Channel 12 news

Thursday, September 27, 2018

Do you always wonder if your child has Cerebral Palsy from a birth Injury?

Most of you may know my birth story. It will forever be ingrained in my brain and it isn't a happy memory. I was ignored, I wasn't examined and I was sent home after only having a non stress test all to be rushed back by ambulance with a partial placental abruption. If only my doctor or the nurses listened to me just hours before my son could have been born healthy. Instead he was born blue, had to be resuscitated, intubated (twice due to the wrong tube size) and then brought to a different hospital with a level 3 NICU.

Here is some great information to help you understand how a birth injury can effect your life forever. I know first hand because Brendan has brain damage from loss of oxygen due to medical negligence. I fought and won and am able to give my son the life he deserves. It isn't an easy process but it is worth it. I am so glad that I went through the process because raising a child with special needs is extremely expensive.

Check out Birth Injury Lawyers Alliance of Canada.

They created this infographic to help us all better understand what could have gone wrong.

Wednesday, September 26, 2018

2 days and 2 months from now...

In 2 days and 2 months from today I will be a mother of a 16 year old. I am not sure how that happened. How has life gone by this quickly? How have I been a mother to a child with cerebral palsy for 16 years? How have I survived the stress, grief, appointments, therapies and all of his behaviors? How have I learned to cope and love and even come to enjoy his idiosyncrasies? Somehow I have. Somehow I have made it this far. Somehow the future is slightly less scary. Somehow the tears have become farther and fewer. Somehow I have reached 100% acceptance. Somehow I have become stronger and wiser. Somehow it will be 16 years or 5,840 days of living a life that I never imagined. He won't be getting his learners permit, he won't attend school dances and possibly not even prom (he doesn't like to), he won't have best friends like I remember but he will have the best life I can give him. I will never stop doing what is best for him.

16 seems like a turning point. I remember counting the days until I turned 16. I couldn't wait to start the new phase in my life. I couldn't wait to get my license and work a job and get a car. He experiences life completely different from what I remember and that often makes me sad. I have to accept that he still enjoys life. He doesn't know any different. I think the hardest part for me is that he won't be able to drive. He has been obsessed with cars since he was very young. He has watched countless videos of 16th birthday surprise vehicles. He has a love for chevrolet. He wants to get a job and always asks if he can go get a job. He always thinks he can do things that he just isn't capable of doing, yet! You never know.

I always keep the hope. I am going to take him to get a state ID so he can still have that piece of plastic similar to a license. He is actually already set up with a company that offers services to help him get a job the summer of being 16. He will work a few hours a week at different jobs over the next years to see what interests him. He is going to get a power wheel chair so that being in the community and working will be easier for him and he will be able to do things more independently.

He acts like a total teenager and hibernates in his room. He back talks when he doesn't want to do something. Thankfully he is still a mama's boy and loves me to death, even when he tries to act like he doesn't. A smirk appears on his face and I walk away smiling knowing that he still completely loves his mom. I have learned to love most of his quirks. I have learned how to better parent him over the years. I believe you have to parent each child differently. They all react differently. They all handle punishment differently. They all certainly behave differently. He needs calm. He needs me to talk through everything. He needs me to explain what I expect and what he did wrong and I need to speak calmly but firmly. We have come a very long way and he has learned to control most of his behaviors. Although he has never had an official autistic diagnosis he definitely has most of the characteristics. Knowing this and learning over the years what works best has helped me become a better and more patient mother. My job is to help him grow into a decent, loving and independent adult. It is a work in progress but I think I am doing an okay job. He has come a very long way over the last few years.

So I have 2 days and 2 months to perfect his epic birthday surprise. We aren't telling anyone so you have to wait and see. I just hope he likes it and isn't disappointed. He is very excited to turn 16 and I have been slowly letting him know that he may not be able to drive. I decided this year it was time to put some doubt in his mind. He thinks he can just go and get a license and drive. It isn't that simple. He is labeled as legally blind. He can not read or write. I explained the test you have to take to get your learners permit but then I read you can actually have someone read you the questions. We may take him to classes and let him take the test. If he fails he fails. We practiced with on line questions on the way to the abilities expo and he actually got a lot of the answers correct. I couldn't believe it. Maybe if there is a will there is a way. I just don't think it will be at age 16 or 17 but maybe one day he will prove us all wrong and actually drive.

