While it feels like we are in week 1,000,000 of this bloody pandemic realistically it is more like 79 weeks. A little less dramatic. Hannah’s day program has been closed down without any correspondence from our provincial government (until one email recently) and she has been at home in our care. To keep our days engaging we work with a schedule-ish and so we have adopted the title LDP (Loeppky Day Program). It’s a tough tough program and the director (me) is a real piece of work.
At LDP we strive to have balance in our days. Self care (for Mom and for Hannah), doing chores that she is able to do – all set up for her independence and success, exercise, television time (thank goodness for Disney plus), tasks that maybe are not her favourite but stretch her mind, fine motor and everyday must have FUN! Sounds a little intense maybe however Hannah continues to do very well at LDP. One would say she’s thriving!
It was a number of months back that we were kind of looking for something for Hannah to do that could fill maybe half an hour of her time. Because Hannah is unable to plan any activity for herself, it becomes a little tiring to constantly plan for every moment of her day. Hannah is able to perform activities if it has been taught to her but planning, implementing, cleaning up after, etc. is not possible.
Hannah mildly enjoys colouring however she loves to give gifts to people. She often will recite out loud how the gift giving exchange will be. The star is her and the receiver is so happy and grateful to her. This recitation ends in a huge smile and self hug. Something like this, “Here you go – here is a present for you. Oh THANK YOU HANNAH! THANK YOU SO MUCH!” However when the time actually comes to give the person the gift her autistic shyness or feelings of being overwhelmed over come her and often she is just silent.
So to review – day program shut down, enduring the LDP with the tough director, looking for tasks to do, mildly enjoys colouring, immensely enjoys gift giving. We decided on colouring a page of a s.i.m.p.l.e. picture the LDP director would draw, like a simple flower, a rainbow, a smiley face, a tree or a fish. As we knew that Hannah really enjoys our church and loves our church family we offered to her to colour a page for every mailbox in our church. That would mean 200+ pictures to colour. Hannah became very excited to start colouring and started reciting the gift giving conversation.
This was a very long process and a lot of markers purchased. Hannah would colour only about five pictures per day however she worked on this project nearly every day. The whole process took a number of months.
When she finally completed the project we contacted our pastor and asked if we could add some details in the church’s bulletin to explain this picture in the mailbox. He offered something a little more special. A chance for our pastor to ask some simple questions to Hannah in the morning service. We got the questions ahead of time and practiced at home, practiced with others and spoke often of how it would go. Hannah was so excited to put the pictures in the mailboxes and to sit up front and be a part of the service. Her smiles and self hugs were constant right until the microphone went close to her face! But she managed to quietly answer each question and then bask in the glow of a job well done!
Many people either spoke to her after the service, phoned her, emailed us, thanked her while we were out and about later on and even a special bouquet of flowers and a card from someone.
This project was a win for everyone. It provided a meaningful task for Hannah while her day program has been closed and it gave Hannah a chance to be a giver. The people in our church family had a chance to have their days brightened just a bit.
It is when there is so much ugliness in the world that I look to the simplicity and innocence that this disability life brings to us and I can forget for a moment or two and enjoy this pureness and lovliness.
This is my third Father’s Day blog for those of you that are counting. One thing you will notice is my writing skills have not improved appreciably since my first blog in 2017. Also, I usually write this on a flight to or from somewhere but since I have not been on a plane in 16 months, this is my first land writing.
In a year (or year and a half) that has been anything but typical, there have been many reasons for people to be angry, frustrated, disillusioned, or disheartened. Much has been written and spoken about Covid and there has probably not been a more galvanizing issue that has strained relationships in my lifetime than Covid 19. Family, friends, neighbors, coaches, pastors, churches, business leaders, politicians, farmers, front line workers…you name it and there are people with varying but strong and emotional opinions on Covid. Now let’s add in vaccinations, restrictions, etc..and most of us will agree it has been challenging time.
So, what does this have to do with a blog about Hannah? Hannah’s world has also been turned upside down because of Covid. Her connection for the last 16 months has been primarily Ang and me. As restrictions ebbed and flowed, occasionally it has been her sister, grandparents, and some friends. Hannah’s employer, Blue Sky Opportunities, has mostly been closed for her, so the connection has primarily been her mom and dad. Actually, her mom during the week as dad is still fortunate to continue to have a job to go to each day.
Now, I will be the first to admit that Hannah does not understand what is going on in the world today. She does not understand why things are different than they used to be, why friends and family do not pop over, why we are not going to visit people, or to the movies, or why she is not going to BSO. No people we can visit at Eastview, no bowling with her friends, no Special Olympics, no traveling on a plane to a sunny destination in winter to visit a coveted beach. All she knows is that her reality has changed.
However, Hannah has not once complained about her circumstance. She has not said anything disparaging about a family member, a friend, a neighbour, Dr. Brent Roussin, or any politician. She has not questioned the medical establishment. She does not understand the implications of getting a vaccination or not getting one (although we try to help her understand). I am sure she misses her co-workers at BSO. I know she looks forward to seeing family and friends. But she does not complain. She does not show bitterness. She wakes up and gets on with her day, a day that will be filled with whatever it is her mother has planned for her.
So what you say? I say this. I believe that day in and day out Hannah is the best example I can think of that reflects the love of God here on earth during this tumultuous time. She does not care if you are young or old, what gender you are, where you stand on what issue, how you voted, which church you go to, or what you might have said about her or someone she loves. She will treat you with kindness, smiles, and respect. She will not carry the baggage that so many of us do these days. She does not worry about tomorrow. She will show you love with a purer heart than I could ever hope for. AND I GET TO WITNESS THIS EVERYDAY!!! She is an inspiration to me and a constant reminder of how I should be better…can be better. She reminds me that I can do better. I AM SO PROUD OF HER!!!
We have heard it said to us that Covid’s work is to weed out the weaker members of society. It is survival of the fittest!! Well, I’m afraid that if that’s the criteria for our society, Hannah’s future does not look bright.
However if we strive for a society where the best of humanity thrives, Hannah will be at the front of that parade carrying the flag.
