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!

It’s not your typical bond. It’s a bond that will have many ups and downs. A bond that will be tested. It’s a bond that as the mother I will have to give it some tender loving care to help nurture and support it. It’s a different bond but nonetheless I’ve come to see how very special this bond already is.

2020 definitely has been hard on this bond but in ways has helped it grow. Alyssa has become more sensitive to Courtney’s loud noises and as grown afraid of her aggressive behaviors. She has verbalized her concerns of being loved since we have to spend so much time helping Courtney.

As hard as that has all been, we’ve also watched Alyssa come to understand that though she is younger she is very much the “big” sister in this relationship. Watching this has been beautiful. She is just 5 years old but forced at times to be more mature and responsible than your typical 5 year old. She is a rock star.

It’s not the bond I imagined when hoping to have 2 girls but it’s a bond I couldn’t be more proud of.

Our therapists become like family. Especially when there is one therapist that has been working with our family once a week since she was 2. We’ve been with Courtney’s feeding/speech therapist for 5 years! Courtney has been back to the therapy clinic for a while now after it was closed for in person back in March but the clinic is still doing feeding therapy via telehealth being that masks can’t be worn while eating. Her feeding therapist decided to take a 1 session break from feeding so she can see her in person. Again, she’s like family so seeing her in person after 9 months was awesome. We greeted her with smiling eyes and air hugs!

A shout out to BDI and all the therapists there. We can’t thank them enough for all they have done during this time to keep therapy going while also keeping the children safe and healthy. They are amazing! Especially our 3 therapist!

Another part of teaching a child that is non-verbal the power of their “talker” or “words” (both words we use to refer to Courtney’s device) is teaching them to make sure they have the device with them at all times. We have the luxury of always having our voice with us but that’s not the case for Courtney. Imagine being somewhere and your voice not being with you. Suddenly you have no ability to communicate.

Time for me to be honest…I was definitely bad at working on this with Courtney. She is always on the go and is fast. Making sure she had her talker with her was always the last thing on my mind.

After years of her team being consistent with this, and Courtney learning how powerful her talker is, she is starting to bring her device around with her. When her talker is not with her, we are starting to see her then search for it when there is something she needs. This morning we had a first. Usually we have to get her talker from the charger and give it to her first thing in the morning. Today she went to where we charge it, ripped it out of the wall and brought it to the family room where she then asked for her “milk”.

I continue to be overwhelmed with joy as I watch my beautiful little 7 year old slowly but surely find a way to communicate with us. I couldn’t ask for a better Christmas present.

I will never forget the fall of 2018. It was when Courtney went through a horrible period of UTI’s and severe constipation that causes bowel spasms. It was 3 months of daily episodes of her screaming in utter pain that would cause her to bite her arms and legs. It was multiple phone calls a week from school asking us to pick her up because she was inconsolable. It was dr appoint after dr appointment. It was an awful period in this journey that seriously left me with PTSD.

Last Friday I got home from work and while I was unloading my stuff from the car, I could hear inside Courtney crying in complete terror. I immediately dropped everything and ran inside only to be greeted by Courtney grabbing herself as she was in pain and completely inconsolable. And that’s when the PTSD clicked in.

We’ve had occasional episodes since 2 years ago but what was different last Friday is it was the second time in a week. I tried not to let it worry me but I was now on high alert.

A week has past and we have had at least one episode every day. Each episode my anxiety has heightened. With each episode I have to work at not thinking about the awfulness of two years ago. We’ve ruled out the UTI and are now working on the constipation. This time there are other factors to consider that I can’t help but wonder if it’s something else. It will be my mission to not let this last 3 months again. It just simply can’t. Cross your fingers for a quicker turn around!

Having a child who is non-verbal brings many difficulties. Thanks to technology, there are ways to give children like Courtney a “voice”. But helping them learn this “voice” is equivalent to climbing the highest mountain. It requires families to basically learn a new language while also trying to teach their child this new language. It is a very long and slow process.

Courtney got her talker when she was 3 years old. She had a slight advantage being that I already had some knowledge of her device. I wish it meant she would pick up on it faster but it didn’t.

Needless to say this recent surge in understanding of language and using her talker to communicate has been beyond awesome. Watching her find the power of her talker is beautiful! Loved ones always talk about how all they want is Courtney to talk. All I’ve wanted (besides the 3 words, “I love you”) is Courtney to be able to communicate with me beyond telling me what food item she wants. For the first time in 7 years, I finally feel like we will get there.

We had another beautiful moment of her showing these massive steps she’s taking this morning. Courtney wanted a specific YouTube video on her iPad. She kept handing the iPad to her dad which usually means “hear dad, telepathically figure out what video I want because I can’t tell you”. She was very persistent but all he could do is type in some of the favorites we know of hers. She kept handing the iPad back though. Finally she took her talker and started naming different sea animals. This still involves a guessing game but now we were able to narrow it down more. I finally remembered that she’s been watching this kids show, Octonauts that has all sorts of sea creatures in it. Again, the frustration of having a child who is non-verbal because we are still guessing. Joe started searching Octonaut videos that included all the different sea creatures she named on her talker. Finally he says to me, “we found it! And sure enough, all the ones she listed are in it!”

I’m so excited to watch her see the power her talker has. It is so beautiful to watch her find the words she wants on it as she tries to communicate her wants and needs. We are still so early on in this journey with her talker though we are 4 years into it but seeing these huge steps gives me so much joy and hope.