My Autism Insights

Gus has a routine for after school: Watch one PBS show, do homework (Monday through Thursday), watch two more shows until dinner at which time the PBS lineup ends.  What he hasn’t come to accept yet is that periodically, PBS does membership drives that pre-empt his shows.  They are doing one such drive today.

When he came in from school, there was a free Doo-Wop concert on.  I didn’t pay very close attention at first, but when I realized he was still listening to it, I was tickled.  About half an hour later, I realized that the concert had ended and he was listening to something akin to Doo-Wop elevator music and staring at pledge level ads.  When I asked why he still had that on, he got upset that his shows would not be coming on this afternoon.  He honestly expected Electric Company to come on any minute.  Leave it to good old mom to be the bearer of bad news.

Fortunately, the drama that followed was very short-lived and he found something else to watch…at least until his sister decided she didn’t like it and shut the television off.

Today I am particularly thankful.  It’s a frosty 12 degrees with a windchill of -6.  I despise the cold above all other things, so why am I so grateful today?

1. For starters, the cold and light snow we got last night meant a 2 hour school delay this morning.  Usually, that would make me groan, but not today!  Delay meant that  a) I had to cancel my client and b)  no bus stop.  Both of which translate to me not having to be out in the cold.  I did have to clean & move my car, but it was a small price to pay in order to be able to stay home near a blazing fire.

2. I am thankful that our pellet stove is (knock on wood) in good working order today!  It’s a pain to have to clean every morning, but it is rather toasty in here, and for only the same cost as it would be to run a fan.  Gus loves it too, and he’s gotten pretty good about being near it for warmth without being unsafe.

3. On a more serious note, I am thankful that Gus has never been in a situation where anyone’s felt the need to physically restrain him.  I came across the story of  8 year old Evelyn Towry yesterday, and it tied my stomach in knots for the rest of the night.  There is something seriously wrong when a group of adults can’t think of any other means of handling a situation with a child that young - a child with known disabilities - that don’t involve physically restraining the child.  Clearly the school is in need of some education.  Best wishes to Evelyn and her family.

Chime in and share what you’re thankful for today.

Or a brand new year as it were!  Happy New Year, readers!  Today I am thankful for:

• Getting home safely from our brief New Year’s Eve celebration at my cousin’s.  We got hit with a snowstorm yesterday morning, and decided to go out anyway as soon as the snow stopped.  The roads were kind of bad, but the kids were so excited about seeing her kids that we chanced it.  Her son is a few weeks younger than Gus and has a similar diagnosis.  They usually only interact in passing, but yet always seem excited to see each other.  They did play together yesterday, so it seems that they may progress toward being friends one of these days.
• I am thankful for a very patient and kind waitress this morning when we took the troops out for breakfast this morning.  In my infinite wisdom this morning, it didn’t occur to me that we had waited too late to get moving.  Gus has a much harder time with his coping skills when he’s tired or hungry.  So he got upset that we had to go to our table before he was ready, and he was quite rude to the waitress.  I wouldn’t say he had a full blown meltdown, but he was pretty loud and clearly distressed.  The waitress never even flinched or frowned, just went on as if he were being the most docile child on the planet.  Had I been less agitated myself, I would have thanked her especially.  The world needs more people like her.
• I am always thankful for the chance to start fresh and to try new things.  We got some good news yesterday which was a good omen for things to come.

What are you thankful for at the start of this new year?

image from Clipart for Free

Call me a Grinch, but one of my many sources of stress during the Christmas season is the the teacher’s gift.  Not because I don’t think the teacher deserves a gift - she absolutely does.  Not because I don’t want to spend money - money is just tight.  Not because I can’t think of anything to give the teacher - I can think of a million things to buy or make if only I had the money or time.  So what’s the problem?  The problem is that with a special needs child there isn’t just one teacher to consider.  There’s the teacher, the aides (two in Gus’s class) , the therapists (in Gus’s case speech, occupational, counseling, and soon physical therapists), the bus driver and monitors…you get the picture.  Classmates are a completely separate issue, so I won’t even go there.  If you’ve got more than one child and each child has a team of educators…Do you see why I’m stressed?

So because I can’t seem to get my act together this year, I just got what I needed for the service providers.  Between both kids, we’ve got 13 gift recipients - thankfully, MM is in a general education class.  My initial thought was to make small relaxation kits: a candle, bath salts (homemade), and chocolates.  My lack of planning and organization killed the bath salt idea, so we’re increasing the chocolate.  We bought some tins and an assortment of Hershey’s Kisses: hot cocoa, cherry and almond.  Together with the scented candles in some nice wrapping, and that will make for a decent gift, I think.  Who doesn’t like chocolate?  The bus drivers are each getting a tin of cookies.  I’m fairly certain I can get everything assembled before the parties next week.

Am I the only one who hyperventilates over this stuff?  How do you handle holiday gift giving for your child’s teachers and related staff?  If I’m doing it wrong, by all means, please let me know!

