Special O, O, Oh my heart!

Less athletic and competitive in sports I could not be.  Hannah has gained this gene from me – her father doing well in whatever sport he chooses to pick up.  So when we opted in the local Special Olympics program in Altona a number of years back,  I was uncertain how this would go however seeing that extracurricular activities that are appropriate for her are few and far between, we gave it a go!

Now this is not a Disney movie where Hannah’s lack of sports ability is suddenly transformed in slow motion as she enters the Special O gates.  No – Hannah is Hannah and nothing has been magically transformed (because we simply believe dreams comes true).  But rather fun work with her worker/s and the rest of the AMAZING Special O coaches.  Working together as a team to have Hannah participate as much as she can – knowing her limits and pushing her ooooohhh just a tad above!  (As we do with everything).

It was spring of last year.  The regular Special O was complete.  The track and field team continued on practicing all their events.  We knew that Hannah and her (lack of) athletic abilities paired with inability to go with the flow (on her own) would not be a match for the track and field team.  So sadly she was done for the season.  I was speaking to one of her coaches during this time and she was wondering why we had not enrolled Hannah on the track team?  How sweet, I thought.  Hannah is invited to, like, everything in Special O.  But ya, nooooo, not a match.  The coach did not accept my reasons as to why we chose to not move Hannah on in this case and gently said “I think she can do it next year.”

If anyone knows me knows that if there is a glimmer of hope I am ON IT!

So the next spring practiced.  First of all we had to consider whether or not Hannah would be able to withstand the pressure of being centre stage, and all the noises that would accompany a track meet. Hannah is hypo sensitive, meaning she feels things too much – every step, every breathe, every thought, every word is accentuated.  Beyond belief for me.  So this explains her uber-slowness.  When she is excited she cannot run towards what excites her but rather she shuts down – hugging herself and cowering her head to her chest, maybe jumping up and down.  So running?  Yea … not in the cards for this hypo sensitive autism girl.  And running was the first thing we targeted.  Heading out the the high school track and getting her to accomplish twice around the track running and walking when necessary.  Paired with skittles (throw back to the beginning of ABA sans cutting into eight pieces) and a CAN DO attitude we ran and walked the track.  Did she love the practice?  No not all the time but somehow she knew it was for Special O and so she persevered.

Suddenly a monkey wrench appeared.  I re-read the details of the qualifying papers.  “Must be able to run the 50 meters in 30 seconds or less” I read.  Emphasis on “I read”.  Sadly I reported to the Special O head coach that hey it didn’t look like Hannah would be a fit after all.  30 seconds would not be suffice.  Not even in the remote realms of suffice-ness.  “Oh well – we gave it a go” I thought.  Glimmer of hope – vanished.  I was working on the well with my soul when the head coach clarified what the paper actually said … “Must be able to run the 50 meters in 30 seconds or MORE”.  After all, it was Special O – a place for those who do not run fast.  This fact alone?  Come on – how much more marvelous can you get?!

Mother’s day approached and with it was the qualifying track and field meet at the U of M Investor’s field.  Hannah rode the bus with the other Special Olympians from Altona and Byron and I rode in our own car behind them.  How wonderful it felt to have her in another vehicle without us.  We sat with the track team and family and friends in the stands for the day.  This was all new to all of us!  When it was Hannah’s turn turn Byron and I were allowed to go with her Special O coaches down to the marshaling area.  She with two other Special Olympians would run the 50 meter.  I was a bundle of nerves – physically I knew she could do it but behaviorally I had no idea how it would go!  She had no concept of a start line and a finish line – only what we tried to teach her during our practice!  And a gun shot?  Not a great way to tell my hypo sensitive girl to start running.

Hannah walked onto the field.  Emotions started.  SHE IS WALKING!  ONTO A FIELD!!  IN PUBLIC!!  The Special O coaches brought her to the start line.  The gun shot for the ‘go’ and the other two started running.  We cheered for Hannah “RUN RUN RUN!!”  Hannah started walking – crossing every lane line there was.  When the Special Olympian official said to her “keep going Hannah – right over here” Hannah took it literally and walked over to the official (who was one foot away from the finish line).  Then Hannah argued with us all as we encouraged her to run to the finish line where she stopped one inch before the line and argued some more.  Finally she crossed the line!  Really – more proud we could not all be!  Was there room for improvement?  Sure – But all the skills she showed that day were amazing!!

