Saturday, October 30, 2010

I Will Speak Out and Educate On Behalf of Autism November 1 Join us @TheCoffeeKlatch

Friendships are something our children do want and our children do need. In fact I would even postulate that it is something all on the autism spectrum need or there wouldn’t be that outpouring of attention to social media and Internet interaction that makes the lives of so many on the spectrum so much better. I also don’t think that stopping social media for one day will teach the neurotypical world what it is like to have autism and what it is to be isolated and alone. 

The truth of the matter is for neurotypicals if they don’t have social media they can just go out their front door and easily start up conversations or speak to a friend. Autistics don’t necessarily have that option. I think the analogy would be if there was a day for physical handicap awareness. The amputee gives up his prosthesis for a day to teach the ablebodied what it is like to live without a limb. But the ablebodied still has all their appendages, the only one who can't walk or feed themselves is the disabled individual. Nary a person learns a thing and the physically handicapped is punished. It quite frankly is a dumb idea. For November 1 to be a success in any way shape or form, unless you are the charity hawking your idea of course, then every NT would have to sit alone in a room without any human contact what so ever. That is just not going to happen.

By the way, I for one will NOT be participating on that day (as if you couldn't tell by now). I will be using social media as I do every day to try to educate people around me to understand autism and what our children feel. As far as I am concerned it makes no sense. Having been also very isolated when my children were very little, there was no social media, support groups and outlets for parents of special needs children, I know what it is to be so very alone and quite frankly I will not go back there again.

I know and understand the chasm of loneliness and separateness from society and have neither need nor use for it, for any purpose. The only thing to come out of isolation is selfdestruction.  It does no good to turn off your connection to the world. Isolation, even for the shortest amount of time, creates depression and if someone is very fragile even the smallest amount of depression can be devastating. I think to turn off your life is foolish and not well thought out at all. The truth is what should be happening is an outreach not a shutoff.

I also have yet to hear of any large push among neurotypicals to isolate themselves. Oh yeah some celebrities want to get on the autism bandwagon, heaven forbid they get left behind, bad publicity there. Some proudly announce to the world that they gave $5 for autism. I am so glad that these celebrities could part with so much money to help our cause. The sad thing is that only ones who seem to pushing this idea are the very people who know about isolation and they are members of the autism community. No offense too, but just because some world renown autism advocates think its a good idea doesn't mean they are right either. They only know their perspective and their perspective alone. They do not speak for everyone. I am quite capable of making my own decisions for my children. I don't need their blessing anymore than I need the blessing of the psychiatrist who keeps telling me that collegeman should go for vocational training instead of law school like he wants (that, of course,is a post for another day and it will be a doozie).You also teach nothing by removing yourself from society.  

I also have no patience for cheap promotional gimmicks. I don't need a special button showing the world how wonderful I am because I gave $5 for autism. I give to autism every waking moment of my life apart from what comes out of my bank account, and that amount is my business alone. I do not need kudos from the world. You also don’t need a “day” to give to an autism charity or any charity. Just open your damn bankbook and give something.

Meanwhile come November 1, I will be on twitter as usual and on facebook. If anyone needs help or an answer to a question, or a virtual HUG, I will be there just like every other day.


Join us @TheCoffeeKlatch for a 24 hour Educate for Autism event. No one has a right to silence us and no one is going to. Join #AutisticsSpeakingDay on twitter.

"Are you aware of what Autism is? 1 out of 110 kids are. Monday November 1st is a day of awareness for Autism. Some people will be shutting down their computers in an effort to express the frustration due to lack of communication skills by many on the spectrum. We commend their effort. Others, like The Coffee Klatch will be speaking out and speaking loudly in a 24 hour interactive forum on Twitter. The Event is called "Communicate to Educate - Speak out and Speak Loudly" The event is to be moderated by prominent people in the autism community who will be sharing their experiences, resources and incredible knowledge. We in the special needs community know to well the disorder known as Autism - it is those that do not that we hope will take a few minutes of their day and join us. With 1 in 110 kids diagnosed with Autism - almost every family will be impacted by the disorder with someone they know or love - come and be educated - meet some great people and say hello. "


Go to http://tweetchat.com/room/tck ; let it access your twitter account; put your refresher button down to 5 seconds; join in the chat; bring ideas, thoughts, musings and information. Share and educate. From Monday 9am thru Tuesday 9am.

See you Monday.

Elise


Thursday, October 28, 2010

American Thinker Promotes Bigotry Against the Intellectually Disabled, Surprised They Didn’t Categorize Them as “Untermenchen” Altogether


American Thinker is a conservative on-line political magazine that covers quite a lot of topics pertaining to the US and the world. It is usually an interesting read when it comes to foreign policy analysis and even at times economic policy. However, what I have noticed recently is the unmitigated turn towards snobbery, elitism and demagoguery. Now the interesting thing about that is that those at American Thinker tend to rail against the progressives and their vision of their superiority in all matters, but lo and behold it is time for those who live in conservative glass houses to not throw stones.

What actually threw me a little today is the ignorance that abounds in an article about accommodations in college setting for those with disabilities. (here) Read it if you wish, just don’t have anything near you that can smash through your television because you will be inclined to hurl something at some point. It is astounding to me the absolute ignorance of persons that pride themselves on their intellectual feats. What is also interesting is that twenty years after the passage of the Americans with Disabilities Act and the Individual with Disabilities Education Act, how uneducated people are about disabilities, the reason for accommodations, their purpose and  how they actually work.

I should have known that some of the comments were going to be incredibly condescending and ignorant, but what I found were downright nasty and evil perceptions of those with disabilities. Somehow our children, or for that matter those  adults with disabilities, take up too much oxygen and serve no purpose in society. They decried the idea that college has been dumbed down to fit those with issues and that it was all about the colleges trying to make money. Some even said that too much emphasis is placed on college and that is why those with intellectual disabilities insist on going. That more merit has to be given to menial tasks that these individuals can do and then they wont bother those who are truly entitled to an education.

I have to tell you I thought that this kind of stupidity was no longer mainstream. I suppose that since there is so much more awareness in our world about persons with disabilities that the majority of people had some kind of an inkling of what persons with challenges can do. (Now remember we live in a highly progressive area and collegeman was not welcome and abused by his peers, nursery schools and even  synagogues in our area because of his autism, so this ignorance is not the lone commodity of the conservatives.) I even thought, stupidly it seems, that those who pride themselves on their intellect would have actually read a book or two about disabilities, accommodations and how they work before writing an article or mouthing off. Yes, we have had a few instances at collegeman’s school concerning professors and his disability, but for the most part, when faced with the challenge of teaching a child with differences, the professors have gladly accepted the quest before them.In fact some are even proud of the fact that collegeman is in their classes and has access to their school.

However, these grand intellects at American Thinker  have decided that for some reason because it may take our children longer to understand the meaning behind Plato’s Republic than say someone without a language processing disorder they are unfit for a college education. They call it dumbing down the curriculum. I don’t know about your college but my child’s school does not dumb down anything for him in anyway. What they do is allow him extra time on tests and an alternative location. But if he doesn’t answer the question correctly, doesn’t process the idea the way they are supposed to be processed, doesn’t hand in a paper on time, he doesn’t get a good grade. There are no curriculum allowances for him and make no mistake it is not expected. What is expected of the professors and the college at large is an understanding that intelligence is manifested differently in different people. How a person processes information is not what defines their intelligence it is how they use it and apply it in their daily lives. The ability to spout off poems, quotes from Kant or analyze the Treaty of Versailles extemporaneously is not what makes a person intelligent. What it makes them is insufferable.

