365 days, 52 weeks

Note: This was abstracted from a post on Facebook that I wrote yesterday about my yearlong weight journey. Also looking for a series on holistic health (mind body and spirit) to be forthcoming.

365 days, 52 weeks

Same Shirt, froma TOPS Fall Rally in 2014.

Things have changed in those five years
Graduated College, Moved out from my parents.Got a driver’s license,

however
On October 8, 2018, nearly 12 years after I walked thru that meeting room door, I had gained 58 pounds, the largest weight I’ve been in my life. I had been on my own for a few months and lived in a sweet independent “I’ll do what I want to because I can” phase, but on that Monday night I learned that I had to make a change for the better because I wanted to be healthy for me and I have the tools and opportunities to do so. So I did.

I walked around my neighborhood, then my City, I bought a fit bit and tracked those steps, moving more.

Soda is my addiction, as oftentimes with my medicine it will make me hyper, however I had issues with that for some time, but because I was losing excessive amounts of weight I didn’t Care.

I joined a gym by a newspaper special for the summer and went full throttle, six days a week, started really not becoming myself, had more issues physically and not eating a balanced food plan.

On September 13, it was brought to my attention of what I needed to do and how to get back on track. In 11 months I dropped 34 pounds, I didn’t want to but followed the advice of the professionals because they knew best.

As expected I gained weight back to the present level but have the healthy balance of mind body and spirit. Through a benefit of my health insurance, I have returned to the gym but only a few days a week, I plan my meals when possible and track them.

at the event this weekend I learned it is best to take the pounds off slow as hen’s by the name of the TOPS acronym, Take Off Pounds Sensibly, therefore I was assured that I am now doing just that.

Book Review: Demystifying the Autistic Experience: A Humanistic Introduction for Parents, Caregivers and Educators (2002)

Around the time this book was written the author’s name was brought up in conversation as “the one who got it.” Little did I know of 17 years of molding into the man I have become, and a unique 50 cent book in a thrift shop, I would discover that the book would make me get it more.

I was in an interdisciplinary meeting at the time, it was stressful we were about one year out of the RTF, about one year near the completion of High School, yet I was still in services that I now know were at thw time were excessive and not a proper fit given the age. However, in this meeting, a gentleman who was a represntative of the County Mental Health Office, and now serves in a more indirect role of my employment had mentioned the gentleman. Myself and my parents were skeptic and it even brought emotions in the meeting very deeply. However we would move on. By the way that county representative is acknowledged in the book.

Fast forward to two days ago, when I was reading the book, it tells of what we as individuals on the spectrum feel and how we want what we want, and how we express what we express it in the way we do, even if it may seem odd to others, however it is the way it is.

He explains several things that make sense to me. Like the adrediline and cortisol and the necesity to exert energy regularly to relive it as well as the stimming along with the person centered language and the importance of treating an individual on the spectrum for who they are although we are unique in our very own way, to see the entirity of the person as a whole and to have them feel as they feel in their own special way.

Many who have heard of Mr. Stillman have heard of his Wizard of Oz Obsession. As he got older it would be precarious to explain this to a friend, however he was allowed to keep his obsession, in a secluded private place in the home. This being said, any individual has the right to enjoy whatever it is to enjoy. For those who “age out” of that thing to the point where it may seem inappropriate, it is best to find a private place of the home and let that indivual visit that obsesion from time to time. We have to keep in mind this was before the internet came into play, which has made individuals on the spectrum grow their intellect by leaps and bounds. My parents had a conputer given to us by my late uncle in 1998, not many had a computer at the time, I cannot tell you how grateful I am to my uncle for donating that to us. Nonetheless, it has made me mold into my techonoligicla capable self that I am today.

Sometimes, we need to take a break from the Internet and social media and be thankful for the goof old pleasaure of life like the outdoors, friends, family, etc. We are grateful for the advances of technology, however it is important to get active and stay active in many activies that human involvemnt can provide.

Lastly in his biographical chapter of the book, he gingerly discusses his sexuality a bit. While 17 years after this book was published, this was a very heated are to discuss about individuals on the spectrum, i felt it was a necessary component to the whole picuture because sometimes you have no idea what that person feels until you ask them and heck, they may not even know. Yes, the LGBTQ community has come leaps in bounds as a whole, however discrimination still happens, as such I feel there needs to be openess to this subject in both sides of the Autism Spectrum Communities, both in the I/DD field and Mental Health field. Professionals are afraid to ask, training is needed for each and every professional and yes there are views that a person may have, but they have to put them aside to see what makes the person happy. Because once the persons close to them leave, they many not be happy with societal norms and want to believe what they want. We have made policies and statements about this in the governmental communities, however we need to “stick to our guns” in this effect.

