Parade

This past weekend we enjoyed our local small town festival.  The sunflower festival had our town overflowing with visitors, food, music, entertainment, sunshine and knackzot for the weekend.   Normally the streets of Altona are pretty much traffic-ridden free however on weekends like this we all search for parking,  watch for cars as we walk and practice our patience as what normally takes “five minutes” to drive  somewhere takes more like seven minutes.  Small town problems.

Growing up in Altona we, as most parents, were excited to have our children enjoy the festivities as we did when we were young.  A big part of the festival is the Saturday morning parade.  Emily, our eldest typical learning daughter, like most children enjoyed the parade while catching and eating the candy and other treats being tossed into the crowds.

When Hannah was born with all her health and development difficulties we tried with all our might to immerse her in typical life.  Exposing her to as much as we could while adopting the philosophy “know her limits and push her just above”.  While her autism was only diagnosed late at age six we knew there were significant development irregularities that were not understandable to us however we chose to assume that she could do anything we put our minds to.

While regular everyday activities like responding to her name, walking in public, playing in a way that was not weird, and talking were alien to her we never assumed we were in for big problems as we approached the Saturday morning sunflower festival parade.  We happily and naively brought Hannah to the parades expecting her (I kept forgetting that nothing was easy for this girl) to enjoy the parade.  After all, kids. like. parades.  Not so.  Hannah would immediately show signs of being terrorized, with her face becoming red, her whole body sweating.  She would clamor out of her stroller and while she could not appropriately converse with us knew the phrase to save herself.  “Time to go home time to go home time to go home”.  Crying, freaking out, and definitely not loving the parade we were perplexed at this unusual reaction.  Eventually we gave in, knowing that the limits were pushed high enough.  Letting her sit in the vehicle she would be safe from the noises and the sensory overload.  It hurt to not only not have my daughter enjoy an outing with us but to see her so terribly afraid.  People trying to be helpful would say unhelpful things to us like “I don’t really like parades either”.  Fun fact …. don’t.  Experiencing this odd reaction and knowing that it was not understandable to anyone  made me feel even more isolated.

But every year we tried.  Every year she was able to stay sitting with us and not in the vehicle a little longer.  Eventually as the years went on we were able to only verbally warn her when the firetrucks, ambulance and other loud vehicles were coming and merely suggest she “cover her ears”.  Eventually we took her to the parade without a single thought on her reaction.  I beamed with pride as I saw her sit and watch a parade.

This summer Hannah’s head coach of the Special Olympics informed us that there was to be a Special O float and that all athletes were invited to be on the float.  Immediately I said “Hannah will be there!”  When I told Hannah about this opportunity she shook her head and said “I’m not gonna do it”.  Inside I laughed asking myself “Has she even met me?”

Hannah stuck with her opinion of “not going to do it” until the night before when I told her who would all be on the float – one of them being a long lasting crush.  Suddenly the parade sounded good and she was excited!  Thank goodness for Eli.

Being old and tired when I brought her to the float the years of parade hell were lost on me as I felt I was just dropping her off.  The fact that we had worked really, really hard on this fell to the ground and it felt like I was just doing a task.

We watched the parade this year without Hannah.  Not because she was in the vehicle terrorized but because she was participating in the parade.  When the Special O float came by we cheered and waved!  Hannah covered her face with her hair as her Special O friends on either side of her encouraged her to look and wave at us.  It was a beautiful few fleeting moments.

Once again I am reminded to continue pushing Hannah just as we all need to be pushed in different avenues of our life.  Sometimes in the special needs world there can be a ‘reverse discrimination’ meaning that because somebody has a disability that we don’t ask anything of them.  We are so glad that while it was difficult, that we persevered for her and that we helped her achieve this win!

 

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Why can’t the world be like Special Olympics?

(First run then chips)

It was about a year and a half ago and our local chapter of Special O was getting ready to shut down its regular activities.  For us it meant that there was one less event for Hannah to attend during her week.  While athletics is not her “strong suit” (aka not athletic at all) she thoroughly enjoyed Special O and somehow was oblivious to the noises and other sensory issues that normally would intimidate her.

As the track team would carry on meeting Monday nights I was encouraged by the coaches that Hannah should give track and field a try.  It seemed … I cannot even say a “pie in the sky” dream.  More like a “bakery in the sky” dream.  But because I am always quite desperate to have appropriate events for Hannah … I mean ….because we saw athletic potential in her we decided to carry on with training for the track team.

And when I say “start training” I mean really to start training.  Hannah did not know how to run.  Hannah could not even walk at a brisk pace for the most part.  Her run consisted of a one step forward, followed by a hop on the foot, then a step back and a jump up and down.  Depending on what was happening there may or may not be some hair caressing and finger flicking.  There.  That was her run.

