Author Archives: FlappinessIs

A Little Girl Laughed Today: On Special Needs Feel-Good Shares That Don’t Feel So Good

download (4)Today, I saw a scene that would have stopped you in your tracks, if only you knew what preceded it.  I witnessed a moment I wouldn’t have imagined in darker days for this girl.  I won’t tell you how I know her story, because I know her parents aren’t looking to make her famous. There were no photographs.

What matters is what happened.  And what happened stole my breath.  Because this girl has been picked on — badly.  She has suffered enormously with triggers causing behaviors that are alienating and confusing to others.  She has no friends.  

But today was amazing.  Today, some kids who took the time to get to know her a little – kids who have no knowledge of autism, but don’t really require it because they are innately kind and cheerful – made her laugh.  And watching her laugh made them laugh and smile and laugh some more.  They were three kids just cracking up laughing over something that was pretty funny in a slapstick kind of way.  She laughed for a long time.

It was beautiful.  Not in that “How sweet and heroic of him to take the autistic girl to the prom” kind of viral sweetness that draws you in, despite the lingering questions over what kind of romantic hopes the girl might have on Saturday morning.  Not in the way that whispers, “See what a wonderful person I am? I’m kind to someone you’d never expect.   But I did this amazing thing.  Let’s tell everyone about it and make her one day possibly reflect on how she is so different that only one selfless person wanted her company.” 

I cringe over these stories.  I do think that what many of these kids, celebrities, and strangers have done has been well-intentioned.   It’s the way we share it that’s bothering me.  It’s the way we gush over it and make special needs people famous for a day — because some person did what others would have considered unthinkable.  My problem isn’t the action taken.  It’s the echoes left behind after we’ve marveled so publicly.  The questions the girl may have about her own worth as a person — if the whole world went crazy over somebody being kind to her.  

A little girl laughed today.  I don’t have a video to share of it.  But I can describe it for you.  An autistic girl who rarely smiled and interacted with others – because of cruelty and the nature of her disability – laughed with other children today.  A child who had need of friendship, shared interests, fun, and laughter like every other child— but who was plagued by sensory overload and a lack of awareness and acceptance – laughed with other children.  Giggled and snorted even.  How I wish I could’ve recorded it – not for you nice folks, but for those who love her.  They would’ve cherished it.  

And she laughed because some nice kids took a genuine interest in her.  It wasn’t to make a point or get praise; they just think she’s interesting and wanted her company.  And she thought they were worth knowing and laughing with.  It’s a triumph for her.  I’m the only person who saw it, and that’s perfectly okay with me.  Because they know it, and she’ll remember it.  She made friends.  They were happy for her and for themselves.  And that means she’ll likely try it again.  I sure hope so.  I hope that she laughs a lot more in her life.

Mostly, I hope that her friendship skills continue to grow and that she makes the kinds of friends who will be nurturing and a pleasure to spend time with.  The kind who aren’t looking to make a public statement, but who intend to value her friendship beyond the viral tweets and shares.  I hope that one day nobody sees her as a surprising candidate for prom date — and instead just wave at her as they dance by.  I want her to hear messages that aren’t “Yay!  You’re here! We’re so surprised!” and are instead “Of course, you are here, because you’re one of us, and it’s where you belong.”

These are my hopes for her.  And my hopes for my own child.  The circumstances and events may change, but I hope for the same thing for all the kids not yet on the playground.  

A little girl laughed today — and took a few steps closer to those in her world.  Every day, I pray that others will meet her halfway — only without looking over their shoulders for the camera.

Because I don’t ever want her to see that camera and wonder why it’s there.     

Product Review: The Yogibo Max

yogiboIf you’ve followed me for any time, then you already know that I don’t write a lot of reviews. However, occasionally I’m in need of the same kinds of things that other folks might be in need of as well. When that happens and the stars align, I’ll get an offer to test a product in exchange for an honest review – and I’ll actually respond and say yes.

 

In recent months, Callum has made a lot of progress. His willingness to attend to a task has greatly increased, and we’ve been all kinds of busy looking for new ways to engage him. That’s when I received a very nice email from the folks who make the Yogibo Max “lounge chair.” The email mentioned that some special needs families have seen benefits to owning one and offered me the chance to try it out. I said yes, picked my color (from 16 color choices), and waited for its arrival. It didn’t disappoint.

