Tuesday, July 31, 2012

Political Correctness Rears Its Ugly Head, Yet Again

Nothing gets my hackles up more then being told what to think, how to feel, how to speak or what language to use. HERE The idea of life is to try to be as respectful of another human being as possible, that's it. I am so tired of everyone getting insulted over every little thing. If you don't like how someone talks to you, just tell them. If you don't like how someone refers to your disability just tell them... but lists of words and whether you can use them or not and how you can and cannot discuss them...seriously?...This is political correctness run amok.

Anyway this particular post is predicated from a discussion I am having on a blog about a list of acceptable words and terms put out by some autism-self-advocates. Now if this is how these individuals want to approach life, so be it...more power to them. However, I had the horrible nerve to disagree with them and was told point blank that I have to listen to them as they are the ones being disparaged. Well, no, no I do not.

I do not have to listen to them anymore than someone needs to agree with me on what is or is not antisemitism. OK, being Jewish you would think that my opinion on antisemitic literature, politicians and media, would matter but nope, it doesn't. In fact some of the biggest problems I have had comes from some autism advocates who demand the right to tell others how to discuss and refer to autism and autistic individuals, but apparently on this subject of anti-semitism I am a hater, a name caller and completely ignorant. No I am not taking my annoyance out on the list-makers, I am just trying to make a point about obtuseness.

Honestly though, in the end what you have to love about political correctness is its sheer bullshit nature. Anyway, here is one of my comments:

Sorry this is more than mindfulness,  {referring to the list of acceptable vernacular and word usage} which as far as I am concerned means to be aware of how your words can cause hurt to another. I am also tired of this ableist epithet.As the parent of two youngmen with aspergers you bet I will say what I think about autism and what should be done for them and I don't need some permission from some autism tribunal somewhere. Who declared these people rulers in the world of autism? Baloney. It is one thing to be careful not to use a word inappropriately or to hurt someone's feelings, its another to tell people how they are to think, feel and interact, including telling people what word order is politically acceptable and under what circumstances a word may even be discussed. Telling people what they can say and how they can say it  is the thought police (political correctness as I said earlier). It is as if everyone is living in the novel 1984.

Also not everyone in every group agrees to every word, category or identification. Because one group decides how someone with a disability is to be referred to does not mean that everyone in that community agrees or quite frankly cares.  I know for a fact when I asked my own college age sons, who are extremely intelligent and involved in human rights, about this list, they said they think this is ridiculous. In my oldest's own words "who the hell cares?" Maybe these autism tribunals would like to shun him and his brother, marginalize them, denigrate them because they are not good little "autism-advocates." They don't follow the politically correct dogma.

We see this nonsense too often in our culture. Yes it is political correctness.
You use the wrong language therefore you are evil. You do not follow the path set out by some unknown self-appointed bodies you are excoriated. You dain to follow your own path you are repulsed and considered repugnant.

Language correctness does more to dehumanize people and destroys freedom in society. The reality is that whenever you chill freedom of speech that is what marginalizes human beings. This is why I left the "autism community" and ventured out on my own as I had done for all the years I was raising my sons, and why so many others feel as equally terribly unwelcome as I do. Something maybe these autism tribunals should think about..
****

Oh I am certain I will get some responses and they will not be pleasant ones. You see I have left the politically correct autism world and "gasp" basically said in our household we can think  for ourselves.

Until next time,



Elise


Parenting......An Olympic Moment

If you have been watching the Olympics, you probably have seen this clip of the USA's Olympic gymnast Aly Raisman's very enthusiastic parents watching her routine on the uneven bars.....




Boy can we all relate!

Can you imagine the video of these parents if Aly wins a medal!

Meanwhile here is Aly's floor exercise routine which landed her in the indiviudal all around competition in London. Notice the music she uses is Hava Nagila. When asked why she chose that music she replied, "she is proud to be using the Jewish song because there aren’t too many Jewish elites {athletes} out there.”



On an interesting note, the Wall Street Journal just ran an article how Hava Nagila is not cool enough for some Jews anymore...seems Aly has more to teach the world than just about perseverance, dedication and sportsmanship...pride in both heritage and country comes to mind too.

On the other hand, here is a short history of Hava Nagila also from The Wall Street Journal:





Until next time,


Elise

Sunday, July 29, 2012

Practicality: Not Becoming an Autism-Only Family

One of the major aspects of parenting a child with an autism spectrum disorder is trying to figure out how NOT to become a one-topic family. It really does not have to be all autism all the time. I make sure to tell parents that if they liked reading non-autism related books before diagnosis, keep reading these novels. If you liked to play golf, shoot hoops, needlepoint or knit then keep doing that. If you liked getting manis and pedis keep doing that. Go out with your spouse and get a cup of coffee together and don't talk about autism. If you volunteered for a charity keep helping out the needy.  Problem is, people tell me is that I can give this advice its just so much harder to put into effect...guess what ...yes it really is...



Now remember I am talking about when your child is first diagnosed, not how an adult should or would handle their own diagnosis. I am told, for many adults the diagnosis comes as a relief and they wholeheartedly embrace their autism. They throw themselves into understanding themselves by understanding everything they can about autism. I am in no way telling these adults what to do, how to feel or how to approach their autism. For them this is a very personal decision and not something anyone else (NT or autistic)  has a right to dictate.

What I am going to discuss here is how you the parent should  act and what you need to do in order for it not to be "all autism all the time." The reality is, that in the very beginning it is all autism all the time. How could it not be? When you finally get that diagnosis for your child, your instinct as the parent is to try to find ways to help your offspring. You need, you want , you are compelled to find out everything you can about autism so that you understand how to help your child. You want to "fix" everything. You want to make everything better and if not better than more manageable, less painful and confusing for your child.

So yes in the very beginning you delve not the world of autism. Your home becomes a sensory friendly environment. Your refrigerator is full of foods and drinks that you are told may be helpful. You make sure that when you go out that there will be a minimal of sensory issues. You look for "autism-friendly" movie theaters, play groups and schools. Good. This is what you are supposed to do.

But......

You also need to remember that not everything in the world is about autism and as I like to say, your child is more than autism. The child who liked to draw before diagnosis is still the child who liked to draw. The child who liked to write stories is still the child who liked to write stories. The child who liked to ride his bike or play on the jungle gym is still the same child. The child who liked to swim before diagnosis is still the same water-fish. Autism didn't give them the ability to do these things, it may make their perspectives or their ability to analyze a project different than say an typical child, but it is not the autism that gives them their talent, their drive or their gifts. Harness these gifts as gifts. Not as an outgrowth of autism.

I used to have a group of friends, all of us have children on the spectrum.  We were at one time our own little support group. Well one of these friends everytime her son did something would say it was because of the autism. When he swam it was because autistic children liked being in the water. When he listened to classical music it was because autistic children are calmed by this type of music. This attitude used to drive a third member of our group to distraction. She would tell me how much she hated that perspective. Everything that our children do is not because of autism, she would say. Honestly I think this difference, among other realities, led to the breakup of our little group. We expected more from our sons, while the autism-encapsulated-mom not only decided everything was due to autism, but autism was also a great excuse for her as well.

While you recognize that your child is still your child after diagnosis you must remember that YOU are still you after diagnosis too. Yes read as much about autism as you possibly can. Make sure you know about the laws and what programs do and do not work for a child on the spectrum. Understand medical advice and the latest technologies to help your child. Delve deeply into this world. You do have to.....but then...

