Sometimes it takes me a few days to decide whether to write about something that has struck me or at least has sent me for a small slight spin. It may be more that I struggle to find the words to express my feelings or possibly I need time to look at the topic objectively...either way, I figure it out and find a way to calm myself.
On Mothers Day, I had the priviledge of watching Braden's hockey game and the fortune of sitting with some of the most courageous, bravest stongest mothers I have ever met. Yes, they were all mothers of children with special needs...each mother with her own story, some happy and some not. There were single mom's, mom's with more than one child with a disability, mom's with their emotions on their sleeves and mom's who felt their child was the only one in the room... eyes only for their child. One mom I had the chance to speak with for quite some time started asking questions about situations we face with Braden particularily on weekends. She wanted to know what do we do if he wants to stay up late on weekends? Who puts him to bed? Do we wait up or do we make him go to bed when we do? I have a feeling that she was making her son go to bed early on weekends because she couldn't stay up too late, obviously like any mom she is tired.
I told her that either Paul or I have to stay up or at least we set an alarm on our phone, and at a decent hour we then tell him he needs to go to bed. I mean really, able bodied or not..teenagers do not need to be up until 4am on the weekends. I can't say it hasn't happened...it has, but those are the nights when his buddies sleep over and they have been taught how to throw him in bed themselves! They work it out, as long as I don't have to see it. We are very lucky to have such good guys in Braden's life, they are all comfortable enough with him and he is very articulate and expresses what he needs them to do. It does get easier as they get older, they sure do have some laughs trying to figure all those things out on their own.
This mom was pretty impressed to hear that Braden has buddies sleepover, friends who help him physically and who we can trust. I got the impression that they haven't experienced that yet. I however feel these experiences are of absolute importance, its a vital part of growing up.
From here the conversation turned to my most favorite, controversal word..."independance". I think everyone who reads this blog knows exactly how I feel and what my definition of that word is. This is were my thoughts during our conversation slightly changed. Ok, what I am about to say...is strictly my opinion and I do not claim it is the right one...however it is my belief and what I feel works with my family.
For the past I would say 4 years I have been fighting an internal battle with myself and an external battle with people in our community. These individuals feel they have all the answers and solutions to every young adult living in the community with special needs and have figured out the best way to make them "independant."
You are probably wondering where this fits into Sundays chat with the mom from hockey. Well, after we discussed teenage boys bedtimes..she asked me if Braden ever goes to respite homes? I almost threw up..no joke! I didn't know what to say to that! I didn't want to insult her decisions, or make her feel bad in any way..I am a big believer in mom's taking care of themselves first, they need to be strong and healthy inorder to take care of their families. Without any judgement, if that is what this mom needs to regain strength, get a break or even live a small part of her life without demands...then good for her! For me, its not an option...I have my ways that work for me and our family and that is not one of them.
I kindly explained that I was never interested in that, and neither was Braden also keep in mind I was able to stay home full time and care for him, besides I have the best parents in the world and they always stepped in when I felt overwhelmed or too tired to cope. DOn't forget my hubby, I will say he is..hands down, the best dad!
This mom, then continued to ask if Braden has ever attended this camp for special needs kids in the summer? Fully staffed to meet the needs of each child, doctors, nurses, social workers and physiotherapists all on board. Again, my answer being "No". She looked at me kinda sadly, I could tell she was questioning how much freedom Braden recieved. She then got every other mom in the room to tell me how great this camp was, all of their children go to school together in a segregated school system and they all know eachother..all being from Toronto. This wasn't the first time that I have come across this question, there have been many workers (CCAC) people sitting at my table telling me that Braden needs to be out at these camps, flying solo, testing the waters and learning "independance." You wonder why I get tired, the amount of shit that people try to tell you...why does everyone think they know what's best?
Seriously, not one time did a "professional" ever turn to Braden sitting at our kitchen table and just ask him "Braden do you want to go to camp?" NOPE!! Because if they did...they would have gotten the same answer I gave them, "No thanks"
It wasn't the fact that this mom was feeling bad for Braden, maybe thinking that he doesn't have any independance...it was more the fact that we have chosen a different lifestyle outside of the "Special needs box", and she didn't understand that. I did decide to tell her that I am not a big supporter of "ortho" schools or segregation, and that I belive all children need to be in their homeschools. I explained to her that we have fought very hard to have Braden attend his community school with his neighbours and friends, and managed to keep him out of school deamed "ortho" or lifeskills classes.
Braden will tell you that as he got older, it did become more difficult being the only one in a wheelchair sometimes. As the kids got older, they become more self absorbed and less interested in helping others. SO it did become challenging at times, but again he had to learn to use his voice, speak up and become loud inorder to be heard! Not a bad lesson in life, something he will certainly need to do as he becomes older. What doesn't kill him will only make him stronger!
