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!

I’ve been teaching children with autism over 10 years. Over those years, I have had students who bite, pinch, scratch, hit, kick and do on. Enough times that I can almost say it doesn’t phase me anymore. Most of the time, they weren’t doing it to be mean. Most of the time, it was them needing to communicate how they were feeling and the only way they could do it was by lashing out. It breaks my heart that they can only express their feelings that way. It’s why this job is just as emotionally draining as physically draining. But at the end of all those rough school days, I was able to go home and most days put it behind me. Though I sometimes couldn’t help but think how hard it must be for the parents.

I can still go home and put it behind me most of the days, but now I am going home to possibly see the same behaviors. Courtney does have some aggressive behaviors. For the most part, it’s only the therapists, teachers, caregivers and parents who actually see the behaviors because it’s when she’s frustrated over the demands being put on her. You can usually predict when she will bite or scratch so typically she is unsuccessful, but sometimes she catches you off guard. Usually it’s just a quick attempt to bite or actual bite and then she moves on. During the last two weeks or so, there have been a few instances where I have seen a more aggressive side of Courtney. It has only happened a few times and in each case it has been with me. In each case it also happened at bedtime. I hate to describe it this way, but I feel it describes the moment well. It’s like suddenly a wild animal is unleashed. All of a sudden she gets this look in her eyes, she starts crying and screaming and the only way she can truly communicate how she is feeling is to attack with her hands and mouth whatever she comes in contact with, whether it be me, a pillow, the couch or even herself. I try to get near her to comfort her and she goes after me. If I step back and wait it out, I watch her try to bite herself or throw her body around in risk of getting hurt.

Last night she woke up after being asleep for an hour or so crying. When I brought her to my room, that wild animal was unleashed. I tried to comfort her, I tried to assess if something was wrong, I tried to give her space but nothing helped. I was finally able to bear hug her from behind (aka; restrain her) in hopes that it would just calm her. Once she seemed as if she was starting to calm downI let her go and just let her cry herself to sleep. Yes, I cried too. It is so hard to watch your child that frustrated and unable to really do anything to help them.

I feel the need to say that I do not blog for sympathy. I don’t want people to feel sorry for me or my family. I am not sorry at all that I was chosen to be Courtney’s mom. I wouldn’t trade it for the world. Blogging is my therapy, blogging is my way to make sure I never forget the good, the bad and the ugly parts of this journey. I also blog to hopefully share with other families that they are not in this alone and I blog to spread awareness. I hesitated sharing this ugly side. The last thing I want is people to be afraid to set Courtney off. She is a beautiful soul and honestly a sweet little girl. But even the sweetest little angels can have an ugly side when they have no way to communicate.

If you have followed our journey you know the struggles we’ve had with getting Courtney to fall asleep at night. I worked hard at sticking to a routine, I’ve tried weighted blankets, Lycra, sound machines, music, rocking, cuddling, even car rides…everything! When it was really bad (back when she was napping), it took over 2 hours. Once we took naps away, I was able to get it down to an hour. Once School and therapy started I would have the occasional half hour. Recently, Courtney has been hard to even get her in her room at bedtime. To avoid any aggressive behaviors I gave in a few times and let her lay on the couch but I would try again the next night. Well, For 4 days in a row now, we’ve let Courtney lay on the couch and she has fallen asleep within 20 minutes! Once asleep, we bring her to her bed. We will see how long this lasts, but if that’s what it takes to get her to fall asleep, then that’s what we will do.

Since Courtney officially received the diagnosis of Autism I wondered how I would educate those close to her, especially her cousins who are on the younger side but probably the closest to her. Not knowing how to approach it, I decided I would leave it up to the parents for now.

It has become apparent at family gatherings on both sides of the family that it has been talked about with the cousins. They are all great with her! Unfortunately some have already been on the receiving end of her aggressive behaviors. When this has happened I’ve seen her cousins try to carefully tell their parents without me knowing that Courtney bit or scratched them. Breaks my heart that they have to experience that but so grateful they also have some understanding.

It is so cool to watch some of them explore her talker. I let them explore it because I want them to think it’s cool and I want them to learn how to communicate with her.

While celebrating Thanksgiving with one side of the family, one family member shared with me that Courtney’s cousin wrote about her at school. She shared his writing with me. I had to hold back my tears as I read about how he wants to help autistic children like his cousin when he grows up. How beautiful! And I can see him actually sticking to that! He is so good with Courtney. He spent the whole gathering making sure she had her talker with her. It is so cool to see her already inspiring others.Oh Courtney, you are so loved by many!

Today when Courtney threw up for the 3rd day in a row, I had to take a deep breath and mentally remind myself that this didn’t have to ruin Thanksgiving. I told myself that we can make our Thanksgiving plans work even with a sick child. It’s been a weird virus. She has thrown up every morning the past couple days and the rest of the day you see these moments of her starting to feel better. So I figured if today were to go like the past couple days, she would be just fine during our Thanksgiving dinner at Coopers Hawk with Joe’s parents.

The day continued like the past couple days so we decided to still go out for dinner. Packed a bag full of her favorite foods, even though she hasn’t really been eating. Brought her iPad and her talker. I was preparing for the worst but hoping for the best.

Courtney for the most part uses her talker just to request her favorite food items and toys. Her therapists, both at school and at home, have also been working on her requesting when she needs a break. Usually she only does it after you have modeled it on her talker and are specifically working on her requesting it. I have never seen her really request it outside of therapy when she truly needed a break.

So tonight at dinner, she quickly got overwhelmed by the crowd and the noise at the restaurant. She kept grabbing my hand, trying to get out of the high chair and started whining. I tried to remain calm but all I could think of is this isn’t going to work tonight. We didn’t even make it to ordering our food and she already wants to go. Suddenly she reached for her talker and pressed “need to take a break”. Joe and I looked at each other both starting to form tears in our eyes. Our non-verbal child was just able to tell us she needed a break! The most beautiful words every! So what did I do? I immediately got her out of the high chair and I took her for a walk around the restaurant. I walked her around with tears in my eyes wanting to call every person that has been a part of her journey to let them know all their hard work and effort is paying off. I wanted to tell them on this Thanksgiving day how grateful I am for them. They have helped give my little girl a voice. For that, I am truly thankful!

…and yes, we were able to make it through dinner. We had a wonderful Thanksgiving after all!