Sometimes there are days where I blame everything on autism. Not Courtney, she can’t help that she has autism. I blame it on autism. There are just those days where I need something to blame for so many things and on those really bad days I am able to find it all falls on autism.

I have blamed autism for arguments between joe and I. I have blamed autism for my constant feeling of exhaustion. I have blamed autism for feeling burnt out as a teacher. I’ve blamed autism for my inability to organize the house. Heck, I’ve found ways to blame autism for my hang nails!

This week has been one of those weeks where I have found myself blaming autism for things that just happen at no fault of anything at all. This has done nothing but leave me hating autism instead of embracing it. It has left me mad at myself for hating it.I don’t want to hate autism. Autism doesn’t need to be a bad thing. Because autism is this beautiful little girl with big blue eyes that are absolute daggers when you look at them. Autism is a belly laugh that is so contagious you can’t help but join in. Autism is filled with little moments that cause huge celebrations.

So Autism, you may be tough, you may challenge me and I may blame you for a lot of things, but know that will always see the beauty you brought to our family.

Time to attempt potty training again. We just have one major obstacle. She’s afraid of bathrooms. Bathrooms have toilets that flush, water that runs, some have loud hand dryers the list goes on. So right now we are learning to like bathrooms. Today her therapist sent me this picture! Needed some intiskmg and Mr. Penguin’s moral support but she sat on the toilet with the top down.

When going through her urinary tract and constipation issues last fall, one of her doctors was apologetic when telling me he recommended a long break in potty training because most parents would be more than anxious at this point to have their child out of diapers. Do I want her out of diapers? OF COURSE!!! But shortly after she was diagnosed with autism I knew one thing that meant is potty tracing could be a never ending battle. Fingers are crossed we get there but also not going to let myself get disappointed.

I’ve been asked a few times about Courtney’s headphones. I’ve been asked why she wears them, what music is she listening to, and how do we feel about them.

To answer one question, unless you see a chord attached to them, she isn’t listening to anything. They are not wireless. Sometimes they are plugged into her iPad but most often the chord isn’t attached and they are just covering her ears.

So, why she is wearing them? Courtney has always been sensitive to noise but only louder noises like vacuum cleaners, hair dryers, blenders and such. It was a sensitivity that for the most part was manageable. Over time she has learned to cover her ears or go to another room. The hardest noise has always been the vacuum cleaner but we’ve just learned to vacuum when she’s not home. She’s also not a fan of Alyssa’s whining or crying. (Sometimes I don’t blame her.) A few months ago we noticed her covering her ears more and more. As i watched it increase, I decided it was time to try the common strategy that is out there….headphones. Her OT recommended just regular headphones versus noise canceling ones so that’s what I did. I was honestly surprised how fast she took to them.

There was something else I started to notice. She wasn’t just covering her ears because of noise, she was covering them when she was anxious, In fact, I think it’s more about anxiety than noise. She was covering her ears all the time. She was covering her ears during transitions, during new activities, during tasks that were hard.

This leads me to how I feel about the headphones. In some ways it breaks my heart to see her covering her ears with her hands so often because it was her telling me she was anxious and who enjoys seeing their child anxious. There are times when I put the headphones on you can just see her body relax. Something about the ears being covered and some added pressure on the head relaxes her. If a pair of pink headphones is going to help her through new activities, large crowds, new places, why not let her wear them? So how do I feel about them? They are game changers and I love them!

I asked my husband how he felt about them. He too said that he is fine with them since they help her but he also said he worries that it makes her look different. I love this quote in this meme. It’s not that Courtney looks different, it’s that the world sees it as different so instead of making her uncomfortable, let’s teach the world to help those like Courtney feel comfortable.

At the beginning of summer school my father-in-law got Courtney off the bus and noticed most of the students had headphones on. He shared this to me. He now feels bad that he said this to me because he feels it is what made me try them with her. That is not the case at all. And if it was, I hope instead he can look at it as that it’s a good thing that he helped find his granddaughter a way to cope.

Note to other parents…let me know if you would like the link to these headphones. I like that the chord detaches from the headphones when you don’t have the attached to a device!

3 years ago I wrote about how nervous I was about traveling to Colorado as a family. I was nervous about how Courtney was going to handle the flight, the wedding we were going to, the hotel room. I was so nervous that we almost stayed home.

