Monday, April 30, 2012

Jumping In with Two Feet While Doing a Cannonball

In a recent exchange on my facebook page an FB friend mentioned to me that I had two toes in aspiecamp. Another of my other FB friends said of course I did referring to the two boys. Actually, I think that the original intent of the comment was that I had aspergers like my boys. I have to tell everyone no, I do not.

Not that it would make a difference to me if I did. My boys are proud of who they are as aspergeans and I would be proud if I had aspergers too. However,  you can rest assured with all the therapy and all the doctors we have all seen over the years, when I posed that question "do I had aspergers" there would have been at least one "yes" in there somewhere. But no, nada. Nothing. Yet there was an acknowledgement by some of those obsessive qualities I embody. A tendency to perseverate. Not forget a darn thing. Remember odd pieces of information and oh yes...not give a whit what the world thinks when it comes to the boys. Of course, some would call that last idiosyncrasy of mine, parenting.

So why is this distinction important? To me it really is not. Some may think that it takes an aspergean mind to understand your aspergean child. I would have to disagree with that simply because my world is distinctly an aspergean world. OK now what does that mean? It means we do live in aspiecamp. In fact I would have to say that I am director, proprietor, and CEO of aspiecamp. I do for the boys what needs to be done and have always managed the house the way they felt most comfortable. In other worlds, I have jumped into the world of autism with two-feet while doing a cannonball and quite frankly I have never looked back....

When CM1 was little (5 years old) and newly diagnosed we moved into a townhouse with a large joint diningroom/livingroom area. The upstairs held the bedrooms and "playrooms." CM1 was obsessed with all of his belongings being in rows and organized just in the way he liked them. There was no deviation in his world at all.

Now I did not make the livingroom an adult oasis of quiet. I turned it into an area of childhood friendliness or aspie-childhood-friendliness. If you looked at a picture from that time period you would see a couch and a TV in the livingroom area. There would be a game console hooked up and a collection of children's videos. We had one computer at the time and that was also in the area. (This is when my parents bought me a little TV for the kitchen so I could watch the news and pay attention to the outside world.)

The special item in the room was a card table behind the couch with all of CM1's special belongings laid out as he saw fit. No one touched these items. No one came near them except for him. It was his island of calm in his world of turmoil and I was determined to let him have his way. Why was this table in the livingroom? Because this cardtable was where CM1 spent his extra time and I was not going to have him shut away from everyone else while he obsessed over his toys. I also was not going to take his possessions away from him in order to force him to be with us either. He may not have interacted with us at the time, but he was going to sit in the middle of us while he played.

The TV was also for the boys' use not mine. They watched their videos. they watched their cartoons..and yes cartoon network was a favorite. They played their games. I would engage with my sons and their games and videos. I would make sure that I became a part of their world. I knew that I needed to be in CM1's mind before I could figure out how to help bring him back and engage with the world.

Luckily this strategy worked for us. Luckily, too, that it became a way of life for us, as CM2 was as yet undiagnosed with aspergers as well. Interestingly CM2 never became as disabled as his older brother (Our odyssey began at the point when the doctors had no idea whether CM1 would improve and  become a full fledged aspergean or would completely regress.) I reasoned that since the house was an aspergean oasis CM2 benefited from the beginning even though he too would not be diagnosed for years to come. However, he did receive Early Intervention therapy and support that his older brother never had had.  Everyone from speech therapists to pediatricians didn't know what they were looking at with CM1 and those that had an idea were simply cruel. (That I never understood how anyone, especially those dedicated to educating children, could be evil to a small child, never mind one that they thought was disabled. That of course is another post for another day and a topic I have written about many times before.)

In our home, life was scheduled and organized. Life was made comfortable for what the boys needed. If they didn't like a particular food it wasn't eaten. (This was when I asked the pediatrician if I could give them Carnation Instant Breakfast as a supplement. remember this is way before pediasure or similar products.) If they didn't like particular clothing, as long as they didn't want to dress for summer in a snowstorm, it wasn't worn. If they didn't feel comfortable with a particular toy or game or activity it wasn't done. The house was a cocoon for them in a way, but that is what a house is supposed to be. An island of calm in a sea of confusion.

I remember that we even had a visit from a social worker attached to CM1's first autism-program. She came, looked at how everything in the house was organized, and had nothing to add. She seemed amazed at how we had configured the house and that everything was directed in a way that was best for the boys.  It was instinct to be sure for us. No one had told us what to do or not do. We just did what the boys needed and what made them happy. (By the way if your child's autism-program does have a social worker or therapist who will come to your house, let them. Their job is to find ways to help you and your child. I know there are scary stories out there about the intrusion of government, but in reality most of these people who work for school programs truly only want to help, not hurt families.)

Listen how we configured our lives is very different than when people let their children run their homes. It is one thing to create a situation where your children feel comfortable in their own living space and another to let them run rampant over your parenting. There is a huge difference between listening and directing your child and creating an atmosphere where they can breathe. There were rules and regulations and rights and wrongs and they were always followed by the boys. There were time outs and expectations even when CM1 was at his most impaired. Too many people confuse the two points....a child-friendly home does not mean an undisciplined home. A child-friendly home is one where the children can learn about expectations in comfort.

Eventually what you may find later on in family pictures, is that the card table disappeared and that the livingroom added a few more adult items, like chairs and even a coffee table. Over time with therapy, education support and medication CM2 became more secure in his world and moved passed the need to organize everything. In fact we have come to another era of aspiecamp and that is what I call the slob stage. We entered this stage with the onset of adolescence and have yet to leave it...and yes at times it drives me crazy, but I try to keep that somewhat to myself...

OK I am not really very successful with keeping things to myself, but I do try. Well mostly anyway...Except that I did overhear CM1 tell hubby that he is never getting married. He said that when women hit middle age  they go crazy and he is not going to deal with that again....So maybe I am not so successful hiding "annoyance" on my part....

Now the boys don't see themselves as being slobs. They in fact know where everything they need happens to be. But as with most with neurological issues, they lack what is called executive functioning skills. Truth be told if I didn't step in every once in awhile and make them clean up or organize just a little, some things would get lost or misplaced or mold would grow out of the corners of their rooms. (Of course at that point we could manufacture our own penicillin but I am not quite sure the FDA would approve.)

We have had to teach them to file their school work properly and create folders, draws, how to use their backpacks effectively, simply to ensure that their schoolwork does get handed in on time. But when it comes to their rooms, as with the cardtable from decades ago, it is about their comfort level and their comfort level alone. Nick-nacks abound in CM2's room. Research papers are everywhere in CM1's room. They take comfort from their belongings. And the total chaos of their existence. It is times like these that I remember the little boy obsessed with a cardtable, his toys and order. (And yes I do allow myself a little cry.)

Recently however, hubby and CM2 had to go through all his "chachkas," clean them, and put some away. There was no more room for what he needed on his desk. While it is important for CM2 to have a tactile remembrance of his belongings he needs to be taught what needs to go where and when to box items up and put them in storage. Yes we have a label maker and it is put to good use.

Of course when the semester ends we do need to go through all the papers, books, and their work in order to filter out what is no longer needed simply to make room for the next semester's items. I cannot say that this is easy for them but it is necessary. In fact it is no more easy for them then when we have to go through their clothes that they outgrow and replace them as well. Well at least the boys reconcile themselves when we do go through their clothes because what they don't use anymore all goes to the local community center. (God help me if I throw anything away. If the item has holes in it, it goes in the garbage behind their backs. I know that's not necessarily a good thing not to help them understand that sometimes things need to be thrown away but I do try to pick our battles effectively.)

As always, aspiecamp is in full gear. Once we jumped in with both feet while doing a cannonball we never got out. Sort of became stuck in our ways. But that is really how it is supposed to be. Aspiecamp is organized, reasoned and comfortable for the boys. Of course it still looks like a tornado came through my house on any given day, well at least the parts where the boys live (and yes at times I need to breathe deeply)...But in the meantime, the boys are happy, content and continue to grow, develop and be the best that they can be..tell me what more could you ask for?


