Tag: autistic parenting

Having… THE TALK

sparklesrelic

There’s those big important talks we need to have with our kids. The birds and the bees, death, anti-racism….. neurodiversity.

I’ve always been a strong advocate of telling your children their diagnoses. It is a part of them. It is a sense of understanding. It is an explanation for how they see and experience the world it is not a negative to be hidden away. It is not ‘just’ a label. (I’m looking at you, Boomer parents).

In fact. My counsellor asked me today: how would a diagnosis have changed your childhood? Dude. That’s so hard. BUT, if my parents just told me. If they just said “hey, you are this thing they call “autistic”. It means you process everything a bit different”. Then. At least I wouldn’t have felt like an alien. At least I wouldn’t have felt unknown, unseen, like a fake…. At least I would have known their was a legit reason typical society didn’t work for me.

If I knew I was Autistic, maybe my teenage depression wouldn’t have run so deep.

If I knew I was Autistic, maybe I wouldn’t have struggled with weight loss as a way to gain a sense of control over life.

If I knew I was Autistic, maybe I could have given the nurses a heads up that I totally shut down in pain, and they would have believed I was in labour.

If I knew I was Autistic, maybe I could have sought out coping mechanisms instead of being thrown into the depths of infant-induced sensory overload.

So. I do not yet know how my own children’s brains work. I feel they are much more typical than mine. But, I also feel like 14 months into Covid regulations that they are potentially having any Autistic social tendencies forced upon them. Mommy’s brain however…

The girls and myself were all in the washroom. I just wanted to have my 5 minutes of face wash self-care. They were extra hyped up today. One shouted in glee and tried to slam the door. (If your auditory senses are anything like mine, you know how much a washroom reverberates noise. Uhg). I felt my anxiety spiking. And it was only 7am.

“Mommy has to tell you something important. Brains work in different ways. Daddy’s brain is something called ‘neurotypical’. That’s a big word to mean he feels comfortable with most of the world. He is great with people. He hears and feels things at a calm level.

Mommy’s brain is Autistic. That means it works differently. One way is that mommy has super senses. My ears and my eyes and my nose and my touch all work really really well. So I can see things other people can’t. And I can hear things across the house. And I feel things really big. Sometimes this is like a superpower! I can find little bits of glass or hear when you wake up. Sometimes there’s so much happening, my senses go AHHHHHHHH! and I need a quick break.

Now. I do not know how your or your sister’s brains work yet. They might be like Daddy’s or they might be like Mommy’s. Or, they might even be a little bit like both of us. Either way, it’s pretty cool.”

Who knows how much the 4.5 year old took in of that. But, she stayed surprisingly attentive. I’m sure a week or so down the road she’ll spew out some tidbit about mommy’s superpower eyes helping find missing lego pieces. That’s how I’ll know she actually listened.

Until then. I’ll brainstorm other differences to tell her about. Or over analyze where she may fall on the spectrum of all abilities. And keep telling her, “cause Mommy’s Autistic, that’s why”, whenever she asks me, “but WHY?!”

Functional toy play…

sparklesrelic

When I was a kid, one of my favourite set of toys was a collection of bouncy balls. Yes. There was great satisfaction on the repeated bounce and catch sounds and sensations. And it was totally awesome watching and learning about the different ways they would bounce by how you threw them, what the surface was, how dense they were….

My real play, though, created this huge imaginary world where the bouncy balls had names, roles, relationships, deep personalities, and ever-changing problems to overcome. It was a complicated world that I could happily play in for hours. I am sure there was a relationship that paralleled Rachel and Ross. I know it was a tragedy felt by all when the one brittle ball lost a chunk of himself. (His name was Bubba and he was never the same again).

Looking back on it brings a smile to my face. I can still see myself fully engaged in immense, visual, exciting play. Feeling as disappointed when a storyline ended as when one finishes an enthralling book. But, I had a huge wealth of plots and ideas to choose from. I had been reading since 3, after all, and had been enjoying my older sister’s teen novels and tv dramas for years.

However… Now that I’m an adult and surrounded by these ideas of “functional play”, I wonder what I looked like to an outsider. Sitting in my room alone for hours. Lining up bouncy balls, making them take turns rolling down ramps one at a time, reorganizing them in different locations constantly. It doesn’t look “fun” or “creative” or “normal” or…. “functional” from a neurotypical viewpoint.

