On admitting it's ME who is overwhelmed and frustrated...

We are at Friday of spring vacation week.  Tony is taking today off, which is a huge, huge, HUGE relief.  It's been a long week.  Mostly for me, more than Janey, and that is what I'm thinking about.

Last summer when I talked about how Janey's life had little variety, I was very taken with the insight a lot of you gave me---that Janey might not mind the lack of variety, and in fact might like it.  I think you were right.  Janey takes enjoyment in simple things, and she loves having her days follow a pretty predictable script.  She is able to handle changes more than some kids with autism, but she likes it if the changes are within the framework of a general sameness.  With that in mine, I decided this week I would follow Janey's lead, let her set a routine and go with it.

Janey set a routine the first day and without me reminding her or prompting her, she requested it be followed for the next three days.  This is how it went....First, she woke up about six.  I snuggled with her a bit, we had some breakfast, she watched a little bit of TV.  Then she said "Go to the ice cream store?", which, as you've probably heard, is the convenience store near us.  We did the routine of getting dressed for the day, and walked to the store.  Janey loves this.  I got coffee and she looked for a long time at the chips and picked a bag, we payed and walked home.  Then she ate the chips outside while I had my coffee.  

Next, we went back inside for a little more videos time.  Then, Janey asked for a shower.  I set it up and she had one---washing her hair or not depending on if she needed it.  I let her take as long a shower as she felt like.  We got dressed again, a little more videos and then Janey asked for a car ride.  I suggested a place, which didn't really matter, as she wanted simply to be in the car.  We drove, got out wherever I had said, Janey put up with wherever we were for about five minutes, then asked to go home.  

The huge hug when Daddy gets home

When we got home, Janey screamed because the car ride was over.  That's where the routine still was routine, but not a very fun one.  For the rest of the day, until Tony came home early about 2 (he went into work very early so he could come home early), the routine was to scream and ask for Daddy.  As early as I could do it without it being too long, we went outside to wait for Daddy.  When he got home, Janey acted like she was seeing a returning soldier after many long years.  The smiles and hugs were incredible.  Then they went for the kind of car ride she really likes, long and without destination.

By last night, I was in a mood and a half, and I realized something.  As much as I want to be the perfect autism mother, as much as I feel like my own wants shouldn't matter, they do.  And I was bored, frustrated, hurt, tired.  

The ride yesterday was the last straw.  For the ride, I said we could go to Panda Express.  None of us but Janey like this fast food Chinese food, but she loves it.  However, I didn't realize that she had a routine in mind.  There was a line when we got there, as it was lunchtime.  I don't think Janey had ever experienced a line there before (it's not the most popular place, and is right next to a Five Guys and a Chipotle that get most of the customers) and she started freaking out and pushing people.  I got her to wait, we got our food, we sat down and she quickly ate the beef dish she likes, in about three minutes, and she was ready to go.  I had barely had a bite.  She grabbed the tray and wanted to throw it out.  She was rapidly becoming frantic and hysterical.  I gulped down a few bites on the way to the trash and threw out the rest, as the few other customers stared.

Then, Janey wanted to go in the Chipotle.  I realized that probably every other time she'd gone to Panda Express, it was because the boys wanted Chipotle, and Tony took her to Panda Express instead.  Then, they came over to see us at the Chipotle.  The fact that the boys are away at college and Tony was at work didn't matter.  We were supposed to go in the Chipotle and see them.  I got her into the car, screaming and highly upset, and she spent the rest of the afternoon highly angry.

When Tony got home, I started ranting.  I had done everything I could for four days to make it a week that would work for Janey.  Although I fully understand that she has a need for routine, although I know as well as anyone can that she is easily triggered by changes, I was just tired of it.  I was tired of trying so hard to keep her happy.  I was tired of dealing day and night with screaming.  I was tired of....well, all of it.  

