I want to thank you…

First to the older ones. (The teenagers because all but one cousin is older). I see you. I see how without asking, you are an extra eye at family parties. I see how helpful you are when I throw her in your arms to hold her in a cousin photo. I see you when your parents ask you to follow Courtney around to give me a break. I see you and I thank you.

To the niece that has come to help me at birthday parties so we can attend. You turn it down when I pay you but the truth is, the little I have given you doesn’t even come close to how much it means to me. I see you and thank you.

But there is a set of cousins I need to give a bigger shout out to. The ones that are closest to my girls ages. First thing first…I see how you are trying to grasp this whole autism thing. I see how you are still trying to grasp why Courtney is different. I see you when she hurts you but you try so hard not to show just how much it hurt. I see how much you want her to interact with you but yet you are ok that she doesn’t. She loves you, I hope you know that.

But then there is your relationship with Alyssa. When it comes to Alyssa, you are so much more than cousins. You are so much more than even playmates. You may not realize it yet, but all of you are like older siblings to Alyssa. The older sibling that Courtney is unable to be for Alyssa. She looks up to you like a younger sibling looks up to an older sibling. You are her role models, her heroes. Just like a younger sister, she can be a pain but yet you still love her. I see this and I can’t thank you enough.

A special shout out to my niece who said to me today, “Aunt Erin, how can I help you with Alyssa?” Riley, you made my day, my week, my month, my year! At the age of 8 you saw your aunt struggling and you rescued me. Words can’t even begin to say how thankful I am.

I thank your parents a lot for always being an extra hand, but all of you are helpful too. Thank you for being the best cousins my girls could ever ask for!

I can get easily frustrated with Alyssa. I honestly think it’s my warp mind set being that everything I new about development prior to having Alyssa was based on children with Autism. The fact that a little 4 year old could have so much sass and ability to manipulate a situation is beyond my understanding. The truth is though, Alyssa is amazing. She is wiser than her years and has had to mature more than the typical 4 year old. Alyssa isn’t a typical 4 year old. Yes, she is typical in the means that she does not have learning disabilities but when you are a little sister but very much have to play the role of the big sister on the daily basis, you are far from the typical 4 year old.

I had a moment recently where it hit me hard seeing the role reversal between the two of them. I was changing Courtney’s diaper and she was resisting with all her strength. I called my husband over to assist. Alyssa then came over to assist without us even asking her. She did everything she could do to distract Courtney. Alyssa brought Courtney one toy after another hoping one of them would make Courtney relax so we could change her diaper. Alyssa did this all on her own accord. She noticed we needed help and decided that is how she could help us.

I cried after this moment. Partly because it is awful when it takes 2 people to fight a 6 year old when changing their diaper but I also cried because Alyssa is 4. At the age of 4 on her own initiative more often than not, Alyssa takes on the big sister role. At the age of 4 she seldom asks why Courtney gets away with things that she doesn’t get away with. At the age of 4 she is learning how to be Courtney’s voice and even advocate for her big sister.

I’m not mad at Courtney or even autism for putting Alyssa in this position though my heart does ache to watch moments like the one I shared. I am also insanely proud of Alyssa. She is a rockstar!

Every year I share this memory from 2015. Every year I get this bitter sweet knot in my stomach as I watch this memory. I watch how connected she is in it. I watch how the few words you can understand come freely out of her. A memory that will forever make me smile and shed a tear whenever I watch it.

For those who are new to following my journey, this moment is so bitter sweet because this is before Courtney regressed. Before we “lost” who we thought our little girl was going to become. Before autism became our reality.

The bitter sweetness hurts less every year when this comes up. This year it gave me such a smile because just a week ago, we caught another signing video. A video that shows how far our little girl has come thanks to her huge village that has worked endless hours with her. A new moment that I will also hold very dear to my heart.

I’m sharing both videos with you. The one of Courtney singing “let it go” from the top of her lungs 5 years ago. The other one is Courtney during a session with one of her ABA therapists. This therapist comes to our house a couple hours twice a week. She loved singing songs with Courtney and will sing the same ones over and over so we are starting to see Courtney actually try to sing along.

Hope these videos bring as much joy to you as they do to us.

