Isla is the first to wake up EVERY DAY. It makes no difference how late or early she went to bed the night before.
Our day usually starts about 4 or 5 am with Isla patting my foot, “Mom it time wake up?”
Isla wakes up starving… again this makes no difference how late dinner was the night before or how early or how much she ate. She knows to choose snacks from the pantry until I can make breakfast. Just like most kiddos if she can find a snack that is the LEAST healthy she will choose that one but most of the time her choices are harmless.
Isla needs help with dressing, brushing her teeth, and brushing her hair.
When it comes to getting dressed she can “physically” put on a shirt and shorts and socks and shoes BUT if she does this whole process completely alone, the shirt may be backwards or her head will be in an arm hole. The shorts may be inside out or both legs in one leg opening. The socks may be put on heel to the toe and shoes backwards or with the tongue completely inside the shoe.
What’s interesting is that she doesn’t feel the difference. She really cannot feel that the shirt is on wrong or the shoes or the socks.
So she requires supervision and help.
If I allowed her to brush her teeth alone, she would. BUT because she uses an electric toothbrush she would focus on one tooth, hold the toothbrush in one spot, and not give any love to all the other teeth that need some TLC.
If I allowed her to brush her hair, she would. BUT she would stop at the crown of her head when the first tangles show up.
Yes, it is a hard reality to accept when my 3 year old and 7 year old are more independent than their 11 year old sister, but Isla is showing GREAT signs that she is working her way to independence.
ISLA WILL GET THERE TOO in her own time, not on my time and not on the American Academy of Pediatric milestone time.
As parents we are usually put in a predicament with Isla’s growing want and need for independence and the fact that her mind cognitively is naïve and innocent. Also the Pathological Demand Avoidance (PDA) component of her autism diagnosis makes her feel like a “real adult” so throughout the day we have challenges with routine activities that she assumes she can do ALL BY HERSELF.
For example, on the weekends Isla spends a lot of time outdoors. We live on a large piece of land with 6 other homes that all belong to someone in our family. Needless to say, Isla loves to make the daily rounds BUT she wants to make these rounds alone. This requires constant secret calls and texts to the family, “ISLA IS COMING!” “ISLA IS WALKING YOUR WAY!”
Oh, she keeps our life interesting for sure.
We live on a country road and have a mailbox that is about 50 years in front of our house and across the road. Despite the fact that I worry about this A LOT… Isla loves to check the mail. Several times a day. ALL BY HERSELF.
Sometimes she does this with high heels on because, obviously. She will even look behind her as she walks to make sure no one is watching her. She wants to do things alone.
So from my window I watch. She skips and walks with a big sway to her hips and arms out like the diva she is. She stops at the road and looks both ways and looks behind her and checks the mail. She takes her time.
ZOOM in… high heels included.
She is her true self all the time. Just fascinating.
I have read that many families that have a child with PDA feel like they have to walk on “eggshells” with their child because they never know the mood or response they will receive.
I felt like this with Isla for many years but not so much anymore. If anything, I do think about everything I say to her BEFORE I say it.
If I know it’s time for lunch or nap or outside play or time to put on shoes…I go through the wording in my head before anything comes out of my mouth.
I word everything as though it was her idea and try to make her the leader and helper in EVERYTHING.
I don’t consider it walking on eggshells, I consider it knowing my child well and helping her and my family have a more peaceful day.
If you have followed me for a while you know that I like to be as honest as possible even to a fault.
We are not perfect. I am not perfect by far.
Some days, some hours of the day are very, very hard.
We know it’s the PDA, we know Isla can’t help it, but it doesn’t change the fact that remaining patient and not going crazy is very, very hard. It’s tough to put these scenarios into words for you because the reason why it is so “hard” is not because of anything really “bad”. Isla is not violent or aggressive, she doesn’t hurt us. Isla for the most part is so chill and great and fun but when Isla gets “stuck” she gets “STUCK”.
