Matching tat time

I was enjoying an episode of “Modern Family” on the television.  It was the episode where Claire and Haley were fumbling up the process of getting matching mother daughter tattoos (yes some alcohol as involved).  Thoughts of my eldest (my typical learning) daughter surfaced.  Thinking how much fun, however highly unlikely, it would be to get matching mother daughter tattoos.  As Emily lives an 1.5 hour away from us,  like any good mom, I texted her and suggested it.  As one does.  She texted back saying “Let’s do it!”.  Funny joke I thought.

For fun we started a mother daughter Pinterest board.  We came up with a variety of sassy, sappy, cool and lovely tattoos ranging from style to body placement.  All in fun I thought.  When suddenly I realized that hey maybe we were serious.

Turns out we were serious and we planned to go ahead.  Now to find the perfect design.  Then Emily found it.  “Ohana”.  Hawaiian word for family.  Our family has been to Hawaii a number of times and we love it there.  The people, the climate, the relaxed accepting atmosphere makes us feel at home in Hawaii so to have a Hawaiian word as our tattoo seemed very fitting.

In depth the word Ohana is more than blood family.  It extends to connections that are intentional, and that members are bound together, must cooperate and remember one another.  Disney’s “Lilo and Stitch” brought it to another level saying “Ohana – no one gets left behind or forgotten”.  Your tribe.  Your people.

This was the perfect tattoo for us.  Beyond the obvious meaning that we love our family the idea that Hannah will one day need additional Ohana.  That her Ohana will need to be beyond blood family.  We will not be here forever to care for her.  One day her community of people, her Ohana will be more paid workers than not.  That is so difficult for any special needs parent to wrap their minds around but it is a reality.

As we designed our tattoo I knew I was going to be super. fussy. on what was tattooed on my body.  Super. fussy.  We found a local artist to come up with a page of fonts of “Ohana” and together we chose one!  #Maehandmade

The idea that in our family no one gets left behind is a constant.  We are constantly trying to ensure that Hannah can join in whatever we do.  We are trying to modify activities, or trying to find outings that would be suitable or at least attainable for her or find little snippets of activities that she would enjoy within our activity.  Her idea of fun is very different than ours.  So in keeping with ‘not leaving her behind’ and knowing a tattoo was not an option for I found a jewelry maker on Etsy to take our design and make a bracelet for her.  (Byron got a golf towel).  We are the Ohana family!  (But Emily and I are the coolest!).

The day of the tattoo appointment came.  Now yes I had heard that these things can hurt but really my mind was so preoccupied that holy shit we were getting a tattoo and that the design be perfect I kind of forgot about the pain.  Emily said it didn’t hurt as bad and I thought it hurt way more!  Right on the bone.

We were thrilled with the end result and that now, according to the tattoo artist. (a fellow ABA dad) we were a part of a ‘club’.  I did feel a little bad ass the rest of the day.

This morning we together with some of Hannah’s school staff, our family service worker and the staff at her new adult day program met for a transitional meeting.  Here we discussed Hannah history, our dreams for her, our nightmare that we would never want to see, her strengths, and goals with timelines.  We had the opportunity to write on a sticky note and place on the board a word to describe “Who is Hannah?”  Personable, responsive, fun, loves to tease, friendly, loving, sassy, someone who makes me smile, loving, teacher.   These are just some of the words her current people had for her.  It swells my heart to see these words written by beyond Byron and myself.  (In all honesty ‘sassy’ was up there a few times!)

This is the first step in a stage of life that will perhaps see her to the end of her life (if she stays in Altona).  Now I’m not really going there … just a knowing that no matter how hard we try we are not immortal for our special needs kids.  That one day we will have to hand over the reigns to others.  We hope she will always have love in her life, safety and that she will feel she belongs somewhere.  Don’t we all want this beautiful Ohana?

 

Dear me, it’s going to be okay. A real mother’s day post.