1. Make sure you have a place in your house that belongs to you and you alone.
          When the boys were little and everything about the house was an autism friendly environment, my parents bought me a little black and white television for the kitchen. They told me that I needed to stay connected to the real world. Watch the news they said while I make dinner. It was the best advice. It's why I post information about other topics even on this blog from time to time. You must stay connected to the wider world.
           Have a chair or an area in your bedroom for makeup, and a closet for "nicer" clothes.
           Make sure that you still continue to use face cream and even a little make-up if you want.
           Get your hair cut every few months,  if you can't afford a mani and pedi, then get a manicure at least once a month. Have someone wait on you for a change.Yes the husband can stay with the children for an hour or two while you do this. The hubby will survive and so will the children. Even before we knew that the boys were on the spectrum, I would leave the husband with them for several hours on a weekend day and go do something myself, even if it was only food shopping. They can handle the children and you are allowed some alone time. It's good that they truly learn to understand what your day is really like too. (Listen I understand that not everybody has a partner, but try to find someone to watch the children for a few hours a week if you can or even every other week. Many call it respite, I call it your right to be an adult.)
           Find time to exercise. Even if its no more than going for a walk. Or buy a DVD and have the children do it with you while you are home. Or when they go to school instead of doing the laundry or cleaning the toilets, do some exercise. It's only 30 minutes out of the day.

2. Charity and volunteering
           If you liked to volunteer for your church, synagogue, mosque, or temple before diagnosis still do. If you spent time with the Untied Way or local homeless shelter, still do. I spent time volunteering for a law group that went into schools to teach middle school students about their rights and obligations. I created seminars for my local school about the constitution and coordinated this history with the appropriate school curriculum. I created an ethics seminar for my synagogues education program (the children didn't like the class so it got scrubbed) but heck simply try and teach Sunday school.
           If you wanted to help out with the PTA still do and don't just do it for the special education committee. I purposely did not volunteer for the special education committee while the boys were in school. I helped out as class parent, party coordinator, welcoming committee chair, publishing center support, library aide, and even treasurer of the high school PTA (that one was a hoot since I still can't balance my own checkbook.) People used to ask my why I never participated in the special ed committee and I answered truthfully, that it was important that people see our family as more than an autism family. People needed to see the boys as more than autism or us as more than just a special needs family. Remember society knows that your special needs child takes more money and more effort than a typical school child and it is nice when you can be seen as giving back to the community for something that other people's children can use...seriously a higher percentage of their tax dollars do go to help your child too...
           By the way, this attitude goes for your children in the long run as well. When the boys could join after school clubs I had them join the local volunteer organizations. They helped out by collecting food for the local food bank, collecting childrens books for a local homeless shelter, making posters for  local charity events, raising awareness about the genocide in Darfur, lately they have helped a local horse therapy barn with some construction (they did not see it as an extension of their autism, this project was for Martin Luther King, Jr service day) and this summer they are interning at a local charity doing data entry and what ever else is needed. I had them help out with charity events at our synagogue when they were younger too. If your religious organization has youth groups sign your child up too.
           Now I did and still am a volunteer parent advocate in my town. I am there to help parents of newly diagnosed children and to shepherd them through the education process if they want. But it is done privately with the school district. My name is not on a roster nor is my name part of the CSE committee members. My services are just offered when a parent applies for an evaluation. Listen, I said do other things besides autism or special needs, I didn't say don't help others if you can....

3. Your professional and education life
           I will admit right away that I am one of those very lucky women who could chose to stay home with my children. The hubby earned enough money that we were able to give the boys what they needed. OK, I will also admit it, we have an obscene amount of debt too. But that just goes with the territory of special needs parenting I think. The issue for me was who would do a better job at raising the boys, me or a stranger. Luckily I really didn't have to think  too long about this issue. Hats off to the single-special-needs-parent or any working-parent-couple of special needs children. Coordinating that reality is something I never had to face and I am not certain what I would have done.
            Remember too, if you are one of those parents who goes to work, its OK to like what you do and to be away from home for awhile as well. It's just fine to think about your professional life and to care about your professional future. Don't guilt yourself. I have friends of typical children who love to work because they like having daily grown-up conversations. These people like that they inhabit two worlds and not just one. Being a special needs parents doesn't mean you can't and shouldn't feel the same.
            But for those of us who do stay home, another way to not becoming inundated with autism is to remember that you were trained in a profession and have some skill sets that are very important. After the boys were diagnosed I decided that I needed to continue with my professional life. I actually had never passed the Bar Exam in the state and I decided to try again. I bought an on-line study course and I coordinated my program. I studied between therapy appointments, laundry, cooking, food shopping and mommy-taxi time. I studied with two small children either sitting on my lap or sitting next to me. And yes I passed. It was something I had to do for myself. Have I ever really practiced law? I tried part-time from home, but nope it really didn't work out at all. No, sometimes you really can't have it all.
           Today there is so much on-line education and professional programs that you can continue to learn and practice your skills without actually leaving home. Remember that little corner of a room for your make-up and clothes....add a computer and/or text books. Don't stop learning and don't give up what you have learned.
            Also telecommuting is a major part of business today. Don't just give up everything you have worked for. Talk to your boss, see what you can work out. Or start a business from home. So many moms do it, especially in today's economy. You would not seem like the odd-person out. (I know I talk a good game, but in reality I still haven't figured out a business from home. As I said, I am still trying to figure out what I want to be when I grow up.)


In truth there is alot you can do to not become an autism-only family. But this mainly depends on the time and effort you put into remaining a rounded person. It takes work to accomplish this goal. It will not happen simply because you want it to. In all honesty while your children are little, you will be more of an autism-only family. You are working on understanding and coordinating everything in their lives to set them on the right path. As they grow up and you see what they are also interested in and where their talents lay, you too can loosen the autism-strings and as they fly so can you. When you have more hours during the day to yourself, you will find that you can rediscover yourself as well.

Everything I mentioned in this post is not something I did or accomplished from the get-go. Initially as I wrote, my parents bought me a little television to stay connected to the world. That and studying and passing the bar are the two things that kept me in the wider-world. You need to understand that everything is incremental in this world and that the steps you take do not have to be huge ones either. For example: crossword puzzles. I love puzzles. For years everyday I did the New York Times crossword puzzle. That was my challenge and that was my escape, so to speak. Remember to keep yourself its the little things, not the big things that count.

This is also why I started the blog The Rediscovered Self. As an autism-parent I realized that so many of us forget ourselves and what gives us joy. We spend out lives worried and frightened for our children and what the future may hold for them. But you need to try not to live that way. Plan and coordinate as best you can. Do what you can for your children. But a depressed parent, a parent who forgets their own humanity will not be a help to their children ever.

Related posts: 
From B is for Balance:

Balance. I would have to say that that has probably been one of the hardest aspects of life with special needs children. Oh not that you don't balance their lives. Between therapies, doctors, school, "typical" activities and just plain doing nothing, we all seem to be able to balance our children's lives. What I am concerned about when I speak to many parents of special needs children is the ability of the parent to balance their lives.

Yes, when you have a child your obligation is to make sure that that child has every advantage in the world. Yes, as parent you have the obligation to provide, nurture and support your child as they grow, develop and mature. Yes as a parent you have the obligation to ensure that your children thrive.

The problem that happens though is that we forget that we too are entitled to grow, develop and thrive along with our children. You do not cease to be a person because you are a parent. You do not cease to be a person because you are a parent of a special needs child. You do not cease to have your likes, dislikes, needs and wants as well.

This is when the balancing becomes important. You need to find the time to remember that you too are a person. Now do I speak from experience of being able to balance my life? Absolutely not. I speak from experience of NOT  being able to balance my life. I speak from experience of demoting my own importance. Read this mea culpa to see how sorely lacking I am in this regard.

Listen it is not that you relegate your obligations and the love you have for your child to the back burner when you do something for yourself. It is merely making sure that you remember your own humanity. Now what exactly am I talking about?

What I am talking about is that YOU are allowed to go with a friend to get a cup of coffee without the children just like parents of typical children do. You are allowed to have lunch, go to a movie and even have a date with your spouse. I am talking about reading a newspaper or a book that has nothing to do with autism, but may be part of a hobby that YOU love. I am talking about that it is OK to get a manicure and a haircut. It is OK to buy yourself some makeup if that makes you feel better. It is OK for you to go for walks, exercise and eat food that you enjoy, not just eating the leftovers from your child's meal. It is OK that YOU are not subsumed by your child's special needs. It is OK to still be YOU.

