Change Is Never Easy....

It seems that just as the kids begin to settle in with their teachers and become accustomed to the expectations of the classroom, it is time to start thinking about next year!  Transition planning can be quite stressful for families and school staff but it is very important work that can be the difference between success and struggle. 

It’s assessment time!!  I am not a fan of assessment time (I'm sure the teacher's love the nine people, observing at the back of their classroom room;); I find it to be a redundant, deficit-focused, devaluing, depressing process…..on so many levels!!!  I do understand that there are benefits and “you can’t manage what you can’t measure”.  But spending a few months each year while groups of individuals take turns evaluating my children to determine their eligibility for funding and supports blows!  Could I please fill out another questionnaire?!  How about another rating form!?  What number is he!?  He’s an ‘8’!!!  Right on….funding approved!   (I’ll just pretend I didn’t read the definition of an ‘8’).  Once, in Blade’s case, some involved professionals (who shall remain nameless for fear of shaming them;) actually expressed disappointment when the assessments determined that he is not in fact autistic, just really smart with ADHD, and exhibits  effects of  living in emotionally stressful environment.  I was trying to celebrate the fact that my son did not have autism, he had a very manageable diagnosis, and with careful strategies he would be just fine…. they were groaning because he didn’t bring a higher funding codeL  Seemed to me, the suggestions that arose did not require money, just a different way of managing him. 

A Psychologist, a Physical Therapist, an Occupational Therapist, a Speech Therapist, a Behavior Consultant, Inclusion Consultants, an Infrastructure Consultant, and District Leaders are amongst the flurry of people in our school last week!  Carpenters were also at work on the lift to the lower level where Carson’s classroom will be next year.  A bathroom will be retrofitted; a ramp will be improved at one entrance and added at another.  The teacher’s will receive recommendations regarding classroom design, and an aid will need to be selected that can transfer a 50lb child approximately 35 times a day to ensure meaningful inclusion.  It is overwhelming to see the attention being paid to the boy's transition, I never imagined the kind of effort and planning our 6 years at our community school would take, there was so much I never considered.  I trusted Edmonton Public to deliver what they advertise and I am pleased to report….they do deliver!  There is support for inclusion! 

Assessments can be damaging when it results in a child being recommended to leave their community school for a segregated program because they need love, acceptance, consistency, patience and planning.  All of that should be available to all students (even the one who is annoying), in every school.  Or in the case of PDD funding, where an IQ test determines funding eligibility…too bad employers don’t value the IQ test as much…this leaves many people (for example, with autism) unemployed and without supports when they reach adulthood.  

I disagree with how various assessments are used, I wish there was another way, I don’t have the answer (yet;). In the meantime, I will sign the consent forms, and check the boxes on evaluation forms in order to help my child's teacher receive all of the support they need to teach, with my child included. The wonderful thing about the assessments is that it gives written strategies for us and the teachers to use; it is something to be held accountable for.  As long as we are all putting into action what is written, we should begin to see success.  IPP meetings, transition meetings, and assessment meetings are only worth the time and effort, if the ideas and strategies that arise are implemented at home and school.  It is hard work…no one doubts that, but isn’t the success of future generations worth that kind of effort?  

He’s Not a Burden, We’re Not Broken

When Blade was a baby, his sweet smile and mop of blond hair, would often attract ooh’s and awes from anyone who laid eyes on him.  Standing in a check out line was a great place to show off my boy and brag to strangers who’d say, “Awe:), how old is he?” 

Blade...Awe:)

Carson also has a sweet smile and a mop of blond hair but when I stand in the check out line with him, we often feel pitied, stranger’s say, “awe:( what's wrong with him?” It is not the question that that rubs me the wrong way, it is the delivery.  I do realize that this response to Carson is intended to be caring and empathetic and that people have a right to be naturally curious and question the world around them, but pity is an almost daily reminder that most people view circumstances like ours as a burden.  Many people measure quality of life by ones ability to walk, run and talk so when they see Carson, sadly some assume he would be better off unborn…..they would be very, very wrong.

Carson... Awe:)

We are not burdened by Carson or his diagnosis, nor are we broken. Carson is a blessing just the same as our other two children are.  He is happy, full of purpose, irresistibly adorable, and he can already assume credit for inspiring a lot of positive change in the world.