The reality is that the entire article seems to talk of those with intellectual disabilities as if they were lesser people. That somehow those with intellectual disabilities are not entitled to the same humanity than those without these challenges. That somehow those with intellectual disabilities are not entitled to try to achieve as best they can throughout their lives. That society has deemed them unfit and that they are not entitled to the respect that everyone else in society is born with. That somehow the pursuit of life, liberty and happiness is not within the purview of those with disabilities. There were a people that felt that way at one time in history, they termed the disabled “untermenchen” and practiced gassing them before they turned on the Jewish population of Europe.

The reality is that the percentage of autistics that have taken part in modern inventions is astounding and would not have happened without them. I suppose the author of this article and those that agree with him can go sit in a room somewhere and contemplate the meaning of life all they want they just better not do it using a computer, cell phone, any data base or modern technological achievement, including life saving medicines. So when you get sick make sure to go back in time and leech yourselves. Also don’t bother to go to any great art museum because the percentage of those with mental illness and disabilities who created some of the world’s greatest art works and architecture is also astounding. Also the concept of life, liberty and happiness is not something you should adopt because persons thought to have autism developed it. Too bad these "untermenchen" had a right to an education. By the way here is a list of persons with a myriad of disabilities who have added to the world’s intellect and progress.

In truth I should not be shocked at how much ignorance abounds in this world, especially among the most educated, but truthfully I am. Luckily I don’t have to deal with them on a regular basis. See it is my right as a human being to tell them all to bugger off.

Until next time,

Needing to recoup from the sticker shock of my children's college tuition,

Elise

Tuesday, October 26, 2010

Well It's Done...College Application Away


Well its done. Filled out and sent in. Written and edited and re-edited. Mused over. Fussed over. Prayed over. Concept driven. Thought provoking. Anxiety producing. Argued over. Compromised over. Bribes were exchanged. No I am not talking about a new healthcare bill in Congress. I am talking about HSB’s college applications. WOOHOO. They are done.

I know that so many of you are not even close to contemplating this event in your children’s lives. But let me tell you. It is one for the books. Not that the application process is hard. Truth be told, the world has made it all very easy. Instead of filling out a myriad of applications for different colleges as we did back in the day, everything is automated through the Common Application. You fill out the one form, possibly have a few supplemental pages (nothing major) pay online through the common application form and it gets sent to the college(s) of your choice. Technically it should have been the easiest application process I had ever been through. But then again we are talking about HSB.

The hard part, and it is like that for all students those with disabilities and those without, was beyond a doubt the personal essay. They have listed several questions that a student can pick from to answer, and then of course there is also the “none of the above” and you can present your own idea. 

Personal Essay Please write an essay (250 words minimum) on a topic of your choice or on one of the options listed below, and attach it to your application before submission. Please indicate your topic by checking the appropriate box. This personal essay helps us become acquainted with you as a person and student, apart from courses, grades, test scores, and other objective data. It will also demonstrate your ability to organize your thoughts and express yourself. NOTE: Your Common Application essay should be the same for all colleges. Do not customize it in any way for individual colleges. Colleges that want customized essay responses will ask for them on a supplement form.
* Evaluate a significant experience, achievement, risk you have taken, or ethical dilemma you have faced and its impact on you.
*Discuss some issue of personal, local, national, or international concern and its importance to you.
*Indicate a person who has had a significant influence on you, and describe that influence.
*Describe character in fiction,a historical figure,or a creative work(as in art,music,science,etc.) that has had an influence on you,and explain that influence.
*A range of academic interests, personal perspectives, and life experiences adds much to the educational mix. Given your personal background, describe an experience that illustrates what you would bring to the diversity in a college community or an encounter that demonstrated the importance of diversity to you.
*Topic of your choice.

Knowing HSB you know that he chose the last idea and came up with something very unique. He decided to write an essay about what the world is like decades from now and how he used his college education to accomplish his goals. Smart kid huh (of course I am his mother but its pretty ingenious if you ask me.)

What was truly telling about HSB is how he views the world in the future. I know that sociologists and psychologists say that today’s young have a pretty gloomy picture of the future, but not HSB. In fact, his view is downright rosy. He conjoins his ideas of love of computer, media, acting and psychology to create video games that help people understand one another and that leads to his games helping to end racism, discrimination against the disabled, religious hatred, misogyny, sexual orientation hatred, ethnocentrism and any other kind of hate you can think of. Oh, it does also make him quite wealthy. Why not?  Listen a kid has to eat and if you are going to dream you might as well dream big.

I actually am quite proud of HSB for his view of the future and the need he has to right so many of today’s wrongs. We do understand where HSB gets a lot of his ideas for ending discrimination. I guess even though we don’t think so he is more aware of his own disability and I think he feels slighted sometimes. Perhaps he is just more aware of society’s ills than I also gave him credit for. You see since middle school HSB has been somewhat shielded from the news. The events of September 11th had had a profound effect on him and he became obsessed with the world and what was happening. He would get depressed and angry and it would overtake him at school. So we came up with an idea. No more news. No more newspapers. No more television news. No more Internet news. And guess what. HSB stopped being obsessed with the world and allowed himself to be a kid.

The truth is we kept that practice up even until today. When the family sits down to watch the news, HSB actually picks himself up and leaves the room. He may even close the door to his office so he doesn’t hear the TV. But somehow, he knows quite a lot of what is going on and is keenly aware of the world around him. Of course he has arguments about world events with collegeman, most things between the two of them devolve into an argument, and he holds his own. I guess truthfully he hears and sees more than what I thought he did. I also know that he is not shielded from any of the curriculum in school, so what they discuss in school as far as current events and what he hears others talk about does have somewhat of an impact on him.

Truth be told, HSB has a really good and kind heart. Being mean is not something he does and he doesn’t like it in others. In fact if he ever does something that hurts someone he is quick to apologize (except to his bro of course) and does try to make amends (eventually with the brother too, but usually only after a few parental computer-shut-off threats). I know typical siblings. But as I have asked before, too: Why is it that the typical things these two boys of mine pick up are the things you would rather they not pick up, or is that just kids in general? If it will drive you nuts, that is the first thing they learn from their peers.

So anyway, HSB wrote his essay. Hubby worked with him on that and helped him think it through. (It's not as if we hired a college consultant to help our child write the essay as most people do in this area. You have no idea the crap that goes on when it comes to success and the type A parent.)The work on the essay was all HSB's.  Without question, and part and parcel of the aspergers, was that the hard part of the essay for HSB was the openendedness of the assignment. There was no true direction so he had to create direction for himself. The truth of the matter is that I don’t think any highschool student truly does anything without direction, OK unless your child is one of the superbrains who take 5 AP courses in their final year of highschool and for fun they intern at a cancer research facility to just get some usable experience in the sciences. These particular children are in a class all their own and yes we have quite a few like that around here. (And yes they go early decision to the college of their choice.).

What was interesting was watching the process by which hubby helped HSB figure out how to come up with a topic. Organize the topic. Structure the essay.  Rework the essay. Edit the ideas. There was no rubric. There was no direction. It was all up to HSB. I take it as baptism by fire for college. It truly shows the schools just how capable HSB is and what an asset he will be to any college that accepts him. He met that challenge head on and I think he will meet the next challenge of post-secondary education head on as well.

Now one thing that HSB did put in that essay that we insisted he remove was the fact that he has aspergers. We did not tell him why. We just told him that it was unnecessary to tell people that he had a disability. In truth it has been a long accepted fact that students with disabilities who tell the potential colleges that they have a disability tend to not get accepted into college. In fact it is the reasoning behind one of the biggest civil rights lawsuits against the ACT testing services.