It’s been a roller coaster of a weekend for us, and I’m even more convinced that there’s some level of SAD going on with Gus.  His mood swings are disconcerting and I’d be lying if I said they weren’t a little annoying as well.  He’ll be going along just fine and then out of the blue gets very contrary, defiant, and difficult.  He’s even been giving me a hard time about meals, and he’s always been an incredibly good eater.

We spent a very nice day with my sister-in-law and brother-in-law, which included a mountain hike. I thought the outdoor time would do Gus good, and I think it did for a while, but he was also intent on giving me a heart attack.  He made a run toward a sharp drop-off on our way out of the park.  I guess it was a bad idea to have a talk with him about staying away from the cliffs - it seemed to make him curious about what would happen.  He had no fear about them, but before bed he had a meltdown because we’d all been joking about bears being in the park.  He fears the imaginary danger and the real danger is totally lost.  It can be impossible to know what to try to prepare him for and what not to say.

It was also interesting how much he slept yesterday - in the car going to the park, most of the way home, and straight through the night.  I fully expected a 3 am wakeup.

He had a pretty good day today, even though we had to stay in because it was a rainy, snowy mess outside.  He didn’t get grumpy until dinner because I made turkey pot pie, which he usually loves.

Hopefully, the comfort of his school routine will help settle his nerves at least for a couple of weeks, until our routine is shattered again with the holidays.

On a side note, NanoWrimo officially ends tonight, and I finished with an official word count of just over 52,ooo words.  So, now that I’m not obsessively cranking out a novel, hopefully my posts will get a little more interesting again!  Hope you had a great Thanksgiving weekend!  Back to the grind tomorrow!

Yesterday, I had the brilliant idea that I would take both kids to see Wall-E by myself.  I got over that little moment of crazy.  Instead, I traded for a slightly different crazy.  We tried chocolate today.

Gus has never reacted well to chocolate.  It tends to make him a little ‘nutty.’  But earlier this week the kids helped make brownies for their dad’s birthday, so it seemed wrong to not let him have any.  At least I wasn’t dim enough to give it to him when he had school the next day.  It will be interesting to see if I actually get a full night’s sleep…

I figured earlier would be better, so I let them have brownies for their morning snack.  This may seem irresponsible, but considering we were up at 5 and they’d had breakfast hours before, it wasn’t such a big deal.   He was okay for about 2 hours.

By noon, I turned to look at him and asked myself, “What have you done?”  Jumping on the sofa, racing through the house…typical behaviors for Gus, but with an extra manic glint in his eyes.  It was a little scary.  By two o’clock, I couldn’t take any more, especially since he kept insisting on having Charlie Rose on.  I told the kids to go play in their rooms and we were taking a break from TV.  I spent the next hour wondering if I should call an exorcist.  Holy cow, the meltdown!  Defiance, anger, tears, calling names (mostly toward his sister, not me)…At one point I had to carry him up to his room and got an elbow to the lip (I think that was an accident though).  All that for shutting the TV off for 45 minutes.

We did get outside for a little while and he’s going through bouts of calm and crazy, alternating.

Why did I bother since I could have predicted all these things?  Well, I figured that he’s older now and maybe his body chemistry has changed enough that he can have it once in a while.  Clearly I was wrong.  If I get lucky, it won’t corrupt his system for the usual 48 hours and I might have my boy back by tomorrow.

Thanksgiving Thursday Thankfulness tomorrow!

Autism is all over the media these days.  I don’t think a day goes by now that someone, somewhere isn’t talking or writing about it.  It wasn’t always this way; remember when you barely even heard the word?  Yet now there are those who seem to think it’s okay to capitalize on others’ hardships (that’s always been the way, maybe), using the rise in autism awareness as an excuse to ridicule/chastise/insult…I recall the stories over the summer of kids with autism and families being treated horribly.  I remember reading the comments on Internet articles that made me wand to go around the country smacking people for their ignorance.  But it has dawned on me that they really have no clue.

These people seem to think that if you are a parent of a child with autism, you must fall into one of two categories.  If you are still at the point of anger/sadness/fear, then you must just be seeing attention? money? a foundation to send your family on a Parisian vacation?  If you’ve come to the point of acceptance where you can acknowledge the challenges of autism but can also appreciate the awesomeness of your child, then you must be - I don’t know - Pro-Autism? (Which is probably something akin to Pro-Abortion - and an equally ridiculous label.)

What it comes down to, I think, is simply that these (many) ignorant people just have no frame of reference and can’t even begin to understand autism.  You might be thinking, ‘there’s no excuse for ignorance these days.’ But, isn’t there?  Come on, we all know how accurate the Internet can be, right?

Anyway, I’ve come to realize just how easily I could have been one of those people.  Some days, life with Gus has been like a Parisian vacation: traveling around a beautiful country where I don’t speak the language.  With some guidance it can still work out all right, but without it…could be pretty awful.

