Posts Tagged ‘Gracie’


A very important concept in fighting for Disability Rights is moving away from the Medical Model and towards the Social Model. Acceptance over a cure. Creating Universal Accessibility ideals that are helpful for everyone so that no one may be excluded.

To make it easier to understand I’ll give visuals:

This staircase is lovely, with a ramp built into it as an integral part of the architectural design.

The ramp is built into the architecture as art rather than an afterthought at Robson Square in Vancouver by Arthur Erickson

Robson Square in Vancouver by Arthur Erickson

 

 

 

 

 

 

 

 

 

 

This design below eliminates the staircase altogether in the form a beautiful circular, winding red ramp that everyone uses at the Ed Roberts Campus in Berkeley, California. It’s difficult to see from the photo below, but the doors are also wide and airy, and it’s reported that most visitors find this layout to be very warm and inviting.

Circular Ramp Ed Roberts Campus in Berkeley, Calif; example of Universal Design

 

 

 

 

 

 

 

 

 

The Greendale Villa near Disney World is known to be disability-friendly and uses Universal Design in its architecture. They even use it in their swimming pools.

Accessible Universal Swimming Pool at Greendale Villa in Fla.

Accessible Universal Swimming Pool at Greendale Villa in Fla.

 

 

 

 

 

 

 

 

 

 

The examples I gave are easy to understand because you can see them. They’re also easy to understand because they’re inclusive for people that have visible physical disabilities for people that use wheelchairs; parents using strollers or are holding a wobbly toddler by the hand; aging individuals or others who need a walker or a cane; people that have a cast on their leg and use crutches; a postal delivery person carrying or wheeling heavy packages; a student lugging around heavy books or an enormous art project; a caterer making a delicate delivery. The fact of the matter is that stairs are clumsy and difficult to navigate.

When it comes to the disabilities that you can’t see, the Universal Design within the Social Model is still not only an ideal, but a necessity. We’re not demanding that the world change to give disabled individuals “special treatment.” We’re hoping that the world will understand that a level playing field is the goal. We’re hoping that by showing care in being inclusive to all, people might start to figure out that disabled individuals are valuable and have as much to offer and contribute as anyone else does.

I see resistance to these ideas because I think some people believe that acceptance of disabilities means giving up, not trying, not caring, being willing to somehow not be enough of something. Human maybe? Even though disabled people are fully People, fully Human, no matter the disability. But for many people, the Social Model means that those who have disabilities have the audacity be disabled; to not hide the disabilities adequately enough to appear to have no disability at all or, worse, to not have overcome the disability or disabilities. The problem with resisting the Social Model is that the Social Model benefits EVERYONE. That’s how inclusion works. Funny, that.

Imagine these ramps that are inclusive of everyone as communication barriers that have been broken down for people that have mental health disabilities, developmental learning disorders, cognitive function disorders, traumatic brain injuries, intellectual disabilities, impaired vision, impaired hearing… and all of the other invisible disabilities that so many people forget about when it comes to universal designs.

It can be as simple as recognizing that there are multiple ways of communicating. Even a newborn baby can communicate through facial expressions, body language, different types of cries, different vocalizations, eye contact, and even how fast or slow they’re breathing. Someone that is classified as non-speaking and “incapable” of speech is still always capable of communicating.

So if you have someone that’s Autistic or has a speech delay and their parents have been told they’ll “never” speak because they seemingly aren’t verbal since they haven’t  (yet) communicated verbally, what do you think the assumption tends to be?

“My child can’t communicate and never will, and therefore they must be intellectually disabled.”

That sounds so dire, doesn’t it? I would bet my left butt cheek that their child uses body language, facial expressions, other sounds, or possibly even sign language of some sort to attempt to communicate. Pointing, shaking the head, refusal of performing a request and performing a different behavior instead… that’s all communication. It doesn’t mean that the child doesn’t understand what’s being said or asked; it simply means they need another way to communicate.

Hear this well: non-verbal learning disorders and delays don’t mean someone has an intellectual disability, or that they’re incompetent. While neurological disorders and other disabilities such as Autism and Non-verbal Learning Disorder and Sensory Processing Disorder and Cognitive Delays can co-occur, they are mutually exclusive of each other.

This means that you need to assume that your child or any other disabled individual you come across should be presumed to be competent. Presume they can hear you and understand you, and maybe even read. Maybe learn to use cards with images on them. Offer a computer keyboard or a tablet. See if your loved one enjoys drawing, painting, or a craft. Art is also communication. So is music. So is math. Everything someone does or doesn’t do is communication of some sort.

Disability does not make one less. It’s not something to be ashamed of. As someone with disabilities I’m not going to sugarcoat it and say that disabilities are fun and everyone should join me and have them. I’m not going to say that the challenges aren’t incredibly difficult, and that some obstacles don’t really seem impossible to ever overcome. I’m not going to say that it isn’t discouraging at times. Being disabled often sucks, but it doesn’t mean I’m miserable.

And that’s something else.

One big assumption about individuals that have disabilities that needs to disappear forever is that “being disabled means being miserable and life isn’t worth living.” That statement is a myth and it’s offensive. It’s why I found it heartbreaking, tragic, and ridiculous when people decided that Robin Williams’ suicide was understandable when they discovered it was so he wouldn’t have to progress with his disability rather than because it was part of his lifelong depression and, thus, “selfish” of him to commit suicide.

Life is more than worth living when one has one or more disabilities and it’s no one’s place to put value on someone’s life, to measure their worth or right to live or whether someone’s life is a tragedy based on the single fact that they have disabilities or make assumptions on someone’s suffering levels. Life is still worth being part of society, part of family and friends, and having society recognize that individuals who are disabled have just as much to contribute and deserve to earn a living wage, with voices and opinions that are strong.

Part of making society acceptable, part of the Social Model needs to be dispelling myths and incorrect stereotypes about disabilities in general, and disability-specific. For instance, individuals who are autistic are not “suffering with Autism” and nor are they emotionless. They are autistic. Very often, in my personal observations, it seems that autistic individuals are more sensitive to emotions and they most definitely aren’t suffering due to their Autism. The suffering occurs from the treatment of others who may be abusive and less understanding, less accepting, and being in environments that are not disability friendly. For instance, lights that are too bright and music that’s too loud in a store that can already be disconcerting makes the experience nearly impossible for some. It’s an assault on the senses.

There are movie theaters that now offer sensory friendly screenings of movies. They will advertise a specific movie with the times, locations, and accommodations being made: raised lights; reduced level of sound for the movie; allowing wandering during the showing within the theater itself; allowing talking; providing ESL interpreters; allowing carers such as PCA’s to accompany without having to pay additional fees.  Universal acceptance, Social Model.

Assimilating universal designs into our society is an acceptance that everyone of any ability is valuable and worthy of having access to anything and everything. It’s a recognition that everyone’s needs are different. It’s difficult when much of society isn’t just afraid of acknowledging disabilities, but disgusted by them. There is a lot of fear of being seen as different, as Other, because once someone sees you as disabled, you’re also seen as weak and incompetent. There are a lot of people who try to take advantage of that perceived weakness, and there are those who use their physical intimidation to put themselves in a powerful position and misuse it. It’s called bullying.

For me to accept my disabilities relating to Fibromyalgia, depression, anxiety is not giving in or giving up. It’s not accepting a suffocating, negative label. It gives me a name for the obstacles I have to cope with, and a starting point to learn. It means that while I accept my disabilities I can still do my best to help myself feel better. I may have some cognitive issues and massive physical pain that would bring down a horse, but I am not weak nor incompetent. I have strong opinions. I’m a self-advocate and I advocate for my children and others. It’s not easy for me to accept my particular disability because it’s physically and mentally taxing. It’s scary to realize that it’s going to progressively get worse. That just makes me work even harder to take care of myself.

By the same token, by accepting my daughter’s Autism, I’m not throwing her to the wolves and giving up her, drowning her with alphabet soup letters and labels. Discipline doesn’t go out the window. Education doesn’t get tossed in the wind. I’m helping her along with her sisters learn about who they are, what they’re going through, and working out the process with them. We’re learning together how to identify their strengths, talents, interests so that they can learn how to best communicate and what their best learning methods are.

Along the way, we’ve figured out which clothing can trigger negative behaviors. We’ve learned which ingredients in particular foods and drinks to avoid. We’ve learned what weather changes can do to health. We’ve learned how to adjust our thinking, our language, our expectations. We’ve learned that these things change and are fluid and that being flexible as parents and caregivers is simply the best approach.

In doing so, I’m trying to make the world more accessible for her. I’m letting her be who she is without trying to change her. I’m not trying to make her “pass” for neuro-typical or, as those of us who are non-autistic are sometimes called by some people in the Autistic Self-Advocate Movement, Allistic. I’d like her to know that she can change her world. She does need to learn how the “Allistic” world works so that she can navigate it, but whether she ever appears to be like her non-autistic peers isn’t really on our radar.

Would you like to know why? Because I don’t want her to grow up believing that Autism is something she has to overcome or that she has to try to cover up in order to make other people feel more comfortable. She should never have to feel like she has to overcome herself or something that is such a major part of what makes her who she is at her core. Her pride in who she is should be empowering for her.

I see the discomfort people feel when they see my cane, see my pain, and they don’t know what to say. I see it in the faces of people who haven’t seen me in a long time and see me now, or those who just can’t get used to seeing me with the cane. That used to make me feel bad, and as if I had to apologize for it. Then I realized that I shouldn’t have to apologize for having a disability. The discomfort of others regarding my disability or them realizing my daughter has a disability isn’t my problem to work out. It’s up to them to figure out how to accept it and make it part of their reality. Maybe I’m not entirely comfortable with my own disabilities, and that’s okay because I’m learning and it’s a process. I go back and forth between accepting it and not… but as someone who is a do-er I tend to lean towards accepting and moving along so that I can find the new path.

It starts in the classrooms, and I’m hoping that these inclusive classrooms are encouraging children to bring their acceptance and generosity of spirit home to their families. If that happens, their parents bring it to work and it spreads.

We’ve learned that neurology is diverse and that they don’t need, or want, a cure. I’ve heard the words come from Sweet Girl’s mouth herself. She just wants to be accepted for who she is.She embraces her Autism and wants to be accepted. That’s all any of my girls want regardless of their neurology. They are not weak nor incompetent. They are not damaged.

We just need a pool that we can ease into rather than having to jump into all at once.

They Don’t Want an Autism Cure – The Daily Beast.

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Tone It Down, Don't Feed the Fear

Please Do Not Feed The Fears

I’ve been meaning to post this one for a while, but you know how life gets in the way of that “publish” button.  So here it is… pushing “publish.”

We’ve come a long way, Baby.  A long, long way.  Supposedly, in 1975 only 1 in 5,000 children had Autism Spectrum Disorder.  By 1985 that number had doubled to 1 in 2,500.  No one noticed.  No one really knew what Autism Spectrum Disorder was quite yet, unless you count Rain Man (1988?) with Dustin Hoffman’s character, who the movie claimed was an autistic savant.  Oh, Rain Man.  That movie is really a bane to ASD since the Rain Man‘s character was based on Kim Peek who had Megasavant Syndrome, Macrochephaly, and FG Syndrome but did NOT have Autism Spectrum Disorder.  The movie tried to put a positive view on ASD and bring attention to the disorder, trying to help dispel the stigma of ASD and that part is good… but it also gave the impression that savantism is typical for autists and it’s just… well… not.  Dustin Hoffman’s portrayal of autism was simply inaccurate, especially when taking into account that the character was based on a real man.  Then when people who know very little about autism except what they think they’ve learned from the movie Rain Man find out that my Sweet Girl is autistic they’re surprised because she’s “not like Rain Man.”  I can’t tell you how much restraint it takes to keep from growling and snarling,

“BUT THE REAL RAIN MAN WASN’T AUTISTIC! GOOGLE KIM PEEK!”

Ahem.  Sorry, I do that sometimes.  I didn’t mean to wander.

When my Sweet Girl was first diagnosed, the Autism Numbers were “1 in 166 children are on the Autism Spectrum.”  That was 2004-ish.  In 2007 the numbers appeared to shrink to 1/150 and people started to feel uneasy.  In 2009 the numbers appeared to shrink again to 1/110 and panic was clearly settling in and vaccine denialism started to become a real epidemic.  Then in 2012 the CDC released new numbers… 1/88 and people lost their fucking minds.  Jenny McCarthy became someone to revere and even though the completely-discredited-by-multiple-actual-real-unaffiliated-with-pharma-scientists-who-also-proved-during-investigations-that-he-hoaxed-results-and-original-faked-study-and-article-in-The-Lancet-was-retracted Andrew Wakefield lost his license as a doctor and is not allowed to practice medicine, he’s still be touted as a reliable source regarding vaccinations and Autism Spectrum Disorder.

The CDC recently put out new numbers that one in 68 children are estimated to be on the Autism Spectrum.  Every time this number changes, people panic.  People want to find the CAUSE, the BLAME, the REASON for this TRAGIC EPIDEMIC!!!!!!!!  Because of course we have to figure this out and PUT A STOP TO IT so that NO ONE ELSE HAS TO SUFFER!!!!  We have to SAVE THE CHILDREN!!!!  WE NEED A CURE!!!!! WE NEED TO FIGHT! AUTISM!

Right? I mean… think about this.

Can you tell me what’s going on that paragraph? What do those words imply? Can you figure out what’s wrong with the language in there that I see every single day from people who are suckered into vaccination denialism and Autism Speaks Rhetoric Disorder?  The fatalistic language.  Can you imagine being a child of a parent that’s using that language? There are many adults that have or had parents that used all of that fatalistic and negative language that make it sound as if Autism is a disease that needs to be stamped out, that Autism is damage and therefore YOU are damaged?  Can you imagine growing up knowing that’s how your parents feel? It’s common language coming from the parental community.  Who is suffering? The autistic children? The autistic adults? Who asked the autists if they were suffering? Oh wait… maybe it’s the parents who are suffering and shouldn’t be because they didn’t ask to be parents of autistic children.  Why does there have to be someone to blame? What’s the tragedy? What needs to be cured when Autism isn’t a disease? Why are we “fighting” Autism? This isn’t a war and we aren’t fighting a thing… we would be fighting PEOPLE.  Autism isn’t separate from our children or teens or adults.  They ARE Autistic.  Autism isn’t a label.  It actually is a state of being, a state of the brain, a state of functioning that can’t be turned off.

All of that language is affirming only to parents who want to continue feeling victimized… but don’t realize that Autism hasn’t victimized them nor has it victimized their children.  Autism Speaks did that to them.

We have to take a hard look at the Autism Speak induced language that is used.  Even their very own informationals are anxiety-inducing. This is THEIR image… I didn’t futz around with this:

COST TO SOCIETY via Autism Speaks

“The Cost Of Autism.”  Every letter in that image is capitalized.  They really want to get their point across in this Autism Speaks informational image that every single autistic individual is a costly endeavor not only for their poor, undeserving-of-being-afflicted-with-an-autistic-child parents, a monetary burden, but they’re costly and a burden to society.  The COST OF AUTISM IS A COST TO SOCIETY!  Cost = Burden.  Hell they even put a dollar value on how much a burden our autistic children are.  It can’t be much more obvious than that.  It’s obvious with every single informational that Autism Speaks puts out.  It’s obvious with what they do with their money and who they allow on their boards and who they allow to make their decisions about what “should” happen to autists.  They are burdens that need to be lifted, and to do that we need to “research” to find out what caused the reason for them being a burden so that we can cure the reason.  Except there isn’t a cure.  It’s not a disease.

I have an image that clearly depicts some facts about Autism Speaks that are disconcerting, and I apologize for the size but any smaller and you won’t be able to read it.

 

Please Do Not Donate To Autism Speaks

Know The Facts About Autism Speaks: Please Don’t Donate

 

Something else started to happen over the past few years since the “OMG! EPIDEMIC” numbers came out.  Backlash from adult autists.  Because you know, Autism not being an ILLNESS or a SICKNESS can’t be an epidemic.  That’s elementary.  Autistic adults have been lifting their voices in different ways (thank you internet!).  Autistic adults are writing books, articles, blogs, starting Facebook pages, doing research, contributing to society in a more public way than before.  Sharing FACTS about what it’s like to be autistic.  What it’s like to have the language that attempts to separate the ASD from the individual when in fact, trying to do that is dehumanizing.  Advice for parents of autistic children.  The best advice I ever heard in how to raise my daughter has been to read blogs and articles and books written by autists.

Do you know that I’ve seen online discussions between parents of autists, and adult autists who have told them straight out that the language they’re using, Autism Speaks induced language, makes them feel dehumanized and minimized and that it offends them and that it hurt them as children when they couldn’t express it, that those parents tell them “That’s not true because my child knows I love him/her.  You are not my child.  You’re wrong about the language.  The language I’m using is correct and I’ll keep using it until my child is able to tell me which language he/she prefers.”  They insist that Autism Speaks is wonderfully supportive and brings positive attention and awareness to Autism.

Except it doesn’t.  The attention it brings is negative, and none of the information is from the autistic viewpoint.  It fosters the initial stressful, anxious, mourning reaction that we parents feel when we hear the diagnosis that our child has ASD and related diagnoses.  Those are instinctive feelings when we feel guilt and worry because we know that not only are we as parents in for a rocky road that we weren’t prepared for as parents, but our children aren’t in for as smooth of a path as we imagined before they were born or conceived.  We mourn the loss of the life we imagined, the perfect life that wasn’t going to be perfect anyway, but instead of adjusting the same way other parents that have children with neurological and/or physical disorders and/or genetic disorders we get stuck in an emotional quagmire because when we look for support groups and resources just like every other disorder out there, we see Autism Speaks in our search results first.  They’re highly rated and hey, TV networks promote them.  Trusted magazines and specialists, doctors, local stores, national stores, national and worldwide companies promote them and donate to them.  They even offer special products during Autism month so that a portion of those sales go specifically to Autism Speaks! As a parent just starting out trying to figure out the new normal, it can take a while to figure out that they’re really not legit.  They’re really a parental support group, promoting the sorry-for-yourself parental support by endorsing the Autism Is A Tragedy That We Need To Cure And Prevent mode of thinking.

They don’t promote acceptance.  Acceptance is what is needed, desperately.  It’s needed for the sake of holding families together and for the sake of the parents’ sanity and for the sake of the autistic individual most of all.  We don’t want any more generations of autists growing up thinking that they’re Less Than.  As Temple Grandin wrote, Different Not Less.  That means EQUAL.  It doesn’t mean that ASD isn’t still a disorder.  Someone that has Down’s Syndrome or Bipolar Disorder or Diabetes I or Dementia or Fibromyalgia or is Deaf is Different Not Less, they are EQUAL, while still maintaining that their diagnoses are very real and shouldn’t be minimized.  Acceptance is key.  And Autism Speaks is not accepting of Autism at all… because the implication of their rhetoric means that the research they’re supposedly doing and funding would be to eradicate Autism.  Detect Autism before babies are born is one goal.  Can you imagine the implications of that?

No one can live in that constant state of anxiety and fear.  I’m not talking about we parents.

I don’t have a great segue into this next bit, so here we go.

What does this new number released from the CDC actually mean? What does 1/68 mean?  This is a great blog that explains it but the main thing I want you to get out of this blog entry at the Thinking Person’s Guide to Autism is “Don’t panic… Tone it down.”    So click on this here:

Thinking Person’s Guide to Autism: Keep Calm and Think Critically: The CDC’s 1 in 68 Autism Numbers.

 

There’s another problem.  The CDC sucks donkey balls not only at obtaining accurate ASD numbers across the country (honestly the sampling referred to in the article is ridiculous) for children, but it’s nearly non-existent for adult autists.  That means that it appears as if with the currents statistics that there’s an increase in ASD rates and that there are far more children with ASD right now in the U.S. than there are adults with ASD.  The reason this is important is that if they did that, they would likely see that the rates of ASD have been stable and are equal between children and adults.

Want to see something really cool? I mean really, really cool.  The UK did exactly that.  When they say 700,000 people ie. 1/100 of the population they mean children and adults.  This is a really Big Deal.

 

How many people in the UK have autism? Click here

Around 700,000 people may have autism, or more than 1 in 100 in the population.

There is no register or exact count kept. Any information about the possible number of people with autism in the community must be based on epidemiological surveys (ie studies of distinct and identifiable populations).

The latest prevalence studies of autism indicate that 1.1% of the population in the UK may have autism. This means that over 695,000 people in the UK may have autism, an estimate derived from the 1.1% prevalence rate applied to the 2011 UK census figures.

The prevalence rate is based on two relatively recent studies, one of children and the other of adults. The prevalence study of children, (Baird G. et al., 2006) looked at a population in the South Thames area. The study of adults was published in two parts, Brugha et al (2009), and The NHS Information Centre, Community and Mental Health Team, Brugha et al (2012). This is the only known prevalence study to have been done of an adult population.

(click on the link in the subject line of the article to see much more from the article)

 

I’m trying to bring all of these thoughts into one cohesive “Ah Ha” for anyone reading this.  I know I’m not reading as being very linear today.  Blame the Fibro Fog.  All right.  Here’s what all of this means to me in my heart:

My Sweet Girl is 9 1/2 years old now.  Since she was diagnosed so many years ago in preschool, she has come a long way in so many areas and I’m so very proud of her.  Early on I became uncomfortable with Autism Speaks and couldn’t put my finger on it.  I prayed on it.  I think  I blogged about it. It was a huge turning point for me because that’s when it stopped being about me and more about her.  I started to ignore Autism Speaks and their language, and I sought out blogs and support groups run by autists where I learned about their dislike of Autism Speaks and certain other groups.  I continued my education about Autism and the related issues that my Sweet Girl has, and let her know that I don’t want her to change.  I want to help her learn to cope and get an education so that she can learn how to get around in a world that wasn’t made with people like her in mind.  We use positive language regarding ASD, and we don’t keep it a secret from her.  She has a great IEP team at school, and she attends the meetings now.  If she chooses not to attend, I bring a list with her concerns and wishes on them and her team takes it all seriously.  They’ve actually made positive changes due to what she wants and it’s helped her.

Since making these wide sweeping changes in how I think, it’s changed how I advocate and treat her.  She’s better able to self-advocate.  She’s proud of her ASD and values it.  This isn’t to say that there aren’t incredibly difficult, downright miserable days. moments, hours, but the positive have been outweighing the negative.  We’ve both matured.  Her sisters are her advocates.  Her CLASSMATES are her advocates and while they know there’s something a little different about her, they don’t really know.  Her teacher told me recently that all of the girls and most of the boys (this is the first year boys are involved, eek!) are very protective of her and they all adore her.  They ALL notice if she’s not participating in social activities so they ALL encourage her and include her in everything.  If her feelings get hurt they all do their best to explain situations to her, and if she hurts someone’s feelings they explain to her why their feelings were hurt.  I’ve never seen that in 5th grade classrooms.  Her teacher has never seen this.  The children in this class are so genuine with her, I’ve seen it and it fills my heart.

The social stuff is still hard.  That’s ok.  The need for perfectionism is hard.  That’s ok.  The intense passion over certain subjects can be difficult.  That’s ok.  The meltdowns, the sensory processing issues, the eating issues, it’s all ok.  We’re working with it.  We’re teaching her and disciplining her, just in a slightly different (not less, but equal) way than other children.  I’m learning different approaches and language that might be useful when disciplining her and even how to approach her during the escalation of a meltdown (not a tantrum) and teaching her how to identify when she’s about to have one.  We’re teaching her that it’s ok to “not speak” or “not make eye contact.”  We’ve taught all of our girls that they have the right to refrain from giving permission to having anyone touch them… whether it’s a kiss on the forehead or a gentle hug or a touch on the cheek… with thanks to sensory processing disorder.  Who knew?  We’ve been able to find alternatives to an immediate hello, an immediate welcome hug or kiss, with a finger wiggle that says ‘Hello.’  Because you know, Autism or not, you still should be polite when it’s possible.  Reminders of manners still occur, but when she’s unable to say hello or be courteous to society standards or family standards I happily stand up for her without apology.  I know that she’ll come back later to say hello on her own terms in her own way.  Because I gave her that permission while still trying to teach her Society’s Way.

Since making these changes in how I think, my own stress about her ASD has reduced dramatically.  Do I still feel anxiety occasionally? Yes.  The biggest difference is that I don’t wish things were different for her or for me or our family.  I ACCEPT her Autism completely, even in the midst of the worst of her meltdowns.  As hard as those meltdowns are for me to get through with her; as scary as the meltdowns can be for her sisters; as disconcerting a they can be if they occur in public with people staring; I know that the meltdowns and the challenges and the difficulties are hardest for her to get through.  Sweet Girl is the one experiencing the sensory explosions, the emotional upsets, the takeover of her brain and body.  I see the panic that occurs when she realizes she can’t control it but wants to… and that’s the moment she accepts my help.  I let her experience what she needs to experience before that.  I let the fire burn what needs to burn before I enter that building.  I pick my moment.  I speak low, gently, and offer sensory input of her choice.  I offer a different location that’s quiet and unoccupied and safe.  I let her stim to her heart’s desire in her safe place if she needs it.  This isn’t easy.  I’m not always patient.  I’m not always good at this.  What gets me through enough to help is knowing that she’s not doing it on purpose, she’s not enjoying it, and those moments are the rare cost of the rest of her amazingness.  I don’t use the word amazing very often.  I don’t want it to lose meaning.

Since my own anxiety has reduced, so has hers.  She’s been more independent and is more willing to try doing new things.  I speak to her with respect and assume that she understands what I’m saying until she makes it clear that she doesn’t.  I ask her if she understands or needs me to “say it a different way.”  I respect her boundaries, although sometimes I forget.  She has a lot of rules, you know.  😉  She knows I try.  Instead of smothering her with hugs and kisses when I feel the urge, I tell her that I want to hug her and kiss her but won’t because I’m respecting her… and she smiles.  Sometimes she’ll tilt her head toward me so I can kiss the top of her hair where she won’t feel the kiss.  Sometimes she offers a spontaneous hug.  Sometimes… rarely… if I say to her, “I love you, sweet girl,” she says, “I love you” back.

Sometimes she can go from being Miss Grumpyface who’s ready to move out and find a new family after a meltdown to sitting with me for a snuggle and asking me to help her create a recipe for a new idea she has.

Positivity.  Positive advocacy.  Allowing her to self-advocate.  Being the parent she needs and wants.  ACCEPTING and loving who she is.  There’s no mourning over Autism in this house.

 

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There are several places I love to visit for support:

The Thinking Person’s Guide to Autism
Diary of a Mom
Autism Women’s Network
ThAutcast

I know I’m missing some, but those will get you started.

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Photo from GabeZimmer.com

Tongue Tied

My eldest is watching some show about a boy band, and there was a song with a catchy tune.  Gracie was half-listening while watching her little sister play a video game.  All of a sudden she comes into the living room paying more attention to the song with a horrified look on her face.

“It would not be good to be tongue tied!”

“What are you talking about, honey?”

“Having your tongue tied would hurt! It would be BAD!”

I realized that she had a mental image of someone’s tongue being tied in knots or something similar.  Maybe it was tied like a bow on a shoe.  Still, I had trouble hiding the slight smile on my face because she had misinterpreted the phrase but mainly because I was imagining what I knew she was imagining.  Then suddenly we were both giggling.  After a few minutes she was puttering in the kitchen making a snack and I could hear her giggling.

When she came back into the living room I explained what being tongue tied meant according to the song.

“So honey, when someone says they’re ‘tongue tied’ it’s a saying.”

“Oh no.”

“Yes.  It means that they’re having trouble saying what they really want to say.  Like in the song the boy wanted to tell the girl that he really likes her a lot and maybe loves her but she makes him nervous so when the words come out of this mouth they come out jumbled and garbled.  Tongue tied.”

::eye roll::

When I showed her the photo I’m using for this entry she smirked.

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Gracie had a great night last night.  She was really internally motivated to do not only her reading homework, but the follow up writing.  Then she did some math on the Kindle Fire HD apps for an HOUR and mixed it up with the levels of difficulty and then she did the response.  She went between two different grade level apps (I’ll have to dig up the names of the apps to share them later).  Of course she started with the hard levels, then moved down and asked permission for each lower level but seriously? They’re all hard.  She was able to do many of the problems on each level.  She did a lot of the reading apps too and spent a lot of time putting words in alphabetical order and laughed at a lot of the words.  We talked about the words in the lists and she would tell me what they meant, and asked what the others meant.

 

 

 

She wanted to do it on the Kindle rather than try what was sent home to me first, and since she was so willing to do it for so long I was just so happy she was doing MATH! that I didn’t argue with her.  I want her to see math as fun and if this is how it progresses, then I want her to choose what works.  I’m just so happy right now that I’m tearing up.  I mean… Gracie willingly did math for an hour and ASKED TO DO IT and I had to stop her because she went past her bedtime.

 

 

 

If I ever questioned going back to work, just being able to afford buying that tablet made it completely worth it so that my girl could play with math and have fun.  With math.  MATH.  This is really huge for us.   This girl does everything possible to avoid math unless she’s counting out money at the store for a My Annoying Little Pony.  Or she’s counting her cookie.

 

 

 

Of course now she’s asking for an iPad of her very own.

 

 

 

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This morning after CCD, it was easy for me to tell when my husband got home with the girls.  I was sipping my coffee in the living room and the front window was open.  I heard a car pull up, but wasn’t sure at first if it was a neighbor.  Then I heard screeching and shouting and unintelligible insults.  I heard The Mister grunt in pain.  One of the girls lashed out at him.

Princess Number One snuggled on the couch, put her earphones on, and escaped into some music.

Princesses Two and Three continued screeching and I could hear their echoes throughout the neighborhood.  They came pounding up the stairs into the house with The Mister ordering one of them to their room.  I think it was Number Three.  It was confusing.  I just know one of them kicked him.

It was determined that there was much brattiness from the time they got in the car to be picked up and the rest is history.   Gracie apparently wanted a pony.  My Little Pain In The Freaking Ass Pony, of course.  She wouldn’t accept that “not until your birthday” was the response.  I decided that the arguing over it was done, and explained to her that she got her answer and if she wasn’t happy with it that was all right but her behavior and language were not.  She became more disrespectful to The Mister and it was her turn to sit on the stairs for a time out since Number Three was already in their room.

Yeah, she locked herself in the bathroom.  We just waited her out.

She ended up in her room on her own, and I could hear the two of them plotting against me.  When their time out was over, I just let them stay there to bond since most of their fighting earlier was with each other.  When Gracie came downstairs repeatedly to insult me, I explained that her words were hurtful and that’s why she was put in time out in the first place.  After an hour, I told her that she had hurt my feelings and if she felt badly she needed to think about the words she had been using, think the words she planned to use before they came out of her mouth, and change her attitude.  I wouldn’t be letting her treat me badly or get rewarded for it.  She put herself back upstairs, grumbling the whole time about how mean I was to say such terrible things to her.

When it came lunch time, I kicked the three of the girls out of the house to get fresh air.  Gracie came back in after a while because the sun was too bright.  She kept finding things to talk to me about and inform me about.  I took that as reaching out, since earlier her communication was mainly shouting and screeching and insults.  I let her help me make dinner… pasta with homemade sauce.  I let her help me make dessert too… apple crisp.

And then something completely unexpected happened.  I was in the kitchen stirring the pasta in the pot, and I heard Gracie on the stairs calling to me.

“I am sorry.  I am sorry for the words I said.  I was unkind.  I said hurtful things.  I am sorry for hurting your feelings.  I love you.  Please forgive me.”

I didn’t script one word of that for her, and no one else did either.  She wouldn’t let me hug her, but she let me come to her and kiss her hand.

“Thank you, sweetheart, for the most beautiful apology I ever heard.  I am so very proud of you.  Will you come taste test the pasta?”

And so she did.  I let her have the first serving of pasta and later the first serving of apple crisp.

Aw, man… I’m crying again.   I’m crying because she gets it.

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Severe Autism to the merest touch of Autism ie. Broad Autism Phenotype

Severe Autism to the merest touch of Autism ie. Broad Autism Phenotype

I’ve never kept it a secret from my daughter that she has Autism.  When she cried because “her brain doesn’t work the way she wants it to” sometimes; when she started to notice that some things are easier for her sisters and cousins and friends than for her; when she started to notice that her little sister was taking on a care-taking role with her very early on and was reaching many milestones at the same time or earlier; when she noticed that not all of the children in her classes required pull out time or a paraprofessional (she prefers the term teacher’s aid)… I didn’t hide the reason why.  Even from a young age she was begging me for answers; even when she had trouble formulating sentences, she needed to know why.

I have always presented it in a very positive way for her in spite of her difficulties.  I have explained why there are certain foods she shouldn’t have (it’s easier for her to think and concentrate and makes her feelings feel better).  I have explained that her Autism helps her think differently and creatively, and that there are very wonderful ways of thinking and very wonderful ideas that she has that I never would have imagined because my brain is “only typical” compared to hers.  I let her watch the movie Temple Grandin.  She connected with it.

We have more good days than bad, lately, but I think it’s because I don’t hyperfocus on what she can’t do anymore.  I fully accept her Autism, which means I accept HER.  She used to tell me that she hated her brain and her Autism and wanted to be just like her sisters and friends but now? She wants to be herself.  I saw her the night before school at the school picnic and a gaggle of her classmates came in.  This huge group of 5th grade girls saw Gracie and they all squealed, “GRACIE! YOU’RE HERE!”  She smiled and waved and said hi to them in her sweet, gentle way and I couldn’t help but get teary eyed.  The girls surrounded her and they all took turns asking her permission for a hug, telling her they missed her.  She actually gave them all permission for hugs.  She was in her glory.

Oh fluff, I’m crying right now retelling that story.

Don’t get wrong here.  We have some really bad moments.  Thankfully some of the “bad” times are just momentary and I’m thankful.  She’s having an easier time lately getting herself under control.  I think it scares her when she can’t control it.  We have bad half days.  We have bad days.  Weeks.  Months.  But my darling girl… she accepts herself and knowing what’s going on in her own brain helps her self-correct.  She knows to accept help when I offer… and I know to back off if she refuses.  She has learned to figure out her own warning signs and ask for help in holding them off.  She asks to help satisfy her sensory diet.  I was never sure she would get to that point.

She is accepting of herself, and realizes that her Autism is part of what makes her such a special young lady.  Being autistic is just like saying her hair is blonde, her eyes are blue, she loves strawberries, and she’s lactose intolerant.  If only others were so accepting and unafraid.  When the majority of autistics are not severe, when the spectrum is so wide that the majority isn’t even noticeable enough to require diagnosis, I wonder why so many are fearful and hateful and choose to remain uneducated.

I see her and other children she’s grown up around in school that have Autism and I see little people.  Future artists and engineers and technicians and actors.  I see the gift that they are.  I don’t see brain injuries  nor a disease because they’re not injured or diseased.  They are gifts.  They are treasures.  They have a disorder because they think differently in a world where most people don’t think the same way they do.  Oh well.  We can’t make the world change for them, but we can’t expect them to change for the world either.  Instead, I choose to prepare my daughter to cope with that world without having to change who she is.

It took me a long, long time to view my daughter’s Classic Autism, high functioning as it may be for her (and let’s face it, our family unit), as a gift.  It was difficult to see an end to the days that were endless struggles over everything.  I mean… everything.  When she didn’t know what was wrong and I didn’t know how to fix it.  Then I stopped looking for “why” it happened and I stopped asking God.  His answer to me was, “Why not.”  I had to be the mother she needs, and not the mother I wanted to be.   I’m a control freak and I had to let go.  I had to accept that things can be untidy and still turn out all right.  I had to trust in “not knowing” and even though I still worry and control what I can, it’s getting a little easier to let go.

Let go and let God.  But also, let Gracie.

And then today, I stumbled on this and it made me cry.  A young woman attending college and happens to have Autism.

My name is Shaina Barnett. I am 22 years old and a student at a community college in my area with high-functioning autism. I was diagnosed when I was only a toddler, in 1994. The funny thing was, I wasn’t truly aware of being different until I started asking myself why I could not somehow click into the crowd of kids in my classes. I was about 8 years old or so when my mother gave me the talk of autism. She said it was a gift I was given from God and with it, if used correctly, I can do wonders, move mountains, maybe even change the world. Of course, at the time I did not believe her. I just wanted to be able to play with the other children and share their experiences without being ridiculed or told of my faults. Middle school was such a nightmare. Other students knew I was different, but they used it as a weapon to break me. They pulled cruel pranks on me and called me hurtful names. Being a teenager at the time is hard enough, even without having autism. My safe haven was drawing comics, writing stories and poetry, and singing. Years went by and I felt I began to grow and blossom into a young lady. But I could not have done it without my high school mentor who was also my beloved homeroom teacher. We still remain very close. Being in and out of social skills programs gave me tools to be able to talk among my peers, however, I advanced past the expected curriculum. When I attended a Jewish summer camp, it greatly build my self-esteem and helped me grow to be the adult I am. I’m proud to have such positive experiences. I thank my superhero of a mom for being my support and my rock. She was right all along. I don’t think of my autism as a curse; if anything, it is my superpower, a power that not even DC Comics or Stan Lee could come up with. I have been BLESSED.

Shaina Barnett
Van Nuys, CA

SOURCE:  Autism: The Unexpected Journey (click here)

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English: Common signs and symptoms of fibromya...

English: Common signs and symptoms of fibromyalgia. References fibromyalgia-symptoms.org (Photo credit: Wikipedia)

I finally got my doctor to test my thyroid properly.  She did all six panels after the nurse practitioner explained to her why she should.  That’s a whole ‘nother post, but I’ll spare you.  I got the results and it came back as “normal.”  I also had her check for a systemic candida overgrowth, but that came back as “normal” too.  That means that neither of those things are causing any Fibromyalgia symptoms.

A full thyroid panel would be: TSH, T4, T3, Free T4 ,  Free T3, Reverse T3.

[EDITED FOR DETAIL:

The results are discouraging since they’re not what I was expecting, but I also realize that it helps narrow things down.  I’m starting to feel more and more pushed towards having to figure out if I’m sensitive to gluten or not.  A gluten sensitivity can exacerbate my Fibro symptoms, so it’s looking like it’s time to try an elimination diet regarding gluten.  I had success eliminating meat and becoming vegetarian and that that should be encouraging, right?

Here’s another interesting tidbit… I’ve always been aware of this, but a gluten sensitivity can make Autism worse or mimic symptoms of Autism.  When Gracie was very small we tried an elimination diet of gluten that didn’t seem to work but if I’m going to attempt to go gluten-free then I’m going to try to get her to go gluten-free as well.  She gets the so-called chicken skin on the backs of her arms and it bothers her a lot because she thinks it’s ugly.  Then she tries to scrape the bumps off and there’s a scab.

I brought up the idea to my daughters.  Gracie acted as if I said nothing, so there’s nothing new there.  She just wants cake.  As long as she can have cake that tastes like cake I think she’ll be fine.  Juliana thinks it means she’ll never be able to socialize at school lunch or have sandwiches that taste good ever again.  She’s also worried about pasta.  And crackers.  I’d like for her to try it willingly due to her ADHD, but she’s almost 13.  I need her cooperation.  Anna? She thinks it’s unhealthy since we have whole-wheat-everything.  I tried to explain that there are alternatives that are healthy.  I might have to get sneaky and creative.  🙂  That’s sort of the definition of cooking as a parent, though, so now I just have to learn the language of gluten ingredients in the ingredient labels and find some tasty recipes for special occasions.

I have to give it a minimum of three to six months.  Longer if possible.  I’ve read that it can take months to years to rid the body of gluten.  I don’t consume a lot of it in the first place, but that’s a little disconcerting.  I don’t know a lot about going completely gluten-free yet.  I do know that it can be very involved.  Crossing my fingers.

I’m nervous.

[EDITED:  Not gonna do it.  Gluten free just isn’t really an option, at least not right now.  I don’t think I buy into the whole thing for either myself or my daughter/s anyway since we don’t show true symptoms of gluten intolerance or insensitivity.

And also, for what it’s worth, I’m not 100% certain that my doctor was 100% truthful about the Candida results or thyroid results so when I see my rheumatologist for my first appointment at the end of September I’ll be sure to ask her to go over those tests.]

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