I haven’t posted about horse therapy in a while partly because Courtney has been going through a rough patch with it. It started a few months back when she would start crying in the car as we got closer to the stables. We didn’t take it as a sign to stop therapy because once at the stables she would seem happy. Yet she wasn’t all that happy once she got on the horse. We also did t want to stop therapy because Alyssa and I truly enjoy our time with the horses.

Ms. Christine and I were determined to figure out what changed for Courtney. Was it the change from bareback riding to riding with a saddle? Was it riding inside versus outside? Did something spook her?

After testing out a couple different theories, we finally came to the conclusion that it was the helmet. But why? Then it dawned on me. This aversion to the helmet started around the same time she became very dependent on her headphones. It’s gotten better but when you take Courtney’s headphones off, her hands immediately cover ears and you can sense her anxiety increase. So of course it made sense that horse therapy was starting to be stressful. When it was time to ride, we ripped her security blanket from her. Makes complete sense!

We have been working on her decreasing the wear of the headphones. We don’t want to make her uncomfortable so we are doing it delicately and definitely not keeping them from her. But there are going to be times where she may need to take them off so we are working on it.

Today’s therapy session was fantastic. She tolerated us removing the headphones and putting the helmet on. And…there were smiles while riding the horse again. I was so excited to see that smile. So glad we stuck it out. Just another reminder how behaviors are a form of communication. There is a reason for every behavior. Sometimes it’s hard to find the reason, but taking that time can pay off!

“Aware is halfway there.” I heard this in a workshop today and it resonated with me as a mom of a daughter with autism. Awareness of Autism is huge and I am so glad awareness is being spread daily. But now as the CDC shows that it is now 1 of 49 children have autism, it’s hard not to be aware of it? It is so much more than being aware though. Aware is halfway there. The bigger question is, are you accepting Autism and all that it entails?

What do I mean by accepting Autism? It means not judging when you see a child melting down in a store and maybe even taking a moment to understand what could be causing the meltdown. If you are really brave, even seeing if you can assist the parent. It means understanding that some will have a hard time waiting their turn in a line, being quiet in a movie theatre, or need to wear accessories like chewies and headphones all the time.

As most know, Courtney wears adorable pink headphones ALL THE TIME. They help her with not only noises that she is sensitive to but also managing her anxiety. I swear she has been happier in general since starting to wear them. Though we are trying to find ways for her to cope without them too because we don’t want her to become even more sensitive to noises. I’ve talked a lot about these headphones so you are probably well AWARE of whey she wears them so going to leave it at that. My question is…what were your first thoughts when seeing her school picture? It is very much ok if you first thought, “why didn’t school take the headphones off”. I don’t blame you! Her dad and I both did. But honestly, that is the acceptance part. I think part of reaching the accepting Autism part is being able to look past the differences and accept them for who they are. Courtney wears headphones, that is who she is. As my cousin said to me in a text, that is her accessory. Some wear rubber bands to keep their hair back, some wear glasses to see, some wear hearing aides to hear. Courtney wears headphones to be regulated. I needed a minute when I first saw the picture, but then I saw the picture as it was. A beautiful picture of my little girl! Sitting still, smiling and happy! What more can I ask for?

And that, folks, is acceptance!

I have the app, Time Hop, on my phone. It’s an app that is synced with your photos, facebook and other social media. It pulls up all photos or posts that you made on a certain day. So you get to relive all the ups and downs that ever happened on a specific date. It’s a good thing and a bad thing to have this app. I get to relive my favorite moments with family and friends and I relive some of my lowest days as I went through my divorce and other tough days. I love looking at old pictures the girls when they were so little and the things they use to do that made us laugh or cry. But occasionally a picture of Courtney comes up like the ones I shared above that make me both smile and cry. (Side note…Kelly, if you are reading this, you always do such an amazing job capturing pictures of the girls!) I smile because honestly, how beautiful is that face? And those eyes!!!! They are daggers!!! But why do I want to cry when I see this picture?

I’ve talked about it before, but Courtney was developing right on track and then started to regress sometime between the age of 1 and 2 years old. It was so hard to watch. As I have mentioned in previous posts, I feel pictures from that time are just so telling. I see pictures from before the regression where she looks so connected with our world and then pictures like the ones above where she is no where to be found in those beautiful eyes. In these pictures you can almost see how they are looking right past you and not connecting with you. My sister Kelly (also known as my amazing photographer), another family member and I were chatting not too long ago about when I really knew Courtney had autism. I explained how I can tell the timeline just looking at old pictures of her. My “photographer” said she can too.

The memory these pictures also triggered is the health issues we were dealing with around the time these pictures were taken. The fall of when she turned two, Courtney went through this horrible phase that I often describe as very similar to when she was a colicky infant. On and off moments of unconsolable crying. I remember my dad calling me at school saying that my mom just couldn’t comfort her. I broke down into tears asking, “what is wrong with my little girl?” I was already noticing red flags at this point but this is where it became evident as whatever skills she hadn’t lost yet disappeared.

As these pictures appear in my “time hop”, I’ll have a moment, but then I think about where she is now. I look at recent pictures and see how happy she is and think about the progress she has made over the past 4 years. I am so incredibly proud of every little step she has made. Those eyes are still daggers and sometimes they still stare right through you as if she doesn’t even notice you are there. But when those big blue eyes do connect with you, watch out, your heart will melt. Yes, these pictures are so telling. They tell me about the ups and downs we have gone through in this journey. But most of all, they remind me of the beautiful, strong, little girl that I’m lucky to have as my daughter.

Six years ago today, this beautiful blue eyed bundle of joy entered our lives and made us parents.

A Winnie the Pooh drawing (painted by her Grandma Beej) hangs in the room that was hers (now Alyssa’s) when she was a baby. “As soon as I met you, I knew am adventure was about to happen.” Six years ago we didn’t have the slightest clue of what that adventure was going to look like, but we knew we would love her unconditionally through it.

We have gotten a lot of bumps and bruises along the way on her adventure but it has also been filled with so much fun and laughter. Her progress through her adventures have been amazing and I couldn’t be prouder.

People say Courtney is lucky to have me as a mom. The truth is, I’m lucky to have her as my daughter. She has taught me so much in just 6 years! What an adventure it has been and I wouldn’t trade it for the world!

Happy Birthday, my sweet Courtney! Love you to pieces!

Received this text the other day from Courtney’s Papa…

Courtney came home in meltdown mode. Driver said only started as she was stopping at your house. Nothing on school note to suggest anything wrong. Held crotch area during crying – not wet and no poop. Quieting down a little now, but starts crying off and on for no apparent reason. Sending this text since it is Friday afternoon!

Those who have followed our journey may understand why my first thought when receiving this text was a very anxious, NO, NOT AGAIN!

Rewind almost exactly a year ago. Almost to the exact weekend! Ironic, right?! Courtney started having horrible meltdowns that consisted of inconsolable screaming, self injurious behaviors, and grabbing herself in the crotch area. Literally nothing worked to calm her down. We saw these episodes on and off for months. She missed lots of school, I missed lots of work, we all cried lots of tears. After several tests including multiple urinalysis, abdominal X-rays, and blood work it was concluded she was severely backed up. Those 4 months were traumatizing.

Recently I was listening to a podcast (@adventuresinautismpod) where an autism mom talked about the tough summer they had because of behaviors that her son started to exhibit. She commented that it felt like she was recovering from a trauma. I took a moment to respond to the podcast that as someone who has survived a near death experience, I can easily say there are events with Courtney that are just as hard to emotionally recover from. The feeling I felt Friday when I received the text from my father-in-law proved that.

The end of the text said “texting this because it’s Friday afternoon”. Meaning, just in case you want to call the dr before the weekend. That’s exactly what I did. This time around we are going to stop it before it gets as bad. This time will be different. We will not relive last fall.

Well…as suspected, it’s a combination of constipation and a UTI. We will not let this get us down though. It is only making me more determined to find ways to help her chronic issue with constipation.

On a positive note…kindergarten is off to a great start! Let’s just hope this doesn’t change that.

My little girl is a kindergartner. Where does the time go? Such a scary, emotional and exciting time for all parents. Some are being sent to school for the first time, some are going to school all day for the first. For most, it’s a new building, new teacher, new friends, new rules. Some may be lucky to have a sibling, relative or friend already there. Some of the children will be excited for this journey some will be scared. As parents, you just hope you’ve given them the tools to navigate it all.

I have no idea how Courtney feels about this big transition. I do know I’m scared as all hell. I’m sending my little girl who doesn’t have a voice, who is still so dependent on an adult to function in all environments and hurts herself or others when frustrated on this new adventure.

Will other children stare at her as she walks around with her ears covered? Will they become scared of her if they see her bite? Will they make fun of her still being in diapers? Will this school accept and love her for who she is?

Today the school held a New Family Welcome meeting. They invited to families like us to hear a short presentation about the school, get a tour and in Courtney’s case because of the brand new program, even get to meet the teacher. As soon as we arrived Courtney started to struggle. Joe and I knew there was not a chance that she would be able to sit for the brief presentation. A friendly face noticed Courtney struggling right a way. This friendly face was the principal. She knew us from the meeting they held with just the parents of the autism program earlier in the summer. She quickly greeted Courtney by name, though had never met her. Directed us to her classroom and let us know it was ok if we didn’t go to the gym for her presentation.

Courtney’s teacher and speech therapist then gave us a private tour of the building at Courtney’s pace. They let her wonder areas, touch things and go as slow as she needed to. They made us feel at home.

When leaving we had to make a stop at the office. By now Courtney was a little more relaxed. She wondered around the vestibule as Joe talked to the secretary. As I watched her touch the wall, I noticed the saying they had on it, “when you enter this loving school consider yourself one of the special members of this extraordinary family”.

A welcome sign on our lawn, a friendly principal greeting us at the door, a caring teacher and therapist…

This is not our home school. It is not the school Alyssa will be attending. It’s not the school the neighborhood kids will be attending. But today this school became our “home” school and we are excited to be part of the extraordinary family.

They say “love needs no words”. I know Courtney loves me, I don’t need to hear her say it. I know Courtney knows me, I don’t need to hear her say my name. But that doesn’t mean that I don’t have moments where all I want to hear is her say, “I love you”. Or hear her call me “mom”.

Her feeding therapist shared with me recently that she showed Courtney a picture of Joe and I and she was able to verbally label Joe as “dad”. She was very sensitive in telling me she couldn’t exactly say “mom”. So today I pulled up a picture I took of her, Joe and me. I pointed to her dad and sure enough, she said “da”. I smiled. I almost didn’t point to me because I didn’t want to feel that disappointment. I’m so glad I asked her! I pointed to me in the picture and asked her who it was, and the most beautiful sound came out of her mouth…”ma”! Tears of joy.

Love needs no words but it still is nice to hear certain ones!

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!