One of the benefits of not traveling is staying more current with my work. This has meant more time in the evenings together and more time home on the weekends. This has allowed me to spend precious extra time with her. Whether it is going for a ride in the truck (anywhere, she doesn’t care, as long as it is in the truck), going for a bike ride, a walk, horseback riding (yup, that’s new), kayaking (16 of the last 18 days), playing catch in the hot tub, or watching yet another episode of Good Luck Charlie, I have been so grateful for our time together this past year and half.
In a previous blog I talked about my father who passed away 30 years ago. How I believe if he was still around today, he and Hannah would spend a lot of time together. She would regularly get picked up by him and taken out for a drive with Grandpa. They would go everywhere and go nowhere but they would spend time together. I have felt like in the past year I have been able to play more of that role in Hannah’s life. The gift of Covid for me has been in taking advantage of the opportunity it presented. The gift of time at home. There for her more often, spending time together, and enjoying each other’s company. I think I may have taken over the role my dad would have played in her life. How cool is it to think of it that way on Father’s Day.
During this time when we are asking others to appropriately educate oneself and accept those with disabilities in particular autism I had found myself thinking what is my favourite story of true inclusion. When Hannah and us as parents felt completely at home with her autism and disability. I had blogged this story before a few years back however I wanted to re-tell it during this time. It is a story that incorporates her autism and developmental disability together. While it’s a re-tell it makes me feel happy and not much these days has that ability to bring pure happiness.
A STORY OF TRUE INCLUSION FOR ALL – A SPECIAL OLYMPICS MIRACLE
It was a number of years back. Hannah was still in high school. Her ability to tolerate noise and commotion was very limited although it was improving. We saw as she was able to attend school dances and somehow certain noises and celebrations was something she not only tolerated but was beginning to enjoy. We started to see that she craved relationships. It was around that time that we were starting to add some weekly events in her life with respite workers. We knew the local Special Olympics head coach and other coaches. All are welcome in the Altona Panthers chapter. All bodies – abled, partially abled or disabled. All competitive levels, all needs with or without personal support staff. The middle school gymnasium was full to capacity!
We used one of our respite workers to take Hannah and be her environmental interpreter during this time. I was so anxious as I thought about how she would deal or not deal with the noise, the cheering, the action. It did not take long for my anxiety to be put to rest as it was clear that Hannah was the belle of the Special O ball! It did not take much longer to realize that Hannah was there for the party atmosphere and for the socialization. Something we had not seen before. And not so much for the athletics (she perhaps takes after her non-athletic mama here).
I have said before that Hannah is extremely passive, hyper-sensitive to movement and extremely slow in most things she does. That includes walking and running is not something she is able to do. If she is happy her run is a step, hop, hop, gallop, small leap and she gets where she needs maybe a teeny bit faster. She ends up going more vertical and maybe even a touch backwards than forward moving so there’s that.
After some time had passed and we knew Special O was an extremely successful event for our girl the invitation came out to compete in the Special O track and field meet in Winnipeg. I ignored the paper as I didn’t think there was an event that included a step, hop, hop, gallop, small leap that was measured vertically and slightly backwards. However it didn’t take long for the head coach to remind me of the paper brought home and that Hannah should sign up. Ha!! I didn’t feel there would be any way but when I learnt that joining the track team meant that her Special O time would be extended a couple of months so I thought sign this girl up!
Hannah began training which meant learning to run, learning what ‘on your mark get set …” meant and learnt to run at the sound of a gun and to try to desensitize its noise. We worked on staying in her running lane – to which she got irritated when we corrected her, and taught her to run ACROSS the finish line – in her autistic mind she could NOT pass that line and it became an issue each and every time. A huge deal with LOTS of work. But we did work at it. And her respite workers did as well as her school staff. All hands were on deck to get this girl to the track meet!
But when I saw some additional paperwork about her running events I read that her relay must run in “less than 30 seconds”. Let’s re-visit that last sentence. “I read” Okay I felt Cinderella’s coach had turned back into a pumpkin. There was no way that Hannah could run her short relay in 30 seconds. When I talked to the coach about this he informed that I had mis-read it and it was needed to run in “more than 30 seconds” so all could be a part. This was the race for her! Inclusion-o-rama.
The day of the race came and we all excitedly drove off to the stadium and met her team there! When it was her turn to run her race the coaches came to get her and mentioned that us as parents could not come on the field but we could stand on the sidelines for environmental interpreting if needed. I was so nervous! The benches were full and so many of the athletes were extremely fast and talented! Despite the kindness and and friendliness of Special Olympics we felt very small and overwhelmed at that time. Kind of ‘what have we done-ish?”
Because of her age, size and race time she was kind of in a category of her own but raced it with two other younger girls. To see her small body standing there on the large field without any support workers was unbelievable, overwhelming and emotional.
She stood at the starting line with her opponents flicking her fingers and looking sideways. The announcer announced the beginning of the race by shouting, “On your mark, get set” and *BANG* when the pistol! The other two girls starting running, beautifully staying in their lane. But Hannah stood there alone. We all cheered for her to go. Us as parents, her coaches, her family and her Altona Panthers team and probably many others! Run Hannah!!! RRRRUUUUNNNNN!!!!! Finally Hannah looking looking rather perturbed started walking, crossing every lane possible. She stopped a few times I’m sure feeling extremely overwhelmed. One of the track volunteers standing beside us on the sidelines beside us shouted “Over here Hannah! Over here” – meaning run here to the finish line. But Hannah took this suggestion literally and walked over to us a few feet from the finish line. We all pointed to the finish line and shouted and cheered and encouraged her to go to the finish line! Hannah now even more perturbed that she misunderstood and now had to go further walked toward the finish line and stopped her one inch before the line!! As we cheered and encouraged her to cross the line she shot daggers in her eyes at us and probably argued but then she did it!!
I would like to say the crowd went wild but I don’t really know. We went wild! We were so proud of her, her coaches, her family and her team were proud of her and she was a delight to watch during this race! Even though it was a little unusual we felt her success during this race.
At the awards ceremony because she was kind of in a class of her own she won a medal. When they called her name one of the Olympians said “Hey – that’s the girl that walked the whole way”. I was about to say, “…. AND?!!” but then remembered where we were. Hannah climbed the podium by herself and accepted her award. Through her emotions of being overwhelmed she powered through and was so very, very happy.