And that's the thing of it.  All of us autism mothers and fathers are human beings.  We do our solid best.  But sometimes, it gets to us.  And that is where it gets hard.  Because what do I do?  There is no break from this.  There is no end to it.  There is no day that Janey's needs won't be overwhelming.  This is my life.

Last week I talked about the lack of programs or activities for those like Janey, with high needs autism.  The truth is, Janey doesn't much want outside activities, I don't think.  I do.  I want the break they would give me.  But the few activities that do exist---classes and therapies and so on---require I be there with her.  And that is just harder than no activity at all, and not worth it for something that in my heart I know she doesn't really enjoy anyway.  It's me that needs variety, and a break, not Janey.  

I got over my rant last night.  I am lucky in so many ways, and one of the top pieces of luck is one heck of a wonderful husband, who is taking over with Janey today.  But I keep being struck by that one thought---parents of kids like Janey are people too.  Sometimes it seems like we are supposed to not be. But we are, and sometimes, we are overwhelmed.

"Take Care of Yourself"

I've been told to take care of myself a lot.  It's good advice.  I've been told the story about how on airplanes, they always tell you to put your own oxygen on first before helping your child.  Yes---that is true.  But the simple fact is, with a child with autism, it can be very, very hard to take care of yourself.

I've had some horrible jaw pain off and on for about a month now.  I keep hoping it will go away, as pains usually do, but it hasn't.  I'm sure it's nothing serious, but it's been bad enough today that finally tomorrow morning I have a doctor's appointment.  I wanted one sooner, like today.  But by the time that around 10 am I realized the pain was enough that I really finally needed to give in and get some help, it was too late.  Too late because by the time I could get an appointment, I'd be too late to greet Janey's bus.

Now, that's not just an autism problem.  Of course, everyone needs to be home for their kid's bus.  However, what hit me today is that most people would have options if it were just impossible a certain day.  They would have people around that could care for their child.  The child might be in after-school.  And at 11, Janey would probably still be a bit young, but by 12 or so, she could come home alone even if really need be.  I had none of those options.  Nobody can watch Janey but Tony or me.  It's not that they wouldn't want to---it's that they honestly are not able to do it.  She is too tough.  The after school program has a ratio of students to kids that effectively excludes Janey (and I know the law might say they HAVE to provide for her, but what the law says and what can be done without a long, expensive fight are not the same thing).  She certainly can't stay alone, ever.  The only option would be having Tony come home early.  Because of all the time Janey spent in hospitals the past year, he doesn't exactly have a ton of sick leave left, so that is a total last resort.  And so---I couldn't make the appointment for today.

This is a little example of something that comes up over and over.  I appreciate people telling me to take care of myself.  It's a very good reminder that I should rest when I have a chance, and not feel guilty about it.  Sometimes, though, taking care of myself just isn't possible.  Even making the call today to get the appointment involved talking over Janey's screaming, as she was upset I was on the phone.  A lot of times feel like that.  If I take care of myself, I am not taking care of Janey.  As if to illustrate, as I tried to edit this paragraph to better say what I want to say, Janey asked me to cuddle her.  I tried briefly to put her off, and she started screaming, biting herself and by the time a minute was up, she was hysterical.  Ignoring her is not an option.

And I am one of the lucky ones.  I have a husband who does more than his fair share.  I have school, which allows me to nap when I haven't slept and to do dishes and laundry. There are people who are single parenting, or have adult children with autism no longer in school, or have other young children.  I won't say I don't know how they do it, because I hate that phrase.  But I know their lives are far harder than mine is.  And mine, to be honest, is fairly hard at times.

