What does it mean to be a sibling of a child with special needs? For Alyssa, it means being carted around since she was 2 weeks old from one therapy to the next. It means taking naps in the car because a therapy session is during nap time. It means being your sister’s comfort item because she loves the way baby’s hands feel. It means being bit, hit and pinched. It means having to learn how to be the big sister even though you are the little sister.

Alyssa may give us a run for our money as she is embracing the terrible twos (and does a fine job demanding our attention) but she also is one awesome sister. I don’t know what she understands about Courtney. She knows sometimes Courtney doesn’t come to Mom when asked so she will go get Courtney for me. She knows that Courtney uses a talker “her words” to talk. It’s also evident that she loves her big sister unconditionally.

So today is all about the awesome little sister. Today, instead of being carted to therapy, Alyssa is going with her mommy and daddy to Disney on Ice. It’s a princess day for our little princess.

I actually struggled at first that we weren’t taking Courtney. The main reason why we aren’t taking Courtney is because it is not realistic at all to expect her to stay in one place for that long. As much as I knew it would be hard on Courtney and that she won’t know the difference, I felt horrible for not including her on this adventure. When sharing these feelings with one of my sisters, I was reminded that first, families do this all the time. Families of children of the opposite sex will do different things with their kids. I was also reminded that Alyssa needs this special time with us. It’s something we will have to make time for regularly. So..,today is all about our princess! I can’t wait to see her reaction!

Thanks to Facebook, January 19th will alway hold a bittersweet memory. On Facebook, there is a way to look at what you posted on that day in previous year. Sometimes it even just appears on your news feed. As I’m sure many have experienced, sometimes it brings up good memories, sometimes sad and some just bittersweet. Today, January 19th, a post from 3 years showed up on my newsfeed. A very bittersweet post. I posted this adorable video of Courtney standing at the top of our little slide in our basement first saying “cheese” and then singing “Let it Go” at the top of her lungs. If you remember, it was 3 years ago that you could find countless videos of little girls singing Let it Go. There were also countless parodies. So when I took this video, I of course thought it was better than all the rest. What I didn’t know when I took that video is that I was capturing something that I now I wonder if I will ever see again. Something that she no longer can do. So this morning, when this video appeared on my news feed, I had so many feelings. I was grateful that I have this sweet little video. Sad that I don’t see this any more and question if I ever will and mad that she can’t do this anymore. So when I see this video, I do smile with tears in my eyes. I hope some day I hear her something similar to this again but in case I don’t, I will forever hold dear to my heart.

So here is my sweet little Courtney singing her heart out. Best you’ve ever seen, right?

I wish I took a picture at the training today. It would have been picture proof that it truly takes a village to raise a child, especially when it comes to one with special needs. I sat in a room today with 16 other people, all of whom work with Courtney in some way or another whether at home or School. 16! And 2 therapists were missing! It was almost surreal to see. Put all my frustrations aside with School, it really meant a lot to me that everyone took the time to be a part of the training.

Another part of our village today was my awesome younger brother and his little side kick. To make it so all therapists AND caregivers could attend, I had to call in reinforcements to watch the girls and he came to my rescue! Thank you, Kev, you rock! Looks like fun was had too!

Today is the day we get trained on Courtney’s new talker. Today is the last day of her old talker. No big deal, right? But it is a big deal! After Today, I’m taking Courtney’s ability to speak away. After today, I’m handing her a new language and have to teach her again how to talk. Fortunately she already knows the function of language this time but still, it’s kinda a big deal. Wish us luck!

Break out the drums, sound the trumpets, I’m ready to celebrate!

So as you know, a couple weeks ago Courtney ate cauliflower at a restaurant that we go to regularly. We were excited last week because she ate it again along with tried a lost item from her list, broccoli. Love when we try things for a first time, but when she eats it for a second time it’s even more exciting!

Now for why I’m celebrating today. We were all around the counter as Savannah (our nanny) was cutting vegetables for the pizza she was making. Courtney was fascinated by the tomato but then at some point she used her talker to request a strawberry. As of recent, she’s been enjoying taking a strawberry and rubbing it on her lips. Tonight we got her to take a bite! Not just one bite though! She ate several!

The excitement doesn’t stop there. Back to the broccoli and cauliflower. Courtney can be very brand specific. Only eats the pizza I make, only likes one type of butter, one brand of yogurt and so on. This week I bought cauliflower and broccoli to try with her at home. I was guessing she wouldn’t eat it. Tonight I made it for her and she ate it!!!! I cried as I took pictures so I can share the excitement with her feeding therapist. We were all so ecstatic!

