I love them. I love every hair on each of their freshly shampooed heads. Nobody could have a stronger love or love them more fiercely than I do. That being said....I am LOVING that it is Monday and all the buses showed up.....

Just testing

Being the parent of dependent kids physical strength is important. I'm what I call a "big strong girl from farm". I am not from the farm though big would be a good adjective to describe me. That being said I like to test myself every once in a while to see exactly how 'functionally' strong I am meaning how much weight can I actually lift, carry and or transfer. 

The little warrior is quadriplegic so has no weight bearing skills and will require lifelong full support for all of his positioning. I was lucky with Ailish as she had reached her full height at age nine or maybe earlier so her final height and weight at her passing was that of a kindergartener. Though small for his age there is no reason to predict that the little warrior will not continue to grow to be the size of an adult even if it is a small one. 

Luckily for me I have someone the perfect size to assess my skills!  I'm really hopeful the boy does not grow to be bigger than her. Certainly there are lifts etc and we will make use of whatever makes life easier however for time and ease and even quality of life for him lifting and moving is so much easier without all the rigamrol of equipment. It goes without saying however that safety for both him and myself is paramount and we will adapt as necessary. 

That all being said you might be pleased to know I am still able to lift and carry safely 95 lbs!  You might also be amused that my 18 year old still fits in a crib....

Siblings

If it is within your control and something you desire the best gift you can give your child with special needs is a sibling. 

Siblings whether they share disabilities or not offer each other a relationship different than what the adults in their lives can offer. 

There has been an early Christmas Miracle around here!

One of the children based on cultural restrictions on adoption has had to remain under foster care status for as long as he has been home with us  When I brought him home from hospital after seven months of advocating to do so it was with the goal of adoption.  The social worker was totally on board with the plan.  The worker then began whatever proceedings to make it all happen and soon learns that "they don't do adoptions".  Oh.  She was told to work towards private guardianship.  Ok.  Not as good but still permanent.  Lets go.  That's where things stopped.  Fast forward through a few social workers some who advocate better than others, policy changes, management changes and you get to where we are today.....

ONE OF THE BEST DAYS EVER!!!!!

Unexpectedly I get a call from social services telling me that I have been granted permission for private guardianship!  I say unexpected because my quest has been ongoing but nothing active that I could say was occurring that I was aware of.

There you have it!  Miracles do happen!

All the logistics still have to be taken care of but we should be in court or at least someone will be in court where the little darling will be legally ours.  He had our hearts the moment we met him but guardianship as I'm sure you can imagine has been the important missing piece of the puzzle.

I won't identify who it is exactly I am referring to until the papers are in my hot little hand.

What's the saying?  Good things happen to those who wait?  I'm going to go out on a limb and say this wait was pushing it to the limit!  (Followed closely behind the wait for a new baby which I continue to wait impatiently for ;)).

Could I be so greedy as to have TWO Christmas Miracles this year?

Minding my own business paying for my stuff at the Bulk Barn, look at the screen and see that I have been "awarded" the seniors discount! Without my consent! And without being a senior! I am now currently in jail wishing they had a seniors discount for bail....

heroism

 In the disabled community it is common for  children who have been raised with no legal parent i.e. in foster care, group homes etc who have government workers being the deciders, grow to be adults with no one looking after the best interests.  There is the public guardian, the residential workers and day program staff that are involved but often times there is no one really invested in the person.  Quality of life depends on emotional attachments.  You can be clothed "appropriately", fed a balanced diet and have your healthcare tended to but if no one really cares that you are alive and present in their life then where is the joy and happiness that makes life worth living?

On one of my kid's bus is a young woman whom I have known since she was a feisty toddler. She shares the syndrome Cri du Chat as one of my daughters.  She was not an easy child by any stretch of the imagination.  Every negative behavioural characteristic the text books attributed to the chromosome deletion she demonstrated.  I have come into contact with her often over the years and I know she has mellowed.  Perhaps it was maturity or perhaps medication.  In the end her family found it all too much and secured alternate care for her in her early school years.  Unfortunately I believe it to be in group homes and that is where I know she resides today.

It is possible in the group home setting where E has been living she has staff that enjoy her and do more than meet her physical needs.  I really hope this is the case.  What has brought me to this post however is how long she is spending on the bus every day.  My observations have her on at least four hours each day, two in the morning, two in the afternoon.  It is likely she doesn't mind the ride, I don't know but for me that is not the point.  It just brings home to me the fact that for some folks with cognitive disabilities no one is looking out for them....I mean really looking out for them.  Does anybody care how long she is travelling the city no matter what the weather or road conditions?  Has anyone calculated the amount of time she is on the bus?

