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In the world of Autism Spectrum, someone once said, “There are those out there that will Help You…and there are those out there that Want Your Money”. It hurts for us to hear this, and yet, as with everything else, this is true as well in the world of Autism. It hurts us more when it’s our precious children that happen to be victims to those that are out for money. These ones prey upon the desperation of the parents of Autism Spectrum Children, and work hard to win their trust, knowing that loving our children the way we do…we will pay our last dime to make them better.
Therefore, this situation sets up a continuous rise and fall of hope to hopelessness…and we become jaded, distrustful, and cynical. We may feel that we cannot take the polar dives from joy to pain in our hearts any longer…and so sometimes we give up! We may even begin to think that if it sounds too good…then…it cannot be true!
I have felt this way many, many times in the first 8 years of my son’s life. I was close to giving up hope dozens of times, and thank goodness, I never did! Perhaps if I relate an experience that I had, it will help you understand why I am so thankful that I never, ever lost hope…
One day…
…about a year ago, I had the pleasure of driving down Hwy 49 in California, called the Gold Miners, or 49ers trail. Along this trail, you can visit and learn the history of all those miners who panned for gold…looking…looking for the glitter. I got to pan for gold as well…and realized how very hard and tedious it was. As I worked the pan swirling round and round looking for the glint of yellow…I found much that shone bright in the sun…only to have the miner tell me, “Nope, only fool’s gold, little lady…”
And so, I worked my pan to and fro…back and forth…making swirling and swishing movements…with the object being…since the “Gold” is heavy…heavier than the sand, and silt, it STAYS in the pan! I liken this “REAL GOLD” to “Helpful, Progressive, and Functional Therapy Protocol”…It “STAYS IN THE PAN”, so to speak…and it withstands…there is no argument against it, as it is devastating in its logic, and it just makes good sense. It “WORKS”…
Fools Gold, however, may shine, and it is pretty…but it is “VALUELESS”…just as a therapy protocol or center may be “pretty”, perhaps a very nice and shiny facility with nice therapists. Be sure to ask yourself, “What is it really…little lady?” “Is it mere fools gold?” “Is it worth anything?” In other words… “Is this therapy or treatment doing any good, and is my child progressing?” If not…Then…It is VALUELESS…and not worth anything, especially not worth your money and time!
Please do not make the mistake of thinking that there is NO GOLD…just because it may be difficult to find. It takes effort, much effort to find it…nevertheless…IT’S THERE!!! There, also may be those that call you foolish for even trying and for going to such efforts…yet the reward is great…when you can shout at the top of you voice, “Eureka!”
You may wonder if I ever did find gold…The answer is YES!!! I found “GOLD” literally…and better yet…figuratively…with a treatment plan perfect for my son…worth all the gold in the world and more…
“EUREKA !!!”
BY: Kimberly Larochelle
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I am very proud to be part of the Advisory Board of the Sensory Star Program. Kathleen Tehrani is working very hard to fulfill a very important need and considerate kindness in the Autism Community and to all of the traveling population with important sensory considerations.
This website is a great reference that a traveling family can go to and find sensory friendly accommodations. You can find a hotel or resort on this site that is identified with a Sensory Star™ logo and know that it’s designation means it complies with a high standard of providing an environment of overall sensory comfort for it’s guests. This is a great service to the familes that struggle with these sensory issues especially sometimes this can this be the case while on vacation. Maybe this service can make vacationing a little more enjoyable and stressfree.
Here is the website:
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Jules Burt is making city tours to Tampa , Sarasota , Plant City , Orlando and many more to raise awareness and to benefit the children and families with Autism. Throughout the country, Hikers in High Heels will unite to raise awareness for Autism. Her motto is “Talk about Autism…It’s closer than you think!”
Jules is one great lady who, single-handedly, saw a great need in the Autism Community and not only did this need touch her heart deeply, but she put her words to action…in other words…she got busy! Many will see a desperate need, and a few will work hard to fulfill a desperate need. Jules continuously keeps a pulse on the Autism Community and keeps on working to fulfill the needs of the families and children of Autism.
