For the Greater Good of All Humanity

It has been a very hectic couple of months.  I have had so much going on, starting with the Western Canadian Conference on Leadership for Inclusive Education in Regina last month.  It was an incredible weekend of learning, inspiration, and networking (afforded to me by GRIT) topped off with some quality time with my MomJ just what a girl needs sometimes!  She stayed with me at my hotel,spoiled me and made Carson a new, black walking harness that doesn’t look like lederhosen! 

Following the conference in Regina I had some great conversations with the Principal of our school.  He challenged me with great questions and I think I may have challenged him a bit too.  We agreed to work together because we want the same thing, a full school that delivers great education to all students.  We are so fortunate to have a first year Principal who is a tremendous leader!  He is kind, enthusiastic, and open-minded and one thing I respect about him is his collaborative, transparent decision-making, it is nice to feel worthy of valuable education information that affects our children.  

One of the many great points I took away from the Regina conference is that inclusion is not a “special education program”, inclusion is for everyone.  If we keep advocating for only the inclusion of children with disabilities, inclusion will be viewed as a special education issue. Oddly enough, my next great opportunity to model inclusion in the community and school was just three doors down, Habitat for Humanity is building 48 condo units for families with at least 2 children!    

A couple of years ago I was opposed to Habitat for Humanity building all of these condo units in my neighborhood.  With good reason I might add, there are a lot of people crammed into this particular part of Edmonton.  I felt it could be considered elsewhere in all fairness.  Alas, our communities loud and strong voice was ignored and well….they’re here!  Large portions of the people in our neighborhood are not very happy about their arrival.  Many people are discriminating against the families on an economical basis. Truth be told, given the age of our neighborhood and the cost of housing here at the time of it’s conception, I would be surprised if some of the families complaining don’t make less than the maximum H4H income which is a $54,000.00.

I am not mad at the families that are moving into this community within our community (as it’s been called). I was opposed to aspects of the build related to population density. That fight is lost and it is behind me.  My children are excited about the fact that there will be at least (according to the CEO of H4H) 100 children moving in a few doors down!  It has been impressive to watch the volunteerism; everybody is working very hard to have 6 families moved in before Christmas.  I volunteered to represent our Parent Support Association and extend a welcome to our school and as a neighbor, to our community.  I attended a community league meeting and read a letter requesting a representative from the community league to partner with our school in welcoming the new families to our community.  Having a community within our community would be awkward…

At the beginning of the month our Principal invited Dave Colburn, School Board Trustee/Board Chair, Mark Ligouri the  Assistant Superintendent, Alfred Nikolai ,President & CEO of H4H as well as Armand Mercier Director of Family Services for H4H, a local church representative, and our community league representatives as guests to our school council meeting, in order for us to discuss learn more  about H4H and how we can help, as a community, to ensure the families feel welcome…..after all, inclusion is for everyone!!!

A mother from our school who works at the public library had cloth bags donated with information about the local library programs; our school  together with members of our community league, have filled the bags with t-shirts, school supplies, and information about our school and the community.  Today a small group of us got together at the school and baked dozens and dozens of cookies in order to give each family a tin of baking. 

This Saturday 6 of the 48 families will be given the keys to their new homes and we will be attending a welcoming ceremony that will be hosted in our school gymnasium.  I feel fantastic about how our school and community has pulled together to help embrace these families! 

This what inclusion is all about!!! 

GRIT Gratitude

I’m a little emotional when it comes to GRIT these days.  I must confess my love and appreciation for this organization is front and centre as constant fears arise in my mind about what life is going to be like next year, after Carson graduates from the program and we are no longer on “team yellow”. 

The first fearful concern involves living without a GRIT Developmental Specialist.  The job description does not capture the importance of the relationships these women have given to me in the past three years.  They have been my friend and they have loved my family.  They have seen me at my weakest and my strongest.  I have confided in them, trusted them and grown to love them.  When I reflect upon what each one has contributed to this experience I am overcome with emotion.  They take exemplary care of my children not just because they are well trained, but because they love and value my kids.  They model how to include. They inspire others to include. They will leave very large shoes to fill.