I know many would say it's not my business and maybe it's not.  Could be everyone is fully aware of E's bus times and have decided it is not a concern.  I think maybe this situation with E is just illustrating to me the fact of how so many in the disabled community really are on their own.  Surrounded by people but alone.

If you ever give pause to think of those who live heroic lives you need to remember the children and adults with cognitive disabilities who are dependent on others to meet their needs. The ones without family.  Not everyone in the caregiving profession is created equal.  Not everyone is in it for the right reason.

For the individual requiring assistance to live, make the best of things and maybe even thrive against all odds is an act of heroism every single day.

In a weak moment we got another cat. When I say moment I mean I thought about it for a long while then made the move.

There have been days when I wondered if I had made a mistake. Three cats really does put you on the path to a reputation of crazy cat lady.

If you ask the second cat she will tell you three cats are too many. She hissed, spit, jumped and pouted for a week. Though she has forgiven cat number three for existing she has not forgiven the one who loved her best before he came along. The teenager continues to get growled at when she picks her beloved up. 

Three cats use a lot of litter. They lose a lot of hair. 

There will be No. More. Cats. 

No really. 

But I guess number three was worth it. 

When you are sound sensitive and your recipe requires the mixer to be on medium to high and your dough is lumpy you might need to be a contortionist

"Wow you're all poppied out" says the teen

I thought she just noticed I had once again had to buy another poppy as the 100th one had fallen off like its predecessors

"Another one fell off" I said

"You're wearing two" she says gesturing to both poppies on my jacket. 

Turns out I couldn't see the original poppy as my chins were in the way. 

My flubber, the veterans gain.

Grateful for the senior members of my family who served their country and thankfully did not lose their lives doing so. 

Lest we forget those that did. 

11-year-old girl shames ‘One Million Moms’ for attack on her gay dads: ‘This is none of your business’

11-year-old girl shames ‘One Million Moms’ for attack on her gay dads: ‘This is none of your business’

Mic drop "it's none of their business.


For the love of God people get your heads out of other people's families.

Apply to foster.  Apply to adopt.  If you cannot do either of these things then support those that do.  This whole world is a village.  We need to take care of each other and we all need to be raising the children.  Kids should not be held hostage in foster care or orphanages.

Put down your red Starbucks cup and contribute in a positive way to the community you live in.

The weather has continued to be beautiful. It only now has turned more seasonal with small amounts of snow making an appearance. It has been wonderful to be spending more time outside. 

In September we once again participated in a walk and wheel challenge in support of our provincial association for people with cerebral palsy. Always a good time. There's catching up with friends, a barbecue, prizes and all for a great cause. I even loved the colour of shirts this year as it matched the whole fall theme ;). Info love it when things match...

Master baker. She now has her own new oven mitts so she feels safer in putting in and taking out her delectables. 

She loves to work in the kitchen. Being the birth order she is in my parenting journey and with her being so capable I am much more relaxed with her in this area. 

Maybe if I teach her well I will be guaranteed to be fed in my golden years 

Points of interest

Points of interest

A pizza slice bought at a gas station will taste like pizza bought at a gas station.

Three cats shed A. LOT

If you organize yourself including taking yourself out of your pyjamas and putting on bra and lashes
for a meeting at your home said meeting will be cancelled.

Cancelled meetings are the best kind of meeting to have except it will have to be rescheduled thus making you repeat the process.

When your grown, tall nonverbal children who are developmentally toddlers misbehave on their buses or in their programs it is expected that you will "talk to them" and fix the problem.

Often times the good intentions to clean storage closets and cupboard are just that....good intentions.

There are people whom for years you will believe to be your close friend will use you for what they can get from you and then for reasons only known to them will attempt to destroy your credibility and reputation within a shared community.

I am very naive.

Rememberance Day and decorating for Christmas are two unrelated things. Not decorating before
November 11 does not make a person more respectful of those who have lost or dedicated their lives to serve their country than those who do decorate.

Grief is a way of life and exists every single day when your child dies.

Grief is probably the same for those who lose anyone integral in their lives.

Grief is stupid.

Kids dying is stupid.

