Monday, October 5, 2015

Why Do We Send Teens With Autism To School?

Before you read this I am going to ask a favor, stay calm. You might even want to put your hand under your chin to catch it when it drops, in the event these comments shock you. 

I just heard this "Your son is never going to be independent, so why are you so concerned about him working? He's never going to be able to hold down a job. I mean he can't get seem to get by without one to one support. Are you sure it isn't a waste of time and you're not just pushing to have him learn things he will never really use, and maybe doesn't even care about?. I mean I understand your wanting the best for him, and that's great, but how do you know you're just not wasting both of your time chasing a life he will never live?" 

I was frozen for what seemed like forever, and I fought to push away the tremendous greif I felt hearing her words. I didn't feel angry because I really did hear this persons compassion, albeit misguided and uninformed. 

Finally I said, because he deserves as much opportunity to live his best life as anyone else!!. Then I just starting rambling and it went something like this. From the day our kids are born we start thinking about school. Why do we send our kids to school? To learn, and why do we want them to learn? So they can get a job. And, why do we want them to get a job or have a career? We want them to be able to survive, care for themselves, make friends, take pride in accomplishment and have purpose, both of which society tells us will bring happiness. We want the best for our kids. I want the same for my son and he deserves the same. There are many people who are not living quote "Successful" lives in this world who no one questioned their right to have access to learning all they could, and exposure to opportunities. Nick is a unique person, with skills and talents and he deserves the opportunity to build the most independent life he can. So that's what I am fighting for. And if he is never able to do it alone, so be it. At the same time everything he learns to do, everything that makes him more independent, gives him an opportunity to contribute to society and reduces how much financial support he will need from me and state and federal resources. 

In a nutshell, Nick being given the opportunity to be his best is the right thing to do on a human level, and it's the right thing to do on a financial level. 

Saturday, October 3, 2015

Man Ripped Teeth From Autistic Boy 4 Year Old Boy

If only all dangerous people, or strangers had a "Look".  I have no idea how I will successfully teach my son about strangers, how to recognize dangerous people much less explain they can do things like this!  Heck this guys looks like Matthew McConaughey!!! Seems a nearly impossible task. 

A Pennsylvania man was charged with assault this month after his girlfriend’s 4-year-old autistic son was found with three of his teeth ripped out.
Following a three-month investigation, NicFOX29 reported.
holas Kernechel, 27, was arrested on Sept. 17 on charges of aggravated assault, simple assault and endangering the welfare of a child,
“The teeth were recovered, they were intact from the root to the edge of the tooth,” Montgomery County District Attorney Risa Ferman told CBS Philly. “They were bloodied. And they have striations on them that would indicate that a tool of some sort was used to remove them from the child’s mouth.”
"[The teeth] have striations on them that would indicate that a tool of some sort was used to remove them from the child’s mouth”
- Risa Ferman, Montgomery County DA
Kernechel is being held on $100,000 bail and is scheduled for a preliminary hearing on Oct. 1. Neither the boy nor his mother is being identified.
Kernechel was allegedly asked to look after the boy for a few hours in July while the child’s mother was away at work. Kernechel left the boy “in his bed, bleeding and crying and failed to tell his mother about the injuries until she returned to the apartment in the early-morning hours,” police told FOX 29.
The mother went to police, holding the boy’s teeth in a sandwich bag, according to the Morning Call. When police responded to the apartment, they found blood splatter on the wall next to the bed, on the sheets, pillowcase and floor.
The boy told cops Kernechel “hit and take [the teeth] out,” according to the Morning Call. He allegedly told detectives about other, earlier injuries, too, including bite marks and bruises to his arms.

Thursday, October 1, 2015

Unexpected Dangers for Nick on the Road to Independence

Don't eat raw meat! 
Just uncovered another of the seemingly never ending dangers facing Nick on the road toward independence (or his definition of it).  Nick doesn’t know raw food is dangerous and you don’t eat it! 

Nick stood in our kitchen, went in the refrigerator, pulled out bacon and started eating it, RAW, and no one even noticed. His behaviorist, was right there and didn't see or say a thing. His sister walked by and screamed “Stop”, horrified at seeing the raw meat hanging out of his mouth. Thank goodness she caught it.

I’m still a bit freaked out. I'm not sure if the most upsetting to me was that I had never thought about it, or the realization of all the things he has yet to learn.

We all know bacon is one of those meats you can't eat raw! Eating uncooked bacon exposes you to bacteria as well as parasites and can cause either bacterial infections or trichinellosis, also called trichinosis, a parasitic infection.  Nick already has gastro challenges, can't imagine adding this to his problems!

