Monthly Archives: January 2012

My First “Meme” – Autie Nuggets!

From Wikipedia:  Internet Meme – An Internet meme is an idea that is propagated through the World Wide Web. The idea may take the form of a hyperlink, video, picture, website, hashtag, or just a word or phrase, such as intentionally misspelling the word “more” as “moar” or “the” as “teh”. The meme may spread from person to person via social networks, blogs, direct email, news sources, or other web-based services.

I am ashamed to admit that, prior to yesterday, I had never heard of this term.  But my Facebook friend MarsupialMama (or Twitter) suggested to me that we start one, based on an idea I had this morning. My idea was born this morning, following serving my food-averse autistic toddler chicken nuggets for breakfast.  Just like dinner last night.  Just like the previous lunch.  He, like thousands of ASD kids, has severe food aversions.  At this point, he has eliminated almost every food he used to eat, and we are down to chicken nuggets and various forms of bread.  He will not eat beans, rice, pasta, fruits, vegetables, cheese, or even ice cream.  His food must be dry and either round or square.  I know I am not alone in this.  So I got to thinking.  Here’s my idea, from my Facebook page:

The Autie Nugget 

“For you entrepreneurial types, I have a GREAT idea: Speciality chicken nuggets! Seriously. Chicken nuggets containing veggies, beans, whole grains – lots of varieties. You could even do a chicken nugget shaped fruity type of dessert [Fruit Fritters]. Frozen, non-toxic, [vitamin-enriched] and ready to heat. I’ll even name it for you – Autie Nuggets. If you’ll perfect, market, and ship ’em in dry ice, I won’t even ask for a portion of the profits. Admit it. I’m brilliant. And if you tell me it has already been invented and is currently being sold, I’ll accept my non-brilliance and declare that guy brilliant instead.  [Furthermore], if somebody, [based upon our plea], invents and sells them – and my son eats them – I will give free advertising [and promote via social networking] for life on my blog. No, REALLY.” 

Suggestions:  

1.  Smell is going to be important.  If it doesn’t smell like a chicken nugget, a lot of ASD kids will refuse to eat it.

2.  Shape is non-negotiable.  It must resemble a standard chicken nugget.  No variations possible, as- again – ASD kids will refuse to eat it.

3.  Color must be standard as well.  It needs to be golden, with a crispy outer surface.  And the coating will need to stay on the nugget.  

4.  The texture will have to also resemble a firm chicken nugget.  If it falls apart, ASD kids will refuse to touch it again.  

5.  One reader suggested the veggie blend remain in the center of the nugget.  Not sure if that’s possible, but it seems like a good idea.  I’m thinking the outer layer will have to be chicken for the outside texture to be right.

So, readers and bloggers, what do you think?  Want to help spread the word for someone to invent these?  It could change the nutritional intake for autistic children with severe food aversions everywhere.  It’s a call to action – somebody, somewhere, please create and sell a healthy version of the Autie Nugget!

Bloggers:  If you will promote the idea, I’ll add you to my blogroll.  Yes, I know that’s kind of an anti-climactic incentive, but it’s all I’ve got to offer you.  LOL  😉

Giveaway Winner!

‎Our “What I Wish I’d Known About Raising a Child With Autism” book giveaway winner is: Robin (Last name unknown as of yet)! Her winning question was: “If you could give any advice to parents on how to teach our children to cope with being teased and bullied for being “different”, what would it be?”

Robin’s question will be featured in my upcoming Autism Panel Interview featuring 5 adult individuals with ASD. Details coming soon.  (I’m really excited about this interview.)  Congratulations, Robin. Your book will be on its way soon – as soon as you check your email. 🙂

Why I Believe in God (The Non-Sanctimonious Reason)

A few weeks ago, a dear atheist friend of mine asked me why I believe in God.  Not in that “Religion is so stupid and therefore so are you” kind of way.  But honest curiosity.  She finds me to be a rational, non-superstitious, and free-thinker type and simply wondered what my personal reasons are for a belief in God.  I gave her a few of my reasons, but I have been thinking about it a lot lately.  And I’ve been asking myself what is my proof.

