It starts at 7:55 am. Hannah’s alarm: BEEP BEEP BEEP … I have my delicious cup of coffee in my hand and don’t wait or wonder if she will get up on her own like she has been taught for so many years. I know she likely won’t. She has regressed. “Hannah! Get up – time for school!”. Without any expectations I take my partner in crime (my delicious coffee) up the stairs to start my autism day. “Where is Hannah?” I say. But Hannah prefers a different greeting and suggests, “Where’s my pretty girl?”. I change it for her, “Where’s my pretty girl” because after all she is beautiful. “I’m right here” Hannah says as she’s sitting on the toilet. “Aunt B,’s asleep”. She is disappointed that her 101 year old Great great aunt was not awake during an attempted visit yesterday. I assure her that her and her dad will try again soon. “I can’t see Aunt B.”. Trying to ignore the obsessive talk, I continue getting her dressed with the same “no expectations” attitude. I have given up that she will one day dress herself. Together we get her dressed … I do what I have to and Hannah does what she can. This is well with my soul. It’s 8:10 am.
Hannah comes down the stairs and I ask her what she wants for breakfast even though I know the answer. “Toast. and. peanut butter”. And then autismly tags on “I can’t see Aunt B. anymore” After explaining again that her and dad will try again I try to maintain the “no expectations” attitude (this is all so much easier with my coffee in hand). Again I do what I have to and Hannah does the rest. I have dropped expectations that she will get her own breakfast. Still well with my soul. But Hannah tries something new … she likes to cut her toast in half and almost succeeds! I ooze with pride! “Great cutting Hannah!” I exclaim. “Aunt B.s asleep” Hannah replies and hugs herself in an angry self hug. She gets over it -kind of and finishes her breakfast. We head upstairs for hair brush and teeth brush. It’s 8:20 am.
We open the drawer to where the hair brush is. Molly the sensitive retriever cross runs down the stairs knowing Hannah will be uncomfortable and her and I will have ‘words’. In my mind I start to go down the ‘wtf’ road as her hair really is not that tangly and the reaction we get (like have gotten for years) is so over the top. I forget. I forget that she has autism and I get all wtf-y when it doesn’t suit me. Real mature. Real inspirational-ly. I get the specialized ‘wet brush’ that is actually quite amazing and the expensive but worth it Kevin Murphy hair detangler and we get to work. It is horrific for Hannah and Molly is nowhere to be found. I feel horrible putting her through this pain everyday. We get her toothpaste and toothbrush out knowing that her last dentist visit was a success! The dentist only could catch a mere glimpse of her teeth and didn’t see anything urgently wrong. In the midst of the lack of effective tooth brushing we. were. doing. something. right! Or so I choose to believe. We finish the struggle of brushing the teeth (never really seeing a tooth) and put a little bit of blush and perfume on her. She loves this and I love doting on her in this way. There is no Aunt B. talk. The traumatic hair trumped Aunt B. It is 8:30 am.
We have the ‘getting ready for school routine” down to the minute.
Hannah gets her boots and jacket on and I quickly write details about her day in her home/school journal so she can talk about something in class. I mention that failed attempt at the care home and that a new attempt will happen soon. They will likely hear about it at school. Hannah is being extraordinarily slow so instead of insisting that she pack – lowered expectations/well with my soul – I quickly dump her ipad, journal and lunch in her backpack. She puts her back pack on and incorrectly twists the strap in the same way every day. I note that I should try to teach her the correct way because if she can consistently do it incorrectly and can learn to consistently learn to do it the correct way. I forget to write my intentions down in my notebook and hence has not been taught. Hannah gets to choose a show while she waits for the bus. “Hannah – do you want Clifford the big red dog or Dorie?” I ask knowing the answer. “How ’bout some Clifford?” Hannah answers. Bingo. Right. again. We turn on Clifford and Hannah giggles in delight and hugs herself in an excited fashion.
Molly the sensitive retriever cross waits for the bus and excitedly and gently herds Hannah to the front door once the bus arrives. “Goodbye Hannah! I love you! Have a GREAT day at school!” I shout out to her as she independently with Molly’s help leaves our house. “Aunt B.’s asleep” Hannah replies. I mentally note that “Aunt B.’s asleep” really probably means “Bye Mom thanks for all you do and I love you lots”. The door slams. Hallelujah! I am grateful for her school staff. Bless their weary souls they will be hearing about Aunt B. all day. But have the tactics to move on. It is 8:40 am.
I go on with my day with on and off thoughts/worries/anxieties of Hannah and her future. 3:25 pm comes before I know it.
The door opens and the Queen walks in. “Hello! Hannah Jane! How was school?” I know I won’t get a ‘straight answer’ but ask anyway in my lowered expectations/well with my soul new approach. And don’t do the level playing field thing to a parent of a special needs or any atypical needs parent by saying “I know what you mean – my kid doesn’t tell me about their day either”. If you need explanation – message me. Hannah replies, “I can’t go to school anymore. Not today”. I forget my lowered expectations/well with my soul momentarily and start to correct “Hannah school is done for today. I asked how WAS school?” Such a balance of letting go and teaching. I’m exhausted. Hannah continues “Not today. No school today”. She does not have the communication skills to answer a question involving ‘how was’. But I forgot. I’m old.
We get her favourite snack ever. Ketchup chips. I tease her as her almost whole face is covered in red crap (not literally – in the special needs world one uses the literal crap quite often) “Hannah – I don’t like ketchup chips. They are GROSS …. ewwwwwww!” Hannah maintains her neutral Queen face and keeps eating. My awesome humour is lost on her. Sigh.
But I do know what will get her … some exciting news! “Hannah – guess what?! Today we are going to see Emily (her older sister) for supper!” Hannah’s face lights up! “HEY Goob!” she exclaims and hugs herself getting red ketchup chip crap (not literally) on her shirt from the hug. Hannah couldn’t be happier as she recites the greeting she expects from her sister. ‘HEY Goob – want some chicken fingers, french fries and diet PEPSI?!” Diet pepsi is smack talk from Hannah to her dad who is an avid diet coke fan – who knew? Hannah is funny!
Hannah finishes her snack, washes up and uses the washroom. I take her in the car and we wait to get gas. I have a runny nose in the vehicle and sniffle my way through my words, “Aw man I need a kleenex! Where’s a kleenex?” Hannah in her echolalic and great mood echos me, “I need a kleenex (sniff sniff). There’s no kleenex (sniff sniff)”. I laugh – Hannah is so funny! Her humour is NOT lost on me!
We meet Emily for supper. Hannah is elated and fly/gallops through the parking lot of the restaurant – this ‘thing’ she does when she is really happy. Emily greets her sister – according to plan “Hey Goob!” Hannah is all smiles and follows through on a half hug.. Hugs are tough. After the greeting is over Hannah reverts back to being extremely autistic and zones out of all conversations. I start to go down the wtf road remembering that she was excited and forgetting that she has autism. Once again. When we purposely engage Hannah she can engage on 5 second interactions. I am torn. My type A- personality makes things difficult for me.
We go home and get Hannah ready for bed. “Good night Hannah – I love you.” But Hannah still has her sister in her mind “Hey Goob. Bye Emily. Thank you so much Emily”. This is my new lowered expectation/well with my soul homework. Hannah cannot engage like someone without autism and my expectations need to change. I suppose we’ll see with autismly aware 2018 brings!
April 2 is light it up blue day – I still don’t have my blue lightbulb. Maybe I’ll check on amazon for next year. I’ll put it in my notebook.