How de-cluttering helped heal

My first experience with de-cluttering a room was when Hannah was about eight years old.  Only diagnosed with autism for two years we were thick in the throes of ABA with its intense therapy plan.  We had a toy room that was then doubling as a therapy room.  With its shelves filled with toys that Emily had played with, new toys purchased in anticipation that ‘this. will. be. the. toy. to. unlock. her’ and a sheet covering the intricate area rug so she would not be upset by its pattern.  And when I say ‘upset’ I mean debilitating freak out.  Who doesn’t have a toy room like this …?

With Hannah’s severe autism her symptoms included not playing appropriately with toys and lack of imagination play.  She would maybe use parts of toys to either stack, pile or tap.

It was seemingly impossible to rid the room of any toys.  “What if she one day plays with this?”  “What if one day we need this for her program?”  What if.  One day.  Phrases that can be debilitating in cleaning.  It was becoming more and more apparent that these were more than just toys on a shelf.  These were hopes and these were massive dreams that I was holding on to tightly and desperately.  Every time I viewed the room I was haunted by the failure of this room.  And it hurt.  And it was crippling.

I suppose the practical side of me took over one day and I was able to pull up my big girl gitch (by now they have been pulled so high they are equivalent to a big girl thong) and asked for help from my Aunt and my Mom.  They came over for the day to assist in the task.  Make this toy room/therapy room appropriate for Hannah’s needs.  Appropriate.  No stuff disguised as dreams.

I was afraid I would feel pressure to toss items that I would want to keep however that is not how the day went.  We started by emptying out the whole room.  One big pile.  Then we made sub-piles.  One for “Keep”, one for “Remove from premises” and one for “I’m not sure”.  The “I’m not sure” pile gave me permission to take a moment to either really think about the object or to grieve that this toy will not be played with.  Appropriately.

As we categorized more and more into our sub-piles it became easier.  By the end of the de-cluttering day the “I’m not sure” pile was easier to be placed into “Keep” or “Remove” and with a clear head I could practically and unemotionally decide.  Empowering-o-rama.  I owned the items.  They (and there fake hopes and dreams) did not own me.  The toy room/therapy room was re-organized with items that made sense and it looked wonderful. Aside from the sheet that covered the intricate patterned area rug.  I was proud and grateful for the day.

Fast forward twelve years.  So much has changed.  Different home and different therapy room.  Room filled with papers, data, chachki’s used to teach, token boards, toys, notes on the wall to remind tutors and more.  But our wonderful formal ABA years were over.  For awhile now.  But the room stayed as it was.  Like a mausoleum – an ode to ABA – do not disturb.  “Maybe one day we’ll get another consultant”.  “Maybe one day I’ll work more with her”.  Maybe.  One day.  Mess.  Debilitating. Crippling.

Pulled up those big girl thongs.  Once again.  This time alone and not in one day.  Over time.  But same technique.  It was difficult.  Seeing all the old tutor notes dating back to her first tutors.  Remembering the group clinic meetings – the highs and the lows.  Remembering how Hannah either hammed it up big time to show off or she was a complete shithead.  (Usually she was uber-charming).

Again separating myself from the years of work.  Lightening up the space and lightening up my soul.  With each item placed in the appropriate pile it was accompanied with tears or smiles.  And pride.  Proud of all the work we all did for her.  She would not be who she is without the ‘brain stretching’ we insisted on through ABA.

The room was complete.  Items brought to the local MCC (our thrift store), recycle, shredder and the garbage.  It was empty and it felt so good!  So much better than unusable crap that weighed on my eyes and zapped energy from me each time I looked at it (yes I am a tad dramatic).

Now what to do with this empty room?  I had to think about this one when it came to me.  My Grandma passed away this past Spring and it left a huge hole in my life.  Needless to say she was very special to me.  I had wonderful memories of her from a young child to the day she passed.  One thing that reminds me of her are red geraniums.  Grandma was classy and always had the beautiful red geraniums on her front porch.  When we got to visit their place we played outside and I always noted the red geraniums.  I liked to take a petal or two off and was mesmerized how they left colour on the sideway.  Long story short – red geraniums=fond memories of my Grandma.

