Friday, January 13, 2017

Speechless on ABC- a definite much watch

I waited awhile to talk about the new comedy on ABC, which details the lives of an iconoclast family that includes among others, a teenage son, JJ, who happens to have cerebral palsy. The title "Speechless," comes from this particular character's inability to speak. More importantly however, it's also about how even if you are nonverbal you can still be heard loudly, and clearly.

This show hits on many issues that those of us who live in special needs families deal with on a daily basis. The season began with the mom fighting to get JJ the appropriate access and accommodations so he could attend the local public high school. There was the discussion about how moving into the richer neighborhood will get JJ a better education, and the family's other two typical children as well. But it brings to mind the fact that across the US, education is haphazard. While there is a basis in federal law, the IDEA, we know that every state can, and does, interpret the requirements differently.

In fact, at present there is a case before the Supreme Court to finally decide what does it mean by a free and appropriate education (FAPE). Some courts have held that FAPE means that the school needs to address a modest education, while others say all the districts have to do is address the medical or special needs of the child. The court seems to understand that each child needs more than a "modest" or basic education, but are at a loss on how to handle it, or pay for it. HERE However, one of the plaintiff's lawyers rightly points out that the law doesn't become dormant because of the cost of educating a special needs, or disabled individual.

Now we all know the anxiety that actually talking to the school about your child's needs can cause. Days, or even weeks, before yearly IEP meetings, we all lay in bed going over and over any scenario that we might have to argue about why our child may need, and in fact, are entitled to a particular support system.

Here is another one of my favorite scenes where the mom, Maya, played by Minnie Driver, is actually arguing with the principal of the high school about JJ's supports. But the funny thing, because after all it is a comedy, is that she doesn't let the principal get a word in edgewise. In fact, the mom plays both parts in the argument, argues both sides, much like we do when we argue with ourselves right before our children's yearly reviews. Of course, at the end of Maya's "argument" with the principal, the school concludes that JJ will get what he needs without question. The principal is so dumbfounded that she smiles sweetly and relents.

Sadly, we all know that, that is not the usual situation. You can argue till you turn blue, and many times the school districts will not do what your child needs in order to succeed. That is in fact why today's case before SCOTUS is so important. Hopefully they will set out a standard of care that every district has to follow when it comes to our children. And hopefully that standard will treat our children with respect as the fully capable students that they are, and not only allow the schools to see their disability, but demand that school see them as human beings first and disabled second.

But I simply loved how what Maya did was what I did for decades right before my sons' IEP meetings. In fact, today I even deal with issues, or quandaries, when we have to talk to people about their support and their rights. I will be driving in my car, and I will will be playing over and over in my head conversations, and arguing with myself out loud to the point that many times I get asked what is wrong? I laugh of course, because I know that I am simply being anxious. But I am also glad to know that I am not the only one who does this, or this parental idiosyncrasy wouldn't be portrayed so prominently in this comedy.

Meanwhile, what you see in this comedy is how the family handles one issue after another. And they do not neglect to show how the typical siblings handle JJs issues, or in fact how much time the parents need to give JJ instead of them. There is the resentment by the siblings, and then the guilt. In one episode JJ goes off with his aide, that of course the mom found not the school, to Disney, while the family has a day without JJ. The other kids want to go play paintball. Afterall, they don't do anything together in which JJ can't partake.

Well they go t paintball. They have fun. They are so excited to be able to do things like a "normal" family. But then they realize that what is normal for their family is just fine. Dylan (sister) and Ray (brother) are racked with guilt that they could have so much fun without JJ, and that at the time didn't even miss him. How the kids resolve who they are, and who their family happens to be is delightful.

But again, it is a real issue and real problems that typical siblings of special needs families deal with day in and day out. These children bear a lot of burden, and without a doubt are much older emotionally than their years would ever suggest. For information about how to support typical siblings in a special needs family start HERE or HERE. There are also psychologists, and programs such as Sibshop, that deal with the issues particular to these family situations.
There is also an episode where Ray during a family vacation has an appendicitis attack and the mom, is well prepared at the hospital. She not only knows every medical issue about him, but she has it filed, collated, color coded, and delineated as to what the doctors will find important. This is where Ray realizes, that his mom does not simply love and dote on JJ, but that she is on top of everything for everyone in the family and that without a doubt she loves Ray, too. He realizes that to his parents, and especially his mom, he is as important as his brother, and this actuality makes his day.

