Why I am so angry. A nasty girl’s rant – caregiving style

If I were in the position to be talking to a lot of people right now the question may be posed to me, “You sound a little angry, Ang.  Why are you so angry?”  However we have been social distancing here to the best of our abilities so I have not spoken to a whole lot of people face to face other than 6′ or so apart on the streets of our town.  I think most people are experiencing the emotion anger right now so I don’t think I would personally be called out on my anger.  But there is one person that is calling me out and that is by someone whose name rhymes with Blang.  It’s me … Ang.

I have been raging, fuming, crying in frustration over sightings and hearings of people continuing to congregate. Congregating despite knowledge being fed to us spoonful after spoonful – we are getting obese with effing information.  We. know. we. know!  And yet some do not either choose to believe, don’t think it can happen to them, or don’t understand how washing hands and staying a safe distance from people and touching objects that can carry a virus and continue to congregate in small or large groups.

There has been a lot of news and social media stories on boredom and schooling students at home and concerns over these topics.  I am not raging over this.  As a caregiver our take on this pandemic is that it hits so close to home we are putting a house plant in the corner of it.

When Hannah was three months old heart defects were detected.  From there on her life (and ours) quickly went out of our basic control and into the arms of medical help.  As she grew older in age her body struggled with continuous heart, lung, trachea issues and then scar tissue – a side affect from one of her heart surgeries.  The trachea injury reeked havoc on her little body for years creating an un-human like sound as she breathed which got even more horrendous when the regular trachea infections came upon her.  With all of this happening to her her basic immunity just seemed to be the pits and she was a little sitting duck-ish in terms of all the things she would catch (she once had cellulitis in her toe).  When she would catch a cold, or bronchitis or pneumonia it was heart-breaking to see and traumatic for us each time it occurred.  But this was her general life.  Our schedule revolved around her health.  Her sister’s life revolved around her health – though we did the best we could to keep going on as good as we could.

I would say generally the first eighteen or so years of her life her health was first and foremost in our attention toward her aside from her autism which was a whole other world.

The last five years we have enjoyed her stable health and only see mild affects of her first eighteen years. But the memories of her breathing, or not breathing, of seeing her suffer are not far in my mind.

There are so many parents like us for which this story will resonate with.  When you are a caregiver of a sick child it changes you.  Having your child survive becomes your only goal.  This is only our story.  There are so many families that have it worse and are continually caring for their child.

Hannah’s day program has been suspended.  Her 40 hour/month respite – which for her was Special O with a visit to a friend’s to watch wrestling, coffee time with friends, yoga with a walk after and music night at a friends was suddenly taken away in a matter of days.  She became full time at home girl with me as her caregiver.  My job as her mom is to keep her safe and distanced as much as possible.  Every day she asks me, “Mom and dad will take me” meaning she wants to go out. We are both “working at home”.

When the news and policies were changing in the beginning my first worry was boredom for me and how would I engage Hannah every day without any respite from workers or grandparents.  But those worries soon ceased when we just began doing it and it was successful with a lot of work.  It felt like we were a world away from the coronavirus and it really didn’t affect us – but of course we would comply.

Suddenly things changed when the virus was being community spread.  It hit me that yes she and other people  like her were extra susceptible.  This has scared me so much.  To go back to the time when her respiratory issues were so bad – I could not even fathom it.  I authentically worried as well for people like her that the outcome would be grim.

Once I got a hold of those emotions and continued doing what Dr. Tam continuously said I felt rather at peace about her health.  But then something new hit me.  What if we as parents caught the coronavirus.  What would happen to her?  If she had been in a home with two people infected she would likely be getting it as well.  Where would she go?  Who would care for an young woman with autism fighting this deadly virus?  There are no words to describe this but to say it authentically has sometimes felt like life or death.  Families like ours have been absent in any emergency plan.  I suppose it will be up to families like ours to continue squeak the wheel.  While I still do not have an answer, I do know that Hannah has many loving friends, family and professionals in her life that she would be cared for if we were too sick.  (In the night my best case scenario for this would be that us three just got it together and we could care for her while being sick).

While workshopping all of these emotions I have had the misfortune of reading comments on social media and am so disheartened by hearing some people’s selfish and hateful thoughts.  Comments like, “Why are we shutting everything down basically for people who don’t contribute to the economy?” (I assume meaning the elderly).

After being angry for some time it hit me.  Seeing people congregate and take this lightly feels like a direct hit for me.  A punch in the gut.  It is like they are saying “We care more about getting out and doing our thing than we care about people who are medically sensitive”.  While of course no one is saying that – but that is the message as a caregiver that I receive.  It is the herd mentality.  This. only. works. if. we. all. who are able to. do.  it.  Not doing it is demanding that the team take it for you.

While boredom and fear of not using my brain for things other than “how can I keep Hannah engaged” are there it seems luxurious to think that not social distancing is even an option.  In my world I know too many people that this would affect.

What’s next for me is listening (and probably crying) to Les Miserables and hearing the message again of how angry self righteousness never wins and grace always perseveres. (But I will have my phone on the 311 speed dial!)  And I will keep speaking out.

Autism awareness day, 2020. A sad, fearful and somewhat boring time

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Everyone is processing this time differently.  Whether it is loss of work and income, working from home and navigating all that entails, trying to navigate quarantine home school or the worse case scenario personally having to deal with you or a loved one having covid-19.  Here is a mash up of what our day living and supporting autism during the pandemic and keeping social distancing.  I want to note that it is not only about autism awareness but also autism caretaking awareness and all that entails to support someone with autism or a disability in general.  I suppose my goal in this post is to show how we are more alike than we are different.

Hannah’s alarm rings in the morning.  Even though we have nothing pressing up and nowhere to be I find it good to let her sleep in a little while keeping with a little bit of structure.  I have already forgotten how to say “hurry up Hannah” because we are never running late.  For anything.  Hannah gets dressed with the help of me.  She has made some gains from last year in her ability to put some clothes on.  And now we have time to allow her to “safely struggle”.