Balls are for bouncing.

Balls are not for rescuing their long lost childhood friend from the lair of an evil sorcerer to only discover that the way they touch your hand sends sparks through your body and soul. No. That’s boring, repetitive, unimaginative non-play…..

Parenting suggestion:

Get down-right down- on the floor.

Watch your child play. What are they doing? How are their eyes, their face reacting? Could there be more happening than you are even aware of?

Gently try to join in by mimicking their style. Don’t change the play. Don’t make it ‘right’. Try to see it through their child eyes instead.

Be content to just observe if they do not want you interacting. That’s a great way to build trust and safety.

Please, just get in the car..

sparklesrelic

I hate mornings.. Like really truly do. If I could stay up until 2 am every day, but get to start the day climbing out of bed at 9.. 9:30, my life would be significantly better.

I hate waking up and having light hit my eyeballs for the first time. Ow. I hate cold floors. I hate food first thing.

But, what I really, really hate is that the deadlines seem so URGENT. We HAVE to be out the door on time, or else we are going to be late for daycare. If we are late for daycare we will be scolded because now they have to rush the kids for school drop-off.

Let me just add here, that it seems easier to just take the kids from my car and put them into the daycare van for the quick drive to drop off the older kids. Especially compared to having to get ALLLLLL the kids into the car as they continually shed their coats and shoes in the excitement of play.

And is there anything worse than to start your day being scolded? Let’s just add in some grief about the type of jackets I managed to put on my kids or whether I forgot yesterday’s lunch container in one of their bags.

Then, you always need to get from that drop off to your own work place. deadlines, deadlines, deadlines!

kids + work…..

Further, there are so many small things to organize and a long series of tiny tasks to complete. My husband, the lucky bastard, gets to leave ~20 minutes before I leave with the girls. He does what he can with the availability of awake or not children. But, my mind focuses on the needs of myself and the girls:

  • clothes for 3.
    • Don’t forget the bloody socks.. That’s 6 socks in total.. Naw screw it, I hate the things.. 4 socks.
  • Did everyone pee?
    • yes, that includes you, little miss potty trainer who probably does not need to pee until Mommy’s hands are full and she is 1/2 way to the car.
  • Any chance we brushed our hair? No? cool…
  • Food for at least 2, milk for 2, tea with oat milk for 1
    • Thank gawd the husband usually takes care of these items…
    • Otherwise the kids eat Eggos in the car
  • Lunches for at least 2
    • try to appear like a healthy and loving mom
    • try to appear like I know what type of food my children would actually consume that day
    • try to appear like I didn’t just throw a pack of crackers and a tub of cream cheese into a re-used gift bag
  • Ideally create an edible breakfast or lunch.. super ideally, BOTH! for myself.
    • likely eat the breakfast at work..
  • Backpacks.. where were they left, what was left in them yesterday, what is missing that needs to be in there
  • Shoes and Jackets for 3
    • Nevermind.. Make it 2.. I hate jackets anyway
    • I will wear shoes long enough to get to work.

And then… THEN… the herding of the wild cats. You would think it was a relatively easy job. I just need to take the above tasks, apply them to 2 delightful little humans- and sometimes to myself- and put it all together in the car. I mean the car is even in the garage so I do not need to deal with the constant rain or frosted windows or heated up seat belt buckles. The kids can walk. The kids can carry their own backpacks. The kids CAN climb into the car using their own limbs. You would think it would not be that hard.

So, tell me why I spend so long repeating “please go get in the car. No. No, do not take those out of your backpack to check which spare underwear I packed you. Clean up, get your jacket, go into the car. *sigh* please leave your sister’s bag alone. She wants to- yes I know you CAN carry hers and yours, but it is her backpack and her screaming suggests she is unhappy right now. Can you head to the car? Just.. To the car. you can bring your Eggo.. Yes, the plate, too. Please.. car.. go! Mommy’s hands are full of all the things.. Can you carry your backpack. Because it’s a daycare/work day that’s why.”

“please.. pretty pretty please just get in the car!”

Highlights:

My kids friggen love me and just want to be with me alllll the time

I didn’t have to make the Eggos, or the milk cups.

Tea is always tastier made by someone else

They Can get in the car themselves now

They canNOT get back out of their seats once buckled in!

