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.

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.



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.



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.

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.