Years ago when your child used to receive accommodations from the college board, they used to flag the accommodated student’s tests so that the reviewing school would know that the student received extra time. Invariably as it was shown in court, these students did not gain acceptance into post secondary schools. The court held for the plaintiff and required the college testing services to no longer flag these tests. The SAT Company did not bother to even wait to be sued; they just complied knowing full well that if the ACT Company was held to that standard they would be also.

In fact, when collegeman applied to schools his guidance counselor asked if we are going to tell the schools about his disability. We flatly told him no and wanted no one at the high school to make them aware of his situation. Not only did the guidance counselor not tell me I was mistaken he wholeheartedly agreed with what I said and why we felt it was unnecessary. In fact, HSB made sure today to tell his teachers who were providing him with recommendations that he does not want them to mention his aspergers. Just talk about him as they would any other student. They totally understood. I also think under law they are not allowed to say anything about his disability anyway, but just a reminder didn’t hurt. (Its not like these two lovely people would want to do anything to hurt HSB anyway.)

Now there are some out there who think that telling the schools shows that their child has the ability to persevere. We know that. We see that. We understand how hard our children work to succeed. What the admissions committee sees is a child with a problem and why ask for problems if you don’t need them? They do not need a formal reason to reject your child. Remember that.

Now remember too, that just because you don’t tell the school at application about your child’s disability does not preclude them from receiving accommodations once they are accepted. Once accepted due to the ADA, the colleges have to give accommodations to those that show a quantifiable and absolute disability. Of course, that may be troublesome for some only because some colleges, believe it or not, still do not recognize disabilities as anything but someone trying to get away with something.

In fact in a case from last year, when a Princeton undergraduate sued to get extended time on tests, an administrator from the school derided those with extra time as people that diminish the value of a Princeton degree. It is one thing to get ignorance from the undereducated. It is quite another thing to get ignorance from those that pride themselves on their education and in fact pride themselves on their liberal and progressive education.  Princeton did settle the lawsuit in favor of the student. As I said with collegeman when we were having some issues with the Dean of Drama at his college early last year, the hallowed halls of ivy have a long way to go, unfortunately.


So here we sit. Wondering what will be HSB’s future next year. Where will he go to school and what will he actually learn. How we will help him adjust to his new surroundings and how we will accommodate him in his new endeavor. So far I think HSB is off to a great start. He accepted the challenge and he did a terrific job with it. No matter where he goes to school, his vision of the future is a joyful one. One I think that bodes well for the years to come and tells us something about what HSB will be doing decades from now. I guess collegeman is not the only one who wants to save the world. Where did I get such young men? They do make a parent proud.

red ribbon "chai" hamsa- to life
Anyway the ball is in play…fingers crossed…kabbalah red ribbon on…hamsa at the door…now we wait.


Until next time,

Elise

Sunday, October 24, 2010

Demeaning Those Who See a Psychiatrist


Unless you have been living under a rock this past week you read, watched TV, listened to talk radio, about the firing of Juan Williams by NPR. No this is not a political diatribe, but a commentary about the fall out of words. The CEO of NPR derided Mr. Williams by telling him to discuss his issues with his psychiatrist. Immediately the reaction from Mr. Williams was to accuse the CEO of slander for implying he was unstable, which in effect that was what she was trying to do. She issued a public apology for the psychiatrist comment the next day. The media outlets lit up with the defamation charge against Mr. Williams not because of what he originally said, for which he was called racist, and for what they used as his reason for firing him, but the fact that he was slandered with the label of mental illness. Because the CEO of NPR said Mr. Williams should discuss his issues with his psychiatrist she implied he was considered unstable and that made him unfit to be a journalist or remain in their employ. Apart from the fact that this would be a direct violation of the Americans with Disability Act it truly bespeaks of a terrible amount of ignorance.

The reality is that I believe this does not bode well for our children. So many of our children see a therapist or psychiatrist among the many doctors that monitor their programs. For many of them on medication it’s the only way to receive the medications that help them with the focus, anxiety, depression, tics, and myriad of other co-morbid issues. That society does not see that this as a necessary outgrowth of actually alleviating a neurological based condition and that it actually helps them function is truly telling about the hills our children have to climb.

It is without a doubt terribly saddening because the nasty comments came from those that actually pride themselves on their open mindedness and their respect for the variety found in society. In fact these journalists who are supposed to be those that lead the way in thought and deed have shown themselves to be some of the most closeminded individuals on the planet. To deride someone for seeking help is beyond contempt. To belittle them for seeking health care is beyond contempt. To demean those that have issues and declare that they are unfit for society is repulsive and smacks of historical bigotry.

The sad thing is that no one came to the defense of those with mental illness. No one in the media or politics or science for that matter actually stood up and said this is repugnant to demean persons with mental illnesses and needs. Oh sure they derided the fact that Mr. Williams was declared unstable by NPR, but no one said so what if he did see a therapist or a psychiatrist? What does that have to do with his understanding and view of the world? What does that have to do with his ability to report and comment on the happenings of the day? What does that have to do with his ability to truthfully tell how he feels in a situation? Where were the mental health professionals? Where was the AMA? Where were any of the professional societies that support those who practice mental health?

No one stood up and defended those who have neurological imbalances. No one stood up and said this is defamation. No one stood up and said that people who take medication for psychiatric defined neurological issues are quite capable of functioning and leading full and successful lives. Twenty years after the Americans With Disability Act and there is still a stigma to having a disability, especially one that requires a psychiatrist.

Hubby has always been very protective of the boys and their privacy. He is afraid that one day the boys will go for a job and be turned down because the parent of a student they went to school with will remember that they had issues growing up. It is also why when the boys applied to college we also did not tell the colleges about their disabilities. With the reaction of society to Mr. Williams being defamed per the psychiatry comment, I can see where he gets his fear for the boy’s future and why we need to be even more vigilant and more proactive in protecting their privacy.

As we advocate for our children to be accepted by society because of their autism, it has become apparent to me that we have a much longer way to go than previously thought. For it is not just about their autism it is about their right to treatment and the fact that that treatment should be respected. Their need for treatment does not make them a lesser person. Their need for treatment does not make them incapable of being positive and productive members of society. OK, I will say it, society still really sucks.

Until next time,

Elise 

Thursday, October 21, 2010

Political Bullying, We Wonder Why Children are so Mean

This is a blog from Liberty's Spirit. I wonder whether we realize just how much our children do emulate society as a whole.

Until next time,


Elise
 
I know I was not going to discuss politics until after the election, but something has been bothering me. Not about politics per se but in the actions of the adults involved. The unbelievable nastiness and the belittling of others by adults in our political system is rampant. Instead of using intelligence and logic to try to get your point across adults resort to such virulent amounts of name calling and nasty hyperbole that it is a wonder that there is any kindness left in the political arena at all. Truthfully I am not sure that there actually is any kindness or forethought left.


There is today no holds barred bullying of each side of the aisle with no respect and no thought given to the effect upon society. (Now this doesn’t include those who use real facts-not made up or imported facts.) The overwhelming implication that one side or the other is the anti-Christ is so inundated into this political season that it is quite frankly for lack of a better word, disgusting.  This nastiness is not from the lower echelons of society. But we see it everyday as part of a strategy by politicians, pundits and by news reporters. Society has deemed that these persons are those who lead at this time but instead they seem to cast the worst of us instead of the best of us. Is it not a wonder that childhood bullying is at epidemic proportions when adults are such malevolent examples of behavior? Read the rest here.

