Saturday, April 09, 2016

What day is it? Where am I? What's Going On?

Oh, right, Spring. It's here. Kind of. And Joey's birthday is upon us- he is so excited, he couldn't focus in school at all or get anything done. Besides- spring! Time to go ALL OUT NUTSO-BONKO!!!

Sensory processing issues are part and parcel with autism. Since autism is neurological and pervasive, Joey's whole experience is affected, and his nervous system interprets and deals with sensory data as differently as all the other data he gets. We spend a lot of time figuring out what his sensory needs are, how he is seeing the world around him, and what strategies and interventions will help him cope and function in the world.

One of the reasons we spend so much time on this is because it isn't constant. Every spring, everything shifts and changes. Things that bother him now will suddenly be fine. Situations he could tolerate at Christmas now become overwhelming and impossible. He does this again in the fall. The season change and shift, the transition between extremes of weather and temperature, throw him into a tizzy, and his body shifts and changes with it.

This annoys people who don't know much about sensory integration and why it can be a problem. They treat it like a bee allergy, where once you react, you always react. This month he may be sound-sensitive; in six months, that may shift around and have him not be able to process sound (resulting in not being able to understand people talking to him) or to an over-tolerance (so that he will actually seek loud sounds, and his own voice volume goes up). Certain textures will swing wildly from tolerable to intolerable to craved. There is no way to know what will shift, what it will shift to; old problems re-emerge and newer issues fade or dramatically worsen.

He can't tell, either. If you thing it is confusing and frustrating for us, it is tenfold for him. Things he enjoyed doing are now too noisy, too bright, nor not enough. This means his own strategies no longer work, and he has to go back to square one, just as we do. He has to re-think it all out all over again, while being uncomfortable and even scared. Not fun.

The excitement of upcoming birthday gets tossed into the spring mix, along with the looming summer schedule changes. Anxiety everywhere! I wish there was a way to predict which way the sensitivities will swing, so we can prepare, so we can help him prepare, so we can get out the right tools for coping with the changes.

Right now, I'm just doing what I can- making sure my sensory bag is stocked, checking up on the paint and playdough supplies, getting ready to get the back yard in order so he has space to run and jump and think. Oh, and shhhhh... birthday surprise... buying him a new bike...

Wednesday, April 06, 2016

Autism Month, Day 6


It creeps up on you and seeps into your fiber, as you rush about to therapies, meetings, schools, jobs. You hardly have time for the phone calls you need to make for doctors, appointments, counselors, more therapists, more schools, more meetings, there is little time for calling a friend.

When Joey was little, I worried about meltdowns, overload, and unexpected behavior. We went out, anyway, because I could always bring my Mary Poppins unending bag with us, prepare, and hey, I could always pick him up and take him to the car. I'll never forget the first time we used our handicap parking placard- we had been nervous about getting it- and discovered that it made our lives safer and easier. We could at least expose him to a variety of places and activities, even if we had to leave suddenly and quickly.

He's bigger now. He lasts longer, but when he's done, he's done. He's too big to pick up and save. If he melts down on the boardwalk, I'm in trouble, he's in trouble. When they are little, people shrug and smile and frown and whatever. When they are big, they can be perceived as a threat. I have to pick up on the warning signs before he gets to the screaming stage, or it can be dangerous for everyone. That means I have to pay even more attention than before. I can't make a mistake.

This means less going out- it takes a lot more planning to go, a lot more energy. Fewer people are tolerant, and far fewer accepting and helpful. Less going out means seeing less people. Going out with fewer friends. Less and less playdates. And when you do go out, less conversation. When you talk less, fewer people want to hang out with you and your family.

With special needs parenting, you find yourself more often in crisis mode. All those phone calls aren't being made for fun, you know. Hitting puberty means more danger of depression, anxiety, frustration, angst. Add the anxiety, depression, and frustration of autism on top of that, and you have emotional nitro glycerin. You work to keep your kid safe, engaged, moving forward; this can take an enormous amount of energy with a non-disabled teenager. As we run about trying to find a new school for Joey, the anxiety for his future mounts, adding to the stew.

When in crisis mode, very often the checking on friends falls to the wayside. You want to be a good friend, and if they fall into crisis, you would totally be there. But right now, unless they are in crisis, your energy has to be focused on your own page-turning chapter. You might have a time for a quick check- you thank the stars for Facebook- but unless they can say "hi!" in about three minutes, you have to make do with the info you have. Yes, I've heard that you make time for what's important to you, but in crisis mode, your kid is what is important to you. His future. His life.

You might think you know where this is going, but I'm going to turn right here at Albuquerque, and give a shout out to my friend, Sue.

You see, here in the middle of crisis mode isolation, I get reminded that you make time for what's important, and that's a reminder that my phone isn't exactly ringing off the hook with people looking for me, or wondering where I am, or what the heck is going on. I put up Facebook posts, and assume everybody else must be in crisis mode, too, and that will have to do. Quite a few people are- when you are in the special needs community, you know a lot more families stuck in that same crisis mode you are.

But there is only one who has actually called, and regularly pokes me with a "you OK over there, woman?"

That would be Sue.

We were roommates in college. I have no clue how she survived that. I am the WORST ROOMMATE EVER, especially when you are clean, organized, get-it-done woman like Sue. Even more astonishing, she has stuck to me through thick, thin, stormy weather, and all the colors of the rainbow. Holy Hannah, the effort that woman has put into staying friends with me! She calls. She shows up in DC and makes sure I know, so I can get together and see her. Even in the face of months of unreturned poking and prodding and calling and everything, she sticks with me. If I called her tonight and said, help! You know what?

She'd help.

A shout out to good friends, through years and ages, and hoping she knows if she finds herself in crisis mode, that's why they invented cell phones... so you can call at any time, day or night. And they invented planes, too, in case I need to get there. I know she'd do the same for me... because she does.

Thank you, Sue.

Monday, April 04, 2016

Autism Month, Day 4

The alarm goes off. My mind swims back to consciousness, prodded by the chimes of my cellphone and the soft nudge of a cat. She wants breakfast. I want more sleep. I've been having issues with that, trying to sleep and being awakened, or simply worrying myself for hours. I need to start a new story, so I can make up some characters and let my brain whirr on that instead of the fifty things I need to try to do tomorrow; I'd get to sleep faster. Allan has already left for work, so the bathroom is free. I stumble in that direction.

Sometimes Joey is already up, playing a game or chasing cats. Sometimes he comes in and slips into Allan's spot, cuddling (and sometimes also playing a game), getting in some mom snuggles. Today, he is rolled up like a boy burrito in his blankets in his own bed. Andy is up, on his iPad, petting a cat.

"Rise and shine, Buddy!" I call as I head down the stairs. There is lunch to be made, cats to feed, pills to prep, breakfast to put together. Sometimes I let Joey make his own lunch, but it makes him grumpy. With the late sleep, another possible red flag, I start on it myself. A sandwich, an apple, some crackers he may or may not eat; sometimes they are fine, sometimes he puts them on his "junk food" list in his head, and won't touch them. I think of the wonderful, creative lunches I've seen online. I bought some containers to make some, but I've never done it.

Joey appears in his favorite shirt, and I hand him pills and breakfast. We keep trying to find something to reel in the anxiety, but this combo is the only thing that both takes the edge off while not having him go nuts or feel weird. I am not looking forward to the day his body compensates and makes it useless. I push aside the pang of futility and go through his notebook, looking for forms I need to sign and return.

"STOP TAKING MY HAND!" Joey yells, and I jump. What?

He's staring at me, and my brain is racing. What is it? I'm not near him. His hands are empty.

"STOP TAKING MY HAND!" he yells louder, and then laughs. "LET GO OF ME!" He picks up a stick- a walking-stick or cane size, not his usual writing size- and heads to the back yard. I finish the lunch, put the bag together with a supply of chewing gum, and my next alarm goes off- time to remind Joey to put on shoes and make sure he is ready for the car to come. He tromps back in just as I reach my phone to turn it off.

"THE GARBAGE WILL DO!" he shouts, grabbing his backpack, and giggling mightily.

Oh, Right. Star Wars. It's going to be a yell-the-script kind of day.

As he slips into the back seat and buckles in, I silently wish the school folks good luck. It's going to be loud. Very loud.

May the Force be with him.

Sunday, April 03, 2016

On the Third Day Of April

Joey's baseball season has begun! Joey plays for the Challenger's League, through Little League. He loves to play, though the spring season is often hard for us by the end- the heat cranks up, and Joey doesn't do heat. Perfectionism is a problem, too- although everybody gets to hit, run, and score, he know the real rules of baseball. He gets upset when he swings and misses. As the season progresses, so will he; but the first game can be tough. It's a transition, like any other.

He's been gearing up this year, though. Around Christmas, all the lessons of the nutritionist sunk in and clicked, and he's been working on his weight and strength, eating better and going out to play more. He's lost nearly 30 pounds- which is even more amazing, as he has gained about 3 inches in height at the same time. If I could get him to practice, he'd knock the leather off the ball.

So it is time to pull out our baseball scripts, find a good place to keep our uniform, and get ready for some fun Saturday games. We are Marlins again this year, so it should be awesome!