asperger syndrome

The Line We Toe with Neurodiversity

Lately, I’ve been seeing so much stuff online normalizing people with neurological conditions, but in a way that I feel is doing a great deal of damage. It’s been hard to find the words to describe what exactly is wrong with the “neurodiversity movement” because I fear I will be torn to shreds by all the special needs parents, purely because I’m not repeating the same mantra as everyone else. (Like, is the term special needs considered demeaning? I don’t know anymore.)

So if this post leads to my internet death, so be it. (Although I’ve always wanted to die through a crazy encounter with a giant bird of prey, but let’s get back to the blog here…)

In our mysterious politically correct world, we want everything and everyone to be so special and wonderful and great. We don’t want to offend anyone, or make anyone uncomfortable, or deal with trauma and pain.

It’s all good, all the time. And if it’s not good, it will be good again very quickly I swear DON’T PANIC EVERYTHING’S FINE STOP PANICKING.

It all begs the question: are we learning to look on the bright side, or are we learning to only look on the bright side because the other side is not ok? I repeat, It’s not OK. Don’t look over there. Hide yo kids, hide yo wife, etc.

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Where Things Get Icky

We spend so much time reading about how people with neurological conditions are “beating the odds” and “finding their passion” and “bringing uniqueness to the world.” The flawless-looking Instagram mom posts a photo of her 5 year-old son, he has autism and epilepsy. In the photo he’s smiling peacefully, using an organic pencil to create a piece of abstract artwork (which honestly looks amazing, holy crap) while the sun shines gently on the scene. Her husband is so handsome it’s shocking, and they all live in a jaw-dropping home straight out of Disgustingly Rich Southern Living Magazine, where they were a featured family in Issue 23.

There will, however, be no Instagram photo of that morning, when that same boy had a massive meltdown because he had to get his hair brushed. She won’t be posting a selfie of her tired face, as she was up all night with him dealing with side effects from his new medication. His younger sibling won’t sleep through the night, and she misses quality time with husband, and her eldest child is being bullied at school. (AND, her husband is also secretly one of those robot husbands fabricated in Japan, and a few friends are suspicious but none will ever say, “hey gurl, I’m pretty sure your husband is a robot.”)

You’ll see photos of her special, unique family, with all their blessings.

Her son with various special needs (there I go again with that term…am I to be executed now?) is unique, he is amazing, he is beautiful – he is a blessing. But the reality they face everyday raising a child with circumstances unthinkable to many is significantly less beautiful, and significantly less of a blessing. When you’re up to 3am because you’re having a panic attack for 7 hours about him, it’s not beautiful, and blessed is the opposite word to describe you feel.

Neurodiversity on the Street

The neurodiversity movement has exploded, thanks in part to the internet. (Thanks Internet, even though you can be annoying, you are still pretty cool.)

This means that people with atypical brains are being recognized and supported in more ways than ever. You can go up to any old person on the street and ask them, “What is autism?” and chances are, they will actually know something about autism. They may even know someone with autism and have an understanding of how this condition manifests itself in various people.

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If everything sounds so hunky-dory, than why on this great Earth am I making a blog post about it?

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The main source of neurodiversity influence for neurotypical people is the media. I’m looking at you, Facebook and Netflix. While it’s wonderful that millions of people are exposed to the realities of living with a different kind of brain, that reality is often skewed to fit an idea of what neurodiversity should be.

It’s almost like one of those Pinterest projects. You try to make those gorgeous red velvet cupcakes for your upcoming Christmas party. The photo you saw on Pinterest looked delicious and cute, but when you made them, your cupcakes looked like victims of a murder, and the taste was bland and filled with disappointment.

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The conversation being had about neurodiversity looks wonderful, but the reality is not so wonderful for the people directly impacted by neurodiversity. I’m not saying neurodiverse people are ugly cupcakes, but if I could create a visual of my life when things are really shitty, that visual would be of an ugly cupcake.

