Tuesday, January 31, 2012

Books for the Siblings

While this blog is dedicated to helping parents find practical solutions to helping their special needs child, one thing that I am sure we all think about is the neurotypical sibling. What do we do for them? How do we help them cope? How do we ensure that they feel loved, wanted and supported? I have mentioned sibshops for our NT offspring before, but this post is about something else, something in many ways that may actually be infinitely more important.

BOOKS. Yes books and all that they mean, imply and entail. Friendship Circle has a terrific list of books for siblings so you can explain their brother's or sister's special needs. What happens then, when you take time to read to your NT child, is that you get to accomplish two goals: you get to explain why their sibling gets more attention at times and you also spend time with the NT sibling reading. There is teaching understanding and compassion. There is that much needed parental-child attention. There is the all important "educational reading time" wrapped into a few pages of paper.

Yes paper, not ebook. I am still of the mind that young children need to hold a book in their hand. They need to smell, feel and revel in the feel of a book. Learning is not just about letters, it is also a tactile and emotional adventure as well.

HERE is the list from the Friendship Circle. Happy Reading Time.


Until next time,



Elise

Monday, January 30, 2012

More on the DSM5

Dr. Allen Frances has penned another post about the upcoming DSM5 changes. Read it HERE. Unfortunately I think Dr. Frances misses the big picture as far as the autism community is concerned. Here is the comment I left:

Unfortunately Dr. Frances' concept that services should not depend upon the DSM shows an apparent lack of understanding of the law. Under the IDEA your child must fit into one of 13 categories. Additionally, many states have created required services for those designated under the "autism" label, which many children will lose. While special education teachers will tell you that they deal with the issue to help a child, not teach to the disability category, it does not bode well if you cannot fit your child into one of the categories.

However, another point to clarify...you don't stop having an invisible disability because you graduate from 12th grade. There are alot of needed adult services which many individuals will not be able to access because they do not fall under the DSM. The question is what will happen to them and how will society react when they fall through the cracks? Afterall they now, according to the Psychiatric Gods, have nothing wrong and should not have any problems.

The reality is that noone is that attached to the autism label that they could not function under a different diagnosis. But what it does do is redefine a huge community of people who have finally found the ability to understand themselves. They have denied people the civil right to define themselves. They have removed once again the fact that those in the autistic community are first and foremost humanbeings. The psychiatric community has no right to do that.


Tell Dr. Frances what you think.

Other posts on this topic:
My Thoughts on the DSM5: Future Implications
DSM5-Don't Panic, Think it Through

Until next time,



Elise

K is for Kindness (Empathy)

Kindness or shall we say empathy is a rather misunderstood emotion in those on the autism spectrum. There are recent studies that theorize that its not that autistics lack empathy or kindness, its just that they are so overwhelmed by their empathetic emotions that they need to turn it off or be consumed. So the issue then surrounding autistics is not that they don't empathize, but that in fact empathize too much. Autistics unlike their neurotypical peers have no filter on how to protect their own emotions and their own well-being when dealing with the vagaries and cruelties of life. I know I have seen it first hand with both of my boys.

It is never that the boys don't care. It is, without a doubt, that when they hear of a cruelty or an unkindness it takes over their souls. It is not an obsession. It is not a perseveration. It is a feeling of being lost and not understanding that they cannot solve the world's issues on their own. They don't seem to grasp at times that they can only do so much as an individual person. They feel that they in fact have failed.

So that is our mission with them. Not to teach them to be empathetic but to understand their limitations as human beings. To know that you can give charity, help at a food bank and feed people at a soup kitchen, but that in the end there will still be those who go to bed hungry at night, and that you as a human being did not fail. We can do so much as one person. They need to understand that our limitations makes our efforts no less important, not less heart-felt, not less perfect,  not less in the moment helpful and appreciated.

It is times like this that I try, despite CM1' s rejection of religion, to bring up what the Talmud says about kindness, empathy and charity:


To save a single life is to have saved an entire world. 

The Rabbis knew that human beings are just that, human beings. We can do just so much in our lives. It is the effort too that counts. A single kindness, even holding open a door for the person behind you, makes this a better world. A smile, a thank you and a helping hand, to the person right in front of you says more about your life than anything else.

Meanwhile here are some past posts about the boys, empathy, kindness and charity. The entire psychology professionals who think they understand who aspergeans or autistics happen to be, who decry that those on the spectrum have any thought of others, simply need to get out alot more and meet some of those in the autism community face to face. But that means they the so-called "Autistic Experts" would need to have empathy, understand kindness and respect people's differences, so I am not holding my breath.
 

Empathy 

Thinking Like an Aspie or the Real Uses for a Piano

If I an Only for Myself What Am I; Tikkun Olam, Asperger's and Haiti


Catch 22: Society and Acceptance, but Your Child is More than Autism


18 Year Old Aspies: "Adults" in the Real World


Autism and Animals


This Time It's Your Aspie's Fault


Autism-Attachments-Teddy Bears

Empathy and My Son with Asperger's

Autistic Boy Banned from X-Box

Political Correctness, Autism and Bullshit in General


Until next time,



Elise

Book Review: What I Wish I'd Known About Raising a Child with Autism

Yes, I have another terrific book for everyone to buy. What I Wish I'd Known About Raising a Child with Autism, by Bobbi Sheahan and Kathy DeOrnellas, PH.D. A funny at times irreverent look at the first few years after diagnosis. And some not so funny years beforehand.

Actually I am going to cheat a little with my review and link to  one by Jenny Herman, or as you may know her on twitter as @ManyhatsmommyMI.  Read HERE.

Yes that's the same Jenny and Bobbi who were my partner's in crime in coming up with the hashtag #youmightbeanautismparentif.... My position has always been if someone writes about an important topic and they speak your mind, no reason to try to best them. Just give them credit where credit is due.

Meanwhile  buy the book HERE at Amazon.

