My Mother and My Grandmothers...

We have a beautiful, interdependent relationship; although I lost my Grandma Cowan when I was 14, she, my Grandma Stevenson, and my Mom play critical roles in shaping who I am today....I think of them everyday, not just on Mother’s Day.  Now that I too am a mother, I am constantly gaining new understanding and respect for them all. 

Grandma Cowan comes to my mind frequently in my day to day tasks.  I spent a lot of time with her, learning her role; she baked with me, she made Grandpa lunch with me, she let me do dishes and fold the laundry, long before I could do it well.  She let me stay overnight all the time and she always let me pick a nightie out of her drawer.  She cuddled me and told me about my family and my history, and she danced the Highland fling to make me laugh!

She taught me this song:

Old Lady Dire, she shit by the fire.

The fire was too hot, so shit in the pot,

The pot was to round, so she shit on the ground.

The ground was too flat, so she shit on the cat.

And the cat ran away with shit on his back! 

When I started going through the teen years, and I was horrible and mean and hateful to everyone around me, she seemed to be ok with who I was, no matter what.  Mom couldn’t be that person, she needed to piss me off, set me straight and help me to learn right from wrong (she had her work cut out for her;).  My Grandma was my favorite person to be with back then.  I would often choose her over my friends; we’d watch soaps, drink tea, and smoke.  She treated me much older than I was, and listened to me in a way that made me feel important. The only time in my life I remember her being angry with me, is when I went to a friend’s house and didn’t tell her.  She yelled at me and then we cried. She felt bad for yelling, I felt bad for making her worry so much.

I am sure some people would think poorly of the relationship we had, (I'm sure there were times my Mom was not happy with her MIL) I am so glad that she balanced her concerns with respect for the love we had for each other.  I am like my Grandma Cowan in a lot of ways and I am proud of the traits I carried on.  I have never hurt so badly, as I did the day I lost her.

My Grandma Stevenson....anyone who knows me, knows of the undying love I have for her!  As far back as my memory can reach, I have lively, fun memories of my Grandma.  I can still feel the excitement build in my belly when I recall waiting for her to come kiss my brother and me good night.  She would come down the hall snorting and growling, to signal the Tickle Monster was on her way!  She was merciless, chasing us and capturing us to chew on our necks and kissing us a thousand times (way to wind us down for sleep G’ma;)  

She lives a life that is steeped in tradition and community; I have always admired that about her.  I feel a sense of pride telling people I descend from her because she is so fun-loving, generous with her time, friendship, and laughter, that when ever I mention her name, I make a new friend. 

Grandma Stevenson makes me feel special each and every time I talk to her.  I know in my life, there have been times when I’ve disappointed her and worried her, but I also know that she has never stopped loving me and cheering for me.  She wears her emotions on her sleeve, and seeing her pride in me, is something I’ve grown to need.  Watching her love my Grandpa makes my heart swell:)  She is an understanding ear, always there for me to call.  I plan to carry on her traditions and her zest for life, always making her proud!

My Mama is my strength.  I have never been meaner to anyone in the world than her, yet, she has NEVER wavered in her love for me.  My mom quit drinking when I was 9 yrs old, she has never had another drink since then, (and I am very proud of that fact).  She has shown me the human capacity to change and grow.  She has taught me important lessons in coping, recovery, and survival by living the words she speaks.  She helped me to understand the value of trust and forgiveness.  She has given me the gift of true, unconditional love.  She doesn’t always agree with me, and she doesn’t pretend she does, but she always supports me regardless. 

Now that I’m a mom, my mama’s role has expanded; she extends the same love and support to my babies.  My cousin once said, “Watching my mom love my child is like getting a hug from her myself” I think of that often, because it is so true!  If you know my Mom, you know the pride she has for all three of her Grandbabies....she supports their dreams, and cheers them on across the miles, she and Dad have built their home around us too!  The sacrifices she has made for me.....MAN!  THANKS MOM!

