The Parent's Guide to Down Syndrome (Review and Giveaway)

Disclaimer: I received a free PDF copy of the book in exchange for my honest review.

If you have received a prenatal Down syndrome diagnosis, or are a new parent to a baby with Down syndrome, there is a just-released book written just for you. (The book is also worthwhile for any parent of a child with Down syndrome to peruse as it contains information through the adult years.)

The Parent's Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis Through Adulthood is co-authored by Jen Jacob (author, co-founder and VP of Down Syndrome Diagnosis Network) and Mardra Sikora (author, speaker, motivator, and advocate).

This comprehensive, up-to-date, organized and easy-to-read guide is full of information, resources (including links to all websites), and support. It is easy to navigate the different stages you, and your child with Down syndrome, will find yourselves. The book is short (under 300 pages) so it is easily 'digestible' while still providing a lot of valuable information.

- Part One covers "The Basics" of what Down syndrome is, receiving a prenatal diagnosis, and receiving a postnatal diagnosis at birth

- Part Two covers "The Journey" with chapters focused on newborn, baby/toddler years, primary/middle school, teenage years, and adult years

- Part Three lets parents know "You Are Not Alone" and covers support and research and a world-wide network connecting families who have a loved one with Down syndrome

Throughout the book there are plenty of quotes and stories and experiences from numerous parents on this journey, but more importantly there are the voices of those who have Down syndrome giving their perspective on their lives and advice to parents.

Mardra put together some great information on the making of this book and things to keep in mind, such as this: "we worked hard to educate the publishers about people first language and its importance – there are a few missteps within the pages. These editors worked hard to quickly tackle a subject new to them while helping us get a lotof information shared in short order. The effort resulted in overall helpful materials for parents (and others) with a few slipups that I ask be forgiven, like any other proofreading error, and will be adjusted on future print editions, and hopefully sooner on Kindle formats."

You can also find more information on this book at this link.

I've been on my own parenting journey for 12 years now so a lot of the information/resources etc aren't new to me (which is fine as it's most beneficial for new parents), but I would have appreciated having this book after Kayla was born. While the information that comes with a diagnosis can be, and is, overwhelming, this book makes it easy to skim through and pick out what is relevant to what you need at that time of your life.

And our journey isn't over, by far. We will be entering the teen years and that, of course, will quickly be followed by the adult years. I enjoyed reading those chapters as they give me a glimpse into what to expect with my own child.

Don't just take my word for the great resource that is this book; you can read what other bloggers are saying about the book, too.

For the giveaway. There is a Grand Prize giveaway, and then there is a single book giveaway (this one is just from my blog.)

To enter to win the book from my blog just leave a comment (making sure I can reach you) saying what your current go-to resource is for Down syndrome (if you have one). I will pick a winner via random.org in a week.

To enter the Grand Prize which includes the book (of course), other book resources, a totebag, stickers, and a free registration for this year's 321eConference (all valued at over $200) just enter the simple and quick Rafflecopter:

a Rafflecopter giveaway

You can get connected with the Parent's Guide to Down Syndrome Facebook page as well!

   

P is for Puberty

Puberty. Yes, puberty. Isn't that a topic every parent looks forward to with great anticipation?

Ha! Great anxiety is more like it!

Kids with Down syndrome may be delayed with a lot of milestones - sitting up, walking, talking etc, but puberty is not one of them. They still go through puberty in the same age range that their typical peers go through puberty.

I'm not going to blog about Kayla and puberty, because, privacy. Hello, I wouldn't have wanted my parents talking to anyone about my experience going through puberty. She is 12 though, so suffice it to say that, yeah, puberty is alive and well in our house with those overflowing emotions and hormones that take over a young person's body and mind.

I did want to share a couple of books that can be helpful to parents and kids with Down syndrome, or disabilities in general, to discuss puberty and growing up and all that goes along with it.

Terri Couwenhoven is the author of The Girls' Guide to Growing Up: Choices and Changes in the Tween Years. She is a certified sexuality educator who specializes in working with individuals with intellectual disabilities. She also has a daughter who has Down syndrome. I attended one of her workshops a couple of years ago at the National Down Syndrome Congress Convention.

She also wrote a book for the other gender as well: The Boys' Guide to Growing Up: Choices and Changes During Puberty.

The books are very simple and easy to read. They are short enough to not lose interest and aren't filled with a lot of extra information to sort through and comprehend. The books are written on a third-grade reading level with straight-to-the-point facts and realistic illustrations.

The first time I tried to read the book with Kayla she wasn't very interested and didn't want to talk about any of it. I didn't force the issue, but I did leave the book out in my room where she could see it. It wasn't long before she was picking the book up herself, looking through it, showing me pictures and discussing with me what the book was about. I think it really helped to open the door of communication and give her some understanding as to what was happening and what was going to happen.

If I can give any advice it would be to talk with your child about puberty before they are actually going through puberty. Begin the dialogue so they know what to expect and what changes will be happening to their body. Talk about it in a nonchalant manner and let them know that everyone goes through this and it is just a natural part of growing up...even though we wish we could keep them little for just a while longer.
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Black Day: The Monster Rock Band (Review & Giveaway)

Kicking off the start of Down Syndrome Awareness Month with a book review and giveaway.

The book itself has nothing at all to do with Down syndrome. But I'm leading off "31 for (T)21" (psss...it's not to late to join in!) with this particular book review and giveaway because, well, you'll see at the end of this post!

Black Day: The Monster Rock Band is a hard-cover, colored-illustrated, children's book. The story is about a young paperboy who discovers a rock band while he's delivering papers. He wants to join their rock band but there is one problem - the band is comprised of monsters (Frankenstein! Dracula!) and they tell him he can't join because he's a human.

