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.

I have struggled with how to talk to Alyssa about autism. she is well aware of Courtney’s differences. We will talk about that but I barely ever refer to Courtney as having autism to Alyssa.

Alyssa has been seeing a psychologist for a couple months now. This is to help her with some anxiety we are seeing and some of the struggles she has with being a special needs sibling. For this week’s session we watched some Sesame Street Videos of Julia, the character with autism.

Alyssa knows Julia. She saw the episode where they first introduced her. We actually have a Julia doll. We’ve shared with her that Julia has autism just like Courtney but never went in to a discussion further than that.

Today while watching videos of Julia I asked Alyssa if she knew anyone with autism and she immediately said Courtney. We then talked about ways Julia and Courtney are similar. We also watched a video that had Julia’s mom, dad, and brother in it so talked about how our families were similar. I felt it was our first real discussion about autism. Such a bitter sweet moment.

After her session Alyssa caught me off guard with a question. She asked why she has a sister with autism. It made me a little emotional. I had no idea what she meant by the question or how to answer the question. Honestly, Alyssa, I don’t know why. So I gave her the only answer I could give her…”because we are the perfect family for Courtney”.

I am truly overwhelmed with gratitude. Courtney has a love for animals (on videos or from a distance) and a love for letters. She has been watching this YouTube video of someone searching for these fisher price animals that have letters on them in ice over and over and over.,..

Well it became my mission to find the toy the animals were from. Like any fisher price toy, it’s no longer made and to buy it on eBay was going to cost an arm and a leg. Last week I decided to try a different route. I posted a picture of the toy and a little bit about Courtney on my town’s Facebook page and asked if anyone had it and was willing to sell it for less than my arm and leg, I received so many responses! I was truly moved. But one women responded that she had the complete working set and it was mine for free. She said she was just happy to hear it was going to a loving family. I found out later this women is a special needs sibling so truly knew how special this meant to us.

Courtney’s reaction to the toy is exactly what I thought it would be…pure excitement!

Alyssa comes up to me and says, “Mom, I want to play animals with Courtney. Can you show me how to say, ‘want to play animals’ on her talker?” Holding back my tears of joy, I quickly found the talker and showed Alyssa how to say “play animals”. Alyssa tried it and then went to Courtney and asked “play animals” using the talker. Beautiful doesn’t even come close to explaining how this moment felt.

We are working so hard at fostering their relationship because it has gotten to the point where they can’t tolerate being in the same room a good portion of the day. So the fact that Alyssa wanted to attempt this with Courtney was exciting but then to add that she wanted to communicate with her the way Courtney communicates best.

Unfortunately the moment ended quickly because Courtney didn’t want to which broke my heart for Alyssa. I made sure Alyssa knew how proud I was of her for asking her. Excuse me while I go cry!

So many goals being worked on in this picture that was taking during a Telehealth session with her speech therapist…

1. Increasing word utterances on her talker.
2. Eating a substantial meal instead of just snack foods.
3. Eating at the counter in the kitchen instead of other places in the house.
4. Eating at a designated mealtime.
5. Tolerating being in the same room as Alyssa (and Alyssa tolerating being in the same room as Courtney).
6. Eating a meal without her iPad (iPad in picture is her therapist on zoom).

There was no aggression and no tears. Only smiles by all!

Courtney has found a special activity she likes to do with her dad. She sits with him and uses her talker to request animals for him to look up on his phone. It is the cutest thing! I love that they have this special thing to do together!