Today is Autism Awareness Day. It’s just another day for us because we live and breathe autism every day. So for today and everyday…be aware of autism, accept autism, heck love someone with autism. I know I do! This is our Autism!

April is Autism Awareness/Acceptance Month. I’ve been trying to figure out a way to honor it and came across an idea shared by another blogger. You may have heard the saying “if you have met one person with autism, you have met one person with autism”. What that means is Autism Spectrum Disorder is a spectrum and not one person with autism is alike. Each one is unique in their own ways. So for the month of April I am going to try to post a picture sometimes with a description that shows our autism. So here is day 1…

The headphones…our autism is wearing headphones 24/7 to help with auditory sensitivities and anxiety. This is OUR autism!

As the phrase goes, “love needs no words”. I agree. It does not. Courtney tells me she loves me when I’m the one who is able to calm her during a meltdown. Courtney tells me she loves me when she cuddles up to me in the middle of the night. Courtney tells me she loves me when she grabs my arms and puts them around her. Courtney has never said, “I love you mom”, but loves needs no words. I know she loves me. Courtney is now telling me she loves me when she uses her talker to say, “want mom”. She is asking for me. When she wants her mommy, she is asking for me.

Love needs no words but we still yearn to feel their love however they may show it. So when I get a task from my husband and the nanny both stating that Courtney communicated that she wanted me, you know darn right I cried tears of joy as I felt her love grab on to me. I love you too, Courtney.

Picture is of me FaceTiming with Courtney after she communicated to the nanny that she wanted me. Nanny got me on FaceTime to show Courtney that she can still see me even when I am not home.

A year ago we had just gone in to lock down. Schools across the country were shutting down. At this point we had no idea for how long. As a special education teacher and an autism mom I was in panic mode. What was this extended break (ha…that’s an understatement) going to do for not only my students but my daughter with autism.

It was early on in the lock down that we had Courtney’s annual IEP meeting. I remember feeling so proud of the progress she made up to the lockdown yet so scared that we would take a step backward for every week she wasn’t at school.

Weeks turned into months which turned into a whole year. A whole year of schedule changes, a whole year of unknowns of what will happen next. A whole year of bumps and bruises, tears and frustration. A whole year of wanting nothing more than getting back to our “normal”.

Here we are a whole year later and having her annual review again. Not only did she get through this past year but she got through it while continuing to grow. Progress did not stop. Progress continued! She flourished in ways I could never imagine!

This couldn’t have happened without our amazing village both at school and at home. I will forever be grateful for every single one of them! We needed caregivers to step up in ways that most caregivers would probably say no to. Therapists and teachers had to get creative in how to meet her needs. I had to learn how to trust that it will all be ok.

I found myself very emotional after today’s meeting. How can you not after having to recap anything from the past 12 months. But we did it , Team Cranston. We got through these last 12 months not only healthy but stronger than ever.

The picture I chose for this post was used in a previous post but I felt her “good job” was perfect for today! Good job, Courtney! You are a rockstar!

When Courtney is agitated she is very vocal. It’s a distinct sound and you know aggression will usually follow. That sound immediately puts Alyssa on high alert. She usually immediately stops what she is doing and fearfully searches out me or another trusted adult to protect her from what may follow that agitated sound. Alyssa does this because there are countless times that she has been the target of the aggression that sometimes follows that sound.

It breaks my heart to see Courtney get so agitated at times and it breaks my heart to see Alyssa actually fear her sister during these times. When these moments happen Alyssa usually wants to stay away from her for a little bit. I try to remind myself it’s not her sister she fears though. It’s the behaviors. as Alyssa gets older and grasping a little more of an understanding of Autism, we do try to talk about these moments. We talk about why Courtney may be frustrated and why she gets aggressive.

Today I watched Alyssa go from fear to then ready to help make her happy. She knew Courtney would enjoy playing in the sensory bin that she had out so went out of her comfort zone and asked Courtney to play with her. Sure enough it made Courtney happy.

It’s another example of how Alyssa as a special needs sibling is expected to mature in ways a 5 year old shouldn’t have to. It’s another example of how Alyssa is up for this challenge and handling it beautifully.

I ended today feeling burnt out, a pretty common feeling but tonight felt different. It even had me extra snippy with my family. It finally dawned on me why.

Every six months, the company that provides several hours of therapy with Courtney has to update their “care plan” for insurance to help show how many hours of therapy Courtney needs. The company has to show data that shows why she requires the significant amount of hours they are requesting. One way they do this is have the parents fill out a formalized questionnaire. Well, today I had to fill out this very lengthy questionnaire.

