#25daysofautism

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!

#25daysofautism

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!!!

#25daysofautism

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.

#25daysofautism

Day 6: A picture of a hard time

We’ve had a few hard phases that stand out over the years. I spoke about one when talking about the signs of autism. I could even say this summer was a hard phase but more so with Alyssa than with Courtney. There is one hard phase that stands out the most.

Back in the fall of 2018 when Courtney just turned 5 we went through a phase of multiple UTI’s and extreme struggles with constipation. There was a lot of screaming as if she was in pain. A lot of doctor appointments. A lot of tests. A lot of tears and frustration from this mommy. I would get calls from school almost daily that she was having another episode. I was am awful phase.

The picture is when we took her to another specialist who finally gave us some answers.

I was so grateful for all those who helped us through that very difficult phase.

#25daysofautism

Day 5- signs of love and affection

It is said that that those with autism have a hard time showing affection. Today’s pictures prove that wrong.

Courtney can be very affectionate with others. Usually it’s on her own terms and if she doesn’t want to she won’t. But when she does, you feel it,

I have said so many times that love needs no words. Courtney has never verbally said, “I love you”. Yet she has told me she loves me in many other ways. She has showed her dad and her sister she loves them too.

“How do you spell love?” Asked Piglet.

“You don’t spell it, you feel it” said Pooh.

-Winnie the Pooh

#25daysofautism

Day 4: when you started seeing signs

I remember the phone call like it was yesterday. One day I was at work and my dad called me. Courtney was basically inconsolable. I broke down in tears and asked “what is wrong with my little girl, Dad?”

Courtney was just days away from turning 2. I was starting a new school year so Courtney was spending the days with either my parents or my in-laws. She was in a horrible phase. It was like we were living her colicky days all over again. All she did was cry. I would get her at the end of the day and grandparents would say the same thing every day…she was fussy.

There were 3 things that made her happy during this phase. Car rides, a walk in the stroller or being pushed in a swing. It’s funny that the swing calmed her then because she actually does not like swings anymore.

At this point the words were gone, any eye contact she had was gone and she kept to herself. I was starting to wonder before this moment. I actually spent the summer trying to convince joe that Courtney at least had a significant speech delay if not something more. I think I myself was hoping I was wrong about the “something more”. But by the time this picture was taken on the swing set at my parent’s house I was almost for certain. I was no longer just a teacher of children with autism. I had a daughter with autism.

So when I asked my dad what was wrong that day, I knew the answer. My little girl was slipping into her own little world. The world of autism.

#25daysofautism

Day 3: a picture after diagnosis

I use this picture when ever I talk about the day Courtney was diagnosed with autism. Though it wasn’t officially the day she was diagnosed. This is the day she was first evaluated by our school district.

I knew before this day that Courtney had autism but her dad wasn’t ready to believe it. This is the day it became more real for him. I feel this picture just says it all about our autism journey beginning.

#25daysofautism

Day 2: A picture before diagnosis

Courtney was around 15 months in this picture. At this point, as a first time mom, i felt she was reaching all her milestones. Yes, she was a colicky baby and never slept but I didn’t see those as signs then. Maybe she was a little delayed in speech but she had some words. She was able to imitate, she had pretend play skills, and she was engaged with us.

Just a few months after this picture, all those skills along with others disappeared. Regression was so hard to watch. It was gradual so at first I didn’t even realize it was happening. Then suddenly I realized I hadn’t heard a single word in forever. In fact, I don’t think to this day you would see her pretend to have a full on conversation on a broken cell phone like in this picture.

I wouldn’t change her for the world but boy would I love to have those moments back.