The Weeks Before Christmas

In the weeks before Christmas,

the schedule is packed.

Not one evening is open, 

I'm feeling quite whacked!

Hockey practises and games,

dance lessons and swimming,

Carter's talker group too,

fill our weekends and evenings.

The days are so busy.

As a stay at home Mom,

I can't even imagine

holding a job too, like some.

I'm still volunteering.

At work hubby's hopping.

Our regular routine 

plus lots of gift shopping!!!

To our busy schedule  

is added such clatter,

I go through my day 

feeling like the mad hatter.

The hectic yet magical

season is here.

School concerts and parties,

 Santa's visit is near! 

And the children, unfazed 

are just happy to be,

on a hunt for their elf,

Where's she hiding? Do you see?

We'll survive, we will manage,

as all families do.

In fifteen days it'll be over

And the year will be through.

For now I will try

to embrace all that's here.

With this season of family,

of giving and good cheer.

Then hubby and I

will totally collapse.

We'll settle right in

for some long winter naps.

(What? Who am I kidding?

That won't be the scene.

We'll just start all over

In two thousand and thirteen!)

Our Elf on a Shelf, MunchMunch (the kids named her - don't ask me!)

Guest Post

I was recently contacted by Abby Brayton- Chung about doing a guest post for her blog, Notes From a Pediatric Occupational Therapist. Abby lives in New England and she blogs to share information and resources with other pediatric OTs as well as their clients.

She wondered if I would be interested in contributing to the Parent's Perspective section on her blog.

What a great opportunity to reach out to other parents and professionals.

Here's what I shared:

Parent's Perspective

Thanks, Abby!

Life Lesson Reminder: Halloween Style

Halloween is not one of my favourite holidays. The weather is usually questionable and that lovin' feeling I once had for costumes and all things dress-up, well, I've lost it. But, I braved the sloppy, wet, conditions and took one for the team (for the kids' sake).

Don't get me wrong, I don't begrudge kids for being super excited, candy seekers, running from house to house in pure exhilaration. Halloween is a right of passage for them. But I'm not a kid anymore so I reserve the right to express my feelings about the sugar high holiday.

When the night was all over I reflected on my time spent traipsing around our neighbourhood with my three kids and I found I had a better appreciation of my not-so-favourite holiday.

Thanks in no small part to Super Mario...er...Carter, I was able to see things in a new light. One of Carter's greatest hidden abilities is that he can make you take a different perspective on things. He puts a new spin on the everyday that can be quite liberating.

So, on that dark and stormy night, I came away with a lot more than just mounds of treats and a 24 hour sugar rush, I came away with a reminder of some of life's important lessons...

1. Less is More. Not everyone is in it for the loot. Carter didn't even want to carry his treat bag. He left that job up to me. He signed 'more' after every house we visited but he didn't mean that he wanted more sweets and treats, he meant, 'Let's keep going because this is fun!'

But of course! That's because...


2. It's all about the experience.  For Carter, it wasn't about being first to each neighbour's door or getting the most candy (see #1, re: me carrying his treat bag). He was just thrilled to be a part of the adventure. He was wearing a costume and he was going out with his siblings for some nighttime fun in the neighbourhood.
When we arrived back home at the end of the night, J & T sorted through their bags and they made sure to tell their Dad about everything they got. Carter, well, he tapped his chest in a 'me too' gesture and pointed to his bag to ensure Dad knew that he took part. Then he promptly abandoned his loot and that was that.

3. Take time to notice the little things. An animal lover at heart, Carter was much more interested in seeing the pets at each house we visited than getting candy from the adults at the door. So much so that he almost went in to a few houses to give the dogs a rub to say hello.

4. Be happy with what you've got. In his homemade Super Mario costume, Carter actually looked more like a hip hop artist at a Farm-Aid concert, but in his mind he was Super Mario and it seemed that he could've cared less what anyone thought of his costume. He had on his overalls, his red shirt and red ball cap. There was a masking taped 'M' on his hat (the best I could do without spending a ridiculous amount of money on an authentic Super Mario hat that would be worn once). The smile on his face said it all and it completed his costume.

We'd all do well to take a different perspective now and again and I'm glad that Carter reminded me that...

 5. Sometimes it's all in how you look at things.

I Believe in My Son, Will You?

