Drop Zone

Last night, we attended a concert fundraiser for Easter Seals Drop Zone.

Drop Zone is an insanely exciting and terrifying event in which participants willingly rappel 150 feet down the side of Atlantic Place. Crazy.

Participants are required to raise $1000 in pledges while challenging their comfort zone, all for a great cause. All money raised supports Easter Seals' life-changing programs and services for children, youth and families living with disability in Newfoundland and Labrador.

Because I am a huge chicken and would never have the courage to do this myself, I am happy to support the cause by donating to those who are much braver than I.

Easter Seals volunteers and camp counselors, Erin and Travis organized a concert fundraiser with some amazing talent. Performers included Megan Glover, Abby Quigley, Chelsea Parsons, Naaman Barbour, Everglow, ESS, Justin Upshall, Travis Pickett and Séan McCann.

Megan Glover - 2014 Easter Seals Ambassador 

 Abby Quigley

 

 

 Séan McCann of Great Big Sea

Brennen, Andrew and I were very excited to meet Séan and to see him perform. As someone said last night, "He gets it". He knew why we were all there, and he wanted to be a part of it. He made a connection with our kids, and he involved them in his music. It was very moving, very emotional, and very much appreciated. Séan is actually doing the Drop Zone himself, and will be (as he says) "Falling off Atlantic Place" for a good cause. He is a brave soul, and should be commended for that! Thank you, Séan, for all of your support and involvement with Easter Seals. Thank you for helping to enrich the lives of our children. Thank you for getting it.

Watch this video of Séan and Carly singing the most beautiful version of 'You Are My Sunshine' that I've ever heard.

And here, Séan sings 'Imagine', with Josh rocking it out from the audience! Amazing!

"You may say I'm a dreamer, but I'm not the only one.
I hope someday you'll join us. And the world will live as one."

Check out Séan's new solo album here - http://www.seanmccannsings.com

 And donate to Easter Seals Drop Zone HERE.

Yippee!

You guys, I am so excited about this!

Yippee! Sheets are a new line of Canadian-made, stylish waterproof protection designed specifically for toilet training and bed-wetting.

Creator Nicole Maunder (sister of local film-maker Roger Maunder) is originally from St. John's, but now lives in Toronto with her two young boys. Nicole created her newly-launched line of sheet protectors after dealing with several "accidents" when toilet training her sons. Recalling how frustrating it was to wake up in the middle of the night and have to change all the bedding, she thought that there had to be a faster and easier way.

Cleaning up messes is an inevitable part of life as a parent, and may be even more-so for parents of children with special needs. Bed-wetting is a frustrating, yet extremely common problem for our little ones. For many, the issue continues into adulthood, making life very stressful for parents and caregivers.

I was excited to hear about this new line of Yippee! Sheets, and was anxious to try one on Brennen's bed. I love that unlike most sheet protectors on the market, the Yippee! Sheet is soft and cozy and goes on top of the bottom sheet, not under it, which means it is the only thing that needs to be washed!  If there is a leak or accident, simply pull it off the bed, throw it in the washer and reuse it over and over!

Another feature of the Yippee! Sheet is that it is silent! The bottom layer is waterproof, but not made of vinyl or PVC, which means that it doesn't make that noisy crinkling sound, making for a healthier, more restful sleep.

As parents of children with special needs would agree, our time is already stretched to the max, and every minute is valuable. Anything that can help decrease the amount of laundry and minimize our level of frustration is a win-win! In the short time that we've been using the Yippee! Sheets, it's been a huge time-saver and stress-reducer. I highly recommend them to anyone dealing with nighttime messes.

We have the green and white "Waterproof One-Size Bed Sheet Protector without Tuck-In Flaps". It's also available with tuck-in flaps, for people who move around a lot while sleeping. (It's hilarious how excited I am about this!!) These sheets are beautifully made with great attention to detail and a range of colours and patterns to choose from.

Check their website for the full line of waterproof products, including bed sheet protectors, and car seat, stroller and chair protectors, which would work great on wheelchairs as well!