Happy Mothers Day to you three precious ladies, I will always love you!  I hope to pass the best of each of you onto each of my three, then world will be a better place:)  

Building the Capacity for Positive, Meaningful, Parental Involvement...Let’s Start with Fair Expectations

I love being involved in my children’s education the way that I am.  I see the opportunities I take advantage of, as a way of focusing on the positive, and way for me to cope with what is.  My husband happily supports my passion because he views my time away at meetings, conferences, and workshops, as free education and training for my job as a mother.  I have made a commitment to myself to be an advocate because I love it and I need it.

I am meeting new people all the time and I am getting to know other religions, cultures, and people with diverse abilities, I’m convinced!  We all want love and belonging, we all want to feel valued, and we all want to feel safe and successful. 

Lately, I have noticed that people have stopped telling me inclusion doesn’t work; now what I hear is that inclusion can only work when parents are involved like I am.  No brag, just fact folks....I am really into this shit!  I plan to take this bus to the end!  I am committed to social justice for all!!  To expect all parents who have a vision for inclusion, to feel driven  to work countless hours and endure more stress and challenges a midst their already incredibly stress-filled lives, is very unfair.  Think of a single mom who may be new to our country, or a loving foster mother who is already feeling stretched too thin, for example.

 All children have the right to receive the same considerations as my child....especially if their families are overwhelmed or in crisis!  Yet it seems that they only way to make things happen within the system for a child, is to be a tireless, posistive volunteer and a fierce advocate (and sadly but truthfully, 35 yr old, middle class, white woman doesn’t hurt either).  I hope that I am able to use my strengths (and society's weaknesses) to open doors, and with grace, hold them open for others behind me, just as others have graciously done for me.

I think it is very important for parents to be involved when they can be.  I also believe that it is very important to build the capacity within the system to support families when they need it, whether they understand the “proper channels” to follow or not.  An inclusive education model must not rest on the condition that the parents are willing to “work for the school” because many parents can’t for many reasons. 

The expectations for the role of the parent need to be flexible and supportive.  More and more parents are beginning to spend more and more time at our school.  Why?  It’s because we feel welcome.  It is not unusual to see a cluster of moms enter a home across from the school for tea after they drop their kids off, or a few parents hanging out in the staff room having coffee with one another.  It is wonderful to have so many present, active volunteers and to be a part of developing life- long friendships.

Our Principal has talked about creating a Parent Resource room at our school I think it is a great idea!  I was doing some research I think next week, I’m going to talk to him about calling it the Parent/Teacher Resource Room, and inviting space, with coffee, furniture, flowers, books, and a computer where parents and teachers can feel as though we are really all in this together!

Relational Leadership is about process.

The process component of the Relational Leadership Model means that individuals interact with others and that leaders and other participants work together to accomplish change. The process creates energy, synergy, and momentum.

(McMahon, 2007)

We're Gonna Be Alright...Right? Right.

I try to be positive, I’m not always successful.  I have been feeling rather shitty lately...heart broken actually.  You’d think that by now, we would be used to unexpected bumps in the road.  I actually got very comfortable with the lack of medical equipment, doctor appointments, and tests.  The education world is more fun to advocate within.  I consider myself a very capable advocate in the medical world and I feel confident that I do a good job of making educated decisions regarding Carson’s health care, the same way I do for his education, but I do not share the same passion and positive feelings in health care that I do for education.  Dreaming about educating our children to adulthood has been so uplifting; focusing on a vision for their futures has been so relieving, a great break from choices about surgeries, invasive testing, medication changes, and life sustaining efforts.

Lately, Carson has me worried again.  His seizures have changed; increasing meds seems only to contribute to decreased mobility and a lack of desire to participate in life.  His breathing patterns have changed, yet recent visits to the doctor reveled clear lungs, nose and throat.  Carson’s head circumference has decreased from the 50^th to the 40^th percentile over the past year and a half (this is down from the 90^th at birth), and he has another urinary tract infection that he is on antibiotics for.  He has an EEG, a sedated MRI, a VCUG, and a sedated DMSA renal scan scheduled, as well as an upcoming visit to see his Neurologist.  I am so happy to have everything come together so quickly, it has only been a few weeks since I began to get concerned.  I love our Pediatrician; she is always (for 8 years) so responsive to my concerns, waiting for tests and results isn’t easy...I dread it.



