Still aware #lightitupblue

 

It starts at 7:55 am.  Hannah’s alarm:  BEEP BEEP BEEP … I have my delicious cup of coffee in my hand and don’t wait or wonder if she will get up on her own like she has been taught for so many years.  I know she likely won’t.  She has regressed.  “Hannah!  Get up – time for school!”.  Without any expectations I take my partner in crime (my delicious coffee) up the stairs to start my autism day.  “Where is Hannah?” I say.  But Hannah prefers a different greeting and suggests, “Where’s my pretty girl?”.  I change it for her, “Where’s my pretty girl” because after all she is beautiful.  “I’m right here” Hannah says as she’s sitting on the toilet.  “Aunt B,’s asleep”.  She is disappointed that her 101 year old Great great aunt was not awake during an attempted visit yesterday.  I assure her that her and her dad will try again soon.  “I can’t see Aunt B.”.  Trying to ignore the obsessive talk, I continue getting her dressed with the same “no expectations” attitude.  I have given up that she will one day dress herself.  Together we get her dressed … I do what I have to and Hannah does what she can.  This is well with my soul.  It’s 8:10 am.

Hannah comes down the stairs and I ask her what she wants for breakfast even though I know the answer.  “Toast. and. peanut butter”.  And then autismly tags on “I can’t see Aunt B. anymore”  After explaining again that her and dad will try again I try to maintain the “no expectations” attitude (this is all so much easier with my coffee in hand).  Again I do what I have to and Hannah does the rest.  I have dropped expectations that she will get her own breakfast.  Still well with my soul.  But Hannah tries something new … she likes to cut her toast in half and almost succeeds!  I ooze with pride!  “Great cutting Hannah!”  I exclaim.  “Aunt B.s asleep” Hannah replies and hugs herself in an angry self hug.  She gets over it -kind of and finishes her breakfast.  We head upstairs for hair brush and teeth brush.  It’s 8:20 am.

We open the drawer to where the hair brush is.  Molly the sensitive retriever cross runs down the stairs knowing Hannah will be uncomfortable and her and I will have ‘words’.  In my mind I start to go down the ‘wtf’ road as her hair really is not that tangly and the reaction we get (like have gotten for years) is so over the top.  I forget.  I forget that she has autism and I get all wtf-y when it doesn’t suit me.  Real mature.  Real inspirational-ly.  I get the specialized ‘wet brush’ that is actually quite amazing and the expensive but worth it Kevin Murphy hair detangler and we get to work.  It is horrific for Hannah and Molly is nowhere to be found.  I feel horrible putting her through this pain everyday.  We get her toothpaste and toothbrush out knowing that her last dentist visit was a success!  The dentist only could catch a mere glimpse of her teeth and didn’t see anything urgently wrong.  In the midst of the lack of effective tooth brushing we. were. doing. something. right!  Or so I choose to believe.  We finish the struggle of brushing the teeth (never really seeing a tooth) and put a little bit of blush and perfume on her.  She loves this and I love doting on her in this way.  There is no Aunt B. talk.  The traumatic hair trumped Aunt B.  It is 8:30 am.

We have the ‘getting ready for school routine” down to the minute.

Hannah gets her boots and jacket on and I quickly write details about her day in her home/school  journal so she can talk about something in class.  I mention that failed attempt at the care home and that a new attempt will happen soon.  They will likely hear about it at school.  Hannah is being extraordinarily slow so instead of insisting that she pack – lowered expectations/well with my soul – I quickly dump her ipad, journal and lunch in her backpack.  She puts her back pack on and incorrectly twists the strap in the same way every day.  I note that I should try to teach her the correct way because if she can consistently do it incorrectly and can learn to consistently learn to do it the correct way.  I forget to write my intentions down in my notebook and hence has not been taught.  Hannah gets to choose a show while she waits for the bus.  “Hannah – do you want Clifford the big red dog or Dorie?” I ask knowing the answer.  “How ’bout some Clifford?” Hannah answers.  Bingo.  Right. again.  We turn on Clifford and Hannah giggles in delight and hugs herself in an excited fashion.

