All things considered, though stressed beyond belief, I think we are managing this new normal ok. There are ups and downs but the silver lining is we are all healthy and thriving. I’ve pointed out the good and bad through it all but in light of it all I’ve tried to stay mostly positive on my blog. But here’s a picture of the ugly side…the one on the left is her arm the one on the right is my arm.

The aggression towards herself and towards her family has been quite frequent. It happens when she doesn’t want to work, when she isn’t getting her way, when there’s a change in routine and for reasons we can’t figure out.

We’ve had these bruises before. It was back when she was struggling with UTIs and gut issues. She’s not in pain this time. This is confusion. This is loss of structure and routine. This is loss of our village. This is quarantine. This is the ugly side of autism.

We had a huge moment today! It may seem so little but for someone with autism this is a huge step.

So… Courtney went into the fridge today. This usually means she wants milk. I took a second to finish what I was working on and then went to go get her milk. I found her holding her milk cup and standing by the paper towels. I soon realized She was trying to get towels because something spilt in the fridge when she opened it! As a co-worker quickly pointed out when I shared this story, that is executive functioning which is very hard for kids with autism and she did it with independence! She is my superstar!

E-learning has been tough. I am remotely teaching 9 preschoolers with severe special needs while trying to run a household and teaching two girls who need 1 on 1 help to complete their e-learning. Courtney has not enjoyed me being “teacher” at all. Whenever I sit down to work with her either on school stuff or do a teletherapy session with her she will bite herself and bite, pinch or scratch me. As time has gone by I actually have moments where I dread sitting down with her because who really wants to be beat up by their child. But I also don’t want to see the regression this extended time away from school and therapies will cause.

Since this is my profession and we do have a great school team and home team that We are still connected with virtually, I have come up with a few ways to structure up her day. Though it’s still a struggle, I do find the struggle is less on some days.

Today was one of our better days. It probably helped that I didn’t put as much pressure on her but we did still do work. One of the assignments she has to complete every day is talk about things she sees in a picture using her talker or verbalizing. She can be good at labeling when she wants to. Today she apparently wanted to because she was verbally labeling things in a picture. Here is an awesome recording of my little girl actually using her voice to tell me what colors she wanted to color her train! There are no pictures of her because we were using the recording feature on the app that the district is using to send us lessons.

The days are tough but moments like this keep us going.

We decided to look into getting a special needs stroller for Courtney. I struggled with this decision because I let myself believe they are only for those who are not mobile and mobility is not a problem for Courtney. That is exactly why we need it though. She is too mobile. It is hard to take her out in public safely because she likes to run off and she’s not one to just hold your hand but she loves when we push her in her stroller. A walk in a stroller has also been helpful in calming her down when she is upset or anxious.

Today we got to try one out. We feel we found the perfect one. It will be pink just like this one! Now we just need to wait to hear if insurance will cover it!

I’m seeing this as a decision to help my family. It will help when I have to take the girls out alone. It will help us continue to brave the different adventures we take as a family. I see it helping Courtney feel safe and included.

Today’s highs and lows brought to you by one exhausted and proud autism mom…

Low: Courtney is only wanting to wear pajamas. I know, don’t we all during this time? That’s fine and dandy but we as adults know that some days pjs have to come off and though we won’t like it, without issues we will change. Not the case with Courtney and some kids with autism. Courtney has started aggressively fighting me on changing out of pjs so I am trying to be consistent on making her change everyday. Today I lost at that battle. When I went to change her after a morning bath she insisted on pjs and I gave in.

High: So Courtney insisted on pjs and the ones she chose without her realizing just happened to be short sleeves. That has been another battle these days. She has to have long sleeves on. So mommy win! Yes, she’s in pjs but she is wearing short sleeves. Courtney-1, mommy-1.

Low: a new behavior has creeped up. Suddenly when we aren’t paying attention we will find Courtney running around the house naked. We found out yesterday that this means that she demands playing in the tub right then and there. This is a low because no matter how much I try to structure up her day she really is running the show. This demand for tub time the past few times has not always been at a convenient time. Well this morning when she demanded it, I ended up giving in. I’m an autism teacher, how can I not keep my own child on a routine?! And when she demanded it for a 3rd time today after a therapy session, before I could get the tub filled, she ended up peeing in the family room.

High: What’s the high on the bath issue? This child usually hates baths mostly because the sound of running water. Though she still gets anxious when I’m filling the tub she tolerates it and she is loving being in the bath! She is also starting to tolerate me washing her hair when she’s done playing in the water.

