We have this crazy streak going on. A streak that is so unheard of for Courtney that I can honestly say this is a first. A streak that I’m afraid to talk about in fear of jinxing it even though I am not superstitious what so ever. So as you read about this streak, humor me and knock on some wood.

Courtney has been a bad sleeper since day 1. Alyssa started sleeping through the night before she night. The awful part about Courtney’s middle of the night wake ups is she is up for hours. She sleeps through the night now, but the bigger problem is getting her to fall asleep. Most nights it can take anywhere from an hour to two hours to get her to sleep. She needs me by her side for this process so this makes it impossible for me to accomplish anything at night. We started using melatonin to help get her down, which would help but she would go through these screaming fits right before she would go to sleep any time we gave it to her.

So now that we are going on almost a week straight of her falling asleep before 8:45 p.m., no fight, no melatonin, my first thought was she must be sick. A WEEK STRAIGHT!!! And one night she fell asleep before 8:30 even after taking a 45 minute nap. A 5-10 minute nap usually means a 11 p.m. bedtime even with melatonin. I am not getting my hopes up at all that this is our new norm, but boy is it nice to not have to fight her falling asleep right now. Now go knock on some wood!

Side note…I’m sure some are looking at this picture wondering if she sleeps with the headphones on. Courtney still wears her headphones 95% of the day. She even needs them on when trying to fall asleep. I take them off once she is fully asleep. To give you a sense how dependent she is on the headphones…when I take them off her while she is sleeping, her hands immediately go on her ears.

This post is not autism related. This post is also going to be more personal than I ever thought I would get in my blog. Some may even question why I shared something so personal on social media. But I continue to wonder why this topic is so taboo to discuss. Hopefully this post will help others realize they are not alone.

October is miscarriage/infant loss awareness month. 1 of 4 women experience a miscarriage and or infant loss. 1 of 4! So why if it is that prevalent did I feel so alone when I had a miscarriage 5 years ago? Why did I feel that it was no big deal that I lost a little thing that I was carrying for 12 weeks and even named. Why do I feel years later I can’t reference the loss I had? Most actually don’t know that it was my second miscarriage. I had one when married to my ex husband. That one happened at only 7 weeks so that doesn’t even really count, right? Wrong! I wonder every year around the time I miscarried both what life would have been like if I hadn’t. Yes, of course I realize there wouldn’t be an Alyssa if it weren’t for my miscarriage 5 years ago and what would life be without Alyssa?! That doesn’t mean I can forget about the little human that was growing inside me.

It’s not part of miscarriage/infant loss awareness but this time of year I always think of another loss I have experienced. The loss of being able to have more children. When Alyssa was born because of severe complications after delivery, my uterus was removed. I will never regret the decision my husband made when they asked him if it was ok to remove it to save my life. Of course I’ll take my life over more children but we wanted more so that was a big blow to my emotions and continues to be something I struggle with,

“It was a blessing in disguise”, “could you really have handled another child in your crazy life”, “probably a good thing you can’t have more”, “at least you have your beautiful girls”. Yes, these are comments that have been made to me and maybe some are true. To those of you who have said this to me, don’t worry, I don’t hate you for it because I am able to understand that it comes from not being in the situation yourself. Until you live it, you can never understand the feeling I and others out there feel. Joe and I would have tried for a third. Crazy or not, that’s what we would have done. I came from a big family and I wanted a big family.

So on this awareness day, I think of all of those women who have miscarried, have had a still birth or lost an infant. My heart breaks for you as you will always mourn that loss in some way. I also think of the women who are unable to bare children for one reason or another because you too are mourning a loss. A loss of the children you wanted. Yes, it’s different, but it’s a loss. I get it and mourn with you.

Courtney’s struggles with all self help skills. She struggles feeding herself, putting close on and off, bathing, brushing teeth, washing hands and the biggest one being using the toilet.

In the past week or so, we have made some gains in a few of these areas which is HUGE! I worry all the time just how dependent she is going to be of me so any time we make any growth in the areas of self help I feel a small sense of relief.

