Category Archives: Special Needs

Book Review: Letters to Sam: A Grandfather’s Lessons on Love, Loss, and the Gifts of Life, by Daniel Gottlieb

Letters to Sam: A Grandfather’s Lessons on Love, Loss, and the Gifts of Life 
by Daniel Gottlieb 
Sterling Publishing Co.
2006
176 pages 

There’s something powerful in a personal moment of vulnerability, of difference, of change or of broken spirit, when you find another soul who says, “Me too.”

Sometimes that person is a friend or a teacher. Sometimes it is a stranger. Sometimes, a relative.

Daniel Gottlieb is a Philadelphia-based psychologist, family therapist, columnist, and author. When Dan talks with his clients or writes about coping with life’s changes and unexpected turns, his insights come from a deep well of personal experience.

More than 25 years ago, Dan became a quadriplegic after an automobile accident paralyzed him from the neck down. As most of us would, he thought his career – and his life – were over, that he didn’t have anything left to give.

He was wrong.

Sometimes we don’t understand the reasons behind the circumstances in our lives. In Letters to Sam, Dan shares the moment he knew he would be able to continue living, but this memoir’s purpose is to show that there is sometimes even more of a greater reason than may readily be apparent.

For Dan, that reason is his grandson Sam. Like many grandparents, Sam is the very joy and light of Dan’s life – a reason to keep living in spite of adversity; however, theirs isn’t like most grandparent-grandson relationships. At 14 months old, Sam was diagnosed with PDD-NOS (Pervasive Developmental Disability), a form of autism.

(My boy was initially diagnosed with PDD-NOS shortly after his 2nd birthday.)

Daniel Gottlieb knows a little something about the frailty and unexpected nature of life. While he hopes he has many years together with Sam, he knows more than others that things can change in a matter of seconds. Thus, the concept of Letters to Sam – a touching book that is exactly that: a grandfather’s words of wisdom to his grandson about how to survive (no, thrive) in a world that may not always be too kind to people with disabilities, about embracing life and keeping hope, about making peace with the past, and ultimately, about finding acceptance.

 

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Book Review: The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism, by Naoki Higashida

The Reason I Jump

The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism, by Naoki Higashida 
Introduction by David Mitchell
Translated by KA Yoshida and David Mitchell
Originally published in Japan by Escor Publishers in 2007
Published in the US by Random House, 2013
135 pages

Before reading The Reason I Jump, I hadn’t been aware of the reaction this book was getting from the autism community. Like similar books written by or about people on the autism spectrum, this one evokes powerful emotions and viewpoints, dividing readers into two camps.

There are those who believe it is “a one-of-a-kind memoir that demonstrates how an autistic mind thinks, feels, perceives, and responds in ways few of us can imagine” (as described on the book jacket) and who marvel that Naoki has achieved this at all.

That’s because “Naoki’s autism is severe enough to make spoken communication pretty much impossible …[b]ut thanks to an ambitious teacher and his own persistence, he learned to spell out words directly onto an alphabet grid. A Japanese alphabet grid is a table of the basic forty Japanese hiragana letters, and its English counterpart is a copy of the QWERTY  keyboard, drawn onto a card and laminated. Naoki communicates by pointing to the letters on these grids to spell out whole words, which a helper at his side then transcribes. These words build up into sentences, paragraphs, and entire books.” (pg. xiii)

It is in this process – and translation – that there becomes the tendency for a bit of wishful thinking to come into play, writes Sally Tisdale, in her excellent New York Times review (and one that I agree with) of The Reason I Jump.  Especially so when the translators are themselves the parents of a nonverbal child with autism, as KA Yoshida and David Mitchell happen to be.

“…but it was his explanations about why children with autism do what they do that were, literally, the answers that  we had been waiting for. Composed by a writer still with one foot in childhood, and whose autism was at least as challenging and life-altering as our son’s, The Reason I Jump was a revelatory godsend. Reading it felt as if, for the first time, our own son was talking to us about what was happening inside his head, through Naoki’s words.” (pg. xiii-xiv) ~ David Mitchell, in the introduction to “The Reason I Jump”

My desire and intent isn’t to point fingers or make unsubstantiated allegations. Those aren’t my issues with this book. (We’ll get to them in a minute.) In fact, David Mitchell’s introduction was my favorite part of the entire book. It was an excerpt from this introduction that made me curious about The Reason I Jump before seeing it at the library, and I was again gripped by Mr. Mitchell’s words as I re-read them during my lunch break at work. You can tell his is a life of caring and loving someone with autism, that he knows this life intimately well.

