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.

I don’t know if I will ever share this post. There are some thoughts I’m just not sure I can share. Today my future was staring me in my face. I was at Lifetime Fitness doing my workout and some young adults with special needs came in the area I was working out in. They weren’t there to work out though. They were there with a lady and they were there to volunteer. They were there to clean the equipment.  Like every mom, I have had dreams for my girls since the day they were born. Words can’t explain the emotions you feel as a mom when you slowly watch those dreams not become possible. There are days where I can tell myself that I still have dreams for Courtney, they are just different, but there are moments that it hurts to think those original dreams are gone. I watched these young adults clean workout equipment and all I can think about was how that wasn’t what I dreamed for my little girl. I know what some of you are thinking…she’s 3, how the hell do I truly know those original dreams of mine for her aren’t possible. Very true. When it comes to autism, there is no way of knowing. What I do know though is my daughter at the age of 3 is a good 2 years behind in most areas when it comes to development. As a teacher, the students that I have taught in the years past who were that low when I had them in preschool, are still needing all the support when it comes to life skills. I don’t want to sound like I have already given up hope, but I do feel I also have to be realistic. The hopeful side is still holding on to some of those dreams, but the realistic side knows that it is very likely that my daughter may be cleaning exercise equipment as a volunteer with an adult near by teaching her how to do it some day.

I’ve seen all these shirts on different sites referring to moms as mama bears, whether it be an autism shirt or just a regular old shirt that says Mama Bear. I never really stopped to think what the term “mama bear” came from. The other day I was venting via text to my good friend from school and she replied back with something comforting about me wanting what is best for my child and then said “mama bear”. It was then that I realized the meaning behind it. It is well known that you don’t want to bother an animal, such as a bear, when they are with their babies. They are on higher alert when they are trying to also protect their babies. I quickly noticed the change in my personality once I had kids. Boy did those mama bear instincts kick in. Then those mama bear instincts really kicked in gear when it became clear that Courtney needed me to be her voice, her advocate. I’ve had to go out of my “no confrontations” box more than I ever imagined I could. But when protecting your cub, a mama bear is ready for anything. So I now own this sweatshirt to remind myself that I’ve got this!

Let’s talk sensory issues. If you know anything about Autism Spectrum Disorder (ASD), you know that most who have ASD have sensory issues. And the range of sensory issues is unimaginable. As a teacher, as soon as I think I have seen it all when it comes to sensory issues, I get a student who has a sensory issue that shocks me. Courtney’s sensory issues are pretty common. Loud noises can bother her, needs to be constantly moving, and the list goes on. She has always had this thing with rubbing things one her lips. She has done this since a baby. I think my mom was one of the first one’s to notice that she had to rub food on her lips before eating it. She explores toys by rubbing them on her lips. As much as she loved rubbing things on her lips, she barely ever put things in her mouth. I probably had too much trust in this behavior, but I never worried about small toys being out with her. It was very eye opening with Alyssa once she started putting things in her mouth. Toys that I never had to hide, needed to be hidden. Alyssa got through that phase and now seems to know what things she can and can not put in her mouth. But the toys are being hidden again. This time, for Courtney. She has suddenly become EXTREMELY oral. Everything, and I mean everything is going in her mouth. I caught her chewing on an emery board the other day! An emery board! I cringe just thinking about it!

So how do you address a sensory issue such as needing to put everything in the mouth? One way is to find a way to meet whatever craving they are seeking more appropriately. So in Courtney’s case, replacing the toys, paper, emery boards with things that are more appropriate to put in the mouth. Things such as food. But wait…she’s extremely picky about the foods she puts in her mouth. Chew toys also help. We have brought out all the old teething rings out and bought all different types of chew toys. The coolest thing happened tonight. We were playing in the family room and Courtney suddenly ran to the fridge. Typically she opens up the fridge which means she wants milk. This time she opened up the freezer. She then left the freezer with one of her teething rings. I was so excited to see her search out what she needed instead of me handing her the items. I was so excited! It’s the little things!

Sensory processing fascinates me. What is making Courtney need to put things in her mouth? What makes her anxiety level sky rocket any time she hears a vacuum cleaner? What make her need to hang upside down?

Sometimes when putting Courtney to bed I lay there a while after she falls asleep just enjoying the peaceful innocence of a sleeping child. She doesn’t stay still long so when she sleeps, I get to enjoy the stillness. When I have a lot on my mind regarding her needs, I lay there hoping that through osmosis, she will give me some type of hint on how to tackle whatever is on my mind. I have found myself a few times whispering the question, “Courtney how do you want me to handle this”?  Tonight I asked her if she is happy in her class, I asked her if I should still be fighting for something different.  Of course she never answers and of course I don’t get any answers through osmosis. So I’m left with the job of figuring out how to handle it myself.

Tomorrow we meet with her team again. We are meeting to review how this placement is working out. Reports say she is happy and doing well. Pictures show her playing next to friends and looking like she is enjoying herself. Of course that makes me happy. The problem is, based on a home team member’s observation, Courtney is a passive participant who needs a lot of prompting to actually be an active participant.

I was talking to a colleague and she was talking about how inclusion works in another district. She discussed how children like Courtney are in a regular classroom. Basically, they are just part of the class while the instruction they are receiving is completely different than their peers. I don’t want Courtney just to be a passive participant. I want her to be engaged. School is not just about making friends and learning from them.

So I need Team Courtney to cheer us on again tomorrow. Not sure what I’m looking to get out of this meeting, but do know that I still am not satisfied.