You're always gonna find

It was worth it

If you just believe

Suzie McNeil's lyrics from her song, Believe have been dancing through my head since Tuesday night. They are a reminder that although there have been plenty of times when I've felt uncertain about Carter's future, I've never stopped believing that he will someday communicate functionally.

On Tuesday night I gathered with a group of parents and professionals to take part in Holland Bloorview's screening of the movie, Certain Proof: A Question of Worth.

The movie is a feature documentary about three children living with significant communication and physical disabilities, who struggle against the public schools in an emotional battle to prove their worth.

*Take a look at the trailer:

After viewing the movie, I participated in a panel discussion and was given the opportunity to speak.

I introduced myself to the audience and shared that my 9 year old son, Carter uses a Vantage Lite speech device to communicate. I didn't speak of the challenges we've faced with the public school system. I didn't speak of the struggles we've had trying to find support for Carter with his device.

Instead I reflected on some things from the movie that truly resonated with me: the loss of parental dreams and the challenge of replacing those dreams, the concern that children who communicate differently are often ignored, and the importance of making sure those childrens' voices get heard. Carter, and others like him, should be given every opportunity to learn to communicate functionally and to practise their right to communicate.

Looking back on Tuesday night's discussion, I wish I'd spoken to the audience about my belief in Carter's abilities and about how important it is to believe in your child and not give up hope.

When one of the moms in the movie broke down crying after having taken her son, Josh to a speech clinic in North Carolina, my own tears pooled and threatened to flow. This mom believed with all her heart that her little boy had something to say and that he was capable of communicating and learning, but no one else believed it. She went to North Carolina in search of 'proof,' something that is so often required from kids with communication challenges, proof that Josh had something to offer.

The speech therapist confirmed that indeed her son was a bright little boy with communicative intent and the ability to learn. When given the right tools, a little guidance, some motivating activities and lots of time, her son, Josh 'proved' that his mom had been right all along, he really was 'in there.' She wasn't crazy after all.

When Josh engaged in activities with the speech therapist, I wanted to cheer. I felt like I was reliving those moments with Carter all over again - the doubts about his language progression, the wondering if there would ever be more to his communication than a few simple signs and gestures, it all came flooding back to me.

I get what it's like to have to 'prove' to others that your child has a lot to offer. I've experienced the feeling of being alone in the belief that there's a lot more going on in your child's head than he's able to demonstrate.

This movie illustrates the unfortunate truth, that kids with complex communication needs are held to a different standard than their typical peers. They continually have to prove themselves.

If only there were some way to relieve them of this burden of proof, to create greater acceptance and opportunity for them, to get others to believe in them like we, their parents do.

To those who doubt our kids, I leave you with this...

You will see things you'll never forget...if you just believe...

Our kids (and their parents) can move mountains with dreams!

Be sure to read Louise Kinross' blog post about Certain Proof on Bloom:

If You Don't Speak, You Don't Count, Families Find

*Those who subscribe to my blog by e-mail will have to click on the title to go directly into my blog to watch the movie trailer.

The Child Who Never Grew

Here is another piece I wrote for the Waterloo Region Family Network (WRFN) blog a couple of years ago. Apologies to those of you who have already seen it. 

The Child Who Never Grew by Pearl S. Buck 2^nd addition, Woodbine House 1992, 107 pages.

The first cry from my heart, when I knew that she would never be anything but a child, was the age-old cry that we all make before inevitable sorrow: “Why must this happen to me?”

So begins The Child Who Never Grew, a story written by the Pulitzer Prize and Nobel Prize winning author, Pearl S. Buck. The book is based on a magazine article Buck wrote for the May 1950 edition of Ladies Home Journal about raising her daughter, Carol who was born in 1920 with phenylketonuria (PKU). PKU is the inability to metabolize specific amino acids which can result in problems with brain function. As stated in the introduction, written by Martha M. Jablow, “Buck was the first prominent person to acknowledge publicly a child with mental retardation.”

The 2^nd Edition of The Child Who Never Grew not only contains Buck’s first person narrative about life with her daughter, Carol, but it also contains unexpected wisdom in three additional sections of the book. The Foreword, the Introduction and the Afterword add significant history and detail that make this book complete.

The Foreword, written by James A. Michener provides a detailed account about Pearl S. Buck’s humanitarian work that involved the launch of “Welcome House, a meticulously run orphanage for unadoptable Asian-American children, most of them fathered by American G.I.s.” The American soldiers had served in Japan and Korea during World War II. Buck made it her personal mission to find homes for these babies.