However, there are portions of this book that are … eyebrow-raising. 

The Reason I Jump is written in an interview/question and answer format, and also includes drawings and some original creative writing pieces of Naoki’s. I can only surmise that the writing was included to support the premise that a 13 year old boy is capable of writing things like this: 

“But for people with autism, the details jump straight out at us first of all, and then only gradually, detail by detail, does the whole image sort of float up into focus. What part of the whole image captures our eyes first depends on a number of things. When a color is vivid or a shape is eye-catching, then that’s the detail that claims our attention, and then our hearts kind of drown in it, and we can’t concentrate on anything else. 

Every single thing has its own unique beauty. People with autism get to cherish this beauty, as if it’s a kind of blessing given to us. Wherever we go, whatever we do, we can never be completely lonely. We may look like we’re not with anyone, but we’re always in the company of friends.” (pg. 59-60)

and

“Q39: Why do you like being in the water? 

We just want to go back. To the distant, distant past. To a primeval era, in fact, before human beings even existed. All people with autism feel the same about this one, I reckon …” (pg. 71)

The emphasis above is mine. Those of us who have traveled along the autism spectrum road with a loved one know the mantra all too well: if you’ve met one person with autism, you’ve met one person with autism. It’s called a spectrum for a reason.

My concern with The Reason I Jump  is how Naoki often claims to be “speaking” (for lack of a better word) for everyone who has autism. It makes me nervous when one person appoints him or herself the spokesperson for all who are afflicted with a condition that has so many variables and differences as autism. Now, since Naoki was 13 when he wrote this book, that’s forgivable but there are a lot of people who are putting much stock into his statements and ascribing them to ALL persons with autism. That, quite frankly, is worrisome.

“Q47: Would you give us an example of something people with autism really enjoy?

We do take pleasure in one thing that you probably won’t be able to guess. Namely, making friends with nature. The reason we aren’t much good at people skills is that we think too much about what sort of impression we’re making on the other person, or how we should be responding to this or that. But nature is always at hand to wrap us up, gently: glowing , swaying, bubbling, rustling.

Just by looking at nature, I feel as if I’m being swallowed up into it, and in that moment I get the sensation that my body’s now a speck, a speck from long before I was born, a speck that is melting into nature herself. This sensation is so amazing that I forget I am a human being, and one with special needs to boot.” (pg. 88)

Back when he was first diagnosed with autism, my son hated the beach. He refused to go near the ocean, preferring to pace along the shoreline shrouded in a towel like a devout monk. While other toddlers were gleefully building sandcastles and jumping in the waves, my boy (and we) walked back and forth, back and forth, back and forth, dragging our expectations of the perfect family beach vacation behind us.

It’s fair to say that we weren’t a friend of nature during those years.

My point is that it’s tempting to read The Reason I Jump as a position paper about what all people with autism think, especially if you care for and love a child who is nonverbal, but that its dangerous to view it exclusively in that light. Unfortunately, that’s how this book is being marketed.

Instead, it should be taken for what it is: a prompt to walk even more closely with the people in our lives with autism to see the prisms through which he or she uniquely views the world. 

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cycles

Bike Camp - Day 4

Boo riding a two-wheeler for the first time outside at Bike Camp
July 25, 2013
photo credit: Melissa Firman

“I’ve been told and I believe
That life is meant for livin’
And even when my chips are low
There’s still some left for givin’
I’ve been many places
Maybe not as far as you
So I think I’ll stay awhile
And see if some dreams come true.” 

“Cycles” ~ (which happens to be one of my all-time favorite songs ever), written by Gayle Caldwell, sung by Frank Sinatra

Three seconds after I snapped this photo at Bike Camp today, my boy crashed into the guardrail.

Before that, though, he was more than excited to finally be riding the two-wheeler outside. He did great on the first day of camp and on Day 2 during Tandem Tuesday. Wednesday’s “Launch Day” with him being on a a two-wheeler for the first time was awesome (and captured on video). He couldn’t stop talking about it ALL. DAY. LONG. 

