Thursday, September 30, 2010

We Fight the Fights That Are Worth Fighting

This post has been published at The Thinking Person's Guide to Autism. A wonderful blog which is a compilation of stories, advice and projections from persons who are raising children on the autism spectrum or from persons who have autism themselves or in some cases both situations. It is an interesting and informative look into today's world of where we are in the autism community and where  we have yet to go. Please read the entire post at the link below.

Until next time,

Elise


Fifteen years ago, my oldest son was diagnosed with PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified). At the time, we had no idea what kind of future he would have -- if he would have at a future at all. Autism was not even a word on anyone’s lips at the time; no one was talking about it and no one was even acknowledging the epidemic that it was becoming.


Luckily, I had a cousin whose son had been diagnosed years earlier and I called him for some advice. The best thing that he ever said to me and what I pass on to others is: Do not project the future for your child. Take each day, each moment if necessary, and do what needs to be done at that time. Then one day you will look back and see how far your child has come. That is exactly what I did -- and when I look back, I see miracles......

Read the Rest at The Thinking Person's Guide to Autism

Wednesday, September 29, 2010

Remember Who We Are

Don't forget who you are and what you can accomplish. We fight the fight that is worth fighting.



Until next time,

Elise

Monday, September 27, 2010

My Posts on Advocacy

Listed below are some of my posts on advocacy. Maybe something in one of these articles will help.

Advocacy: Your Present Job Your Child’s Future Job http://is.gd/fvTbt

When You Want to Throttle the Teacher http://is.gd/fvTgQ

Stress Be Not Proud http://is.gd/fvTjY

Of Brain Scan Therapy and the Right to Dream http://is.gd/fvTny

The Importance of Role Models http://is.gd/fvTrp

Don’t Call Them Boys with Aspergers, Call Them Boys http://is.gd/fvTut

Don’t Yell, Just Embrace Your Inner Bitch http://is.gd/fvTyT

Self-esteem, It’s Not a Trophy, It’s Reality http://is.gd/fvTCA

20 Years and Counting: The American with Disabilities Act http://is.gd/fvTGO

Educating Your Autistic Child http://is.gd/fvTNq

When You Have Done All That You Could, Then What? http://is.gd/fvTX8

Autism Awareness, Perspective Taking and Freedom http://is.gd/fvU7G

Working With the School: Yes It can Really Happen http://is.gd/fvUdN

Creating A Village, America and the New Semester http://is.gd/fvUjG

Becoming the Guide in the Land of the Lost, It’s Not What You Think http://is.gd/fvUvi


You May Have Big Dreams, But First You Have to do the Assignment http://is.gd/fvUBO

No Retreat and No Surrender: Getting Your Child to Act Like Britain Under Churchill http://is.gd/fvUOr

“He’s Looking At Me, “Channeling Robert DeNiro and Other Social Issues http://is.gd/fvUVI

Simon Cowell, Culture of Rude and Your Autistic Child http://is.gd/fvV6e

School Days, School Days, Dear Old Golden Rule Days http://is.gd/fvVbZ

Fighting the Good Fight- Pick Your Battles There May be Many http://is.gd/fvVhy

Fighting the Good Fight Part 2: Starfleet We Have Engaged the Borg http://is.gd/fvVkO

Transitions: Work/School/Camp http://is.gd/fvVJk

Watching Over the Teachers http://is.gd/fvVPb


Meanwhile go to http://wrightslaw.com/ for some really good legal help and information.

Until next time,

Elise

Saturday, September 25, 2010

So Far So Good (Hope I Didn't Just Jinx It)

So we have started the new school year and I have not gotten a call from the vice principal or anyone for that matter. Last year I got a call on the first day, about something HSB had done on the first day of school. I knew then that it was going to be a tough year and it really was. I knew about the incident before the school called because in his own ineffectual way HSB told me of the incident. I know he didn’t mean anything by what happened, he was actually remembering a particular child who had picked on him in a class and that child showed up in his new history class. He was not pleased and was quite agitated that he would face the same teasing again. He then went on to obsess about that child and not pay attention in school. I told him that as long as that child left him alone, he needed to deal with the child in the class. That if that child learned his lesson and didn’t tease him anymore than it was over and HSB was to move on.


I guess I shouldn’t just call it teasing, I do think it was a form of bullying and the school did take care of it. This particular child liked to push HSB’s buttons about Obama being President (HSB having been for the other guy and quite vociferously open about his disdain for the President). Interestingly the school didn’t really want to punish the teasers and his friends, even though according to HSB’s para, who actually reported the incidents, that in her opinion it was tantamount to bullying. The school decided I should understand that the teaser, being an African-American child was proud of the first African-American President. No offense, but I am not stupid. I told them, that in no uncertain terms. But when the adult who is there to help my son tells me that what is going on is bullying then that is what I am going to go on and not what is politically correct. My child wasn’t going to be thrown to the wolves because they didn’t want to be accused of not being understanding of the “teaser” child.

Well guess what, they did call those other children in, and their parents, and they of course tried to blame my son, that he was not nice to them either. Knowing HSB what would happen is that whenever one of these children said anything or even made an appearance HSB would roll his eyes and make a negative comment under his breath. But then again what would be your feelings towards those that were purposefully upsetting you. HSB having a really hard time controlling telling it like it is, would most openly show his own disdain for any of these boys. Oh well, tough noogies as they say. Don’t’ want someone to openly show disdain for you, don’t pick on them. (Personally I think the children and their parents were just trying to deflect the blame for the incidents on HSB, and as usual I stood my ground and HSB did not have any of the blame pinned on him.)

The way they resolved the issue was that all of the boys were to ignore each other. They were to stop pushing HSB’s buttons and HSB was to stop moaning everytime one of them opened their mouths. The vice principal explained to me that this really was just 15 year old boy nonsense and that it didn’t really rise to a terrible level. That as long as the other boys left HSB alone, that a talk with the vice-principal and having had the school call home was all they wanted to do. Honestly, as long as it stopped I wasn’t really in a position to demand too much more. I decidedly to let the school handle it this way only because they had always understood with HSB and you don’t need to make too much out of some things. But you can bet I kept tabs on how things were going from that day on.

