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I Expect It PDF Print E-mail
Written by Gayle Nobel   
Wednesday, 03 October 2012 15:14

I've been convinced to do another blog-a-thon! Here goes Day #3.

Kyle  went back to horseback riding for the second time last night. The first time was not a fluke and he did equally as well, if not better, the second week. We got there early. (Yeah, us). He was so calm and quiet while we sat in the waiting area of the patio for a full fifteen minutes. This was in stark contrast to his high level of activity at home.

Once again, the mount was quick, smooth, and flawless. Again, Kyle was happy and comfortable and even  well balanced on the horse. The ride went very well. Leslie added some extra challenges to his ride and he responded nicely by making small attempts at pulling back on the reins when requested to stop the horse. Next week I will bring a camera that can take good night shots. The sight of Kyle on that tall white (former) show horse is something else.

I assumed this ride would go well since the first one did. But you never know. That first ride could have been a fluke though I didn't really think so. It seems it was just setting Kyle's new norm for horseback riding. Given Kyle's struggles of the last riding season and in his life in general until last April, this success is extremely sweet.

I was talking to Leslie  again about the mount and how I was a little surprised the first week how easy it seemed for Kyle and how smoothly it went. She looked at me and said, "I expect it."

"I expect it!" Aren't those powerful words when it comes to our interactions with our kids? Sometimes that's hard when they have a history or pattern of doing something one way and/or of having difficulty with something. We all want to think positive. Postitive expectations are very, very powerful. But it's not always easy to have them when you are with a person for a long time. It's easy to fall in the pattern of guarding or lowering your expectations for fear of disappointment.

The key and challenge is to have expectations but not to be too rigid or attached. Expectations are an attitude. We can be expecting Kyle to have difficulty mounting and have ourselves braced for that OR we can expect Kyle to mount smoothly and be braced for that. If he needs extra support, we switch gears and go with what's needed.

Is it possible to have expectations and not be disappointed if things go differently? Ah, something to look at and work toward on this journey. But in the meantime, a little disappointment is not fatal (unless of course, you expected your parachute to open while base jumping, and it didn't.)

When Leslie said "I expect it" what I heard was "I believe in him".  Powerful stuff.


“If you expect nothing, you can never be disappointed.
Apart from a few starry-eyed poets or monks living on a mountaintop somewhere, however, we all have expectations. We not only have them, we need them. They fuel our dreams, our hopes, and our lives like some super-caffeinated energy drink.”

~~Tonya Hurley, Author

Last Updated on Wednesday, 03 October 2012 22:14
Discombobulation PDF Print E-mail
Written by Gayle Nobel   
Tuesday, 02 October 2012 20:19

Yesterday was the first day I felt ready to hike after being sick for a few days. In fact, I was more than ready, I was itching. Yup, I get itchy in that way... crazy, huh? The morning was taken up waiting for and then waiting around while my new induction stovetop was being installed. It followed the rule of any home project in that it always takes longer and is more complicated than you think it will be. Fortunately, an installer,  not my husband, was doing the work and he had the pleasure of cutting my countertop to make it fit.

I was writing and being busy and watching the thermometer on my clock steadily rise. By the time he left, it was well into the 90's.. okay, almost 100. Too hot to hike. More busy stuff and as it got later and later, I got itchier and itchier, so I decided to go anyway. It was around 104 degrees at the top but I didn't care- it felt good to sweat. As I was about to take a few moments to look around and smell the roses, or rather, the dry desert with no foliage, I was stung by a bee!

Surprise! In all my years on this planet, I have not been stung. My husband is highly allergic to bee stings. Before we were married, I watched him pass out after being stung by a wasp. Full blown anaphylaxis. A few years ago, Kyle was stung in the pool and a lump developed that did not go away for a long time. The doctor suspected an allergy so we carry an epipen and benydral when we are out. But me? I had no idea if I was allergic.

I headed home as quickly as I could. Somehow during the journey down the mountain,  I managed to create a full blown panic about whether or not I was allergic to bee stings. There was nobody out on the mountain if I got into trouble. I went through all kinds of scary scenarios in my mind and my fitness heart rate monitor was measuring anxiety. Yup, my heart rate was elevated to climbing up BPM when I was walking down. Was the icky feeling part of just being overheated or was I getting ready to have a reaction?