That doesn't stop the paperboy from following his dreams; so with determination he finishes his route and goes back to attempt to join their band again.

I left the book on our kitchen table and my 7 year old son started reading it without any prompting from me, or me telling him where it came from, or that it was for a review. After he finished reading it, and before I could ask him what he thought about it, he closed the book and with a smile said "I really like that book!"

I asked him what he liked about it and he said, "Well, just everything!" He said he liked the monsters and the paperboy and at the end he tried to figure out who some of the people in the crowd were. I noticed that he really seemed to like the illustrations and looked at the details on each page.

Even though there are monsters in the book it isn't a scary story at all. In the end it's subtly about differences and acceptance. In this case the boy is different from the monsters, but he doesn't see that as a reason to not join their band.

So why am I showcasing this children's book, that has nothing to do with Down syndrome, for 31 for (T)21? Because of the author, that's why.

The author is Marcus Sikora and he is a young man with Down syndrome who wrote this book (the idea, dialogue, plot twists) along with some help of fine-tuning from his mom, author Mardra Sikora.

Marcus has a natural talent as a storyteller and has always been interested in stories, but leaning towards plays/musicals (he's had a one-act produced by a high school). Marcus and his mom write every weekend and one day he started talking about a monster rock band called Black Day. His father suggested they write a children's book and that is when the story became more defined.

Mardra and Marcus have been doing book readings across the country (see events here) and they are going to be in my neck of the woods in a couple of weeks!

I'm so excited to take my kids to Wonder Works Toy Store in Charleston on Saturday, Oct 10 from 2-4pm (they'll also be at the location in Mt Pleasant earlier that day; if you're in Greenville they'll be there too!). I think this will be a neat experience for them to meet Marcus so they can connect him as the author of a book they've read and like (Kayla said she doesn't like the monsters, because monsters, but she likes the story). If you are in the Charleston area come out and meet the author for a book reading - he'll sign a book for you too! (If you're not able to make it to the event Wonder Works will carry Black Day: The Monster Rock Band after Oct 10).

Enter to win your own copy of the book here by leaving a comment stating who you would like to win this book for (contest closes on Oct 15 so it can arrive before Halloween).

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Treasure Hunt Book Review and Giveaway

I recently read and reviewed a book with my kids by Lady Jenniviere called Treasure Hunt. I received this book for free, opinions are mine and my children's.

Treasure Hunt is book four of six in the Lady Jenniviere's Quill Series. We haven't read the previous books but had no problems reading this book without reading the previous books; I think they are independent of each other and you won't miss out on information by not reading them in order.

Lady Jenniviere's books are geared toward the preteen/middle school age group Each of her books contain important messages that she wants kids to know such as "...life isn't always wrapped up in a neatly packaged happy ending." Her books encourage readers to use their imagination and she wants her books to show that "Life isn't always black and white...books illustrate the beauty of the gray parts."

Treasure Hunt is about a boy, Chase, who is looking forward to summer vacation on Sanibel Island; where he goes every summer to visit his grandparents. This summer he is especially excited about because he found an old book about the island that has a map of treasure buried long ago by pirates. He is determined to figure out the map and find this long-lost buried treasure and claim the riches.

Along this journey he encounters unexpected creatures who become his friends: a seagull, dolphin, alligator, turtles, and a mermaid. The imagination used to bring these friends to life really interested my kids, especially my 7-year old.

Chase learns several lessons throughout the book as they travel the island looking for the treasure, and in the end he finds something more valuable than jewels or gold.

I found this to story to be a light-hearted, adventurous, wholesome family book interspersed with life lessons. It was a refreshing read and I anticipate reading the other books in the series with my kids, too. Lucas said he really liked the book and characters, Kayla gave it a thumbs-up.

I have 3 copies of this e-book to giveaway. The winners will receive a code that they can use to get the book for free from Smashwords which can be downloaded to an e-reader.

Please leave a comment, making sure I can contact you, for a chance to win a copy. Winners will be chosen by Random.org.

Katie Woo's Super Stylish Contest (and Book Bundle Giveaway!)

A few months ago I was at the library stocking up on some audio books and regular books for the kids. One of the books I grabbed off the shelf for Kayla was Fly High, Katie (Katie Woo). She really liked the book and read it several times. She even studied the back cover long enough to realize there were other Katie Woo books as she came to me saying, "Mom, I want this Katie Woo, and this one, and this one." She was interested enough to want to read the other books about Katie. I found another book at the library that we brought along on our recent trip to MD.

Just a couple of weeks ago I found out about a contest to design Katie Woo's next outfit.  Just download the black and white drawing, create an outfit using crayons, markers, colored pencils etc, and submit your design. Entries need to be submitted by Nov 17.

The author, Fran Manushkin, and illustrator, Tammie Lyon, will pick the best shirt, pants/skirt, shoes, and accessories and those winners' (up to 4) designs will be featured in an upcoming Katie Woo book. Each winner will also receive a Katie Woo Book Club Kit.


Unfortunately for Kayla the entrants must be in Kindergarten-3rd grade, but maybe you, dear reader, have a child in that grade range who would like to participate.

If you have a child interested in submitting their own designs just let me know in the comments below (and are they familiar with the Katie Woo series?) and FOUR winners will be selected (using Random.org) to receive a set of FIVE books! The 5 books are all about art and drawing to coincide with the design an outfit contest. Contest will close next week. 

The books in this giveaway are:
Katie Woo's Super Stylish Activity Book
Easy To Draw Animals  
A Halloween Drawing Spooktacular
A Thanksgiving Drawing Feast
Beginner's Guide to Drawing

And not to be left out, Kayla is also fortunate to receive a set of Katie Woo books to review, but I'm pretty sure I already know what her review will be - she'll like them!

