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. 

There are days when the world wants too much from me.  When motherhood demands more than I have to give, and all I can do it toddle along, hoping I’m not dropping too many things.

Jessie is sixteen, in the throes of college prep and agonies over sophomore year.  Too many classes, too much homework, too many commitments and too much angst.  I know that she needs perspective, I know that she needs to step back, recognize her choices and the consequences, and be okay with those decisions, but part of her likes the stress – and so she continues to put herself in this place, because the stress is part of the process for her.  She can’t see it, and the stress is real and huge and overwhelming and all I can do is try and say the right thing and hope that she doesn’t melt down entirely.

Sam, oh my Sammy.  The IEP process is brutal, unbelievably draining and exhausting and the worst reality that I’m facing is that in order to get what I need for him, I need to relive the worst moments of my life, of his life, over and over again.  Because when I get vulnerable, when I break down and sob, when I force them to see this child in front of them and what he’s been thru and why I need what I need for him – that’s when I get results.   But it’s awful and horrible and draining and I’m worn out.  And all of that is happening before I tackle on dealing with a kid who’s struggling to learn a completely new way of reading and writing.

Julie, my Julie.  She’s the only one who hasn’t demanded too much of me today – and of course, all that means is that I’m feeling guilty because she hasn’t had enough of me.  Did I pay enough attention, did I make her feel left out and lost?

I’m worn out today.  It’s all been way too much, too much emotion, not enough time or energy or answers.  Too much laundry, too many dishes, too much of not being able to get it all done.

Tomorrow will be better.  I hope.