Molly the sensitive retriever cross waits for the bus and excitedly and gently herds Hannah to the front door once the bus arrives.  “Goodbye Hannah!  I love you!  Have a GREAT day at school!”  I shout out to her as she independently with Molly’s help leaves our house.  “Aunt B.’s asleep” Hannah replies.  I mentally note that “Aunt B.’s asleep” really probably means “Bye Mom thanks for all you do and I love you lots”.  The door slams.  Hallelujah!  I am grateful for her school staff.  Bless their weary souls they will be hearing about Aunt B. all day.  But have the tactics to move on.  It is 8:40 am.

I go on with my day with on and off thoughts/worries/anxieties of Hannah and her future.  3:25 pm comes before I know it.

The door opens and the Queen walks in.  “Hello!  Hannah Jane!  How was school?”  I know I won’t get a ‘straight answer’ but ask anyway in my lowered expectations/well with my soul new approach.  And don’t do the level playing field thing to a parent of a special needs or any atypical needs parent by saying “I know what you  mean – my kid doesn’t tell me about their day either”.  If you need explanation – message me.  Hannah replies, “I can’t go to school anymore.  Not today”.  I forget my lowered expectations/well with my soul momentarily and start to correct “Hannah school is done for today.  I asked how WAS school?”  Such a balance of letting go and teaching.  I’m exhausted.  Hannah continues “Not today.  No school today”.  She does not have the communication skills to answer a question involving ‘how was’.  But I forgot.  I’m old.

We get her favourite snack ever.  Ketchup chips.  I tease her as her almost whole face is covered in red crap (not literally – in the special needs world one uses the literal crap quite often) “Hannah – I don’t like ketchup chips.  They are GROSS …. ewwwwwww!”  Hannah maintains her neutral Queen face and keeps eating.  My awesome humour is lost on her.  Sigh.

But I do know what will get her … some exciting news!  “Hannah – guess what?!  Today we are going to see Emily (her older sister) for supper!”  Hannah’s face lights up!  “HEY Goob!” she exclaims and hugs herself getting red ketchup chip crap (not literally) on her shirt from the hug.  Hannah couldn’t be happier as she recites the greeting she expects from her sister.  ‘HEY Goob – want some chicken fingers, french fries and diet PEPSI?!”  Diet pepsi is smack talk from Hannah to her dad who is an avid diet coke fan – who knew? Hannah is funny!

Hannah finishes her snack, washes up and uses the washroom.  I take her in the car and we wait to get gas.  I have a runny nose in the vehicle and sniffle my way through my words, “Aw man I need a kleenex!  Where’s a kleenex?”  Hannah in her echolalic and great mood echos me, “I need a kleenex (sniff sniff).  There’s no kleenex (sniff sniff)”.  I laugh – Hannah is so funny!  Her humour is NOT lost on me!

We meet Emily for supper.  Hannah is elated and fly/gallops through the parking lot of the restaurant – this ‘thing’ she does when she is really happy.  Emily greets her sister – according to plan “Hey Goob!”  Hannah is all smiles and follows through on a half hug..  Hugs are tough.  After the greeting is over Hannah reverts back to being extremely autistic and zones out of all conversations.  I start to go down the wtf road remembering that she was excited and forgetting that she has autism.  Once again.  When we purposely engage Hannah she can engage on 5 second interactions.  I am torn.  My type A- personality makes things difficult for me.

We go home and get Hannah ready for bed.  “Good night Hannah – I love you.”  But Hannah still has her sister in her mind “Hey Goob.  Bye Emily.  Thank you so much Emily”.  This is my new lowered expectation/well with my soul homework.  Hannah cannot engage like someone without autism and my expectations need to change.  I suppose we’ll see with autismly aware 2018 brings!

April 2 is light it up blue day – I still don’t have my blue lightbulb.  Maybe I’ll check on amazon for next year.  I’ll put it in my notebook.

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Happy 20th Hannah Banana

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You.  You were the New Year’s baby on February 4 in our small town.  The first ‘atypical’ thing about you.  You were content and you loved your baths.  But soon you grew differently.  We knew something was ‘off’ with you.  You grew sick in body but so strong in spirit.  You instinctively knew how to fight and who to fight already at age three months of age.  That strength remains in you today.  Every second of your day must be borderline torturous.  But you barrel through.  Like all the time.  Never feeling sorry for yourself, never dramatizing, or over reacting.  Reacting exactly how you feel.  Overcoming all noises, feelings and senses.  Overcoming and moving on.  Always.