I am mindful of one of my goals for her which is to see her smile and laugh at least once a day.  I can see how depression or a lack of an enriched life will affect her.  So we do our best to keep her spirits up during this time.

She is dressed and excited!  She’s so happy in the morning.  It is time to get breakfast which is water, a granola bar and a small bowl of frosted mini wheats.  Together we get her breakfast ready and set her up to watch “Big Daddy Tazz” read stories live on Facebook.  I manage to quickly write in the coments, “Hello from Hannah in Altona” in hopes that he will see it in time and verbally greet her (as he tries to greet listeners each time).  I nailed it!  Getting her greeting in on time we hear a cheery “Hannah!  Hannah from Altona – hello Hannah!”  Hannah smiles the biggest smile and hugs herself.  Thank you Tazz!  Smile for the day – check!

After her breakfast is done we have time for Hannah to clean up a little more after herself – and she does.  She is learning during this time to load the dishwasher the correct way – or rather my way – which is the same :).  We continue on with self-care skills again noting we have time for Hannah to be involved more in the clean and tidy up department.  And she’s rising to the occasion.  I feel hopeful.

Once she is dressed and ready it is downstairs we go.  We head down to the television where Hannah has a tower of shredding to do during this time – dropped off by a few kind people to help us out.  I give her a small amount of shredding to do and find a television show for her to watch.  This new television does not have a power button on the television and power is relied on the remote.  We had been teaching Hannah to use the remote and she can almost independently do it!  Toy Story is on – one of her favourites and she is excited to start shredding and television watching.  I go upstairs and we both enjoy a little bit of separation form each other.  At her day program she is sometimes lovingly called, “the lean, mean, shredding machine” however I see no signs of that at home 🙂

I turn over my paper calendar and note April has nothing on it.  Nothing for Hannah – special Olympics, coffee times accompanied by visits with friends, yoga and the music night she attends at a friends is all cancelled until it is safe.  This means no respite people hanging out with Hannah.  I miss them.  They miss us.  Hannah misses them all, her people and the plethora of activities that have been planned for her.

Lunch time comes and I make her lunch without my helper.  Once Byron comes home for lunch I quickly dodge out of the house to have 20 or so minutes of freedom.  No autism, no dog.  Just me and my podcast.  I suppose Hannah gets freedom from me as well.

After lunch Hannah loads up the dishwasher and assists in clean up.  She is getting so good at doing these tasks with assistance.  We get our jackets and leash up our retriever cross.  “Such a good dog” we both say as we pat our Molly on the head.  Molly is getting a lot of walks during this time.  We start walking and I ask Hannah if she wants music.  She says yes.  I ask her if she wants to hear Abba or the 2 cellos.  The answer is always the same. 2 cellos.  We walk as the 2 cellos play “Thunderstruck” like an electric guitar.  She loves it and I don’t care what people think.

It has been garbage and recycle day here so I ask her to bring in the garbage can and recycle.  She brings in the recycle can but when she goes out to get the garbage can she takes a long time.  When I go to check on her I see her angrily coming into the garage with lots of mud on her face.  Not having savvy enough verbal skills, I am uncertain as to what has happened but it looks really funny and I laugh at her.  My reaction could have gone both ways for her, but today it went to the funny side and Hannah laughed and said “It was very muddy.  It was very muddy.”  What happened to her will remain one of life’s mysteries.

We note during our walk that people have put teddy bears in their windows.  “Awww cute” Hannah says as she hugs herself.  When we get home we find Shrek and tape him up in a window peaking through.  I am uncertain if this will be tolerated but Hannah is mildly amused.  She does tell Dad that ‘Shrek is in the window” later.

She gets some more TV time so I put on Netflix.  I. am. so. tired. of. Shrek.  While I love the sarcastic green ogre we’vejustheardenoughofitall.  But whatever – we can do hard things.  My pity party ends soon as I hear her laugh!  Laugh for the day – check!

Now the excitement is really ramping up because it is laundry day.  Years ago during our ABA years our tutors worked diligently on teaching Hannah how to put her clothes away.  This was time well spent because now Hannah is borderline obsessed with putting her laundry away.  During this time we have been working on extending her skills to loading and unloading the washing machine and dryer as well as categorizing and putting away all the clean laundry.  She still needs a lot of help but this is a task that puts a hop in her step.

We stand in the kitchen and hear Law and Order on in the background.  I hear one of the lawyers on the show say “I call to the stand Rebecca Stain”.  Knowing that Hannah loves words that begin with “st” I jokingly say to her, “Hannah – stain”.  Hannah laughs (another check) and I say “Oh dear Hannah – you will send me to the cuckoo bin” to which Hannah whispers “bin” to me.

Hannah gets to watch a little more television until supper time.  But no Shrek.  After supper we get on our yoga attire.  The yoga teacher from Hannah’s yoga class has created online streamed in yoga.  So her and I set up our yoga mats and do the yoga class together in our living room.  She does well and loves every minute of it (so do I!)

I arrange ahead of time to Facetime one of our former respite workers and her mom who are also friends of ours.  They always bring a huge smile to Hannah.  We Facetime with the two of them hearing and chatting about our day and Hannah chirps in “It was very muddy” which is her way of asking me to tell them her garbage can fiasco.  We all have a good laugh and I am grateful for her people.  And I really miss them all.

Hannah has really been enjoying her showers so we shower her up noting there is no more steps to teach her her.  While she has some skills in this case I believe we have reached our ceiling.  And that is okay.

Wednesday night is Survivor night so we get our popcorn and watch the television show – it really is a highlight for our week.  After some clean up Hannah gets out some puzzles for her and her dad to do.  The television is on and between that and social media I note that families like ours (and there are many) are neglected in  the media.  There is so much important talk about coping with kids at home, safety and boredom but no talk about caregivers for those living with disabilities in a residential setting or at home with their parents.  It is like we do not exist in the media.  Part of that is really isolating but another part knows I have my own tribe.

Hannah goes to bed around the same time we do and it is all good – for now.  I feel I am on auto-pilot in caring for her mental, physical and social well being.  Knowing that aside from her autism she is vulnerable due to her respiratory and heart defects so I guard her with my life.  Seeing people not social distance makes me even more afraid for her and those vulnerable like her.  But not great thoughts to think of before going to sleep.

She goes into bed waiting to be tucked in.  We turn on her CD with her 2 cellos playing.  “Good night Hannah.  Love you”.  “Good night” Hannah says, “I’ll wake up in the morning.”  “Yes” we say, “That’s a good time to wake up.” As we walk out of her room she continues to echo, “I’ll wake up in the morning.  I’ll wake up in the morning.  In the morning.  ng ng ng”.  My brain is tired from hearing phrases over and over again all day.  But seeing her happy and healthy keeps us going.  We are grateful for our provisions and that is what propels us through the day.

Seeing God and goodness through gummy treats (A non-COVID-19 post)

If you enjoy being lambasted only with constant COVID-19 stats and doom and gloom news casts then please pass on this post.  At first I felt it would feel inappropriate to write about autism life during this pandemic but after some time of not being able to practice my social skills …. let’s just say my already poor filter is a little less.  Plus I am trying to focus on lights in my life.  So if you would like to read about church and children and Hannah then read on!

Hannah has always been welcome at our home church (Altona Bergthaler Church).  Congregants have gone out of their way throughout Hannah’s life to educate themselves and follow through with inclusion so Hannah could participate in Sunday school, children’s programs and youth programs.

One small component of this inclusion includes something our church offers during the worship service called “Children’s time” which typically (okay always) involves a treat for all the children at the end.  To hear the excited sounds of children running to and from children’s time is a highlight for many of all ages!

When Hannah was a child she attended children’s time with either myself or Byron accompanying her and managing her autism during the story time.  As time (and enough work) passed Hannah was able to go to children’s time without us as parents but rather with a friend – close friends of our’s daughter – a much younger girl than Hannah.  Because this friend grew up knowing Hannah and her parents educating their daughter on inclusion, this pairing at children’s time was effortless (at least in my eyes), really, really beautiful and heart-warming.  Together Hannah and her young friend would come back from children’s time with their yummy treat and Hannah was happy.

As time passed Hannah became to old to attend children’s time so we decided to her keep her back (she naturally has outgrown many things) and she watched the children from the pews running to and from children’s time happily sitting down with their treats.  Hannah’s younger friend continued going to the children’s time and started asking for a second treat – for Hannah.  Hannah soon learned that even though she did not physically join in for children’s time she was still included through the treats.  After the story Hannah would hug herself and vigilantly look around in anticipation to spot her treat being delivered to her.  “Queen-style”.

As even more time passed Hannah’s younger friend  became too old to attend children’s time.  No worries at all!  We looked to continue the tradition of treat bringing for Hannah.  Being a Sunday school teacher at the time I spoke to my classroom students often about loving and including those with disabilities.  The children soaked up my stories (or at least I tell myself that!) and agreed enthusiastically and sometimes worked out among themselves when I would seek out the treat deliverer for that Sunday.

One of our former EA’s attends our church and now has a young daughter.  This little girl is brave and loving and she regularly been bringing Hannah her treats. How beautiful to see all  the different children run up to Hannah and hand her the treat.  While Hannah is unable to rapidly accept the treat and say thank you (that is too overwhelming for her) she will manage to accept the treat, smile a huge smile and hug herself and quietly say “thank you” when prompted.  But the children know – Hannah’s smile and self hug mean “thank you”.

For this all I am grateful.  Grateful that Hannah has been included without question at our home of worship.  Grateful for friends that have brought up their children to include Hannah without awkwardness.  And while Hannah is often stared at in other communities by young and old alike, grateful for the children that show joy in handing Hannah her Sunday morning treat.  And grateful for the story-tellers/treat providers that hand over the extra treat for our 23 year old.

Matthew 25:40 lovingly tells us “Truly I tell you, whatever you did for the least of these brothers and sisters of mine you did for me.”  While I struggle with the phrase “least of these” I get the gist.  So while it may seem like it is only a $1.00 or so treat, it is so much more to us.  It is a gift that shows that Hannah matters and that this is important to her.  A gift that Hannah is approached and spoken to.  And to the givers – I see God’s love in you and your offering each Sunday.  I hope that they will always remember the joy that a pack of gummy’s can bring.

Goodbye old friend

 

 

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Hannah was diagnosed with autism late at age six.  In my opinion many factors contributed to this late diagnosis included her being female (the diagnosis of autism is significantly higher in boys), her heart condition that made her health first priority, lack of awareness and lack of resources.  The journey to this diagnosis included me gathering information via magazine or newspaper articles, television shows that I either recorded VHS style or were given to me VHS style or happen to catch at that moment and a family doctor that really listened to our concerns. Being the mid ’90’s there was not a computer or access to internet.

While we tried to sort out what was simply a sick child not playing or something deeper with her lack of development we noticed that Hannah really enjoyed one activity.  Creating towers.  It started out with wooden blocks then graduated to duplo blocks.  Hannah would make large duplo block towers, the towers would crash on their own or she would take it down and she would start again.  We attempted with her ABA program to show her other ways to build with duplo blocks with little success although the process in itself I feel is successful as it stretched her mind – and we all need to do things we do not enjoy just to see where our interests lie and do not lie.

Somewhere and somehow the duplo block towers transitioned to a “house” as Hannah called it.  A base plate with duplo blocks forming a square, which was filled in with duplo blocks and built up – filling it all the way.  For 20 years Hannah built duplo block houses.  She had a height in mind, the house would be take down and started again.  This became Hannah’s “thing” to do – her de-stress, her time to relax and enjoy herself.  Whenever Hannah was sick we knew because she would not have energy to play with duplo blocks.  When she regained interest in duplo blocks I rejoiced knowing she was on the mend.  Our new home that we built had a duplo block cabinet custom made with 2 containers that fit.  Hannah never really got over that her duplo blocks needed to be in two containers instead of one and her main goal became building enough to fit all unused blocks into one container.

