Frustration with the schools (not the teachers!)

 Over the years, I've been a big cheerleader for the Boston Public Schools.  I am a fan of public schools in general, and I've always tried to let people know it's very possible to get a very good education in Boston without feeling like you have to send your child to private school or you have to move out of the city.  For those of you not in Boston or near it, the Boston schools don't have the greatest reputation.  I've felt for many years that poor reputation is not justified.  My three children, all very different from each other, have been for the most part well served in Boston.  

My feelings haven't changed when it comes to the teachers, or the therapists, or the paraprofessionals, or the principals.  I can truly say in all my years, which add up to 23 years now, of having my children educated in Boston, I've only encountered two or three teachers, out of literally hundreds, that I would not happily have teach my child again.  Indeed, I've had far more than my fair share of absolutely amazing teachers, of therapists that care deeply, of paraprofessionals that I would trust with my children's lives without a second thought, of principals that took a personal interest in my kids.  

But the school system in general?  The upper management, the central office, the bureaucracy?  Well, I'm not too happy with them.

Nobody can be blamed for COVID-19 existing.  It's a virus.  You can't be angry at a virus.  But I am angry at how the whole crisis has been handled in Boston, quite angry really.

I've talked through Facebook and by phone to many, many other parents in other parts of the US and world, and overall, it seems like most school districts are finding a way to educate kids like Janey.  At the very least, most districts seem to have used the summer to make plans, to find a way to  bring the kids that just don't learn well at home into the schools as safely as possible.  Some parents have chosen to keep their kids home anyway, and that is certainly understandable.

Technically, we were given a choice with Janey---remote learning or a hybrid method, 2 days a week at school.  But after talking to her teacher and hearing what those two days a week would be like...wow.  They would be in one room, with masks on, never leaving the room, teachers not allowed to touch the kids at all, much of the teaching taking place by Zoom meeting even in the room, as teachers would not be circulating. That isn't a classroom model that would work in any way for Janey, or for most kids with autism.  So we chose home education.  Janey's amazing teacher understood that Zoom meetings don't work for her, and she is going to provide us with weekly materials (which she had to do a funding drive to get money for---no thanks to Boston there) to teach Janey with.  

Janey's room at school has no opening windows, none at all.  She rides a bus for an hour each way to school and back.  She will wear a mask for short times, but I'm quite sure she wouldn't leave one on all day.  She lives for walking around the school, for field trips and swimming and dance.  It would be both unsafe and deeply unsatisfying for Janey to go to school as it has been set up.

I attended a big Zoom meeting for Boston parents of special needs kids.  I won't go into it in detail, but it was awful.  A politician was allowed to grandstand for a long time, an ABA specialist took up a long period of time during a meeting meant for PARENTS to ask questions (she had good ideas, but at least 50 parents had questions that there was no time to answer during the too short meeting), and most disturbing to me, a school official outright lied.  He was asked (several times) if teachers were going to be given adequate PPE (personal protective equipment, like masks, shields, etc.)   He said emphatically "Yes!  Absolutely!"  Well, as of last week, I have been told that such equipment is not only not being given to teachers, it hasn't even been ordered.

Even if we had chosen to send Janey to school, school isn't starting in person until October 1st, or at all, even remotely, for another two weeks.  I don't see any other district anyway that isn't even having any school this September, basically.  The schools had all summer to prepare.  This didn't all come out of no-where.  But from what I can see, infighting and attempting to please every politically powerful faction took up the time that should have been spent on one big goal---finding a way to safely educate the kids of Boston.

I know that the powers that be would argue they just can't find a way to safely educate Janey and her peers.  But I wonder---why, elsewhere around the country and around the world, are so many other kids like her back in classrooms already, safely, with teachers that have the equipment they need to be safe, with classrooms that are ventilated, with few enough kids in a room for it to be safe, without a mask requirement for children whose special needs just make it impossible for them to understand why they need to keep a mask on?  