I felt a deep sadness as we left the stadium away from the special olympians and support. And more sadness as we entered ‘typical world’. So maybe I question is this a story of true inclusion? My sadness had no chance to steep as all I could see was Hannah hugging herself and smiling all the way home!
Hannah has attended the Special Olympics track and field every year after this. She has added on additional relays, shot put and long jump. Every year this event is one of my favourite events of the year. The inclusion, the cheering for all and the joy is infectious. So infectious that awhile back I joined up as a Special Olympics coach. Hannah still attends (not in Covid restriction time) with her respite worker and loves every minute of it.
If after the restrictions have lifted you find yourself able and willing to help in an organization that is so extremely rewarding please consider joining up in Special Olympics.
This is an extremely difficult post to conjure up. We are going into our second year of difficult but do-able restrictions. Our days in the life of autism are extremely underwhelming however after I McGyvered a technical social media poll it was indicated people wanted to read another ‘day in the life’ as well as a story of inclusion, which I will post tomorrow (it’s one of my favourite stories EVER!) So I am ABA-ing myself and doing the hard work first THEN I get to re-visit my favourite story of true inclusion.
Full transparency – a day in the life story is a cut and paste style story of our person with autism. This is not one certain day but events throughout recent days and incorporated into one day for this blog purpose.
Also while it is Autism awareness time Hannah also has a developmental disability and in the past moderate health issues (which we have not forgotten nor take for granted). Additionally while it is Autism awareness day I as her mom and caregiver, am writing this and some of my perspectives are interwoven in the story. While there is a push for parents to not take on or be woven within their child’s diagnosis – I concur with that and will work on that after the pandemic is over. So for now it will be a little bit about me. Check in, in one year.
A DAY IN THE LIFE:
I am an early riser. I enjoy waking up early and being alone before Hannah wakes up and we start our day together. Hannah’s day program has been suspended since mid-November. With the suspension of four months last spring and the second wave of suspension she has been home with me 24/7 for going on nine months in total. We have not been without support like this since she was age five.
Our day has a definite flow to it. Almost too good where I am a little in a rut and bucking anything that takes control away from me and our day. Something definitely to look out for that doesn’t become a habit. Caring for her in her vulnerabilities has become so much a part of me I sometimes cannot see past it.
Hannah wakes up mid morning. I say “Good morning!” to her and she tells me two things. She’s “wearing her kitty jammies” and “we’re going to have FUN today”. We take a few moments to ooh and aah over her pajamas and the game plan for today. Every day we talk about fun. It may be going to the grocery store to get a product or laundry. Hey – it’s all in the delivery.
We get breakfast ready which consisted of two chocolate chip cookies BECAUSE THAT’S WHERE WE ARE RIGHT NOW DURING THIS PANDEMIC. While they are oatmeal and cereal based in an effort to raise her low iron they still are a plan b and me viewing myself as not being my best self. I have since found a slightly better breakfast cookie version for which she loves as much. She is so happy in the morning and hugs herself as she eats her cookie. I ask her, “Why are you happy?” and she says “Cookie”.
Then one of the favourite times of the day occurs as Hannah goes off to her room, gets dressed mostly on her own and makes her bed all on her own. It takes her a long time but we have time. She can do it on her own and I have learnt to not interfere (which is very hard). We have taught her so much of her skills that I beam with pride every time she completes tasks on her own. Hannah is very passive and lets people do things for her – even if she can do them. Doing tasks for her rather than with her or letting her is so detrimental to her abilities as she can regress very quickly. I may have lovingly suggested to a certain parent that his knee caps may be broken if he does one more thing for her that she is able to do. Again – not my best me. I’ll work on that too. After the pandemic.
I peak in on her making her bed. I never get sick of watching her systemically make her bed with her pink fuzzy pillow, her “Brick” from “the Middle” pillow and her two long gangly stuffed lions lovingly placed on her bed. Any window into how she feels is very special.
We get ready to go to a neighbouring city with my mom, Hannah’s “Nana” who is a part of our restriction bubble. We get our jackets, shoes and masks on as we head out on some essential tasks. I am proud as Hannah chooses her mask knowing she now knows how to put her mask on by herself and also that she tolerates a mask. She does so much better than some typical learning adults and she has set the bar very high for me on mask tolerance.
As we drive off Hannah hugs herself and smiles. She loves being with her Nana and she is flying high! She mentions, not even off the driveway, that “We will be going to McDonalds” as she has linked this community with McDonald’s and we have gone with it BECAUSE THAT IS WHERE WE ARE IN THIS PANDEMIC. I mumble something like ‘sure’ without confirming nor denying.
Arriving at a building centre we wait for Hannah as she takes extra time putting her mask on. We walk in and see shoppers and staff either half ass masking or not masking at all. We steer clear of them and head out to our area in need. A staff approaches us with his mask under his nose right by Hannah. I call her over to me. He smiles at her and assures me she doesn’t have to leave. He’s being ‘nice’ to the disabled. Bless his heart (insert sarcasm). Hey buddy if you want to love the vulnerable then put on your mask. You can’t have it both ways. Hannah tolerates the sudden change in location for her which could have gone either way.
At noon we pick up lunch that is not McDonalds but still is chicken fingers and fries. She loves it and is chowing everything while mumbling that “we will be going to McDonalds”. Nana, jumps to the pump for her grand daughter and starts to plan a second lunch at McDonalds which we talk through realizing it really isn’t necessary.
Heading home Hannah continues to be happy talking about ‘fun’ for the day. I tell her ‘This is it! This was the fun.” We try to have a daily balance of rest, television, FUN, exercise and chores. I would say we have nailed it nearly daily.
Once we are at home she heads downstairs to watch Mickey Mouse. She can be downstairs as my nerves are not strongly equipped enough to handle that squeaky little b@s!ard. That’s just where we are in this pandemic. As she watches TV during our ‘separation time’ I do a little bit of work on my job as a self employed interior decorator. Basically I have suspended most visits during this time limiting our close contacts and caregiving full time.
When TV time is done she comes upstairs and helps out with the laundry. Folding towels, putting away her clothes and our clothes. We worked on this so many years ago in her ABA program. It was really tough and she hated it. But now she does really well and loves doing it.
As Hannah walks to the living room she flicks her fingers fast and furious. This has become a huge regression during her time at home and after we noticed callouses on her fingers I have tried to suggest she walk with calmer hands. I know this is somewhat controversial and may be considered “normalizing” but right now I don’t give a shit. It has just gotten so bad we will try to help her out.