It’s been just over a year since we embraced the journey of Assistive Technology with Courtney and I feel like she is finally starting to own it. Meaning she is now starting to understand that she needs her talker to get her needs met. She is starting to independently carry it from one room to the next with out us telling her to bring it. She’s using it to request her favorite foods, toys and even some actions. She is even starting to use to to label items and colors! Today I watched her use her talker to ask her nanny to scratch her arm. I wanted to cry. Courtney can talk! Is it the way you and I talk? No, but that doesn’t matter one bit. She has words!

As much progress as she has made, she is still a long way from being proficient. Actually, we are throwing a curve ball at her. Even though she has made progress, her private speech therapist feels the communication system we are using may not be appropriate for her. He sees the progress but feels she could make more progress with another system. So in 2 weeks we are introducing a new system to Courtney. I’m very nervous.

I’ve mentioned before that learning how to use a talker is like learning a different language. And each type of talker is almost like it’s own different language. Courtney knows how to ask for milk but now will have to learn a different way to ask. These coming weeks may be very hard and confusing on her. Fortunately I already know this knew system!

This is an ABC chart. ABC stands for antecedent, behavior, and consequence. Basically it’s filled when you are trying to determine when and why a certain behavior is occurring. It can be used to chart ANY behavior. Want to know why you bite your nails, use one of these charts! I have filled out many of these at school. I’ve mostly use them to determine why a child is engaging in aggressive behaviors.

Well now I’m filling out one for Courtney. Her therapists are helping us figure out why we are seeing so much aggression. Courtney has been a biter and a scratcher for a while now but it wasn’t something you saw frequently. As of recent, it has increased in both frequency and intensity. Though not every child with autism is aggressive, it is common. Typically you will find it’s because of the inability to communicate. That’s where one of these charts help. You may find out that you are actually rewarding the child when they are exhibiting a behavior. For example, today Courtney went to bite me. I went to calm her down and realized that on her talker it said “eat fruit pouch”. She requested something and I didn’t hear her so she got mad. I gave her the fruit pouch. Well now I taught her that if She asks and we don’t hear then bite us and She will get it. Now that I’ve looked closely at this situation, I know we have to teach her persistence in her requesting.

These charts can be very telling. I hope it’s the case for us. I hope we can come to a better understanding why she has become more aggressive and determine a way to help decrease it. I hate having to warn those we spend time with that Courtney can be aggressive. I hate having to block bites, I hate having to watch her like a hawk when she comes near another child including her own sister because what it that’s the moment that she decides she’s frustrated about something. What I am happy about is that we have an amazing team of therapists that works closely with us at home and will help us.

I’m adding to my previous post. We’ve had a couple different viruses go through our house. These viruses have cut Courtney’s list of foods that she eats in half. She basically eats 11 things and that’s being generous!

This pickiness has lead her to have some pretty significant constipation issues. We were actually at the GI doctor today and she was saying how at Courtney’s next appointment she will give us suggestions on how to add more fiber to her diet. Of course we have to look at supplements because her getting it through food isn’t going to happen.

This is Autism.

For every parent of multiple children, watching your children play with each other is always so beautiful to see. For parents of a child with Autism, a disorder that really impacts a child’s ability to be social, those moments can either be so quick or not happen much at all. Courtney and Alyssa have found an activity that they both like to do and you will get some cute interactions during. They love rough housing on our couch. In our house, jumping on the couch is welcomed. They will start jumping, running and giggling. Then they start tickling (aka…grabbing each other). It is absolutely adorable. They are truly interacting with each other.

Last night the beauty of this moment was brought to another level. Courtney has a speech therapist that comes to our house once a week to work on her learning how to use her communication device. It very play based. The therapist usually follows her lead. If there is something she is enjoying doing, we work on her requesting more of that activity. The session first started with her running around with her Elsa doll. Joe would take a turn with it and then she would have to use her talker to say, “play Elsa” to get it back. After a few times she was able to do it on her own. The video I’m sharing, you will see her pressing the buttons to say “play Elsa”. (Side note…for some reason the talker didn’t speak when she pressed Elsa, but she did press it). Then Alyssa joined in on the running around which lead them to their rough house play. We then showed Courtney how to say “get Alyssa”. After modeling it some, she was able to do it pretty independently. It was so beautiful to see Courtney not only play with her sister but also say her sister’s name in her mode of communication. I was all smiles and you can see the joy in the therapists face too. Truly a priceless moment!