Moldy bread is a good place to start
Next up teaching Nick about bad and raw food, which is not going to be easy. There are lot's of raw foods we can eat, and others we cannot and they lack any consistent reason why.  I think I'll start with teaching about bad food, because it can be easily created and introduced one food at a time and my refrigerator seems to produce an endless supply! 

Tuesday, September 29, 2015

Child With Autism Disrupts Broadway Show - Star Response Surprises People

Broadway Star Takes a Compassionate Stand After Child With Autism Disrupts His Show


Kelvin Moon Loh is seen backstage at the St. James Theatre in this file photo, Nov. 17, 2014, in New York.

Theater goers might think it's the cast of the show that's outraged by a disruptive audience member. But in the case of Kelvin Moon Loh, who is currently in Rodgers and Hammerstein's "The King and I" at Lincoln Center in New York, that wasn't the case at all.

In a Facebook post from Wednesday, Loh writes of an incident that took place at the afternoon matinee.  It starts out, "I am angry and sad." The post has been shared more than 6,000 times so far.

"I am angry and sad. Just got off stage from today's matinee and yes, something happened. Someone brought their autistic child to the theater.
That being said -- this post won't go the way you think it will. You think I will admonish that mother for bringing a child who yelped during a quiet moment in the show. You think I will herald an audience that yelled at this mother for bringing their child to the theater. You think that I will have sympathy for my own company whose performances were disturbed from a foreign sound coming from in front of them.
"No. Instead, I ask you -- when did we as theater people, performers and audience members become so concerned with our own experience that we lose compassion for others?
"The theater to me has always been a way to examine/dissect the human experience and present it back to ourselves. Today, something very real was happening in the seats and, yes, it interrupted the fantasy that was supposed to be this matinee but ultimately theater is created to bring people together, not just for entertainment, but to enhance our lives when we walk out the door again.
"It so happened that during 'the whipping scene,' a rather intense moment in the second act, a child was heard yelping in the audience. It sounded like terror. Not more than one week earlier, during the same scene, a young girl in the front row- seemingly not autistic screamed and cried loudly and no one said anything then. How is this any different?
"His voice pierced the theater. The audience started to rally against the mother and her child to be removed. I heard murmurs of 'why would you bring a child like that to the theater?' This is wrong. Plainly wrong.
"Because what you didn't see was a mother desperately trying to do just that. But her son was not compliant. What they didn't see was a mother desperately pleading with her child as he gripped the railing refusing- yelping more out of defiance. I could not look away. I wanted to scream and stop the show and say- "EVERYONE RELAX. SHE IS TRYING. CAN YOU NOT SEE THAT SHE IS TRYING???!!!!" I will gladly do the entire performance over again. Refund any ticket because for her to bring her child to the theater is brave. You don't know what her life is like. Perhaps, they have great days where he can sit still and not make much noise because this is a rare occurrence. Perhaps she chooses to no longer live in fear, and refuses to compromise the experience of her child. Maybe she scouted the aisle seat for a very popular show in case such an episode would occur. She paid the same price to see the show as you did for her family. Her plan, as was yours, was to have an enjoyable afternoon at the theater and slowly her worst fears came true.
I leave you with this -- shows that have special performances for autistic audiences should be commended for their efforts to make theater inclusive for all audiences. I believe like Joseph Papp that theater is created for all people. I stand by that and also for once, I am in a show that is completely FAMILY FRIENDLY. The King and I on Broadway is just that -- FAMILY FRIENDLY - and that means entire families -- with disabilities or not. Not only for special performances but for all performances. A night at the theater is special on any night you get to go.
"And no, I don't care how much you spent on the tickets."
Commenters on Loh's post were overwhelmingly supportive:
"I wish you guys would have stopped your set in support of the mother. She should never have had to leave the show because of those in the audience who disapprove of her child. Instead those other close minded people should have been forced to leave."
"Feeling all the feels. Just beautiful."
"Your perspective is a beautiful reminder for all of us to live with compassion and empathy for ALL PEOPLE."

And another simply wrote, "Bravo."

Monday, September 28, 2015

Study Questions Effectiveness Of One-To-Ones In Special Ed

Having experienced this first hand, this report comes as no surprise to me.  Once again, if we don't monitor the resources we fight so hard to get they can easily be an expensive waste. Sad, but not surprising. 