I know full well that in reality this questionnaire means absolutely nothing. Yet every time I have to fill it out it gives a little tug on the heart as it reminds me how far behind Courtney is in most areas of development. For some reason I struggled with it more this time. It finally hit me why. In the past 6 months Courtney has made some amazing gains in the area of communication. Gains I wasn’t sure she would ever make in the near future. Gains that have me shouting from the mountain top. Today I met this stupid questionnaire crush me and my excitement for those gains. Today I let this stupid questionnaire diminish how amazing my little girl is doing. And let me tell you, that sucked the life out of me.

I know it’s all formality. I know it means nothing about how Courtney is really doing but today I let that questionnaire win and suck the life out of me.

Oh Courtney, I don’t need a standardized test to tell me how you are doing. You are doing amazing. You are making the progress you need to make. You are a rock star and I couldn’t be more proud of you!

I decided to jump in the shower even though I was home alone with the girls. Both were in my room playing. I get out of the shower and Courtney is running around in a different pair of pants. On the floor was a wet diaper and wet pants. She soaked through her diaper so she on her own solved the problem! Now that is independence! Great job, sweetie!!!!!

While a lot of adults are binge watching new shows I choose to rewatch old tv series that I’ve watched before. The one I’m rewatching right now is ER. Go ahead, laugh at me…lol. The most recent episode I watched really triggered some emotions for me.

Recap of episode…an older brother and sister were brought into the ER after a bad car accident. The brother was badly injured while the sister’s injuries were not as major but it was apparent quite quickly that the sister had some pretty significant learning disabilities. In one scene you also found out that this brother and sister lost their parents a while back so the brother was taking care of his sister. The brother needed emergency surgery and the last scene you see with him, he is saying, “I am all she has, I can’t die”. I emotionally lost it. Well needless to say, and expected in a tv drama, the brother died.

This storyline hit me hard. So very hard. I often think about the responsibilities that will fall on Alyssa after Joe and I die. And any time I think about it I usually end up in tears. Though I’m sure she will handle it as awesome as any special need’s sibling will, it is still hard to think about. I think part of what gets me is it is only Alyssa. I have a brother with special needs that will likely always need to live with someone. I think about how lucky he is to have 9 siblings that will always have his back once our parents are no longer with us. That is not the case for Courtney and Alyssa. Because of this, I often wish I was able to have another child.

All parents worry about their child’s future, but as a special need’s parent, that future is even more scary. I try not to think about it too much but I do need to think about it enough so she is taken care of the day we are no longer able to. So ER…you triggered a lot of emotions. Next time, give me a heads up.

A year after starting Courtney on her current talker we started seeing some significant regression in her use of it. The few two word utterances she was using went back to just 1 word, she was needing more prompting to use it and needed a significant amount of modeling before she learned where a picture was. At that time all icons were showing on her talker.

I remember the evening well where her private speech therapist recommended that we do what is called masking on her talker. Masking is when you hide some of the icons so it is less visually overwhelming and easier for her to find the icons she uses the most. As a teacher of children who uses communications, I knew this was moving backwards. I was devastated. I even sent her therapist a text after the session expressing how devastated I was and felt like I was a failing her. Felt it was all my fault. He immediately called me back to assure me I was not a failure. He also reminded me that it was likely because of all of the major gut issues she was having at that time.

Fast forward more than 2 years later. After 2 years of both home team and school teams working very hard with her, she has not only regained all that she lost during that regression but also has grown leaps and bounds with her talker. Gains I wasn’t sure 2 years ago if we would ever see.

At parent/teacher conferences last week, Courtney’s school team gave a little nudge and mentioned that they think she may be ready for her system to be unmasked. Meaning all icons be available to her again. I talked it over with her private therapist since he has been on this journey with the talker with us the longest and he agreed, it was time to try it out. So this week we made the big step and gave her access to so many more words. A day into it and so far no signs of it rocking her world.

There is nothing more beautiful than watching a non-verbal child find the power of words. The mountain is still steep but she is climbing it in ways I never imagined!

I absolutely love this picture our nanny sent us while Joe and I were enjoying a mini “staycation”. It’s Courtney sitting in a waiting area with her during Alyssa’s dance class. Alyssa started an in-person dance class recently. For her activities, we carefully select the ones that allow us to have one parent take her while the other parent stays home with Courtney. It is not easy for Courtney to sit and wait then add having to wear a mask…pretty impossible. This weekend it was unavoidable though…our nanny had to take Alyssa to dance and bring Courtney with. We told her and prepped Alyssa that if Courtney couldn’t handle it, they would have to leave early.

So needless to say, we were so happy when we received this picture and a text saying, “so far so good”. Everything about the picture is perfect. I love seeing her wear her mask and actually wearing it correctly (it is usually short lived) AND I love the thumbs up. Savannah has taught Courtney to give a thumbs up when she asks her if she is “good”. So here she is telling Savannah that she is “good”. So proud of Courtney for letting us push her out of her comfort zone and couldn’t be more grateful for our nanny who was up for the challenge.