Archive | May 2017

A really good day

It was a stellar day all the way around.

Jessie has her first semi-formal coming up, and today was dress shopping day.  On a good day, Jessie and I don’t like to shop, and shopping with the intent to purchase is always a challenge.  I headed to the mall with my mother and both girls.  We started at Macy’s and I swear to God, the poor kid tried on 87,000 dresses.  We tried colored ones, and black and navy ones.  Flowered ones, lacy ones and stripes.  So.Many.Dresses.  At the last minute, just before we left to go try another store, we found a strapless one hanging on the rack to be returned back to the floor.  A strapless.  For my fourteen year old.

She tried it on… and it was beautiful.  She’s so tall and so gorgeous, and there was this one moment, when she had come out and spun around in this dress that looked so much more adult than anything else she’d ever worn – and I literally had to blink away tears.  BECAUSE IT WAS YESTERDAY THAT SHE WAS A TODDLER.  I try to roll with it – they grow up, it happens, thank God.  But mostly, they grow up in little bits and pieces, and I swear to God, it happened with Jessie overnight, and I still can’t get used to it.

Sam went to a birthday party today.  Let’s just sit with that a minute.  Sam went to a birthday party today.  With kids from his old school.   He wanted to go so badly – but he’s wanted to go do things before as badly, and couldn’t get past the anxiety.  I was so stressed about it, because I knew how badly he wanted to go, and was so worried that he’d panic at the last minute.  Or worse, try to go and end up embarrassing himself with an anxiety attack.  But he went.  And enjoyed it, played, ate pizza and cake just like the accident had never happened.

And not to be left out… I had Julianna all day at the mall with me.  She was so patient… I had brought a kindle with a movie downloaded already, so she sat and watched that while Jessie tried the 87,000 dresses.  When we were leaving – she and I rode the escalator.  Five times.   And it struck me that this may well be the last time I have a daughter of mine that wants nothing more than to ride the escalator, over and over again, and wants me to do it with her.  She’s seven, and let’s be honest, I hate shopping.  It really might the last time.

I miss having little ones, I do.  But holy cow, I really do love having these three.  The one that’s taller than I am, and so gorgeous, I can’t believe she’s mine.  The one who’s so unbelievably enduring, who handles the worst life can throw at him and manages to come thru it intact.  And my baby, my little love, with her beautiful eyes and sweet, sweet smile, who still wants to ride the escalator with me.  Over and over and over and over.

 

Making the impossible happen

So much of Sam’s case is improbable.  Kids don’t get psuedo tumors.  Pseudo tumors are never this aggressive.  They always respond to medication.  The medication never kills off taste buds for months and months.  And perhaps the most challenging at the moment – kids who are legally blind are never completely homeschooled.  They’re always on an IEP, services are paid for by the school system.

Everyone agreed that I had the right to legally homeschool my child.  And everyone agreed that being certified as legally blind means that certain services and technology are provided.  What nobody could figure out was how to make that happen.

Let’s be honest – last year sucked.  It just did, in horrible ways that I don’t think I’ll ever be able to talk about without sobbing.  And the trauma associated with every little bit of it – from the disastrous January/February with the school trauma, and then the horror of the accident, the recovery and the slow descent into blindness… it was just horrific.  And it’s taken months for me to reach the point where I was ready to really fight it again.

In order for him to qualify for the services, I had to put him thru the IEP process, which involved all kinds of testing, a neuro-psych, a FBA, all sorts of other acronym heavy tests that would be hellish for him.  After putting him thru what he went thru, after holding him down for IV’s and spinal taps and anesthesia… my tolerance for forcing him to go thru pain for less that life-saving procedures is non-existent.

So I stopped.  I devoted myself to homeschooling, reading out loud and working with whiteboards and audiobooks.  I focused on therapy, and getting him emotionally healthy, and academically challenged.  I backed off entirely, and took a breath.  Several, in fact.

I just… chilled.  I focused on getting back to normal, on getting the girls settled and secure, on building up his security and emotional health.  On finding curriculum that excited him, and challenged him and made him feel like he was good at this academic stuff.

On Monday, I met with a contact at the Jewish Children and Family Services.  She’s an advocate, who will work with the school system to enforce his IEP.  The IEP that he didn’t have.  The one that everyone said I had to get in order to get him the services he needed.

