Get the Book... Autism Life Skills

I had mentioned a while back that I was reading Autism Life Skills by Chantal Sicile-Kira. I have finished the book and I highly recommend it.

I was happy to see a few adults with Autism that I know from the Autism Hub being interviewed. The book is one of the more positive and helpful books I have read on Autism in a long time. I am especially pleased that adults with Autism share their insights throughout the book.

Sensory overload is a huge challenge for Maizie. Much of her aggressive behavior is a result of sensory overload. This book explains that in many situations the child with Autism cannot control it. I knew this but was glad to see it explained in this book.

It was also a relief to read a book that did not waste my time discussing potential causes, cures and ongoing debates.

I highly encourage you to get a hold of this book. I am going to buy a copy. I want a few people close to me to read it.

Flo and Kay...Autistic Savants, Thoughts on Caregiving

Yesterday I watched a program I recorded called Flo & Kay: Twin Savants. Possibly you have seen it as well? I found myself moved throughout the film.

Flo and Kay Lyman are both Autistic and very close to one another. Very close. They have an interesting obsession with Dick Clark and are friends with him. Dick Clark met with the twins and sends them cards. I now have a very special place in my heart for Dick Clark. He could have blown them off but he took the time to communicate with two of his biggest fans on an ongoing basis.It was especially interesting for me to watch this since I was asked this question by an acquaintance a few weeks ago. He asked, "Maizie is autistic? What is her 'special skill'?" I sat there...staring at the guy in disbelief. He was relatively young so I would have thought he understood a bit more about Autism. Was I understanding him correctly? Was he assuming all Autistic people were savants? My pause was long and uncomfortable enough that he added, "You know....like counting cards or something." Argh. Rainman.

I took that opportunity to talk a bit about Autism and how incredible Maizie is. I have to believe that he was asking me the question with kind intentions. If not, I would never leave the house considering how often I get asked bizarre questions in regards to my daughter, Autism and even adoption (I will cover a frequently asked question in regards to adoption in another post soon).

The show Flo & Kay talks about the many misconceptions in regards to Autism and Savant abilities. It says that ten percent of people with Autism have savant characteristics. That is quite low and yet many people think that all Autistics are like the character in Rainman. I was very pleased to hear the show go into detail on the statistics and touch a bit on how Autism varies from person to person.

The program also discussed the stress on caregivers and the difficulties of finding ongoing care when the main caregiver passes on. A subject I don't like to think about.

Flo and Kay were raised by their mother. The mother felt so left out of her community, so alone and without help that she tried taking her life and the life of the twins. It was the twins older, neurotypical sister that stopped her when she found them all with their heads in the gas oven. Needless to say I was aghast hearing this. And yet, we still hear stories like this or much worse to this day. The twins said the mother promised she would never hurt them again after the older sister saved them.

Obviously I was moved. I could relate to their mother and felt such sadness for her. I had more support than she had and I still felt desperate...alone and beyond exhausted. Back in the 50's when the twins were little the supports were non existent. Children with disabilities were often hidden and looked at shamefully by others. I know when my mom was caring for my sister who had a stroke at six the supports were terrible. That was in the seventies. We have come a long long way. And yet, there is still a long way to go. A very long way.

We need to look out for caregivers during these difficult times and support them in any way we can. As caregivers, we need to ask others for help and be very specific with our requests. Friends and family can not read our minds. I would often try and hide just how difficult life was because I wanted to be the perfect mom. I still struggle with this. That got me nowhere but more tired and more alone. Sometimes it is difficult to ask for help.

I am lucky to have my sister Melissa. She was the one who brought my relentless depression to my attention, helped me make my appointment, encouraged me to try medication and went with me so she could communicate my situation. I was beyond words at that point. All I did was cry at that meeting. Sometimes we can't see a way out until someone guides us along.

I hope Flo & Kay's mother was able to see what charming women her daughters are. I hope that she died knowing she did a very good job raising the twins. Mothers often get the blame for everything and very little recognition for the hard work they are putting forth to care for their children. My life has been looking up over that last few years. I read many blogs where the families are in the early years of finding a diagnosis and caring for an Autistic child. Some are searching for a cure and some are moving on to the place of acceptance and pure joy for who their child is. It is a process and it takes time.

I do not believe there is a cure for Autism and I don't search for one anymore. I need my energy for living life and enjoying my time with Maizie, Joe and my friends. Looking back at my earlier years as a mom I can understand my exhaustion, frustration and fear but I do wish I would have spent less time worrying, fretting over the latest cause or potential cure. Instead, I would have spent more time just 'being' with Maizie, enjoying everything about her without trying to force her to change. It is easy to say that now. At the time I felt like I was living on an island, swimming against a sea of negativity...trying to reach my daughter. If I had been blogging back then and had the support network I have now...I think that would have helped me see more clearly.

Sometimes when I am trying to help Maizie develop skills and she is struggling with health issues I see life through a very thick filter of illness, disability and desperation. Every little thing in my vision becomes clouded, distorted and life feels desperate and fearful. It is hard to remove that filter from my eyes. And yet, it is necessary to remove it in order to let Maizie be Maizie and me be me. I am still working hard at peeling back that damn filter. The light is fantastic though when you let it through. Everything is dazlious!

Flo & Kay inspired me to write this post as did the many people who love them. Flo & Kay are truly dazlious!

Asperger Syndrome & Alcohol...Drinking to Cope? Autism Life Skills.