I wish I could say that I have always been a religious 100 percenter. You know, one of those people who is fortunate to have never doubted.  I have always said I believed, but knew I had paralyzing suspicions that our time on Earth is what it is – just time on Earth.  Just here, then not.  I was reasonably certain of my faith.  But “reasonably certain” is enough to make you feel like a hypocrite standing in church.  “Reasonably certain” is enough to make you forget to pray.  “Reasonably certain” is enough to keep you staring in the darkness at 3 a.m., trapped in the witching hours fear and worry.

I remember the day my autistic son first  flapped.  (Arm flapping is a common behavioral indicator of autism.) And it wasn’t the excited flapping that just about every toddler does when excited.  You see, I knew the difference.  Unless you have seen autistic flapping before, you won’t know.  But once you have, you just recognize it.  It even has a sound.  It reminds me a little of the sound of a bird I once spent a cool fall morning with in the mountains.  It was so quiet sitting on the deck of the rental cabin that I could actually hear its wings flapping.  One of those moments forever etched in your mind.  So was this.  The house was quiet, and I watched his little arms flap away.  And I knew.  I mean knew.  For I’d seen it before.

I woke up at 2 a.m. and couldn’t go back to sleep.  That witching hour of the mind and heart, when all your mental defenses are down, and suddenly – by yourself with no one to sugarcoat it – you gain clarity.  The kind of clarity that you can’t think about anything else.  The kind that shakes you to your soul and reveals to you your true self.  And I crossed my arms tightly, and began to rock and repeat, “Please, no. Please not my baby.  Not autism.  Please anything but this for my baby.  Please not my child.”

I am not a crier.  I rarely well up at funerals.  I cried after the death of my grandmother.  And I cried all during the last five days of my stepmother’s life.  But it takes a lot.  And, lying there awake in the middle of the night beside my sleeping husband, I began to bawl.  There were no distractors from my fears, and it all came out.  And I can tell you that in the darkest moment of my life, of any human being’s life – fear for your child – that without realizing it, I dropped any traces of doubt as I begged.  I mean really, really begged.

I had begged God for the attention of some teenage boy in my girlhood. I had begged God for a job offer. But you haven’t begged until you have begged for the life of your child.  No, I wasn’t begging for his literal life.  But most of the autistic children I had seen were  never going to achieve self-sufficiency.  At that time, I didn’t see this as any kind of life at all.  I see it differently now, but not in that dark hour of grief.

I begged God.  And then I stopped and took a deep breath and went to the sink and washed my face.  (My eyes were so swollen the next day that I had to tell the people looking at me strangely that I had a sinus infection.)  That was the night that I acknowledged the death of a carefree childhood and accepted the tough years that were coming to us.  Of course I had heard of people who functioned beautifully in a great environment and who went on to college and family life.  But I also knew the statistics.  50% don’t speak.  Some cannot communicate their own basic needs. 80% will remain in their parents’ homes in adulthood.  Pardon me for saying so.  But those odds suck.

I realize that was the moment I was no longer agnostic.  I believed –because of science.  Because nature is science.  Instincts are a part of nature.  And those instincts serve a purpose.  Instincts kick in during moments of fear. And my instincts reached out — toward God. I have strong respect for our animal instincts.  Since human beings are animals, we, too, have instincts that, like animals, can save us in times of trouble and danger.  We, too, follow Mother Nature. So why would nature push me toward a God that wasn’t there?  In an odd way, it is because of science that I believe in God.  A roundabout way to get there if there ever was one.

My faith is not the kind of faith that makes me quote scripture at people I judge to be unworthy of salvation.  For I am not convinced that any man’s version of God is flawless.  I just know that I believe in Him and that belief gives me comfort and peace.  I don’t think my atheist friends are evil, and I hope they don’t think I’m stupid.  And I don’t believe that they and others like them are all conspiring to divest me of my own beliefs.  Instead, I’m fortunate to have some very cool friends on both ends of the religious faith spectrum, so I’m blessed indeed.

So, my very dear atheist friend – you asked me why.  And there it is.  I believe that the need for a higher love and the search for immortality is instinctive – a God Instinct, if you will.  And since instincts are natural, then I believe God to be natural as well.  I also happen to think He gets a bad rap from some of his followers, so I won’t ever blame you for not wanting to join them.  You think there is no Heaven.  And I think you are such a wonderful person that one day we’ll together discuss your astonishment at being in Heaven after all.  Yet, I don’t think either one of these beliefs must negate our friendship.