Thanks to Capstone Young Readers for providing the books for the giveaway!

Just Like Other Daughters

A few weeks ago I came across a deal for a book available on Kindle called Just Like Other Daughters.

I was intrigued by the storyline - a single mother living with her adult daughter who has Down syndrome and coming to the realization that her daughter has fallen in love with an intellectually disabled man and insists that she is going to marry him. Whew!

There aren't many fictional books that have a main character and storyline involving someone with Down syndrome. I was curious to how the author would tackle this subject; how she would portray a parent dealing with her adult child wanting to get married, but not wanting to let go because she (the mother) has been the only constant in her daughter's life. I wondered how she would tackle the subject of marriage between adults with disabilities. The mother was very against it and didn't think this couple could manage married life and all the questions that went along with it - namely where would they live? What about birth control?

From what I could tell, the author, Colleen Faulkner, is not a parent of a child with Down syndrome. I don't know if she knows someone with Down syndrome, if she has a friend raising a child with Down syndrome, or what her experiences have been to base her characters and storyline from.

I was disappointed in several parts of the book. She did not use People First Language (PFL). PFL is putting the person before the disability. I.E. Kayla is not a "Down syndrome/Down's child" she is a child who has Down syndrome. While I wouldn't necessarily expect the author to know this, and there are many people who have a child with Down syndrome who refer to their children as "my Down's son", it's a personal preference for me to not refer to Kayla in that way. She is Kayla. The Down syndrome does not have to come before her name. So it was ... irritating ... to read several times "Down syndrome girl, Down syndrome people" throughout the book.

In the first chapter the mother describes her daughter's epicanthal folds as "Mongolian eye folds." Using the term Mongolian for people with Down syndrome is so, so, so out-of-date and more importantly not a factual term.

The daughter is 25 but is continuously portrayed as always child-like. While I realize people with intellectual disabilities can have a vast range of abilities and some people are described as having a cognitive level of a child, I think this stereotype can be dangerous to portray. It lends to society continuing to treat people with intellectual disabilities as less-than, and treated younger than they are. It also presents this image that they never grow up and are one-dimensional: child-like; and have no other qualities or characteristics about them. I was saddened to see this author follow that line of thinking. The daughter could very well need a lot of help with her living skills, but she is still a 25 year old woman ... she could have more interests besides Disney movies all the time. There are parts of the book written as the thoughts in the daughter's head and she uses phrases like "meanie head/dummy head."

She does use the word 'retarded' a couple of times, but it makes the mother uncomfortable when the thought comes to her head and it is used as a medical descriptor, "...my daughter and this mentally retarded man break suction. There's that word again. This time I'm too upset...to be disturbed by my mental word choice again."

Then there was this snippet, "Of course Randall and I had never even contemplated having another child after Chloe. Randall and I were responsible parents. We would have never dared taken our chances in conceiving another child."

Had the author even talked to parents of kids with Down syndrome? I've always wondered what the statistics would show for parents who have another child after their child with Down syndrome. Having a child with Down syndrome is not the worst thing in the world; it does not make you think you can't have another child!

Despite all that I kept reminding myself this was a fictional book. There were some parts I could identify with. Sometimes I feel I am too over-protective of Kayla and do too much for her. I need to push her more, teach her more, let her be more independent.

The last few chapters of the book drew me in more than I expected. I will not spoil the ending, but I will say it became a page turner and the ending was not what I was expecting at all.

Overall it wasn't a bad read, I just had to get over the cringe-worthy parts, the roll-my-eyes at the stereotype parts, and read it for the fictional book it is.

I think she portrayed the mother's struggles with coming to terms that her daughter is actually an adult and has adult feelings fairly well.

 

Kids Book Leads to R-Word Discussion

I knew I would eventually have 'the talk' with my kids about the R-Word. (For those not in the know, "r-word" refers to the word(s) retard(ed)). I just wasn't expecting for it to happen now (with Lucas only being 6); and I didn't expect the conversation to be spurred on by a kid's book.

Ever since I discovered my children enjoy listening to audio books, and since Kayla was going to vision therapy two times a week after school (30 min each way), I have been checking out audio books for us to listen to on those drives. 

A few weeks ago I checked out The Candy Shop War by Brandon Mull. I hadn't heard of the book or author before, but thought the description on the back sounded interesting enough to keep my kids' attention.

The first chapter had me muttering "What the heck kind of book is this? What did I check out?" It did not start off in any way that I was expecting. The first chapter was basically a description of what sounded like a hit man and his tools of the trade.

We continued to listen to the book as the second chapter introduced the kids who are the main characters. Throughout the next several chapters I again found myself wondering what kind of book this was - i.e. 3 of the main characters (5th graders) have a 'club' that the 4th character wants to join. When he asks what they do in this club they basically explain breaking and entering into buildings. When he remarks, "You steal stuff?" the girl explains that of course they don't steal stuff, they just like to explore places they shouldn't be. Or something like that. I don't remember the dialogue exactly, but that was the premise and I remember being disappointed that these were the main characters.

So along with the main characters there is another small group, I think 3 kids, who are the bullies.

We were in the parking lot getting ready to go home, after a great time at the Buddy Walk no less, and I was half-listening to what was going on in the story when all of a sudden I heard this dialogue from one of the bullies to one of the other kids:

"Actually," Denny said innocently, "I came over because I need a favor. See, I'm supposed to do an oral report about retarded kids, so I was wondering if I could follow you around for a few hours. Do a little firsthand research."

This was very obviously meant as a derogatory, mean, spiteful, put-down. This was obviously using the word to make fun of someone. It also wasn't necessary. The author already established that this group of kids were mean and bullied other kids by previous encounters and conversations in the book. As I always do when I come across someone using this word in a book or movie I think, "You're a writer. You have so many other words you could've used in place of this one. Doesn't your vocabulary expand beyond this?"