Y is for You

 My Happiness Project

Don't Lose Yourself

Life May Suck, But Your Are Still a Human Being




Until next time,



Elise





          


Friday, July 27, 2012

GO TEAM USA

Today begin the London Olympics....Here are some of the USA swim team having a little fun before the Games begin.,..




Go HERE for the schedule of events.



Until next time,



Elise

Tuesday, July 24, 2012

There is a Danger in Ignorance- hey @Morning_Joe I Mean You

I want to start off by telling everyone my husband, the hubby, aka The Wise Old Sage, really enjoys Morning Joe. He watches it every day as he gets dressed for work. I never liked it, but would watch it with him so we could have a few minutes together before the day got rolling. That being said....

I was wondering just how long it would take for some pundit, pseudo-psychologist or morning talking head to decide that the Aurora, Colorado shooter had to be on the autism spectrum. It happens every time there is a tragedy of mass proportions in our society. The first thing you hear is that the perpetrator had social issues, so ipso facto it means they had to be on the spectrum. I suppose what made the comments by Joe Scarborough so egregious is that he backed them up by saying his son has aspergers.

Sadly, people who watch his show are actually going to believe that he may be right considering his son is autistic. Because we all know that if you have a child with autism you are now the resident expert on autism or at least apparently someone who like Joe thinks he is. For who knows better about how every autistic individual functions than living with one person who has autism. The idea that if you meet one autistic individual you have merely met one person with autism does not register with the majority of society. They don't know about autism. But if that person telling everyone about autism, happens to be a former Congressman, TV news reporter and pundit, that makes what he says gospel. He of course would never say anything out of turn. Would he? You can read more about his statements HERE and HERE.

Yes the autism community reacted immediately. Whether through:
twitter
media announcements, (Here, Here) and
petitions.
The community, rightly, is demanding a retraction of his comments. So far I have not seen any retraction. If someone finds it please let me know. (See Update below.)

I think the main issue here isn't the fact that someone, somewhere, said something stupid when it comes to autism. We know it happens. What disturbs me the most is who said it, and the effect it will have on the lives of our children. When you are in the public eye you have a responsibility to use good judgement and to make certain that you do not cause irreparable harm to others.

While autism is discussed and the subject of many movies, TV shows and even PBS specials, people who do not live with autism or who do not know anyone with autism, quite frankly are frightened by actions of individuals that they consider beyond social norms. I'm not talking about a child with autism. I am talking about an adult with autism. While the ABC show "What would you do" did show a compassionate group of people in dealing with an autistic adolescent, my thoughts went to, what would the reaction have been if the autistic person was an adult? What would their reaction have been if the person were higher functioning but stimming? What would their reaction be if the autistic person was a full grown man, high functioning, having a meltdown because  he was overwhelmed by sensory issues? Something tells me that when a person grows up and is no longer someone society thinks is "cute" and can pat on the head, society loses sympathy. Especially when people are uneducated and an individual whom they respect are telling them to be frightened.

I am talking about society not understanding idiosyncrasies that characterize autism like types of stimming: hand flapping, finger drumming, humming, head smacking, hand biting, hair pulling, clothes/paper ripping or fidget toy holding. I am talking about voice-modulation issues. I am talking about becoming overwhelmed by noise, smells and types of lighting for those on the spectrum, which could lead to a semi-meltdown sometimes in public. I am talking about emotional disregulation and how it presents itself. I am talking about two grown youngmen who are 6 feet tall and over 200 pounds. Who are brilliant but can become stymied by the world in which they live. I am talking about my sometimes overwhelmed sons who people look askance at when they act out. I am talking about two very gentle, kind, sweet youngmen who would like nothing better than to find a way to make this world a better place. I am talking about how my sons have now been fingered as possible psychotic killers by someone with the soapbox of a Joe Scarborough.

Life can be daunting enough for my boys at times without having the added indignity of pundit stupidity thrown at them. Society is uneducated enough about autism and what it is, without added speculation from someone who thinks he knows everything but obviously knows nothing. Sometimes people really need to know just when to STFU. Especially those who wield the power of the media.

Meanwhile if I am anything it is proactive in my life and my children's lives. Yes, I took care of making certain that the college would know that the boys were not a danger to anyone or themselves when they entered.  I had them tested for college and retested last year. I made certain that the testing included propensity for violence, psychosis etc. I wanted to make absolutely sure that the college understood that the boys' "issues" were not a threat to anyone. Yes in this world you have to be ahead of the curve on that account. This was sadly, not the first time, some pundit said something stupid about autism and honestly,  I know it will not be the last.

I suppose the only thing that we can do for our children is to find a way to educate those around us and society in general when it comes to what autism is and is not.  In some small way that is why I do not celebrate Autism Awareness month, only because I find that we need to have autism awareness 24/7 in our world.  As I wrote earlier, we are autism awareness. And it is what society does for autistics in October rather than in April that counts. I guess I should have written its what society does in July instead, It is how society reacts to the stupid statements of someone who should really have known better than to continue the ignorant and harmful stereotype of those with development disabilities.

Another interesting issue here is, that if a pundit had demeaned  or promoted a stereotype of an ethnic group, race or religion,  they would not only be forced to apologize they would most probably lose their jobs. (No I don't need Joe fired. An apology would be good though.) You cannot denigrate any group or people without being held up to ridicule. And rightly so. But so far nothing when it comes to defaming every person on the autism spectrum. Oh his son is autistic so its OK? No it is not.

Belonging to one group or another does not give you license to slander, name-call or promote ignorance. It's no more appropriate for those in the "autism community" to deride and promote ignorance about others on the spectrum, than its OK for "As-A-Jew" Jews to throw out anti-Semitic-dog-whistles.  It's no more appropriate to deride someone on the spectrum because you have an autistic relative, then it's OK to promote antisemitism saying, "I can't be an antisemite, some of my best friends are Jewish or my sibling is married to a Jew." Or promote racist stereotypes by thinking I can't be a racist, " there are African-Americans who live in my town and I even celebrated Martin Luther King, Jr. Day." No one should get a pass when they promote fear and hate.

Shame on Joe Scarborough and shame on MSNBC for allowing this stereotype to go unanswered.

Until next time,


Elise

UPDATE: Apparently Joe Scarborough has offered a rather half-assed written response on the controversy..not an apology by any means... more of a "leave me alone, you are all dolts, and that is why I have to write this stupid stuff in order to get my bosses off my back" kind-of-comment.  HERE.










Monday, July 23, 2012

Flash Mob for Awareness

Flash Mobs are a huge national fad in Israel. The one in the video below, took place in the Mamilla Mall. It is an open air shopping center right in the heart of Jerusalem, Israel. Go here for a virtual tour. It also happens to be the go to place for dancing flash mobs. Watch HERE.

This particular flash mob is produced by ALEH. An organization that helps and supports the severely disabled. The song is in Hebrew, but I don't think you need a translation. The video speaks for itself.





It would be nice if there was an organization that thinks inclusion in the USA includes our children having fun and participating in every aspect of society, including finding a way to be apart of the latest national craze. Would be nice to see something like this on the streets of New York. Possibly on Fifth Avenue...what say you?

Walks for autism are nice and brings awareness, but I think its time we showed society that our children also know how to have fun. Everything doesn't always have to be so serious.

Until next time,


Elise



The Politics of Autism-This is a Safe Blog

This post has been in the works for awhile. It is the second half of my post about Thinking for Yourself. That post dealt with parental guilt, parental self-care and parental intelligence. Today I want to talk about the politics of the autism community and the marginalization of those that don't tow the preferred political line.

