Everybody and their Frog: Parenting Autistic Children with Love and Acceptance

Screen shot 2014-04-13 at 8.10.42 PMParenting Autistic Children with Love and Acceptance has just published the first issue of a wonderful new magazine, and everybody is reading it!!

And it is not expensive.

In fact it is free, and you can get a copy to peruse and enjoy and share with others right here.

The magazine is an informative publication and a much-needed resource: “In this issue, you will read a lot about what acceptance really means. It is intentional, it is a learning process for most of us, and it is absolutely worth it because our Autistic children deserve nothing less.”

Screen shot 2014-04-13 at 8.48.03 PM

Image from Parenting Autistic Children with Love and Acceptance Magazine

And c’mon… everybody and their Frog is reading it!!

KermitReadsPACLAMAG.jpgA final and far more serious note:

It has been announced that Sesame Street intends to partner with Autism Speaks – which is definitely not a positive move for reducing stigma for Autistic people. Please sign and share this petition - that urges Sesame Street to reconsider this partnership, in favour of an organization that is inclusive of Autistic people and exclusive of negative stigma.

AS tells my child, my students and their families that Autistic people are a burden, an epidemic, and a tragedy. I hope Sesame Street will look deeper… because this needs to be ended. I hope they will shift their partnership to an organization that includes Autistic people and supports them and their families with acceptance, and a strength-based perspective. It is important they end their partnership with Autism Speaks, so that they continue to support and celebrate the diversity that has always been a hallmark of acceptance on Sesame Street.

_________________________________________________________ 30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism (2014)

Posted in acceptance, Advocacy, advocate, Autism, Autistic, Kermit the Frog, Neurodiversity, self-advocacy | Tagged , , , , , , , , , , , , , , | 5 Comments

On the Streets of Philadelphia

This happened in Philadelphia…

In solidarity with the AutismHWY.com Chalk Festival…

Chalkfestival.jpgI may or may not have had accomplices…

(Okay – well – I did… but I am protecting their identity…)

AutismHWY.com

AutismHWY.com

_________________________________________________________ 30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism (2014)

 

 

Posted in acceptance, Autism | Tagged , , , | 2 Comments

My Plan B is… Stick to Plan A!!

This past week was the marking of the third year of this blog… no fanfare needed… because there is so much work that needs to be done.

And I am busy – so busy – with working at my wonderful job as a special education teacher – with parenting my spectacular son, H (now 15) and my fabulous daughter, Nika (now almost 21 and winding up her 3rd year of university).

I am busy with connecting and hanging out with Craig the Amazing – and so appreciative of this man’s endless support of my sometimes harebrained schemes – and his patience and encouragement and faith while I work to make lofty goals and dreams a reality. And… if that wasn’t enough… he laughs at my jokes! So yes, I am blessed to have the prefect husband!

This week I am also busy preparing my presentation as a part of the Autism Strand on Supporting Transition to Adulthood for the CEC Conference (Council for Exceptional Children) in Philadelphia on April 9th – 12th.  So – once again I find myself with much too much to do – but honestly, I wouldn’t want it any other way!

When I consider this journey and my own work to bring about change,  I am also grateful to the community of Autistic people and the wider neurodivergent and disability community, and the educators and parents and others who are working to support them.

And this has me considering activism – because there are these moments that are incredible highs: there are some shining moments – some real wins as a community.

And there are also real lows: times when it is not glamorous – or exciting – when it feels like it is one step forward and two steps back. There are times when I am discouraged – and I wonder at the loftiness of these goals to build support and acceptance for neurodiversity and well – to make the world a better place.

There are moments when I question if I am jousting at windmills Quixote-style and I wonder if this work is fruitless…

I think there may be times when we all feel that way…

But what I am coming to see is that it is the maintaining of the goal through those doldrumesque moments the clinging to a vision that things can be different that is critical in these times.

This is not hard when we are riding the wave of a new plan – or reveling in the high of a recent success…

But change is slow and activism is not easy… and it is important to consider how we maintain ourselves in the non-glamorous slogging of hard work and the seemingly endless perseverance that is required.

I will continue to look for ways to nourish and take care of myself and my friends and family and those within our community as we continue on. I am grateful to those who are encouraging and looking out for me (and others) as well, like my friend Corbett O’Toole, who would remind us all that activism alone is really hard and activism with others makes it so much more fun and supportive and silly and sing-y and… well, sustainable…

My Plan A is to remember that Acceptance is an action word and that activism is hard work… and that even little steps are a part of maintaining the trajectory of change.

