Fall photos

Took the opportunity today to get some Fall photos done.  Some of the kids were willing, some notsomuch so a few are noticeable by their absence

Ailish's last Fall picture 

funniest picture today

sweetest picture today

"smile Hibo...smile...

so much for smiling

Success!

Yesterdays note home from school.  Can we all say Holla!

Hello,
I spoke with the Ed. Assistant about yesterday afternoon and she said it went well. The only issue was when recess ended.

Today was FANTASTIC! She came in and did a great job during the Fire Drill and Terry Fox run. She also worked hard during our Community lesson in Social Studies. This afternoon we went to library and she picked a braille book to read to you. She came in at recess and did a great job in gym. The only issue today was when she hit an Ed. Assistant at the end of the day. She did say Sorry after I asked her to.

WTH?!

Things said to my precious in grade one every day by teaching staff (as told to me by said student)

"Malia!  I don't like you anymore!"

"Malia!  Go to your bed at your home!"

"Malia!  I don't love you anymore!"

Then they have the nerve and audacity to
   squeeze her leg
   pinch her leg
   whack her on the head
   hit her on her chest
   slap her hand
   kick her

It would appear I would need to go to the school and have some folks fired at the very least however.... I know the child and what comes out of her mouth.  She has a tendency towards dyslexia when recounting events.  What she says they did....she did.I told them at the beginning of the year that it was possible when angry the child would say that her sisters had done any number of the aforementioned things to her and that perhaps I had a go at her too. I asked that before they called Child Welfare I should give them the list of things they had done to her at school.  We might all be on the same page.  Here's hoping.

catching raindrops

Bazinga!

Dear booking clerk lady in orthopaedic clinic.

You have a very difficult job I am sure.  Trying to fit children into a least two very busy surgeon's schedules, some for initial assessments, some for reassessment and some emergencies.  I would not want your job.  The number of calls you must field each day, messages to return, faxes to process I imagine could adle the best of minds.  That being said I would like to further our conversation today when you so rudely posed the question as to why I was putting off the appointment you were trying to schedule when it was your understanding our need to see the surgeon was urgent.  Allow me the opportunity to explain our situation so perhaps having a window into us you won't be so quick to judge  me and other folks who have just as much to juggle as you but with higher stakes.

My daughter is complex.  The primary presenting issues in the genetic syndrome that has a hold on her are orthopaedic.  Because the syndrome is caused by a mutation in each eighth chromosome every cell in her body then possess the mutation and is affected by it.  Not only is she plagued by chronic pain in her joints she has issues with her digestive system, neurologic systems as well which by the way also cause her pain.  To add insult to injury the child has learning disabilities making successes at school and in every area of her life hard won if at all.  Most importantly this daughter of mine is a WHOLE person.  She has goals and aspirations.  She was born to take a bite of life but also with a body that fails her.

Here is the reason I tell you all this.  Yes the appointment we are trying to agree on is urgent.  The child needs to be seen.  She also needs to keep up with her school work and every moment missed by attending appointments is twice as hard for her to catch up.  The child has other doctors and professionals vying for her time.  This week alone she has seen a gastroenterologist and an academic counsellor which have lead to more procedures and missed school.  The child also needs to have the opportunity to participate in something that gives her joy, solace, peace and a feeling of accomplishment.  All of this requires a team effort.  We desperately need the assistance of the professionals in each of the clinics we are attached to.  We need them for their expert advice, compassion and support so that the child can live her best life.

When there are complex needs and many people involved with all their demands there has to be someone at the helm steering the ship.  Someone needs to be seeing the whole child not just the isolated symptoms of her disorder.  She is more than an end product of a mutated gene.  All of her needs to be tended to and that means prioritizing.  The current issue is a priority as it is new and causing sharp pain however the problem is likely not going to be solved at the appointment.  Preliminary testing has been done and the surgeon has the results.  If he needed to see us immediately we would have been called.  The next priority is a pressing matter at school.  Seeing the doctor within the week will be fine the school will be tended too and hopefully we will have a calm, collected kid with less pain at the end of it.

This is the reality of raising a child with multiple needs.  This is a new reality for me with this particular child.  Most of my children are complex and have multiple areas of need but the difference here is that this one has academic capabilities and goals.  For my others in all honesty if they missed a few days of school in a month chances are they aren't going to miss the day where they learn how to cure themselves.