Now last nights episode, I think was one of the best. It showed how the family has to deal with, cajole, bargain,  and fight with the health insurance company to simply get JJ what he needs in order to function as a human being. For any of us who have had to deal with insurance companies, and the hours on the phone, plus the pushback, and the sheer distress of the red-tape, we know what it is like to know your child should be given X, and instead they deliver Y. Even in today's day and age, with Obamacare, and the ADA, our kids so often get the short end of the stick when it comes to services. So many of us live with the reality that if you can't afford it, and if the insurance company doesn't pay for it,  your child goes without, even if it is proven that a particular therapy or support program would make a difference in their lives and for their future. You cannot afford everything in life, and sometimes the choices are real, hard and distressful.

Another aspect of last nights episode was something that I find disability advocates talk about a lot.  They called it "inspiration porn." It states that disabled persons are not seen as human beings, but as one-dimensional characters only put on this Earth so able bodied people can feel good about themselves when they do the "humanitarian" thing and treat the disabled with respect. The show highlighted how so many of the able bodied only look at the disabled as a means to make themselves into better persons, instead of viewing the disabled as individuals in their own right.

An interesting segway in the show was how Kenneth, JJ's aide, who is African-American, pointed out Hollywood's use of the "magical negro" trope during a discussion about the cliches associated with the disabled. Kenneth explains that this character is usually represented as a folksy, barely literate character, with special magical powers or incite, that is used to help the white protagonist figure out the correct and noble answer to the film's perplexing issues, much like Hollywood tends to use disabled persons. On a funny note, the show ends, with Kenneth fading off into fairy land, with only his disembodied voice being heard,  basically an example of the plot device epitomized by the "magical negro."

It is a comedy afterall.

But the lessons for society are there.

Truth is, it is great to see what we deal with on so many levels in a such a lovely show. Everything is not dark, or traumatizing. Everything we deal with isn't depression. Yes we have bad days, but mostly we have good days. So many shows that have had a disabled character, like Parenthood, end up annoying. I did not like how autism, the autistic boy Max, the parents, or how so many of the issues were handled, and portrayed the longer Parenthood was on.

On the other hand, Speechless makes us laugh at ourselves. It takes issues that we deal with on a daily basis and turns the light on, in a funny enlightening manner. Just maybe, society is then being taught a valuable and effective lesson. That lives of special needs families are not sad, horrible, or depressing. Our lives are not something to be used as some sort of religious outgrowth. We are not to be pitied, or treated as the"other."

We are not here to teach, even though as I always say about autism awareness month, that every day is autism awareness day where the boys are concerned. You can't help it. They exist. They live their lives. So anyone dealing with them is getting a lesson in autism awareness whether these neurotypicals are aware of that or not.

Speechless shows that special needs families are here to live our lives with the same gusto, rights and joys as everyone other family. We are human and entitled to be a part of the world in which we live. But above all, this show teaches that our children are first and foremost human beings, not autistic, disabled, or special needs human beings, and the world is obligated to treat them with respect because they are human, and for no other reason at all.

Wednesday, January 11, 2017

Perfidy, Janus-faced, and the Reality of Modern Politics

What a difference an election makes. Apparently, the past eight years, when the republicans and conservatives continually chastised, upbraided, questioned, fought with and conspiracized about Barack Obama, are gone in a flash, down the lost rabbit memory hole. Somehow you are not allowed, upon pain of being called a traitor, a lair, pathetic, an Islamists (I kid you not), to question our President-elect. It seems that the honor and right of questioning our political class has now become an act of treason, equal only to the treason of the Rosenbergs. And oh, that particular antisemitic itch gets scratched continually too.
We decried the two-faced, double standard, antisemitic dog-whistle of “Israel-firster” meme fame, that the Obama administration employed against those that disagreed with them about their Middle East policy, most notably used against Obama's middle east advisor Dennis Ross. Interestingly too, it seems that if you disagree with our incoming President, you are not only an Israel-firster, but part of that Elder Cabal just waiting to suck the blood out of some unsuspecting Christian neighbor.
The paranoia and conspiracy contretemps of those who feel that any digression from worship, or acknowledgement, of the magnificence projected by their leader, has Trump adherents melting down as if they are adult versions of that spoiled toddler who is not being allowed candy, or their burning cross, before bedtime.  Of course, considering their icon, and his behavior, it is not surprising that they follow his behavioral lead, including not following social convention, or the decency rules associated with human interaction. And no I don’t think Trump is an antisemite. I simply think he is a batcrap crazy narcissist, who doesn’t particularly care about anyone but himself. Much like a two-year-old, he wants,  what he wants, when he wants it.
But the biggest surprise I faced, was the utter sheer disregard for the truth of the matter that Trump bullied and made fun of  disabled reporter, Serge Kovaleski. Not only have Trumpkins gone off the deep end, defaming Meryl Street because of her comments at the Golden Globes, but they have decided that she has no right to say anything to support the idea that the President of the United States needs to be a gracious, magnanimous individual instead of a classless, overbearing, boor of a bourgeois dilettante, because of her past support of Roman Polanski.
Truth there is no defense of Polanski, and sadly Hollywood does earn the moniker Hollyweird for a reason. The idea that you support a pedophile simply because you consider them a great artist is revolting. In fact, when the Hollywood community did defend Polanski, notoriously Whoopi Goldberg on The View actually saying it was not a big deal because it wasn’t “rape, rape,” they were rightly upbraided, chastised, and held to open contempt.
But simply because Streep has the bad taste, or is so totally clueless as to the truth of the matter concerning Polanski, does not mean she was wrong about Trump and his bullying of Kovaleski. The insanity of this interaction is that Trump supporters tried to tell me that he didn’t bully him because he was disabled, that Trump mocks everyone who disagrees with him that way. So their basic defense is that he was not simply an asshole to Kovaleski, he is just generally an asshole to everyone. Perhaps, in their minds eye this is some kind of positive point on Trump’s behalf, but I fail to see as to how his bullying behavior can ever be seen as appropriate.