 

I’ll start off by saying that the box it came in was initially a bigger hit than the beanbag. (Isn’t that always the way with little ones?) But as soon as I set it out in the living room, my little sensory seeker fell in love with it. It’s a kind of bean bag. But bean bag isn’t really a fitting description for this thing. The Yogibo Max is more like a really flexible piece of furniture. You can position it in any number of ways, and we’ve used it for everything from reading to the kids to playing games to sleepovers to the only place my husband could sleep for a couple of nights after pulling his back. It’s pretty nifty and much sturdier than cheap bean bags you’d pick up from large retailers.

 

yogibomaxfamCallum gets a lot of sensory input from it. He rolls around on it, takes flying leaps onto it, and interacts with whoever is already sitting on it when he decides to join. He has snuggled with his sister on it, giggled along with her friends on it, and verbalizes “Daddy! Tickle me!” while presenting his belly. He loves this thing. He’ll soon be having his beloved 1:1 aide working in our home this summer doing behavioral therapy, and I know it’s going to be a big draw for them as she keeps him moving and interacting.

 

All-in-all, it’s a great little all-purpose addition to our home. We got it in chocolate brown to match our furniture so that it doesn’t feel like we’re in a therapy clinic or daycare. The cover is removable and washable, so it’s easy to keep clean. And it can be easily folded and leaned to keep out of the way, if need be. We’ve had it a couple of months in a home with two hyperactive little ones, and it’s held up well.

 

If you’re looking for a sensory friendly, kid friendly, but practical lounge chair, I recommend the Yogibo Max.  (You can use the code FLAPPINESS for a 10% discount.)

There’s Still Time: Love and the Autistic Child in Your Life

windowOnce upon a time there was an autistic child. He wasn’t “easy.” He didn’t talk like the other children in the family. He didn’t play the same games. He wasn’t interested in going to the same places — hot festivals, toy stores, and noisy restaurants. His family loved him, but he often wasn’t included. He wasn’t invited for sleepovers. He didn’t get the same special outings as his siblings or cousins. Initially, he didn’t notice. But as he grew older, he did. When they came by to pick up his siblings, he wanted to go too. When everyone left without him, he stood at the window and watched them drive away. But his family believed his parents understood– that he was too much to handle.

But he wasn’t. He was a joy. The outings he enjoyed were simple — rides in the car, trips to the grocery store, splashing in the pool, playing in the mud, swinging in the park. But, for whatever reason, he was never invited to do any of those things – the things he could do and enjoy — and kept being passed over for the children in the family who, presumably, were more fun to spend time with.

He continued to learn, develop, and grow. Eventually, he knew. He knew he was different. But what he didn’t know was what the family had assumed he would — that  he was loved equally. That’s because love isn’t what’s declared. Love is what’s done. It’s easily identified in any language – or lack thereof. And when dispensed unequally – and obviously — it denies both the receiver and the giver.

He knows. You know.  And there’s still time to do it differently.

Bell’s Palsy: My Tour Guide to Autism

bp2In the past couple of years, some clever people have created online autism simulations. Autism simulations attempt to sensitize neurotypical people to what those with autism experience on a daily basis. When you play an online autism simulation video, you’re immediately bombarded with confusing sensory input – loud and discordant sound, bright lights, and camera movements that cause vestibular discomfort. Voices and background noise become one, and the busy world suddenly becomes an unpleasant place in which to reside.

But it’s just a video. Two minutes of noise and visual chaos, and you’re done. I’ve watched them. And, while I appreciate what the creators aim to accomplish with them, I’ve understood that I wasn’t greatly enlightened by the experience.

Bell’s Palsy changed everything.

Four months ago, I pulled into my workplace, got out of my car, and attempted to smile at a co-worker. That’s when I realized half of my face wasn’t working. I walked inside, looked in a mirror, and decided I was having a stroke. After a quick trip to the ER and a brain scan, it was determined that I had simply come down with Bell’s Palsy, a form of facial paralysis resulting from damage to the facial nerves. Relieved that it wasn’t something life-limiting, I returned to work and attempted to feign a positive attitude about my now jarring facial expression.