After that discussion, is when I got a little funny...I felt like I was questioning my decisions while raising Braden, some of the choices that we made..were they right? Am I allowing him to become independant? How do we do this while still encouraging him to pursue a career, continue on with rehab, take care of himself physically, menatally and emotionally? How does he learn to balance all his appointments, remember to take in all his calories and keep track of input and output? SO many things that need to be regulated, things people will never understand. That is frustrating, his disability is often misunderstood....people always assume its just a physical disability. Even the darn professionals...those in the community who think they know whats right for him, they have no clue what it takes to keep him healthy, well adjusted and thriving.
Here is my analogy...again this is based on our experiences, people we have met over the years and some who are a part of our lives.
Lets look at this independance word, from what I have observed...the school enforces these children to look at independant living at around grade 11. They hook them up with people in the community, individuals living with disabilities and living on their own with assistance. The staff and teacher of special education really start working on these kids, giving them buisness cards of others in the community who can find them living arrangments to suit their needs. I fully agree with what our system can do for those in the community with disabilities and i think its wonderful that they have all these services..they have nursing staff, mobility aids, taxi services.etc...
Wonderful isn't it? But, the one thing that is missing in all this fabulous support is a career path...not once have I heard one of them say anything about courses offered at colleges, what is needed to go to university? This is what burns me...this is what gets me furious!
Let me explain what my observations have been...ok, I have met two types (generally speaking) of those living with disabilities. I am not sterotyping and certainly not trying to put a negative stain on anyones choices that they make in their lives. My words are only meant to tell my story, my feelings and how I see the world, while trying blindly through trial and error to raise, encourage and send off my child into this world in hopes of seeking success.
I see nothing wrong if any one decides to live on a disability pension, that is thier choice and if they qualify for it, then they deserve it! However, I will not allow my son to give in that easy. You see, the community really strives for these children to become "independant" and that is wonderful. They help these young adults move out on their own, they get their own apartment, services and a disability check to live off of. I have seen this too often, these kids are thrilled to get out on their own, it looks so easy and the income is their own..to do what they please its so inticing. Unfortunately they focus so much on getting them out into the community, living off of services that they don't strive for more...and no one gave them the guidance. I see this every Sunday, young adults who get dropped off at hockey and when asked what is going on with them...the answer is always "not much." "Its nice to get out today, I didn't do anything all week, there was nothing to do"...oh, but thank goodness they are "independant". I am not kidding when I say they really did try to persuade Braden into living at a community care access centre, I still see red when I think about it!
These kids leave home, without guidance or encouragement to work, save money, get their license or go to college only to say they are independantly living.
The other side that I have seen and observed are the young adults...who I have kinda interviewed while trying to decide for myself what decisions we have to make for Braden to attend college or university. I have also met and had the benefit of knowing two very successful individuals who are highly paid professionals one being a fraud officer in a bank downtown Toronto and the other an Orthopaedic Social Worker, who works in Toronto General Hospital. Both of these extrodinary people where integrated into regular school boards, lived at home until they were both working full time and could afford to buy a condo (on lakeshore, in Toronto) and both rely heavily on the support from their families and still remain close to them today. Another guy who happens to have a SPI lives at home with his parents, seperate quarters, has both paid help and family help and is a student at MacMaster University and is planning on becoming a teacher. Again, has said his upbring was very similair to Braden's and without the support of family he wouldn't be able to do things he wants to do today. Some of the most successful individuals living with disabilities have stayed close to home, relied on family and also on community services. I also want to state that "success" is not always what you think it is, everyone has their own definition and I understand that. Also, I have met people who have to live off of the system who are very hard working, and have found complete happiness in life. The system does not always fail, sometimes its the only option and thankfully the community is their for them.
I guess what I am trying to say...and not doing a good job at it, is that not everyone knows what is best for your child. I wish the system would change and stop lumping people who live with disabilities all under the same umbrella. What works for one individual, doesn't have to work for another. Over the years I have been told by one to many that some of my choices are not what's best for Braden and I think that is what hurts the most. Paul and I are doing the best we can, and Braden also has a voice and he dictates his own future we cannot go against his wishes and whatever he chooses to do, I will always support him...even if I don't agree with his choices.
Lets go back to the first comment, "Did Braden ever attend camp?" my answer being "no". But my next question would have been..."Has Alex ever played nicky nicky nine doors?, and gotten caught...with the neighbour wondering how the hell did the kid get up the steps to ring the doorbell? or has Alex, ever wheeled downtown to the chinese restaurant with his best friend to order eggrolls and then have one fall on the floor. Which then natually he had to run over to watch it splatter all over the floor and wall, followed by Braden and Spencer bailing as quick as possible out of the restaurant to prevent getting caught and ordered to clean the mess. Really...worried about independance?? I don't think so!
I will say one thing though, I will not leave one rock overturned he will have all the opportunities he deserves...that's if I don't throw all the rocks at those people first!!

To accomplish great things, we must not only act, but also dream; not only plan, but also believe.
- Anatole France