Hannah sits on the chaise section of our sectional waiting for supper. This “spot” on the chaise has become a friendly competitive little game for her and her dad. Hannah hears the garage door open and knows Dad will be walking through the doors and the fun will begin! She hugs herself and laughs. She knows she has ‘won’ this round. Her dad walks in and exclaims, “Hannah Jane!!” Hannah laughs and hugs herself so tightly!! This game is a constant during our code red.
We eat supper and clean up. We get ready to go outside for some exercise. Hannah on her bike and us walking beside her. It has taken years for her to gain strength and speed but finally now we can either bike ride together or walk as she bikes beside us. We approach a stop sign with a slight incline by a busy street. We wait until it’s safe to cross. A well intentioned driver stops in the middle of the road and waves us on. Well intentioned but not helpful or even safe. We don’t know what’s coming around the corner and with the incline it often requires us to put our hands on her handlebar or on her to make it across. Depending on the day this action could be difficult for her resulting in slapping, stopping pedaling and angry words. I will decide who sees the monkey show – so it’s a no. We’ll wait. Thank you though.
Once we are at home it is time for her shower with her favourite Pantene shampoo and conditioner and her lavender body wash. We say Pantene a few times because I know she loves it and enjoy a laugh. She gets on her favourite kitty jammies. Once she is back in the living room I suggest a puzzle to which she grumbles about. When I mention life is about balance she echos “life is about balance. About balance. ssssss. UGH!!” She gets over it fast and speedily whips through her routine of ages 4+ puzzles. She really is fast and much better at it than me.
Soon it is time for bedtime and she snuggles into bed listening to her 2 Cellos CD. I tell her “Goodnight” and “I love you”. She responds to me by telling me that “we will have fun tomorrow”. Yes we will. While I don’t know what tomorrow will bring we know we are provided for.
I head out to my computer to check my emails to see if there is any update from her day program. There is no update for us on this day or ever since November from the government. We are not in this together. I fill out the government survey online. They want my opinion as well as other Manitobans on the restriction and loosening the restrictions on places like schools, day cares, kids sports, shopping centres, golf cart occupancy, casinos and gatherings of many scenarios. What has been absent from the conversation from day one are adults with disabilities in their day program. I read a ridiculous post about ‘taking back our province’ and a date in mind that all masks and social distancing are done. It’s a survival of the fittest. The post suggests with an invitation that anyone who is vulnerable or sickly continue to isolate as they see fit. I see a number of people I know and some businesses “like” the post. There are no words to describe how this feels for my daughter and her community.
As I head off to bed I realize how mentally tired I am from really doing nothing that stretches my brain other than keeping her alive and healthy and her emotional well being in tack. However as tired as I am I am grateful that she is as happy as she is and that she is safe. We can do this – we will keep plugging along until it is safe and hopefully Autism awareness 2022 will be a different story.
As I looked at the option “write” on my wordpress account my anxiety noted that it was present. How can I write when there are no immediate wins during this time? Folks including myself like feel-good stories especially during the holidays and especially when times are rough like, say during a pandemic. However writing is therapeutic for me so a-writin’ I will go. Spell check is my first non-fan of the post as it seems “uninspirational” is not a word and I got the dreaded red line. I will let you know my personality A-ish has a difficult time letting that bloody red line sit there. 🙂
Strangely these days I am reminded of a very difficult time in our autism journey. A time where Hannah was experiencing many wins in her (then) severe autism. Hannah was in elementary school and was equipped with top notch staff within her school and through St. Amant working with the ABA program. Hannah’s autism was such that she was unable to do simple tasks like sit at a desk, stand in line with her classmates (obviously if you cannot stand in line you cannot walk in line), and generally just “be” with others without behaviours. Her behaviours were atypical of autism HEY! I think we should win some sort of award – not typical for the typical and not typical for the atypical! Kind of an a.a.typical (?) She did not have angry tantrums but rather her behaviours came out in laughing fits and falling to the ground.
The laughing fits were extremely difficult to deal with in the earlier years of her life. They were weird, intense and long lasting (sometimes days). During these years we did not have access to the internet like we do now and relied on books, television shows and articles from newspapers or magazines. Autism in girls had not been studied and laughing fits were a symptom that was not highly recognized.
Hannah’s staff in the early years had an extremely difficult job in working with her. Her school EA’s and her home ABA tutors helped her overcome her autism barriers and her anxiety with lots of blood, sweat and tears (probably literally – except for the blood … but she did scratch my cornea once – a bloodless crime). During the holiday season in December the elementary school children worked on their programs, memorizing lines to poems and songs. Of course Hannah was unable to memorize lines and songs or even speak lines or sing songs. Her job during this time was to practice being. Being with her peers in a crowd, walking in a line without falling down or starting an autism laughing fit, sitting with her classmates without autism and anxiety behaviours, standing when her classmates stood. Really just existing while her peers performed.
At the beginning of school which coincided with her late autism diagnosis this would have seemed impossible. But the consistent work of her staff made it possible for Hannah to succeed. The weeks of practice, working through her tantrums, taking it step by step and bit by bit was working.
The day of the program came and I was focused in on Hannah’s accomplishments. Hannah was able to get up, stand in line, walk with her peers and sit in the gymnasium decorated for Christmas. She could sit in the bleachers with her EA by her side! All those who knew and loved her were extremely proud! But I was not prepared for was comparison. The blatant comparison of her peers and the performances of the children and seeing Hannah sit and cope. One wrong move would be a spectacle. Anything that would set Hannah off would mean autism behaviours, likely a huge laughing fit which the crowd would not understand and deem that Hannah was a really happy child. And likely laugh alongside her in ignorant delight.
Nothing happened and the children performed as Hannah sat. I could feel the pride of the parents and the grandparents as their children performed and sat. My heart broke into pieces as the minutes carried on. I was not prepared for this. As the concert ended and people filed out I sat in my chair and cried. While the work she and her staff were as great as all the work put into the Christmas program it looked piddly paired beside the Christmas extravaganza.
I soon decided to vet the amount of school functions I would attend knowing that the attendance comes at a cost. Hannah’s staff continued to work and expect things from Hannah throughout her growing up years.