As it turns out, I had a pretty bad case of Bell’s Palsy. Within a day, my face became overly sensitive. The slightest touch of a fingertip was painful. A fan blowing on my face made my head ache. Because my left eye wouldn’t close properly and I couldn’t squint, bright light became problematic. I could barely see upon stepping outdoors, and bright indoor lighting was disturbing to me. My eyes blinking at different times upset my vision.

But the worst was yet to come. Within two days, the Bell’s Palsy had worsened. And, because I had complete facial paralysis, the muscles that normally dampen sound ceased to work. The condition is officially called hyperacusis, but I called it Superman Hearing. Suddenly, I could hear everything – the filter on the fish tank, the ceiling fan in the other room, the pop in my husband’s jaw as he ate. But it wasn’t simply a matter of hearing everything. The problem was that it was all at the same volume. So, everything became too much. I nearly went into a panic at work. The school bells were painful to me. A pencil dropping on to a desk made me jump. I had to ask everyone to lower their voices, and I couldn’t tolerate radio or TV. I donned headphones and tried not to cry. But my voice amplified inside my head with the headphones on, so I couldn’t tolerate speaking with others. All I wanted was to curl up in a ball in bed in the dark and wish the world away. Because the world? It hurt me.

And – although I’d comprehended that sensory integration issues impacted my autistic child – I now look at him with all new eyes. Because of this experience, he’s even more amazing to me. Amazing in that he walks through life experiencing this (though I’m certain it’s probably not exactly the same) every day. Whereas I shut down for a few days and hid out during the worst of it, he isn’t given that option. He’s 5 years old, and the world is attacking him. When I’m alone with my thoughts and consider that, it steals my breath. And when he curls up in a ball and hides out from the world for a few minutes, I find myself understanding in a way I couldn’t have before.

Did Bell’s Palsy make me autistic? Of course not. Do I now have a complete understanding of the autistic experience? Nope – not even close. Because Bell’s Palsy did not affect my ability to communicate. It didn’t alter how I perceive others. It didn’t change the way I process new information. I still think in words and not pictures.

But Bell’s Palsy did act as a tour guide of sorts. It took me to a place I’d never been and pointed out some key areas I wouldn’t have discovered on my own. It gave me an experience merely reading about couldn’t afford me. It allowed me to see my son and his reactions to the world with a different lens. It isn’t often that we get to live as others before returning to our own lives. But when we do, we are changed – forever reminded that our own perceptions are just that, perceptions. When you realize that your perceptions aren’t necessarily facts, then all manner of truths and possibilities open for you.

So, despite the residual paralysis, pain, and hearing and vision issues I’m still experiencing, I understand this lesson to have been both painful as well as a gift.

Of course, the most valuable lessons in life usually are.

 

Best Picture Books about Autism

A few weeks ago, I was asked if I might be willing to come in and talk to a group of kindergarteners about autism. Of course, this isn’t just any group of kindergarteners. It’s my autistic son’s peers. So, I wanted a read aloud or two, and I wanted them to be good. Being a school librarian, I know that there are an awful lot of children’s books out there. So, I asked the most qualified people I know –my readers — to offer their suggestions on my Facebook page. I got a lot of them.

I couldn’t afford to buy them all, so I ordered several that seemed to fit the age group and read them all in one sitting. No, I didn’t like all of them. I’ve included only the ones here I’m recommending. Simply because I don’t find negative reviews useful to an audience of readers who already have limited time. I tend to shy away from the preachy ones, believing that children are much savvier readers (and listeners) than we give them credit for. And I like books that are a bit subtle and lend themselves to fruitful discussion. Because that’s where you reach hearts and minds.

1. Looking after Louis by Lesley Ely, illustrated by Polly Dunbar

lookingLooking after Louis is the story of a little boy, Louis, who is autistic and is a student in a regular elementary classroom. His friend, an unnamed little girl, narrates the story as she and her classmates try to understand Louis and some of his unusual behaviors. Louis repeats what others say. He colors pictures that others don’t understand. He runs about through the children’s soccer game. Though the children are sweet and generally accepting of Louis, they do begin to notice that Louis is allowed to do some things they aren’t – and point it out. But then a moment comes along in which everyone recognizes Louis’s effort to communicate something special to him. That leads another child to invite Louis to play with him, but it isn’t recess. His teacher, understanding that this is a teachable moment, allows them to go outside with Louis’s aide. The little girl at first resents what she views as special treatment, until her teachers gives her a moment to consider her opinion. Ultimately, she decides that sometimes it’s okay to break rules and expectations for special people – thus supporting the idea of inclusion in the regular classroom. It’s okay that some things are different for students who require it, but everyone can be friends.