So when the “teaser” child showed up in that junior year history class, HSB’s anxiety ratcheted itself up and he started to obsess about his nemesis being in class with him. We did have to calm him down and we told him that the para would take care of anything if the “teaser” child started in again. But I also knew "teaser" child really wouldn’t. Junior year is very touchy for kids in highschool and any disciplinary issue is required to be explained on your college applications. None of the children in this school district want any blemishes on their record so the “teaser” spent the year ignoring HSB and HSB spent the year ignoring the “teaser.” Sometimes that is all you can do too.

Children need to learn to deal with incidents on a daily basis that don’t exactly meet the criteria of fairplay as well. Should the “teaser” and his friends have gotten detention? Probably. Should I have decided to advocate more vociferously about the fairness aspect…sometimes you have to pick your battles and let things slide and sometimes you don't stay quiet. I would have to say that my allowing the school to deal with the issue the way they thought best at the time helped with them adhering to my demands on how they deal with HSB last year. As I said HSB had a very bad year last year. His anxiety was off the charts which caused meltdowns and rudeness and numerous inappropriate issues. It is one thing to have these behaviors when you are 8 years old and 50 pounds. It is quite another to have these issues when you are almost 6 feet and 200 pounds. So the school understood HSB and that is what I was going for.

Meanwhile, the beginning of this school year has been exceptional for HSB. He has a terrific schedule with only 3 or 4 classes on most days. He has plenty of downtime and support (well he always had the support) and his case manager is the same one from last year. She is very invested in HSB doing well and I couldn’t be happier. She is also the bowling coach and like last year made sure that HSB had his medical charts in so he could start with the bowling team in November.

I have received numerous emails that HSB is being very social. Working well in groups and doing his homework without too much prompting. There was a bit of a transition issue in math, but the school had him talk to the math teacher and he apologized for his attitude and it has been good since then. Meanwhile HSB told me nothing had happened and that he never had to talk to the math teacher. I let it go. Most 16/17 year olds don’t like to tell their parents everything and as long as the school is informing me about what is going on, I will let HSB have this teen idiosyncrasy.

I think that an important point needs to be made here and that is we did a huge change up of meds for HSB this past summer. I have posted before about being careful with medications and watching your children, but the difference that we have seen in him as far as his interactions in school is nothing short of him being a different person. Many medications if overdosed can cause depression, more not less anxiety and interfere with their thought process. We started with a doctor who specializes in how to medicate the autistic brain (sometimes less is more) and his understanding that the mix of medications is also different for the autistic brain.

What we have seen is the blossoming of HSB. He is engaging, sweet (to others not me of course I am still mom and Satan’s emissary on earth) and interactive. He picks up on unspoken verbal cues from his paras and teachers and even tires to engage collegeman in conversation. Even their relationship has taken a better turn. Interestingly collegeman has requested joint counseling for the two of them with the therapist so they can deal with their issues. Since they see the same therapist, HSB didn’t mind and the therapist thought it was a good idea. Maybe that helped too. But HSB was open to everything and I do think that it has a lot to do with his medication.

I know how much we hate the fact that our children are guinea pigs and that the only way to find out what works or doesn’t is to give it to our children. I think though that the problem here for me was that I let it go on just too long. I should have asked for additional advice the minute HSB started having issues in school, instead of waiting for the meltdown that occurred at the end of his junior year. I know that everyone will say, you can only do your best, but what I didn’t know is just how different things should and could be. We kept chalking a lot of the behaviors up to his age and the autism, instead of where it should have been, on the wrong and too much medication.

I think at least we learned our lesson and the minute there are personality or behavioral changes I am going straight to the psychiatrist and going to review the meds. He even told me that if something is working today doesn’t mean it will work 6 months from now and that we do need to be vigilant. Well I will give him that. I won’t give him telling me that collegeman can’t go to law school because the social paradigm will be too hard for him, that is a Rubicon I will cross with that doctor when and if I have to, (how many lawyers have you met that didn’t have some sort of issue or t’other), even doctors can learn a few things about autism. But for now this psychiatrist knows his meds and has helped one of my sons. We are planning for him to review collegeman’s meds too, maybe that will also help stop collegeman’s seizures and make it easier for his social interactions as well. I don’t’ put anything past medication in today’s world, helping or being the cause of issues. I tell you medication is such a godsend, but you have to be so careful all the time.

Until next time,

Elise

P.S. Collegeman was in the Epilepsy Center at Beth Israel Hospital this weekend having a video EEG because his anti-seizure medication levels were so high but his seizures had returned (his bloods were taken at the beginning of the summer, while the seizures restarted in August). Interestingly they took another blood level in the hospital and the medication which we had kept at the same levels was practically nonexistent. The levels had gone from very high to extremely low in practically a split second.The discrepancy in the blood levels was amazing. It meant that all of a sudden collegeman had started to metabolize the  medicine making it less effective than before. The neurologist said that that was why collegeman was starting to have seizures again, so they are raising his antiseizure medicine levels. It is interesting I think that this happened and I think a good warning as the psychiatrist said that at any time medicine can change and its usefullness can change. Collegeman is almost 20 and really developing that male musculature. His testosterone levels must be raging and his body changing dramatically both externally and especially internally. We always think that puberty stops when they stop growing upwards, but it continues well into their twenties, especially for young men. I think a study should be done about the effect of hormones on medication and autism. That would be a great study. Maybe it would provide a few more answers and a few heads-up to parents as well.

Wednesday, September 22, 2010

Flexibility and Reality

This article is cross-posted at Awe in Autism.

The thing that I found that helps when raising children on the spectrum is your ability to be flexible. Now I know that sounds convoluted, considering that one of the hallmarks of an autism spectrum disorder is the inabity to be flexible, but you must maintain your ability to play switcharoo at any given moment. My ability to roll with the punches and take each moment as it comes has helped our entire family deal with the issues that surround the boys on a daily basis. It is as simple as changing the time you allotted for grocery shopping or running to the dry cleaner that could make or break your child's day.


