Monday, July 6, 2015

Rock and Roll

What is this you might ask?  This is the aftermath of one of many seizures that happen daily by a number of the kids.  If we're lucky the flipping of chairs and tossing of food doesn't occur more than twice a day  and if we're really REALLY lucky there is no blood from scrapes, gashes or deep cuts.

I dont mention much of the crappy parts of our day but this is a reality.  Four of the kids have intractable  seizures that being seizures that are resistant to any medications.  Every day is a crap shoot as to whether I will need to pick one of them up from their program to get glued, stitched, or whether I will be meeting them at the hospital because the injuries are significant to warrant X-rays or  CT scan.  
When we are out together I am always on alert as to who might go down and how to position everyone to prevent injury when the inevitable happens.  One I have holding onto one of the others wheelchairs with her left hand as when she goes down that's the direction she's headed.  Her sister I have just recently resorted to using an adapted stroller due to her penchant for stimulating herself to seize by the refraction of light.  Unfortunately their older sister is not so predictable with her seizures.  With her it is a matter of hoping that if one starts I am able to catch her before concrete or floor meet her head.

We are loads of fun to go out with.

Wednesday, July 1, 2015

update (sort of)

There is so much I have to say but haven't found the time or just the right words to say it all.

The children are all fine minus the average bumps, bruises, cuts and scrapes that occur when modern medicine fails in treating your kids' intractable seizures etc.

One of the newly graduated is gainfully employed at her dream job for the summer.  She is feeling excited, overwhelmed but grown and responsible.  The other continues her quest to find a job but is looking in the area where short term is ok as her plan is to marry and move out within six months or so (don't get me started).

The school kids are happy summer is here though it would be nice if the weather would cooperate a bit.  Day camps will soon start which they are looking forward to.  When you don't have imaginative play skills or any real play skills in general the days can be very long and boring.  We spend a lot of time doing as much outdoor activity as we can and when the weather is not so great we shop, bake and do the things that it takes to keep a house running.

The big kids still have their day programs to go to.  It takes a lot of encouragement to get the day programs organizing different schedules that have them outdoors and making use of the city's seasonal  activities.  Though the majority of the big kids have one to one staffing it remains difficult to develop stimulating, meaningful somewhat productive programs.  If I could only win the lottery I would create a reality for them that only exists in my dreams

There is news and there is no news in the adoption front.  This is what I am trying to find the time to write about.  I have mentioned it before in previous posts where I think my excitement might have been palpable.  Unfortunately as I have said many times before adoption is a very difficult way to grow a family.  Throw in other factors such as my family on paper, government custody of a special child, living in a different region of the province from where the child resides and you have barriers that sometimes seem insurmountable.

I will find the time as I believe my experiences might be helpful for others who come up against similar circumstances.

I will ask as I leave you with this update of sorts....keep the children in foster care in your thoughts and prayers.  Pray that permanence is found for them whether it be back with their families of origin, extended family or adoption.  Pray that those in control of their lives...foster parents, case workers, case managers, lawyers if the kids have them and judges all work in the child's best interests and most importantly share a similar vision as to what the best interests are.  If returning to family is not possible pray that those in control see the children as adoptable and that they dedicate themselves to finding their family.

Happy Canada Day to my fellow Canadians!  We live in a spectacular country both in geography, climate and freedoms that allow us to be all that we can be.

Sunday, June 28, 2015

"When I heard we were going swimming today it filled my heart with joy!" said the 8 yr old

Tuesday, June 16, 2015


Me " so you know when you went and played and worked with the doctor at the hospital last month?"
8yr old "yes"

Me "well do you want to know what she said? She said you were so smart, so charming and a wonderful little girl."

8yr old "I all ready knew that"

Me " well she also said something else. She said that you have autism"

8 yr old "WHAT?!" she cups her cheeks grinning "I have autism?! That's crazy! I have too many disabilities. Oh well. I guess I will just have to live with it!" and off she skips.

I on the other hand with her sweetness and courage in all that she faces have developed a big case of leaky eye. I always knew she had to be on the spectrum from the time she was nine months old. That's not what has me leaking. She is just the best kid ever. She takes on whatever life hands her and moves on. Sure she has her moments and puts the school through their paces but if ever there were to be a picture of strength, determination, bravery and perseverance in the dictionary it would be her beautiful smiling face you would see.

I will say that knowing something and wanting it labelled in order to access the best resources and for folks to have a reference in how to approach her on top of my instructions and being given the label trigger conflicting emotions. On the one hand someone else saw what I saw and who has all sorts of big capital letters before and after their name. On the other hand it is one more diagnosis. In no way does it change anything about her in fact it makes me love her more and want to continue to rise to the occasion for her but no one wants their child to have more hurdles in life.

The reality I guess as I said before is she is still the same girl that she was before eleven o'clock this morning. Instead of letters behind her name for now she has a lot of big words. Impressive in their own right as she dispels any preconceived notions about what a kid who carries them should be like.

And we carry on.

Thursday, June 11, 2015

making friends where ever I go these days

A couple in their seventies drove up to me in the bus in a parking lot, rolled down their window and shouted profanities at me.  Apparently they were unimpressed with where I stopped the bus while the teen was in getting our lunch.

It seems they thought that the hundred and fifty year old driver did not have enough space to back out of his parking spot.  From where I was sitting they were out of the parking spot on the opposite side of where they were parked yelling at me so it seems they did get out.   In my defence they had another whole space between me and them when I parked.

In case you are wondering I am an asshole and a few other things.  There are a few folks in social services right now that share the same sentiment so she's in powerful company.

My response was to smile and say "thank you.  Have a nice day" which was met with more profanity. I poked the bear just a little and asked if she kissed her grandchildren with that mouth.  Her witty reply was she has no grandchildren.....

Nuff said

Things I find worth commenting on so far today...

-toast does not become toast unless the toaster is pushed down

-every time I see pictures of Caitlyn Jenner I have to do a double take to see if its Courtney Cox (you know, Monica from Friends?)

-the big man's bus is being driven by Santa Claus today. He did not say he was Santa and I did not ask if he was Santa and he wasn't wearing his red work uniform but I know it was him.

-when a dog is determined to run up her vet bill in an attempt to see if I like her enough to pay it, a doggie onesie nor cone of shame (that she has no problem getting out of) will prevent her from nonstop licking of her $700 wound

Monday, June 8, 2015

An excerpt from an email sent to the grade 12's last night

"Our Lord and Saviour Jesus Christ knows that most of you desperately need to know how to use commas. I've attached the comma rules sheet. Please review it. I'm begging you."