Until next time,



Elise



Tuesday, April 24, 2012

Raising Your Child-Only Your Opinion Counts

An interesting event has occurred within the "autism" community and quite frankly I find it highly disturbing. There are some in this community that think it is their business to tell others how to raise their children. They make it their business to alienate those that disagree with them. They make themselves out to be the arbiters of what is and is not right when dealing with autism and persons on the autism spectrum. I say baloney to that...

-They think it is their business to tell you NOT to vaccinate your children. They think it is their business to tell you TO vaccinate your children. (Please get the facts, the real scientific facts, on this topic.)
-They think it is their business to tell you you HAVE to go biomed. They think it is their business to tell you TO only use conventional therapy. (By the way I will tell you that anything that is dangerous or life-threatening is irresponsible parenting. That judgement I will make and will always hold to.)
-They think it is their business to tell you, you HAVE to try every freaking new idea out there to "cure" your child. They think its their business to tell you TO stop looking for medical help for your child.
-They think because they HAVE autism they have all the answers and its their way or no way.
-They think because they are professionals they HAVE all the answers and its their way or no way. (Don't pay any attention to the study of the week either. Every week it is another reason that autism is prevalent in the society- from electrical wires, to obese mothers, to older fathers, to taking one extra swig on a coke. It's all bullcrap. No one knows why and I don't care what some expert says. Experts quite frankly are what stopped those like our children from getting the proper help they needed for generations. YOU become the expert on your child. That is all the expert your child needs.)
-They think because they have been at it for decades (like me) they HAVE all the answers and its their way or no way. (This doesn't include me. I don't judge anyone, unless of course I am judged first. It's that Inner Bitch thing I talk about all the time...)
-They think because they have been at it for a few years they HAVE all the answers because they are young, modern and plugged in.
-They think they can even tell you how you CAN and CANNOT refer to someone on the autism spectrum or what is and is not the "politically correct" term for persons with this disability; autistic, aspergean, person with autism, autistic person....personally my choice has always been simply person, human being, and in my children's case boys and now youngmen. When I describe my children, apart from this blog, I never describe them by their disability/difference/issues/problems. I describe them by their humanity first and foremost and only. HERE

Anyway here is some additional advice I want to give to every parent entering the autism world today....

Think for yourself. Do NOT under any circumstances allow yourself to be bullied into doing something that goes against everything that you believe in, simply because someone tells you it is the "politically correct" thing to do, or the latest greatest fad, or everyone is doing it, or some bigshot somewhere said to do XYZ, when dealing with an autism diagnosis and your child.

The key to knowing what to do to help your child is education and not necessarily on social media. Check out the helpful websites page on this blog to begin your educational journey. This is where I started. There was no social media when I began, so I began simply by reading book, after book, after book. Yes start with books by Temple Grandin, Tony Attwood, Carol Gray, The OASIS Guide to Autism, Ross Greene and Thinking Person's Guide to Autism Note: if you do find a book you really like make sure it has alot of links for information and footnotes to reputable people. This way you can explore at your own convenience and seek out what makes sense to you. Anytime someone writes a book without links, appendixes or explanations, unless it is a personal memoir, throw it in the garbage.

Honestly while social media is really good for finding support groups or maybe even seeing sometimes into the future of educating an autistic child it is not the end all and be all of reality. I say this as someone who is consistently on twitter, facebook and regularly adding to my blog. Seek out information from people but do NOT use their experiences as a way to find your child's future or a way to plan your child's life or life for that matter. Also don't let someone else's issues become yours.

Too often parents in this world try to push their ideals on others simply to prove to themselves that what they are doing is the right way as opposed to another pathway. Too often they demand total agreement in their choices or they will not include you in their clique. You wouldn't regard these people as friends in real life and they are not someone you should regard as friends in social media. Even if they have a huge following on twitter/facebook. (PS that includes me. If you don't like what I say, you do NOT have to follow my lead. I will not be insulted. BTW I don't have that big a following.)

Parenting a child with autism in reality is not that much different than parenting a neurotypical child. Now don't get me wrong the challenges in parenting an autistic child are huge as compared to parenting an NT child, but parenting is parenting. If you would not worry what your neighbor thinks about how you parent your NT child why worry what someone thinks about how you parent your autistic child? Do what needs to be done and what is best for your child and your family.

The difference is that we are brought up to believe that we can parent an NT child by the seat of our pants simply because we are NT. It is something that comes naturally to us because we understand our children. I have news for you, as a parent you understand your autistic children too. It may be harder to get what makes them tick simply because they can't always tell you. It may be harder to figure out how they are feeling or what is going on inside, but that doesn't mean that parenting is any different. It just means you have some challenges to meet that you didn't expect when you were pregnant. No this isn't the situation you bargained for when you decided to become a parent. There are alot of situations that people don't bargain for (childhood cancer comes to mind) but they don't worry what others think when helping their child and neither should you. (No I am not comparing cancer to autism so don't leave comments to that effect.)

By the way, if you know an autistic adult, it is not a bad idea to ask them  about what things feel like or how they react to certain situations. I have found this immensely helpful in understanding my children. (John Elder Robinson or Temple Grandin's books helped too) But what worked for any individual autistic to enable them to feel comfortable in situations or experience the world in one way or the other, does not mean that it is meant for your child. However, it can give you a good place to start. An example: it never dawned on me that having auditory processing issues not only meant that a person was slow on the uptake from when they are told something to when they comprehend it, but it also means that at times certain noises cause an immense about of pain. I can't tell you how helpful that was in figuring out how to support my child. But at the same extent it is not up to an autistic adult, even a member of the self-advocacy movement, to tell you how to raise your child simply because your child has autism.

Every life decision for your child is up to you from education to medicine to therapy to religion and to preparing them for their future. Do what feels right for your child. But make sure it is the best thing and the decision is about them and not YOUR fears of what they will encounter in the real world. The real world is something we need to prepare our children for. It is what it is and we need to make certain that our children are able to navigate through that world successfully or with the lifelong protection they need. Society is going to change just so much to accommodate our children's needs and then it will stop. Prepare them for that stopping point.

So as we come to the end of autism awareness month and we journey into the rest of the year without society giving themselves a pat on the back for their own magnificence in recognizing autism as a major issue, we need to remember that WE do not need someone else's permission to do what needs to be done for our children. You do not need to join the "autism club" or seek out other's acceptance of your ideas, therapies, or support systems, to have children that go on to lead successful and productive and happy lives. You simply need to take each day, each moment, each hour if necessary, and do what needs to be done to give your child the future that they are entitled to have.

Until next time,


Elise











Monday, April 23, 2012

Female Genital Mutilation

While this blog focuses on autism I have written numerous times that autism is not the only issue in the world. I have begun to write also about the abuses and misogyny in the world that goes unchecked. No I am not writing about the nonsense that insurance companies won't pay for condoms of adults who want to engage in sex. I am talking about the real abuses of persons simply because they are women. This is not first world "spoiled" women's issues, but third world life and death issues.

In the Guardian yesterday there was an article that discussed the practice  of female genital mutilation in the UK. It states that over 100,000 girls in the UK have been genitally mutilated. This consists of the removing of the clitoris, the labia and the sewing together of the genital area, leaving only a small area for urine to escape.

There is no medical benefit in reality or theorized, to this "custom." It was instituted to remove any sexual desire from female family members so that they do not dishonor the male members of their family. If this happens, if a female member of the family is perceived as having been sexually indiscreet, then the family members usually the father and brothers will kill her. Honor murder, an accepted part of eastern culture, is another issue of women's rights that has now began to pervade the west. HERE, HERE, HERE

According to the World Heath Organization there is believed to be between 140 to 100 million women who have undergone female genital mutilation. With 92 million in Africa alone.  READ HERE.

Meanwhile watch these clips about fgm. None of what follows should be watched by children.






View Female genital mutilation and over 3,000,000 other topics on Qwiki.