I really liked this little story, mainly because the range of emotions for these children is honest. At times, they are encouraging of Louis. Sometimes, they are bewildered. And others they are a little resentful of what they view as unfair. However, because of their teacher’s open and accepting handling of Louis, they learn about the true spirit of inclusion. This would make a great read aloud that could lead to a productive conversation about differences. Instead of telling, this book shows what a tolerant and welcoming classroom should look like – a point in its favor and one that distinguishes it from preachier special needs children’s literature. Recommended.


2. Andy and His Yellow Frisbee by Mary Thompson

andyAndy and His Yellow Frisbee is the story of Sarah, a new girl at Andy and Rosie’s school. Sarah has noticed Andy, who is autistic, each day at recess, spinning the same yellow Frisbee over and over. She decides to try to connect to Andy by inviting him to spin her pink Frisbee, which she has clearly brought from home in an effort to engage him. Andy’s sister Rosie, playing soccer nearby, faithfully watches over him. She becomes concerned when she sees Sarah sit down next to Andy, knowing that others do not always understand him. She leaves the game and comes over to observe them, seeing Sarah’s gentle effort to interact with Andy and her acceptance that perhaps he’ll choose to do so on another day. Sarah and Rosie decide to play Frisbee together.

I loved this subtle story of acceptance, probably because Sarah reminds me of my daughter. Between Sarah’s effort and Rose’s calm but protective wait-and-see, this story gently conveys to typical children that there is no magic formula for interacting with someone who is autistic. What’s important is to realize that effort does make a difference, even if there isn’t an immediate reward. Andy did notice Sarah’s Frisbee offering, though he continued to play by himself. Sarah’s acceptance of that is beautiful and will serve as a model for typical students wanting to interact with their autistic peers, but unsure of how to do so. Andy and His Yellow Frisbee isn’t what I would choose as a first read aloud when introducing the concept of autism to typical students, because its focus is narrower. But I think it’s ideal as a follow-up later to reinforce lessons on differences and to help students learn to engage with their autistic peers. It is also a lovely story for protective siblings of children on the spectrum. Recommended.

3. Ian’s Walk: A Story about Autism by Laurie Lears, illustrated by Karen Ritz

ianIan’s Walk is the story of siblings Julie, Tara, and Ian – who is autistic – and their walk to the park. Julie initially doesn’t want Ian to tag along, but gives in when he whines. Her mother admonishes Julie that she must be sure to keep a close eye on Ian. As they head out on their walk, Julie observes the different ways that Ian hears, sees, smells, and feels things. Even though she makes these observations, she finds herself frustrated with the inconveniences of Ian’s differences and loses her patience. When the girls stop to get pizza, Tara reminds Julie to watch Ian. But Julie is distracted and suddenly realizes that Ian has disappeared. The sisters race about, frantic to find their vulnerable little brother. Then Julie focuses and decides to think and experience their surroundings like Ian – where would he be? Sure enough, that’s how she finds him, making the big bell at the park gong back and forth. Julie is so grateful he is safe that she now has a new perspective on their walk back. This time, she allows Ian to enjoy the walk as he wants to experience it, allowing him to stop and immerse himself in the sights, smells, and sensations he loves.

Ian’s Walk is a beautiful story with a simple plot, but one that conveys the complex sibling relationships inherent in special needs families. It’s an obvious story to share with siblings of autistic and special needs children (or even in support groups for such). But because the story also describes so well many aspects of autism and sensory integration disorder, it would also be a great introductory read aloud for the topic. My 7-year-old loved this story and recognized both her brother in the story as well as her own emotions in it. Recommended.

