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!

 

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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

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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:

Camping, a dog fight and a serendipitous meeting

We were camping virgins.  After years of wistfully watching  our friends camp and continuously and sadly denying their invitations for us to join them – after all what would would we do with Hannah – we decided the time had come to try and join in the camping world.  The recipe for success laid before us – a camper with a door to Hannah’s bedroom to provide sanity and separation, friends that could assist us and answer all of our questions and a beautiful new camper.  Hannah and I named our new camper “Glampy” – you know … glamping?  Glamour camping?  Hannah loved to say “Here is my Glampy pillow”.  Except she said it really fast – more like “this.is.my.GLAMPY.pillow”.  Over and over.  She was extremely unimpressed when she accidentally banged her head on the top bunk as she sat near glampy pillow.  I mentioned to her that she would probably do that once.  She probably did it more.

So away we went on our first camping trip.  Paired with wonderful friends who ‘got’ Hannah and lovingly and continuously accepted her.  We were excited.  Flying off to a problem-free start?  Further from the truth that could not be … but eventually we did arrive at our camp site.  Icelandic State park.  Half an hour away – but in the U.S.  Close yet not.

We brought our Shepherd/retriever cross dog along – Molly.  We love Molly.  And Molly the velcro dog loves us.  One evening my friend and I were walking.  I had Molly on a chest harness and leash and Hannah was biking alongside us in her adult trike.  All was well when suddenly a larger dog came charging towards us.  The dog was wearing a collar and leash however did not have a handler.  The dog was laser focused on Molly and barking.  I knew a fight was about to ensue.

I immediately braced myself and held tightly onto Molly as I shouted for help!  I tried to continuously move Molly out of the way as the other dog charged at her with baring teeth and as Molly tried to fight back.  I worked completely on adrenaline and I am certain I saw Molly flying in the air like a kite as I moved her.  (I am uncertain I handled this correctly however this is what my instincts told me).  The dog fight seemed to last forever and no dog owner came into sight when suddenly a camping neighbour got in the middle of the fight, created a firm and strong stance and shouted at the other dog to ‘Stay back!”.  The dog obeyed for that moment when the owner came running down the road apologizing and looking flustered.  Maybe more flustered and less apologizing … I don’t think she knew what really happened.  Nor did she seem to get the severity.

Fortunately my friend had Hannah’s back and miraculously not I, nor any of the two dogs, were hurt.  Not even a scratch.  We were all just a little flustered and Hannah only quietly and mildly obsessed about “I was too scared of the dog”.  For the next couple of weeks.  It’s actually still happening.

The next morning as we were outside enjoying coffee and breakfast the manager of the campsite came to check on us and our dog.  He read the incident report and was working on a follow up.

I mentioned that we were all physically fine and that our autism daughter was only slightly emotionally scarred.  He thought for a moment then asked us where we were from.  As I answered, it prompted more questions from him – our last name, then my first name.  He teared up as he quietly said, “I’ve read your book”  (“Living with Rain Girl” is Hannah and our families story about Hannah’s first ten years of life – available on Amazon.  Or I have a bunch in my basement).  He went on to say that he himself has a daughter who was diagnosed with autism and he had been hoping that one day he could meet us (Icelandic State Park is an extremely popular destination for those living in Altona).

Our book came at a timely fashion for him and his family and it inspired them to look into the ABA program for their daughter.  Once you start talking ABA and autism between families you cannot stop.  ABA and autism talk removes all barriers and creates immediate friends and immediate connections.  All stories will be different yet vastly the same.  We were so happy to hear of the successes ABA and all the diligent work provided for his daughter.  We each had story after story about our experiences and our phenomenal girls.  Stories that only another autism parent could understand.  What a gift!

I will add a little shout out to Icelandic State Park in the addition of a family/handicap washroom.  Two large private washrooms to choose from where a parent of either gender can shower and care for their child of either gender.  (This is a real struggle).  I or Byron could shower Hannah in these washrooms so easily – without skipping a beat.  The washrooms were designed inspired by the manager’s daughter.

What can I say?  Would I choose autism life for Hannah and for our family?  I don’t know because it is such a difficult life and I hate seeing Hannah struggle autism-ly.  Nobody wants to see their children suffer and when your children are 24/7 in your care you see a lot of continuous struggle and discontentment.  Kind of in your face – like all the time.  But taking away autism from Hannah would change who she is and I could never do that.  Glad I don’t have to decide.  What I can say is that a blessing that autism has given me is the connection I have with fellow special needs families.  An unwritten rule that these folks ‘get it’ and no words or explanation is necessary.  Often long and intense conversations are the product once one has learned we are ‘the same’.  A beautiful Ohana.

