Weve Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose


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Slashing their jobs, leaving them to languish at home, detached from any community of peers, with no viable alternative discriminates against our most vulnerable. At a minimum, 14 c must remain intact for our subset who lack capacity for competitive employment. It appears this briefing was designed to hear just one side of the story, from the more cognitively capable sector of the disability community. Thank you for your consideration of our comments.

Now in her mids, such a portrait of calm reflection would hardly have been possible decades earlier.

We've Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose

As an older child, his outbursts and violent tantrums helped push his agonized mother, for a time, over the brink of sanity. We lived in a perpetual state of high alert. But Stephanie Shirley is one illustrious British Dame whose tumultous story makes her completely relatable, seeming almost like kin, despite her immense accomplishments and elevated status. If you, fellow Americans, have not heard of her, she is revered as an information technology pioneer, plucky and perservering businesswoman, and autism philanthropist. Allow me to thumbnail her remarkable story, then focus on the autism.

She was born Vera Buchthal, the daughter of a Jewish high-court judge and his Austrian wife, in Germany in At the age of five, as Nazi barbarism descended on the continent, Vera and her older sister were among the last of the Jewish child refugees placed by their distraught and desperate parents on the Kindertransport to the UK. Dame Stephanie Shirley. In , Vera and her mother, who had also escaped to England, became British citizens. Deeply bonded to her adopted country, she felt immense gratitude for its people, freedoms, customs and intellectual riches that allowed her not only to survive the war, but also cultivate her talents.

After marrying her huband, physicist Derek Shirley, she decided at age 29 to start her own company selling software, at a time when no one sold software and she had no experience running a business. She would hire other programmers — by and large, smart and skilled women who appreciated the flexible hours — on a freelance basis as needed, and thus her company, Freelance Programmers, was born. This was followed by another momentous birth: of her son Giles, in Her prodigious memory allows her to share details of physical and emotional turmoil, and the costs to her wallet and relationships.

Parents of children with severe autism will feel as if they entered a parallel universe reading her words, recognizing her daily hardships and emotional agonies, for example:.

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We snatched food when we could rather than sitting down together for meals. Derek and I resorted to sleeping in shifts. You can imagine what this did for our relationship. But what really frightened me was how the strain was changing me as a person. Emotions and ideas that I neither recognized nor approved of seemed to pop up in my head without prompting. After Giles develops epilepsy, the crushing weight of his disability grows heavier.


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Your emotional involvement with your child remains as intense as ever — yet you also begin to see him as, in some sense, the enemy. What horror will he come up with next? What disaster will he inflict on you, or himself, next? Now, Dame Stephanie never says such things out of disdain for her beloved son, to whom she was clearly profoundly devoted. Instead, you see her exhaustion and exasperation with his mysterious multi-layered mental disorder that caused so much harm to himself and others.

She are her husband are desperate, yet powerless, to help him.

For better or worse, they turned to an institutional placement for him. With money left by her mother, Dame Stephanie eventually purchased a cottage for Giles, a weekend home base for him near the hospital. The purchase of a larger and more modern house, The Cuddy, followed. Indeed, after a while he began to pick up single-word language and the ability to engage in some community activities. Wanting a sustainable business model and the ability to benefit others like Giles, she made The Cuddy a charity, financed by relevant authorities and a charitable trust she set up around At the starting line of what would become her great passion, philanthropy, she endowed her trust with cash and F International shares, hoping that when sold they would be worth considerably more.

As her wealth grew she was able to expand, acquiring other properties for this supported living model. Nothing I can write can begin to convey the desolation.


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  • The beloved, mysterious, tormented, beautiful being who had been at the centre of my life for 35 years was suddenly and irrevocably absent. Now we could set our minds to rest on that score. In her later years, and continuing today, Dame Shirley championed the role of philanthropy to find answers and solutions to societal challenges.

    She helped build schools and services. And today she aches as she sees the bottomless need for solutions for the massive burden of autism. Joshua always had a beautiful smile, but years of self injurious behavior had wrecked his teeth. Unfortunately, as a young adult with a history of severe aggression, dental procedures became almost impossible.