More articles on fgm:

FGM Rife in Egypt
FGM from the World Health Organization
FGM and the Silence of the Left
In Kapchorwa
Voice of America


For more information on fgm:

Ayaan Hirsi Ali Foundation

Directory of anti-FGM organizations:










END FGM
- European campaign, run by Amnesty International Ireland with support from NGO's - facebook
STOP FGM/C
- international campaign using the media (print, broadcast & web) to bring an end to FGM - facebook
GLOBAL ALLIANCE AGAINST FGM
- founded in 2010, Canadian-German run portal/organisation which aims to bring anti-FGM voices together
TASK FORCE FGM
- protecting European girls from Female Genital Mutilation - twitter - facebook (German language)
STOP FGM NOW!
- unites associations, companies and individuals in an effort to put an end to FGM - twitter - facebook
END FGM NOW/JULIA LALLA-MAHARAJH
- independent voice fighting against FGM - twitter - facebook - blog
MASHUA AGAINST FGM
- blog by Kenyan woman, assisting US refugees who have suffered from FGM - twitter - facebook
WHOA! aka The Alliance For Protection Of Girls From FGM
- founded by eight organisations - twitter
THE FEMALE GENITAL MUTILATION/CUTTING NEWS BLOG
- bringing together the latest FGM global news stories
THE FEMALE GENITAL CUTTING EDUCATION & NETWORKING PROJECT
- disseminating material related to FGM
2 MILLION PEOPLE AGAINST FEMALE CIRCUMCISION
- facebook group, now numbering over 300,000 members
FORWARD UK
- UK: African Diaspora campaigning for rights of African girls/women & against FGM/Forced child marriage
FGM NATIONAL CLINICAL GROUP
- small NHS department run by the UK's Royal College Of Nursing
CLITORAID - Restoring A Sense Of Pleasure & Dignity
- medically rebuilding female clitoris' - you can adopt a clitoris here
SOSFGM - German Emergency Helpline
- Get legal help, inform on planned mutilations, and FGM education (German language only)
+ some German organizations working to end FGM, can be found here (click logo's on right of page




It is only when we get angry about issues that do not effect us directly do we fulfill our duty as human beings.

Until next time,



Elise

Saturday, April 21, 2012

The Next Leg of the Journey - The Right Path

So we have come to a bit of a standstill in our task to get CM1 onto the next level of his education. The issue being what is it going to be? I have written for awhile now about him taking the law boards and applying to law school but suddenly hubby is not certain that that is necessarily the right path for our son. Not because CM1 wouldn't be able to excel at law school. By all indications he should be rather good at it. No, its about the law field itself and the fact that lawyers can not find jobs, the law practice is changing and whether CM1 wants to practice law or use a law degree to branch out into another area of the world.

So here we are sitting quietly and hubby springs this idea. Fine. I have no problem with that. We discussed what to do. I bookmarked several graduate school websites and we are going to go through them to see if  there is anything that strikes CM1's fancy. The truth be told, Forbes came out with a list of the top ten jobs for the future. You can rest assured lawyer was not one of them. There was engineering, business and healthcare (therapists). Now the reason that CM1 never pursued any of these before is simple..he hates math and can't do math beyond basic high school math. In fact he hasn't taken a math class since high school.

CM1 had been interested in forensics in high school, but the last year of physics and pre-calculus aggravated him to no end. He actually did well in both classes but it was a struggle and very very very anxiety provoking. So when he saw that for a biology degree in college he needed physics and higher level math, that was the end of that. Now he has registered though for a forensic chemistry class for the fall and we found out that all he needs for that class is highschool level math. Nothing fancy shmancy. I hope it works out. I definitely think we need to move CM1 out of his comfort zone and let him see more of the wider world.

So as we continue on this quest to figure out if law really is his calling, I have looked at some management programs in the area. Brilliant-computer-sis warned that alot of these programs do require higher level math so I am trying to do some research. I have looked at the course list and while there is no finance, accounting per se, we will need to see just how much math is required in the study of global marketing, urban renewal and health administration.

We are thinking at this point to try to have him take a class in marketing or management at the college. It does not look like he is going to be getting an internship. After sending out dozens of resumes and not one call for an interview there comes a time when you need to accept the fact that nothing is going to happen for this youngman right now. He couldn't even get a job at McDonald's. Or as s supermarket checker.Those are all taken by adults. The traditional jobs that a teen or college student would be able to get during the summer does not exist around here anymore.

So that is the plan right now. Maybe a course outside his comfort zone and let him see if there is something else that sparks his interest. He is already signed up for the LSAT and this summer I will try to get him accommodations for the GRE if graduate school is the way he wants to go. Interestingly some of the graduate programs don't even require a GRE unless you do not have several years of work experience. Now he does not have that of course. But in reality how many recent college grads really do?

On another note, hubby did mention that law may be the way for CM1, merely because he is genetically predisposed to it. It's why people follow in their parents footsteps. Not because they can't think of anything else to do, but because they are more inclined to that profession. Perhaps that is why you have families of doctors, lawyers, accounts, businesspeople, artisans and professors, etc. This is what simply comes naturally to everyone. Who really knows right now. We could also be over-thinking the entire episode, but we want to make sure that if we set him on a path that it really is the right path for him.

Now CM2 is another story. He has always wanted to major in computer science. He loves computers and his goal in life is to create computer games. Problem is he is not very independent in his classes and the professor is of the opinion that this is not a major for him. I kind of became annoyed with that response. I have lost count of the number of times people have told me that the boys can't do something. So I am not one to say "oh, OK" if a professional tells us the boys shouldn't....

Of course this may be a different situation as the professor has been teaching CM2 for two semesters and he sees how CM2 functions in class and on his tests. Honestly if you cannot maintain an A or high B average in your choice of major, it is probably not the area for you. Now CM2 is not doing that well in these courses. Not certain what the issue is. We are trying to figure it out. He even has a tutor.

Yes I know he has a math disability and so much of the computer science is math or math related but I think there has to be a way around the issue. He is registered to take another computer science language next semester and I am told that BASIC is much easier than JAVA. Honestly I have no idea what to really do. We have never told the boys they can't do something. We have always told them if you want to do XYZ and it is difficult you need to figure out the way to do it. So maybe one more semester of computer science to see how he does. Perhaps it is the professor. Perhaps it is the type of computer language. Perhaps CM2 needs to get off his butt and work harder than he is willing to.

Problem is when I told hubby what the professor said, his initial response was that the professor may have a point. CM2 may not be cut out for this major. But on the other hand, CM2 has given us so much trouble about putting in the right amount of effort in school, not sure his issue is not effort related rather than understanding related. I suppose either way it may not bode well for what he wants to study. I just wish the boy really listened when we tried to explain this to him.

So anyway here is where we are right now. It's a type of limbo that I really am not used to. I have always had a direction for the boys and I have always knew where to point them. The issue is making certain that in today's world CM1 studies something that is practical and realistic in graduate school. Hubby is determined to get him away from holocaust studies. Even most of his history courses are depressing, talking about subjugation and annihilation of one people over another. Hubby says he needs something positive to study and something that looks to the future. I agree. That is why urban renewal or public health or international global markets may be the way to go for him. Get him away from the sadness and into something that brings hope.

Now CM2..he is a totally different story. What that story will be I have no idea. But what I do know is that he really cannot put two and two together and figure out that with a little more effort he would truly have an easier time at school.

So here is my recommendation for all you parents with children starting middle school into high school: make certain in your transition plan there is a way for your child to branch out and to take courses that may not be exactly what one might think they would enjoy. Challenge them. Don't let them get comfortable with studying only what they are used to. Make sure the schools have them take classes in every area and even if they go to a technical school make sure they are exposed to the wider world. (Yes there are the across the board classes that student take in college but its not the same thing as hands on experiences.) I think this was our biggest mistake. We allowed them to get comfortable in their little spheres. Yes I know the boys are still very young and have quite a ways to go..but it would have been better if we had started this leg of the journey alot sooner. It's the aimlessness that bothers me. Not knowing what's out there too is a problem...

Websites, books and research that is now the name of the game....we might end up where we began. But at least we would know that we looked at the wider world.


Until next time,


Elise


Thursday, April 19, 2012

Z is for Zenith

Zenith the highest point reached in the heavens...

May our children find their zenith. May they know freedom, love and joy. May they be embraced for all that they can give the world and understood for all their needs. May they fulfill their true destiny....May they paint with all the colors of the wind.....




