It is well

As a “perma-caregiver” keeping emotionally healthy is top of my list.  Finding a balance in life that includes Hannah’s complete well-being and my own well being is a juggling act that I have yet to see a how to book on or at least a social media meme.  During the years of medical inconsistencies and autism unpredictably my emotional wellness was not only not on the top of my list but far from any pen that would write a list.

Things have changed.  I didn’t know that they would.  Being a little tiny bit of a “Drama Queen” I regularly felt that “this is it”.  That it would always be so difficult.  But we worked onward anyway.  We worked through autism difficulties, advocated for services, took her to appointments, nursed her back to health again and again celebrating every tiny bit of wellness and joy we saw from her.

I recently had two separate appointments to assist in the healing  some of the trauma of Hannah’s growing up years.  I had realized that I was a little hair triggered when thinking about the intensity of care giving for her had been.  The appointments were from two separate people using a guided meditation technique.  (See end of blog for information).  During both of these visits I could visuals one thing.  (Insert breath).  That she is okay.  That it is okay.  That I am okay.  Such a beautiful gift to be able to partake in this with such wonderful and trusting practitioners.

I wish that at age thirty I had (nearly) fifty year old me by my side.  I wish that (nearly) fifty year old me could say to thirty year old me that it will be okay and to do what you know is right.  I see thirty year old me at night on the white wicker rocking chair with its hunter green with dusty rose flowers (hey it was the late 1990’s) holding Hannah in the middle of the night, grief and worry stricken.  I wish (nearly) fifty year old me could say to thirty year old me to grieve.  Grieve that the typical life you yearned for Hannah was not the life for her and it was not the life for you.  And that it was okay.  That you will be stronger because of it and you will have insurmountable joys because of her life.  And to know that she will be okay beyond you and she will always have love.

I did not know that Hannah would mature the way she has.  I know it is the result of her ABA program and educational years.  They were so difficult and sometimes it seemed like no progress was being made. I did not know that despite her disability that there would be a form of maturation.  Of rising above being a child while staying a child in so many ways.  I want to say anyone in the early or middle stages to keep going.  Your. work. will. matter.  

We now see Hannah (age appropriately) super annoyed with us as parents over trite issues and laughing it up with her respite workers.  We see her wanting to stay up late – usually later than us.  We see her yearn to be out and about.  Her social life is so rich thanks to a city of people.  We see  her having crushes – celebrity and real life.  We see tiny bits of independence with self help skills and abilities in general.

If only thirty year old me would have had a crystal ball to give a moment of respite for the heart ….  But that’s not how it works.  We will go onward and imagine what seventy year old me would come back to say.

(Guided meditation information in the Southern Manitoba area:
Chantelle Neufeld:  https://www.facebook.com/mindfulregeneration

Tamara Franz:  e-mail –  leavingemeraldcity@yahoo.ca

 

 

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The fight never ends: Donna and Brandon’s story

This is a very exciting post for “Life in the ‘special’ lane” (Litsl).  A first post written by a fellow caregiving parent (not including Hannah’s dad – which another one is to come, I tell him).  I am so pleased to introduce my friend Donna.  Anyone with a child with a developmental disability – autism or other – will hear and understand her story.  Her story could be my story or your story, from the reaction of her husband to the fight instinct that you will in the parents of a child with a developmental disability.

I am so grateful to Donna for sharing her story.  Please read and share with anyone you feel could benefit from either the information shared here or to help someone not feel alone.

Litsl:  Can you tell us a little bit about you and the person with a disability that you support?

Donna:  My husband and I have been married for 27 years – had kids young – 2 boys – 26 & almost 25.  I grew up all over MB and my husband grew up in St. Adolphe.  Both graduated from Niverville Collegiate.  Our older son is a high school math teacher and football Coach – just moved into his own home.  Our son Brandon, who has high functioning autism, will be turning 25 this September.

Litsl:  When did you discover that Brandon was living or going to live with atypical challenges?

Donna:  I knew from early on something was “different”.  No eye contact – non-verbal until 3-4.  Tantrums for 12 hours a day.  Sensory to noise and textures.  Would only eat certain items (would starve himself if he couldn’t have the items) so we couldn’t just let him eat when he was hungry.  Doctor I had did not believe it (he had 5 kids) and did not take my observations seriously.  I was only 22 and just was a “new” mom.  Just hang in there I was told – he would grow out of it.

Litsl:   What was your response to this news?  How did you feel?  What did you do?

Donna:  I had a different reaction than my husband.  He was upset and had grief.  I was actually relieved – as a mom it wasn’t me doing something wrong.  I am the kind of person that give me information and I run with it.  As soon as I found out I started researching EVERYTHING.  The news does change as they grow – sometimes grief does happen on milestones that don’t happen like all the “normal” kids.

Litsl:   What was your physical response to the diagnosis?  Did you let things fall as they may or did you work towards a goal?

Donna:  I was a crazy person trying to figure out how to help.  I did suffer from depression from an early age so that was hard to manage during all the chaos.  I wanted him to get the best he could get – I was all autism all the time.  That would change as he got older.

Litsl:  How did this work for you?  What were the challenges?  What were the wins?

Donna:  It does and it doesn’t.  I would ask for things in the beginning of the process – whether it was medical or school related but then realized that I had to FIGHT for everything.  I became a person I didn’t recognize.  I walked into rooms ready to fight because you end up having to.  I don’t like that person or that process.  I will fight to the death for my baby.

Litsl:  Tell us a bit about Brandon.  What does he love?  What does he not like?

Donna:  Brandon is amazing.  He struggles with some things but here are the things he is good with:  Animals, movies, video games, dinosaurs, routine.  He does not like: people arguing, noises, frustration, smells, certain clothing…

Litsl:  What does a typical day look like for Brandon?  What does a typical day look like for his supporters?

Donna:  Brandon has a regular schedule: Sunday off, Monday off – Turning Leaf worker comes: sometimes bus training, groceries, mall, Tues, Thurs, Fri – Options Day Program, Wed & Sat work at Barks n Bubbles all day. He lives independently so the rest of his time is either alone or with family.

Litsl:  What is the biggest challenge you believe Brandon faces? 

Donna:  He still needs assistance – bus, decisions…he will always need people to help him.

LitslWhat is the biggest challenge you face as you support Brandon?

Donna:  Fear – of everything

Litsl:  What does the future look like for your loved one with a disability?  What are his hopes and dreams?  What do you hope and dream for him?

Donna:  He just needs to be happy on a day to day basis.  He loves to travel.  I would love for him to find a group of friends (safe) that are not based on people we pay.  I just want him to be safe and happy.

Litsl:   Who are some heroes you have encountered in your Brandon’s life?  Who would you give a shout out too?

Donna:  There are many: Friends are absolutely amazing for us.  Family have stepped up and many are willing to assist when we ask. My husband and my older son are my heroes in Brandon’s life.

Litsl:  What do you fear the most?

Donna:  Vulnerability – don’t even want to think about it.

Litsl:  What are you most grateful for?

Donna:  Brandon has given us more than I can express.  He is a kind, gentle soul that many should look at and become.

Litsl:  What do you wish everyone who does not support a loved one with a disability knew?  What message would you love to give? 

Donna:  It’s hard. Period.  It’s Life Long.  Realizing it’s like have a baby or toddler for the rest of your life, how would your life be different when you can’t be spontaneous – ever.

Litsl:  In your opinion what needs to change in society to give our kids with a disability a better life?

Donna:  Access to everything – busing – acceptance – non bullying – friends

Litsl:  What do you think is working that makes a better life for our kids with a disability?

Donna:  Knowledge – even if you hate Autism Awareness day or Autism Speaks or Autism Canada – they are providing education to those outside our group. They might not be perfect but Anything helps!!!

Litsl:  Is there anything else you would like to add?

Donna:  You are awesome xo

Donna – you are an amazing mom.  I look to you as someone who has created a good life for you and for Brandon and I know that has not come without blood, sweat and tears.  What you have created gives me hope for our future.  Thanks for your story!  – Ang

Why can’t the world be like Special Olympics?

special o pic

(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

IMG_3377

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.