4. My Friend with Autism, Enhanced Edition with CD by Beverly Bishop, illustrated by Craig Bishop

myfriendwithautismMy Friend with Autism isn’t a story so much as a narration by a peer, who tells readers about his friend, who is autistic. It begins with an explanation of all the things his friend is good at – hearing, seeing, touching, tasting, being smart, etc. For each thing his friend is good at comes an explanation of how that affects the friend (examples: extra-sensitive ears that hear before others but cause him to sometimes cover his ears). This part is a positive outlook on autism, but matter-of-fact. There is a shift about halfway through when the narrator explains that – while his friend is good at many things – there are some things that are difficult (talking, understanding feelings, sharing, etc.) What’s good about this part is how the narrator makes suggestions of what can be done to help the friend when these things occur.

My Friend with Autism is a practical and positive introduction to autism for typical students. It treats autism as something children shouldn’t worry about and conveys to them that they really can be friends with their autistic classmates. This enhanced edition comes with a guide for adults that includes factual information about autism as well as tips for working with children on the spectrum. The CD includes coloring sheets of pages from the book for children to enjoy after the read aloud. I would suggest this book as a first read aloud for an inclusion classroom to be followed by one or more of the other stories in this list.

If you have shared any of these wonderful books with children or students in your life, please comment below.  I’d love to hear from you.  🙂

Note to publishers and authors: I’m happy to update this list over time, should you wish to send me a review copy. I’m interested only in picture books. I simply don’t have the time right now to read and review novels. Send queries to: flappinessis@gmail.com.   

 

The SPECTRUM Alert: An Autism Elopement Protocol for Schools

elope1edit_edited-1On October 4, 2013, Vanessa Fontaine’s worst nightmare came to life.  Despite having warned her autistic son’s school that he was prone to wandering, her son ran right out the door of his classroom – past cameras and a security guard – and vanished.

 

Her son Avonte’s remains washed up from the river three months later.

 

In May of 2014, a nine year old autistic child from Bellevue, Nebraska, left school – unnoticed, surprising –and frightening–his mother by walking in the door and asking for a snack.  Her son functions at the level of a 5-year-old and crossed two busy streets to get home, with no understanding of how to do so safely.

 

Again, in May of 2014, another nine-year-old child on the autism spectrum left his Oakland Park, Florida school early and walked 12 blocks home.  He was found trying to get into his home through a window and later described chatting with a complete stranger along the way.

 

These aren’t the only incidents of autistic children wandering from school (commonly referred to as “elopement”)..  Following such stories, we usually hear school districts “express concern” and pledge to “work with parents to ensure their child’s future safety.”  I’m sure they mean it and will probably try.  But what do they say to mothers like Vanessa Fontaine?  Her son’s school can’t work with her now.

 

The vast majority of U.S. schools do not have an autism elopement protocol.  It’s not because they can’t afford it; an effective protocol like the one I will propose here is mostly free.  The reason schools don’t have one is simple — they don’t realize they need it.

 

In the not-too-distant past, many students on the spectrum would have attended special needs schools.  Such schools usually have a depth of experience with elopement.  But mainstream schools usually do not.  Inclusion has been a big thing in American education, with autistic students now attending class now with their typical peers.  However, these students do not always have the support they need.  Teachers and staff rarely receive autism-specific training.  Human beings make mistakes.  Doors get left open.  And, in the chaos and panic of discovering a child is missing, bad split-second decisions are made in the absence of an effective plan.

 

Today, one in 68 children is diagnosed with autism. Statistically, half of them will elope, and more than a third cannot effectively communicate their name, address, or phone number. (An even higher percentage will struggle with communication beyond this.) And autistic children are often drawn to water. Of the children who are found dead as a result of elopement, 91 percent will be found in water.

If a school district’s plan to address autistic elopement is merely to wait for it to happen and call police, they are planning for tragedy.

 

After consulting with members of law enforcement, here is a protocol I’m suggesting to my child’s school district.  I’m calling it The SPECTRUM Alert for Schools.  The important thing to remember is that this alert/code will necessarily look different for each school.  To be effective, it must be planned by individual schools based upon their location, size, design, proximity to water, etc.  The SPECTRUM Alert is not a ready-made plan, but a roadmap for designing one .