As my readers know, the purpose of my blog is to try to help parents understand their options in helping their children. I regale everyone with stories of what worked and what didn't work for my boys. I try to give practical advice for impractical situations. I do my best to remain upbeat, even though I do have my own moments of being overwhelmed. I turn noone away who needs help. I marginalize noone who asks for help. I don't care who you are and where you come from. I don't ask to see your political affiliation card, nor ask your religion, ethnic background or country of origin. The only criteria I need to help someone is that their child has autism.

But one thing I do notice in the autism community is that someone somewhere decided who the leaders are and who they are not. Which side are you on? Autism Speaks or the Self-Advocacy Network? Biomedical diets or strict conventional therapy? Homeschooling or inclusion or something in-between? Total societal revamping or preparing your child for the realities of societal norms? That there is a thing such as normal versus that there is no such thing as normal? Never even mind democrat versus republican...Obamacare care versus no-governmental centralized healthcare...Religion versus secular...Too many people have decided that you have to choose sides. Well that doesn't happen here.

Not that that really is a big deal, choosing, but when you disagree with these self-anointed powers that be, then somehow your voice doesn't get heard. That if you disagree with either side and the conventional wisdom of the day, a maelstrom ensues. But not one that is loud and boisterous, but one of deafening silence, where your thoughts, opinions and cares go unnoticed and disrespected.

It's more than an extension of the politically correct crap that we see everyday. This is more than the nonsense children face at school and on college campuses where certain opinions are ostracized and people made to feel less because of their belief systems. This goes so far as to deny people the right to choose how they want to bring up their children and what they will do to protect their children. Each side even tells you what words you may use in a conversation and how you are to refer to your child.

No, I am not against the movement to stop name-calling. Having been the victim of on-line bullying it is not fun at all. But I am tired of the fact that some people out there, in whatever universe they inhabit, think they can tell you how to discuss, approach and intellectualize a personal situation. Because let me tell you something, raising a child, especially a child with a disability is a hugely private endeavor. One that is fraught with uncertainty, fear and a search into the unknown.

People need to feel safe when they ask questions. People need to feel free to use whatever language they want. People need to feel free to grasp at ideas, thoughts, notions, perceptions that they think will help their child. Name-calling, marginalization, self-righteousness and quite frankly a pole-stuck-up-your-butt does noone any good. No one person has all the answers for someone else. Life just doesn't work that way. I am tired of all those out there who think they know everything and its their way or nothing.

Listen, I am tired of watching everything I do and say when it comes to the autism community for fear that someone somewhere is going to get their knickers in a twist. I am afraid its not going to happen anymore. I am from this moment on declaring my adulthood. All are welcome here. No one need be afraid to ask anything and everything in anyway they want. There is no judgement on this blog. Except if you come here with a chip on your shoulder thinking you are better than everyone else or your choice in parenting makes you a better parent then someone else (that includes celebrity and non-celebrity types). These ideas are just terribly hurtful and denigrating. These ideas are anything but helpful and will not be tolerated.

There is one more very important caveat however:   I will warn you, if you promote harmful medical procedures, I will not accept that as a parental choice. There is no such thing as hurting your child in order to help them. I have no issue with asking about these procedures. I will point you in the right direction, but do not think that they are accepted by me simply because everyone is welcome here.

I know there have been calls for unanimity in the autism community but it is never going to happen. When you have at least two people in a room you are going to have varied opinions. The best we can hope for is that people do not sabotage each other, and that respect will flow to one another. Maybe someday somewhere there will be a cohesive view of how to help those with autism. But I do not see that anytime in the near future. And truthfully, when there is only one modus operandi for something that generally leads to stagnation and atrophy too. The way to keep moving forward is to constantly question what you are doing and how helpful is your regime. You can't do that if there is no leeway in protocols.

But in the meantime, let me reiterate:  this blog is a safe place for questions, ideas and thoughts. There is only help here and no judgement.

Until next time,

Completely politically incorrect,


Elise




Sunday, July 22, 2012

National Food Study

The US Department of Agriculture is funding a study of where people in the US buy their food, whether they have access to healthy food and how much it costs. Read about it HERE.

I had actually never heard about the study until one day, someone from the USDA showed up at my door and told us we had been chosen at random to participate. She then asked if we were interested (of course after showing me her ID) and  I said absolutely we would help.

It is a week out of our lives to let the government know what kind of access we have to food; what kind of food we are able to buy; where we buy our food; most importantly too, how much it costs. The woman from the USDA also told me that this study would be used to make certain that our area received the right amount of food stamp support for needy people. Seriously, how could you not want to help with that? Why would I not want my federal tax dollars used to help my fellow Americans be able to afford descent food for themselves and their children?

I remember a few years ago I was in the market and the family in front of me, with a baby about a year old was using food stamps to buy nutritious food for their child. Actually I think it was WIC stamps. They had a hard time understanding what they were allowed to buy and not buy so several people from the store were helping them. The personnel kept apologizing to me for taking so long. I replied, "Get the baby what he needs and I can wait." Inside I felt good that at least some of my tax dollars were going to do something good instead of paying for self-indulgent political class bullshit.

The market did give me a ton of coupons for my patience. I didn't ask for anything in exchange, didn't expect anything. Was quite content to wait. But the cashier seemed rather taken with the fact that I was concerned about the young family and was not being a bitch. Leads you to wonder about some of the nastier people that they face in the market.

Listen, that baby needed to have the right nutrition to learn and educate himself. He afterall is going to inherit this country along with my children and I want him to be as productive as I want my own children to be. Yes, sometimes you do have to support and help others. Those who rail against the safety net are short sighted and quite frankly just plain mean. Also, one more thing...what makes you think that it couldn't be you one day? There is not guarantees in life. You can hope and pray it won't be you or yours but noone has a crystal ball..even Yoda can't always see the future.

Honestly, hunger is a real problem in this country.  My SIL volunteers at the food bank for the backpack program. This is where they pack dinner for needy children to take home at night so they have food for dinner. They also pack up food for the weekend meals for these children as well. I had originally looked into getting the boys to volunteer for the program this summer, but it didn't work into our timeline. So the boys ended up at the Audubon society helping grow fresh food for the food bank instead, among other duties they perform for the environment.

Anyway here is what we had to do this week for the study:




1. Every purchase has to be logged...supermarket, convenience store, dunkin' donuts, starbucks, vending machine, movie theater.

2. Every adult in the house has a book with one main book for the overall lists.

3. You scan the supermarket purchases if you can. If there is no barcode you can turn to certain pages that might have food and fruits listed. Worse come to worse you just list the food and how much it cost.


supermarket sheet

daily page of where items are purchased

snack list sheet

barcode scanner

I have to tell everyone I had so much fun using the scanner. I know it is silly, but hey its the little things that can give us joy right? And I love how technology works and makes things easier.

Anyway, today is our last day and Monday we will turn in our data. The interesting thing is that we had done our monthly large shopping the week before and they didn't want us to go back wards. So what I did was go early to the huge box store and supermarket so the government has an idea what we usually buy and how much it costs. Luckily alot of what we buy doesn't go bad and quite frankly even the fresh food doesn't really last long in our home, not with three adult males living in the house anyway. We also don't usually go to the movies, but the boys went this weekend and hubby kept the junk food receipt. We also don't tend to buy Sunday morning bagels but are doing it anyway, not that they won't be eaten. But I also think the government needs to know how much,  even the most simple food and the most inexpensive drinks, all costs in this area.

OK, I don't really know if this is cheating or not. But if the government wants to know what you can buy in a week then you have to buy the items. They were very specific about it being items that are purchased, not items consumed, so anything that was already in the house did not count for the study. In the end then, we are giving them what they need to know. It's not like we are making up the numbers. Just doing our shopping earlier than normal.