I have said many times that autism is a thief.  Yet it is a thief that sometimes leaves behind unusual and surprising gifts.

For me, faith is one of them.

P.S.   Please.  No fire and brimstone comments here today.   You may mean well, but this isn’t the place.  It’s an autism blog.  And all of my readers are welcome and loved here.  🙂

So, what unusual or surprising gifts has autism give to you? 

Book Review: Thinking Person’s Guide to Autism

Note:  Steve Silberman, contributing science editor at Wired Magazine (and a fan of my blog – what an honor!), emailed me with a suggestion that I might want to review Thinking Person’s Guide to Autism with an offer to arrange a free review copy.  Mr. Silberman was enthusiastic enough about this book that he named it his Book of the Year, so I happily agreed.   Other than the review copy I received, I have not received any incentive or offer of blog promotion in exchange for my review. 

Thinking Person’s Guide to Autism, edited by Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham, and Carol Greenburg is aptly named.  This is no Autism Spectrum Disorders for Dummies.  Don’t misunderstand me.  All of you are more than capable of reading and digesting this excellent tome.  And you should.  This book is the definitive work on autism for parents, service providers, teachers, and the general public.  Everyone in the autism community should read it.  Seriously.

Thinking Person’s Guide to Autism began as a website.  A website dedicated to educating and dispelling myths about autism.  They (the editors) willingly acknowledge their frustration with a growing suspicion of the role of science in uncovering the mysteries of ASD.  These are a group of women who are accomplished writers, thinkers, activists, directors, scientists, and educational experts in their own right – who all happen to have been affected by autism, either through their families or their professions.  Nope.  No dummies here.   These are individuals who have gone and done the dirty work of autism education by actually reading all of those scholarly and scientific articles, books, and theses containing large amounts of statistical data, genetic research, and other topics reminiscent of torture to an English education major such as myself.  (I tip my hat to them and choose to dazzle the world with my ability to explicate metaphorical relationships instead.)

Yet what they chose to do in compiling  Thinking Person’s Guide to Autism was not to overwhelm the average autism book reader with such difficult material.  Instead, they went into the trenches of the autism community – special needs mommy bloggers, teachers, autistic individuals, writers, parents, nurses, therapists, and the like – and gathered the best articles they could find which represent the truth of autism.  The truth – not media-hyped stereotypes or obscure snake-oil salesmen.  Truth about what living with autism really means.  About the nuts and bolts of what you as a parent need to know to help your ASD child navigate this world.  About public perception, bullying, and grief.  About finding  joy, designing an IEP, sensory issues, and potty training.  About cutting yourself some slack and avoiding being suckered.  About preparing your will and finances for an adult child requiring lifelong care.  About neurodiversity, the causes of autism, and getting the most out of therapy.  About autism and puberty, mature autism, and medications.  In short, there isn’t much about autism this book doesn’t eloquently and concisely address.

And, despite all of the information Thinking Person’s Guide to Autism provides, they still have selections that will move the heart – and often mind – of anyone affected by ASD.  This is a book that will make you laugh, cry, nod your head, resolve to learn more, and question or verify your own convictions.  Most importantly, they manage to do it with respect to readers who may not share the same views –and compassion for those whose grief is new and whose walk with autism is not as self-assured.

There are 74 articles in Thinking Person’s Guide to Autism.  Although all of them are excellent, these are the ones I bent the page corners on.  (Shhh!  Don’t tell the Librarian Police.  They’ll make me turn in my librarian badge.):

“Bring Everyone Out” by Kyra Anderson

“What Now?  Ten Tips for Families with a New Autism Diagnosis”  by Squillo

“Getting to Know Your New Neighborhood:  Reading Out and Building a Network” by Susan Walton