Now does that mean that they should not learn to be more flexible? Of course, they should. Does it mean that they need to learn how to adjust their schedule or understand that sometimes a teacher, aide or therapist may change? Of course it does, but until that time evolves it is helpful that you be the change you want to see in your children (hat tip to Mahatma Ghandi; hope he appreciates my usurpation of his philosophy.).

Start with a schedule ...

                 We always start out with a schedule and what we want to accomplish on any given day....

Read the rest here at Awe in Autism

Sunday, September 19, 2010

Life May Suck But You are Still a Human Being

Guess what …your life sucks. It sucks. You have no money. Your husband works all the time. You are generally alone with your child. And oh yeah, your child is autistic. Your child rages, has sensory issues, can’t speak and you can’t take them anywhere because you don’t know how they will react or what will set them off. You can’t remember the last time you had a shower that lasted more than 30 seconds, if that long and never mind the idea of a manicure or pedicure. You wear a hairstyle that doesn’t really need care; you just stick your hair up in a pony tail and are off with your day. Make-up, heck if you even forgive yourself some face cream it’s what is on sale at the BJs or Costco and you don’t really know if it does any good. You can’t remember when you even had a cup of coffee in peace and quiet. You can’t remember the last time you bought yourself a new piece of clothing, not a fancy little black dress, but even a new pair of sweatpants. You don’t go on vacation. You don’t go out to lunch. You don’t even send your child to school because they won’t support your child properly so you homeschool. You don’t remember the last time you had a good night sleep….oh and the house needs a new roof but there is a new therapy that may help your child so where is the choice….


Many people will tell you that you are not allowed to be angry about any of this. Many people will tell you that you are not allowed to be depressed about any of this. Many people will tell you that you are not allowed to resent anything in your life. Many people will tell you that you need to make peace with what is our life. To them I say Bullshit. You are angry. You are sad. You are depressed. You are furious at the way your life turned out. Does it mean you don’t love your child? Does it mean you don’t love your husband? Does it mean that you will run away never to be heard from again? No. No. And No.

What it means is that you are human and have a right to be disappointed, upset and angry about everything that has happened in your life. And yes it is not a bad thing to say it has happened to you. Sometimes things really aren’t just about your child. It is not selfish to want the things that make us human. It is not selfish to want to be able to take a shower, drink a cup of coffee in peace, go to the market and not have to deal with a meltdown (and those nasty horrible stares). It is not selfish to want to be able to buy some cosmetics in a department store and maybe a new pair of jeans along the way. It is not selfish to want to spend some time alone with your spouse. It is not selfish to want to have a mani/pedi and a real haircut once in awhile. It is not selfish to want to join a girlfriend for lunch and talk about nonsense. It is not selfish to want to have somethings that are not life and death in your life.

We, as parents of special needs children, focus all of our energies on helping our children progress and survive that in so many ways we forget about ourselves. We forget that we are human and allowed to have wanted a different type of life. I am not talking about the fairytale, nobody really has a fairytale life, but what we ask for is truly just the basic everyday aspects of existence. You are allowed to not be happy with the way things turned out. You are allowed to hate, what has become of your hopes and dreams. You are allowed to despise the doctor visits. You are allowed to be disgusted that your child has to be a test-tube for medications. You are allowed to be repulsed by the lack of support in society for parents like us. You are allowed to be depressed, angry, sad and resentful….Now what do you do?

You get off your ass and do what you have to do. Listen it is human and we need to allow ourselves to be human, to have every emotion and run the gamut from sad, depressed to violently angry (as long as you don’t act on that violence). There is nothing wrong with it and you can forgive yourself your own humanity.



You know I hate it when psychologists tell us that we have to mourn the child that we thought we were going to have. Not because we do have to recognize that things will be different, but they leave off the part about mourning the life we thought WE were going to have. I have found that every step of the way in my boys lives I have been confronted with just how different things could be for them if they did not have autism. Yes, my boys are some of the lucky ones. Yes my boys have potential. Yes my boys just may have the complete life they are entitled to have. But what about how every step of the way our lives would have been different too.

Therapists I think forget that everything is not always about the children. They worry that we, as women especially, will feel some sort of guilt for causing our children’s autism. Believe you me that was never an issue for me. The reality is that no one actually every discusses what you can do for yourself now that your world has been turned upside down. No one ever discusses what you can do for yourself to help yourself deal with the stress that has been placed on your shoulders; other than go to a therapist or take drugs. Truthfully I had had my fill of both very quickly. Therapists have no answer and quite frankly the drugs just made me fat, which didn’t really help my self-esteem or my health any. Neither provided me answers. I had to find that out for myself. No one ever discusses with you that you are entitled to a future just like your children. It’s as if as soon as that autism diagnosis is said out loud you cease to exist as a human being. I am here to tell you, that it’s not ok to cease to be.

I remember when collegeman was finally placed in his out-of-district autism specific program, which was in another regular elementary school. I came to help him at the book fair. While I winded my way through the corridors looking for his class, I passed several regular kindergartens. They were all sitting in a circle and singing a very innocuous song. They were laughing and clapping and being 5 years old. I knew my son could not do that and neither could any of his classmates. You bet I got angry. You bet I started to cry. You bet 15 years later I still feel what it was like in the hallway. I remember I made myself a promise, or rather, remade the promise, that I would help my children have the life they were entitled to, no matter what.

I had originally made that vow in the doctor’s office when they read the report on collegeman’s testing. No one was going to tell me my baby was not going to have a future. What I forgot to promise was that no one was going to tell me that I was not entitled to a future too. Now, as I have said before, I did come into the world of autism, before there was social media, facebook, twitter and on line support groups. You just didn’t find support in the world by answering an add or googling autism. There were no real conferences, books, YouTube videos to tell you whether you were on the right track or not. You were alone in a world, stuck in a house with some very disabled children. But that should have not been the end of my humanity. Luckily my parents aw that and bought me a little television for the kitchen so I could watch adult programming, even the news to remember that there was a bigger world. It was the best thing anyone had ever done for me. It reminded me that everything wasn’t about the boys.