Obviously the skill of posting from my phone is not quite fully established in my repertoire!  An entire blog post with pictures never appeared.  I wonder where it went....

Autumn 2015

I have just been informed how to post off my phone!  This could be life changing!

We have been having a spectacular autumn weather wise.  We have had hints of flurries the odd day here and there but for the most part we are enjoying close to summer temperatures.  I still have flowers blooming in my front garden which is amazing on a number of levels!  Each weekend I think it might be last of the warm weather so we best make use of it outside. It is so much harder in the winter as I'm sure you can imagine to keep the kids active or at least my kids. 

This weekend will be dedicated to one of the kids engagement party and the errands created by that. One of the jobs will be to pick up the cake and deliver it to the venue the day before. This is anxiety provoking!  It is only two tiered but you know when the bakery doesn't deliver tiered cakes due to their not wanting to assume responsibility if something goes wrong you know it might be tricky.   I'm looking forward to Friday's errand of picking the candy for the candy bar. Who doesn't like that?!  I will need to deliver right after purchase however to ensure there is some left for the guests!  I'm not worried about the kids getting into it but myself. Nothing goes down better than jelly tots or sour dinosaurs!

I sure hope that your autumn is playing out as well as ours!

Here are some of our pics from our time at the park last weekend.

I realize I have been absent from the blog.

Life has been moving forward full steam ahead.  We have celebrated monumental birthdays, started school, recently enjoyed Thanksgiving and I am fully engrossed in planning an engagement party for one of my daughters.  I know right?!

When I began my parenting journey decades ago with the plans I had, never in my wildest imagination did I foresee any of my children marrying.  It never occurred to me that any would develop, change, overcome the obstacles they were born with to grasp hold of the milestones that the majority of society takes for granted.  Not only is this the case for one of my children but most likely will be the same for two more.  Crazy isn't it?!

It's funny when we envision our lives playing out one way how life steps in and shows you how it really will be.  I never thought I would have children that spoke and was accepting of that.  When some of my children did acquire speech I know that I was provided with a gift I didn't know I wanted.  I would still be fine if I did not hear words uttered from their sweet lips however I know my life is so much more enriched that I can.

This takes nothing away from my children who speak to me in nonverbal ways.  I receive their messages loud and clear as I believe they do mine.

This is my favourite time of year.  I love all the holidays and the special events of each season.  I hope that all of you feel the kindness of family, friends and strangers alike over the coming months.

I promise I will try and do better with this blog....

Because she is beautiful.  Because she is missed.  Because each day is a struggle without her.  Because she is loved beyond measure.

Ailish Angelia Wheatly

It is four years, five months, seven days since she left.

Ailish Angelia Wheatley

I thought knowing that there would be a day when she left that I could prepare myself.  Eleven years of preparation and nope.  Still is devastating.  Her loss weakens me at the knees and causes my body to ache more than what my age suggests is appropriate.

I would do it again.  I would say yes to being her mother all over if given the choice.

Ailish Angelia Wheatley

To have been her mother for eleven glorious years, for her siblings to have loved her, for the community to have known and learned from her,  all gifts.  Priceless gifts.

A lifetime has passed but her final gift has been the memory my body has of how the weight of her felt in my arms.  The tickle of her long thick curly hair on my skin as I held her.  The texture of her skin.  Though the memories are precious they also cause pain.  I was told often that as the process of grief moves on and time passes that the tears that come with losing a child are replaced with the smiles of memories of happy times.

I call bullshit.

Still hurts.  Still is nauseatingly painful.  There are always smiles and laughter that come with thoughts of good times even in the early days but in no way do they replace the agony that is the reality that my child is gone.

Ailish Angelia Wheatley

Never ever EVER forgotten.  Not for a day.  Not for a second

All night I dreamt of donuts.  All night.  Woke up to tend to one of the kids, went back to sleep to enter into a different dream about donuts.  I love donuts and all however it is safe to say I will not need to see one for a very long time.

By a long time of course I mean like a week or something....

Teen who has dedicatedly been searching for employment
"I really just want a job"

8yr old
"Well what you could do instead is get really rich,  get married,  get pregnant and stay at home looking after your children."

Teen
" how do I go about getting rich?"

8yr old
" the tooth fairy!"

It would appear there are some flaws in the child's logic however the teen being rich would potentially solve any worries I might have in my golden years....

