Saturday, August 23, 2014
I wanted to write a quick blog post to give everyone a bit of an update. I am going to bee adjusting and making some updates and changes to this blog over the next few months. I also have a few over dues reviews including my review of the Alexicom app and posts I have not published typed. Please be patient this havps been an extremely busy several months but I will post them as soon as I am able.
Thant you for your time and understanding
Sunday, June 29, 2014
Dear Sesame Street,
This was one of the flash blogs I have been more passionate about. I was raised with Sesame Street! It is a beloved childhood memory for me, along side lamb chops! Growing up as a very small child I was very sick. I ended up having open heart surgery at the age of 4! One of my favorite movie was big bird goes to the hospital. I would always watch it before I went and over and over again at home. This show acted as a social story for me and greatly helped ease a lot of my anxieties. I admit to humming or playing the main song from it to this day at times I have had to take my retired service dog or my pup in training to the vet. Especially to emergency vets. So you see, your show still has a place in my life today! So I wanted to make sure I did this blog post right. Before I wrote this blog I did a bit of research and red some of the things there bloggers had posted, then I decided to read through the comments section.of a post shared by the huffington post. It was heart breaking to say the least. There were people and parents commenting about how this boycott and the boycott of autism speaks is all "high functioning," autistics and not by "real severe autistics," or that their kids had severe autism and autism ruins lives ect. There were a lot of great replies by other autistics to such comments. But those comments to tell the truth still hurt I started to wonder if I should write this blog? I started to think that maybe I didn't have a place to speak on this, because maybe I was to "high functioning," and people would see me as to high functioning and thus anything I had to say on this matter would be tossed aside as not having value because I wasn't severe enough. I decided that, eepven if that does happen I still need to write this blog and get it out. So here we are!
Why am I mentioning this??? Because this is the exact type of message autism speaks sends out! They promote an us vs them mentality in the autism community. Autism speaks demonizes autism and use fear about autism to raise awareness an get their funds. When autistics have spoken out to them on this they dismissed them as to high functioning. This is a form of shaming I call functioning shaming. They are saying if you do not like what we say about autism you are to high functioning and your voice doesn't matter. The truth is this boycott isn't just by those with high functions autism you will be hearing from many with moderate to severe forms of autism as well. Functioning shaming is very damaging and the truth is those who tell you we are all high functioning and thus don't have the right to speak on this matter don't know us, they don't know our lives our challenges or struggles. Please don't fall for the functioning shaming. The truth is functioning labels are even real diagnostic labels and have been proven to be unsound, and they are often based on of someone can't speak or not. However there are plenty of people on the spectrum who are verbal to highly verbal but can not care for themselves or live independently and there are those who are nonverbal that have decent self care skepills and may one day live on their own. Don't dismiss the many and diverse voices of this community.
As well as reading what others have written I watched the video with Abby the fairy where the autism speaks partnership was introduced. Susan wright talked about an initiative to combat the stigma of autism and to celebrate the amazing in all children. I admit I was in a bit of shock, because you see autism speaks is one of the biggest promoters of the stigma surrounding autistics!!!!
It really baffles me that they claim to want to address the stigma and promote acceptance of autism cause they are the biggest contributors from their autism every day video to their address to congress last fall.
They tell you they want to help fight the stigma and promote understanding and acceptance of autism,so let's examine a piece of their work really quickly. Tell me if this sounds like promoting acceptance and understanding for autism and combating the stigma. in their address to congress in a call to action they stated
"These families are not living.
They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely - 24/7.
This is autism.
Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.
This is autism.
On the good days my daughter Katie and all the other moms out there – 70-million around the world – see the sun shine. They notice the brilliant colors of the autumn leaves. On bad days, they are depleted. Mentally. Physically. And especially emotionally.
Maybe they have been up all night caring for their teenage child who’s having a seizure.
Maybe they are up yet again changing the sheets because there’s been another bed wetting accident.