Hannah Banana you are so loved!   But because of your autism you appear aloof and uncaring – but boy Miss ‘appear aloof and uncaring’ this makes you ROCK those aviator sunglasses!  “The Intimidator”.  But once someone knows you – they get you.  And you know it.  And you never forget a friend.

You are loved but you also love.  You love your family – especially your grandparents and your sister.  And obvi us – mom and dad.  Even though you appear not to care about your loved ones presence, we see it.  Before and after.  Smiles and self hugs.  And loving phrases repeated.  “Oh heeeeeyyy Emily!”  “Thank you sooo much Nana”, or “We saw Grandma!!”  But somehow being in the presence of your loved ones is overwhelming and your behaviour does not show that you enjoy our company.  But we know.  We know.  You love.  Take that wrong 1980’s doctors.

You are funny!  Sometimes you try to be funny (and that is HILARIOUS!) and sometimes you just are funny without trying.  Rarely you laugh when we laugh and when you do it swells up  my heart!  But mostly when we laugh you look like ‘The intimidator’.  Neutral face, neutral expression, no words.  But we KNOW when you clip the back of our heels (especially your sister) with the shopping cart that is a joke.  We can tell because even though it appears that you’re not looking you are impeccable with balance, spacial awareness and ability to maneuver.  And when that shopping cart hits your sister’s heels you are smiling and hugging yourself.  We know that is a joke.  Well played Hannah.  Well played.  Someone else’s sneeze sends you in a fit of laughter!  You watch with gleeful anticipation as their faces distort, ready to sneeze.  Throw in a two or three in a row sneezer?!  Now THAT’S gold for you!!  And I won’t even get into the list of words that is enchanting to you.

You are a style queen!  You love pink.  And you make sure we know it.  I ask you, “Do you like pink or purple?” and you reply “Pink!”.  I ask in another way, “Do you like yellow or pink?” and you reply “Pink!”.  Message received.  You love a little bit of makeup and while you hate having your hair brushed (it hurts you I know) you love to have ‘beautiful hair’.  I have a variety of morning greetings for you but you insist on “Where’s my pretty girl?!”

You’re not just a style queen you are basically a queen – period!  Your Majesty loves to know what’s up for her day.  You listen, with what appears to be, minimal interest as I, your worker, recite your day, week or weekend plans for you.  It appears that you are listening with minimal interest, but boy you are listening.  Intimidator style.  We know because if you ‘approve’ we see the smile and the huge self-hug!  Whew!  Passed.

You never judge, discriminate or hate.  Like ever.  You. don’t. know. how.  That is continuously lost on me.  How I can learn from you.

You have a celebrity crush and many crushes on cute boys in your life.  I love to see you blush and play with your hair when we tease you!  You should see her room.  Covered with Ross Lynch paraphernalia.

You know bullsh!t and call it in your ‘The Intimidator’  way.  You want a meaningful life.  You know – like everyone does.  Strange.  Not.

You love music.  You’ve always loved classical.  At  nearly age two when you were still unable to crawl or walk you sat in front of the speakers and listened to “The Messiah”.  Years later we took you to the three hour concert where you took it all in.  “The Intimidator” style enjoying an ice cream at the intermission.  In a beautiful dress.

The list could be so much longer … You’ve made it passed the teen years.  You are happy!  You are brave and you are oh so loved!  And you don’t really like bananas … “not a fan” we say.

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Mourn and move

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The package arrived in the mail.  Confident it was my new Dr. Temple Grandin book “The Loving Push” I quickly opened the Amazon box.  Oh.  It wasn’t.  It was the duplo base plates I purchased for Hannah.

Disappointment came over me.  And not because it was not the book I was anticipating but because it was there.  A gift for Hannah.  A gift for her 20th birthday coming up soon.  Who the “f.” plays with duplo at age 20 anyway?  Who the “f” after age 5 plays with duplo anyway?  Selfishly and ugly I thought that this was not my dream for her.

Feeling sorry for myself vented to some close friends.  They heard me, they had my back, they didn’t try to convince me otherwise and loved me right through it.  After some time I felt better and started thinking about how excited Hannah would be when she opened her new base plates – or perhaps how she may toss them aside as they are not her regular base plates.  But they are pink … so fingers crossed.

Point here is I just needed my moment.  A moment where I was not judged for my feelings and felt the compassion and strength from those who got it.  I needed that moment to move forward.  Grace and love.  No judgement.  Love.  Mourn and move.