I think it is important to remember our own humanity. I think it is important to remember that you are entitled to a new pair of sweatpants and a new bra every once in awhile. I think it is important to remember that you can buy yourself some new eyeshadow or descent face cream. I think it’s important to remember that you can read a book, go back to school, or even take an acting class if you want. It is important to remember that you need an outlet and that you are entitled to a life of your own as you make sure that your children have a future of their own. I think it is important to remember that you have access to media, information and support in the netherworld of the internet and in many cases we can find our voice in our own anonymity on line. Yes blog, baby blog.

But most of all I think it is important to remember that just because you are angry, sad, depressed, pissed off beyond any sense of reality, does not mean that you don’t love your children. I say it is because you do love your children that you are so angry. And you know what you are entitled to love yourself too. BTW I can’t stand the people that say they love their children’s autism because it is a part of their children. Bullshit. Bullshit. Bullshit. I have never heard such New Age namby pamby crap in my entire life. (So now the neurodiversity crowd will come after me that is fine.) But autism is not who my children are. Autism makes it harder to be who they are. Autism makes it harder to enter a room. Autism makes it harder to digest auditory information and make decisions. Autism creates anxiety. Autism causes their seizures. (Collegeman goes back into the hospital this weekend for another video EEG because his seizures are acting up and no one knows why.) Autism makes it hard for them to make friends even though they desperately want some friends. Autism makes it hard for them to go ask a stranger in a store for information. Autism makes it hard for them to learn how society functions. Autism makes everything hard period. Autism makes them the “other” in a world that is not ready for them. Autism makes them the experiment when all they should be are just boys. Autism keeps me up at night because I do not know how to protect them from the world outside once I am gone.

I say acknowledge that this anger comes from the fact that you do love your children. They did nothing to deserve this. You did nothing to cause this. Harness this anger. Harness this depression. Harness this really pissed off attitude and make it work for you and your children. We fight the good fight for our children, no matter how draining it is. Don’t’ forget to fight the good fight for ourselves; for our marriages; for our very existence as human being. We can also begin by just acknowledging that sometimes life just sucks. OK, enough bitching...Now its time to get to work again...
****************

On another note:...Glee and The Big Bang Theory begin again this week...time to laugh and sing...and get over some of our being pissed off for awhile.



Until next time,

Elise

Saturday, September 18, 2010

The Ignorance Associated with Using the "R" Word

One of the greatest changes that occurs within a society is its reexamination of its use of language. The old adage that "sticks and stones may break my bones but words will never harm me.." is without question ignorant of psychology and systematic bullying. The following was written in response to persons who just are unable to wrap their brains around the concept that words carry power and have meaning beyond Webster's dictionary. While we cannot teach every person, I think it is necessary at times to fight the good fight.

Yes the following piece is a deconstruction of some poliically conservative blogs, but those on the more liberal side should not crow as if your side of the aisle has no nastiness or ignorance either. I could deconstruct on any given day the insults, ignorance, name calling (including the use of the "r" word), lack of facts, mysogyny and open virulent anti-semitism found on The Huffington Post, The Daily Kos, Slate, Salon, The Daily Beast and The Atlantic, to just name a few liberal sites.

So comment on the linked original blog. Comment on the topic at hand, but the point of this post isn't about politics as its is about right, wrong, change and evolution of society. Ultimately it is about respect for each and every individual human being on the planet Earth.

***********************************************************************************

I have just had an online argument with some IQ challenged individual who thinks that using the word "retarded" is acceptable behavior. The word is derisive, condescending and demeaning to an entire group of persons who through no fault of their own are faced with immense issues. It has been used throughout time as a tool by bullies to harass and torture others. An intellegient individual should no more use the "r" word than they use the "n" word.


The disability community prefers the term intellectually challenged. It is also the new way the psychiatric community has decided to describe the disability. Please reread my past blog on the subject of the intolerance and ignorance that surrounds the use of the "r" word. Intolerance is a disease. Words do damage and are hurtful. It does not show weakness to acknowledge that there are some things about society that could use change, even if the left thinks the same thing. Everything isn't about Alinsky, Marx, socialism, the size of government, income redistribution and "double speak." Sometimes some things are just wrong no matter what.

Friday, September 17, 2010

People's Power- The US Constitution

The following is a combination of two previous posts that had appeared in March 2010 at Liberty's Spirit. I re-present them today in honor of US Constitution Day. As I have said before everything isn't about autism. It is important to remember that without the US Constitution no one, our children and others with all kinds of disabilities included, would have the rights that they enjoy.


WE THE PEOPLE.  
It is important that we, Americans, never forget the importance and the significance of these three words. We need to remember that these words are written into our Constitution larger and more pronounced than any other words for a reason. We must never forget that we the people are the United States. We the people created this nation. We the people took destiny into our own hands and told the world, we the people will control our own future. We the people will not be denied.

It’s not as if there is even a question really in today’s day and age that the United States is all about the people. It is quite evident that the people when they are denied will stand up and be counted. There are those that when called to serve stand up and sacrifice for our future. When issues abound there are those that politic and lobby for their beliefs and point so view. There are those who are civically minded volunteers, active in their communities, thus making all our lives joyful, secure and free.

But to understand why something is important, I also think it is necessary to understand just how rare it is and just how vulnerable it can be. ... we must understand that to enjoy the freedom to make all our own choices means we must take ownership for our failings as well as our successes.

But first we must also address the issue of what is the Constitution. No not in a specific, article by article, way. Anyone can buy a copy of the Constitution in a bookstore or order it on line to find out the exact rules under which this government functions. What I would like to discuss is the power of the document. What it has actually accomplished, something that had never ever been accomplished before in history.

What I am talking about is the power of the US Constitution to transform a disparate group of unrelated and unconnected people into the freest nation to have ever existed in the history of humankind. That it took people from across the globe and created what we now call an American. That these same so-called self-styled Americans have even evolved and created a challenging new philosophy of nationhood.

Yes, it took centuries for us to appear, but we had to begin somewhere. As with the development of societal norms, the development of a people, the society in which we live, also thrives on evolution. No I am not just talking about civil rights, suffrage, equal protection or disability rights. I am talking about something much more esoteric, something much more abstract as to who we are. We Americans are the confluence of ideas from around the globe. Not just in food, clothing and language, but in culture and law and relationships. We may have started our nation as an outgrowth of the British Empire, replete with a very British understanding of society, but we made it more than that.