No reaction, I was ok. Just before I got back to the house, I looked at my phone and there was a big yellow triangle with an exclamation point that said extreme heat warning. I slid it to the ready to go position and was immediately on the dial pad screen which read "call for help". Isn't that ironic? My phone got panicky too. Fortunately, I was outside my front door and did not need help. Apparently, wearing my phone on my arm caused it to get very very hot and my electronic mommy assumed I was probably overheated and in trouble. The IPhone is a pretty smart gal.

I rushed in the door, frazzled and overheated and wondering if I still might have a reaction. After some long drinks and sitting down and assessing the bee sting, I realized I was indeed, going to live. Time to figure out dinner. Uh oh, I had no idea how to operate the new cooktop. I actually had to get out the instruction manual to turn on my stove.

By the time I was in a position to fix dinner, I was flustered, unorganized and a bit overwhelmed. I had trouble slipping into my usual dinner prep routine.

And the point is?

Later on, I got to thinking about Kyle and wondering if this is what a lot of his world feels like to him. Do most things seem to happen randomly? Even though I tell him where we are going and what we are going to do, do my words get fully processed? If it's something new or unfamiliar and he has limited or no past experiences to form a visual picture, then what? Do the "What's Next?" photographs we use get interpreted correctly or is much of life a confusing surprise? I have no idea.

For people with autism, routines are especially important. For all of us, routines are important but we do not cling to them because we are usually able to deal with uncertainty and switch gears when necessary. I certainly switched gears in my kitchen, post overheat, post bee sting, post how does this stove work. I was a bit discombobulated but it did not throw me over the edge.

Is discombobulated Kyle's norm? Is it often extreme to the point of throwing him over his edge? Does the world seem to happen suddenly and randomly, just like my bee sting? Some of his behavior makes a lot more sense when viewed through this lens.

Hmmm. I wonder.

Last Updated on Wednesday, 03 October 2012 03:36
One Door Closes, Another One Opens PDF Print E-mail
Written by Gayle Nobel   
Monday, 01 October 2012 09:33

It's October 1st and I'm considering some sort of challenge for myself this month. Maybe a blog-a-thon? If I get enough requests, just maybe.

October also means horse back riding has just begun again for Kyle. He has been riding for nearly sixteen years. The start of this ride year has brought some big changes.

About two years ago, there was a big change for Kyle at Horses Help, the theraputic riding center where he has always ridden. An instructor who had worked with him for a long time and one of her long time side walkers, left rather suddenly.

It was very disappointing at the time. Leslie had been doing a wonderful job with Kyle and really understood him after so many years together. Clint, his side walker, had a very special connection with Kyle and really knew how to work with him and challenge him. Leslie and Clint were a very strong team. Their departure was a big loss.

I was sad to see them go. I accepted the situation as best I could. Such is life. For different reasons, we have lost good people in Kyle's life many times.

The next two years were tumultuous for Kyle. He had two different riding instructors at Horses Help on the two nights he rode. Many of the side walkers were young and inexperienced. Teens often volunteer at Horses Help and sometimes he would have a young teenage girl as a side walker. In many ways, it was as if he was starting over.

In addition, he was having cycles and often had to miss 1/3-1/2 of the scheduled rides for the month. And then there was "the fall". One night, Kyle fell off the horse. This was due to the horse tripping and staff tripping but also due to the inattentiveness of staff. Fortunately, he was not hurt. In his fifteen years of riding, he had never come close to falling off the horse. Tammy was taking pictures at the time and was snapping just before the fall so to some degree, we were able to analyze what happened with the director.

Kyle was not hurt but he was definitely shaken. This was another setback and he had a lot of trepidation about mounting the horse after the fall. In fact, there were a few nights where he couldn't mount at all and we had to go home. After the fall, he was switched to a different, less responsive horse who was shorter and even more difficult for Kyle to mount from the platform. On the positive side, everyone was much more alert and they found a male side walker for both ride nights. By the end of the season in May, Kyle had gradually become more comfortable and things had improved.

I stayed in touch with Leslie, the instructor, who had left. She assured me she was looking to start up her own place someday. Sometimes people have good intentions but things just don't work out. I was pleasantly surprised when I was contacted a few months ago and she told me she had a place and was ready to start. Were we interested?

Absolutely! This was a dream come true. And Clint was coming back as Kyle's side walker. Whoo hoo! AND, they had the perfect horse for Kyle's size. A seventeen hand beautiful white horse named Monte.

The plan was for Kyle to ride once a week at the new place, Dusty's Boots, and ride once a week at Horses Help, the old place. This way,  he could get his two rides in each week. We scheduled a few weeks of visits to the new property so Kyle could get used to things and feel comfortable there by the day of the first ride.