Tuesday, October 19, 2010

October Happiness Project-Friends; Also Thoughts on November 1


In continuation of our monthly Happiness Project, this month’s post is about friends. “Friend” is such a loaded word for people on the autism spectrum. Our children have either been characterized as not wanting friends or not knowing how to make friends. There is also the child who wants friends but is so rebuffed that they give up on making friends. Or as in the case of collegeman, has had those he thought were his friends turn on him and begin to bully him so that he just decided that there is no one in the world to trust. Luckily for collegeman, with years of therapy he has decided that there are nice people out there, but he is still unsure of how to tell if they will be a good friend for him or not.

So the issue is what do we do to help our children understand the concept of friendship? What do we do help our children learn to make friends? What do we do ensure that our children will also know how to navigate the social sphere of school and then the adult world?

The first place to start is in school and with social skills therapy. They can of course be one and the same. There is the social skills group where you learn how to interact and playact out situations. There is the social skills group where you discuss situations and how to handle them. There is the social skills group where basic skills are taught like turn taking and interacting during game play. There is the social skills group that teaches your child how to have a conversation. Then there is also the social skills group, called circle of friends (COF). COF is a group of both those on the autism spectrum and neurotypical children from school. They get together and talk about issues and learn how to support each other in different situations.

Now one of the nicer things that is sometimes overlooked about the COF program is the built in support system that most children on the autism spectrum do not have in school. One of the reasons so many of our children end up being bullied is because they have no one in school that has their backs. They are open to being the “other” just because well, they are the “other.” With COF there is that automatic group creation. Meanwhile the benefit for the neurotypical student is that they learn empathy and caring. They understand that your child is not different on purpose and that it is not something to make fun of but something to understand. They also recognize that when your child doesn’t “get” something it just means that they are in need of some extra help and most of the children in COF are happy to oblige. Of course the children involved are hand picked so that the therapist/counselor/social worker knows who would be the best fit, and it does really work. This really isn’t a bad thing at all. In fact, knowing that there are children at school who are empathetic to your child goes along way in creating a truly conducive educational environment for everyone (and yes, mom and dad it is OK to feel relief that your child is not going to have to face nasty peers too. It’s OK that once in awhile we get to take a cleansing breath).

As I have said, HSB had a very different experience in school than his older brother. Instead of being the target of bullies and having no one to stand up for him, it became de rigueur to try to help him and in many cases (particularly the girls) try to fix him. I truly think it is their mothering instincts, no matter what feminists may say about it not being ingrained in women. It was so apparent in HSB’s case when he was dealing with the girls in his class there is no other way to explain it. The boys didn’t want to fix him; they just left him alone, which was fine enough for me. Actually interestingly there was one incident in first grade where HSB was picked on by one boy in his class. The other boys told me not to worry that they knew karate and would protect HSB. So I guess there is that protective instinct in human beings after all, as long as a parent doesn’t knock it out of them. (Unfortunately in one boy’s case that’s exactly what the parent did by forbidding him to have anything to do with HSB. The idiot woman actually even told me that she didn’t know why her son liked HSB. Really, you can’t make this stuff up.) And in HSB’s case, especially as he got older, the attention from the girls was not something he was going to reject in anyway shape or form.

Unfortunately as my boys got older there was a dearth of COFs and social skills groups. They seemed to end with middle school but interestingly enough there seems to be a resurgence of them for young adults with autism. HSB does have his speech therapy in highschool where they work on interaction and appropriate behavior, but as far as a group dedicated simply to social skills it doesn’t exist. I do think in many ways it is the age of the children. Now HSB does have a one-to-one who helps him and facilitates social interaction every day, but there is nothing specifically geared to a group or group behavior, even though there is plenty of group work in school.

Highschools require a charity component or community service element before a student can graduate. Why not make being part of COF in highschool one of the choices? Why is it always about the unnamed and faceless person at the food pantry or community center? Why don’t the highschools, churches, synagogues, and even the Boys and Girls Clubs have COFs as part of their choices for participation, graduation, confirmation and inclusion? Where better to start than with programs that are already geared towards teaching right and wrong and societal obligations?

Meanwhile we parents can help our children by making sure that they have the proper support in school so that they learn the skills they need to navigate the social world. It is doable and it is out there. Whether through social skills groups, COFs, after school programs or therapies in general, our children are capable of learning the social paradigm so that they can have friends and that terrific full life that is our goal for them.


On November 1 and Turn Off Social Media Day for Autism Awareness:

Friendships are something our children do want and our children do need. In fact I would even postulate that it is something all on the autism spectrum need or there wouldn’t’ be that outpouring of attention to social media and Internet interaction that makes the lives of so many on the spectrum so much better. I also don’t think that stopping social media for one day will teach the neurotypical world what it is like to have autism and what it is to be isolated and alone. The truth of the matter is for neurotypicals if they don’t’ have social media they can just go out their front door and easily start up conversations or speak to a friend. Autistics don’t necessarily have that option. So for November 1 to be a success then every NT would have to sit alone in a room without any human contact what so ever. That is just not going to happen.

By the way, I for one will NOT be participating on that day. I will be using social media as I do every day to try to educate people around me to understand autism and what our children feel. As far as I am concerned it makes no sense. Having been also very isolated when my children were very little, there was no social media, support groups and outlets for parents of special needs children, I know what it is to be so very alone and quite frankly I will not go back there again.

I know and understand the chasm of loneliness and separateness from society and have neither need nor use for it, for any purpose. The only thing to come out of isolation is selfdestruction.  It does no good to turn off your connection to the world. Isolation, even for the shortest amount of time, creates depression and if someone is very fragile even the smallest amount of depression can be devastating. I think to turn off your life is foolish and not well thought out at all. The truth is what should be happening is an outreach not a shutoff.

I also have yet to hear of any large push among neurotypicals to isolate themselves. The only ones who seem to pushing this idea are the very people who know about isolation and they are members of the autism community. You teach nothing by removing yourself from society. You also don’t need a “day” to give to an autism charity or any charity. Just open your damn bankbook and give something.

Meanwhile come November 1, I will be on twitter as usual and on facebook. If anyone needs help or an answer to a question, or a virtual HUG, I will be there just like every other day.

Until next time,
Elise

Saturday, October 16, 2010

Holiday Time Sucks...Yes I am a Grinch...Too Bad


With the advent of Halloween, the nation enters that time of year I like to call the Holiday Sprint. I am not sure who ever thought that putting all these major holidays together just a few short weeks from each other was a good thing, but I bet it wasn’t a woman with a family. I can see it now, the women putting together their lists, and their ideas of how to celebrate the season. What to serve, getting the kids the proper clothes, who to invite and not invite and how to arrange it and explain it to the younger members of the family when Uncle Sot overindulges on the booze and passes out on the livingroom sofa (you know there is always one).  It is a look of sheer exhaustion; panic and that oft said small prayer to God to help me through this. Why women do this to themselves is beyond me. But it seems that we are hell bent on making things fun for everyone else even if we are too overstressed to actually enjoy the season ourselves. Now add into the mix, the requirements of a special needs child and what you end up with is a balancing act that quite frankly is undoable. Yes, undoable. Oh heavens blasphemy you say. No I say. I have actually come to appoint in my life that I have the strength to say, enough is really enough.

Listen, I am going to say something that is akin to sacrilege. I hate this time of year. Hate it, hate it, hate it. I see no fun in the overstimulation, the sensory overload, the inundation of noises, smells, physicality of this time of year. I don’t even have sensory issues (well not until I started menopause and now that is another issue altogether). I can’t even begin to imagine how hard it has been for the boys. Trying to navigate the world’s sensory stimuli is hard enough but with everything being thrown at them at once, it had to have become overwhelming. I do remember the meltdowns in school and the refusal to leave the house. I had not put it together that it was a sensory issue. I usually just thought it was too much for them to process in general; too much for their brain to filter, between the excited children at school, the barrage of information on the televisions and in the stores. But once I understood we took the proverbial bull by the horns and did something about it.