I reacted right away and immediately ejected the disc from the player. I told the kids I was sorry but we just weren't going to be able to listen to the rest of the story. I was a bit flustered and unprepared and probably overreacted, but I was caught off guard. I wasn't expecting to hear that word used in that way in a children's book.

After a minute we continued to sit in the parking lot and I decided to talk to my kids about what happened and why I was upset about the book. They had no idea what happened. The word and the context went right over their heads. It wasn't a word they had heard before, but it didn't make them stop and ask me about it either.

I didn't know where to start and I'm not sure I did a very good job of explaining to my kids, but I tried. I repeated back what the character said, the context he used it in, and the intent behind using it. Lucas asked me, "What does retarded mean?"

How do I explain that to my innocent kids looking back at me from their seats? How do I explain how degrading and hurtful that word has become to describe people like his sister? How do I explain it to Kayla?

On a very basic level I said that all the word means is to make slow. It was used by doctors to describe people who have an intellectual disability and having an intellectual disability just means that it takes you more time to learn. But over the years people have taken that word and used it as a slur against other people; they have turned it in to a bad, ugly word and now it is used to make fun of people.

I told them I feel strongly about the use of that word and choose not to listen to music, books, movies etc that use that word and I couldn't, in good conscious, continue to let them listen to that book. For one thing I had no idea if it would be used again throughout the book.

I'm not sure how much they understood, and I'm not sure I reacted the right way, but I hope this can be the beginning of open dialogues with my kids and they know that we can discuss serious topics and talk about why we don't use certain words, or behave a certain way.

When we got back home I looked the book up online to see if maybe this was intended for a higher age group (although I still wouldn't have condoned its usage), but it's not. It says ages 8 and up. And it was only published in 2009, so it's not like it is an older book either.

Needless to say I was extremely disappointed in this author's decision to use the word retarded in his children's book - and to use it disparagingly.

 

Guest Post - Don't Let It Get You Down Syndrome

Dad, and author, Steve Dinning has written a book about his son who has Down syndrome and autism - Don't Let It Get You Down Syndrome. This books differs from other memoirs in that it deals with that dual diagnosis (I'm not aware of another memoir that deals with both diagnosis).

While I have not finished the book yet I am quite enjoying Steve's story telling as he is sharing his story and experiences through humor. When you're a parent sometimes all you can do is laugh and find the humor in the things your children do.

I asked Steve if he would write a guest post for my blog for 31 for 21. Here is what he wants you to know about his book:
 

"I am the dad of a 14 year old boy called Jamie, who has both Down Syndrome and Autistic Spectrum Disorder.  He is in next room to me right now as I type this guest blog post.  He is supposed to be going to sleep but I can hear him banging on the radiator with a Buzz Lightyear doll.  I suspect the neighbors can hear him too.  

I love blogs like Big Blueberry Eyes, where you can see that the authors love their children, and are so happy to have them. I am sure they serve a good purpose helping young parents come to terms with Down Syndrome.  I am fairly new to blogging; I have always loved to write, but at the time when Jamie was born, blogging was, like Jamie, in its infancy.  The idea of blogging about being Jamie’s dad did not really occur to me, and the whole thing rather passed me by.  I have always felt though that I have a story to tell, and so I have written a book - Don't Let It Get You Down Syndrome.  (Now on sale in paperback)

It is a comic memoir, not a misery memoir.

Jamie is not a typical child with Down Syndrome.  Perhaps it is because of his additional autism, or perhaps it is because of terrible parenting decisions we made in the early years, but his behavior has always been extreme, infuriating, exhausting, and hilarious. By the way, I am kidding when I blame it on the parenting decisions - it is definitely the autism.

For years now, whenever I have told my friends and work colleagues about Jamie’s latest misdemeanor, they always laughed.  And there are only so many times that you can hear people say “You should write a book about Jamie” before you eventually yell at them “All right! If I promise to do it will you stop going on about it?”

Highlights of Jamie's first decade or so are covered by my book, and include anecdotes that I like to refer to as:

• The Body In The Library
• The Prisoner
• Crack Problem
• Down By Law
• Vintage Pornography
• Heere's Jamie

Okay I have just read those back and I have to admit, the anecdote titles are not at all funny.  They make it sound like the book is a horror story, or at the very least, a crime story.  Well it isn't.  (Perhaps it is a little, but mainly not).  It's an upbeat comedy with a central character you will never forget.  Is it too late for me to work on those anecdote titles?

I am sure that seeing the funny side of the situation was probably a good coping mechanism for me.  More than anything though, I just did not want to write a misery memoir.  I could so easily have done it – I could have changed the tone of the book and focused on all the bad things that have happened – but I chose not to.  Only time will tell whether or not that was a sound financial decision; misery memoirs do seem to sell very well indeed, and if I only sell half a dozen copies of my book I will know that I made the wrong call in terms of appealing to a mass market.  However, it would not have been right for me.  I have really enjoyed writing Don't Let It Get You Down Syndrome, and I hope you will validate my decision to go for a comedy by checking it out.

From now on, whenever Jamie does something unspeakably naughty, I will be able to tell myself “Look on the bright side.  This will be an excellent anecdote for the sequel.”

Life With A Superhero (Book Review)

When Kayla was born there weren't very many books on a parent's experience raising a child with Down syndrome. There were a few, but (if memory serves me right) they were older books.

In the eleven years since Kayla was born there have been a whole slew of new books/memoirs written on this subject. Most of the memoirs follow the same type of story line and revolve around the children still being very young in age. I'm always interested in the next book on this topic as I enjoy reading about another family's life experience.