During Carson’s IPP meeting I realized that I am afraid, but I have the tools I need, thanks to the professionals at GRIT and the people they’ve introduced me too, who have always taken my input seriously.  I have been so empowered by their encouragement and expectations.  Higher expectations are such a gift!  I love them all for helping us to develop goals and achieve them.  Now we’re living life on purpose….with clarity and direction.  Growing old, as a parent of a child with a disability, was once a frightening and overwhelming thought because of a fear of the unknown and a lack of expectations.  Now, we have a vision, it’s beautiful and something to look forward too….not something to fear. 

I will attend as many workshops as I can this year, so I can move on from my role as a GRIT parent to a GRIT alumni parent without regrets.  I will also remain in touch with these amazing people who have helped to strengthen our family and brightened our futureJ We’re gonna be ok.  I’m excited for what’s yet to come! 

Inspiring Inclusive Futures

This week was supposed to be stuffed with great learning opportunities, but I was feeling sick on Tuesday and Wednesday.  I missed two workshops, Anxiety and Young Children and The Power of Pictures.  Fortunately, Carson's DS snagged me a copy of the workshop handouts and I was able to apply the relaxation techniques  in order to ease Meagan’s anxiety;)  I also missed an ERC presentation: The IPP, what every parent should know.  I blame the muffins we made on Monday morning with the kindergarten class.  I suspect there may have been a couple of extra ingredients added when I wasn’t looking;)  I did manage to attend GRIT’s Annual General meeting on Monday night, before the flu bugs took hold, and what and wonderful and inspiring evening that was! 

I was a little emotional when I got home; I felt an overwhelming sense of pride and gratitude.  After a beautiful Greek dinner and a glass of wine the meeting got started.   A new board member and a new baby were welcomed.  We said farewell to a couple of board members as well. Program goals, accomplishments, and budget were shared.  An inspiring panel of alumni parents shared about their journeys.  It means so much to hear from families who are walking this path a few miles ahead of me, they inspire me and remind me that I am not alone. 

I love GRIT because of the feeling I get when I’m there.  It is the kind of feeling that you can take home and hang onto for weeks!  It is a place where if you look, there is a dream coming true around every corner it seems!  GRIT aims to empower families and…… Boy Howdy!  Do they ever!  On Monday night GRIT’s new retractable banners with their new logo and tag line were unveiled.

The best part of the evening for me was seeing my friend’s dream for her daughters come true!  My friend has two beautiful girls.  Her youngest daughter is adorable and lives with Down syndrome and her older daughter is also adorable and is a sibling of a child with a disability.  We’ve become friends over this common worry for our “other” children.  She has spoken loud and clear that she loves the kindness and attention that people seem to go out of their way to show her youngest daughter, but she has two daughters and they both deserve the spotlight!  GRIT has helped this mom to give the gift of equal spotlight to both of her dollies; their faces are front and centre on the new banner!   I should also add that our Carson’s face fills some space on the banner as well.  What a great honor to share with a friend!  Thanks again GRIT! 

Inclusion Is For Everyone:)

Dear Friends and Strangers,

Thank you for kind smiles, and interest in me.  Thank you for taking the time to stop, kneel down, look into my eyes and say hello to me.  Thank you for placing your hand over mine so I can take part in the fun.  Thank you for making sure I always feel welcome and safe.  Thank you for accepting me for who I am….loud noises and all!  Thank you for respecting my dignity.  Thank you for your strength to hold me up so I can pick up toys and clean the floor, I don’t want to have to see my friends do all the work!  Thank you for prayers and encouragement.  Thank you for believing in my value as a member of my community.  Thank you for pushing my chair and for recording messages on my big button.  Thank you for carrying me up the stairs when the elevator’s broken.  Thank you for learning to sign and for listening to my eyes.  Thank you for the songs you sing.  Thank you for the hugs, I’m not sure who enjoys them more…me or you;)  Thank you for ramps and a parking stall.  Thank you for waiting. Thank you for working so hard to make me a smile.  Thank you for accessible playgrounds!  Thank you for playing with me and learning with me and growing with me, because I love it all!!