Some do point to the American Revolution as evidence of a break with English tradition, but in truth, it really wasn’t. The American Revolution was fought, because the British government usurped the very English rights of landholding men. The government of George III took from our founding fathers that which they held more dear than their own lives. Lives which they in fact were willing to forfeit in order to retain and that was the very English ideal of individual liberty (of course at the time they were only talking about white, landholding men, but we have thankfully evolved past that) . This concept of liberty is all about the right to direct your present and prepare for a future of your choice. Intrinsic within it is the idea that individuals are entitled to participate in the development of these rights through representative government.

OK, so many say the Congress isn’t representative of the American people today. For that we have no one to blame but ourselves. But we have seen a wellspring of action and the people have demanded to be heard. This has been a raucous election season and it is not over. But this is our Constitution in action. This is the legacy that our forefathers gave us. This is the legacy that our forebearers died for. This is what people around the globe daily die for.This is freedom and it is glorious.


Even the formation of the government in the Constitution is modeled after the English system of parliament. Remember we even had a ruling class, our senators used to be appointed by the governors of the state, not elected by the people. Meanwhile, it was the House of Representatives that was representative of the people. There was also no mention of term limits for a president. It just became de rigueur to serve only two terms to follow in Washington’s footsteps. Not until after FDR, was the Constitution amended to include a two-term limit on a Presidency. Ironically, the founding fathers had even left open the potential for a King, even though they would have all bristled at the thought.

But how did the US Constitution help us to evolve and bring together the confluence of ideas that has made us who we are today? The Constitution holds us all together, by allowing everyone to be who they are, and be Americans. No I am not talking about the hyphenated American, or class warfare. I am talking about the power of the Constitution in our everyday. It is the Constitution that recognizes a human’s need for self- realization. In fact, the power of the Constitution within our society is that you don’t even know it is there unless you need it. The Constitution empowers anyone living within the borders of this nation, citizen or noncitizen, legal alien or illegal alien. All can access its protection. If you are in the purview, and subject to the laws and regulations of the US government (you don’t even have to be in physically within the borders of this country) then you are entitled to the aegis of the US Constitution.

Every American knows that he has rights under the Constitution. Of course, he may not be able to name every right in those first ten amendments, but Americans know the government is hard pressed to really interfere in their lives. Americans understand that the Bill of Rights is not about granting us powers over our day to day existence, but it is about the curtailment of the powers of the federal government to interfere in our day to day existence. It is us, We the People, who give the government limited powers, and We the People who can take or give power as we see fit. Americans understand that no one, not even the President is above the law. (Presidents can be impeached, they can be forced to resign, and they can be chastised by the Supreme Court, or overridden by Congress). No one and nothing is more important than the people. That is the power of the Constitution and that is why our society grows and changes and evolves almost on a daily basis. Sometimes we evolve in even violent ways (civil war, social unrest, even some types of demonstrations), and sometimes we evolve in nonviolent ways (sit ins, marches, speechifying, townhalls, laws and amendments, lobbying and politics) but our nation evolves.

We change because the Constitution allows us to challenge each other. We challenge each other‘s ideal and thoughts and beliefs. We challenge each other’s ideas and truths. We challenge each other’s concept of government and what role the government will play in our lives. But mostly we challenge each other’s idea as to what kind of America we want our children to inherit. We challenge each other’s idea of legacy. We challenge each other’s idea for the future. We challenge each other’s notion of what is good for posterity. We even challenge each other’s idea of what makes us proud of this country.

So that is how the Constitution creates a people. It takes a disparate band of human beings, who are up for a challenge and it allows them to be challenged. Many around the world do not understand Americans. Many do not understand the individuality and independence that is intrinsic in the American spirit. Many around the world do not understand that our differences are our greatest strength. Many around the world do not understand that our arguments and our fighting and our not always pleasant discourse are the things that make us a people. For as a person grows through trials and tribulations to become much more than they ever thought they could, so does a nation. So does this nation.

So next time when you read the Constitution look for the invitation that reads, come help create a people. Do you see the dare it lays out before you? It is written boldly and plainly so all might see. It invites those who are not afraid. Come help me build a nation it calls. Come stand with me and we shall know what it is to be free.

Until next time,

Elise
Happy Constitution Day

On This Yom Kippur

 Yom Kippur pray for all of my dear readers, friends and family:

                                                       Gmar Chatimah Tovah
May you be inscribed in the Book of Life for a good year.
                                              


Until next time,

Elise

Tuesday, September 14, 2010

Relate To Autism, A Web Based Support Platform

Relate to Autism-finally an on-line program that supports your child and you at the same time.This morning on @TheCoffeeKlatch we had a special blogstalk session  (HERE) with Kat Houghton the creator and founder of the wesite Relate to Autism. It is a unique platform that enables parents, therapists and doctors a way to track and create a unique personalized program for each child. It allows you to categorize and quantify their progress inorder to decide what and when certain aspects of their program helps your child or needs to be changed. Bascially you learn how to be the coordinator of your child's program. It empowers parents in deciding the direction their child's therapy, medications, biomedical program and education supports should actually take. You basically have at your fingertips both practical therapy and medically based information with quantifiable results. Furthermore, the information garnered can be a very useful tool when developing your child's all important Individualized Education Plan.

Meanwhile here is how Relate to Autism works in Kat's own words:







Here's Kat herself:







Don't forget to go to @TheCoffeeKlatch's blogtalk radio station HERE to listen to the entire show.

I would once again like to thank Kat Houghton for sharing her website and knowledge with us. Please check out her program, remember 30 day trials are free, so you have nothing at all to loose and everything to gain



Until next time,

Elise

Saturday, September 11, 2010

September Happiness Project-Family

This post is being written as I watch the reading of the names of the fallen on 9/11. I leave the television on all day while the names are read. Why? Because we all must remember that that day was not an abstraction but that actual living breathing human beings perished because of hate that day. You may ask not knowing any of those that perished on that day, what does their passing mean to me? It means something because we are all part of the human family. When something happens to a part of our family we are required to help. It is why when hurricanes or floods happen half-way around the globe it is our instinct to reach out as best we can and offer what support we can. It is in our blood. It is how we are raised. So I sit and remember those of my American family that perished on 9/11. It stays on from the first name read until the last. Even if we are not in the room to watch, the names reverberate through the house. It is the least that we, who are alive, can do.

