There’s a common theme in conversations I’ve shared with other parents of children with disabilities. We often talk about our experiences and the challenges we’ve faced finding information, resources or services for our children. One mother posed the question…”Why the secrets?” I knew exactly what she meant. Sometimes it seems as though information that should be easily available, is instead protected like it’s the last can of food amongst a starving community.  It’s not the first time this question has come my way. It also wasn’t asked with the expectation I should have an answer.  It was more a common ground with a hint of sarcasm and frustration.  Read the rest of this entry »

A friend of mine has an adorable son who right now is trying to understand why cars are moving so quickly, why the buildings are so tall, the lights… there is so many lights, the sounds…..Mommy make them stop. As I type this post, he is experiencing sensory overload and his Mom is doing her best to calm him, all the while knowing she is exhausted. Her heart pumps like thunder with the occasional strike as she tries to slay the many dragons that are coming at him and convince him everything is okay. At the end of the day as his tired eyes finally close, the noise is quiet, the sights and smells go away; she takes a moment to breathe.

 

Her son, Mr. C as she likes to call him, has a variety of chromosome disorders: Chromosome 15q Duplication Syndrome (Dup15q), 17q and 3q23. Seizures, cognitive delays, behavioral problems, fine motor delays, anxiety, sensory processing, speech, language and even sudden death are some of the many characteristics of children like Mr. C.   He is the only documented child in the world known to have 3q23 Chromosome Syndrome. As I type that, I can’t imagine how terrifying that must be for his mother and father. Mr. C is too young to understand. Read the rest of this entry »

When I was young, Thanksgiving dinner was family time. My mother would make the usual turkey dinner with all the fixins and have the table set with her best china and autumn decor. I remember the aromas that came from that kitchen like it was yesterday and the desserts were simply too hard to resist. Gradually, we all resembled the overstuffed turkey that had graced our table. If we weren’t already prepared for the feast by wearing loose clothing; it was the moment my sisters and I would descreetly undo the top button of our pants and let out a sigh of relief. It was a table filled with love and laughter.

 

Those years have long past, and getting together with family has become next to impossible. I’m thankful for those memories and hopeful we’ll someday share Thanksgiving again. Over the last few years, Thanksgiving has been spent with other family and friends. Though I miss the old days, it’s these times that I feel so fortunate to be welcomed and loved by so many.

 

My little girl is having a hard time sleeping tonight and though this might be selfish, I’m thankful for that too. It means I get one more cuddle as I try to get her to close eyes for sweet dreams. 

 

Best Wishes everyone. Thank you. 

 

September has come and gone. The first 30 days of school can be daunting for parents of children with special needs. They always are for me. With Halloween fast approaching, I’ll offer up a more dramatic view and compare a new school year to a Hollywood Vampire, Count Dracula. 

 

In his cunning ways, Count Dracula would gain your trust, seducing you into believing he was all that and more. Inevitably, you would descend into the illusion that with him, everything will be okay. Then later, he sneaks in for a piece of you, bite after bite, sucking the life from your body. 

 

When September rolls around, we do our bests to get our children settled in school. By October, you really hope they’ve gotten there. You go through classroom, teacher, support worker, therapists and equipment changes.  You have Individual Education Plan meetings (IEP) to set out goals for your child. You explain your child’s needs to your team in the hopes that they will see what you do. You bust your butt making sure everything is ordered, installed and set up as quickly as possible. You push for training and you do training with support workers and other staff. You fight for school buses, inclusion, services, etc.  Then if you’re lucky, it’s all in place and you get to breath. If you’re not, you realize that no matter how well planned and what your goals may be for a smooth start, you’re not getting one. Like Count Dracula, all this effort takes pieces of you. It sucks you dry and you’re there, flat on your back, too tired to plump your pillow, wondering what if any fight you have left in you.

 

I’ll spare you the details on how the start of this school year has sucked the life out of me so far. Though you wouldn’t know it from my analogy above, I actually feel somewhat fearless this year. There is no sign that some of the challenges are coming to an end anytime soon, but I’m not afraid. I’m getting lots of practice fighting for my child and with that I’m stronger.  Sure, I’m tired of going through this year after year, but she’s worth it. So in those moments when I feel like I’m down for the count and wonder is there any fight left in me, I learn how to rise from the dead and grow my own fangs.

It won’t be long until children are giggling up and down our streets in colourful costumes. Pumpkins will line our pathways and glow sticks will be hoping about in the darkness. Personally, I think Halloween is right up there on the list of ridiculously fun times. Nothing motivates a child more than candy of course, but creating spooky crafts, reading ghostly stories, watching scary movies, visiting the local haunted house and dressing up in their costumes; that’s what makes it fun.

