Mornings Suck in Autism Households

That is my theory based on the anecdotal evidence I have encountered.  Maybe not for everyone, but for a lot of people I know that have loved ones on the spectrum.

One morning this week, everything was running along splendidly until I suggested to The Boy that it might be a jacket day as it was below 50 degrees.  No problem!  Yes, he agreed.  A jacket was a good idea.

And then we got to the couch, the time to put on socks and shoes, and wait for the bus.  And the bus was early, and The Boy couldn’t find his hat.  And there was NO WAY he was going to school without his hat…

Add in the stray kitten who had hung outside of the house since the previous evening, meowing away – he was trying to get in while I was marching out to the bus in my robe and slippers to plead for a few more minutes, and Raphael was anxious to get out because he always is, and because he was very curious about this kitten.  Add all of that to The (intransigent) Boy stuffing his feet, face, and hands into the couch cushions to ensure he couldn’t go to school without his hat.

Finally, he’s out the door, but not without a stream of under-the-breath curses about hats and school and buses.  I climb back into bed, and The Man says, “Maybe you should set that stuff out the night before.”

(Can you imagine the dark look?)

Yep.  Mornings suck.

 

PS – Guess where the hat was?  Right next to his bed.  *facepalm*

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Autism and Arthur

Last Wednesday, I told The Boy that a hurricane was headed our way, and there was a possibility we might leave town for the following night.  Immediately, I regretted my carefully constructed, nonchalant approach – he was scared.  “A hurricane??” I explained that it was really just a bunch of wind and storms headed our way and that the power may go out, so The Man and I were thinking about heading out of town for a night to stay in a hotel which would have wifi and power, so we could be comfortable until the storm passed.  He visibly calmed until I added that we might pick him up from camp instead of Grammy because we might head out of town directly from there.  Change in routine equals added anxiety.  Oops.  “We’ll see,” I said.

We watched the Weather Channel religiously that night, and started to get anxious ourselves.  It began to move quickly, it began to slightly move inland, it began to look like it was going up to a Category 2 by the time it would hit us, and it was expected to make landfall exactly where we live, which would mean loud scary sounds, and a definite power outage if nothing else.  By Thursday morning, we were sincerely leaning toward heading out of town.  I had to head in to work for a few hours, and then we would make the determination.  Grammy would pick The Boy up as usual, giving us time to board up the shed and make preparations at our place.

After I got home from work, The Man and I looked at each other and didn’t need to say a word.  We packed some things, grabbed the important papers, secured the back door, and headed to pick up The Boy.  Most people in our area head west, but they jack up the hotel and gas prices as you head inland, so we head south, because even though it is into the storm, it’s usually less severe down there and you don’t have to give up your first born for some A/C and a bed.

Well Hello, Arthur

Well Hello, Arthur

 

We headed into bands of driving rain and wind, and pulled into a hotel about a hour and a half down the coast.  We ran up the stairs to our room and began to dry off and settle in.  And then the real challenge began.

The wifi was broken, he said.  When the iPad finally found the signal, it was too slow, he said, and he started to get agitated.  “Let me see your iPad, to see if I can fix it,” I said.  He refused.  He began to pace, and head toward the door.  He put the iPad onto the floor, none too carefully, and even stepped on it.  “I am DONE with this iPad.  We need to sell it and get a new one.  This one doesn’t WORK!”  He went to open the hotel room door, and I had to use my body to block him from doing so – none too easy anymore, now that he is 2 inches taller than me.  “We need to leave.  We need to go home,” he whined, over and over.  Reasoning doesn’t work at this stage, I knew, but I tried it anyway.  “There’s no power at home, let alone wifi, Bud.  Let’s decide on something to eat for dinner.” He would not be dissuaded.

Somehow, we finally convinced him to go with us to get some dinner, maybe we promised ice cream.  I don’t really remember.  His mood lifted as he was able to check out the toilets at the Wendy’s around the corner, the only place that seemed open.

We headed back to the room, where the wifi finally seemed to work well enough for his tastes.  We ate, watched TV, and got a good night’s sleep. In the morning, we returned home to find downed branches everywhere, but our house was  intact, and the power eerily came back on just about the same time as we walked into the house.  He was home, there was power and wifi, and he was happy.  The storm was over.

ESY Is Different Down Here

ESY, or Extended School Year, has been a mainstay of The Boy’s summer experience since he was six years old.  I have written about some of his experiences in the past, and he always looked forward to it when we lived up north.  Last year, he struggled with adapting to a summer day camp which did not include computers, and was not like school very much at all, although he ended up enjoying the experience and meeting some new (and long-lasting) friends.

