Slip and slide

Spring came and went with little sun nor heat.  Summer is here and the weather has been about the same.  We've gotten to a point though if it is dry...it's a beautiful day.  Today we had a truly beautiful day with sun AND heat.  Whoohoo!

I pulled the slip and slide out quickly before the sun disappeared.

a helping hand

After years of experience and an ever increasing disdain for cold water, Phoenix believes slip and slides to be a spectator sport

It's always more fun if a big sister slides with

Teacher Extraordinaire

Teacher extraordinaire!  This is why I fought (and won) for Phoenix to stay in school for at least another year.  Phoenix developmentally is at about an eighteen month level but with almost nineteen years experience.  She is loads of fun to be with and definitely everyone at school loves her.

This teacher seems to get what I have been saying for years about teaching severely cognitively delayed students and that is you can make the curriculum or in some cases have a curriculum that offers a higher degree of language but keeps the tasks developmentally appropriate.  An example would be say talking about the heart.  You could talk about where it is in the body, that it is the colour red, has four chambers etc etc.  You could then have puzzles and crafts that correlate but are achievable by the student i.e. four piece puzzle referencing the four chambers.  A creative teacher (of which I am definitely not!) could come up with any number of ways to engage the students if only taking the time.

The teacher Phoenix has had for the last two years and will be blessed with again this year is new to special education I heard.  You would never know it.  She has a lovely demeanour yet high expectations of her students.  It used to make me laugh and sort of still does when I would get notes home saying that due to Phoenix pulling hair or other infractions she had to have a conversation with her about essentially knocking it off.  I would think to myself "good luck lady!" but Phoenix really has risen to the occasion and whether it be due to these conversations or the teacher's persistence I don't know.  Two years though of a great teacher and support staff have made a big difference to Phoenix's school day.

This was the second year that the classroom hosted an art show.  The staff set out all the kids best work, framed meaningful photos and served refreshments.  The kids were to come in dressed up and families were invited to come.  The other staff and students of the school also visited the class.  I have enjoyed it both times and look forward to next year.

Journey is hands down Phoenix's favourite person in the world (can I say...hurtful!)

Add caption

she will run me over to get to Journey, which by the way she did here

Does enjoy pictures of herself and the friends are ok too

Teacher Extraordinaire

Posthumous graduation

Today Ailish would have graduated from her elementary school program.  You know...if she wasn't dead and all.

The school so kindly included her in the video they put together along with offering me a special certificate.  Ailish loved attending school.  She would smile and giggle when going up the ramp of the school bus and enjoyed the love and attention of both the staff and students.  Even the kids with the most cognitive challenges would gravitate towards Ailish and would sit or lay with her.

I so appreciate the care and programming offered Ailish and the thoughtfulness of today.  Even at her funeral there was such a school presence and it meant an unbelievable amount.

Would it be out of line to put a graduation hat on the urn and take 'grad' pictures?  I mean really, if you can't dress your deceased child's urn up in costume for special events where's the fun?  Right?

It could happen...

January 6, 2011 was a tragic day for my friend and her family when their beloved AbbyMay passed away from a mitochondrial disease.  She had turned four just a month before.  The days after her passing I did my best to help where I could in the plans for the funeral.  As hard as it is to see your friends suffer it was nice to feel useful.

At the time of Abby's death I was very cognizant of the fact Ailish's surgery was looming near.  Her birthday was coming at the end of January and I had huge fears that it would be her last one. The surgery would be extensive and with her underlying condition of hydranencephaly I was concerned she wouldn't survive it.  This feeling of doom had made it's home in my head from the time we started talking about straightening her spine which was actually a two year process.

As I tried to contribute to making the funeral for Abby a celebration of her life I couldn't help but wonder if I was being groomed to plan one for Ailish.  Turns out I'm psychic and should hang out a shingle as ten weeks later I was making final arrangements for my daughter.

That all being said I can't help feel a little excited at this time (call me crazy...most do) because this same friend is in process to hopefully adopt a baby that has been in their care for two months.  If that's not exciting enough...let's turn this around to be about me cause of course that is how it should be....everyone and their dog knows I want to adopt again.  I just did a baby shower for my friend.  If huge life events are going to repeat themselves with us then it would only stand to reason that within the next two months MY baby should be here!

It could happen....

Abby's birthday.  Malia joined her in her crib at the hospice

Amazing!

Plagiarized baby shower

I tried my hand at hosting a baby shower this weekend.  It was in doing that I found a possible purpose for pinterest (is that how you spell it?).

I am sooo not crafty, creative nor imaginative.  I want to be but sort of in the same way I want to be an athlete and an intellect.  I want to just BE that not have to put effort into being that.  I like nice things and pretty presentation.  I like it a lot when other people do it.

In discovering Pinterest I was able to plagiarize the baby shower.  The bonus....it's totally acceptable! 

Everyone loved the cake to which of course I took credit for making.  All the kids, some who don't know me well called me on my schtick and didn't believe me for a second.  The bakery box might have given it away however kids are intuitive and of course picked up on the fact that it would be highly unlikely that I would have been able to accomplish that.

I might have copied everything else but the bows which are actually hair barrettes that I scotch taped on were TOTALLY ME!  I know, right?

Cant get this child to consistently do her chores but throw a party and she totally puts out (hmm bad choice of words I suppose so change that to works really really hard at her own initiative)

The baby of the hour

Nana love

The mother hitting the mother load

They don't care what the reason, if there's party food then they're there

Poor photography but great idea

Sadness Smackdown

Sadness has a way of jumping up and smacking you in the face.  There you are going about your day and then there it is.  No rhyme nor reason sometimes and then others it stems from any number of triggers.

People always talk about getting through all the firsts after the loss of a loved one.  You know, first birthday, Christmas etc etc but what no one tells you is that every year after there are what seem to be more firsts i.e. this is the first year after the first Mother's Day since Ailish has been gone. There are a million of these.  Last year right at this time we did the butterfly release party in honour of Ailish.  Happy Anniversary.  That was pretty much the last time the majority of my friends wanted to come together to celebrate her.  Not that they don't love us or Ailish but enough all ready.

Unfortunately it is never enough and the sadness doesn't end or at least I don't see an end in sight.http://animoto.com/play/roR8uPqVIm6QxYW1mzanIw

AWWWWWW

This grown at preschool plant according to Malia is going to grow into a giant bean stalk that will grow high up into the sky.  When it is all the way grown then she will climb high high into the sky and go see Ailish.

Can I get a great big resounding AWWWWWWW

Same time, same place?

See ya again next year, around the same time, same place?  It turns out you can fight city hall and sometimes, just sometimes you will win.  I took my complaint that Phoenix was being graduated from school too soon according to the education act to the provincial government and she has been granted another year.  This is HUGE!  I continue to learn as I go along as four of my kids if not five could have had this same time at their school but were graduated at eighteen but instead I found a different school that would provide them entrance.  Our education act reads in such a way that it can be inconsistently and arbitrarily implemented.  I've sort of had enough of that.

Though I have been told by the political fellow I approached that Phoenix will have another year as he was directed by the Minister of Education's office and also by someone else from the provincial education office I have still not been informed by our local board.  I have a feeling they are going to be a tad miffed.  I'm thinking that although the school loves Phoenix and I have had a positive relationship with the school going on twenty five (yes that is 2 5 years) I'm thinking I might not be all that popular for a while.

I am expecting that when I finally do hear from someone locally that I am going to be told that we will get one more year.  I might have to remind them that there is a proposed new school act that has the age of graduation being raised another year....  Baby steps I guess.  Don't want to make their heads explode yet.  If nothing else this will force everyone to get on the same page in regards to how to implement the act and make it fair and accessible to all and for the Minister to clearly define length of time in school as it pertains to the severely, profoundly disabled student.

As it stands now however is that Phoenix will remain in what I consider to be a productive, stimulating, nurturing environment.  I suppose it might be too much to ask that she remain with the same teacher?  One more request might just throw them over the edge.  Course that's where I live and the weather's not too bad so they might like it...

As an aside....is it considered inappropriate to tell your local politician who accomplished what some said would never be allowed if he were beside you at the time of the good news you would kiss him on the lips?  Ooops....

stuck

"I'm STUCK!"  S'rsly is it just my kid?

Hard work...or worker?

"Am I a lot of work Mommy?"  Well Kid I didn't want to say anything but yes, yes you are a lot of work.  Ohhhh, you meant are you DOING a lot of work.  Ya sure, ok, you're doing a lot of work.

L.O.V.E

L.O.V.E.

Wormy

I will have you know that then at that moment I was mother of the year...self proclaimed.  In my youth I had zero issue with slippery slimy worms.  In my elderly years I seem to have developed some.

Here's the thing...when you have a visually impaired child if you want them to know the whole world even the creatures that slink and slither in the earth then you must swallow your disgust, pick up a worm and marvel at its 'beauty'.  As it wiggled in the child's hand I even saved its life a few times.  I prevented it from dropping, being squished and even accidentally cooked on the deck stairs.  I'm not heartless!  I stopped myself from  suggesting naming it and then have it possibly come to an unfortunate end and then having us both attached to something that had a name, potentially a family then being forced into planning a funeral etc etc.  And....there is no way I am having a teeny tiny urn with the remains of shrivelled worm on my headboard.  The other child being there is quite enough!

the worms home and the eventual home to flowers .  I hope he/she will like them

MAY DAY! MAY DAY!

May Day!  May Day!  The child has a uti and a sore throat!  Predominant symptom....MISERY!

Send alcohol!  (ya know for disinfecting purposes....)

The Graduate

Today Phoenix graduated school.  For most parents this is a grand day and one worth celebrating.  Everyone's hard work over the past twelve years culminated into pomp and circumstance.  Excitement is in the air maybe tinged with melancholy and a bit of sadness as children have become adults seemingly overnight.  Futures are bright.  The world is their oyster.  All they need is drive and determination and there is little that can stop them.

What about the graduate with severe disabilities?  What becomes of them once they no longer have school to attend every day?  Here in our province we are lucky in that adults with disabilities have access (limited in space mind you) to day programs.  I say lucky however it is a world that in no way competes with the quality of programming and social interaction that exists in a school environment.  It is frustrating to see all the hard work the teachers and support staff have put in often times go to waste as the education and experience expected for them to have when employed in the schools is not at all a requirement in the day programs.  The activities and stimulation are vastly different.  Because the graduate with disabilities is also over eighteen, between whatever the current philosophies in the field of disabilities dictates and the provincial government regulates they are then granted all neurological faculties they were not provided with at birth thereby giving them decision making capabilities yet none of the responsibilities.  Should a person with cognitive disabilities "decide" that when they go to their day program where thousands of dollars are spent to staff etc that they want to remain covered in a blanket on the floor all day well that is their right as an adult to make that decision.  Should they want to wear their coat in temperatures in the high eighties that is their right to make that decision as well even though they do not have the cognitive capabilities to understand the health risks in that choice.  Telling an adult with a developmental disability "no" is not allowed.  For some of my kids that potentially means you have a giant two year old running the joint.  My point in saying these things is that so much time, energy and creativity is spent in providing an appropriate education and graduation comes along and then what?                                                  

Don't get me wrong.  I want my children to be afforded the best care and in as dignified a manner as possible.  I want the language and tone used to communicate with them to be appropriate, least restrictive and respectful.  I want them to be offered choices in their day and for them to feel in control whenever feasible.  That all being said the adult with developmental disabilities has to be met where they are and for some that might be at a twelve to twenty four month cognitive level.  Choice making, direction, limit setting can all be done in the manner that I have stated taking into consideration the developmental level then providing what I believe to be a more secure, productive quality filled, safe day.  I wish that was the case in all the adult day programs.  As in anything when we try and regulate we become stringent and lose all common sense.

In getting back to my gorgeous graduate.....  Though I am saddened about the possibility of Phoenix leaving school this year (long story...trying to get more time based on her age...) we celebrated her and her school mates.  They were all so excited to be wearing the gowns, having their families there and it being a day about them.  I am very proud of Phoenix.  She has made some great gains in the last few years.  She has such determination and a great sense of fun about her.  She knows what she wants and she knows how to take a big bite out of life.   A totally fantastic, awesome human being.

Gawd help me the dog graduated too!

The tears were typical for her with over excitement

Too gorgeous for words

Proud of some of the pictorial highlights of her year

Best teacher EVAH!

sailor talk

Trying to get through Superstore with an oppositional, defiant five year old for whom a diagnosis of attention deficit might just be around the corner could just make the saintly among us to swear like a sailor.  Or....maybe just me

Gasp! Grade one looms near!

I've been prone lately to some sadness over Malia entering grade one in the fall.  I have had the same feelings with all of them.  Once grade one hits so many hours are spent away from home and I no longer will know almost everything about her day.  There are the worries over will she have friends, will the teachers understand her idiosyncrasies and know that her outbursts are still disability not those of a bratty child?  My concerns are endless and don't get me started on the transportation to school!  No one has ever driven the child but me and now I am to entrust her to a stranger!  Oh the humanity!

All that being said...when we have shopping days like today.... I can see some advantages....

Beauty

HAPPY BIRTHDAY COLLEEN!!!

We went out to Red Lobster for the celebratory dinner.  No waiters or waitresses were harmed during the dining process.  (Whatever they may have slipped and fallen in after we left we hold no responsibility for)