I hope this helps people in the country and I hope that the government uses the data to make sure that people have access to healthier food stuffs. Yeah I know, there will be those who still say that the government will use this to divide the nation and promote class warfare or use it for the coming political election season....I know they may not be entirely wrong. But I keep thinking of that baby and young family in the market who were using the WIC stamps. If in the end my tax dollars will go to help my fellow Americans feed their children then I don't care how the venal may use this study. To hell with the cynical. Lets work on  making sure that in the richest nation in the history of human kind people stop going to bed hungry.

Meanwhile, one of the more fun aspects of the study was that the hubby's first job out of law school was for the USDA. His job consisted of reviewing documents for nuclear power plants. No he doesn't have an engineering background and no he has no idea how nuclear power plants work(ed). He just reviewed the contracts.  But that's a story for another day, after everyone has had something really strong to drink.


Until next time,


Elise


Wednesday, July 18, 2012

"I'm In My Rebellious Stage..."

Last night at dinner our conversation revolved around why CM2 does not like interference in his life. Well more specifically, why during their volunteering, when CM1 tries to help his brother with advice or information, does CM2 get angry with him. We tried to explain to CM1 that its not him personally but that his younger brother appears to resent any kind of help and perspective other than his own.

When asked why he rejects anyone's advice no matter how positive or helpful CM2 answered..

"I guess I just came late to that rebellious stage."

I then asked,"If you know you are being rebellious why do you just reject suggestions out of hand and not think about what you are being told is helpful or not?"

For that I got the "talk to the hand" response.

Deciding not to have a full-blown fight and argument at the dinner table, we then turned to CM1 to try to explain to him that there comes a time in people's lives that sometimes they need to learn the hard way. Unfortunately there is this time in the life of a teenager that they decide not to listen to anyone. There is nothing you can really do about that except let them. (Within reason of course.)

CM1 is now, totally insulted that is brother rejects his advice. He sees trying to help CM2 over the glitches of adolescence as his form of caring about him. In truth it is, and the rejection does hurt. But we assured him that it was all well and good, but that right now he needs to only truly worry about himself. That yes, he went through a similar stage at about the same time and he turned out just fine. So will his brother. CM1 insisted that his brother needs to see the behavioralist like he does. For that I agreed and talked to her about starting with CM2 in the fall.

Meanwhile, hubby and I are on top of CM2 watching what he does and how he reacts in class. We do talk to him about how he interacts with people and how he studies. We are not letting his "rebellious" stage go uninterrupted. As hubby told both boys last night, just because the two of you are brilliant doesn't mean that society will accept you. You need to learn how to deal with and interact appropriately with people. You can be brilliant but live your life in our basement if you don't really pay attention to social norms. No one is required to ever have anything to do with you and people generally don't interact with shmucks.

Last night's lecture was prompted by the fact that CM2 yelled at some female students in his summer class. Apparently these girls had the nerve to play Justin Bieber music..I know the horror....apparently CM2 had turned to them and yelled at them to turn that crap off (which they did).....The hubby lecture consisted of CM2 practicing how nicely to tell them that they are being disruptive as everyone else was trying to work. Hubby made CM2 repeat it several times. Honestly its really lucky for CM2 that he is cute and that everyone around him continues to cut him some slack as he learns how to deal with the real world.

The problem with this youngman is that he just is too smart for his own good at times....."rebellious stage" by tuchas...

Still trying to figure out how to deal with the "talk  to  the hand" reaction....I think this is one for the hubby to figure out. Yeah CM2 did get lectured about it last night during the "Bieber" discussion too....Hubby said never again "talk" to me that way....

So far this morning so good..no "talk to the hand" and no "rebellion" excuses...we will see what happens as the day goes forward...but tonally he definitely has no patience for my existence...thankfully today is pragmatic speech therapy day. Yeah she noticed the tonal issues right away...glad that its really not me being over protective and that I noticed it is something he needs help with.


Until next time,


Elise


Friday, July 13, 2012

It's Not "Why" You Should Be Asking, It's "Why Not...."

I am going to start off really honest here...the idea for this blog did not come from me, but from a review of a book I just read...The After Wife, by Gigi Levangie Grazer. You might be familiar with her name, she wrote The Starter Wife, which was turned into a TV series. The protagonist in the present book, after suffering an unexpected trauma in her life, continually asks "why." "Why did this have to happen to me, to us?" until someone (or something) replies "why not you."

The truth is that I realized in twenty odd years of dealing with autism and all the comorbid, conjoining issues that go with it, I always asked "why."

"Why my child?"

"Why did everythign have to be so hard?"

"Why is there so much difficulty and so much pain?"

Well you get the picture. This, by the way, is not the same kind of "why" when trying to figure out if you are at fault, if your husband is at fault, if you both are at fault, if its something eaten, drunk, ingested or breathed that gave your child autism.

I am talking about  quite honestly the very selfish kind of  "why."

Truly, what makes any of us think we are immune to reality?

Are we better than someone else?

Are we more righteous than someone else?

Are we more deserving of a "typical" life than someone else?

So we are then left with the reality that if there is no true answer to "why mine," the alternative has to be well..."why not mine."

I think that our inability as a group to ask "why not," is the outgrowth of this entitlement society that we have come to know as western culture. We think that because we have modern medicine, technology, and in-door plumbing, that somehow, in someway, we are entitled to a life devoid of complications, trauma and angst. We decide that life has to be fair. That the issues we fear most in life, should happen to someone else. It can't happen to me, well, well, well.....well it just shouldn't.

Yes I know, there are people in this world that do deserve a bad life. The cruel and hurtful, (especially those who have been evil to your child), the dictators from hell itself...yes they should have trauma deep inside their bones, but that is not how things always work out. In fact, from my limited experience that is generally NOT how things tend to work itself out.

I suppose this is when we need to show our metal as human beings. Sartre said that "we are our choices." I agree with that. But I add on a bit from him...it is also how we handle the cosequences of our choices and the "curve-balls" that life throws our way that decides if you live a good life or a very poor one. You can live up to the challenge or live life a shell of a person-angry, bitter and hateful.

I acknowledge that there are plenty out there that do this so much better than I ever could...
The woman I met on the train one day years ago, who on the anniversary of her daughter's death from breast cancer, was going into Memorial Sloan Kettering to counsel and help parents of newly diagnosed children. HERE
The parents of a young teenager murdered in a Palestinian terrorist attack in Jerusalem, who started a foundation for disabled children in their daughters name..opened to all- no political questions asked...HERE

Once you get to the point that you recognize that you are NOT entitled to anything in this world, except the chance to try to make this place a better one for everyone you come in contact with, will you then understand your true worth and value as a human being. You will also be able to answer the question "Why not..."

Meanwhile, I just ran into one of the boys' paras from public school. She told me that her 15-year-old nephew is dying of bone cancer. Now this is when you need to ask "WHY," in that very selfish, human sort-of-way. Warning....don't whine to me today about nonsensical crap.


Until next time,


Elise

Read:  Daily Gratitude Without the Drama






New Safety Device-SCAN IF LOST- READ THIS

From the National Autism Association

ChildIDcode – and my new BFF!

Posted by on Jul 12, 2012

I get emails and phone calls almost daily from for-profit companies pitching their products. Let’s face it, with the autism rate now at 1 in 88, we have become a huge market share of consumers.  Our kids have become a commodity.  To my disappointment, 95% of the folks who get in touch tell me how much they care and how they sincerely want to help families affected by autism – and then ask me how NAA can help them sell their product and make money from the incredibly financially-strapped autism community.

As my eyes roll back in my head, I’m thinking, “Dude! We’re a non-profit, not an advertising agency.  You should be asking how YOU can help US!”  As the conversation continues, I suggest ways they can provide real help to families affected by autism, if that is their true intent.   Would they like to sponsor our programs that provide direct assistance to families?  Would they like us to distribute their product for free to families in need?  Would they like to offer a discount on their product to families who find it via NAA?  Would they like to donate a percentage of their profits to our Big Red Safety Box program?   I think you can see where this is going.