So I’ve always grown red geraniums at my own home each summer.  And lately I have been very interested in over-wintering them.  With the helpful advice of our neighbor whose geraniums were years old I tackled the task.  Cutting back geranium stems and potting them in smaller containers.  Watering them just so – enough to keep alive.  A few rows of them sit on a table by the window.  The window by where the tutoring used to take place.

Now when I pass this room I am no longer crippled by the mass amount of useless stuff that is awaiting me.  I walk past the room and see something that I love.  Something that gives me life and something that will grow into beauty by spring.  I’d say that is a pretty good trade off!

*This process of de-cluttering did not come easy or all at once.  Many people have inspired me.  Included in this inspiration is “the Minimalists”.  Check out their podcast at www.theminimalists.com/podcast. *

IMG_2912  Over wintering geraniums sitting where Hannah and her tutor once sat.  And it’s okay.

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Gone but not forgotten

Re-blogged from a few years ago. Still true. Get your flu shot and protect yourself and those who are unable to get immunized.

Life in the Special Lane

Hannah sat at in the flu shot clinic waiting room.  I said to her “We’re going to get a needle – it’ll be no big deal.  It’s not going to hurt”.  Hannah responds “It won’t hurt.  Then go to gymnastics come home then get my jammies on.  Those are Sydney’s jammies.”  Hannah likes to know her routine and likes to have it stated to her and likes to state it outloud.  Many times – autism style.  The point here is that little focus was on the needle.

It was not always that way.  At age 2.5 months her heart defect was detected.  It was detected the same time an unusual cough started which quickly spiraled into bronchitis and pneumonia.  From there it was all downhill and stayed in a low valley for many years.  For years Hannah’s life was unfortunately defined by her medical needs.  Throw in  undiagnosed and untreated…

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Wo, wo, wo Let’s hold off on that ceiling …

I live well in black and white although I am trying to live in the grey.  Grey is perfect.  I love grey – it looks good on people and everything goes with grey.  Living without black and white answers in general in life seems to be my new comfort zone.  My go-to in the past was “Fine – if this is my life then just give me a f@%king moment, let me adjust and I’ll move on”.  Black.  And white.  Maybe it was a coping mechanism when Hannah’s medical and autism ruled our life – like more than it does now.  Knowing that the choices I had were zero going with the flow was the only way to go.  But it was never graceful and beautiful.

When Hannah’s ABA – autism funding was cut for her at age twelve I was nothing short of devastated.  ABA lit a pathway for her development and for every component of her life.  The program and the staffing that accompanied it provided mass amounts of support.  When it was ripped from our lives I did not know how we would carry on.  How would Hannah learn?

Thankfully the school was able to carry on what was already in place in ABA program but without the supports of ABA professionals nothing new would be added (ABA-wise).  At home we eventually succumbed to the fact that her years of being educated were finished and she would not be learning like she had during her ABA years.  We felt she had “hit her ceiling”.  I took my “f@%king moment”, grieved, pouted, mourned tantrumed … and then moved on.  Black and white.  Fine.

Now I knew she would learn things – I assumed a little bit here and there.  But I had no expectations.  For Hannah’s cognitive abilities and her level of autism ABA was the only way we saw any development.  So I assumed the worst and made it right with my soul.

And it has been okay.  She’s been happy and really if I admit it I enjoy not having my house second as a “Hannah incorporated business” with tutors, consultants and meetings running in and out (although those were fabulous years).  And frankly if Missy is happy we’re all happy.

So on we went with Hannah out of school and in adult day programming where the focus is employment based on her abilities and respite for us.  We are happy with our decision and Hannah is enjoying her life in adult day programming.  Expectations from this type A- personality mom gone and learning to relax a bit.

As I have mentioned before Hannah’s verbal skills would be classified and named by me as functionally non-verbal meaning she can repeat many things and only answer yes/no questions with a maybe 30% accuracy and say short sentences that are sometimes audible and understood.  They are usually things that meet her immediate needs or wants and are of very basic language.

So when the first question came from her I was stunned.  Hannah was ready to go to her adult day program with jacket and back pack on, sitting on a chair with a few minutes to spare to watch a television show.  She had her head oriented to the television show and her very flexible eyeballs sought me out.  “Yes?”  I said to her not expecting a response.  “When are we going?” she asked.  Stunned, my reflexes took over, “… in a few minutes.  You have time to watch TV”.