Yesterday I went to the library to pick up some books for Maizie and instead was surprised to find a couple of interesting books discussing Autism.

On the 'new books' shelf there were two books that caught my attention. The first, 'Autism Life Skills' From Communication and Safety to Self-Esteem and More 10 Essential Abilities Every Child Needs and Deserves to Learn by Chantal Sicile-Kira. I was taken by the title immediately, thinking the words 'Deserves to Learn' were an interesting choice. I most certainly do believe Autistic children have every right to learn. I found the words shocking because I would like to think people don't need to be told that children who are Autistic deserve to learn. Hopefully, that is just a given. And yet, considering what we have been through with the school systems inability to teach my daughter who is in every way teachable...well, it is naive of me to think that everyone believes that Autistic children and adults deserve to learn. The truth is some parents and professionals out there believe that Autistic children don't have the same rights to an education that "normal" children do.

Possibly, I am misreading that title but these were the thoughts that initially struck me. The foreword is written by Temple Grandin, Ph.D. and I love her writing. I am most interested in the chapter on independence because Maizie has shown an increased interest in being more independent despite her safety and communication skills not being ready for it. As parents we are talking over some ideas to help her gain the independence she is requesting.

The second book I checked out surprised me. It is titled Asperger Syndrome and Alcohol...Drinking to Cope? by Matthew Tinsley and Sarah Hendrckx. This book's foreword is also by Temple Grandin. The writers are hoping to explain the link between alcohol abuse and Aspergers. Matthew Tinsley the author was an alcoholic and writes about how his diagnosis of Aspergers helped him recover. Sarah Hendrickx's partner Keith is self diagnosed Aspergers.

I like that the book is written by two people who have first hand experience being Aspergers or living with someone who is. Alcohol being used as a way to cope with Aspergers is something I have naively never considered. Looking back to my high school days I can see a few friends who may have fit the diagnosis of Aspergers who were routinely turning to alcohol to make it through high school and all of the social challenges that go with it. Of course I have no idea if Aspergers would account for the alochol use I witnessed but it would answer a few questions. I do believe that without a proper diagnosis most individuals will turn to something to cope. That seems to be true for many other challenges such as major depression or eating disorders.

Hopefully reading the book will shed some light on this topic which is very new to my thinking about Aspergers.

According to Dennis Leary, I am an inattentive mother and my child is stupid.

I read about Dennis Leary and his ignorant comment about parents of Autistic children at Autism Vox and also an interesting post in regards to this comment at A Life Less Ordinary by Emily.

Here is Dennis's comment found in his new book...brace yourself.

"There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can’t compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don’t give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He’s just stupid. Or lazy. Or both."

Apparently he thinks this is a new, creative or funny idea? Talk of the 'refrigerator mother' in regards to Autism has been around forever. Are people so hard up for comedic writing for books and television that they have to turn on parents who are working hard to raise children who are Autistic?

I suppose it is nothing out of the ordinary. I remember my family putting up with cruel comments or ideas in regards to my sister and her disability when I was a child. The comment above is without a doubt very cruel. It is not funny in context or out of context.

Apparently ignorance continues to be profitable. The rights of children and adults with Autism and other disabilties are always being belittled. Unfortunately, some people have a wide audience in which to share their backwards and unintelligent ideas on subjects they obviously know nothing about.

Peta's Billboard is Removed!

Bev from Asperger Square 8 tweaked the Peta ad a tad. I must say I like it way better!

Ari writes in regards to Peta's campaign...

Hello everyone,

I am happy to announce that PETA's recent, "Got Autism?" billboard has been removed by the advertising company hosting it. The billboard misinformed the public about the autism spectrum by falsely implying that milk consumption was the cause of autism. Such advertising contributes to a state of public hysteria about the autism spectrum, fueling the fear and resulting prejudice that marginalizes us from society at large. It is unacceptable for autistic people, our families and supporters to be used as instruments in PETA's political agenda or that of any other unscrupulous interest group.

Our community came together to communicate the need for a swift withdrawal of this ill-informed piece of advertising, and I'm pleased to say that were able to achieve a swift result. That we were able to accomplish this so quickly and effectively speaks well for the autistic community and the cross-disability rights movement. Thank you all for your support. If you'd still like to indicate to PETA the need to avoid exploiting the autistic community in its future advertising, you can write to them at info@peta.org as well as call them at 757-622-7382 and dial 0. You can also sign our petition on this topic, further indicating to PETA and the world that it does not pay to try to attack and exploit the autistic and cross-disability communities.

Incidents like this show the need for a strong and activist autistic self-advocacy movement, working closely with the broader disability rights community. By uniting on issues like this one, we can work to address the persistent biases that pervades the public discourse about autism in specific and disability in general. As we speak, the blind community is uniting against false and offensive depictions of their community in the new movie, "Blindness". Over the last few months, disability rights activists from all parts of the community came together to fight against outdated and damaging portrayals of people with intellectual disabilities in the movie, "Tropic Thunder". Less than a year ago, the disability community united behind our successful effort to stop the NYU Child Study Center's "Ransom Notes" ad campaign, which portrayed children with disabilities as kidnap victims.