I do have to admit that this time of year is a little easier for us than most of you. Being Jewish we do not celebrate Christmas, so the smells and lights and the tree associated with Jesus’ birthday doesn’t permeate our home. Now this didn’t mean that the children didn’t have holiday celebrations in school and that there weren’t trees and lights and decorations all over town. We used to go into New York City every year too to see the tree at Rockefeller Center and the Christmas windows. I thought it was fun for them, while we don’t celebrate the holiday, the idea that they could appreciate how lovely things are at this time of year and how the nation does celebrate was just part of raising a child in the United States, then one day they said they didn’t like it. Not because they didn’t like the idea of Christmas, they are no fools, but it was too much for them.

 In fact one of my most favorite stories about HSB is when he was 7 years old. It was Christmas Time and the local bakery makes these wonderful sugar cookies. At this time of year they make the cookies, in you guessed it, the shape of Christmas trees. Well not wanting the boys to think that they are being totally deprived of anything fun and that they were still part of society so I bought them a Christmas tree butter cookie from the bakery. You see I have memories of growing up the only Jewish child in my school in the South’s Bible belt, replete with teachers who at this time of year made sure to point out that I was not part of society and generally not welcome. I didn’t want the boys to feel rejected by their own country. A little acknowledgment of the society around them and knowing that they can be different and still be Americans is just fine. So when I picked up HSB at school, I told him that I had bought him the cookie. Now the only part that HSB heard was Christmas tree, not cookie. He became so excited.

“You bought us a Christmas tree!” he exclaimed.

“No, I bought you a Christmas tree cookie,” I explained.

“Oh, “he said with a forlorn look on his face,” you know I am half Christian so I can have a Christmas tree.”

“No, you are not, both daddy and I are Jewish,” I told him.

“Oh, OK,” he said.

“You get eight nights of presents at Hanukkah, that really is enough,” I explained. How much a 7 year old really understands about religion is questionable but I am sure even with as liberal as my Rabbi is, there is no Christmas tree in his house either.

Apparently HSB knew children at school who had both Christian and Jewish parents and they celebrated both Hanukkah and Christmas. I guess he decided to take a shot. He figured he had nothing to loose. The truth is, not celebrating Christmas did make our lives so much easier for the boys and easier for us. Not only did it eliminate the need of trying to figure out what stimuli they could live with through the holiday but it also eliminated another discussion and attempt at trying to get people to understand who they are and what were their needs.

The truth of the matter is, that Collegeman never did like New York City. In fact when he was little and we lived in the City he used to tell us that he wanted to live out with grandma. My mother-in-law (should rest in peace) lived where we have now lived for 15 years. We would go and visit her and collegeman would be so happy out here. We had no idea that he had such issues and that the noise, sounds, and smells of the City were so much for him to handle. There was a calming in his brain when he came out here, only he couldn’t explain it to us and no one, not one professional, caught the issues. But eventually we did move here and the rest of the story is as they say history. On the other hand, I am not sure that HSB cared either way. He has never seemed to have as big an auditory processing issue as his brother, even though it was a quantifiable deficit.  He did not have meltdowns in the City when we went, but then again we also would take him to the huge Toys-R-Us in Time Square or F.A.O Schwarz so I think he made himself put up with anything at that point. But once we decided not to go in with them anymore he really didn’t bat an eyelash.

Now Thanksgiving is another issue.  Of course we do Thanksgiving. I don’t like Thanksgiving at all. I never really enjoyed it as a child and as an adult it has been fraught with so many issues that I generally have no good feeling towards the holiday. We usually go to my sister-in-laws for the holiday and she is wonderful and welcoming. All of hubby’s siblings are there with their families and under normal circumstances that would be just fine. But with the boys it is just too much for them.

SIL has a media room in her basement so we make sure to bring dvds of their favorite movies with us and their handhelds and even at one point some of their favorite video games. Having an older boy cousin the house was decked out in boy toys so it wasn’t a problem on that end. We would bring the boys appetizers down in the basement where they had ensconced themselves to avoid all the hubbub and noise.

When they were little it was harder because that meant that one of us had to stay with the boys all the time to make sure that the interactions with their cousins went well. It wasn’t that their cousins were ever mean to them, quite on the contrary, but because the boys couldn’t’ read social cues we were always concerned that they would not handle things with their younger cousins well. So one of us stayed to supervise. That task usually fell to hubby, as the boys even then preferred his presence to mine.  Hubby never minded though, if his siblings did want to talk to him, they would just visit in the basement. I in the meantime would help out in the kitchen.

Now when dinnertime came, that was another issue. There would be at times over 25 persons sitting for dinner. The noises at the table and the smells of the dinner for most would have been great but the boys needed their handhelds with them to keep them calm. I suppose it would be like their fidget toy today. When there was the long toasting and the “what are you thankful for talk” with the children, it did not go over well, and one or the other would get cranky (to say the least) and have to leave the table. Also the food even though Thanksgiving appropriate was never what they liked to eat so it became another issue. They would nibble on the turkey, bread and butter but then have to be fed when we got home. (Its not that SIL wouldn’t have given them what they like, but how much can you ask of people. Cooking for 25 people for several days is more than enough for one person.)

I suppose in many respects we are very lucky. Our extended family never made us feel that the boys were a burden and never made us feel that the boys were not welcome. We just knew that it was not something that the boys could handle quite well. Luckily we did have family who understood and allowed us to create a small oasis in the midst of the celebration for them so that we could all be together on the holiday. I think for us it really was just the stress of figuring out how to get the boys there, making sure that they were comfortable and in the end making sure that what ever happened with the boys didn’t ruin everyone else’s holiday.

It is an extreme balancing act that you have to create during this time of year. Figuring out how to balance the sights, sounds, smells and crowds of holiday time is very stressful and time consuming. The reality is that there is no one answer for anyone. You need to see what works for your child and for your family. It does help if you have understanding relatives and quite frankly those that weren’t didn’t remain part of our extended family.

Part of the journey that you enter into when you marry is the creation of your own life’s adventure. You create your own holidays and traditions. It is nice when those traditions that you grew up with can be carried through to your children. It makes for continuity and for a continuation of all that came before you. Truthfully it is also a large part of any community. But we cannot always have that. We cannot always follow through with traditions same as our parents. Sometimes we need to create our own traditions and our own celebrations in a way that suits our children and us. One of the aspects of creating a future for our children is to teach them that they are entitled to celebrate holidays in the way that is comfortable for them.

As an example let me tell you quickly about our Passover Seders, even though it occurs in the spring and is not relevant to this time of year.  Growing up we would have Seders that lasted several hours. We would review and extol the journey of the children of Israel from bondage in Egypt to freedom in the Land of Israel. It was a joyful experience replete with prayers, discussion and song. Well the boys can’t tolerate singing and have no patience for some very long ceremonies. So we have cut down the Seder to a 15-minute tradition. We go over the history, the symbols and the miracles that God performed. At that point, when we bring God into the discussion, without fail, collegeman says something disparaging about the Almighty. HSB gets upset and they end up yelling at each other. We however, have gotten smart; we do not allow them to sit next to each other during the Seder to avoid the argument coming to blows, which it has on occasion. So in many ways this lively discussion has became our tradition; a robust tête-à-tête about the answer to life, the universe and everything. It may not be what Moses had in mind when he, with the help of God in heaven, freed the Jews from bondage, but the sheer act of chutzpah on the part of the boys to remake the Passover holiday in their own image, I think goes quite well with our  3,500 year old Jewish heritage. 