Years later I forget about that emotional Christmas program. I forget that Hannah used to not be able to stand beside a person. I take for granted that I can call her name to start a conversation and she recognizes that. I forget that the skills she has came with hours and hours and hours and hours of work.
During this pandemic everyone’s issues are heightened. In our province we are at a Code Red which means no gathering of people and only essential products are available for in store purchase. In our small town our numbers have been high and we take the care of our vulnerable adult daughter very seriously. The virus is forcing us to lay low, to do less outside our safe bubbles and to spend more time with our safe bubbles. For us here it means our days are Hannah and myself at home with no supports. We are being brought back to 24/7 of no respite and now no friends or outings for her. Every day Hannah claims her mantra/demand on me “We’re going to have FUN today” to which I make up some lame ass event like driving to the post office which will BE TOTALLY RAD.
I have been struggling with feeling overwhelmed, depressed, hopeless, angry when our days have actually been going very well and fast. But then I remember something I read and believe. It is okay to feel overwhelmed and all the feels of that and know that you are doing it. It is okay to feel joyous yet anxious about the future. We have much to be thankful for among the feelings of much to be anxious about.
Hannah is enjoying the countdown to when Christmas is here. She enjoys opening her presents and really enjoys giving gifts. These are things that have not been taught but are possible due to the years of intense, hard work. We know this is not forever and soon(ish) the virus will be under (more) control and our lives will start to open up again.
“Inspiration” is defined as “something that makes one want to do something”. It does not say that “inspiration” has to be an extremely moving or over the top experience but rather “want to do something”. So am I inspired? Why yes – when I look back at her journey I definitely am inspired to keep going, to expect the unexpected even though that expectation may be low.
We wish you all safety during this holiday season. Please make good decisions to slow and stop the spread of Covid-19 and to remember the true meaning of Christmas during this time. The actof not being selfish and “do what I want when I want it” is actually very Christmassy. Know that even if you do not have a vulnerable person in your life they actually do exist. Celebrate safely now – our tables may be empty this year but then we can anticipate the filling of ALL chairs next year.
Wow – when I started this blog I could never have imagined a title like this. In all transparency currently writing is not coming naturally. Could “writer’s block” be a side effect of a pandemic? Ha! Who knew! Right now I feel more in survival mode rather than expressive mode. However I am seeing on my wordpress stats that people are reading former blogs so I feel bit of a push to write something. And maybe – like every time in the past it will be therapeutic. So once again thank you for reading and showing interest in our daughter’s life.
It has been 1, 2, 3, … 7 months since we have been dealing with the pandemic and it’s difficult effects. It has been 1, 2, 3, …. 7 months for me to figure out Hey, I can transfer what I have learned in supporting a special needs/medically ‘different’ human! Well as Dr. Phil would allude, the only thing worse than 7 months is 7 months and one day.
My experience has taught me that people that have gone through difficult or trauma can grow stronger, resilient with thicker skin. In some ways my skin is thicker however in other ways it is tissue thin. These are my own lessons:
Shit happens. It does not matter if you are a good person, if you pray a certain way or not at all, have a vision board of your life, recycle or whatever. Shit happens in life. Not everything has a purpose but I believe purpose can be found in situations. If you do the work.
It is normal to have many feelings in the middle of a difficult situation. It’s okay to be scared, happy, proud, defeated, jealous and angry regarding the same situation. Every day may be different. Heck every hour might be different! What does not work for me is not feeling and placing all those feelings that are actually there and put blame and focus on whoever and whatever come my way. (The doctor’s are ‘idiot’, the receptionist was a bag, there was no parking). Yes it is easier in the moment but not so great in the long run.
Speaking of feelings – fear. I get the feeling that some feel that fear is wrong or a sign of weakness. I feel admitting that you are afraid is not only strengthening but freeing as well. Being proactive and helpful in a difficult situation is not fear. I never wanted to walk up the steps of Variety Children’s Heart Centre. But we did. And help came. I was afraid of visiting developmental professionals. But we did and help came. Having hundreds of extra people in our life because of Hannah was not my first choice – but these people have been a lifeline.
Emotions – yes still there. I am an emotional person. Feel whatever you feel, take your moment and move on. Take that fricken moment. The gift of not dwelling is something I wished I had naturally bestowed upon me.
Trust the professionals. In Hannah’s case I am mindful that I am not a scientist, doctor, specialist, surgeon, physcologist or psychiatrist. Every step of her illnesses and developmental disabilities meant professionals, professionals, professionals. We worked well together. We had appointments when needed, phoned calls if that was suffice or nurse practitioners to help. That is their job, their livelihood. The road to wellness was long and hard filled with ups and downs. Some things worked and some things didn’t. When things did not work we went back and tried plan b, c or d.
Filter out. Your gut is probably telling you. No. Swimming with the dolphins will not cure autism. Sorry “W-5”. What will? Hard work. And not cure – but rather enable for the best life.
Which brings me to the next point – work. hard. Make it your new normal. Consistency with a solid plan in the long run works. It cannot be a waste of time. It gives a positive focus.
When things are big it is really – like really, really hard to say I am not in (non-covid *cough*cough*) control of this situation. Not being in control in your basic flow of life sucks. F**k.
Did I mention work? Do the best you can, make your decisions and make them the right one, and do not give up. It will be what it will be.
And you know what? You’re going to be okay.
Hannah has done well during this time. She has her day program back with smaller cohorts, most of her recreational programs are on hold, but we managed to find events to keep her social life as active and safe as can be. She wears a mask when needed and most importantly she is healthy. We will never forget bad cardiac, lung and trachea years. We have done hard things before and we can do them again.
If I were in the position to be talking to a lot of people right now the question may be posed to me, “You sound a little angry, Ang. Why are you so angry?” However we have been social distancing here to the best of our abilities so I have not spoken to a whole lot of people face to face other than 6′ or so apart on the streets of our town. I think most people are experiencing the emotion anger right now so I don’t think I would personally be called out on my anger. But there is one person that is calling me out and that is by someone whose name rhymes with Blang. It’s me … Ang.
I have been raging, fuming, crying in frustration over sightings and hearings of people continuing to congregate. Congregating despite knowledge being fed to us spoonful after spoonful – we are getting obese with effing information. We. know. we. know! And yet some do not either choose to believe, don’t think it can happen to them, or don’t understand how washing hands and staying a safe distance from people and touching objects that can carry a virus and continue to congregate in small or large groups.
There has been a lot of news and social media stories on boredom and schooling students at home and concerns over these topics. I am not raging over this. As a caregiver our take on this pandemic is that it hits so close to home we are putting a house plant in the corner of it.
When Hannah was three months old heart defects were detected. From there on her life (and ours) quickly went out of our basic control and into the arms of medical help. As she grew older in age her body struggled with continuous heart, lung, trachea issues and then scar tissue – a side affect from one of her heart surgeries. The trachea injury reeked havoc on her little body for years creating an un-human like sound as she breathed which got even more horrendous when the regular trachea infections came upon her. With all of this happening to her her basic immunity just seemed to be the pits and she was a little sitting duck-ish in terms of all the things she would catch (she once had cellulitis in her toe). When she would catch a cold, or bronchitis or pneumonia it was heart-breaking to see and traumatic for us each time it occurred. But this was her general life. Our schedule revolved around her health. Her sister’s life revolved around her health – though we did the best we could to keep going on as good as we could.
I would say generally the first eighteen or so years of her life her health was first and foremost in our attention toward her aside from her autism which was a whole other world.
The last five years we have enjoyed her stable health and only see mild affects of her first eighteen years. But the memories of her breathing, or not breathing, of seeing her suffer are not far in my mind.
There are so many parents like us for which this story will resonate with. When you are a caregiver of a sick child it changes you. Having your child survive becomes your only goal. This is only our story. There are so many families that have it worse and are continually caring for their child.
Hannah’s day program has been suspended. Her 40 hour/month respite – which for her was Special O with a visit to a friend’s to watch wrestling, coffee time with friends, yoga with a walk after and music night at a friends was suddenly taken away in a matter of days. She became full time at home girl with me as her caregiver. My job as her mom is to keep her safe and distanced as much as possible. Every day she asks me, “Mom and dad will take me” meaning she wants to go out. We are both “working at home”.
When the news and policies were changing in the beginning my first worry was boredom for me and how would I engage Hannah every day without any respite from workers or grandparents. But those worries soon ceased when we just began doing it and it was successful with a lot of work. It felt like we were a world away from the coronavirus and it really didn’t affect us – but of course we would comply.
Suddenly things changed when the virus was being community spread. It hit me that yes she and other people like her were extra susceptible. This has scared me so much. To go back to the time when her respiratory issues were so bad – I could not even fathom it. I authentically worried as well for people like her that the outcome would be grim.
Once I got a hold of those emotions and continued doing what Dr. Tam continuously said I felt rather at peace about her health. But then something new hit me. What if we as parents caught the coronavirus. What would happen to her? If she had been in a home with two people infected she would likely be getting it as well. Where would she go? Who would care for an young woman with autism fighting this deadly virus? There are no words to describe this but to say it authentically has sometimes felt like life or death. Families like ours have been absent in any emergency plan. I suppose it will be up to families like ours to continue squeak the wheel. While I still do not have an answer, I do know that Hannah has many loving friends, family and professionals in her life that she would be cared for if we were too sick. (In the night my best case scenario for this would be that us three just got it together and we could care for her while being sick).
While workshopping all of these emotions I have had the misfortune of reading comments on social media and am so disheartened by hearing some people’s selfish and hateful thoughts. Comments like, “Why are we shutting everything down basically for people who don’t contribute to the economy?” (I assume meaning the elderly).
After being angry for some time it hit me. Seeing people congregate and take this lightly feels like a direct hit for me. A punch in the gut. It is like they are saying “We care more about getting out and doing our thing than we care about people who are medically sensitive”. While of course no one is saying that – but that is the message as a caregiver that I receive. It is the herd mentality. This. only. works. if. we. all. who are able to. do. it. Not doing it is demanding that the team take it for you.
While boredom and fear of not using my brain for things other than “how can I keep Hannah engaged” are there it seems luxurious to think that not social distancing is even an option. In my world I know too many people that this would affect.
What’s next for me is listening (and probably crying) to Les Miserables and hearing the message again of how angry self righteousness never wins and grace always perseveres. (But I will have my phone on the 311 speed dial!) And I will keep speaking out.
Everyone is processing this time differently. Whether it is loss of work and income, working from home and navigating all that entails, trying to navigate quarantine home school or the worse case scenario personally having to deal with you or a loved one having covid-19. Here is a mash up of what our day living and supporting autism during the pandemic and keeping social distancing. I want to note that it is not only about autism awareness but also autism caretaking awareness and all that entails to support someone with autism or a disability in general. I suppose my goal in this post is to show how we are more alike than we are different.
Hannah’s alarm rings in the morning. Even though we have nothing pressing up and nowhere to be I find it good to let her sleep in a little while keeping with a little bit of structure. I have already forgotten how to say “hurry up Hannah” because we are never running late. For anything. Hannah gets dressed with the help of me. She has made some gains from last year in her ability to put some clothes on. And now we have time to allow her to “safely struggle”.
I am mindful of one of my goals for her which is to see her smile and laugh at least once a day. I can see how depression or a lack of an enriched life will affect her. So we do our best to keep her spirits up during this time.
She is dressed and excited! She’s so happy in the morning. It is time to get breakfast which is water, a granola bar and a small bowl of frosted mini wheats. Together we get her breakfast ready and set her up to watch “Big Daddy Tazz” read stories live on Facebook. I manage to quickly write in the coments, “Hello from Hannah in Altona” in hopes that he will see it in time and verbally greet her (as he tries to greet listeners each time). I nailed it! Getting her greeting in on time we hear a cheery “Hannah! Hannah from Altona – hello Hannah!” Hannah smiles the biggest smile and hugs herself. Thank you Tazz! Smile for the day – check!
After her breakfast is done we have time for Hannah to clean up a little more after herself – and she does. She is learning during this time to load the dishwasher the correct way – or rather my way – which is the same :). We continue on with self-care skills again noting we have time for Hannah to be involved more in the clean and tidy up department. And she’s rising to the occasion. I feel hopeful.