8 yr old

"Today At camp I was climbing on a pole and I had such a good grip on it. I was like a pole dancer! You know how some pole dancers can go upside down?! I was almost like that!"

What the heck is going on at day camp this week?!

From the time she came home from the hospital 22 years ago she has been his baby.  She knows it too.

 A sampling of the phone calls I receive daily not counting the emergent or program planning calls from schools and day programs

-Samantha fell down and scraped her knee
-you need to tell Amanda (functions at 2) to stop taking her seatbelt off
-A is having a seizure on the bus (aaaaaand?)
- C is pushing peers
- C wet/or other her pants twice
- P fell down. She is fine
- H fell down and scraped her knee
- HBB quit breathing but he's fine....(ummm what?)
- S fell down and scraped her knee
- S dirtied her diaper 2x
- S is having a seizure on the bus
- H is having a seizure on the bus
- We noted bruising on C's lower legs today (you mean the scarring from bug bites in the SPRING when you guys took her to the park without bugspray? Those same marks she has had since the SPRING?)
- YOU need to have a conversation with A (functions at 2) about not taking her seatbelt off on the handibus
-YOU need to talk to A and tell her not to lay down on the handibus
- YOU need to talk to C (functions 2-3) to not get up before the handibus stops at your house
- etc
- etc
- etc

All are worth noting but as I fielded my third one a few weeks ago I began to find them oddly amusing....not the falling, seizures, scraped knees etc but just the types of conversations that make up my day.

Words from the 8 year old.....

"Move your big fat butt. Oh, I'm talking to the dog Mum not you"

"Mum you only have half an eyebrow!" (hoping it's her vision impairment playing a role here but I guess I'll find out when I look in the mirror"

"I think I can see your boob crack"

Strangest thing I heard today from a young mother trying to have her kids avoid intentionally stepping in puddles
"Remember what I said....if you step in the puddles your legs won't work"
I get she doesn't want the kids jumping in muddy puddles while out and about. I don't know what plans they had for the remainder of the day that perhaps required that they not be splattered in muddy water.
What I do know is life is full of puddles. Some puddles you will accidentally step in or some fall in.
Other puddles are for intentionally, full force, with both feet jumping in. You will never be able to jump if you are afraid your legs won't work.
We need to encourage our children to plunge into life using balance of risk assessment and courage.
We need to educate our kids that life is not always going to be fun but when the opportunity allows we must grab onto it.
Life is short and fleeting. Tomorrow is never promised.
Teach your children to live fully and with intention

Our sign the neighbours are having a barbecue.

My tree grew a man while we were out today.

 I sure hope it rains soon so I can get a good crop this season.

Trying to figure out how to watermark my photos.

I seriously need to up my game in the world of technology!

I'm around.  The kids are around.  There has been drama.  A little of the regular seizure drama.  A lot adoption drama.  I wish I could tell you all that has gone on but a) it just does not make sense to those outside of the world of trying to adopt (especially out of foster care and b) I have to be very careful with what I share for fear of shooting myself in the foot.

As added excitement my profile was shown in regards to a precious newborn with Down syndrome.  When I started this adoption journey it was always in my head that somewhere along the way I would have a little girl with Down syndrome.  No word of a lie in the last four years I have been this close to that vision becoming a reality yet in the end it doesn't happen.  What's up with that anyways?!

The summer is going relatively well.  The big kids have their day programs and the school kids are doing some day camps.  We're doing picnics in the park, hanging at the outdoor pool and just trying to soak up the sun while it's out.  Summer will be over soon enough.  It seems some of the trees have caught wind there are snowsuits at Costco and are starting to yellow their leaves.  It won't be long before Costco sets up its first Christmas tree (end of July beginning of August is when they usually do it.

I have been lazy with the photos as it is such a painful process with this blog format.  I don't know if it's any easy on others but for someone who is technologically challenged it's time consuming to be sure.

Hope you all are having a safe and fun filled summer!

Showering kids with intractable seizures is like speed dating. Get in there, sit down, hit all the highlights and hope you get done before the bell rings

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.

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.

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

Autism

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.

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

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."

Class of 2015

 It has been very busy around here.  The two teens graduated high school yesterday.  Their graduating class was only fifty five so the ceremony was meaningful and personalized.  The girls were of course beautiful and had a wonderful time.  It has really brought home to them that their school days are few in number.  For one it is reason to do a big dance of joy and the other feels a bit sad at the prospect.