This was the first time she asked a question (aside from “Where’s dad?”) and it was so natural and amazing yet not!  But with my no expectations=happy life attitude I chalked it up to ‘that was cool – the end’.

A number of days later Hannah was enjoying some non-dairy yogurt (Silk brand found at Superstore) with granola on top.  As she was picking through the granola and separating the ingredients she dryly said “Are there raisins in here?”  Thinking she was repeating this from a Family channel show I just answered her “Yes I think there are”.  Immediately she asked “Are there anymore” to which I immediately knew this was not an echolalic (parroting) phrase and a genuine question.  She likes raisins!

I wish I could say that this would follow any book you have read on autism where there was a fascinating, exciting ‘recovery’ flowing with fabulous new developments and secrets into the mind of the autism person but that is not our reality.  Our reality is that we take what we get and enjoy every fricken piece of appropriateness we get.  The questions are still coming – maybe one or two one week then none the next.

Here’s an example of what we have been enjoying and celebrating:

We were on our way to Hannah’s cardiology appointment in Winnipeg.  Byron was driving and Hannah was in the back seat.  Byron was holding onto that holder thingy by the roof of the car.  Hannah started to imitate him and asked “What’s this?”.  I held onto mine and said “It’s for when dad is driving crazy and you hold on tight and say ‘help help!”  Hannah laughed and said “I’m stuck!”  Then after a few minutes more of driving she said “We’re going to Winnipeg.  Where is it?”  And I could tell her that we were almost there.

Then about a week later Hannah and I were driving in the car with a tablecloth folded in the back seat.  Hannah asked while looking ahead, pointing to the back seat “What’s this?”  The fact that we had to teach her pointing at age six in a very profound and purposeful way was not lost on me in that moment.

The last question she asked was while I was watching Grey’s Anatomy.  There was a patient in the hospital and she was (spoiler alert for some) united with her son.  The woman was crying tears of joy.  Hannah while piling duplo unemotionally asked “Why is she crying?”.  It is often misunderstood that people with autism have no feeling and no emotion.  We have always felt the opposite – that Hannah has extreme emotion and feeling and shuts down rather than dealing with it the way you or I would.  To explain to someone of her IQ level that she was crying because she was happy seemed a little daunting but we did anyway.

For now the silence continues and I don’t know if I’ll ever hear another question and if I don’t that all right.  But I do know that we won’t be capping her capabilities quite yet and we’ll move on with cautious optimism!  Look at me – living it up in grey!

 

Three things I am learning from a Special Needs Life

If I was a really good special needs mom or if I really had my act together then the title to this blog would predictably be entitled “Top Ten things I know from a Special Needs Life”.  However the older I get the more I know is that I don’t know.  And that it is okay not to know and not to be sure and to be open to learning.  Well know it all is defs not me.  So as I am learning I am gifted and humbly grateful to have a small blogging audience.  Thank you.  Thank you for being a place where I can share about our journey, our lessons, our frustrations and our wins.  Big and small.  I have said before I typically am not one of those “autism is beautiful” moms (however my daughter is darn beautiful) and have mostly been in work mode rather than lay back and enjoy autism mode.  But the season in our life is changing and with that I am finding that I have space to be more reflective.

I am finding the phrase “you only know what you know but you don’t know what you don’t know” very applicable these days.  I love clear answers, clear pathways and black and white directions.  But sadly no one asked me and actually that is a good thing.  Learning from a life of grey.  So here it is.  Three things I managed to dig up that are making an impact on me.  Things I would not be learning about had it not been for Hannah Banana.

#3 – I have strength I did not know existed.  It’s not extraordinary strength.  Just ‘different’ strength.  And you probably do too.  One thing that perplexes me is when people say “I couldn’t do it”.  Yes.  Yes you could.  Given that you have no choice, people are amazing and can do so much when that is what is required of them.  There is nothing special about me (my mom may disagree here) or any fellow special needs parents.  Just doing what we have to.  Because it is the right thing to do.  I used to be a really nice person (love this phrase stolen from a fellow ABA autism mom).  I used to require calm waters at all cost – including me in the price tag.  However I have learnt keeping the peace only gets you no where in the special needs world where services have to be sought out and advocated for to a variety of people.  And not one time only.  Forever.  So slowly and surely this weird strength that is not in my comfort zone is gifted to keep going.  Because surrendering is not an option.  I am learning that while I know surrendering is not an option that the strength will be there – more or less.  I’m learning this.  Less freak out’s …  After twenty years …