Given that these are the days of COVID-19, if June is on a ZOOM meeting, Isla wants to be on a ZOOM meeting. She will NOT drop it. She is relentless. For hours. Shoving her phone in my face, over and over and over. “Mom what password? Mom what time my meeting? Mom get app me. Mom app. Mom app me. Mom where I go? Mom Mom Mom…”
My patience tries, I try. I explain to her that ZOOM meetings can’t be initiated by her. The teacher has to give the code. The meeting is not today. The meeting for her class is tomorrow. There is nothing I can do.
“Mom what password? Mom what time my meeting? Mom get app me. Mom app. Mom app me. Mom where I go? Mom type in. Mom Mom Mom…”.
FOR HOURS. HOURS.
If Isla sees a family member use a HDMI cord to hook up a computer to a TV monitor. She wants to use that HDMI cord at home to hook up everything, even if the cord doesn’t fit. She will NOT drop it. She is relentless. For hours. Shoving the cord in my face, over and over and over. She gets out laptops and iPads and iPhones desperately trying to connect them.
My patience tries, I try. I explain that these cords are for certain laptops and TVs. I show her how the connection doesn’t fit. There is nothing I can do.
“Mom I do it. Mom it fit. Mom help me. Mom do for me. Mom yes laptop work. Mom Mom Mom…”
FOR HOURS. HOURS.
These are just a few examples guys. But just know I don’t have all the answers. Sometimes I have no idea what to do. No idea. Sometimes there are no strategies, just prayer.
Some days with Isla I cry a lot and feel completely defeated. Some days with Isla are the best of my life filled with so much laughter and joy.
But maybe that is how every parent feels, special needs kiddos or not.
The biggest change for me personally, the biggest adjustment to my life at home that I have had to continually and consciously make with my Isla girl as my daughter is … letting go of control, letting go of perfection, letting go of exact order and organization.
I have embraced the “Elsa spirit” and have seriously LET IT GO.
What does this mean?
This means that when it’s time to try out the new pottery wheel she got for her birthday that involves water and clay… LET IT GO.
I let her play until her heart is content. This means a mess. This means no real pottery will be made. This means she will get this clay on her hands and arms and I will have to find adequate protection for my table and floors BUT guess what? SHE LOVES IT. She can sit forever just feeling the clay and water in her hands. She doesn’t care about the end result, she craves the process and that has to be OK with me. I have to know that ahead of time. I can’t jump in and say, “No not like that. Stop making a mess. Let me help you shape it.”
I have to LET IT GO. We put on some great music and embrace the mess.
This means every meal time she will choose where she eats and will leave enough food on the floor and sofa and rug and chair to feed a whole other person, but I have to LET IT GO. She is eating and satisfied and happy. Crumbs to pick up are the least of my worries and a way better alternative to a full meltdown because she doesn’t want to sit on a hard dinner chair at a table and hate every second sensory wise.
I have to LET IT GO.
Coloring time, arts and craft time particularly when it involves cutting and pasting… Good LORD… LET IT GO. I make sure she is safe and not destroying furniture then I LET IT GO.
“Mom, I put on tattoos myself.” Sure. LET IT GO.
Bubble time or chalk time… LET IT GO. Bubbles will be all over her legs and concrete and hair and chalk on her knees and I have to know that and expect it in advance. Then I just LET IT GO.
We love to bake. Baking time for me, pre-kiddos was therapeutic. BUT now… I have to LET IT GO. Isla loves to bake and help. That means flour everywhere and fishing out eggshells and losing ingredients as she wants to stir and stuff is flying out the mixing bowl… but I have to LET IT GO. Isla enjoys the process, she loves the pressure of the ingredients against the spoon and the taste tasting in the end. So we put on some Food Network, pretend we are on our own cooking show and LET IT GO.
1 comment
I love this one the most thus far. Thank you for sharing Lisa 😘