(Note…I was given permission from her therapist to share this. Also, I do not own the rights to either of these songs but I think Courtney should 😉)

Somewhere I lost control over how the girls sleep. Not that I’ve ever had great control over it, but as of recently, I’ve lost the little control I’ve had. I’m about to put myself out there for some major parent shaming but here I go. As of the last few weeks, we now have both girls sleeping in our bed.

I’m going to skip over how Alyssa started sleeping with me but I will say, She use to be a beautiful sleeper who fell asleep on her own and in her own bedroom. I will also add that if any parents out there have children scared of monsters in their room? DO NOT USE MONSTER SPRAY TO GET RID OF THEM. Total backfire in this house.

As for Courtney, she has been anxious about falling asleep in her own room for a while now. Though once asleep, I have always been able to transfer her to her bed. As of recently, her anxiety about her room as increased. If I’m lucky enough to transfer her without waking her, she wakes up at some point of the night and quickly runs to our room and into the bed. The problem is, once Courtney is awake, she is awake for several hours. Once Courtney is awake, I’m awake because she needs constant eye.

So here’s the dilemma? Courtney (and Alyssa) is sound asleep in my bed tonight? I can keep her there and get a good night sleep or I can move her like I did last night and other nights this week and probably end up awake half the night. What would you do?

Courtney has had sleep issues from day 1. Sleep deprived is the state of my existence. We were on quite a good stretch this fall but all good things must come to an end I guess…



Courtney has loved the feel of Alyssa’s hands since the very beginning. I couldn’t help but smile as I watched Courtney jump to the chance to get a feel of Alyssa’s hands as she was sleeping. Love these girls!

The mom in me says “cheers to the end of winter break! We made it!”

The teacher in me says “crap, winter break is over and I don’t feel rested at all!”

I vented yesterday on another autism mom’s post that it was a rough break. Both girls and husband had nasty colds and Alyssa had an ear infection. It made all three of them a little more irritable. Courtney was just off. The less structure caused her to either be extremely hyper or agitated most days. You can tell she was confused when her therapies were at different times. Sleep? That is what was effected the most during this break. She is spending less time in her bed and more time in mine. Needless to say, I’m going to back to work with my class of children on the spectrum more exhausted than before.

In all honesty though, it wasn’t all that bad. This Christmas season, both before break and during, our family did so many things to celebrate. I felt this year was the first year we truly started what we hope to become family traditions. I also felt it was the first year I truly saw Christmas come alive for Alyssa. Watching the fun she had with Twink (Christmas elf that was passed down from when I was a child) absolutely made my Christmas. It is hard to see how little connection Courtney has to it all but I think I’m getting better at not letting it ruin my Christmas.

So though it was a rough winter break, it was also a wonderful one. But…time to go back to reality!

Courtney has these moments where she gets euphorically happy and hyper. It is very manic like. She starts running and jumping around, making very loud happy noises that are ear piercing. Just the simple action of going to touch her makes her melt to the ground like she is being tickled. Most people can’t help but smile when they see her like this and I agree, it is super cute to see her so happy.

As cute as these moments may seem to most people, these moments can be almost just as difficult as the moments when Courtney is irritable and or mad. During these moments Courtney has absolutely no control of what she is doing. When she is like this you can not get her to do a thing. I want to cry when she is like this when trying to get her in the car because touching her only makes it worse. She has had these episodes in restaurants. Her noises are so loud and ear piercing that you can see the other patrons staring. I’ve even seen some cover their ears.

Courtney can even become aggressive during these moments. She will just go up to you and pinch or scratch you while laughing. I can be so patient with her when she is aggressive but when it happens when she is like this, I have to really work on not losing my patience. Tonight Courtney had one of these episodes and the aggression was bad. She kept coming up to me and either grabbing my arm and pinching me. A few times she grabbed my cheeks and pinched them. Just as I thought she was calming down and laying in my bed she came up from behind and grabbed my face and scratched it.

I so often here when others see her like this…at least she is happy. Yes, I agree, at least she is happy. But this is Autism and even happy can be hard and ugly.

(Picture taken tonight once she was finally calm more than an hour later.)

I blamed Autism today. Not sure why I did but I did. Autism was so indirectly involved in the moment that broke me today, yet I still blamed Autism. The moment broke me hard too.