To end my dear booking clerk, I do apologize if you think I am not jumping as you think I should and that I am "putting off" this urgent appointment.  Your goal is to organize two (at least) very busy schedules.  My goal is to raise a physically, emotionally and psychologically healthy productive member of society.  BAZINGA!

Yours truly

The Captain

Oh My...

My vacuum is broken.  Blessing or a curse.  Discuss.

please please please....

Oh Lawd!  Please say the dog is now using a cup......

I have nothing if not restraint....

I will thank you all to congratulate me on my restraint today.  Miss Malia's school called today hoping I could calm the child down after she had fallen on the playground and skinned her knee.  When the child sees blood on herself hysteria ensues.  When put on the phone she sobbed and sobbed telling me she had fallen and hurt her knee "really, really badly".  She then proceeded to tell me that I needed to come and pick her up right now.  Between the sobbing and pleading for me to come get her I nearly came undone.  I almost went to get her.  For realz.  But I didn't as that in the end would have served my needs and her immediate but not long term need to develop coping mechanisms.  I hate thinking long term sometimes.  Have no doubt if the wound was significant or perhaps on her head etc I would have commandeered a chopper to get to her but...it was a skinned knee.

The reason for the bandaid on the outside of her tights?  She will never let anyone get near a wound.  School has a need to cover wounds.  I see how they compromised.  I still have yet to see the gaping cause of today's drama as I am not to touch it or her leg will surely fall off.

The child is home from school now and she seems not to hate me nor begrudge the fact I did not come rushing to her in her hour of need.  I on the other hand still wish I had...glad I didn't...but still.  It's for the greater good.  It's for the greater good.

Let the applause, pats on the back and congratulatory messages flow.

First Parent Teacher Conference

Had my first parent teacher interview for little Miss Grade Oner.  I pretty much knew how things are going at school for her and her poor suffering teachers but it was good to sit down with most of them and recap.  There have been some successes in the last three weeks e.g. her attempts at hitting, kicking etc are half hearted some days.  Baby steps.  She has friends.  Huge worry of mine.  I was afraid that with the disruptive behaviour she was throwing out that none of the kids would like her.  Lucky for her it hasnt been too much an issue thus far.  

She kissed a classroom assistant last week.  Guess what?  That's a problem for them.  The child felt all warm and fuzzy at school for at least that moment and demonstrated it by giving a peck on the cheek and though it hasnt happened before or since it was brought up.  If I had a choice and I was the teaching staff I would choose the warm and fuzzy Malia over the rabid one but maybe that's just me.  I understand their concern particularly in this day and age so don't want to belittle it but the contradiction amuses me somewhat.

Basically no surprises.  One thing was brought up at the end however.  They are afraid to take the child on the field trip.  In June.....

Times a day

You know the statistic that quotes the outlandish number of times a day men think about sex?  That's how many times a day I think of Ailish...multiplied times over again.

Grade one

 This is what came home with Malia today.  With only a small amount of help to compensate for vision she was able to read the whole page.  Below are the reading words for this week....

that is hand over hand printing

Here's the big problem.  Malia has essentially no printing skills.  She can print her first name.  That's it.  She can type her full name and on a good day her middle one too.

The directions as you can see are for her to use the first three words in a sentence.  Malia has no concept of what that means.  Do typical grade ones have this skill?  This is the first week they are getting down to business as the first two were setting the routine etc.

I know that in this age of technology that adaptations can be made for the child's lack of scribing ability however she should have the skill unless of course we are uncovering a learning disability?  Perhaps I have failed the child in my choice of preschool education leaving her grossly unprepared for grade one?

This is new ground for me people.  I have three other kids that read but at this age their programs were significantly modified and in a specialized setting.  This is the real deal.

In doing the homework tonight I discovered I am not set up for her to be successful positioning wise to compensate for her vision.  I think it is easily rectified but in watching her attempt to do some printing and reading it was a struggle as she couldn't see what she needed to in order to copy etc.  She needs to nearly put her eyeball on what she is reading.

Parent teacher interviews are this Friday.  It should be a rousing good time for all concerned.  I'm showing up drunk....