My Plan B is to stick to Plan A, because I am committed to Social Justice and the future of my son.

And frankly… there is no Plan B

PlanB.jpg_________________________________________________________ 30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism (2014)

Posted in acceptance, Activist, Advocacy, advocate, Autism, Boycott Autism Speaks, diversity, Neurodiversity, Rail Against Stigma, social justice, Special Education | Tagged , , , , , , , | 6 Comments

Uncomfortable… So what?!?

30-days-of-autism-and-einstein-quoteI have been thinking about how often we are uncomfortable with feeling uncomfortable (which I cannot help but note is ironically circular in its very definition), and that I have observed and experienced the inherently powerful and positive opportunity that exists in how we choose to respond to our discomfort.

When considering this from a cognitive perspective, uncomfortable is often the response to the metaphorical wedge of new ideas, or a perspective that differs from what we have held as truth. These feelings of discomfort – sometimes referred to as cognitive dissonance – can function as a barometer of sorts, indicating that we need to pay attention and seek out more information, and re-evaluate what we considered to be our truth.

When I am questioning my assumptions and broadening my perceptions to be inclusive of the experience of others, when I am curious and listening, then I am adjusting my subjective reality… and that is when growth and change happens. Digging-in to these moments has at times shaken me to my core, but it has also resulted in some of my deepest and most profound learning and understanding.

That uncomfortable feeling of cognitive dissonance acts as the indicator that points me to something I need to be considering. If I am responsive to this, it denotes something important and asserts: “pay attention to this – this doesn’t align.”  I will continue to resist the seemingly natural urge to respond to discomforting signifiers with avoidance or denial… and work instead to be willing to deeply question my assumptions and my stance.

It may not be comfortable… and working to be comfortable with discomfort may not be easy, but so what?!? I will continue to lean in…

Photo: L. Kelley: Thirty Days of Autism

Photo: L. Kelley: Thirty Days of Autism

_________________________________________________________ 30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism (2014)

 

 

 

Posted in Autism, being wrong, discomfort avoidance, Handling Change, handling discomfort, listening, Loud Hands | Tagged , , , , , , | 4 Comments

Papa, the Shillelagh, and a head in the clouds….

As I was growing up, I recall my mother often seemed practically concerned about my fanciful ways and ideas, and my tendency to have my head somewhat ‘in the clouds.’ My mother might be considered a bit of a worrier, and she is also practical, highly organized, endlessly supportive, and the kind of person that everyone trusts instantly and talks to as though they have been friends for years.

I vividly remember my father quietly, perhaps even subversively, layering in his perspective: “Leah… it’s okay to have your head in the clouds… as long as your feet are on the ground…”

My reflections here are not meant as a comparison that one parent’s perspective was better or preferable to another, or that one of my parents was more supportive, as that is not the case. The reality though, is that my parents are two different people, who offer different perspectives, and with whom I have a completely different relationship. I am a mix of both of them… and I am grateful to them both as well.

But this post is about my father – Papa, to his grandchildren…

This man who would sometimes say, “Leah, come and sing for me…” and meant it.

When I was a child and young adult, my father cultivated my love of language and irony and wordplay. He challenged and nudged my cognitive process with philosophy, politics, ideals of social justice, and a multitude of theoretical frameworks. He encouraged the exploration and entertainment of possibility and he somehow paired this with an unspoken expectation that it was hard work that would lead to success in a way that never squelched the dreams.

I felt this as acceptance… and with it came an understanding and a certainty that my Dad completely trusted that my often fanciful, creative, and imaginative ways were something to be nurtured – not reined in.

I feel this still…

This same acceptance and understanding that I have always felt from my father, is embodied in what I observe in his relationship with H.

When H was little he used to climb on his Papa’s lap and run his hands over the sides of his face. He would say, “Papa, I like your cheeks… They are so soft… They are so comfy…”

My dad would melt…

In a way this is a metaphor for their relationship. Papa is comfy: he is a careful listener and a curious and keen observer. He is comfortable with H’s quietness as well as his boisterous side, the part that simply refuses to be contained. He will support a fanciful notion and give wings to lofty ideas, and at the same time he can ground a fear with solid reality and a few carefully chosen words.

He is deeply – deeply accepting.

And every time I see him interact with H, I glimpse that same caring, tenderness, understanding, and love that has been extended to me…

And I am deeply – deeply appreciative…

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Papa wowed H with the unexpected gift of his shillelagh! I love this photo that so perfectly captures the love and connection between these two.