The newest/latest book I've had the opportunity to read is unlike previous books (that I'm aware of) in a couple of ways: The book, Life With a Superhero Raising Michael Who Has Down Syndrome, is about the adoption of Michael as an infant from another country, and the story follows Michael into adulthood.

The title Life With a Superhero is not about Michael being a superhero, or having above-human qualities, or being angelic, but the title comes from Michael's love of all things superhero. 

Since the author, Kathryn Hulings, adopted Michael this memoir doesn't take on the same tone or storyline of other memoirs with receiving a surprise diagnosis, grappling with the meaning of the diagnosis, and finally coming to acceptance of the diagnosis.

While I don't know Kathryn Hulings, and have never met her, her writing has a feeling of raw emotions and sharing the good, the bad, the ugly. Reading her story felt authentic, as if she didn't hold back. She talks about her parenting style and sharing parenting moments that she regrets and admits there was  never a good excuse for some of those moments. Reading that made her seem like a real person with flaws and that she never tried to present her life, or the journey of raising Michael, in a false, too-positive light.

The book doesn't try to paint and overly positive picture of raising a child with Down syndrome. She shares the triumphs (being a member of their local community's swim team), to the challenges (Michael's running, finding a preschool that wouldn't balk at accepting him to their program, and independence). 

I especially enjoyed the last several chapters of Michael's transition out of high school into adulthood. She shares about the love of Michael's life - Casey - and their intense desire to get married. It was interesting to read and Michael and Casey's parents have, and are, navigating their relationship and helping them to be as independent as possible.

This one paragraph sticks out for me. After explaining about all the ways Michael is included and thriving in high school, Mrs Hulings eloquently states,

"Not once before the moment have I mentioned Michael's capabilities as measured by tests and percentages and standards used for old-school special education placements." She goes on to say that academically he is on a second-grade level, emotionally like a 10-12 yr old, and socially shares interests and obsessions of any typical young man. She continues, "If an archaic placement system, that did not encompass the ideas of inclusion had been implemented, and educational services were based on his 'stats," Michael would have spent junior high and high school imprisoned in a contained, exclusive classroom, combing his hair and pouring juice."

Just as when I read the book, Who's The Slow Learner, I want to shed a few tears over the thinking that things that happened 'back then' are still happening now. Mrs Hulings mentions "old-school special education placements" and "an archaic placement system" - yet that is still what we are dealing with here. Kayla's first placement was predetermined and solely based on how she measured up on tests and percentages. It might be old-school and archaic, but it is still happening and I can only question why. But I digress.

I appreciate the chance to get a peek into Michael's life as he is still growing and learning in to adulthood. This was a refreshing book to read.

Zippy's Club Book Review

Zippy's Club is the latest children's book in the Zippy series.  Zippy is a zebra who was born without any stripes and the first two books address the topic of Zippy coming to accept himself for who he is and the process it teaches others to celebrate differences.

The author, Candida Sullivan, is no stranger to growing up with a difference as she was born with a rare condition called Amniotic Band Syndrome.

Candida also experienced bullying and drew upon her experiences to create a children's book to address the topic of bullying: Zippy's Club.

Zippy wants to form a club to combat the issue of bullying. He tells the potential members that they have 'chores' to do in his club - namely being kind, treating others as you would be treated, and celebrating differences. The other animals don't like the idea of having to do 'chores' and decide they don't want to be in this club.

Zippy encounters the lizard, who is being bullied by the snakes, and decides to go talk to the snakes. The snakes then bully Zippy to the point where something tragic almost happens. The animals then all realize the importance of Zippy's message and the purpose of his club.

It is a great book for younger children to open the discussion of bullying. The end of the book also has a section from a nationally certified counselor to help initiate those conversations. It has questions like, "In the story who was the bully, who was being bullied, and who just stood by?" It is great to get kids realizing what it means to be a bully, to be bullied, and to stand by and watch it happen.

My kids gave the book 2 thumbs up!

Disclaimer: I received a copy of the book for free to facilitate my review. All opinions are mine, and my children's!

Who's The Slow Learner? A Chronicle of Inclusion and Exclusion

Sandra Assimotos McElwee describes in detail her son's experience with a trailblazing inclusive elementary educational experience through the opposite of a more restrictive, and unwelcoming, middle and high school experience in her book Who's The Slow Learner? A Chronicle of Inclusion and Exclusion.

Sandra's son Sean has Down syndrome, but this is not another memoir about raising a child with Down syndrome and life lessons learned from that experience (which is one of the reasons I was so eager to read this book). Rather her book is about the whole school experience for Sean and her advocacy in helping his elementary school become a role-model on inclusive education for other schools. This book is the first book to chronicle a student with special educational needs from preschool through high school.

Who Is The Slow Learner is not meant to be a how-to book for other parents, but instead it is one family's journey on what worked and what didn't work in the world of special education. It is one student's experience with being fully included in his elementary years to much harder experiences in middle and high school - and not hard because of the students - they were accepting of Sean as they had been with him since elementary school - but harder because of the mentality of the administration and teachers that they could not find a way, nor wanted to make the effort, to make an inclusive placement successful for Sean.

Sandra gives detailed examples of what she did for each school year in trying to prepare the staff and teachers to have Sean in their class and what needed to be done in terms of accommodations, modifications, and positive behavior plans in order to make it a successful school year. Each grade is covered in a chapter and his IEP goals are also listed for each grade. The goals, which are individualized to what Sean was working on, again are not meant as a how-to guide, but rather to show the goals that he was working on and show that he was not on grade-level with his peers, but was still able to be included while working on his own goals as well. He made progress and learned the general education curriculum alongside his peers. Inclusion throughout elementary school was beneficial to Sean by what he learned, by having his peers accept him, and had a positive impact on the other students by utilizing peer-models and peer-tutoring. 