Study Questions Effectiveness Of One-To-Ones In Special Ed

One-to-one assistants spend far less time engaged with students as compared to teachers and classroom assistants, a new study suggests. (Nabil K. Mark/Centre Daily Times/TNS)
One-to-one assistants spend far less time engaged with students as compared to teachers and classroom assistants, a new study suggests. (Nabil K. Mark/Centre Daily Times/TNS)
Many students receiving special education services are supported by one-to-ones, but new research suggests these assistants may not be pulling their weight.
A study looking at how one-to-ones spent their time in nearly four-dozen autism support classrooms finds that paraprofessionals are engaged in instruction or support just 57 percent of the time.
By contrast, teachers were engaged in such activities 98 percent of the time while classroom assistants were involved 91 percent of the time.
“The low rate of one-to-one assistants’ engagement suggests an inefficient use of an important resource,” wrote researchers from the University of Pennsylvania, University of Washington and the University of California, Riverside in their findings published online this month in the journal Teacher Education and Special Education.
The findings are significant, researchers said, because one-to-ones are the fastest growing group of special education staffers.
For the study, researchers looked at 46 autism support classrooms serving students in kindergarten through second grade in a large, urban school district. All of the classes included a lead teacher and a classroom assistant, but the number of one-to-ones varied from none to 16. Engagement among the professionals in each classroom was assessed through monthly observations over the course of a school year.
Overall, one-to-ones were engaged slightly over half of the time. When they weren’t busy, however, about a third of one-to-ones “spent their time sitting without students or material involvement,” the study found.
Significantly, the findings suggest that one-to-ones perform better if they work alongside a highly-engaged classroom assistant.
Researchers said the relatively low level of involvement among one-to-ones could be a sign that they are poorly trained on how to work with students or that classroom teachers are ill-prepared to supervise such staff. What’s more, the researchers said that one-to-one engagement may be the result of a fragmented service system in which it’s often unclear who is responsible for training, supervising and evaluating these employees.
“In an era of increasing utilization of one-to-one assistants, there is an underlying assumption that expanding their use is necessary and desirable. The lack of engagement observed in our study raises concerns about the effectiveness of current models and may be symptomatic of broader challenges related to the delivery of special education services,” the researchers wrote in their findings.

Tuesday, September 22, 2015

Being Invisible is Deadly; 19 Year Old with Autism Left on School Bus Dies.

“I feel like, we are nothing," she said. “They killed my son. Technically, they killed my son.”  Eun Ha Lee

It’s taken me days to respond to this horrifying event, because every time I think about it, I hear his mother’s words “I feel like, we are nothing," “They killed my son. Technically, they killed my son.”

The reminder of how vulnerable our kids are, and how easy it is to neglect them and how fatal the consequences can be, was just too much for me to take in.  When Lee’s mom through her tears said "We live in a tomb now." I felt her grief and all I could think was by the grace of God go I.  

Reading he was probably just following directions drilled into him over the years "Wait until someone comes to get you" hit too close to home because my son has been "trained" in the same way. Training that is good and often all we can offer, yet in this case may have been a factor in this young man losing his life, left me feeling vunerable in a way I never had before.

Again, families I say” be afraid, be very afraid”. Not because we want to live paranoid, but because the fact is our children face all the dangers any child faces in the world nd more. Dangers from all angles. Last week Nick started eating raw bacon! Raw Bacon and his aid didn't notice. Until that moment I didn't realize the degree of Nick's lack of food safety, which could have dire consequences. 

Our schools, systems of care and communities alike are all working to include the growing autism population and the truth is the process is not perfect, it is flawed and full of gaps, and who knows how long it will take to build infrastructures that support this population, if ever. 

As parents and caregivers we know the dangers don’t stop as our children mature, but persist keeping them are risk throughout their lives. So it’s on us to make this a safer world for our kids. I’m thinking the more I do know the better it will be when I am not here to watch over him. Don’t get me wrong, I know there is no way we can ever be sure our children are safe, typical or special needs. We can’t guarantee anyone’s safety, that’s in the hands of a higher power and it is a concern all families and caregivers share. The only thing we can do is take every precaution to keep them safe. We can learn from the tragic death of Hun-Joon Lee and double check all our personal protocols and the protocols of the people who serve and support our children. This way if any of us are met with a tragedy of this magnitude, and the fact is some of us will be, we will know we did the best we could and we will not add the weight of regret to our already burdened shoulders.

My prayers go out to this family. 

Monday, September 21, 2015

Nick’s Working!!!!!!! WooHoo and Thanks LAUSD for working this out.

Nick’s Working!!!!!!!  Sitting in class, reading and working the common core wasn't getting Nick closer to independence. No matter how much he learns seems to me if he can't apply it toward a job or independence, well it's not worth much.  