#2 – There is big beauty in the special needs world.  I see Jesus in the ‘least of these’.  I see God’s love in the humbleness of those working with those with special needs – maybe lifting, toileting, feeding, assisting, encouraging independence or walking alongside.  I see loveliness in the sense of humour in my girl.  When she laughs heartily at a situation that is so simple to us but hilarious to her.  Oh to laugh heartily at the simple things.  I see excitement in the gatherings that include special events or dances in the special needs community.  The smiles are huge and the dance moves are delightful!  My heart skips a beat when my typically slow moving girl picks up the pace and exits the door in a timely fashion when her respite worker comes to take her out.  She is so excited to be without mom and dad.  Even though she cannot tell us we see it in her actions.  I see beauty in her simple and honest life.  We can learn so much.

#1 – Love comes in many forms – When Hannah was younger and in the throws of severe autism and only starting with her ABA autism program we started to see small successes.  One morning Hannah looked at me and without speaking she touched my cheek.  Within seconds I was brought to tears realizing at that moment that Hannah never purposefully touched me like that before.  Children. touch. you.  They hug you, they crawl on your lap, they hold your hand.  Hannah with her autism never did and when I felt her finger on my cheek that morning I only then realized that this too was missing and that boy did it feel wonderful.

In addition to the lack of physical contact Hannah regularly does not tell us she loves us.  She will  sometimes in a rote fashion say to the dog “I love you Molly”, or “Thank you – I love you” to someone she does not know well.

Now I wish I could say from the touching cheek morning  she started to hug, cuddle and crawl on my lap while holding my hand and exclaiming her undying love for us.  But sadly that is not the case.  In fact her aversion to touch has only gotten stronger the past years.  So what am I learning from this?  That I have to find love in ways that are not typical.  I’m still looking even though I know she loves us.

So I suppose the biggest point – the “love” point I know the least about.  Maybe for now I feel love as I see that she is settled, safe, secure with a pretty good life.  Maybe I feel love as I know she is relying on me for all of these things.  Interesting stuff – this autism thing. I wouldn’t have it any other way.

Perfectly imperfect

IMG_2601.JPG

If you have ever heard the song “What doesn’t kill you makes you stronger” and said to yourself “Oh preach it Kelly (Clarkson)” this blog is hopefully for you.  Now normally I am unable to “watch my words”.  I typically don’t “think too much before I speak/write”.  My “impulse control” is not really “in control”.  In other works when I blog the words and theme typically come straight onto the keyboard.  Effortless and therapeutically.  But not this one.  I have thought about its content for awhile.  I typed in the title and started and stared.   Backspaced and started again.  So un-Angela.

We’ve been in this special needs life for 20.5 years.  And it has formed me.  Like anyone living with/caring for someone with a chronic condition.  Or anyone who has overcome tragedy or chaos and lives with the aftermath of the effects.  The one thing I have learnt is that we are all more alike then we are different.

Throughout this journey one of the most treasured comments are from people who have not necessarily had autism/sickness of a child in their life but have or are in the midst of an extremely difficult time.  I am blown away when I receive phone calls from people I don’t know from places I had not heard of or been stopped in the local mall (small town life) to have someone share their biggest burden or their weakest link because they know I will understand after having read our book and this blog.  Now I normally don’t speak Christian-ese however some would call this a ‘God thing”.  I prefer to think of it as when we are transparent and trusting in God, and are  able to put ourselves out there, in pure honesty – connections happen.  And real connections is something I crave and I believe we were created for.

When a baby is born a common phrase to ask is “Are there ten fingers and ten toes?”  And it typically means “Is the baby healthy?  Are you suspecting the baby will be normal?”  And if the answer is “yes” then we can all go on our merry way knowing that this child will likely be leading a typical life.  (How I wish nine toes and three fingers on each hand was our biggest woe).   Nobody anticipates bringing baby home anticipating a life of doctors, therapists, specialists, educational assistants, resource, more therapists, professionals, respite workers, etc.  Nobody anticipates IEP meetings, behaviour programs, clinic meetings, and day program planning.  Nope – that is not in the cards when you plan and that is not in the cards when you count the fingers and the toes.