But we practiced.  Anyone who worked with her helped her practice walking and running at the track  Starting off very slowly and starting off with the early years ABA of a 16 piece jelly bean.  (long story).  Bit by bit she  made gains at that particular track we practiced on.

When the date of the track meet came (last year) we were so anxious.  She would be publicly placed at the U of M track for all to see.  She would be asked to run from a gun shot (the least likely tool that would encourage Hannah to run).  What would happen?  Would this be a Hallmark afterschool movie where Hannah would miracously learn to run and win the race?

Let’s just go with “no”.  The gun shot and the other two runners took off.  Hannah stood there playing with her hair.  As the crowd cheered and cheered she eventually started to run, crossed all lanes, stopped plenty of times, walked to the official (who was saying “over here Hannah” which she took literally) and argued with everyone as we pointed to the finish line.  Lots of room for improvement.  But we were so proud!

So track and field practice this year – we. were. ready!!  She had “done it” once before and we had our diving board to jump off of.  But something was different.  Hannah wanted. to. run.  We went to the track and we saw a willingness and an excitement that we never expected.  When I lie-ingly told her the people who were cheering for the baseball game where cheering for her she beamed and flipped her hair!  Together we thanked the crowd (thank you baseball crowd).  Her workers took her running and poured on the charm.  “Hannah I love how your hair flows in the wind when you run” and so forth was the new 16 piece jelly bean.  It really takes a village.

She trained and did so well we decided to enroll her in an additional race – the 50 m and the 100 m.

The day of the track meet came.  We were less hands on in terms of her care than last year.  Only verbally sending her on the bus (while we followed behind in our car).  Allowing the coaches to take her here and there.  We were spectators. This only really hit me later when I stopped watching her shot put and chose to watch our team members in a race.  How independent she had become over a year.  Others where able to take care of things.

When the time for her race came we sat in the bleachers and again verbally told Hannah to go with her coaches.  We beamed with pride and a little anxiousness as we saw our petite daughter walk on the field with the racers.

The gun shot and Hannah went.  There was no hop, skip, jump and caress hair “run”.  She ran.  Slowly.  But she ran from beginning to end!  She ran so well (for her) that she could have passed a runner once or twice.  But we never thought of that!  (Goals for next year).  She ran from beginning to end, stayed (mostly) in her lane and did not argue with anyone during the race!

The atmosphere at Special O is heavenly.  There is no judgment and a consistent flavour of cheering for all and accepting  without exception.  Whether you run 800 m and lap your competitors or whether you cross all lanes and play with your hair…. everyone is a winner.

We left the track meet and slowly morphed into “regular world”.  Where Hannah and those like her need to fit in.  It always saddens me when we leave our safe world.  Hannah piped up in the back seat of the car.  “Thank you for the running”.  Thank you for the running?  From teaching her one and a half years ago to this.  So many gains and renewed energy on if she did THIS what else could she accomplish?  Thank you Special O.

 

 

With autism one does not simply just go to a 2Cellos concert

The rock bottom of undiagnosed autism was this memory.  We were trying to visit at a loved ones home.  Nothing happened but Hannah was under the table, crying, shrieking, sweating, trembling, panicking and desperately pleading to us.  Even though she could not really speak she could somehow miraculously say to us “Time to go home time to go home time to go home”.  Our world was getting smaller and smaller with her.  We understood that components in this world had been making her fearful and panicky and we tried to sensitively push her through what we felt was reasonable – but visiting loved ones?  What is happening?  Our already small world with her was getting smaller and smaller.

When she finally received her diagnosis of autism the flurry of research began.  Computers or the internet where not popular as they are now.  So we relied on books, someone recording a television show that featured autism, magazine articles or again someone that clipped an article for us and word of mouth.  But we still got shit done.  It just took longer and had a different route.  In my research I read really non-uplifting news.  Low expectations and inability to prosper in most components of life.  “Over my dead body” I always said.

And so we pushed her.  We knew her limits and we pushed her juuuuuusssstt a tiny bit ABOVE those limits.  No matter what it was.  We pushed her and ignored the ‘let’s feel sorry for Hannah’ looks that sometimes accompanied (either really existed or in my mind).  If people with hats scared her we ensured that she greet someone even if he or she was wearing a hat.  If a dog’s bark scared her (and we somehow knew she loved dogs) we got her to pet a friendly dog.  Even if it was for a second.  If grocery shopping sent her flailing to the ground we continually worked at grocery shopping.  Everything in her ABA daily program needed follow through and we did it.  We all worked and it was exhausting.