She leads with a glowing smile and a gleam of purpose in her eyes. Her enthusiasm is contagious as she speaks, and she walks with a stride that makes everyone want to follow in her steps closely so as not to be left behind.
The High Heel Hike is a wonderful means to bring about a more positive direction in the world of Autism. The purpose and funds received will go to the families, the children, and to assist in the everyday lives that are such a struggle for these ones, day to day, moment by moment. Not only is the Hike beneficial, but Jules Burt makes it a glorious and fun-filled event where all you hear is a roar of laughter and all you see is a bright horizon of smiling faces.
Here is the link to the site for more information on Jules Burt and the High-Heel Hike.
http://www.highheelhike.com/
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My heart was torn in two complete pieces…and both pieces were crushed as I heard the conversation between my two little boys. My oldest, age 8 at the time, and my youngest was 6. My 8 year old son was on the autism spectrum…while my 6 year old son is not.
We were at the playground and here is how the conversation went…
“You ruin everything!” my youngest choked out with frustrated tears streaming down his flushed cheeks, “I was making a friend…!” “Why, why, why…” he sobbed as he threw himself into my arms so I could comfort him, and help somehow…someway… Helplessly, I held him, as I gazed with pity and heart-wrenching pain at my other son who was completely confused as to why and how he had hurt his little brother.
Being on the autism spectrum, my older son had several “stims”, and as had happened many, many times before…these stims, or what typical children consider unusual and repelling behavior, manifested themselves at the playground this day, and had chased off a budding friendship that my other son was cultivating.
I felt devastated, and deplete of any answers for either one of my children. My heart bled and grieved deeply for both of my little boys. The pain and frustration of my youngest combined with the pain and frustration of my older son who couldn’t understand and yet knew that somehow he had done something wrong. The situation was overwhelmingly sad and every fiber of my being cried in futile anguish.
Twenty minutes later, however, the sun rose again! There was laughter, smiles, and complete forgiveness from my youngest…the “sibling of the spectrum”. As I watched, my two boys play the game that my oldest chose, as was the custom…my heart was mended. Tears still streamed down my face, but their source was from a tremendous degree of admiration for my little boy…my little “sibling of the spectrum”.
“Long-suffering” and “Truly Kind” were the words that describe my son. He was so very, very strong of character, integrity and loyalty. I was in awe of his resilience. I wanted to erect a statue in his honor right there on the playground…there for all to see the little hero, that played alongside his brother…loving him more than himself. This unselfish love…he seemed to have in abundance, and I cherished his little heart.
The “siblings of the spectrum” carry a heavy load, and yet their horizon and broadness of empathy is grand! Their level of understanding and patience is “off the charts”, and many, many times…they forgo their own wants and desires by putting their brother or sister ahead of themselves. They quietly busy themselves while their parents more often than not; have to give their sibling more required attention. They swallow embarrassment, and most times, pretend to ignore it…their honor is unsurpassed!
They are the “Siblings of the Spectrum”…and…should be revered as grand pillars of stability in the “Autism Family”. They are the quiet and humble hero’s that hardly ever get recognized for the calamities and disasters that they can overcome daily.
I wiped my tears from my eyes…walked over to my little one…my little “sibling of the spectrum”, kissed him on the forehead, and looking into his beautiful and kind little eyes that now laughed instead of cried, I said, “Thank you…”, and I meant so very much more…
By: Kimberly Larochelle
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The 4th Annual World Autism Awareness Day is April 2, 2011. The Empire State Building in New York City and the CN Tower in Toronto , Canada — will turn their lights blue to raise awareness for autism and to commemorate World Autism Awareness Day on Saturday, April 2. Many all over the world will also show respect and promote awareness to Autism by wearing blue and turning their household lights blue on the evenings of April 1st and 2nd.
The Mane’ Center will be showing our support as well and in promotion of awareness everyday. Everyday can be and should be an opportunity to spread Autism Awareness.