So imagine my surprise when I received an email two days ago from a gentleman named Eric telling me about a product he’s developed that folks have told him may be helpful for kids with autism.  He said if it will help keep our kids safe, he doesn’t want to make any money on it at all, he just wants to make sure that it is used by the people who need it most.  HUH?  Is this guy for real?
So I called Eric, and he introduced me to childIDcode.  He’s developed technology that can create a QR code that can be read by a smart phone even when cell service or WiFi is unavailable.  A unique code is produced for each person and printed on special high-tech stickers that are water-proof and extremely durable.  The stickers say, “Scan if lost”.  When the code is scanned with a smart phone, two emergency telephone numbers are displayed and can be dialed automatically.  I was impressed!

What a great tool for parents of kids who wander or bolt – especially for those with sensory issues who cannot tolerate an ID bracelet.  If a member of the public or a first-responder found the child, they could immediately get in touch with the family. These would be awesome for school field trips, vacations, even daily trips to the grocery store with our kiddos who tend to bolt – place a sticker on the back of your kid’s shirt and go!  My wheels started turning and I mentioned to Eric that I thought it would be even better – especially for our kids who are non-verbal – if the code could let people know that the wearer has autism.  In less than 24 hours, Eric and his programming friends made that happen for us!

These special childIDcode stickers for kids with autism are now available exclusively through NAA.
When scanned, they will read, “I Have Autism” and display a caregiver’s emergency telephone number.  To introduce the product, Eric has given us 50 5-packs of stickers to give to families for free. You can get yours here, while supplies last. (Sorry, our system can’t process an order for $0, so please donate a buck to NAA to get your free stickers.)  And moving forward, NAA will be offering childIDcode stickers in packs of 10 for just $4.99 – this is 50% off the retail price, and available exclusively to autism families.  Even more amazing, is that childIDcode will not take one penny in profit on these items – they are donating a full 100% of the proceeds from each order you place to NAA’s Big Red Safety Box program to help us protect even more kids from wandering.

So you can see why this super-cool dude from San Diego who I “met” just about 48 hours ago is my new BFF.  :-)  There ARE people out there who genuinely care about our kids and truly want to help.  My heart is full of hope today. Thank you, Eric!

UPDATE:  The 50 free sets were GONE in 25 minutes!  You can buy packs of 10 for 1/2 price here, with free shipping: http://nationalautismassociation.org/store/#ecwid:category=2416355&mode=product&product=13535805

For those of you who would like to order stickers for children who do NOT have autism, you can order at http://childidcode.com.


Monday, July 9, 2012

I Hate to Say, "I Told You So"...But I Told You This Would Happen

Last week a hug hullabaloo came about because rap superstar 50 Cent tweeted a disparaging remark to a follower by saying he didn't have to listen to that person because they looked autistic. Of course the autism community, led by Holly Robinson-Peete came after the singer to show their antipathy to his ignorance. There was Holly's letter and a tweet your child's picture campaign, #thisiswhatautismlookslike to show 50Cent just what autism looks like...Atleast noone in the community took the offense lying down.

But really what did everyone expect? I wrote about the use of "autistic" as a slur in the movie 21 Jump StreetI said then that it was going to be used to replace the "r" word as the "insult du jour." And alas I was correct. 50Cent wouldn't dare use the "r" word. That would not be seen as politically correct. But denigrating autism, well if Hollywood bigwigs can do it and make millions why can't he?

I understand that the singer has apologized. First came a lame excuse saying he had anger issues that got him placed  in special education as a child. Then because that didn't get the response of forgiveness he expected and the publicity got worse, I guess his PR people said to really apologize. So he did.

The problem here is that we live in a culture that its fine and dandy to name-call, bully and denigrate someone. It is done with impunity all the time.  Politically it is out of control. Culturally it is in our television sets, reality TV offers quite the variety. Women are continually denigrated throughout modern music genres, being called "bitches" and "whores," or implying that rape is better than real love.

There is no sense of propriety and no sense of shame anymore. There are no boundaries of right and wrong. Society has the belief that if you think it, you should say it. If you feel like doing something then just do it. Virtually every act is considered of equal import and should be guaranteed equal protection.(Not talking constitutional law here)

But the truth is, no every thought or action is not equal, acceptable nor to be respected. Society needs to remember that how a person conducts themselves goes along way in promoting your views and in promoting your beliefs systems. There are rights and wrongs in how we treat each other and that should continue to be enforced. Those who abandon "respect" for their fellow person should not only be called to account but they should know that they will be marginalized, especially the rich and famous who are today's social icons.

Then maybe a person with fame and fortune, who is an idol to millions upon millions of young people, will not think its OK to bully, mock and denigrate another human being. He or she will think twice before they tweet, post or blog, and instead teach their followers what it means to have class, elegance and respect for others.


Until next time,


Elise

Some more of my posts about culture and its acceptance of bullying:

Simon Cowell: A Culture of Rude and Your Autistic Child
Adult Twitter Meltdown...Cue Name-Calling and Bullying
Political Bullying: We Wonder Why Kids Are so Mean
Balagan and Bullying
Bullying of an Autistic Kindergartener By a Dairy Queen Employee
Watch This Video
A Cyberbullying Asshat
Ignorance Associated with Using the "R" Word 
20 Years and Counting- The Americans with Disabilities Act



Sunday, July 8, 2012

Sorry, You Really Can't Have it All: Stop Bitchin'

I have been mulling this one blogpost over and over for a few weeks now. AnneMarie Slaughter (who gave up an important position at the State Department and went back to teaching at Princeton-"oh the horror") wrote an interesting post for The Atlantic complaining basically that she couldn't save the world and go to her sons' little league games at the same time. Read HERE. Of course the majority of those who commented wrote...."right-on sista."  Jeffrey Goldberg, who is also an Atlantic blogger, answered her in this article in Bloomberg  HERE.

I left this comment on the Goldberg post:
I have been hearing this whine from women like Slaughter for decades now. Spoiled and entitled. The reality is that you CAN have it all, not just at the same time. We all go through different periods in our life and we must chose at each time what is most important to us.  What would this women do if she had real issue with her children, say if one of her children were special needs? She is so worried about fulfilling her own destiny that she forgets that once you chose to have children it is their destiny you are required to help make a reality. You chose to bring them into this world and yes, they do come first.

By the way, my husband would also like to be home more and spend more time with his children, but someone has to pay the bills for food, clothing, shelter and all the little extras like therapy, tutors and doctors galore.  I have very little patience with those who think it is all coming to them...Slaughter needs to count her blessings and quite frankly grow up.

Perhaps I am being over critical, if I am let me know. But the reality is that I believe we have become a society where we think we are entitled to have reality fit into our world rather than fit  ourselves into reality.  Now don't get me wrong, there are alot of things that needed to be changed and still need to be changed within our little hemisphere of this orb called planet Earth. But when you chose to have children or you choose a particular kind of career, you had better think long and hard how it is going to effect every area of your life.

If you chose to go and save the world, you can't just tell the Syrian government to stop slaughtering its people because "Janey has a ballet recital." Or tell those dying from famine in the southern horn of Africa to stop being hungry because "Johnny has a speech to give in church." Honestly you don't even need to discuss this reality on such a grand scale. If you have a business and a client says to you I want 300 widgets by Monday and it is Sunday morning however, you only have two hundred widgets, then whatever plans you had with your family for that afternoon are shot. You get your butt to the office or factory wherever you have  to go to get it done.

Oh you say it should not be like that. We should all live in a little utopia, where family and children come first, meanwhile we can all become world saviors and millionaires without giving up something. Fine you can also bring along your leprechaun pot o' gold, your unicorns and fairy dust as well.