OK, sometimes traditions do change...

For us and our children, its more about this:


 So L'chaim, to the life we make and the joy it brings us all.

Happy Holidays,

Until next time,

Elise

Thursday, October 14, 2010

Apologizing for Accepting Your Child, Quirks and All, Why?


The latest post on The Thinking Person’s Guide to Autism has left me well…thinking. The author has written some insightful and deeply felt thoughts about her son’s autism. One of the topics she mentions is that she accepts him for who he is, all quirks and idiosyncrasies included.  The truth is I have been saying the same thing about the boys for some time. They are who they are. There comes a time when you have to just accept who your children are and how they are going to be. Quite frankly I think this is totally in line and not in contradiction with having the right to define yourself. (Read this post and you will understand the differences I am alluding to.)

Here is the kicker from this morning’s revelation. As I said I have been saying for some time now that collegeman and HSB are who they are. They have their foibles and their issues to work on. They have their challenges and their gifts. They also have their quirks and idiosyncrasies. Now everything put together in one basket, knowing HSB it has to be a video game adorned basket and for collegeman it has to be a human rights adorned basket, makes them who they are. They are unique individuals as is every one of the over 6 billion persons on planet Earth.

The interesting thing about this topic that I have noticed is that we tend to get defensive about these revelations. That at times its almost as if parents of autistic children are apologizing for recognizing who their children happen to be. I have never met the parent of a neurotypical child who feels the need to apologize for whom their child happens to be or make a big show of it either. Yes, you will find a moron parent who apologizes to the world because their offspring did not attend an ivy league college, but that is not the majority of people, just a lot of parents near where I live. Yes, that is a post for another day, or not depending on whether anyone cares about the elitist pole up your butt people that inhabit certain areas of the country.

The parents of neurotypical children tend to just accept life as it happens. They know that their children will become adults and that eventually they will go their own way. That their personalities are who they are and that they have shaped, or not shaped, the character of their children. They just expect this to happen. They know that their children will lead a certain type of life in a certain type of way. They expect certain age-related issues and they expect the rhythm of their children’s lives to be very similar to what had come before for generations, only with a lot more technology. So when one of these parents say, “Johnny, is so and so,” no one person bats an eye. They don’t’ apologize for it. It is just a normal part of their lives.

But for some reason we as parents of autistic children need to apologize for accepting our children for who they are. I don’t know why that is. Is it because our children are so different? Their quirks have them stand out in a crowd? So what? It is their quirks that make them who they are. It is their quirks that give them the personalities that we love. If they were child prodigies that would make them stand out in a crowd, but I have never seen any of those parents apologize for who their children happen to be. In fact their children’s idiosyncrasies are celebrated (also have you ever heard of a prodigy that didn’t have some kind of quirk. I mean look at Taylor Swift. You can’t tell me that that beautiful brilliant young woman doesn’t have some quirks somewhere, you can't be that talented and not be different.)


I don’t really know why we as parents of autistic children need to tell everyone how we accept our children for who they are, when neurotypicals never have to voice that at all. Is it insecurity on our part? Are we afraid that by accepting them we won’t push them properly and miss out on a therapy that could make their lives easier? Do we need reassurance  that by accepting our children it doesn’t mean we have given up helping our children, but it means just the opposite. Not sure where the insecurity comes from and why in fact it is there. Are we just still scared all the time for our children? Afraid that one misstep we take will doom them and take from them the life we are trying to help them create for themselves?

Until this post I had never told anyone that I realized that collegeman and HSB are who they are quirks, idiosyncrasies and all, except for my mother. Never really thought it was relevant to people’s understanding of how I deal with them and why we do what we do at times for them and the standards we hold them to. But now I see that it is very relevant. I know many people think that I spend all my time trying to change who they are, which is not true at all. I spend my time trying to help them be all that they can be (yes like the Marines).  I am just not sure why we parents of autistic children feel the need to apologize for it in some way.  I have to admit I find it rather odd for you see my boys are my heroes.





Until next time,


Elise

Bullying of an Autistic Kindegartner By Dairy Queen Employees

This is a post by Alterna-Mom Susan Richardson. She wrote about her family's recent experience at the Dairy Queen near her. Until Dairy Queen fires those idiots I say buy your ice cream in the supermarket. As I asked in the Watch This Video Post, what is wrong with America?

Open Letter to DQ...how my autistic daughter was abused by your employees


Dear DQ,

This open letter is to let you know that my autistic daughter was insulted, mocked and experienced defamation of character by some of your employees this evening!!
As I was placing my order, my daughter was ordering beside me as well. How ever cute that may sound (and in my motherly eyes it was cute as well as a huge milestone) it opened her up for abuse by your employees. Because of her infantile autism she has a severe speech delay and speech impediment. For the first four years of her life she was catatonic and we have worked tirelessly to pull her out of her inner world and integrate her into the community. Tonight your employees demonstrated that I need to work harder at educating the general populace! More here.


Watch This Video

What is wrong with our society that parents think bullying is just fine and that such name calling is OK? What evil lurks in the hearts of men....for shame on America for giving short shrift to such pain and for allowing bullying to get to this point.









There are no words I can add.

Until next time,

Elise

Sunday, October 10, 2010

Changlings and Shapeshifters and Ghouls-Oh My: Adventures in OZ

This is a repost from October 2009. With Halloween just around the corner I thought it might be relevant to understand that not every holiday is for every child and that it is just fine, not withstanding some idiots who seem to think otherwise. Read the abuse heaped upon some other bloggers who openly told how their special needs children do not celebrate Halloween in a typical manner. (here, here). Sometimes just when I think society has started to grow-up it never fails to amaze me just how far we still have to go.
 
I have been hinting for several weeks about discussing our issues with Halloween. I know I have been sidetracked because of the many adventures of Collegeman and Highschoolboy and I apologize. Anyway here goes the wonderful reminiscences of my years of trick-or-treating. I have to tell you that my favorite picture in the whole world is the one I referenced in the earlier post Changing Your Dreams: Life With an Autistic Child. It's the one where collegeman and highschoolboy are still really little. Highschoolboy was even still in diapers. He was dressed as his favorite character in the whole world, Winnie-the-Pooh and Collegeman was superman. I love this picture for the total parental reason that they look so cute and adorable. But if you look really close, what you can also see is a look of unsureness on highschoolboy's face. He seems to be saying to himself "I am not to sure about this costume thing." Now highschoolboy had not been diagnosed yet, so as much as we were aware, unfortunately it wasn't until much later that we picked up all the signals.

Highschoolboy had always been terrified of clowns. Not just the child afraid of the scary looking man with the balloons, but a down right terrifying Nightmare on Elm Street kind of fear. If a clown showed up at a party highschoolboy had to leave. If a clown showed up at pre-school he could not go to the assembly. I had been assured by the pediatrician that alot of children are afraid of clowns. So I thought nothing of it. It wasn't until recently that a person I follow on twitter who has aspergers explained to me that it was a very common fear among autistic children. The distortion of the facial features is very confusing. Who knew, another misheggas (nonsense) that our children get to deal with.