It took time.  Some things took years.   When Hannah first entered middle school she had many new experiences including new building, new EA’s and a new environment.  It was September of her fourth grade year.  Hannah and her new EA’s walked down the hallways into the gym.  Hannah sat with her class and watched the drumming group start to set up.  Somehow Hannah knew what a drumming group was and immediately had a panic-stricken reaction.  She was taken out of the gym before the group even finished setting up and before the group even began to play.  Essentially she never heard the group play a beat on the drum.

But the fact that she never heard the group did not stop the YEARS it took to get over.  For the next three years the EA’s worked with Hannah to  only walk appropriately to the gym.  Hannah linked the gym and the perceived loud noise and was unable to move towards the gym without falling down, trying to run away or freaking out.  By the time she was in grade six she could without a lot of help move peacefully toward the gym and enter the gym without panic.

Then there was the time we attempted to take her to a professional baseball game.  She had overcome so much that we thought we would try it.  It was a massive fail.  Hannah could only walk part ways in the building and flopped to the ground.  Here she panicked and refused to even move an inch towards the seating.  The game had not even begun and she perceived and knew that there would be noise and cheering.  There we sat with her, on the corner on the floor while she sweated, panicked and shrieked.  I don’t even remember how we did it … I believe we took turns sitting with her so our other daughter could see the game.  I believe we left early.

I know we did not intentionally seek out loud games and concerts but I do know that we pushed it a little bit.  And bit by bit it worked.  Suddenly after years of doing this we were taking her to sports events and concerts without any concern.  And eventually this turned into Hannah  loving the events and asking to go again.

It was about a month before Christmas and a friend of ours showed us a video of the 2Cellos on youtube.  Hannah saw this and fell completely in love.  The 2Cellos are a classically trained pair from Croatia that play a variety of music including classical and progressive rock.  The videos range from soft and soothing to raunchy with the cellists falling on the floor with their cello bows frayed.  They are accompanied by a string ensemble, keyboards and drum.  She has always loved classical music and while I play the violin she is always enamored with the cello that plays in my music group.  After the visit that night Hannah kept repeating to us “the 2Cellos” so we found videos for her to watch at home and of course she got a CD for Christmas.  Gone were any other groups that she adored like ABBA, Austin and Ally and R5.  She only had ears for the 2Cellos.

When we found out that they were coming to Winnipeg in April we booked tickets for her and gave them to her for her birthday (in February).  Hannah non-stop talked about “going to Winnipeg” and “Seeing the 2Cellos” and when the day finally arrived she was excited as ever.  We had row 7 seats – close and centre to the front.  The loud noise, the drums and extreme light show not only did not send Hannah sailing to the floor in trauma mode but rather she rocked back and forth and hugged herself in delight.  She even managed to clap her hands unprompted a few times.  I noticed a few people around us look at her and smile and felt grateful that we live in a place where her atypical-ness is not frowned upon.  But while she was smiled at nobody knew the blood, sweat and tears it took to get her there.  We were just audience members.

On the ride home Hannah repeated “That was so much fun.  That was so good.  We’ll go see 2Cellos again soon.”  I soaked in all her happiness and it only dawned on me the next day that we actually worked really hard – like really really hard to get her to this place.

The next day as I drove her to work Hannah was still on her 2Cellos high.  “That was so much fun.  You’ll take me again soon” she said.  “Yes Queen Sheba.  I’ll get right on that.”  My sassiness was lost on her.  And it felt good to share a really really experience with her and to reap the rewards of the hard work that got her to that point.  Next task to conquer?  Motorcycle rides!  #idon’tthinkso

Yet another day in the life – #lightitupblue

Want to be aware of autism?  People with autism have highs and lows, favourites, laughs, cries, hopes and dreams like you and me.  Read on to the mashup of a day in autism life.

Her alarm goes off at 8:25 am.  I call out to her to get up.  She used to do this independently with lots of teaching but has now regressed to usually needing prompts.  I used to be sad about the regression however now it is ‘whatever’ works.  She shuffles out of bed to the bathroom her hair a hot mess, eyes glaring at the day clearly unimpressed.  “Mornings are ridiculous aren’t they?” I say to her.  She echos “Mornings are ridiculous.  Mornings are ridiculous”.  I chuckle knowing that within a few moments my fellow morning girl will perk right up and she will happily begin the day.

We start the scheduled way of getting Hannah ready for her day program.  She enjoys making her bed with her toss pillows just so, opening the blinds and curtains and giving me the “that sounds good” or “maybe something else” to wardrobe selection.