Perhaps it is because as a special needs parent I am more than used to giving up plans, ideas and desires simply to get my boys where they need to go. But that was also my choice. I suppose I could have had a driven-career with little or no time for the children. But I chose to raise my own sons. Not to let someone else do it while I found myself. I wasn't one to allow them to be raised by a nanny before it was known that they had developmental issues, I certainly wasn't going to let someone else be in charge of their day to day progress once the extent of their issues became known. And yes it was my choice. I accept the outcomes of this choice and all that it entails.

Listen I am not complaining by any means. I think its part and parcel of being a grown up. You make choices and accept their consequences. (As Sartre said, "we are our choices." Afterall it is how we handle the consequences of our choices that shows our true metal as human beings.) When you make a choice you need to understand that that choice has repercussions. One of the outcomes of becoming a parent is that you are obligated to make sure your children have the best possible start in life. Furthermore, you are obligated to continue to support them until they are truly able to take care of themselves. If you have to give up your dreams, well so be it. I know everyone of you special needs parents understands this. HERE.

Perhaps it is understanding that there are things more important than yourselves or your need to "fulfill" your true inner self. I actually never really did get that part either. True inner self..what the heck is that anyway? If I waited to figure out who my true inner self happened to be then quite frankly I'd still be sitting and reading Cosmo Magazine. Which quite frankly was already an annoying waste of paper back in my college days when Helen Gurley Brown was the editor-in-chief. (With all do respect to Ms. Brown who was truly a feminist pioneer.)

In seriousness now, the truth of the matter is that most women who work have to. It is no choice. If given their druthers I believe most women, and some polls prove this, would stay home with their children. Women work, not to fulfill their inner selves but to buy the necessities of life and to be able to take care of their families. There are many issues that women face on a daily basis when it comes to taking care of their families. Affordable, descent child-care comes to mind as the preeminent. Maybe even a boss who will be understanding when a child is sick. An economy that doesn't make it more expensive to buy fresh salad than potato chips and oh yeah, gas back at $1.50 a gallon would help to. But none of these are really Prof. Slaughter's issues.

I remember an incident when the boys were little. I had had a year of physical hell, from car accidents to emergency surgery and we hired a service to clean the house. I couldn't do it and hubby couldn't keep up with the housework once he got home from the office everyday. CM1 thought it was cool that the ladies liked to do their work cleaning other people's crap. I assured him that they clean because they need to feed their families. It is not fun or enjoyable cleaning up after strangers. That noone says one day "hey I want to be someone's servant." It was a realization to him that there are things you sometimes need to do (legal things) simply to exist in this world. He has never forgotten that lesson by the way. It was the beginning of his understanding of the world around him. Yes the boys still live in a little cocoon, but that is OK too. That is what we work for on a daily basis. All of us parents. I don't think your children need to suffer to learn. Understanding the world around them comes through thought and care too, not always through individual trauma.

I think the reality is that in so many ways people like Ms. Slaughter live within a dream world that only include less than 1% of the 1%. We who live in the developed world and have access to the best things that humanity has to offer seem to constantly complain about issues that quite frankly don't even hit the radar for the rest of the world. Yes, its back to my "first world" worries. Well the "first world" issues of the top 1% of the top 1% of the planet anyway. If these women had real life threatening issues to worry about (like starvation, surviving war atrocities, gender apartheid or a real illness in the family) then perhaps they wouldn't worry so much about themselves and their inner-self.

The truth of the matter is you can't have it all. HERE. Something has to give, either time with your children or a lesser career. . And yes if you are going to have a high powered job at the State Department trying to save the world you are going to miss your kids growing up. By the way maybe these women who complain need to realize that men also give up these parts of life too. You don't get a pass on career requirements because you have a vagina. Some feminists they are. Feminism was all about allowing women into the working world, no glass ceiling. Now they complain because they are there and its not bending to their desires, needs and wants. If you can't do the job do something else. Sometimes you get what you wish for and it really is not the fairytale ending you thought it would be.

Oh and one more thing too...where is the husband in all of this or the children's father? If you are married why isn't your husband taking on some of the care responsibilities? Why are you the only one cleaning the house, doing the chores and cooking for everyone? But I don't think this was her point. The author's point is that it has nothing to do with her husband and the time he puts in with the children. It is her time and what she chooses to do with it that counts. Again it is all about her.

Too much of that going around in the first world quite frankly. Something is very wrong that her complaining is met with such acceptance and resounding applause. Spoiled, entitled and self-centered people. Thankfully I can openly say that no Anne-Maire Slaughter does not and never will speak for me.


Until next time,



Elise


Wednesday, July 4, 2012

"Science" of Autism-Who Gives a Crap-Practical is What Counts

Actually this post came to me in the middle of the night after drinking a margarita in celebration of Fourth of July. I know, the most amazing things come to mind when your brain is marinated...and yes it was only one (it doesn't take much to get me buzzed. I am defintiley a cheap date). But it was a margarita of my making, not one of those frozen concoctions..the real thing and no, I don't go light on the tequila.

 Ingredients
  • 2 shots of tequila
  • 1 shot Cointreau
  • 1 shot freshly squeezed lime juice
  • Salt and lime wedge, to serve
I use Triple sec instead of Cointreau (its just a cheaper version of an orange liqueur)....Also play with the ingredients a little bit. I stick with the rule 1/3, 1/3, and 1/3.  I also don't add the salt rim.....Seriously who needs the bloat the next day on top of a  hangover?

But what came to me is the fact that I am tired of all the scientists and the doctors looking at my children as some kind of medical experiment. Now I do know that in many ways they mean well. They are trying to figure out what causes autism; what the brain chemistry is like so that they can ameliorate some of the more devastating effects of autism; or even trying to figure out how best to help those with autism live better, happier and more productive lives. The issue for me is that they don't actually ever come up with anything that is useful for our day to day world. We do that on our own. It's why, you may notice, that I only review books/activities that come along with practical information. Nothing sciencey or highfaluting. I lost patience with all of that years ago.

So here is some advice I have for new autism-warrior parents or even some who have been at this for awhile....ignore "the experts" for the most part and find out what helps your child and works for your family.

Step One: Examine your environment. Does it benefit your child? If the answer is yes then keep things the way they are. If the answer is "no" then take a good look at your house and ask yourself these questions? (By the way all questions should be viewed from an age and developmentally appropriate angle)

a. Is the house safe for my child? Yes its baby-proofing for older chidlren but it is necessary.

b. Are there the child protective locks and alarm systems if need be? Unfortunately this can be very expensive, but if your child is prone to wondering it is a necessity. No you cannot nail shut the windows that is a fire hazard. I would even recommend talking to a local fire house/emergency services group/police about your child and getting ideas from them about safety as well. Some police departments even have a registry for special needs children so they know who they are if found or especially when they get older and may not act age appropriate (this is good for physically grown children, in fact I would even say this may be a necessity.)

c. Is there a sensory area for my child to help with meltdowns or even for time outs? This would be a corner in your house full of beanbag chairs or cushions, as noise proof as possible (maybe some "white noise"), no odd smells and where a small child could even take their clothes off if they want. Something so comfortable the child may feel safe and cocooned from the outside world. It does seem counterintuitive if you are trying to include your child in society to create a place without any outside contact but believe me when I say that everyone needs this, even we do at times, we just understand how to create our own space without any help or support.

d. Are there activity items that are self-reachable or are they dependent on me for continued entertainment? Fostering independence is important and is something that should be done slowly and carefully. It is important that your child learn how to engage themselves in play without you having to plan every moment of their day. This may be easier said then done. However, it is a skill they can and need to learn. Initially if they are overwhelmed by their choices give them two things to pick from..if they can't chose then help them learn to decide how to decide...slowly over time they will understand how to chose and how to work on their own when they want to.

e. Can they get themselves drinks or snacks on their own? Is this accessible for them? Again independence needs to be fostered. They should learn how to take a juice box or sippy-cup drink that has been set up for them. They should not have to ask each and everytime they need something. Learning to understand their own bodies when they are hungry or thirsty and then managing for themselves is a big step to personhood. Again this is over a long period of time. Each step they take may be minimal but you need to have it organized appropriately, especially for older children (honestly, its only fair).

f. Can they use a computer or game system independently? Figure out the protocols in your house surrounding the use of the computer, game system or ipads etc. Teach your child what these are and then let them learn how to manage their time. (Again this is a long-term goal. My boys really didn't get a handle on this until well into highschool and honestly the entire protocol had to be reworked once they entered college. But learning began as early as kindergarten.)

g. Have you set up schedule clocks? Timetables? Charts? Reward system? It is very important that a child understand their boundaries and the rewards and consequences that go along with everything. Don't think that they are going to remember anything, even if they have amazing memories. For some reason they might have these genius level memories when it comes to their videogame passwords but still will not be able to remember to brush their teeth..or how to tie a shoelace. It is all counterintuitive I know  but that is the reality.