The book was one of the best books on the spectrum I have read in a while.

Autism Acceptance Month – Day #16: The Bathroom

NOTE: As part of this subsection for Autism Acceptance Month, we are exploring topics of independence. As such I feel it is necessary to discuss needs of the restroom and other related material. As such the content may be disturbing to some, however I do feel it is a very necessary element that needs brought to the spotlight. Reader Aware!

In Autism Acceptance Month we mostly talk about topics and milestones that are bright and sunny. However, I unknowing came across a story on PBS Newshour that highlighted an individual with autism. We do know that Autism is prevalent in males, in fact this year 1 in 59 males are on the spectrum. When Newshour was highlighting this individual a toileting issue that not only happened in my childhood, but I did some research and found it, along with other issues to be prevelant in males across the spectrum Included below is the video of that report, if you do wish to watch it.

Anyway, the story, in part, highlights an individual on the spectrum while although verbal, is limited in functionality. His sister, who is slightly older than her is interviewed and is asked what she feels is a challenge as he is aged out of public school. She states her biggest worry is that when he uses a public restroom, specifically a urinal that he lowers his pants to his ankles. She worries if another male would happen to be in the restroom of how this would be perceived. The director of the school he was attending rebuttled in the next clip of that there is and should be more training in this topic.

As it relates to me I at one time in my younger years had phobia of using the restroom, oftentimes having to be escorted by a male when needing the use of one. I garnered the knowledge to use a urinal by myself at a field trip in second grade,  where I pulled my pants to the ground, as I was quickly told by a peer this was not the proper norm when using a urinal. I was mimicked for some years by my peers, and it was even brought up in various banter in Senior High. Nonetheless, I got over it and I know it isnt the proper thing to do. In fact, the same peers that have mimicked me are now friends with me online and I don’t hold that grudge against them not one bit.

I have seen instances of individuals, although less functioning than myself, performing this behavior, This is a proper example of why we need male role models in a positive and ethical nature to guide individuals that are unaware of public practices, such as using a urinal so we do not have any incidents as this family member fears. I personally feel that there is no attraction for skilled and talented persons, let alone those of the male gender to work directly with those on the spectrum. There are some treasured professionals, however they are few and far between and they are needed intensely. Some hinderance is the hiring and training process, although the computer has made this easier to some degree. Nonetheless the sticking point with skill and tenure of individuals is that of compensation and rate of pay. This has to be enhanced in some aspect of there is to be a continuum of services for any given individual, as individuals on the spectrum are honed in their routine and constant need for consistency.

In the same token , there was an instance brought to light in the local media of a local adult training facility where a sexual assault occurred. Here are some combined snippets of that article. It is provided in snippet form as to protect the privacy of the entities involved, although it is public knowledge.

The alleged victim, according to the complaint, lives in a community home, suffers from several disorders, and is non-verbal. The suit stated he could be easily victimized because he considers everyone a friend, and stated he cannot recognize potentially dangerous situations. Attorneys for his parents wrote that the man must have individual supervision at all times.

The suit claimed on that May 7, the man was told to use a restroom by another client who was trying to kiss the man’s cheek while no employee was present.

The two were in the restroom for about 20 minutes, unsupervised, when the alleged victim was sexually assaulted by the other client, the suit claimed. The suit stated that the man screamed, but no

 

A short time later, an employee went into the restroom and brought both of them out, according to the filing.

According to the complaint, the alleged victim appeared shaken.

 

The complaint also alleged that an employee contacted the man’s community home to report that he bit his own finger, causing a self-inflicted injury.

However, when an employee at the man’s community home arrived for the man, the employee observed multiple injuries that could not have been self-inflicted. That employee believed officials were misleading about how the man sustained his injuries, the suit contended.

Employees at the community home also examined the man and photographed his injuries, noting he had lacerations and bruising to his ear, a hand print to his back and bite marks and bruising on his head, legs and chest.

 

The man was transported to the hospital and examined in the emergency department where it was revealed that the man was bleeding from a bite to his genitals, according to the suit. Hospital personnel contacted state police, who are currently investigating the incident.