My biggest beef is in regards to accessibility.  I would happily trade the over-abundance of pity for consideration and wide-spread Universal Design in a nanosecond! I try to be friendly and positive yet, I find myself turning into a defensive b*tch in parking lots.  When I get my able-body out of my car to unload the kids, I am often shot looks or rude comments from people who assume I am abusing a disability placard.  Many people have remarked that I am lucky to be able to have access to the primo parking spots.  Frankly, living with physical limitations is a fairly high price to pay for a good parking spot.  Not to mention, in many places there is only one or two parking stalls (if that) designated for person’s with disabilities, which means that equal access is not always guaranteed. 

We have had record breaking snowfall in Edmonton this past week, my patience with people is running out.  It seems that many people feel that accessibility is weather dependant…those folks would be wrong (and rude).  How does someone justify parking where ever they want because there is a ton of snow?  If accessibility is compromised for able-bodied people, just imagine for a second how much more it is reduce for a person in a wheelchair.  Ever try pushing a wheelchair through the snow?  Ever try carrying a 50 lb child with low muscle tone through a snow bank? (I know many people; myself included, who just answered yes)  Both are not only difficult, but unsafe. 

If not for great friends and strangers doing good deeds, making considerable effort to clear snow ahead of our arrival, and ensure a reasonable access point, effectively replacing my frustration with gratitude; I believe I would see a decrease in my impulse control (and I am white knuckling it at times as it is).   Every effort made is such a blessing. 

A beautiful sight a midst all the snowfall, right in my own community:)

I apologize to the elderly couple that I misunderstood and blasted in the Londonderry Mall parking lot.  And to the guy who was trying to help someone out of a snow bank and got in my way, causing me to get stuck and have a mild tantrum about it before accepting his help to shovel and push my car out.

Thank you Mom for making our home accessible by shoveling for the past week!  We (and our neighbors) are going to miss you.  Thanks to Rich for making the school parking lot and sidewalks accessible….our community is lucky to have friends like you:)  Thanks to the school staff who shoveled and held open doors, greeting us with us with a smile, in spite of their hatred for the ugly weather.  Thanks to the neighbors who shovel our walk.  Thanks to Crystal for supporting me and empathizing with me during melt-downs (my bff drives a special needs school bus...she kinda gets it;).  Thank you to the school staff and Lisa for not making me feel like a delinquent parent for not taking my kids to school for half the week:)



I will call this  'Mama Mountain' until it disappears (in July likely!)

It's About Building Relationships

The roots of my advocacy are in our family’s vision.  I was not born an advocate; I learned to be one because I need to be one.  It was through the GRIT program that I learned the value of a vision, collaboration, and communication.

A vision statement is a written description of the possibilities we imagine for our child.  Having a strong, clear, vision and sharing it with other helps to ensure our child is included at home, school and in the community

I have found that sharing our vision is a great way to build relationships, especially at school.  Teachers have a much greater advantage if they know and care about the child they teach.  I went a little further than a vision statement; I made a scrapbook to help people to see, through pictures and journaling what amazing kids we have and what we do in order to help them succeed.  It is hard to see the good at first glance; we are a bit of a gong show!  By building relationships at our school and within our community we build security.   I sum up our vision, telling people that I want to stand at the door of my child’s classroom and pause, as I take a few moments to find him. When I do spot him he is a midst a cluster of peers engaging in the topic of the day.

When Carson goes into each new grade I share the scrapbook…it’s more personal.  I don’t consider myself a crafty person, ask anyone who knows me, I avoided the card-making, scrappy world like the plague.  One night at a workshop a parent speaker passed around a scrapbook of her teenager’s journey, it inspired a closet scrapbooking frenzy.  Why a closet scrapper?  Scrapbooking is an emotional journey; just me, some tunes a large mess and beautiful photos of our family. 

Page 1 (text below)

                               

                              Our Vision

Making the best choices for Carson’s entire lifetime is a daunting commitment, one we don’t take lightly.  We think about our future with him all the time.  The bottom line for us is that Carson has a joyful, safe and nurturing life and we will do what we can to ensure that happens.