I asked on my Facebook page that is a companion to this blog about what respite people have.  I am going to write more about the answers (without names, of course!) in a future blog entry.  But I can already see that countries other than the US do a MUCH better job than we do here.  Here, it seems much depends on the state, or the county, or city, or even part of the city you live in.  It depends on figuring out the complicated systems.  And even with work and determination and knowledge, there is often just no help available.  That is a disgrace.  I am not political.  I am not blaming any party or ideology.  Autism doesn't play politics.  This is something that is going to affect EVERYONE.  If the rate of autism is what it's said to be, then there are going to be a very lot of families that just can't keep functioning, keep working, keep paying taxes, and it's pretty foolish to not spend the amount needed to give desperate families a little time for such luxuries as doctors appointments and sleep.

School Starts, My Anxiety Rises

Janey started school yesterday.  Although her classrooms are sort of ungraded, she is starting 4th grade.

As always, although I'd been feeling a bit eager for school to start, the first day seemed to come suddenly.  However, we got out to wait for the bus on time.  It was supposed to pick up Janey at 6:29 am.  At 8:30, we finally gave up and drove her to school.  No bus showed up.  Not at all.  Now, if you have a child with autism, or, as a matter of fact, if you have any child at all, you can imagine that waiting outside your house for 2 hours for a bus that never shows up is not easy.  And of course, you can't go back in the house, because the minute you do that, the bus will show up.  Or you will think it might have.  It was a long 2 hours. The picture show the start of it, as Freddy was leaving for his first day of his senior year (he takes the commuter rail to school)

When we got to the school, we were told there were all kinds of bus problems, and that "you need to call the hotline".  Well, I had.  I'd called the transportation hotline twice at that point, each time was on hold for over half an hour and then was cut off.  I called twice more during the day, figuring that around noon there would be less volume.  One of the times, I stayed on hold for 45 minutes.  I never got through once.  When we were at the school, one of the school employees said something that is one of my least favorite things to hear "The only way to get this fixed is for you to stay on it as a parent".  NO.  I looked up and saw the staff directory for transportation for the Boston Public Schools runs twenty people.  That isn't the bus drivers or aides, that is the transportation ADMINISTRATION.  It is THEIR job to make sure kids are picked up by buses.  It is THEIR job to provide a hotline that actually works.  I am sure most of those 20 people make more than my husband does.  I emailed 3 of them yesterday, letting them know the bus never came.  No answer.  No surprise there.

I am ranting a bit here.  But it's this kind of thing that I find lacking in the schools.  There are wonderful teachers, principals, staff---I've barely ever met anyone that I would not trust my child to happily.  But it's a broken system in so many ways, and that affects the education.  For example, for summer school, the bus almost never actually reached our house before school was supposed to START.  It had more places to go before it got to the school, which is a 20 minute drive from our house even if you go straight there.  So the 5 hours of summer school was never 5 hours.  Janey's school this year runs from 7:30 to 1:30.  The bus showed up today at 7, with lots of other kids still to pick up.  They aren't going to get to the school. by 7:30.  And school seems to actually end at 1, not 1:30, to start getting kids on the buses, which is a huge job, I am sure.  So every day, there is teaching time lost, lots of teaching time.

These issues affect all kids, not just kids with autism, but like so many issues, autism makes it tougher to deal with them.  Janey needs consistency.  I considered just keeping her home yesterday, because if we drive her one day, she wants to be driven every day.  She needs the routine of the morning, not to get them when it's over.  She needs every hour of instruction she can get.

I realized yesterday part of what was upsetting me was that it was my first day in many years not taking a child to the Henderson School, Janey's old school.  I know she is doing well at her new school, and that there are great teachers and therapists there.  But I've never met her teacher in person.  She has a new ABA specialist this year, who I have also never met.  I don't feel like part of her new school.  I didn't know a soul in the office yesterday.  I felt the sting of having to change schools all over again.  I wanted the day to be like other first days, a happy reunion of friends I've known for years, with so many people greeting Janey and being excited to see her.  I have to remember that is MY issue, not Janey's.  I think she's happy where she is.

Rant over.  I feel better having written about it.  I hope everyone who reads this is having a great start to the new school year.  Sit back and have an extra coffee.  That is what I am about to do.