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.

With all that Courtney has been going through these past couple months, I’ve been asking myself a lot if she’s in too much therapy. This week it’s been on my mind even more because one of her private therapists recommended an additional hour a week if interested.

I decided to seek the advice of Courtney’s teacher and one of her therapists from school. There response was very thoughtful and helpful and pretty much what my gut was telling me. But something in the email got me emotional. I’m well aware of how many hours Courtney is in school and how many hours of therapy she has but her therapist put the total number of hours in her email response and for some reason it was hard to swallow. Between school and outside therapies, Courtney receives 47 hours of intervention. 47 hours!!! Most work weeks are 40 hours! Heck, most work weeks are just 5 days and she has something 7 days a week. What am I doing to my little girl?

Mother’s guilt hit me and hit me like a ton of bricks. It hit me so hard that I couldn’t even get the words out of my mouth without crying when asking my close friend at work, “am I harming Courtney”?

Of course I realize now that was an irrational question. Of course I’m not harming her. Huge thanks to my friend and co-worker who talked me off that ledge!!! Though I now ask, if I have it all prioritized for what is best for Courtney and my family.

Up until this point I had the mindset of get her all the help she needs. The more help the better. Courtney could benefit from intense ABA therapy. Sure, sign her up. Courtney could benefit from speech and feeding therapy. Sure, sign her up for both. The list goes on until suddenly your family’s life revolves around therapies.

Courtney’s therapist said something else the both got to me yet made me think. She said, “more isn’t always better”. Like you can say with most things in life, it’s not about the quantity of therapy but the quality of therapy. And not necessarily the quality of the therapy itself but is she getting anything out of it if she’s tired and stressed?

Since Courtney does not have the means to tell me if her schedule is too much, it’s left up to me to decide. How much can she handle? What are the therapies she needs the most? How much of each of these therapies would she benefit from? What can she handle and just as importantly, what amount is healthy for our family.

Did I really think we would never see these self inflicted bruises again? No. Did I think we would never relive the episodes of her screaming in pain? No. This is autism, this is our life. Though I was hopeful that it would be a while before we saw these moments again. I was hopeful we figured out the issue and if we stayed on top of it, we wouldn’t have to worry about these screaming in pain episodes for a while.

So on Wednesday when my cell phone rang during my lunch break and caller id said “nurse”, I couldn’t help but think, here we go again. I actually found myself wanting the nurse to say that Courtney was throwing up with the flu because I know how to help her through that. But that wasn’t what was going on. She was calling me because Courtney had been crying inconsolably for an hour, grabbing herself between the legs and biting herself. My heart sank, here we go again.

Her teacher and I exchanged emails that night that included her telling me not to panic, it just may just have been an off day. I try to let her words comfort me but my gut wasn’t feeling it. See, the night before she had an episode but I blamed it on a change in routine even though a change in routine typically doesn’t cause such an intense meltdown.

It wasn’t just an off day. The next night she had a pretty severe meltdown at bedtime that lead to a car ride where she finally cried herself to sleep. Then my phone rang again on Friday and again I saw it was the nurse. I could hear Courtney crying inconsolably in the background this time.

What is going on?! Her bowel movements are regular, can it really still be bowel spasms? In both cases this week when she was sent home, Courtney was happy as can be the rest of the day. Is this becoming an escape behavior?

Today we took the girls to a breakfast with Santa. Courtney was very whiny through most of the breakfast. Some tears and bit herself a couple times. It hit me, this confirms it, the episodes are definitely not her trying to get out of something. There’s a difference between the meltdowns. I knew it wasn’t possible that she would scream so hard with a stiff body and toes curling just to get out of something. That is not Courtney.

So back to talking to the doctors.

I have always had this dream to open up my own center for children with Autism. I’ve had this dream for many years, even way before having my own child with Autism. Through the years, what this center would look like has changed and became more just a dream and never anything I would actually do. Again, this was before I had Courtney.

Over the past few years the idea has started creeping up again to the point where I now think about it often. It’s gone from a dream to how can I make this happen. Now slow down a second…to my co-workers, this isn’t my resignation (not even close). To my husband, I realize we have hours, upon hours, upon hours of discussions on this that we need to have. This is more me saying that I want this to happen.

This still is at the “dream” stage but since it seems to be on my mind a lot, I’ve decided I want to start looking at what I would want in a center or even organization, what it would look like, and what would it take to make this happen. It’s time for me to see if my dream can become a reality at some point.

Courtney has taught me so much over these few years. As a parent, I am learning that there are resources that are needed for children on the spectrum. What I’ve learned even more is that there are resources is parents need. One thing that has helped me as a parent is finding others in a similar journey and becoming friends. I say all the time though that it’s parents of children with special needs who need that bonding time with others like them but it’s these parents that have the least amount of time to make that work. Recently this has become where I would start with a center/organization. So much out there is geared towards the child. How can I help the parents? Happy mom means happy family, right?

Again, this is just me stating it’s time for me to stop thinking this has a dream but more as a goal. This is me continuing to fight for not only Courtney but other families on a similar journey.

As a teacher of children with Autism, I have always worked hard and teaching my students to sit during snack and lunch time and to sit through the entire meal. So often, parents have shared their frustrations with meal times and how their chid is a grazer. I’ll admit, during my beginning years where I was not a parent myself, there was some quiet judging. How do you not make your child sit at the table to eat? Years under my belt teaching little ones with autism quickly showed me its easier said than done.

So when I became a parent of a child with autism, I decided it was important to me that she not be a grazer and sit at the table during meal times. Ha! That’s funny! Wow, have I failed with that goal! My goal now during meal time is her to eat. Just eat. And preferably more than a fruit pouch, milk, animal crackers and a slim Jim. Oh…and I gave up them sitting at the table a long time ago. I noticed early on that Courtney prefers sitting high up. We could get her to sit longer when on a stool at the counter than we could in a chair at the table. So, we eat at the counter.

Since them both eating at the same time at the counter rarely happens and when it does it’s quick, I pretty much always snap a picture when it does. Here’s the best part…not only are they sitting at the counter, eating a meal at the same time, they are actually eating the same meal!!!!

There was a downside to this beautiful moment. They weren’t actually served the same meal. Alyssa was eating pizza and Courtney was eating a hot dog. Courtney started refusing pizza several months ago. We recently went completely dairy free for her. Tonight she decided she wanted pizza and stole a piece off of Alyssa’s plate. I quickly ripped the cheese off the piece And then gave her some more pizza without cheese. When the meal was over, I realized the pre-made crust had dairy in it. I was hard on myself for a few minutes about not checking the package. Then I realized, if I had, the awesome moment of them enjoying a meal together probably wouldn’t have happened. Now time to find a pizza crust safe for both my girls.