We learn new ways to include Carson in our family life everyday.  Ronan, Blade, Meagan and Myself are each learning how to envelope life with Carson at our own pace, in our own way, gratefully, with the support of GRIT. These past 2 yrs have been ones of growth for our entire family and circle of friends. We are learning to communicate better with and for Carson and about what his interests, needs and capabilities are.

Carson enjoys being around his peers and his peers also enjoy him.  It is heart warming every time another child tells us what our son is “saying” to us.  They want to communicate with him so they watch and they learn his gestures and they take pride in being Carson’s friend.  He is learning to use a walker, and he is signing “more” consistently!  And he loves water play and action songs.

 It is such a regular feeling to be roster mom at community playschool, while Kendra lovingly guides him through relationships, fun and learning.  How sweet it is that Miss. Kelly comes to Carson to say good-bye because he is far too pooped to go to her?  I never imagine something as simple as an invitation to a birthday party could feel so great!  We ALL feel included. 

We want to continue the growth and take advantage of the wonderful learning opportunities that GRIT has to offer.  We want to combine the best of both worlds by having Carson included in regular kindergarten at Beacon Heights in the fall 2010 with our GRIT team including his developmental specialist and consultants.  I used to worry about how or if inclusion could work for a child like ours.  I don’t have to worry anymore because GRIT has shown us it CAN be done. 

Page 2 (poem below)

Heaven's Very Special Child

A meeting was held quite far from earth
"It's time again for another birth,
Said the Angels to the Lord above,
"This special child will need much love."

"His progress may seem very slow
Accomplishments he may not show
And he'll require extra care
From the folks he will meet down there.

He may not run or laugh or play
His thoughts may seem quite far away
In many ways he won't adapt
And he will be known as handicapped.

So let's be careful where he is sent
We want his life to be content
Please Lord, find the parents who
Will do a special job for You.

They will not realize right away
The leading role they're asked to play
But with this child sent from above
Comes stronger faith and richer love

And soon they'll know the privilege given
In caring for this gift from Heaven
Their precious charge, so meek and mild,
Is Heaven's very special child."

Edna Massimilla

Page 3

Page 4

Page 5 (family inclusion)

Page 6 (community inclusion)

Page 7

Page 8 (our playschool experience)

Page 9 (text below)

Page 10 (an exerpt from my Hope and Harmony speech)

It does make me feel vulnerable to be so transparent with my life but it makes a difference in the way my children are perceived and treated.  I made a scrapbook for Blade too, but his was for him and is up to him to share.  He took it school last year to share with his whole class, he has just recently asked me to make some new pages for him to share at school.  Blade's scrapbook is a whole other blog because I made it to show him, not others, how beautiful he is. 

Being a parent advocate is difficult and emotional at times but when people really care, they are inspired to help

  

We Decided to Have a Very Merry Christmas!

Blade’s first Christmas started the night we celebrated with Meagan, before going to Saskatchewan to visit my side of the family.  It was a Christmas I won’t soon forget.  We went to the mall that night to see Santa and have the kid’s photo taken with him. 



(Our car is being stolen right now)

We took in the sights and sounds of Christmas and saw Santa before leaving the mall to discover that our car had been stolen!  I was absolutely heart-broken.  My wallet, Blade’s car seat, everything!!!  Gone!  Who would do such a thing just days before Christmas!?  How would we get to my mom and dad’s place now!?  I swore, I cried and I did what any self-respecting adult would do….I called my Mommy! 



That's my Mom, riding in to save the day!

The moment she heard the sobbing sound of my voice, (she’s heard me upset once or twice over the years) she donned her cape and assured me that Christmas was not ruined, and that I would be home for the holidays if she had to hire Santa himself to get us there!  By the end of that evening she had called with our flight itinerary.  Even still, I cried most of that night because I felt hurt and violatedL  

Mom got a great deal!!

The next day, I used the money Mom had wired and bought Blade a new car seat, our flight was due to leave the following day.  After that, I went through the McDonald’s drive-thru to get Ronan and Blade a bite to eat.  I wished the girl who served me, a Merry Christmas and went to sleep that night feeling much better about the world.  

