Wisdom

Sometimes I forget that there is a real, live person inside my son. That probably sounds impossible (or at the very least, strange for a mother to admit), but the truth is that I can get so caught up in helping him learn and develop so he can be independent some day, I forget that there is a personality in that body that is just him. It's something that cannot and will not be altered, and every time it makes an appearance, I'm beyond thankful that it refuses to be silenced.

Today he asked me what his sister and I did today.
Ian- "But what did you do?"
Me- "Nothing. She was sick, so we did nothing. Really, I did nothing."
Ian- "It's impossible to do nothing, Mom."
Me (thinking)- "Okay, well, I did stuff like laundry, but it felt like I did nothing."
Ian- "If you can't actually do nothing, that means that you are always doing something. So, if you're always doing something, why not make sure that something is important? Actually, everything you do means something, Mom, so don't say you did nothing. That isn't true."

Unfamiliar Territory

Yesterday was not a great day.

When I went to pick Ian up from school to take him to his GI appointment, I was told that his violin teacher had been in a severe car accident. Thankfully one of the teachers who knows Ian well stopped us to give us a bit more information, because she understands that he needs a bit more detail in order to process information, but I could tell from the moment I saw him that his world was in turmoil.

Question after question followed, and his agitation grew each time I failed at answering them. I watched in the rearview mirror as he squirmed in his seat, and I could tell he was trying to control himself even as his tics grew more pronounced and he started ripping at his fingernails. Distraction didn't work (it never does, but I was desperate), and even in the waiting room at the doctor's office, he repeated the same questions and continued asking them through the examination.

You see, Ian needs order. He needs predictability, routine, and a sense of what-comes-next. When something happens to derail that, it's like the one loose thread of his reality is pulled, and it all starts to unravel around him. In this case, when he heard about the teacher whom he adores and respects, he was devastated. As he started to process the information and what her injuries may mean, it occurred to him that there would be no more violin lessons on Fridays. Music classes would be conducted differently and taught by a different teacher, the spring concert may have to be cancelled, and there would be no music presentation this  month. Everything was going to be different, and no matter which way he asked his questions, there were no answers. There are no answers because we just don't know, and he is panic-stricken in a way most people cannot understand.

He was able to come home after his appointment in a relatively controlled state, and he went straight to his guinea pig to hold her. I praised him repeatedly for using a coping strategy, but I could tell he was still struggling. He held Zelda for twenty minutes, and then he asked his sister to watch TV with him while laying on his back. I found this surprising (in a good way), because one of the strategies they use with Nick is to have him lay across Ian's legs and lean against his torso. It has immediate results in Ian's behavior, so I was amazed he recognized that and tried to implement the same sensation the best way he knew how.

However, the night went downhill from there, and it ended with a complete breakdown. One of the very unfortunate aspects of ASDs is the inability to verbalize feelings, and that was our battle last night. I know he was angry, confused, sad, and scared, but without being able to use those words, we couldn't react the way he needed us to at the time he was feeling specific emotions. He can't voice what he feels or what he needs, so as parents, it's all guesswork. We just do the best we can, and when it gets to the point it did last night, we just have to keep him safe. His frustration builds to a point he can't control himself any longer, and we just have to hang on tight and wait it out.

Nick will be trained to Ian's specific triggers, and he will eventually learn his behaviors so episodes like this will be kept to a minimum. He will be able to "sense" Ian's anxiety so that he can act before he gets to such an agitated state, and hopefully by keeping Ian calm, we can start implementing coping tools to get him through whatever stressor we're facing. Unfortunately, we're at a point right now where he can derail too quickly, and sometimes we're forced to just survive moment by moment.

We do have high hopes for the changes Nick will bring to our family, and once again we would like to thank everyone for their support and encouragement. We couldn't do it without all of you!

Do I Have Autism?

It takes me 6 minutes to drive Ian to school, 9 if I happen to hit the red light at the intersection. It's usually a ride filled with a lot of laughter, a lot of talking about the sky, and there is the occasional argument between Ian and his little sister, snappy conversations between Ian and me, or what I like to call 'loud discussions' between the three of us.

Wednesday morning was no different... Until we pulled out onto the main road, that is. Ian was behind me, flipping through some papers, and I heard him muttering something.

"What's that, hon?" I called back to him as I pulled onto the road bordered by orange groves and pointed out the pink in the sky. "I couldn't hear you."

"Do I have ah... ah... um, au...? You know, that word I hear you say sometimes?"

I literally felt the world stop turning for a heartbeat as my stomach dropped. I knew exactly what word he was referring to. "Autism?"

"Yeah," he said quietly. "Do I have autism?"

I looked in the rear view mirror to see his deep brown eyes looking back at me, and I smiled at him. "Yes, you do. We've talked about it before. Do you remember?"

He looked down at the papers he was holding, and I saw it was a special brochure I had picked up at his therapy appointment. It was full of listings for agencies that specialize in working with special needs clients, and I hadn't even gotten a chance to look through it. In fact, I had forgotten it was there.

"Why do you need this? You said that I was just wired differently from other people, but this is a whole book about people that 'help' people with autism. Why do I need help? Is there something wrong with me?"

I had four minutes left until pulling up to the school, and I contemplated just driving past and coming back home so I could talk to him. We have never kept anything a secret, and we are as open and honest as we can be without overwhelming him with information he cannot possibly process. He asks questions and we answer him, but in that moment I wondered if we hadn't done enough to assure him that he is perfect just the way he is.