We found ways to use duplo blocks as it filled her time and eliminated the need for us to provide activities.  We monitored how long she sat playing duplo blocks – sitting on the floor with a straight back, legs straddling the base plate.  What perfect posture.  We sometimes watched with interest and amazement how quick she was in assessing which blocks she needed and thought someone should be tracking this and seeing if there is a pattern.  She planned and cleaned up duplo blocks well.  After 20 years we had it working for us.  It was part of her – like a best friend, a partner, a soul mate.

Two weeks ago Hannah came home from work, had her snack and went to the washroom.  She went to the cabinet where the duplo blocks are stored and stopped.  She looked at the couch and said “There’s the couch”.  Confused, I asked her “Did you want to sit on the couch and watch TV?” To which she said, “Yes.  I don’t have time for duplo anymore”.

Concerned she was getting sick I set her up on the couch (remembering that we literally taught her how to sit on the couch to watch television) and watched her like a hawk.

Health wise she continued to be fine but daily she denied her daily duplo block building.  After a week or so of not hearing the clickity clack of duplo blocks I realized something in myself.  I missed it.  This had been a part of Hannah since I could remember.  What does it mean to take care of Hannah without the luxury of duplo block activity?!  What will we do to fill that time?  Her interests and abilities are not great.  I was surprised that tears of sadness, a little anxiety and wonder appeared.  I realized that she has outgrown things in her life – her blankie, thumb sucking and play structures.  Other things like “Barney” have forcefully been outgrown in her by me.

The weekend came and I worried even more – how would we engage her day without the 1-2 hours of duplo block activity?  I began putting her to work with extra errands around the home to which I was surprised that Hannah agreed to with different levels of happiness.  Could it be that she wishes to be more engaged in life?  Could she have hit the 1,000,000 mark of duplo block homes that it had officially expired?  We will never know.

For now she is happy and continues to tell us “She doesn’t have time for duplo anymore” and shakes her cute little head.  Sure would be nice if there was a “What to expect when parenting an adult with autism/special needs” book.  I would settle for a pamphlet, a leaflet, a paragraph, anything!!  It is strange how we take whatever weirdness is thrown at us and make it work.  I suppose that is called adaptability and we will adapt to this new normal.

 

This is just where we are at this Christmas

One of my favourite television shows is Law and Order SVU.  I have become one of those crazy people that not so secretly believes that Mariska Hargitay is really a top notch cop and she and all her other cop staff, including Ice-T are truly police officers and they may quietly have an acting career somewhere “out there”.  Sometimes on Law and Order SVU there is a hostage situation and Captain Benson needs to negotiate with the perpetrator.  One line she uses when things have escalated to a certain point is “This is just where we are at” meaning events have taken place and there is no turning back.  I like that statement.

Not to compare special needs parenting to a hostage situation but it resonates with me at times.  We cannot change this however we can work with the situation as is.

After experiencing a few situations that involves a regression in self care for Hannah my soul dropped and my gloomy predictions for the future went sky high.  Not a good combination and not a great ingredient for attaining the “perfect” Christmas spirit.

However once the dust had settled I can reflect on how Hannah is viewing Christmas and am in disbelief once again as to how far she has come.

For one she knows what Christmas is – not any deeper meaning that I am aware of but that Christmas involves her sister coming home, presents (she prefers the larger ones), parties at work and with friends, seeing extended family and time off from work.  These are all concepts that we never would have thought she could have as a younger girl.

This past week we her to the Winnipeg Zoo’s Christmas light walk.  Once again I was naive and forgot about Hannah’s sensory issues.  Thinking she loves to look at lights in the car around our town that this would be fun as well.  The children screaming in delight and frustration, the large crowd, and cool wind affecting her trachea and breathing.  Hannah marched through the light display with her toque down to the top of her eyes and the scarf up to the bottom of her eyes and head down.  We commented to her to look at the pink lights, the different animals, and flashing lights etc.  Nothing budged her head from viewing the march forward.  Until we got into the vehicle.  Hannah flapped her arms and hands, joyfully hugged herself and expressively said “Those were nice lights!  Thank you for taking me to the lights!” a couple of hundred times.  I forget that she likely sees things that we do not notice.  And because she does express herself in typical ways does not mean she is not enjoying herself.  Why do I always forget this?

The second experience that has me reflecting on where we are now happened this past week.  Hannah has received a lot of Christmas cards from friends and co-workers and has written cards to hand out in return.  We were driving to hand deliver a card to a friend of Hannah’s.  Eli is a tall boy and is loved by all who know him and Hannah enjoys being his friend.  All the way to Eli’s house Hannah was talking about bringing him the card and she was getting a little overwhelmed as we approached his house.  Flipping her hair in her eyes and fake sneezing (a sign that she is shy or engulfed in her emotions) she says to me “I’ll just stay in the car”.  Ha – nice try girl.

We ring the doorbell and Eli happily greets us, accepts the card and offers his hand in a handshake.  Hannah goes in for a side hug kind of bumping into him and the encounter becomes beautifully awkward and heartfelt!  To see Hannah value her relationships and take pride in something like card writing and card delivering is something we could not have imagined.

While I wish more for her at times when I see how much she enjoys life, has relationships she values, has meaningful activities and can be pushed just slightly above her comfort level I can naively forget about some of the hardships.

So as Detective Benson would say “This is just where we are” I will take it.  And wait for the Hallmark Christmas movies to go far away so Law and Order SVU can return as our regular scheduled program!

From our gong show family to yours I wish you the happiest of holidays filled with love, peace and reasonable life expectations.

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During our Manitoba provincial pre-election months I spent some time following a non-partisan advocacy group.  This group promoted better quality of life for those who live with a disability.  (Disability matters vote campaign – https://www.dmvote.ca).

One of the areas of concern brought up during this campaign to our provincial candidates is poor pay for those who are service providers.  Undignified wages promote a high turnover rate in the industry.