Related post:
A conversation with my Dad: Buffers, Limits, and Approximating Perfection

_________________________________________________________ 30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism (2014)

Posted in acceptance, Autism, family, Father, Humour, language, Parent | Tagged , , , , , , , , , | 8 Comments

Liquid Man – A Poem of Acceptance #StopCombatingMe

#stopcombatingmeIf you follow my blog you will know my family lives in Vancouver, Canada – and it may appear that we are removed from what happens with bills and acts and legislation in the US – but the reality is – we are very much affected. Sometimes a struggle, like the fight for human rights and social justice, must by necessity transcend borders. This is one of those times. I wrote this poem for H and others…

Liquid Man

 

15

I see you perched on the edge

A balanced droplet

Reflecting back the whole world

Defying gravity

Rocking softly

Regrouping

With gently swayed rhythm 

Considering

Owning your body’s movements

Choosing curled still solitude

 

 

23

I see you sliding down a wall

The edge that keeps you

Gives solace

Defining your space

You say awkward

Some might accuse: flop

(they know not)

I see ownership of liquid beauty

You puddle on the floor

Relaxed fails as a descriptor

Your words are spinning

Weaving thoughts

Spinning

And I can hardly keep up

But the vision of your

Wall water self

Exploring concrete edges

That anchor

As your thoughts

go to places far and wide

The naturalness

The beauty in the authentic

The message in that move

Is nourishment

Joy

 

 

52

I see you reflected

And reflecting

And dazzling

Water in water

Connections

Ripples felt as you move

Flowing

Seamless

Sound and movement amplified

Emotions intensified

The Butterfly Effect

Transformative

Connected in the wake

Or the wave

The pebble in the pond

Affecting one other

We pool

Liquid

Reflected

Movement

 

 

15, 23, 52

I see the silent power of your liquid ways

Refusal to be contained

Stuffed down

Boxed in

Shaking off shame’s plea for a discrete mopping

Water protests, in all its liquid forms:

Drops, tears, puddles, pools, and oceans wide

To combat the stream is folly

It is to miss the moment of perfect stillness

Where the whole world is reflected

That convex bead

Tenuous balance held forever

In the present tense of poetry

Defiant

Destined to be triumphant

This is the power of persistence…

Rail against the rock

And honour yourself in all your watery forms

Leah Kelley, March 10, 2014

#stopcombatingmeThis post is part of the #StopCombatingMe Flashblog scheduled for March 18, 2014.  Please visit this site to find out about submissions and to view other participating posts.

You can find more information about this action and tell Congress to reform the Combating Autism Act or to let it expire.  Sign the petition and learn more here:  http://action.autisticadvocacy.org/p/dia/action3/common/public/?action_KEY=10412

_________________________________________________________ 30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism (2014)

Posted in acceptance, Activist, ASAN, Autism, Autism Poem, social justice | Tagged , , , , , , , | 5 Comments

Advocating: Love not Fear!

SidelightH.jpgH just shared with me:

“In Tales from the Darkside from 1983 – there is one episode where there is a monster in this boy’s room, and he advocates for himself and tells the monster ‘Hey this is my room’ and the monster backs off and the boy gets the power over his room.”

Then going deeper – he replays this part of the episode and explains some of the plot and dynamics as he sees he has caught my interest:

“Mom look – here the part where he advocates for himself. His dad is a real jerk. He thinks he should stop being 6 years old and be a man right now: he [the dad] thinks he has the right to do what he wants.”

Sensitive to my reluctance to watch scary stuff:

“Don’t worry, Mom, it’s not that scary – there is an octopus man under his bed and a buzz saw – but it is just his imagination… Here it comes. You have got to see how he advocates for himself.”

We watch together – and then move on to discuss the deeper aspects about how the boy in the segment advocates for his space and also with his father.

Hdonotlisten.jpgH is getting this stuff. He is understanding what it means to advocate for himself or others and he is developing an ever-stronger sense of his right to take a stand.

As parents we nurture this young man’s sense of self and his heart for social justice with our acceptance and love. Empowering my child in this way – requires a little bit of letting go.

Sometimes… actually… a lot of letting go.

And letting go can be scary… but it is important to understand that fear is mine… 

I have to be willing stop holding the reins tightly and give H room to make decisions. Giving up control. This is love…

Love. Not. Fear.

I am open to other ways of seeing and doing and I work to set aside my reading of tone – so that I hear the intended message.  This is not easy to do and it is sometimes a messy thing, particularly with a teenager… but I am supporting H in finding his voice. Sometimes this means I have to silence mine. This is love…

Love – not – fear!