I realize that Hannah’s birthday’s are something that bites me in the behind.  Blatant milestones – age 5 – Kindergarten, age 12 babysitting, age 16 driving, age 18 drinking …. I mean adulthood and so on.  In your face reminders that these milestones are not even maybe gonna happen.  Seeing the duplo at age 20 reminded me how far off we are from developmental milestones.  The developmental gap increases with each age.

I was having a conversation and catching up with a family member at Christmas time about Hannah.  She was asking earnestly how Hannah was doing.  Without realizing what I was saying, the words came out, “I am disappointed”.  Now publicly writing this brings me off my high horse and as humble as can be.  Which parent admits this about their child?

Now I am not disappointed in who Hannah is or her as a person.  As I spoke I realized what I meant was that I am disappointed that the proverbial ceiling has been hit.  This is likely as good as it gets or more likely as good as it gets with some regression to anticipate.  There was never any resemblance to a W5 story when she magically started typing, or started playing the piano and sing.  Disappointed that I will probably always be this tired and then some, that she will always be 24/7 care with all of her needs needing attending to, and did I mention always be this tired?

Mourn.

Lately I have felt lost.  With the events of discrimination, bullying and anger being prevalent near and far for me,  what used to be a source of consolation was no longer.  I didn’t feel God was distant but rather beside me, walking as I wandered, lost.  Like two sets of footprints in the sand.  Lost and together.  Prayer was absent and seemingly impossible.  I felt stuck and lost.

So glad I have God that accepts me for who I am.  Not judging me for my lostness but rather walking beside me.  Eventually it came.  Open doors, places and people who provided strength, podcasts and situations that brought direction and inspiration.  The prayers came.  The tears came.

And move.

I realize that as Hannah gets older the “birthday bite in the behind” is getting less and less.  I am able to be more focused in on what Hannah does like and provide gifts, fun and people for her on her day.  This is due to the work that we have done, that she is able to cope in many life situations.

Grateful for a community of people, a tribe that have always loved me for who I am.  That let me say I am disappointed, or I cannot pray.  Grateful that I feel safe.  That strength, that love, that grace gives me the power to do this thing.  The ability to mourn and the strength to move on.

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Reality …

The question will be asked …. “Did you have a good Christmas?”  When you are special needs mom and in particular an autism mom that question is loaded.  Did I have a good Christmas?  Yes … I think I did.

For me raising and supporting a person with Hannah’s severity of autism the battle from the get go has been to separate myself from her.  The. get. go.  Letting go that her struggles are not my struggles.  Her issues are not my issues.  We are two separate people.  HA!  Easier said than done.  This has been a lifetime of constant work – to have a life beyond Hannah and her autism life.

The week before Christmas was busy with prepping for Christmas.  Cleaning, wrapping, finishing up shopping, working, visiting, etc.  All things typical. The busyness involved Hannah as she had school (at least the days when it was not cancelled due to stormy weather), and a few Christmas functions of her own.  She was happy, fulfilled and engaged!

But then … it happened.  School ended and the festivities of Christmas began.  The thing about me is I am (in some ways) extremely optimistic and forgetful.  I forget that large, loud gatherings are not only difficult for Hannah but becoming increasingly nearly debilitating.

So we struggled.  Struggled with balancing us having a good time at whatever festivities we attended and seeing Hannah slinking back in her chair with a look of pain and begging words “I need to go home”.  While Hannah loves all her people – she does not love noises.

I’m not talking extremely loud at any place – just regular laughing, kids noises, larger amounts of people talking, etc …

Nobody likes to see their child in discomfort, anxiety or pain.  Whether we understand the pain or not when a child suffers a mom (in this case) suffers.

We balanced pushing Hannah to stay ‘a bit longer’ at each festivity while trying to make things better for her.

And then the straw for the camel appeared.

I dropped something off at my friend’s home where some children were playing.  Hannah immediately anticipated the shrieks, screams and noises that young children bring and sunk into her survivor mode – look of discomfort, falling down in her seat, asking to go home, etc. within minutes.

Getting our boots on and being in a ‘safe space’ I snapped.  Irritated that all the work I have done to get her to cope in life had only got me this far, unable to enjoy time with people I love without having to constantly baby the noise factor.  I said words to Hannah that were not kind and helpful.  They may have included “buck up” and “ruining things for me” … I will try to forget.