Things that DO help…

making lunches the night before

checking backpacks the night before

Letting them pick their own clothes- EASY!

When daycare sent home a lunch meal plan for the week. (okay, I was irritated, but it was so helpful)

Not leaving their shoes in the car where they kicked them off

taking advantage of their buckled in selves to go back inside and scream at a pillow.

So, instead of targeting anything in the blue box. I wrote this post. Good luck, Morning Me.

Grief.

sparklesrelic

I meant to start this blog by writing daily. We’ll get to time management another day…

We had a friend pass. No, not covid. But Covid sure didn’t make anything easier.

But grief… You’d think by now in life, one would have gained more understanding of how to cope, how to feel and share the emotions, how to comfort loved ones… I have very nasty words for whoever first “declared” that autism = lessen, dampened, lack of emotions. No. I feel it all. I feel it all at once. I feel my pain, his last moments, my husband’s sorrow, my friends’ fears, his family’s emptiness, the world’s now missing light. Sometimes it gets to be so much that I can only stare. I don’t see anything external or hear anything. I’m too busy reading through all my thoughts and checking and re-checking everything that can be done.

We’ve all heard the 5 stages of grief: denial, anger, bargaining, depression, acceptance… Can we feel all of them at once?

As with everything in the world. Parenting puts such a spin on it. How do you tell your child about a death in their world? How do you help them understand when they are so little? How do you support them when you do not yet know how to support yourself?

Well, here’s my best attempt at this- one of the hardest parenting problems. And not at all where I thought I would be starting in this journey:

Show Your Emotions

Emotions are not something to hide or shame or be embarrassed by. Emotions will not scar your children. In fact, just the opposite is true. Share your emotions to teach them that emotions are natural and okay. Expressing one’s emotions means that you can create connections with others. It means that you can be your real self. We need to model this for our children.

So, we cry in front of them. We tell them how we feel and we tell them why. “Daddy is sad because he died”. We are sad right now. It is a hard time for us right now. We will not be sad forever, because we will keep him in our heart.

Mine are too little for me to tell their full comprehension of all these big, complicated emotions and feelings. But, I know they hear me. I know they hear my try to be there for them. I know because my daughter cuddled me the next morning after that last conversation and told me I was in her heart.

Be Honest

Tell the truth and tell the whole truth. We tell the kids what happened at their age-appropriate level. Hiding the information from them, like hiding your feelings from them will only lead to confusion and possible fear. And you know they can tell when you are out of whack. Let’s show our children the respect they deserve by not pretending everything is hunky-dory when it is so very much not.

My 2 year old knows Mommy and Daddy are feeling sad right now. She knows a loved one has died. I am sure that those words do not mean much to her yet. I am sure she is young enough that she will not remember this time.. or him.. He will just be Mommy and Daddy’s memory. A spot at our family dinners that we tell her used to be filled with him.

My 4 year old knows we are sad because of a death. She kinda gets death because, well, every SINGLE Disney movie has dead parents. She is worried about seeing his daughter, as she knows we only see her with him. She is scared to lose her friend. She comes in and out of understanding of not seeing him again. She know that we will do what we can to see her friend again.

Answer Their Questions

There are probably going to be a lot. It is good to answer what you can. Why… Where… What… When.. Let them know that there is room for questions and their wonderings. Let them have the time and space to process. They may have a thought then. It may be the next time they see your tears. It may be next month, I don’t know.

And- it is OKAY to say “I don’t know”. It goes hand in hand with being honest and sharing your emotions- parents/caregivers do not need to be superheroes. I’m not sure about you, but I DEFINITELY do not have all the answers! I might learn more as time goes and be able to share more, but for now I tell my little girl that I am not sure. That I know pieces. That I will tell her what I can.

Make Their World Less Scary

Again, this all combines together. When our children are left without the answers or the full answers they need, they create their own truth. If I left it at “he was sick”, what would her mind create in this current pandemic world? What would she combine with her knowledge of “sick” and of Disney parents being dead and Mommy being in the mid of allergy season? God, it’s terrifying to think of what she might imagine of what might become her reality.

So I tell her all the details of how it is different. I let my mind go wild and racing down paths of all the possible and all the impossible. This is probably one of the major benefits of how my mind works. I can see it all in a matter of moments. So I see what she might see and I can do my best to head her off before she has a chance to go careening down those paths herself.