It is hard not to be afraid of times like these.

Last night, Blade told me that he misses “happy mommy”.  That’s a tough one to hear,  I wish I could tell you that in times of stress, I am able to keep on “acting as if until it is” but the truth is, sometimes all I can do is say ”AS IF!”  I am incredibly grateful that my little boy is brave enough to be so honest with me, as hard as it is to hear that from him, he is probably the best person to motivate me, to get off the pity pot.

This afternoon when I took Blade his lunch, I had a conversation with a beautiful woman who shared her heart with me.  She told me that I remind her of her, 13 yrs ago when she lost her little girl after 7 long months in the hospital.  Everyone around her told her she was always smiling and happy and so strong, and that is how she sees me.

This is where I choose to thank God for the messages I needed to help me find my way again.  I woke up this morning vowing to be “happy mommy”, I wasn’t sure how, but I resolved to give it a damn good effort.  When I heard that woman express her understanding of the place I’m in, and compare me to her, I was reminded that we will get through this!  This woman is so beautiful, so loving, and so generous.  There is no hint of anger or resentment and she has survived the loss of her precious little girl.  Her heart is still whole and she is still strong, she still smiles...she is still a wonderful mother to her 2 other children.

I have had a good cry, and now I am ready to pull my big girl panties up!  I will be grateful for the break we have had from this kind of worry, it allowed me to focus on school and community which has widened our circle of support considerably.  It also gave me time to have the clarity to develop a strong, new vision for Carson’s future...  

                                                           Our Vision for Carson

It is our vision to see Carson surrounded by great people with positive assumptions.  Through peer support and the use of assistive technology, Carson will participate with his classmates in many dynamic learning opportunities and age-appropriate experiences.  He will have regular opportunities to build and strengthen relationships with his peers.  He will form strong bonds, just like Meagan and Blade.  He will find his very best friend and a passion all his own.  He will feel confident and safe through the challenges that life offers.

This leg of our journey will conclude with our youngest child taking his turn to cross the stage.  I imagine he’ll walk fast, with his head a few inches before his feet…straight for the diploma and a man hug:) then, he’ll take his moment in the spotlight, with his arms out, and his head back, while friends and family hoot and holler!  With his unruly hair peeking out from his grad cap, and his gown just a little too long, he’ll reach up and throw his hat high in the air!  Then, like most Graduates, he will go party with his friends and his big brother, while we stay back, and worry about them getting home safely.

Ronan and I will always play a huge role in our children’s lives; they will keep us close and count on us.  We will instill a love of learning and they will never stop!

No amount of worry can rob me of this vision....it's out there!

Sometimes It Is Hard to Stay Cool

I wear these two hats, Mom and Advocate.  I feel an intense passion for both.  Sometimes, I find it very difficult to notice when I change my own hat!  One minute, I can be sitting at the train station, singing/signing a song to my son while we wait for a train, and the next thing I know, I am embroiled in a conversation about inclusion! 

These frequent conversations happen rather naturally, usually when someone asks me questions about my children such as, “So, do you know exactly what to expect for Carson when he’s older?”, and when comments are made to me (or within my earshot) about “those behavior kids”.  I think it is best to not make any assumptions about Carson’s future or about “those behavior kids”, because those assumptions can lead to resentment, low expectations and segregation (just to name a few)

I recently signed up for a webinar series, the Fundamentals of Inclusive Education through the University of New Hampshire, as part of a research study (thanks for pointing this out Kristin;). So far I have done one pre-test, read 20 pages, and watched a 90 minute webinar (12 or 13 more to go) and I already have already acquired some more powerful language to help me to articulate my rational for advocating for inclusion for my children.... for all children.

 "The least dangerous assumption" ....There it is!  I wish my keypad had music notes;)

I want everyone to assume that Carson can understand them, even if it doesn’t appear that way.  What’s the harm in assuming he understands, even if he lacks the ability to communication and control over his body enough to prove it, at this time?  Assuming he understands will help to protect him from inappropriate conversations and neglect that can occur when people dangerously assume he can not understand them (for example).  

Could assuming that he would love to play Follow the Leader with a bunch of other 5 and 6 yr olds, be harmful?