“I feel like a MAN!” he bellowed, puffing out his 4’4″ frame at the thought of having mastered the bike.

So today, after a mere 20 or so practice laps around the indoor track, our group of iCan Shine instructors, parents, volunteers, and folks from The Children’s Institute of Pittsburgh headed outside into a pinch-me-I’m-dreaming spectacular 70 degree-Pittsburgh-summer-day.

As these things tend to do, the crash happened almost instantly, almost in slow-motion. He took the left turn a bit too wide, was going down the incline a little too fast. My boy slammed into the guardrail, doubling over and holding his chest.

I’m not a reactionary parent. I don’t fall to pieces in such instances. Upon realizing that there wasn’t any blood and that nothing was visibly broken (except, we would later discover tonight, bent glasses), my first thought was, strangely, of our NICU days nearly a dozen years ago.

Maybe I have the Royal Baby Prince “Curious Boy” George on my mind (although I’m kind of disinterested).

Or maybe I was still thinking about the world’s first test-tube baby turning 35 and remembering how sci-fi that once seemed, having little idea how that very technology would bring me my own little cyclist.

Or, maybe it has to do with a bunch of thoughts crashing together.

My boy got right back up on the bike and finished the camp session with a few more practice laps indoors, riding around the track. And I was so incredibly proud of him for that, for holding it together and being able to somehow find it within himself to do that.

It wasn’t without its slight setback, though. He’s convinced that outdoor terrain isn’t for him after all, that he’ll be just fine sticking to the indoor track, thank you very much. Maaaaaaaaybe he will ride in our driveway. He’ll see.

“We didn’t go through all this to let this bike become a museum piece,” said The Husband to me this morning. “We need to undo this damage, stat.”

That is his way. Reverse course. Get back on track. Because this feels oh-so-familiar, like the spinning wheel of regression. It feels like all the miraculous gains of the the last 3.5 days have vanished.

I know that’s not true. But what we know and what we feel often aren’t the same things, right?

But as we assessed whether our boy was all right (he seems to be), and called the pediatrician to see if they wanted us to bring him in (no, as long as he wasn’t short of breath or in pain or otherwise markedly different), we spent some time talking with our boy. We talked a lot about the bike crash and reminded him how awesome it was riding the bike, and about how sometimes we need to take a chance of falling down in order to experience the truly great things that life has to offer. 

This seems intangible to my boy, this fluffy talk about risk and chances and goals. I’m not getting through on a practical, concrete sense, so we cycled back.

“Let’s make a plan for today,” I said this morning, in preparation for the final day of Bike Camp. “What about when we go outside on the bike, we take things a little slower at first. Not as fast.”

“Maybe start with three laps or something?” he offered.

“That sounds like a great idea, pal. I know you can do that.”

“Yeah.”

Bike Camp isn’t just about learning to ride a bike. Sure, that’s our goal and our kids’ goals and there are very tangible benefits that accompany this: increased independence and self-confidence, better health as a result of increased physical activity, additional opportunities for socialization … just to name a few.

But no matter what, in the small early hours of last night when I started writing this post, I just kept coming back to those very early days – the infertility, the weeks in the NICU, the autism diagnosis, what I refer to as “the black hole years” – and more recently with my long-term unemployment and the uncertainty and the cancer …and I realized that I needed to listen to myself. 

As Frank says, I’ve been many places. Different paths, yes, and maybe not as many exotic ones as you, but many places nonetheless.

And these places have been bumpy and caused us to stumble, to fall.

Hard.

But the only way we can keep our balance is to get back up and keep moving.

One, two, three laps at a time.

Life is like riding a bicycle – in order to keep your balance, you must keep moving.  ~Albert Einstein

You may also like:
he’s got a ticket to ride (bike camp, day 1)
in tandem (bike camp, day 2)

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in tandem

Bike Camp - Day 2

iCan Shine Bike Camp Pittsburgh
photo credit: Melissa Firman

tan·dem [tan-duhm] 

adverb
1. one following or behind the other

Very rarely do I post pictures of my kids here on the blog. When I do, they’re intentionally blurry or taken from behind, so as to protect some vestige of privacy.

But there he is, my boy, in the photo above.