When I read the content of the campaign and I was stunned by one particular fact.  The amount of workers a person with a long term disability have in their lifetime is an average of 770 workers.  When I ponder on this number first of all I feel, yes I believe it and Hannah is well on her way to reaching 770 extra people in her life.  I also cannot help but feel sad for her.  That is 770 people that will become close to her in one way or another that will be gone.  Close in atypical ways, ways that she cannot control.  Ways that include and control her personal space, body, emotions, wellness, socialization, safety and every part of her day.

In the early years when we would bid “Fare thee well” to the rotating door of ABA tutors it was incomprehensibly difficult.  How could we manage without tutor “A” in our lives?  Hannah’s workers, with the work of appropriate hiring, ongoing training, relationship building have been top notch.  We placed one of our most precious beings in their care knowing she was going to be a jackass to them (Sorrynotsorry – beginning years of ABA/untreated autism were extremely difficult).  Trusting that they will learn the behaviour plan and implement it to help Hannah.  Feeling the guilt every time I could hear/see/sense Hannah was tantruming or having an autistic meltdown knowing I could not step in.  But the worst was giving someone else my biggest burden to handle for the shift.  How much harder it is to receive than give.  But they all did it and did it so well.  To see these young woman leave the position and move forward with their lives, or to have Hannah transferred to another EA, at first, was nothing short of devastation.

But we made it.  Again and again we were shown that there are hard working, caring and intelligent staff out there for her when we do the work and do it well.

But are there 770 of them?

We know that she has already been under the control of a person who is unsafe.  How do we go on knowing that the more people in her life the more she is susceptible to abuse and neglect?

I do not have an answer but I know that while there has been one unsafe person the rest of Hannah’s tribe have enriched her life beyond our imagination.  They have brought her joy, excitement, dignity and encouraged her development in ways I cannot do alone.  We all need a village.

Last weekend Hannah was able to attend a weekend getaway with a staff and two friends.  They crossed the border into a neighboring state for a weekend of swimming and shopping.  Needless to say Hannah’s perseveration on the upcoming event – about a month – was hitting the annoying level (all right it not only hit but exceeded).  She was so excited and by the time the departure date had rolled around she was almost blank of emotion.  She had tapped herself AND ME with the same phrases and the time had come for her to leave.

I remember years back imagining that someone would pick her up in the car and take her away on an outing that didn’t involve mostly me in the planning.  I remember just imagining this made me cry with relief.  But that was years back and so much has improved for her that when she left I just felt so happy for her and so grateful for the people in her life.  I could spy on her weekend a bit as one of the girls posted pictures on facebook.   It looked like Hannah was quite the life of the party and I am surprised I did not see a lamp shade on her head!

Every blog I write I try to have a point.  I do not know what the point is here if only that I am learning (again) that life is not black and white.  Yes there are dangerous people out there and no I do not have control (wait, what?)  During this time of pondering I also recall all these years I was encouraged by a counselor I saw years back to disconnect from Hannah in healthy ways.  Dammit.  I knew I forgot something.  So there goes my plan of never aging and definitely not dying.  And while there are unsafe people out there and no I do not have control, I will age and I will eventually perish.  I have to trust.  That is an extremely difficult concept for a special needs parent to grasp on to.

While part of it is trust another part is doing the work.  It was heartening to see that every political candidate was aware of the disability matters vote and locally the representative that won did visit our local program.  So now we hold them accountable. We ask the questions, “How would you like 770 people to shower you?  What are you going to do to ensure that support professionals get a wage that is comparable to others in a similar field?  What is your plan for those who will live with a long term disability – that they have a good quality of life?”

I write this blog Saturday morning alone.  Hannah has spent her first sleepover with her older sister.  Again, so excited and hitting the annoying level of perseveration.  Years back I yearned for respite beyond hours of others teaching or caring for her.  But for me true respite is to see her happy, anticipate events, and knowing she is safe.  Sounds like – what? – that is what every parents wants for their child.

 

 

 

 

Father’s day blog – by dad Byron

church picture Byron would say when the pastor invites us to bow to pray some do.  Others take pictures 🙂 – photo credit Andrew/Stephanie Rempel

Forward:  I often tease Byron that he lacks expression and the ability to be real with his emotions.  Often using descriptive words like “nice” and “good” I am constantly surprised and proud of him as he deals with people with calmness, diplomacy and a quiet(er) strength.  The last time he wrote the blog post his words were so touching and many people responded with warmth to his blog.  So I asked him again and was surprised that once again he delivered.  Take it away, Byron!

A Father’s Day Blog – Byron Loeppky

I have written one other Father’s Day blog and that was in June of 2017.  I was flying back from Europe after a 9-day trip.  T­oday I write this as I return from a 2-day trip to Omaha.  Apparently flying with no internet leads Ang to believe I will have some free time to write.  Anyway, here we go.

I wrestled with what to talk about but decided on two topics.  Gratitude and funerals (how’s that for a Father’s Day blog topic).  Let’s begin with gratitude.

I will list some of my areas of gratitude in our journey with Hannah:

  • Ang (CEO of Hannah Inc.)
  • Ang (Mother)
  • Ang (Wife)
  • Ang (you get the idea)
  • Emily (I am so proud of you)
  • Our church family
  • Our parents
  • Our extended family
  • Our friends (where would we be without you)
  • Our community
  • Blue Sky Opportunities
  • Special Olympic volunteers, athletes, and supporters.  If you ever want a good cry, go to a Special Olympics track meet.  You will never be the same.
  • Yoga class participants who treat Hannah like gold
  • Three wheeled bike that allows Hannah to go for bike rides with us (freedom)
  • Doctors and nurses (thankfully we do not know them as well anymore)
  • Government workers who support Hannah and us as we navigate the special needs world
  • Hannah’s music nights at a friend’s house
  • Eastview Care Home where Hannah and I visit
  • Our respite workers (you know who you are, but you probably do not realize how important you are to our lives)
  • Lastly but most importantly our faith. A Heavenly Father who provides, sustains, loves us unconditionally and gives hope and strength during all situations.  We have never been alone on this journey.  This brings me peace.

Other than our own family, I have not used names to protect the privacy of those who work for us and with us and support us in countless ways.