Step two: Examine their educational situation and goals. Ideally this should be created with the IEP team and/or the teachers involved. However, if you are having an adversarial relationship with your district do this on your own, if for no other reason then to provide information if you need to go to court.

a, How does your child function in the classroom? Can they function in the classroom?

b. Is the classroom sensory friendly? Lighting, smells, bathroom, chairs, toys, computers, rugs, etc

c. Does the classroom meet your child's needs? Is there access to the teacher? Placement at an appropriate table? Seated with children that are accepting and friendly?

d. Is everything your child needs accessible in the classroom? This is when you look at everything from an occupational therapy point of view. Ex: Fine motor control may be needed to open a door, hold a pencil or get into a cabinet. If that is a problem are there devices in the room to help foster your child's independence so they can be like their peers?

e. Is the teacher/para trained,or have extensive background, in understanding autism/SPD/ADD/OCD/epilepsy.etc?  Note: This may not always work out the best. One of the teachers I had to threaten my district over had an extensive autism background, Her problem was that she refused to deal with my son as he was, not as she decided it was going to be and wouldn't work with him appropriately. Another highly trained teacher thought that he knew better than anyone else and reworked  CM2's well-thought out program which set my son back terribly in his education. (This "teacher" decided he was going to be a hero then declared my son "cured" and had no more problems. He recommended no special education services at all..this was my first foray into the legal side of special education and yes we won big time once we presented our case to the district director.) So this can be a tricky situation and one that does need to be monitored. However, all-in-all over the years, I have found that those with more of a background/training in autism did understand and work better with the boys.

f. Are the educational goals being worked on or ignored? Is your child really learning what they are supposed to be learning or are they held to a lower standard than they are capable? Are they challenged? Are they taught how to self-help through their disability? Are they taught coping skills and social skills-especially social skills in unstructured situations like recess and the lunchroom? Does the educator understand that one time is not necessarily enough in teaching your child a skill?

g. Do the accommodations meet their level of functioning or are they just given pro-forma accommodations? Is everything basically tailored to your child as it should be? Are the accommodations a help or a hindrance? Do they support their learning disability or create a dependency where one should not have to exist?


So these are just a few of the questions you need to continually ask yourself when creating a program for your child. The scientists will not tell you this. Even the practical theorists will not tell you all of this in one shot. You need to organize this on your own. Cobble together the information and make sure it all is the desired fit.

I would associate this with buying a couture gown. Each gown is honed to the body of the owner. It is specifically fit for only one person. So should your child's program fit only them, Remember every aspect of your child's life plays off the other. Everything, from home and school is intertwined. Everything should be consistent, and teach the same skills the same way.

The interesting thing about these ideas is that I don't think for neurotypical children the issues are any different. The difference lies in the fact that noone really talks about it. It just gets done, simply because the NT child can pick up naturally what we need to make a concerted effort to teach our children. That's all.

Honestly, it is in this regard when all parenting becomes simply a natural phenomenon. Something you understand, feel and know at the deepest part of your being. That is why we don't always need the scientist/expert to tell us what needs to be done for our children. We kinda, sorta already know what is needed, we aren't just always quite sure how to go about doing it. Now that is when practical advice comes in handy at every age and that is what will help our children function in the long run, not some esoteric question about causation, catalyst, genetics or whose fault it is that your child is autistic.

Until next time,



Elise






Tuesday, July 3, 2012

Sunshine

Matisyahu, one of my favorite performers, has a new single.

Here he is in my old favorite for Friendship Circle....




Here is his new song SUNSHINE...it reminds me to be happy and to seek the future.. how perfect....and yes he looks a little different...read here why.





Until next time,


Elise

Monday, July 2, 2012

Adult Twitter Meltdown...Cue Name Calling and Bullying

key words:
mensch...a descent person, respectful and kind
balagan..a hullabaloo, a mess, the world turned upside down
kvetch...complainer


It never fails to amaze me just how infantile adults can become on social media. Heaven forbid if you challenge their sense of their own importance. All heck will break lose. Case in point, this morning:

A rather well known conservative  had tweeted about the recent Supreme Court ruling calling the Chief Justice a coward. Now what ever you might think of the ruling, Roberts is many things, a coward is not one of them. So I wrote back just that and I also added that he needed to not call names. That name calling is bullying. (You can read some of our interaction on my time line HERE  if you like.)

Oy va voy...his meltdown of the day ensued. He called me a  lefty, and a bully. I guess this rant made sense to this interlocutor since according to him, it was the Left "bullying" of the Chief Justice that got him to change his mind, not that Roberts can think for himself and make his own decisions. I mean Roberts is only one of the preeminent lawyers of our time. I suppose accordingly to this individual that means that Roberts has no ability to think, analyze and function on an adult level.

Needless to say I answered telling him that I am from a family of Reagan republicans, a constitutional and civil rights lawyer and before he attacks people he really needs to learn something about them. That actually just seemed to set him off more. He accused me of hiding behind a pseudonym and said I wasn't being taken seriously if I don't use my real name. I then of course did the mature thing and wrote back that if I am not to be taken seriously why is he responding to me?

Someone attempted to intervene between us but to no avail. The meenie-tweeter just wouldn't stop and didn't apologize when I called him out once again for his bullying. Oh and I did tell him he was being whiny and unmenschy too.





Listen we are constantly regaled about the Left and their use of nasty tactics and bullying and name calling. Look at how they talk about Sarah Palin, or even more recently Anne Romney. Problem is if you don't like a tactic don't use it yourself. Be the person you think you are.

After writing about this on facebook, one of my FB friends wrote this:

" ...Wow! It's really sad that we are teaching our kids not to bully & name-call, but adults (especially when speaking about politics) bully/name-call those who have differing opinions. Way to be a good example to our young people! :-/ "

In all seriousness, how are our children supposed to learn to not bully when the adults in this world use it as their weapon of choice?  People write how the culture has been dumbed-down or that there are no boundaries anymore. Well truth be told, there are boundaries if you set them, stick by them and stand up for your principles in a civilized and respectful manner. 


No I am not upset about this morning. More bemused in fact. With the news media lying and editing tapes the way they want; with spin doctors playing fast and lose with the truth; with politicians and pundits displaying infantile behavior (from calling you a racist to a Marxist), is it not a wonder that CM2 thinks his vote means nothing? He has decided that all adults are morons and that noone really cares about the future. This is CM2's first Presidential election and he is thinking about  sitting it out....shame on the political class.


If we are ever going to solve this nation's issues, we are going to have to have a forthright and honest discussion about what needs to be done and how to go about doing it. This reality takes grown-ups, something I see completely lacking in our society today on both sides of every issue.

Honestly, all I see is adults name-calling and bullying. Not able to have real open dialogue without trying to deflect and divide.  By the way,  these hurtful and hate-filled actions are the last true resort of a "coward,"  not writing an unexpected  Supreme Court opinion.

Until next time,


Elise