I was watching a movie tonight while lying next to Courtney. It was about a father and his son with Autism. Parts of the movie made me really emotional. Watching the struggles that this father went through with his son were just a little too close to home. The movie got me thinking what the future would look like with Courtney. Because of the movie, my brain let me put a negative twist on what Courtney’s future could look like. Will she verbally communicate? Will she be bullied? Will she be able to work up to grade level in any subject? Will I ever not have to worry that she will be aggressive towards someone? Will she attend college? Will she marry? Will she be able to live independently? I know some of these questions are questions everyone probably asks themselves about their little children, but when I think of these questions, the first thing that comes out of my mouth is no to all of them. I watch a movie like the one I just watched and that is how I see my future. This father had a continuous fight with his son’s school on placement. There were scenes that broke my heart as someone bullied the child at school. They couldn’t go out in public without the fear of the child running away. I watched the boy regress when moved to a therapeutic day school that ended up being the wrong fit. So when I watch a movie like, “A Boy Named Po”, I feel like I am looking at a crystal ball. A movie like this one gives me a quick glance of what life may look like when Courtney gets older. I know….stop watching movies like this. I’ve always been a sucker for the movies that pull at your heart strings!

The movie probably tugged at my heart strings more because of the timing. This week we have Courtney’s parent/teacher conference. Also this week our advocate observed Courtney in her classroom. I also heard recently some rumors of a direction her district may be headed to when it comes to educating student’s with special needs (because of it being rumors, I’m not going to go into details about it).

I’ll let myself start stressing about the future at times. Who doesn’t? But then I stop myself and remind myself that all I can worry about is the here and now. Right now, I have a very happy and healthy little girl who has a contagious laugh, energy that the energizer bunny couldn’t even keep up with and an amazing home team of people that will do anything to help Courtney progress.

A few people have asked me how things are going with the new talker. Well…FANTASTIC!!!! She handled this transition better than I can even imagine! I had so many reservations on if we were doing the right thing by switching. As much as the data was showing me she was struggling with the other system, I wasn’t convinced it was going to be any easier with the new system. I spent more hours stressing and discussing on whether or not we should switch then it took her to learn the new system. Such a proud mom!

Tonight, the talker died though. You can equate this to you getting a horrible case of laryngitis and not being able to talk. Courtney lost her voice tonight. I actually found this harder then the switch in systems! We had to completely resort back to guessing or having her gesture. So hoping they can fix it quickly!

It was last year at this time that Joe and I met with Courtney’s teacher for Parent/Teacher conferences. For the most part, I can’t remember what all was discussed at this meeting. What I do remember though, is discussing what they were projecting her placement would be for this school year. Being a teacher, I knew then that you do have to be careful talking about a topic like that without it being an actual IEP and I also knew that their projection was just that, a projection. It was at that meeting that we were told Courtney was projected to be in the 5 hour structured learning class.

One of the many differences between Parent/Teacher Conferences and an IEP meeting is that an IEP meeting is driven by the legal document. Because there is a legal document being made, notes are taken. At Parent/Teacher conferences, notes are typically not taken. So at Courtney’s IEP meeting that was a held a few months later when the curve ball of a different placement was thrown at us, I was so wishing I had notes from the Parent/Teacher conference. Chances are, it wouldn’t have made a difference. Chances are everything would have continued as it has.

Parent/Teacher conferences are approaching again and for some reason I have made myself sick to my stomach over them. I can’t help but relive last years conferences and IEP meeting. I immediately decided that I wanted to make sure notes were taken at these conferences just in case something came up that I would want to refer back to. I was hoping it would be as simple as just asking them for someone to take notes but it appears I was wrong.

I really struggle with being “that parent”. I went into her first school year hoping I wouldn’t be “that parent”. But here I am…I’m “that parent”. The parent that would make me sick to my stomach if she was one of my student’s parents. That parent that no matter what you do you feel you can’t make them happy. I don’t want to be “that parent”. But, I do want to be Courtney’s voice. I want to make sure that she is getting everything she deserves. I want to make sure that nothing gets in the way. I want to make sure that nothing slips by me because I let my guard down. If only I could find that in between. I want to be the parent who fights to get her daughter everything she needs but still not looked at as “that parent”. 

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.