Boston school buildings are underutilized.  Janey's high school has a population far, far smaller than the school was built to hold.  All the time, attempts are made to close some of Boston's 125 school buildings.  Surely, somewhere in the city, there are enough classrooms for kids like Janey, the highest need students, to safely attend school, and surely, there are enough teachers that, if given the proper tools, would feel safe teaching the classes.  I don't want any teacher that doesn't feel safe or supported to teach.  Many teachers have small children, or medical conditions, or the like.  But if only teachers who felt safe teaching were to teach the high needs kids, as is happening what seems like virtually everywhere else, and if Boston could be flexible and open classrooms in buildings that have good air circulation and opening windows, even if that required Janey and others to temporarily go to a different school---well, you would really think a city like Boston could do that.  And you think they would be shamed by seeing that everyplace else pretty much in the world is finding a way to do what they can't seem to do.

We're fine, ourselves personally.  Janey is 16.  Although it's not what we want, truthfully she could stop going to school now and it wouldn't be a tragedy.  I was prepared to have her drop out if the schools had been rigid about Zoom meetings for her schooling.  But there are so many young kids with autism in Boston who desperately need schools.  And although we are managing, Janey is regressing in a lot of ways.  Her toilet training has been, well, set far, far back.  She is talking less much of the time, and lately, especially after seeing her teachers outside in a socially distanced meeting---which was great---she seems to be upset she's not in school.  She can't express that directly, but it's fall.  She knows fall, and she knows that is when you go to school. 

One of the things that was said at that infuriating Zoom meeting for parents, when a parent poured out her heart about how hard this all has been, and how she didn't feel equipped to teach her young child with autism, was that there are many social service agencies in Boston designed to help the special needs community, and "we are going to work with them to get services and help for kids who need it" (not the exact words, but along those lines)  I think of all of this, that makes me almost the angriest.  You are GOING to?  Why hasn't that been happening right along?  Why are there untold numbers of agencies that I know have a mission and funding to help kids like Janey, and that are I am sure are well-meaning, but that don't work with the schools, or each other, that don't ask parents what we really need, that hold endless workshops and support groups and make up nice fliers but don't provide ANY respite, ANY after school programs, ANY direct help, except maybe to a small number of people that know exactly the right way to ask for it and have the means and personality and connections to access the help?  Why can't help be OFFERED to those who truly need it?

I'm angry.  I'm angry that the overpaid, overstaffed, underworked bureaucracy of the Boston Public Schools is failing the children of Boston, and the teachers of Boston, and the everyday citizens of Boston.  I don't get angry easily, Boston.  It took me 23 years to get this angry.  But I'm angry.

October is the cruelest month

A few years ago, when Janey wound up at in a psychiatric hospital, quite a few people told us that October is the month many crises such as the one she was in then start.  They think it's a combination of things---the newness of the school year wearing off and reality hitting, the lessening light, the change in the weather, the lack of big holidays---but whatever it is, a month you would not expect is the month that's hardest for kids prone to being upset.

This October has been tough so far here.  This weekend and the past weekend have been pretty rough for Janey.  She isn't happy.  It's remarkable how long it's been since she's been unhappy like this.  We had a good long run of happy times---of course interrupted now and then by sad days, but it's been a long time since we had a weekend like this and last one.

This weekend, Janey has been screaming a great deal.  We can control the screaming a bit with the old reliable things---a car ride or food---but the car rides get cut short with more screaming and the food would have to be more constant than is healthy or possible to keep back the sadness and anger she seems to feel.

The most frustrating part, for us and I am very sure for her, is how hard it is for her to communicate just what is upsetting her.  Is it physical pain?  Did something upset her when she wasn't with us?  Is she worried about something?  Is she bored?  Is she annoyed with us?  Does she miss her brothers?

We are left, so often, playing a guessing game with her as to what is wrong.  When she is screaming or crying, her already very limited speech becomes even more so.  When we try to guess, often she falls back on her default response---"YES!"  So we say "Do you want a different TV show?" and she screams "YES" when that isn't what she means at all, and we change the show, and she gets even more upset.  I feel awful for her when this happens.  I'm sure it feels like a nightmare for her, being so upset and so unable to explain why she's so upset.

