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It's All About Attitude Blog

Written by Gayle Nobel
Wednesday, 20 June 2012 21:39
BEHIND THE SCENES We have never taken Kyle to a live performance of anything. For a long list of reasons, it didn't seem doable. He is different now. He's been on such a spectacular roll lately particularly enjoying music related outings. So when I heard that Detour Company Theatre was performing South Pacific, I decided it was time. Kyle has already seen the video South Pacific and enjoys the music. "Detour Company Theatre: Making a journey in the arts possible for all." "Mission: provide quality and authentic arts education and performance opportunities for adults with developmental and other challenges, including deafness, blindness, and autism, through the magic and miracle of theatre." Perfect. Surely this was an arena where people would be accepting. The venue was Scottsdale Center for the Arts, a local amphitheater style venue where professional performances and concerts are held. I was impressed that Detour was going to be performing there. SCENE 1 - ALL IS WELL Tammy and I decided to take Kyle together. We knew it would be a stretch for Kyle, but also knew he could do it. So could we. Many times what's a stretch for Kyle is a stretch for us too. Without hesitation, he entered the building and then the theatre. We opted to sit in the last row so Kyle wouldn't have to do the motor planning to get down the stairs in an unfamiliar environment. Though Kyle is physically capable, the stress of motor planning down those widely spaced steps potentially added another level of uncertainty and could be a large obstacle. Even lowering himself into the theatre style seats is a challenge but one that he has been able to overcome faster and with more ease each time. It wasn't long before Kyle was comfortably seated waiting for the show to begin. He hummed softly, looked around, checked out his program and was relaxed. Announcements came first. Then a moment of silence. Kyle was silent during the entire moment ! Phew! And whoo hoo! The audience was invited to sing along. Kyle was most certainly going to take advantage of that invitation. Words are not necessary. Humming in harmony is where Kyle excels. During the dialogue parts, Kyle was still humming at times. Was the music still playing in his mind? Or was this a calming device? Perhaps some of both. On a scale of Kyle noise 1-10, his humming was approximately a 2. Though not constant, it was definitely more on than off. Kyle loves to listen and music speaks to his entire body and soul. That is a beautiful thing. But some other things were happening here too. He was also WATCHING! Yes, he was looking at what was relevant...... down at the stage with the show going on. It was lit up and we were sitting in the dark above it with a birds eye view. At times, Kyle went out of his way to look, craning his head over the low wall that was in front of our seats. He was just plain into it! This is a huge triumph for Kyle. For most of his life, visual attention to what 's relevant has been tough and almost non-existent. I'm talking about a breakthrough here. Huge growth! Tammy and I were thoroughly delighting in the whole experience of watching Kyle enjoy the show. The play was a great production. The singing and acting was awesome. It was evident a tremendous amount of work and rehearsal went into this show. An effort was clearly made to include a wide variety of individuals. It was really touching and inspiring to watch and listen to this performance. The scenery was awesome too, complete with live music played on a baby grand piano in the corner of the stage. SCENE 2 - KICKED OUT It was 30-40 minutes into the show. We were mesmerized by the production and by Kyle's response to it. One of the theatre ushers tapped Tammy on the shoulder. Huh? Tammy then told me we were being asked to LEAVE! Kyle is making too much noise. They are trying to make a recording of the show. Kyle's humming is interfering with that. REALLY?? I talked to the man, the usher. He told me the same thing and then added that he (Kyle) is ruining it for EVERYONE. REALLY? His grade 2 humming is ruining it for everyone? OK. Hmmm. I sat in disbelief for a moment and then got up and spoke to the usher again. "You are telling me in a show put on by a theatre company comprised of ALL people with special needs that a person with autism is being thrown out... or ok, asked to leave? Do you see the irony in that?" He just smiled. I sort of understood the recording situation (though there were two more shows from which conceivably they could have gotten the "perfect" recording.) Trying to be understanding, I asked if there was another area to which we could move. "No, he is ruining it for everyone." I was told again. I wanted to shout. I wanted to cry. Clearly, this man did not get it. Who was he speaking for? He was not at all open to trying to find a way for us to stay. Just to clarify, I am very sensitive about bringing Kyle to public places. It has taken me years and years to feel comfortable about it. This relates to my own issues and Kyle's difficulty with self control. I have never wanted him to be disruptive during important events. I have been extremely cautious and gun shy, sometimes to a fault. Kyle has missed out on some things because of this. I am super sensitive about his noisiness because he can get pretty darn loud in his enthusiasm. That is part of his communication and when he's feeling good, he's been known to belt out an exuberant and loud whoop or two. He can also be noisy when overloaded or stressed. So I am very conscious about whether he could be a disruption in different situations. That is why we have not taken him to a concert at the Musical Instrument Museum yet. When I heard about this play, my first thought was that it was safe. It would be a safe place for Kyle if he were to get a little excited and vocalize. The irony was that he was keeping it together. The humming was on the quiet side. I don't know how many people could hear him in the theatre. Maybe it was the entire theatre, given the way sound can carry in an amphitheater. Or not. But in any case, it was soft. Soft for Kyle standards, that is. I suppose any noise above silence during a play could be considered inappropriate. I assumed everyone in this setting would be understanding and compassionate. SCENE 3 - EXITING THE SCENE We had no choice but to leave. I am not the type of person to make a scene though it did cross my mind. Just after exiting the theatre, Kyle got very loud... in a happy, excited, "this is great fun" kind of way. Clearly he was holding it together, big time, while in the theatre. Another gold star for Kyle that evening. I was still in disbelief. Kyle was ok with leaving. Who knows, maybe that was just the right amount of time for him to be there. However at the rate he was going, it seemed as if he might have been able to sit for the entire show. No matter how much we talk about inclusion, the world is not quite ready for my Kyle. I might have expected this to happen at any other performance but didn't expect it to happen during this one. If Kyle had gotten very loud or needed to be up and walking around, we would have gone outside for awhile. I texted my friend who's daughter was in this production. It is through her on facebook that I heard about the show. She was mortified and suggested this man was probably a volunteer for the theater and not connected to Detour Company. SCENE 4 - MAKING IT RIGHT Early the next morning I received a phone call from the board president of the non-profit, Detour Company Theatre. Her daughter was also in the production. Coincidentally, she is someone I know from Kyle's first day program years ago. Apparently, news travels quickly. She was profoundly apologetic. She encouraged us to come back for one of the other performances that weekend. Detour is all about inclusion for the actors/actresses and also for the audience, she informed me. She really wanted us to give it another chance. Later on she even called me back after speaking to the director. She invited us to sit down near the stage where Kyle could be more part of the action. She offered to save us some seats. The motor planning issue about getting down there could be overcome by using the elevator. FINALE- AWARENESS Clearly, the usher and the person doing the recording had not been given the memo about what this show was truly about and that there conceivably could have been some people with special needs in the audience. We could have been asked to step outside and come back in a little later. And/or we could have been redirected to some other seats. I can understand the recording issues though with today's technology, it seems that unwanted sound could be taken out of a recording. But the comment that he was ruining it for everyone. This just comes from ignorance and insensitivity. Once I got past that, pulling the dagger directly out of my heart, I was able to bask in Kyle's many accomplishments that evening. And mine. ENCORE? We did not end up going back for another performance. By Sunday, Kyle was tired after a very busy Friday and Saturday. He needed to rest. So did I. We will try for Detour's next production. Now we know where the good seats are. I am now a supporter and invite you to check out the great stuff they are doing. Detour Company Theatre Read more Add comment (1) Hits: 5185
Last Updated on Wednesday, 20 June 2012 22:18

