Sickness and good news

Tony keeping Janey entertained as we wait for the orthopedist

First, the good news!  We took Janey to her appointment with the orthopedics department at Mass General.  They said she does have scoliosis, but it's mild enough that we can just wait and see for now.  They said more than a 10% degree of curve means you have it, but it's only at 25% that they start doing bracing.  She's at 12-15% right now.  So we go back in 3 months, and hopefully, things will stay as they are or get better.

Janey was out sick on Monday and Tuesday from school.  She had a cough and cold, nothing severe, but enough to keep her home.  She rarely gets sick.  Of course, she had the Big Sick with the burst appendix last spring, but her staying home for a little sick day has hardly ever happened.  She was in a pretty good mood, and we had a couple of quiet days at home (except for the appointment!)  By Tuesday afternoon, she felt a lot better and was restless.  It seemed like one of the first times I've seen Janey bored, although she doesn't have the words to say that.  But she kept coming up with ideas---"go outside to see Daddy!"  "go for a walk!"  "take a shower!"  She wanted to see Daddy when it was hours from the time he comes home, but we did take a little walk in the bizarrely warm December weather, and she had two showers.

Today was back to school, but the bus never showed up.  Tony had told the driver she'd be out until Wednesday, and the driver said "Okay, see you Wednesday", but somehow, no-one showed up today.  We've had a great driver this year, so we were surprised.  Janey was not happy.  She kept saying "Want to go on the bus?  Want to go on the bus?"  Finally I came inside and checked the GPS tracking, and saw the bus was at her school.  I had already tried calling the hotline for buses, and h ad been on hold for about half an hour, so I called the school, but was told I'd just have to call the hotline.  I then called her teacher, and asked if somehow a message could go to the driver that we hoped tomorrow he'd pick her up.  I called the hotline again, and this time got someone, who said basically "Oh,  yeah, they didn't get her.  I don't know why"  Very helpful.  So I drove her to school, although now the illness had hit me and I had been up most of the night with a sore throat.  Complain, complain, I know!  Janey did well with the change of routine, and it was nice to get to see her teacher and an administrator of her program I've known for a long time who had been out on maternity leave.

I asked on the Facebook group page about other girls with autism and sickness.  It seemed like a mix---some girls get sick a fair amount, but others are like Janey and rarely get sick.  The ones that rarely get sick seem to have a very high pain tolerance, as I think Janey does.  I've seen that pattern with a lot I've read about autism---either a child is sick all the time or hardly ever sick.  I think personally it has to do with autoimmune issues, which is my working theory as to what probably caused Janey's autism.  I think she has an autoimmune system on high alert all the time, so much so that minor illnesses never see the light of day, and that at some point, this affected her brain.  But I am no doctor, and I don't believe in any one cause of autism.  I think that's the case in Janey's particular situation because our family is riddled with autoimmune disorders.  Almost everyone on either side of the family has at least one---diabetes, asthma, Raynaud's Disease, thyroid cancer ---and I have been suspected of having several---Sjogren's Syndrome and early stage scleroderma, in addition to whatever stopped my thyroid from working.  So Janey would come by it naturally.

In speaking of sickness, I do worry about what would happen if I ever became chronically ill, from an autoimmune syndrome or something else.  I don't think I will, but if I did, or if Tony's diabetes became worse...that's a scary thought.  Janey has no understanding of anyone else's illness.  She counts on us being healthy and able to help her.  It's part of a house of cards situation.  If either of us weren't able to care for her, I just don't know how it would work out.  We deal with that worry by just hoping it doesn't happen.  When Janey gets off the bus in a little bit, my sore throat and low fever and aches just need to go to the background.  There's no other choice.  And of course, somewhere in my mind is always the thought that someday, Tony and I will be gone.  That is the black hole of thought, where I just can't go.  What happens then?  To keep living our daily life, we have to put aside some thoughts and just keep on keeping on.

So---I'm off to have some tea and Motrin and await my sweetheart's arrival home.

"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.