#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!

Oh the emotions that hit me when videos and or pictures like this one pop up.

The ones taken before autism took her words.

The ones taken before autism took her eye contact.

The ones taken before autism took Courtney to a world we will never completely understand.

I sometimes ask myself if there were signs of autism early on and sometimes I can come up with some. She’s been picky about eating since day one. She was a colicky baby. She’s always had gut issues.

Then I see a video like this one. There she is making so many different sounds. Imitating. “Reading”. Connected. Reciprocity. All skills we are working so hard on now 7 years later.

What happened? Why did it happen? Could I have stopped it from happening? Questions I’ll ask myself during the emotional rollercoaster I get on when a memory like this pops up.

I work hard not stay on that emotional roller coaster because there are no answers to those questions. Even if there were answers to those questions it doesn’t change anything.

As my ride on the emotional roller coaster comes to an end I always remind myself how much Courtney has grown over the years.

Most importantly I remind myself that autism didn’t take everything. She is still and always will be our beautiful little girl with a smile that can light up the room.

The girls and I had a play date today. We don’t do many play dates. There are a few friends I feel comfortable doing them with because they are very much a part of our village and love and support us but besides that, I find play dates hard.

Today’s play date was with friends of Alyssa’s from preschool. I found it important to overcome my fears and take both girls on this one. I’m glad I did and we had fun but it definitely came with some close calls that reminded me why I don’t do them often.

I was watching Courtney like a hawk the whole time because this play date was at a playground near a river. Note to self…avoid playgrounds by rivers.

Even with me watching her like a hawk she still managed to run near the river twice. She’s that quick. It’s that easy to lose her. When you have an slipper, it can take a split second.

The other close call was actually with Alyssa and was quite an eye opener. Alyssa has severe food allergies. Today her friend offered her some of her snack. It was Chex cereal which Alyssa does her plain old corn Chex. This looked like plain old corn Chex. Alyssa is amazing about asking before she eats something if it’s safe. Almost too good. So before she grabbed it she looked at me and said, “I can eat this, right?” She thought she could because it looked like the Chex she eats. I almost said yes for the same reason but played it safe and asked her friend what flavor it was. Her friend said honey. I told Alyssa we better not because I can’t look at the box. Alyssa’s sweet friend them asked her mom what was in the Chex. Her mom’s response was, “it’s honey nut Chex.”

It’s that easy to have an accident when it comes to allergies. That split second where I almost decided to say that’s the corn Chex we eat so sure eat it could have turned into something very serious.

So that is why we don’t do play dates often. Too many possible accidents. But I also know we can’t seclude ourselves. If we did I would have missed out on seeing the beautiful relationship Alyssa had with two friends from her preschool class.

The “almosts” are scary but friends are beautiful.

So I just did this thing. Some are going to say I’m insane. Some will ask where I will find the time. Some may wonder if I forgot that I’m already usually stressed and overtired. Yep, I’ve asked myself all the same questions.

So here’s the thing…for a few years now I have been wrestling with the fact that I am missing something in my life. Like there’s is something I needed to do to feel like my life is fulfilled. I know…this all sounds crazy.

After mulling this over for a while now, I nailed it down to two things that I was “missing”. The big family that I wanted and becoming a Board Certified Behavior Analyst (BCBA).

I am unable to have more kids so joe and I looked very seriously into adopting. After going back and forth we made the decision that it wasn’t the right time for it.

So..,becoming a BCBA. A BCBA is a certification big in the autism world. Courtney has a BCBA as part of her team. I’ve wanted to be certified way before Courtney came into my life. Back in 2007/2008 I started the course work to get certified. Life happened though. I got a divorce, moved out of my house, met joe, remarried, had kids and then Autism became our family’s reality. Needless to say I didn’t finish the process.

So…I did a thing. I applied to ASU’s online program so I can finally become a BCBA. Of course I found out I have to start over because of the nature of the program and how long it’s been since I’ve taken the courses. Nonetheless, I’m ready to do this. Ready to fill in my missing piece.

Not sure where I want this to take me but I know it’s what I’ve wanted to do. So here I go! Wish me luck!