The Crux of the Matter

There is something lurking below the surface of this neurodiversity movement. It’s something that’s already been brewing for a while, but has the potential to overflow and make a big mess if it’s not addressed. It’s part of the not-always-so-glamorous-reality that we face as people with unique mindscapes. (Yes, mindscape, like landscape but of the mind. Think Bob Ross, but with less happy trees and more hippocampus.)

When we push people to accept neurodiverse individuals as “normal, but different” we create the belief that these people do not need any help. We put them on a pedestal of “YOU ARE PERFECT THE WAY YOU ARE, NEVER CHANGE.” Like something we write in our best friend’s yearbook at the end of middle school, we mean well.

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Ok, I’m not on fire, but you get my point?

It’s easy to reassure someone that they should be celebrated because of their unique neurological makeup when you aren’t the person with the unique neurological makeup.

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Maybe we don’t want ND people to change. We appreciate and love them just the way they are. But what if they could be themselves without all of the struggles? Our love for them wouldn’t change, and their lives would be easier.

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I often hear, “But my/my child’s/my partner’s life journey with this condition is part of who I am/they are. We should learn to love ourselves and others as they are. If you take that away, it wouldn’t be me/them anymore.”

As a person with an atypical brain (god bless you, you dysfunctional piece of meat), I can tell you, I am more than just a little different. I am not able to do many normal things. Sometimes I can do normal things, but then I pay for it later. (Sensory people you know what I’m talking about here.) I have gotten very skilled at pretending to be normal in many situations.

The thing is, I want to change. The way I am – the way my brain is – is freaking annoying. Basic activities can be hard and frustrating. It’s often stressful for my family. I’m exhausted from my life, and I’m only 27. I don’t have any spectacular mental gifts; I have spectacularly bad vestibular regulation.

Would I still have turned into the person I am today without having to manage a confusing and craptastic life of SPD? Yes, probably. And maybe I could have avoided dealing with the crippling depression and anxiety that comes with it. My SPD has made me who I am, but I would much rather it didn’t.

I’m still me with or without my neurological problem. It has shaped the person I am today, but it has added so much negativity that the few positives barely register as valuable to me.

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Many advocates for neurodiversity are campaigning for ND people to have long-lasting careers, date, socialize, participate in society in every way that NT people do. Unfortunately, this is not always possible. Again, like the Pinterest cupcakes, it sounds like a good idea, but reality has a different plan.

These people mean well, but unless they have lived it, it can be hard to understand the complexities of why “normalcy” may never be achieved.

For a person with high-functioning autism, for example, normalcy is possible in many ways. For a non-verbal person with autism who needs constant care and therapy left and right, this is significantly less possible. To suggest otherwise is undermining the reality many people and their families face everyday.

If we push neurodiversty as a normal thing, then we forget that having a dysfunctional brain condition is not normal at all.

Pushing neurodiversity as “normal” is ok when it’s referring to being diverse in ways that aren’t related to disorders or diseases. Like, I am really, really good with colors. I mean, I can organize, coordinate, identify, manipulate, and create colors in ways that I’ve found many people are impressed by. I believe my brain is really good at this for no reason. It is diverse but in a good way.

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Having autism is not good. Having severe anxiety is not good. Having OCD is not good. I’m almost certain most people would choose to not have any neurological condition, if given the chance. Parents would wish their child to be rid of all their struggles. Regular neuro-typical life is dang hard already – if we are given these extra problems to live with, let’s make sure we go about advocating for ourselves in the right direction.

Neurodiverse individuals can’t do everything. Even with accommodations, sometimes they will never be able to have total independence or success as defined by a group of people known as “the rest of the world.”

What to Take-Away from this freaking long blog post:

With all that said, the neurodiversity movement needs to propel itself forward with these three ideas in mind: Education, Acceptance, and Support.

  1. People need to be educated about neurological differences in a way that is not demeaning or false. The media has tremendous power in their hands to educate people in a way that will challenge old and outdated perspectives without being the same story of a white, teenage, man with exceptional brain abilities but terrible social status.
  2. The current neurodiversity movement is focused on acceptance, and it should continue to do so. However….
  3. The movement is not focused on support, and without support for ND individuals, the first two points are basically worthless. We can educate the population, and accept people for the way they were born, but without support (financial, medical, therapeutic, emotional, etc.) there is little chance of success or normalcy for individuals who are deeply impacted by various disorders.