I know that this is a rather odd segway into our discussion of September’s Happiness Project, but seeing that September’s word is family, I began to think just what is family and how far does it extend? Family I suppose comes in many forms in today’s world. We recognize that people are allowed to love each other beyond the traditional view of family and that people become family because they share a unique bond and a unique caring for one another. Family is no longer simply the people you grew up with, or the distant cousin you see every ten years at a family reunion. Family is the therapist who comes in snow and sleet to help your child learn to speak, or the teacher who brainstorms with you on how to get your child to read. Perhaps family is the wrong word; perhaps “village” is a better word to describe those in our lives who care. But with either word, they connote the people you can turn to when there is trouble and people you can turn to when you have some joy.

Being parents of special needs children we are always faced with the issue of family. Invariably I hear from those whose blood family doesn’t understand the issues that their children face. Or those blood relatives have no idea nor care to have an idea about what autism or any disability that their children face happens to involve. It is perhaps the cruelest cut of all. At times even worse than that day you received the name of the disability that was causing your children so much difficulty. You see, we do know, in the back of our hearts and minds that there is something not the way it is supposed to be with our children. By the time they are diagnosed we are sometimes relieved, well at least I was, that we have a name for everything that is happening and it gives us something to work with.

But the thing that you did not expect, the thing that cuts you to the quick is when family who you helped with their issues, your family that you grew up with, shared a room and late night secrets just doesn’t care and doesn’t want to care. That those blood relatives that you have helped overcome some of the most troubling times in their lives turn on you and has no use for you anymore because it means that your child and not they, are now going to be the center of attention. It is disheartening to find out that those who you were told your entire life, that these were the people you can count on, are the exact persons that you cannot count on. So what does this mean for us? What do we do? What this means for us is that we go out and create a new family, one that cares about what is happening in our worlds. We redefine family. We redefine who is important in our lives. And finally we end up in many ways redefining ourselves.

But first we need to allow ourselves to get over the hurt of the abandonment by those who were supposed to be there for us. We need to allow ourselves to mourn the passing of what we thought was family. It is interesting that we face this exact issue when we are also told that it is ok to mourn the loss of the child we thought we were going to have. This according to psychologists is a normal event. We need to mourn what we thought our lives were going to be and what we thought was going to be our children’s path.

I have seen parents become despondent over the fact that their children have a slight speech delay thinking that their children’s future was over. I know to those of us whose children truly have a myriad of real issues, whether development or life threatening medical conditions, this seems insane. But as I explained to the specialists who were angry at this one particular mother, unless you live in the special needs world you have no idea what people face. To this one particular woman her child could not keep up with her peers and her thoughts raced as to what would be for her child. You cannot always blame people for their reactions to things, you just sometimes try to understand why they react the way they do.

I actually tried that with those blood relatives who abandoned us. I tried to understand for a very long time why they thought or felt the way they did. If it was just a fear of not understanding and a fear of not being able to deal with the autism I think I could have forgiven that. But it was the true not caring and the true not wanting to understand, not a fear of understanding that drove me from my blood relatives. It wasn’t even the relative who had ideas for you, albeit so very wrong, including it being just bad parenting. In an odd way they at least seem to care, even condescendingly, what is happening, even though they have no idea what they are talking about. Of course, this doesn’t include the relative who keeps telling you to spank your child and that will fix your child. Ignorance and stupidity really are no excuse, but at least you can understand it. Just not giving a damn well, that is a totally different rejection.

The truth is your child and you deserve respect. No one has a right to be mean to your children no matter who they are. When anyone is mean to a child, never mind one they know is disabled or ill, then they are not only not family, they are removed from the definition of human being in my book completely. They cease to be a part of your life, and are not worth any effort on your part. I think the hardest part when this happens is that you also need to deal with the fact that there are those out there who are not you and you cannot expect them to be. There were so many people that I had been overjoyed when things were good and helpful when things were bad, but when it was my turn, their backs was what I saw. The trick of course, is to make sure that in your disappointment, your sense of self does not change. It is important that you do not change who you are just because those who were supposed to be there for you, were not what you expected. Disappointment in the human condition can be hard at times, but it does not mean you have to change who you are.

So we mourn who our children are not going to be at the same time that we mourn the loss of those that were supposed to be our family. We deal with a lot at the very beginning of our journey with our children. We just never thought that while we were trying to build a world in which our children could exist, we would also have to rebuild our definition of family.

But rebuild it we can and we do. We learn that family is the person who sits with your child and holds them while they meltdown in school. We learn that family is the person who runs to the market for you because you are too overwhelmed to go out for that quart of milk. We learn that family is the person who sits with you over a cup of coffee and listens to you bitch and complain how alone you feel even with them sitting there. We learn that family is the parents of other special needs kids who accept you and your child without reservation.

We learn that family is some stranger on twitter or facebook that you have never met face-to-face, but understands you without ever having met you. Together we offer advice and give hugs (albeit virtual) when things gets tough. Together we exchange information, ideas, and hopes for the future. Together we understand what it means to not be able to go on a “date” with your spouse or that “date” means the respite care giver came over and you and hubby sit in the basement for an hour of peace or in fact, just fall asleep together because you have found that rare moment of quiet. Together we understand without condemnation what it means to be severely in debt because of therapies. Together we understand what it means to be overjoyed that your child reaches and surpasses a milestone that an NT child reached years before. Together we understand what it means that there may not be a solution to a problem and that we just need to deal with life as it is at present, but that we can hold out hope beyond hope for a better future to come. But most of all, together we do not condemn, together we do not judge, together we are just there, as best we can be, if one of us needs each other.

Family has many meanings in today’s world. There are many configurations of family and how these families look. I say embrace your new families. We all have a right to belong among those that understand us.