“Welcome to the Club” by Jess at Diary of a Mom

“On Autism and Self-Compassion”  by Kristin Neff, PH.D

“An Open Letter to Special Needs Professionals” by Pia Prenevost

“Autism and Environmental Chemicals:  A Call for Caution” by Emily Willingham

“Why My Child with Autism is Fully Vaccinated” by Shannon Des Roches Rosa

“The Autism Path” by JeanWinegardner

“Buying Hope”  by Jennifer Byde Myers

“The Keeper:  A Tale of Late-Childhood Asperger’s Diagnosis” by Mir Kamin

“The Crucial String” by Liane Kupferberg Carter

“Grieving the Dream and Living What Is” by Rachel Cohen-Rottenburg

“Shifting Focus:  Eight Facts About Autism the Media Is Not Covering” by Holly Robinson Peete

“Autism Contradictions” by Jillsmo

“Creating a Special Education PTA” by Jennifer Byde Myers

Thinking Person’s Guide to Autism is a must-have for any autism library.  Not only is it jam-packed with valuable information, it is a well-edited compilation of very well-written pieces and includes a fantastic list of resources in the appendix.  This is not the kind of book you read in one sitting.  Because you can bounce around to any article, it makes an excellent bedside table book to be read in small chunks – allowing you an opportunity to savor, think about, and further research or care/therapy plans.  Run right out and get this one.

Note:  Proceeds of this book go to The Myers-Rosa Foundation, a non-profit dedicated to autism education, advocacy, and community support.

 

So, have any of you read Thinking Person’s Guide to Autism?  If so, what are your thoughts?


The Island of Mispurchased Toys

“Why must the corners we turn be so sharp?

Why must I keep all these things in my heart?

Why must I silently give in to time?

Forfeit a childhood to boxes and twine.”

-Ann-Jo Hale

Twenty-five years ago, my mother wrote a song about the day she packed up my Barbies and toys in order to redecorate my bedroom (upon my turning thirteen).  This is one stanza that I have always remembered for some reason.  Perhaps because I have a memory of her sitting on the floor next to my bed, carefully packing items she thought to save in underbed storage boxes. 

Yesterday afternoon, my good friend Sandy came over to help me whittle down the kids’ toys in preparation for a room reorganization and makeover. 

I expected to feel sad and a little reluctant (thus the need for Sandy to keep me in line).  I knew it would be hard to part with toys I associated definite memories of my little one’s baby and toddlerhood.  I didn’t want to give away my daughter’s first babydoll, the first blocks she stacked, or her favorite chunky books. 

But what took me by surprise was the sheer number of toys of which the only memories I have is of buying them- for my son.  Buying them in the hope that one would be just the right toy to trigger Callum’s interest.  Unwrapping them and setting them out for him, only to find them ignored.  Feeling bad for the gift-giver for my child’s unwillingness to even look at his present.  Memories of putting them on the shelf and watching him play with a plastic hanger instead. 

I know all the correct answers to give people who ask why he is playing with some non-toy household item.  I have read how to engage him with the items he is interested in.  And I know how to find companies specializing in high-interest toys for special needs children. 

What I don’t know how to explain to someone is how it feels to acknowledge that your little boy does not know how to play.  I don’t know how to explain that sadness in a parent’s heart.  And I don’t know how to head off those moments of unbearable clarity when watching him throw a toy truck down over and over again — away from the other children happily playing with all of the available toys in the room.  Those moments when the walls close in, my mind tunes out the chatter and background noise, and all I can see is that truck landing over and over again. 

I’m not so good at that.  I don’t know if it is possible to convey. 

It has been nearly fifty years since King Moonracer and A Dolly for Sue tugged at the hearts of movie watchers who empathized with those unloved toys from the Island of Misfit Toys.  Everyone watching Rudolph the Red-Nosed Reindeer wanted those toys to be played with and loved.  Not because the inanimate objects mattered so much themselves.  But because there is an incredible nostalgia for those carefree moments of childhood when building blocks become castles and empty boxes rocket ships hurtling toward Mars.

These are the moments when I am most angry with autism.  Yes, the autism spectrum has bestowed many gifts upon the world.  But stealing the play of childhood is not one of them.  Autism can be a thief – leaving behind memories of unfulfilled play- dump trucks, puzzles, and stuffed animals doomed to exile on the Island of Mispurchased Toys.  Toys that dredge up only memories of dashed hopes for birthday parties and Christmas mornings. 