Once she is dressed and ready it is downstairs we go. We head down to the television where Hannah has a tower of shredding to do during this time – dropped off by a few kind people to help us out. I give her a small amount of shredding to do and find a television show for her to watch. This new television does not have a power button on the television and power is relied on the remote. We had been teaching Hannah to use the remote and she can almost independently do it! Toy Story is on – one of her favourites and she is excited to start shredding and television watching. I go upstairs and we both enjoy a little bit of separation form each other. At her day program she is sometimes lovingly called, “the lean, mean, shredding machine” however I see no signs of that at home 🙂
I turn over my paper calendar and note April has nothing on it. Nothing for Hannah – special Olympics, coffee times accompanied by visits with friends, yoga and the music night she attends at a friends is all cancelled until it is safe. This means no respite people hanging out with Hannah. I miss them. They miss us. Hannah misses them all, her people and the plethora of activities that have been planned for her.
Lunch time comes and I make her lunch without my helper. Once Byron comes home for lunch I quickly dodge out of the house to have 20 or so minutes of freedom. No autism, no dog. Just me and my podcast. I suppose Hannah gets freedom from me as well.
After lunch Hannah loads up the dishwasher and assists in clean up. She is getting so good at doing these tasks with assistance. We get our jackets and leash up our retriever cross. “Such a good dog” we both say as we pat our Molly on the head. Molly is getting a lot of walks during this time. We start walking and I ask Hannah if she wants music. She says yes. I ask her if she wants to hear Abba or the 2 cellos. The answer is always the same. 2 cellos. We walk as the 2 cellos play “Thunderstruck” like an electric guitar. She loves it and I don’t care what people think.
It has been garbage and recycle day here so I ask her to bring in the garbage can and recycle. She brings in the recycle can but when she goes out to get the garbage can she takes a long time. When I go to check on her I see her angrily coming into the garage with lots of mud on her face. Not having savvy enough verbal skills, I am uncertain as to what has happened but it looks really funny and I laugh at her. My reaction could have gone both ways for her, but today it went to the funny side and Hannah laughed and said “It was very muddy. It was very muddy.” What happened to her will remain one of life’s mysteries.
We note during our walk that people have put teddy bears in their windows. “Awww cute” Hannah says as she hugs herself. When we get home we find Shrek and tape him up in a window peaking through. I am uncertain if this will be tolerated but Hannah is mildly amused. She does tell Dad that ‘Shrek is in the window” later.
She gets some more TV time so I put on Netflix. I. am. so. tired. of. Shrek. While I love the sarcastic green ogre we’vejustheardenoughofitall. But whatever – we can do hard things. My pity party ends soon as I hear her laugh! Laugh for the day – check!
Now the excitement is really ramping up because it is laundry day. Years ago during our ABA years our tutors worked diligently on teaching Hannah how to put her clothes away. This was time well spent because now Hannah is borderline obsessed with putting her laundry away. During this time we have been working on extending her skills to loading and unloading the washing machine and dryer as well as categorizing and putting away all the clean laundry. She still needs a lot of help but this is a task that puts a hop in her step.
We stand in the kitchen and hear Law and Order on in the background. I hear one of the lawyers on the show say “I call to the stand Rebecca Stain”. Knowing that Hannah loves words that begin with “st” I jokingly say to her, “Hannah – stain”. Hannah laughs (another check) and I say “Oh dear Hannah – you will send me to the cuckoo bin” to which Hannah whispers “bin” to me.
Hannah gets to watch a little more television until supper time. But no Shrek. After supper we get on our yoga attire. The yoga teacher from Hannah’s yoga class has created online streamed in yoga. So her and I set up our yoga mats and do the yoga class together in our living room. She does well and loves every minute of it (so do I!)
I arrange ahead of time to Facetime one of our former respite workers and her mom who are also friends of ours. They always bring a huge smile to Hannah. We Facetime with the two of them hearing and chatting about our day and Hannah chirps in “It was very muddy” which is her way of asking me to tell them her garbage can fiasco. We all have a good laugh and I am grateful for her people. And I really miss them all.
Hannah has really been enjoying her showers so we shower her up noting there is no more steps to teach her her. While she has some skills in this case I believe we have reached our ceiling. And that is okay.
Wednesday night is Survivor night so we get our popcorn and watch the television show – it really is a highlight for our week. After some clean up Hannah gets out some puzzles for her and her dad to do. The television is on and between that and social media I note that families like ours (and there are many) are neglected in the media. There is so much important talk about coping with kids at home, safety and boredom but no talk about caregivers for those living with disabilities in a residential setting or at home with their parents. It is like we do not exist in the media. Part of that is really isolating but another part knows I have my own tribe.
Hannah goes to bed around the same time we do and it is all good – for now. I feel I am on auto-pilot in caring for her mental, physical and social well being. Knowing that aside from her autism she is vulnerable due to her respiratory and heart defects so I guard her with my life. Seeing people not social distance makes me even more afraid for her and those vulnerable like her. But not great thoughts to think of before going to sleep.
She goes into bed waiting to be tucked in. We turn on her CD with her 2 cellos playing. “Good night Hannah. Love you”. “Good night” Hannah says, “I’ll wake up in the morning.” “Yes” we say, “That’s a good time to wake up.” As we walk out of her room she continues to echo, “I’ll wake up in the morning. I’ll wake up in the morning. In the morning. ng ng ng”. My brain is tired from hearing phrases over and over again all day. But seeing her happy and healthy keeps us going. We are grateful for our provisions and that is what propels us through the day.
If you enjoy being lambasted only with constant COVID-19 stats and doom and gloom news casts then please pass on this post. At first I felt it would feel inappropriate to write about autism life during this pandemic but after some time of not being able to practice my social skills …. let’s just say my already poor filter is a little less. Plus I am trying to focus on lights in my life. So if you would like to read about church and children and Hannah then read on!
Hannah has always been welcome at our home church (Altona Bergthaler Church). Congregants have gone out of their way throughout Hannah’s life to educate themselves and follow through with inclusion so Hannah could participate in Sunday school, children’s programs and youth programs.
One small component of this inclusion includes something our church offers during the worship service called “Children’s time” which typically (okay always) involves a treat for all the children at the end. To hear the excited sounds of children running to and from children’s time is a highlight for many of all ages!
