The Palm Trees

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I recently read a quote from Plato, “An unexamined life is not worth living”.  Ho hoooo …. if this is true then my life is REALLY worth living – says the over-thinker in me.  (Pats back).  Aaaaaannd if I reel it in I realize like everything (sigh) balance is key.  You could have mentioned that as well Plato.

We recently returned from a trip to Hawaii with our family.  Again we traveled with Hannah.  Something we have always tried to do.  In the early years it was difficult – trying to manage the vacation time that would include her, engage her yet not be all about her.  But we did it and as the years have gone by it has become easier. Hannah was a great traveler this year.  Accepting being chosen for random drug screening in the airport, walking in the airport at a quickened pace, using the bathroom well, hiking and accepting momentary hand holds during ‘dangerous’ peaks in the trail and going with the flow.

One trait that Hannah’s autism has given her is perseveration.  Think to “persevere”on steroids.  Hannah has two main “perseverations”.  Activities that she repetitively does for hours if not stopped.  One is building a square and filling it – building it up with duplo blocks.  The other is piling up sand with a pail and shovel and starting over again.

So the beach in Hawaii was verrrrrry exciting for Hannah.  She talked dreamily and obsessively over and over about “pail and shovel” and “sand” weeks before the trip.  In the earlier years I was sad about this weird perseveration and lack of interest in normal beach activities.  We always got her to break away from “sand” and either go for a walk, build something different in the sand or anything other than the lonesome sand piling activity.  But like many other things in her life that boat has floated and I have succumbed to the fact that this is just how it is.  The. end.  (By the way the phrase ‘the end’ makes her laugh and laugh!)

The beach time with Hannah was simple.  She carried her pail and shovel to the beach, we parked her under the shaded palm trees and we planted our butts on the sand and read/slept as she shook with excitement, ready to start a-pilin’.  (It should be noted that the above picture was under GREAT distress for Hannah.  She had to stop piling sand for a moment to pose for a picture).

As I lay on the beach blanket staring up at the sky I noted the two palm trees that were in my view.  It was glaringly obvious to me that the trees represented Hannah and myself.  The smaller tree was Hannah and the larger tree was myself.  Having her on a holiday with us means no support in terms of others caring for her and the weight falls on our shoulders.  While this is a fun time it is also exhausting (as we age).  I could not help but see the resemblance in how these trees related to each other.  At first all I could see was the branches reaching out to each other.  Even the trunks had solidly oriented to each other.  “Hannah” completely reaching up to me and “Mom” reaching down to her.  That has been my danger throughout her life.  My life too wrapped up in her.  No separation.  Her wins=my wins, her trials=my trials.

But as I watched the trees blow in the breeze I noted that while many branches reached out towards each other that many branches blew their separate ways.  Together and apart.

One day we will be apart.  It has been our goal all along to make her as independent as possible.   Did I do enough?  Should I have done anything different?  Will she be safe?

We all want this for our kiddos.  Special needs or typical learning.  However when you have a child with special needs and know one day someone else will be in charge of them – it can lead to anxiety-ridden thinking.  All we can do is trust and prepare the way as best we can to make this happen.

The next day we planted ourselves away from the two trees.  My brain needs a break.  Hannah did not care where we were as long as she had her “pail and shovel”.

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Kindness

In all honesty this is one of the most difficult posts to get my butt to the computer to compose.  Most of the blog posts erupting from “Life in the Special Lane” had definite purpose, a story to tell, a win for Hannah to brag about, or difficulties to share.  As the administrator of this blog I have access to the stats.  It’s fun to see on publish day  the amount of readers and where in the world they are all from (literally).  My wounded pride gets the better of me when I see a blog stat that does not get high numbers and I have realized after this many years that people like ‘feel good’ stories.  The blog posts where Hannah has been included, or when she bought a bag of chips or when she graduated all received really high stats and quite honestly that feels great as a writer to see.

But that’s not life.  For every high there are many, many lows or sometimes worse – mundane-ness in our life.  So the blog posts where I speak of the difficulties and some of the deeper thoughts of autism life do not always get high stats.