We planned a trip to Maine to see my parents this weekend, especially to see my father, who is home after his awful fall and hospital and rehab stay.  But it's not possible to drive when Janey is screaming.  It's not safe, for her or for us.  And she just cannot be cared for by one person alone when she is in screaming crisis mode.  We tag team.  She's been up now for a long time, and Tony is getting a little hugely deserved sleep while I write this at five in the morning, stopping often to try to calm Janey's outbursts.  I feel, quite honestly, trapped and overwhelmed.

I do believe this will pass.  We've seen times like this before, and they don't last forever.  But while they do last, I want more than anything to find a way to help Janey explain what is wrong.  She is thirteen.  I am sure sometimes what is wrong is that she's bored of us, she's feeling a teenager's angst and annoyance at the world, she is frustrated with her life.  But how do you deal with that kind of feeling when communication is tough?  And I don't want to assume, to say to myself "Oh, she's a teenager" if there is something else wrong.  How do I know?

When the general public thinks of autism, I don't think they think of this.  This isn't the quirky savant, or the toddler full of unlockable, fascinating potential.  This is an amazing, beautiful, complex teenager who is not able to communicate, a person who is not a statistic, or a symbol, or a problem, or a project.  This is my Janey, and I wish so much I could help her be happier.

Thinking about guilt

A few weeks ago, a tough day hit my family.  I thought the toughest part was going to be going to the dentist.  I had quite a toothache, which I had ignored for a while. It was in my one remaining wisdom tooth, and the dentist told me right away it had to come out.  While pulling it out, the tooth next to it fell apart, so they both were extracted.  I have Sjogren's Sydrome, and that does a number on teeth.

At just about the exact time my teeth were coming out, my father in Maine had a terrible fall.  He was on a ladder, and it slipped.  Holding onto the ladder, he was slammed to the ground.  Once he was taken to the hospital, and then to a larger trauma center two hours from home, it was determined that he'd broken both heels and crushed a vertebrae.  Later, it became apparent he'd also had a bad concussion.  He had surgery the next day, and is still in a rehab hospital, not to come home for a few weeks.  Thankfully, he's doing much better, but the recovery was tough.  He's 77, and anesthesia does a number on older men, we've found out.  He was in intensive care for days as they tried to get his oxygen levels regulated, and once at the rehab, he had bouts of scary confused thought.  Now, to hear his voice, he sounds like his old self, but he won't be able to get around without a wheelchair for several months anyway.

The night my mother called to tell me what had happened, the night after the tooth extraction, I was in extreme pain.  However, immediately, I felt I should be there.  I still feel that, a bit.  It wasn't possible. My pain level from the extraction was very high, for about 10 days.  That's another gift from the Sjogren's Syndrome.  I have almost no saliva, and that makes it very hard for a mouth to heal.  I could barely get out of bed.  In addition, our old, old car was in such a state that stopping even at red lights made it dangerously overheat.  We were ready for a new car, but shopping for one?  That was tough.  It was impossible with Janey along, and I wasn't up to watching Janey on my own---Tony was coming home early from work each day to get her off the bus.

The guilt of that week---I can barely describe it.  My father was in terrible shape, and I couldn't get to him.  In my mind, the rest of our reality seemed unimportant.  I kept thinking, over and over "What kind of daughter isn't with her father at a time like this?"

I know that from the outside, things look differently.  But from the inside, guilt is a strong and often irrational emotion.  Guilt doesn't take into consideration that there might be complications, conflicting responsibilities, life realities.  Guilt just pounds away at you.

Gradually, as I had less pain and could think more clearly, I realized that while my father was in the hospital or rehab, he needed me far less than he would once he was home.  There, I would be able to give my mother breaks, and let her get out to get groceries, and keep him company once he was away from the hubbub of the hospital.  My current plan is to wait for when my parents most need the help, and then go up for about a week, during which Tony will come home early from work to get Janey from the bus.  In support of that plan, Tony took a day from work and we finally got a new car, a great deal on a fairly new used car that is 12 years newer than the old car, and will hopefully get us safely anyplace we need to go.

