This is a meltdown. This is anxiety. This is confusion. This is a little girl going from a schedule booked with school and therapies to all of the sudden nothing and then back to therapies the past couple months.

Behind the camera is a mom who just wants to hug her and make it all better but this is a picture of an inconsolable little girl. Getting near her just makes it worse.

Oh Courtney. I wish I knew what was going on in that sweet little brain of yours. I wish I could make it all better. But since I can’t I will do what I know how to and that is love you with all my heart.

Oh Anxiety, you have won this week. You grabbed a hold of both of my girls and aren’t letting go. You’ve been along for the ride for a while but this week you took over.

Thanks to you, Anxiety, you have caused Courtney to bite herself, hide in parts of the house, and refuse to come out of the car. You have made transitions harder than ever for her. I can see you in her eyes as she tries to figure out this new normal.

Anxiety, you’ve been trying to grab a hold of Alyssa for a while now as she tries to manage eating with severe food allergies but she has proven she’s stronger than you. But then came the nose bleeds. You’ve won anxiety, as she now walks around with a mirror making sure her nose doesn’t start bleeding. I blame you, anxiety, for the fact that she now has a panic attack that her nose will bleed whenever I’m on the phone or in therapy with Courtney.

Thanks to you, anxiety, you have left us feeling physically, mentally and emotionally drained this week. But we won’t let you paralyze us. We will prove we are stronger than you. If there is anything my family has proven over the years it is that we are resilient. You have a strong hold on us but we will break through.

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.