Shortly before we were to go to Dusty's Boots for our first get acquainted visit, I received an email from Horses Help informing me that they did not have a horse to accommodate Kyle. After nearly sixteen years at Horses Help, I was informed in a business like email, he would not be able to ride. There may be a horse for him a few months down the road, but they weren't sure when or even if.

Talk about one door opening when another one closes! It was exactly two hours prior to our first visit at Dusty's Boots, that I sat, stunned, reading the email. I would like to think there are no politics involved since they knew Kyle would be riding at Dusty's Boots, but who knows?

The most important thing is that Kyle can still do one of his great loves: horseback riding. AND, now he gets to have Clint as his side walker again and Leslie as his instructor. It doesn't get much better.

Last Tuesday was his first ride. I wasn't sure how things would go with the mount, or the ride. Mounting had been very difficult at Horses Help and he had not ridden since May (too hot in the summer). Clint walked him over to the mounting platform and I stayed in the waiting area....holding my breath, just a little.

The mount was smooth and flawless. Kyle did not hesitate. Under Leslie's attentive and expert guidance, he and Clint began right where they left off two years ago. The connection was still there, Clint knew just how to support Kyle while mounting, and Monte seemed to be the perfect height for Kyle. Everything fell right into place. Just like things used to be.

Kyle rode off into the night on his white horse. He was accompanied by an all male team. No teenage girls for this big horse and big man. He was comfortable and relaxed and happy. I had not seen him this relaxed since before the fall or maybe even longer than that. He even got to trot a few paces. If a heart could smile, I'd say mine definitely was.

I confess to feeling hurt when I received the email from Horses Help. A phone call from the owner would have been appreciated. On the flip side, Leslie has gone out of her way for Kyle. Monte, his horse, lives down the street from Dusty's Boots. Leslie has arranged for his owner to bring him down JUST for Kyle each Tuesday evening. My heart is definitely smiling.

A door has closed. Another one is wide open. Such is life.

Last Updated on Monday, 01 October 2012 17:05
Excellence Lives in the Details PDF Print E-mail
Written by Gayle Nobel   
Friday, 14 September 2012 18:13

Yesterday, Kyle had to repeat some lab work. As a new patient to the family practice, he had previously been there only one time to meet his doctor. That initial visit included a blood draw.

Fortunately, Kyle has always been very good about the actual blood draw. He allows us to squeeze and stabilize his arm and is very still, and even quiet, while the needle goes in. As long as there is not a lot of fumbling for a vein, it is a quick and smooth process.

The difficulty usually comes in the beginning. Kyle's biggest challenge is the motor planning required to sit in an unfamiliar shaped chair with awkward, funny arm rests. These chairs are often taller than typical chairs. All of these nuances create an obstacle for Kyle which adds stress and leads to uncertainty and resistance.

Difficulty with motor planning, or its more official name, apraxia, presents a huge obstacle in Kyle's life. Autism often comes with add-ons and they can be as significant as the autism itself.

The first time we had his blood drawn there, two wonderful ladies were very kind and patient while Kyle struggled to sit in the chair. There were three chair options and after trying the two that were the most challenging, I deemed the best chance of success to be a chair which was not in a good position in the room for the blood draw. The women were very accommodating and moved the chair to the middle of the room and with all of our perseverance, we made it work. But it definitely took some trial and error, extra time, and lots of patience from all of us.

This time, the lady (I MUST find out her name) apparently remembered Kyle and had the easier chair all set up for him before we entered the room. The perfect chair was set at the perfect angle inviting Kyle to sit down. She welcomed Kyle into the lab and was ready and waiting with lots of encouragement and a smile.

There was a little bit of hesitation, but Kyle was able to get seated fairly easily and quickly. The rest went very smoothly and we were in and out of there in a very short amount of time. After it was over, Kyle just wanted to sit in that chair for awhile. I think he was surprised that we were actually finished so quickly. Pleasantly surprised, I'm sure.

I was very, very touched by the thoughtfulness of this woman regarding the chair. It was a mindful adjustment of a seemingly small detail but it made a world of difference for Kyle. It reduced a large piece of the stress for him and frustration for all of us.

The fact that she remembered Kyle in a busy lab and made the extra effort to make this adjustment, was HUGE. Looking deeper, I realize she got it! Whoo hoo!! Kyle got a break. A thoughtful, caring attitude with an action to back it up went a long way yesterday morning. Honestly, it made my day.

Action speaks louder than words or intention. Excellence truly lives in the details.

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