This is the end of my journey through the alphabet and autism. Thank you for coming along on my trek.

Until next time,



Elise

Wednesday, April 18, 2012

Holocaust Memorial Day - Yom Hashoah

Tonight begins the Jewish holiday when we remember the victims of the Holocaust. It is called Yom Hashoah. In Israel tomorrow morning a siren will sound for two minutes and the entire country stops. People stop walking. People stand in their spots. Students stop learning. People stop driving. The radio and TV become silent. No one and nothing moves inorder to remember those murdered for the crime of being born Jewish.



As I mention every year at this time, Yom Hashoah means alot to me not simply because this is a  fiercely proud Jewish household, but because before the Nazis began to kill the Jewish people of Europe, they practiced their genocidal tendencies on those considered mentally and physically infirm...the disabled. While autism is never specifically mentioned in any detail in the Nazis archives, we as parents of autistics know full well that our children would have not survived the Nazis onslaught.

The irony is that in many ways things have not changed in society. The lives of the disabled are not valued as equal to the lives of the neurotypical. 70% of all hate crimes in the USA, alone,  last year were directed at Jews or Jewish institutions. Worldwide antisemitism is at a height not since since the Holocaust. Please read once again Social Justice, Humanity and Autism. It is important to always remind ourselves how precarious is our children's place in this world.

It is also important to remember that the Nazis were successful only because others not only turned a blind eye as to what was happening, but because the world actively helped.  The world willingly sacrificed the Jews and the disabled in order to garner peace with evil..it is called appeasement. Genocide does not happen in a bubble. Not 70 years ago and not today.

Today we mourn those that perished not because they committed any crimes, not because they wished harm or death upon others, not because they declared war on others. But they perished merely because they were and they had no way to stand up for their own right to exist. From the great movie Judgement at Nuremberg





This is the picture so indelibly associated with the genocide of the Jewish people....




This is today....
Israeli female combat battalion.



Eleanor Joseph Arab-Israeli army officer.


I prefer today. Whether the world, or trembling-Israelites, like it or not. Meanwhile HERE is the working definition of antisemitism from the European Union. Take note that antisemitism  includes but is not limited to denying the Holocaust, accusing the Jewish people of world-wide conspiracies, accusing Jews of being Israel-firsters, denying the Jewish people the right to self-determination or that Israel is a racist endeavor. 









Related posts:
Holocaust Remembrance Day
Last Thoughts on Holocaust Remembrance Day
Teaching About Prejudice
Racism: The Danger of a Single Story


Until next time,

Shalom,



Elise



Sunday, April 15, 2012

The Tale of the Jewpacabra*

Honestly I never watch South Park. Don't really think much of their "humor" is generally funny. But the other night as the family sat in front of our erstwhile television set, we happened upon the latest creation out of the minds of Trey Parker and Matt Stone. By the way, no, we have not seen the Book of Mormon either even though we live not far from Broadway.

Anyway in this episode the South Park braintrust had the resident anti-Semite, Cartman, concoct some story about a "Jewish" themed chupacabra, so he could have all the Easter eggs to himself during the Easter egg hunt. But as usual for Cartman, his plan backfired, and he ended up tied to a stake as a sacrifice to the Jewpacabra.

Now for those of you who do not know what a chupacabra is..it is a Mexican devil animal that eats and kills goats. It is said to have magical powers and is the spawn of Satan. Yes the chupacabra is part and parcel of the lore of cryptozoology along with the Yeti, Bigfoot and Nessie.

What you also need to know is that along time ago, OK, in some parts of the world they still believe this, people used to think that Jews used the blood of Gentile children to bake their matzoh. I know....I kid you not..how gross and how unbelievable.Yes there are people who are that stupid in this world.  By the way, if you ever hear the term "blood libel," this antisemitic charge is where the term originates.

Hence Cartman's creation of the Jewpacabra....

Meanwhile this entire South Park episode revolves around how the grownups in the town are willing to sacrifice Cartman to save themselves from the Jewpacabra. And of course, Kyle, the lone Jewish student in the town rescues the semi-functional anti-Semite Cartman from his fate. Thus upon waking Cartman thinks that a miracle has occurred and converts to Judaism...no doubt until he finds out there really is no such thing as a Hanukkah bush. (Seriously there is not. Sorry to disappoint.) FYI- CM2 was really insulted that South Park let Cartman into the "Jewish club" considering he is such an antisemite.

My entire thought during the  episode is that a blood-sucking-goat-eating-Jewish-wild-animal has nothing on my boys. Considering the amount of arguing, kvetching, complaining, yelling, name-calling and door slamming that goes on in our house, I can tell you that the Jewpacabra lives with us, and that there are two of them. They also don't suck the blood out of their parents, they just make their parents' hair gray and at times, puts the parental units on the edge of having an ulcer or two, or three. Interestingly these two boychiks of mine do have an uncanny Satanic ability to drive their parents to drink that glass of chardonnay as well. (OK, this could also simply be the teenager in them coming through, no "Jewpacabra" channeling at all....)

On the other hand, those that think the Jewpacabra truly exists may think twice about coming to our house especially if you think that a cryptozoological animal has to have four legs and fur. These are the Jewpacabras  you should be afraid of....

Hebrew on the poster says..this is the generation that seeks God...


FYI the ten pound bichon is the most ferocious. Go near her food and she will rip your head off. Well that is what she does to the 70 pound labradoodle when he gets in her face. The wheaten terrier, understandably just watches them both, shakes his head, sighs and wonders why he ended up with two such batshit crazy canis lupus familiaris as siblings.


Until next time,



Elise

* Jewpacabra is wholly owned, conceived and storified  by the creators of South Park. I borrow it without their permission...if they object to my use of the term, they can contact me.







Friday, April 13, 2012

Y is for You

A repost from June 10, 2009. 

One of the most important subjects concerning your child is you. You must take care of yourself. It was the first thing the therapist said to me when my oldest was diagnosed. You will do your child no good if you are unhealthy, stressed and depressed. I guess she had noticed the state I was in. Years had gone by without an understanding of what was wrong. He had had so much trouble in nursery school, the pediatrician had no idea what she was dealing with and the public school system where I was had bullied me into removing him from the kindergarten class. I couldn’t find a private school that would take him.(15 years ago the rights of disabled children weren’t so well known and I had no idea what he was entitled to.  Today it is a different story. Not only do I know the law, but there are the websites, chatrooms, and info boards to turn to. Thank God for the internet) I was a wreck.  Part of my problem did get solved because we moved to a school system that followed the law without giving the parents a hard time. (Yes, the debt we incurred was enormous. But at times, life is what it is and anyone who tells you to save, save , save never had a special needs child) .
Here is a list of items you should always be aware of for yourself:
1. EXERCISE. This reduces stress. If this can help then maybe you won’t have to do the anti-depressant route. I can’t tell you how many moms I know live on SSRIs

2. NUTRITION. This is not just for your child. You need a balanced diet to remain healthy. Eating the left over grilled cheese will not give you the strength to work through problems and confront the issues you face.

3. DOCTOR VISITS. Make sure you see your doctor. Go to the gynecologist, dentist, family doctor for regular check-ups. If you do not catch issues before they flare up you will be of no use to your child. Remember, the teeth are the root of your body. Tooth decay has been linked to everything from headaches, to heart disease. Heart disease is the number one killer of women.

4. HOBBY. Have a hobby. Something that makes you happy. I had been crocheting, then took up needlepoint and now I knit. The crocheting and knitting were very productive. I make blankets for Project Linus www.projectlinus.com. This is a nationwide organization which gives out blankets (crochet, knit, quilt, etc) to children in hospitals, foster care or to TAPS  www.TAPS.org  which is a support organization for children whose US military parent has died in war. I can’t tell you how gratifying it is when I get the newsletters telling about the thousands of blankets given to families for their children. It also has the added benefit of keeping me grounded and recognizing what is really important.

