I’ve just joined Instagram about a few months ago. In fact the reason why I didn’t have such account was that I was running a 3 year old operating system and a phone that would barely handle iOS7. I got a new iPhone in June (5s, 16GB on a LTE network.) My first “SOS” for help from “adults” was in late that month when made the “#HopelessAutistic” on the sand, with a signature on the lower right, to claim a picture esque moment. When I noticed the two younger ladies doing something with their phones, I wasn’t sure where it would go.
So to be “ahead of the curve”, I posted it on Instagram, after registering an account.
The account had morphed into criticizing the Town government, selfies of hopelessness, and technology, mostly of telephony.
A reciprocal follower named patch_cord_pbx, a person, thing or it from the area (from what I can gather) asked me this recently:
“[Avaya’s IP Office] Server edition is crazy awesome @stevenclickford ,, your interest is great why don’t you work for telecom[?]”
I did not respond because I felt there was much needed story to go without posting it all on Instagram.
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Here’s the story: When I was about 18, I was becoming more open minded to the world around me, trying to be tolerant to other groups and was open to new interests (even to silly things like music.) While this may surprise the people around me, this was what I had in mind at the time -circa 2005 even if I said or didn’t say it out loud.
I had a really rough life in terms of getting third party support (such as DSPs, or caretakers, etc.) because the school district would only support the day program from the 9:00 to 3:00 schedule, and the only off hours support they’d pay was the psychological therapy – which all would become a colossal waste at the end of the day.
As many families have learned the hard way, The Moore Center (the infamous area agency serving several communities in and around Manchester) is nothing but a glorified charitable organization in the marketing sense, even though legally they are the Area Agency serving the greater Manchester region. These people could care less about the individuals and at times I perceive them to exploit their own clients for their own gain.
Because The Moore Center has a well established, negative reputation, I’ll quickly move on and explain the rough experience as a high schooler. My mother was unemployed for a year (freshman year), she went there, they said “you make too much money, go to Social Security” They asked her do you need respite? Mum responds that she’d have Gram watch over me and have her pay herself. They never offered to say, “we could do that, and here’s how” When I was about 18 to get long term services they said “wait till he’s about 21.”
Unfreckin believable!
I would go into intake just a month after I turned 20. Basically 10 months of anx of not sure what my future was going to be.
Most individuals with critical special needs graduate on their 21st birthday, and whatever day that is, is when the school system finally completes it’s service and whoever wants to “cutover” from another service is the individual’s/family’s agency’s responsibility. In other regions like Nashua for an example, the Nashua School District will notify parents as soon as the child is 18 or so to request a consent to send private data to that area agency to begin the process. The Manchester Area Agency in 2007 did not do that, and I would not be surprised if such standard operating procedures have remained unchanged.
At 18, I choose to be my own guardian, whether or not that was the right path is still unclear almost in 2016. I did this for “optics”, because if I looked like the “adult in the room”, maybe I could get freedom like an “adult”. However, I was in this “sticky situation” where in some cases “I was my own guardian, but was under 21” and I was basically still treated like an underage student.
I never believed in my “rights” and never took any advocacy from any of the local legal groups. To be quite blunt, I never believed in the “Safeguards for a Child’s education” was BS.
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Why am I not in a career or job?
Early on, I knew I wouldn’t have the life “like everyone else” but maybe the school program could give me some AP lessons – enough for life. (this goes back to the role of a medical doctor or EMS’ need to “stop the bleeding”.) I cannot explain why I got such bad education (remember I’m in Massachusetts within the state line, and even when I can literally see NH, I’m bound by the Beacon Hill slavery of excessive regulation.)
I wanted more in my life, I knew I was able to work, if I just kept my mouth shut and did it But what had happened was, I was in a class of seven students. All with their own needs. And because of privacy reasons, you couldn’t ask things like “why is he getting those classes and I don’t?” My old friend and now ex who I’ve not spoken to in almost 4 years was getting everything he wanted, I’m talking about C++, Object Orientation Programming and even got support many years later of the same teacher and went to Middlesex Community College and even has a girlfriend.
But he allegedly has Asperger’s Syndrome, and I have PDDNOS. Why do I compare? Because some consider PDDNOS “mentally retarded” type of disorder. I honestly do not know why – even though the laws protect what I wanted. It could’ve been my weak advocacy or just how messed up the Commonwealth is in terms of services. (I actually think despite how brutally horrible it is to live in NH, it’s better than being in Massachusetts.) But I was taught by professionals to say “yes ma’am” on everything. Question the Masters or even worse Doctor’s of Education would result in verbal reprimand, or worse be haunted for eternity.
So about the time I was graduating, and realized that I may not be able to get services in a timely manner (actually was right on target with the state average of 16 months on the “wait list”) I felt maybe I need to downplay myself. It also didn’t help matters where The Moore Center was relying on a false diagnosis of my late pediatrician who recklessly put “Asperger’s” and when I told them it was wrong they defended themselves and said “We were just following what the doctor wrote.”
