There have been many scenario’s in which I have said to much about my son’s disability and health conditions.
Some situations it has been to defend him, in which we have been told “he doesn’t look very handicapped.” One time after hearing those words from a grown man at our local Costco, Paul wanted to take him back outside. YES my Paul. lol….
Most times when we have needed to talk about our son’s special needs and medical condition’s it has truly been to explain to someone our life position.
I suppose in the very beginning when we were in the midst of living in the hospital, it became the daily topic of conversation. Naturally, it was in the forefront of all discussions and conversations with doctors, therapists, surgeons, family and friends. We did ALOT of talking regarding Braden’s disability. It was the most important thing in our lives.
As time went on and we adjusted to our “new” normal, discussing our business became more of a private matter. I actually clammed up through some years, sort of stopped talking about his disability. We went through a time where Braden honestly did not “look” disabled. He was small enough to be carried places, or placed in a wagon or stroller but he was old enough to run and play in a park with other kids. So it was confusing I’m sure for those looking at us from the outside wondering why our little boy was being carried all over the park.
I have had countless conversations with mothers, fathers and children who questioned Braden’s lack of mobility. I suppose if we had put him in a wheelchair right away people wouldn’t have stared as much. Pretty explanatory when a child is sitting in a wheelchair. But when you see a curious, happy, well spoken 4 year old who isn’t getting out of his stroller to play…people want to know why?!
Over the years, I began to realize that no one could truly understand what we were going through. In our defence, there are not many infants who survive accidents and injuries like the one Braden sustained. So we found ourselves often lonely and only wanting to be understood. Many times people would “lump” Braden into a category similar to Spina Bifida, or Cerebral Palsy. I guess we could agree that it was pretty much the same thing. However to Paul and I, Braden was recovering from a injury. We had always had hope he would walk again some day…luckily he did. Thank god he did recover remarkably and he walked with a cane for a few years.
Well then how did he end up in that Power wheelchair?…That’s another story, and one that effected our family tremendously.
For us, we didn’t like that some professionals were treating Braden like he had a “condition”, He was born with the capability to walk, he was walking at the time of my accident. I always felt I had to explain that~
I’m pretty sure that’s why I found myself talking to strangers about my son’s disability. So many people assuming he was born with a disability. That bothered me. I needed them to know who he is, what his story was. In the early years I was always explaining how he was injured. Then I grew tired of it, it no longer mattered what people thought.
I did try some “support” groups but those were filled with pissed off mom’s who hated their lives. I didn’t have any reason to hate my life, I was thankful. I almost lost my son, I was blessed.
Most of those mom’s had so much in common. They could all relate to one another, I didn’t fit in. So then I found myself once again lonely. I suppose maybe that’s why Paul and I are so close. Even during times of uncertainty we always had a connection because we were the only two who understood what each other was going through. He’s the only one I ever wanted during difficult times.
There has been times when I have been chastised for my Superman tattoo. There again, when someone makes a comment you feel you need to go into detail regarding the meaning behind that ink. Most times they look like an idiot and feel horrible, eventually I stopped explaining. I don’t care anymore…lol…I’m past it.
I suppose I have learned over the years when its beneficial to talk about his disability and when its not. My advice to you would be to determine what is it you are providing by opening up to someone. If you are supporting someone living with a similar situation then by all means share your story. For me however, if its someone just being nosey I find its way more satisfying walking away. I have been in so many waiting rooms where those nosey mom’s are watching you intently while their bratty child is destroying the place. Sometimes their kids will stare, and if they ask questions of course I will answer them. I’ve even gotten down to their level in play rooms and encouraged them to play with Braden. Its amazing how accepting children can be. Without explanations or curiosity most times kids will jump right in and ask him “do you want this toy?” “Do you want to try this one?”
Excepting, innocent and kind…..most times.
Don’t be naïve to think however sometimes the parents start asking questions, and although I would love nothing more than to sit with you and tell you all my life story, I don’t have the time. My energy was spent assisting my child so he could play with yours.
Bottom line is they don’t need to know, preserve your child’s privacy. Keep explanations short, the less you share the better you will feel. Trust me~
Today I have different views to share, today I am all about education. My voice has changed from sharing my personal stories to sharing my personal opinion. I love nothing more that educating people who do not understand differently-able. My dear friend, if you are reading this and are a parent of a child with special needs do not be afraid to educate. Share your knowledge with others. Teach those around you how they can encourage and help your child become capable in an environment not suited for their special needs. I mean by that, if your child is having a difficult time playing with others because its not a suitable spot…show them how to make it happen. Explain to the children and their parents that your child isn’t able to jump around in the ball pit. But if you pass him/her some balls they can throw them up high and you can catch them. Show them how they can incorporate your child. While you are doing this you are modelling for your own child. You are teaching them how to become an advocate for themselves. Children love to be helpers, when they do good they feel good. Share many thank you’s with them. Tell them because they helped include your child they have made them so happy. They had so much fun playing with them. Give credit where credit is due.
To all those who helped me provide Braden with a most excellent childhood Thank you~ To all those kids who stayed around to play, got down on the grass and made Braden laugh..Thank you~
We were busy parents, but we loved every minute of it!
Until next time, good night and god bless~