We went through it all.  The bringing home, the counting of the toes and the fingers (and the sigh of relief that they were all there), the illnesses, the plethora of diagnosis’, the surgeries, the appointments, the sinking feeling that this disability was not going anywhere, the realization that this is it, the work, the work and the work.  Hannah worked hard through the years of age six and through high school in the ABA program (somewhat watered down in the later years due to cut funding).  During this time I had expectations and hope and dreams that she would achieve many things.  And she has achieved much, but much she has not achieved.  And for the things she has not achieved – I am disappointed.  And guess what?  I can be.  I would like her to make a meal, dress herself, shower herself, toilet herself and read just to name a few.  And guess what else?  I’m learning that it’s okay that she won’t.

Since grad and the beginning of her day program an “it is well with my soul” has come over me (or just a plain old ‘I’m tired”).  Down are the picture schedules on how to shower, how to make lunch, choose a snack (she just gets pissed off if it isn’t ketchup chips anyway), and other reminders of teaching mode.

But what remains is a knowing that we did it well.  There were no excuses and no short cuts.  What remains is knowing that she has the ability to do many things that I never would have dreamed when I picture this pre-ABA girl.

All the stress of her life has caused anxiety for me in many ways.  I’ve chosen to quit my job (we are grateful that this is an option) and focus in on me being there for Hannah who requires 24/7 care when she is not at her day program.   Like my favourite Dr. Phil says “You can be right or you can be happy”.  Right = I have a right to a career that I enjoy.  There are people who can help take care of Hannah.  Putting a focus in on just your kids is not healthy.  And in essence I agree with all of these.  But they just don’t align with our special needs lifestyle.  So I choose … happy.  I make a decision and I make it the right one.  Simplicity.  Peace.  Stress-free-ish.  (Again this is what works for us – I’m certainly not saying this is the equation for anyone else).  Choosing a simplified life so one can support an extra needs world is not easy.  And there is no handbook for the “Un-busy parent”.  And not being involved in a plethora of things certainly does not open my scope to the universe.  Am I going to be the most exciting person?  I doubt it …  but for now I choose peace and simple.  *Addendum – my mother read this and wants me to know that yes I AM very exciting*

I get home from the grocery store.  Hannah has helped me shop.  I forget that we had to teach her and help her get over her anxiety of walking in the mall for months.  I speak in a normal tone to Hannah “Bring in all the groceries”.  She brings in one bag and tries to tell me “Whew – I’m done”.  I tell her “Nice try – bring them all in” and we argue.  She brings in all four bags with two hands – something we never taught.  I forget that we had to teach her to talk.  I unload the groceries asking her to deliver different items here there and everywhere.  She does it without any problems.   I forget that we had to teach her how to deliver items to various rooms.  I ask her to please take care of the towels.  She brings the basket upstairs, folds the towels and puts them away.  And then brings the basket back down.  I feed her lunch and she effortlessly eats.   I forget that we taught her to eat.  A respite worker comes over to take her for a bike ride.  I forget that we never used to be able to take her out and that we had to teach her to walk on a sidewalk.  And biking?  That task took years and is ongoing.  Byron and I make plans to go out for an evening.  I forget that this was very difficult/impossible at one point.  Hannah shows her excitement and is obsessing about hanging out with grandparents.  I forget that we used to think she was unable to hear because she was so unresponsive.

I go upstairs to the hall closet to check out the towels.  There they are.  A hot mess.  Messily folded and not put away in any order. I forget that we taught her how fold towels and all the steps that preambled it.  But it’s beautiful.  It’s perfect.  A softly spoken realization that we’re okay.  She’s okay.  We’re okay.  Ten toes.  Ten fingers.

Special O, O, Oh my heart!

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Less athletic and competitive in sports I could not be.  Hannah has gained this gene from me – her father doing well in whatever sport he chooses to pick up.  So when we opted in the local Special Olympics program in Altona a number of years back,  I was uncertain how this would go however seeing that extracurricular activities that are appropriate for her are few and far between, we gave it a go!

Now this is not a Disney movie where Hannah’s lack of sports ability is suddenly transformed in slow motion as she enters the Special O gates.  No – Hannah is Hannah and nothing has been magically transformed (because we simply believe dreams comes true).  But rather fun work with her worker/s and the rest of the AMAZING Special O coaches.  Working together as a team to have Hannah participate as much as she can – knowing her limits and pushing her ooooohhh just a tad above!  (As we do with everything).