I was wondering about ending the blog because I feel the years of seeing many new wins are complete and we are maybe in the years of simply coasting rather than soaring.  However I had a couple of wise friends remind me that it is not about the numbers however maybe it is about the ‘right’ person who is reading.  Maybe it is a frustrated or scared new autism mom, or a friend of a family supporting an autism child/adult or somebody wanting to work in the field.  Heaven knows I have had much feedback from people I have never met.  We are all connected when we decide on honesty and transparency.  So pride aside – I write on.

Me and my A- personality like to have goals.  Definite reasons and plans for life and for the day and hours.  When Hannah was young and was in the ABA program that fit well with  my personality.  Goals, data, science, clinics, papers and the beloved organized binder (with tabs!!) were part of our day and it felt – no we knew that we were making gains.  Now that ABA is a thing of the past (sniff sniff) it is sometimes difficult to find my purpose with this here autism life.

And I have been mulling over this for awhile.  What’s my purpose?  Besides my few casual jobs that I do that I work around Hannah’s schedule, is this all I am good for?  Dressing, toileting, assisting in self care, feeding, entertaining, planning, teaching and everything else that one needs in a day – this is reality.  While we have others that assist in her life she needs a constant.  A rock.  Me.  Sometimes I don’t want the job.  I’ve given up that she will turn the shower on by herself, that she will put her shirt on by herself, that she will fix a meal (even a simple one) by herself, that she will anticipate the weather and dress accordingly, that she will text or communicate on her own, that she will ask about my day, … oh I could go on an on.  When we had hope I had drive.  The hope for many of this is gone and I am in acceptance mode.  (It was a long ugly road).

So how do I accept this?  How do I find joy in our day to day life when it’s pretty silent?

I am obsessed with the man and the workings of Jean Vanier – a theologian, humanitarian and philosopher that founded the L’Arche communities – communities where those with developmental disabilities live in community with those typically abled.  To hear him speak sends chills and tears throughout me.  The kindness, gentleness and love just ooze from his being.  He speaks of his interactions of those with disabilities and I cling to his words.  Partially because he’s that good and partially because there are not a whole lot of role models out there for me to obsess over in this field.  He speaks of what we can learn from living with those ‘less than’ as we would say saying that everyone wants to know that “they are here” and that “they are loved”.

Clinging to his words sets a new goal for me.  Rather than ‘saving Hannah from the throes of autism’ or rather having her meet her own true potential my goal can be to let Hannah know that ‘she is here’ and that ‘she is loved’.  That every act I do is showing God’s love.  Every sock I pull out of the drawer for her, every piece of toilet paper that I use, every granola bar that I purchase so she can have her favourite snack (oops I forgot she can prepare ONE meal for herself!  She can open a granola bar!), every text I send to plan some love and fun in her life, every paper we fill out for her future, and every time I wipe her face to keep her clean, etc. I am the hands of God.  Showing love showing compassion and showing humility.  (After all I could be doing things waaaaay more important – is where I tend to go).

Now some moms/parents just naturally do this.  They don’t need to think about a life of servant-hood to their children.  It must be nice to have that quality.  I do not bestow this – hence the work-shopping of this all.

So if this ideology was plain ol’ cake, then I was given a wonderful serving of icing this past week in form of a song.  “Kindness” written by Brian McLaren and performed by one of my favourite singer/songwriters Steve Bell.

Living a life supporting those with special needs has zero glamour to it.  It can be tough, scary, boring, exhausting and lonely.  It also is lovely, beautiful, deep and opens doors that one didn’t even know existing.  Windows to see beauty that not everyone gets access to.  We are thankful to God for all God’s provisions.  And there are a lot.

“KINDNESS” – written by Bran McLaren and performed by Steve Bell
https://www.youtube.com/watch?v=LNguQnJeLOQ

Christ has no body here but ours
No hands no feet here on earth but ours

Ours are the eyes through which he looks
On this world with kindness.

Ours are the hands through which he works.
Ours are the feet through which he moves.

Our are the voices through which he speaks
To this world with  kindness.

Through our touch, our smile, our listening ear
Embodies in us.  Jesus is living here.

Let us go now, inspirited.  Into this world with kindness.

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.

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

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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.