With my clearer thinking, I've realized a few things.  The biggest of them might seem a little unrelated, but it hit me hard yesterday.  For many years, I've longed for respite care for Janey, and with this crisis, people mentioned a lot that we should try again to find it.  But the truth is, as Janey gets older, I am going to be less and less inclined for anyone to care for her but family and the school.  I trust her school completely.  We had a wonderful meeting with her teachers and therapists and program directors earlier this week, and as we almost always are, we left feeling extremely grateful and happy about the level of care they give her.   When she isn't in school, I want her with Tony, her brothers or me.  That is what I feel good about.  I think I'll write another blog entry more about this, but for now, I'll just say that it felt like a relief to realize that, to decide that.

The other realization is that hard as it might be, I need to prioritize.  In other circumstances, of course I would have been by my father's side.  But in our particular circumstance, Janey comes first, followed closely by my own health and that of my other family members, so we are able to continue putting Janey first.  When I am able to step back and remember that, I can figure out ways to care for the other important people in my life.

I write about this at some length because I think many of the parents living the life Tony and I live are faced with situations like this often.  It's not easy to realize that you can't do everything, you can't clone yourself, that sometimes you have to decide what you can and can't do.  It's so good to know there are others out there living this life, making these decisions, and I hope we can all continue supporting each other with understanding and love.

What I wish I could have told the mayor

There was a meeting today at Janey's school to let parents meet the mayor, and talk to him about how the budget cuts would affect our kids.  I appreciated the mayor coming to the meeting (along with a lot of his staff) and I think he's a decent guy.  But a lot of the meeting felt like politics as usual, like broad statements about the future and a vision and tough decisions and a lot of other key words that don't add up to a lot.  We each had a chance to say briefly who we were and what our thoughts were about the cuts (which in Janey's school will result basically in one extra child in each class, bringing the cap in the autism only classes from 9 to 10), but other than that, there wasn't a lot of time for discussion, and what there was, as is often the case, was dominated by a few parents.  I sat there thinking of all I wished I could say to the mayor, if I had his ear.

I'd want to tell him, to start with, that adding just one kid to a class like Janey's is a very penny wise pound foolish move.  I'd want him to understand that Janey hangs on to being able to function in a her classroom as it is now by a thread, often.  She has great teachers and great therapists and a great support staff, a caring principal---we are lucky.  It's not that they aren't doing all they can with what they have, it's more that any kind of classroom is tough for Janey, and for the other kids in the class to get the attention they need, Janey needs someone right with her most of the time.  I've never pushed for a one on one aide.  There are only 7 kids in the about 160 autistic kids at her school that have one (a statistic I learned today).  Janey should probably be among those, and I would guess one or two of those (not kids I know in any way, just a guess) are the result of better parent advocating than I do and not a greater need than Janey has.  If the class has another child, especially a child with a lot of need for supervision, that might be the tipping point where Janey is not able to learn, or not able to be controlled.  It could be a safety issue, or at the very least, a happiness for all involved issue.  I've never pushed for an outside placement, really.  I don't want one.  I want Janey to go to school where she is.  But if it ever became obvious that just wasn't working, I would do what I had to do, and that might cost the schools a lot more than what she is costing right now.

I would want the mayor to understand autism in all its forms.  He used a lot of acronyms, and he has worked with autism groups, but unless he's spent a lot of time with a variety of kids with autism, he mostly likely, in fact almost certainly, doesn't really get them.  He doesn't get the wide reaches of the spectrum, he doesn't get how inclusion doesn't work for every child, he doesn't get how even a small amount less time at school might make a huge difference at home, he doesn't get how a tiny change in routine can be a disaster.

I want the mayor to know he should listen to more than the squeaky wheel.  I think politicians sometimes operate on the assumption that people are going to complain if something is wrong.  Well, if you can't speak, you can't complain.  If you are a parent of a child with autism, and you are just barely hanging on, and you haven't slept for nights, and you have no child care whatsoever, you aren't going to go to budget meetings or rallies.  You need help, but you don't know who to ask or what to ask for.  I want him to want the best for kids like Janey, even if their parents aren't expert advocates.