After having read the original edition of The Child Who Never Grew, Michener felt he gained a better understanding about what spurred Buck on in her humanitarian work with Welcome House, “… I now understood the secret of Pearl Buck’s drive to save damaged children. Most were less crippled mentally than her daughter, but each was disadvantaged in her or his own way.”

The Introduction, written by Martha M. Jablow contains a historical time line that outlines the changing attitudes, beliefs and practises around people with developmental disabilities. The time line covered by Jablow stretches from a time in history where it was believed that mental disability was caused by evil spirits, to 1990 when legislation (Americans with Disabilities Act) was put in place to “bring down barriers and make workplaces more accessible to disabled individuals.” Jablow’s historical overview is detailed and informative.

The Story itself is timeless. It is a “moving portrayal of parents’ conflicting emotions as they come to terms with a child’s limitations.” When Buck, “writes from her heart about her personal pain and struggle with her daughter Carol’s condition, her voice is universal. She speaks to all parents who have travelled the same road – or who are just embarking on that journey as they discover that their child has some form of developmental delay.” (Jablow)

Buck explains that she writes the story because she wants her daughter’s life to “be of use in her generation.” The story is written in 1950, a time when attitudes concerning people with developmental disabilities are slowly starting to shift. Although Buck says her daughter has grown past a point where changing attitudes will make much difference to her, Buck wants her daughter’s story to in some way help this movement.

The Afterword is written by Janice C. Walsh, Carol’s sister. Janice feels that the title of the book is somewhat misleading. She explains that she was witness to Carol’s growth. She watched Carol “achieve her own potential”…at…”the Training School at Vineland”.
While Buck’s story tells of the emotional challenges experienced while parenting Carol, in the afterword we’re given a more detailed look at Carol’s personal interests and personality. Janice gives details of Carol’s accomplishments throughout her lifetime at the Training School in Vineland, New Jersey.


This book touched me on many different levels. Not only could I relate on an emotional level with what Pearl Buck went through as a parent, but I also gained a vast amount of knowledge about the history around mental retardation. The Child Who Never Grew could easily stand alone and while I found the story authentic and relatable I feel the book is enriched by the addition of the three sections described above.

I would definitely recommend this book to any parent raising a child with special needs. Buck’s emotional struggles are easily relatable. The book is rich with historical information that illustrates how far we’ve come as a society over the past few decades with regards to the acceptance of people with special needs. The Child Who Never Grew is an interesting read not to be missed.

Quotes About Communication

I love Rosemary Crossley's quote, "Not being able to speak is not the same as having nothing to say," so much so that I made it a permanent part of my blog page.

I did a search on the web to see if I could find other quotes related to communication. There are plenty out there but I chose only a few to share here. 

As I read the quotes, I was able to relate the message in each to Carter's situation. Here's the beginning of my collection of communication quotes:

"If we are strong, our strength will speak for itself. If we are weak, words will be of no help."  

--- John F. Kennedy

"To effectively communicate, we must realize that we are all different in the way we perceive the world and use this understanding as a guide to our communication with others." --- Anthony Robbins

"I'm a great believer that any tool that enhances communication has profound effects in terms of how people can learn from each other, and how they can achieve the kind of freedoms that they're interested in." --- Bill Gates

“The most important thing in communication is to hear what isn't being said.” --- Peter Drucker

"The most basic of all human needs is the need to understand and be understood. The best way to understand people is to listen to them." --- Ralph Nichols

“The biggest mistake is believing there is one right way to listen, to talk, to have a conversation -- or a relationship.”--- Deborah Tannin

“Communication really is the essence of being a human being,”  --- Katya Hill 

"The basic building block of good communications is the feeling that every human being is unique and of value." --- unknown

And finally, my favourite...

“You can talk with someone for years, everyday, and still, it won't mean as much as what you can have when you sit in front of someone, not saying a word, yet you feel that person with your heart, you feel like you have known the person for forever.... connections are made with the heart, not the tongue.”  

--- C. JoyBell C

What does communication mean to you?

Bentley's Biz: Fostering Freedom, The Story of One Amazing Foster Mom

Before I came to live with my boy, Carter, I lived with one awesome lady. Her name is, Elizabeth and she taught me everything I know.

She took me into her home and raised me to be a calm and obedient pup so that I could use my skills to help out a child with a disability. That child ended up being my buddy, Carter.  I've been his service dog for just about two years now. But I couldn't have done it without my foster mom, Elizabeth.