Sean graduated from high school in 2011 . As I read Sandra's experience with school I felt like I was reading some of my own experiences with advocating for inclusion for Kayla. I can't believe that parents are still having some of the same issues with inclusion as she did in the 1990s. The more things change the more they stay the same?

She mentions that almost 20 years ago ... "Back in the day, the old labels included Trainable Mentally Retarded and Educable Mentally Retarded." How unfortunate that these labels did not stay 'back in the day.' While these may not be the labels they are giving to children, or the labels put on their IEP, some places, incredulously, still use those terms. Four years ago when we moved to SC I was talking to someone from the school district and she was talking about the "EMD, TMD, and PMD" classrooms. I had to stop her and ask what those acronyms meant as I hadn't heard them before. She told me they meant the "Educable Mentally Delayed, Trainable Mentally Delayed, and Profound Mentally Delayed." I was floored that they actually referred to their self-contained classrooms with such labels.

Reading through this book I felt as if I was sitting with Sandra having lunch and discussing school experiences. She writes as if she is talking to an old friend. I found myself wanting to say, "Ok so what happened next? Tell me what you did in that situation?" And my questions would be answered in the next chapter.

I'm grateful for Sandra sharing her experiences as I've not come across a book so detailed about the special education process from a parent's perspective ... I just wish we weren't still having the same battles years later!

Hugo The Happy Starfish (Children's EBook Review)

Disclosure: I got this product as part of an advertorial.

I was familiar with the starfish character Hugo as I already had one of the books on my Kindle. This was an opportunity to find out more about Hugo and the other books in this series.

One Step A Time - Hugo The Happy Starfish is a great book to teach young children about perseverance, never giving up, and encouragement from others to help you reach your dreams. Hugo lives in the ocean (obviously!) and one day finds a candy wrapper that has a picture of the Matterhorn Mountain in Switzerland on it. He thinks it is a most beautiful mountain and wants to visit to see what the world would look like from up there.

Along the way he encounters a few obstacles that make him want to go back to the ocean, but he remembers the words for the Mantra to never give up. Once he finally makes it to the mountain he is daunted by how big it is and doesn't want to attempt to climb the mountain. He meets a sheep who encourages him by telling him that all he has to do is take one step at a time; just think about putting the left foot in front of the right foot and the right foot in front of the left foot.

Eventually Hugo makes it to the top of the mountain and is rewarded with a stunning view.

The "never give up" and "one step a time" lesson is interspersed throughout the story and is an easy way to talk to kids about a time in their own lives when they might have wanted to give up but kept going.

The author, Suzy Liebermann, believes "that happiness can be learned, feelings can be understood and that building character based on a positive attitude leads to happy, content, self-confident and successful human beings." She created this exciting series of charming books about Hugo The Happy Starfish.

Other books in the series on character education teach young children about their feelings, attitudes, choices and consequences. A few of those books are "It's Good To Be Me", "The Secret To Happiness", and "The Last Bully".

Disclaimer:
 I received one or more of the products mentioned above for free using Tomoson.com. Regardless, I only recommend products or services I use personally and believe will be good for my readers.

Half Popped Book Review & Giveaway

Half Popped is a new children's book featuring Kenny the Kernel - a half-popped piece of popcorn who doesn't feel he has reached his full potential ... because he was only half-popped when the microwave stopped.

Kenny is sad that he wasn't fully popped and feels like no one would want to eat a half-popped piece of popcorn and that he will languish at the bottom of the bowl.

He decides to take a little trip through the kitchen and in the process encounters other food items that for one reason or another feel like they are down on their luck as well. Among some of the foods he encounters are the baby carrot who doesn't feel as important because he's not as tall as the other carrots, the green and red grapes each wish to be the other color, the banana who has a brown peel and is too soft.

Even though Kenny feels depressed about his own ... life as a half-popped kernel, he maintains a more positive outlook for the foods he crosses paths with. He helps them see the good qualities and helps each one see itself in a new light with a new purpose. For instance, he tells the banana that even though its peel is brown and he is starting to turn mushy he is perfect to be used in banana bread. Kenny ends up cheering everyone else up and showing them the positive side of things.

This is an easy story that will appeal to young kids with the combination of photography and illustration and a silly, rhyming dialogue. The underlying message is a story about self-confidence and how the power of your positive words can make a person's day better.

With Kenny showing the other snacks that they can be used in different ways the lesson of the book is also showing that "there's a place and a purpose in this world for everyone" and Kenny finds out that's true for himself at the end of the book.What a great lesson for all kids to learn.

This would be a great book to have in preschool and Kindergarten classrooms to help foster discussions on self-confidence, differences, and having a different perspective on situations.

I have a copy of this book to also offer as a giveaway. If you would like a chance to win please leave a comment and make sure I have a way to contact you if you're the winner!

 

Bible Stories for Kids

Several months ago Lucas came across a Bible Stories for kids book and asked if I would buy it. He seemed really excited about the book and it was easy enough for him to read, so I said yes. It quickly became one of his favorite books; but it only has a handful of stories.

So when the Tyndale Blog Network was offering a book called Bible Stories that End with a Hug by Stephen Elkins to review I thought Lucas would enjoy this book as well ... and it has 75 easy-to-understand Bible stories.

This hard cover book is a great way to introduce younger kids to the stories in the Bible. It has charming illustrations and short descriptions of the stories that will keep a child's attention. Each page also contains a Bible verse, lessons on how to apply the story to your child's daily life, and a special 'hug time' at the end of each story. For example: the story on Love, Listen, and Obey features the verse from Exodus 20:12: Honor your father and mother. Then the lesson talks about honoring your parents by loving them, listening to them, and obeying them. Then it is Hug Time! "Give the one who honors their father and mother a great big hug."