And it leaves behind mothers and fathers, putting those toys away in boxes to give to somebody else’s children -children who can and will play with and cherish them.  Castles that will not be built and missions to Mars not bravely accomplished. Sounds of “Vroom, vroom!” that will never be uttered.  And evildoers not vanquished.    

This is but one truth of many in the story of autism.  

That silence can be overwhelmingly loud.

13 Cool or Helpful Gifts to Give a Special Needs Parent

These kinds of lists typically come out in December.  But it occurred to me that gift-giving happens throughout the year.  You may have a child, sibling, or friend who parents a special needs child and are wondering what kinds of things make nice gifts.  You may know of a special needs family struggling and wish there was something you could do to help.

Therapy, special foods, DAN doctors, regular doctors, medications, in-home services, diapers, special beds, special toys, listening programs, etc. cost money.  A lot of money.   If special needs parents aren’t made of money to begin with, it’s a killer.  When you take into consideration that many of us have other children (perhaps young children requiring daycare), money gets tight.

So what can you do to surprise some special needs parent in your life with gift they would truly enjoy or even a gift of help?  Well, I don’t actually know all special needs parents.  However, I have noticed that many of us are like-minded or, at least, in the same boat.  (At the very least, it’s a good place to start for my friends and family, right?)  You may notice that my list is made up of a lot of gift cards.  I’m a big fan of gift cards.  They can be replaced when lost.  And, they tend to get used for their purpose.  Give a mother plain old cash and she’ll get talked into giving it to her kids.  Give her a gift card and the gift goes to her.  Or dad as the case might be.   So, here’s what I’ve come up with:

1.  Gift card for family portraits.  When times are tight, we tend to put things like this off just a little while longer.  One of the best gifts I ever received was a session for my little one’s Christmas pictures. 

2. Diapers and wipes.  No, seriously.  Some of our children are still in diapers.  And some of our children will always remain in diapers.  They get even more expensive with each increasing size.  Some of our families use specialty diaper sites, so you might want to inquire and then look into purchasing a gift card.

3.  Grocery store gift cards.  Many of our kids are on special diets.  And even more of our kids have food aversion.  Some of them will eat only a few particular foods which can get expensive.  Since grocery budgets are one of the first things that people try to cut back on when saving money, a grocery gift card would be appreciated by families.

4.  A little pampering.  Find out who Mama’s hair stylist is.  Call her.  Ask what Mama would get done if she could have the works – color, highlights, brows, whatever.  Write a check for a gift certificate to be redeemed at Mama’s convenience.  This is the first thing I drop when money is tight.  And the thing I miss the most.  If this isn’t something she loves, she probably will still appreciate a gift certificate for haircuts for the rest of the family. 

5.  Drive-through/pizza gift cards.  Many of us have a lot of late days following various therapies and doctor appointments.  (My son has seven therapy appointments a week!)  On days like this, the last thing you feel capable of is cooking dinner.

6.  Theme park gift card.  A trip to a water park, Disney, etc. is a distant dream for those on a tight budget.  The opportunity to take one’s kids for a family fun day is something special indeed.

7.  An afternoon mani-pedi with a girlfriend.  This is one thing she won’t buy herself if funds are stretched.  Pure bliss.

8.  Movie theatre gift card.  This can be great for the whole family or just a date night for mom and dad.  Hard to go wrong here.

9.  iTunes gift card.  No, really.  Many special needs families these days have iPads and have to purchase the educational apps they download for their kids.  Even if they don’t, mom or dad may have an iPod, etc. that hasn’t heard a new song in a long time.  This is the kind of treat you forego when tightening budgets.

10.  Amazon or B&N gift card.  If mom or dad is a reader, then they might enjoy the treat of a new book.  It’s a splurge when times are tight, but a thrill for book lovers.

11.  Gift card to favorite sporting store, golf course, neighborhood pub, etc. for Dad.  Dads, too,  need time with their friends or an opportunity to enjoy their hobbies.

12.  Gift card to a nice restaurant.  For two.  Because date night is a needed thing.

13.  A night away in a hotel or B & B.   After all, sometimes tired mommies and daddies need reminders how they got these special children in the first place.  😉

So, Special Needs Parents, do you have any other suggestions for great gifts? 