The official track and field meet was about a month away so our practice continued.  The morning of the track meet came upon us and we arrived back at the U of M track field.  When the 50 meters event approached I was gently let in on ‘how this would all go down’ starting with that I would stay in the stands and the Altona coaches would take her down to the marshaling area where the Special Olympic officials would take her to the start line.  The fact that Hannah would be asked to go with the flow with someone other than me or trained staff was already a huge win and I had no concerns about me staying and her walking with others.  Our Altona Panthers coaches have gained her trust and Hannah adores them all – so I knew she was in great hands!

As Hannah walked onto the field with the official and the other two runners I knew that our diligent work was going to pay off!  And as the gun shot ‘go’ Hannah started running!  Not fast but a great and steady speed for her!  She ran all the way to the finish line!  More proud I could not be!!

When it was time for the awards ceremony we were excited to see all of our athletes receive their medals from members of the Winnipeg Police.  When it was Hannah’s turn she, without skipping a beat, went up to the stage to receive her award.  It seemed like there was nothing she would not conquer this day!

All of these steps have been accomplished due to the diligent work Hannah’s team has done throughout her whole life.  From the beginning stages when we taught her to point her finger to teaching her how to run.  We are not an island.

The mood at any Special Olympic event is simply … heavenly.  I would encourage anyone to attend a Special Olympic event if possible, or volunteer – especially those of you who are … how can I say this … extremely invested in your child’s athletic career in an “unhealthy” or “angry” way.  There is cheering for everyone no matter if you are walking, crossing lines, arguing or running a 50 meter in over 30 seconds!  There is a sense of acceptance, fun and pure joy that is indescribable.  You will never forget it!

The Special Olympic creed is “Let me win, but if I cannot win, let me be brave in the attempt”.  Okay just typing this makes me tear up … But Hannah showed so much bravery throughout this whole process.  From learning to run to running when a gun shot says go.  Thank you Special Olympics – for creating a space where my child and other’s like her can shine!

 

 

 

WHY THE “R-WORD” IS NO LONGER IN MY VOCABULARY

We have all said it. Including myself. But when you know better – you do better. And I am doing better. The “r” word or for those who do not know which word I am referring to is “retarded”. Or other forms, “tard”, “brotard”. When I looked it up in the Urban dictionary my options were unfortunately endless and I felt sad.

When we were looking for a diagnosis for Hannah, our autism girl, we saw specialist after specialist. This was before the time that autism was being diagnosed at the rate it is now. We knew there were serious cognitive issues with her however we felt helpless, scared and tired in trying to make sense of it all. She was six years old before she received her autism diagnosis – so for all those years we tried to cope and tried to find effective help in amongst her medical conditions that kept her very ill.

At age six she had only been walking for four years and we still carried her. She did not respond to her name, she could not go out in public with us, she could not eat appropriate foods, she was not toilet trained and she did not have any social skills. And when I say “any” I mean any. She was in her own world battling obscure laughing fits for hours which caused her to be even more in her own world. She could not talk unless she used the sentence “time to go home – time to go home”. We knew she had a developmental delay however we had hope that we could help her reach her own potential. Where she was at? That was not reaching anything except barriers.

The child developmental specialist either missed the seminars on diagnosing autism – we do not know – but it was missed at age four. So we carried on for two more years until an appropriate diagnoses. That is 730 extra days we coped with the unknown autism … scared, frustrated beyond belief and isolated.

The child developmental specialist perhaps thought we were parents in denial – as she had her “sympathetic” look on. She really did not probe for answers from us. As Hannah failed all the testing in her office (she could not talk or respond to any questions) the doctor gave us the diagnosis.

“If the developmental age of a person is half or under of their chronological age that person is ‘mentally retarded‘. And I know that is difficult to hear”.

Yes it was difficult to hear. It ripped my heart into pieces. Not because I could not love a child with developmental disabilities but to hear that word. When the word is used it is used to tease, to laugh at and to call someone stupid. This is what my daughter was?

I was angry at the doctor. Angry at the message and angry that she failed us in diagnosing the autism (that came later with a different specialist). We went home and continued our search and I never told anyone about the “r” word diagnosis. It hurt to even say the word.
So now you know. So next time your friend acts silly in public or you forget your keys, or someone cuts in front of you, if you can, find another word to use. I suggest checking out Urban Dictionary.

Still not convinced? Spend some time at Special Olympics, hanging out with children and adults with developmental disabilities, or come hang out with us. You will see a spirit of people like you have never seen before. You will see my daughter working her butt off to accomplish things. All academics, all self-help, all social skills. Even walking from point A to point B is difficult – but she continues to work day in and day out with a fabulous, highly trained team helping us. Yes her development falls in the ‘mental retardation’ range and honestly every report I read, I quickly scan hoping the professional has not used the word (yes it is still used). Her developmental level is meaningless to us. As long as we see her continue to thrive and meet her own potential – we are happy.