Like any other community, we have the right to be treated with respect, in media, in service-delivery and in all aspects of society. While responses to offensive depictions of disability in popular culture are not the only battle in the broader struggle for equity, inclusion, quality of life and opportunity for all people with disabilities, this issue must remain an important priority. Culture helps to shape the reality we live in. By challenging the exploitative and offensive public discourse on disability we find today, we can advance a broader agenda for disability rights. The disability community is on the march and we will not be stopped. Thank you once again for your effective action on this issue. I look forward to working with all of you once again in the future. Remember, "Nothing About Us, Without Us!"

Regards,
Ari Ne'emanPresident
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700Washington, DC 20036
http://www.autisticadvocacy.org/

Got Autism? Peta's Misleading and Harmful Ad Campaign

Ari Ne'eman, President of The Autistic Self Advocacy Network writes...

"Recently, the organization People for the Ethical Treatment of Animals (PETA) launched a new ad campaign entitled, "Got Autism?", misleadingly implying that the consumption of milk is associated with the cause of the autism spectrum. PETA is misinforming the public about autism and thus joining a long line of unscrupulous groups that have sought to try and spread fear about autism as a means of pushing their particular agendas.

Attempts such as these treat individuals with disabilities as pawns in the efforts of other constituencies. By refusing to acknowledge the right of the autistic community to be referred to with respect instead of as the focus of public hysteria, PETA contributes to a state of affairs which marginalizes the disability community. People with disabilities, our families and our supporters deserve better than the exploitation and fear-mongering that comes about when disability is used as a means of scaring the general populace. For millions across the globe, the answer to PETA's "Got Autism?" question is an unequivocal yes. That should not spell the end of our lives or prevent us from being fully included throughout society. By exploiting us, PETA becomes a culprit in the social forces that marginalize people with disabilities and lead to the discrimination and prejudice that truly disable us.

Let PETA know how you feel about its choice to exploit autistic people by writing to them at info@peta.org or call them at 757-622-7382 and dial 0. In addition, we encourage you to express your support for these ads' swift withdrawal by signing this online petition."

Please take the time to sign this online petition. Ads like this do more damage than we can measure. If anyone is wondering Maizie never drank milk. She does not like it. As an infant she was on milk free formula.

The Kirton Family, My Thoughts on Autism x 6

Okay. So did anyone watch Autism x6? A show on Discovery Health about Amazing Families. We did. I have seen the Kirton family they pictured on other interviews before. They have their own blog Autism Bites (not liking the title any) and foundation. Hopefully some of the home renovations from this foundation would go towards their own home. I know these parents love their children very much and yet I found much of what was going on very disturbing.It may seem odd to care so much but when people watch these shows they will think that this is what life is like with all Autistic children. Even worse, they will think that some of the tactics used within this household are acceptable. This show was a giant step backwards in the advocating for special needs children.

Here is a bullet point list of what I found disturbing.
*In the interviews I saw and the show the children never have bedding on their beds. The reason being that they have accidents or tear the bedding off. Why not as sit the children in learning to keep the bedding on? Buy clips or sheets that wrap totally around the mattress to protect it and keep the bedding in tact. It looked terrible and can not be comfortable.

*The children are allowed to tear at the walls, removing it little by little. One little girl in particular was said to do this as she layed in bed. The wall was torn down to the brown board. Is it too hard to redirect an autistic child so that they have something else to rip and tear? Something appropriate could be used. If a child is being allowed to destroy a wall that child is not being watched carefully. The child may require sleeping in the parents bedroom until the behavior can be stopped.

*A little boy was shown belted onto a kitchen chair as the dad cut his hair. The dad explained that he would be squirming all over the chair if they did not belt him in. There are more appropriate ways to do this. A booster seat with a built in belt would look a lot better and would certainly be more comfortable/safer than the dad's belt. This one really concerned me. We all advocate and work very hard for our children never to be held down or tied down and then they show this as being a great technique. It made me sick.

*The father at one point made a comment about working hard to make her daughter "more human". Ummm.....need I say more as to why this is inappropriate language when discussing Autism?

*The parents have a large piece of wood that closes off the kitchen to the children. Once again, is this a farm? Why not use one of the many baby gates that can be purchased inexpensively to restrict this area? When I saw the wooden divider that was as tall as the parents I was shocked. Not only is it unsafe because a child and adult can not even see through it but it looks like they are caring for farm animals not children. If one thinks I am focusing on what something "looks like" well, yes I am! It is very important not to treat people like they are animals no matter what their physical or mental challenges are.

These are just a few of the concerns I had in regards to this program. The family is looked up to as an example of how to care for Autistic children. I am sure the family was chosen due to the large family size and that all of their children are Autistic. The deplorable conditions in the house also adds to the sensationalism of the show.

The family is being studied. I do hope that includes complete genetic studies on the parents and children. This family could be a huge help in that area. It would seem to make sense that there is a huge genetic possibility going in within this family. Unfortunately, I doubt that is part of the study.

My final thought in regards to this show will upset some people. I don't mean for it to do so. Obviously, this family is overwhelmed. They have their hands full. All six of their children are Autistic and of varying degrees. Why do people have more children than they can afford to take care of? Why do they have more children than they have the energy for? Raising a child with Autism is very expensive. Raising six children with Autism would be beyond expensive. It is no wonder the family struggles to afford proper tools in the home to assist with the care and direction of these children. They mention in the link above that they have no space in their 1, 100 square foot (3 bedrooms, 1 bath and no basement) home for these six children. Why would one not consider the fact of not having enough space for six children before having six children?

