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.

October is AAC awareness month. So many may ask, what is AAC stand for. Definitely hard to keep track of all the acronyms in the special education world. When you both teach children with special needs and have a child with special needs, you often find yourself talking in acronyms forgetting some may not know what you are talking about. AAC stands for Augmentative and Alternative Communication. AAC comes in many forms. For Courtney, it’s in the form of a tablet with a layout of pictures that is considered a voice output system. These pictures lead to more pictures that lead to more pictures and so on. When you push these buttons, a voice speaks.

Courtney started this system last year. We decided to go this route after spending a year of her receiving speech therapy and seeing that her verbal language was not improving. Going the route of a device isn’t easy either. It wasn’t just handing this cool looking tablet to her and she would suddenly start talking. Imagine your first day in a foreign language class. Basically, handing a device to a child is like you looking through that foreign language text book when they first hand it to you. Except you are handing this device to a child with significant delays.

So how do you even begin to teach a child how to use it? The best way to teach a child how to use it is the same way you would teach a baby to talk. Model, model, model. Here’s the difficult part. For most parents, this device is a foreign language to them too. I watch Joe struggle to use it because of how much it is still a foreign language to him. I find it very hard to use the device at home myself and here I am “fluent” in it since my students at school all have one. Courtney has her ways to communicate her wants and needs to us through non-verbal ways. So in the midst of making dinner, a 2 year old demanding your attention, husband arriving home and everything else that can happen in a 15 minute span, when Courtney goes to the fridge and opens the door, sometimes it is easier to just get her the milk without making her request it with her talker. But how is that teaching her how to communicate? Working with Courtney on this device has opened my eyes to what it’s like for the parent’s of my students. Here Courtney has someone who is able to speak her foreign language struggle in the midst of chaos, how are parent’s who don’t know the foreign language yet able to model in the midst of chaos? I use to get really frustrated with parents when they weren’t using it at home, but I kinda get it now. Sometimes I get really frustrated that Joe isn’t using it more, but again, I have to step back and realize, it’s just as much as a foreign to him as it is to her. So how do we make it less of a foreign language to families? As for me, what will make me use it more with her? I just have to keep reminding myself that if I want to teach my daughter how to communicate with the world around her, I need to be as diligent as I am with teaching Alyssa how to speak.

I’m doing a poor job selling how awesome AAC is. It is truly awesome. These devices give children like Courtney a voice. Let me tell you, I remember her first request for milk on this thing like most people remember their child’s first word. One of my sisters watched the girls not too long ago. She got to observe Courtney during one of her therapy sessions and got to see her use the device. When I got home, my sister talked about how cool it was to see her use it and how it would be great to be more familiar with it. That made my day. It’s motivating me to work harder not only with Courtney, but teaching those who love Courtney how to use it. Alyssa isn’t only learning how to talk by listening to me. She is listening to her cousins, her aunts and uncles, her grandparents. Courtney needs to learn from them too. It’s time for me to teach them too. Not sure how yet, but no time better than AAC Awareness month.

I have nine brothers and sisters. Most of whom are married and have kids of their own. So when we have a gathering, 20 people is a small turn out. We usually quickly add up to 40. So as this weekend approach that included my nephew’s wedding combined with a family reunion, I got a little anxious on how Courtney would handle it. Of course it isn’t the first family gathering she has gone to, but now that Alyssa is a walking, talking, bossy, demanding little toddler, handling that on top of making sure Courtney isn’t over stimulated has become nearly impossible at times. To top it off, my husband was unable to make it to the wedding reception on Sunday.

Joe and I came up with a plan to make the weekend work. Or so we thought. Then things happened that changed the agenda on Saturday so we had to do some rethinking. Trying to figure out our plan of attack started stressing me out. I even sent a text to my other sister who has a child with special needs saying I was stressed trying to figure out how to make it work knowing she would understand. I said at the beginning of this autism adventure that I was going to try to not let Courtney’s autism run our life. Not that it’s a bad thing if you do, but it was important to me not to let it. So when our new plan was to have Joe stay back with Courtney and just Alyssa and I go to Saturday’s events, my heart ached a little bit. I had made a decision that was probably best for Courtney and made my life somewhat easier, but was it what I truly wanted. Since nothing seems to go smoothly, something else came up at the last minute and we had to change our plans again. So, we were heading to a family gathering at a forest preserves as a family of four with the plan that Joe would leave to deal with something that came up on his side of the family and the girls and I would go to dinner with my family. It can take a village though to go out to dinner with my girls so I made sure my family knew that me joining them meant I needed help.

I was so frustrated when some of the changes happened on Saturday, but in the end, it really did work out for the best. I got to watch Courtney bond with her Uncle Phil as he spent 10 minutes pumping water at the water pump so she can play in it. The look on her face was priceless and you can see that it was making her uncle happy that he was able to make her so happy. Thank you, Phil!!! I got to watch Alyssa continue to have such a beautiful relationship with her grandma even though she doesn’t get to see her as often as she use to when she watched her during the week. Boy does she love her grandmas! I got to see Courtney get comfortable with her Aunt Laurie who was a HUGE help during dinner. Watching Laurie get excited that Courtney was taking her hand was beautiful. It meant so much to me. It was a beautiful day!

Now for Sunday. Thanks to the bright thinking of the mother of the groom, a while back it was decided that Savannah, our nanny, was going to be my date for the wedding reception. That way the girls could be there for part of it , I had help and when they had enough, they could go home with Savannah and I could continue hanging out with my family. About 20 minutes into the wedding reception, it was evident that it was the best decision. Courtney melted down pretty quickly and actually so did Alyssa (who fell off a chair). We each took one of them and went somewhere to calm them down. Alyssa calmed down pretty quickly but Courtney struggled for a while. Savannah, my hero, took her outside. Savannah could see how much she was struggling with the crowd so she found stuff for her to do outside for a while. Thankfully part of the reception was outside so they were still part of the event ;). Courtney was able to come back in and be a part of the gathering for a short time. You could see in her face though how hard it was on her. But here is the positive of all of this. I at first was worried about what people were thinking as she melted down and I quickly left the big room with her, but when I came back, people wanted to not only know how they could help, but wanted to know more about Courtney and Autism. I enjoyed showing my sister’s in-laws Courtney’s talker and explaining how we teach her how to use it, I enjoyed introducing the young lady  who has helped my family in ways that I could never explain to my family. Better yet, I was able to get through a busy weekend without letting Autism run our life. We made it work.

A huge shout out to all those who helped make it work!