Thursday, 30 August 2012

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!"

Tuesday, 21 August 2012

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:

" 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.

Tuesday, 14 August 2012

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.

Friday, 10 August 2012

Versatile Blogger Award

I opened up my e-mail the other day and saw that I had a comment on my last blog post. I'd been nominated for the Versatile Blogger Award. The comment was from halfpastnormal blogger, Angela, and wow, it made me feel like quoting Sally Field when she accepted her Oscar in 1984, "You like like me!"

I started blogging because I love to write and because I wanted to keep friends and family up to date on what was going on with our family. That quickly evolved into wanting to share about Carter, in hopes that I might connect with other special needs parents, and that developed into wanting to advocate and raise awareness about people who communicate differently.

I now have a More Than Words Facebook page where I share my blog posts, and other info about disability issues. I'm also on Twitter. And I'm happy to say that I've made connections, and continue to make connections, far beyond what I ever imagined. There are so many amazing bloggers out there, I can't keep up. And not just special needs bloggers - people blog about anything and everything, it seems!

I still have a lot to learn about blogging and social media, but I'm enjoying my experience so far. So, thanks, Angela for liking me nominating my blog. I really enjoy reading your blog and I know that others will too.

A bit about halfpastnormal:

Angela blogs about living in the world of special needs. Her husband has ADHD, her son has Duchenne Muscular Dystrophy (DMD) and sensory processing disorder, and her daughter has Prader-Willi Syndrome (PWS). And, if you can believe it, she is a special education teacher. With all this on her plate, Angela still has a great sense of humour.

Now, go to this link halfpastnormal and check out Angela's blog. You won't be disappointed.

Here’s more information about the Versatile Blogger Award
If you get the award, here are the rules:
  1. Thank the person that gave you the award in a blog post & link back to their blog.
  2. Pass the award on to 15 bloggers you follow.
  3. Include 7 random things about yourself in your post.
  4. Include the rules in your post.
  5. Notify your nominees by leaving a comment on their blog.
Here are my top 15 10 in no particular order (Yes, I only have 10 bloggers on my list. What can I say? I'm a newbie blogger. That's my excuse, and I'm sticking to it.):

Mom-ology  autism mom, home schooler, martial arts expert, blogger with loads of give-aways.

Hormone Soup  blogging about hormones and how they impact our bodies...from PMS to infertility to miscarriage to post partum anxiety. She covers it all.

Uncommon Sense  blogging about her family life and about her 3 year old daughter who has global developmental delays and who uses a speech generating device to communicate.

21 + 21 + 21  blogging about her thoughts on Down syndrome while living in Mexico City with her family (you have to click the link to check out her beautiful baby girl)

A Vision For Our Kids  an inspirational blog for parents - follows the philosophy that in order to raise happy, healthy children, parents need to be happy and healthy too.

I Miss You When I Blink  humour writer who blogs about life. She takes the everyday and makes it laugh out loud funny.

Listen To My Words With Your Heart   a blog about family life and raising a child with special needs (Childhood Apraxia of Speech / CAS)

With A Little Moxie   blogging about travel and family life with two children, one with Down syndrome

Momaical  she takes the 'been there, done that' moments of Stay-At-Home-Momhood and writes them into stories fit for a stand-up comedian.

Herding Cats  an American living in Ireland who is writing a book. She has four children. Her youngest daughter has a developmental disability.

And finally, here are 7 random things about me:

1. I love chocolate.
2. I'm a hockey fan. Go Leafs!
3. I hate reality TV. In fact, I don't watch much TV at all. I'd rather curl up on the couch with a  good book.
4. I have big feet which makes it hard to have a shoe fetish. I'm just happy when I can find some half decent shoes in my size.
5. I'm five foot eleven but people never accept that as my height. They insist that I must be 'at least' six feet tall.
6. I have blue eyes but people never accept that as my eye colour. They insist that my eyes are green.
7. Apparently I don't know myself very well (see random things #5 and #6). The chocolate, hockey and book loving I am absolutely sure about. Oh, and also the size of my feet. I keep waiting for someone to insist that they aren't really that big. Doesn't look like that's going to happen anytime soon.

Saturday, 4 August 2012

Road Trip to Pittsburgh for AAC Camp

Recipe for One Fun Road Trip
2 adults  (me, and my mom, a.k.a. Grammy)
1 child (a.k.a. Carter)
1 Honda Odyssey, full of gas and packed with all the necessities

1 GPS system
1 itinerary filled with fun activities including, stopping for lunch, shopping at the outlet mall, and visiting the Warhol Museum with some AAC camp friends. 
  1. Place 2 adults and 1 child in Honda Odyssey.
  2. Set GPS for destination: Omni Hotel, Pittsburgh, Pennsylvania.
  3. Head toward destination, allowing for 5 hours of driving time and 2-3 hours for various stops along the way (lunch, shopping, etc.).
Seems easy enough, right? I would have thought so, but somewhere along the way the 'recipe for one fun road trip' turned into a recipe for disaster.

Okay, I'm being dramatic. It wasn't quite that bad, but certainly the 'recipe' changed shortly after we set out:

Recipe for One Fun Road Trip

2 adults (still me, and Grammy)

1 child (still Carter) but now a Carter who doesn't want to eat anything and who continues to rub his tummy while making a sad face.
1 Honda Odyssey, slightly less full of gas and still packed with all the necessities

    1 good for nothing GPS system that is only capable of 'searching for GPS signal' after leaving New York State and entering Pennsylvania. (Thankfully we had directions on paper as a back-up. There's no fun in trying to navigate the city of many bridges without some source of directions. This I know from experience).
    1. Substitute 1 stop at the outlet mall with many stops at various unknown locales with some disgustingly filthy rest rooms visited because of the 1 child rubbing his tummy.
    2. After 10 hrs. of being on the road, add:  
    At Warhol: signing lion & saying it w/ talker 
    • 1 short visit to the Warhol Museum
    • several hugs between 1 child and his buddy that he met at camp last year
    • 1 hotel check-in
    • 8 hrs. of mediocre sleep
    3. After 8 hrs. of mediocre sleep. Check on child.

    When we finally arrived at the hotel on Friday night I was optimistic, thinking that if Carter could get a good night's sleep he would be fine the next morning, back to his old self, and able to take part in some camp activities. Instead, after a mediocre night's sleep, he did what I was afraid he was going to do during our car trip the previous day. He threw up. Twice.

    And that's just the way it goes sometimes.

    So, Carter and my mom hung out in the hotel room for most of Saturday. Carter rested and my mom watched the Olympics. And I attended some parent information sessions and hung out with the parents of Carter's buddy that we met last year.

    Thankfully, Carter did not get sick to his stomach again. He made a gradual recovery so that by 2:00 Saturday afternoon he was up and about. We took him to join the other campers for a scavenger hunt and he loved it. 

    These pictures say it all. Even though Carter was sick for part of our trip, it was totally worth the drive.

    Carter & his buddy, Jake taking a break from camp activities.
    Just one more hug, 'kay, Jake?

    I hope to eventually write in more detail about some of the following things I experienced on our trip. For now here's my list of things worth mentioning with some links:

    • Soergel Orchards  This was a place we happened upon during one of our stops. They have a gift store, a country market store with a deli, bakery and all kinds of food and goodies for purchase. There is a garden centre, an education centre, and lots of other things worth checking out.
    Carter loved the mini train...

    ...and the farm animals.
    • I had the pleasure of meeting Chris Klein and his wife, Dawn. Chris is an adult AAC user who is featured in the film, Only God Could Hear me. Check out his video, Building Relationships through the Tools of Communication.
    • I attended Jane Odom's (Prentke Romich Company) parent seminars and learned about 'Building Communication Competence for AAC Device Users,' and about 'Circles of Communication Partners'
    • Diane Nelson (Temple University, Philadelphia) also spoke during a parent seminar, about her e-book called, Daring to Dream: Turning Dreams into Reality The book is, "an experience-based guide to dreaming and developing an action plan to turn that dream into a future reality. Hundreds of individuals with disabilities who have little or no functional speech have thrown off years of oppression by daring to dream and by turning their dreams into realities." I downloaded a copy of the book and I can't wait to get reading. 

    • And finally, I had the pleasure of meeting, and chatting briefly with, Tom Banks, another adult AAC user. Tom travelled from Australia to attend the ISAAC conference (which was held in Pittsburgh right after Carter's camp). I bought his book from him and I'm almost finished reading it. Tom is a young man who hasn't let anything get in the way of achieving his goals. He is truly an inspiration.