But what I had not figured out at the time of that Halloween picture is that absolute fear that this holiday engendered in my son. It was not the ghosts and goblins. He knew like any child that they were not really real. He knows that Dorothy doesn't travel to OZ and that the Wizard is not a real person. (However, we do know that the Wicked Witch of the West exists, we just can't melt her with water.) But he really believed that when people put on masks and costumes they transformed, shape-shifted like a changeling, into those ghouls for the day. He thought that there was some magical power that the "Halloween Aura" had over the masks so that people's personalities were transformed  into those monsters or characters. So every year when he went trick-or-treating and put on a costume, he would make sure to only wear part of the costume, or no costume at all. We have pictures from several years worth of Halloweens and in each one he is very hesitant and looked frightened. Again we thought nothing of it-made excuses, like he had an ear infection or was coming down with a cold. He never ever said anything. Just thought it was a kid thing, you know a little more intense than the average child, but that is highschoolboy.

Finally he admitted (sometime during the middle of elementary school) that he was afraid and did not want to trick-or-treat. We assured him that he did not have to. It wasn't a requirement of being an American kid. Well, I can't tell you the relief he had that year. I felt so bad that here for all these years we had made this child do something that really terrified him because we thought he was having fun. I tell you guilt has a way of creeping right into that little nugget called your brain and wrenching you inside out and upside down. What a mommy-moron I had been. Still beat myself up over this one. (Can you tell?)  I had thought I was on top of things. Boy did I learn the hard way to pay better attention to the signals my kids give off.

Now over the years, once we understood the issues, we informed the schools to be on the lookout for him getting upset. They have more than obliged. They made extra sure to watch him and keep him happy. There were even a few times that I kept him home if there was going to be a Halloween party at school. I guess that shows just how afraid he was. A kid giving up candy and cupcakes and a party in school. What we did do at home, however, was for him to help give out the candy. He actually really likes that. He didn't have to wear a costume and he got to participate in the holiday.

I have to tell everyone though, the anxiety this holiday causes him has not really gone away. I still have to remind him that kids will be wearing costumes to school for Halloween and that if he gets upset to go to the nurse. He assures me that he is OK now. That he can handle the confusion. I guess maybe that is a large part of it too.The rules are thrown out and kids behave badly. Nothing is what he is used to and change and a lack of order are not somethings that makes him happy. Hopefully he understands what happens on Halloween. That today there will be hijinks and silliness. That some rules will be broken. That masks don't turn you into the undead. Maybe those are the rules for Halloween he has learned to follow. So he is more comfortable with the holiday today.

Luckily the school where highschoolboy attends does not broker too much nonsense. So he will not feel so overwhelmed. It also happens to be one of his lighter class schedule days today. So everything will be easier. I know however, that in the back of his head he is like Dorothy knowing that for safety and security  "there is no place like home."

For some really good ideas on how to have a modified and happy Halloween, read this post by Shannon Des Roches Rosa at The Thinking Person's Guide to Autism.
Until next time,
Elise

Saturday, October 9, 2010

Driving Lessons and a Literal Mind


HSB has reached a new level in his growth. Not just the fact that he is now taller than me and I can lay my head on his shoulder…not that he would let me of course. The part that he has no patience for his mother is quite age appropriate and he does not fail to let me know how much I annoy him. But actually, I am talking about his driving lessons. Yes he has had three lessons with hubby so far.

If anyone has been following the saga of us getting HSB to drive then you would know that this is a huge accomplishment. The truth is he was very frightened to drive. It was quite the daunting task for him. It had taken all summer for him to prep for the learner’s permit and finally hubby had to take him, well push him, to the DMV and have him take the test. Of course he passed. So, now for the really fun part of the story.

You have to understand that HSB had been so afraid of driving that he actually wouldn’t even go to the local go-kart place. He was terrified. We had gone go-karting on vacation in San Diego years ago and he didn’t have a good experience. He got bumped and it upset him. He felt out of control and was very afraid to go too fast. So it was with great excitement and a little trepidation that he actually asked to go go-karting right after getting his permit.

Well needless to say hubby took him straight away. HSB went on the track for younger kids and realized that he could do quite well. In fact he was so thrilled that he made sure to bring his learner’s permit the next time so he could go on the more age appropriate track. Woohoo- a grand time was had by all. In fact he asked for a real lesson the next day. You bet hubby complied.

I guess it is something that men look forward to, the teaching your sons how to drive. It is really interesting, as we raise our children and we think about the things we had hoped to be able to do with them, it never really dawned on me that the driving lesson was one of them. For hubby it had been the dream of every father to be able to throw a baseball or football with your child on any given Sunday. Or watch your child in little league or peewee football/soccer game. But with our children none of this was to be. They either couldn't keep up and understand team sports as young children or as they grew they had no interest in sports. They just didn't see the fun of it. Missing out on these coming-of-age experiences with our children, I think is something we all can relate to. It had never occurred to me just how much it had meant to hubby to be able to do this one thing, driving lessons, with his son. (He couldn’t teach collegeman because collegeman's seizure disorder prevents him from driving.) A sense of normalcy, just one little thing, I suppose in a world that has never been quite normal for us. So instead of hiring the professional driving teacher off hubby went with HSB,

The first two lessons were very basic. Hubby took him to an empty parking lot and taught him first how to turn on the car. He sets up his seat. Fastens his seat belt. Checks the mirrors. Puts his foot on the break. Starts the car. Once they accomplished that HSB was able to move the car. However, the first time he didn’t get very far before a police car showed up in the parking lot. No not because of HSB’s driving, it was a routine patrol visit. It just coincided with HSB’s first driving lesson.

HSB immediately took out his wallet and placed it next to himself. Asked why, he said just in case the police stopped him he would have his permit ready to show the officer. That way he wouldn’t get in any trouble. OK fear of the police a good thing. Rules of the road, especially the speed limit, will be followed (hopefully). He actually only got to move the car about 100 feet that time before he tired of it and handed the wheel back to hubby. There was a little girl riding her bike in the parking lot and HSB was uneasy with how close (not) that she was coming to the car so he stopped. Better to be safe than sorry.

The next time was more of the same only no police and no little girl. He did move in a general straight line and practiced turning the wheel. So off they went for their third lesson today. Well today, hubby took him out on the regular road. Oh yippee.

It was a straight piece of road. No twists and no turns. All HSB had to do was go straight. Keep his foot on the gas and point the car in one general direction. Well as he drove down the straight and narrow he kept turning on the blinkers, constantly, first right and then left then right and then left again. It was like he was creating a light show with the car.

Finally hubby asked HSB what he was doing…

Well, hubby had told HSB that every time he turned the wheel right or left he had to use his blinkers to let people behind him know what he was about to do.  He had to move the wheel right and left to keep the car straight on the road so he was letting people behind him know what he was doing…

Hubby had to explain that he meant to use your blinkers when you make a turn onto another street or move to another lane…”oohhh I see” came the response.

Teaching someone with an absolute literal asperger mind to drive is not what hubby had envisioned when he thought about teaching his sons to drive. Hubby realized that for the future he was going to have to be extra specific with the driving lessons.

But I tell you what was typical about this driving lesson…the wide-eyed look of the parent/passenger/driving instructor, whose life flashes before their eyes when their teenager is behind the wheel of the car. I guess we got at least one typical part of the dream.

Until next time,

Staying off the roads on the weekends,

Elise

Thursday, October 7, 2010

A Rose By Any Other Name:The Right to Define Oneself

This is an earlier post from August 10, 2010 that I am reprinting because I have received several queries based upon a comment I placed in Wired magazine. This is how I feel. You do not have to agree with me. I had many comments before from those that did not.  Just be respectful if you want to comment or it won't be published.
 