It's a great way to end the night with a bedtime story followed by a great big hug.

 

Incidents In The Life Of A Slave Girl

I finally joined the world of e-readers and bought myself a Kindle at the end of November.

I've always loved reading (although I hadn't been reading as much lately as I used to read years ago). I wasn't sure if I would like an e-reader as much as having an actual book in my hands and turning the pages.

I do have to say its size and weight sure make it convenient and much easier to carry around.

I am now reading my 7th book since I received my Kindle; I think it's safe to say I'm enjoying it just as much as I do books.

I am reading books I most likely wouldn't have heard of before, much less read - thanks to my mother-in-law for letting me know about Pixel of Ink!

Every day an email is sent out with listings for free Kindle books and great deals on Kindle books. I look forward to these daily emails to see what new-to-me books I can download.

The first book I read was Incidents in the Life of a Slave Girl Written By Herself. 

The title alone was enough to catch my interest. It is a real-life account of Harriet Ann Jacobs, who was born in to slavery. The beginning of the book was a little slow and hard to get in to the story. But I am glad I kept reading and finished the book. It was inspiring to read of her perseverance and determination to escape to the free states and her will that her own two children wouldn't have to grow up as she did.

She gives heart-breaking accounts of families torn apart during auctions - parents never seeing their children again - and what female slaves had to endure in sexual advances and abuse from their owners.

It is a fascinating book to read and it contrasted starkly with a scene I witnessed last weekend.

Kayla went to the playground with 6 other kids from our street and one of the kids' older cousins.

There they were walking down the street: the older cousin and 7 kids ... including my Kayla ... the only white child in that group.

It made me smile watching them. I know everything isn't altogether perfect for race-relations; but it made me thankful for being born in, and living in, a time when a scene like that is possible.

 

The Boy Who Came Back From Heaven

The Boy Who Came Back From Heaven is a true story by father and son Kevin & Alex Malarkey.

It is the story of a tragic car accident that left Alex paralyzed when he was just 6 years old. In fact, the odds weren't great that he would even survive. But a couple of months later Alex woke up from his coma with an amazing story to tell. He was able to describe events that happened while he was unconscious and of what he witnessed at the accident scene after being flown away in a medevac helicopter. Alex shares his experiences and journey of going to Heaven and back; of angels, and of meeting Jesus.

It was interesting to read of Alex's experiences, his relationship with and faith in God, his perseverance and will to live ... even though he says he is eager to get back to Heaven. The community greatly surrounded this family with prayers, support and help when they went through such trying times.

I did find the book to be redundant at times; I know the book is about faith and Alex's accounts of 'miracles, angels, and life beyond this world,' but I felt that the point was made too often. I also wish that the book contained more of Alex's story and not so much of the father's account. Overall it was an easy, and heart-warming read.

Here is a trailer for the book.

watch on tyndale.com

I received a complimentary copy of this book from Tyndale Blog Network for this review; if you'd like to read the book please leave a comment and I'll send the copy to someone chosen via Random.org.


 

My Sister, Alicia May

No, I don't have a sister named Alicia May.  But I do have a sister named Kelly!

Lucas and I were in the library a few weeks ago and I did a catalog search on Down syndrome and children's book and found the book called My Sister, Alicia May by Nancy Tupper Ling.

I hadn't heard of it before so I found it on the shelf and the illustrations are what caught my eye first. This book is beautifully illustrated. The book is based on real sisters and the illustrator used photographs of them to illustrate the book ... which makes for some very realistic and life-like images of the two sisters.

Interestingly enough, the illustrator, Shennen Bersani, has a sister with Down syndrome, yet the publisher didn't know this when she contacted Shennen and asked her to illustrate the book! 

The story itself is told from the perspective of Rachel, the older sister and what her experiences and feelings are like with having a sibling who has Down syndrome. I found it to be an honest account in that Rachel describes some challenging moments along with all the wonderful moments that go along with having a sibling with special needs ... which really can be said for just having a sibling in general!

This book is geared towards the elementary age and I think it would be a great addition for families to have and read with their children. Even though Lucas is the younger child, I think he still identified with the story as I explained to him that Alicia May has Down syndrome, like Kayla. In fact, he asked if that was Kayla on the cover of the book!

 

Day 18 Giveaway: The Politics of Down Syndrome

The Politics of Down Syndrome by Kieron Smith is a book I've been wanting to read since I first heard about and am glad to finally have the opportunity to read it. It is definitely not your usual book on Down syndrome; nor is it even a memoir about Down syndrome; although Kieron is the father to a daughter who has Down syndrome.

This books takes a look at the historical descriptions of Down syndrome and how, even though we know so much more about it, our (society) thoughts and attitudes seem to have largely remained unchanged. Perceptions about Down syndrome are still steeped in decades old stereotypes. This has continued to affect attitudes and prevent full inclusion and acceptance of persons with Down syndrome in their communities.

Mr Smith also takes a look at the medical field and how the negative image of Down syndrome starts during pregnancy by applying the term "risk" to a prenatal test for Down syndrome. How much weight does it carry to say "Your risk of having a child with Down syndrome is (fill in the blank) percent." By applying the word 'risk' it seems to equal something negative happening. Using the word 'chance' would be much more neutral.

Since Mr Smith lives in the UK a lot, but not all, of the references are from that aspect, but can easily be applied to what is happening in the US as well.

I found this to be a very fascinating, and quick (it's a slim book) read. This is a great book for parents, educators and the medical field ... this is a book that should also be shared with and read by the general population outside of the Down syndrome community.