Over a Thai dinner in Chicago, I told two friends that we had H enrolled in a Social Skills Group. (They almost sprayed their beverages at me…)

I waited a beat – then smirked and confessed: “It’s true he is hanging out and learning to play Magic the Gathering at a local collectables store. He is socializing there and connecting with others in a way that will help him find community.” HAtMagic2.jpg

We laughed… and then more seriously talked about how this represents the authentic honouring of H and his interests in a way that creates opportunity for growth… without stigma.  At times I have felt the pull and pressure to enroll my kid in therapies and interventions, but too often I have seen these done poorly. I have seen my own son (and others) anxious and shamed for not using strategies and skills people assume they should be using. I am working to offer information and strategies and opportunities to H in a way that does not make him feel like he is broken and needs to be fixed. This is love…

Love NOT fear

I want to support my son in building skills to help him navigate his way in a non Autistic world – but I want to balance this with the message that he doesn’t have to ‘pass’ or bury his authentic Autistic self. We are looking for opportunities for H to connect with others around his interests and supporting him in finding his people. This is love…

Love not fear…

I resist over-scheduling my kid… he needs time and space. I get that his interactions may look different from mine – and that this difference does not have some imposed hierarchical measure that implies my way is better. I value his way… This is love…

LOVE not fear…

I resist over-prompting… this shows my trust in his ability to work things out for himself and Craig and I are looking for opportunities to step back. This is not easy… This is love…

love not fear

I have trust in the Autistic community and the wonderful relationships I have developed with so many Autistic people. They generously share their perspectives and they shape my parenting and my actions as a parent and an educator… and as a human being. My appreciation is so deeply felt. This is love…

Love not fear ♥ SupportNeurodiversity.jpg 1507714_648047545241682_977488864_n

This post is part of the Love not Fear Flashblog scheduled for February 14, 2014.  Visit this site to view all of the participating posts. _________________________________________________________ 30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism (2014)

Posted in Advocacy, advocate, Autism, flashblog, letting go, Neurodiversity, social justice, Space and Pace | Tagged , , , , , , , | 12 Comments

Fear, Hate, and Exclusion: It’s time to silence Autism Speaks!

screen-shot-2011-06-18-at-11-34-40-amI will begin with the words of my son, H, when he was 13: “I am not a tragedy and autism is a part of who I am. Mom – autism means I think differently… and that is a good thing. Isn’t it?!?”

As a parent of an Autistic son, and as a Special Education Teacher, I believe in the importance of advocating for diversity, seeing children (and adults) from a strength-based perspective, and working to shape our society to be a better fit for those who experience the world differently.

I want my son (and my students as well) to be empowered to be a self-advocate. I want him to have pride in who he is this very day. I want to be focused on his strengths and the positive things he brings to the table – or to a relationship, the science fair, or even the local Lego contest.  Some of those positives may be because he has autism – or not – really I have no need to delineate this.

I realize that autism is a part of what makes my child who he is, but that it does not paint a complete picture. He cannot be separated from being Autistic – and I don’t want him to feel that he should, but neither does it completely define him. The thing is, however… the VERY IMPORTANT thing… is that I do not want him to feel shame! I do not want him to feel that he is less because he processes and responds to the world differently than non Autistic people – and I think that there is a real concern that this might be the case.

I see this young man work so hard to do the things that a non Autistic child can do intuitively. I understand that this doesn’t mean that a non Autistic child will not struggle, but that is not what this post is about. I also understand that there are some families who face enormous daily stresses and challenges with their Autistic children, and it is not my intention to diminish or underplay these challenges… but comparing children and their challenges is also not my intent.

It is important for us to shift attitudes in order to lift the burden and heaviness that shame can cause – and I want to prevent that shame or potential shame from scarring my vulnerable child… or yours…

The experience of being Autistic affects my child… it affects him deeply. But more than this – my response to him affects him as well. The responses, attitudes, and judgments of other children affect him, as do the responses of teachers, relatives, family friends, neighbours, and the attitudes and judgments of strangers…

…and the messages of big autism organizations

…and the responses of government!

For him negativity about autism is an attack upon his very being -  in that very moment – and likely resonating on some level and carried with him into his future. This is as much of a threat to my child as the schoolyard bully and I want others to consider how it could manifest his sense of himself as Autistic in a way that creates anxiety, pain, and a sense of inevitable failure.

I worry about the way that he was at times punished at school for his lack of social understanding and was given the message (even if perhaps it was only implied in the reaction of others) that he was bad. I worry about the lingering effects of that message on his development of a sense of self. I worry that my child may feel that he lacks worth – or that he is not good enough. I worry about the shame my child might feel, and I find myself observing H closely to try to measure and determine the depth of its effect.