It was spring of last year.  The regular Special O was complete.  The track and field team continued on practicing all their events.  We knew that Hannah and her (lack of) athletic abilities paired with inability to go with the flow (on her own) would not be a match for the track and field team.  So sadly she was done for the season.  I was speaking to one of her coaches during this time and she was wondering why we had not enrolled Hannah on the track team?  How sweet, I thought.  Hannah is invited to, like, everything in Special O.  But ya, nooooo, not a match.  The coach did not accept my reasons as to why we chose to not move Hannah on in this case and gently said “I think she can do it next year.”

If anyone knows me knows that if there is a glimmer of hope I am ON IT!

So the next spring practiced.  First of all we had to consider whether or not Hannah would be able to withstand the pressure of being centre stage, and all the noises that would accompany a track meet. Hannah is hypo sensitive, meaning she feels things too much – every step, every breathe, every thought, every word is accentuated.  Beyond belief for me.  So this explains her uber-slowness.  When she is excited she cannot run towards what excites her but rather she shuts down – hugging herself and cowering her head to her chest, maybe jumping up and down.  So running?  Yea … not in the cards for this hypo sensitive autism girl.  And running was the first thing we targeted.  Heading out the the high school track and getting her to accomplish twice around the track running and walking when necessary.  Paired with skittles (throw back to the beginning of ABA sans cutting into eight pieces) and a CAN DO attitude we ran and walked the track.  Did she love the practice?  No not all the time but somehow she knew it was for Special O and so she persevered.

Suddenly a monkey wrench appeared.  I re-read the details of the qualifying papers.  “Must be able to run the 50 meters in 30 seconds or less” I read.  Emphasis on “I read”.  Sadly I reported to the Special O head coach that hey it didn’t look like Hannah would be a fit after all.  30 seconds would not be suffice.  Not even in the remote realms of suffice-ness.  “Oh well – we gave it a go” I thought.  Glimmer of hope – vanished.  I was working on the well with my soul when the head coach clarified what the paper actually said … “Must be able to run the 50 meters in 30 seconds or MORE”.  After all, it was Special O – a place for those who do not run fast.  This fact alone?  Come on – how much more marvelous can you get?!

Mother’s day approached and with it was the qualifying track and field meet at the U of M Investor’s field.  Hannah rode the bus with the other Special Olympians from Altona and Byron and I rode in our own car behind them.  How wonderful it felt to have her in another vehicle without us.  We sat with the track team and family and friends in the stands for the day.  This was all new to all of us!  When it was Hannah’s turn turn Byron and I were allowed to go with her Special O coaches down to the marshaling area.  She with two other Special Olympians would run the 50 meter.  I was a bundle of nerves – physically I knew she could do it but behaviorally I had no idea how it would go!  She had no concept of a start line and a finish line – only what we tried to teach her during our practice!  And a gun shot?  Not a great way to tell my hypo sensitive girl to start running.

Hannah walked onto the field.  Emotions started.  SHE IS WALKING!  ONTO A FIELD!!  IN PUBLIC!!  The Special O coaches brought her to the start line.  The gun shot for the ‘go’ and the other two started running.  We cheered for Hannah “RUN RUN RUN!!”  Hannah started walking – crossing every lane line there was.  When the Special Olympian official said to her “keep going Hannah – right over here” Hannah took it literally and walked over to the official (who was one foot away from the finish line).  Then Hannah argued with us all as we encouraged her to run to the finish line where she stopped one inch before the line and argued some more.  Finally she crossed the line!  Really – more proud we could not all be!  Was there room for improvement?  Sure – But all the skills she showed that day were amazing!!

The official track and field meet was about a month away so our practice continued.  The morning of the track meet came upon us and we arrived back at the U of M track field.  When the 50 meters event approached I was gently let in on ‘how this would all go down’ starting with that I would stay in the stands and the Altona coaches would take her down to the marshaling area where the Special Olympic officials would take her to the start line.  The fact that Hannah would be asked to go with the flow with someone other than me or trained staff was already a huge win and I had no concerns about me staying and her walking with others.  Our Altona Panthers coaches have gained her trust and Hannah adores them all – so I knew she was in great hands!