Read Jenny's further exploits in homeschooling at her blog: Many Hats Mommy.

Read more of Bobbi's musings at her blog BobbiSheahan.com.  Follow Bobbi on twitter  @BobbiSheahan

Until next time,


Elise

Saturday, January 28, 2012

J is for Joy

There are as many expressions of JOY as there are creatures on the face of the Earth:



Dutch talent Erik van den Boom is only 14 years old, but produces quality house music like he's been at it for years. This young mastermind is currently studying Physics at the university of Delft, after graduating from the gymnasium at the age of 13. When near a studio however, it's the beats that lure and the bass that gets him. Erik's dreaming big and takes a leap on winning the Nobel prize as well as fixing himself a spot amongst the producer and DJ elite of today's trance scene.

From my youth.....Three Dog Night:




As part of my education....Leonard Bernstein preforming Beethoven's Ode to Joy:



Simply because it is part of our nature:








Now the JOY of PLANET EARTH




Until next time,



Elise

I is for Inevitable? Not So Fast

This post originally appeared October 14, 2009 on my wordpress blog. It talks about the  dreams and hopes that we all shared at one time especially when it came to our children. The reality of our lives as parents of children who are on the autism spectrum is that our dreams, hopes and desires change. But the thing that we all forget is that reality changes everyone's dreams at times. you don't have to be a parent to a special needs child. The truth is that the changes WE happen to make are just so much more in-your-face at the beginning.

Life sometimes is what it is. We can not change it, but what we can do is rise above it. Yes, we change our dreams. So what? Who cares? What is really important anyway? The questions you need to ask yourself is, are you doing the best you can, on this day, at this moment, at this time? If you answered yes, then you are OK and so is your world and the world your child inhabits. We can't be more than what we are. All we can do is try.

The truth is that many people, upon hearing the diagnosis of autism, have this feeling of inevitable doom. It does not have to be that way. I still remember in the doctors office when we received CM1's diagnosis. I did not feel doom. I did not feel defeated. I felt that no way was someone, anywhere going to deprive my child of a future. Nothing is inevitable and I went out to prove it.

In fact, I still fight the establishment to this day when they tell me that CM1 can't go to law school. If he wants it then we will find a way. No matter what the boys want to do we will find a way. Remember they are "different not less," and as human beings nothing is inevitable unless you give up.

So yes, We Change our Dreams., I dream about truly important things now.

******


You know that dream you had as a young adult that when you finally had money enough to buy your own home, you would make sure that there was the formal livingroom and diningroom. You spent untold hours looking through a myriad of home decorating magazines inorder to piece together what you thought your rooms would look like. You would also browse furniture stores for ideas on decoration and watch the Home and Garden network continuously.  Then reality sets in. You find out your child has autism and wow, life’s choices change. Now of course, when you first hear that diagnosis of autism, the last thing on your mind is a formal livingroom and dinigroom. The truth be told, you had known for some time that something just wasn’t right, you just didn’t know what. I can tell you that by the time collegeman was finally diagnosed at 5 it was a huge relief.
 
He had had terrible problems at several nursery schools in NYC and actually put in the coatroom in his public school on the upper east side because the teacher did not want to deal with him. Of course, I pulled him out immediately. The principal of the public elementary school actually lied to us and told us that they did not have to keep him in the school or help him. That she could not do anything about the classroom teacher and that I had to pay for the aide myself. (Evil Bitch) You learn things over 15 years. We had decided to move already as suggested by our psychiatrist, so don’t even think that we had money to sue. At that point we just wrote a letter to the then mayor of NYC, you know America’s mayor Mr. Giuliani, and the head of the school district. I am still waiting for a reply from both of them to tell me how they are going to help my son. We did however, get a call in April the following year asking where our son was, since he had not been in school since October the year before. Hubby told them he had not been in school for 7 months and thanked them for finally noticing.  He promptly hung up on the morons. They never bothered us again. (By the way, we had informed that cow of a principal that we were leaving the school that past October).
 
So here we were, newly moved, severely in debt (ironically with autistic children that seems to be a constant in our lives), with a very disabled child, highschoolboy was two and not yet diagnosed, and me in a town out in the suburbs with no idea what to do next. Luckily as I stated before we spoke to the most wonderful Special Education Director who put collegeman on the path to recovery. I know that term, "recovery" is a loaded term, but I don’t know what else to use. Collegeman was sent to programs that helped him deal with his disability and then brought back in district and mainstreamed. He will always think with an autistic brain, but he is not the child he was at five, 10, or even 15. So I use the word recovery.
 
Anyway, one of the most important things that I found to help collegeman was to arrange the house so he was comfortable. Now what does that mean. We made sure that he had his own space. He had toys, games, cards, that he just loved. He still lined everything up in order so these items had to be kept just so. Anyone with an autistic child knows that order out of chaos is essential for them to understand their world. Lined up toys or items is their way of making sense of a world they can not interpret and provides them with a sense of calm as they try to understand a world turned sometimes so painful and alien. He had a place where he liked to eat and be quiet and he liked his TV shows, videos, and video and computer games.  Now the townhouse we rented did not have a formal anything room so ignoring that space would not be a problem for us.
 
What we did do is turn the main living area, today they call it a greatroom, into collegeman heaven. Yes there was the couch  and an endtable to put a drink, but there was no coffee table. Why take a chance that someone would fall and hit their head? There was a television in an entertainment center where we wired in the video game console and kept his videotapes safe. This was also the beginning of the home computer craze, so we kept the computer there as well, so he could play his educational games. We had little plastic chairs for the boys to sit and watch TV. He really liked his chair and to this day still loves the color blue (however, being a teenager he likes really dark blue). Then we placed a cardtable in the back of the room behind the couch. This is where he spent most of his day when he was not in school. He kept his toys, cards, and obsessively lined up items just as he pleased. There was no need for meltdowns because he had what he wanted at the ready. He could navigate between his beloved items, his games, videos and computer without care and without trauma. Plus most importantly, he was always with us. He was not in the playroom in the attic alone. He was constantly surrounded by people who made him interact with them.
 
Since the boys had taken over the television and there was only one in the house, my parents, realizing I needed some adult stimulation bought me a tiny TV for the kitchen so I could keep up with the news. I think they were worried that I would go around singing the Barney song in adult company since it was all I was hearing 24/7. I thank them for that. It did keep me attached to the wider world. Remember this is way before social media  and a strong Internet influence on society. At that time, when you were alone with a disabled child, you were really alone.
 
So the cardtable and modified greatroom worked. Collegeman interacted with the family, and remained connected in someway to everyone in the house. I have a great picture of our first Halloween in the townhouse (almost one year to the day that we moved in). The boys are dressed as Superman and Winnie-the-pooh sitting in their respective plastic chairs, with smiles on their faces ready to go out and cause what ever trouble they could think of. Highschoolboy, still in diapers, seems a little unsure of himself (Halloween and highschoolboy will be another post) but collegeman dressed as Superman had a huge smile and was making a strongman pose. He looks happy, content and by this time if you look really closely the cardtable had disappeared. There was still no formal anything in our house (OK its still that way, but I think that’s just because we decided that we are not very formal people) but collegeman had progressed. Between the right school program, therapy and a home where we gave him the freedom to feel comfortable and be himself, he eventually relinquished his area of control to become a full member of the family again.
 
So we change our dreams as life meets us head on.  Brilliant-computer-sister asked me the other day what had I wanted to be before collegeman was diagnosed. You see I had wanted collegeman to talk before going back to work after he was born. I wanted him to be able to tell me what had happened during the day with the nanny. Problem was collegeman couldn’t relay a story until he was older than 6.
 
The truth be told I had dreams of sitting  on the US Supreme Court. I think if you attend lawschool most of your classmates would say the same thing. If that is not your goal, I am not sure law school is for you. But like my formal livingroom/diningroom so went my career plans. 
 
Now without wanting to disparage the brilliant persons who interpret our Constitution and keep our lawmakers in check, I actually think  that my present success will have a much longer lasting effect on someone’s day to day existence than any legal ruling by the Nine Supremes. As anyone who reads my posts knows...
 
******
My boys are making amazing progress. They are coming into their own, and deciding what their future direction is going to be. It was alot of hard work, these past two decades, on our part and especially theirs. Remember NEVER give up. Remember NEVER give in. Remember NOTHING is inevitable as long as we are always moving forward.

Until next time,



Elise


Friday, January 27, 2012

Last Thoughts on Holocaust Remembrance Day



This picture haunts my dreams.

It is a picture of Jews being rounded up in the Warsaw ghetto (Poland) just before they were shipped off to the Treblinka death camp.

I see my children's faces in that little boy.

When CM1 was studying the history of immigration in 5th grade they had to dress up as immigrants. They were pretending to go through Ellis Island. Someone put a poorboyhat on his head. It looked just like the hat that boy in the picture was wearing. When I showed up at school, saw what he was wearing,  I removed that hat from his head as soon as I could.

To this day, even though they are grown men, I will not bring one of those hats into my house...

Meanwhile apparently it has become an acceptable part of the political discourse in the United States to accuse Jews who do not agree with the Obama administration's Middle East Policy as disloyal to their country.... read HERE.....

Some nights pictures of little Jewish boys in Poland haunt my dreams.


Until next time,



Elise



Book Review: Step Ahead of Autism

If at any time you needed a clear, concise approach on how to help your autistic child, this book is the place to begin. The author Anne Moore Burnett is herself the parent of an autistic youngman named Joey. Her son went from being diagnosed at the severe end of the spectrum at age two, to a successful college student. I personally found her approach very interesting and enlightening. As a parent who has also taken her children from Pdd-Nos to a successful college career, I found Anne's ability to be able to outline, in manageable concepts, everything that had happened in my own world over the last two decades, to be rather  refreshing.

She organizes everything you need to be prepared to do. Every chapter is short and to the point. There is no beating around the bush. There is no real hand-holding. This is a book about becoming the best YOU can be, in order to ensure that your CHILD becomes the best that they can be.

Anne has created a ten step program for helping you help your child flourish:

Trust
Observe
Accept
Adapt                                                               
Ascertain
Advocate
Attitude
Authority
Delegate
Aspire

In her book she discusses each step. Tells you what you need to do in order to accomplish each goal. Then she gives you homework. Nope not kidding. There are exercises at the end of each chaper for you to read, mull over, and explore, which helps you process what she has taught you. There is no getting around it. Practice makes perfect, or as perfect as you can be in any given situation.

No, she does not do it for you, but what she does is point you in the right direction. Additionally, her tips are interesting, well thought out devices gleaned from decades of personal experience. She is that motivational coach who gives you that kick in the pants you may need, while at the same time, she is able to empathize with and understand the reality of your world.

In all honesty noone can accomplish the day-to-day tasks for you. The hard work truly is still up to you and you alone. However, Anne Burnett has devised a system, what I would call, an autism-warrior-parents' own version of an executive functioning skill.  These attributes will enable those who employ her system, to garner a better handle on the present and give you an idea on how to create a future for your child.

You can read more about Anne and her son at her website Alleviate Autism. You can purchase the book from her website or Here from amazon. Anne is also an autism advocate and offers seminars and support training for parents of autistic children as well.


Until next time,


Elise

Thursday, January 26, 2012

Holocaust Remembrance Day



January 27 is the annual Holocaust Remembrance Day. This date was chosen by the United Nations because it is the anniversary of the liberation of the Auschwitz death camp.  Social Acceptance, Humanity and Autism was written to commemorate this day and Holocaust Memorial Day (Yom HaShoah) in the Jewish calendar. It is worth another read.

Please go the United States Holocaust Museum and Yad Va'shem websites for more educational information.

It is important to remember that before the Nazis came for the Jews, they tried to eradicate the disabled in their midst. So for me this say has a dual meaning, for my boys were twice threatened by this evil society and the complacency of the world...sadly with the lack of respect for the disabled that still abounds and the growth of antisemitism worldwide, particularly the growth of Holocaust denial and Holocaust inversion,  it seems that ignorance and hate never does end. But it doesn't mean we give up the fight for understanding.

On these days of remembrance I remind myself that we are dedicated to the idea that "we do not fight the fights that are easy, we fight the fights that are worth fighting....."

As a side note: one in five German highschool students do not know that Auschwitz was a death camp.

KADDISH is the Jewish prayer for the dead. From The Jewish Virtual Library:

The Kaddish is a prayer that praises God and expresses a yearning for the establishment of God's kingdom on earth. The emotional reactions inspired by the Kaddish come from the circumstances in which it is said: it is recited at funerals and by mourners.

The word Kaddish means sanctification, and the prayer is a sanctification of God's name.

The opening words, yitgadal t'yitkadash, were inspired by Ezekiel 38:23 when the prophet envisions a time when God will become great in the eyes of all the nations. The response of the listeners to the first lines of the mourners is a public declaration of the belief that God is great and holy: Yehei Shmei rabba mevorakh l'olam ul'almei almaya (May His great Name be blessed forever and ever). This response is central to the Kaddish and should be said out loud by all present when the prayer is recited.




My recommended books on the Holocaust:

Older Elementary/Middle School:
Number the Stars
Devils' Arithmetic (also a movie with Kirsten Dunst)

Teen:
Diary of Anne Frank
Night by Elie Wiesel (Nobel Laureate)
Maus I and II

Adults:
Mila 18 by Leon Uris

A really good movie is Judgement at Nuremberg. I know that there have been dozens of Holocaust movies since then, but this movie makes more of a statement with its words than most movies do with their pictures.



Until next time,

Shalom


Elise





Wednesday, January 25, 2012

Book Review: A Regular Guy, Growing Up with Autism

Laura Shumaker, an autism advocate and columnist for the San Francisco Gate, home of the San Francisco Chronicle, has written a wonderful book about raising her son Mathew. called A Regular Guy, Growing Up with Autism. Honestly I was not quite sure what to expect when I opened the book cover, but after the first page I was already reaching for a box of tissues. It was not that the book is sad, or melancholy, quite the opposite really. I actually found the book rather upbeat about the future and what possibilities lay ahead.

                                        BUY HERE
What the book happens to be, and I think why it struck a chord,  is the it holds within its pages the truth of our lives. Her book begins with Mathew's birth. I remember the same exact feelings when I held CM1 for the first time. I recalled the hopes, joys and bargains you were willing to make with God inorder to ensure that this new, beautiful human being would never ever have one day of sorrow. I remembered all the plans for the future we came up with for our child and the dreams I would have at night. I like Laura also remember the exact moment when I stopped dreaming, I can honestly say, I still don't dream about the boys future. But what I, like Laura Shumaker, do is deal with reality and push forward. Forever pushing forward.

Like Laura, I can remember when the pediatricians told me not to worry about the boys' inadequate social interactions or lack of speech at the age of two. I remember all the excuses and all the issues that we saw but noone else seemed to want to accept, even the doctors. I can recall every conversation I have ever had about the boys with doctors, therapists and teachers, just like Laura can, only she is brave enough to share them with everyone on a truly personal level.

There is one experience early on that created an even greater kinship with Laura. One particular scene at gymboree when Mathew was about one-year-old played out for me...Laura relates how when the other children were playing, Mathew concentrated on the wheels of a toy. The other mothers thought that that was so cute..."He's going to be an engineer," one said. At my gymboree class with CM1, when he was 18-months old, the other mothers would say that my son "marched to the beat of his own drummer..."

Next follows tales of school, society and acceptance or not. Neighborhood and childhood realities. Issues, problems and resolutions. It is uncanny how every story in this book brought back a flood of memories. It is as if she had joined my family as a specter and was using my life as fodder for a novel.

She then goes on to tell us stories about those "teen" years. Some of Mathew's rebellion and his desire to be a "regular guy." Laura talks about how Mathew dealt with his issues and his desires. She details how the family helped and stayed together to ensure that they above everything else remained a family. A family filled with empathy, compassion and acceptance. It is nice to see at the end of the book, but no way the end of the story, that the entire Shumaker family is in a good place. That everyone is finding their niche in life, including Mathew.

Through countless stories, anecdotes and remembrances, Laura Shumaker brings us into the world of raising an autistic son. She regales us with the issues yes, but what she also does is tell us the solutions. She provides us with an outlet to know the world in which we live and to see ourselves and our lives played out. But most of all I think what Laura leaves us with is a story of hope, courage and above all an amazing amount of love.

I highly recommend this book. Through stories of her own experience you can learn  productive, well thought out ways to solve issues you may face with your child. Solutions, quite frankly that alot of experts do not tell you about. The practical side of parenting an autistic child.  Another truly important reason to buy this book, is to see yourself and your child's story in print. Oh we can always talk a good game about how we are a community and understand what each other is going through but there is always that little question, well does everyone truly experience  xyz in this particular way. Through this book you will find out that the answer is a resounding "yes" and we really are a community and we are not alone.


Until next time,



Elise




Tuesday, January 24, 2012

Don't Give Up

Needed some inspiration...Elmo and Bruno Mars, provided.....



Here's Bruno Mars singing his hit "Just The Way You Are..."




Until next time,


Elise

My Thoughts on the New DSM5: Future Implications


My new post is up at Special Education Adisor:

Much is being written about the new definition of autism spectrum disorders for the DSM5, most of it not positive. I have to admit, I am one of those persons who is not only very skeptical, but also very disheartened by the new criteria. (Read Here and Here) While Special Ed Adviosr has several articles outlining her thoughts concerning the DSM5 and receiving services under the IDEA, (here and here) I have several caveats.

To start with, you have to fall into one of the 13 categories. It truly depends on the state in which you live, as to how flexible their categorical definitions happen to be, not all are as “vague” as the California definition of autism-like characteristics. In fact even today in some states, one of the categories that may be the hardest to qualify for is autism apart from other health impaired. You really need to review your state’s regulations and make sure that your child fits into a particular category. Something also is important. Just because you had a dx in the past also did not guarantee services. There had to be a quantifiable need in place. So in many cases, even if your child fell into one of the 13 categories, but showed no educational issues, they did not qualify under the IDEA.

Honestly one of the reasons I initially felt that the joining of the different levels of autism into one category would benefit everyone on the spectrum is that now, no educator could say “Since your child has aspergers and that doesn’t’ fall under the autism category we do not have to supply them with services.” That was a mantra I had heard over and over again. They don’t service aspergers. The problem then became, since most high functioning students do not have learning disabilities or even speech and language issues, they then did not qualify for a 504 Plan either. I had hoped that by combining the entire different spectrum situations into one definition would have resolved this civil rights issue. Read here.

The DSM4 definition of autism was a boon to parents and children alike, never mind to thousands of adults who could finally understand why they functioned the way they did. It provided a community, a place to go for understanding, joining and support. The autism community understands each other and knows what it means to be autistic. I have said so many times, that when we started this journey into the world of autism, there was no community, there were no websites, there were no chats, and there was no social media. Noone understood what was going on with your child and there was noone there who could help. When you were alone with a child with a disability you were truly all alone.

Community proved the necessary needed support. It helps when people can point you in the right direction, even hold your hand and tell you lets see if we can figure this thing out together…or simply “you can bitch right here. We know what you mean. It doesn’t mean you don’t love your child and it doesn’t mean you are a bad parent or a bad person.” Each community needs a definition. Granted we do not have to accept the DSM5 definition. For we know what autism happens to be, but I worry about those who have yet to join, who may not even think that they belong and have people that will help them. I not only worry for those of us who know who we are and who are child are, but I am so concerned for those who are yet to be…I fear for them, and ours as a matter of fact, and for their right to be understood, respected and included.

The callousness of the psychiatric community to just flippantly take away this ability for human beings to understand themselves is quite frankly the height of hubris. For the lead doctor on the project to claim that he has singlehandedly halted the autism epidemic is Orwellian. You cannot stop a bacterial epidemic by changing the definition of the disease. You cannot stop the autism epidemic by changing the definition of autism. You can no more define autism out of existence, than the Nazis could try to kill disabilities out of existence. We in the autism community know what autism happen to be…too bad the doctors putting together the DSM5 apparently have no clue.

While many of us are facing the probability of having to fight for a new dx or category in order to get our children the services they need to continue to do well in school, there is another very overlooked aspect to the new DSM5. Eventually everyone graduates from 12th grade and needs to go out into the world.

There are SAT, ACT and PSAT accommodations that need to be applied for. There are college and possibly graduate school accommodations that need to be applied for. There are professional licensing test accommodations that need to be applied for. There is a world out there that does not understand invisible disabilities. There are social security disability supports and Medicaid supports that may no longer be available. There is protection under the ADA that may no longer be available. And these are just for those who go on to post-secondary education.

What about those who are not capable of higher education but do not qualify under a disability? What will happen to them? Who will help them? Where will they go? I once read a beautiful story in the New York Times written by a mother of an autistic child. She said her heartbreaks because she worries…who will love her child once she is gone? Well my heartbreaks because who will not only love our children once we are gone, but who will help them if society says they have no reason to have problems or issues, once we are gone?

The world beyond the IDEA is not an easy world for those with autism. But the accommodations that many receive enable them to move beyond the world of menial labor, and dependency. It enables those, like my boys, to use their innate intelligence and produce a future of their choice.

However, if they no longer have a disability or the disability is not considered as life effecting as autism, things will change for them and quickly. Will they get extended time on tests, the ability to have a para, will they get breaks in between tests and will they be allowed alternative location and use of a computer? Will the world more or less understand when they no longer carry the label of autistic but rather simply ADD with maybe some social interactive issues? Will they be seen as intellectually deficient because they need pragmatic speech language instead of someone shaking their head in understanding and saying …”oh autism, that’s why they are so smart but can’t participate in hum-drum-chit-chat*…” Will they be allowed to learn and develop those needed life skills as they continue growing intellectually or will they be labeled “possible threat” because they lack social appropriate perspectives and there is no category they fall under?

Read the rest here 


Until next time,



Elise

Don't forget to check out my post DSM5: Don't Panic think it Through for updates.

Asperger Sadie: Telling Aspergers like it is

I wanted to bring everyone's attention to this terrific blogger named AspergerSadie. You can follow her on twitter @AspergerSadie. Her blog is I Have Asperger's...Can't Live with it, Can't live without it.

This young woman also has a video series up on You Tube that gives us all, in some very short snippets a look into the world of autism. I have always maintained, that one of the most helpful aspects in raising children on the autism spectrum, is the fact that adult aspergeans can relate to us what their world is like.

Here are some of her videos. I highly recommend that you click on the You Tube link in the videos, it will bring up her series.








Until next time,


Elise

Monday, January 23, 2012

Oxygen Mask Project-Taking Care of Yourself

One of the biggest issues we, as parents of special needs children face, is knowing when to pull back and remember to take care of ourselves. I have written about this on many occasions, and on many occasions I have fallen victim to forgetting about myself, as well.

There is a fun new blog called The Oxygen Mask Project which tries to remind parents that they need to take care of themselves. This is their mission in their own words:

To care for others, you have to take care of yourself as well.
Too often, we feel guilty as parents when we take time to do something that is just for us.
But it’s how we can keep giving our best to our children.
Shannon and Alysia started this project for one reason only: to give parents a place to feel supported when they take a moment to catch their breath.