It is beyond my understanding when so many children in this world go without homes and care that people give birth to so many children and are unable to care for them properly. Oh, I so know I will upset people with that comment and I am sorry. But, it just makes sense to me to limit the amount of children we have so that we can care for each one in the best way possible.

The Kirton family has their hands full. I am sure the blessings are huge and the challenges as well. I hope that their family begins to focus more on the blessings within their family and sharing that on their blog.

Thoughts on Labeling

When Maizie was a baby and we knew she was not feeling well I remember thinking, "If we just knew what it was. A name. If we had the name of it everything will fall into place. There will be answers. There will be things we can do, things to change, ways to make everything better."

Once we had a "label" I always felt hopeful. I knew that information was power and with it I felt powerful. Over time the first label was not fitting, and then the second, the third, the fourth, etc.

With each label I read books, I studied, I taught others, I interviewed doctors and professionals, I looked for the best help we could find.

Each time...nothing changed. What was I expecting to change? Did I want Maizie to be "normal"? Sure we had medications to try, therapies and behavioral strategies. What exactly was it we were looking for? We were searching for answers to help Maizie feel better. That much I knew for sure. I wanted her to be able to play, to speak, to answer questions, to laugh and run and play. Making it through a day without being in pain was certainly something I wanted for her. I wanted her to have a childhood like I had.

Whatever label we had did grant us a certain power of sorts. It led us to a certain doctor who would in turn give us ideas or medications to help Maizie. Some of the medications helped and some did not. At times there were the doctors who knew nothing, who caused more trauma and damage than I could have foreseen.

All of this I never wanted to put Maizie through. I never wanted to put Joe and me through it. But, it was that way. I can't see it going any differently. The searching, the sleepless nights, watching Maizie in pain physically and emotionally for hours...for days. How can a parent watch that and not search? It is impossible.

And yet. When it gets right down to it...Maizie is just Maizie. She can not be categorized. One can not say, "See! She is just like this child here or that one there. Do what we did for this child and it will help her exactly the same!" Like everyone else in this world Maizie is her own person despite her diagnosis. What works for one child or adult may not work for another.

Maizie's medications don't change who she is. They are not some miracle potion that make her find her words, stop her anxiety, insomnia, migraines and inability to withstand certain noises or situations go away. Her medications are a tool. A tool that must be researched, reexamined and thoroughly evaluated on an ongoing basis.

Maizie is not her medication. She is simply Maizie. A child who is simply that. A child.

I continue to question the labels we use. She needed a label in order to get schooling where she is taught using alternative methods. Labels that determine the correct medications to treat her pain are very important. A label was necessary for her to get proper care in the hospital when the nurses insisted she could withstand having a roommate when it was beyond clear that she could not. I could go on and on. Our lives revolve around these labels. I have fought for these labels and I fight for others to see beyond them.

We rely on labels to move forward. And yet every day I am with Maizie it becomes more clear to me that yes, we rely on these words, these categorizations for help...but she is not at all what they define. Maizie is Maizie. My daughter. A child.

We are a world full of people wanting to put everyone else in a category, a slot, a box. People say, "Oh, if we can just get this one part of this child under control....if we can just figure out what makes this one tick like that when I want so badly for her to tick like this...why can't she be more like this or like that? Maybe if we call it that or this we can make it stop. Maybe we can change her to be more like that child or more like me?"

A label...is a label....is a label. My child has a whole list of her intended labels floating around on charts, graphs, medication bottles and IEP's.

The world wants to squeeze her into a box. Make her fit in. Push her this way and that. I just want her to be a kid. And yet, there they are...the labels. Our society is obsessed with them. I certainly have been as well.Maizie is big into the classification of flowers. She carries a book with her wherever we go. If we cannot find a particular weed or flower in the book she makes me search endlessly for it online. She says, "Keep looking mom. Don't give up. I know you can find it. This flower has to match something."

I took these photos as Maizie was diligently trying to classify a dead Black-Eyed Susan she had picked for me. You can see it all wilted in the background. Once she found it she said, "Yes! It fits in right here. See....this flower is just like that one. It has a match. Did you know that mom?"

Immediately when she said that I was struck with how a flower can be categorized, drawn and labeled. It has a place where it fits, where it grows and it needs a certain amount of water and sun. The list seems so easy. The labels so fitting.

This is not so for my Maizie. Her labels don't define her. They say little about who she is. Bits and pieces may seem fitting.

Finally, I don't seek out labels anymore and I accept that current labels say very little about who she is.

New labels change nothing.
Josephine Lawrence, Let Us Consider One Another (1945)

Kristina Chew on Good Morning America

This video was released a few weeks ago. It is important so I am sharing it here. Many of you read Kristina Chew's blog Autism Vox. In the video Kristina is interviewed by Good Morning America. She discusses her positive outlook on Autism in regards to her son Charlie. Please take a few minutes to watch this clip.

I share the viewpoint in that we are not searching for a cure for Autism. We are however working hard to help her develop skills and make progress with communication and self care skills. Most importantly, we are letting her be Maizie.

In regards to the final comment on the piece. My outlook is not a way to handle heartbreak.

Our daughter is Autistic but Autism does not define her.

Controversial New Movement: Autistic & Proud

I love to read the blog Autism Vox by Kristina Chew. Kristina keeps us up to date on the latest news in Autism. I also enjoy reading about her son Charlie, who is Autistic. Today Kristina was interviewed along with Ari Ne'eman, president of the Autistic Self-Advocacy Network(ASAN) about Neurodiversity.