An excerpt from the book,
"The hurdle for society is to somehow come to appreciate the essence of the title of Dobzhansky's work that differences are not deficits, that difference should just be accepted. This does not have to be divisive, it does not have to mean that difference is celebrated in a way that divides communities, and rather it should appreciate the commonality in the human experience. Because we are all different, our genes and experiences, then a society that recognizes and appreciates the talents and difference of everyone, is a society that can truly be both enlightened and progressive. Ignoring status, wealth and power and focusing on what each person can achieve.

Now how do we get society to embrace differences?

Kieron is also a Trustee of Down Syndrome Education International and all proceeds from the book are donated to DSE. 

Kieron Smith has generously donated a copy of his book for this giveaway - thank you!

To enter leave a comment on this post and then click on the +1 Do It link on the Rafflecopter widget.

To earn more entries, and to spread the word about The Politics of Down Syndrome, you can like the Facebook page and Tweet about the giveaway. You can do each of those things directly on the Rafflecopter widget.


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Day 11 Giveaway: The Shape of the Eye

The Shape of the Eye by George Estreich is a memoir on "Down Syndrome, Family, and the Stories We Inherit."

I enjoy reading other books of other parents' experience with raising a child with Down syndrome (and obviously one reason why I follow so many blogs!) It's nice to find out that you're not 'the only one' who felt a certain way, or dealt with things a certain way. Sometimes you feel like it's just you until you read someone's story and it helps to validate your own feelings.

Sometimes other people can sum up your own complicated thoughts in a couple of sentences. When I read this in his book, "If Down syndrome were ordinary in the world, if a commonsense view of dignity and personhood and capability prevailed, then perhaps our early days would have been easier. But Down syndrome is not ordinary in the world." it reminded me of my post on Hope and Normalcy and in the end saying that maybe if Down syndrome happens so often, it must be a 'normal' part of the genetic make-up,  and how different the delivery of the diagnosis would be if the world looked at it this way. "If Down syndrome was ordinary in the world." Yes, indeed. If only the world did look at it that way.

As in every personal story there are differences too; George's story of raising his daughter differs from mine in that his mother is Japanese. When Laura was born and the doctor mention Down syndrome and a few of the characteristics she had - such as the upward, almond-shaped eyes - George was able to explain that away as inheritance since his mother is Japanese. For me, the first time I looked at Kayla's eyes I knew she had Down syndrome because of those almond-shaped eyes.

I like his take on two of the most common stereotypes: that children with Down syndrome are sweet, and that they are stubborn. He asks, "How can both be possible? If they are stubborn most of the time, or half the time, can they still be counted as sweet?"

While this memoir does describe Laura's birth, diagnosis, the aftermath, how they felt, how they came to accept it, how it became part of their lives ... it also goes deeper and beyond their own story of raising Laura. He explores how our attitudes about Down syndrome have come to be shaped by the descriptions and writings of John Langdon Down.

I enjoyed the personal family aspects of the memoir, but for me the most interesting chapter was the one on John Langdon Down. Mr. Estreich did a lot of research for his own knowledge after Laura was diagnosed, and for his book. I admit to not having done much research on the man. The only thing I really knew about him was he was the first person to describe individuals with Down syndrome and their characteristics ... and that is how it came to be named after him.

I knew that Dr Down described these individuals as "Mongolian" because the upward slant of the eye, but I didn't realize the history behind that. The whole chapter is very fascinating ... how Dr. Down tried to classify the people with Down syndrome into a race category; that he couldn't comprehend how they were born to Caucasian families yet had "Mongolian" features - so he thought it had to be a degeneration in the womb. Initially he speculated it to be the cause of tuberculosis.

I know that people with Down syndrome existed long before it was described; and this fact is written so eloquently in the book, "...the children existed before they were discovered; what changed, after Down, was the way they were known....even though we have rejected the name he chose, the terms of his description are still with us." 

One of the biggest revelations in this chapter, for me, was the fact that John Langdon Down had a grandson, also named John Langdon Down. This grandson was born after the elder John Down had passed away. This grandson was born with ... Down syndrome. I find that so ironic and fascinating. I keep thinking about that fact and wondering if anything would've changed with his view and descriptions of Down syndrome if he had been alive to know his grandson. (Also, how have I been in this community for 9 years and never heard this tidbit before? I can't believe I haven't come across that until now!)

The Shape of the Eye is a poignant and wonderfully-written story. It is a book that I think should be included on the list of books for new parents to read.

George Estreich is generously donating a copy of his book for this giveaway.

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Day 8 Giveaway: Meet Annie

Meet Annie is an adorable children's book written by Heather J. Scharlau-Hollis, who has a daughter with Down syndrome. Annie has Down syndrome and she describes all the way she is "just like you." This is an easy book for kids to read and gets the message across that, "We need to understand that we are all different and those differences make us who we are."

Each page shows Annie doing or feeling something, and then has a question for the reader - I like how that engages the reader to think about things too. For instance one page says, "I love to play with my toys just like you. I like my balls and baby dolls best. What is your favorite toy?"

I read this book to Kayla's 2nd grade class last year and all the kids seemed really interested and engaged. They liked the questions that are on almost every page. I would ask the questions to the class, "Do you ever get scared? Do you ever get in trouble? Do you ever need help? What is your favorite food?" and hands were always clamoring in the air so they could tell me their answers.

We've had this book for about 4 yrs now and Kayla and Lucas still like to pull it off the bookshelf and read it.

Heather is donating a copy of Meet Annie to this giveaway - thanks Heather! You can enter to win by using the Rafflecopter widget below. Leave a comment on this post and then click on the +1 Do It link on the widget.

To earn another entry, and to spread the word about Meet Annie, you can also Tweet about the giveaway. You can do that directly on the Rafflecopter widget.
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