Love,

Carson

I believe that Carson’s eyes, smiles and affections each day demonstrate gratitude.  He is a very blessed little boy and this shows in his subtle response to the world.   He is never scolded and often praised.  He receives soft looks of approval everywhere we go.  He feels love radiate from strangers.  I wish Blade and Meagan could experience the world through Carson’s eyes….I wish all kids could.

Unfortunately, where I see the greatest lack of inclusion is with children who live with invisible issues.  Many children in our community live with disorders such as Autism and ADHD and many are living in extremely stressed out environments as families navigate transitions, like death, debt, and divorce.   These kids deserve compassion and understanding the same way Carson does.  The last thing they need is another scolding, they endure far too much criticism and not nearly enough praise.  Many adults do not have the patients to even be kind to them.  To add to that, their parents will carry the burden of the opinions and advice from countless people, most of which assume that the only reason for undesirable behavior is inadequate parenting.  This has a huge impact on the self-esteem of the parent; the most influential model in a child’s life…..feels like a sac of crap.

Some things I’ve learned from Blade include: Behavior is communication, he needs to know that you hear what he is trying to say.  He needs 4:1 compliments vs. criticism.  When I tell him he is a good boy, he is acts like a good boy.  When I am cranky, so is he.  He is very sensitive to his environment, if you are only tolerating him, he senses that, loses confidence in himself, and acts out….he needs to feel accepted rather than tolerated.  Don’t we all? 

Focus on the Solution Not the Problem

Give me Blog space and look out!  It seems I have the Opinion Flu and can’t stop from barfing the information in my head onto this blog.  Right now I’m feeling some guilt, it's Friday evening, Blade is playing video games and Carson is slobbering on the mirror in his bedroom.  It’s not the video games that evoke the guilt, because Blade earned his time on the console of his choice today by earning stars on his chart.  But Carson is literally standing and slobbering on his mirror, I have been to him three times to try and draw his attention to spinning toys, and his switch and bubble lamp…no go, slobbering on the mirror floats this cat's boat right now.  And you know what?  Most of the time, I accept that and enjoy time for me, while he "stims" knowing that I do plenty in order to deserve this time.   I have begun to figure out my place in his world, and I am developing confidence in my role as his mom.  But there are moments still, where the guilt tickles my belly and I just can’t enjoy peace.

Confidence is really where it’s at!  It seems to me that a person with high self-esteem can accomplish anything!  Unfortunately, I hear a lot of teacher’s doubt their ability to teach well in an inclusive setting.  They feel as if they are lacking the education and expertise to meet the needs of all their students if a severely disable child is enrolled in their classroom, they point out their lack of a special education degree.  It's not as complicated as obtaining a degree...it is a matter of learning from schools and communities who are already inclusion leaders.

What Does Inclusion Mean to Me?

“I don’t know if I believe in inclusion”.  Yes, those words actually did come out of MY mouth!  I had a conversation with my neighbor one summer day,  just weeks following the birth of Carson.  I had shared with her that we had concerns over the amount of fluid on our new baby’s brain.  Looking on the bright side, I noted that we were fortunate to be living in a city with specialized hospital care and education.  I explained that after having grown up in rural Saskatchewan, I was feeling grateful for all the special services Alberta has to offer.  My neighbor then volunteered that her daughter attended our community public school and that they "let" special needs kids in too.  She shared that she believed it was not healthy to expose her daughter to the behaviors these kids often exhibited and that they were certainly a distraction for her….I agreed.

I have come a long way since that day and I think of that conversation often. I have had similar conversations several times since then with numerous people, often strangers in the medical office, parents at the park,  or sometimes friends I’ve made from my children’s school, and education professionals.  My position on the matter has experienced an informed flip.  I have had a change of mind and more importantly, a change of heart.  I am now eager to acquire the knowledge, skills, and confidence I need in order to help people like my neighbor see that children like mine can be a beautiful asset to their lives and we can all learn to accept diversity. 