When Hannah was a child she attended children’s time with either myself or Byron accompanying her and managing her autism during the story time. As time (and enough work) passed Hannah was able to go to children’s time without us as parents but rather with a friend – close friends of our’s daughter – a much younger girl than Hannah. Because this friend grew up knowing Hannah and her parents educating their daughter on inclusion, this pairing at children’s time was effortless (at least in my eyes), really, really beautiful and heart-warming. Together Hannah and her young friend would come back from children’s time with their yummy treat and Hannah was happy.
As time passed Hannah became to old to attend children’s time so we decided to her keep her back (she naturally has outgrown many things) and she watched the children from the pews running to and from children’s time happily sitting down with their treats. Hannah’s younger friend continued going to the children’s time and started asking for a second treat – for Hannah. Hannah soon learned that even though she did not physically join in for children’s time she was still included through the treats. After the story Hannah would hug herself and vigilantly look around in anticipation to spot her treat being delivered to her. “Queen-style”.
As even more time passed Hannah’s younger friend became too old to attend children’s time. No worries at all! We looked to continue the tradition of treat bringing for Hannah. Being a Sunday school teacher at the time I spoke to my classroom students often about loving and including those with disabilities. The children soaked up my stories (or at least I tell myself that!) and agreed enthusiastically and sometimes worked out among themselves when I would seek out the treat deliverer for that Sunday.
One of our former EA’s attends our church and now has a young daughter. This little girl is brave and loving and she regularly been bringing Hannah her treats. How beautiful to see all the different children run up to Hannah and hand her the treat. While Hannah is unable to rapidly accept the treat and say thank you (that is too overwhelming for her) she will manage to accept the treat, smile a huge smile and hug herself and quietly say “thank you” when prompted. But the children know – Hannah’s smile and self hug mean “thank you”.
For this all I am grateful. Grateful that Hannah has been included without question at our home of worship. Grateful for friends that have brought up their children to include Hannah without awkwardness. And while Hannah is often stared at in other communities by young and old alike, grateful for the children that show joy in handing Hannah her Sunday morning treat. And grateful for the story-tellers/treat providers that hand over the extra treat for our 23 year old.
Matthew 25:40 lovingly tells us “Truly I tell you, whatever you did for the least of these brothers and sisters of mine you did for me.” While I struggle with the phrase “least of these” I get the gist. So while it may seem like it is only a $1.00 or so treat, it is so much more to us. It is a gift that shows that Hannah matters and that this is important to her. A gift that Hannah is approached and spoken to. And to the givers – I see God’s love in you and your offering each Sunday. I hope that they will always remember the joy that a pack of gummy’s can bring.
Hannah was diagnosed with autism late at age six. In my opinion many factors contributed to this late diagnosis included her being female (the diagnosis of autism is significantly higher in boys), her heart condition that made her health first priority, lack of awareness and lack of resources. The journey to this diagnosis included me gathering information via magazine or newspaper articles, television shows that I either recorded VHS style or were given to me VHS style or happen to catch at that moment and a family doctor that really listened to our concerns. Being the mid ’90’s there was not a computer or access to internet.
While we tried to sort out what was simply a sick child not playing or something deeper with her lack of development we noticed that Hannah really enjoyed one activity. Creating towers. It started out with wooden blocks then graduated to duplo blocks. Hannah would make large duplo block towers, the towers would crash on their own or she would take it down and she would start again. We attempted with her ABA program to show her other ways to build with duplo blocks with little success although the process in itself I feel is successful as it stretched her mind – and we all need to do things we do not enjoy just to see where our interests lie and do not lie.
Somewhere and somehow the duplo block towers transitioned to a “house” as Hannah called it. A base plate with duplo blocks forming a square, which was filled in with duplo blocks and built up – filling it all the way. For 20 years Hannah built duplo block houses. She had a height in mind, the house would be take down and started again. This became Hannah’s “thing” to do – her de-stress, her time to relax and enjoy herself. Whenever Hannah was sick we knew because she would not have energy to play with duplo blocks. When she regained interest in duplo blocks I rejoiced knowing she was on the mend. Our new home that we built had a duplo block cabinet custom made with 2 containers that fit. Hannah never really got over that her duplo blocks needed to be in two containers instead of one and her main goal became building enough to fit all unused blocks into one container.
We found ways to use duplo blocks as it filled her time and eliminated the need for us to provide activities. We monitored how long she sat playing duplo blocks – sitting on the floor with a straight back, legs straddling the base plate. What perfect posture. We sometimes watched with interest and amazement how quick she was in assessing which blocks she needed and thought someone should be tracking this and seeing if there is a pattern. She planned and cleaned up duplo blocks well. After 20 years we had it working for us. It was part of her – like a best friend, a partner, a soul mate.
Two weeks ago Hannah came home from work, had her snack and went to the washroom. She went to the cabinet where the duplo blocks are stored and stopped. She looked at the couch and said “There’s the couch”. Confused, I asked her “Did you want to sit on the couch and watch TV?” To which she said, “Yes. I don’t have time for duplo anymore”.
Concerned she was getting sick I set her up on the couch (remembering that we literally taught her how to sit on the couch to watch television) and watched her like a hawk.
Health wise she continued to be fine but daily she denied her daily duplo block building. After a week or so of not hearing the clickity clack of duplo blocks I realized something in myself. I missed it. This had been a part of Hannah since I could remember. What does it mean to take care of Hannah without the luxury of duplo block activity?! What will we do to fill that time? Her interests and abilities are not great. I was surprised that tears of sadness, a little anxiety and wonder appeared. I realized that she has outgrown things in her life – her blankie, thumb sucking and play structures. Other things like “Barney” have forcefully been outgrown in her by me.
The weekend came and I worried even more – how would we engage her day without the 1-2 hours of duplo block activity? I began putting her to work with extra errands around the home to which I was surprised that Hannah agreed to with different levels of happiness. Could it be that she wishes to be more engaged in life? Could she have hit the 1,000,000 mark of duplo block homes that it had officially expired? We will never know.
For now she is happy and continues to tell us “She doesn’t have time for duplo anymore” and shakes her cute little head. Sure would be nice if there was a “What to expect when parenting an adult with autism/special needs” book. I would settle for a pamphlet, a leaflet, a paragraph, anything!! It is strange how we take whatever weirdness is thrown at us and make it work. I suppose that is called adaptability and we will adapt to this new normal.