Click the link below to read a doggone good tail...er, tale about Elizabeth as a foster puppy raiser. You'll learn all about what a paws-i-tive experience raising a service dog can be. Now, go on, get reading. Arf!

Fostering Freedom

For more of Bentley's Biz click the links below:

The Lady in Blue and Her Friend the Dentist

A Word From the Birthday Boy

The Little Things Mean So Much

'Diversity in abilities forces us to define our own “normal” and allows us to choose what we celebrate.' Anchel Krishna  Today's Parent



I made note of a few language related things that Carter has demonstrated over the past few months. These are things that made me smile, laugh, or say, 'Yes!' They are things that made me realize how far Carter has come with his communication skills, both receptively and expressively.

Take a look...




Being considerate

Taylor came to the dinner table one night, after everyone else. We'd already said grace and had begun eating. As she sat down she apologized, "Sorry I missed grace," she said. Carter responded by pushing the button on his talker that was programmed with our version of grace, 'For our daily food, we are thankful. Amen.' We laughed and thanked him for the recap. He made sure that grace was said for Taylor, too.

Potty humour

Kids would not be kids if they didn't go through the potty humour stage. Jack and Taylor have been laughing, for what seems like years now, about the word 'underwear' and all things related. Carter is right there with them. He's found the 'underwear' button on his talker and just loves making his brother and sister laugh by repeatedly pairing underwear with someone's name.


Observing and commenting

Back in the heat of the summer we were sitting at the table eating lunch. Carter was doing his usual thing with his talker which is to converse a bit with us and then divert to exploring and playing around with his device (this basically consists of him randomly hitting buttons so that what he is saying doesn't make much sense - much like a toddler babbling and experimenting with new sounds and words).

So, when I heard him say mountain I didn't think much of it - probably just more exploration on his part. But then he paired mountain with beer and spoke both words together. That got my attention. Mountain Beer? Sounds cold and clear, like great tasting beer. I looked over and there was Carter pointing to my husband's can of Coor's Light. But of course, Mountain Beer!

note the mtn graphic above the label

Pushing the limits to get a reaction

Carter has the names of several people programmed into his talker. For my husband and I he has Mom and Dad (of course). I've added and deleted people's names over time as needed; classmates move away, teachers change, etc. Carter recently got a new therapist at school whose name is Stacey, so I programmed her name into his device.

One night during dinner, Jack and Taylor were talking about going for a swim after they finished eating. That's when Carter interjected with, 'Swimming Stacey.' I was pretty sure he meant me but I wanted to make sure he wasn't referring to his therapist - perhaps they'd talked about swimming at school. I asked him, 'Do you mean Stacey at school?' A big grin spread across his face and he pointed directly at me. He laughed and laughed and I couldn't help but laugh, too.

Jack and Taylor play around with calling my husband and I by our first names and it started a while back. But, this was the first opportunity Carter had to try it out and he loved it, giggling away - just like my other two. It was awesome.


Although some days it seems that Carter's language development and competency with his talker is advancing at a painstaking rate, he is definitely progressing - and it's often when I stop to take note of the little things that I recognize this.

Carter has demonstrated that he can show consideration toward others, he can make observations, he can get a reaction, and he can be a big goofball. These are the things that most parents take for granted with their children. 

One of the greatest things I've learned from Carter is not to take anything for granted and to appreciate and be grateful for the little things.

I'm not alone in this feeling. Take a look at some of the milestones my fellow bloggers are celebrating with their kids:


Max Walks Up the Stairs for the First Time

Grace

Sign Me Up

Before I started this blog, I did some writing for the Waterloo Region Family Network. Here's something I posted on the WRFN blog a couple of years ago when Carter was seven. The article was actually written when Carter was five. It was an assignment for a freelance writing course that I took. It tells of another form of augmentative communication that Carter used before he got his talker.

Parents would not be human if they, like everyone else in the world, didn’t follow new trends, especially trends that make life easier. You don’t have to search too hard to find the latest fads in baby gear and accessories. Products in the world of babies and toddlers change so drastically that it is often hard to keep up. Strollers become more compact and car seats become safer, with seat belt systems more elaborate than last year’s model. As the world changes, so too do the tools required for the job of parenting.

A current trend in the world of new parents and tots is to use sign language to communicate.  This consists of mom and dad learning a few basic signs likes more, all done, mom, dad, drink, cookie, etc. When mom and dad model these signs for their little ones, babies imitate what they see, enabling them to communicate with their parents long before their vocal chords are mature enough for speech.