Well, she has made some gains recently!!!! She is really doing well feeding herself. It’s been hard to work on this one because she doesn’t eat many foods that require a fork or spoon. Watching her feed herself cereal and milk with little mess makes my heart happy! We stopped eating the same time as the girls PARTLY because one of us had to help Courtney eat.

The other self help skill she is making gains on is dressing herself! I think as parents we take for granted how helpful it is when they become independent in some of these skills. She is far from independent but she’s progressing and I am celebrating!

She has made big gains in one other area. This one is the big one. We were so far (and still far) from being independent in this area that I was losing hope she would ever get it. Folks…we are back to potty training! We have tried a few times but each time we took huge steps backwards. We have spent the last year deathly afraid of not only public bathrooms but the bathroom in our own house. This was paralyzing especially when in public. I was resorting to finding private spots even though out in public. It’s one thing for a baby to be changed out in public but a 5 year old girl? I was humiliated for her! We slowly started working on her fear of our bathroom. As of a month or so ago, we conquered our bathroom! We were getting her to sit on the toilet once or twice a day and even a few times she actually went!

This excitement was quickly crushed when I found out from her teacher that they were using dividers and a changing pad to make a private spot in the class to change her because it was so hard to get her in the bathroom there. Well that was it, my daughter was going to be in diapers for life.

Fortunately her school team, home team and private clinic team didn’t have the same negative attitude as I did. They cautiously started pushing her more to go in the bathroom at school or the clinic. I asked them to be delicate about it because of our past regressions when trying. After just a short time I started receiving updates such as “we got her to step in the bathroom”, “we got her to put her hand under the running the water”, “she tolerated playing with her favorite toy in the bathroom”, to “SHE SAT ON THE TOILET TODAY”. Maybe, just maybe we will be able to potty train her!

So wish us luck as we slowly increase our expectations in this area. We are still so far from saying she is potty trained. I continue to be afraid to get my hopes up in fear of disappointment but I’m at the point where I will allow myself to be cautiously optimistic.

(Just has to share a picture of her in the washing machine.)

When Alyssa showed me a coloring page from Sunday school that had her name written on top, I immediately assumed one of her cousins who goes to Sunday school with her wrote it. She can’t write her name! But then looking at it closer, it didn’t look like her cousins (6 and 8 years old) did it either. I asked Alyssa and she said she did it. I Still thought it wasn’t possible. She doesn’t know how to write her name and nor could she have already learned how to that fast in preschool.

Being that I teach preschoolers with autism and my oldest has autism I find that it is easy to forget what proper development in certain skills looks like. You mean it doesn’t take every preschooler a couple years, if even, to learn how to write their name?

A piece of work cane home in Alyssa’s backpack today. Sure enough, across the paper is her name written the same way it was written on the coloring page from the other day. Alyssa, my baby girl, can write her name! I am so proud of her!

Another autism mom that I follow on social media was just talking about what it is like watching a younger sibling surpass the older sibling with special needs. It really is bitter sweet. There is relief that akyssa doesn’t lack the skills Courtney does, there is pride as I watch her take in information like a sponge, but there is this little sting I also feel as I see how much further Courtney is behind Alyssa. Courtney is 6 years old, has had 3 years of preschool and still is not even close to being able to write her name. She is still learning how to imitate drawing horizontal and vertical lines.

But life isn’t a race to the finish line. If Courtney needs longer to reach certain milestones, I will give her that time.

I am so proud of the progress both of my girls are making in this journey called life!

Thirteen years ago I voluntarily made the switch from teaching 1st-3rd Graders with emotional/behavior orders to teaching a structured preschool classroom for children on the autism spectrum or who benefited from a structured environment. I didn’t switch positions because I didn’t like my first position. I switched because I really wanted to work in the area of autism. What I didn’t know then was I was eventually going to have my own child with autism. If I knew then would I have still switched? Who knows.