Hannah walks down the stairs her low rise jeans showing her underwear.  “Nice pink gitch” I say to her.  Hannah echos back – repeating the last sound “itch itch itch” and it kind of sounds like she’s calling me something else that rhymes with ‘itch’.  I’m sure it is a coincidence …

She starts it.  “It’s Hayley’s birthday.  I have a present for you.  It’s Hayley’s birthday.  Here Hayley I have a present for you” – self hug.  This has been going on for a couple of days already.  The same thought, the same phrase over and over again.  While I am happy she is happy to give a present to her friend my mind is exhausted – like a worn out body – in hearing this.  I tell her again – yes Hannah – I know.

Getting ready for the day takes thirty minutes exactly.  Everything is the same each day.  Partly because that is what works and partly because she does not veer from that.  She has no other agenda other than what is given.  She is truly a vulnerable person.  And that is not lost on me and it is treated with respect.

We drive to her day program.  We listen to the radio and I suspect she is grooving to the music by her rocking …. it’s a different rock back and forth.  She has her sunglasses on.  It took years to get her to wear sunglasses.  I am proud that she can wear sunglasses without a fit. Even though she puts them on OVER her hair – I’ve chosen to let it go.

I tell her about her day after day program.  It’s important to me that she has a fulfilled life with something fun and exciting each day.  I leave out the part where she has a doctor appointment later on.  Although the appointment is only a verbal visit her years of medial difficulties have caused a scar in her soul.  Telling her about the appointment would only make her anxious throughout the day (although less than usual).  So I mindfully leave it out.  I’ll deal with it later.  But as we talk  I remember that last night she was delighted in a phrase from the movie “Madagascar”.  I remind her and we laugh as we say “69 months?  No 6 to 9 months”.  This is gold to Hannah.  Pure gold.  As I laugh about this I realize I am getting weirder and weirder.

I drop her off at the day program and again ooze with pride as I see her gather her backpack and organize all components before leaving the car.  I never forget how hard we worked on everything she can do.  “Goodbye Hannah.  I love you” I say hoping for a reciprocal response.  “6 to 9 months” Hannah says.  I try again, “Bye Hannah I love you”.  “right” is her response.  I try one more time.  “Hannah I love you”.  “lu yu” she quietly says and hugs herself.  I believe she loves us and knows what love is.  I believe telling us is so overwhelming that it is nearly impossible.  We know that what she loves the most can shut her down the most.  And so I continue to ooze with pride as she walks independently to the building and enters.  They’ve just installed a button that will automatically open the doors.  I verbally coach her from the car.  She looks even more regal as she enters the building.  I wonder what she says to the staff there.  Maybe she says “69 months” …

I leave her there trusting 100% in the organization that cares for her.   I trust them with her vulnerability and that her well-being is in the best of hands.  I am grateful.

During the day as I run my errands, part time self-employed job and volunteerism I am constantly mindful of Hannah’s day, what errands can she do at home and organize the pre-steps to the errands and other work that involves her.  One must have close to a PhD. in advocacy, paperwork and investigation to fully raise a child and now adult with a disability.  Every time the phone rings I am anxious that it is the day program staff calling with a concern regarding her.  It’s not that there are a lot of problems just mindful that she is still in my care even though she is not physically in my care.

The work day for her ends quickly and I go back to retrieve her and bring her to the doctor appointment.  We are only there to meet her new doctor so that if there is a medical issue he has has the already met her and been  made aware of some of her issues.

We used to have to carry her down the corridor of all medical clinics.  We used to have to hold her down and fight with her for the simplest thing.  Even talking in the office was difficult.  Not so now.  I told her to follow the receptionist and she did.  Pretty adorable if you ask me!

As we say our greetings to the doctor, Hannah calls him “Dr. Phil”.  Coincidentally her Disability tax credit papers lie on his desk.  We had already applied for this and it was made very clear in the original papers that she is 24/7 care for all components of her day.  And yet they “need more information” and so he begins asking the questions that are on the questionnaire.

Feeling like power special needs autism mom I begin answering the questions like a boss.  But we start from the beginning of her life.  The horrid first few years, her heart issues, the surgeries, the side effects and added health issues, the autism diagnosis and all that we have done.  He takes her blood pressure and it is silent.  Immediately thoughts sweep over me.  The silent test as we wait for the answer.  So many times (beyond blood pressure) there was silence and then a dreaded answer.  I reel it in.  This is only a blood pressure test – all is well – she is safe.