Mom

Dad

Parents of a child with special needs learn to sign out of necessity rather than choice because often along with other challenges, their child has a delay in speech and language. Due to the recent trend of signing with babies, there are a variety of resources available to purchase or borrow from local libraries that assist with the learning of simple, relevant signs.

My husband and I anticipated speech difficulties with our son, Carter because he was born with a cleft palate. However, the cleft palate did not explain why our son was not developing speech and language skills at an age appropriate rate. Over time, we made a gradual discovery that our son has global developmental delay.

Carter’s signing vocabulary grew over time.  We started by teaching him food items and then moved on to his favourite toys. We have since taught him signs to label specific items of clothing as well as colours.

red

Initially a child must be motivated by an item in order to learn to sign for it. It was no surprise to us that Carter’s first signed word was cookie. Although motivated to copy the hand motion that we showed him in order to be rewarded with a cookie, the process was painstaking initially, due to the amount of demonstrations, and repetitions needed before he finally caught on to what was expected of him. In the end it was very rewarding for both Carter and me. Carter got what he wanted because he now had a way to express himself and I was able to provide for him at his request.

It is often very easy to give a child what they want if they point or motion toward the item.  Parents fall into the habit of giving their child what they want before they even ask for it. It was helpful to create opportunities to teach Carter new signs by hiding an item or putting it out of reach so that he was forced to request it.

Carter’s fine motor skills are delayed which created some challenges around certain signs, as some hand motions were too complicated for him. When this occurred, we would revise the sign to make it more manageable for Carter. We also created signs so that he had a way to name certain family members, as well as friends.

At [seven] years of age, our son interacts with a variety of people often away from home.  Unfortunately, it is not feasible for us, as parents, to expect everyone that Carter sees on a regular basis, to learn sign language.  It has been a very beneficial method of communication that has bridged a gap between Carter, his family and his therapists.  However, we’ve recently made the transition to the next level of communication with Carter, a voice output device.  Unlike baby sign, a portable, talking computer device is not all that trendy, but just as strollers and car seats have evolved, so too must my son’s method of communication.

So much has changed in the world of technology over the last few years. We are now in the golden age of the iPad with AAC apps being developed at a rapid pace. If Carter had been born just a few years later, things may have been quite different. I may or may not have gone the sign language route with him. Nevertheless, I'm grateful that he has a back-up method of communication for when his talker is unavailable to him and I'm thrilled that we live in the age that we do because so many high-tech options have become more readily available to those who are non-verbal.

The Little Red Hen: Special Needs Version

Once upon a time there was a boy named, Carter. Things that came easily to other children did not come so easily to him. He did not develop speech in the way that other children do. Instead, he learned to communicate using gestures and sign language.

One day, after 3 and a half years of waiting, Carter came off a very long waiting list and was eligible to receive services in augmentative and alternative communication (AAC) at the local children's development centre.

He was prescribed a high tech voice output device and his family was very happy that he would finally have a voice.

"Who will support my son in learning the constructs of language so that he can become a competent communicator with his speech device?" his mom asked.

"Not I," said the speech pathologist at the local children's development centre. "I am here to help you obtain a device for your son. Then I will provide some basic support with device programming but because our waiting list is so long your son will then be discharged from our services and his school will be responsible for supporting his communication needs."

When Carter went to school that fall with his talker, his mom had a meeting with the school board speech pathologist and the classroom teacher to talk about how excited she was that Carter finally had a voice output device. She provided lots of information about the device as well as suggestions on how Carter could use it during class activities. Carter's mom remembered that a communication disorders assistance (CDA) had worked with Carter the previous school year so she asked,

"Who will support my son in learning the constructs of language so that he can become a competent communicator with his speech device?"

"Not I," said the school board speech pathologist. "I will consult with his teacher and make suggestions,  but then it will be up to her to help your son learn to use his device within the classroom."

Carter's mom looked to the teacher.

"Not I," said the teacher. "Your son's device is very overwhelming and complicated. I am a new teacher and I have all these other students to worry about."

Carter's mom was not happy with the answers she received. She asked about whether the communication disorders assistant (CDA) would work with Carter and was told that he would receive very few, if any sessions with a CDA. She asked if the Educational Assistants could help Carter with his device but was told that their time would be divided equally between all the students in the class with special needs so Carter would not receive any one on one help.