This is a message from United Nations Secretary-General, Mr. Ban Ki-moon last year 2010 commemorating World Autism Awareness Day. Please watch.
http://www.worldautismawarenessday.org/site/c.egLMI2ODKpF/b.3917065/k.BE58/Home.htm
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| It’s spring again, and that means Easter is just around the corner for many. I found this Gluten/Free recipe for “Hot Cross Buns” which is a spring time tradition that those on a Gluten/Free Diet cannot usually enjoy. I found this great site with many recipes and tips for those who struggle with this sometimes difficult diet. It is called “Living Without”. There are many variations with the recipes in this On-line magazine including this one for “Hot Cross Buns” that adapt to Casein/Free as well as Gluten/Free. I hope this tip to this helpful site will be beneficial to any and all that may need practical help with the question, “What can we eat now?” Here is the link to the “Hot Cross Buns” recipe:
http://www.livingwithout.com/recipes/gluten_free_hot_cross_buns-2000-1.html
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| The Movie, “Walking in the Dark”, created and produced by award-winning filmmaker Brian K. Dery, is making another film debut in Atlanta on April 30th. This movie/documentary about the world of Autism is exceptional and it has helped and touched the lives of many in regards awareness, and as a practical guide to those of the Autism Community and all others who would like to understand and help those that struggle for answers. A huge “Congratulations” and “Thank You” goes to Brian K. Dery for the great efforts he made in getting this film made! Here is the link to the movie trailer:
http://www.youtube.com/watch?v =c_erZhKP018 |
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Strength Beyond What Is Normal …A Mother’s Story…
(this is a true story)
His name was “Curley”, and he was the meanest Bull that you had ever seen…and yes…I am talking about a real “Bull” with four legs and horns. Uncle Homer had always warned about Curley, and the whole family would shutter, as he would tell the tale of the time when Curley had him cornered and he had to crawl under the truck.
Well one day, as the family sat by the lake, my mother and her cousin who were only little girls at the time, were walking along the fence when they saw to their horror, “Curley was out!” My mother still remembers feeling Curley’s hot breath on the back of her heels, as she and her cousin Nancy ran toward the rest of the family, down by the lake.
Needless to say, when the family saw the scene, they all leaped up from their chairs and started running, all except one person…My Nana, my mother’s mother. She stood up, feet planted and with a determination, that we see in movies where the hero sacrifices himself on behalf of the noblest of causes…She picked up a lawn chair, and held it in front of Curley’s charging advances, while she said, “Stop, Curley!” Her voice was low, and resolute, and her stance was firm and unshaken…and…Guess What? Curley stopped…yes he stopped right then and there, and slowly turned and walked away.
You all may be wondering why I have just related this story, and what it may have to do with Autism. Well, I personally gain a tremendous amount of strength from the deeper meaning as we answer the pending question that we all have. Why would a slight little woman of only 5ft 4in, go up against this ferocious animal…especially, when everyone else just ran for their lives…a pretty normal reaction to a charging bull…don’t you think?
Well, you see, that little lady was reacting to an instinct that is stronger than any force out there…The intense Love and Protective Bond that a mother has for her child. Her child, her little girl, that she loved more than life itself, was in imminent danger, and so there was never a question in her mind when she held up that chair…she had to “Stop the Bull!”
All mothers have this knee/jerk reaction when it comes to the protection of our most precious possessions, our children, but when it comes to mothering a child that is on the Autism Spectrum…well, that is a whole different level and dimension of protection. To me, “Curley the Bull” represent “The Autism Spectrum”…and this bull is charging…head on towards our children. As mothers, and parents of our beloved children…we see the danger…and we face it, with feet planted, head on! We don’t hesitate, and we don’t even think of ourselves or our own fears…even though we may have them…Our children are our priority, and nothing shakes our focus from our love and protection of them.
We muster up, with strength beyond what is normal to face the bull that is Autism, and we grab a chair and hold it firmly in front of it’s advances. We face the bull that is Curley everyday with gut wrenching courage. It can take quite the toll as well, because the world that we live in, sometimes feels very ill equipped to deal with the “Bull” that is Autism. It is a constant protection that we feel we must bolster up as well, as this Bull of Autism has many faces, and of things that most mothers of typical children are not used to facing and protecting their children from. Things like school, peers, society, ect.