Day 2 of Bike Camp – which was today – is known as “Tandem Tuesday.”

That’s when campers ride an adaptive tandem bike, as Boo did this afternoon along with Peter, one of iCan Shines Bike Technicians.

The way the bike is engineered gives the rider the feeling – and the confidence – of what it’s like to be on two wheels.

Meanwhile, Peter the Bike Technician was evaluating his balance, turning, agility, and braking.

I put down my phone, my Kindle and just … watched.

I thought about the people who we have in tandem in our lives.

Who really have our backs.

Who see past our “I’m fine” to give a damn if we’re doing okay.

Who help us maneuver onto the right path.

Who keep us in balance.

Who pick us up when we fall.

Who are there.

Behind us. Following us. Alongside us.

With us for the ride, no matter what the path holds.

For always.

Bike Camp - Day 2 - Volunteers

Boo on adaptive bike, with volunteers running behind him to keep up.

Bike Camp - Bikes

Bikes, at the start of camp.

You may also like this post:
he’s got a ticket to ride (about Day 1 of Bike Camp)

cycles (days 3 and 4 of Bike Camp)

 

 

 

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he’s got a ticket to ride

I Can Shine Bike Camp

Adaptive bike used by riders at iCan Shine, Inc. bike camp
Monroeville, PA
photo credit: Melissa Firman, July 2013

There was no mistaking my son’s response.

It wasn’t so much what he said, but what he didn’t say.

During his well-visit check up last week, the good doctor (and he is, truly, a good doctor) was talking to him about exercising and trying to eat more fruits and vegetables. At 11 years old, we’re having some challenges on both fronts; as if he’d read my mind, the pediatrician seemed to know the perfect approach to talk to my boy on this issue.

And then, a question. One that he’s probably asked hundreds, thousands of kids.

“Do you ride your bike in the neighborhood, maybe with a friend?”

My boy’s eyes went to the floor. There was no mistaking the look, the loaded weight of that inquiry.

His silence was just a moment, fleeting – accompanied by a quick look to me in the corner where I’d fortunately looked up from my phone to catch his glance.

His blue eyes said it all.

I don’t know how to ride a bike. 

My bike is kinda small. I got it when I was 7. It has training wheels. That’s embarrassing. 

What do you mean, a friend?

“I don’t really do that,” he said to the pediatrician. 

* * *

Once you’ve been through an autism evaluation, you don’t view doctor’s appointments the same way. Ever. At least I don’t. There’s always a feeling of needing to be “on,” of not letting down your guard, of wondering what the hell they are really typing into that computer, of wondering if you are on the same growth curve as all the other parents.

And I know that this shouldn’t matter, but the truth is, it does.

A lot.

Because as our first developmental pediatrician told us, you can’t help but compare kids to each other – and in this case, when you see other kids riding a bike, you can’t help but look at your kid and see another example in which you feel like you screwed up. 

Because we haven’t taught him.

Because we couldn’t.

Because we tried – and then stopped.

Because of The Husband’s herniated disc.

Because it was hot outside.

Because it looked like rain.

Because we’re just not an active, outdoorsy kind of family.

Because he has autism.

Because it was too hard.

Because his anxiety.

Because. Because. Because.

I remembered this post from my friend Alison Piepmeier about her experience with what is now iCan Shine, Inc. (formerly Lose the Training Wheels). I remember thinking how much Boo would benefit from a program like that.

I remembered reading Alison’s post when we were on the cusp of moving to Pittsburgh, and checking to see if our new city had the same program. I remember the feeling of this is going to be okay when I realized that they did. I remembered being at The Children’s Institute (the program host of the iCan Shine Amazing Kids Bike Camp here in Pittsburgh) and mentioning the camp during a job interview I didn’t get.

I remembered my boy’s face in the pediatrician’s office.

This past Friday, I looked to see when the Pittsburgh camp would be taking place, knowing full well we may have missed it. Again.

And there it was. Starting today. Registration ended six weeks ago.

I emailed the camp director anyway.  Long shot … just thought I’d ask … know it’s last minute …

There was one spot left.

* * *

Today was Day 1 of Bike Camp.

My boy was, as is his style when trying something new, kinda nonplussed. Somewhat uninterested, but semi-curious. My baby don’t care ….

iCan Shine relies on volunteers, as each rider is paired with at least one individual who walks or runs alongside him or her to help with spills and direction, give encouragement, catch smiles.