I do believe this is the first big news program I have seen that has shared "the other outlook" in regards to what it means to be Autistic.

Please take a few moments and watch the clip that aired this morning on ABC News. It is titled Controversial New Movement: Autistic and Proud.

Autism, Special Needs and What the Story of Alex Barton Reminds Us to Do

The story of Wendy Portillo and her five year old Autistic student has been all over the blogs. If you have not heard this story yet please read the article linked above. Wendy made a very very poor decision to have her class humiliate an Autistic student by having each student in the class say what they did not like about the boy. Then, she had the students vote to have the child removed from the class.

It is indeed despicable. And yet, to me it is not surprising. The only thing in this story that surprises me is that the teacher managed to do something where she was caught. A side note here is that we must remember that an investigation will be done. Even though it seems hard to believe that there are two sides to this...there are always two sides.

I am in no way saying that what Wendy did was acceptable. And yet, I have a feeling there is more to this story. Here is what I know from our experiences with Maizie in public and private schooling and from being an advocate for children with varying disabilities in many different schooling situations.

1. Teachers are overworked. The red tape teachers have to go through in order to advocate or not advocate for a special needs child is unbelievable. That being said, the advocating parents have to do in order to get services for their child is mind boggling as well. Mix them both together and it can go all kinds of bad.

2. Many times there are conflicts going on between parents and teachers that cause a great deal of animosity, anger and bullying that can go both ways. Things get blown up and stories start and it is hard to know what is true and what is not.

3. When things go wrong between teachers, parents and school...the one that ends up paying for this lack of communication and lack of conflict resolution is the child. There are teachers that will take it out on the child despite claiming that they want to help the child. In the same way there are parents who make it very difficult for teachers to help a child by not being flexible with programs or refusing to accept that a child may not need said service, aide, etc.

4. Mainstreaming is not always the answer for every child. Mainstreaming is not the answer for every teacher. Many children do not handle a mainstreaming classroom well. The class may be too large, too noisy and lack one to one services for the child with special needs. Mainstreaming is not always going to work for every child and people need to accept that with each child there may be a better alternative. No two children with Autism or special needs are alike.

Mainstreaming is also a problem when teachers are not trained to work with children that have special needs and yet they are expected to do so. Not only are they often expected to have anywhere from one to five special needs children in their room but they are expected to do this in many cases without aides assigned to the children. Teachers often repeatedly express their concerns in this area and are often ignored.

Many parents are unwilling to accept that their child would do best in a mainstreamed class instead of a special needs class and vice versa.

Schools that stop all special education classes are quickly overwhelmed with burnt out teachers and students whose needs are not going to be met any time soon. Parents who do not have special needs children are angry that children with special needs are taking up so much time and energy from their child's teacher. Parents of special needs children are angry because their child's needs are not being met in a classroom that is not prepared for their child. These conflicts are then expressed either knowingly or unknowingly to the children who then repeat the comments from their parents/teachers to the other children in the class which causes further bullying and alienation.

5. Parents are not involved in their special needs child's education. Believe it or not many parents of special needs children do NOT attend IEP's. They have never met their child's teacher and they don't have the time to do so. Many are barely making ends meet. And sadly there are some parents who do not care. The teachers then look poorly upon those parents and more anger begins to brew. The parents are barely surviving and don't see how their input would make anything any better anyway.

6. Many teachers make poor choices that they wish they could take back. I have seen a teacher grab an autistic child by the back of his shirt and pants and heave him head first into a "coat cubby" repeatedly. The teacher did not see me in the room. She was at her wits end with this particular child who was refusing to leave the room for gym class. At that time I worked for this special needs preschool and was beyond mortified with what I saw. I reported the teacher and an investigation ensued. I knew this teacher was a very good person and totally regretted what she did. That did not make it acceptable however. I had to speak up. This teacher was not being given the supports for her classroom. The training was poor. This center also frequently did "take downs" on children and taught other people that were not trained in them to do the same. After the investigation the teacher was asked to leave or be fired. To my shock the child's parents took no particular interest in the event and how badly their child was treated.

7. I know of a teacher who stood a child in a corner for over one hour. Another that kicked a student in the leg. Another that called a student a "queer" every day. Another that joined in with students in making fun of a student. Another that kept a student after class so he could rub against her while he told her she was not doing good enough work in class. Another teacher that refused to teach a child because she believed that child would learn only when she was ready. Instead the teacher let the child spin most of the day, ignoring her. Another that repeatedly sent a child to time out for reading out loud when the child's only way to read was out loud. And yet another that...you get the picture. All of these in number seven are stories that I experienced or witnessed in one way or another. Now, remember I have no special needs and I can think of many unfortunate incidents where I or a friend was treated beyond poorly by a teacher. It is not just special needs children who sometimes endure terrible treatment. All children should be advocated for.

8. We are all kidding ourselves if we think incidents like the one with this little Autistic boy are few and far between. This is just one story that happened to make it to the news. One parent that spoke out. Many do not. Many are afraid too and some just don't care.

So, what I am saying here is this. Don't assume that everything is going just great at your child's school because you have just signed off on the most perfect IEP you have ever had the joy of working on. Don't assume that your child will tell you when a teacher hurts him or her. Don't assume that your child has the ability to describe or understand what 'wrong' has been done against him or her in school.