Race Day

Today was race day otherwise known as the Cerebral Palsy Association's Life Without Limits Challenge.  You can run, walk, wheel your way through a course that is as much as twenty kilometres or whatever distance you choose to do.  We have overdone it other years so most of us did maybe a total of two km while some of the others with a sister at the healm did a whopping ten!  The weather was great, company even better and all in all a great event.  Malia got to emcee a bit.  Being this year's poster girl she was also given the award for most enthusiastic participant and one with the most attitude.  How they came up with that last part I have no idea!

We all did well with only one small seizure on the walk.  No one fell, short of one tiny spill off the bike and there were few tears from everyone.  The only use we made of the first aid people was in them taking our picture.  A successful day from all accounts.  Days without bloodshed are considered a success (we won't count a small scrape on Amanda's finger).

A day well worth the effort to be sure.

Don't they look eager, my motley crew of athletes?

an adapted bike we are trying out.  A few alterations and by the end of the week the bike should be hers

I know.  Can you say adorable?

trying her hand at the mike.  Too bad she couldn't remember the song she regaled us with all supper "we are never,ever,ever, getting back together..."

Look at me!  I am wearing a shirt that in some circles indicates I participated in an athletic activity perhaps even  hinting I was an athlete.  This is how you can lie with photography...

You never like the answer

Teenager calling from school bus "what are we having for supper?" Me "what have I told you about phoning and asking that question as you never like the answer?" Teen " no, just what are we having for supper tonight as Alyssia and I are feeling chineseish" Me "when you have the 150 to 200 dollars it costs to feed us chinese food then we"ll talk." "Ok bye..."

No applause please...well at least not without a standing ovation too

I am the Queen!  Bow down at my greatness!  I am but fifteen and a half months old and I have finally mastered going to my rocks....wait for it....by myself!!  I know right?  Now I should qualify that statement.  I should perhaps have said I no longer need to be on the end of a leash to go to my rocks.   I of course still require an escort.  I mean, all royalty requires an entourage, security, a posse right?  We can't be expected to do our bizness by ourselves.  Who would be there to cheer?  Who would be there to witness our greatness?   Feel free to congratulate me by sending cookies and bits of your laundry.  

Third day is not too early to have someone fired is it?

Day three is not too soon for me to want a classroom assistant fired is it?  I didn't think so either.

I was speaking with a woman who is not my child's regular assistant but was assisting in some behaviour management yesterday and was questioning her about the chain of events, the "quiet room", its use etc.  At some point in her explanation she proceeds to say to me that she worked with ANOTHER child with ODD (oppositional defiant disorder).

S'cuse me?!  You are the classroom assistant and you have diagnosed my child with a mental disorder under the DSM, throwing the label around like its nothing.  "uh listen lady"  I said (no I didn't) Malia does not have a diagnosis of ODD."  "She doesn't?  Oh...well...we dont have much information on her"  Uh ya, ya do as I listed every diagnosis she had on the registration sheet and you should have her previous program records.  "YOU"RE FIRED!!!" I yelled through the phone (no I didn't).

Here's the thing....  It has crossed my mind in the last two years that the ODD label might be in the child's future.  ADD might be more initials associated with her, I don't know.  What I do know is that it is DAY 3 of a full day program packed with expectation she is F.I.V.E years old and  has BRAIN DAMAGE.  Each one of her current diagnosis outside of just her age can be associated with behaviours and by behaviours I don't mean quiet, discrete ones.  I know she is hell on wheels and is putting you through your paces.  It is highly likely that you have not seen her charming side or the really funny side of her either so you perhaps have not yet found the little something that you can be fond of.  That being said....unless you have your doctorate in psychology and my permission to give the kid a full assessment....keep your staff room diagnosing to yourself and especially do NOT hang a label on a kid that could have a huge detrimental effect on her future while in the school system.
Here I was going to come bearing alcohol and chocolate tomorrow to soothe all the shattered nerves of the week caused by my princess and perhaps suggest to them that coming to school drunk for a while might be a nice option for them but now No!  They've blown it!

Oppositional Defiant Disorder!  They can kiss my fat white shiney caboose if they think my kid has that!  I mean...where would she get that from, stupid people in authority!  Make me soo so mad all the time!  Hmmm...I'll think on that a bit...

What the problem might be is they are under stimulating the child.  I mean look here at home she is doing a total knee replacements via iPad!

