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!

Don’t mind me as I cry while I watch two sisters play together. Not rough house, not a 1 sided game of chase. Playing dolls together!

Courtney sat down by Alyssa’s dolls while Alyssa was across the room. As soon as Alyssa saw this she did what she usually does. Scream, “Courtney, NO!” Though it frustrates me that she shoos her away anytime she gets near her toys I get it. Alyssa’s toys are chewed on, broken, torn by Courtney. Nothing is safe.

This time I told Alyssa she should go teach Courtney how to play with her toys. Well…it turned into this beautiful moment of two sisters playing. The most beautiful part of all was watching the smiles on both of their faces as they enjoyed this moment together.

I have been sharing a lot of posts recently on the progress Courtney has been making with her talker. I decided it was time for me to share a video of her in action. In this video her and I are doing a telatherapy session with her AAC therapist. On the screen was a repetitive story. We’ve been using some repetitive stories to work on increasing her word utterances on her talker to 3 words. She’s been able to find most food items on her talker for a while now but the words, “I” and “like” are newer for her. The therapist reads the sentence on the page and then she is suppose to repeat it using her talker. The first couple pages (not shown on the video) I modeled what we expected out of her and so she can see the motor plan to find the words on her device. By the 3rd or 4th page she figured it out! This video is actually the second time reading through the story.

The video may feel like a long 3 minutes of because the processing she had to do for each page. I feel this video also gives a good look at how the symptoms of Autism can really get in the way of everything she does. Her little brain during this task was also focused on something else. When she’s doing some of these behaviors, we are pretty sure her head is in some video she enjoys watching. Yet she was also still completing the task but she was very much distracted by so many other things so had to really work to still complete the activity. The video also shows how much wait time she needs when asked a question. It is so hard to not just jump in and prompt her. You’ll even see how sometimes I probably do prompt her too soon. Most of all this video shows just how awesome my little girl is and how hard she is working to learn how to communicate.

Having a non-verbal child is extremely difficult. Even as she learns to communicate, we are still at the point where I find myself saying daily, “I wish you could just tell me… what you want, what’s wrong, how I can help you…I love you”. Watching her work so hard so that someday can tell me all those things is the most beautiful thing in the world.

Three years ago today, a team of teachers, para-professionals, school therapists, home therapists and caregivers gathered together in a conference room at Courtney’s pre-school. We met to learn about a new communication system for Courtney since the one we were using at the time wasn’t cutting it for her. That day was the perfect example of how it truly takes a village to raise a child.

Three years later, the village has changed some but it still remains large and supportive. The world has been turned upside down and as an autism family we definitely are just holding on by a thread.

As much as Courtney is struggling right now, there is one thing that is flourishing. That communication system we introduced 3 years ago today has truly become Courtney’s voice and witnessing it has been beautiful!

Today’s moments tops the cake! Today she used her talker to say, “want dad” while he was not home. Then tonight, for the first time ever, she verbally requested a hug from me! I gave her the biggest hug ever!

I was feeling defeated this week. The storm has felt strong. But as they say, when it storms, look for the rainbow. Well the rainbow appeared bright for us today to remind me that we will get through this.

Her anxiety is at an all time high which is causing aggression to be at an all time high. Other behaviors are popping up leaving us wondering if we will ever rebound from this difficult time.

I’m feeling defeated. Defeated by zoom. Defeated by Covid. Defeated by schedule changes. Defeated by anxiety. Defeated by the aggression. Just defeated.

But we will keep pushing on. We will keep finding new ways to help her. We will keep fighting for her. We’ve gotten through tough times before, we can get through this too.

Courtney continues to make some pretty cool strides with her talker. The most recent one is such a functional one. Though it gives me a bitter sweet feeling.

We have had a few occasions now where Courtney has spontaneously used her talker to tell us she needs her diaper changed! Talk about using to meet your basic needs! How huge!

As I said though this is kinda bitter sweet. Yes, my 7 year old is still fully dependent on diapers. We have tried several times to potty train her but any time we move a step forward with it we end up running into a wall that takes us multiple steps back. It’s been one thing after another. You would think this new skill would mean she’s ready but we are currently dealing with her being VERY anxious and fearful about bathrooms in general. it is not easy to potty train when you won’t go near a potty.

I early on prepared myself that potty training could be a very long and difficult road with Courtney. So many people tell me she will when she’s ready. It’s so different when it comes to children with such severe needs. Who knows if she will ever be ready. In the meantime I will celebrate this little step!