Tag Archives: autism

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 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.”

 

 

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.

 

 

 

 

 

 

Prayer for the IEP

praying-hands-in-close-view_2247878Lord, this day means so very much.  This is the day decisions are made that will impact this special needs child’s life.  Some of those decisions will be good.  We might fail in others.  We will keep trying.  We will keep believing. And we will continue advocating. Today, we ask for:

 Calm – so that we may hear one another and communicate effectively.

Truth – for, without it, we cannot set a correct course.

Focus – so that we may avoid distractions and meet our goal.

Compassion – to acknowledge the needs of others.

Wisdom – to recognize when we need help and/or more information.

Strength – so that we may speak up for what is right.

Flexibility – to seek solutions that will benefit – first and foremost – the child.

Resolve – to carry out the plan we make, even when it becomes inconvenient.

ieptableAnd most of all…

Faith – in this child and our belief that he can learn and that we will make a difference.

May our minds and hearts remain open today –and we remember to place this child’s needs ahead of our own.

In this we pray.  Amen.

Hear Me Roar: Inspirational Songs for IEPs (a Playlist)

noteThanks so much to my wonderful followers on Facebook for contributing to this playlist.  There are some great suggestions — including several I’d never heard before.  Play this in the days leading up to your child’s IEP, mediation, resolution, etc. — and go advocate for your child!

Let me know if you think of any songs I should add.  :)

Why Autism Families Are So Angry with Disney

walt-disney-castle-20299809Life for an autistic child is full of no’s.

No, those children don’t want to play with you.

No, you won’t be able to tolerate this restaurant, theater, store, etc.

No, we can’t/won’t/don’t service kids like you.

No. No. No.

As parents of severely autistic children, we hear a lot of no’s as well. You get so used to all the no’s that they cease to surprise you anymore. You expect them. You are prepared to fight them, but lose a lot. And you steel your heart for many disappointments.

Like, for example, the disappointment you feel when your child’s school pictures arrive — and it’s evident the photographer made no effort to spend the extra time necessary to get a good one. The expression is awkward, sad, or simply…vacant. Every year. Every time.

Or the disappointment you feel when your child cannot tolerate the sensory assault of participating in scouting, youth sports, children’s gyms, or art classes. And you have to carry him out the door screaming, suffering, and worse — brokenhearted.

The disappointment you feel in your fellow man when they stare, become annoyed, or make comments about your child’s autistic behaviors. Behaviors your child cannot control. Behaviors that still don’t prevent your family from needing to run errands, go out in public, and have fun on occasion.

And so you grow thicker skin, and you try to help your child to do so as well. You tell yourself that the no’s don’t matter. You try to smile when well-intentioned people tell you that you “must be a special person” to be given this child. But you don’t feel very special. You feel helpless. You see your child trying so hard to navigate a world that he cannot fully access. You see the future — and all the no’s that will certainly be coming. All the normal expectations of college, marriage, children — that aren’t necessarily in the cards for your beloved child. You try so hard to make every moment as beautiful and wonderful as you can.

Because — in the dark hours of worry — you sense the need to fill your child’s memories with as much joy and love as you are able. Because you know there will come a day when you are gone. And there might not be anyone left who will care if your child receives more than just shelter and food. There will come a time when there are no more special days just because.

Knowing this is coming, you seek out people, organizations, and opportunities so that your child can have as many iconic childhood experiences and joys as he is able. You learn to embrace the yes’s and those rare days in which your child gets his heart’s desire. You learn to savor present joy when you can — while simultaneously mourning the joys that may never be. Your entire family becomes skilled in adapting. Because the world adapts little — even for little boys and girls besieged and overwhelmed by it.

Recently, special needs families have been disappointed again.  Continued at What to Expect…

The Heartache of Haircuts – On Sensory Processing Disorder

haircutToday, I hurt my child. Yes, you read that correctly. I physically restrained him, hurt him, and made him cry. And he is only four years old.

Why would I do such a thing, you might ask. The answer might surprise you.

He needed a haircut.

Did I beat or harm him in so many of the awful ways adults choose to brutalize their children? No, of course not. I love him. Like most of you, I would gladly give my life for him.

But, today, he needed a haircut. A haircut he didn’t want — not because he is incorrigible. It’s because he’s autistic, and many children with autism cannot tolerate the experience of a haircut.

A while ago, a story made the rounds of Ashley Bays, mother of an autistic two-year-old son. She took her little boy to a salon to get a haircut. When her son began screaming and reacting to the haircut, the salon owner came out and loudly berated Ashley for her son’s disruption of her salon. In tears, the mother apologized and explained her son’s autism. The stylist had to finish the child’s haircut on the sidewalk…Continued at What to Expect.  

I May Be Oversharing about My Special Needs Child, and That’s Okay

autismscrabbleI write about my children — in particular, my autistic child — on the Internet. I write about them and share my own experiences in raising them — for complete strangers to read. My joys, mistakes, successes, grief, guilt, self-doubt, and even those dark, middle-of-the-night moments of all-encompassing fear. I write about it all. That’s me. I’m a special needs parent blogger.

And there are some folks out there who take issue with it.

There are those who question the wisdom of sharing my child and my life with the whole world. On the surface, my actions seem unwise. Why would I “overshare” with the world? Why not just find real-life friends and support? Why do I put myself “out there”?

Well, just as the world isn’t an easy place to be for those with special needs, it often isn’t much kinder to their parents. A hundred years ago, parents of special needs children were likely to have larger families — sisters and brothers who helped with the daily needs of the family and home. Because people started their families earlier, there were often multiple generations able to help out. More aunts, uncles, cousins, and grandparents to call upon.

Yet, special needs families today aren’t usually so fortunate. Many of us are spread across the county — far from family. Many, due to the extended start of childbearing, no longer have the wisdom and comfort of our mothers, aunts, grandmothers, and other mothers who’ve made this journey before. We don’t all have the support of a church family or neighborhoods where we all know each others’ names.

So, special needs parents (and all parents really) find themselves adrift in a society in which, “How are you?” has no more meaning than “Hello.” We are isolated, with no one to tell us that we are doing it right, that we might try this, or that it isn’t our fault. Special needs parenting is a lonely journey for so many of us.

The Internet has changed that somewhat. In the last two years, I have interacted with thousands of other special needs parents. Those who are like me — just starting out and wondering if they are going to make it. Those a few years in — who share resources of what helped them not so long ago. Those whose children are grown — who reach out with a gentle pat and say, “Honey, you’re doing just fine. What you are feeling is normal. It’s gonna be okay.” All of them — all of them — sustain me and others like me. They are the community we need and cannot always find locally. They connect us and remind us of a basic human need — to know that we are not alone.

There are some who question the loyalty of a parent who would “violate her child’s trust” by exposing his needs and differences to the world. Why would I choose to share that which Continued at WhatToExpect.com…