Until next time,

Glad for those that are part of my new found family,

Elise

OK one more 9/11 must see video:

Friday, September 10, 2010

Never Forget 9/11

Not everything in this world is about autism. Never forget when our world came under attack because we  Americans believe in freedom, justice and the equality of all mankind. There were several hours on that beautiful fall day that I did to know if hubby, brilliant-computer-sis and quite a number of other relatives were still alive. If the purpose of terrorism is to be terrified, well I refuse to be intimidated. I stand for the Bill of Rights, the US Constitution and the American way of life. I will NEVER APOLOGIZE for it and will NEVER give in. No one will ever tell me how to believe, how to live and how to express myself. We Americans are made of sterner stuff. If this offends you, you need not return here.








Firemen at the World Trade Center 9/11



Hanging the American flag right after the 9/11 attacks-the Pentagon



Don't forget that freedom is not free. If you have not done so, please find a way to support our young men and women fighting to retain our freedoms. I have listed some organizations in the previous blog that give aide and comfort to our soldiers. Please give.




Wednesday, September 8, 2010

Sounds of a Call to Action

World-wide Jews will begin the celebration of the Days of Awe with the traditional call of the shofar. Many theories abound as to the meaning of the shofar blasts. The most common one is that it is the call to repentance. For the shofar is sounded on Rosh Hashana to begin the ten day period of reflection and it is sounded once again on Yom Kippur to signify the conclusion of this solemn period.





Then
Kandahar Province, Afghanistan today
In fact during Biblical days, the shofar was sounded by the warriors of Israel going into battle, much like the bugle used to be sounded for the US Cavalry .








I suppose for me, the call of the shofar signals my continued battle for the rights and for the future of my children and children like them. It is good no matter what your situation to never be complacent, but be prepared, be ready for what may come. Above all know that our cause, of acceptance, respect, inclusion and importance for our children, is a just and righteous cause. For our war is to repair the world (tikkun olam) for our children. Our repairs may not necessarily reach the world beyond their little comfort zone at present, but repair it for them we shall and then move on to the next battle front. So heed the call of the shofar (or the bugle): repentance, reflection or battle front take your pick, or choose all of the above. Personally, I generally choose all three.



As we repair our children's world, it is important to remember those that fight and die, so that we may live free and fight the fight we need to for our children. Please support our young men and women at arms. Here is a very small list of some organizations that you can be a part of:

USO
Any Marine
Soldier's Angels
Taps

Please add in the comment section the names and urls of more support organizations for our service personnel. Thanks.




Until next time,

Elise

Tuesday, September 7, 2010

From Hell to Help (Redux)

Today was the beginning of a new school year and I have taken this opportunity to reprint a post from February 2010 about some of the trials and tribulations we had been through when collegeman was first diagnosed with autism. The point of the post was to tell the story of the wonderful special education director who finally helped collegeman. Professionals need to understand the lives they hold in the balance and the damage they can cause or the miracles to which they can become a part. (This post details both kinds of individuals.) Lucky for collegeman and HSB that this one particular man totally understood what it meant to hold out a compassionate hand.

This is also the beginning of the Jewish Days of Awe, which commence with Rosh Hashana and end with Yom Kippur. It is a time to relfect and review about who we are and the world in which we live. The Talmud tells us that to save a single life is to save an entire world, I cannot think of a better example of the power of good in a world of pain than what is discussed below. I also think that it is apropos to remember the sage advice from one of the greatest sages of all time Hillel: If I am not for myself, who will be for me; but if I am only for myself, what am I.


Almost on a daily basis we read in the paper or hear on the television about a child with autism who has been abused or even killed when restraints have been applied. Then in the alternative you read or hear about an autistic child who fights back from being restrained (would you allow someone to sit on you or hold you down or put you in a straight jacket willingly, so why should any autistic child?) and has been arrested by the local police. Recently, a six-year-old had been arrested and charged with a felony for biting his teacher during a meltdown and another 6 year old was taken away in handcuffs in a town in Florida for having a meltdown. What the news fails to tell everyone is how these meltdowns by these children can be and/or are precipitated by the classroom teachers either unwittingly or on purpose. Now how do I know this because it happened to collegeman.

When collegeman was in kindergarten in New York City, his classroom teacher did not want to have to deal with the issues he presented. At this time it had become very apparent that he had a major disability. He could not follow her class nor participate as she decided he should. In fact I distinctly remember her yelling at me because she had to hold his hand during a fire drill. (Interestingly when highschoolboy was in kindergarten town camp his counselor, whom to this day I could swear was nasty kindergartner teacher’s daughter, yelled at me about holding highschoolboy’s hand during a fire drill. In fact the bitch in training yelled at me that she had to help him with his art and that he would cry when I left. Needless to say I removed him from camp and complained to the town. Today I would walk in as a holy terror, but over a decade ago I was a very different person)

Finish the post here. It ends well after a fashion.


Until next time,

May all be inscribed in the Book of Life/Sefer Chaim for a good year. May blessings and God's countenance be upon all (Jew and Gentile) of our children.

Elise

Monday, September 6, 2010

Popularity, Girlfriends and Senior Year

Today is the last day of summer vacation for highschoolboy (HSB). He has had a very quiet few months. He spent the summer with a little volunteering, a little work on the college application essay, a lot of down time and a lot of regrouping. He seems happier and more content than he did at the end of school last year. That is definitely a good thing.


We asked him whether he was excited to be going into his senior year of school. We know that for him change and transitions are really hard. We expected him to tell us that he was afraid of the year to come. We expected him to tell us that he wasn’t so sure about college. We expected him to tell us that he didn’t want to do anymore work and that he didn’t really care what physics was about. We expected him to tell us that he would rather be playing video games. But what we got was something none of us expected.

HSB isn’t looking forward to his senior year in school, because he is not a popular kid. In his words a school “celebrity.” Go figure? We definitely didn’t think that would have been a reason. Without a doubt, when he said that my immediate response was to feel so very bad for him. Hubby tried to make himself feel better by recognizing that at least the kids aren’t mean to him. This for the most part is very true, the kids don’t’ harass him or pick on him at all. I am not sure though just how much they do talk to him. Of course, we also did come up with a plan to help the situation.