We got home and Hannah went upstairs to get ready for bed.  I went to see what was taking so long (this time) and saw Hannah.  She was in the washroom, unclothed and weeping.  Sobbing uncontrollably.  Obviously unable to tell me anything about why she was crying.  (She lacks the ability to communicate to this level of sophistication.)

As any good mom would do I assumed this was due to me.  That I was irritated with her and snapped at her.

The truth is it was likely a mixture of a week’s worth of her trying to cope with the loss of schedule, the noise and activity level that was too much for her and now knowing that Mom was disappointed.

There are many awful things about me.  But there is good in this special need mom that snapped at her handicapped child.  I can own things.  If I goof – I own it.  And move forward.  Moving forward is what has got Hannah to where she is.

Later on that evening Hannah had stopped crying (thanks to an episode of “Clifford the big Red Dog”) I tucked her and her new Clifford stuffed toy into bed.  “Good night Hannah – I love you” I said to her.  Hannah responded “Why are you crying?” in an echolalic fashion.  We will just chalk this day up to a ‘not a win’.

I picked up my book “364 Timeless Wisdom for Modern Times” by Tom Jackson.  His thought for the day – “Your higher goal will be achieved more quickly if you spend less time thinking about how, and more time thinking about WHY”.

Already feeling daunted by the never-ending, probably no easy answer on how we can work with this behaviour, what tools may be used to help, etc. I felt a small bit of empowerment that we will do this so Hannah can have a better life.  This is why.

Only a few more days of the lack of schedule – we can do it.  I look forward to the days of consistent adult day programming confident that we made the correct decision for her.

(For interest sake I took a peak at the next days thought for the day by Tom Jackson.  “No need to teach kindness.  Just be kind”.  We’ll just put this into the category of the day that is a ‘not win’).

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The suck-o-meter

 

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There it was.  On the calendar.  “Hannah – dentist.  2:50”.  The suck-o-meter for Hannah and for me was at a raging 10.  For Hannah it was for a plethora of reasons including a debilitating fear of doctors and procedures stemming from month 3 of her life and for me seeing her debilitating fear of doctors and procedures stemming from month 3 of her life.

It started when Hannah was at month 3 – pneumonia and a heart murmur.  Holding her down, this screaming baby, who learnt to fight so quickly.  Fighting defects, fighting caregivers and parents who were trying to help her, fighting procedures.  Left, right and centre.  And as we held her down a bit of my soul escaped each time.  I loved her enough to know that this was what was best for her.  Each time.  Every needle, every blood drawn, every minuscule part of her body checked, every look, every necessary touch, down to every walk into a clinic or hospital.  All forced.  All fought.  All held down.

We did it and as she screamed and fought I put on my big girl gitch and barreled through with her.  For her.  Her severe autism prevented anything from getting through to her.  Coaxing, explaining, lightening the mood, treats, puppets.  You name it – we’ve tried it.  The only thing that would work is just to do it.  Then to get her out of the situation as quickly as possible.

The past few years we are grateful that the need for any medical appointment or procedures is declining.  That is seemingly part of our past.  My past.  But what I didn’t know what was lurking was post trauma.  Grief.  Rage.  And deep sadness.  That I had to hold Hannah down during all of this.  That she would view me as someone who didn’t ‘help her’ but rather that I was part of the problem – that I held her arms and legs and head as she fought.  Picture Hannah’s fight varying from falling down to sweating, redness in the face, kicking, screaming and thrashing.  From month 3 to age 19.  It is one thing to hold down a baby but quite another to hold down a 19 year old.  When we applied to be her substitute decision maker we actually had to include getting permission to ‘hold her down’ during procedures.  Which we were granted.  Another 10 on the suck-0-meter (but we are grateful that we got the permission – without it the suck-o-meter would be off the tracks).

Hannah’s sensory issues in her mouth are huge.  We try twice a day to brush but we hardly can even touch a tooth – or we just don’t know.  The best we can do it try and to keep her diet good.  Any dentist that would attempt to look in her mouth would have to agree to ‘hold her down’ and dentists just don’t do that.  Really.  They don’t.  We have explained her issues, we have begged, we have gone to appointments thinking they would hold her down just to look and been frustrated that they will not once we get there (my favourite).  I was ready to give up and to take her to a specialist with a general anesthetic (her heart, lung and trachea issues make sleep sedation complicated).

