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!

To the guests sitting around us at dinner tonight who watched us sit down near them with one child already in tears, thank you for giving us smiles instead of judgement.

To the same guests who continued to give us looks of encouragement when our other daughter started to meltdown over dinner choices.

Thank you to these same guests for continuing to show compassion as our mealtime continued to go downhill to the point where I grabbed my girl’s hands and rushed out of the dining room ready to end our vacation right then and there.

And then to those same guests sitting by us who quickly surrounded me ready to help after we re-entered the dining room with two girls still unhappy and now me who had lost full composure. As I broke down in tears feeling like I couldn’t control my own kids, you were determind to help make sure we enjoyed the rest of our dinner.

First the the gentleman who comforted me ensuring me that our family wasn’t ruining their dinner. You made me smile as you told me how you saw the girls outside earlier having a blast and how adorable they looked. Thank you!

Then to the lady at the other table…you came to our rescue by offering to take one of them out to the porch while we ate. You didn’t care which one and you made sure I knew you were fine if they even cried the whole time. You are our hero! You, along with your husband and daughter, left the rest of your family and entertained Alyssa outside so Joe and I can enjoy the rest of our dinner as Courtney calmed down next to us. Thank you!

We lost at the game of parenting today but we were greeted by compassion from complete strangers that we will never forget and forever be grateful for.

I think this kinda sums up what it’s like bringing a child with autism on vacation. It’s 11 p.m. and this is where Courtney finally fell asleep. The stroller is her one comfort from home. She feels safe in there. Sage enough to fall asleep.

This trip has started off a little tough but we are still having fun. I plan on blogging more about the ups and downs. Fortunately joe and I set our expectations low when heading on vacation so the tough parts don’t surprise us or get us down.

I have said it many times before that the therapists that work with our family are so much more than a therapist. Especially once you spend 5 years once a week working with our family

Ms. S has worked with Courtney the longest and today was her last day. She became part of our team as Courtney’s Speech/Feeding therapist before Courtney was 3 years old. She was part of our village before autism became our reality. She has supported our family through some pretty tough lows and she was one of our biggest cheer leaders during some pretty awesome highs. She helped Courtney drink from a cup, she taught her how to use a utensil, she worked tirelessly on helping her try new foods, she even got the most beautiful video of her teaching Courtney how to say, “I love you.”

After 5 years, Ms. S. became so much more than a therapist. She became a friend. We are so sad to see her leave BDI and this state but I know she will be cheering us on from her new home because once you are a therapist you are forever in our village.

Thank you for being an amazing team member and friend! Love, Courtney and her family