Being neurodiverse is ok; celebrating it as normal and insisting that life of neurodiverse individuals can be exactly like those neurotypical individuals is not ok. It’s so easy to ride the politically correct wave. It’s less easy to stand up and say, “Hey ya goons, this is not all sunshine and roses! Stop glamorizing and normalizing neurological disorders and start funding programs that will help people like me do basic life stuff.”

Peace xo

kelly

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NEWSFLASH: Adults have SPD too

This post contains information that NEEDS to be said. Warning: the following may cause epiphany, sudden awakening of the soul, and Oprah’s “ah-ha” moment. Proceed with caution.

Approximately 93% – I just calculated that statistic in my mind – of all information on sensory issues, both in print and online, are geared towards children.

For a while, that knowledge left me feeling like this:

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One of the main reasons I started this blog was due to the near absence of information and resources for adults with SPD on the web or in books. The only exception to this would be a few blogs, and Sharon Heller’s Too Loud, Too Bright, Too Fast, Too Tight, which has become the bible for sensory-plagued adults. Unfortunately, SPD adults often find ourselves reading sensory books geared towards children, and attempting to relate the information to our adult lives. It can be awkward.

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Like many neurological disorders, sensory processing disorder does not go away with time.

A fun fact is that according to many medical “professionals,” children with sensory processing disorder just learn to live with their problems, or they simply grow out of the disorder.

At age 13, many people – including myself – were turned away from occupational therapists for the sole reason that we were too old to be treated for our sensory issues.

I remember asking my mom, with confusion, “What’s the difference if I’m 12 or 13? I still have the same disorder. I still need help for this.” Momsy didn’t know what to say, and she couldn’t have known.

Here is what I know: growing out of something is for clothing. People grow out of sweaters. People do not usually grow out of neurological conditions. They manage it and – in the case of SPD –  learn ways to live within their specific limitations. SPD can regulated with various therapies (occupational, physical, or psychological), but there is no cure for it just yet. However, this leaves us SPD adults with many problems.

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It leaves us feeling a strange sense of being “unwelcome.” Adults are not the target group, if you will, for awareness and research. SPD adults are very much ignored and neglected by the medical community. We often feel a sense of guilt for even asking for/seeking out help from professionals. We are given this look when we mention SPD to our doctors:

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This is not Hogwarts, my friends. SPD cannot be sent away with the flick of a wand, nor does it magically vanish when we turn 18. It is not fair or right that adults with neurological conditions such as sensory processing disorder are left in the dark simply because they are adults.

As an adult with SPD, I can assure you that my sensory problems are here to stay (for now). I’ve overcome many of my sensory struggles from my childhood – yes. However, newer and more overwhelming challenges have reared their ugly faces into my life as an adult with this condition.

Due to the belief that SPD is a disorder of childhood – WHICH WE GENIUSES KNOW TO BE FALSEanother belief now exists that there are no adults with SPD at all. Because of this idea that adults don’t have SPD, it is not recognized by our society, and therefore, we cannot get help or respect.

SO WHERE ARE ALL THE ADULTS WITH SPD?

I’ll tell you where they are. They are struggling to find their place in a world that doesn’t work with their sensory system.  Without acknowledgement from our community regarding this conundrum, we find ourselves turned off by the world.

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Moral of the story is this:

Adults with SPD are out there.  We are here! (Well, not really. We are actually trying to avoid the entire world while simultaneously being part of the entire world. It’s a tad complicated.)
Spread awareness and educate your fellow human beans that, in fact, adults with neurological condition DO exist. We need your compassion and respect in order to overcome our challenges.

xo kelly

Personal Hell: Visiting a psychiatrist

When I’m being treated by a psychiatrist, I imagine I’m on the popular television show, Jeopardy. It goes like this:

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Throughout my twenty-four years of existence, I’ve had a heaping amount of visits to doctors of all kinds in an attempt to manage my numerous life issues – my sensory processing disorder being at the forefront.