I was explaining this to my own dental hygienist – not asking for anything just explaining my frustration hoping she had some ideas.  And she did.  She had a dentist in mind that may be able to work with me.  And she got to work – and it was arranged.  Hannah would sit on the chair and the dentist would try her best – pushing Hannah’s comfort level – and JUST LOOK AT HER TEETH.    Just look.  Any indicator of anything would mean a specialist with a general anesthetic.   We also understood that things may be missed at this appointment as Hannah would not cooperate and would fight.

I was grateful for this appointment however as the days came closer sadness, anxiety and memories of holding her down flooded me.  I didn’t want to do this – not even one more time.  The fact that this was not serious was not lost on me – I was just done seeing Hannah in fear and to have me be a part of the fear.

I asked a few people to stand with me in support and prayer.  A wonderful friend asked – and asked again and again if I wanted her to join us.  I begrudgingly accepted – Hannah is my ‘problem’ (or rather her issues are my problem) and I find it very difficult to accept help with her issues.

The day of the appointment came and I felt calmer that day than in the past.  I said  nothing to Hannah about the dentist until the time came close.  I briefly mentioned the dentist – to which she gasped – but then went on and on about the fabulousness of the rest of her day – which she chose to obsess about as it was so fabulous!  (Included pizza and her older sister).

A small dose of a relaxing medication took a tiny bit of the edge off, the dentist walked in without her white coat, my friend (Hannah’s friend) and an additional friend (Hannah’s friend) who works at the office as a dental assistant all made the situation better for her.  Hannah fearfully got on the chair and put her head back.  I was so proud – she did it!  She even partially cooperated!  The dentist got a ‘good enough’ look as Hannah only slightly fought – but only with her head!  There was no real need to hold her down!!  From what she could see her teeth were good!  (We understand that this was not a thorough examination).  Hannah wept as she was immediately excused from the chair and my friends (good cop style) whisked her off to find a treasure in the waiting room (OUT of the office!).

Unbelievable good news – this was the best case scenario!  So what started out as a 10 on the suck-o-meter ended up at a 0 on the suck-o-meter!  We get by with a little help from our friends – and prayer, and good fortunate and persistence and connections and a village!

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I know, Sweetheart, I know

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“I love you” music to a parents ears. No matter what form it comes in

 

We all need to hear it.  We all need to feel it.  And when your child cannot tell you and show in you traditional ways there is a grieving process.  Experts in the 1980’s blamed autism on ‘Refrigerator moms” which thankfully has been debunked.  In the early years of severe autism we wondered what was ‘wrong’ with our child.  With limited and odd speech patterns, the inability to touch, hug, kiss like typical kids do and the absence of sharing in thoughts, play and desire to be together (just to name a few) one quickly realizes how love is shown and how it is painstakingly missed when it is not there.

But somehow throughout the years we knew she loved us.  Whether it was … no there was nothing … likely only the fact that we knew how to reach her best.  And that best?  Well it wasn’t that great.

As we started our intensive  ABA programming Hannah’s life changed.  Odd, disruptive and debilitating behaviours were soon replaced (with tonnes of work) with a smile, a twinkle in her eye, short successful outings, and a bit of language.  Three times in her life a quick, short rote sentence independently has been heard, “I love you”.  We don’t know what she knows about love, if she meant it or if she was merely repeating it echolalia style from a television show.  I can tell you those three times have prompted a big emotion in me.

You don’t know what you got ’till it’s gone.  Or you don’t know what you’re missing ’till you’re missing it.

Love from a child comes in many forms like I mentioned.  A simple touch, a request for a story, a huge hug, a small hug, a hand held, a cuddle, requests for play and time together, etc.  But when you have a child who is functionally non-verbal but can function enough to scream that the hug you try to give “HURTS!” – it hurts.  And the functional non-verbal is in full swing when during the day the requests for together time is absent.  And you are only dealing with behaviours – it hurts.

And it doesn’t matter if you have love in your life from others.  While you wouldn’t trade the love from others for any amount of money it. doesn’t. take. away. the. pain.  The pain that raising a child that cannot show love (in traditional) brings.  What parent does not ache for the one lost sheep while being surrounded by a flock of many?