I will embed this perspective in my brain and make decisions as a mother and an advocate that reflects this, because I believe it is the least harmful approach.  It is so easy to get confused, there is so much advice, and such a variety of perspectives.  Some people are truly inspired to help us along on our journey, others are on there own agenda (to which they are entitled).  My job is to decipher who to trust.

I am a trusting individual but, not just of others, I’ve learned to trust myself.  One very important thing that advocating has taught me, is that a university degree does not equal a higher understanding of my child than I have.  Through Carson and Blade’s Doctors, Nurses, Teachers, and Therapists, and their confidence in me, I’ve learned that educated people are capable of making honest mistakes, just like I am.  When Carson was 3 years old I dug deeper than I ever thought possible to forgive a life threatening mistake in the hospital.  While the mistake was happening, there was a voice inside me that knew something was wrong, but I allowed a first year residents’ education, intimidate me into silence... the result, a swarm of doctors running with my baby on a bed to the PICU.  I forgave her, she learned, I learned, that’s life.  SCARY!  Ever since then, I trust my inside voice, and let it out.... just in case I’m right.  What is the harm in that?  I’m wrong I may feel embarrassed, but maybe I’m right....

I don't mind looking foolish or over-protective as much anymore.

Just as I hope that people act as if Carson can understand, I hope that people understand, that Blade does not “try to be disruptive”.  There is danger in assuming any person's motives for any one behavior; if a person believes that Blade enjoys behaving in an out-of-control manner, or that he decided to do something mean,  it would be difficult to stop from feeling resentment towards him and judgement toward his family.  Even unspoken resentment can seriously damage a relationship and impair self-esteem.  The best way to avoid the resentment, is to have a less harmful assumption of his motives in the first place.  Instead, assume (if you must) that he is having a difficult time coping with life.  Assume (if you must) that he is hurting inside.  Assume (if you must) that he is hungry!  Those types of assumptions will provoke compassion and responsiveness, which is exactly what he needs. 

This enlightenment has caused me to review my son’s coding assessments carefully, and to seriously consider the difference between diagnosis and assumption.  I owe it to my children to edit out, all of the harmful assumptions in their lives which have the potential to limit them.

                       Never let anyone make you doubt your dreams!

My Voice Will Be Heard Because I am Involved

In my last post I wrote about attending the district’s stakeholder’s consultation regarding the new draft Vision, Mission, Beliefs and Values and Priorities for the next three years.  There were two ways offered to provide input, through an online questionnaire or at an in-person consultation with Trustees and other stakeholders.  In total, 285 individuals provided input (A small group, considering the district serves more than 80,000 students and their families and employs approximately 7,000+ staff to support them).   

Below is the Draft we were asked to consult on.

Draft Vision, Mission, Beliefs and 2011-2014 District Priorities

Presented at Public Board January 25, 2011

Our Vision

That every student completes high school* and demonstrates the competencies** and

character necessary to be ethical citizens, engaged thinkers and contributing members of an

inclusive and democratic society.

Our Mission

To provide learning environments and leadership necessary to support all students to achieve

success in a complex and changing world.

Our Beliefs and Values

• Public education underpins a successful future.

• Being responsive to the educational needs of the broader community is the foundation of

our District’s approach to education.

• All students can succeed in their education.

• Diverse opportunities give students different paths to achieve academic and social

success.

• Access to educational opportunities should be fair and reasonable.

• Students, parents, staff, the Board of Trustees, and community members share

responsibility and accountability for results.

􀁹 Our learning environments should be:

o safe

o healthy and health-promoting

o welcoming and respectful

o learner-centered

o responsive and flexible

o creative and innovative

o environmentally sustainable

Our District’s Priorities (2011-2014)

1. Emphasize literacy, numeracy, critical thinking and innovation for all of our learners.

2. Instill in each student the attributes of healthy living and ethical citizenship.

3. Enable inclusive*** learning environments where every student feels welcome and safe.

4. Provide a collaborative, healthy and innovative workplace that recognizes individual

contributions and supports opportunities for growth and professional development.