5. GO OUT. Go out with your spouse or friends. I see friends for lunch. I meet my sister for a Saturday without the family and my husband and I have Home Depot dates. It is important to do something fun without the children. It is also important for your marriage. I know marriages suffer terribly when a child has this disability. I also know that I am one of the lucky ones with a husband who could eventually deal with his children’s problems and understood that it is about them and not him. But we also do not go out to dinner, we rarely see a movie, we spend time together running errands on the weekend. It is the time that counts, not what you do.
          I also never made too much out of occasions. He has the type of job that he basically works 24/7 and would work 27/8 if that was how the world kept time. Make sure that your emphasis is on what is really important. How does he treat you, does he just hand over his paycheck because you pay the bills and take care of the children, is he there for the children- spending what little time he has with them helping them with issues,  does he understand what he needs to do for them and most of all does he make sure that his side of the family does what the child needs and gives them no choice in the matter. Being home for an anniversary instead of the office is not really what is important.

6. PRIORITIES. Keep your priorities straight. Find support groups either in your town, school or county. Join a religious center for support. Sometimes they have support groups for parents of special needs children or there may just be someone to talk to. Check into the PTA in your school district, they may have a special needs network. Talking to others will help you remember what is truely important during some of those times of sadness.

7. VOLUNTEER. Help someone else. ( Project Linus, helping with the PTA, going to the local hospital, united way, junior league, religious charities, etc) This will also give you a good perspective on others realities. It never hurts to get a swift kick in the butt when you are feeling sorry for yourself.

8. ASK FOR HELP. It is not a sign of being an inadequate parent to ask for help. Ask a relative, friend, husband to watch the children for awhile while you decompress. Ask the school for ideas and get a doctors idea for help and support. Go to the county or social security to see if you qualify for services. Find out what is available in your area for special needs children  either from the county health office or the local autism chapter.

9. WORK. Most women have to work, especially with the costs associated with special needs children. You know what. It is OK. It is also OK to enjoy your work. It is also OK to be glad to be at work. It is also OK to acknowledge that it is not easy to organize everything your child needs while you are at the office. It is OK to say this is hard. It is OK to acknowledge that we have been fed a load of bunk about having it all at the same time. No-way no-how especially with special children. Acknowledge that you are doing your best, that this having it all is just nonsense and that you are more than adequate, you are great!

Lastly and most important: it is OK to be scared out of your mind.  Acknowledge it, embrace it, defeat it! Yes you can! 
You are important. Don’t forget about your self.

Related Post:



Until next time,


Elise

X is for X-Men, Anime and Cigars

Here is a look at the X-Men anime series....



Yes, it is in Japanese. No the boys do not speak Japanese. Usually these anime series do come with English subtitles. The boys will watch anime for hours on end. They also enjoy the music for these series as well. The music is also in Japanese only, and no there is no English translation. I asked CM2 about it once, he said the tunes are catchy.

I am not truly certain what any of this means...
I don't know if Japanese is easier for them to tolerate listening to than English.
I don't know if they really are drawn to the anime style of cartoon and how they draw people.
I don't know if it has something to do with the way they view the world and the anime speaks to that.
I don't know if its the stories. CM1 just sent me a link to an anime series set during one of China's dynasties and being a history major he thought it was great.

Of course, it could just be that they enjoy the stories, enjoy the pictures, that they can read the dialogue and do not have to concentrate on the language being spoken and/or  quite frankly they may just like the fantasy aspect. They could also enjoy all these anime series simply because when it comes down to it,  its all  just alot of fun.

Sometimes when it comes to our children we need to remember that not everything has an underlying cause or concern or even a purpose.  We need to remember at times, when it comes to our children, that sometimes a cigar really is just a cigar.


Until next time,



Elise

The Message in Your Way

The is a column from 2009. I repost it every so often just to remind myself how lucky I am.

Today I would like to address you, the parent, the caregiver, the person who carries the burden on your shoulders of a child out of sync with the universe. How do you handle the day to day grind of helping your child fit in and understand this world that is so alien to them. How do you teach them what it takes to belong and what it takes to just be happy in life? Honestly I just do my best. I know to stay on top of any issues and try beyond reason to anticipate anything that may occur. I think I become someone who looks for problems, someone who has become at times dark in my thinking about what awaits my children and what hurdles need to be overcome and how to fight those who will try to stand in their way. And yes, there were times that I felt sorry for myself, my husband, and most of all my children. I know it is a human reaction and one that is likely to occur but I cannot say it is a reaction that I liked about myself or the type of person it made me.

You blame yourself, what did I do? Was it something I ate during pregnancy, was it the Tylenol the doctor said was OK during the really bad head cold, maybe the anti-biotic that I needed for bronchitis, or maybe it was that cup of real coffee or that glass of champagne on my birthday. The nagging questions are always there. I even have gone so far as to ask what sin did I commit, since the Bible tells us that the price for our sins are visited upon our children. Was I really that bad a person that my children were so punished? What did I do? Internally  I raged against God and all that heaven had wrought upon my little loves. I rejected heaven and cursed the fact that it existed. I gave up alot of my soul to anger, resentment and a feeling of abandonment.

Now I do not know if any of you reading my blog believes in God or Mother Earth or the concept of nature made whole, but I found that once I stopped being so angry all the time I was able to see the messages that were being sent to me.  I write alot about doing "good works." Taking time for others whether its helping the PTA, ASPCA, United Way, a religious organization, raising money for some type of medical research or my favorite right now, kitting blankets for Project Linus. But there are messages around us all the time. One of the things I volunteer for is being a parent member in my town. That means I sit in on Special Education Committee sessions to help newly designated children receive the necessary supports in school. I have to tell you whenever I feel sorry for myself I receive a message. Whether its the child who is starving themselves through anorexia, the one who is making their way out of rehab, the child who is suicidal, the one who can't leave their bed because of anxiety,  it reminds you that trauma is not just yours and yours alone. That there is a world of pain and maybe just maybe the fact that your child can get better is the blessing that you were given because you did not sin, because you did eat right and did all the pre-natal things you were supposed to. Maybe all those years I had it backwards. You see, it isn't about what we don't have but what we do have. And what we do have is the ability for the boys to have any future no matter what the struggle to get there if they want it want it bad enough.

I know that I always get messages. On my way last year to a seminar on transitioning from high school to college for aspergers students I was sitting on the train feeling very sorry for myself and collegeman. I kept thinking when is this going to get easy for him. He is just such a sweet boy and a good boy and a hard working boy. He is such a caring child why does every thing have to be so hard for him? Well you know how that self-indulgent crap goes. Anyway, I was wearing these beautiful "evil eye" bracelets that I had bought from an organization called TAPS, which helps children whose parents had died in Iraq and Afghanistan with counseling. The beautiful beaded bracelets are actually made by Iraqi women and sold here. I wear it, because as a Jew, the fear of the "evil eye" is quite a huge bubbemeiser (grandma story) and well, it couldn't hurt to have a little help...you never know, .

Anyway, sitting next to me on the train, was this truly lovely woman who asked me about the bracelets. I told her where I purchased them and wrote down the URL for the group. We struck up a conversation. She was heading into Sloan Kettering Cancer Hospital to be a parent counselor for parents whose children had been newly diagnosed with cancer. You see, that day was the one-year anniversary of her daughter's death after a five-year struggle with cancer and she wanted the bracelets because her daughter had some "evil eye" bracelets but she couldn't find them, so she wanted to purchase new ones in honor of her child. She wouldn't take mine, I offered. The train came to the station and she went to get off. I had to giver her a hug. I did not know what else to do. Then I realized I had been sent another message. I suppose the messages throughout the years that I had been sent weren't obvious enough so God/Universe/Nature had to give me one more huge smackdown.

I do know that no matter what since that day whenever  I wear those bracelets I think of her. Her daughter and their struggle. This woman's spirituality will never leave me. I don't know if I believe in angels sent by God, but I do know that this woman, whose name I never learned, who was going to help others on the anniversary of her daughter's death is probably pretty close to what one would term a human "angel."  I don't feel sorry for any of us  anymore and you know what I don't think I ever will again.


Until next time,


Elise

Thursday, April 12, 2012

Dissing the SAHM...

When I was a young girl there was a war on women who chose to stay home and raise their families themselves. You were told that only the brain dead or the ignorant gave up careers and education to stay home and play patty-cake. You were told that you had no worth if you chose to spend your life taking care of your family. You were told that your worth only depended upon the size of the paycheck you brought home.