Now if you have a child who you are at presently at odds with and aren’t feeling the love?  Please don’t play the level the playing field game.  Not the same.  I can’t even …

As the years have come and gone  we are finding less behaviours and more stability.  And a feeling that she loves us.  It is a look that she doesn’t give us – eye contact is rare – but rather a look away from us followed by a self hug or a few jumps.  And it is a feeling – a belief – a hope – a knowing.  Faith.  Faith that she loves us and somehow knows that we love her.

When Hannah was exiting middle school we collaboratively agreed that we would end the program on teaching Hannah to print.  It was going nowhere fast and typically those with autism have extreme difficulties with fine motor skills.  This was truly okay with my soul and knew we had given it an honest, legitimate effort.  The following fall the question was asked “I know we decided to end trying to teaching printing … but is it okay if we try a bit more?”

Now there may be some in the school system that have had issues with us being too pushy with Hannah’s needs and view us and have labelled us as “Difficult” on our charts (there is a Seinfeld episode for every life event).  Or maybe not.  But in reality if I see that Hannah is being educated appropriately I will be the easiest parent ever.  Like really.

So because I respected and believed her school staff that there was a shred of hope to continue printing I had no issue with continuing trying to teach.

I’ll just let you now right here that if you are waiting for a Hallmark movie ending to this blog there is none.  For a great many people with autism or caretakers/parents of those with autism life is difficult.  And if there is not an effective plan in place?  Then the risk is really difficult – life changing-ly difficult.  Medication all around difficult.  Therapy/counselor difficult.  Family break up difficult.  And the minuscule wins will never be shown on youtube or end up in a Hallmark movie.  They will be celebrated quietly at home because nobody else will understand.  That is the real truth for many.

Hannah did not start printing massive paragraphs proclaiming her love to us, nor did she explain in great detail what it was like to be autistic or anything remarkable.  She just started with tracing and soon after copying.  This came with years of blood, sweat and tears (probably literally …).

To date Hannah prints a sentence or a few sentences at home with the help of her AMAZING SCHOOL TEAM.  Together they decide what she wants to say by offering choices and Hannah decides.  Her printing has become really small and really neat.  From time to time I will get a sentence home that says “I love you” and it melts my heart every time.  Yes I do want to hear it!

 

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It’s been an honour, my dear

pie  Making a pie together.  Hannah LOVES pie!

What an amazing summer we have had.  In fact I don’t remember ever having a better summer.  Like we have heard on the television  over and over and over again (Autism style) from Teen Beach Movie 2 it’s been “The best summer ever …”

Hannah’s day’s have been filled with fun, with happiness, with late night’s (“I’m not going to bed”), a wide variety of activities and people and best of all we nailed an overnight incontinence issue.  I believe Hannah will have a rash on her back from all the self hugging she has been doing.  Seeing this is music for my soul.  Who doesn’t want to see their children happy?!

It has not always been this way.  Summer has been burden-some in the past with trying to find meaningful activities with me at home and with respite workers.  Trying to dodge the illnesses that would invade her body and when they attacked trying to help her cope throughout whatever afflicted her.  I remember.  I remember clearly.  Not that summer has been worse for her health but rather remembering high hopes that I would have to fill the glorious summer days.  Then being really, really disappointed.

When it comes to Hannah the last words I would use to describe myself is grace.  I have accepted nothing gracefully.  When her life slapped me on one cheek I did not turn the other cheek.  I whined.  I complained.  I cried.  I had a never ending self pity party.  I still have people in my life – they deserve a medal!  However in my defense through the whining, the complaining, the crying and the self pity party I worked for her.  But never quietly into the dark night.  Raging is more like it.

They say hindsight is 20/20.  I wish I could have had a crystal ball and have known that it was going to be okay.  I wish I had known that the summer of 2016 would be like this.  Even an inkling that this was a possibility during those dark days.  And before you think or comment “Ang don’t be so hard on yourself” – I’m not … This lesson has not been lost on me.  It hasn’t been found either … it is in the works.  The lesson is something like this … it’s life.  Life is a journey and changes are always happening.  My challenge is to find peace in whatever life throws in our direction.

So for today I will continue the last weeks of summer knowing that next summer her care will be with the adult day program and that maybe I am done.  I will not complain about mosquitoes or rain.  Because I am grateful.  I am grateful for my healthy daughter with autism who is happy and well.  I am grateful that God continues to grant me grace and this beautiful life.  I will not take this for granted.

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