Now life and death has been front and center the last few years as  I have started attending far more funerals than weddings.  I guess it means we are at that stage of life.  Not a bad place but a different place.  However, each funeral (and it feels like there have been a lot in the last few years) is another reminder of our own mortality.  But beyond that it is a constant reminder to us as parents of a special needs child that we need to ensure Hannah will be cared for long after we have shed this mortal coil.

This weighs heavy on us as we try to anticipate what and when do we make life adjustments that are in Hannah’s best interest even though we as parents are not ready.  Let’s begin with the following question.  When should Hannah move out of our home?  Well one option is to wait until both of us have passed away.  Certainly takes the pressure off us to make any decisions but is not fair to Hannah or those left to care for her. This situation is now in crisis and the best decisions and opportunities rarely get made while in crisis.

Whatever we decide and whenever it gets decided it will be the best we could come up with under the current circumstances.  Just another bit of reality for us than is different than some others.

Father’s Day also reminds me of my own father who passed away 28 years ago.  It is sobering to realize that I have lived longer without my father than with him. I am almost 3 years older than he was when he passed away.  He remains a significant influence in my life long after his passing.  I hope I have had a meaningful impact on our children’s lives the way he had on mine.

To all the fathers out there, HAPPY FATHERS DAY!!

 

 

 

 

The hate letter

I have heard of bloggers getting anonymous hate mail or other forms of communication.  Communication that lets the blogger know everything they despise about them.  I just try to do my little thing ’round here and somehow “Life in the ‘special’ lane” has reached people around the world – small numbers around the world but it is thrilling for me nonetheless.  I never expected to receive  hateful, scathing communication because as my mom would say “Who couldn’t like you?”

I opened the letter and began to read.  No greeting (obviously she/he has not gone to letter writing 101 class.  A nice greeting would have encouraged me and then I could have been even sadder as I read the contents!).  It began with how fed up the writer was with me and she/he could hold back no longer.  The time had come … I needed to know.  She/he was sick of me and how I portrayed special needs caretaking life.  I was not up to par and my whining was something she/he could no longer tolerate.

She/he went on to give a nice list of all the material possessions and loving things that I had.  Encouraging me to “Look at yourself” saying that because we owned and had things that being a perma-caregiver should be a breeze.  Now before you start to say I’m being stalked you must remember that this is a small town and people know what people’s houses and vehicles look like.  But the writer can count up to three at least and noted that we have three garages.  (Shoot we thought that third garage was going to be more hidden!!)

The writer then changed tones and alluded that I in addition to being whiny and having lots of shiny things that I am mean and that I knew exactly what she/he was talking about.  Now they have over estimated the amount of drama I have with people and I can narrow it down thus pretty much guessing who the unsigned person is.  So not well played hate writer …. not well played.

The letter ended with a change in a larger font size and bolded to mind blowingly inform me that Hannah is a blessing and that I am blessed.  How Godly of them.  I had not realized!  I know that God will applaud you for being the messenger from the heavens!

The letter went back to original size and shade and was completed saying I knew that hers/his words were true even though it was not signed and reiterated (in case I had not received the point) what a disservice I am to Hannah being sch a by being such a ranter of my hardships.

Here’s the thing …. I am not sure if people like the writer realize this but reading this blog is not required in life.  You, hateful writer, have the option to unfollow me if you are my ‘friend’ on facebook or simply just not click on this blog.  The sky will not fall on you nor will your walls come crashing in.

This is how it all started:  It started with me starting to write the events of Hannah’s life from birth to age ten or so.  Why?  Because her life was a story and I started the whining writing because it was a way to keep track of all she and us as loving, non-whiny, blessed parents have been through.  I thought I would photo copy a few copies but when I started to mention to people that I was doing this I began to hear things like “Save me a copy”.  This surprised and encouraged me and I sought out ways to have the book published.  What an exciting time that was!  Writing in general has become extremely therapeutic for me – so thank you those who have not sent me hate mail (which is 99.999999% of you).  After the book was completed people have asked in general for book #2.  Happily I could say that it has not happened because thankfully Hannah’s life is not eventful enough for another book, but a blog is in place for those who are interested.  For those who are interested.

I write the blog for many reasons and it has evolved and been a huge source of support for me and others.  I primarily write it because when we were in the early trenches I felt very isolated (even though I owned a vehicle and had a loving family) and if I could take this feeling away for anyone for any amount of time it is worth it.  If I can encourage someone to be supportive for direct support workers to get a better wage or continued improvement for those living with a disability then I am happy.  If someone thinks twice about using the “r” word because they know it hurts then can I get a “Hallelujah”?  If someone decides to hire a person with a disability because they are slightly more educated because of the blog then my time is well spent.  You get the gist.

The feedback I get from the book and blog is that it is educational, inspiring, strengthening, supportive and people have enjoyed reading it.  I have had phone calls from people I do not know, people who are acquaintances, people who have completely different struggles in life with lengthy conversations about life and God.  Sadly, no one has said that I’m funny …. well maybe one person a couple of years back.

If anyone out there wants to hear fluffy fairy talk about how bright and sunshiny life being a caretaker is then please stop reading and hoping.  It is not going to happen.  Perhaps subscribe to the nearest cat video station.  The true goodness and beauty of special needs life is deeply woven in my life lessons and comes with ugly blood, sweat and tears.  It is intrinsically who I am and simple words with a simple blog post do not suffice.  The blog and my words will always be truth and transparency.  I will never be the same person because of Hannah and the special needs community.  I am a better person because of it all – and that (obviously) is not an easy road nor a road that I can simply look to Jane Smith to see what they might be doing.  I have sought out my supports and holy cow are they supports.

So dear “hate letter writer” now you know a few things with most importantly how not to read something that infuriates you.  I will say you did teach me one thing … how hate looks and I will strive to do 1,000,000 times in love than what was shown to me.  How about today we do one thing in love – double points if it grows acceptance for those with a disability?!  And yes I’d love to hear about it!  Even if it is a change in a thought pattern.