On Tuesday, March 8^th at 6:00pm there will be a public school board meeting, the Proposed Vision, Mission, and 2011-2014 District Priority recommendations will be presented and voted on.  The changes made most certainly reflect to me, that the voices of the parents, students and the community were heard.

Vision, Mission, and 2011-2014 District Priorities

Vision

All students will learn to their full potential and develop the ability, passion, and imagination

to pursue their dreams and contribute to their community.

Mission

We work with families and community partners to provide safe, healthy, diverse, and

equitable learning experiences that engage students to achieve their full potential in an

increasingly interdependent world.

District Priorities 2011-2014

1. Provide supports and programs that enable all students to complete high school.

2. Deepen students’ understanding of equity and empathy as key citizenship traits.

3. Ensure all students and their families are welcomed, respected, accepted, and

supported in every school.

4. Promote health and wellness for all students and staff.

5. Listen to staff, honour their contributions, and support their opportunities for growth

and professional development.

I will be attending the public board meeting on Tuesday night.  Whether I do it from my cozy house via webcast or in person is still yet to be decided, since there is an option, Ronan’s work schedule will be the determining factor.

In addition to having my voice heard at that consultation, I was afforded the opportunity to make a connection with one of our Trustees, Christopher Spencer.  After listening in on our table’s discussions, he passed me his email address.  I wasted no time; I emailed him within a couple of days.  I told him about my passion for inclusion and about the learning opportunities afforded to me by the GRIT program.  I expressed an interest in becoming involved, at a district level, with all things inclusion (I was much more long winded than that, but that sums it up;), a few days following that, I received an email back, Trustee Spencer had forwarded my email onto two other Trustees and the Managing Director of Consulting Services, John Edey.  Hmmmm…what could come of this?

On Valentine’s Day, I received an email that would have my feet leave the floor for the rest of the week!  It was from John Edey, it explained that the Board of Trustees at Edmonton Public Schools has formed a Special Needs Task Force consisting of three Trustees.  The Terms of Reference called for an Advisory Committee of district staff and parent/community partners.  The responsibilities of the advisory committee will be to advise the trustees on the Task Force regarding:

 ·       the process for gathering input

·       the interpretation of the information gathered

·       implications and feedback regarding possible recommendations

On behalf of Trustee Cheryl Johner (Task Force chair), Trustee Leslie Cleary, and Trustee Christopher Spencer, Mr. Edey extended an invitation for me to join the Advisory Committee!  I was honored to be asked and I wasted no time accepting the offer.

This is where I must acknowledge my incredibly supportive husband, each of the 3 meeting that have been scheduled are 2-2.5hrs long, during the weekday.  This means that I will need to rely on Ronan to work from home and take care of getting the boys to school and collecting Carson afterward.  He is so proud of me and it shows in the way he never bitches about the lousy pay I receive for my commitments, in fact, he views my experiences as free education and encourages and accommodates me all the time.  (In case anyone wondering where he fits into all of this…all of this, would not happen if not for his support;)



What he lacks in sophistication, he makes up for with his dependable sense of humor;)

I attended the first Advisory Committee meeting on February 22^nd.  This is a truly empowering experience, it is an opportunity for me to collaborate and build relationships amongst a group of aprx. 40 people who are considered to be incredibly knowledgeable in the in area of inclusive education.

All of my friends, especially those of you who teach, or who have children in an Edmonton Public School, I urge you to have your voice heard, inclusion is for ALL students.

Special Needs Task Force Consultation

The Board of Trustees invites interested parents and community partners to come together to discuss how we can help students thrive in an inclusive education system. Trustees are looking forward to hearing different perspectives and using that feedback to ensure every student can reach their full potential.

The dates for parent focus groups are:

• Thursday, March 10, 7 to 9 p.m. (Quote #LEAD018-01)
• Wednesday, March 16, 7 to 9 p.m. (Quote #LEAD018-02)

Please join us and be part of this important work. To register, call 780-429-8050 or email consultingservices@epsb.ca.

Both sessions will be held at the Centre for Education, One Kingsway, Edmonton. Underground parking is available.

John Edey, Managing Director
Consulting Services
780-429-8598

Our voices are being heard, we can affect a change, don’t let anyone make you think it’s not worth a try;)

What Kind of Choice Is It, Really?

