Recently I shared that I was worried we had Courtney in too many hours of therapy/school. It concerned me that some of the increase of behaviors was her trying to tell us that she needed a break.

It was unplanned and more hours then I would ever cut, but she got her break. Over 2 weeks ago we received news that there was some issues with our insurance and her home therapies (ABA) will be on hold until it was figured out. This is the therapy that comes to our house 15 hours a week! The therapy that helps keep structure in our home and works on keeping Courtney grounded. So to say we have missed this therapy the past two 1/2 weeks would be an understatement.

During this time I’m pretty sure Courtney has started sitting still even less, started climbing and jumping from higher heights, and I’ve noticed a lower tolerance threshold. We have caught her climbing our banister I’m a spot where she could have fallen several feet, standing in the toilet, and even attempting to get in a medicine bottle.

I was hard on myself at times. How, as an autism teacher myself, can I not structure up her time at home so she can be a little more grounded…literally?!

So needless to say, we were super excited and relieved that ABA therapy was back today. Though not fully yet. There are some issues that need to be worked out still. But we will welcome any structure we can get.

Every mom does it. Every mom spends time looking into the future and wondering what their child will be like as an adult. Will they find a wonderful spouse, a good paying job, have a family, where will they live, will they be happy? You too have probably lied awake at night finding yourself thinking about this. You too probably asked yourself why the hell am I thinking about this now instead of sleeping?

My brain started thinking about the future after Courtney woke up in the middle of the night. I brought her to my bedroom as I always do because she really does not like to be in her bed awake. She was super agitated and took a couple swings and kicks at me. It was after a couple hits that my brain started thinking about the future. Though I wasn’t asking myself if she would find a wonderful spouse, it was will there come a time where she is too big and strong for us to handle. It wasn’t will she find a good paying job but will we have enough money saved up so Alyssa doesn’t have to feel financially burdened by her older sister. I did start thinking about where she would live but not the same way others are wondering. I was wondering who she would live with or what home would she live in. I did everything in my power not let me brain ask these questions. She is only 5. A lot can happen in the coming years, but it’s hard not to look into future sometimes.

Courtney was up for over 2 hours. During these 2 hours my brain was thinking about so many things. As time passed, Courtney fought sleep harder and you can just feel her agitation. I finally pulled her close to me. As close I could. I wrapped my arms around her tight and started taking slow deep breaths so she can feel the calmness. There is something I noticed with Courtney very early on when she was an infant. She could sense when I was anxious and it would make it very hard to calm her down. So as I shut my thinking off and took slow deep breaths, I could feel her body relax until finally she drifted asleep. This moment reminded me that as much as it is hard not to think about her future, it is more important for me to make sure she knows that right here and now she is safe and loved. That right now, I will do whatever possible to help her succeed and navigate this crazy world so her future is as bright as she deserves it to be.

Courtney and I did a mommy and tot gymnastics class when she was 2 years old. Long story short..,it was a disaster. It was that class that really opened my eyes on how different Courtney was. It was more than a speech delay. She was not developing like her peers in all areas (except physical). It took one day of class to see this. I called my sister in tears on my way home from that first class. All I could get out was, “she’s that child”.

I’ve never done another park district class with her since then. Too afraid to. Having that thought process is sad because I know there are programs out there that will meet her needs.

I got a video from her teacher this week that may help me change my mind. Maybe, just maybe she’s ready for some type of gymnastics class. This video is of Courtney at school in gym class. She is doing what her peer next to her is doing. For the brief 6 seconds of this video, Courtney looks just like her typical peer. Courtney is participating like her typical peer. It’s just 6 seconds but it’s a beautiful 6 seconds. Sounds corny but it’s 6 seconds that finally let me forget about how frustrating and disappointing that gymnastics class was 3 years ago.

After her teacher sent me the video, I shared with her the gymnastics story and how beautiful it is to see Courtney participating in a gym class next to her peers. She was so thrilled she was able to capture the quick moment for me.

Pretty sure I have watched this video 100 times now. One proud mommy!

I workout at LifeTime Fitness regularly. A couple days a week I do an early morning workout there. Today was the first time back at my early morning routine since before Christmas. As I do every time this year, I noticed there were double the amount of people at the center than there usually is. New Year’s Resolution time! And as the weeks go by, that number will slowly decrease as people start breaking their resolutions.

I’ve made many New Year’s Resolutions over the years. Most I didn’t stick with, but a few I did. For many years now I’ve decided not to because honestly, what’s the purpose? We just break them in the end. I made one this year. A very important one and one I will do everything in my power to stick to.