On the very first Service Agreement, I actually had people take off various interests that came from the “Forever IEP”, which I called it, basically future-proofing my life because the IEP was biased with the “worst case scenarios” to get as much help as possible, because whatever my functioning abilities is, I will always need help. (And it wasn’t false ether.) The reason why I did this was so I could look “needy” because being too “normal” in Manchester was not going to go forward that well. I hate to be so crass, but I was “playing stupid” for a while.
The first work program was very intimidating. What didn’t help the matters was that I was in a “traditional” system that wasn’t a client directed services system, where all negativity is the focus, a single vendor with a single goal for 30 hours a week. The family has zero control of budgeting, changing the contract or even checking off vendors to issue the RFP.
Regardless, this vendor called Work Opportunities Unlimited was not the right fit from the beginning. I felt like a misfit. I would be too risky but also too good, and I personally felt I was right in the middle. I did not appreciate how the manager was inflating my ego of being a genius, when I basically counted the 30 hour a week by 5 days very quickly in the first meeting. It was quick thinking of something similar schedule to school, not like an Asperger’s type who can be the human calculator.
One of the few intelligence I have is the senses of people and inferences, and subliminal messaging. I can tell when they’re inflating my ego and worse, messing around with me. The opposite to this would come off as naive. The song of “I don’t give a damn about my reputation” was basically ending and what I needed to do was to protect my reputation every hour in the day, and learned the hard way that being negative was how you have to move forward in life. WOU also was a program that is a for profit and they claim that the for-profit status is so they can get a tax-writeoff when they have successful employments. Is that really necessary, they have to make “profits”? Whatever that means…
The program was entirely virtual which meant there was no physical location to comply with Concord’s perverted view of “Community Based Services” which means one has to literally be in the community for at least 30 hours a week.
Yeah, good luck to that.
So I spent a lot of time at one of the local libraries. Staff would enter client information on their own laptops using insecure wireless “hotspots” (as the staff would say) but also on insecure Sharepoint portals – even worse. The program seemed to have good intentions, but maybe for someone who was normal and got an acquired brain injury, but with someone with significant problems at birth, yeah trying to make them work in a white collared environment and be called out for being immature type of treatment was not going to work. This goes back to “living off the specification sheet”
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Unemployed, Underemployed, thank you Insecurities!
The biggest problem was growing and growing insecurities. If you couldn’t tell already, I’ve got a lot of insecurities. This is probably why I’m “stuck”. Phrases like I’m “not good enough”, I’m too talented, “too smart” or even worse I’m pretty dumb. Again its all about protecting your reputation 24x7x365. People admire the stuff shown below, but I am basically a low level techie.
https://stevenclickford.wordpress.com/?attachment_id=55
It’s not to say I could learn to code, or figure out Linux, but the problem is technology is not taught to “dummies”, and I get lost in CLI environments because of the flat text and various un realistic shorthand commands. When it comes to coding, I can have a case of dyslexia. And to be honest, I use the keyboard much more than a mouse, unless I really need to. GUI is often misunderstood as a mouse-dependent UI, but when I can see things visually in various colors, various dimensions, and various sizes, it makes me understand how to use computing better. But I am too stupid to make such intelligent comment.
I do believe people have inflated my abilities to the point where I am “too good to fail.” What is strange, for an example in telephony, I know what SIP does, how SIP works, I know its internet port of 5060. But when you put me to a terminal session, I can never get a SIP system to work because I can’t speak to a terminal in the same way my mind can process the dial plan, network setup or what. It’s that missing piece that can solve a problem I can’t do presently. We can discuss colleges and the lack thereof of adult special ed for another day…
So basically, the reason why I’m in a place of where I am is because of really poor supports, conflicting messages, trying to do the right thing by modeling other peoples behaviors, too many talents, and not narrow minded enough which resulted being punished for being too “high functioning” when it was not even close to the truth. Lack of effective communication, not having the willingness of taking new clients, and focusing on “labels” over realistic abilities is the reason why I am still in a rock and a hard place.
And not only that but a government that is so oppressive in regulations where my own high school teacher wasn’t able to teach because of all the paperwork to file with the Mass DOE for “compliance” purposes really hurts every child in any state that encourages such oppression.
Even though my current support system is much stronger year over year, the problem is to change the mindset. I’m due for my Service Agreement renewal, and I don’t know how to do it in a “new” way because we focused on really unattainable, unrealistic “big picture” goals in the first 3 years. CDS in a nutshell is on “little things”. This will be my second time doing the “new” way which is literally “simple” which I walk out thinking “how can that be so easy?” Also I’ve been indoctrinated in the special ed system of “Steven must do X for every Y times for the next quarter” or I would do a review of where I was in the last year in these meetings”
My new case manager is very razor thin focus. How can I change like that if I came from a system that was only about the “big picture”? I also was criticized in my 2006 psychological evaluation for “not understanding the ‘big picture’ and getting ‘stuck’ on” little things. So I learn from that error, and where have I gone? Mostly nowhere!
This is the reason why I have felt that I needed to educate the people in this state (my state – your state) that there has or is a problem, and in order to have much successful stories, you must address the problem and stop making individuals be so creeped out to their own skins and having to defend their reputation all day long. If the system was so “progressive” then why is there a handful of people “regressing”?
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