I worry about the messages of the media proclaiming that autism is a curse, a burden, an epidemic, or a tragedy – and that my child hears and processes messages like these. I have to work hard to undermine the effects of this and loosen shame’s hold. This shame part really tears me down to my core… and sometimes I worry we do not have enough time – enough awareness – enough insight and understanding to mitigate the potential damage.

Part of the work we must do is to take a stand against organizations like Autism Speaks for spreading fear and hate and shame, and for actively silencing Autistic people like my son, like the students I teach, and like so many of my wonderful friends.

I am a fan of finding the middle ground, and of the process of compromise, but diplomacy does not have a place here.Screen shot 2013-11-14 at 6.02.38 PM We’re done with messages of fear, hate, and exclusion! It’s time to silence Autism Speaks!

If my goal is to raise my son to be a man who feels that his experience as an Autistic person is worth sharing and definitely worth listening to, and it is, then we must shift attitudes. It is this shift in attitudes, framed as an honouring combination of support and respect, that will result in a changed environment.  As a Special Education Teacher – an important part of my role is adapting curriculum and environments to honour the developmental strengths and stretches of individuals.

What I am saying is that in addition to supporting the development of people with strategies and supports to navigate their way, our goal is to adapt the environment to make it a better match, and remove potential barriers.  Sometimes this means changing our language, increasing response time, meeting sensory needs, supporting alternative forms of expression and communication, ensuring and protecting the space/pace/place to recharge, and a myriad of other things.

Much of my work as an educator is focused around working with other educators to increase their understanding of the experience of students who are autistic. In this way I (along with so many others) am working to build ramps: not ramps of wood or steel, but social and emotional ramps built of strategies and understanding.

In this context, we are working to shift the environment. As a society, we are moving toward a more general acceptance that this is expected, and we support these goals within the context of the classroom and the school.

However, Autistic children grow up to be Autistic adults, and we need to extend these attitudes of acceptance and support beyond the school, to build structures and frameworks in our workplaces and greater communities.

There is no middle ground here: the messages and actions of Autism Speaks, fueled with fear and stigma, are in direct opposition to these goals.

I want my son to make a statement like I shared at the opening of this post and be able to leave off the questioning tone.

I want to surround my child with positive messages…

about who already he is…

without changing one little thing…

and then move on from there…

and I invite you to do the same…

Note: Parts of this article were previously published on 30 Days of Autism under the titles: To the Committee on Oversight and Government Reform: Autism and Reframing  Tragedy (December 4, 2012) and  Autism Positivity… and the motivation to reframe “tragedy”  (April 25, 2012). It is my hope that in the near future the reworking of these messages will no longer be needed, and that they will be laid to rest and viewed as outdated artifacts of a no-longer-ableist society. 

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

©Leah Kelley, Thirty Days of Autism (2013)   

Posted in ableism, Autism, autism stigma, Autistic People Speaking, Educator, Neurodiversity, Parent, Special Education | Tagged , , , , , , , , , , , , , , , , , , , , , | 20 Comments

H’s Advocacy and The Teachers’ Response

Those of you who follow Thirty Days of Autism likely know that H co presented with me at the BCTELA Provincial Conference (BC Teachers of English Language Arts) this past weekend. You can read more about that here and here.

As anticipated, it was a fabulous experience!

H did a wonderful job sharing his presentation, and as also anticipated, he was proud to be presenting, but pretty much ready to bolt right after he clicked through his final slide.

I understand that response, and support H in responding to his needs. However this is the fifth time that H has presented, and though he would not be comfortable fielding questions, it seemed important that he stick around a little longer to hear some feedback from the teachers.

I’ll admit to having pushed him just a little bit here… but I think it was a stretch that will benefit him and support him in developing a greater understanding about the impact of the work he is doing.

Having H stay for a few minutes afterward gave the educators an opportunity to respond to him with appreciation for his message and know that the message was received.

They shared that they were impacted, which gave H first-hand information about the value of his work.

This too supports his advocacy, his sense of self, and his pride in his message.

There is value in the communication going both ways, and I had the sense that H was ready to handle sticking around to hear these positive messages:

You are appreciated!

Your perspective is important.

Thank you! This will help me understand my Autistic (and other) students better.

You are brave – I couldn’t talk to a group of teachers like this when I was your age.

It is good to understand and talk about what you need.

We are listening and you were heard!

H presenting to Educators at the BCTELA Conference (final slide of his presentation).

H presenting to Educators at the BCTELA Conference (final slide of his presentation).

The cycle of communication is not fully completed until we understand that the message has been received.

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

©Leah Kelley, Thirty Days of Autism (2013)   

Posted in acceptance, advocate, Autism, Autistic People Speaking, BC Teachers Federation, BCTELA 2013, BCTF, Dear Teacher: A letter from H, diversity, Educator, Laura Nagle, listening, Neurodiversity, self-advocacy, Speaking, Special Education, Teacher, Vectors of Autism | Tagged , , , , , , , , | 7 Comments

Relaxed and it is soo good: Meeting Sensory Needs…

P12408043It is interesting for me to consider H’s sensory needs and how these seem to have shifted and changed over time. In many ways his sensory processing differences are not as obvious in terms of needing accommodation as they once were, but they are still there and I expect they always will be – and that is just fine.

I sometimes wonder if the supports he needs have actually lessened as much as I think they have – or if we (H included) have just become adept at accommodating these needs more seamlessly and without much deliberate thought.

When we go to the theatre – H and I have a certain spot we like to sit – so that there is a metal bar in front of us. This suits me – as I have some knee trouble and am (like H) also quite notoriously wiggly – and it works for H as it is nearly impossible for him to keep his legs still.

He can put his legs up on the bars and since there is no one in front of us, we don’t have to worry about anyone having their seat kicked… repeatedly. We can also lean back in the reclining chairs more easily.

It is lovely.

Sitting at the front of the theatre also allows H to quietly whisper his oft needed shared communication of observations and queries during the film without bothering others in front of us. Of course – we still try to keep this to a minimum – and H is working to understand that the theatre is different from the living room at home. He gets that we are expected to be quiet… but it is still not easy to do. (Ya… I understand that part too. H and I are rather alike in many ways)

Sitting at the front makes it easier for H, but it is better for me as well. H seems to pick up on others’ emotions with keen sensitivity… so if I am more relaxed and don’t have to keep an eye on his kickity legs… that helps him too.

At home H’s sensory needs are pretty much taken care of as well. He has a favourite chair in the living room – on which he likes to perch – rather like a bird. It is an old glider rocker that used to be my grandma’s. We were going to get rid of it earlier in the spring, but H made clear his dissent.

We listened.

straws.jpgH has a collection of things upon which to chew in a little cup on the small table behind the couch. He likes toothpicks, and Trident Splash Gum, and straws and even dental floss. But… straws are the best.

We have a nubbly exercise ball – like a yoga ball – only with way more sensory input. It is always in the hall or the living room, and frankly, I can’t quite decide if I am ever so slightly embarrassed or proud to admit that it rather suits our decor, or that I don’t even notice it anymore.

H often has his feet on this ball and rolls it around while the rest of him is (relatively) still.

Relaxed.jpgH also has a fabulous body-sock, which he has had since he was 4-years-old. (Yes – we have had it for 10 years.) I have to share about this body sock, as it cost us next to nothing and has proved wonderfully durable and useful over the years.

I did not purchase it from fancy or pricey website: it is simply made from the ribbing used at the bottom of sweatshirts. I purchased 2+ meters of this from the fabric store, which was amusing to explain, especially 10 years ago.  I don’t think people usually buy more than a about 15 centimetres at a time, and in 2003 not many people were aware of sensory processing challenges and needs.

He used to play games crawling through it, roll about, ask me to tie knots in each end and pretend to be a monster – or move to music – or – just relish the calming comfort of perfect sensory input which he was (and still is) able to control and regulate for himself.

So tonight – I snapped a few photos of H watching a movie.. perched on his chair, wrapped in his beautifully twisty body-sock, and chewing a straw.

It is just so great to sit back and relax! Yay!

relaxed2.jpg

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

©Leah Kelley, Thirty Days of Autism (2013)   

Posted in Autism, Resiliency, Sensory Processing Disorder, SPD, stim | Tagged , , , , , , , , , , , , | 6 Comments

Two Little Girls

CollectiveResponsibility.jpgToday I am at a District Student Services Training for Special Education Teachers and others, which is hosted in the multipurpose room of one of our elementary schools.

There have been marvelous conversations and dialogues around supporting diverse learners, building capacity in regular education classrooms, the importance of differentiated instruction, and universal design, all within a framework of collective responsibility.

I like that… Collective Responsibility

And then, during my lunch break, I was privileged to catch an incredibly profound glimpse into the wonderful culture of this inner city elementary school…

Collective Responsibility…

In the hallway I overheard two little girls, who were heading out the big double doors for their lunch time play. I could only see the backs of their heads, but I caught a lovely bit of their conversation…

My guess is that they were in about grade 2 or 3, and they were speculating:

“I think it was the crowd that bothered him – he doesn’t like crowds…”

“No,”  responded the other child,  “I think it was the noise – he doesn’t like a lot of noise…”

And with that they were gone…

I was only privileged to hear a tiny snippet of their interchange before they were out the door for their noon-time adventures…

Collective Responsibility

Those little girls get it!

Collective Responsibility

And they got it from someone…

They got it from their school…

Collective Responsibility

They got it from opportunities to discuss and to imagine the experience of another…

Collective Responsibility

They got it from opportunities to hear the language to frame those experiences effectively…

So that they understood…

So that they extended understanding to another… and had the language to discuss it… and speculate… and GET IT!

Collective Responsibility…

and the potential impact that has on two little girls…

and from there – it can only grow…

And that was the best-shiny-star-beautiful-golden-hope part of my day!

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in acceptance, advocate, Autism, Collective Responsibility, diversity, Educator, language, perspective of others, promote social understanding, Special Education | Tagged , , , , | 11 Comments

Ode to the Stim: the printable sequel

I have received a number of requests for printable copies of this poem. Here it is – as a jpeg – which should be easy to print if you so choose.

Ode to the Stim - Leah Kelley

Created by Lean Kelley

Again, I could write more about this… but I still think this visual pretty much sums it up for me right now. Additionally, there are already some amazing posts that say what I would like to say or consider… so I am linking them up here:

Socially Inappropriate by Musings of an Aspie

Things my autistic kids love: Public transit by Small But Kinda Mighty

Way-To-Stim Wednesday: Video Series by Anabelle Listic

Stimming by Outrunning the Storm

Quiet Hands by Julia Bascom

Enjoy!!

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

©Leah Kelley, Thirty Days of Autism (2013)   

Posted in acceptance, Autism, Loud Hands, poem, poetry, stim | Tagged , , , , , , , , , | 14 Comments

The link between self-understanding and self-advocacy

I can get very excited about the topic of self-advocacy.

I am supporting H in his journey, but as I support his learning there are a number of things I have been pondering…

Opportunities to develop self-understanding:

I think part of the work that needs to be done in supporting H in becoming an effective self-advocate is that he needs to be given opportunities to develop self-understanding. I am tireless in my efforts to help the world better understand a child like mine and be responsive to and understanding of his perspective, as someone who experiences the world differently.

More than this, though, he needs to understand himself and the way that he experiences and processes emotions …or sensory overload …or too much language …or a large crowd …or – well frankly – the list is long.

This goes beyond self-awareness, because to truly advocate for himself there are certain things he needs to be able to do:

he needs to understand how his needs might be different from others

and then be able to explain this to others

and feel justified and empowered to ask for or explain what it is he needs

This self-understanding also extends to areas of strength…

H needs to be supported in understanding his talents and abilities in order to have an accurate vision of himself in terms of what he has to offer. He needs the opportunity to see the value of certain traits that will be potentially very useful throughout his life.  For instance, his depth of knowledge in his multiple areas of intense interest are a definite asset. He needs feel confident to be able to share that he has a certain spacial wizardry, evidenced in his amazing ability see possibilities and to create new things out of old.

If he has a good understanding of his strengths then he will be better able to advocate for himself so that his is able to make the most of these, and so that he is able to create or take advantage of opportunities for himself.

This is so much to expect – a lot to expect… but not too much.

H has just turned 14 – and adulthood is closing in fast. This used to worry me in a nagging way, but now I have mostly abandoned my forward-looking-fear of the future. Instead I am embracing a vision of H as capable and able to make his way in the world. I am really excited by the possibilities I see for my awesome boy – and for his emerging advocacy skills.

I still don’t know where this amazing journey with my child will lead. It is impossible to know the future, but I am convinced that working to support H in developing his understanding and appreciation of himself and his ability to share that with others will help him to be fulfilled as he moves into adulthood.

Related Posts:
Welcoming Your Dissent: A Poem
Strengths, Stretches, and Autism: More Lessons from the Thrift-Shop
Yours, Mine and Ours: autism, self-advocacy, and setting limits
‘Dear Teacher: A letter from H’ …Listening to Autism 13-year-old Style

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism, (2013)

Posted in Autism, Journey, self-advocacy, worry | Tagged , , , , , , | 5 Comments

Autism, Empathy, and The R Word

Originally posted on Thirty Days of Autism:

I have to tell you that my son, H, loved watching a somewhat irritating internet show called ‘Fred’ – which I think is rather much of a sensation with the early teen or pre-adolescent set. Well – a while back I asked him why he wasn’t watching it any more – and he said,  “Fred is dead – he used the R word – so I am not watching that show anymore.”

That was over 4 months ago… and he hasn’t gone back to it.

Last night we went to a movie and I was working hard to remind H that he needed to be quiet in the theatre. This is always a bit of a challenge – as he is so full of questions – and really I do want to encourage that kind of thinking and questioning and social interaction.

He usually does pretty well, but it still…

View original 392 more words

Posted in acceptance, Advocacy, Autism, diversity, empathy, the R word | Tagged , , , , , , , , , | Leave a comment

Exterminate Hate… Doctor Who Style!!

Happy Valentine’s Day from H ♥

Exterminatehate.jpg

 ♥ Check out the Love Not Fear Flashblog

The flashblog is open to autistic individuals as well as parents, family members and allies of autistic people. Share what “Love Not Fear” means to you. You can write a paragraph or a blog post, contribute a poem or video, make a comic or a graphic.

Use your imagination.

Let’s tell the world that Autistic people should be loved and that Autism should not be feared.

Please email your submission to: info@boycottautismspeaks.com by February 13th @ 12:00PM EST

Related Post: Advocating: Love-Not-Fear

_________________________________________________________ 30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism (2014)

Posted in ableism, Activist, Advocacy, Autism, autism stigma, Boycott Autism Speaks, flashblog | Tagged , , , , , , | 3 Comments

Stop… and Rail Against Stigma!

RailagainstStigma.jpginmemoryofalex “Stop,” a poem about the damage of negative stigma for Autistic people and those who love and support them, was originally published here, and was written in memory of Alex Spourdalakis… and far too many others…

I am ready for the day when social justice and human rights are extended to every person and this poem becomes an archaic relic from an ableist past…  I believe we will get there!

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Stop
 
These words of tragedy
Emblazoned on notepads and billboards
This epidemic of dehumanization
This narrowed definition of being
Twisted finer and thinner
So that it lacks any sensitivity
So that the words themselves are
A garrote
Cutting into flesh and spirit
 
Stop
 
When words and stance 
are played out deftly
to define other as less
to define different as solely deficit
and are used to silence
This – THIS – is the tragedy
 
Stop
 
My child is burdened with these words
That exclude
And distance
And define other as broken
And are shaped with intent to siphon fear
alchemy-like into big business’ pocketbooks
Words seeded and hooked with the bait of crisis
So the fund$ continue to be reeled in
 
Stop
 
Those who are on your hook
Who take up your fear-filled bait
Feeding hungrily on your emptiness
Your mean lies
They are left empty
And hopeless
Seeing only unmet potential
Instead of the beauty of diversity
This – THIS – breaks this mother’s heart
but at the same time, strengthens her resolve
Stop 
When difference is framed in fear
To stir activity
A call to action
To shore the millions needed to fund
your oft’ wonton cure
And at the same time silences those
for whom they claim to speak
This is not charity
 
Stop
 
The stance of stigma
Whose twisted legacy
Is used justify the pain
The othering
The silencing
The disappearing
The murder
Of people
Like those whom I love best
 
Stop!
             Leah Kelley ~ June 2013

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RailagainstStigma.jpg

We need to rail against stigma… Please find out more about #posAutive Action for Social Justice at BoycottAutismSpeaks.com

 
Related Posts:
http://www.autistichoya.com/2012/04/stop-killing-us.html
http://www.mmonjejr.com/2013/06/his-name-was-alex-spourdalakis.html
http://ravenswingpoetry.com/2013/06/17/rachels-lament-for-alex-spourdalakis/
http://mamabegood.blogspot.ca/2013/06/when-autistic-child-is-killed.html
http://blogs.redorbit.com/it-takes-a-village-to-kill-a-child/
https://ollibean.com/2012/09/01/a-poem-about-pain/
http://indigowombat.tumblr.com/post/52745911873/the-list-grows-longer
http://emmashopebook.com/2013/06/12/but-what-about-alex/
http://paulacdurbinwestbyautisticblog.blogspot.ca/2013/06/alex-spourdalakis-murder-in-memoriam.html

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30 Days of Autism is a project designed to promote social understanding and offer a glimpse into the perspectives of those whose lives are touched by Autism.

© Leah Kelley, Thirty Days of Autism (2014)

Posted in ableism, acceptance, Autism, autism stigma, diversity, Neurodiversity, poem, poetry, reframe tragedy | Tagged , , , , , , , , , , , , , , | 7 Comments