Let’s look at one scenario: Take a person who had very little experience with babies and small children (like me). This person had a child and knew from the beginning that her son was very sensitive, but didn’t think much of it.  And he was awfully cute, so she just adapted and made sure everything was quiet and not upsetting to him.  Anyway, newborns weren’t supposed to sleep, right?  Mother and son grew very close and developed their own internal communication.  It didn’t seem strange that he never asked for things; he had lots of small words; he was acquiring language.  Didn’t all kids repeat those words over and over?  What else were they supposed to say?  And she knew what he wanted most times, so he didn’t have to ask.  It did seem a little odd that he rolled instead of crawled, but everyone develops in different ways, so no big deal, right?  She thought it disconcerting that when his entire daycare class was at one end of the play yard, he’d be at the other end - alone.  But then again, she often liked to be alone; maybe he was just like her.  It was all good for about eighteen months.  Then when the ‘meltdowns‘ - hitting, screaming, kicking (not great for a pregnant belly), wailing inconsolably - started, this mother found herself at a crossroads.

She could head down the path marked, ‘Bad Bratty Kid - Discipline,’ or the road marked, ‘Normal Terrible Two’s - Proceed as Usual,’ or the way marked, ‘Get Help.’

Do you see how easy it is to end up down a negative path?  With no direction, no frame of reference, or even worse, bad guidance, anyone could end up down that mean, intolerant, bad road.  I had no frame of reference, but I was fortunate to have people around me who did.  They were my compass.

Unless they are scouts, how many people always have a compass with them?

I guess my point is that I’m feeling less angry at the ignorant, intolerant people of the world who say such awful, judgmental, hurtful things about people on the autism spectrum.  I’m feeling a tiny bit more tolerant, a little more empathetic.  The behavior is not right, but more worthy than pity than a beat-down.  At least that’s where I am today.

Weeks like this, when everyone is feeling awful and communication is essential, make me truly appreciate just how far Gus has come over the last few years. He’s very verbal now with his main speech issue still being pragmatics. But there was a time that I remember quite well when he stopped developing language.

From around 12 to 18 months, he was acquiring words at a fast rate. Then around 18 months, he didn’t exactly regress, he just sort of stopped. And instead of starting to put those words together to communicate, he fell into a pattern of constant tantrums. The winter between 18 months and 2 was the worst we’ve ever had. I was pregnant and home bound with a child that I didn’t understand.

Fast forward five years and we have a child who can tell me exactly how he’s feeling.  Last night, he had a stomach ache, but didn’t feel like he was going to throw up.  This morning, his head was hurting a little bit, and his cough was “50% better.”

All his progress was a direct result of intensive education from the time he was 2 and a half.  Speech therapy, a brief time with PECS  and ABA for 2 years  all helped Gus to be the boy he is today.

1. The children stayed up over an hour past their bedtime to watch Pokemon: The Legend of Dark Rai and still got up at 5:30 am.

2. The sleep-deprived children were fighting over every little thing, culminating in an argument about stuffed animals.

3. The stuffed animal argument significantly delayed the tooth-brushing that preceded the shopping trip.

4. Your older child decided to leave without you.

5. Your older child was loud enough to be heard clear across the supermarket - the PA system would be a whisper by comparison.

6. As soon as the groceries were loaded onto the conveyor belt, the older child ran away to check out a Kirby video and had to be apprehended by the five year old.

7. The cashiers knew your oldest child by name and were trying to help keep him from running off so you can pay the bill.

Next time I think I might just make egg salad to send them for lunch and I’ll wait the extra day to buy groceries. One. More. Day.

“We’re just having one of those days,” I said, trying to corral my two soaked swimmers toward the car, one dragging her feet, the other clearly agitated and not wanting to walk.

“What if I find myself saying that every day?” another mom asked, walking ahead of us.  Wouldn’t we all like the answer to that question - neurotypical and special needs moms alike?

She gave a sympathetic tilt of the head when I stopped suddenly, unable to converse any longer because my son screamed frantically all of a sudden.  There seemed to be sand scratching his legs beneath his swim trunks, already annoying because of their cold wetness. 

Ironic that they were wet at all as the water had been too cold for him to get fully into the lake.  That was okay; I wouldn’t have done any better.  The running toward the deep water without the rest of his group or his teacher, causing me to do a series of sprints from one end of the beach to the other in some twisted sort of Olympic time trial…not so okay.  Mini-meltdown as the teacher tried to help him jump into the deeper (4 feet) water when he stated that he wanted to jump in, insisted that he wanted to jump in….

But the part that made me want to cry was the parent walking with her daughter, making sure to keep a safe distance from my odd family.  We’re not contagious and we don’t bite.  It was just one of those days.  And sometimes we have more of them than other people, but not always.  Not yesterday.  Hopefully not tomorrow, but if we do, we’ll deal.

Stressful day at swim class.