Before we moved here, I asked some parents with whom I had connected in advance, through the autism society’s local chapter whether or not they knew anything about the local ESY program.  They had no idea what I was talking about…

“Uh-oh”, I thought.

When we went through the IEP process this year, the assistant director for special education for the school district was involved (because I was trying to get The Boy into his current program, and being the warrior mom that I need to be to get things done from time to time), and she indicated then that ESY for this summer would be a long-shot.  We would have to prove he needed it with data. “I’ve got six years of data backing me up,” I thought.

And this year’s IEP rolled around and his special ed teacher for language arts and math basically explained that even if he did qualify, which she clearly didn’t believe he did, it was very different from what we had experienced up north.  Down here, it was basically one-on-one tutoring with an aide for a few hours a week.

“Oh crap,” I thought.

I immediately began to devise activities with which I could supplement his summer camp – was there a computer camp or cartooning lessons I could find somewhere (and could I even afford it)?

The Boy’s program teacher called about two weeks later to let me know that they had determined that The Boy would qualify for ESY this year, because he had had it for so many years, and that they would continue to collect data next school year to determine whether or not he would qualify for the following year.

“Yay… kind of,” I thought.

Now we need to determine where this “ESY” experience will occur, and how often and for how long.  Luckily he will have his program teacher, which helps with the continuity.  But it remains to be seen how effective this brand of summer enrichment will be toward maintaining the structure and routine that most kids on the spectrum need through the summer months.

sandy boy

First Visitation in a Year

Saturday, we hope to take The Boy to meet his dad so that he can spend the week with him.  He hasn’t seen his dad since last March, last spring break.

countdownThe Boy is excited, especially knowing that his dad has a new puppy to meet and a new car over which to obsess.  I am happy that he is excited, and happy that his dad seems to be making an effort this time around.  But, as always, it is with guarded optimism.  The Boy has been hurt too many times for me to blindly accept that all is sunshine and lollipops.  I won’t trust that this all will happen as planned until we actually see his dad on Saturday.  And not for one second do I believe that there won’t be an impact after Spring Break.

Even when trips like this have gone well in the past, there has always been an adjustment back tour normal routine, household rules, and expectations.  And I am preparing everyone here that hasn’t experienced this first-hand before.  The Man says he understands and is ready, as do his teachers – I have prepared everyone to the best of my ability for the inevitable transition that will occur when he returns.

And if it doesn’t go well, or doesn’t go at all, it’s a whole ‘nother story, as you can imagine.

But right now, we are cautiously optimistic, glad to see The Boy’s excitement, and holding our breath for now.

Out of Sync

I find myself really empathizing with The Boy this week.  My post yesterday highlighted how important it is to have something that helps you calm down when you get ramped up, and I’ve been ramped up since Monday morning.  Along with that, my routine has been blown to smithereens in the past week.

You see, today should be the weekend.

256px-Less_busy_desk_red.svgI have worked everyday since last Friday, and by my calculations, in a normal workweek of five days on, two days off, today would be an off day.  But it’s not, and I am all discombobulated, and out of sync.  I have three more days of work until the weekend, and if I am able to keep from snapping at someone at work, it will be a miracle.  It’s a busy time for my closest colleague, as her half of the business has a big roll-out at the end of next week, and right now we are all chipping in to help it happen, even though we have plenty on our side to do, as well.  And then you throw in the drama of one of your underlings blaming you for a mistake she made and referring to you as a “dumbass” to the boss…

Anywho… I’ve been “on” and working hard for a full work week, and feeling like I need a break.  Again, like our kiddos, trying to adjust to a change in my schedule, managing my emotions while desperately needing some down time.  A good reminder how tough it can be for our children on the spectrum.

Snow Day

We’re having a snow day here in the south.  The bread has been cleared from all of the Walmart shelves, and now we hunker down in our houses for 48-72 hours and wait for it to warm up enough to melt any snow accumulation we may get because of the fabulous lack of snow plows or road salt.  It will be in the 60s this weekend, so we shouldn’t have to wait too long.

So far this year, we have had several 2 hour delays at The Boy’s school, which is disruption enough, but today is our first actually snow day, and even my office is closed.  The snow is not anticipated to really start until this afternoon, but it is raining and cold, so why not?

We are desperately hoping we don’t have a power outage, but getting things ready, just in case – gathering reading material, charging up what can be charged, and locating candles in our recently re-packed Christmas bins.

This has been a winter to remember, and it is only January.  I can only imagine all the kiddos on the spectrum in the northern states who have had very little routine in the past couple of months.  The Boy was so ready to go back to school after Christmas, and has yet to have had a completely full week of school, and I know conditions are much worse in other parts of the country.