We have formed real relationships within our community because the boys are attending our public school.  We are told all the time that Carson’s friends talk about him and they are eager to be his,”buddy for the day”!  When I see his friends and their parents stop and make an effort to connect with him, I am reminded that inclusion is the right thing to do.  He is being noticed and having natural life experiences, just as he should.  Research strongly supports quality inclusion.  Quality inclusion requires doing things differently than they've been done in the past. 

Advocating is a practice in patience and determination.  I won’t stop, I have a vision, it is my dream to live and work in an inclusive community and  to see our community school become a leader in educational advancements . I really want to help my children make a difference, because they can!  It is in my heart, you can’t tell me it can’t be done because we ARE doing it, with the help of a whole community of people who feel like they are benefitting too!  We have a long way to go to reach quality, but we do have a start....there seems to be a lot of heart! 

 Benefits of Inclusion

The Life I Always Dreamed of

I’ve wanted to be a mother and a wife as far back as my memory can reach.  I knew that motherhood would be the most rewarding experience of my life but I never could have imagined what I stood to learn from this experience!  My husband and I have been blessed with three beauties whose gifts amaze and challenge us!

Our daughter Meagan was born to Ronan and Kim in January 1996 and she has impressed me and made me very proud since the first time I heard her speak on the phone when she was three years old.  She is academically gifted and that was clear from the start.  She’s a good kid too, she is almost 15 now and she still behaves as though she loves and respects us (most of the time;).  She sets high goals and works hard to achieve them.  Sometimes she puts too much pressure on herself, thinks too much, and fills herself with anxiety.  We try to be careful to remember that she is young, but it's hard sometimes because she is capable of so much responsibility, not to mention, she is an amazing big sister!  Being a step parent isn’t something I dreamt of (hard to imagine meeting your daughter in McDonalds when she is five years old while having lunch with her mother (and husband’s ex-girlfriend)) But I do feel so incredibly blessed to be apart of raising her.

 

Ronan and I welcomed Blade into the world in March 2003.  It was during the time when Blade was a baby that I thought I had the world by the balls.  I was quite sure I was proving that parenting done carefully, would produce perfect results.  I am teased to this day for remarking that Blade was very advanced for his age…when he was five weeks old.  As funny as it was at that time it seems that Blade, not unlike his sister, is very smart.  He reached all of his milestones very early, he is reading well above grade level and retains facts about science and math that are well beyond that of most grade two students.  When Blade was three it was fairly clear that along with extreme smarts he was blessed with a ton of energy.  Blade  is responsible for a complete change in my thinking in regards to people’s behavior.  I now realize that the omega 3’s, vitamins, and folic acid while I was pregnant and the best laid parenting plan was not going to stop what was genetically predetermined; Blade lives with ADHD.  In spite of all his gifts, he struggles a great deal with executive functioning.  It has been difficult for him in the classroom since preschool.  I have had to be very involved in Blade’s education in order ensure he continues to be included in a regular classroom at our community school and that he has the best chance at success.  Blade is destined for greatness.  He’s an orchid amongst dandelions and requires greenhouse care (it’s an interesting hypothesis at least).

In June of 2005 Carson was born.  Carson came to us with a chromosomal uniqueness that has resulted in a seemingly fragile little boy, or so we thought;)  We have seen Carson through some very scary health problems including status seizures and respiratory issues that resulted in frequent hospital stays including the intensive care unit.  There were times we wondered how much his little body could take.  I didn’t dare imagine his future for fear that there wouldn’t be one.  Carson has surprised and impressed us so much with his determination, bravery, strength, kindness, and trust.  He has already been making a difference in the lives of those who know him and even in the lives of some who don’t.  Thanks to the help of the GRIT program our family is learning the joy and normalcy of living an inclusive life.  Carson is being beautifully included at our community school with the help of our GRIT team.  Ronan and I are doing all we can to ensure that Carson feels the sense and reality of belonging.  From Carson I have learned that I am far more capable than I ever gave myself credit for. 

It is not exactly as I pictured it...it is even better!