Boo’s volunteers are a family: a mom and her two sons who are helping out for the week.

Within minutes, he was on the bike and taking off around the indoor track.

He’s got this, I thought.

I’m not going to lie. It has been a good but very, very emotionally challenging summer.

We have fallen off so many proverbial bikes and learned how to get back on.

But for today? This one day?

We’re riding so high.

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in tandem (day 2 of iCan Shine Bike Camp)

cycles (day 3 and 4 of iCan Shine Bike Camp)

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It’s a Small World, After All

I’m trying to imagine the conversation, trying to put myself in another person’s glass slippers shoes, so to speak.

I’m thinking the scenario goes something like this:

Two moms, both living with their modern-day Prince Charmings in Manhattan.

Both with children attending the same private school.

Mom A mentions that they’re going to Disney World for spring break and Mom B’s response is the all-too-familiar eye-roll, accompanied by the even more familiar been-there done-that semi-annoyed sigh.

That’s because Mom A and Mom B know what we all know – that even though Disney is supposedly The Most Magical Place on Earth, it can also be akin to The Seventh Ring of Hell (at least in my view) with wait times for rides being as long as 90 minutes, according to a poll of my friends via Facebook.

A disclaimer: I don’t wait 90 minutes for anything. Not a table in an overpriced chain restaurant, and certainly not for a 3 minute amusement park ride, Disney or no Disney. Hence, I needed to do the Facebook poll of friends who have gone to the Magic Kingdom as a family because The Betty and Boo Family has not made a sojourn to Orlando, Land of Required Childhood Vacation Spots. Nor do we plan to in the foreseeable future. 

(I know. My kids are dreadfully deprived.)

But! There’s good news for those who ARE sprinkled with pixie dust. Apparently it’s now possible to arrange for a fairy godmother to wave her magic wand and bibbidi-bobbidi-boo! You now have a pumpkin in the form of a motorized scooter or wheelchair and your long-line ride problem is solved!

According to an article in yesterday’s New York Post, you can hire a disabled “black-market tour guide” (the NY Post’s words, not mine) to pose as a member of your family’s entourage and therefore easily bypass those pesky 90 minute wait times for the rides by taking advantage of Disney’s services for guests with disabilities. (Disney allows each guest who needs a wheelchair or motorized scooter to bring up to six guests with him or her to a more convenient ride entrance.)

This supposedly could have been arranged via a VIP Tour with Dream Tours Florida, a firm reportedly owned by Ryan Clement and his girlfriend Jacie Christiano, and will run you $130 per hour, or $1,030 for an eight hour day. (They are, according to their website, suddenly not offering such tours at this time “[d]ue to inaccurate press and slander.”) This practice was discovered by social anthropologist Dr. Wednesday Martin while doing research for her new book, Primates of Park Avenue. She is also the author of (in keeping with the Disney theme) Stepmonster: A New Look at Why Real Stepmothers Think, Feel, and Act the Way We Do. 

Okay. Deep breaths. As you might imagine, I have a few issues with all of this.

First, let’s play devil’s advocate for a minute. Like all good movies, sometimes what we think we’re seeing isn’t always the whole truth. One reads that all these rich bitches are hiring these tour guides, which then somehow translates into our minds as there must be this underground secret stash somewhere of developmentally disabled people that Dream Tours is exploiting by renting out by the hour.

Which is entirely believable because we have seen such examples of such depravity time and time again, haven’t we? It’s our biggest fear as parents, as people who love someone with a disability, and it’s not impossible for us to go there, to make that leap, because we’ve seen the worst in people. (Hell-lo, Cleveland!)

We know and we fear the happily-never after side of how our kids and the most vulnerable are treated by the Cruella de Villes lurking among us.

But could it also be possible that Mr. Clement and Ms. Christiano, for whatever reasons – call it desperation, call it greed, call it whatever – are in this just for themselves? That they see this as a way for Ms. Christiano (who reportedly has an auto-immune disease and uses a scooter) as a way to make a few extra bucks? Who the hell knows how their business was really doing in this shit-tastic economy? Maybe it’s really just Ms. Christiano who is really the only “black-market tour guide” who is earning $1,030 a day by using her disability to help families get onto the rides faster.