"We will do it ourselves," said Carter's mother and father. "We will do whatever we can to help Carter learn to use his talker. But there must be someone out there who can help us support our son so that he can develop functional communication skills."

************************************

Throughout Carter's childhood I've gratefully accepted whatever professional help that's been available for him and I've done my best to work with those supporting him. But the truth is, the services provided have not always been adequate.

Perhaps the problem lies with budget cuts or a lack of funding for programs, or the fact that Carter has complex needs in specific areas. Or perhaps it's due to the people we've had to deal with. Whatever the reason, I've found that too often the answer to my question, "Who will help us?" has been, "Not I."

Just over two years ago, my husband and I became so frustrated with Carter's school situation, and with the lack of support around his communication needs, that I decided to research other alternatives. What would it take for Carter to be challenged academically while receiving support with his talker?

My search began within our local school board. But, I quickly realized that they could not provide what Carter needed.

So, I decided to investigate private schools and I found a few that warranted visiting.

One school in particular stood out from the rest and after sitting down with the school's administrators to hear about their mandate, about the services Carter would receive, and about the supports that would be put  in place if he were to attend, I came away feeling elated by what I'd learned but at the same time feeling like I wanted to cry.

My husband's reaction as we got in the car after the meeting was one I will never forget. He shook his head, then looked at me and said, "Now what do we do?"

Of the schools we'd investigated, this one was a good fit, no, a great fit, and we both knew it. But there was one major problem - the school's location.

After weighing things out, and exhausting all possible scenarios (and ourselves in the process), my husband and I came to a decision. We had to try to somehow make this work for Carter. We did not want to look back in five, six...ten years and say, "If only we had..."

And that's why, just over one year ago, our family moved from our home town; the area where my husband and I grew up, where our family and friends live, where my husband's business is located, to a place an hour and a half away - on the other side of Toronto.

Some might say that it was drastic to move away from all that we know and love, and from our family's main source of income. Maybe that's true. But, we felt we had to give it a shot.

We've lived here for just over a year and Carter has been attending his new school for that long as well. He even attended during the summer months.

Is the situation ideal? As ideal as it can be. Five days a week my husband commutes back and forth across Toronto for work, to and from the place we used to call home. What should normally take an hour and a half can often turn into a three hour drive (or longer), depending on traffic. Enough said.

Has Carter found success at his new school? So far, yes (thank goodness!). And he is being challenged academically while receiving support with his talker.

I got tired of the "Not I" response that I received when asking for help. But I didn't know where to turn for support. So, my husband and I took things into our own hands to try and solve the problem ourselves.

In an effort to improve the support system for those who are experiencing similar issues, I'm involved in a project created by Kilometres for Communication to develop an AAC network. The network will bring the AAC community - parents, AAC device users, and professionals (SLPs, OTs, CDAs, etc.) together.

Although the project is in its early stages, once up and running, the AAC network will be a place to turn for anyone who has a family member or close friend who needs, but does not have, adequate access to AAC services. For those out there asking, "Who will help us?" the answer will be a resounding "We will!"

Am I Going to Keep Mourning What Isn't?

I've been keeping things fairly light here. I've stayed away from blogging about anything too deep or emotional. A specific post that I read recently, on a blog that I follow, got me thinking. The post was from, The Fragile X Files and it was entitled, Comparing Apples to Apples. The post is about one of the inevitable pitfalls of parenting - comparing your kids to other kids.

When it comes to children with special needs, the act of comparing is a slippery slope. The adage that children develop at their own pace is no longer a relevant excuse for missed milestones,

"...there's a standard by which children are expected to have reached certain milestones. How else would they come up with what is standard and typical, without comparing? How else could they determine who is developmentally delayed?"

The author speaks of comparing her twin boys (both of whom have Fragile X Syndrome) to typical children:

"...as a parent of children with developmental delays for several years now, you'd think I'd be better at not comparing them to other kids..."

She goes on to say that comparing her boys to children within the Fragile X community is often more challenging for her because it means that she is comparing 'apples to apples'. Those more severely affected by the syndrome (like her boys) stand out from those who are only mildly affected.

After reading the post, I decided to leave a comment for her. Here is part of what I said:

My son doesn't have a diagnosis - other than the catchall ' global developmental delay.' I spend my time wishing I could find other kids like him so that I could compare apples to apples. He is non-verbal and it's hard to compare him to kids that can verbalize their wants and needs, their likes and dislikes.