Letter to My Autistic Child

“This is what we know, when you tell us of your fondest hopes and dreams for us:  that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.”

-Jim Sinclair “Don’t Mourn for Us”

Dear Callum,

I found this quote recently.  And it has haunted me for weeks.  Every time I look at you and think of the future, it echoes.  I don’t know what to think, and I don’t know how to feel.

Because in this man’s voice, I see you in twenty years.  And I would never want you to think this true of me.

When I found out that you were going to be a boy, I was afraid.  Not because I don’t love little boys.  I was afraid for what was an irrational reason.  I feared autism and, though it certainly happens to little girls as well, your chances of being affected by it are much higher if you are a boy.  I remember telling a friend that I could handle just about anything, but I didn’t think I could handle autism.  How ironic is that?

No, I don’t think God gave you autism to teach me any lessons.  My God doesn’t play games like that.  But I do think I knew something.  I must have somehow sensed you were coming and feared not being the right mother for you.  I now know that is ridiculous.  There is only one person in the whole world who could love you as much as I do.  Me.  You’re mine, and I couldn’t be any more proud of you.  Really.

So what exactly, you may ask, was I afraid of?

Well it certainly wasn’t not loving you.  Oh, how I love you.  And not in that “because of the challenge of raising a child like you I have grown so much as a person” kind of way.  (I don’t know why someone would feel that way.  Maybe their kids aren’t as cool as you.)  I wouldn’t trade you because you are the only you in the whole world and I could not imagine having any other boy.  There is no sweeter smile on this planet.  You are incomparably cute.  Your giggles, hugs, and kisses have no equal.  Everyone who meets you raves about what a sweet little boy you are.  Your soul is just magnetic like that.  Everybody who meets you loves you.  It doesn’t happen every day, but there are just some souls in the world like that.  You’re one of them.  And it makes me so very proud.

But, oh baby, how I do fear for you.  And it’s because I want so many things for you.  Yes, I know they may not be the things you want.  I know they may not be things you are wired to do.  But I want them for you all the same.

Some parents are guilty for wanting their children to fulfill their own dreams.  It is the classic battle between parents and their children.  The things parents want for their children vs. the things their children want for themselves.  The thing is, I’m not looking for you to fulfill my dreams.  I don’t believe that children are blank slates.  I think you come screaming into the world exactly the people you are, and that it is our job to help you be the happiest you you can be.  I just want you to have all of life’s options available to you.

I’ve traveled to foreign countries and met fascinating people.  I want you to be free to do the same.  I have studied and chosen a rewarding career.  I want you to have that same choice.  I have fallen in love.  I want you to have the interpersonal skills to find someone to share your life with as well. And, if it would make you happy, I would love for you to experience the same joy having your own child that you and your sister have given me.  I want you to be able to make friends.  I have been blessed by wonderful friends who are even closer than some family.  I want you to be able to read.  Reading open doors to new worlds and connects our minds to great minds of the past.  I want you to be self-sufficient.  I don’t want you to be dependent on anyone else’s possibly bad decisions on your behalf.  I don’t need you to be captain of the football team.  I won’t be proud of you for joining a fraternity or dating the prom queen.  As long as you are happy, you are free to choose any career from fixing cars to studying bee habitats.  Whatever floats your boat.  All I want out of life for you is for you to be content and have the ability to direct your own life.

But then I hear the echo of this quote and I become afraid all over again.  I don’t ever want you to feel that, because I want these things for you, that somehow I want a different son.  I love you just the way you are.   Yet, I am not going to lie and say that I won’t be sad if you can’t have these things.  Autism, in its severest forms, can be a thief.  And I don’t want anyone stealing from you and your potential for happiness.

You are like a traveler who inhabits worlds in two dimensions.  This world and the world of autism.  Some autistic people will never leave that other world.  They will not be able to travel freely between both places.  They don’t speak the same language we do.  And all we get are occasional glimpses through windows by which to get to know one another.

I know that other world is part of you.  And I accept that I will have to share you.  We’ll have to learn together how to find the right balance.  But know this.  I intend to do battle with that world.  Because though I plan to share you, I refuse to grant primary custody.  And it’s not because I find you less worthy living over there.  It’s simply because I want you here.  Pure, selfish – yet unconditional- love.  Mamas can be funny like that.  I know I may not win.  But the losing won’t be for lack of trying.  And, should that happen, I’ll keep fighting for access to come and visit you there.