And … as Hannah loves when I sing these two words to her … The. End!!

 

“Living with Rain Girl (and other under the weather stories) available on Amazon

 

 

Happy Special Needs Mother’s Day

Mother’s day is tomorrow.  This can be a difficult time for many for a variety of reasons.  For us mom’s in the special needs world I feel we kinda need and deserve our own day but I do not think that is about to happen so here are some thoughts and affirmations I have for us on this day.

For the Special needs mom.  For YOU who:

  • Quietly and painfully suspected early on that something was “wrong” with your child.  To say the words at first were so hard.
  • Were your child’s first friend and the second friend was some sort of therapist.  And the third friend was probably a “buddy” chosen at preschool.
  • Would have chosen to play nice and not create waves ever, but stepped up when needed. Again and again.  Now “Advocacy” is your middle name.
  • Day after day made porridge and chicken fingers because that is all your child would eat.  But then worked with a plan on how improve your child’s diet.
  • Tried and succeeded to have your child involved as much typical extra curricular activities as possible.  Working with whoever was needed, roping in help, making modification after modification, thanking those responsible for allowing the modifications then basking in the glow of recital day when your child performs the modified steps.
  • Silently grieved missed milestones.  Entrance to school, babysitting age, teenage years where friends and independence are key, driver’s license, graduation and so on.  The reminder of the loss is sharp during these times.
  • Look for ways for your child to be included.  Asking, suggesting, hoping, teaching and sometimes the reality is you are your child’s “all”.
  • Grimaced and quietly felt shame when you heard the word “retard” flung around as an insult.  You know your child has medically been called this.
  • Appointments, doctors and professionals are part of your normal.  This was not the plan.  You wish better for your child.  You wish to take this away.
  • Every time you see a news story when a special needs person is included in a slightly unusual way everyone feels “inspired” and “good”.  You get tired of kid’s like your’s being inspiration porn.   This should be normal.  Not news.  Why can’t our kids just throw the effing basketball?
  • Are getting older and don’t have a plan for their child.  What will become of him?  Who will care for her?  Are they going to be safe?  Will they have a good life?

And then I realize without this special needs in my life I would never know:

  • About different diseases, defects and disorders.  I am educated in ways I never dreamed!  And most importantly I am not afraid of them.
  • The love, fun and the deep lessons learnt from befriending those living with disabilities.  I am the lucky one!
  • The pride one feels when advocating for basic human rights for a special needs person around the table, getting your point across and coming up with a plan and working together.  Exhausting?  Yes.  Worthy?  Double yes!
  • The pride of seeing my special needs child eat food like cauliflower crust, vegan margherita pizza with a word or look of disgust, but rather excited!  It’s pizza!  And why?  Because I did the work!
  • Watching your child perform when knowing it is 100x more difficult than the typical learning kids.  Knowing the lights, sounds and other sensations could cause a major incident – but it doesn’t.  And the pride you feel?  There are no words.  Inclusion for the win and to the max.
  • If any milestone IS hit we appreciate it more because heck, we just don’t get many of those!
  • How lovely a normal and boring day is.  A day without sickness, incidences at school or day program and behaviour plans that work.  Coasting is lovely.
  • Hey – there ARE days when your kiddo is inspirational!  When everything is difficult seeing success in the smallest thing is the best people!  The best!
  • That is feels good to be “in the know” that the word “retard” is not okay to say ever and proud that it is now called “the ‘r’ word” and that your generation helped get it there.
  • How many great people there are out there.  Administrators, teachers, and paras.  Most want to do the best for your child.  The one or two that have power struggle issues do not over-shadow the good-ness out there.  People who work in day programs and residential settings that are grossly underpaid.  But they do the job because they love it and love those with disabilities.  And you learn that you can trust.  That someone else besides the great and mighty you can care for your child.  (I write this last sentence but don’t fully believe it yet.  So I am a being a bit of a big talker Betty Crocker).
  • The AMAZING fellow special needs mama’s.  Sassy, strong to the core, real and good.

To you my special needs mothers – I dare say we did not wish or hope for this.  But we would not change our children (but maybe take away some of the hardships) and we have all become better people because of our kids.  Happy special needs mother’s day to you.

P.S.  Hannah came home from work on Friday.  She had her snack and clean up like usual.  She went to the washroom and headed out to her duplo blocks.  Suddenly it started.  The tears and the anger.  Being functionally non-verbal she could not tell me.  Soon she settled only to have the anger start up again as we went out for dinner.  A former staff from her program was a server in the restaurant and assisted us in trying to make her happy.  Hannah’s face was red and she was punching herself and saying all the angry words she knew.  The server brought her ice cream, “her treat”.  Nothing would make it better and it continued for a couple of hours.  It was frustrating, extremely difficult and sad to experience this.  To not be able to help a child no matter what age is torturous.  Why are you sad?  Why are you mad?  What is wrong?  How can we help?  What can we do?  Why?  In desperation I gave her some pain medication to see if pain was the culprit.  Within half an hour we had our Hannah back.  Who knows?  Maybe it was pain or maybe she has associated the pain med with feeling happier.  At night I went to say “good night” to her.  She did not talk to me but rather asked out loud in an echolalic fashion, “Why is she crying?” with some added arm gestures.  She wanted to tell me but lacks the ability to use language in this way.  Special needs Moms I know this story will resonate with you.  How many times have you wondered how to help your child in big and small ways?  How many times have you felt utterly defeated in something seemingly minuscule? How many times have you said to yourself, “I can’t do this”?  But we do.  Here’s hoping for a peaceful day for you all.

Autism awareness day 2019 – a day in the life

A mash-up of events to create a typical day.  Some honest feelings here so read with no inspirational special needs mom in mind 🙂

Her alarm clock rings.  She shuffles out of her room with a head full of messed up hair, looking like a stunned banana that morning has arrived.  Once she snaps out of the shock of morning she is delightful.  I giggle at her and say “Morning’s are ridiculous”.  She echos back at me, “Mornings are re-dic-a-lus.  Re-dic-a-lus.  Re-dic-a-lus”.  We start the same routine that we have literally done for years starting off at her closet.  I show her a shirt which I think is cute and Hannah gives me a queen-ly head shake.  It’s a no.  I show her a few more with the same queen-ly head shake when finally I come upon a shirt that makes Hannah say (inhale) “That one is fine”.

