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.

It’s been a different place every night this week. It seems she can’t let herself relax without the help of melatonin and even then she’s going until she collapses and it doesn’t matter where. Tonight’s bed is under a desk. But she’s asleep! Now time to work on gifts for her very large village.

Current situation…pacing in her room and ON furniture as she goes back and forth from very hyper to crying as if in pain. Two nights in a row. I hate that she is unable to tell me what is wrong. Feel completely helpless during moments like these. This is autism.

Comparing your child to others…we all do it at some point. Especially in the early years when you are watching your child and the children around them reach different milestones.

As a special needs mom, early on I had to work hard at not comparing as I watched kids Courtney’s age and even her own little sister surpass her quickly. I definitely don’t do it as much now. Courtney is where she is suppose to be for Courtney. Doesn’t matter where anyone else her age is at.

But…then there are those moments. Today was one of those moments. We were at my family’s Thanksgiving gathering. My nephew and his wife were there with his 17 month old daughter. We don’t get to see them much at all so it was the first time really seeing all the little skills she’s gaining. Her mom, dad and Aunt were asking her to point to her eyes, nose, feet and so on. It was adorable. But the cuteness turned bittersweet for me. At 17 months she is doing a skill that my 6 year old is still working very hard at trying to master.

It stung and sometimes I just need to acknowledge that feeling instead of beating myself up for feeling this way. I removed myself from the area and a little later I vented via text to a friend. She reminded me of something very important. She reminded me to focus on the skills that Courtney has mastered and how hard she worked to achieve those skills. She is so right.

Courtney works her little tail off 7 days a week. There is not one day during the week where she doesn’t have therapy and or school. Most kids her age had at least 3 days off this past week. Courtney was off school but 2 of those 3 days she still had therapy. Has she mastered pointing to body parts? No but she is working incredibly hard to and I couldn’t be more proud of her!

I’m sure I will always experience these bittersweet moments. It’s part of being an autism mom. The other part of being an autism mom is getting to celebrate each and every skill she works hard to master.

I’m trying so hard not to get frustrated with the potty training process but that is easier said than done. So how is it going?

We have gotten everyone on board with taking Courtney to the bathroom frequently. We are taking her every 30-45 minutes. We still have her in pull-ups during this phase. Why aren’t we trying underwear yet? Honestly, I don’t think she has that awareness yet. Took her diaper off to change her one day and she just peed while standing there. Clearly not aware.

So, progress…

For her, the progress is huge considering where she was last year at this time. Last year she had such a strong aversion to bathrooms that getting her near one causes a lot of aggression. Just this fall school has to come up with an alternative spot to change diapers because they couldn’t get her to step foot in the one there. So the fact that we are getting her to go in the bathroom with little to know resistance is a HUGE celebration. And she is going on the potty! Again, celebration!

Two huge celebrations, so why did I say I was getting frustrated? Basically because I feel it is luck that she goes on the potty. I can’t tell you how many times I’ve taken her and then 5 minutes after she’s off the toilet she pees in her diaper. I’m well aware that this is how potty training works but then comes the reminder that we are at this beginning stage at the age of 6 not at the age of 2 1/2 like most children. Cognitively she still doesn’t understand concepts like wet or dry. She doesn’t even understand the idea of if you stay dry you get a reward. So I can’t help wonder if we will ever get her trained. I know, bad attitude.

In my line of work I know it is completely possible to potty train a child with autism. Some do learn the whole idea of when you feel you have to go you use the bathroom. Some are what we call “time trained” where basically you just take them on a set schedule. We aren’t there yet but I need to remember that doesn’t mean we won’t get there.

Like everything with autism, this will take time, energy and patience. I’m going to stay positive that she will gain this independence. Until then, we will keep plugging away.

I’ve really struggled to find the words to describe the bitter sweetness of this collage of pictures. The pictures are of Alyssa and three of her cousins. I love these pictures. I love the pure joy on her face as she enjoys time with her cousins. I love that even though she can be a pest to them because she is younger, they still love having her by their side. I love that we can see her cousins often and that in some ways they are like additional siblings. Alyssa needs the special relationship that she is developing with them. I honestly couldn’t ask for anything more.

As I smile looking at this collage, there’s this sting I feel too. Where is Courtney in these pictures? She was also there. She was probably climbing into the piano, using the toy box as a balance beam or finding the next toy to put in her mouth. I can guarantee she was happy as can be doing what she was doing and that’s what matters.

Of course there is nothing I want more than her to join in on the fun. I also know there are things I can do to encourage more socialization. But, here’s the thing, there is one thing that is also evident in this picture. Love between cousins that hopefully will be unbreakable. And I also know, though not in this picture, they love Courtney too.

(Thank you to my brother and sister (and their significant others) for letting me share these pictures and also loving my girls unconditionally.)