I don’t ever want you to think that I am fighting you.  I will always want you to be you.   Autism is a part of you.  And, because I love you – all of you – I wouldn’t dream of trying to cut you in half.  But it isn’t all there is to you, baby.  The other part of you would have been you even without it.  That’s the part of you that needs to have free access to this world – to love, to friendship, to self-esteem, confidence, and self-actualization.  All I want is for you to be able to navigate both of our worlds.  I will fight for that –and for you.

But I am and will be proud of you for who you are.  Right now.

And on the day that you will one day read this.

(Giveaway) Book Review: What I Wish I’d Known About Raising a Child with Autism

In the interests of full disclosure, I asked for and received a free copy for review of What I Wish I’d Known About Raising a Child with Autism.   I did not receive any other compensation or promises of blog promotion for this review, nor am I keeping the review copy I received.  Following the review, I will provide a link to instructions for a giveaway of the same copy.  (Hopefully, the winner will not be offended by a gently used free book!) 

Bobbi Sheahan is one of the first people I met in the online autism spectrum community.  I began following her on both Twitter and Facebook and have enjoyed a friendly online connection with her.  Having read a couple of her guest posts and enjoying her no-nonsense style of writing, I suspected that her book would probably be quite good.  Since I am a people pleaser and, since I have taken a liking to Bobbi, I said a quick prayer following my request for a review copy that I would like it.  I was extraordinarily relieved (yet not surprised) within reading just a few pages.  It is excellent, and I am delighted to recommend it.

There are a lot of books about autism on the market these days.  They range from the dry and somewhat clinical to the sentimental and tear duct-activating.  The informational books tend to cover all aspects of autism from birth to adulthood.  That’s great –- if you are a little ways into your autism parenting journey.  But it can be overwhelming to those just starting out.  To those still in the early years, with toddlers and preschoolers.  And, often, they tell you all about autism behaviors and all the therapeutic things you should be doing with your child (again – somewhat overwhelming), but precious little about how to handle it in reality.  How to handle your own emotions.  Tips for making your life easier.  Suggestions for how to keep your sanity.  And how to know what is most important amongst the onslaught of information and reality overload.

That’s what What I Wish I’d Known About Raising a Child with Autism really is.  Bobbi Sheahan is that dear family friend who comes to your house on a day of crisis with a casserole in hand who takes your hand and says, “Stay calm.  It’s really going to be all right.  I’ve been through this too.  Here’s what you really need to know.”  Dr. Kathy DeOrnellas provides professional commentary throughout each section that reinforces and elaborates on each of Sheahan’s topics.  It’s a great combination that supports and informs without being condescending.

Sheahan, with honesty and humility, shares her own experiences beginning parenting an autistic child.  She assumes little background knowledge on the part of the reader and enlightens us on topics such as autism lingo, balancing between overreacting and underreacting, handling unsolicited advice, the importance of childproof locks, being kind to yourself, the effects of autism parenting on relationships and marriage, balancing a social life, as well as necessary information on typical autism topics such as food aversions, sensory issues, sleep problems, etc.

Being a quote lover, here are a few of my favorite quotes from the book:

“Going from ‘There’s nothing wrong here’ to ‘The sky is falling!’ can be jarring. Freaking out a bit is normal.  It won’t always be a shock to your system. You can’t measure your entire future – or your child’s-by the way you feel at this moment. Once you start to know where all of this is headed, it does get easier.”  -Bobbi Sheahan

“Don’t be afraid to reach out to other parents.  Nothing your child is doing is going to be any weirder than something their own child has already done.  Really.”  – Bobbi Sheahan

“You are the expert on your child.  I know more than you do about autism and I know lots of kids with autism, but you know more than I will ever know about your child.  Nothing you tell a professional about your child should be dismissed.”  -Kathy DeOrnellas, PH.D

If you are the parent of a child just being diagnosed on the spectrum, especially in the early years, do yourself a favor and get a copy of this book.  Highly recommended.

What I Wish I’d Known About Raising a Child with Autism Giveaway Information