I believe psychiatric/psychological help is imperative when dealing with physical illness. So darn it all, I’ve got to pull on my big girl panties and get stuff done, no matter how miserable it is to visit a psychiatrist.

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I never enjoy going to see a psychiatrist. If I had $5 for every bizarre session with a psychiatrist, I could probably afford to go to medical school, become a psychiatrist, and THERAPEUTIZE myself.

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As usual, I just made up another word: therapeutize.

Definition: Therapeutize: to use therapeutic techniques.

In a sentence: “I’m going through a tough time with my wife, if I could only therapeutize my marriage back to where it used to be, we’d be happy again.”

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Psychiatrists never seem to pick good locations for their offices. Unfortunately for me, these locations are sensory UNFRIENDLY. I’m uncertain whether or not these locations are chosen on purpose.

One psychiatrist had the office lights so bright, I almost couldn’t open my eyes. That was a fun visit.

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Another had a million winding stairs up to the office, like one of those M.C. Escher paintings. I felt like I could die at any moment whilst making my way to the top. Additionally, it was nearby a train station, so periodically, the train would blare its horn and I would feel my lungs give out from the intensity of the sound. I’d grip the staircase railing, waiting for death.

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Some psychiatrists have leather couches to sit on. I don’t know about you, but my body doesn’t understand leather. It’s shiny, and rubbery. My body actually hates me when I sit on leathery surfaces, as I find myself sliding right off and into a pathetic puddle on the floor.

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Some psychiatrists don’t understand my sensory needs at all, which is both humorous and sadly ironic. For example, everything they do is often very noisy, including speaking. It’s not done intentionally, but most of them are so oblivious that they don’t even notice how sensory unfriendly they are. Even if I tell them directly about the nature of my issues, all psychiatrists seem to live in their own psychiatric bubble. Must be nice there…

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Even WORSE is when I’m in the middle of an appointment, and I REALIZE the absurdity of what is happening. I want to explode with rage and hurl various sized fruits at the ignorant person in front of me. Problem is, I never remember to bring the fruit with me.

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why yes i am

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thank you darling

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Still, the most difficult part of all of these psychiatric visits is when I have to think critically about myself and answer endless complicated questions.

How do you feel? How are you feeling? Describe that process? Can you give me an example of a time when your SPD did this or that and why it made you behave in this or that manner? The severity of anxiety and depression dissociative tendencies increases or decreases when compounded with the negative associations of certain stimuli with which you are negatively associated on the grounds ohfds  hfds hjbdnjcfnd sun43uhu nfjdnsf

My brain, now reduced to a mushy potato, replies:

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When it’s all over, I have an overwhelming urge to fill a void in my delicate psyche (created by psychiatrists poking at it too much). There is only one remedy for this kind of destruction:

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xo kelly

p.s. Please send all cake to me, I will stuff it into my psyche void. Thank you.

 

 

I am the Navajo Warrior

Somewhere in the woods behind my house lives an entire pack of coyotes. I know this because every now and then, they will all begin to shriek and yelp together for a minute or two. The sound of it is rather disturbing, and it usually happens in the middle of the night.

One night, I woke to the sound of the coyotes howling, except this time, they were louder than ever before. In fact, they sounded as if they were right outside my house. They went on forever, until suddenly, I saw a light flick on outside my window. Instantly, the entire pack was silenced. The light remained on for another minute, then went off. No more sounds were heard for the rest of the night.

The next morning I jumped out of bed eagerly (which is not normal for me, because getting out of bed is my most hated activity). I ran to my sister in the room next to mine, hoping she too heard the commotion last night.

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Next, I quickly searched for Momsy. Surely she must have heard the wild noises in the night! She hears everything.

 

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On the brink of completely losing it, I texted my dad.

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(Yes, I  still have one of those awesomesauce flip phones with a keyboard, built in 2007 or something.)

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When I got Dad’s reply, I was overjoyed! DAD HEARD THEM TOO.