First, I want to say that he had never spoken that he wanted to be popular. We knew that he wanted a girlfriend; he definitely likes girls and their company. But felt that his friendship skills were poor and needed to be worked on before he got to the all important girlfriend stage. So we never had the therapist talk to him about how to find a girlfriend. We had everyone work on the skills necessary to just be someone’s friend. We tried to emphasize to him that in order to be a boyfriend you need to know how to be a friend first. He never seemed to mind that idea. But the truth be told maybe while listening he just thought that “girlfriend” was something out of his reach for the moment.

I suppose in many respects it was my mothering instinct that led to the conclusion that I wanted. Not because I don’t want him to have a female companion, I am hoping that that happens, believe you me, but that I didn’t think the girls at school saw him as boyfriend material. He is still seen as the sweet little boy with problems that they have all known since kindergarten. I really didn’t want him hurt emotionally. Yes I know that it comes with the territory of “love” that there will be pain and growth in how to handle relationships. Yet, I was reticent because he has been so vulnerable and fragile in general recently. I didn’t want him to be rejected by a “girlfriend” right after he was rejected by his best friend since third grade. Over protective you say, most probably…

Honestly, at the moment no one, not a therapist, a tutor, a teacher, a social skills counselor actually thinks of the word “girlfriend” in relation to HSB. Everyone thinks of it in relation to collegeman however. It was really telling that when I took HSB to the Sylvan Learning Center near us, which the boys had gone to for years, the math tutor actually told me, not even having seen collegeman for years now, that the one thing he needed was a girlfriend. Truthfully, I agreed with her. But collegeman is so focused on his work that he can’t seem to conjoin two ideas at once. That is something we are working on with collegeman, the social piece at school. The college coaches we hired are making sure that he interacts during his down time and that he doesn’t just spend all his time in the library. Yes, for him we need to figure out a little more of a plan and figure out a way to make social discourse and interaction something that he wants to do. Not for employment purposes but for human purposes.

But back to HSB and his desire to be popular. I did meet with the special education team before school started and the first thing that I mentioned was this new found openness about wanting to be popular. They were as surprised as we were. But as we were it was also mixed with a sense that this was a good thing. HSB wanting to have friends, make friends and be part of a bigger crowd of people, is a step in the right direction. However, they also know that they would be charged with helping him learn how to accomplish this goal. They didn’t really seem to mind at all. They were thrilled at HSB’s growth emotionally, very pleased as a matter of fact.

Of course, we will have to get together to make sure that everything is going well and that they are actually making sure that the paras are helping him learn the social ropes. He will have large blocks of free time this year because he is a senior and I told them that I don’t want him spending hours playing in the computer lab. They need to find a way to get him into the lounge area, and to help him eat lunch in the cafeteria. Unfortunately, eating in the cafeteria may be a challenge in and of itself, because the noise in the cafeteria can be deafening. I also told them that I resubmitted the paperwork for him to be a part of the bowling team too. Joining a more interactive club may be a good idea too. Last year he joined the film club where they just sat and watched DVDs. Not really very social. Maybe back to a charity club where they have to think, talk and decide how to help others is on the agenda.

Another thing that I did was have his therapist help him try to figure out how he could interact with more people. They did come up with the idea that he would sit in the middle of the classroom rather than the outskirts of the seating area so he would have more opportunity to talk to people if the occasion arose. However, when I asked HSB about that idea, he did say that the seats are assigned and I am not sure that they are not going to sit him where he used to be for all these years. He tends to be seated near the door, which means there are fewer people to talk to. This seating arrangement affords him an easy out from the classroom if he gets overwhelmed without disturbing everyone else. However, we will see what happens. I have been trying to get a hold of his case manager to tell her, but being a holiday weekend she is definitely engaged elsewhere. (As she has a right to be.)

There is a senior BBQ today, but he doesn’t want to go. I know it is because he has no one to hang out with and that he doesn’t want to be seen with a “babysitter.” Hubby thought maybe he could go and stay in the background but HSB really wanted no part of that. The school did offer a para for the event, but I think HSB just wants to stay home. We told him he could go paint the cafeteria windows with all the senior names just like all the other seniors will be doing, it is a ritual they have here, but no, he didn’t want to go. Interestingly he doesn’t want to be there for the opening bell either. His class starts with bell two. He doesn’t want to go to the opening day assembly and have the official senior greeting for the year. That’s where the senior girls stand outside the school with signs that ask you to” honk your horn for the seniors.” Nope not interested he said.

I do think he is reticent about starting his senior year for more reasons than a lack of popularity. The transitions, the challenges and the schoolwork he doesn’t want to do is definitely on his mind. Putting off the inevitable is something he does really well too. He hasn’t organized his binders, folders or draws for school either. Keeps telling us that he will do it the next day. Finally HSB has realized there is no next day and that he did ask hubby to help him today. So maybe he is working himself up to the idea that whether he likes it or not, life is coming down the parkway.

On that note too HSB has decided that driving may not be a bad thing. He did receive his learner’s permit two weeks ago and has been going with hubby to go-karting. He got to drive the “permitted” go-kart track last time and he had a really good time. Seeing that he could actually control the go-kart has made him interested to see what would happen if he was behind the wheel of a car. He condescended to turn hubby’s car on in the driveway yesterday. He is also going to go with Hubby to an empty parking lot and try to drive the car for the first time today.

Finally in getting prepared for the beginning of the school year, HSB also wants to go back to Hubby-HSB official McDonald’s weekly school year breakfast starting tomorrow too. So we will see what we will see. Transitions, challenges, and a desire to be a teenager just like everyone else are coming our way. It’s going to be an interesting year to say the least.

Hold on to your hats….blast off.

Until next time,

Elise

Thursday, September 2, 2010

Birthrite Trip for Those with Aspergers

TAGLIT BIRTHRITE TRIP TO ISRAEL FOR THOSE WITH ASPERGERS http://www.israelwithisraelis.com// registration begins 9/14/10 PLZ RT


This is a wonderful experience for young people between the ages of 18 and 26. If your child has been diagnosed with aspergers please check out the link.

I have friends children plus nieces and nephews who have done this trip. It is a wonderful experience and our children now have the support necessary in order to participate.

Until next time,

Elise