 

S  (Search grid)    In conjunction with law enforcement, the school and surrounding community should be mapped out on a search grid.  If the school is fenced in, there should be a perimeter walk to determine any areas vulnerable to elopement.  From there, the grid should expand outward a mile or two, taking into account any and all bodies of water, dangerous intersections, train stations, parks, playgrounds, etc.  School personnel not directly supervising students should already know and have practiced reporting to their assigned search areas.  Note:  Water should always be searched first.  No matter what.

P   (Pre-identification)    Each child prone to elopement should have on file a Quick Reference Sheet.  This should be compiled by the school with the assistance of parents and possibly personnel who have worked with the child previously.  It should contain the following information:

1. Child’s identifying information

2. Presence of GPS tracking technology

3. Current photograph

4. Child’s current level of communication

5. Child’s documented interests, behaviors, preferences, aversions, etc.

6. Health considerations

7. List of possible locations the child might go within the search grid

E  (Law Enforcement liaison)    One person’s job should be to call law enforcement immediately.  This should happen while the search begins – not following it.  In addition to contacting 911, this is the person who should contact parents immediately.  The liaison could also commence activating a “phone tree” already set in place by parents.  That phone tree might include friends, family, and neighbors willing to assist a search.  The child is likely to know these people well and may respond to them more easily.

C  (Code)    Typically, schools have alert codes.  In my district, they are based on colors and represent different emergency situations.  Students and staff know how to respond to each code.  A code should be called on the intercom.  This will keep students out of the way of the search party.  Teachers should be instructed to quickly look into the hallway and out windows and alert the office if they see the child in question.  In upper grades, it might also be possible to have students assist in a search in teams on school grounds.

T  (Training)    All school personnel and school resource officers should receive training in autism.  Such training can often ward off elopement incidents to begin with. That training should include information in sensory integration disorder, social difficulties, literal thinking, common triggers for meltdowns and elopement, law enforcement considerations, food aversions, bullying and autism, self-stimulation, and more.  It would be a good idea to consult an organization like CARD (there’s usually one in your area) and a behavior analyst in planning this training.  A 15-minute after school meeting isn’t going to suffice.

R  (Relationships)     Law enforcement, school personnel, and school resource officers should be encouraged to develop positive relationships with autistic students, who are often very literal in their thinking and may fear the police, based upon what they may have seen on TV.  Classroom visits in non-emergency situations should occur so that in an emergency ,these children will not fear police and jeopardize their recovery.  As soon a child prone to elopement enrolls at the school, the faculty and staff (including cafeteria workers, bus drivers, etc.) should be notified.  They should see the child’s photo and learn his or her background information.

U   (Understanding)     Common triggers that distress students on the autism spectrum should be understood by all staff, including substitute teachers and volunteers.  By stressing the Understanding component of this plan, schools can often avoid the situations that might prompt an autistic student to elope from school.  Because special events in gyms, auditoriums, and cafeterias are often painful to the senses of autistic students, there should be a careful plan to avoid subjecting these children to trauma.  A trigger for elopement could easily go unnoticed in the chaos of an activity day.   This component is the most powerful part of this plan, though the least understood if effective training of staff doesn’t occur.

M  (Media)     Radio, television, and social media are powerful when it comes to locating missing children.  A media strategy should be considered by the school district and law enforcement for use with autistic elopement situations.  Facebook would be a particularly useful tool in small cities.

 

Ideally, the SPECTRUM Alert will not be confined to the school.  Local law enforcement could enhance this alert system by allowing special needs families to pre-register a vulnerable child with the department in the event of a wandering incident outside of school.  Schools with personnel that could be made available to police departments for autism training would make this even easier.

 

The SPECTRUM Alert protocol would cost a school district little to no money.  Most of it involves planning with personnel already on the payroll.  It’s simply a matter of a school making the choice to plan for an elopement incident and putting it into practice.

 

Human beings are by nature inherently optimistic creatures.  We tend to go through life not prepared for the worst out of a self-protective need to believe it won’t.  But schools cannot afford to do this with regard to autistic elopement – any more than we can afford to not prepare for fires, tornadoes, or armed intruders on campus.  As educators, are in loco parentis.  It’s the prime directive for our profession – to do for our students what we would do for our own children.  Including the most vulnerable ones –like mine.