There is something that I am going to address that seems to be a problem within the autism community, no I am not talking about the vaccine issue. It is about the mindblindness of the high functioning autism community. I am not referring to the mindblindness in the traditional sense of the inability of an autistic person to read someone else’s persona, but the idea that so many in the hfa autistic community cannot see beyond what they perceive to be the way to approach and function in life. It is an interesting development that I have come across recently and it truly seems to be starting to be a problem. ..original link deleted because it is no longer available...but it was referencing a discussion between myself and members of the hfa community.

Here’s the interesting thing about that discussion, while I did not take offense at how these individuals choose to see themselves, they took offense that I did not raise the boys to view the world as they did. They took offense that I did not raise the boys to be “autism pioneers” and that I taught the boys to be involved in the society at large. They resented the fact that I don’t consider autism the deciding factor in how I teach the boys to view their lives and who they are. The truth is, and with all due respect to them and those who agree with them, that is how you perceive the world. You are entitled to perceive the world anyway that you would like. You can call yourself and attach yourself to any definition of your person that you would like. But you do not have a right to tell me and my boys how they are to perceive themselves.

The reality is that as the boys’ parent I am entitled to raise them with the perspective that I think is appropriate just like any parent is entitled to do for their children. If I do not want the boys to consider their autism a major part of who they are but just understand that it is a small part of theirselves, then that is my right. If I want the boys to consider themselves human beings first and foremost and not autistic human beings then that is also my right. Granted when the boys are fully grown and live their own lives, they will decide who they are and no one, including myself, will be able to decide these things for them. But as they grow it is my job to make sure that they understand that they are their gifts as well as their issues and that these characteristics are who they are. But issues and gifts are not mutually exclusive to each other and that it will neither prevent nor relieve them of the responsibility of trying to make themselves happy and lead a successful life.

Now by successful I also do not mean financially only. Yes, the boys need to be able to financially provide for themselves. I am also hoping that someday they find a partner and build a family. They need to be able to provide for that family and if it is only a life partner then they should know how to care for each other. Also success means finding a career or purpose in life that is fulfilling. The boys have the right to decide in what direction they want their life to go and what actually makes them happy.

What I found so disturbing in the discourse was that many of the persons with whom I corresponded did not seem to be able to view the world as I see it. They decided that everything they do is because of their autism and they refer to themselves as “autistic X.” They also reject the idea of what is a human being and felt that a new paradigm needs to be established. They also challenged my thought process because I choose to raise my children with a religious background and I assume that is because they reject religion. Again, the boys are not just one thing and one thing only. They are the culmination of eons of genetic evolution and what they are able to do is because of the confluence of all of their genes not just the supposed 27 that may have something to do with autism. While their autism may give them a different perspective when it comes to their artwork, it is not what made them artists. Their artistic ability comes from a genetic predisposition to art which has been handed down through the generations. Just as their intellect comes not from their autism, but is again handed down through eons of evolution.

On the other hand their autism is what gives them the ability to think outside the box when it comes to viewing history or politics but it is not what gave them the ability to think and understand. In fact in many cases their autism prevents them from understanding the abstract reasoning associated with higher math and science and has inhibited collegeman from pursuing his love of forensics. So if he wants to continue or change to a science major he would need to find a way around this deficit and find the willpower to work even harder at school than he already does. So the choice is his and he will decide what he will do in the future and how he approaches his education. Right now it is why he chose a history major and a law minor. But that can change at any moment as well. We support him with whatever he wants to do. That is our job as his parents and no one is going to tell him he can’t or he shouldn’t because of his autism anymore than trying to tell him how he should explain himself to the world.

The fact is that no one is going to tell him how to describe himself or where to put his energies. It is fine if those in the HFA autism community want to lobby Congress or rally in Washington, or participate in Walks for Autism. The boys do not. They want to help feed the hungry, fight to help those in Darfur and support the State of Israel in its quest for survival. No one in the autism community has a right to tell them that they can’t or that their job is to make sure that everyone around them is aware of their autism and that their job in life is to teach everyone that comes in contact with them about autism. If those within the HFA autism community want to live their lives that way, then they have that right but they do not have a right to dictate to others what they should do or not do. Members of the HFA community do not have a right to demand that others hold themselves up as the autism poster child just because that is what they want to do with their lives.

They also don’t have a right to say that because we do not define the boys as autistic human beings but as human beings that we are ignorant or prejudiced or ashamed of our children. Perhaps that is the feeling that they received from their parents and the people around them, but it is not across the board and quite frankly I resent that. In fact I would say that it is downright insulting. Again so many members of the HFA community are unable to view the world outside their bubble and cannot understand that there are different parents, upbringings and perspectives. The mindblindness that I spoke of earlier.

To say that the reason we don’t describe the boys as autistic human beings is because we want a cure and we are too stupid to know that there is no cure is also insulting. I have news for all those in the HFA autism community, YOU BET I WANT A CURE. It does not mean I don’t love them or that I reject the boys. What it means is that life could be a lot easier for them and that they have a right to not have such problems and emotional upheavals and trauma in their lives. The simple act of being able to speak in class or meet new people without climbing into a mental shell or to simply transition into a new school year without having seizures or tics would be a great thing and a terrific way to start eradicating autism.

Furthermore, for some of my friends with nonverbal children, a cure would be nice if for the sheer fact that their children could make their needs, likes and dislikes and desires known so that you didn’t have to guess what the problem is or is not every moment of every day. You never understand how it is such a simple act of saying you prefer chocolate milk as opposed to plain milk as an extension of someone’s humanity, but, so many cannot even communicate that. Do they not have that right? Who is the high functioning autistic to say that these severely affected people do not have this right and the autism community does not have a right to desire a cure in order for an individual to one day accomplish this simple act of personhood. (This is just a tiny example of one act of self-actualization, not the defining act of personhood, so please don’t write inane comments below.)

I think in this respect so many in the HFA autism community only see autism from their perspective as well. They resent the idea of a cure as if something is wrong with them. They resent the attenuation of the concept of normal and want it redefined. Sorry guys, there is normal and there is appropriate and there is how things are done in society. This does not mean that your struggles and your needs should not be met by society but the quest in life to better everyone’s existence is not simply about you and your autism. Autism is a huge spectrum and everything isn’t just about you.

An interesting event took place once for the boys. They were being tested for a genetic research project and they asked the tester why they were there. She told them that they are looking for a cure for autism. The boys told her that they did not want to be cured, that they liked who they were. She explained to them that they were the lucky ones and that they are truly rare in the autism community; that there are some people that are so affected by their autism that they not only can’t speak but injure themselves, live as adults in diapers and have no true understanding of the world around them. As children they understood this message. The question is why the HFA autism community doesn’t see it.

When I was studying in Israel, as a teen, the teacher asked how we would define ourselves. I spoke up that I define myself as “Jewish human being” because the world sees me first and foremost as a “Jew” and a human being second. He responded that that is how the Nazis also saw us, meaning the Jewish people. (By the way it is also how the Nazis saw the disabled as well, as disabled first and foremost without any sense of humanity. Remember the Nazis experimented on the disabled to find the best and most productive way to kill the Jews of Europe in their quest for the Final Solution.) The teacher proffered that just because the world sees you as something other than a human being that that doesn’t mean that you are not a human being first and foremost. Well I have extrapolated that to include my children and their autism. They are first and foremost human beings, not autistic human beings, and the world is obligated to treat them with respect not because they are autistic but because they are human. Additionally, that includes the HFA community respecting their right to not consider themselves as autistic anything other than it being just a small part of their persona, if they even want to include autism as a part of the definition of who they are at all.


Until next time,

Elise

For those who do not understand the title, it is a play on words from Romeo and Juliet the balcony scene: