Friday, May 20, 2016

Between Waking and Sleeping

Sitting in the glow, of the laptop, I spent a moment listening. The fan in the guest room needs some WD-40. The cat is snoring. Allan's sleep machine is in a steady breath rhythm.

Joey is having some trouble. Congestion. Sometimes he wakes up with a cough, and I listen. I have him set up in the recliner, so he'll be sitting up- easier to breathe. He swallows, semi-chokes on the congestion in his sinuses in his sleep. I listen. A little cough, but no bark. The breathing is thick, but consistent. I'd go to sleep, but I listen instead.

We went to see the doctor earlier. He was scratched by the cat, and it got infected despite our cream regimen. The doctor suspects cat scratch fever, but we'd have to do a test for confirmation. The treatment would be the same, so no point. He has his antibiotic. Since the scratch is on his face, I worry- the nearest lymph nodes are the neck ones, I think. I listen.

A little choke, but he recovers. I doubt he'll be going to school tomorrow. He can't be getting much decent sleep. I don't know if the congestion is part of the infection, or just an opportunistic something else. It's almost 4 am, and I have things to do tomorrow. I need some sleep. Instead, I listen.

Caught between the quiet waking and the quiet of sleeping, I listen to my baby, making sure he is safe. It's what moms do, isn't it?

Tuesday, May 10, 2016

Happy Blogiversary to me...

Oops. Missed it by three minutes.

Well, that was fun. Carry on.

Sunday, May 01, 2016

Where Awareness and Acceptance End- Inclusion Illusion

I was reading an article today, and nerves sang. The article was "Let's Be Blunt: The Illusion of Inclusion." The message was one we face: kids with special needs not only don't count, but are openly despised by the general population.

The truth of inclusion is that it doesn't really exist- and hence it didn't work for us. Joey is in a special school- and we wait to find out if he is going to be wait listed for the only high school program that can accommodate him next year that we know of (and what happens if he is wait-listed? Where will he go? How will he get an education, and access his RIGHTS?)

Even the "inclusion classroom"- which is really a special-needs classroom where kids just require less support or can be pulled out of the classroom for services they need- didn't work for Andy, and we had to pull him from school altogether. The attitude of "you are taking resources from NORMAL kids!" is so prevalent and ingrained, we don't do any real inclusion. My kid is seen as a project, a nuisance, a threat, a drain, an "inspiration", an idiot, a distraction... instead of as a member of the community, a child, a human being.

That ingraining comes out in so many ways, from so many directions. People think nothing of insulting your kid casually, and then getting mad at you when you try to make it stop. They tell you to leave spaces because they think you have no right to be there, to exist as you are. They judge you, often openly and loudly, in public places. That people think this is OK is just insane. Cruel. Heartless.

I will never forget sitting in the rows of parents at the spelling bee. Third grade. Joey introduced himself with his typical flamboyance and joy. They laughed; not with him, but clearly and explicitly at him. The attitude was clear, and voiced in plain English: oh how cute, they let a retarded kid up there. Isn't that sweet. Poor kid, making a fool of himself, why do they do that? The assumption of his intelligence- that he lacked it and didn't really deserve to be on that stage- so clear. They didn't notice me there, saying nothing. I'm a big lady, but this isn't unusual. I am often the Invisible Person. I assume these other people knew each other, and they certainly did not know who I was. I assume they weren't deliberately cruel and mean.

By the end of the bee, they were out of their chairs, cheering for him. If the last round of a spelling bee worked like all the other rounds, he would have won- but you have to spell an extra word. And when he missed it, he got flustered and decided to bow out. He deliberately mis-spelled the next word, when the other two contestants were brought back, even though they had mis-spelled their words and he had spelled his correctly in the next-to-last round. Changing the rules confused him, made him frustrated and angry, and he was done. He bowed out. But he had shown those idiots in the crowd that their assumptions about the special needs kid not deserving to be on that stage were totally wrong.

They knew he had won that spelling bee.

I often wonder if they took the lesson to heart, or if our society is so ingrained with discrimination against those with differences, those who require different things from society, that they just went back to those comfortable old assumptions. The ones supported by society, by media, by comedians, by schools, by legislators, by businesses, by politicians, even by the medical establishment(and these links are just examples or information I could dig up on the fly). Did they imagine him as an inspiration porn meme, or did they actually go out and change their attitude? Will they now really include him, and people like him, or did we just make it worse- spread the stigma by counter-example?

Joey is a human being. Andy is a human being. Guess what? So am I. So are you. Let's all start acting like it. We are all in this together, and none of us make it out alive. Treat others as you would wish to be treated, no exceptions. Why is this acceptance thing so hard for everybody? Would you want to be the kid that gets laughed at, left out, segregated, and left behind to rot? Can't we even be inclusive of ourselves?