I let him sleep in a bit today, but we will be reading his novel, something he will probably consider homework, which is just NOT DONE on a snow day.  But it needs to get done, and so read we shall.  For now, we are playing with our new Chromecast (a Christmas present to myself).

Considering 140 million people in our country are under some sort of winter weather advisory, here’s hoping you are managing, wherever you are.

snow day at our house

snow day at our house

The Man, a Cargo Van, and IKEA

The Man and I are traveling this week.  Just an overnighter to help a friend’s daughter move from her parents’ house to a deluxe apartment in the sky in a big city about six hours away from us.  We’ll be traveling by cargo van, and staying in a moderately priced hotel, with a quick trip to IKEA the following morning, and hopefully returning home with a new couch.

I know, luxurious, right?

It’s no honeymoon, but I know we’ll still have a good time.  We like spending time together, even while working or doing menial tasks, and he actually loves to drive.  I can’t wait to hit IKEA, one of the things I miss most about living up north.  When the closest one is six hours away, you appreciate it so much more.

Ikea_logo.svg

And I can’t wait to have a couch!  We’ve been sitting in chairs every evening, and even though The Man loves his recliner, I’m ready to relax, and stretch out.

We’ll mix a little work with a little fun, and my parents will stay with The Boy – a little changeup to our routine.  Enough to make it interesting, but not too much to throw us off.  This is the life.  🙂

Nothing’s Impossible

The Single Mothers who have Children with Autism facebook page recently posted a reminder that taking a break from your routine and taking care of yourself is important.  Yet many commenters responded bitterly that it just wasn’t possible, and people who say that mean well, but that’s the last thing single moms need to hear.

I disagree.

Nothing's Impossible

Nothing’s Impossible

People, if something isn’t going right in your life, you have to make the change happen.  Do you think a respite fairy is going to land on your head and grant you three Friday evenings to yourself?  I have no nuclear family in the area, yet I am able to take an evening off every once in awhile.  Granted, I make a decent wage, and I get that it can be extremely hard financially – money was extremely tight after my divorce, because I was digging myself out of debt.  I know that feeling.  But there are ways, and you have to find them!  Insisting that it’s impossible and defeating yourself before you even start will turn you bitter, and as a result, everyone around you, including your children will suffer.  I know people like this.  Their negativity is like a virus.  And when they don’t take time for themselves, they are more apt to run out of patience and snap at their kids, become exhausted and ill, and it spirals downward from there.

Some ideas:

  • A break from routine is not necessarily a break from your child(ren).  I know routines are the safety zone for kids with autism, but I have written before about how amazing it was to stop and get myself a sweet tea after a meltdown-y morning – it was FANTASTIC, and it had a lasting effect.  Something small like that is a great way to start treating yourself kindly.  Lord knows our kids won’t always show us the same kindness!
  • I am lucky that my child enjoys latchkey – it is relatively inexpensive through the school, and gives me a much needed break from ALL kids after work, because he doesn’t like to be picked up until 5pm.  I don’t pay any extra for keeping him there until 5pm, and it is an excellent opportunity to unwind a bit before the evening routine begins.
  • Groups like The ARC often have respite grants for members, and membership dues are often inexpensive or even free.  This is a GREAT resource that is oftentimes underutilized, which means you have a great chance of getting some money to help defray the cost of even a family member providing some babysitting for you.
  • Have a friend with a special needs child?  Share the babysitting costs, OR offer to watch the kids for an hour, if she’ll take them next time.
  • Feel like your calendar is too full to take a moment for yourself?  Pencil yourself in.  You need to be a priority in your own life.  There’s no excuse for that.
  • Can’t find quality help?  Ask at your school – sometimes the parapros (or aides) need some extra cash, and already have a relationship with your child.  Maybe your local high school has some National Honor Society students interested in becoming special education teachers (and they probably need service hours and would do it for free).
  • Sometimes just having an extra pair of eyes in the house while you do chores (or sleep!) can be a weight off your shoulders.  Again – get a high school student to come in and be your eyes and ears (or entertainment for the kiddos) while you get stuff done.  The more time they spend with your kids, the more they will learn about what to do – special needs babysitters in training!
  • Bartering is getting big.  Is there something you could do for someone in return for them watching your kiddos for a bit?  Bake some banana bread?  Fix a networking glitch?  Give someone swimming lessons?

If none of these ideas will work for you, I feel for you.  I completely understand that some children’s needs are severe, meaning breaks a just going to be harder to come by.  But you can’t stop trying.  You have to find a way.  We special needs parents are in extreme danger of burnout and battle fatigue, and the very reasons many moms and dads say they “just can’t take a break” are the same exact reasons they must.  Our children need us at our best, so we can handle the worst for a long time to come.