Been trying for sometime to create a program that would give Nick the opportunity to apply what he has learned and finally we've done it. WooHoo and thanks LAUSD :) 

Tuesday, September 8, 2015

Best States for "Aging Out"; From Promoting Independence and Productivity to Quality of LIfe

Seems to me California would do pretty good for 2 - 6 year olds. Then we drop a notch from 11 to 15, and another drop from16 to 18. Then we plumet to the bottom of the list when our kids "age out" between 19 and 22.  Sad there's so little in place in California for our young adults. 

Sunday, September 6, 2015

Do You Live In 1 of the 10 Best States For People With Disabilities?

The 10 Best States For People With Disabilities Was A Surprise to Me! 

I expected California to do better. At the sametime I've been watching families face more and more challenges identifying and getting services. Frightening. Maybe a move will be in our future.

Eleanor Goldberg 
Impact editor, The Huffington Post

So, what does it take for a state to foster a comfortable and safe environment for people with disabilities?
According to the United Cerebral Palsy’s most recent ranking of the best states for people with disabilities, there are five distinct categories. It requires promoting independence, keeping families together, encouraging productivity, reaching those in need and tracking health, safety and quality of life.
The 2015 Case for Inclusion report came back with some disappointing figures. Waiting lists for residential and community services remain high and unemployment rates have increased among this demographic. 
In just eight states, 33 percent of people with disabilities have competitive employment. That’s down from 10 last year.
Still, a number of states have made some marked improvement, and these are the 10 best for people living with intellectual or developmental disabilities.
·         10
Ohio "dramatically" increased the number of individuals and resources committed to serving the disability community and cut the number of people being served in large institutions by more than half, according to the 2015 Case for Inclusion report. It rose from No. 48 in 2007, to No. 10 in 2015.
·         9
South Carolina
The report found that improving conditions for people with disabilities doesn't necessarily require enormous wealth. South Carolina was the 44th poorest state, based on median income, yet it was No. 9 in terms of quality of life for people with disabilities. 
·         8
Washington, D.C.
Washington, D.C. is one of 14 states that reported having no state institutions that seclude people with intellectual or developmental disabilities. 
·         7
Minnesota is among 14 states that offers support services to a large number of families caring for a relative with disabilities. Such programs allow families to stay together and enable people with disabilities to live in a community setting, according to the 2015 Case for Inclusion report. 
·         6
Colorado is one of eight states that are top performers in the “home-like setting standard" category. That means that 80 percent of people with disabilities live in their own home, a family home, or group setting that has fewer than four residents.
·         5
Hawaii is one of 10 states where at least 10 percent of people with disabilities use self-directed services, according to the 2015 Case for Inclusion report. That means they have more control, and are more involved in decision-making matters, when it comes to their Medicaid services. 
·         4
New York
Since 1960, 220 state institutions have closed. By next year, 16 more are expected to be shuttered, which include two in New York. Activists often argue that such large institutions segregate people with disabilities from society and also aren't cost efficient, Amber Smock wrote in a blog post for American Association of People with Disabilities. 
·         3
Missouri jumped from No. 41 in 2007 to No. 3 this year by increasing the amount of resources allocated to people with disabilities and closing six state institutions, among other noteworthy improvements.
·         2
Maryland is one of just eight states where at least 33 percent of people with intellectual or developmental disabilities are working in competitive employment. That’s down from 10 stateslast year, according to the 2015 Case of Inclusion report. 
·         1

While Arizona ranked No. 1 overall, the 2015 Case for Inclusion report called on the state to still work toward making the state even more accessible for people with disabilities by promoting productivity, a category it came in at No. 41.

Thursday, September 3, 2015

Families Fight the Greif that Keeps on Giving; Emotionally and Financially.

I know I look and sound like Chicken Little, running in circles screaming "The Rates Are Falling. The Rates Are Falling!!!!!" and "The system is collasping and a catastrophy looms ahead!!!!!".  Nonetheless, I keep screaming because I am scared for my son. I am angry when I think about what will happen because we as a nation are making careless, short term decisions.  

But thank goodness I am not alone. If you have not heard me, maybe you can hear the three voices below.  As always thanks for the comments. 

  1. Poverty wages for those who change lives, meanwhile Jeb Bush was paid $1.3 million to funnel federal (FEDERAL) funds to the Lehman Brothers investment company in Florida. Footnote, the Lehman Bros. failed, taking all those federal funds that could have helped thousands of individuals with autism down the drain.
  2. AnonymousSeptember 1, 2015 at 9:41 AM
  3. Hope you get a big support group, This group is majority with growing cases yearly. Wonder if it affects any politician personally. Election Day should align with your causes and belief. People need to be proactive.
  4. Even after 6 years of supporting individuals with developmental disabilities, there was no way for me to support myself, let alone support a family. To me it seemed like every year I would just see less and less. It came to a point where I had to decide on caring for my own family or to give support to these individuals.