 

It’s time for every school district in this country, without delay, to adopt a SPECTRUM Alert for Schools.

The Bears in the Park: Anxiety and the Autism Parent

????????????????????“Worry is the thief of joy.” – Unknown

I read with interest the other day a post by psychiatrist Dr. Gail Saltz, “This Is You on Stress.”  Being stressed out all the time, I’m becoming increasingly aware of its effects.  Dr. Saltz says stress is an evolutionary thing, a fight or flight response triggered by a perceived danger.  In dangerous situations – such as the possibility of encountering bears in a park- it keeps us aware and can save our lives.  The problem, she says, is when you are removed from the danger but the fight or flight instinct is still going.  That kind of anxiety is harmful.  She goes on to suggest some strategies for breaking the cycle of unhelpful stress when danger isn’t nearby. I thought about that for a while and how to use those strategies to stop stressing and calm down.   I thought about those bears in the park.

And that’s when I realized.  It’s no wonder parents of severely autistic children are increasingly being diagnosed with anxiety disorders, PTSD, depression, etc.  It’s not because of their children.  No, our children give us just as much joy as any others.  It’s because there is rarely a time when you aren’t in the park looking around for all those bears.

What and who are these bears?  There are many.  Elopement, bullying, failure of school districts to provide an appropriate IEP, medical and dental appointments, unfamiliar situations, loud noises, lack of autism awareness, lack of autism acceptance, loved ones who don’t get it, judgmental stares and comments from strangers, inaccessibility from grocery store carts to Disney World, respite care, insurance battles, lack of appropriate housing for autistic adults –and on and on.

So we rarely leave that park.   And we stand – fight or flight response at the ready – clutching the hands of our children all the time.  While trying to live our lives in all the necessary ways.  Meeting the needs of other children.  Nurturing our marriages.  Paying bills.  Working.  Caring for older family members.  Taking care of ourselves – which, like this list, always comes last.  But we do all of these things while anxiously looking around, listening, and facing those bears when we encounter them.

I’d like to follow Dr. Saltz’s suggestions.  I’d like to try meditation, thinking myself calm, and reminding myself that I’m out the situation.  Except I’m not.  I don’t have the luxury of letting down my guard.  Because if I do, the bears are still there.  My child will not receive an appropriate education.  He may be traumatized by people not trained to work with autistic children.  Someone might forget to latch a door.  A door within minutes of busy intersections and bodies of water.  He might be treated as a disorder and not a child.  No, the only time I can relax is when he is safe in bed and the house alarm engaged.  Even then fears of my own mortality (who will take care of him?), his education, his health (feeding issues), and his future haunt me in those witching hours of worry.

The problem is these fears aren’t unjustified.  My anxiety isn’t occurring in the absence of danger.  These dangers are real.  Because this world is not ready to welcome my son.  A son who will one day outlive me.  A son whom I fear will not – if needed – be cared for by those with good hearts and a desire to allow him as much independence as he is able.  A child whom – in the wee hours of the night – I lie awake envisioning as an old man.  An old man – perhaps with no family of his own – lying in a bed and taking his last breaths with no one to hold his hand.

Yes, those bears are all around me.

I don’t want stress to win, but it’s ever present.  It steals from me sleep, laughter, and peace.  Joy?  It’s fleeting.  Found in bits and snatches – and always bestowed to me by my children.  Yes, it’s there.  But it’s often stolen by the thieves of anxiety and fear.

And in my darkest moments, I fear that lack of joy is turning me into a bear.  Someone who sometimes fails to appreciate the little things.  Someone who will fail to pass on joy to my children – who deserve that in their mother.

Some talk about a national autism plan.  Do we need one?  Yes.  Should it resemble any of the depressing and misleading suggestions we’ve heard so far?   No.  But we must begin to address the needs of children, adults, and families like mine.  We must begin to teach our citizens, our schools, our medical personnel, and our law enforcement how to interact with autistic persons.  We must learn new ways to teach, engage, employ, and live amongst those who experience the world differently.  And we must begin to plan for the futures of the most disabled on the spectrum.

Until then, I remain perpetually on watch for bears.