In the event that the cabin loses pressure, pull oxygen mask toward you to start oxygen flow. Put your oxygen mask on as quickly as possible. Help children and others with their masks only after yours is secure.
It’s a matter of survival when we fly.  We need to be able to breathe on our own before we can help our children.
We listen when we’re on a plane.
Why don’t we listen in our daily lives?
It’s time to realize that when parents take care of themselves first, it’s not selfish.
It’s survival.
We started this site to help parents remember that they need to breathe and take a moment to do something special for themselves each day.
We’re not talking spa vacation.  We’re talking sitting down for a meal.  Drinking our coffee when it’s hot.
Going for a walk.  Taking a nap.  Buying a new outfit.
Guilt free.
Join us in making 2012 The Year of the Oxygen Mask.  Read how other parents are making a lifestyle change to make their mental health a priority.  Share with others what you plan to do to help yourself first.
Let’s all take that first deep breath together.

The Oxygen Mask blog
The Facebook Page
Twitter


Meanwhile, they have posted one of my "oldies but goodies" posts called Taking Care of Yourself


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:

Read the rest here.

Take to heart that list and remember you are important and you should find a way to take time for yourself as well...even if it is a ten minute shower.....Yes, I have had those days, where I didn't even have a moment for a shower...and I know everyone reading here can identify with that reality.

Until next time,


Elise

Friday, January 20, 2012

DSM5- Don't Panic Think it Through:UPDATED 1/25/12

Yesterday we read in the New York Times how the DSM5 definition of autism/pdd-nos/aspergers is going to change. The upshot of this is that according to the head of the DSM5 committee the overwhelming majority of those diagnosed on the spectrum would loose their dx. Read HERE.

Let's NOT panic. Yes your initial reaction is one of OMG, now what. It has been hard enough getting the dx for our children (or even ourselves) over the years never mind the necessary supports and services they need to function. But now the medical community has decided that there is nothing really wrong with our children.

Let's think this through as an advocacy group. It is time for those who claim to represent the autism community:

Autism Speaks, ASAN, National Autism Foundation, GRASP, ASPEN, Asperger's Association of New England, Autism Science Foundation, Aspergers Syndrome and HFA Association, COPPA, icare4autism, MAAP, NAMI, PACER, Autism Society, Autism Women's Network to name but a few... (I have links for them on my Helpful Websites tab)

to come forward and put their two cents into the comment period. Only they have the financial resources and individual representatives with medical backgrounds to do this and be taken seriously.

Honestly, I am not certain that outraged letters from parents alone will have any effect. This is not an emotional issue for medical practice but a scientific one. So it has to be answered by members of the scientific and medical community or those with a chemistry or biology background. The response needs to be clear, concise and on point, addressing every misdirection, scientific malfeasance and "psychiatric" misstep.

I even contemplated what I would write...Beyond my own personal experience over the last twenty years, I have nothing but anecdotal evidence to offer and that is not really good enough no matter what parents think.

Just as an aside too: I actually read a very intersting comment at the NYT which asked: why since we know that autism is biologically based, is it still categorized as a "mental illness" instead of a "neurological impairment." The psychiatric causes of autism have been completely discounted and acknowledged as ill-founded.  Why does the psychiatric community have any sway in the matter over and above neurology, biology and developmental pediatric experts? Just because someone has a medical degree does not make them an expert in every area of medicine, no more than a lawyer can tell you about every aspect of law. (Let me tell you too, if you have a lawyer who tells you he can help you with every aspect of your legal needs, you need a new lawyer.)

Meanwhile, HERE is the actual DSM5 from the American Psychiatric Association.  Read through it. Learn what they are saying. No I am not telling everyone that our concerns or fears are not real. They are, but if you are going to discuss something so important go straight to the source of the controversy. Don't rely simply on someone else's take on the subject.

Here is a list of articles that have been tweeted about the subject. I will update it as I find new articles. Additionally, if anyone finds articles or thoughtful posts, not listed here, please add to them in the comments section below:

Bloomberg
Panic about DSM5 Changes from the Autcast.com
Will New Diagnosis Criteria End the "Autism Epidemic" from Care2
DSM5- Living Document or Dead on Arrival
Two Fallacies Invalidate the DSM5Trials
Don't Expect Much
DSM-5 Under Attack
Therapists revolt against psychiatry's bible 
A Giant Leap Backwards 
Friendship Circle has a huge list of posts that may interest everyone (this post is included)
A Video from Nancy Grace  Update 1/25/12
DSM5Autism Criteria: Clarifying Impact, Taking Acting 
                     from Thinking Person's Guide to Autism 1/25/12

Remember part of "Embracing your Inner Bitch" is using your smarts, strength, thoughtfulness and abilities in a calm fruitful manner. I personally had my sarcastic, obnoxious, anxiety driven meltdown yesterday. Take a breath, don't panic, now lets begin....

UPDATE: I have found some petitions that are already on line against the changes in the DSM5:

GRASP call to action read HERE.  
Call 703-907-7300 to voice your concerns directly to the DSM committee.

From change.org there is a petition objecting to the change in definition of autism/asperger/pdd-nos. The petitioners ask that the DSM4 definitions remain. Begun by Aspie Side of Life 
" Under the proposed changes many will lose necessary services. The argument for doing this is that there are not systems in place to support the increased need of people that meet the current diagnosis. The individuals that will no longer qualify for services will still need the services but will not qualify to recieve them.  Due to the lack of services this will prevent them from living up to their full potential.  Please sign this position to show that you do not agree with these changes."