Read the rest HERE

Friday, January 6, 2017

Another Aspect of Social Skills

By now we have all heard the horror story out of Chicago, about the autistic teen who was kidnapped and then tortured for two days. It is without a doubt one of the nightmares we live with. It is believed, that the victim went with the group because he knew one of them from school. He probably felt secure, and unafraid, due to the familiarity with that person.

So the issue becomes what do we do in order to keep our children safe from predators like the sociopaths in Chicago? I will tell you the truth....I have no answer. The older my sons have gotten the more I have feared a scenario where someone they trusted took advantage of them. That some predator will see a vulnerable human being, and harm them.

Recently hubby had even turned to me and wondered how do we keep the boys safe, after hearing about a robbery near Mr.GS1's office. "People are just evil," he said. Yes, his was an overgeneralization, but then again,  it is not the average person you need to worry about having contact with your child. It is that pathological individual from whom we all have to be protected.

It is the truth of the matter, that our autistic children are more vulnerable than their peers in this social situation, because they lack the natural protection of being able to read signals, body language and in general they have a naive, very positive look at the world around them. It is one thing to always think well of people. It is another to not know how to protect yourself, and see before you when a situation, or persons, may be a danger.

How do we teach our very trusting children to pay attention to those social signals throughout their lives that they are apt to miss? It is of course one thing to worry about the lack of social awareness in typical situations. It is one thing to need to teach your child manners (etiquette), how to interact with respect, take turns, even modulate their tone. This is simply teaching them how to navigate the times when they don't understand normal social convention. But beyond the everyday niceties that we find so important,  how do we teach them the signals that the rest of us learn about self-preservation?

Now MrGS1 learned at a young age that those you consider your friends may not be your friends. He had peers, who were supposed to be part of his support system, join with his bully-tormentors and partake in the abuse. He had been so alienated throughout high school by students in our town, that it took years at college before he even decided to open up and talk to other students. But even with therapy he was loathe to try to make friends. He may be safer that way. No hurt, and no harm. But it is not a good way to live in the longrun, and we are still working on getting him more integrated into life. Heck, even at work, while people are kind to him and understanding, they are decades his senior and no one exists there to simply befriend, and hang with.

MrGS2 on the other hand, never had the alienation and bullying issues that his brother dealt with, and never was leery of his peers. He did try to be socially adept at college, and even at graduate school. The issue we have here, is that he is trusting and not concerned enough about the people he talks to on social media. While he understands that there are predators in this world, and especially on line, he thinks he can spot them, and that he is smart enough to work around them.

In truth this is not only an issue with those with autism. We hear about the teenager who has met someone on line, and has run away, or the person who has a date from an online service, (men and women) then ends up being a victim of a terrible crime.

One of the first incidents of this kind, was a youngman in France, who had met someone on line and went to innocently meet her for a date. He was kidnapped and tortured to death by a group of  the date's friends, she was happily part of the conspiracy, because he was Jewish. There was no special needs situation with this young French man. He was trusting, and thought he knew the person on line well enough to meet her.

We can teach our children not to talk to strangers.
We can teach our children not to get into  car with someone you don't know.
We can teach our children that when you befriend someone, make sure that a family member has a phone number, a name, and an address where that person lives.
We can teach our children what to do in an emergency.
We can teach our children selfdefense, and where to run for help.
But what do you do, when the predator is actually someone they know, whom they trust, that is part of their circle?
But how do you prepare them, without scaring them, that not everyone who pretends to be your friend, is actually your friend?