So thanks be to that dumb dog (I’m joking I’m joking!) or rather negligent owner that brought us a moment of respite in our camping week.  Respite in the form of connection and the knowledge that once again we are not alone.

#Icelandic state park

Graduating it up – Hannah style

 

It was December.  Hannah was in grade two.  (pffft as if I actually remember the exact grade).  Hannah had been in intense ABA for two years only having been diagnosed late with autism at age six.  Lots of grunt work was still being done.  Everything was a challenge to say the least.  In school we were working on basic coping skills.  Coping with tough grade two things like standing in line, walking down the hall, not ripping papers off the wall or clearing desks in a fit.  Her EA was thick skinned, kind, intelligent and the hardest of workers.  She got the worst years – however she would say she got the best years.  It wasn’t a matter of if Hannah would fight or cause disruption but rather how much and how disruptive.  I felt alone.

The students in school were getting ready for their Christmas concert.  Hannah and her EA worked diligently on walking with the kids, filing in and sitting.  Hannah sat as the kids excitedly sang, recited, acted and jingled.  As the kids filed out Hannah flopped to the floor in an autism fit and her EA needed to lift her and behaviourly manage her back on her feet.  People stared.  The amount of work it took for Hannah to walk, file and sit was equivalent if not more than the work the typical learning kids had accomplished.

Seeing this reeked havoc on my well being.  How could I sit in my seat and watch her only sit and fall to the floor while only imagining what others were thinking of her?  While I know I am not a mind reader (my therapist has told me so) it was too much.  Unstoppable tears flowed as parents filed out and excitedly greeted their children.  I was not ashamed of Hannah – never – I just could not cope in the typical world.

So I decided.  No more.  No more concerts.  No more typical world meets our weird autism world.  I had enough to cope with to add on work-shopping all the feels.  And it worked.  It was one less thing I had to go to at Christmas time (woo-hoo!) and my emotions had to work just a little less.

So all through the rest of her school years I avoided worlds colliding.  I managed to scope out my own little personal bubble in the school system often not knowing school staff or events.  No colliding = peace.

As the years went on the subject of grad came up and we had decisions to make.  Would we want Hannah to graduate?  If so how would it look?  I had prepared myself that yes Hannah would graduate because after all she loves attention and we knew she would really enjoy being doted on during the grad process.  So we agreed Hannah would attend the ceremony.

I was on an emotional roller coaster the months preceding grad.  This would be the mother of all worlds colliding.  A small Christmas program vs. high school graduation.  Emotions like sadness that this would be so different than what is typical, grieving this altered milestone, angry at the thought she might be laughed at (because she was so ‘cute), afraid she would flop to the ground and not get up like she did in grade two, and then over-whelming pride for my marvelous daughter.

Her EA’s and resource teacher worked and came up with a plan so that grad would be a success.  When plan A did not work plan B and a little plan C came into place.

The afternoon of grad approached.  As Hannah walked onto her corner of the stage (without an EA) to receive her diploma then walked three more steps to have her tassel moved I oozed with pride and did not (really) tear up.  But her dad did … just saying.  She was glowing!  She did it – Hannah style!!  (Which is extremely stylish!)

Just some really big props to WC Miller Collegiate for so sensitively handling this.  We were all treated with kindness and dignity.  I am really grateful.

We had planned her own after grad party – ditching the traditional banquet and dance.  Hannah was not connected with this grad class and it would mean nothing to her.  So we made it Hannah style.  I started researching e-mails and contact information and got a hold of nearly ALL of her former ABA workers/respite workers, main EA’s at school and resource teachers.  Adding in our friends and family our guest list was around 70.  No problem I thought.  Not everyone will be able to make it or maybe even want to … I could not have been more wrong.  Nearly everyone responded ‘yes’ to which put me in major party plan mode.  A party made for our graduate!

Hannah looked beautiful in her dress and loved all the people there.  We managed to snag a picture of her ABA village.  (see above picture).  Byron and I had a chance to say a few words (which pleased Hannah greatly) and we could thank this team.  From sitting and flopping with assistance in grade two to walking on the stage in a huge auditorium without an EA.  This team is responsible for these event and everything in between.

If you have a child with autism please do not give up on them. Do the hard work.  Do not give up on them.  Do not let them fall through the cracks and continuously advocate for them.  Do I wish Hannah could have more skills – in all honesty yes I wish more for her.  However I look at what her life would be like if we had not done all the work with her and I shudder at where we would all be right now.  We are excited to move out of school life and to the consistency of adult programming.  So far – so good!