From ipetition  against changing the ASD Criteria.
"This petition is against the proposed changes to the DSM-V, which would eliminate high functioning ASD patients (PDD-NOS, Asperger's and Childhood Disintegrative Disorder) from the Autism Spectrum. According to Fred Volkmar, MD, the researcher who worked on the data leading to this change, while some high functioning autistic individuals would be put under the umbrella of classic autism, more than 3/4 of high-functioning autistics would no longer be considered autistic, placing their access to social and school services in jeopardy."

From ipetition, now closed, but with over 10,000 signatures from psychology professionals and supported by dozens of psychology professional associations. The interesting point here, is that they are not just objecting to the "autism" controversy, they a r displeased with the entire process being employed to change the DSM4 to 5 as a whole. They object to the methodology employed and how closed is the committee process. That says something very important about what is happening with the DSM and it is not good. Here is the petition:

To the DSM-5 Task Force and the American Psychiatric Association:
As you are aware, the DSM is a central component of the research, education, and practice of most licensed psychologists in the United States. Psychologists are not only consumers and utilizers of the manual, but we are also producers of seminal research on DSM-defined disorder categories and their empirical correlates. Practicing psychologists in both private and public service utilize the DSM to conceptualize, communicate, and support their clinical work.
For these reasons, we believe that the development and revision of DSM diagnoses should include the contribution of psychologists, not only as select individuals on a committee, but as a professional community. We have therefore decided to offer the below response to DSM-5 development. This document was composed in recognition of, and with sensitivity to, the longstanding and congenial relationship between American psychologists and our psychiatrist colleagues.



Until next time,



Elise

Below please find a copy of the letter that Dr. Sarita Freedman has sent to the DSM5 committee. You may recall that I am a big fan of Dr. Freedman and her help and support for persons on the autism spectrum is well known. She has agreed to let me share it with my readers:


To Whom It May Concern:
I am a licensed psychologist in California, with a specialty in autism spectrum disorders.  I work with the “high functioning” population and am very concerned that this population of individuals will be excluded from much-needed services and supports as a result of the new criteria.  What continually confuses me is the bias (in society?) to only serve those whose disabilities are most evident.  I see this happening here in California with the blanket denial of services by many Regional Centers to individuals with a diagnosis of PDD-NOS or Asperger’s Disorder.  Are services not to be tied to the individual’s need, rather than their label?  While I realize that financial constraints play a role here and that monies have to be allocated to those in most need, it is precisely those individuals with the more “invisible” disabilities who can likely make an impact on society by becoming working, tax-paying citizens.  However, without receiving initial supports (i.e., job coaching, job training, social and interview skills, etc.), many of those individuals will undoubtedly become dependent on public-funded services, working at jobs that are way below their capability, being unable to live on their own, and subsequently having the potential to be homeless after their parents die, all because they won’t have the skills to thrive in the work place.  With the rate increases we’re seeing, I don’t think this is a risk society can take. 

I’m confident that you are taking the time to consider other options.  While the system isn’t perfect even today, at least some individuals with potential and need can have access to much-needed services.  It’s unfortunate that being tied to a label is what opens doors to services, but I think we’re a long way from the alternative just yet.  Thank you so much for your time, consideration, and the intense efforts you are making to improve our DSM.   


Sincerely,

Sarita Freedman, PhD
Licensed Psychologist
Adults & Children, Developmental Disabilities
Author, Developing College Skills in Students with Autism & Asperger’s Syndrome
26540 Agoura Road, Ste. 100
Calabasas, CA 91302
(818) 999-9330



1/24/12 UPDATE: HuffingtonPost has an article by Allen Frances, one of the purveyors of the DSM5 criteria. Read HERE if you think your stomach can handle it. Here is the comment I tried to leave:

This article is self-righteous and self-serving. The notion that somehow by changing the definition of autism you will stop the autism (over diagnosis) epidemic is hubris at its greatest and obnoxious at the least. You cannot change the fact that someone is autistic because you decide to change the definition.The idea that it is all about services and understanding and civil rights...well yes it is, too bad.

You cannot receive services for your child without a diagnosis of one of 13 categories under the iDEA. So many children do not fall into any of the categories but they definitely fall under autism and they without a doubt need alot of help. No teachers do not "teach" to the disability but to the issue, yet you need to have a legally defined issue to be even given support and services.

Community is a huge thing when you are all alone and trying to figure out your world. Those with autistic brains, no matter how functioning are different. They view the world differently and they act differently. It is important to know that you are not alone and that there is a community out there for you to turn to for help. As  a parent, I know what it is to be all alone, without community, raising autistic children. I know what it is to be all alone until everyone could figure out what was wrong. How dare these individuals think they can remove from us our support networks and our camaraderie and tell us we are mistaken as to who we are.

These services by the way do not end when the child finishes 12th grade either. An adult with an autism spectrum disorder may need support their entire lives no matter how high functioning they happen to be. Those that are not covered by this new DSM definition what about them? How will they get the necessary skills to be functional adults? How will they survive in a world that does not consider them disabled, or disabled enough? You can't be protected by the ADA if you are not considered disabled or disabled enough even if you cannot function in society. How will they learn life skills, social skills, job skills? What if they cannot hold a job but according to he world they do not have a disability, even though we know they do? What about disability benefits, medicaid that could have helped them but they no longer qualify? Invisible disabilities are terribly misunderstood in this nation and the world at large, now the DSM5 committee has just made it alot worse.

Those out there who think its all about money. You can rest assured that no matter how much you may get from state or fed authorities you  still go broke, face bankruptcy, and worry where the next dollar for the next doctor bill is coming from. We have OT, PT, speech, ABA, social skills, life skills, job skills, neurologists, pediatricians, psychiatrists, psychologists, nutritionists, endocrinologists this all before we get to the typical things a child should have in their growing years....like the odd piano lesson.. and as they grow into adults we even pay for paras on our own and the need for therapy doesn't stop becasue a child reaches 18 either. Add to all this the cost of medications, if you can get a medical plan. Even the copays can break the average family. Insurance companies don't really want to pay for this for everyone do they? Now with the new definition they wont have to for the majority of persons will they?