Something dawned on me today in terms of writing this blog.  That I should focus in on a point.  Now I know that people apparently “like my blog” and have found our book and the blog “to be very helpful” or “inspiring” or “educational”.  Be that as it may when I started the blog I had a list of topics that I had wanted to cover.  And that list has been covered a long time ago.  Since then I have written about topics that relate to our autism life that have spoken to me as they have come up.  So kind of sporadically.  Seeing this is the weekend of Mother’s day what better topic to talk about.  But I struggle this year … what’s my focus?  Who am I in this journey?

My mind continually goes to young moms of special needs kids.  I remember 28 year old me.  Young, autism virgin, afraid, lonely, and without a mentor to guide our special needs path.  My heart continually goes out to younger moms and what are their needs?  How are they hurting?  How are they rejoicing?  How are they advocating?  What are things like for them as woman and mothers?

I wish 48 year old me could have been a mentor to 28 year old me.  What would I tell myself?

I would tell you that it’s going to be hard.  There are going to be days that it will feel like hell.  There will be days that you will feel you cannot get through one. more. second.  That you will feel angry and bitter.  That you will lose people and not gain others because not everyone will be able to be your village.  That yes you will be doing a lot of advocating and that will not always make you popular.

I would tell you that you will be sad.  That you will look outside and see children playing and then look at your daughter – who you love as anyone loves their child – and see her piling duplo alone.  Even thought the duplo box says age 1.5 – 5 years …. you will want to tell the duplo box to kiss off  You will want to tell a lot of people to kiss off.  Click, click, click, click goes the duplo.  Click, click, click.  Day after day, week after week, month after month year after year and now decade after decade.  Click, click, click, click.  You will be sad that your child has missed milestones and not even aware that they are missed.  You will cry for her loneliness.  You will cry many tears.

You will be afraid.  You will wonder and worry about her future.  You will wonder and worry if she is well as she cannot tell you.  You will wonder and worry if the funding that has given your child a life will continue or rather how we will survive when it has been cut.

But then you may be surprised.  You will be surprised at the wonderful people that you will meet in among everything.  You will be surprised at the people that will step up and show caring for you.  You will be surprised at the people that will show love and caring for her.  Workers and loved ones.  You will be amazed at the strength you will feel when you feel supported.  And don’t worry 28 year old me – they will come.

You will amazed at your strength.  Even though confrontation is your least favourite thing – you will do it.  Why?  Because you know she’s in there and you know how to get her.  You know it.  You are her mother and you will find this God given strength to fight to the ends of the earth for her.  You may hate every minute of it but you do it anyway.

You will experience joy that you never knew existed.  You will work hard for her and it will pay off.  You will rejoice because she will achieve things that are seemingly small but it will take a team of people to teach her and coach her along the way. There will be many ‘small things’ but you will know how much work it took and you will be grateful.  You will know gratitude like you never could have imagined.

You will find love.  You will find the comradarie of other autism moms.  Woman that will be a lifeline.  Do not worry – they’ll be there.  Just breathe and give it a moment.  This thing called the internet is around the corner.  These woman will kick life in the ass along side you.  For forever.

So where am I in this special needs journey?  I’ve done the anger, bitterness, sadness and fear and while those emotions are still prevalent at  times it’s not what’s driving me.  I’d like to say contentment but more likely it is surrendering to the exhaustion.  In that surrender I also realize that Hannah is happy.  Maybe a little surrender-age is okay.

To all mothers of atypical kids – just know you are not alone.  Know that whatever fight you have for your child is the best you can do and do not doubt yourself.  Know that God’s grace and provisions are there for you no matter what the situation is.  Know that it is okay to not understand.

I wonder message 68 year old me has in store?

Happy mother’s day my special needs sisters.  Much love to you all.

 

 

 

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.

Happy 20th Hannah Banana

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.

Mourn and move

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.

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’).

The suck-o-meter

 

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!