It is good to get the word out there as to what wrongs are being done to special needs students but don't assume that these are just happening here and there. Go to your child's school. Observe the class, walk the halls with the students, visit the extra classes such as gym, study hall and music. Show up unannounced and insist on hanging out for a while. Ask the bus drivers, the cafeteria workers and friends what they see and how they think your child is doing. Don't just assume because your child is quiet about school that everything is okay.

In our case months of aggression and sleepless nights led me to observe more at Maizie's school. I discovered things. Many of which I was able to help her with and some I was not. Let this story remind you that for our Autistic children every behavior is communication. If you can't decipher what your child is trying to communicate then it is up to you to investigate.

An investigation will be done in this case. Try not to be too quick to judge this teacher or this family, this child. These situations are very complicated. One or two news stories will not even scratch the surface. Once again, I am not saying this teacher should go unpunished if this is indeed what happened.

But, let it remind you to look to your own child, your own school and become more involved so that your child will be protected. If your child can't communicate it is even more important to be known at school. Let it remind you that the politics and red tape involved in advocating for your child does indeed affect your child as well. Unfortunately, it is not always as visible as the terrible situation this little boy endured.

There are many incredible teachers who deserve better pay and more recognition. We typically hear and remember the bad stories. Teachers are important and I am thankful for them and appreciate them.

And yet, I don't close my eyes to what is happening right around me because in this world all is not good.

For ideas on advocating check out my post Advocating With Your School...My Top Eleven List!

For more on this topic check out these important posts.
Club 166 Education, Survivor, and Hamburgers by Joe
Rett Devil's Rants Yes, Alex you ARE Special. The Good Kind.
Maternal Instincts Alex Barton Desreves Better
Asperger Square 8 Why I am Closing Comments on Two Posts
A Life Less Ordinary? Autism: An Update on Alex Barton

The First Ever World Autism Day

Today is the first ever World Autism Day. Hmmmm.....I bet everyone visiting my blog knows that. And from doing my regular "blog hopping" I see that everyone is writing about it too! Very good.

I am going to link to a few very important posts that I have read recently that tie into my most recent posts.

I am learning a great deal from those who have the most to teach...adults who have Autism in common with my daughter. They are opening my eyes and making it clear to me that I have a lot more to learn.

Sheila Schoonmaker wrote an article titled Eye-Non Contact Explained. Yes! First hand knowledge of this highly debated issue. I appreciate posts like this because it gives me insight and the "whys" of something from someone who has experience with it. As a parent I want to learn from Sheila so that I can better understand my daughter. I may not always agree but I value the opinions of adults with Autism and have found they help me understand and act in a way that is positive for Maizie.

Another eye opening post was written by Kassiane at The Rettdevil's Rants. The post is called Some things to keep in mind during autism "awareness" month. I must admit with Autism Awareness Month I am all ready feeling a tad bombarded with the media's ongoing portrayal of Autism. I am always conflicted with the reports I watch. When I read Kassiane's post I realized that everyone sees this month differently.

I began to wonder what my daughter thinks of the signs she sees hanging all over Toys R Us and the news stories on magazines and television every time you turn around.

For me, it is a lot to take in.

Maizie is the greatest gift God has ever entrusted me with. I plan to soak in every moment, to baske in this beautiful child God sent to me for a time.

Tonight we had a wonderful evening. Maizie was happy and playful as we went out for dinner and then to Target to so she could pick out a new bed spread. Guess what she picked out? A Hannah Montana bedspread.

Tonight as she curled up in her new cozy bed coverings she said, "Mom do I look good in my Hannah blanket?"

I smiled and said, "You are my Super Star. You are beautiful! No doubt about it. The star on my Christmas tree...the creme in my Cadbury Egg....you are my sunshine on a cloudy day...." Okay...you get the picture.

Day Two on Autism:The Musical...Thoughts Inspired by Wyatt

Wyatt is the son of Diane. Diane and Wyatt are having a heart to heart about Wyatt’s school situation.

Wyatt says, “One hundred percent of kids are retarded.” (In regards to his placement in a special needs classroom)

The mom asks,” Where do you want to be? Are you bullied in school?”
“Yes. When bullies grow up they get meaner.”

Click on the image above to view Wyatt talking with his mother about bullies.

I can speak from experience that Wyatt knows his stuff when it comes to bullies.

Wyatt talks a lot about bullying. I can’t begin to accurately describe the intense passion with which Wyatt describes bullies and what it is like to be at school with bullies. He has charisma and charm that defies description.

Elaine has the children do an exercise where they get to act out being bullies. Wyatt says, “It’s fun being a bully!”

A woman asks, “When you go back to school what are you going to do with real bullies?”

Wyatt looks at the camera and with great joy says, “That’s the mystery in the camera!”

Everything that Wyatt said holds a lesson for us to learn. He has insight into his own Autism and what it means to be Autistic. Wyatt sits swinging gently speaking on what it means to be in his own world and wonders why other people retreat into their own world. He is truly a child full of insight and is working hard to process what he knows and share it with us. Wyatt, like many people with Autism is a natural born teacher.

Most people think a child like Wyatt would be easy to place in school? He seems to hold his own and can speak. As the film went on many were probably shocked to hear that the parents were struggling to find a proper school placement for Wyatt. What they described is our experience with Maizie…completely. I am very glad this topic was brought up in the film. An entire film could be made around the struggle of Autistic children in schools. Or better yet…all children with special needs in schools.

