blind, so we’re going slowly – working on trying to catch up with math and studying the upcoming election.

Julianna is thriving.  Just thriving.  She’s doing very well in first grade, she’s got a real strength in writing and reading.  She’s getting better at navigating the playground and the social politics.  I want to homeschool her too – but when she’s doing so well, it’s hard to justify taking that on as well at this point.  Sending a kid to school is easier, you don’t have to plan the curriculum or worry about the future – it’s all packaged and ready.  Just add kid and go.  So to speak.  My hope is that she’ll continue to thrive, and then get into the GSA program that Jessie did, because that was transformational for her.  If not, if it starts to get to the point where I see her struggling, I can always pull her at that point.  I don’t honestly see Sam going to back any time soon.

Sep 30

September Round Up – Sammy

I haven’t posted in a while… no real reason.  Life got a little crazy lately.  I don’t know that it’s that life “got” a little crazy, I just… haven’t posted.

Sam is officially legally blind.  What that means… is that he’ll be able to access services through the state to get equipment to make it easier for him to see.  Is he actually blind?  No.  He can see to walk around, to see trees on the side of the road.  He can live his life, and if you aren’t paying close attention – you’d never know.  But he can’t see well enough to read, or put together legos, or write.  Is that something that could be fixed with glasses?  Will it get better?  I don’t know the answer to either of those questions, and nobody else seems to either.  He’s still way too traumatized to sit through a visual exam, and he’s young enough that the doctors won’t rule out (or guarantee, for that matter) that his eyes won’t just fix themselves.   If I had to guess, I’d say that his vision is probably better than we think, and that getting glasses will help.  But guessing doesn’t help, and until he’s able to participate in an appointment with an eye doctor, this is the situation we’re in.  Or maybe I’m just being overly optimistic, and I should accept the disability and adjust accordingly.

There are certainly deficits in what he can see.   But I don’t know how profound it is – the low vision doctor says he needs 6X magnification and the contrast has to be really pronounced.  It’s not that I can hand him a worksheet and expect that he can see it and fill it out.  But I can point out the foliage on the tree outside, and he can describe it to me. I can hand him my phone and send him out walking to go pokemon hunting and feel like he’s safe and capable of navigating the walk.

His taste buds are starting, so, so, slowly, to heal.   Just this week, we’ve added in cinnamon toast, apple cake, taco meat and rice, and shepherd’s pie.  That’s… phenomenal.   We’re not 100% yet, he still won’t really touch dairy, or red sauce, or chocolate.  And of course, fruits and vegetables are off the table still.  But they’re starting to come back, and last night, he said (after telling me a few times that he wasn’t going to go trick or treating because he can’t eat any of the candy) that he would go out with us on Halloween, because that way, when the taste buds heal entirely, he’ll be able to eat the stash.  He’s got a little hope now, that things are getting better.

Homeschooling is going better.  It depends entirely on the day.  Some days, I feel really optimistic and in control, and some days, I feel like a dismal failure.  We’re doing a lot of audio books and documentaries and reading out loud.  I’ve got a math curriculum and we’re working through that.  Until we get the equipment to help with the reading, there just isn’t much more I can do.  We’re starting an election unit after the high holidays, and then moving into a history of Thanksgiving.  I’ve set up playdates a few days a week after school, so that he still gets opportunities to see his friends.

 

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