February 11, 2014

An Open Letter to the Government of PEI, and Health PEI.

What has happened to our moral compass here in PEI, when our elected/appointed government officials ignore the needs of Islanders in favour of keeping the status quo? Not rocking the boat…not wanting to lose their appointed job by sticking their neck out to make a real change for good. It's a political mess.

Currently the Queen Elizabeth Hospital has very few resources in the Early Child Physical Medicine Department. The special needs children that rely on these services require more physiotherapy and occupational therapy than the province of PEI has been providing, for decades now.

Jeff and I have decided, as a family, to create awareness of this issue not for our own gain but for the hundreds of children who live in PEI who have Cerebral Palsy or struggle with physical challenges or developmental delays. By creating HelpPEI.com, we have made a platform to increase awareness. We have read each and every letter sent to government. Hundreds of emails have been sent in the last 48 hours and most have fallen on deaf ears. Why is no one reaching out to those families to hear their story? Well in fact, Olive Crane has been the only one who attempted to reach out and want to listen, to find out what's really happening. Every one else wants the problem to go away. To not invest any time or effort to listen to the concerns of Island families. We are writing the script for someone to be the hero. Anyone in government can audition for that role. It's up for grabs. Do the right thing and help these children who have a serious gap in healthcare. Become the hero. The only role you play by doing nothing is the villain. Some of you won't read past this point…you are definitely meant to star as the villain. That's your role.

Let me give you a little background that goes beyond an interview on TV. As a parent your whole life changes. Most of you can relate to this. Your children become the most important part of your life. You would do anything to ensure they live a healthy life and experience all life has to offer. When you are first told your child has complex needs, your entire life turns upside down. The smallest daily patterns we all take for granted become huge challenges. As your child grows and still hasn't learned to walk, getting to the car becomes a struggle. Simple daily activities become harder. You worry as a mom that your child will be too big to carry and when you need to think about adding a wheelchair ramp to your house. You spend a ridiculous amount of time researching your child's diagnosis. You start to learn more about your child's condition than the doctors who see them.

You look for help everywhere in the world and when you stumble on an answer you go into debt to move in that direction to get your child the help they need. (In our case that was Anat Baniel Method (ABM), where I am presently training to become a Certified Practitioner. )

Most of you want the best for your kids and perhaps that means having them play hockey and maybe even be good at it, but for a parent of a special needs child your biggest desire is that they can experience movement the way you do. That they can walk and eventually run like you remember running as a child with all the excitement and energy and happiness that a simple thing like running can bring.

As I learned about Cerebral Palsy what gave me hope that my daughter would someday experience running, was our brains have a tremendous ability to create new connections (neuroplasticity). The MRI of our daughter Vaeda's brain shows that she has scar tissue on the right hemisphere. I believe, happened during a traumatic labour at the QEH, as her head was jammed into my pelvic bone and I was delayed getting a C-section. This brain injury means the movement on her left side is affected. Neural connections to use her left arm, hand and leg haven't been well formed during early development. Movement with attention creates these connections elsewhere in the brain so that the loss of functioning returns. In fact children with Cerebral Palsy and other developmental delays who get the help they need, have "extra"ordinary brains as they have mapped functioning to new areas of their brains to overcome their "dis-ability."

This is why it's so crucial that these children be exposed regularly to movement. Movement with physiotherapy, occupational therapy, ABM and osteopathy. For these connections to happen frequency is important. Having 1 appointment every month is not enough. We have experienced what one appointment of physiotherapy and OT a month will do. Almost nothing. We went months without any OT at all when Health PEI delayed replacing the OT who went on parental leave. Your children don't get good at hockey playing once every 4-8 weeks. They get good at hockey playing 2-3 times a week, that's how you excel. Adults can get physio to treat an injury 2-3 times a week, but kids who don't know how to walk yet can't get that same advantage here presently.

Our daughter did not begin to progress until Jeff started pushing back and demanding that she get more regular appointments. In just 3 months of getting 3-4 appointments a month, and me doing what I know of ABM with her, our daughter has gone from scooting on her bum to move around, to walking by holding someone's hand! This is a tremendous milestone but so are some of the smallest changes and improvements we witness with her daily. When you stop taking things for granted, watching someone using their brain and learning is a truly miraculous thing.

We have first hand experience with how important movement is to help a child overcome immobility. We are aware that most Islanders don't push back when they are told they can only have 1 appointment a month. God love Islanders , we put up with everything. Jeff and I "put up" as well for months. Complaining to anyone who would listen. But complaining and not taking action eventually weakens you. We put up with a level of service that is not acceptable anywhere else in this country. Jeff worked hard meeting with Doug Currie, the Minister of Health, urging him to listen and make improvements. He met with a number of managers in the Early Childhood Physical Medicine Department and Directors at the QEH. During some meetings the reaction from them was to fight back tears. They couldn't believe how bad it was. They wouldn't want that level of service for their own children.

We have made progress finally, as historically this increase to the budget to hire a coordinator and make the existing part time physiotherapist a full time position is the first increase in this department since the late 1980s. Thank you. That adds to the two full timers, a physiotherapist and an occupational therapist on staff. Elected government after government has pushed aside these children in favour of adult stroke rehabilitation, cancer treatment, any segment who yells the loudest - the list goes on. It's easy to say no when no one is standing up for the rights for this segment of our population. The problem is this, the ones who want to stand up are already weakened and struggling with challenges most families don't have to face. If these children don't get the help they need at a young age, they will become more of a strain on the system as they age. A brain that doesn't experience movement by sitting in a wheelchair all day can't be expected to improve. They will go downhill and their ability to move will decrease.

Jeff and I were divided for months as to how to make the situation better. He felt that this was the best route. To make changes to the healthcare here locally so that these kids would get a better start in life. I had no faith in government and our healthcare leaders here. I went in my own direction and committed to learning a better way by training to become an Anat Baniel Method Practitioner. That is the light at the end of the tunnel for me. So in fact, I have won the struggle already. Through cutting edge techniques using neuroplasticity, I will be able to help my daughter and other children, and those not even born yet, who experience brain injuries and developmental delays. So it doesn't matter if there are no heros around in PEI. I 'm surrounded by them at home and at my training. Jeff and I are moving in the direction to help these children and make a difference. That has become so important for us that we have changed our entire lives around in the most positive way to make that goal happen.

Jeff and I came to the conclusion that everything we did helped our daughter. If movement was part of it, she improved. So that is why we find it important to do everything we can to help Island families. We understand what they are going through. We understand how tough it can be when no one around seems to have the right priorities and a moral compass anymore. We are going to help those families, one way or another. You can join us on the HelpPEI Facebook group or ignore us but we're not stopping until things change, and we can watch more kids experience a life that kids deserve to live… and maybe watch them do a little running too.

Most Sincerely,

Lorrie Jollimore


Visit shizamo or the HelpPEI Facebook group for developments since this has been published. You can send your email of support at HelpPEI.com