You would have thought that we were beyond that  in our society. You would think that it had finally been acknowledged that those of us who stayed home to raise our children were just as intelligent, educated and thinking women as those who chose to stay in the workplace. You would think that it would be understood in our society that people make the best choices for their lives and what is important to them. You would think that in our society it would be time that women learned to respect the choices of other women. The irony is that if a man derided a woman for staying home to rise their children we would call him a misogynist. Honestly, I think the same can be said for women who deride other women.

Actually I should not be surprised by this attitude. A few years ago I attended a seminar on transitioning students with autism spectrum disorders from high school into college. We had to let everyone know in the class what brought us to the seminar. I of course told everyone that I was the parent of two boys with ASD. Not one person spoke to me the entire week until on the last day they found out I had a law degree. People literally turned their backs on me and the psychologist in charge made fun of the questions I asked. (They were too simplistic and uninformed for her.) Apparently these "professionals" are very interested in the autism community but have no desire to actually interact with those of us who are raising autistic children. Yet lo and behold, once they found out that I had a law degree well the questions came fast and furious. And yes the majority of people in that seminar were other women including the main lecturer.

I have nothing against women who chose to work outside the home. I do not think it is our "duty" to stay home. I also am intelligent enough to know that most women who do work outside the home do so out of necessity. Honestly no matter which choice you make it has its pitfalls and its issues. I also couldn't even think what would be the situation if I had to work and raise two special needs children.These choices are not easy choices to make. We as women need to respect this reality and support our sisters in which ever situation they find themselves.

But what I want to know from these pundits and "feminists" that deride what I have chosen to do with my life, who do you think you are?  Who are you to deride a life choice and tell us we do nothing? And yes this is about the attack on Anne Romney and the pundit who said she had never worked a day in her life. (PS I don't care who you vote for in the election. This isn't about that.) I do not care that others chastised her for her comments, this is how she and her cadre think. This is how they react to other women.

Or was it her failed attempt to remind everyone that the Romney's have alot of money. Well too bad...the Romney's are filthy stinking rich. Wish it was me. Wish I didn't have to worry how to pay for therapy, college and support systems for the boys. Wish I didn't have to worry about the future and wonder where the money was coming from. Wish I didn't have the freakin' debt that I do.

But what I don't feel is resentment that others like Anne Romney don't have these worries. It also doesn't mean she doesn't understand what it takes to raise a family, run a household and function in society. It just means its easier for her to pay for everything. It also means that by making the choice to stay home, she didn't have to decide what her family will do without. Again wish that was me. That is all.



I am so tired of being told I am nothing. That my contributions are nothing. That I am less of a human being because I was lucky enough to have the ability to make the choice to stay home with my boys. But one thing I will tell you is that I think its time these women who hate on the SAHM get some serious psychotherapy and figure out what their underlying problem really is.

OK..rant over with for now...


Until next time,


Elise


Wednesday, April 11, 2012

Appropriateness and the Greater Society

Just when you think your children do not listen nor heed any advice you give them, they surprise you.

Last night at dinner, as per our usual conversation, we were discussing something political. It also happened to upset CM1. In his usual manner CM1 then shook his fists to show that he was angry. This made CM2 upset and told his brother to use his words. He told his brother that shaking his fists in the "greater society" is not appropriate. Hubby said that CM2 was right that CM1 should use his words, but at the same time,  home is also a safe place and neither of the boys should be afraid to be themselves here.

Then we worked with CM1 to get him to express his feelings about the discussion. No it is not easy for him. This is why he also went back into speech therapy at 21. But being able to express yourself appropriately in the adult world is part and parcel of being functional in life.

Well Lord love duck...who knew. I can't tell you how happy I was to hear that come out of CM2. It is events like these that make my day and basically keep me going. As I have always said there are accepted ways to behave in society, there are accepted ways to talk to people, there are accepted and appropriate ways to deal with issues and present yourself. Will it be easy for them? It hasn't been so far, but that doesn't mean they give up and stop working on being able to get along in society.

In truth if you can not carry on a conversation, if you cannot interact on the simplest level at a market, the DMV (etc) or  even at a family gathering you will NOT end up choosing your own future. This is about independence pure and simple. Communication, and appropriate communication for certain, is required for self-actualization, don't let anyone ever tell you otherwise.

If you are looking for an easy solution to answers, I am sorry there are none. There is alot of hard work and repetition and teaching and hand holding and cajoling and calming and support, but there is no magic pill, nor magic bullet. Yet as evidenced by CM2 recognizing that there is a way to talk and behave in a conversation you know they get it. It doesn't mean they will always be successful at it. Heck noone is successful 24/7 at anything they do, but what it means is that they accept the fact that life is not on their terms and noone owes them a darn thing. It's called growing up. Sadly it's time for some parents to grow up too.

Listen what happened with CM2 just last night is why I tell parents to never project what will be for their children. Take each day as it comes. Take each moment, each hour, even each second if need be and do what needs to be done. Then one day you will look back and realize just how far your child has come. You will then know, in that exact moment, a future of their choice is possible for your child, no matter what anyone may tell you or lead you to believe.


Until next time,


Elise

Related posts:
The Art of Conversation
Youthful Reality
The Language Issues Con't
My Life is an Episode of the Big Bang Theory
Politics, Hitchcock, Patience or Raise Your Damn Hand
Manners, Etiquette and Social Convention
Fractal Moles, Unanswered Emails and a Totally Inappropriate Parental Response
Sassy Mouth
From Few Words to One Kvetchy Kid 
Charlatans, Autism and the Reality of What Helps 
Pragmatic Speech, the Autistic Mind and Telling Your Professor He is Wrong 
Sibling Relationships and Mindblindness
Mindblindness, Obstinancy, Aspies and Adolescence
Is French Parenting Superior?










Tuesday, April 10, 2012

W is for Wellness

Of all the words associated with autism spectrum disorders the word "wellness" tends to be a loaded  term. Honestly I don't truly understand why but it is. There are accepted medical practices which add to a person's wellness. There are known things that detract from a person's wellness. Why this has become a bruhaha I will never know. So let me tell you what follows in this post so if you disagree with my perceptions you can stop reading now:

Wellness means:
"The condition of good physical, mental and emotional health, especially when maintained by an appropriate diet, exercise, and other lifestyle modifications...."
"...a dynamic state of health in which an individual progresses toward a higher level of functioning, achieving an optimum balance between internal and external environments."

I do not follow any regime that has a chance to harm my children. I do not give them supplements, and diets that are not supervised by a doctor or approved by the FDA. I also do not give them medicines that have not been approved by the FDA and then have not been studied for decades. I do not allow anyone to tell me that they have a cure-all and the magic pill or therapy. If it sounds too good to be true..it is.

Point: If you think the government is in cahoots with big pharma to deprive your child of a cure. so they don't approve idiotic dangerous stupid crap like chelation, medical castration drugs, oxygen chamber therapy or some sick new form of modern lobotomy.you need to go else where. This post is not for you. Read The Thinking Person's Guide to Autism for information about all these therapies and their dangers. Also read TPGA  for information about therapies that do work too. (OT, PT , speech, ABA, Lovass, social skills, behavioral, CBT)

I keep my feet firmly planted on the ground and provide the boys with a balanced, nutrient rich diet. I insist that they exercise. I insist that they take their vitamins. I insist that they understand how their body works and what is best for them. I teach them about self-care, hygiene and responsibility. I teach them that if they expect to live a long life, they need to live a healthy life.

Now how to do this:

Food. Many of our children are on restricted diets either self-imposed or because of allergies. I do not hold that gluten and casein free actually is the way to go for every autistic person. In studies it only seems to have any kind of effect for about 30% of the population. But yes, I had the boys tested for wheat allergies. I had them tested for celiac. I had them tested to see if they are allergic to anything and everything. I even tried a modified gluten diet for a summer. Nothing, nada.

Remember there are necessary nutrients in food that contain gluten and casein. Remember that a growing child needs a different diet than an adult. Remember that if you are going to try diets you need to hire a doctor who understands  nutrition, oddly most  do not, or a really good nutritionist who will teach you how to supplement you child's deficiencies.