Check out this short one minute video clip:

Camping, a dog fight and a serendipitous meeting

We were camping virgins.  After years of wistfully watching  our friends camp and continuously and sadly denying their invitations for us to join them – after all what would would we do with Hannah – we decided the time had come to try and join in the camping world.  The recipe for success laid before us – a camper with a door to Hannah’s bedroom to provide sanity and separation, friends that could assist us and answer all of our questions and a beautiful new camper.  Hannah and I named our new camper “Glampy” – you know … glamping?  Glamour camping?  Hannah loved to say “Here is my Glampy pillow”.  Except she said it really fast – more like “this.is.my.GLAMPY.pillow”.  Over and over.  She was extremely unimpressed when she accidentally banged her head on the top bunk as she sat near glampy pillow.  I mentioned to her that she would probably do that once.  She probably did it more.

So away we went on our first camping trip.  Paired with wonderful friends who ‘got’ Hannah and lovingly and continuously accepted her.  We were excited.  Flying off to a problem-free start?  Further from the truth that could not be … but eventually we did arrive at our camp site.  Icelandic State park.  Half an hour away – but in the U.S.  Close yet not.

We brought our Shepherd/retriever cross dog along – Molly.  We love Molly.  And Molly the velcro dog loves us.  One evening my friend and I were walking.  I had Molly on a chest harness and leash and Hannah was biking alongside us in her adult trike.  All was well when suddenly a larger dog came charging towards us.  The dog was wearing a collar and leash however did not have a handler.  The dog was laser focused on Molly and barking.  I knew a fight was about to ensue.

I immediately braced myself and held tightly onto Molly as I shouted for help!  I tried to continuously move Molly out of the way as the other dog charged at her with baring teeth and as Molly tried to fight back.  I worked completely on adrenaline and I am certain I saw Molly flying in the air like a kite as I moved her.  (I am uncertain I handled this correctly however this is what my instincts told me).  The dog fight seemed to last forever and no dog owner came into sight when suddenly a camping neighbour got in the middle of the fight, created a firm and strong stance and shouted at the other dog to ‘Stay back!”.  The dog obeyed for that moment when the owner came running down the road apologizing and looking flustered.  Maybe more flustered and less apologizing … I don’t think she knew what really happened.  Nor did she seem to get the severity.

Fortunately my friend had Hannah’s back and miraculously not I, nor any of the two dogs, were hurt.  Not even a scratch.  We were all just a little flustered and Hannah only quietly and mildly obsessed about “I was too scared of the dog”.  For the next couple of weeks.  It’s actually still happening.

The next morning as we were outside enjoying coffee and breakfast the manager of the campsite came to check on us and our dog.  He read the incident report and was working on a follow up.

I mentioned that we were all physically fine and that our autism daughter was only slightly emotionally scarred.  He thought for a moment then asked us where we were from.  As I answered, it prompted more questions from him – our last name, then my first name.  He teared up as he quietly said, “I’ve read your book”  (“Living with Rain Girl” is Hannah and our families story about Hannah’s first ten years of life – available on Amazon.  Or I have a bunch in my basement).  He went on to say that he himself has a daughter who was diagnosed with autism and he had been hoping that one day he could meet us (Icelandic State Park is an extremely popular destination for those living in Altona).

Our book came at a timely fashion for him and his family and it inspired them to look into the ABA program for their daughter.  Once you start talking ABA and autism between families you cannot stop.  ABA and autism talk removes all barriers and creates immediate friends and immediate connections.  All stories will be different yet vastly the same.  We were so happy to hear of the successes ABA and all the diligent work provided for his daughter.  We each had story after story about our experiences and our phenomenal girls.  Stories that only another autism parent could understand.  What a gift!

I will add a little shout out to Icelandic State Park in the addition of a family/handicap washroom.  Two large private washrooms to choose from where a parent of either gender can shower and care for their child of either gender.  (This is a real struggle).  I or Byron could shower Hannah in these washrooms so easily – without skipping a beat.  The washrooms were designed inspired by the manager’s daughter.

What can I say?  Would I choose autism life for Hannah and for our family?  I don’t know because it is such a difficult life and I hate seeing Hannah struggle autism-ly.  Nobody wants to see their children suffer and when your children are 24/7 in your care you see a lot of continuous struggle and discontentment.  Kind of in your face – like all the time.  But taking away autism from Hannah would change who she is and I could never do that.  Glad I don’t have to decide.  What I can say is that a blessing that autism has given me is the connection I have with fellow special needs families.  An unwritten rule that these folks ‘get it’ and no words or explanation is necessary.  Often long and intense conversations are the product once one has learned we are ‘the same’.  A beautiful Ohana.