I’d like to believe that. I really would. I’d like to believe that their bungled media response to reporters’ questions is simply a result of scared naivete, of poor crisis communications management. (And if that’s the case, I hope they get in touch if they need a PR strategist. I happen to be available.)

That still doesn’t make it right.

Because there are still a lot more things incredibly wrong and rightfully outrageous about this.

In my view, this story shows that we truly do live in a small, small world when it comes to employment and people with disabilities.

It’s a small, small world where only 20.7% of the labor force is made up of people with disabilities. (Source: United States Department of Labor Office of Disability Employment Policy)

It’s a small, small world when the unemployment rate for people with disabilities is at 12.9%, compared to 6.9% for people without. (Source: United States Department of Labor Office of Disability Employment Policy)

And it will continue to be a small, small world with the current dismal economy and the state of human services for the number of people with disabilities who need gainful, meaningful employment as well as those who will need jobs in the future.

We’re living in a fairy tale, going ’round and ’round on the same ride.

The only way this story has a chance of a happy ending is if changes are made. Because people with special needs deserve the same employment opportunities as all of us. Because if indeed there was a practice of employing and hiring people with disabilities for the purpose of skirting the system, then the outrage most certainly belongs with those who perpetrated such morally despicable acts.

And it certainly belongs on a mindset that sees people with disabilities mere playthings for the rich, as objects and goods to be bought and sold on the “black market.”

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copyright 2013, Melissa, The Betty and Boo Chronicles. If you are reading this on a blog or website other than The Betty and Boo Chronicles or via a feedreader, this content has been stolen and used without permission.

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Book Review: Bloom: Finding Beauty in the Unexpected, a memoir by Kelle Hampton

Bloom: Finding Beauty in the Unexpected
by Kelle Hampton 
William Morrow, an imprint of Harper Collins Publishers
2013 (paperback) 
304 pages 

When Kelle Hampton became pregnant with her second child, she expected life to be perfect. After all, it already was: she had a beautiful little girl, a wonderful husband, a thriving photography career, and a close-knit group of friends. There was no reason to believe that all this wouldn’t continue, blissfully ever after.

But as soon as baby Nella was placed in her arms, Kelle knew something was wrong.

“I knew the minute I saw her that she had Down syndrome and nobody else knew. I held her and cried. Cried and panned the room to meet eyes with anyone who would tell me she didn’t have it. I held her and looked at her like she wasn’t my baby and tried to take it in. And all I can remember of these moments is her face. I will never forget my daughter in my arms, opening her eyes over and over … she locked eyes with mine and stared … bore holes into my soul. 

Love me. Love me. I’m not what you expected, but oh, please love me.” (pg. 6) 

Bloom is Kelle Hampton’s memoir of her incredibly emotional first hours, days, and months as Nella’s mother. Instead of basking in the joy of having a perfect-in-her-own-way newborn, Kelle found herself in a very dark, very frightening place where she struggled to accept this child who was different than she had expected.

(Accept may not be the exact word. As Kelle writes, “I don’t think acceptance is just a course you can check off when you’re finished, never to return to it again. You continually arrive at a greater place of understanding through each challenge, experiencing many moments when you feel broken along the way: This is hard. I don’t know how to do this. I need help. I’m not strong enough for this. I’ve had those moments outside of Down syndrome, and I fully expect there will be more in the coming years, both with Nella’s challenges and with life struggles in general. Because of those moments, I understand that the brokenness and confusion and inner disarray are all gifts, allowing you to discover yourself and grasp your connection to the world. When you feel you’ve arrived at your lowest point, think again. It’s really just the starting line for your highest point – the greatest understanding, the most strength, the deepest confidence.” pg. 281)

Make no mistake, Bloom is not always such a feel-good, introspective, motivational book. There’s a lot here that is emotionally difficult to read. Kelle owns her struggle, fully and completely, and she gives it to her readers in every heartwrenching detail, even when it would be easier to edit out the parts that others would keep private.