Thanks, Nicole. You are one smart Mom!!

Check out this video to see how easy they are to use, and visit www.yippeesheets.com to view and purchase.

F-words!

Last week, I received a letter in my Inbox from McMaster University that read:

"Please find attached a letter inviting you to be part of a new 'F-words' in Childhood Disability Research Team (a collaborative team composed of researchers and families) at CanChild Centre for Childhood Disability Research."

The letter stated, "I found your website 'Tiptoeing Through' a few weeks ago when I was doing a basic Google search to see how "The F-words in Childhood Disability" are being used and shared. Since then I have been reading your stories and blogs and have been inspired by your writing. It is my pleasure  to write you today to invite you to be part of a new 'F-words' in Childhood Disability Research Team. We hope this is something that will interest you!"

Darn right this is something that interests me!

This research team includes Dr. Peter Rosenbaum, Dr. Jan Willem Gorter, Dr. Mary Law, and Andrea Cross, a PhD Student at McMaster.

I saw Dr. Rosenbaum present at the CP in Motion conference which took place in Halifax back in May. I was very impressed by his presentation on "The F-words in Childhood Disability", and I appreciated his perspective on the importance of a family-centered approach to child development.
I wrote about that here - http://www.throughthetulips.ca/2014/05/cp-in-motion.html

I am honoured and excited to accept the invitation and to join this integrated research team! 

Our goal is to address the knowledge needs of families with children with disabilities and to support the uptake of the 'F-words' concepts in children's health care.
 
Dr. Rosenbaum discusses the 'F-words' in Childhood Disability in this video, produced by CanChild.

A Mother Knows..

"A mother knows the words her child cannot say."

When your child is non-verbal, you have to be their voice. You have to be their protector and their biggest advocate. It is an enormous responsibility, but the challenges are far outweighed by the joy your child will bring into your lives.

Being Brennen's Mom has enriched my life in ways you cannot imagine. I have become an advocate, I have become a fighter, I have grown and changed and become something more.

Sometimes, those who can't physically speak are the ones who communicate the most important messages. Brennen knows how to hit me right in the heart. With Andrew's help, he gave me the most beautiful gift. This fine silver chain and pendant was custom made, hand-stamped letter by letter, and it speaks volumes without saying a word.

"A mother knows the words her child cannot say."

I wear it with pride, and as a simple reminder that "Not being able to speak is not the same as not having anything to say." - Rosemary Crossley 

The Little Illustrator

Jennifer Zetts is the artist behind The Little Illustrator.  I recently discovered her Etsy shop, and just melted with the sweetness of her original designs. Jennifer makes "cutesy quirky illustrations and cards" and she says, "I hope to put a smile on people's faces and bring a little happiness with each print that I do. I love life and take inspiration from everything in it." 

I had Jen do a custom illustration for Andrew and I (which I will post below), but there are so many in her collection that I just adore!

I am so happy to be able to feature Jen's work on my blog.  I initially intended for this to be a place to share some of my thoughts, feelings and things that inspire me, and I am absolutely inspired by this girl.  Not only is she a dedicated, hard-working mother of five, but she is also the mother of a very special little boy named Camden.  Jen writes about him here: 


"My most favorite print I have ever done is "You Are Our Perfect". It will always have a very special place in my heart. The print is inspired by my sweet Camden. Before I had Camden, I remember going to ultrasounds and my biggest concern was about whether the baby had ten fingers and toes. It was like if the baby had the correct fingers and toes that meant that the coast was clear. That everything was going to be ok. I know for a fact that I didn't once give a serious thought about genetic abnormalities, syndromes, feeding difficulties, hypotonia, etc. It's funny how mother's intuition works. Sometimes it's not until we look back that we as mothers realize how right we really were. How we weren't being crazy from lack of sleep or the emotions of the moment. That what we felt was more right than anyone could have ever imagined. When I held Camden in my arms for the very first time, the last thing I thought was how perfect he looked. I couldn't even physically see him because my eyes were so filled with tears. I knew something was wrong with Camden after holding him for all of 10 seconds. I just didn't know what. I remember unswaddling his arms and legs. Counting fingers and toes through blurry eyes, like that would somehow erase the sick feeling I felt and reassure me that everything was indeed alright. Doctors and nurses reassured me that "everything was perfect with my baby" and that "he couldn't be more perfect." Turns out, depending on your definition of perfect, Camden was born perfect. Camden was born with a chromosomal abnormality, a slew of other health issues, and was recently diagnosed with autism. He has had a rough road in his short life, but he is truly one of the most amazing people I know. Camden is exactly as he was meant to be. He truly is perfect, although I'm sure there are a dozen doctors that would be the first to say he is the furthest thing from. Who he is is who we fell in love with. His heart is amazing and I wouldn't wish for him to be any different than the little boy he is today. He is most definitely our perfect."

This is so beautiful, and so so true. Jen is an amazing Mom. She has a remarkable outlook on life, and possesses a wonderful talent.

Below is the piece she created for Andrew and I.

"How often do you find the right person?"

On Track

Brennen is a participant in a research study being conducted by CanChild Centre for Childhood Disability Research. The On Track Study is a collaboration involving researchers, therapists, families, and children with cerebral palsy from across Canada and the United States. The aim of the study is to describe the changes in balance, range of motion limitations, strength, and endurance, number and impact of health conditions, and participation in self-care, recreation, and leisure activities over a one-year period in young children with CP aged 18 months through 11 years.

This study will determine how young children with cerebral palsy or gross motor delays progress in many aspects of their physical development and participation in daily life.  The information collected from this study will help therapists and parents monitor if a child is developing as expected in his or her physical development and participation. Then, the health care professionals working with children can use the results of this study to provide the services that are most beneficial and meaningful for each child and their family members.

At our first visit, a physiotherapist assessed Brennen's balance, strength and range of motion. I was given a questionnaire package to complete that asked questions about Brennen, our family, the services we receive and questions about Brennen's fitness, health, self-care abilities, and participation in life activities.

There are three classification systems that are assessed in the Parent Questionnaire.
1. Movement Ability (Gross Motor Function)
2. Hand Abilities (Manual Abilities)
3. Communication Abilities

Each of the three classification systems are to be rated on a five-level scale, Level I being the highest level of functioning, and Level 5 being the lowest.

In the first section, Movement Abilities, Brennen was rated a Level 5: 
Children are transported in a manual wheelchair in all settings. Children are limited in their ability to maintain antigravity head and trunk postures and control arm and leg movements. Assistive technology is used to improve head alignment, seating, standing and/or mobility but limitations are not fully compensated by equipment. Transfers require complete physical assistance of an adult. At home, children may move short distances on the floor or may be carried by an adult. Limitations in mobility necessitate adaptations to enable participation in physical activities and sports including physical assistance and using powered mobility.

In the second section, Hand Abilities, Brennen was rated a Level 5:
Does not handle objects and has severely limited ability to perform even simple actions. Requires total assistance. Children in Level 5 might at best participate with a simple movement in special situations, e.g. by pushing a button or occasionally holding undemanding objects.

In the third section, Communication Abilities, Brennen was rated a Level 5:
Seldom effective sender and receiver even with familiar partners. The person is limited as both a sender and a receiver. The person's communication is difficult for most people to understand. The person appears to have limited understanding of messages from most people. Communication is seldom effective even with familiar partners.

So.. what does all of that tell me? After spending so much time answering question after question in each section with no, no, no, 5, 5, 5, fail, fail, fail.. you'd think I would be more than a little disheartened. In fact, this study isn't telling me anything I don't already know. I know that Brennen is dependent on me for all aspects of his care and daily living. I know that he is an ineffective communicator. I know that he can't hold on to things. The truth is that Brennen requires total assistance with absolutely everything, and he will continue to do so for the rest of his life. This is not new information. I have accepted that, and have come to terms with all that it implies. I'm not always happy about it, but really, being Brennen's Mom has enriched my life in ways I could never have imagined. It is an honour and a privilege, and I couldn't be more proud.

What this study is telling me is that people are trying. Researchers, doctors, therapists and parents are working together to try and create better outcomes for people living with cerebral palsy, and I appreciate that. 

I was informed in the beginning that there would be no immediate benefit to my child or family for participating in this research study, however with the help of a large group of families like mine, valuable information will be gained on how to monitor and provide future services for children with CP or gross motor delays.

How is everything?

It happens so often that someone will ask me "How is everything?" It seems innocent enough, but that is such a loaded question. I know people ask out of genuine interest and concern, but really.. everything?!  How much time do you have?

Perhaps it's someone I haven't seen in a long time, and they ask because they really don't know what has been going on in my life lately, and so they figure "How is everything" will cover all the bases.

It could be someone who does know some of the things that have been happening, but they don't quite understand Brennen's condition and all of the medical details, and so "How is everything" is a safe word choice.

In either case, my response is usually something generic like "Oh, we're good." or "Things are fine. Brennen is doing well."

Sometimes that is true, but most often there is a whole lot more to it that I don't share for a number of reasons:
#1 - I just can't be bothered getting into it at that time.
#2 - I don't want to come across as the complaining, whiny type.
#3 - I don't want to be seen as the crazy lady who shares too much information when all you wanted was a simple answer to a simple question.

I thought I'd take a minute to tell you how things are really going. Not everything.. but some things.

Brennen is still having his moments of absolute inconsolable distress (like I talked about HERE). We have seen doctors, done tests, and tried everything we can think of to try and comfort him and relieve his agitation, but nothing is working.

We've had him seen by a Chiropractor, who was super calming and gentle and very in tune with what Brennen needed and how his body responded. He saw him for several sessions, giving him slight adjustments each time. Brennen seemed to really enjoy the treatments, but there were no real lasting effects - meaning, it didn't solve the problem.

We saw both a Homeopathic doctor, and a Naturotherapist. They spent some time with Brennen, tested him for food sensitivities (Brennen reacted negatively to peanuts, wheat, rye, barley and apples), and prescribed a combination of homeopathic remedies to be dissolved under the tongue two times a day, fifteen minutes away from food (including toothpaste and gum), five minutes away from each other, and ten minutes away from other medications. They are to be kept away from electricity, magnets, strong aromas, and anything that gives off vibrations. Also, you have to clap three times and do the hokey pokey before taking them.

It's ok.  I got this.

I have to say (cautiously, yet optimistically) that Brennen does seem to be doing slightly better. Since he finished school last week, he's had some really good days! We think it might be because he is able to sleep in and wake up on his own time instead of me hauling him out of bed at an ungodly hour in the morning. I think sleep has a lot to do with it. I don't want to say too much and jinx it, but today was a good day, and I'm hoping tomorrow will be another one.
 

I'm sure it's the same for many parents of children with special needs. A simple question does not always have a simple answer. We even do it with each other. When a dear friend, and fellow CP Mom asks how I'm doing, I might just say "Oh, fine", when she knows full well that Brennen had a giant seizure and we ended up in the Emergency room on a Friday night.  Totally Not Fine.

I might ask the same question to another Mom and she will respond with something like "Oh, you know, pretty good." when I know that they've had a terrible week full of stressful appointments and they have been fighting with the insurance company over the ridiculously inflated cost of some essential piece of medical equipment .

I think we have a general understanding between us though, that we get it. We understand each other. We know that life is crazy and things get out of control, and sometimes it can be really really hard. We are on a roller-coaster ride that we never signed up for, and we just have to take it as it comes.

For those of you who don't have children with disabilities or medical conditions and who might not know what we are going through.. please continue to ask us. We might not elaborate a whole lot, but don't take it personally. We probably don't have the energy to talk about it, but we do appreciate you asking.

So.. how is everything? Things are good. Life is busy. Work is great. Andrew is awesome. Brennen has good days and bad days, but he is generally healthy and strong. The sun is shining and we have been able to get out and enjoy the warmer temperatures.

Life is beautiful and wonderful and horribly disappointing all at the same time, and there's no end in sight, and for that I am thankful. xo