Over the past several months we have seen regression in Courtney’s ability and or willingness to communicate with her talker. Not surprising with all the medical issues she was having. Surprised or not, it still breaks my heart. To teach baby’s to talk you model by speaking in their language to them. So for Courtney, I have to speak to her and show her how to speak using her talker. It is easier said than done and I don’t use her talker nearly as much as I should. So my New Years Resolution is to use it more. If I expect her to use it then I need to use it. This is one resolution I don’t intend to break!

There is so much behind those beautiful blue eyes and in that little brain of her. So many skills and so many thoughts but she just lacks the means or maybe even the motivation to share it.

Every 6 months Courtney sees a developmental pediatrician. This is the doctor (along with a team of therapists) that gave her the diagnosis of autism. This doctor will follower her in her development and help us best help her.

At her last appointment this summer, we decided it was time to see if she could handle some cognitive testing to get a better idea of where she is cognitively. Not sure why, but I was so nervous about this appointment. I’m the end, it means nothing. Does it really matter where she is cognitively as long as we are giving her what she needs to progress? No. But I was still nervous. It’s never easy to hear how behind your child actually is.

Well, we still don’t know. The psychologist had to decide that Courtney continues to be not testable. At this point they are taking my word that she can do some of the skills they were testing on because Courtney wasn’t showing them she could. Yes, doctor, Courtney knows which animal is a cow. Yes, she knows her colors, numbers and letters. Today I truly had to be her voice.

Not sure what is harder to watch…her not answering a question because she doesn’t know the answer or not answering because she has completely checked out. So in the end, we left there with the doctor saying she has definitely regressed. Regressed behaviorally. They agree, based on what I told them, that it was a rough fall and that is why there is regression.

Sometimes it really makes my heart ache to think of all that is in her little head and how difficult it is for her to share it. It kills me that even with 46 hours of school and therapy, we are only inching away.

But I hope she also knows just how proud we are of her and how loved she is.

I’ve been called “super mom” by others. Not always sure how to respond to that phrase because honestly, I’m just doing my job. Though with that said, I do use that compliment to keep me going.

The problem is, when I think about the phrase, “super mom”, I think of super heroes. And to me super heroes can do it all and are unbreakable.

Well I broke yesterday so therefore, I am no super mom.

Don’t worry, I was only that hard on myself for about 30 minutes. But it happened. I broke. I let the exhaustion from an amazing trip to Disney, the stress of being an autism mom, and just the regular stress of being a working mom of 2 finally get to me.

It was Courtney scratching me that finally caused me to break. An act that she really doesn’t have much control of at this point. She scratches when she is trying to communicate frustration, pain or over stimulation. When you don’t have the words to express this can you blame her? But as the receiver of the aggression or as the one making sure she doesn’t go after others, it can wear on you. In fact, it can break you.

I cried and cried hard. Alyssa even asked what was wrong. But I think sometimes these moments are needed. How does the saying go? “What doesn’t kill you makes you stronger.” I gave myself that moment of ugly crying. I kissed my girls and reminded them that I loved them. So super moms do break.

To the wonderful lady at the Candle Light Procession at Epcot,

Thank you! Thank you from the bottom of our heart!

Thank you for making room for our double stroller so we can enjoy a prime standing room only spot. But that wasn’t all you did when you offered us that spot. You quickly became an extra hand. Not just any extra hand. An extra hand that accepted all that comes with helping us.

We had a moment to share our background as we waited for the concert to start. What I didn’t share is my family can’t do shows because sitting still is just too hard for Courtney. In fact, she barely made it through a 25 minute sing along of Frozen and didn’t make it through a 10 minute Monster’s Inc show this trip.

As she touched your hands and put her feet on you, I explained how she loves to feel things. Didn’t bother you at all. In fact, your words were, “I’m fine with it as long as you are”. What I didn’t tell you is how hard lines have been even with a disability pass because she is so touchy-feely. I didn’t tell you how many times I had to say to people this trip while waiting in line, “sorry she is so touchy-feely” as she touched those standing by us. (Fortunately no one seemed to mind.)

I did share with you that my biggest fear in crowds is that she can pinch or bite. That didn’t turn you away. In fact, you held her hand and anytime she tried to pinch, you just gently reminded her to have nice hands. So not only were my husband and I able to watch this 30 minute concert, we were able to let our guard down just a little bit. If only you knew how high alert I’ve needed to be on this trip. Even while we were on high alert, Courtney still managed to bite one princess and pinch a few other characters and cast members.

You may have just popped into our lives for 30 minutes, but I will forever remember how you almost made it your mission to make sure we got to watch the whole procession. You made it possible for us to cap off our magical 5 days in such a beautiful way.

Oh wait, I didn’t share with you how my husband and I attended this candle light procession just over 6 years ago as part of our honeymoon. When planning this years trip I wanted to make sure we had tickets to the procession but my husband reminded me how it wasn’t possible with Courtney. You, a stranger, made it possible.