  • No, he didn’t have “the sickness”.
  • No, mommy and daddy aren’t going to get sick that way.
  • Yes, everyone else is safe right now.
  • Yes, your friend still has her mommy.
  • Yes, we are all still together.
  • Yes, we are sad now.
  • No, we will not be sad forever.
  • We might not see him again, but we’ll have him in our family forever, and that’s special.

Disappointment and Frustration merge

sparklesrelic

When the kids mess around and wreck your awesome plan.

Does this happen to you? You get a fun, heart warming, memory making idea to do with your kids. It’s special. Usually for me it’s cosy and cuddly or it’s creation based. Think: build a fort and cosy up with all the blankets and pillows. Cuddle close and watch Disney on the tablet. Or go to the dollar store and get fun loose piece art supplies and spend the afternoon crafting!

homemade play dough rainbow

But the kids struggle to transition or they get over excited and can’t complete any task or they simply attack each as they do. I try to remind them of the joy we are aiming for. I see it in my mind’s eye and I crave the mommy-daughter moments and connections. I wish I could put my vision into their heads.

Each failed request, every ignored task, I see my image waver. It falters. My heart breaks a little.

I’ve never learned to deal with hurt or disappointment (or many emotions for that matter). I express it in frustration. I get exasperated. I want to yell “come on!!! Just put on your shoes!! We have a PLAN”. I want to cry. I want to throw something. I want to make some noise to block out the difficulties.

rainbow play dough Christmas trees

Sometimes we persevere through and we get to those cosy moments. Or those photo worthy creations. But I often struggle to move on from that disappointment meets frustration.

How do you stop a negative feeling?

How do you move with time to be in the present?

The Journey to Diagnoses: Childhood

sparklesrelic

I’ve spent the past almost decade saying “I should have been diagnosed”. Through deep delving into my own psyche and experiences, long conversations with like-undiagnosed friends, and brief back-and-forth with my sister and mother; it felt so relatable.

I was an extremely sensitive, overly shy, highly imaginative, fiercely independent kid. I was selectively mute. I did not speak to adults other than my parents. I spoke only to my immediate family and a few select friends. I played aloneMy big cousin, tell me of asking little 3 year old me why I didn’t talk to her mommy. I shrugged. With coaxing, I managed to tell my Aunt, “Merry Christmas”. I was 3 1/2 and it was the first ‘outside’ adult I ever spoke to. I was “very cautious” my dad says. I sat down and crawled over floor transitions long after I learned to walk. My mother tells us they didn’t want us to have labels. Such an 80’s mentality….

vivid snapshots

I remember French Preschool. I was in it because my bff was part French Canadien and would be going into French Immersion. Everyone is sitting around in a circle on the carpet. Everyone is taking turns to say this weird word. I do not know it. I do not know what it means. I do not know what it looks like. So, I do not know how to say it. The word goes around the circle. They all do it. They all know it. I’m an outsider and I’m terrified. I don’t speak. The teachers try to coax me. It’s apparently a big deal to everyone else. The word was “bonjour”.

My daycare centre was not my favourite place. I can’t tell you why, but I do remember crying there All. The. Time. One day I cried, asking for my parents and not understanding why I couldn’t see them. The workers put me in an empty room by myself to get me to stop crying. I was scared and lonely, so I cried more. It was someone’s birthday and there were cupcakes. I was told I could only have a cupcake if I stopped crying and was allowed out. I cried more.

We took a lot of road trips throughout the province for camping, family visits, sightseeing. I couldn’t do much in the car without getting nauseous. So, as a young elementary kid, I taught myself how to determine travel time. I would watch out the window until we passed a sign depicting KM’s to the next town. I would then look at the speedometer and the clock. I feel like I had to re create my equation most road trip, but I could, in my head, calculate within a few minutes when we would arrive at the next town. For fun I would check my answers at the next road sign.

My favourite ever class in Elementary school was when my Grade 7 teacher set up for myself and 4 other kids to work in the hallway at our own pace. We had our textbook and went through the math working on as many or as few questions as we needed to for each unit. I finished the book easily. Being in charge of my own learning like that was liberating!

I could read by age three, but didn’t want to seem odd. So I told my parents I would read again when I was suppose to. Also at three I wanted to learn chess. My dad told me that when I was old enough to set up the board, I would be old enough to learn. He stuck to his word when I came back shortly after to show him the correctly set chess board.