We tried one nutritionist who insisted that food was the cure all. Wackadoodle. As I told you stay away from those who think only they have the answer. We presently are actually going to a nutritionist associated with CM2's endocrine doctor's office. Balanced realistic approach to medical issues and a  healthy diet. You need to find someone who gets your family, and what your child needs. Also be careful... some try to sell you more garbage too. Avoid those individuals like they have the plague.

Please note that many of the meds that our children take also put weight on without even trying. It is important to take your child to a nutritionist before the weight issue gets too out of control. Also don't let the doctors tell you that some SSRIs do not put on weight. These just have less of a propensity than others. But they all, even zoloft, the gold-standard of nonwieght gaining SSRIs, can put weight on your child.

If your child is self-restricted...try to give them supplements. Talk to your doctor. When the boys were little we used to give them Carnation Instant Breakfast along with their meal in the morning. The pediatrician said that it was a good supplement. Today they actually have children directed liquid supplements for picky eaters. See which one the doctor and/or nutritionist thinks would work best for your child.

Do my boys take vitamins today? CM1 does, CM2 does not. CM2 probably should but he doesn't like vitamins. He won't take them. He does eat a balanced diet and so far he has no issues. The pediatrician says at this moment CM2 is fine. CM1 does not eat as well as his brother. He loads his life with more carbs and veggies and less with B and D enriched foods. So he supplements with a multivitamin, B12, vitamin C and L-carnatine because of his antiseizure meds.

If you can get your child to eat a regular diet, try picking as much fresh food as possible. The nutritionists tell you that when you enter the supermarket to shop on the corners. The fresh items are against the walls: the fruits, vegetables, the milks/soy substitutes, the meats. If you do not buy organic be sure to use a product akin to Veggie Wash to clean your products of pesticides. Yes some products come pre-washed. We use those. Also be careful with soy. Too much soy is not good for anyone especially males. 

Truly you cannot get rid of every kind of preservative or pesticide known to man. You can buy beef that is antibiotic and hormone free. You can buy free range chicken. You can buy fish that  is lower in mercury. But you cannot screen out everything. You can only do your best. And no I do not buy any of these forms of meat. (Well I do try to avoid the mercury laden fish.) I buy quite frankly what I can afford. That too is important.

Exercise. Get your child up and moving. Make sure they get exercise and I am not talking about the school prescribed gym class. I am talking about get them on a bike. Get them on a track. Get them to run around outside. Get them on a treadmill.

Many parents of autistic children are at a loss on how to help their children get moving. It has become so de rigueur in our society that the only exercise children get are if they join a sports team. We need to remember that back in the "olden" times children actually just played outside.

Honestly with autistic children this is harder done than said. I know. Not only do autistic children need constant supervision (for safety if for nothing else), they also need instruction on how to play outside. I know mine did. Heck they still do. If left to their own devises they will just sit and sit and sit. So we hired a personal trainer for them to teach them how to exercise. In the meantime try some of these activities with your child:

Play catch.
Play tag.
Play hopscotch.
Play on a jungle gym.
Ride a bike/four wheeler/tricycle/ two-wheeler.
Take a walk.
Walk up and down stairs.

When the boys were in elementary school the district had an aide who helped them during recess interact and play with other children. When left to their own devices in middle school they did nothing outside at recess. CM1 stayed in doors and played yugiyoh cards (no not much exercise in that). CM2 would just wonder around the playground doing nothing. It used to annoy me to no extent that noone seemed interested in teaching him how to interact on that level. They decided that as long as he was walking around, getting fresh air and seemed happy they would leave it alone. This was one of those times, by the way, that you have to make a decision whether to fight or to let it go. Since the district at this time seemed to be doing thievery else pretty OK, we left it alone.

Something we also do outside in the spring and summer is to have them help with the lawn/gardening/ weeding. Let older children mow the lawn. This of course only works well if organized chaos and cockeyed lawn mowing is to your liking.

Let them help around the house. Let them vacuum. Let them clean the bathrooms. Let them dust. Let them bring clothes back and forth from the laundry room. Yes we used to call these chores. But these activities are also a small form of exercise. Besides the fact that these are necessary self-care skills.


Hygiene. Many of our children are resistant to self-care. Either because of sensory issues or because of motor issues or simply becasue they don't understand the need for it.  You cannot let it go. CM1 went to school with a boy that refused to shower. His parents did not make him. I don't understand it to this day. Finally CM1 told him he smelled and needed to wash himself. The mother asked me what he said to her son to get him to bathe. My thought was where the heck were you all these years. If the boys did not do as they were supposed to as far as hygiene, there were consequences. And no it was not always easy.

Sensory issues made toothbrushing terribly arduous for CM2. But we finally found an electric/battery operated brush that helped. There are also fluoride washes they can use, but you need to be careful to make sure they know how to spit the liquid out and not swallow it. But until that time, we used to brush his teeth for him, well into elementary school. Also the dentist was visited every three months not every six. More expensive I know, but his teeth needed to be taken care of. Human beings only get one permanent set afterall.

Showers may actually cause those with SPD pain on their skin. See if a bath is better, or even a sponge bath when they are little. We used to have the boys play in very shallow water and over the years of course the bath got deeper and deeper until they turned into showers. Actually today they do a hybrid bath-shower. They love to laze in a bathtub at the end of a day. It calms them. It gives them time to regroup. Then in the end when they are ready to come out of the tub, they turn on the shower and wash.

CM2 did not like the water on his face, so he showered/bathed with goggles. This doesn't happen anymore. He doesn't mind it. But we still have those goggles in the bathroom, just in case he feels uncomfortable.

If the water hitting your child's skin hurts, try letting them wear a t-shirt when they are in the tub. Remember in centuries past people used to bathe fully dressed in a nightgown like covering.  So its not been unheard of. Listen there are always answers its just up to us to find them.

Anyway, these are some of my ideas for wellness and your child. Add some of your own ideas in the comments if you like. Share your experiences. Tell us what worked and what didn't.

Oh and remember, that "wellness" applies to you the parent too.

Until next time,



Elise









Nerd Redefined....

From HERE on facebook....
Until next time,



Elise

Sunday, April 8, 2012

V is for Value: #10FactsAboutMe

A new twitter trend this morning was asking people to list ten things about themselves. As parents of special needs children we always tend to come in last no matter what the situation. So I am going to remember the things that makes me me and I want you to do the same. PS do not write about your family, your children, your husband...this is only about remembering who you are...

1. I like to write. (I forget everything else that I have to do if I can sit at my computer and write about autism, politics and everything else that crosses my brain. I also have tons of story ideas for novels in my head, but can't seem to get them down on "paper." I used to crochet, knit, needlepoint and do any manner of craft but no more. My present obsession is writing. However, I will help those who want to learn to crochet, knit or needlepoint.)

2. I like fashion: shoes, handbags, clothes (I don't really have alot of money to spend on any of it. I waste plenty of time looking at fashion blogs and window shopping on-line though. I also spend my life in sweats and pajamas. I don't usually wear any of the really "good" clothes I have in my closet and quite frankly I don't have any desire to wear them either. I did get dressed up for my nephew's bar mitzvah last weekend and that really was fun. But boy, I was oh so glad when I could take off those high-heels and put my clogs back on.)

3. I am addicted to twitter and facebook (Yeah I admitted it and no I do not want a rehab program for it.)

4. I do exercise to try to keep in shape and maintain my weight, only because it will help me live longer. (I used to like exercise when I was younger but now it's really a chore. I also am rather annoyed about my weight. I put on about twenty pounds due to some meds I took, however I have stopped taking the medicine-its been six months- and yet the weight is still there. The doctor told me that my thyroid is fine. So it means my diet sucks. That is not exactly what I wanted to hear.)