Low: We really have tried to have some type of routine during the day. In the mornings we have been going for a walk and then playing in the backyard. A few times recently she has decided that is not what she wanted to do and she rather a car ride. This child is as strong as an ox and is extremely aggressive. I try so hard to not give in to the behaviors but some times, that is how we get through our day and of course we are seeing it bite us in the butt.

High: So I should add that a few of the times we gave in to her demanding a car ride when we have had other plans is because she has actually verbally requested “car”. VERBALLY!!!! How do you not cave to that?! When it came time for a car ride today, she was so excited. She typically goes in my car. I told her she was going in the white car which is Joe’s. She immediately verbally said, “black” (my car is a dark grey). I said, “no white car”. She then verbally said, “black car”!!!!!! Not only a verbal request which is a new thing for her, but a two word request! Well guess what! Joe pulled his car in and pulled my car out!

So there you go. Again on a day where my family was going to talk about finding the “good”, Courtney showed me that as tough as things are, there are some super good moments too!

Some of my family members do a zoom call every evening. We joke how my participation is fleeting since I’m trying to manage the chaos in my house while chatting but no matter how chaotic I won’t miss it. There’s usually a chosen topic of the call. Topics range from trivia games, bingo, favorite something or something more thought provoking like, what is something “good” during this crazy time. That was last night’s topic. Last night I actually had difficulty coming up with something though I did and it truly is something I have been enjoying. Tonight, though, the “good” really hit me. But first let me recap the day…

Today was really hard. I mean REALLY hard! Both girls were in nasty moods. Courtney was very aggressive to both herself and me. We actually had an appointment today to get her fitted for a special needs stroller. (More on that to come.) We went to get in the car to head to our appointment and Courtney decided she wanted nothing to do with getting in the car. It took both Joe and I to carry her screaming, scratching and kicking body to the car and both of us to get her in. Her fight or flight was so high her strength was unreal. There was no buckling her so we gave in. We rescheduled our appointment.

Courtney is really thrown off by all of this as the whole world. What this does to a child like Courtney who thrives on a routine is unimaginable at times. I made it my goal this week to structure up things. So far it’s not working but things like this take time.

I let today get the best of me. I even got snippy over text message with friends from work. Thankfully, I have some awesome co-workers. One even let me cry with her.

Then came bedtime. The day left me feeling defeated. Out of nowhere Courtney decided to climb on my lap and snuggle with me. Alyssa, in a jealous manner, joined in. Soon it turned into tickles and climbing all over me. So there it is. There is the “good” in all of this. The girls are my “good”. Their innocence. Their smiles. Their laughter. Today was awful but in the end, they made me smile!

To my favorite set of siblings on this National Siblings Day…as much as I worry about your relationship and how it is so different than I thought it would be, I am able to see how special it truly is. You two are teaching each other more than words can say. Love you both to the moon and back!

Remote learning for two teachers and two children who need assistance to complete their remote learning is in full swing and let me tell ya…it’s hard as hell!

Today was probably one of the most difficult days of remote learning since it was booked with one meeting after another. I haven’t figured out zoom/google meetings while managing toddlers yet. It also included Courtney’s iep meeting and I held a meeting for one of my students. Can I just say, I miss the support of my village and I miss my school team. I finally broke down during a meeting with my team. I’m struggling managing this new normal as an autism parent/teacher, how are my families managing? I wish there was more I could do.

It was a tough day but then I get moments like in these pictures and I can’t help but smile. As hard as this all is I will never take for granted the extra time I’m having with the girls.

Teletherapy did not start off well at all but I think she is slowly but surely getting use to it. I’m even seeing some carryover! She never knew what to do when she saw family on FaceTime. Now she actually will say hi! Which is so nice since that’s the only way she is seeing family.

Today was feeding therapy. Do you allow food play in your house? Not only do we allow it, we encourage it. The food we are working on right now is dairy free yogurt. Today she painted with some that we added food coloring to. We got a few licks! We sure had fun, Ms. S!

We went for a family walk this morning to help me de-stress from remote teaching my own students and to keep the girls from climbing the walls. Courtney was getting agitated on the walk and Alyssa decided to take on the job of cheering her up from the bank seat. She started playing with her hair while singing Twinkle Twinkle Little Star. Low and behold, Courtney was happy! I should add…I think Alyssa is officially the only one that can play with her hair. I’m not crying…I’m bawling! Absolutely love my girls!