My children are blessed; they are welcome and included at our community school.  Our Principal is doing everything he can to support our teachers, and our teacher’s are learning and growing in order to meet the challenges that they face, as the school district moves our current system toward a more inclusive model. 

The more I speak up about the benefits of inclusion, the more stories I hear from frustrated parents who feel as if their schools aren’t even trying to include their child.  Which would stand to reason, we have been telling teacher’s for years that you need special training and expensive, fancy equipment in order to educate these kids… that frame of thinking will not be undone overnight.  Parent’s vision and input is not welcome in every school in our district, therefore, neither are their children.  The district is doing everything they can to provide the necessary supports for our school and teachers.  It is very frustrating and difficult for families to understand that it can be done at our school, but not theirs.

Our school district prides itself for it’s commitment to being “A District of Choice”. 

Edmonton Public School Philosophy:

Our diverse programs of study support our mission statement by giving parents and students different paths to achieve academic and personal success. Choice is the foundation of our district's approach to education. Edmonton Public Schools is recognized internationally for offering the curriculum in ways that complement the unique backgrounds and talents of our students. Alternative programs are developed  programs wherever it will support and foster student achievement.
We believe that the "one size fits all" model of education is no longer appropriate in today's rapidly evolving society. Children have different learning styles and some achieve better in certain environments. Edmonton Public Schools is making a strong statement about our ability to address and meet the changing needs of students.
Implemented more than two decades ago, Edmonton Public Schools created its revolutionary open boundary system. This allows parents and students to pursue educational programming study in a learning environment of their choice.

I believe that this philosophy was created by many people, who were no less passionate or well-intended than I.  Sometimes it takes time to notice that something isn’t working the way it was intended to work.  Because I believe in many cases, choice serves the school more than the parent or the child.
In the District Overview it states under special education programming that:

Edmonton Public Schools is committed to providing strong programming choices for students who have special education needs. A wide range of programming options and supports are offered. Inclusive programming in the community school is the first option considered and discussed with parents. Parents of students who meet special education eligibility may also choose programming provided in a number of district centre and specialized school programs. Depending on student needs, programming is supported through specialized assessment, consultation or other district services. With input from parents, staff develop an Individualized Program Plan (IPP) for each student identified as having special education needs. This plan outlines priority goals and objectives, guides programming, monitors and communicates student growth. The district supports students with special education needs to gain the knowledge, skills and self confidence they need to be successful in school and life
Parents are encouraged to contact their child's community school principal for information, support and advice.

I can be persuaded into believing that being a ‘district of choice’ is something to be proud of…..when those choices are quality, equitable,  choices that are being made by informed parents, in the best interest of the children and their family (rather than being recommended by persuasive Principals). 

If our district is going to claim that, ‘Inclusive programming in the community school is the first option considered and discussed with parents’, it would be fair to expect the best inclusive practices to be embedded in every school in our district, in order to ensure that every parent has access to quality educational choices for their child and their family. Crappy inclusion should not be an option for ANY childJ

Last night, my BFF and co-crusader Crystal and I, took advantage of an invitation to have our voices and opinions heard at the District level at a stakeholders consultation.  The Board has developed new draft Vision, Mission, Beliefs and Values and Priorities for the next three years and invited interested members of the public to provide their input.  There were two ways offered to provide input, through an online questionnaire or at an in-person consultation with Trustees and other stakeholders.

I was a little nervous as we pulled into the parking garage at the Centre for Education; I wasn’t sure what I was getting myself into.  As it turns out, I am so glad to have chosen the in-person option, hearing the different perspectives helped me to provide my input with more clarity, depth and confidence than I would have on-line.  There was very engaging conversation, and as the Trustees were sitting in, I felt like I was being heard and that my opinion was valued.  I left feeling proud of what I had to offer to the conversation and with a satisfied feeling, for 'having the courage to change the things I can'.

My overall feeling is that the new Vision, Mission, Beliefs and Values and Priorities Documents will be a better reflect the changing needs of our students and communities (provided a few changes are made;).  I look forward to seeing the revised draft following the stakeholder consultation.  

 

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