But the delight of wardrobe selection soon wears off as I pick up three different (we’ll just say) items of unsanitary-ness in three different places this morning.  Finding them around the house like some sort of bizarre diametric Easter egg hunt.  Washing my hands with soap each time.  Frustrated that this is a thing.  Still irritated at the situation, not at Hannah, I go to self pity.  Always ugly and never helpful.  We move on and use the waterpik on her teeth.  Hannah tolerating it as best she can but I know it is so hard.  Hannah’s mouth slightly opens and a little bit of water squirts on her face.  I immediately apologize to her and brace myself knowing the shitstorm that is to follow.  While it is only a bit of water this will have felt like a tsunami on her face.  Hannah responds as I thought.  Needing a bigger apology from me Hannah over reacts and dramatically  says  what she wants to hear from me, “AUGGGHHHH!!  I’m so sorry, I’m so sorry, I’m so sorry” with her words and her body.

In that one second I think about all my sacrifices I have made for her and all I have done for her in addition to the diametric Easter egg hunt and it comes to a head.  Frustrated that her response is so strong to a few drops of water I instinctively and sharply say, “Hannah I apologized so just shut. up“.  Shit.  I regret my words immensely and immediately.  I didn’t mean it and telling Hannah to “shut up” will do nothing helpful.  Hannah tears up.  Feeling awful I apologize again.  This time Hannah is able to snap out of the waterpik “tsunami”, the rude words from Mom and the words of apology that typically set her off on an echolalic whirlwind.  She moves onto “Shrek” on Netflix while we wait for her day program van to get her.

She laughs heartily at Shrek and Donkey.  I’m glad she’s over our morning encounter and I sit in my guilt and try to forgive myself.

Having just moved into a newly built home our current landscaping consists of mud and more mud.  Flat boards and skids were recently laid down to create a safe haven from the mud from the driveway to the front door but that does not make sense to Hannah.  She had been walking the flat board path all winter without the skids.  Now there was something essentially blocking her trek to the day program van.  The skids – a new addition to the sidewalk.  Without thinking that waking on a skids would be an issue I was stunned that she carefully walked around the skids and into the mud.  At the beginning of the day and at the end.  Today I was ready.  I would verbally coach and encourage her from the door.

She walks the flat boards well.  But then she approaches …. the skids.  Carefully trying to walk around the skids I open the door and (according to me) kindly and encouragingly coach her to walk ON the skids.  Hannah is immediately frustrated and confused not knowing where to go.  Finally she angrily stomps on the skids casting daggers in her eyes as she whips her head around, directly at me.  Voom voom voom.  If she were a superhero I’d be dead meat.  The price I paid  for “teaching” skid walking.  I can hear her muttering angry words as she enters the van as I shout “Good job” with thumbs up. I risk the anger knowing that if I teach her she will then know it for the rest of her life.  (You will be happy to know the next day she walked the the flat boards well again, stopped, looked back at me and continued to walk the skids without anger or eye daggers.  Another win here!)

And she is off to her day program.

4:10 pm arrives and the door opens.  Hannah comes in and unloads her stuff from the day.  I greet her, “Hello Hannah!  How was your day?”   Hannah says to me, “We’re going to see John today”.  She knows that tonight she is going to the care home to visit her friend John.

Hannah eats her regular after work snack – iced tea and chips.  Chips that she has chosen from the grocery store.  While most everything in life has been taught very systematically and carefully choosing chips is something she just magically got!  Again showing that when someone is properly motivated they can do hard things.

Hannah consumes her snack, uses the washroom then very excitedly heads to the cupboard where her duplo blocks are stored.  Having moved into the new home we had to change her duplo storage from one large bin to two smaller bins.  This irritates Hannah daily and the second one bin is empty enough she pours the remaining duplo into it, resembling all duplo in one bin.  If this makes her happy then I have nothing to say about it.  But it always intrigues me how she needs things just so.  She builds the same things she has for 20 years.  A “house”.  The baseplate filled in and built up.  Up onto a height that is determined by only Hannah.  The blocks get taken down and Hannah starts again.  Click, click, click.  Every day.  For 20 years.

We eat supper and because it is not deep fried Hannah is extremely slow.  Eventually she finishes going a little faster because her evening plans are so exciting to her.  Going to the care home to see John!

We arrive at the care home and find our friend.  Everyone in the ward is happy to see her and somehow Hannah is always included in evening snack.  John teases her and Hannah smiles as big as ever and hugs herself.  When it is time to leave Hannah does not want to leave and says “We’ll see John again soon.  We’ll see John again soon”.  John thanks us for coming but it feels like we are the winners here – seeing our daughter accepted here, despite the repeated explanation, “Yes she is 22 and yes she is small” – it’s okay.  We understand.

Once we arrive at home John becomes old news and the new news is that I will be giving Hannah and nice, warm shower.  Over and over we hear it … “nice, warm shower”.  I say in jest to her, “Hannah!  You’re driving me crazy-er!”  Hannah wanting me to say “crazy” rather than “crazier” echos the last sound of “crazy” saying “yyyy”.  This becomes our joke and we do it over and over.

She gets out of the shower by herself thanks to the Dollarama timer and independently gets her p.j.’s on.  I love this bit of independence.  A little bit of television time and it’s off to bed.  She goes to her room filled with Ross Lynch and Zac Effron paraphernalia.  We put on her “High school Musical” CD.  We tell her we love her and she allows a quick kiss on her head but usually not a hug.  We turn her light off and she talks herself to sleep.

Her day is not unlike typical learning people’s days.  Filled with laughter, arguments, relationships, food, celebrity crushes and a social life.  We want for her what everyone wants for their children to be happy, safe and have fulfillment in her days.  I would say we’re nailing it!