DO NOT forget that WE are also tax paying citizens, who follow the laws, the rules and many of us serve our nation in the armed forces. Our children, and we,  are as entitled to help and respect form society as anyone else.

What this committee has done is insulting to those of us living with autism either as an autistic individual or raising autistic children or quite frankly under both scenarios. WE know what autism happens to be. WE know how it affects our lives and the lives of our children. WE are the ones that should have been asked. WE are not lab rats and neither are our children.

How dare those on the DSM5 committee think they know what is better for us and who we happen to be. WE will define ourselves. WE will create our own future and WE will not be marginalized by those who chose to infantilize and minimize who we happen to be, nor will we allow these individuals to take away the civil rights we have fought for for so long for our children and ourselves.

@RaisingASDKids


Here is the one they let me leave:


Self-righteous and self-servi­ng. The notion that somehow by changing the definition of autism you will stop the autism (over diagnosis) epidemic is hubris at its greatest and obnoxious at the least. You cannot change the fact that someone is autistic because you decide to change the definition­.The idea that it is all about services,u­nderstandi­ng and civil rights... too bad.

Those out there who think its all about money. You can rest assured that no matter how much you may get from state or fed authoritie­s you still go broke, face bankruptcy­, and worry where the next dollar for the next doctor bill is coming from. We have OT, PT, speech, ABA, social skills, life skills, job skills, neurologis­ts, pediatrici­ans, psychiatri­sts, psychologi­sts, nutritioni­sts, endocrinol­ogists this all before we get to the typical things a child should have in their growing years.... the need for therapy doesn't stop because a child reaches 18 either. Add to all this the cost of medication­s, if you can get a medical plan. Even the copays can break the average family.

WE are also tax paying loyal citizens and many of us serve our nation in the armed forces. Our children, and we, are as entitled to help and respect from society as anyone else.

WE will define ourselves. WE will not be marginaliz­ed nor will we allow the DSM5 to take away the civil rights we have fought for for so long for our children and ourselves.

@RaisingAS­DKids



Thursday, January 19, 2012

I Have Resigned from The Coffee Klatch

I wish to tell everyone that effective immediately I have resigned from The Coffee Klatch and Special Needs Talk Radio. However, I want everyone who follows me to rest assure that I have not left the internet or twitter. I will continue to help those who ask for help in dealing with practical advice for their children, as well as giving great advice on handbags and dance music. (If I do say so myself.)

Don't forget even though I won't be chatting with you in any official capacity through tck, I am always up for a chat and a joke in my regular timeline. You can catch me @RaisingASDKids.

See you tomorrow.

Until next time,


Elise

Will Your Child Be Autistic Tomorrow?

The New York Times ran an article about the proposed DSM change for the defintion of autism. Here is a little tidbit I found intersting:

The likelihood of being left out under the new definition depended on the original diagnosis: About a quarter of those identified with classic autism in 1993 would not be so identified under the proposed criteria; about three quarters of those with Asperger’s would not qualify; and 85 percent of those with P.D.D.-N.O.S. would not. 

Read the entire article here.

So the reality is that with this change of definition the vast majority of our children would no longer be considered autistic. Interesting, absurd and quite frankly frightening...Even more so, completely devoid of any sense of morality.

Yes I left a comment. So here it is:

The psychiatric community plays with people's lives, support and future without even a second thought. This is nothing more than about the ego of a handful of persons who have no regard for the destruction they will cause. To actually say that the overwhelming majority of persons diagnosed with some form of autism in the last two decades will no longer be considered autistic is Orwellian. How nice that the psychiatric community can somehow cure someone of autism overnight by changing the definition.

Goodness if we parents of autistic children knew that was the way to do it, we would have asked for this definition change decades ago. We didn't need to go broke with therapists, doctors, neurologists and specialized programs. We could have just asked the psychiatric community to wave their little wands....Abracadabra presto chango the definitiono and your children or you are now cured...So glad to know that that is really all it took...

Unbelievable... the psychiatric community changes the definition and our children have no more problems....who knew....

These people are not only not professional they are completely absurd.

It is linked HERE. BTW I wrote it under my political blogging pen-name not my autism blogging name.

******
Let them know what you think too.

Until next time,


Elise


Three Deadliest Words...It's a Girl





*****

Meanwhile a terrific book came out last summer on the issue of gendercide. Here is the review from the Wall Street Journal by Jonathan Last.....

The War Against Girls


Buy Here


Mara Hvistendahl is worried about girls. Not in any political, moral or cultural sense but as an existential matter. She is right to be. In China, India and numerous other countries (both developing and developed), there are many more men than women, the result of systematic campaigns against baby girls. In "Unnatural Selection," Ms. Hvistendahl reports on this gender imbalance: what it is, how it came to be and what it means for the future.
In nature, 105 boys are born for every 100 girls. This ratio is biologically ironclad. Between 104 and 106 is the normal range, and that's as far as the natural window goes. Any other number is the result of unnatural events.
Yet today in India there are 112 boys born for every 100 girls. In China, the number is 121—though plenty of Chinese towns are over the 150 mark. China's and India's populations are mammoth enough that their outlying sex ratios have skewed the global average to a biologically impossible 107. But the imbalance is not only in Asia. Azerbaijan stands at 115, Georgia at 118 and Armenia at 120.
What is causing the skewed ratio: abortion. If the male number in the sex ratio is above 106, it means that couples are having abortions when they find out the mother is carrying a girl. By Ms. Hvistendahl's counting, there have been so many sex-selective abortions in the past three decades that 163 million girls, who by biological averages should have been born, are missing from the world. Moral horror aside, this is likely to be of very large consequence. Read the rest HERE.


Until next time,

Very glad I was raised by two very female-rights oriented Reagan-republican parents,


Elise