Greg, Wyatt’s father explains that they are going to see an advocate/lawyer to help place Wyatt in a new school. The typical schools are not meeting Wyatt’s needs. Wyatt is not happy in the special needs classroom and wants to be mainstreamed.

To the parents surprise the lawyer reminds them that Wyatt has very low cognitive function. His test scores are low. I am assuming the parents were going to take the school to due process in order to fight for a private placement that would be paid by the state. They were vague so I am not certain. What is the cost for this lawyer’s service? A mere $430 per hour. If the case goes to due process it would run anywhere from twenty five to one hundred grand. Later the father says, “We’re pretty much fucked.”

Oh, how I know that feeling. According to HBO’S site Wyatt was able to get into a school especially for children with special needs and is doing well.

I am certain that is not the end result for most of our children. I have written about advocating with the schools before by giving my top list of tips. Even with my ongoing advocacy training and success with securing one to one aides for other students I was unable to secure a good school match for my daughter. There are no good choices for her schooling where we live. Private schools that are specially designed for Autistic children do not exist here. There are more families choosing home schooling for their Autistic child. I don’t know if I would really describe it as a true choice for us. It is more of a last resort.

Like Wyatt, Maizie did not fit into a special needs classroom. She longed to be with the mainstream classroom but zoned out and had little comprehension while there. Maizie was continually paranoid that children were laughing at her even when it was evident they were not. Her social skills were far behind her peers and she sensed it. Every evening she would cry and scream over what she perceived to be happening at school. Eventually we had to act as if it was happening and withdraw her from school for the sake of her own sense of self.

I would love to know more about Wyatt’s struggles in school and how this new school has been better for him. The focus always seems to be on everything but helping the kids that are here now. The press is all about the vaccines, the environment, the struggle and very little attention is placed on schooling and what we can do right here…right now…to help our children and adults with Autism.

What kind of supports would be helpful? I will start by asking our children and adults with Autism what they need. But will I be listening? Are viewers really listening to what children with Autism are saying in Autism: The Musical?

In everyday life it seems many of us are busy arguing the cause or the cure for Autism. I have forced ‘techniques’ on my daughter that obviously go against who she is. All because I want her to conform, to fit in to a world that often excludes the very essence that is her. Why do I do that?

Wyatt, Maizie and many other children are talking to us and we are so far off into our own world that we are not listening. Could it be at all possible that I am sometimes the bully in Maizie’s life? I don’t intentionally hurt her and never want to cause her stress so by definition I am not a bully. There was an underlying message in regards to bullying that was so strong in this film I have to question myself. I can’t ignore it.

If I know that certain ‘techniques’ or daily situations I force my child into cause her negative stress and physically bother her and yet I persist does that make me a bully? Sometimes, for my own reasons I force her to follow through, I coerce her to make eye contact, to speak to someone she does not want to speak to, insist she eat what she can’t tolerate and touch what repulses her, to stay seated, to go to a store she begs me not to, to hug when she does not want to be touched, to conform and fit in when she can not…and the list goes on. There is a better way.

I believe Wyatt is on to something with his interest in bullying. Are we hearing him? What are we doing with the information our children are giving us? They are all speaking to us. Whether through written words, the spoken word, sign language, movement, music, aggression, silence or art…are you paying attention?

Day One Review of Autism:The Musical

The premise for The Miracle Project is created by Elaine, single mother to Neal who is Autistic. Elaine’s idea is to, “shatter the myths of what a child with autism can do.” She opens a drama center and begins working with the children to create a musical. The environment was created with the idea of the children being surrounded by people who love them and accept them for who they are.

Are they successful? More than any program I have found for my daughter to participate in. If we had this program here I would sign Maizie up immediately. No doubt about it. And yet, I still saw parents in denial and unwilling to let their child be themselves.

Elaine’s son is shown climbing around on a table naked and throwing a tantrum. I am assuming that footage was originally taken to share with doctors. I know there was a lot of controversy about this scene. I don’t think the movie really needed to include the footage. It did not bother me as a mother of a child with Autism since I have seen my child behave in a similar way. I do wonder though what people who do not know about Autism would think. I don’t know what that scene really teaches or explains? Would that child be happy there is footage of himself climbing around naked? Probably not. What the mom is saying during that footage is far more important. I could relate to her words. Totally.

Elaine struck me as a mother who is willing to do anything for her son. There is a sense of desperation where Elaine is concerned. Her son would probably be considered the most severe of the children shown. He struggles with impulse control, speaking and engaging. Elaine is the instructor who will often insist her child and other people’s children look into her eyes when communicating with her. I found this extremely frustrating and uncomfortable to watch but it allowed me to watch this technique from the perspective of observer.

There was a time when I would force Maizie to make eye contact. I was the one grabbing her cheeks and saying, “Look in my eyes!” I was told by well meaning “professionals” to refuse foods or toys until she made eye contact and requested the item “properly”. The only thing this caused was an increase in aggression and low self esteem for our daughter. We stopped the technique and over time Maizie has become more comfortable making eye contact on her own terms.

The movie hints at Elaine’s obsessive need for eye contact. My husband Joe was bothered by it and said, “I think I would call it a bullying behavior on Elaine’s part and totally out of touch with the communication style and learning behaviors of the children. She was forcing them to do something they were very uncomfortable with.” I hope these scenes don’t cause my family and friends to grab Maizie’s cheeks and say, “Look at me in my eyes please!” Argh!