“A week before she was born, I had used a gift certificate my friends had pooled together to buy an over-the-top pink silk baby book that I paid extra to have “Nella Cordelia” elegantly embroidered across the top. And, I am sorry to say, I had a moment of disappointment after my sweet girl entered the world in which I actually thought, I guess I can’t use that baby book anymore. I am ashamed to admit that, for a moment, I felt I had used up a beautiful name on a baby I hadn’t intended to be the recipient or that I suddenly didn’t want to send out a birth announcement when weeks earlier I obsessed over a flat or folded card. This saddens me now. But it was in this beautiful mess of my former self that true potential dwelled – potential to be molded and shaped by a grand defining moment. And where there is potential … there is greatness.” (pg. 140) 

Wow.

I felt I had used up a beautiful name on a baby I hadn’t intended to be the recipient ….

Honesty doesn’t get more real than that, folks.

Kelle has been criticized on her blog and in some reviews of her book about her lifestyle and her reactions (such as those mentioned above) after Nella was born. All I have to say about that is this: We can be an incredibly judgmental society and we mothers are often hardest on each other. I have no interest in responding with nothing less than compassion. Even among those of us who are parents of children with special needs, our experiences are never, ever identical. (Kind of like, well, parents of any children, really.) Our journeys and our growth are uniquely our own. As we in the autism community are fond of saying, if you’ve met one child with autism (or Asperger’s), then you’ve met one child with autism (or Asperger’s).

I think that extends to us as parents, too. Over the course of Nella’s first year of life, Kelle goes through a range of emotions – from the initial overwhelming sadness to adjusting to their new life to the beginning stages of healing. Sometimes from the vantage point of time it is easier to forget just how painful and sad and scary those days and hours were – or are.

“Healing is a bit like watching a flower bloom. You don’t really know when it’s going to happen, and despite the fact that you might be sitting there in front of barren ground attempting to will a bare stem to blossom, it doesn’t happen on command. No, it is gradual. Like time-lapse photography. And as you are sitting, waiting, pleading for growth, you eventually begin to forget that you are waiting until suddenly, days later, you look and behold … a bloom.” (pg. 57)

As part of her healing, Kelle begins to share her story and photographs through her blog, Enjoying the Small Things, and finally, to embrace the wider Down syndrome community not just as Nella’s, but as her own and her entire extended family, by growing and doing things she never imagined.

“Confidence doesn’t always come in surges. Sometimes – lots of times – it brews unbeknownst to us, building during the time we feel the least confident – through the tears, the questioning, the self-doubt, the begging God to make it better. Confidence, like contentment, is earned, paved stone by stone until you finally turn back and realize it has all been pieced together to create something strong. Confidence is a process.” (pg. 171)  

Just as there are difficult parts in Bloom, watching Kelle’s journey unfold is also breathtakingly beautiful – made so by her words, yes, but especially so through the gorgeous photographs she includes. (As much as I love my Kindle, this is definitely a book to be read in print for the pictures.) They add a bit to the perfection mystique, sure, but they’re important for several other reasons. They illustrate – more than words can ever say – the message that Nella is someone to be proud of, not hidden … and above all else, a beautiful little girl who is without a single doubt absolutely, completely 100% perfect.

Thank you to TLC Book Tours for providing me a copy of Bloom: Finding Beauty in the Unexpected in exchange for my honest review. I was not compensated in any way.

See what other bloggers on the book tour thought of Bloom: 

Tuesday, April 2nd: Book Club Classics!
Wednesday, April 3rd: Tina’s Book Reviews
Thursday, April 4th: Lavish Bookshelf
Monday, April 8th: 5 Minutes for Mom
Tuesday, April 9th: Good Girl Gone Redneck
Wednesday, April 10th: From L.A. to LA
Thursday, April 11th: A Patchwork of Books
Monday, April 15th: The Well-Read Wife
Tuesday, April 16th: Mrs. Q: Book Addict
Wednesday, April 17th: The Betty and Boo Chronicles
Friday, April 19th: Momma Jorje
Saturday, April 20th: Words of His Heart
Saturday, April 20th: Simeon’s Trail
Sunday, April 21st: Unringing the bell
Monday, April 22nd: Kritters Ramblings
Tuesday, April 23rd: Bloggin’ ‘Bout Books
Thursday, April 25th: Suko’s Notebook

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copyright 2013, Melissa, The Betty and Boo Chronicles If you are reading this on a blog or website other than The Betty and Boo Chronicles or via a feedreader, this content has been stolen and used without permission.

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