5. I am a proud American.

6. I am a proud Jewess.

7. I am still trying to figure out what I want to be when I grow up. (Yes I went to college and law school. What I studied was not really me, well the Constitutional law and civil liberties part was. I can't decide if I have changed, the world has changed or my priorities have changed. Probably some of everything. Would be nice to figure it out though, before I become a little-old-lady who has yet to figure out what she wants to be when she grows up. They say harness your passion. Unfortunately when your passion is making sure your children have a future it does not lend itself too much introspection, or maybe I am just using this as an excuse? Perhaps, probably oh I don't know anymore. And no I don't want to write a book about autism and "our journey." That's what this blog is all about. See that's my problem in a nutshell....I guess its back to the novels and trying to get them down on "paper.")

8. I hate housework, and that includes cooking, even though I am pretty descent in the cooking area. I am very happy now that the boys are old enough to help out in the house and they are responsible for some of the things I detest the most. (HEHEHE)

9. I watch way too much news. (I sometimes need to remind myself to turn the channel and put on something that will not give me a headache or make me depressed. Then of course I do change the channel and up pops an inane television program. I need to remind myself that besides The Big Bang Theory and about five dramas, I should turn the damn boobtube off. Oh I have started watching some Congressional programs on c-span but those people will give anyone a migraine and nightmares.)

10. Lastly I think the most important thing to remember about me is that no matter where I go and no matter what I do, I try to do it without hurting anyone's feelings. However, I will not hesitate to stand up for myself and what I believe in. If someone gets hurt then, I can't help it. I will not be bullied, insulted nor disregarded. I will not be made to feel small or inconsequential. I will not allow others to destroy my self-esteem just to build themselves up. Plainly, I am me and noone is going to take that away. If you do not like me then keep going. I will change for noone and nothing.


Until next time,



Elise

Friday, April 6, 2012

U is for Dispelling Unreality

I remember when I first started blogging and reading support forums, people did not want to hear the truth that autism is lifelong. The interesting part was that the moderators were the ones pushing what I call the "unreality" view. Oh I am not talking about "cures" or "vaccines" or any other broohaha, but that some parents are of the belief that after a few years of therapy there is nothing more you have to do for your child when it comes to autism. They believe that their child will "recover" and that the autism will then disappear.

There are all these charlatans out there who tell parents..follow our program and your child won't need a para, meds or continued therapy. Give them our supplements, our diet and our rather medically dangerous therapies and your child will no longer be autistic. Personally, I believe there is a special place in hell for people like these. Now I am not saying that diet does not help some. I am not saying that vitamin supplements are not good. I am not saying a healthy diet is not good. I am not saying exercise is not good. I am not saying traditional therapies are not good. What I am saying is that anyone who tells you that they can make your child's autism go bye-bye, you need to run the other way but first you should report these bastards to some state and federal agencies.

Honestly, people were truly taken aback when I told them on these forums that my boys were teenagers and still receiving therapy and support in school. One mother with a 5-year-old actually told me that by the time her daughter was in middle school she planned to be done with this autism crap. Meanwhile from what I garnered her daughter was diagnosed as PDD-NOS, not aspergers, and was very very very needy. I warned her that she had better be prepared for reality. Oh she did not like that at all and after that anytime I answered one of her questions she flat out ignored what I wrote and sometimes the moderators even deleted my advice.

I remember when one women complained that her son was having a major panic attack when they changed the daily schedule to go get icecream and he stood in the driveway crying because he couldn't make up his mind what he wanted to do. This bitch complained all she did was want to go get icecream and now her day was ruined. She had no care at that moment about the amount of pain her child was in because he could not decide what to do and could not move forward. She was fu**ng pissed that she could not go get icecream when she wanted to because of her child's issues.

Well I did let her have it and the moderators deleted my comment. Icecream-mom of course took offense to what I wrote telling me that I was a ...well...you-know-what. I then told her off really good again. The moderators actually wrote me an email telling me that sometimes all mothers need is a "hug." I told them that what incecream-mom needed was a virtual smackdown. I also told them that I would not be returning to their little forum. I think they liked that as I challenged their notion of unreality. I think the persons I can't stand the most in this world are the woe-is-me-parents.

I understand that parents want therapies and doctors and special ed to go away. Which one of us do not? I understand that you want your child to have a "typical" childhood. But what you want isn't what is important. What is important is that you face reality and understand that autism is not cured, not recoverable, and does not go away.

Now what do I mean not recoverable. I actually used to use that word alot when it came to the boys. But I don't anymore. They are not recovered as from a disease. Their brains are still autistic brains. They will always be different. They will always have their little quirks, their little idiosyncrasies. They will always be who they are. The only thing that has changed is their ability to understand the world around them and to help themselves function in that world. But they are not "recovered." They are they.

Now reality versus unreality does not mean that they do not progress. This does not mean that the children do not learn to handle their sensory, auditory and processing issues. This does not mean that they do not learn the appropriate social convention. This does not mean that they cannot go on to college, post secondary education and even live an independent life. It just means that they may come to the "adult" portion of their lives a little later than their neurotypical peers. Honestly, so what?

Listen all this means is that at every step of the way your child may need a bit of a helping hand. Yes some may need more than others. It all depends on how they respond to therapy, meds and how much they garner from their support.

It was put to me most recently by a psychologist who specializes in autism spectrum disorders....at every step of development there are new and important lessons for our children to learn. They cannot always learn these on their own. They may need help no matter how old they are. Its one of the reasons we put CM1 back into speech and behavioral therapy. He needed to learn the pragmatics of adult speech and behavior  in order to handle the adult world beyond a college campus. Listen at times they may need therapy to get them to the next level. You know sometimes it just is what it is.

Anyone who has been a full time reader of this blog understands that we have hired a para to help the boys through college. There was too much for them to deal with even if they lived at home. No matter how brilliant your child happens to be it doesn't mean they will "get" the nuances and the subtitles associated with the teenage and college years. Listen the average neurotypical kid needs help through this period, they wont admit it but they do. So what makes parents of autistic children think they can just wave good bye to their child at 18 and say "See yah kid...?"

But I will tell you that I have seen growth in both boys over the years since they began school. I know that they will continue to keep growing as long as we keep supporting them both figuratively and literally. It will happen that they  move on into careers and into the larger social and work-a-day world one day. But it will be on their timetable not mine and not society's.

Now what that will look like for them I do not know. I honestly have never known what any of their stages would look like. I know what I wanted to happen and then I dealt with reality. I know that CM1 did not want a para in college, but it turned out he needed one badly. I know that I did not even give CM2 a choice in the matter. Not because I refused to see that he was capable, but I knew enough that he needed the help and transition support. It turned out he needed it even more than we thought.

I know that I wanted CM1 to join clubs and try to make friends. It did not work out for him. The clubs he wanted to join were not productive or they did not really speak to who he is. So be it. But to day CM2 is going to another gamers tournament. He found a bit of a nitch. Same college, different interests, different outlooks.

We are trying to find CM1 a job for the summer. He likes to work and be a part of that aspect of society. But CM2 gets to take a summer course. He is not ready to work. He would not garner anything from it and honestly I think it would create more issues for his self-esteem. Eventually he too will get there.

It is important to remember that each person progresses in his own time. Each person progresses at their own pace. We recognize that they need what they need when they need it. We cannot rush their progress. It is not up to us. Our children's autism is not about us it is always about them.

So to those who are looking for a panacea, a trick or a magic pill, I am sorry if I did not write what you wanted to read. None of these exist. There may be therapies and diets and meds that make things easier for your child to cope and to process their therapies and support but these are not cure-alls. There is no such thing.

I learned along time ago that the boys' brains are wired the way they are wired. They were born with autistic brains and the goal is to teach them how to access that parts of their brain that gives them strength while teaching them to cope with that part of their brain that causes them issues. By the way, do you really think that autistics are the only ones with issues? Do you really think that autistics are the only ones who have to figure out how the world works? We all have issues and we all have to learn to function in society. Its just finding the best and most productive way to accomplish these tasks that becomes the goal for everyone.

That is the secret noone ever tells you. The great secret of society is that we are all searching for answers to our issues and our questions. It's just that the reality of our children's  existence is so much more in society's face. In many ways that is a very good thing. At least when we see the issues we can deal with them..too many times people suffer alone and in silence. It is the silence of aloneness that is life's true tragedy. Having to help your child deal with autism through adolescence and beyond is reality. Most of us simply call it parenting.


Until next time,



Elise