Being a mom of a child with autism can be hard work. Being a teacher of children with autism can be hard work. Being both can be very trying some days. Ok, who am I kidding, a lot of days! Last school year was a very difficult school year both for Courtney and for my classroom. It was so hard at school managing all the different behaviors in the classroom and then to come home and manage the same difficult behaviors. I hated that by the time I got home I was already physically, mentally and emotionally drained yet still had to face the challenges of my own child with autism. By the end of the year I felt so burnt out. I really questioned my ability to continue teaching. Any time I mentally considered the possibility of leaving my position, I could tell my heart was not ready.

So here I am, another year of doing double Autism duty. Again, I feel the toll both sides are taking on me but again I can tell my heart is not ready to change what I am doing. It’s hard, it’s exhausting but here’s the thing…I love both jobs too much.

When Courtney was born, we were blessed to have family as her caregivers. Three days a week my mom watched her at her house and two days a week joe’s parents watched her their house. We were able to continue using them when Alyssa was born. It is so hard leaving your babies to go to work but knowing they are with people who love them definitely helps.

The time came to figure out different caregiver plans when Courtney needed a 5 day a week preschool program. Because of her needs, we knew a day care center wasn’t going to work. We needed a nanny. That is when Savannah entered our lives.

I was so nervous to leave my precious girls with a complete stranger but it ended up being the beginning of a beautiful relationship. She became our life saver!

As I’ve shared, she is leaving. We started with a new nanny when the school year started but Savannah was still around some for date nights and one last overnight but it’s time to say goodbye.

I will forever be grateful for all she did for our family these past 3 years and she will be missed. Hopefully we will always be on her list of stops whenever she is in town.

We love you, Sahna!!! (No clue how to spell what Alyssa calls you.)

I haven’t posted about horse therapy in a while partly because Courtney has been going through a rough patch with it. It started a few months back when she would start crying in the car as we got closer to the stables. We didn’t take it as a sign to stop therapy because once at the stables she would seem happy. Yet she wasn’t all that happy once she got on the horse. We also did t want to stop therapy because Alyssa and I truly enjoy our time with the horses.

Ms. Christine and I were determined to figure out what changed for Courtney. Was it the change from bareback riding to riding with a saddle? Was it riding inside versus outside? Did something spook her?

After testing out a couple different theories, we finally came to the conclusion that it was the helmet. But why? Then it dawned on me. This aversion to the helmet started around the same time she became very dependent on her headphones. It’s gotten better but when you take Courtney’s headphones off, her hands immediately cover ears and you can sense her anxiety increase. So of course it made sense that horse therapy was starting to be stressful. When it was time to ride, we ripped her security blanket from her. Makes complete sense!

We have been working on her decreasing the wear of the headphones. We don’t want to make her uncomfortable so we are doing it delicately and definitely not keeping them from her. But there are going to be times where she may need to take them off so we are working on it.

Today’s therapy session was fantastic. She tolerated us removing the headphones and putting the helmet on. And…there were smiles while riding the horse again. I was so excited to see that smile. So glad we stuck it out. Just another reminder how behaviors are a form of communication. There is a reason for every behavior. Sometimes it’s hard to find the reason, but taking that time can pay off!

“Aware is halfway there.” I heard this in a workshop today and it resonated with me as a mom of a daughter with autism. Awareness of Autism is huge and I am so glad awareness is being spread daily. But now as the CDC shows that it is now 1 of 49 children have autism, it’s hard not to be aware of it? It is so much more than being aware though. Aware is halfway there. The bigger question is, are you accepting Autism and all that it entails?

What do I mean by accepting Autism? It means not judging when you see a child melting down in a store and maybe even taking a moment to understand what could be causing the meltdown. If you are really brave, even seeing if you can assist the parent. It means understanding that some will have a hard time waiting their turn in a line, being quiet in a movie theatre, or need to wear accessories like chewies and headphones all the time.

