Written by Gayle Nobel
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Friday, 23 March 2012 16:25 |
Jeff Stimpson is a guest blogger on AutismWithAttitude today. Our children with autism challenge us daily. This reminds me that sometimes, well maybe often, you just have to go with the flow and also remember to have a sense of humor.
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At the register, I ask Alex to take stuff from the cart and put it on the belt. "Alex, take out the ham and put it up there for the cashier. The ham, Alex." He then appears to be moving on to the toilet paper and the bag of green peppers; good time for me to manhandle up the carton of Diet Coke. I get the Coke up there and I turn around thinking Alex is still helping take stuff from the cart. Isn't that great! He's learned-"
I spot him vanishing into the LAUNDRY AND HOUSEHOLD aisle. Again.
For months he's darted like a dragonfly into the LAUNDRY AND HOUSEHOLD aisle of supermarkets, drug stores, Target and Wal-mart almost the second after we enter the stores. Invariably he finally stops in front of the rows of fat plastic orange jugs. He pulls one down: sometimes Regular, sometimes Fresh Mountain Scent. Other flavors include Free & Gentle, Touch of Downey, Sport Active Fresh, Actliift (Clean Breeze and Fresh), April Fresh, Bleach Alternative, Fabreze Freshness, Renewing Rain, and Renewing Rain Scent, among others. I'm unsure which Tide Alex favors.
Tide's been ugly. One exhausted night in a grocery store this summer Alex bolted from the register and found the Tide aisle, and when I found him he met my eyes for about a second and then zipped in the opposite direction. I was ... unpleased. One part of me felt I had a right to be mad; another felt I should try harder to understand him.
So again autism makes me ask weird questions. "What do you like about Tide, Alex?" He waps the white plastic cap (Color Safe Whitening ... 26 Loads [Lavadas]). "Wanna Tide!" he says, hugging the jug like he would a teddy bear. Is it a toy or a tool for a future job?
Is this related to Alex bolting into laundromats, which he's been doing for months? Zip and in past the front-loaders and the dryers and the wide-eyed owners. After lassoing Alex in these places, I've tried to make it clear to him that he's too large to run full speed into crowded businesses anymore, that he might plow someone over. That he should walk in. Modify the behavior.
Modify the Tide: Maybe Alex should pick up the Tide when we enter the store, lug it around with him as we shop, and leave the jug by the register when we leave. We try this. "Alex, we're not buying Tide ... "
What do you like about Tide? Do you like it because you know what it is? What's it used for? Alex stares at the ceiling of the store and says, "Tiiiiiide..." I point to the label and ask if Alex knows this word. "Bleach!" he says. I take his finger in my hand and letter by letter we spell "Alternative." He moves his finger over the label. "T – I – D – E. Tide! Ha!" Alex's laugh echoes off the gleaming mascara display nearby.
When it's time to return the Tide to the Tide shelf so it can be with all the other Tides, Alex, almost with love, slips the orange jug back. I tell him it's time to leave the store. He grabs the jug again when he thinks I'm not looking.
Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family's Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger's Digest, Autism Spectrum News, Fatherville.com, and The Autism Society news blog. He is on LinkedIn under "Jeff Stimpson" and Twitter under "Jeffslife." |
Last Updated on Monday, 26 March 2012 22:25 |
Written by Gayle Nobel
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Friday, 23 March 2012 16:03 |
People often ask me how I came to write "Breathe". Recently, I was interviewed by Kim Isaac for the RDIConnect Newsletter.
Kimberly Isaac has over 14 years experience as an autism therapist and has been an RDI Certified Consultant since 2005. Kimberly practices in Arizona and you can find her at www.autismwithexcellence.com Following is an interview Kim conducted with Gayle Nobel, author of Breathe.
Kim: Tell us what inspired you to write Breathe.
