#25daysofautism

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!

Our house consists of a high school history teacher, a special education teacher, a second grader with autism and a kindergartner with anxiety and severe food allergies. This time of year brings so much excitement, anxiety, and every other emotion between the four of us.

Let’s start with my husband, the high school teacher. The one who is usually most excited about going back to school. The one who says that he has been doing this so long he can do it in his sleep. He’s had his fun this summer and now he’s ready to return. I wish I could be that calm!

Now for Courtney. Believe it or not, she’s the one I’m least worried about going into this school year. She has the same teacher she has had for two years now. The teacher who got her through Covid. I’ve grown to love her team. I’m sure there will be some bumps in road during the year, I’m just not worried about her as the year starts.

I return to school first out of all of us. It’s been a hard summer so part of me is ready to get back to school. I do worry about all the unknown with COVID still hanging over our heads. I always have nerves going into a new year but I’m used to these nerves,

Then there’s Alyssa. Here is where all of my anxiety lies as the school year begins. My anxiety as she starts this big year is very high. It’s a new school for all of us! A new teacher! The first time going to school all day! The first time she is going to eat food with someone besides a caregiver. Oh and let’s not forget the emotions of my little baby going to kindergarten! Yep, I’m a mess!

As an allergy mom, I do worry about her eating with so many other foods near her that she could possibly be allergic to. She is so responsible and has become quite the self advocate so I need to trust it will be fine, but this scares me.

Alyssa had a difficult summer and though I feel school will help this, I do worry about how she will adapt to this big transition. Will teachers see the same behaviors? Will she need additional support? Will the be understanding of the home environment that she comes from? Like I said…I’m a mess!

In case 4 of us going back to school wasn’t enough to prepare for, we are also starting with a new nanny. Alyssa struggles with separation anxiety so this adds to some of the behaviors we’ve been seeing. We have done trial runs with our new nanny and Alyssa struggled. Good news is, we didn’t scare the nanny away yet.

It was a tough summer. but we were able to make some fun memories too. The next few months bring on a lot of big transitions but we’ve gotten through tougher.

Here’s to a happy and healthy new school year!

#25daysofautism

Day 8 – meeting a milestone

Milestones…a word used often during early development of children. A word that starts to haunt you as a parent of a child with special needs. A word I really had to come to terms with as I accepted Courtney’s diagnosis of autism.

I had to learn how to accept that children Courtney’s age were going to reach milestones while she didn’t: I had to learn that she will need her own set of milestones with their own timelines. I had to learn that in the end it seriously doesn’t matter when she met them as long as she was happy, healthy and progressing.

Today’s picture challenge is to show a picture of your child meeting a milestone. Since a child’s first words is a big milestone, I decided to share a picture of Courtney saying her first “word”. Was it at the time she was supposed to? No. Was it verbally? No. Did she meet a milestone? YES it just looked different and boy were we proud of her!!!

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Day 7: a picture at the age of 1

When I was looking for a photo of when she turned 1 I realized that this too was a very difficult time. Though looking back part of why it was hard I can now look back and say that was nothing!

Courtney was diagnosed with torticollis (aka.,,stiff neck) as a newborn. This caused her to have plagiocephaly (flat head). She ended up needing to wear a helmet to correct her head shape. Back then I found this period of time very stressful. Now I laugh at finding that stressful!

It was also a very difficult time because just 2 weeks before her 1st birthday I had a miscarriage at 12 weeks. The first birthday is supposed to be a big celebration but I was in a dark place.

But back to these pictures. What a beautiful little girl. Those blue eyes are just daggers! Her helmet just added to her adorable look. I had so much fun putting little bows on the helmet to match her outfit.

At the age of 1 she was already a very picky eater, still not sleeping through the night, walking all over the place and babbling all of the time. When she was 1 I was just an autism teacher.