Then he sent another text:

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What a fantastical idea!

I was already wearing my striped pajamas, so I quickly threw on some heavy duty neon teal socks, then my boots, my poofy coat, a polka dot scarf, old blue mittens, and of course, my owl hat. I contemplated putting some sort of helmet on my head, either a metal pot or pasta strainer, but I opted out and risked head injury. The wilderness called me, and I was prepared.

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I stepped outside into the cool morning and marched through the snow towards my garden. I peeked around like a ninja and scanned the trees and snow banks, looking for evidence of the wild dogs. It was quiet and still. The trees loomed over my head, watching me.

I  hunted for tracks in the snow, or anything to give me a clue! Suddenly, I spotted some faint tracks and a brown blob just ahead of me.

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To my frustration, it was just the paw prints and old turd of my dog Sam.

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Sam was outside on the deck, glaring at me. He poked his pudgy face through the deck railings.

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After the incident of false hope, it was then that I noticed that I had forgotten to grab a golf club for protection. Instantly, I was vulnerable; a snack waiting to be devoured. I tried to imagine the scenario if the coyotes appeared. It went two ways:

Option 1, I beg for mercy and convince the coyotes that I am not worth their efforts because I would be a pointless snack.

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Option 2, I summon my inner wilderness warrior and become the leader of the pack.

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After a while of searching, there was no sign of the pack of coyotes anywhere. I returned inside, a little TREMENDOUSLY disappointed.

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I texted my dad, and told him I found zero evidence. I also casually mentioned that I went out there without any weapons. I told him I was a warrior of nature, essentially.

This was our actual conversation, I copied it directly from my phone:

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At the end of the day, it was only my dad and I that heard the coyotes. We have yet to purchase night vision goggles, as they are more expensive than either of us realized. Still, my quest to track down the coyotes will never cease. When I hear their calls in the darkness, I stealthily peer out the corner of my window and hope to catch a glimpse of the scruffy dogs of the wild.

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Are YOU a wilderness warrior? Have you had an extreme run-in with nature?! Comment below and join me in my quest to become keeper of the wilderness! Together, we can save the animals.

xo kelly

 

 

 

If Disney Princesses Had SPD/ASD

In all Disney movies, the “Disney princess” faces various, complicated obstacles. However, I cannot think of a single princess that has faced a real-life disability or disease. Then I thought, what if Disney Princesses had Sensory Processing Disorder? What if they were on the autistic spectrum?

The following is my prediction of what Disney princesses (and their stories) would be like if they had SPD/ASD.

(Also, for the first time ever, I did not draw any original illustrations for this post. Instead, I added my own bits to Disney pictures. I hope you enjoy it anyway.)

 

Cinderella

Ok, I’m skipping right to the part in the story where Cinderella goes to the Ball. Logically, if Cinderella had sensory issues, this would never work. Sure she could give it a good effort, but in the end, a meltdown is likely to ensue. No sensory sensitive princess leaves untouched after a large royal gathering.

We all know how that ends.

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Belle

The most glaring problem here is the fact that Belle is in a relationship with an unstable beast. Belle would find herself overstimulated, unsupported and for lack of a better word, really turned-off by the beast’s intense personality.

Additionally, there is ABSOLUTELY NO WAY that Belle could have soared around the library on that freaking bookshelf ladder.

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Pocahontas

While she does live in the peacefulness of nature, Pocahontas would most likely not be flinging herself over waterfalls and just around the river bend. Hello! This is too much to ask of any sensory sensitive princess’s motor skills.

Not to mention, she has to deal with a bunch of gun-wielding maniacs who want to destroy the Earth and Grandmother Willow. Talk about stress! Better hope a girl’s got some sensory tools in that longhouse of hers.

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Merida & Rapunzel

All I can say is: HAIR.

I’m still adjusting to my shoulder length hair after years of having short hair. Of course, Merida and Rapunzel may find their excessive hair very soothing, but to imagine having the hair of either of these ladies is beyond my comprehension. The only exception would be that scene where Rapunzel wraps herself tightly in her hair after rolling down a hill. She’s got her own personal deep pressure device.