Triumphs

Written by Gayle Nobel
Thursday, 14 June 2012 22:03
Kyle's world has become larger. He now enjoys sitting in different rooms and seats in the house. For most of his life, he was a two chair man. He preferred to sit at the kitchen table or his rocker/recliner in his room. Those were his safety spots. For the last few months he has decided there are other interesting places in the house to sit and feel safe. Kyle now sits on the couch next to me in the living room and I can actually read. He enjoys relaxing there. The other night, I was reading a book on my Kindle and all of a sudden, he reached over, and began tapping on it. I realized he was thinking (maybe?) it was like the iPad and if he tapped enough, the drum set would appear. Kyle has had just a few experiences on the iPad. Months ago, I would not have thought it was for him. He has never been a TV or computer kind of guy. We could not convince him to even look at a screen for more than a nano second, if that. Come to find out, maybe we just weren't showing him the "right" things. Or maybe he wasn't ready. Within the last year that Tammy (our thannie) has been with Kyle, she has introduced him to music videos on the laptop. He loves music so that seemed a logical choice. At first he mostly listened. After she decided to place the computer in the direction he normally looks (off to the right side) he began watching. At first, it was just glances and then it turned in to full blown viewing. Why not try a movie? A musical was another logical choice and pretty soon, Kyle had a collection of movies in his room. He was even beginning to attend to some of the dialog scenes, especially if they were dramatic. He likes booming men's voices. Then, Kyle began watching musicals on the TV as well. At first, mostly listening. But after a quick while, he began viewing too. I know I know. Many parents are trying to get their kids with autism to stop watching so much TV. But for Kyle, this has been a breakthrough. We have discovered something else he can enjoy. And sometimes, enjoy WITH us. Recently, he even watched Secretariat with us, a movie without music. AND he had "appropriate" reactions during certain parts of the movie.... a huge breakthrough for Kyle. He has been horseback riding for 15 years so maybe this isn't surprising. It follows naturally, that now Kyle might be interested in the iPad. We have a drumming app (full drum set with different sounds) that he enjoys. I do believe he might have been asking for that when he tapped my Kindle. I quickly got Neil's IPad and pretty soon Kyle was drumming away and was happy as can be. And he was visually attending to what he was doing! I am grateful to Angela, his occupational therapist, for first introducing him to the iPad. What else might he like? The Apple App store is the place for instant gratification. Often, it's free too. I quickly discovered a piano App and downloaded it. He immediately took to it and used one finger to explore the notes the same way he does on the piano. Awesome! Kyle has a new level of attention and focus. At the age of 28, his world has become a little larger and more interesting and enjoyable. Triumphs are so sweet especially when they have been so long in coming. Read more Add comment (4) Hits: 4965
Last Updated on Thursday, 14 June 2012 22:21

Agape

Written by Gayle Nobel
Wednesday, 06 June 2012 18:09
Apparently Agape means love. I was not familiar with the word until I bought a bottle of this amazing vitamin for Kyle. I had been told by a couple of sources, including one of Kyle's doctors, that it could be helpful for Kyle. It also meant we could eliminate part of the handful of supplements he takes with each meal. I have written about Kyle's debilitating cycles. Beginning in July of 2010, he began having cycles of agitation/anxiety so severe they completely shut him down for 10 days, sometimes more. He was housebound and quality of life was severely impacted. Out of respect, I don't go into the details. These cycles made an appearance every 14 days give or take a day or two. They came regularly by the calendar, often by the moon cycle. We have battled these on and off since he was 11. We have never been able to find a medication which has a significant impact. It has been the "alternative" stuff that has seemed to make a difference. Up until July of 2010, he had not had one for five years. We were surprised, when for no apparent reason, they reappeared. During the past two years we have played medication roulette and have experienced partial results (but not enough), lack of results or lack of results plus adverse affects. We've even had/have some of the best doctors including a thorough work up at Mayo Clinic. About three months ago, we were at a fork in the road. Which intervention should we try next? Having just finished weaning off a drug which produced adverse affects, I was not quite ready for another one. Welcome Agape. The results were not immediate. I think Kyle had one more cycle before the change took place. In his history of success with "alternative" interventions, there was always one more cycle. This time, we were just getting ready to add another alternative treatment because we didn't think the Agape was having an effect. Waiting for the other supplement to arrive, we realized he had already gone a few days past his "due" date. We decided to hold off on adding the other supplement. "Each extra day is a gift." This quickly became our mantra. Five extra days was a plus 5 and on it went. As we got up into the 20's I began having trouble keeping track. We were celebrating each day and loving the fact that Kyle was truly living. The days rolled by. Kyle continued to feel well. In fact, Kyle was not just feeling well, we were seeing "Kyle PLUS". He was doing new things, noticing new things, breaking out of familiar patterns on his own, and wanting to be engaged more than ever before. Most importantly he was/is very very happy. Hmmm, was all this an added bonus effect of Agape? Or just the upside of life and learning without regular interruption? Perhaps some of both. Monday marked two months that Kyle has been cycle free. We still see each extra day as a gift. We don't know what the next day will bring. After such a rough two years, I almost have to pinch myself to realize this is not a dream. This may sound dramatic but the intensity of the cycles compared to the peace within Kyle now, is truly amazing. What's so special about Agape? Isn't it just a vitamin? I'm going to get a little scientific here. Thank goodness for copy and paste. If you want the full scoop go to: http://www.center4autism.org/agape/faq.html Agape was developed by Cindy Schneider, MD here in Phoenix. Two of her children have autism. Agape is a pleasant tasting liquid multivitamin designed for even the most sensitive individuals. Agape is free of gluten, dairy, corn, soy, food dyes, and artificial sweeteners. Agape is sold only in glass bottles, sweetened with Stevia and preserved with EDTA. This allows high level nutritional and mitochondrial support while avoiding reactions to plastic contaminants, food allergens, and harmful preservatives. Agape offers: ~~ Pure Ingredients in their most Biologically Active Forms ~~ Methylation Support To Enhance B12, Folic Acid And Glutathione Metabolism ~~ Mitochondrial Support For Optimal Neurological Support ~~No Sucralose, Fructose, Artificial Sweeteners, Copper, Manganese, Iron, Antimony, Or Food Dyes ~~Highly Absorbable, High Potency Formula That Addresses Common Nutritional Deficiencies ~~Support for Methylation Defects in Autism Spectrum Disorders - The Gene/Environment Interface Apparently, methylation is very important. I have been trying to find a simple way to explain and understand it. The full scientific article is found here: http://www.center4autism.org/therapyMETH.asp I've copied below a few key points from the article. "It has become increasingly evident that individuals with autism have impairments in their capacity to methylate. Methylation reactions are those reactions in our metabolism that involve the transfer of a methyl group (a carbon with three hydrogens attached) from one compound to another. These reactions are required for many of the most vital pathways in our metabolism. The building or repair of every cell in our bodies requires methylation. The silencing of viral genes involves methylation. We must be able to methylate the dopamine receptor in order for it to bind with dopamine, transform lipid membranes, change the frequency of brain waves, and increase our attention. The coffee addict craves caffeine, a methyl donor, because it causes a burst in focus and attention. An alarmingly large percentage of our pediatric population has been placed on Ritalin (methylphenidate), a methyl donor, for the same reason. Messages are not transmitted along neurons accurately and efficiently unless the nerve is insulated with a substance called myelin, which cannot be produced without methylation. The most commonly known defect in myelination (the protection of nerves with myelin) is multiple sclerosis, a condition in which anti-myelin antibodies are made. Anti-myelin antibodies are frequently found in children with autism as well. A person who is less able to methylate may present with inflammatory conditions such as eczema, colitis, asthma, or arthritis, as methylation is also required to produce glutathione, our body's primary antioxidant. Anxiety and obsessive-compulsive tendencies are also common, as the production of serotonin, our anti-anxiety neurotransmitter, requires properly functioning methylation pathways. Serotonin then goes through a series of reactions including methylation and is converted to melatonin, the compound that allows us to fall asleep." Some of my medical friends may be skeptical. But there are only two explanations. Kyle's cycles suddenly stopped on their own for no apparent reason. I suppose that's possible but seems unlikely as the pattern was so solid for so long. OR the Agape is having a positive impact. Kyle takes his Agape twice a day and I'm not about to change a thing. He also takes a supplement of extra methylated folate in capsule form each morning as a booster since he's such a big guy. Agape is loaded with other nutrition besides the folate. The people who work with and love Kyle are amazed and delighted at the changes we've seen in him. Each extra day is still a gift. What a great stance toward life. Read more Add comment (111) Hits: 139023
Last Updated on Wednesday, 06 June 2012 18:49

The Mind Body Connection, and Exercise

Written by Gayle Nobel

Saturday, 26 May 2012 00:31

I'm baaaack! Well, sort of. It's been awhile. I've been on a writing sabbatical but hope to get back to my blog as of.... this blog.

One of my fans shared a blog with me. Ido in Autismland is written by a non-verbal young man and is very, very powerful. I love what he says about exercise. It confirms what I have seen for a long time.

Kyle just got a new treadmill. Sometimes he is resistant or has trouble getting himself together while using it. However, I see how much he seems to need it. Now I have extra confirmation that it's ok to push a little.

ABOUT IDO: I am an autistic guy with a message. I spent the first half of my life completely trapped in silence. The second on becoming a free soul. I had to fight to get an education. Now I am a regular education student in 9th grade. I communicate independently by typing and pointing to letters. I am getting good grades with no academic modification and I am a writer of autism adventures.

Here's what Ido has to say about The Mind Body Connection, and Exercise

This morning I was edgy. My electrical currents were coursing through me. In Autismland that means either do stims or temper. It is a stressful time for me and it is hard to be calm, but I can't freak out just because I'm stressed. This is what my family did to help me: first I worked out with weights. I complained non-stop. Then my mom insisted I go on the treadmill. I lasted fifty minutes including running on and off. It is amazing. I feel normal now.

This summer we have decided to concentrate on fitness because my body needs to listen to my brain better. If I could have a trainer every day, how would I improve? I wish I could do that, but we have to work out even without a trainer because it is important that autistic people wake their mind/body connection. It is not do-able if the person is not using his body in exercise ever.

I recently hiked with many autistic people. It was short. Maybe a mile, but it had a hill at the start. I saw many turn back after five minutes. They were not used to moving enough. My new goal is to get fit this summer and see if it helps my brain too.

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