This picture makes me reflect every year. It was taken 4 years ago. It’s a picture of a father and his little girl walking into the beginning of a journey that will last a lifetime. I knew what I was doing when I took this picture. I wanted it to catch just the two of them. I was ready for what was about to happen inside those doors. He was still holding on to hope. Them walking thru those doors was the end of months of me trying to convince him that our little girl needed help and lots of it. The other side of those doors was where Autism was about to become our reality.

So much has happened in the 4 years since this picture. Time really does fly (except when you are in a pandemic). We have all grown in so many ways since this day. The ups and downs, the steps forward and backwards, the laughter and tears have done nothing but make our family stronger.

I’m a proud mom, enjoying a hard boiled egg with my daughter. Couldn’t tell you the last time Courtney and I ate the same thing for a meal. Loving this moment. Why did we choose hard boiled eggs as a food item to work on? She has always enjoyed watching me peel my eggs and one time a while back she grabbed it out of my hand and started peeling it herself. So we went with it. It’s been probably over a year. Her feeding therapist had success at the clinic but I could never get her to eat one at home. I guess teletherapy has its advantages because I now get to enjoy an egg with my little girl.

This past week was tough with Courtney. I think she is officially done with this whole “remote” learning and teletherapy thing. When quarantine first started and teletherapy began she definitely struggled. We immediately saw an increase in behaviors such as biting herself, and pinching, biting and scratching Joe, Alyssa and me. It was frustrating but I also expected it. In a blink of an eye her whole world changed. I worked really hard at not letting it bother me. I kinda took the mentality of I would probably be getting bite, scratched, pinched if I were at school, I can handle it from my daughter too. I was also able to stay positive about it all because although we were seeing behaviors she was also continuing to make some progress.

As remote learning and teletherapy slowly became our new normal we did see some decrease in behaviors at least towards us, but not towards herself. In fact, the biting self behavior increased and continues to increase. Pretty much the biting is happening on and off all day long. As it has been increasing my heart has been breaking for her. Her bites are hard enough that they leave bruises. I can see these bruises all day long and it just reminds me how much she is struggling.

Tuesday’s teletherapy session was what finally broke me. Courtney was off and as the therapist and I kept trying to work with her by giving her breaks, making the demands easier she continued to try to tell us she wasn’t having it. Fortunately, our internet caught on she wanted nothing to do with therapy and it crashed. But it was too late, Courtney had already hit a point of no return. She had one of her worse meltdowns to date. What finally calmed her? Time alone in a tub of water and a bubble machine blowing bubbles in her face.

As I watched her become happy again I felt broken. I kept asking myself if I had anymore virtual therapy or remote learning sessions in me. Heck, does Courtney have any virtual therapy and remote learning sessions left in her? Her poor arms and knees that are full of bruises don’t. On the other hand I also know giving up on it all isn’t the best option for Courtney either.

My village of teachers and therapists may not be with us in person but it was at this moment that I realized they are still there to help us. So I poured my heart out via email to both her school team and her private therapists. The past few days I have felt them rally behind us ready to find ways to support us so we can still thrive as a family during this new normal. Her private PT put me at ease as she said in an email “whatever we can do to have your back we will do” and I know they will. They have since the beginning of our journey and I’m sure they will find a way from a far too.

Courtney’s aggression will likely be an ongoing part of our journey but so will my village and together we will find ways to work through them. And sometimes we will just let baths and bubbles solve the day’s struggles…

It is easy so easy to take for granted especially as a parent of young children those little things that come so easy for children. But those little things don’t come easy for all children.

Fine motor activities are not easy at all for Courtney. Actually, she despises most fine motor activities. Or they involve non-edible items that she ends up just eating. Though it appears we may have found one.

Today Courtney pulled out dot markers that I purchased recently. I set her up at the counter with the markers and a piece of paper. She independently opened one up (opening containers is an OT goal of hers) and started making dots. She them handed the marker and cap to me so I could close it. She repeated this for every color. 20 minutes later she made a beautiful creation. ALL ON HER OWN! She never sits that long and she usually needs 1:1 assistance to complete an art project. Her finished creation is beautiful and I will treasure it forever.

I’ve never used the word “autism” around Alyssa. I didn’t hide the word, I just never directly told her, your sister has autism. Others may have told her, I don’t know. She clearly knows something is different about her sister. She caught on without us having to tell her that Courtney needed extra help and attention. I just chose not to use the word. Not really sure why I chose not to. Maybe I didn’t want the word to scare her? Maybe I was worried it would get in the way of their relationship? Maybe I just wasn’t ready for her to have to understand it? Maybe I wasn’t ready to answer her questions about it? Whatever the reason be, I just never used the word autism with her.

That is until yesterday. Why yesterday? Again, no real reason. I asked in a Facebook group one time when and how parents talked to siblings about autism. They pretty much all said that there will come a time where it will seem right. They were right.

It’s become a nightly routine during this quarantine that joe or I take Alyssa outside so she can take her dolls for a walk in her doll stroller to put her babies to sleep. Joe has even done this in the rain. It was my turn last night. We walked past one house and she started talking about how the house had a blue light the other day and asked why. I knew right away what she was talking about because this house has this blue light every April in honor of Autism Awareness month. This house does this because a child with autism lives there. So I explained that to her. I told her that autism is what Courtney has. Autism is why Courtney struggles with talking, with listening, and why she gets so frustrated sometimes.

The conversation ended there. I was ok with that knowing that in time, she will probably bring it up again. It just so happens she asked again about the blue light on our family walk this afternoon. All I said this time was the blue light is for Autism Awareness. I asked her who has Autism and she replied with a smile, Courtney.

Alyssa is truly amazing. She already knows she wants to be a teacher (and a princess). She talks about it every day. The two of them get on each other’s nerves constantly like all sisters but as soon as she knows Courtney needs help with something you see Alyssa switch to the “big helper” role. Watching her take on this role is nothing short from amazing and beautiful.

So maybe that’s why I never used the word. Alyssa doesn’t care. Courtney is who she is and she will love her no matter what. That, my friends, is Autism Acceptance.

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!