Gayle: I was inspired to write Breathe by my day-to-day experiences with my son, Kyle, now 28. I was also inspired by readers, often other parents, of my first book, It's All About Attitude: Loving & Living Well with Autism. They wanted to know how to get from here to there and I realized I had a lot to share about thriving vs merely surviving the journey of being mom to someone with autism. Over the years, I had collected a toolbox full of wisdom to offer others in similar situations. Inspiration for my stories seemed to pop up everywhere.
Kim: Sometimes people say, I don't even have time to 'think' about self-care. How would you respond to those comments and feelings that a parent may initially feel? How do you remember/monitor when to 'Breathe'?
Gayle: There are days when I feel that way too. It seems as though there is not a moment to 'breathe'. In addition to being moms, we are managers, therapists, teachers, advocates, etc. It's easy for our own personal needs to get delegated to the back burner of life. However, as I have heard and also said many times, this journey really is a marathon not a sprint. Our wells become depleted and dry very easily given the jobs we are doing. Therefore we must nourish ourselves to stay in the race. Burnout can come easily and if we are not taking care of ourselves, eventually it will be pretty tough to be there for our children. After awhile, and especially in the long term, we can't give what we don't have.
The time issue is a biggie. The tools I share in Breathe: 52 Oxygen-Rich Tool for Loving and Living Well with Autism can all be done in five minutes or less. They were written specifically with busy, sometimes overwhelmed, parents in mind. The stories are bathroom length- very short.
When to Breathe? The most important times may be when you feel like you don't have a moment to do it. Or when you are feeling stressed, need to calm down a few notches, need to be there for/with your child in a situation, when things are particularly tough and you want to respond rather than react.
Practice when you think of it so you learn what it feels like to create that shift in your energy. Taking deep breaths creates shifts on a cellular level. Unfortunately when we are stressed, agitated or overwhelmed, our breath tends to be short and shallow. This is our default position. It takes an application of mindfulness to slow down for a moment and decide to take those deep breaths.
It's so easy to forget that this tool is always available and can really make a difference. The way to remember is simply to practice. It's good to practice as you are settling down to go to sleep. The more it's practiced, the easier it becomes to access when you need a "go to" strategy.
Kim: What is the single most important message that you intended for readers to gain from reading Breathe?
Gayle :It is possible to cultivate an attitude which helps you live well, to thrive, with the challenges autism presents in our lives. Giving yourself the gift of five minutes to breathe, or note what you are grateful for, or practice some form of taking care of yourself physically or emotionally is the key to creating tiny, yet very powerful shifts in attitude and perspective. Your attitude will determine your experience.
Bottom Line...nourish yourself; it is a necessity, not an indulgence. You'll be better for you and definitely better for those you love.
Kim: How has your journey with RDI affected the view of you and your child, your family life and views on the importance of rest / balance and slowing down?
Slow down...then slow down some more...and just when you think you have really slowed down, slow down even more! That's one of the RDI tools that always seemed to be coming up. I ended up integrating that into the book because it was such an important tool to my son's growth and learning. At the same time, it has also been one of the keys to my ability to thrive after so many years on this journey.
If I was to go at the frantic pace I initially started at with Kyle when he was young, I might have exploded by this time. :-) RDI teaches about the value of normalizing family life and creating a balance with the rest of the family. It's challenging for us to do this. Balance and rest are important tools and also ended up as sub-themes in Breathe.
RDI takes us back to what's truly important - our relationships and experiences with each other; the moments. The moments are nestled within the stories and tools and photographs in Breathe.
Kim: How can people get in touch with you and / or order a copy of "Breathe"?
"Breathe" can be ordered on my Gayle's website http://www.autismwithattitude.com, amazon.com, barnesandnoble.com.
Contact me via my website or
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
. The AutismwithAttitude blog is an ongoing source of inspiration as well. http://www.autismwithattitude.com/blog/. I love questions and comments from readers. It's important that we support each other. |
Written by Gayle Nobel
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Wednesday, 14 March 2012 18:33 |
Kyle came out of his most recent cycle over the weekend. Hurrah! On Monday, I didn't want to send him to his day program because his 1:1 aide was not going to be there and the readjustment of the first day back might have been much harder without her.