At the beginning of our autism journey, Joe and I vowed that we would not let autism deter us from doing things like take vacations and so far we have stuck to it.

Traveling with kids special needs or not is hard but when you add autism to the mix, it changes things. The list of things you have to worry about multiplies. The change in routine during your vacation, the size of crowd during different activities, food, public bathrooms (I really need to do a blog just on how inaccessible public bathrooms are to older kids in diapers), sleeping arrangements, how will I calm her during meltdowns, ways to meet sensory needs, how accessible are the different places to strollers and the list goes on.

It would be so much easier to just skip vacations all together but that isn’t fair to Alyssa nor is it fair to Courtney. So we take choose to take the chance.

I post our pictures from vacation on social media and like everyone, the pictures show the highlights that make it look like a seamless trip. I don’t include the scars on Joe, Alyssa’s and my arms from Courtney’s aggressive meltdowns. I don’t share the tears that I shed as I struggle with the extra stress traveling can cause. I don’t talk about the stares we get as Courtney walks around all day with headphones on.

What I do share are the pictures that remind us why we keep doing this. The pictures that show that with every rough moment on the vacation there is a memorable moment that keeps us going.

Our most recent trip was to Mackinac Island. I got a great picture of the girls and I while on the ferry to the island. I sent the picture to my parents and my dad replied back to look at that picture if there are any rough moments. He was spot on. Those are the moments that keep me going because there were rough moments. We took them on a bike ride and they both sat in a carriage that I pulled. Poor Alyssa got attacked as Courtney got frustrated. We had to leave a cocktail hour early because Courtney was attacking me because she couldn’t handle the crowd. She became more and more dependent on her headphones during the trip. I can honestly tell you we won’t remember those moments though. what we will remember is watching Courtney conquer her fear of playing in a big pool. I will remember the waitresses becoming our friends, I will remember the girls loving playing by the fountain. I will remember how fun it was to coordinate our dresses as we dressed up for dinner.

I sent the following text to my good friend before we even got to the island…

Trying to remain positive but I can see this being our last trip to Mackinac Island for a while. Courtney’s anxiety may do us in and we aren’t even there.

She replied back…

Try not to look to far into the future, a lot can happen in a year.

Mary, you are right. I love how my village reminds me to stay positive. We will be going back and we will be taking more vacations because like always, we managed to have a beautiful vacation.

Courtney has a very strong love/hate relationship with water. She is one who can spot water of any kind a mile away. A puddle of water, a pond, a cup of water…she will find it and will want to find a way to play with it or in it.

On the flip side, she hates water. Actually, it’s more a fear. She can not handle the sound of running water at all! I can’t even begin to tell you how difficult bathroom are. She even hates baths because there is a faucet that could potentially be turned on. Fortunately bath time has improved. Her therapists are helping us with her washing her hands because that involves running water.

As much as Courtney loves to play in water, she can only handle it if the water is below her knees. Anything above the knees, her heart starts beating out of her chest and she’s forms a death grip on the adult next to her. It breaks my heart to see this fear knowing she loves the water so much. I would do anything to help her conquer this fear.

The running water is because of her noise sensitivity and we are finding ways to work with that. The fear of water above her knees? We are pretty sure it has something to do with the loss of control she feels when her feet can’t touch the ground. We can even hold her in the water. She struggles with swings for the same reason. Her feet are not grounded. The girl can climb all heights but when she loses that sense of gravity because her feet aren’t grounded, forget it!

A couple years ago we had Courtney in Aqua Therapy. There are so many benefits to Aqua therapy. I so badly wanted it to be a positive experience for her. Session after session we hoped she would suddenly start liking it but it never happened. I keep hoping to go back to it. I’ll watch her enjoy a baby pool or zero depth pool and think maybe just maybe we can get to enjoy bigger pools and aqua therapy but then when we visit a big pool my hopes fade.

Of course we can spend plenty of time at a place with baby pools or zero depth pools but then you stay at a hotel with a beautiful big pool and no baby pool. Her little sister loving every moment of being in it but all Courtney can handle is pacing as her heart races. Well that’s how the first trip to the pool at The Grand Hotel went. Day 2 there was progress. We went down to the pool as a family of 4 with all sorts of back up plans so both girls can enjoy the hour. Joe was prepared to swim with Alyssa and I was prepared to run in the open area with Courtney. It ended up Courtney was completely content pacing around the pool. While pacing, she started going to the steps of the pool and tipping her toe in. Each trip to the steps she seemed more at ease. Eventually she even got 3 steps in! She then even enjoyed sitting at the edge of the hot tub with Joe!