First some back story. Alyssa can’t always tolerate Courtney’s noises. It’s a significant issue that will cause some pretty tough moments in our house. One way we are trying to handle it is by giving Alyssa options like going to another room or putting on headphones. So today when Alyssa was in one of her moods she chose to put on headphones. She was using the headphones to listen to a movie on an iPad. Her and I were also trying to bake some muffins. Alyssa made a move at one point and the cord knocked over a whole muffin pan of cupcake batter. My reaction scared Alyssa to tears. You know the book, “Don’t Cry Over Spilt Milk”? Well, I bawled my eyes out over spilt batter. I lost control of all that was happening around me. I didn’t even know where to begin to start cleaning up the mess. While trying to figure that out and gain composure, the girls were still needing one thing after another including Courtney grabbing a yogurt out of the fridge and trying to feed it to herself. The penguin on her shirt got more yogurt than she did so yet another mess. I got through the moment just as Joe got home from his workout and in time for me to leave for my workout. Everyone survived.

So when and why did I blame autism? Before I left for my workout I vented via text to my good friend by sending her the picture of the mess and saying “I blame Autism”. How is that all Autism’s fault? Simple, if it weren’t for the fact that Courtney has autism, Alyssa wouldn’t need the headphones that knocked over the pan. I hate myself all over again as I type this. How awful of me to blame autism for something silly like this. Especially because blaming autism sounds like I’m blaming Courtney.

Courtney should never be blamed for the extra stress Autism causes on our family. Autism is hard, but Courtney also shows us how beautiful it is. Let’s just say I’m ready for school to be back in session!

I’m one who sees New Year’s Eve/day as just another day on the calendar. Another day where there is deviation from our much needed routine. I tend not to make any big resolutions for the next year because any that I have in the past are over before I even start. I also see it as the end of my favorite time of year and that just depresses me.

This year isn’t just the end of a year though. As Facebook as reminded me, it’s the end of a decade. I wasn’t going to make a big deal about it being the end of a decade until a friend reminded me what a decade I’ve had. So maybe I will take a moment here to reflect.

So where was I at the beginning of this decade? I was still married to my first husband. Crazy, right?! The decade that we are ending started off with the year I never thought I would get through…being told by who I thought was the love of my life that he no longer loved me. Well…what doesn’t kill you makes you stronger. I can now look back at the beginning of this decade and see that it was a very positive time for me.

Then came the year I met Joe. The year that carved out what the decade was going to become. This decade included three moves and even a move in school buildings for work. As the decade progressed I got re-married and had two beautiful girls. This decade I survived the delivery of Alyssa. Hard to imagine what this decade would have looked Luke for Joe and the girls if I didn’t survive.

The biggest happening of this decade was going from a teacher of children with special needs to a mom of a child with special needs. This decade introduced us to autism in a way I never imagined. This shaped the rest of the decade and the decades that will follow. Not only did we learn what it was like to just be a parent but I truly believe we grew more as parents as I ever imagine we could.

There were a lot of ups and downs during this past decade. Some pretty challenging events were thrown my way. Each one harder then the next it felt. This decade taught me how to defy gravity.

Through each trial, each tear, each laugh, each mountain climbed, there is something that grew that I will forever be grateful for. My support system. So as this year and decade come to an end, I want to thank you for being by our side and cheering us on. I wish everyone a very happy new year!

“Is she excited for Christmas?”

“What does she want for Christmas?”

“Does she understand the whole Christmas thing?”

There are so many questions I have been asked in regards to Courtney and Christmas. The answers to the ones above? Honestly, I don’t know because she can’t tell me.

I wish she could tell me the answers to some of these questions. I wish I knew if she even realizes it is Christmas. As a mother of a non-verbal child you learn to understand their thoughts through other cues. I can tell there are parts of the holiday season that excite her and there are parts that overwhelm her (like parties with my massive family). Most of than not though, I get the feeling that she sees this time of year as just another day.

I was so excited this year because for the first time one of my girls was really ready for all the fun that comes with the holiday season. Together alyssa and I counted down, started some new traditions and I even got to pass down some of my traditions from when I was growing up. Of course we included Courtney but I didn’t force anything on her.

There were moments where it tugged at my heart that she didn’t seem to care or understand why an Elf was leaving letters, why we were making special treats for her teacher or why we were making cookies for some guy named Santa. I didn’t let it stop me because Alyssa needs these traditions.

So no, I don’t know how Courtney feels about Christmas. What I do know is we will keep making it fun and maybe, just maybe, one day she will be able to talk about how fun it was.