The complaint states that the day program failed to supervise the man, failed to promptly report and provide care to him and failed to notify the authorities.

While I am going to leave my opinion to the court of legal judgement. I am going to say this, individuals, whether on the spectrum or not have to right to like who or whatever they want, its called equality, and whether or not we want to face it is an ever evident issue no matter whether it is the autism, mental heath, substance use or intellectual disabled community.

What the issue lies in individuals that want any kind of activity, it must be made in terms that the individuals understand that consent must be acquired before pursuing such activity. And while in this specific incident,  there would have been no way to garner consent, nor was this the place for such activity. We must come to reality that individuals with disabilities have thoughts, feeling and views that are not of the traditional mom and pop values as the world did grow up. We must be forerunners in ALL needs of the disabled community as a whole, including individuals on the spectrum.

Likewse ASERT, the commonwealth of Pennsylvania’s leading Autism Gateway has begun a campaign this year entitled Be Safe: Ask, Listen, Respect. This campaign promotes the idea of body autonomy for individuals with disabilities. Many individuals with disabilities require support with intimate areas of their daily life, requiring physical support from family members, caregivers and support staff. An important prevention strategy is teaching individuals that their body is their own, and they have a say in what happens to their bodies. Therefore, ASERT has created a pledge for family members, caregivers, support staff and other professionals to take in order to promote a safe and positive environment for all individuals.  We will shine a light on this in tomorrows post

Autism Acceptance Month – Day #15: Bullying, Abuse and Grooming by Trusted Adults

Continuing on with the daily discussion for Autism Acceptance Month, we will be talking about one’s independence and how it is for me and what I want and dangers that are out there. This will include topics for all ranges on the spectrum.

Recently,  I have seen an ad on Facebook for a “listening” system for low-verbal and non-verbal persons ont the spectrum. It realized the true reality of abuse by trusted adults and how commonplace it is. The example provided is that this mother purchased the device for her son who was transitioning out of public school and into a day program. She listened for the first time and discovered audibily that her son was being verbally abused to the point he was screaming “Call Mommy.” She came to the rescue and removed him from the situation.

With that ad on Facebook, it brought to light the instances of abuse by trusted bullying, Abuse and Grooming by trusted adults. I have sometimes been a victim of all three during my childhood. However, I have garnished the street smarts in my adulthood to defend safeguard myself from becoming vulnarable.

Looking at bullying, I have never been truly bullied as an adult but according to my last two posts of cyber and physical and mental form. Oftentimes individuals on the spectrum take things literally and as a result I get bullied from time to time both at my day program and in public. Another instance is where another individual spoke out for herself in a public forum and when I was asked for the opportunity to voice my opinion, in which I believe could make her case better, I was shut down by her saying she didnt want to hear from me. One last instance was when I made a nonsence jerk and a bout of laughter at that same day program a week later. Another individual (not mentally well) told me to “shut up” and ” what the f*** was so funny” It hurt my feelings to the point that I didnt want to return to the program after the Christmas Break, which I have been a part of this program since I graduated from High School. While I brushed off the first and last instance I provided, I cant seem to fathom why none of the staff stood up for me in the middle instance. Anyway the individual from the latter instance no longer attends the program, providing some relief. However, taking things literally is something I continue to struggle with constantluy

As for abuse, I have been abused throuhgout Junior High and the occasional corrective hit or two by my parents. It has been tramatic for me to some extent. Addiitonally, there was a time where I had a direct care worker feel the need to restrain me when he felt the instance that I would strike him or cause bodily harm. This, along with other elements of the situation caused me trauma to some point, something that I continually struggle with. In fact, I can not frequent three business in our town of 8,000 that he frequents. One time he touched my backside in a supercenter. This made me regress in therapy for sometime. While he was charged with falsifying a college degree, he served his sentence in a program that resulted in that charge being expunged. In more recent years, he received an award from our local police department for subduing a would be robber in a convenience store. I was apalled, but everybody needs their fifteen seconds of fame and I have had a good share.

He was also a big groomer. While he worked with several individuals, he took a certain liking in me. I would stay at his house while my dad had cancer and was in the hospital. He would buy me things and buy me soda and other things to make me feel good about myself. We would go to restaurants alot to eat. I continually fear being unethical with other trusted individuals as a result.