As most know, Courtney wears adorable pink headphones ALL THE TIME. They help her with not only noises that she is sensitive to but also managing her anxiety. I swear she has been happier in general since starting to wear them. Though we are trying to find ways for her to cope without them too because we don’t want her to become even more sensitive to noises. I’ve talked a lot about these headphones so you are probably well AWARE of whey she wears them so going to leave it at that. My question is…what were your first thoughts when seeing her school picture? It is very much ok if you first thought, “why didn’t school take the headphones off”. I don’t blame you! Her dad and I both did. But honestly, that is the acceptance part. I think part of reaching the accepting Autism part is being able to look past the differences and accept them for who they are. Courtney wears headphones, that is who she is. As my cousin said to me in a text, that is her accessory. Some wear rubber bands to keep their hair back, some wear glasses to see, some wear hearing aides to hear. Courtney wears headphones to be regulated. I needed a minute when I first saw the picture, but then I saw the picture as it was. A beautiful picture of my little girl! Sitting still, smiling and happy! What more can I ask for?

And that, folks, is acceptance!

I have the app, Time Hop, on my phone. It’s an app that is synced with your photos, facebook and other social media. It pulls up all photos or posts that you made on a certain day. So you get to relive all the ups and downs that ever happened on a specific date. It’s a good thing and a bad thing to have this app. I get to relive my favorite moments with family and friends and I relive some of my lowest days as I went through my divorce and other tough days. I love looking at old pictures the girls when they were so little and the things they use to do that made us laugh or cry. But occasionally a picture of Courtney comes up like the ones I shared above that make me both smile and cry. (Side note…Kelly, if you are reading this, you always do such an amazing job capturing pictures of the girls!) I smile because honestly, how beautiful is that face? And those eyes!!!! They are daggers!!! But why do I want to cry when I see this picture?

I’ve talked about it before, but Courtney was developing right on track and then started to regress sometime between the age of 1 and 2 years old. It was so hard to watch. As I have mentioned in previous posts, I feel pictures from that time are just so telling. I see pictures from before the regression where she looks so connected with our world and then pictures like the ones above where she is no where to be found in those beautiful eyes. In these pictures you can almost see how they are looking right past you and not connecting with you. My sister Kelly (also known as my amazing photographer), another family member and I were chatting not too long ago about when I really knew Courtney had autism. I explained how I can tell the timeline just looking at old pictures of her. My “photographer” said she can too.

The memory these pictures also triggered is the health issues we were dealing with around the time these pictures were taken. The fall of when she turned two, Courtney went through this horrible phase that I often describe as very similar to when she was a colicky infant. On and off moments of unconsolable crying. I remember my dad calling me at school saying that my mom just couldn’t comfort her. I broke down into tears asking, “what is wrong with my little girl?” I was already noticing red flags at this point but this is where it became evident as whatever skills she hadn’t lost yet disappeared.

As these pictures appear in my “time hop”, I’ll have a moment, but then I think about where she is now. I look at recent pictures and see how happy she is and think about the progress she has made over the past 4 years. I am so incredibly proud of every little step she has made. Those eyes are still daggers and sometimes they still stare right through you as if she doesn’t even notice you are there. But when those big blue eyes do connect with you, watch out, your heart will melt. Yes, these pictures are so telling. They tell me about the ups and downs we have gone through in this journey. But most of all, they remind me of the beautiful, strong, little girl that I’m lucky to have as my daughter.

Six years ago today, this beautiful blue eyed bundle of joy entered our lives and made us parents.

A Winnie the Pooh drawing (painted by her Grandma Beej) hangs in the room that was hers (now Alyssa’s) when she was a baby. “As soon as I met you, I knew am adventure was about to happen.” Six years ago we didn’t have the slightest clue of what that adventure was going to look like, but we knew we would love her unconditionally through it.

We have gotten a lot of bumps and bruises along the way on her adventure but it has also been filled with so much fun and laughter. Her progress through her adventures have been amazing and I couldn’t be prouder.

People say Courtney is lucky to have me as a mom. The truth is, I’m lucky to have her as my daughter. She has taught me so much in just 6 years! What an adventure it has been and I wouldn’t trade it for the world!

Happy Birthday, my sweet Courtney! Love you to pieces!