The doctor continues with the questions.  Every question so “not applicable” it is indescribable.  “Does it take 3x longer for her to take her medication?”  How do you answer that when the concept of ‘taking medication’ ISN’T EVEN ON THE TABLE?  And so it went on.  I explained time after time all the things she could not do and did even have concept of doing.  And Hannah sat there as I told him how incapable she was.  (In hindsight I should have got her to wait outside the office).  Then it happened … it was one too many “no it does not take her 3x longer, she cannot do that and she has no concept of that” the sinking heart sunk.  The tears started to flow.

Assessments are the worst.  We have not had to do an assessment for a number of years.  You never get used to highlighting all the negative things about your child to get supports.

Again I reel it in.  If I cry Hannah and her uber sensitive empathy will get upset and obsess.  And it’s becomes clear to me that I am not as strong as I think I am.  There are unresolved pains that have not healed.  great.

We finish the questionnaire and hope it is finally  made clear of the 24/7 care she requires.  Perhaps if they signed up to work a day with her they’d understand.  Would’ve saved her $60.00 in filling out forms fees.

The deep sadness sticks with me and Hannah again is oblivious.  When we get home she goes directly to her duplo blocks to build and de-stress from her day.

The evening is exciting for her as she is joining Dreamcatchers – a local volunteer group that assists those adults with developmental disabilities in leisure activities.  They will be going to a local high school to watch a production of “Footloose”.  I will be there as well but with a group of my own friends.  But there ‘just in case’.  This is the first time she’s joined them without a personal worker.

Hannah is excited to be with ‘no mom’ and to be with a group of peers.  She is glowing, blushing and hugging herself.  I am grateful in addition to the deep sadness triggered from earlier.  On the way home my girlfriends dote on her.  Lovingly teasing her, giggling with her and letting her shine.  So good to remember all the good people she has in her life and to forget all she is incapable of doing.

We get home and I’m exhausted ready for bed.  But Hannah is getting more mature.  “I’m not going to bed right now” she announces.  We let her stay up and have a snack.  She chooses peanuts.

When at last she agrees to go to bed we both tuck her in with her favourite ‘2 cellos” playlist playing.  She has a good life.  She has love, engagement, a job, fun and safety.  “Good night Hannah.  I love you” I say.  “Night” she says and laughs knowing she did not say “Love you” back to me – like a joke.  I let it go.  I know she loves me.  I just know.

 

 

 

A light story featuring Karma

I kind of believe in Karma.  Most of the time it is when I am being ‘not my best self’ or ‘who I really want to be’.  But to lessen the karma-ic blow I preface what I do/say by saying “Karma’s gonna get me” and sometimes that works.  Or at least it makes me feel better.  I am sure there are holes in this system.

So Hannah is what I have cleverly labeled ‘functionally non-verbal’ meaning she can talk however cannot reliably answer yes/no questions or any questions to any depth.  She cannot have a discussion on anything past a two sentence exchange.  And even then it is difficult.  The stress of this shuts her down and it takes someone persistent and who knows her to pull language out of her.  It’s difficult for her but we see that pushing her just a teeny bit makes her happy in the end.  I love it when I can get a few extra words out of her.

One Friday afternoon I received a phone call from her day program staff.  The call started out as “Hannah’s fine – don’t worry.  But she had a bit of a scare”.  It seemed like as she was sitting at the coveted shredding machine that the white board that was attached to the wall somehow fell and hit her on the head.  She was not hurt but rather more shaken up and more so really miffed that this happened to her.

Now a normal parent/person would feel immediate compassion and say “Aw that’s too bad” and I did.  When I talked to Hannah it was evident by her body language that she was a true victim and that she had lots to say (albeit it was the same few phrases over and over).  She would transform like a Hollywood actress, almost dramatically re-enacting the scene and repeat “OW!  It hurt my neck!” and add a few fake sobs.  Knowing she was fine I ‘darkingly’ loved to elicit a response from her and would talk to her about it.  Come on – I’m getting some language here!!  And really in our family there is no discrimination – you all get teased 🙂

So like a good special needs parent I introduced the subject to people she knew to help her have a bit of a conversation.

Introduce karma.

I volunteer in an EAL classroom.  In the classroom I often use small whiteboards to help the students I work with.  Getting ready to work I went to the top shelf where the high pile of whiteboards was to get my own personal white board.  Thinking I only took one board – I actually grabbed two.  The top board slid off the bottom board and … landed on my head!  I was fine – I just had a bit of a scare.  🙂

When I got home I told Hannah.  I don’t know how much she understood and actually she still fixated on the fact that SHE had a whiteboard fall on her.  But anyway we really take language where we can get it and Hannah is starting to laugh about it!  I’d say I’d take the karma payback for the teeny bit of language and the ability to have a small conversation!

 

The Palm Trees

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

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

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

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

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

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

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

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

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

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

Kindness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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