Disney world with two kids 5 and under at Christmas time? Are you nuts? Wait, one has autism? Yep, you are truly nuts! Pretty sure most people have wanted to say that me once I started mentioning our plans. And, there have moments so far that I actually think those who think that are right. Moments where I watch Courtney get overstimulated to the point of almost breaking skin while biting herself (picture captured of this moment). Moments where I actually found myself thinking let’s just go home as I drove in circles at the hotel parking lot because the hotel room is just too different for her. Amazing.y enough, Alyssa puking as we left for the airport was not one of these moments!

Those who have never been to Disney or may not know about the true magic that happens there. You may hear about it and think…magic? Whatever. It’s an overpriced theme park that steals your money. People talk about how it’s like pixie dust gets sprinkled over you while at Disney. They say it because it’s true.

The moment was so clear of for us when that pixie dust was sprinkled. Goofy had visited our table at a moment that Courtney was so overstimulated. Because of that he moved on to the next table. Other characters stopped by. She wasn’t too keen on them either. Alyssa was of course cautiously soaking in all the fun as the characters visited. Courtney finally calmed down and are meal was over. We can tell Goofy was making his rounds again so we decided to wait. We are so glad we did.

Maybe if we got a special magnifying glass we can see the pixie dust in the pictures with Goofy. Maybe the dust was on his nose. As joe was snapping pictures trying not to miss a second of the magic, we looked at each other and you can tell we were both holding back the happy tears. Both of their smiles and giggles as that silly dog interacted with them was priceless. Will they remember that moment? I’m not sure. But joe and I will.

Disney is a tough place for Courtney. There were more moments where I asked if we should ever do this again. The thing is, Courtney has a sister who should get to experience Disney. And now that I’ve seen this magic a few times, if we are patient, the pixie dust will scatter down on Courtney and she too will be able to relax enough to enjoy it.

Best Christmas Ever!

We venture out to dinner most Saturday’s with Joe’s parents. We go to the same restaurant every time. Going out to eat with kids isn’t easy as all parents know. Add Autism to that mix and it makes it even harder. But we still do it. (Some day I’ll do a post about the amazing waiter that helps make these dinners successful for Courtney but that’s for another day.)

Going out to dinner takes planning. Courtney is such a picky eater that we have to bring food for her including her milk. A while back, her feeding therapist and I were talking about food items I wanted to work on with Courtney. As we brainstormed food items, I mentioned how it would be awesome to go out to dinner as a family without having to bring her dinner with.

Tonight it happened. We brought her food like always. Through the past couple years, we have found a few items that she likes there so we we have had to bring less of her food. Usually at some point during the dinner she decides she doesn’t want the French fries or roll and requests an item we brought. It didn’t hit me until on my way home as I was sharing with her feeding therapist via text about how she tried sherbet that Courtney did not need any of the food I packed.

We are no where close to being able to go to a restaurant without her food but I’ve become ok with that. We are starting to plan how we will pack all her food for our big trip coming up. It does not matter how kid friendly a restaurant is when you are brand specific on your food items. This is autism and I wouldn’t trade it for the world.

A year and a half ago (Spring of 2018), Joe and I sat in Courtney’s placement meeting and shared that we disagreed with their placement for her. They decided to have her spend half her day in a blended setting. I remember sharing with them that Courtney spends a lot of time with her cousins who are similar age and barely acknowledges their presence let alone interact with them. The principal replied, “oh but that will change after next year”.

Here we are, a year and a half later and I sit and watch Alyssa playing with her cousins while Courtney climbs on the piano, dumps cans of pop, chew on a dirty sponge and lick every toy in sight. As much as I had hoped that day the principal was going to be right, her tone and certainly got to me. Maybe because I’m a special educator myself and I know it’s not that easy. I wanted to believe that Courtney would become more social after being part of a blended class.

The girls and I spend every Thursday night at my parent’s house where my sister and her family also live. Alyssa and her two cousins were dancing to some video on tv. Courtney was wondering around and stopped by them. She was fascinated by the music and what was on tv. I know the tv is what is what she was gravitating towards and not her sister and cousins, but I took a moment to enjoy seeing her “with” them. For a moment she looked like she was joining in. For a moment, the four of them were “playing” together.

There was another beautiful moment last night too. Not sure why and the why doesn’t matter, but Courtney was very cuddly with my sister, her godmother. And it wasn’t just a one time thing. All evening she kept seeking my sister out. Courtney can get cuddly with adults if she’s in the right mood and if you are giving her squeezes and tickles. What made my night though was watching how it lit up my sister’s face.

As Alyssa bonds more and more with her cousins, it becomes harder to watch Courtney not have that bond. It becomes harder to see her on her own. It becomes harder to see how disconnected she can be. But I have to remember to take a step back and celebrate the little steps we’ve made.