How should we fill the day? Kyle had been home for eight days so an out of the house activity was definitely in order. It was a gorgeous day in Phoenix, Kyle was racing around the house with exuberance, and I was pining for my hike. North Mountain, with it's paved trail, and close proximity to our neighborhood, was calling out to us.
As soon as I opened his door, Kyle bolted out of the car to the trail. He took the first leg at a run before stopping to survey where we were. The beginning part is very steep but it soon mellows out to a gentle upward climb.
Hiking with Kyle is stop and start. At times, he is running up the trail, then at others, he needs a long break to stop and smell the roses and gather himself up. We went from running to stopping with everything else in between with lots of water breaks.
I decided I would have no agenda for our pace or how far we got. This hike was so that we could spend time doing something enjoyable together while getting exercise. It was not going to be at my usual pace and that was ok. What a gorgeous sunny, but not yet too hot, day in Phoenix and how grateful I was that Kyle was able to have a life again after the rough waters of the previous week. Life's simple pleasures are the best.
I was thoroughly enjoying my time outside, being with Kyle, and seeing him enjoy himself. People watching was fun too. I marveled at the variety of shapes, sizes, and ages going up and down the trail. Since the hike is short, many people do the trail more than once so some of the faces became familiar. My favorite was the mom pushing her toddlers in a double stroller with a baby in a pack on her front while chatting with her friend. I noticed her friend had the stroller when they passed us on the way down and I was hoping she had a really good grip.
Swirling thoughts:
We should really do more of this especially before it gets too hot.
Maybe if Kyle had some extra doses of endorphins, it would help ease the debilitating cycles every month. Note to self.
Phoenix is so beautiful when it's not blistering hot. Days like this are why we live here.
Kyle is suddenly keeping such a good pace, we may make it to the top where we can eat our almonds on the only bench on the mountain.
Wow, it takes so much energy for Kyle to do this, he must burn twice the calories as the average person.
The amount of mental energy seems exceed the physical energy.... his focus to keep himself moving is a bigger challenge than actually moving. Go Kyle.
About 3/4's of the way up, my swirling thoughts were interrupted by an abrupt stop. Uh oh, fatigue? My instinct told me it was time to turn around. Even though the downhill was less strenuous, Kyle didn't really want to walk when we turned around.
With coaxing, we headed down the mountain VERY slowly. The mid morning sun was beating down on us and our water was going fast. Walk a little, stop a lot, repeat. This was our pace down the mountain until Kyle suddenly came to a halt. Gently but firmly, he grabbed both my wrists, looked me in the eye and told me he was not moving any more. Clearly, he was DONE with this hike.
It was only 5 minutes (at MY pace) and a few switchbacks to the car but he didn't care. In fact, he looked as if he might have felt a little sick. Desperately, I looked to the side of the trail and there was a rock and possible resting spot. Nature's divine intervention because there were not many of these on this trail!
It was easy for me to sit down but very challenging for Kyle. The motor planning involved on shaky terrain and rugged slant of the rock was a huge deal for him. I was reminded of how easily we take for granted all the things our body does for us without thought. For Kyle, anything out of the ordinary pattern of movement requires a lot of thought and effort. Sometimes, he would rather flee the scene than work through it.
With my support and a little nudge, I got him to sit down. Phew! No shade, but at least a resting spot. Several people passed us on the way up and then passed us on their way back down again. We sat for a long time and I was starting to worry. What if he won't do the required walking to get to the car? Am I going to have to call for a rescue and how would that go? No, I decided I would wait as long as necessary and we would walk down. I was grateful to see more color in Kyle's lips again.
Eventually, after long while, I convinced him to get up and we slowly made our way to the car.
3,129 steps, 1.43 miles, 3 hours quality time with my son. Grateful.
Rock sent from heaven
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Last Updated on Wednesday, 14 March 2012 19:09 |
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