I hated food based on its colour, texture, or acidity. I made my own dinner every day for a couple preschooler years: peanut butter sandwich and a yogurt. This still surprises me because yogurt has one of the worst textures…

I had reoccurring nightmares when we first moved into our house. I was 5. An old man was stabbed in the back and died. I can still see it. His image and spirit haunted me until I moved out of that house.

Due to some poor babysitter choices (my older sister and cousin), I saw some horror movies way too young. For all of childhood after that, Chucky was standing at the top of the stairs, tucked just around the corner so I wouldn’t see him until I turned to go into my bedroom. Freddy Krueger was going to come out of the toilet if I stayed in that room too long. I can still see his hat appearing.

I had zero sense of my body. I was about 8 when my parents gave up listening to me sniffle or trying to teach me how to blow air out of my nose. I feel like it was a couple hours that they left me in the bathroom to come out once I blew my nose. I remember just not comprehending how to put all the simple steps together into a fluid system.

I had to go to a physical therapist when I was about 11 for serious knee pain. They repeatedly tried to direct me to “flex that muscle”. I remember being in tears trying to figure out how to move my body in the ways they needed me to.

I loved basketball and was relatively good at it. Despite my lack of height, I could make a basket, I could run to get into position and get open. Setting up defensive blocks made me feel a power that my normally tiny self did not feel. But I could not show those skills when it came to the drills. I could sink a basket on my own, but I could’t “do a lay-up”as I just could not get my legs to do the steps while my arms did the ball work while my head thought about where on the backboard the ball was going to hit. If they just let me do my own thing, I’m sure I could have been a star! (well, a star as far as the 10 year olds go)

Mommy needs a break!!

sparklesrelic

I think the best self-care thing I have EVER- like ever-ever- done for myself was installing a locking knob on my bedroom door. Our ensuite had one, but there is still so much sensory overload hiding in a bathroom with sunlight streaming in the window, at least one kids bangs on the door echoing through the tile room, and little sad fingers reaching under the door. Now, I can lock the door and lie on my bed in the dark with a cocoon on blankets and pillows around me. And if the door banging permeates that haven, I can always get behind a second locked door into the washroom.

~I know its not just me: a cocoon muffles all those other sensory inputs while locking your body into place~

My eldest needs breaks, too, to stop the spiral or flailing body, hyped up actions, or cycles of attention seeking aggression. All which, of course, immediately over stimulate me. So, I’m (desperately) hoping that modelling helps teach her this strategy as effective and super acceptable.

Fantasy World: I feel frustration, annoyance, or overload rising slowly.. I tell my kids in a sing-songy calm voice, “Mommy needs a break, I’ll be back in 5!” My children look at me with loving, calm faces, “of course, Mommy.” I go into my room, lock the door, lie in my cocoon, take some slow deep breaths, do mini meditation or visualization exercise. Then, I emerge. My engine is set back to “just right”. I am in the “Green Zone” and ready to interact as the mom I always planned to be. I’ll show them how much I love to be their Mommy.

Reality: Due to the multiple children, desire to keep them both safe and alive- including from each other, and the sleep deprivation of young kids + insomnia; my reactions go from 0-60 before I am fully aware it is happening. My whole body is a burning ball of tension that wants to explode out. I manage some calm but firm words to my kids. No effect. I yell or slam a door to release the uncontrollable tension. At least one kid cries to see me upset. I apologize and comfort the tears while sacrificing my need to reduce physical sensations. The crying and hugs and guilt now only make everything more intense and I feel it all start to cycle in again. Usually one hurts me or gets very in-my-face (which is practically the same thing as physical pain to me). By the time I make it to my room, I’m at more of a “please.. please.. Mommy just needs 2 minutes… I love you.. 2 minutes please..” There is a struggle to get the door closed and then such a satisfaction in that locking mechanism. I usually still need to release the new build of tension from getting through that door. I need my own noise or scream into a pillow to hit the release. Then, I can start my cocoon time… and stumble through some breathing or calming thoughts. And step back out across enemy lines. My engine teeters back down out of the red. My body is heightened and my nervous system is ready fight or flee. I beg myself to just be the mom they need. I wish more than anything that they will remember the loving moments more than these.

My 2021 goal is to learn to identify those early signs in my own body. Take preventative breaks.