At least we still get to go home:)

We were getting ready to go in the morning when I checked our bank account and discovered that all of our money was gone!  It was there yesterday, gone today!  It didn’t take long to realize that the last transaction I made was at McDonalds.  Long story short, the girl at the window saw my pin #, kept my card, and withdrew all the money as soon as her shift ended. The smile she gave me as she wished me a Merry Christmas played over and over again in my head.  How could she do that to me!?  I felt victimized, angry and hurt all over again, I worried I’d never be able to trust anyone ever againL  We flew to Regina where my Mom picked us up, making us feel like us being there was a gift to her. 



Nana gushing:)

Before the end of a wonderful winter visit with our family and friends, my Dad and Ronan went car shopping and purchased a 1995 Chrysler New Yorker.  It was in great shape and we got it for an ok price.  The Royal Bank in Esterhazy was awesome and had my stolen money back in our bank account within days!  All was right with the world as we drove back to Edmonton in our new (to us) car. 

New to us!

Just 15 minutes shy of the city something went wrong with the car.  It wasn’t good, the engine light was on and things smelled really bad!  We pulled quite far off to the side because we were close to the city limits and the Yellow Head was dark and busy.  In all our efforts to catch our flights on time we had forgotten our cell phone.  It was the beginning of January at 7pm, the three of us (we hoped if people saw 9 month old Blade in my arms they’d stop) stood outside to try and wave someone down. We were so lucky a little boy had to pee on the other side of the highway, Ronan ran across and they came over and let us keep warm in their truck while we waited for a tow truck.  The car cost a little more than a thousand dollars to fix…..now I was really beginning to feel a little fcked over in life.



Woe is me:(

I was thinking about that Christmas this afternoon while Carson slept next to me on the couch.  Everything that happened that Christmas was such a big deal, and probably resulted in a good, 3 month long depression.  I am a little embarrassed about how dramatic I was over that car (especially that old boat), the money that was gone for 48 hrs, and a water pump!?  I used to lose a lot of sleep at night because of the reactions I chose toward the circumstances of our life. 

Those days have long since passed, now, when I have an opportunity, I sleep like a log!

Carson is sick with strep throat, scarlet fever, and a urinary tract infection (cause there is always one of those). Seizures are a fairly regular part of Carson’s life but when he is sick his seizure threshold is lower and he seizes several times a day.  Ronan and I have strep as well, I am still feeling the itch from the scarlet fever rash.  There were very few outings during our Christmas holiday.  We had very little company and I slept a lot! It was nothing like I had planned (not that any year ever is;)



My poor little boy felt pretty tough over the holidays:(



 I have come a long way since the Blade’s first Christmas.  I have learned to appreciate an uneventful Christmas filled with traditions that travel. Our family will enjoy Christmas whether we are at home sick, with family in Saskatchewan, in a broken down car, or gathered around a hospital bed.  A few years ago I would have felt pretty hard done by after a Christmas like the one we just had.  I have learned to cope with worry, live with the unknown, and I try not to forget where we’ve come from! 

Me, if it weren't for the amazing friends and family who offer unconditional, unwavering love:)

Meagan gave me the softest pajamas for Christmas, I am not sure if it was her or her mom who picked them out, either way, they make me feel appreciated and cared for.  I dosed off comfortably between episodes of vomiting and seizures (the Bailey’s in my coffee helps to facilitate the dosing;). Carson is warm and still and seems to have an insatiable appetite for snuggles. Blade rocks out happily to Guitar Hero when he is not lying in a sea of Hot Wheels or challenging us to game of Cranium. The drapes are drawn, no school has been missed, no appointments or meetings have been cancelled. We just need to lay in our amazingly soft pj’s, in our warm house, full of great smells and fun games and toys and get well again. 



Blade rockin out!



Life has changed me so much in so many ways.  I look at photos of myself before I was a mother and I struggle to remember what it was like to be her.  Old photos used to make me sad, I longed to be reckless, fun, care-free, and unorganized like I was back then.

Crusing in the van on a rainy summer day:)

It took a long time to get comfortable with seizures, infections, constipation, medications, chest physio and g-tube feeding.  I didn’t think it was possible, but now, when I look at old photos I see something different; Not only was I care-free, with a head full of different dreams, I was a girl who lacked direction and desperately needed life to put me in my element because I was too thick to get there on my own!   

I have a different angle on life now;)