I think the huge baby steps is why I’ve always enjoyed working with children with autism. Those small baby steps just feel so big and so rewarding. 3 steps and feet dangling is huge and I will celebrate it!

While hanging out at my parent’s house a while back, Courtney asked to go outside in the backyard. Because of all the rain, the backyard was muddy and all I can picture was Courtney (my little Peppa Pig) being covered in mud from head to toe so I said no. My dad, her grandpa, was near her when I said no. She did not like my answer nor did she like that Grandpa was holding the sliding door shut so she lunged toward him to attack him in anger. My dad, who has been attacked by his little granddaughter before, asked me curiously, “so what happens when she’s older and stronger?”

Good question, Dad. I only wish I knew. What I can say is it is something I think about daily. I don’t just think about it, I worry about it. I’ve actually asked a similar question as a teacher in regards to some of my students who have aggressive tendencies. Since I was only their preschool teacher they would move on so I wouldn’t worry too much. I have to worry with Courtney though.

There is something about a child with autism having a meltdown. Their strength becomes unimaginable. Their fight or flight kicks in and suddenly they are as strong as a bull. Now imagine that child an adult! This scares me.

Fortunately the frequency of her aggressive tendencies isn’t out of control but it is frequent enough that it happens daily wether it’s towards someone or herself. It happens frequent enough that i actually get nervous when she is interacting with someone in close proximity because it can happen out of nowhere. It happens frequent enough that instead of trying to get her to get in a group picture at a kids party, I choose to not bother because it’s bound to end with her pinching someone. It happens frequent enough that when a new doctor, educator or therapist asks me to describe Courtney I make sure to share that she can be aggressive. It happens frequent enough that I worry about if friends and family will grow to fear being near her as she gets older and stronger.

I struggle the most when Courtney hurts another child. She recently pinched another child at my nieces birthday party. The parent of this child knows Courtney and her struggles so she explained to her daughter that Courtney didn’t do it to be mean. The mom made the comment that it’s so hard to explain that to a young child. Right there is why I struggle with it. The next day Courtney bit her cousin because I took a piece of candy from her. I could see in my nieces eyes how hard she was trying to hold in the tears and act brave. I was so proud of how brave she was being but felt horrible that she felt she had to hold in how much it hurt. My sister and I both shedded some brief tears later when I asked how my niece was. She shared that she was scared but also sad that her cousin couldn’t talk.

I realize that this point in the game I’m only driving myself crazy for worrying about this all now because if there is one certain thing about autism it’s that there is no way to predict the future when they are young.

At this point I have to take comfort in knowing that we are doing all we can to make sure these behaviors improve. I have to take comfort in knowing that those who truly care for my family understand that Courtney acts out because of her inability to communicate. I have to take comfort in knowing that these same people will continue to love and support her throughout this bumpy journey. Through the ups and downs, the laughs and the tears, the celebrations and the frustrations. Because this is autism.

(The photo is of Courtney with her Great Aunt. We watched this beautiful moment with caution hoping it stayed beautiful, which it did. Not surprised my amazing aunt can such a beautiful moment with her.)

Let’s talk about parent shaming. I apologize ahead of time if my blog becomes rated PG but a recent Facebook post in a neighborhood group struck me the wrong way.

I at first wasn’t going to blog about my feelings on what she posted because my blog is not private and wasn’t sure if I wanted it to get back to her some how. Someone could easily say I should just scroll on and not let it bother me. But then it hit me, if posts like the one i saw are still out there then a lot of education still needs to be done so my public response needs to be made.

Someone posted in a Facebook group that they saw a family out at a restaurant on Father’s Day and a young child in this group was on their tablet completely engaged in rather than their family. As a teacher she did a public service announcement of how much harm screen time has on a child’s development. This poster completely shamed this family whom she didn’t know. My first thought was, “yikes, she would have a field day with my family.”

Now before people go ape shit on me, yes, I completely know and understand the harm that too much screen time has on a child’s brain. I am not arguing that.