Others may not understand us, or comprehend the magnitude of this level of protection that we have developed deep in our hearts, just as all the others in my story that ran away. Nevertheless, they see it, and they admire it as something very rare indeed. As this is story of my grandmother and “Curley” the Bull is still a favorite tale in my family that is told again and again with much fondness, for now some 60 years.
So be of good courage, my friends…and stand firm…put on your concrete shoes, and grab up your chair! Take a firm grip, and “Face It”…with unrelenting vigor…The “Bull” that is “Autism”.
Kimberly Larochelle
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Time magazine put Temple Grandin on its list of the 100 most influential people of the year! HBO produced an award winning movie based on her life! Books such as, “Thinking in Pictures” and “Emergence: Labeled Autistic”, have been written as well in which Temple Grandin wrote about Autism.
Grandin, now considered a high-functioning person with autism, earned a Ph.D. from the University of Illinois and is a professor of animal science at Colorado State University . It is amazing to realize that when she was a child, the doctors told her parents that she should be institutionalized. This was a common recommendation for autistic children in the 1950’s. Thankfully, her parents refused and got her intensive intervention.
Temple Grandin spoke to an audience of 2,500 at Drury University . Mary Failla, and received a standing ovation. The autism community understandably admires her very much and her life’s work is exceptionally motivating. Here is a clip of part of her speech, and I hope all find it as inspiring as I did.
http://www.theautismnews.com/2011/03/04/autistic-professor-temple-grandin-inspires-crowd/
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I have a tattered little piece of paper that decorates my fridge, and it’s nothing fancy…really quite worn…but on it is written some of the best advice that I have ever given myself. It is called “10 Helpful Hints”. The reason I keep it on my “fridge” is so that I may FOLLOW this advice that I have given to myself…And…I am reminded everyday, several times a day, every time I open the fridge…”Follow Your Own Advice”…
It seems that the closer I follow these 10 little tips…Life flows a little easier, and the world seems a little brighter. The more I read them and keep these tips foremost in my mind…I seem to be able to muster up more Hope in my heart, along with Courage and Strength.
I have found that in our Autism Spectrum Community, the struggle can be quite hard, and it can take a toll, physically, mentally, and emotionally. If we can muster up though, and be strong enough one day, while our fellow may be lacking on that very same day…then…we can pass along a “shoulder to lean on”…and maybe someone will provide a “shoulder” for us, on another day…when we may be stumbling… The point is, we are all on the same “crooked road”…and just as I have been up built by this tattered little slip of paper…I will pass it along…in the hopes that it may give someone else a boost.
- Never give up on a cure.
- Read, read, and read some more everything on the subject…then keep what’s good, and discard what’s not…and keep a “not sure” file as well.
- Listen to your “Gut”…there is no one on this earth that loves this child as you do…or that knows this child better that you do…so “Arm” yourself with your own wisdom of your child, and become his or her best Advocate.
- If a therapist, doctor, teacher, etc…does not connect with your child…Find someone that does.
- If a therapy or diet is not having successful results…stop…and find something that will bring success.
- Ask questions…lots of questions…and write them down, so that you can carry them with you when you go to your child’s doctors, therapists, etc…and if your questions are met with distain, sarcasm, or with a patronizing response…Find someone that will answer your questions with respect and dignity.
- When you feel like the world is caving in on you…take a Bubble Bath, a Long Walk…or anything to help you re-group to face the challenge again.
- Try to stay healthy yourself…this is hard as you may feel selfish about giving yourself any attention…so…just remember who you need to be healthy for…Your child… and they are depending on you…You cannot assist them very well if you get sick…
- Join a Support Group…and not just any support group. Make sure that you will be able to gather “purposeful” support from this group…and that it truly satisfies your need of support in both a practical, and in an emotional sense. Ask yourself, “What was I able to take away from this meeting?” Any tips or information, and maybe even play dates for my child, etc…not just a “Gripe Session”.
- Do not feel guilty that your child is in this situation, and do not plague yourself with the “What if’s” or the “If only I knew then what I know now”…and Do not look back with regret…just keep moving forward to Accomplishment!
