770

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!

The “touch”

I am enjoying being a part of a book club in our church.  We are studying the book “Inspire” by Rachel Held Evans.  I have been inspired to think about the stories of the bible beyond being only literal and what deeper meaning they may have for us.  The latest chapter we discussed Jesus touching those who were deemed untouchable due to social status or disease.  These people were not to be touched yet Jesus touched and healed.  What do these stories mean to me?

Like a one trick pony I immediately go to my role as a special needs caregiver.  While I am not fraught with disease or poor social status I am a mom to a daughter who generally does not touch as touches “hurt”.  Hannah typically cannot hold my hand, hug, kiss, let me give her a back rub or put my arm around her.  Daggers from her eyes and a quick shuffle away from us will quickly and predictably happen.  For years I backed away from many and most hugs from most others … building a wall around me.  “Hugs don’t mean love between Hannah and I therefore I don’t hug”.  The wall protected me from the pain the lack of love that hugs and other snuggles brought.  Good coping?  Probably not but it was the best I had.

There are times every once in awhile that she will allow physical contact.  During music is one.  She will from time to time lean against us or put her head on our shoulder.  Other times she will randomly touch my cheek.  These times are magnificent.  Oozing with special-ness.  (We’ll not talk about the time she touched me on the forehead only to have her finger slip into my eye and cause a painful cornea scratch.)

I resonated in my own way with the stories of Jesus touching the untouchable.  To have a loving touch from a child when touching typically is impossible is special.  As the author encouraged out of the box thinking I went on to think.  What else besides a loving and healing touch could these stories be about?  How about taking the time to listen to someone – really listen when they talk?  Eye contact.  A meal to a family during a difficult time.  An e-mail to someone who is in pain offering yourself without advice or judgement.  So many things we can do for those in need that are not extravagant in nature.  That’s what I took from her lesson.

(I ask that you read this paragraph with a softened heart and free of judgement.  As woman (in particular) this is such a difficult issue to broach).  As a 50 year old woman I have been going through a mid-life – not crisis but more like questions.  What have I accomplished in life?  I have never worked full time since I have had children as Hannah’s needs have been so great.  Could I have done things better?  Should I have tried harder to find reliable respite and gone further with a career?  Does it make sense to be primarily a care-giver and not contribute more to the working world?  Always doubting yet knowing I have done for Hannah what I have thought best.  But something nagging in me was saying that I needed a ‘gold star’ from someone.  Some assurance that my contributions to society have been valid.

We had the opportunity to host some people for dinner this week.  Some of the people invited to the table were woman who were successful in their career.  What would I say to them?  A caregiver – me?  Devoting my life to one person that needs me.   A tiny bit of anxiety crept in me but somehow I knew that this dinner was going to be fabulous.  As the group sat around the table sharing stories about their lives we shared a little bit about Hannah.  Now when we share about Hannah the conversation changes.  There really are not any stories of relevance that other’s can share – no “tossing the ball of conversation”  (unless I’m with my autism mom’s group) and people usually just take in the information we share about our life silently and end up looking like stunned bananas.

I spoke about Hannah and her life and most of all her accomplishments that we have worked with her to succeed. The ups and the downs and the ways we have coped.  Never knowing if I have said too much or caused people to be uncomfortable I stopped talking giving the dinner table group a break from our “gong show” life.

The woman beside me was silent and she looked at me with a kind and serious face.  “I commend you” she said.  She took the time to listen to our story and to learn a little bit about autism and special needs life.  She took the time to offer  kind, encouraging and most of all supportive words.  For some reason this sentence from this stranger was exactly what I needed.  A validation from “the other side”.

The debate goes on in the special needs world.  I wouldn’t change my child or take the disability away from him/her or I cannot stand to see my child suffer or whatever it may be.  Debating about things we have no control over.  While I do not like to see Hannah suffer throughout her disability and I would take that from her … I would have a very difficult time taking away the depth of lessons we have received from being special needs parents.  That taking the time to talk to someone who may seem “untouchable” without fear, noticing those who are not included, being kick ass social justice advocates beyond the special needs world (to name a few).

We are here to love.  And love must be an action word.

Stares

We went out of town for dinner last night. Hannah was fashionable with her hair brushed and curled. (Not that it matters just saying). I took her to the washroom and there were a number of people in the booth that stared.

This was not just a look a little too long glance. It was mouths open staring. First the guy then his partner. I sighed inside and waited for the stares to stop but then I saw someone from another booth starting to stare.

So I took out of my pocket my only defense for her. I STARE BACK AT THEM with my eyebrows raised. Usually that works. Not this time.

I walked more in front of her blocking her from their view thus ending their evening ‘entertainment’. Lots of angry words puddled in my mind.

Here’s the thing people. Stop staring. It’s rude and hurtful.