Let me take a step back and just talk about what a meal out entails. A meal out means a new, different or out of routine place (unless you go there regularly). At a restaurant there is extra noise including people you don’t know talking, utensils scraping against plates, people slurping drinks through straws. Restaurants have different lighting maybe even lightbulbs that are buzzing. There are a numerous amount of smells. There are “rules” to be followed at restaurants. Rules that are different from home. Now imagine you are someone who has sensitive ears and you hear the noise of a fork scraping on a plate. Imagine you have a sensitive nose and you are at a restaurant that serves curry or something strong smelling. Imagine needing a strict routine and your food takes longer to come out than usual. Now, imagine it’s Father’s Day and your family wants to take your dad out to a restaurant and the only way you can celebrate it with your father is by some how getting your child with one or all the above sensitivities to this restaurant. But wait, there is a way you can make it work. You can give your child a tablet. The other choice is staying home.

What is dinner out with Courtney like? We go out to the same restaurant almost every Saturday with Joe’s family. The same amazing waiter waits on us every time. If you were another costumer at this restaurant you would see her at almost 6 years old sitting in a high chair. There is a strong chance you will see her socks and shoes under the high chair. In the diaper bag that still carries her diapers is food and milk brought from home. Milk in a straw cup made for toddlers. Within 5 minutes of sitting down, without asking, the waiter will bring out a plate of fries and put them right in front of her. And yes, you will see am Ipad in front of her. What you will also see is a family enjoying a meal out together. You will see me actually sitting and enjoying a meal instead of inhaling a meal while standing at a kitchen counter. If it’s an occasion where Joe’s sister and family joined us you will get to see Alyssa enjoying time with her cousins. All of this is possible because we are letting Courtney have the iPad. Yes, we can work on taking it away and maybe sometime we will but this poor child is in school and therapy just as long if not longer than a typical work week. I think she earns a time where she doesn’t have to “work” on something.

So back to this Facebook post that caused me to rant. I know what some are saying. Yes, parents of “typical” children do this too and the person who post this comment very well could have seen a “typical” child on their tablet. My answer to that is to each their own and mind your own business.

So the next time you are out at a restaurant and you see a child on a tablet, before you blame the parents, ask yourself if you know their story. And if you are pretty sure it’s a “typical” child then just be thankful that they aren’t disrupting your meal.

Thank you for allowing me to vent. Goodnight, I’m going to continue to try to put Courtney to bed with the help of an iPad 😉.

After the ceremony of my college graduation, I hugged my parents with tears streaming down my face. While hugging my dad he said, “we did it.” School was so difficult for me and I always needed so much help from my parents along the way. So when he said, “we did it”, I knew exactly what he meant and he was right, “WE did it”.

Well, Courtney, we did it. We got through your preschool experience!

It was such a growing experience for our whole family. Starting from the district being the first one to officially say Courtney had autism. I found it ironic that her last day of preschool was exactly 3 years to the date after the day we took her to the preschool to be evaluated. The process that officially changed our lives forever. Not only has Courtney grown in so many ways during her 3 years at preschool, our whole family has grown.

For me, Courtney’s preschool years taught me what it is like to be on the other side. I’ve been a teacher of children with autism for several years. Having a child with autism in preschool gave me even more compassion for the parents of my students. It gave me so much insight on what they are going through. I have grown so much as a teacher. Courtney’s preschool years taught me how to be an advocate. I didn’t realize how strong I was until she started school.

The biggest growth of course was in Courtney. Three years ago, we walked her into that school with her unable to do so much. Unable to do so much, unable to communicate, unable to understand what we wanted of her.  This little ball of energy with so much stuck inside her and no way to get it out. Three years later, she is still a little ball of energy but she has found ways to show us just how smart she is. The school has helped us give her a functional way to communicate her wants and needs. They have helped teach her how to be a part of  a group. She is now able to imitate her peers and even play next to them. These past 3 years have brought us tears, laughter, frustration and excitement. There have been many scratches, bites, pinches, hits and meltdowns. There have been moments where I’ve wanted to scream and moments of huge celebrations.

It takes a village to raise a child and when it comes to raising a child with special needs, that village needs to be large, it needs to be strong, it needs to be ready to put up with the good and the bad. We will forever be grateful for the village we found at Courtney’s preschool. They have been such a huge part of her growth these past three years. I wasn’t prepared for how hard this transition was going to be because my family will have to start all over with building trust with a team. But, that is exactly how I felt three years ago today and look where we are now.

To the team at Courtney’s school, thank you from the bottom of our hearts for taking such good care of our little girl and helping her grow. Courtney, I couldn’t be more proud of you. We did it!!!

This is the look of sensory overload. This is the look when a simple beep goes off when the front door opens up. This is the look when the ice dispenser is being used. This is the look when a lawn mower is being used outside even though you are inside. This is the look when the cousins are over and making a lot of noises. This is the look when it’s raining during horse therapy. Actually, this is the look we got when the rain was beating loudly on the car.

This is the look we’ve been seeing more this past week as it appears Courtney is going through a phase of being extra sensitive to noises. Courtney has always been sensitive to certain noises such as vacuum cleaners, blenders, hair dryers, her sister’s whining (she’s not a lone on that one). This week it’s exasperated. Little noises that never bother her are causing her to immediately cover her ears. Sometimes her covering her ears is all she does but sometimes the noise also causes her anxiety to go up. She starts sounding and looking distressed. Sometimes the moment is quick but sometimes it heightens her anxiety for several minutes or even longer.

The other day three of her cousins were over. I had not gotten home from work so I did not see it happened but apparently Courtney got overstimulated by the noise they were making. She usually can handle this. This time she couldn’t. She eventually hid down in the basement in a corner to escape the noise. Fortunately this calmed her down. When I got home a little later, although calm, I could see in her eyes that she was still trying to recover from all the stimulation.

Today was the worse meltdown do to noise that I’ve seen from Courtney. Storms rolled in while we were at horse therapy. This made it very loud in the barn. It was loud for me and I don’t have sensory issues. She started crying hard and covering her ears. She wanted me to cover ears but also didn’t want us to touch her. She was in full blown sensory over load. We finally ended therapy early. The hardest part to watch was how her sensory system was so heighten after this that it took the rest of the afternoon and evening for her to truly recover.

Today autism won. Today it paralyzed her. Today autism determined our day. Today autism was hard on all but we powered through because this is autism.

My younger sister and I were so excited to have children that were around the same age. We couldn’t wait for them to grow up together as best of friends. So as our 4 children have gotten older and their bonds continue to form, it has been difficult to watch Courtney not bond with her two children like I imagined she would. Don’t get me wrong, there is a bond and a bond that I cherish, but the bond is just different.

Twice a week we visit with them for a little bit. We’ve been doing this since Courtney was born. Twice a week I watch Alyssa play with her two cousins while I watch Courtney play by herself in another room. We work on encouraging them to play with each other but of course, Courtney is always more content playing on her own. It is absolutely beautiful to watch the relationship Alyssa is forming with her two cousins. She wants to do everything they are doing. She is like that annoying little sister trying to get into everything they do. You see her cousins loving having her around at one minute and then wanting her to leave them alone the next moment. Seriously, it’s the love/hate relationship we wanted. Just like siblings. As for their relationship with Courtney? They love her, you can tell they do. They watch out for her and they let me know when she’s doing something she shouldn’t.

As of recent, her two cousins, L and R have been asking me more questions about Courtney. The biggest one being “why doesn’t she talk?” There was also a time recently where Courtney had a pretty bad meltdown while at their house. I wasn’t there but apparently L was pretty scared by it and not understanding why she was so upset. It broke my hearing that Courtney’s behaviors scared him.

This week we were over at their house like always. Alyssa, L and R were dancing and Courtney just happened to be near them. Alyssa grabbed Courtney’s hand to get her to dance. Courtney loves the touch of other children’s hands. The engagement looked normal and beautiful. Alyssa moves on but Courtney wanted to touch more hands so she grabbed L’s hands. In typical little boy style he got put off because he was being touched by a girl. We explained to him that Courtney likes the feel of hands. Later outside, Courtney actually sat down next to L and grabbed his hand again. You can tell he was uneasy about it but then my dad and I explained why she was doing it. I told him that she likes when people gently scratch her hands. L then let her play with his hands. It was beautiful to see the bond happen. This moment also showed me that it was time to really teach her cousins about autism,