Unexpected side effect after losing a child

The biggest transition to occur in the seventeen (gross) months since Ailish died is that Malia has entered grade one this week.  She is not quite six and has literally been my shadow for almost all the hours of her days.  She has attended preschool for two hours a day over the course of the past three years but other than that she has been at my side as most preschoolers are with their mothers.  

Transitioning to big girl school is usually more painful for the parents than it is for the children which is the case at our house.  I really miss having her around chatting my ear off and challenging me at every turn.  I expected that and I expected the worries and fears that the majority of parents have when sending their kids off to school, and most especially when we send our 'uniquely' challenged kids off.  What came as a big shock for me was that first day of school was that I had to remind myself, as in consciously say to myself "the child is not dead, she is just at school"

That might seem crazy and overly dramatic and to that I say "who me?  That's so unlike me to be crazy and overly dramatic!"  The truth of the matter was it was really necessary.

After Ailish died and still sometimes to this day I would hear her, go to tend to her, start to say something to her etc etc only to be kicked in the gut when the realization hit that Ailish was no longer living.  Never would I hear her, touch her, feel her again.

When similar things happened the first day of school regarding Malia I would feel that familiar blow to my heart which lead me to have to reassure myself the child had not died but was doing what all kids do that being starting school.

As I have mentioned often and feel most especially every morning....I am old.  Having kids start elementary school is not new for me.  As the saying goes...this is not my first rodeo.  I can honestly say that though I missed my little ones as they embarked on their educational adventure, worried for them throughout their early days and thought of them often, I never once thought they were dead.

Just another 'bonus' of losing a child.

Death and grief are stupid!

Shopping....alone....

Today I went shopping.  I got everything I needed and was able to take the time to price check and pick up a few extras.  I forgot nothing.  I at no point needed to redirect, console, motivate, cajole, beg, quiet or search for anybody shorter than my waist.

This made me sad.

I grabbed the smallest person I saw, made them hold my hand,  promised them time at the play space and new apps for their iPad if they stayed with me until all shopping was done.

I don't think the lil ole granny was very happy with me which then made things completely right in my world.

Transition. I'm not ready!!

It's my opinion if you have to ride in this to grade one you are too little for school.

Malia starts grade one tomorrow.  She is still just five at least for another two months.  Academically she is ready.  Behaviourally it is questionable however it is part of her disability.  I really do hate this transition where the babies go from the years of being at home with Mommy to the four walls of big kid school.  Right now I know everything that is going on in her day and pretty much in her head.  Including transportation time (done by school taxi) she will be away from me for eight hours.  I am excited for her as she will gain knowledge and different perspectives on so many things.  It is the start of a whole new world for her.  At the same time I am scared for her too.  As charming as she can be, articulate, precocious, hilarious, she is quirky and at times explosive.  You have to know how to approach her and how not to.  There are definite dos and don'ts.  There are ways to manage her when she does go off the rails.  Some of these methods are hard to put into words and you have to have an intuitive nature to work your way through.  There will be a lot of staff involved in the specialized program Malia will be attending but their specialty is in vision impairments not so much the quirkiness that is my daughter.  Some of you might be thinking that I am over anxious and that the staff will work it all out.  I am hopeful...I really am but I also have enough experience with our school board to know that all staff are not made equal especially in the world of classroom assistants of which Malia will spend most of her time with.  If we were only dealing with the vision impairment and her mild cerebral palsy my fears would be less.  When you have a child who can be difficult the fears are that much greater.  Malia's behaviors can present themselves of being that of a spoiled, over indulged child.  She is very articulate and she uses her words as weapons even though she doesn't sometimes understand all of what she says just that she knows it's not nice to say.  Luckily profanity has not entered her vocabulary!

I will send Malia off in good faith.  She has been saying she is excited to go.  I have shared that excitement with her.  She is so different from my other kids at this age at least academically.  If we can harness her behaviour the world really can be her oyster.  She has been able to overcome and accomplish so much more than was ever expected when the condition of her brain was discovered.  There is no reason to think she won't continue to excel.

I love her beyond measure!  I will miss her being one step behind me all day every day but I can hardly wait to see what the future has in store for her.  (We have discussed her becoming a lawyer because you can argue for money...  Hey it's an honourable profession...for the most part and someone has to have the earning capacity to support me in my fast approaching "golden years"!)