Inspiration and laughter

So since I've started this blog I've been looking at all kinds of articles and blogs that other parents of kids with special needs have written.  None so far related to Angelman syndrome but that doesn't matter.  I think parents of kids with special needs (or special powers) are a unique family that are weirdly related by their experiences.  What strikes me is the positive spin most of the blogs have had.  Yes, there are negative moments but when you child has such difficulties it sort of comes with the territory...

Emma & Mya

Anyway, my point is that a lot of people ask me how I can have such a positive outlook.  When I talk about Ronnie, I feel proud and fiercely protective.  When I talk about Emma, I feel proud and fiercely protective.  Exactly the same. How can I be negative?  I have two incredibly wonderful daughters who are brave, intelligent and funny. They may drive me crazy, but they also make me laugh till I pee...

I have come to realize that there are two kinds of people: those that stagnate and those that move forward.  If you stagnate you will never be happy but always wonder why you are not.  If you can accept your child's disability and incorporate it into your daily life, then you are moving forward - no one gets left behind.  If no one gets left behind, how can you be negative?

'til next time.

Woo Hoo - we finally have a ramp!!

When you get excited about the installation of wheelchair ramp, you realize just how much your life has changed from what you expected it to be.

Seven years ago when Ronnie was first diagnosed, every piece of equipment her PT would bring out would make me cry.  The idea of seeing my baby in something that looked like a machine designed to torture my baby was just heartbreaking. 

We've now just installed a wheelchair ramp and wow, will it make life a lot easier.  Added bonus: Ronnie thinks it is absolutely hysterical.  Everyone can now bring her up the ramp not just Brian.  Cost of pretty penny but definitely worth it.

'til next time.

Frustration (mine) and incompetence (not mine)

So, we've been on a waiting list for what seems forever to have certain rooms in our house adapted for Veronica.  Primarily, the bathroom room needs to be redone to accommodate her.  Kid is 9 years old and she still has a small bath seat; the only person who can actually give her a bath is Brian because I certainly don't have the physical strength needed to manhandle her in and out... Ironically, the scale of the project has reduced significantly from its beginnings as Veronica's abilities have increase.  That's a good thing.  

However we've been actively disagreeing with the occupational therapist and architectural drawer (I'm not sure what she is but she ain't no architect) because we don't agree with their plans.  Unrealistic and ridiculously expensive.  Anyway, we've just found out that contrary to what we were informed the city's by-laws regarding property distance do not apply to access ramps.  This is something they should have known, yes?  In fact, we were told in no uncertain terms that we couldn't even apply for a derogation... Apparently they were wrong, again.  It is amazing to me that these so-called professionals whom you are trusting to do their jobs just can't be bothered.   And when you call them on it, the mistakes are barely acknowledged.

Anyway we've decided to install the handicapped ramp ourselves and have now taken over that aspect of the plan.  It will be really interesting to see what kind of work the contractor does.  Hopefully it is half decent as he is the one who will likely handle the rest of the work... Scary but I hope it will work out.

I just wish everyone would take their responsibility seriously.

'Til next time...

Transportation adventures

So yesterday, Emma and two of her friends boarded the wrong commuter train leaving school and ended up over the bridge on the South Shore of Montreal.  Thankfully her grandparents live about 10 minutes away and even more miraculous... they were home.  They picked up the girls and drove them to our house (took just over 1 hours) which sort of makes them the heroes of the story.

Despite saying she was not scared (okay only a little bit at first), I can't help remembering a time when I missed my bus stop coming home from Christmas Shopping.  I was probably about the same age as Emma but since cell phones didn't exist in those days (shocking as that may seem), there was no way to get in touch with my mum to let her know I was lost.  The bus driver took pity on me and drove me home... Seriously, next thing my mum knew there was this giant sized city-bus pulling up in front of our house and me getting off it.

I'm glad everything worked out for the girls and I'm pretty sure they will be paying more attention next time they have to take a different train home from school, but the whole situation made us wonder about other parents and their reactions.  None of the parents of the other two girls called us to say thank you for arranging their return, not even to acknowledge that the girls had an adventure.  Now, I don't need abject gratitude but a thanks from the other parents would have been nice.  Once set of parents was out for dinner and NOT going to pick up their daughter (in fact she walked home from our house; again, my parent saw her by the side of the road and drove her home), and they kid stayed with us for a good 30-45 minutes before he dad showed up to pick her up.... Is it just me?  These girls are 12 not 21... they are still kids who got scared and just want to go home... people are weird...

Til next time...

New Beginnings

So, we've survived our first week back to school.  Emma is in grade 7 and Ronnie is up a level from last year because she did so well. 

One of the things I really enjoyed about the CASS conference was just talking with other parents.  I also found out some information about the IEP so we've already spoken to her teacher about some of the specific goals we want them to work with her this year.  We'll see how that goes.


High school - its hard to believe that the little girl I carried in my arms is now in high school.  I wish her nothing but joy and happiness.  This is a time when kids get to explore everything and anything and discover who and what they are.  They re-define their beliefs, their friends and even their parents...High school doesn't have to be miserable so I hope for her that it isn't.  Started off okay so hopefully it stays the course.

Til next time...