So thanks be to that dumb dog (I’m joking I’m joking!) or rather negligent owner that brought us a moment of respite in our camping week.  Respite in the form of connection and the knowledge that once again we are not alone.

#Icelandic state park

Graduating it up – Hannah style

 

It was December.  Hannah was in grade two.  (pffft as if I actually remember the exact grade).  Hannah had been in intense ABA for two years only having been diagnosed late with autism at age six.  Lots of grunt work was still being done.  Everything was a challenge to say the least.  In school we were working on basic coping skills.  Coping with tough grade two things like standing in line, walking down the hall, not ripping papers off the wall or clearing desks in a fit.  Her EA was thick skinned, kind, intelligent and the hardest of workers.  She got the worst years – however she would say she got the best years.  It wasn’t a matter of if Hannah would fight or cause disruption but rather how much and how disruptive.  I felt alone.

The students in school were getting ready for their Christmas concert.  Hannah and her EA worked diligently on walking with the kids, filing in and sitting.  Hannah sat as the kids excitedly sang, recited, acted and jingled.  As the kids filed out Hannah flopped to the floor in an autism fit and her EA needed to lift her and behaviourly manage her back on her feet.  People stared.  The amount of work it took for Hannah to walk, file and sit was equivalent if not more than the work the typical learning kids had accomplished.

Seeing this reeked havoc on my well being.  How could I sit in my seat and watch her only sit and fall to the floor while only imagining what others were thinking of her?  While I know I am not a mind reader (my therapist has told me so) it was too much.  Unstoppable tears flowed as parents filed out and excitedly greeted their children.  I was not ashamed of Hannah – never – I just could not cope in the typical world.

So I decided.  No more.  No more concerts.  No more typical world meets our weird autism world.  I had enough to cope with to add on work-shopping all the feels.  And it worked.  It was one less thing I had to go to at Christmas time (woo-hoo!) and my emotions had to work just a little less.

So all through the rest of her school years I avoided worlds colliding.  I managed to scope out my own little personal bubble in the school system often not knowing school staff or events.  No colliding = peace.

As the years went on the subject of grad came up and we had decisions to make.  Would we want Hannah to graduate?  If so how would it look?  I had prepared myself that yes Hannah would graduate because after all she loves attention and we knew she would really enjoy being doted on during the grad process.  So we agreed Hannah would attend the ceremony.

I was on an emotional roller coaster the months preceding grad.  This would be the mother of all worlds colliding.  A small Christmas program vs. high school graduation.  Emotions like sadness that this would be so different than what is typical, grieving this altered milestone, angry at the thought she might be laughed at (because she was so ‘cute), afraid she would flop to the ground and not get up like she did in grade two, and then over-whelming pride for my marvelous daughter.

Her EA’s and resource teacher worked and came up with a plan so that grad would be a success.  When plan A did not work plan B and a little plan C came into place.

The afternoon of grad approached.  As Hannah walked onto her corner of the stage (without an EA) to receive her diploma then walked three more steps to have her tassel moved I oozed with pride and did not (really) tear up.  But her dad did … just saying.  She was glowing!  She did it – Hannah style!!  (Which is extremely stylish!)

Just some really big props to WC Miller Collegiate for so sensitively handling this.  We were all treated with kindness and dignity.  I am really grateful.

We had planned her own after grad party – ditching the traditional banquet and dance.  Hannah was not connected with this grad class and it would mean nothing to her.  So we made it Hannah style.  I started researching e-mails and contact information and got a hold of nearly ALL of her former ABA workers/respite workers, main EA’s at school and resource teachers.  Adding in our friends and family our guest list was around 70.  No problem I thought.  Not everyone will be able to make it or maybe even want to … I could not have been more wrong.  Nearly everyone responded ‘yes’ to which put me in major party plan mode.  A party made for our graduate!

Hannah looked beautiful in her dress and loved all the people there.  We managed to snag a picture of her ABA village.  (see above picture).  Byron and I had a chance to say a few words (which pleased Hannah greatly) and we could thank this team.  From sitting and flopping with assistance in grade two to walking on the stage in a huge auditorium without an EA.  This team is responsible for these event and everything in between.

If you have a child with autism please do not give up on them. Do the hard work.  Do not give up on them.  Do not let them fall through the cracks and continuously advocate for them.  Do I wish Hannah could have more skills – in all honesty yes I wish more for her.  However I look at what her life would be like if we had not done all the work with her and I shudder at where we would all be right now.  We are excited to move out of school life and to the consistency of adult programming.  So far – so good!

Matching tat time

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

I wonder message 68 year old me has in store?

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

 

 

 

Still aware #lightitupblue

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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