Maybe their child has been trying to bite them or themselves.
Maybe they can’t afford the trip to a doctor specializing in autism.
Maybe there is a waiting-list for ABA, speech and OT.
Maybe their insurance won’t pay.
Maybe they don’t have the money to pay a special lawyer to fight for school services.
This is autism."
They went on further to say this;
""Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.
This is a national emergency. We need a national autism plan – NOW."
They completely ignore the vast diversity of the spectrum and pain an image that everyone with autism is like this and that those who are like this basically aren't human. They don't celebrate their amazing they stigmatize and spread fear.
How is this not promoting the stigma and demonizing those with autism? This isn't acceptance and fighting for acceptance this is pure unfiltered fear and dehumanization. This isn't combating the stigma or showing the amazing at all! It's just a lot of harm and stigmatizing.
Here is what autism speaks really says the messages they have continually and my views on them.
We are not we are here, we hear and understand everything you say even if we can not speak we understand you! We are right here listening waiting for you to reach out and meet us where we are at and to love us and accept us for who we are, not where you wish we were or who you wish we could be.
Autism speaks says we don't communicate:
we can speak or do speak we are ALWAYS communicating with you, it just isn't in ways you expect! It's ok to be anxeous it's diffrent I know but if you put aside everything you have been told and all your preconceived notions of how things should be and really open your heart and your mind you can find away to reach us, but you have to be ready and willing to enter our world.
Autism speaks tells you our lives are a tragedy,
We are not tragedies we are people who live, yes we are disabled yes we have challanges but our lives matter we still have value the real tragedy is the fear and dehumanizations spread by organizations like autism speaks so they can get your money
Autism speaks will tell you we don't have a future,
We do have futures and with the proper supports and services and with understanding and acceptance from the community we can have fulfilling and bright futures, If we are taught to embrace our passions and build our strengths then we are capable of anything we may dream! All we need is the right supports, services and acceptance
Autism speaks tells you we are puzzles missing pieces
But we are not, our lives and challenges may be puzzling to you and navigating your world maybe puzzling to us, but we are whole and complete people! We aren't broken! Many autistics don't like the puzzle pieces because of the negative things autism speaks has attached to it, but the autism ribbon is multiple puzzle pieces and wasn't created by autism speaks, autism speaks has on single blue puzzle piece that reflects pretty well their one sided narrow view on autism.as well as the negative messages they spread. I how ever embrace the multiple puzzle pieces, they are bright and vibrant and uniques as each person on the spectrum, the variety of colors to me show there is a large and amazing spectrum of people living with autism, I also see them in a different way! Not that I or any other autistic is broken or missing pieces but rather that we are whole complete amazing beautiful individuals and it is the community that is missing pieces, these pieces are the proper supports, services acceptance and understanding, with those pieces we can become part of the community! However I do acknowledge and respect that some autistics do not see it this way and perfer to not use puzzle pieces and that ok too.
Autism speaks tells you they speak for and advocate for autistics
The truth is they don't! Rather quite the opposite. They actively seek to silence autistics! From their very beginning autistics have spoken out to them, trying to explain to them why their adds hurt autistics and what they should change! They never listened! They shut out every one of them! A few years back a 14 year old girl made a parody sight on them after they made their "I am autism," video that Basically demonized autism and was honestly really creepy! The site mirrored how autism speaks spoke about autistics only for NTs or non autistics they went after her, claimed she owed them a tone of money in lost donations then said they wouldn't make her pay if she signed over the rights to her website,! They BULLIED an AUTISTIC CHILD!! To add to this autism speaks has never had a single autistic person on their boards of decision maker or in any meaningful positions in their organization. There is a stance in the Autism community Nothing about us with out us. Yet Autism speaks feels they can and should tell you all about us, without us and they have no problem trying to shut us up and silence our voices when we object to how they do it. recently a bill has been up for re approval, the combatting autism act (think of this title for a minute) which was changed to the autism cares act (a much better title) there was a very big amendment to this bill that was purposes that autism speaks BLOCKED!!
For a clear explanation : http://autisticadvocacy.org/2014/06/asan-statement-on-autism-cares-act/
That's right they blocked an amendment that would require autistics to be involve in several of the boards and such that are part of the autism cares act! It that isn't actively trying to silence autistics what is?
Autism speaks doesn't speak for autistics, autism speaks hurts autistics!
We can't continue with this type of awareness! You can not combat the stigma by partnering with an organizations that spreads it to get donations.
Sesame Street you have always been about inclusion and treating each other as equals. This is why I hope you will and I ask you to please, hear our voices and reconsider this partnership with autism speaks! You will find and see a ton of people reaching out to you asking you to reconsider this partnership as well! autism speaks doesn't value equality or understanding. This is an organization that really hurts autistics! We as a community are excited you want to create an initiative to promote acceptance and combat the stigma so Please consider other organizations such as Arc, The autism self advocacy network or the autism women's network. These organizations do promote, acceptance and true understanding. They value the lives views and voice of autistics something autism speaks does not.you cant combat a stigma by joining forces with those who promote it!
Saturday, June 14, 2014
I am not sure when or if this will be doable but I want to creat a community somewhere for Nonverbal semi verbal partially verbal and even verbal adults with autism and other disabilities who are either full time part time or just occasional aac users as well as parents friends family and even professionals like speech pathologist ect to come together and share tips advice and most importantly to share things like symbols to use with AAC devices and visual supports. Right now I am working on looking into how to get this type of things set up. it will keep you informed as I work on figuring this out. If you have any suggestions please feel free to comment or send me a message
So, I am using the free version of the Alicom for this testing, I have been fiddling som with the voice as at first it was male and completely un understNdable . After. A bit though of playing with the setting I managed to get a voice that is realtivly clear and tolerable. Below is a photo of the settings I am using for voice, how ever I may fiddle with the voice settings a bit more.
One major down side I am finding is there isn't a simple preview button in the settings to hear the voice while Editting it so I have to change a setting then go back and test it out, which can be time consuming and a bit frustrating.
Sunday, June 8, 2014
I am a bit late on this as everything has been kind of very busy here! But I am about to begin my testing session of the Alexiocom. I am going to be testing the free version of this app first and may when there is a sale test paid version later. Tomorrow's starts the first day of the testing!! In the meantime here is a nice screen shot of the opening page symbol :)
Saturday, May 24, 2014
What is an autism service dog?
Link : http://www.ada.gov/service_animals_2010.htm
"Under the ADA, service animals must be harnessed, leashed, or tethered, unless these devices interfere with the service animal’s work or the individual’s disability prevents using these devices. In that case, the individual must maintain control of the animal through voice, signal, or other effective controls."
Link : http://www.ada.gov/service_animals_2010.htm
Odds are if you are reading this you are already familiar with autism but for those who may not know, Autism is a complex neurodevelopment disorder that affect both verbal and non verbal communication, social skills and sensory processing.
Autism service dogs (also call SSIG or sensory signal alert dogs) are dogs trained -Tasks- to help an Autistic individuals, these are general tasks that help with the sensory processing issues many of us on the autism spectrum experience. Things such as hearing and guide work may be taught for individuals who have trouble processing or who are either over or under responsive in the ares of visual and auditory processing. Autism service dogs may also be trained to retrieve objects and such during overload that help the individual communicate or get through the overload. During overload autism service dogs may also help guide handler out of a building or to a quiet place where they can safely recover. Each autism service dog is going to be trained different tasks based on the needs of the handler.
Unfortunately many organizations don't train proper autism service dogs and out right refuse to train them for adults, there are a few that do though. Autism service dogs can help give an adult with autism independence and drastically improve the quality of life of autistic individuals.
Things that are not tasks/ do not qualify a dog as a service dog
- Any natural -untrained- behavior
- Guarding handler
- crime deterrent
- Increasing socialization,
- Natural calming presence
- Search and rescue (though a handy side think not really a legal task such as it is define)
- Basic obedience such as sit stay come ect
- Laying under a table
- Emotional support
- Increasing confidence.
- Watching the child or adult
- Helping individual make friends
- Natural untrained alerts
While there is no doubt some of these things listed above such as natural ale retrying and offering emotional support are helpful and can have a massive positive impact they are not legally considered work or tasks. There are others on this list like babysitting a child or tethering that are not work or tasks and should never be promoted as such.
Service dogs for children
This is an extremely complicated and emotionally charged area to talk about, the truth is this is a really grey area.a lot of parents first look into autism service dogs as a I way to get help with things they find challenging with thier children, bolting and wandering be the primary and some want them to help this kids make friends. As stated above this is not actually a task or work. Service dogs are not babysitters and shouldn't be trusted to watch over your child anymore then you trust a toddler or a wheelchair to babysit your child. A service dog need to have tasks that help the child. Another issue is that of stewardship most autistic children simply are not able to steward a dog. while it is clear and should be common sense a 2-4 year old can't steward thier own dogs it is also important to remember many older children still aren't able to do this, Most children with autism can't care for themselves much less steward thier own dogs. something that is required by the Ada of any service dog handler, however there we some who will be great candidates for a service dog and will be able to steward their own dog and may really benefit from one. so an inability to steward ones own dog can't be blanketed to all children. So really this needs to be decided on a case to case basis,
if you are considering a Service dog for your child here are some things you need to do and consider
you need to first you need to do is consider Why do you want a service dog? If you want it for emotional support then you might want to look instead into an emotional support animal see below. If you want it to make your job as a parent easier or to serve as a physical anchor to prevent your child from wandering or bolting off in public then a service dog really isn't right for you. Please reconsider and or think of other ways the dog might be trained to help your child!
next you need to determine if your child can steward thier own dog, if not will you or a staff member be able to be with them at /all/ times that they are with the dog and the dog is working?
What sorts of things does your child need help with? What can the dog do to help your child? *remember the dog has to help the child not you as the parent* it is also important to remember what things do not count as tasks as many organizations will try to sell you a 5-30,000 dollar sd based on these non tasks!
Service dogs are expensive and a /lot/ of work, do you have both the time and money for one of these dogs? While the benefit from a service dog can be amazing it is important to remember the cost isn't just what you have to pay or raise to get the dog it is also the dogs care over a life time, you will need to pay for vet bills both annual and for any emergencies, food, toys ect. You will also need to maintain the training which will require regular daily training session and then find time for exercise and play for the service dog. Are you able to provide all of this? Do you have the resources you need to provide this? Are you ready willing and able to make and to take on such a serous commitment?
Taking on a service animal is to take full responsibility for the health and care of this animal over a life time! Eventually the dog will get hurt or sick and eventually the dog will get old and will need to retire and sadly will eventually die! What do you plan to do if the dog gets sick, injured and can't work anymore? What about when it gets old and needs to be retired? If your answer is to just drop the dog off at some shelter once it is old and used up a service dog is not right for you! These dogs need care well into their old age when you takes on a service dog you are promising to be there until that dogs last days as painful as they will be.
Getting a service dog isn't like getting a full time babysitter it's like getting a second child!
These are only a few things to consider before getting an autism service dog for your child,
I made this it's own category on purpose
Tethering is a dangerous practice used by most "autism service dog organizations" as a method of preventing wandering. While wandering is an issue I take very serously and something I struggle with as an adult with autism I can tell you right now this is a very dangerous and borderline unethical and borderline abusive practice there are risks to both dog and child!
Note the ADA requires the handler be in control of their service animal,however tethering puts the animal in control of the child, which is technically a violation of that ADA requirement
Injure and strain on the jigs joints When a child suddenly decides to bolt
If the child is strong enough the dog could end up getting dragged by the child. Additionally a child who is strong enough could knock the dog off balance or cause it to stumble should they bolt suddenly . while this is not a likely occurrence with smaller children kids grow and become both bigger and stronger.
The dog that is tethered to a child can't escape and may be injured by a child who is melting down especially if they are prone to violent outbursts as they are a close target
To the child
- A fall or physical injury caused when the child tried to bolt and the dog does as it is train and stop and sits or lays down. The child who is bolting will rather suddenly be stopped and could become injured
- Service dogs are still dogs, sometimes they make mistakes, should this happen while a child is tethered to the dog especially if the isn't a parent holding the dogs leash, known as tripod ding, the child can be knocked down and possibly dragged by the dog should they try to chase a squealer.
- Last but not least and the most frightening the child could be attacked or get caught in the middle of a dog fight! Unfortunately service dogs have on many occasions been attacked by other dogs while working, usually by a dog who is off leash or if someone brings their dog up to try and greet your working dog! A child who is tethered to the dog when such a thing happens runs the risk of severe physical and psychological damage!! Are you will to risk having your child tied to a dog that is being attacked by another dog or animal?
Some organizations also promote tethering more then one child to a dog, this is out right abuse plain and simple and will increase risks to both kids and dogs
More info on tethering please read
Finding a proper program is very challenging as many organizations that claim to train autism service dogs are often placing tether or search and rescue dogs, often these are what people call cookie cutter dogs and are sold often on the emotional benefits and don't tend to train tasks that help the child.
If your an adult looking into getting an autism service dog it is going to be even harder most organizations refuse to train service dogs for autistic adults period! There are a few good ones that do by they are very hard to find!
Alternatives to tethering
As I have stated wandering is an issue that I take /very/ seriously! As an Autistic adult wandering is something I still struggle with regularly and I know several wonderful Autism parents who have lost amazing children to wandering. tragic deaths that should never have happened! however tying a child to a dog is not a safe or good solution! here are some alternatives ( I will update this as i find new ones)
- have a soft handle attached to the dogs vest for the child to hold on to.
- Have mason alert flyers ready for an emergency with current photo, child or adults name, age, if they are verbal, nonverbal, semi verbal or may become non verbal, what they and the best way to approach and communicate with them, sensory aversions, what not to do and a list of local hazards and things the child is drawn to like water, Also make sure to have contacts list a written description and any identifying features.
- ID on the child such as a medical alert bracelet
- tracking device
- use a stroller if you are able
- tether the child to you and not the dog: if you are still concerned about bolting and you really need to tie you kid down so they cant run off tether them to you! you are the parent/caregiver and you can better understand and take being hit or kicked during a meltdown! you are also generally stronger than a dog.You are also much less likely to forget what your doing and try and chase a surreal!
When looking for a program
- Avoid any Program that promotes non tasks as tasks such as emotional support and natural reducing of meltdowns or says the dogs will be protective of you or the child
- Ask about tasks, ask for examples of tasks they might train
Emotional Support AnimalsEmotional support animals (ESAs) are a great alternative to a service dog, the handler of an emotional support animal doesn't have public access rights that service dogs do, how ever they do have special housing rights. Emotional support animals do need to have some basic manners and may even be natural a letters but they generally aren't task trained like service dogs must be. Though they can't come around public with you ESAs are can be highly beneficial alternative to a service dog as they do provide the child or adult with emotional support and their presence may naturally help calm calm the person, reduce meltdowns ect
Learn more: http://servicedogcentral.org/content/ESA
Wednesday, April 9, 2014
Every year in April autism speaks asks you to "light it up blue," for "autism awareness" and while all the major cities,towns and people who have a loved one with autism or wish to show support for autism are putting out blue lights to show support and spread awareness for autism.
I will NOT be lighting it up blue!
Instead A few friends and I are hanging up Christmas lights!
"......Wait.....what? Well why are you hanging Christmas lights? Are they blue Christmas lights?"
Nope they have many different colors, we hang the multi colored Christmas lights. Sure there are some blue lights, but also green, yellow, pink maybe some purple.
"Why are you hanging them why not just blue? Your autistic shouldn't you be eager to light it up blue and spread awareness for autism?"
Eager to light it up blue NO! spread awareness for autism well yes...but MORE importantly to spread ACCEPTANCE and UNDERSTANDING!!! And that's why I hang the Christmas lights instead!
When it comes to the light it up blue event,I used to really like it, I thought it was nice because to me in one way it was nice, nice to see this massive out pouring of support from all the people in the local towns to the major cities and countries all around the world! We used to enjoy riding around to see how many blue lights we can see in the neighborhood. Or local cities!
However now it is something else, while I still appreciate seeing the support from everyone it is also a very sad sight for me to see as well.
"But how can it be sad?....oh you mean because of how many people are affected by autism?"
No, it is sad to me because to me it is just one giant advertisement for autism speaks!!!! Autism speaks's color is blue! Blue is NOT the "color of autism," it is the color of autism speaks. In fact autism doesn't have one specific color to represent it! the autism awareness ribbon created by the autism society of America is made up of multi colored puzzle pieces, and while there is much controversy over it I feel it is a far better representation for autism then the single blue puzzle piece, additional organizations like the Autism Self Advocacy network, while they don't use the awareness ribbon their symbol is made up of a spectrum and variety of colors! It is really quiet lovely
when people see all these blue lights they will likely go and google why it is if they don't already know and they go looking for why there are so many blue lights in April it will lead them to information about autism and right to autism speaks.
I disagree with autism speaks for Many reasons, mostly due to how they allocate their budget, the fact they have zero autistic people in power, their refuses to listen to autistics and their use of fear and negativity to promote their "awareness," you can read here where I go into more detail on the issue.
Another reason I don't like lighting it up blue is because blue is the color of the child abuse awareness ribbon!!! Lighting it up blue should be to spread awareness of child abuse NOT autism!!!! Child abuse awareness month is also in April by the way! The ironic thing is people used to believe autism was caused by child abuse, today we know very well this is NOT the case, but there is something about the child abuse awareness ribbon being blue and that false belief that make lighting it up blue feel very wrong to me, like I am promoting the idea of child abuse causing autism, which is extremely WRONG!!!
April is autism awareness month but big organizations like autism speaks seem to make it all about them! It is their time to really get into everything, local tv news, talks shows, commercials and stores asking you for your money, your donations. Claiming to "help autistics and their families," when only 3-4 percent of the donations they get actually go back to the community! Essentially taking money from more important places in the community such as arc or Easter seals who actually provide services, therapies and interventions for those living with autism! Most of their awareness is based on garnering donations through the use of fear. Awareness is no good if it is done through fear!!!
A few friends and family of mine have decided to say enough is enough! We are taking back April and autism awareness month! We are making this April about autism and promoting acceptance, we are making it about the accepting autism, understanding autism, we are making it about autistic individuals, their families, friends, teachers and care givers!! Not about organizations like autism speaks, April is for those of us living with autism We want more then Awareness we want Acceptance! We DONT want April to be about lining the pockets of autism speaks, or for it to be a giant add for an organization that dehumanizes autistics and has several times over the years shut out autistic voices and refused to listen to them, so let's spread acceptance for the entirety of the autism spectrum not just the severe or mild end! So we decided to do our own thing for April
So instead of lighting it up blue, we lights it up with Christmas lights!!!
Christmas light for acceptance of the entire spectrum!
Christmas lights to say "we are taking back April for those living with autism! We will not the spread the promotion of hate and fear by organization like autism speaks trying to get your money! We stand for acceptance support and understanding not fear! April is about those of us living with autism NOT about Autism Speaks!!!!