#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.

I am part of Finding Cooper’s Voice Blog Squad. A group of caregivers who blog about special needs. During the month of August we are doing a #25daysofautism photo challenge.

Day 1: a picture of your child as a baby

Courtney is the one who made me a mom. I will never forget that day.

“As soon as I saw you, I knew a grand adventure was about to happen” -Pooh

Oh to be in her head.

To feel all that she’s feeling. To hear all that she’s hearing. To see all that she’s seeing. To see so much joy makes my heart explode.

Oh to be in her head so I can also know what she’s thinking.

What is she liking about the wet sand as she lets it run through her fingers? What is she l liking about it as she submerges her whole body in it?

Oh to be in her head.

There is so much joy but I only get to see it through her smile and hear it through her happy sounds. If only I can know what she is thinking.

Oh to be in her head.

This sensory experience would put me in misery but obviously not her. Why is that?

Oh to be in her head.

But since I can’t be in her head, I will enjoy her sounds, her frolicking, her smile. I will put aside all my own sensory issues: Because whatever she is thinking, it’s certainly beautiful.

We are on the road. This time we are road tripping out east to my in-laws cabin near the ocean. We missed this trip last summer thanks to Covid. Wasn’t going to stop us this year.

We usually take an airplane but decided since Courtney’s mask wearing is far from perfect we should avoid the airport. So road trip it is,

Our trip to Mackinac island definitely made us question if we ever wanted to travel with the girls again but here we are…traveling.

This trip will be different. I think we need this trip. I think this trip will rejuvenate us some as a family. Uh oh.,,.I’m putting some high expectations on this trip!

The last few weeks have been a struggle. We’ve spent them walking on egg shells and wondering who and when the next meltdown would be. I have actually found myself counting down the days to school starting for all of us thinking getting us back into a strict routine will help. Just under 3 weeks for me but who’s counting.

But maybe this vacation is what we need. Twelve days away from therapies. Twelve days away from the constant hustle and bustle. Twelve days where we actually have constant help from 2 other adults since joe’s parents will be there.

So here’s to 12 days of us just concentrating on being a family.

Sometimes I think I expect Alyssa to act older than she is. She doesn’t have autism so she should be able to do everything Courtney can’t do. Even those things that most 5 year olds still struggle with.

She doesn’t have autism so she should always be able to tell me how she is feeling.

She doesn’t have autism so she should be able to tell me why she feels a certain way.

She doesn’t have autism so she should be able to understand why her sister does certain things.

She doesn’t have autism but she is 5. She is still a little girl trying to figure out her own emotions and how to regulate them in a crazy world. She is just 5.

Today was a hard day. Alyssa couldn’t tolerate Courtney and her noises whatsoever. Everything became a power struggle. Everything was a fight.

Tonight at bedtime as soon as Alyssa’s head hit the pillow she fell asleep immediately.

Oh Alyssa, why didn’t you just tell me you were exhausted today. That you were going to need everyone to be a little more patient with you. That you were going to need extra support to tolerate Courtney’s noises. Why didn’t you tell me, Alyssa?

Because she is just 5.

I love when I catch Courtney actually playing with toys. Quite often she’s just labeling them, licking them or lining them up. Yes, labeling and lining these toys up is one way to play with this particular toy but she typically doesn’t play with the mat part.

I observed two interesting things while she was playing with the toy. First, she refused to put the ostrich on the “o”. She insisted on putting an extra alligator on the letter “o”. She knows alligator starts with “a” and she knows the alligator that she put on the “o” doesn’t belong to the set. Not sure what that was all about.

The other thing I found fascinating was she came across two different animals that weren’t in her bin. In both cases she ran off somewhere then immediately came back with the animal. How in the world did she know exactly where that animal was?!

Her brain works in mysterious ways! That’s autism for you!