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!

The girls and I were driving to church this morning when suddenly I was hit by a wave of emotions. We were sitting at a stop light and I had glanced back and got a look at Courtney’s beautiful eyes. Two years ago at 4 a.m. on November 6th, I came so close to never being able to look in those beautiful eyes ever again. So close to never seeing Alyssa’s contagious smile. I was not prepared for that wave emotions. I’m sure these emotions will probably pop up every year. I struggled for a few hours. Today was All Saints Day at church. The day where we honor the saints in our lives that have passed away. Members of the congregation light a candle for those saints in their lives. It was so hard not to think that a candle was almost lit for me. I finally decided at that moment to do something about it. I got up and lit a candle for all the mother’s who died from Amniotic Fluid Embolisms while giving birth. After I lit that candle I was able to say, “I’m glad to be alive”.

Boy am I glad to be alive. I got to witness the first 2 years of this little whipper snapper. This little girl brings such joy to our lives. She also has learned how to test our patience!!! I have signed a breath of relief through every milestone. I have watched her become the best little “big” sister to “CC”.  I have watched her struggle to crawl, learn to walk, and eat like I have never seen a kid eat. Her and I have spent many hours taking Courtney to her therapy sessions, hiding up stairs during Courtney’s sessions that are at home, and sleeping next to each other in the middle of the night as she has taken over our bed. I love getting to see the many faces of Alyssa. Seriously, she has the cutest looks! In just 2 years, I’ve had so many conversations (that I don’t know a single word that she said) with her just wanting to scream tears of joy because she is actually having a conversation with me. I can’t even begin to imagine missing any of those moments…even the tantrums!

Because I’m alive, tomorrow, November 6th, I get to celebrate her being 2. Yes, that was the scariest day of our lives 2 years ago, but that day brought us Alyssa. Alyssa Jeanne, we love you to the moon and back! Happy Birthday!

I hate Halloween. I’ve made it quite known. So here I am with two girls, one who is at the age that could really enjoy Halloween but is clueless about things like holidays and another one who is still too young to really get it. I tried to come up with every excuse in the book on why I wasn’t going to take them out trick or treating. Really, I probably didn’t an excuse at their age. I went back and forth all day but finally had decided we weren’t going to go because I heard Courtney was cranky.

I was driving home from the fitness center when suddenly I was feeling like I wasn’t doing my job as a mom  by not even really exposing them to Halloween. I’m quick to say they don’t get it so why even bother. Why even bother talking about Halloween. I’ve done that with other things too. Shame on me. That’s not how it works. The only way they are going to learn about Halloween and other things is by actually exposing them to it.

Alyssa has been wearing her costume (having no clue that it’s considered a halloween costume) non stop the past couple days so I knew she would be ready to go. So I decided if I can get Courtney in her costume we would be going trick or treating. By the look on her face when I saw her, I was guessing it wasn’t going to happen. She proved me wrong…I had no issue getting her costume on. I also made sure I grabbed her talker because I was going to teach her how to say “Happy Halloween”. Joe and I got the girls ready and we decided we would just try a few houses. We got to the end of our drive way and went to walk next door and she immediately dropped to the ground. I tried to coerce her, but it wasn’t going to happen. Baby steps…she got her costume on so that’s a plus! Alyssa had fun though! I got back to the house and was proud of my crew for trying. And from here on out, it is worth it to at least expose the girls to things. That is the only way they will learn.

When Alyssa was born, I knew there would be a day where she would surpass Courtney in a lot of developmental areas. I also knew this day would come early on. That day came a couple of months ago. When I started to notice her skills were zooming past Courtney’s, it was bitter sweet. I was able to see the positive side of it. It meant Alyssa was reaching all the developmental milestones. It meant there’s a strong chance Alyssa won’t have autism. It also means that Alyssa is already becoming the “big” sister,  Courtney’s “keeper”, mommy’s helper and so on.

Like I said, the day came a couple of months ago so I’ve had the time to swallow this and for the most part I have come to terms with the fact that Alyssa, who is 2 years younger than Courtney, is way ahead of her developmentally. In fact, I have learned to be grateful. Though it’s been bothering me this past week. I attended a two day conference last week and this week about an assessment/teaching tool that is quite often used with children with Autism. In fact, it is a tool used with Courtney at school and in therapy sessions. When school and therapists shared this with me, they showed me how she scored in the lowest level. At this conference, I got to see what the age equivalence was for the levels. Level 1 is 0-18 months. No, I am not surprised by this. Like I said, I can tell Alyssa has passed her up developmentally and Alyssa is almost 24 months old. Yet this still stung, and has been on my mind since.

This made me think of a meeting I had during one of my first years of teaching. I had this little boy whose mom was pretty educated when it came to child development. I remember the team being surprised by how surprised mom seemed by the results of an assessment. It dawned on my back then, that it wasn’t that she was surprised, it was the sting of actually hearing it.

I’ve been in the field of Autism for a while now. None of Courtney’s behaviors or characteristics surprise me. Nor does the fact that she is scoring so low on an assessment. However, that does not mean it doesn’t sting some times.