I came home, and was just so frustrated.  I shouldn’t have to get an IEP in order to get him the services he needs for the disability.  I have a legal right to homeschool my child.  He’s legally entitled to services because he is certified as legally blind.    There has to be a way to make this work.

There is.  I emailed the State head of the MA Commission for the Blind, and she verified that Sam is entitled to services, and nowhere does it say that it’s dependent on his being enrolled in public schools.  And after that, it all happened really quickly.  She referred me to my local contact, and his boss, and they both came out today.  Suddenly, I’ve got a rehabilitation specialist set up to come and meet with Sam and I, to figure out what he needs to make homeschooling easier.  I’ve got a local low-vision doctor who sounds perfect – he’s great with kids, and they’ve set him up with a double appointment, so my doctor-phobic boy can relax and get to know the guy without feeling a ton of pressure to go fast.

It’s like suddenly, I feel like I’ve got a safety net.  I’ve got a team of people working with me to get Sammy what he needs to live an independent and productive life.  It’s not scary and isolating – and I’m not entirely doing this alone.  There are people who actually KNOW how to deal with a legally blind kid.  Know what kind of technology will work for him, and they’ll work with me, WITH HIM, to figure out what he needs and how to make it work.

It’s a whole new world.

Spring

I love this time of year.  I love living in this neighborhood during the spring, summer and fall.  It’s just winter when everything falls apart.  But for now, the sky is blue, everyone’s lawn is filled with flowers and the trees are all loaded with leaves.

Marc doesn’t want Julianna riding a bike.  If she wants to – then we’ll talk.   But she’s going to have to ask for it, and I don’t think she will.  She’s got a scooter.  Sam’s bike is taunting me, all the time.  I know it’s there, and I know he wants to ride it, but we’re both hesitating.  Marc points out that he can’t see.  Which is, you know, hard to deny.  And will he be able to see anything if he starts going fast?  How will he know to stop if a tree jumps in front of him?

I don’t have the answers.  So for now, the bike sits.  And we walk.

Jessie is at yearbook this afternoon.  She’s wrapping up her eighth grade year and I still can’t quite believe it.  She’s in the eighth grade, and a heartbeat away from high school, and suddenly I’m the mother of a high school student.  I’m the mother of a child considering college and careers and student loans and oh-my-God-I’m-freaking-myself-out.

 

Notes from a spring weekend

It was Julianna’s birthday this weekend.

Seven is undeniably a kid.  There’s no way, not really, to pretend that she’s a baby any more.

Friday night we went out to dinner.  Lilli and Julie had discussed it and decided on the chinese buffet.  It’s the restaurant that we’ve been to the most, over the years.  It’s a quick meal, nobody has to wait for food.  It’s relatively inexpensive (or at least it was when they were little and we paid by their age).  Friday night was especially good this time because it was one of the first times that Sam went and there was no drama.  Absolutely none.  There was a split second, when we first walked in, when he looked back at me and I knew that the smell was overwhelming, but I told him that he’d be okay, he just needed to get used to it – and he did.  He ate, just like a normal kid.  I still marvel at it.

Saturday, I worked in the morning, and Marc took Julianna to religious school.  I had bought a couple of kosher cakes and dropped them off on Friday, so she could celebrate with everyone there.  I got out of work, and picked her up from the BI, and then we picked up her friend Trinity, and we went to the Children’s Museum in Acton.  They bopped all over the place, and then we stopped at a playground so they could run around a little more.  We got coffee, and I brought them home for a slumber party.

Sunday, we had her actual birthday party.  Julie wanted an “at home” party, and I was lobbying hard for a party where I paid a couple of hundred dollars and everything was done for me.  Our place is so little – and it turns out the weather was so crappy – but in the end, the party was a success.  We had 12 kids here, and a pinata, and cupcakes and popcorn.  She got a mint green chair from my  mom, and an easy bake oven from Marc’s parents – and can’t decide what her favorite gift is.

It was a hectic and busy and chaotic and fun weekend.  We crammed in a D&D game for Sam and Marc, and Jessie went to her last Model UN conference and won Best Negotiator.