    Our son Joshua has always had a beautiful smile! It was so heartbreaking when the aggression and self injurious behaviors increased to the point that major damage was done to his teeth. Before Josh went to inpatient treatment in , We sought a dentist for months and only found long waiting lists and rejection for treatment. Now, we have found a great solution involving an alternative to general anesthesia, which is dangerous for Joshua, that we wanted to share with you. His parents were concerned that one of his front teeth were bothering him as he kept pointing to them, but he had never been seen in a dental clinic without general anesthesia.

    At Orange Grove, our goal is to avoid general anesthesia as much as possible. Especially with individuals with special needs, it can have many risks.


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    • Although we know that sometimes that is the only option we have, we utilize many methods to avoid this. One of them is desensitization, which is a way for patients to get slowly more used to the dental office through sometimes multiple visits. These techniques allow them to gradually learn that we are there to help them and work with them and feel safe. When necessary, we use the papoose board. The papoose is a means to protect the patient and providers from potentially harmful movement.

      If a patient is attempting to grab instruments, it could be dangerous to the patient and the people around them.

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      The papoose serves as a means to safely stabilize an individual that may attempt to move during dental treatment in a way that is unsafe, while allowing them to be seen awake without the health risks general anesthesia can have. Joshua first came into the dental clinic with no issue. As we were told he never had been seen at the dentist while he was awake, we opted to use the papoose with the consent of his parents. We look at each patient and each appointment to determine whether or not protective stabilization, such as the papoose, is needed in order to allow for the least restrictive means possible.

      We learned that Joshua enjoys Christian music, and had it playing as he walked in to make sure he was somewhere he felt comfortable and welcome. He walked around our clinic, which includes a Jukebox, a PacMan machine, and TVs above the operatories where patients can watch whatever they want. He was resistant at first but seemed comfortable once he was laying down and secure. After he was in the papoose we did his comprehensive exam, which includes looking at his teeth and taking x-rays.

      He would move his head at times when we touched areas that were sensitive, but we were able to complete the full exam and determine the next steps. With the need for extensive dental work, we decided to continue using the papoose for appointments for the time being. He left his first dental appointment he was awake for alert and happy, especially after he got a prize at the end.

      His mother told us how shocked and happy she was we got everything done, and we were all very thankful that we were able to complete his first visit successfully. I have seen Joshua three times so far. Since his first visit, we have been able to complete an extraction, a large filling, and deep cleanings throughout his mouth.

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      He comes in and we have the Christian music ready, the TV on, and a prize waiting for him when he is done. Each visit his behavior has improved, as his oral health improves and his teeth and gums feel better. He has so far come into the clinic and left with no issues. We still have extensive work to complete, but my hope is to finish all his dental work in a timely manner and to continue to see him get more acclimated to the dentist. Each visit he seems more comfortable is a success for all of us.

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      At Orange Grove, there is an approval process to allow for the use of the papoose. I first got some articles regarding its safety and effectiveness in dental treatment, and safety compared to general anesthesia. This went through a Human Rights Committee with the help of our director, where we explained why, when and how we would use it. We made sure to let everyone know it is not used as a way to make an appointment easier, but a way to make our patients safer. After this was approved by the Committee, the dental staff watched videos and modules to learn how to use it.

      I trained them on my own, as well as with our behavior analyst. Each of us got into it to see what it was like, and to understand how to place a patient in it in a comfortable way. When caregivers are present during appointments while it is used, we make sure to educate them about why we use it at the office. Our goal for Joshua and all our patients is for them to be seen in the most comfortable and least restrictive environment as possible.

      Right now, the papoose is the least restrictive means to see Joshua safely.

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      We will continue to observe each visit to determine if at some point we may not need it. For some patients, they choose to be seen with it, as it works similar to a weighted blanket. It can provide for sensory needs and can also serve as a sense of security.

      Weve Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose Weve Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose
      Weve Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose Weve Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose
      Weve Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose Weve Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose
      Weve Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose Weve Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose
      Weve Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose Weve Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose
      Weve Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose Weve Been Here All Along: Autistics Over 35 Speak Out in Poetry and Prose

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