We have gotten through all of his siblings birthday's for the year so the countdown is on! 16 here we come!

Sunday, September 23, 2018

Boston Abilities Expo Experience

This was our first visit to an abilities expo. I was oddly excited. We really enjoyed it and spent a solid 4 hours looking and trying out everything. Brendan was a little overwhelmed. He handled it great and tried out bikes, power chairs and the chill out chair.

School has been pushing for a power wheelchair for Brendan. I knew that I wanted him to have one when he turned 18 but I am realizing he may need one sooner. In his high school they start to go out into the work force. They actually go to work for part of the week as they age so this is something he will need before adulthood. I had my heart set on the Permobile standing power chair. I wanted to see all the other options before he trials one. I am a little torn. I loved the Rovi x3. The size, the features and the look of it. Brendan did really well driving them around. One gentleman even commented that he picked it up very quickly for a first time user. I was really proud of him today. He tried everything out without any attitude. Even though he was overwhelmed he didn't break down in any way. He was transferred to many chairs and a few bikes and was amazing through it all.

We also really love the E-Fix power add on drive. These wheels pop onto your manual chair and a joystick is added. Your manual chair becomes your power chair. We love this option because the chair is still lightweight. The base doesn't change and he can still power move his chair. He seemed to like it. You can pop on your regular wheels if you feel power isn't needed like in the house. I feel this is all he really needs to get around but the power chairs do offer some features that I feel he should have.

For instance, the power chairs have seats that raise up so he can be at eye level. It was honestly amazing to look and talk to him at my level. I am always leaning over or crouching down to talk to him. He must always feel beneath everyone. Just talking to him face to face felt amazing! I know standing is extremely beneficial and he doesn't stand enough. High school really slacks off putting him into the stander even though he is supposed to stand daily. This bothers me but I totally get it. It takes a lot of time to transfer him and stand him up to begin a lesson. If he had the Permobile power chair he could easily attach two positioners, push a button and stand up. Sounds simple. Sounds like there could be literally no excuse. He could stand up to reach for things. He could stand up to talk or to simply stretch out his legs if he felt the need. The only downfall is the front wheel drive. It has a wide turning radius and the base looks larger than the Rovi x3. It didn't look large in the expo but in the classroom he would definitely take up some real estate. It is actually a very difficult decision. I need to talk to some mom's or people that use these chairs to make a better decision. I am also going to ask to trial both power chairs. I think using it for a few weeks would help make our decision.

Brendan didn't really have a preference. If we asked what chair he liked he would always say he liked his manual chair the best. I found this baffling because he has always wanted a power chair. He has used his manual chair for almost 8 years now so maybe it is what he is used to. Part of me feels the power chairs are a little overkill for him. I realize we do push him a lot in his manual. He isn't 100% independent in it. He tires or is slow so for him to keep up with us we push him. It would be nice for him to just wheel along side of us and not exert any energy.

We had to have some fun too so we tried out a really cool power assist tandem bike, huka Orion. It was so much fun to wheel around with little effort. He got to sit right next to me. He had a huge smile the whole time. he really enjoyed this bike. However the price tag is large, $8000 large! He also tested out the Freedom Concepts Adventure bike. It is the next size up for him. The largest and we placed an order! He chose red this time. He has had two Freedom Concepts bikes over the last 12 years. I guess he wanted to switch it up. I can't wait for him to fit right on his new bike. His knees are literally hitting his handlebars on his old bike. He has been using it so much so it was a much needed purchase.

We also checked out the Freedom Concepts Chill Out Chair. I recently came across the name and have been wanting to check it out in person. I have been wanting to get him out of his wheelchair off and on so he isn't always sitting in that 90 degree angle. It is super comfortable and has an ottoman. He actually has some growth in the larger chair which is great. He seemed to really like it. It has a tray that can slide over him so he can still use his computer or have a snack. He can stretch out his legs and we can even use e-stim while he sits. It has great positioning. He wanted black so guess what, we ordered one. I can finally stop complaining about him always being in his chair.

Speaking of that I need to get off this computer and go stretch and work him out!