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.

Courtney’s use and understanding of language continues to blossom in so many ways. As I have shared, recently see started using two word requests on her talker, such as “want milk” or “want iPad”. She’s even done a 3 word request!

We are also starting to see her use her talker independently in other ways besides asking for items that she wants. She’s using it more to tell us she needs a break from something that is hard or she doesn’t want to do. She’s using it to tell us when she is all done with something. My favorite text came from her BCBA to tell me that she was virtually observing a therapy session of hers. The BCBA was on her therapist”s iPad. Courtney wanted to play on her therapist’s iPad so she used her talker to say, “all done, goodbye”. She wanted the BCBA off zoom so she can play on that iPad. Yes, she logged off immediately!

Both her home team and school team have been working very hard for a while now on her identifying feelings, specifically her own. They are trying to teach Courtney that instead of showing us she’s mad by ring aggressive towards people, she can tell us she’s mad or frustrated. Today we got a pretty cool sign that all the hard work is paying off! A therapist was working with her. Courtney was enjoying a break and playing with this teddy bear puzzle we have. It has different teddy bears with the faces showing different feelings. Courtney was playing with two of the heads and was verbally saying something over and over. Her therapist couldn’t understand her so promoted her to use her talker. Courtney touched “mad” and “sad”. Look at the bears faces! They are most definitely “mad” and “sad”! I wasn’t there for this awesome moment but of course the therapist sent me a text immediately so I can celebrate! I couldn’t be more proud!

I got home from work tonight and was quickly throwing some leftovers together for dinner since Courtney and I had a tele-therapy session. Alyssa came up to me with a serious look on her face and said, “mommy, I’m afraid nobody loves me”. Sadden by this comment I quick reassured her that she is very loved but I did ask her why she felt this way. Without needing time to think she replied, “because Savannah (nanny) has to help Courtney with school and can’t play with me”. Now completely heartbroken, I reminded her that Savannah loves her very much. I also reminded her that Savannah also helps her with school. Alyssa then reminded me that sometimes they have school (zoom) at the same time and she has to do it herself and Savannah also has to keep taking Courtney off things she’s climbing.

I fully realize that little kids at this age can say the darnedest things but there is so much truth behind her statement. Savannah does have to spend the majority of the day helping Courtney with school. Courtney is unable to attend zooms or complete school without full assistance. Well most preschoolers Alyssa had My dad and I were talking the other day about how young kids with loved ones with special

I mentioned in a previous post that Alyssa recently started seeing a psychologist. The emotions and behaviors that come along with being a sibling of a child with autism is definitely a major focus. These sessions are via zoom and they include me. Alyssa looks forward to these sessions as she also knows it’s an hour of uninterrupted mommy time. We are working at finding more uninterrupted mommy time but definitely a work in progress.

Oh Alyssa, know you are loved so much by so many. You light up every room you enter. You are truly a special little girl.

Over this Thanksgiving break, Alyssa was extra attached to me so it required Joe to be on “Courtney duty” more since she basically always needs someone watching her.their time together basically became joe being a human jungle gym. The giggles I would hear coming from whatever room they were in just made me smile. Then with the extreme giggles, you would then hear Joe shout, “no biting”, “ouch, that hurt”, “no scratching”. For Courtney, the extreme giggles can be just as aggressive as her extreme angry times. She gets so overstimulated by her giggles that she just starts biting and pinching. You can tell that it frustrated joe that these fun moments would turn into his face being scratched but he sure enjoys making her so happy.

My family did a “what I’m thankful for” zoom. Each of us shared 3 things we were grateful for. There was one rule, which I actually didn’t follow, you couldn’t say family. So today on Thanksgiving, I figured I would share here what my 3 things were.

1. Here’s where I didn’t follow the rules. I’m thankful for Courtney and Alyssa. Actually, I think what I meant to say is I’m thankful to be here with Courtney and Alyssa. Not a day goes by where I don’t realize the miracle of me still being here with them because 5 years ago that opportunity was almost taken away from my family. For that, I am thankful.

2. Communication Devices. I am so thankful for communication devices. Though Courtney has words, they can be hard to understand and she pretty much never uses her voice to communicate her wants and needs. Thanks to communication devices, Courtney is able to tell us what she wants at any give time. For a mom and a teacher of children who are non-verbal, it’s an amazing thing! for that I am thankful!

3. Team Cranston. I couldn’t be more thankful for all the people who help keep my family moving forward. This is a large team. It’s a team of caregivers, loved ones, friends, teachers, therapists and babysitters. Without each and everyone of these people, I’m pretty sure my family wouldn’t be where we are today. During these crazy and uncertain times we have needed to lean on Team Cranston more than ever and have had to find creative ways to do that. Covid 19 has not stopped this this family from thriving and staying happy in the process. There have been some big bumps and bruises along the way, but Team Cranston has been there to help support and love us each and every step. For that, I am beyond thankful for.

Thanksgiving is very different this year. I’ve struggled with it some too. But then I realized what is important. My family is happy and healthy and honestly, that’s all that matters. Happy Thanksgiving everyone!

Courtney has been using a device since she was 3. She quickly learned how to use it to request her favorite items such as food and specific toys. After a while she learned how to label colors and other items.

We’ve been stuck at one word phrases for the most part this whole time. We’ve been working on using 2-3 word phrases for a while now. Now and then we would see some increase in this but for the most part Courtney just uses one word phrases to communicate with us with her talker.

As of recent, she is more spontaneous with using two word requests! Meaning instead of just saying “milk” with her talker, she is now saying “want milk”. We are only seeing it with the carrier phrase “want” but baby steps!!! So proud, Courtney!!!