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!

Alyssa seldom gets time with both of us. One of us is usually with Courtney. So joe and I made it a priority that at least one day of each week of Courtney’s summer school we would do something special with her. You could see the joy and peace in her face the whole time.

I’m trying hard to understand where all her recent behaviors are coming from. I’m probably letting the special needs teacher in me analyze too much. But here’s the think. Alyssa is a little 5 year old who has to adjust to some pretty big kid type things. She’s got a sister who requires 100% attention. A sister who has special people coming in and out of the house to work with just her. She’s being carted around to therapies. Her sister destroys her things, scratches her, and we won’t tell her sister to stop making the noises that drive her absolutely over the edge. That’s a lot for a 5 year old to understand.

So on special outings like today, watching her get to be just a little 5 year old is definitely special.

Alyssa had a tough day. One tantrum/meltdown (whatever you want to call it) after another. Today her strong willed and need for control personality got the best of her. Courtney’s noises got the best of her. I would get her calm after one episode and then something else would trigger her.

Days like this hit me hard. It wears on my patience and it makes me question my parenting big time. It never fails that I raise my voice louder than I should at her and in the end hate myself for it.

Tonight I then sat in awe as she did some Cosmic Yoga. I watched her body look so calm and regulated. You would never guess she spent most of the afternoon in fight or flight mode.

Oh, Alyssa, we will get through this season of battles. We will find ways to help you cope as an autism sibling. We will find ways where your strong willed behavior can shine. I may make mistakes as we get through this but know I love you with all my heart!

This autism journey has definitely had it’s ups and downs. Some laughs and some tears. Some moments that will never be forgotten. But let’s journey back to the beginning. Those months leading up to and diagnosis day. Those months where you felt you were in this alone. Those months where you were unsure if you would every survive this mourning. Those months where everything changed in your world. If only you knew then what you know now…

Let’s start with November 6th, 2015. Yep, Alyssa’s birth. The scariest day ever. The day where you almost died after delivering Alyssa. The day where you almost left Joe to raise Courtney and Alyssa on his own. I start with this day because I know what scared you the most on this day. It wasn’t that you almost died and left Joe with two girls. It’s that you had just begun your fight of figuring out why Courtney was regressing and you couldn’t leave this world without others knowing what you already knew deep inside. Erin, it will be ok. You will all survive that day and soon enough you will be back to good health ready to be Courtney’s biggest advocate…and Alyssa’s.

Next, I went to tell you…be easy on Joe. He is going to struggle with this diagnosis at first. He is going to question all your expertise. He is going to deny that Courtney is anything but perfect. But Be easy on him. He needs time. He will get there. He will soon accept Courtney has autism and be one of her biggest advocates. Be easy on Joe and save your energy for other fights.

Oh Erin, it’s ok to grieve this diagnosis too. You don’t have to pretend you are always the strong one in this journey. It’s ok to let your guard down. It’s ok to be angry. It’s ok to be sad. It’s ok to question every part of the journey. It’s OK!

And Erin, it’s ok to ask for help. During this journey you are going to build a village that will be by your side through it all. Lean on them. Let them know when you need them to listen. Let them know when you need a shoulder to cry on. Let them know when you need them to fight with you. You have built this village so don’t forget to use them.

Dear Erin…this is going to be quite the journey but I know you are up for it. You will be the best mom Courtney and Alyssa can ever ask for.

Here I sit in the hallway. Actually sitting. One in one bedroom and one in another. So here I sit.

Here I sit feeling frustrated that they can seldom be together.

Here I sit. Not running up and downstairs between both girls. I’m actually sitting.

Here I sit feeling relieved that they are actually on the same level.

Here I sit ready to leap up in either direction the second another fire needs to be put out.

Here I sit waiting for the next sound of distress…yep, there it is! Alyssa heard Courtney making some sort of noise. Phew…it didn’t escalate.

Here I sit wondering how we got into this little rough patch we are in and wishing there was an easy way out of it.

Here I sit feeling like the days are long and tiring but remembering to enjoy them as they are also flying by.

Here I sit happy that we all made it through another day in one piece, happy and healthy. Isn’t that all that matters?

So here I sit reminding myself that it’s not all that bad. All is good.

Gotta go…the next fire needs to be put out!

Our biggest challenge in the world of autism right now is Alyssa’s inability to tolerate Courtney’s noises. Courtney has all sorts of noises…happy noises, mad noises, in between noises, and a licking noise (that I too find very annoying). Oh the noise, noise, noise! All of these noises at any point can send Alyssa in a downward tailspin towards complete meltdown mode that puts the Grinch to shame.

These meltdowns start with just a moan of displeasure. If Courtney continues making the noise, Alyssa’s moans get louder and nastier. Then she quickly snaps. Items start to be thrown, she starts hitting Courtney, she will even rip Courtney’s headphones off and hide them. It gets ugly. Alyssa gets so loud during this that Courtney can’t handle being by her. So separate levels of the house they go.

Alyssa has struggled with this for a while now but we are at a point where it’s making it difficult for us to function as a family. At home we find that them staying on different levels of the house helps but that’s impossible during vacations in a hotel rooms or small cottages. This was definitely our biggest challenge during our last vacation. Headphones help but we are finding she’s starting to hate that she has to wear headphones.

We’ve been working with an OT and a psychologist to help figure not only why this is all happening but how can we help her cope with these noises in a more positive way since stopping Courtney from making these noises is an impossible task.

Alyssa loves her sister. There is no question about that. It is so hard as their mom to see that them being in the same room causes so much angst and anxiety. So much frustration and even more noise, noise, noise!

This trip was tough but once I received the professional photos we took each night I broke into tears of proudness. Between the tears, the scratches, the bites, the rain, the food poisoning (and the damn black cat that crossed our path on day one), our little crew still had a ton of smiles and fun too. We made new memories, we experienced autism acceptance and even made some friends.

We vowed at the beginning of this autism journey that we wouldn’t let it stop us from doing things we wanted to do and somehow we always show we can handle it. I couldn’t be a prouder mom and wife.

Tonight was one of those nights where a car ride was needed to fall asleep. We haven’t needed one of these in a long time. Of course she needed it when we are on an island without cars. I had to learn to improvise for this one of our first trips here with kids. Forever grateful for the long hallways in the hotel. Joe and I have walked many miles in these halls in years past. Tonight’s ride even included a passerby letting me know I’m a great mom. Thank you, ma’am, that means a ton. Another successful “car ride”, Grand Hotel style in the books!