In closing, we need to be evident of the abuse that could occur by those who cannot properly tell you all that occurs. Many individuals that cannot advocate have their parents who is indeed their best advocate and knows their child best. As for being independent, skills must be occured for an individual to know the difference between right and wrong and how and when to say NO!

Tomorrow, we touch on a rather sensitive subject, bathroom usage. While it is not extremely graphic, the post will contain some unique topics that are prevelent in those on the spectrum.

Autism Acceptance Month – Day #10 : The next step has gotten better

The Labrynith Center at Indiana University of Pennsylvania comprehensive and holistic approach to support IUP students with Autism Spectrum Diagnosis as they build relationships, gain independence, experience academic success, and graduate from IUP with the professional and personal skills needed to embark on a fulfilling life and career.

Labyrinth is designed to be a multidimensional program based upon best practices in college programs for students with Autism Spectrum Diagnosis and is committed to providing consistent and comprehensive services led by experienced faculty and staff.

The IUP Labyrinth model consists of four components that provide enhanced supports to IUP students. The components include a one-credit course taken each semester, academic and life coaching, supervised study sessions, and peer and faculty mentoring.

IUP LABYRINTH COMPONENTS

CREDIT BEARING CURRICULUM

The curriculum is comprised of a required one-credit course taken each of the eight semesters that the Labyrinth student is enrolled at IUP. Course content will be dedicated to the skill sets necessary for building relationships, increasing independence, academic success, and professional and personal growth.

ACADEMIC AND LIFE COACHING

Each Labyrinth student will meet weekly with an academic and life coach. Coaching sessions will address current academic standing, course requirements, time management, residential concerns, communication issues, procedural questions, and any other related academic or social concerns.

SUPERVISED STUDY SESSIONS

Each Labyrinth student will attend four hours of supervised study in the Labyrinth Center per week. These sessions will be supervised by coaches and staff in order to provide support related to good study habits and productive use of designated study time, with focus on current and upcoming assignments, examinations, and projects.

PEER AND FACULTY MENTORING

All Labyrinth students will initially be assigned a trained peer mentor to facilitate social understanding on the college campus. The two students will meet for a minimum of one hour weekly. Peer mentors will be closely supervised throughout the year by Labyrinth faculty and staff. When students reach their junior year, a faculty mentor will be identified to support their career-specific needs.

Following acceptance to IUP, students apply to the Labyrinth program. Students are encouraged to begin the admissions process as early as possible.

Autism Acceptance Month – Day #9 – The Community College and Autism

While I high School slightly consider attending community college, it would not be until I became privileged to bump into another individual on the spectrum that was in attendance at the school that would become my Alma mater.

It would be 2011, I would be not quite 26, but I would be privileged to hear at a Leader in Recovery award winner, of which I would be five years later receive the the designation for our attendance. He nor anyone was able to accept the award on his behalf but was tempted by hearing his story. While he was on the spectrum like myself, his upbringing wasn’t the most pleasant as he had to attend a special school, but he overcame the challenges and go to College.

The following fall, I was attending the comparison award ceremony for families at the college. I learned he was taking web Technology and that he was very successful. While his grandparents were bestowing the honor, he was in attendance because he was attending classes that day. I went home and creeped his Facebook and seen he had many similarities that I did. So i did my research and did find that Web Technology was very a very popular talent for individuals on the spectrum. In fact in high School, I did take a web design course and loved it annd also had an obesession for the website template features of Microsoft Word.

My decision was final one day when my therapist had the website for the school on her computer screen for the client prior. I told her I was Interested in going back and she was a big cheerleader in doing so. Furthermore, there was an local branch that I could attend for what couldn’t be completed online. So I began the process of filing for financial aid, application, placement tests, etc.

They’re are advantages to attending community college. The classes are generally smaller, even so at the branch campus where I had was only one of three students. The tuition is affordable, in fact my college was the lowest in the state. Financial aid was abound. I even got a scholarship and additional aid for books.

While I went part time, I did finish in three years and had to have proctored testing for math classes. I do regret not taking advantage of Disabilities services and accommodations, that could enhance my grade. Nonetheless I was successful, I did get to become a member of the Phi Theta Kappa Honor Society and did receive a medallion for being the top of my class.

This summer, I will have been out of college four years and I have contemplated on whether or not to go further. However I am placing that on the back burner for now as I am planning to take time for me this year. Tomorrow, I will discuss the autism related programs of larger Universities.