More than anything, I would want the mayor to know what a great kid Janey is.  I wouldn't want him to look at statistics about a child like her and assume she isn't important.  She can't talk much, she will not go to college, she won't raise your test scores, she won't hold a job.  She is going to need help all her life.  But she is worth it.  She is beautiful, she is funny, she is interesting, she is deserving of love and services and caring and tax dollars.  She is a citizen of the fair city of Boston, as much as anyone else.  I hope the mayor, and everyone else in a position of leadership, understands that every single person, regardless of diagnosis or income or position or ability to demand, is worth caring for.

The days and weeks and months and years

I'm feeling low tonight.   Janey has been fairly good.  She had a great week after restarting the medication, a honeymoon period we often see with something new with her.  Now, she is still fairly happy, but the screams and repetitive requests are sneaking back.  But it's more than right now.  It's how the days and weeks and months and years have been, and will be.

I'm thinking a lot lately about life getting away from me, about all the things I can't do.  I've been wanting to get up to Maine very much, where my parents live and where I grew up.  I want to see my parents and friends there, and just to be in coastal Maine in the summer---something that is one of the best things life on this planet has to offer.  But I can't.  I can barely go to the next room a lot of times.  Any time off Tony might have had for this summer was eaten up by Janey being in the hospital, and he has to work and I have to be here for Janey.  Taking her with me---I tried that last summer, and it didn't go well.  It's the opposite of a rest.  Summer school is a great respite for the time she's there, but then the day is over and again, I am basically trapped.  As is Tony.  There are so few places we can take Janey.  We don't get invited places much.  I can understand why.  If you host Janey once, that's probably about all you can take.  She isn't safe around small kids, she will get bored and scream after a short visit, she'll open your fridge and take things out, she'll find dangerous stuff you thought you had hidden well, she'll wet through her clothes onto your rugs or furniture---all things she's done.  And so we have become, over the years, more and more isolated.  I was thinking of summers past, with the boys.  We visited people a lot, we went to the town pool, we went to the beach, we went into the city.  We did a lot.  And now---we do nothing.

Most of the time, I do okay with doing nothing.  I'm pretty good at keeping myself entertained.  I have my garden, I have books, I have my kids and my husband, I have the Wild World of the Web, I have music, crafts, TV...I'm okay.  But lately, as I face down being 50 in the spring, I think about the things I can't do.  My parents are getting older, and I worry about them.  My nephew Zeben lives on the other side on the country, and I haven't seen him in years.  I have friends I haven't seen in years either, that aren't even that far away.  I am living a life that is smaller and smaller.

Maybe, lately it seems like there's a turn---a turn from thinking "This is how it is right now with Janey.  I can handle this on a temporary basis" to thinking "This is how it is for good.  This is the rest of my life."

This is a self-centered post.  I try not to be that way.  I try to focus on Janey.  But I'm failing at that today.  I'm thinking just about myself.  I would do anything for my children, all of them.  But somehow, I feel like who I am, the me that has the energy to be a good mother, to be creative and proactive and caring, is being chipped away at, by long days at home, long weeks of hoping Janey stays healthy and happy, long years filled with screaming and biting and progress that is so slow that it sometimes goes backwards.

Generally, I have little patience with myself for feeling this way.  There is something in me that tells me "You had kids.  There are no guarantees.  You are her mother, and you are lucky to have her.  You shouldn't go complaining about what life with her entails"   That is true.  But other times, I do a comparison of my life with Janey to the life with the probably 999 out of 1000 other kids, the kids that have friends, can go to camps and lessons and the homes of extended family, the kids that get older mentally, the kids that will someday have a job and maybe a family, the kids that might some day help their parents when the parents get old.  The kids I am lucky enough to have two of.  And in these darker moments, I admit to myself that although being a parent is tough for everyone, it's especially tough for our .1%.

I will get past this mood.  I don't have a choice.  I write about it, as I write about most things, for two reasons.  It helps me to write it out, to work out my feelings---that's the first reason.  The second reason is that I know there are others like me, and I want them to know they aren't alone.  We are out here.  We might never meet in person, for the reasons I talked about here, but it helps to know there are others living this life.