I have no answer, except to try to get them to understand how they need to not trust everyone,  that everyone they meet is not their friend, and that even when people say they have your best interest at heart, some really do not. It is not a nice way to live. But it is part of the world in which we live. In fact, we all live that way in our world. It is something they need to learn to traverse as well.

Just another aspect of their confusing social world.

Sunday, January 1, 2017

Set a goal, but don't call it a resolution, then do it

I stopped making New Year's resolutions years ago. I realized that nope, not gonna keep them. So why make myself a liar?

But I think in retrospect, the good part of making resolutions is to take a detailed analysis of your life and figure out that one area that you can make better. Yes, we are all works in progress, and probably have more than one area that needs some readjustment. But really how much can we do at one time and do it well?

What I also learned is that the across the board idea of "loosing weight," or "going to work out more," doesn't really help you change your life for the better. What we need to do is actually be more detailed or more exacting about what it is we want to accomplish.

It's like what teachers do for our children in the IEP. There are overarching goals, but each goal is then broken down into more manageable parts. One goal can have ten steps to fruition. That way as you pass each subset of the goal, you can feel proud without having to wait for the final product.

Also make one goal. Just one. I know that our children may have many goals on their IEPs, and they have to work at every goal throughout the year. But for us, as adults, I personally think that we will be more successful if we hunker down and work on one thing at a time. Besides, when you work hard to accomplish one goal, there may be side benefits that will help us reevaluate what we need to work on in the future.

And one major point too...while New Year's goals are a social convention, it doesn't mean that you can't add a new goal in the middle of the year. If you happen to finish your goal, or even as you see that some of your subset reaches can be part and parcel of another objective, you can find a new achievement to work on.

So in the end. Pick one thing and break it down. Even pick an easy mark.

You want to eat healthier.
Start by saying "I will eat one piece of fruit a day." Then find a fruit you like and eat it.
After eating the fruit for a month, add in having a green salad everyday or every other day.
Then add in cutting back on bad fats.
Then add in good fats.
Figure that once a month you will change, for the better how you eat.
That way you will get used to the new tastes and be ready for the next one. Eventually you will find that you actually crave the better food and want to continue with your food goal. If you had changed everything all at once, that is when you slip back into bad habits.

And if you want to exercise add in that you will exercise for 15 minutes every day.
Or make it three times a week.
Increase it incrementally until you can do 1 hour of cardio 3 times a week.
Add in core work along the way. Do 5 minutes at the end of your cardio.
Over several months, as you up your cardio, increase your core work up to 15 minutes.
Then add in free weights or the body weight exercises to add muscle mass.
Go slow.
You will be more successful that way.
If you demand hours of exercise at the very beginning, you will not only become frustrated and quit, you will most definitely injure yourself.

See your goal as a year long exercise, where you are trying to simply change to a healthier lifestyle. So by the end of 2017, you will be successful.

Maybe you want your goal to be that you will begin blogging.
Pick a service you like.
Take your time to set up a site.
Also don't say you will post every day or even once a week. Look at it realistically and decide that you will post every other week or even once a month, and slowly increase your output. You will find the more you do it, the easier it will get.

Maybe you want to go back to school or find a new career.
Go to the online services like Coursera, or Lynda.
Try out different classes.
See where you can put your talents.
Take one class at a time, and see if you can slowly figure out a new path.
Don't rush into several courses at once.
If you fail, you will never know if it was because there was too much on your plate, or that you really simply didn't like the courses you took.


So what ever you plant to do, or whatever goal you decide to embrace, remember to go slowly, forgive yourself if you get distracted, and simply turn around and start again.

Friday, December 30, 2016

Happy New Year 2017

Auld Lang Syne was written by the Scottish poet Robert Burns in 1788. That's why the version I chose was played by the Royal Scots Dragoon Guards. You don't get more Scottish than bagpipes and the highlands. For more information about the history of this song go HERE.

Should auld acquaintance be forgot,                                
and never brought to mind ?
Should auld acquaintance be forgot,
and auld lang syne* ?

For auld lang syne, my jo (or my dear), for auld lang syne, we’ll tak a cup o’ kindness yet, for auld lang syne.
And surely ye’ll be your pint-stowp !
and surely I’ll be mine !
And we’ll tak a cup o’ kindness yet,
for auld lang syne.
We twa hae run about the braes,                                            
and pu’d the gowans fine ;
But we’ve wander’d mony a weary fit,
sin auld lang syne.
We twa hae paidl’d i' the burn,
frae morning sun till dine ;
But seas between us braid hae roar’d
sin auld lang syne.
And there’s a hand, my trusty fiere !
and gie's a hand o’ thine !
And we’ll tak a right gude-willy waught,
for auld lang syne.