Friday, April 15, 2016

The Good with the Bad

Most days with Joey are good days. He's happy. He feels safe at school. He likes to learn new things, and show off what he knows and can do (just ask him a math question...) He's discovered imagination and Star Wars and healthy eating. Let him script and do his thing, and he will skip through the day being Awesome and trying to bring you along in the Awesome. If feeling slightly off, he may script more, or turn to his favorite video game (which currently involves making cupcakes).

Then there are the bad days. Usually he's not feeling well- it can be hard to know when Joey is sick, or tired, or just grumpy, because he's working so hard to be happy and to please everybody and be perfect. When this fails in his own eyes, the spiral begins. He thought he was playing, and you mistook his action for something aggressive or inappropriate. He accidentally knocks something over or spills his water. He stubs a toe. He gets something wrong on an assignment. These little things become a straw upon the camel's back, and once it breaks, we have a Bad Day.

Joey has a lot of difficulty recovering from a Bad Day. He can't just let it go, calm down, or start over. He can't shrug it off and turn it around on his own. He needs help. Sometimes he just needs a nudge in the right direction in the right way. Sometimes he needs a lot of support and patience. Sadly, there is little knowing which it will be right this minute in the Bad Day, and if the spiral continues, we are headed for meltdown. It builds. The steam doesn't really release; those early signs of spiral are just more pressure. He knows this isn't going well. He doesn't know how to change it. He can't stop the spiral, either. The frustration of continuing to "do it wrong" bursts out as self-deprecation. Too often, this has turned out badly, very, very badly, and so he has now cut to the chase and started in himself, knowing from experience that this is a Bad Day, and there is nothing he can do about it now.

In the regular school, Bad Day meant write-ups, suspensions, punishments. Even if he was allowed to recover, after about 20 minutes- when he was outwardly looking better- he would be sent back into the frying pan; no one understood he needed much more time, that this was more like a seismic affair, complete with growing quakes and aftershocks. The blow-up is the center of the event, not the beginning- or the end.

Joey has internalized this criminalization of being overwhelmed, of being unable to recover without help, of spiraling without brakes. The frustration of it makes him more aggressive, in trying to get out the fear, the frustration, the explosive energy of the anxiety of I Did Something Wrong and Now They Will Hate Me. That aggression can turn into flight. Without flight, it becomes fight. Will be bite his arm? throw something? posture aggressively towards another person? There is no way to know how that fight will play out.

On those Good Days... the majority of days, when things are quiet, and Joey is humming along doing his thing and being himself and starting to store up those little irritations and straws up on his back... those days, he can do anything. He could move mountains and conquer the world. A flash of that grin and a high five and he melts all hearts.

It's on the Bad Days that he needs the support, the help, the extra time and patience. It is on these days that often Joey, and many like him, get exactly the opposite. Instead of understanding that this is just part of Joey (everybody has bad days, after all- you don't stop being their friend just because they are having a bad day, right?), he's treated as a broken thing. A you-aren't-Joey-today-what's-the-matter-with-you monster, instead of a kid having a bad day. If you were having a bad day, wouldn't you want your friends to cheer you up, maybe pop in your favorite movie, bring you some flowers or something? You certainly wouldn't want them to scream at you, tell you to leave, turn you away, or punish you. If that became the regular response to you having a bad day, you might start being self-deprecating, too. That's what happens to people who are emotionally abused, day in, day out, even by people who have no clue what they are doing or that they are doing it.

Recovering from this kind of grueling abuse is a long road, even when the exposure wasn't long at all- it doesn't take much to grind a child down. Several years of school is not a short time, and we are just beginning our road. I am grateful for his school, where people are understanding Joey and trying their best to help him, instead of just punishing him for having Bad Days- even a spate of them. This understanding and effort is the first step in teaching Joey how to cope with Bad Days, how to build a toolkit to respond to (and even prevent) getting overwhelmed, and giving him some brakes for the spiral. Without this first step, there is no way for him to understand, because he reads loud and clear that he is, as a person, Bad, since you are refusing to help him and are punishing him for being himself, and trying his best. When a child does their very best, and it isn't enough, you don't slap them.

You help them.

That is how they learn to be independent and confident in their growing skills.

Sunday, April 10, 2016

Birthday Boy

Fourteen. Really. 


Yes, I got him a bike horn. It's like I'm new here. 

Happy Birthday, Joey!

He's fourteen now, people. 
Where did the time go? 





























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

Isolation.

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.