I could have written more, but instead of filling the comment box, I decided to write my thoughts here.

Like The Fragile X Files author, I don't spend a lot of time comparing my son to typical eight year old boys. Carter is so far removed from where he should be developmentally that I try hard not to go there too often, and when I do, it's never for for very long. 

I have, on several occasions, compared him to other children with special needs though. I even wrote about it a few years ago on Bloom. 

Back then I was comparing him to the kids in his horseback riding group. Lately, I've been comparing him to his teammates on his Challenge League soccer team.

I compare and I wonder, if I could snap my fingers and magically changes things, would I trade Carter's inability to speak for a different disability? Would I rather he be challenged with a physical disability but be able to call my name? Would I rather he have behaviour issues but function at a higher level cognitively?

I don't have the answers to those questions. Nor do I need to come up with answers, because I won't ever be able to magically change the fact that my son is non-verbal and has a cognitive disability. 

In the end, it comes back to a question the Fragile X Files author asks, All through his life, am I going to keep mourning what isn't? 

Someone else left a comment in response to her post,

Mourn, move on, enjoy the positive moments, then cycle through it again.

Sometimes that's all we can do.

Bentley's Biz: The Lady in Blue and Her Friend the Dentist

I sensed my boy's anxiety level start to sky rocket the minute we stepped through the door. We were hit by weird smells and sounds, and there were kids everywhere. Carter scrunched up his face and jumped up and down. His arms flailed. His mom sat down on one of the chairs and tried to talk to him.

I sat beside her, but Carter wouldn't sit. He was too upset. My boy was pacing the room like a pup during a thunderstorm. The toys and the TV distracted him for a bit, but then like a rumble of thunder the noise in the waiting room would bring him back and he'd remember where he was and what was about to happen.

I got comfy on the cool floor and had a nap; a 35 minute nap. That's how long it was before they called for Carter. Carter's mom was not happy about it. My guy was nervous enough without having the extra long wait.

A lady dressed in blue lead us down a hallway to a little room. Smack in the middle of that room was a long, narrow chair. I picked up a whiff of cherries and bubble gum.

Then I watched as Carter's mom and the lady in blue tried to convince Carter to come into the room and sit in the chair. Carter was having none of it. He cried and planted his paws firm as his mom half dragged, half carried him into the room and over to the chair.

That's when I sensed anxiety, but it wasn't just coming from Carter this time. His mom was tense too. She had to sit with Carter and hold him in the chair so he couldn't get up. I wish I could've crawled up into that chair with them to try and make them feel better.

The lady in blue kept talking to Carter like he was a two year old. That made me want to nip at her ankles. My boy may not be able to talk, but that doesn't mean you should treat him like a pup.

There was a TV on the ceiling and that helped distract my pal for a while. He actually calmed down for a bit, even when the lady was sticking things in his mouth.

The worst was when the lady left and said she was going to get her 'friend, the dentist.' This dentist person was going to come back and count Carter's teeth. So, she left and Carter's mom stayed sitting with Carter so that he couldn't get up (I watched knowing that if he got out of that chair getting him back in would be like trying to push a cat into a dog house).

But, the lady in blue didn't come back right away. Carter started getting more and more upset because his mom wouldn't let him out of the chair. And his mom kept trying to explain that first the dentist would come look in his mouth and then we could leave. Carter's mom told him that she didn't know where the dentist was or why it was taking so long. Then I heard her say something like, 'Where are they?' and 'ridiculous.'

When the lady in blue finally came in with the dentist she explained that they'd been 'discussing how they might go about getting an x-ray of Carter's mouth.' That's when the tension vibes that Carter's mom had been giving off turned into anger vibes.

Why couldn't the lady in blue and her friend the dentist talk about all that stuff after they were finished with Carter? What's with these humans anyway? Dogs would never be so cruel. We might do weird stuff like sniff each others' butts, but we'd never purposely keep a fellow canine in distress like that.

Carter's mom told the dentist she didn't think it would be possible to get x-rays because that would require Carter to sit still and he obviously wasn't going to do that. The conversation went back and forth until finally Carter's mom agreed to bring Carter back in a month so they could try doing an x-ray then (I think she just said that so that we could get out of there).


But, poor Carter. I guess he'll be seeing the lady in blue and her friend, the dentist again soon. Makes me want to howl  just thinking about it.