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.
I was Lying in bed in between both my girls. Both woke up super early so I was letting them enjoy some screen time while I enjoyed a few more minutes of relaxing. Out of nowhere Courtney moaned and then slapped me in the face. I went to rub her hand to calm her and she bit my arm. She got me to the point where it hurt so bad I cried. Calmed her down and I calmed down but then a few minutes later she was agitated again. This time I was prepared so was able to stay clear of any attempts she made to bite, scratch, pinch or hit me. Joe took Alyssa, I calmed Courtney and then I cried some more. This is Autism.
We were all down in the basement. I was on the treadmill and joe was playing with the girls. Courtney got agitated because she was ready to go upstairs. From the treadmill I watched Joe calmly avoid her attempts to bite her while trying to calm her down. He has come so far. A guy who only knew the word, Autism but now raising a child with Autism. As hard as it is to see her get so agitated, it was beautiful to watch him. This is Autism.
While on the treadmill, I observed Alyssa exploring her world just as a typical 2 year old would. She was talking away telling stories that I could only understand half of. At one point I needed a tissue so Joe went and got me one. The next time I needed one, Alyssa said, “I get it mommy” and ran to the bathroom to get me a tissue. I know, seems so simple but it’s little moments like this that show me Alyssa is developing just fine. Autism parents watch their other children like hawks making sure they don’t see any of the same characteristics. This is Autism.
My sister and my niece were watching the girls while Joe and I went out to dinner. A couple days ago I watched my high school age niece bond some with Courtney so I was really excited for them to spend more time together. Sure enough I get a picture from my sister where Courtney was climbing all over her cousin. Made me smile. We then got home from our dinner to find both girls cuddled up with their older cousin watching a Disney movie. This is not Courtney and it was so beautiful to see. My sister told me how Courtney was actually sitting next to her but got agitated and was starting to go after her. She then put Courtney next to my niece and she calmed down. She wanted to be by her cousin. SO COOL! Later on my sister and I exchanged the following texts…
This is Autism. It’s beautiful, it’s frustrating, it’s sad, it’s rewarding. I wouldn’t trade it for the world.
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!
Courtney was given this beautiful book, “Happy Dreamer”, from a friend of mine. She told me she read it and immediately thought of my little dreamer and had to give her a copy. I was so touched by this generous gift. Here, a friend who has never met Courtney, but follows my family’s journey, saw how this book so beautifully describes my little girl and shared it with us. I had not heard of this book but as soon as I read it, I saw what my friend saw. It describes Courtney and so many like her. It also gave me a different way to look at Courtney’s awesome personality. There is something so pure about her personality. It truly is an example of what you see is what you get. She doesn’t try to be some body else, she is her and always her.
Courtney, never stop dreaming. I love your big dreams, your little dreams, your messy dreams, loud dreams, your quiet dreams and all your other happy dreams. Keep them happy and keep being you.
To my friend who gave this book to her, I thank you from the bottom of my heart. I will forever cherish it and hope to some day share it with another mom who also has a happy dreamer. Love ya!
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.
Autism: A Little Wild 