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Jasmine

When I look at Jasmine, the first thing that pops into my mind are those ginormous earrings. Alright, so she’s royalty and gold earrings are traditional attire for your basic princess, still, Jasmine appears to have two heavy triangular-shaped fruits hanging by her face, smacking into her whenever she turns her head too quickly. The sensation of those ALONE would be enough to make any princess lose it.

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Jasmine is lucky however, because she has a large tiger friend to provide her with lots of sensory tactile relief. I need a large animal to squish me and stuff.

 

Ariel

This one’s pretty obvious: SHELL BRA.

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No further comments.

 

Mulan

I’ll admit that I’m kinda biased here because Mulan is my most favorite Disney Princess. Not only did she sneak her way into the Chinese military, but she defeated the vicious Huns and saved an entire country with some uncoordinated soldiers, the Eddie Murphy dragon, and a cricket.

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If Mulan had sensory issues, China would have been overtaken by the Huns and everything would be terrible. Yes I said it.  She’s trying to save an entire country – I’m certain she would have no time to take sensory breaks. Even if she survived the military training, I do not think her sensory stamina would hold out for that entire duration. I’m talking about that scene where she shoots the rocket into the mountain and causes an avalanche, miraculously survives, and then goes to the city to fight the Huns with her gang of loonies. AND WINS.

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The Emperor’s chaotic celebration ALONE would be a solid nope.

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Dory

Technically Dory is not a princess. She is a blue fish who helped Marlin find his son. I’m including her in my list because, from my observations, Dory might have sensory/autism issues. We know that Dory has complications with short term memory, but aside from that, she’s got quirks much like those with sensory problems or autism.

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Although she is friendly, she struggles with social situations, including lack of awareness of danger. Dory enjoys things like talking to whales and bouncing off jelly fish. I can only conclude Dory is a sensory-seeker. She is very sensitive, as she spends much of her time comforting others and generally being optimistic about the state of things even if the world looks bleak. She is a curious adventurer, and despite her peculiar behavior, Nemo would never have been found without Dory’s help. Perhaps things would have gone a bit smoother if Dory had brushed her fins with a sensory brush that morning.

 

Elsa

Unlike our favorite fish Dory, I imagine Elsa is a sensory-avoider. I almost hate to include Elsa because she has become the “celebrity” Disney princess. She has made this list, however, because Elsa displays the closest thing to what a princess would be like if she had SPD/ASD.

Although Elsa has learned to control her ice powers, her behavior and life has been drastically shaped by her condition. The same thing can be said for those of us impacted by SPD/ASD.

Elsa’s parents responded to the difficulty of their child by locking her in her room. Obviously, this was never a good idea. Elsa grew isolated and depressed.

After having a meltdown in front of basically the entire town, she ran away into the snowy mountains and built herself a fortress of ice. In the sensory world, this would be similar to you coming home after an overstimulating trip to Target and building a couch fort with blankets and pillows, and trapping yourself in the safety of the sensory-controlled space surrounded by all your favorite fidgets.

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It is only until Elsa learns how to channel and manage her ice powers does her life improve. She becomes Queen, sends the bad guys home, and restores order to Arendelle. Similarly, when those of us with SPD/ASD learn to manage our various issues, we could become royals, defeat bad guys, and restore order to an entire Kingdom.

Or, we could just manage basic life skills and that would be a big freakin’ achievement too. 

I may not be a Disney princess, and neither may you, but I like to dream that one day Disney will create an animated film about a princess (or prince!) with Sensory Processing Disorder or Autism. Not only will this character be most awesomesauce in every possible way, but the film will accurately portray the reality of these disorders. It will surpass Frozen and The Lion King in profits, and become the most beloved Disney film of all time ever in the history of mankind. No, my expectations are not too high. DISNEY CAN MAKE IT HAPPEN.

 

There you have it.

Are you (or your child) a wannabe Disney hero with SPD/ASD or something else? Tell to me in the comments and maybe Disney will see it and make a film about you.

 

xo kelly