If you liked this post, you might also enjoy “It’s Not Personal: A Special Needs Parent’s Apology to Everyone She’s Going to Upset.”

 

 

Say the Word: On Delaying an Autism Diagnosis

autismwordSomewhere out there — right now — is a parent who just heard something she didn’t like. Someone who loves or works with her child suggested her precious, perfect baby may have a form of autism spectrum disorder.

There are signs. Her child is most likely developmentally delayed in significant ways. He may have walked late, often skipping crawling altogether. He may lack the fine motor skills other same-age peers have already mastered. Physically, he may lack the strength, balance, and coordination to do the typical things young children do, such as ride a tricycle, jump, run, or hold on tight when taken for a ride on daddy’s back. Perhaps most significant is a delay in speech. He may have developed a few words and lost them, or he may have never made any kind of vocalizations. In addition to not speaking, he may not understand the speech of others. And, if his name is called, he may not consistently respond — if he responds at all.

In addition to developmental delays, he probably has exhibited some quirky behaviors. He may not play with toys appropriately, preferring spinning, lining up items, or flicking strings or non-toy objects. He may not be able to tolerate certain textures, touches, sounds, or lighting. He may throw sudden tantrums that go far beyond any prior conceptions of the word. He may appear to be present physically — but live in a world of his own. Or he may not have many developmental needs at all, yet be unable to connect to others, read social situations, or tolerate change of any kind.

And though his mother probably already noticed these delays and odd behaviors, she is angered when the subject of autism inevitably comes up. She thinks she has good reason.  Continued on HuffPost Parents…

Flappiness Is on the Huffington Post!

I submitted this to Huffington Post — and then decided they must not have liked it, jumped the gun, and posted it here a few days later.  Today, HuffPostParents published it!  (Which was a real thrill.  It’s been on my Writer Bucket List.)  So -just  in case you missed/understandably ignored my email – here’s my latest.  😉

 

Dear Friend Whom My Autistic Child Just Rebuffed

callumtackleI know.  I saw.  You, friendly person that you are, walked up to my autistic child in public and tried to say hello.  And he got really, really upset with you.  I saw your concern.  Felt your embarrassment.  Knew you never meant to upset him.

When I see you, you ask about him.  When you’ve met him before, you always make a point of speaking directly to him – even when it seems he’s not paying attention.  You’ve even had really positive interactions with him in the past.  You did everything right.  You didn’t go rushing up or speak too loud to him.  You didn’t put your hands on him without being welcomed to do so by him.  You follow me on Facebook, read about the cute things he does, and celebrate his successes.  You’re a good friend and a great cheerleader.  I appreciate you.

And because of that, I don’t want your apology for “upsetting” him.  That’s because you didn’t.  It’s likely several things did, but it wasn’t you.  He was just overwhelmed a bit by the world – new sounds, sights, and experiences.  He was busy trying to process all of those when you happened to innocently walk up and try to interact.  For whatever reason, that’s when his pot boiled over.

He wasn’t judging you, disliking you, or even declaring how he feels about you in the future.  He was simply over capacity and expressed it the only way he knows how to – with a big fat “no more right now.”  Only he doesn’t yet have those words.  He isn’t able to convey exactly what was too much.  He meant to say, “I have had enough.”  But it wasn’t you.  It just seemed like it.  And I could tell by your red face that it felt like it too.

So, I’m begging you.  Please don’t slink away and give up on getting to know him.  Please don’t feel that he just doesn’t like you.  Please don’t feel like you did anything wrong.  He may have been overwhelmed emotionally and sensory-wise, but his mind is quick.  He knows the difference between someone who is good to him and someone who is not.  If you continue to gently engage with him when you see him, he’ll learn that you’re not to be feared –and you’ll learn there is nothing to fear from reaching out to him.  Before you know it, you’ll have a little buddy who expands your world – just as you will expand his.

I want you to know that your efforts to engage with my child are beautiful to me.  Too many people are afraid to try – afraid to “upset” him.  Afraid to simply ask what’s the best way to get to know him.  But you?  You put yourself out there and sent a message to our family, to him, and everyone in the immediate area – that he is worth knowing.  Not everyone knows that.  But you do.

And that’s why I want so very badly for him to get to know you.  Because clearly you are worth knowing too.