As Hannah walked onto the field with the official and the other two runners I knew that our diligent work was going to pay off!  And as the gun shot ‘go’ Hannah started running!  Not fast but a great and steady speed for her!  She ran all the way to the finish line!  More proud I could not be!!

When it was time for the awards ceremony we were excited to see all of our athletes receive their medals from members of the Winnipeg Police.  When it was Hannah’s turn she, without skipping a beat, went up to the stage to receive her award.  It seemed like there was nothing she would not conquer this day!

All of these steps have been accomplished due to the diligent work Hannah’s team has done throughout her whole life.  From the beginning stages when we taught her to point her finger to teaching her how to run.  We are not an island.

The mood at any Special Olympic event is simply … heavenly.  I would encourage anyone to attend a Special Olympic event if possible, or volunteer – especially those of you who are … how can I say this … extremely invested in your child’s athletic career in an “unhealthy” or “angry” way.  There is cheering for everyone no matter if you are walking, crossing lines, arguing or running a 50 meter in over 30 seconds!  There is a sense of acceptance, fun and pure joy that is indescribable.  You will never forget it!

The Special Olympic creed is “Let me win, but if I cannot win, let me be brave in the attempt”.  Okay just typing this makes me tear up … But Hannah showed so much bravery throughout this whole process.  From learning to run to running when a gun shot says go.  Thank you Special Olympics – for creating a space where my child and other’s like her can shine!

 

 

 

WHY THE “R-WORD” IS NO LONGER IN MY VOCABULARY

We have all said it. Including myself. But when you know better – you do better. And I am doing better. The “r” word or for those who do not know which word I am referring to is “retarded”. Or other forms, “tard”, “brotard”. When I looked it up in the Urban dictionary my options were unfortunately endless and I felt sad.

When we were looking for a diagnosis for Hannah, our autism girl, we saw specialist after specialist. This was before the time that autism was being diagnosed at the rate it is now. We knew there were serious cognitive issues with her however we felt helpless, scared and tired in trying to make sense of it all. She was six years old before she received her autism diagnosis – so for all those years we tried to cope and tried to find effective help in amongst her medical conditions that kept her very ill.

At age six she had only been walking for four years and we still carried her. She did not respond to her name, she could not go out in public with us, she could not eat appropriate foods, she was not toilet trained and she did not have any social skills. And when I say “any” I mean any. She was in her own world battling obscure laughing fits for hours which caused her to be even more in her own world. She could not talk unless she used the sentence “time to go home – time to go home”. We knew she had a developmental delay however we had hope that we could help her reach her own potential. Where she was at? That was not reaching anything except barriers.

The child developmental specialist either missed the seminars on diagnosing autism – we do not know – but it was missed at age four. So we carried on for two more years until an appropriate diagnoses. That is 730 extra days we coped with the unknown autism … scared, frustrated beyond belief and isolated.

The child developmental specialist perhaps thought we were parents in denial – as she had her “sympathetic” look on. She really did not probe for answers from us. As Hannah failed all the testing in her office (she could not talk or respond to any questions) the doctor gave us the diagnosis.

“If the developmental age of a person is half or under of their chronological age that person is ‘mentally retarded‘. And I know that is difficult to hear”.

Yes it was difficult to hear. It ripped my heart into pieces. Not because I could not love a child with developmental disabilities but to hear that word. When the word is used it is used to tease, to laugh at and to call someone stupid. This is what my daughter was?

I was angry at the doctor. Angry at the message and angry that she failed us in diagnosing the autism (that came later with a different specialist). We went home and continued our search and I never told anyone about the “r” word diagnosis. It hurt to even say the word.
So now you know. So next time your friend acts silly in public or you forget your keys, or someone cuts in front of you, if you can, find another word to use. I suggest checking out Urban Dictionary.

Still not convinced? Spend some time at Special Olympics, hanging out with children and adults with developmental disabilities, or come hang out with us. You will see a spirit of people like you have never seen before. You will see my daughter working her butt off to accomplish things. All academics, all self-help, all social skills. Even walking from point A to point B is difficult – but she continues to work day in and day out with a fabulous, highly trained team helping us. Yes her development falls in the ‘mental retardation’ range and honestly every report I read, I quickly scan hoping the professional has not used the word (yes it is still used). Her developmental level is meaningless to us. As long as we see her continue to thrive and meet her own potential – we are happy.

Check out this short one minute video clip: