#25daysofautism

Day 18- – picture with a sibling

My very best friend in the world is my little sister. So when Courtney was born, I knew immediately I wanted her to have a little sister. I wanted her to have a sister to play dolls with, play school with and always be the teacher while her younger sister was the student, ride bikes with and all those other fun sister things. She has a little sister but their bond is quite different then I imagined.

Their bond is complicated but special. Most often they are happiest when they are no where near each other. Their sensory systems can’t always tolerate each other. They don’t play dolls together, they don’t play much together at all.

Then there are these moments. Moments where they rough house and Alyssa tickles Courtney until she is belly laughing. There are moments when Alyssa gives Courtney her hand to rub. Moments where Alyssa helps Courtney with something that is hard. Moments where you see they truly love each other. It is those moments where I stop and smile. Their bond may not look like the one I have with my sister but there is a bond and it is beautiful.

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Day 17: a picture in water

Courtney had a a strong love/hate relationship with water. It’s a relationship that baffles many. In some ways playing in water is her favorite thing in the world but in some ways water is her enemy.

She loves pools and beaches but it has to follow certain requirements. First, it has to have an ascending depths to it. Meaning it had to start at zero depth so she can slowly walk into it and feel where her feet are in the water. The moment it gets up to get waste, that’s it. She won’t go any further. Second, whatever you do, DO NOT PICK HER UP! If her feet come off the bottom of the pool she freaks out. She needs her feet grounded. This makes things like swim lessons and aqua therapy difficult. We’ve tried both and pretty sure it gave her PTSD. Third, the louder it is at a pool the less she will enjoy it. Even with her headphones. Indoor pools are VERY difficult for her for that reason. Forth, the hotter it is outside the less likely she will enjoy it. She takes after her mom. Fifth, keep it off her face. So, if all these requirements can be checked mark, you will find Courtney is happy as can be in the water! Baths are a whole different love/hate relationship.

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Day 16- when she was 3

Year 3…the year Courtney started preschool in a special needs class. The year she started with her talker. The year most of her therapies were put in place. The year her aggression started. The year I had to truly learn how to be her voice. The year we went from only family ever watching the girls to a nanny watching our girls. Yes, year 3 was a big year. She was diagnosed with autism just bevies her 3rd birthday so year 3 was the year our journey with autism truly took off.

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Day 15 (a day late)-a holiday picture

A dear friend of my family is married to, well, Santa Clause! Her and her husband have followed our journey and decided one Christmas that Courtney needed a special personal visit from Santa. “Mrs. Clause” even made a beautiful rainbow infinity scarf for Courtney!

A special visit we will always remember!

#25daysofautism

Day 14- a trait of autism

The trait of autism that probably stands out the most for Courtney is her sensitivity to noise. Severe anxiety goes along with it. The two of these things combined make it that Courtney wears headphones all waking hours:. She has them on from the moment she wakes up to the moment she falls asleep.

I have to say she sure looks adorable in them!

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Day 13-A picture with dad/father figure

When I think of the relationship between Courtney and her dad I can’t help but think of the poem, “Welcome to Holland” by Emily Perl Kingsley

Click to access welcome_to_holland.pdf

Joe struggled the most at the beginning with truly accepting that Courtney wasn’t meeting milestones like typical toddlers. In his eyes his little girl was doing everything she needed to do. His little girl was perfect. He had this vision of what his children would be like and anything different from that he wasn’t ready for. As the poem describes, he was imagining a trip to Italy but instead we were headed to Holland.

Oh has he found Holland to be just as beautiful as Italy if not more beautiful. Just look at the twinkle in his eyes as his little girl embraces him.

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Day 12- a picture of when she was 2

So much happened the year she was 2. She started early intervention. She became a big sister. She started therapies. We got her evaluated through our school district and got her a medical diagnosis of Autism. This was truly the year our autism journey started.

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Day 11-response to sibling/cousin/friend

I’m glad a sibling moment was a part of the challenge. The girls have struggled recently being on the same level of the house so looking at pictures it reminded me that there is a very special bond between them despite the fact that they can’t tolerate each other’s noises right now.

Alyssa came into this world before Courtney was officially diagnosed but at the point where I was pretty certain she had autism. Courtney was very much disconnected from those around her. So when Alyssa was born her reaction pretty much looked like she could care less that Alyssa existed. Except…Alyssa had one thing Courtney loved. Baby soft skin. To this day, Courtney loves touching Alyssa’s hands. The beautiful thing is, when Alyssa is in the right mood she will just let Courtney play with her hands.

Their bond is different but very special.

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Day 10: a picture on vacation

My husband and I decided early on that we wanted to do whatever possible to make sure autism didn’t stop us from family vacations. It hasn’t been easy but so far we are taking the vacations we have wanted to take wether we had a child with autism or not. With a lot of extra planning and going in expecting a lot of challenges, we have made some pretty special memories, even some magical memories!

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Day 9- feeding/Eating Success

I shared recently in a blog post that both of my girls are on feeding therapy. Here is a short backstory of why.

Courtney has been picky about eating since day 1. It’s one of those characteristics that I can say may have always been there but didn’t realize. She even had difficulties with breastfeeding. By the time she was 2 her diet consisted of about 7 food items. I remember taking her for her speech evaluation and her now feeding therapist asked if she was a picky eater. When I listed her items the therapist said, “she’s not a picky eater, she is considered a problem eater and she will qualify for speech services for that alone.”

Alyssa has not always been a picky eater. In fact, she used to eat whatever you put in front of her. That is until a bite of food put her into anaphylactic shock. Though this incident turned her into quite the self advocate, it took it to the extremes. I suddenly realized she was only eating a few items. The items she knew she could trust.

Courtney’s journey with food has been long and I’m guessing will always be a struggle. Every lick, touch or bite of a new food we celebrate! Alyssa has made huge strides with her fear of food since she started. Again, with every lick, touch or bite of a new food we celebrate!

Here are pictures of the both of them trying pancakes recently! Boy did we celebrate!