So, I jumped in with both feet because I didn't have any other choice. "'Help' doesn't mean anything bad. 'Helping' can mean something as simple as showing a friend how to sound out a word they don't know, right? Well, helping someone with autism just means that we have to do things a little differently sometimes. We need to teach you things that every person needs to learn, but you have a different way of learning those things than a lot of other people. You are so amazing, so unique, that people have to take special classes just to learn how to teach you correctly. Isn't that something?"

He was quiet, and I wondered if he could possibly understand what I was trying to say. I have always told him that his 'wiring' is just altered from other peoples' and there is absolutely nothing wrong with that. I have explained to him that some things might be more difficult for him, but that doesn't make him 'strange' or 'wrong,' and I have constantly reminded him that he is never a burden even when we get frustrated with something that's happening (yes, he does sometimes ask us if he's ruined our day, and he frequently apologizes for 'being a jerk' or 'hard to deal with'). I have used the word autism before, but in that moment I wondered if perhaps he didn't really grasp the term and hadn't been able to absorb what we have been telling him all this time.

"So, I have it then? I have Autism."

"Yes, you do, buddy. Do you have any more questions?"

He smiled at me, and shook his head. "Nah. It's okay. I guess I'm pretty special, huh?"

He couldn't possibly know how right he is!!!!

Perception

It's all about perception. When you watch the news or read the paper in the morning, what do you see? Usually it's murder, robbery, people dying... Sure there are good topics thrown in here and there, but on the whole we are privy to the worst aspects of the human race. Sometimes you can't help but feel overwhelmed and hopeless about the world we live in, and that's no surprise considering we get to hear about the worst of the worst.

However, as I am (thankfully) reminded daily, there are wonderful people out there. I look at the donations we're receiving and think back to all the amazing, kind words of support we have gotten, and I'm overwhelmed by the good in people.

Sometimes we forget that there are also wonderful companies that exist, and during a time when you hear about corruption and greed more than you do about support and morality, it's wonderful to hear about a company that's willing to step up and offer help. We were lucky enough to speak to someone from such a company today, and their offer was so genuine, it reminded me that the good is so much more prevalent than the evils we are so used to hearing about.

When I can, I will share the name of this wonderful business, but that won't be until we fine-tune some things. Until then, I hope they know how much we appreciate their support and how thankful we are.

Love,
Our Family

Happy New Year

We tried to distract Ian by taking him to an event at the local zoo when we returned Nick to the family raising him. He did pretty well, but he was definitely affected. It was hard for him to keep on task, and he spoke nonstop through the whole experience. We had hoped he would be exhausted by the time we got home, but unfortunately the nighttime wandering and pacing up and down the stairs started that very night. We were ready for it, but it's still upsetting to watch him struggling to adjust.   

That being said, he's doing pretty well right now, and we're looking forward to a fun few days before school starts again. Happy New Year, and may 2014 bring you abundant blessings!

Love,
Our Family

Safe

Nick was able to spend a few days with our family. As you can imagine, it's been a wonderful visit, and we are all sad that he has to leave in a few short hours.

Nights are not comfortable here. Ian experiences stimuli you and I cannot even imagine, and the evening hours are usually restless ones. He needs constant noise when he's in his bedroom, and he has a minimum of 3 lights on once darkness finds its way into his room. After bedtime is declared, he's up and down the stairs constantly, and he never gets many hours of deep sleep. This results in (as I'm sure you can imagine) a decreased attention span, irritability, and a short temper, and he usually has dark circles under his eyes because he's exhausted. It's frustrating for him and for us, and we struggle constantly with different approaches toward helping him achieve some sort of restful sleep.

Not surprisingly, when Nick is here, Ian sleeps. Nick makes himself comfortable in Ian's bed, and there have been times I've gone into a room devoid of lights and noise to find him stretched out on top of Ian, a great big doggy smile on his face. When Nick is here, Ian never moves when I open his bedroom door, and amazingly I find that I am able to stand in this doorway and watch as his eyelids dance with whatever dreams he's having. I haven't been able to do that since he was a small child, because whenever I'd try to step foot into his room, he'd jump up in a panic and look around wildly. For years I have not been able to watch him sleep and wonder what he was dreaming about, and I had all but forgotten how peaceful he looks when his defenses are down and he feels safe.

Safe. Now, there's a word that we don't use lightly around here. Safe to us means something different than it might to you, because for us, safe means that Ian is having a good day, he's in control, or he's positively adjusting to changes in his treatment regime. Safe implies that our day has gone by without a hospital visit, outburst, or a major disruption to our life. We don't use that word often for fear we might jinx ourselves, but in all honesty, it's one of my favorite words. Ironically, today Ian used the word safe to describe his feelings about Nick, and it made my mommy heart almost weep when he said it. Knowing my son feels safe is so very important to me, because I know that most of the time he's living inside a turbulent world where not a whole heck of a lot makes sense to him.

We were able to bring Nick to Ian's therapy appointment today, and his occupational therapist commented on how his whole demeanor was different. She was absolutely right too, because for the past 3 days, Ian has been relaxed and content. He's slept. He's laughed. He's played with his sister without getting frustrated and losing control. He's been able to be in public without getting overwhelmed. He has experienced life the way I have hoped and prayed he would, and as I write this, all I can think is how amazing this dog is. When I first contacted Kids and Canines to ask for more information, I never ever thought I would be getting the answer we needed to help my son live life rather than just exist in it. I had hoped, of course, but I am still in shock. Every time I see Nick in action, I am moved to tears that this sweet soul has entered our lives, and I am forever grateful for everyone who has helped put him here.

Love,
Our Family

Christmas Greeting

Merry Christmas from our family to yours! We hope you have a safe, joyous holiday filled with love, laughter and light.

Love,
Us