For adults, most of us enjoy watching the little bodies with painted faces and fangs come to our door. The pretty princesses and swashbuckling pirates yelling “Trick or Treat” make it entertaining. 

I love decorating my house and garden at Halloween more than Christmas. I enjoy making crazy costumes and seeing how many other adults decided to step out of the norm and into the land of make believe. Observing what wacky ideas for costumes people come up with is half the fun. Costume ideas for a person using a wheelchair could be the biggest trick or treat.

A friend sent me a link that brought a smile to my face. There are some seriously creative people out there. Check out these homemade costume designs. If you have others I’d love to see them too. Drop me a comment or email me a picture. 

For the coolest homemade costumes, click here.

Enjoy.

To those that read my posts, you may be wondering why I haven’t been diligently writing my blog lately. Events out of my control have made it difficult for me to write. There is no doubt in my mind that we all experience times when we have to put everything else aside for family. For that reason, I hope you will understand when I say I’m doing the best that I can.  The recent illness and loss of a dear family member has been weighing heavily on my thoughts and I just can’t seem to focus on much else right now.

 

Today I heard a story of how a young family that has a child with autism, found some much needed help thanks to this blog. Knowing that I have helped in some way is a wonderful feeling. It also brings a sense of guilt when I’m not up to writing. So, forgive me for this short pause in my posts. Guilt isn’t healthy either, so I will forgive myself for this imperfection.

 

This summer I’ve repeatedly felt like I’m swimming against the current, so to speak. It’s time to come up for air and just float. I’ll write again soon, till then. . .    Smile – Nat King Cole

A while back, I read that Conductive Education was an unproven form of therapy. For over 60 years Conductive Education has been practiced around the world yet it’s still considered unproven. If something has been practiced for that long and so many people have had positive results, just what exactly makes it proven? How many studies have to be done in order for it to weigh in as a successful therapy? How many studies have actually been done on physiotherapy to confirm that it is successful?

 

As you may know from previous posts, the decision was made to send our daughter to a Conductive Education camp this summer. Within the first week of the program at Ability Camp, I watched my daughter do things I had never seen before. Sure to others they might not even notice these small little milestones, but I did. Read the rest of this entry »

If there is one thing I’ve noticed over the years, parents of children with disabilities are extremely determined individuals. We fight hard and pursue every option until we get our children the best possible treatment or service. Lack of funding, staff, understanding of our children, and so on, prevents us from giving our children what they need quickly and easily. We are frequently forced to look elsewhere for help. In rural areas, there are even fewer options and the ones that are there, might not be suitable. So, we travel hundreds of kilometres away in the hopes of improving our child’s life.

 

I’ve done a few long trips now for services my daughter could not get at home. As always, it’s a struggle to cover the enormous financial burden it can place on a family. Here are a number of options to assist with travel costs that you may not be aware of. Some of these options are available for anyone with a disability. Read the rest of this entry »

For several years, my child has worn ankle foot orthotics,otherwise known as AFO’s. Although they clearly provide support in the areas she needs most, I’ve often wondered if they hinder other muscles; a debate I’ve had with her physiotherapist. After talking with several parents of children with cerebral palsy, I realized this is a common concern. Many parents have opted to go outside of the conventional way of thinking, and chose to use orthopedic shoes that provide a brace like support, plus do routine stretching exercises. Only you and your child’s therapist or doctor can decide what is suitable. Below are some of the companies suggested to me for orthopedic shoes or shoes that support AFO’s. Read the rest of this entry »

My daughter’s journey to independence has been a long and often difficult process. This year we stepped it up a notch with the pursuit of a camp that would also provide therapy for Callie. We decided to try Ability Camp (see previous post). Let me fast forward to the day of the trip….Wholly crap were we up early in the morning! It was 3:30am. We got up, washed, ate and loaded the van barely able to focus. Even with the ridiculously well laid out plan and help from family members, we were still running late.  Read the rest of this entry »

(Wheel-ist-ic) Adj: awareness or acceptance of actual fact, real existence, or truth with relation to inclusion, accessibility and/or persons with disabilities.

Let’s Be Wheelisitic is a blog designed to open communication, share and create change through parenting, awareness, inclusion and advocacy. Over the years people have encouraged me to use my voice and experiences with my daughter to help others with or without disabilities, or parents of children with disabilities. This blog is my way of doing just that. I hope you will find this site enjoyable, educational, helpful, and rewarding.
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“Clouds come floating into my life, no longer to carry rain or usher storm, but to add color to my sunset sky.” — Rabindranath Tagore

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