An aide named Veatrice works with a boy named Adam. The most harmful comment in the entire movie came from Veatrice, “If he wasn't Autistic I keep thinking…imagine the possibilities.” This reminds me that many of the people we hire and pay to work with our children are the very ones who keep them down unknowingly. They may have all of the best intentions but if that is true why would they say such things? About my daughter I say, “Yes…she has a chromosome disorder, she is Autistic and she has cyclical vomiting syndrome and yet, I see a whole world for her. She is amazing and her world is full of possibilities.”

Veatrice goes on about how she has worked with Adam since he was three years old. She explains that Adam has to be able to blend in with the other children. We are all always pushing for conformity. I don’t want Maizie to conform. I want her to be who she is.

Almost everything with Veatrice, the mother Roseanne and the father upset me. The father explained that Roseanne is resentful of his life because he is able to travel the world and her career is over. Roseanne says her job is to keep her son out of an institution. It is the father’s job to bring home the money, travel the world and at one point he describes Roseanne as a, ‘crazed mom of a disabled kid’. I am not sure what he meant by that but I was insulted by it. Joe says he sees some truth in what he said. In this respect it sparked an interesting dialogue between Joe and me. A movie that can affect us to this degree is definitely worth watching. As a couple we have certainly never seen a movie that so directly reflected many small aspects of our own lives.

In these people we saw a lot of ourselves and it was painful to admit.

The most positive aspect of this film is that it shows children with a wide range of skills. Maizie was often denied a diagnosis of Autism because she could make eye contact and is affectionate. All of the children in this film are wonderful, loving and affectionate children and all are Autistic.

This film has depth and brings up important issues. It will make you contemplate how you and others relate to your child with Autism or special needs. Anything that gets us thinking and pushes us to change, to improve, to get angry and to be filled with joy is worth watching.

At one point Elaine’s son is given a typing device to communicate through words for what appears to be the first time. His first words were directed at his mother. He tells her to listen to him more. That is powerful stuff coming from a non verbal child. Advice we should all take to heart.

Tomorrow I am going to write about a boy in Autism: The Musical. His name is Wyatt and he is obsessed with bullies.

Watch the movie online for a limited time.

Archer is Baptized and we Watch Autism: The Musical

Tonight we were able to get one of Maizie's favorite sitters, the mother of our best babysitter Amanda. Her name is Nancy and she radiates love and a passion for life that is contagious. Maizie senses this and soaks it up. She was thrilled to be able to spend time at Nancy's house.

Baby Archer was looking quite handsome in his baptism gown. In the photo above he is smiling because I am holding him. The ceremony was short and beautiful. Afterwards we went out to dinner with Sean and Carol's extended family. A nice time was had by all. We feel blessed to be baby Archer's God parents.

When we arrived at Nancy's house Maizie was "teaching" their dogs tricks. Boomer is seen in the picture above as Maizie places a snack on his head. Nancy's other dog Chloe was just as patient waiting for her treat. There is something about dogs for Maizie. I am convinced her ability to interact with dogs is a gift.

Joe and I just finished watching Autism:The Musical. After I let it all simmer I will share my thoughts on it. I fell in love with the little boy named Wyatt. I have never seen a child in a film where I said, "Oh...my...that child reminds me soooooo much of Maizie on a 'talkative' day." For me, that in itself was an experience.

Until tomorrow....sleep tight and don't let the bed bugs bite.

American Academy of Pediatrics is Looking for Stories to Share

The American Academy of Pediatrics is looking for families that are available to share their stories in regards to supporting vaccinations. Considering the increase in Autism stories in the media it is important to share interesting stories where families understand that vaccinations are not the cause. Please read the following letter to see if you are interested. If you are, e-mail the AAP at the address provided following the letter.


Hello,

As part of our ongoing response to media stories regarding autism and vaccines, the AAP communications department is compiling a list of parents who support the AAP and are available for interviews.

We are looking for two types of parents who could serve as spokespersons: Parents of children with autism spectrum disorders who support immunization and who do not believe there is any link between their child's vaccines and his or her autism. Parents of children who suffered a vaccine-preventable illness. This could be a parent who declined immunization, whose child became ill before a vaccine was available, or whose child was ineligible for immunization.

We are asking for your help identifying parents who would be good spokespersons. They do not need to be expert public speakers. They just need to be open with their story and interested in speaking outon the issue. We will contact candidates in advance to conduct pre-interviews, to offer guidance on talking to reporters and to obtain a signed waiver giving us permission to release their name.

If a parent were placed on our list, we would offer their name and contact information to select media. We hope to build a list of parents from a wide range of geographical areas. As the Jenny McCarthy and "Eli Stone" stories illustrate, this issue is likely to recur in the national and local media. The AAP is committed to doing all we can to counter such erroneous reports with factual information supported by scientific evidence and AAP recommendations.

The anti-vaccine groups often have emotional family stories on their side. The ability to offer a reporter an interview with a similarly compelling parent who is sympathetic to the AAP's goals is a powerful tool for our media relations program.

Please contact me if you have any questions or to suggest a parent to interview.

Thank you,

Susan Stevens Martin
Director, Division of Media Relations
American Academy of Pediatrics


Please e-mail ssmartin@aap.org (Susan Stevens Martin) direct.