It’s that time of the summer. Time for us to head to our favorite vacation spot! Mackinac Island, here we come! BOTH of the girls are so excited! Alyssa has been talking about it for weeks. She loves this vacation. Courtney has also been talking about it for weeks and it’s been so amazing to watch her find ways to express that she’s excited to go.

This vacation involves a long car ride, a boat ride to the island and then once you get there you see lots of horses since there are no cars on the island. Recently Courtney had been asking us for “car”, “boat” and “horse”! This week she has been angry going anywhere else and just keep repeating “horse”. So needless to say….she is excited!

Send all the positive vibes our way! Though our girls love this trip, taking them on vacation is definitely hard. Last year’s trip was tough. With that said, we are ready to make more memories at our favorite spot!

All I wanted was us to do it as a family.

Instead I got Courtney and I in the checkout area for 30 minutes.

All I wanted was us to do it as a family.

Instead I got a child too overwhelmed to try something different.

All I wanted was us to do it as a family.

Instead I did get to see how there is some acceptance and compassion at lifetime. Thank you staff for trying to cheer on Courtney as we tried to get her past the lobby.

All I wanted was us to do it as a family.

But I did learn that using Courtney’s special stroller helps tremendously for those transitions into new places.

All I wanted was us to do it as a family.

So why don’t we use the stroller more? Because it causes Alyssa great jealousy.

All I wanted was us to do it as a family.

But instead the difficulty of being a special needs sibling reared it’s ugly head. It caused tears and mean things to be said. Things that no matter how much I tell myself it was a little 6 year old with big emotions, it still stings.

“I hate having an autism sister.”

“I wish I didn’t have a sister.”

“Sometimes I think you hate me.”

Words that I know she doesn’t mean but words that will be hard to forget.

All I wanted was us to do it as a family but instead I now wish I could take back all that happened.

Alyssa Jeanne, I love you with all my heart and nothing will ever change that!

Courtney has these giggle fits that some would quickly say are the cutest things in the world. Her belly laugh is the absolute best. I dare you not to laugh along with her. Though….be careful. Approach her with extreme caution. You may not laugh for long.

One of the first things I share with anyone new working with Courtney is to watch out for her giggles. Her giggle fits are usually a sign of over stimulation. (Though they sometimes start as an avoidance tactic.) As the giggles increase the harder it is to pull her back. Simply going to touch her makes her body react as if she’s being tickled to death. If this happens while trying to get her to work you can forget it. Hence why it’s sometimes an avoidance tactic. Though I will say, it may start off as an avoidance tactic but it ends up over stimulating her and then she has no control in stopping the giggles.

The real problem with her giggle fits is that as it increases, her fingers and mouth become dangerous. She starts pinching and biting anyone close to her. Sometimes it gets so bad the only thing you can do is find a way to isolate her from others so no one gets hurt. Eventually the giggles just stop and then she’s extremely calm.

These fits happen enough that I’m not surprised when I get notes home like in the pictures. She was happy and silly today BUT she was also aggressive.

I wish her giggles were just adorable. Something that just makes everyone around her smile. But when I see her giggles…I go into high alert. How do I keep it from crossing that threshold? How do I protect those around her?

So when you see these cute giggles, just remember…enjoy with caution.

It was 6 years ago today that we got the official educational diagnosis of autism. I will never forget that day. I didn’t cry during the meeting. I didn’t cry leaving the meeting. I left the meeting relieved that somebody finally confirmed what I already knew. I left there relieved that she was going to get help.

I got many messages that day from family and friends who knew we had the meeting. But one message stands out. My godmother sent me a message that said, “there is only one label for Courtney and that’s ‘my daughter’ ”. I believe that is the moment when I cried. My godmother nailed it on the head. The autism label changed nothing that day. Courtney is still Courtney. Courtney is still my daughter. Sure, the path we planned on changed, but the most beautiful little girl lead us down that different path and couldn’t be prouder of how far she has come along the way.

(Thank you, Nancy! Love ya, miss ya ❤️)

I don’t know why autism chose you.

I don’t know why it grabbed you so hard that it leaves you unable to communicate.

I don’t know why it causes you so much frustration that you hurt yourself.

I don’t know why it causes you so much that it causes you to hurt those who love you most.

I don’t know why it causes you so much pain that you scream.

I don’t know why it causes you to giggle to the point that although adorable it leaves you out of control,

I don’t know why it causes you to be so overstimulated by the world around you.

I don’t know why after years of education and experience I still can’t make it all better for you,

What I do know is that I will never stop fighting for you.

I know that I will never stop being your voice.

I know that I will never stop finding ways to make things easier for you.

I know I love you with all my heart and will never stop loving you.

We are approaching a big week. I hesitate blogging about it because I’m trying really hard to be cautiously optimistic with optimistic being the hard part.

Courtney is 8 years old. Just 4 months from being 9. (Yikes, I need to take a minute to process that….). Courtney is still in diapers. We have tried countless times to potty train her but each time we found we had to step whether it was for her intense aversion to the bathroom or medical issues it was causing (UTIs, constipation). After each failed attempt I was feeling a little less hopeful that we would ever get her out of diapers.

Early on in this autism journey I mentally prepared myself that she may end up being an adult in diapers. It’s not that I don’t have the confidence in my daughter, I needed to have the mindset so I wasn’t angry that she wears diapers.

About a month ago I approached Courtney’s BCBA and said during the week that she has off between school and summer school, I wanted to try potty training again. This time I wanted to be as intense as possible with the process. A strong plan with home therapy’s help, increase frequency, lots of rewards…we are going all in. Oh wait….should I add I’m still at work and I’m putting this all on my super hero nanny for 3 of the days and grandparents for 1 day?

Like I mentioned, I’m trying to be cautiously optimistic. I want to believe Courtney is up for the challenge, but we still have one major barrier. Courtney is still afraid of bathrooms. Yes, I could try training seats outside the bathroom but remember she is almost 9 and near 60 lbs. Would you want to sit on a seat that is meant for a 2 year old?

So this weekend we prep. We gather supplies, we start letting her know what’s going to happen, we start sharing with Alyssa how things are going to work, and we mentally prepare for whatever may happen. So send all the positive vibes our way because this week is going to be a tough one.

I get why they are done. I have personally seen children go from the severe end of the spectrum to needing little to no supports in just 3 years. But for me it’s just a slap in the face. It’s just a reminder of how significant her needs are. It’s just points out that though significant progress has been made, she is still considered significantly delayed.

So here it is , Blue Cross, your confirmation that you need every 3 years.

Yes, Courtney still has autism. Yes, she still is significantly delayed.

Yes, she is still considered severe.

But this scale forgets to ask a few things. Let me answer those for you too.

Yes, Courtney is healthy.

Yes, she has made tremendous progress.

And most importantly, yes, she is unconditionally loved and the most amazing little girl and I couldn’t be prouder to say I’m her mom.

Every morning before I leave for work I grab water for both Alyssa and me and then go to our medicine cabinet and grab medicine for her and medicine for me. I then sit down next to her. She grabs her small little pill from my hand. We both look at each other, put the pills in our mouth and then rave to see who can swallow their pill first. Though our pills look different, they are the same. A special little thing the two of us have in common and instead of putting a stigma on it, we made it a little fun thing we do together.

If you have followed my blog, you know earlier this year Alyssa was officially diagnosed with anxiety and it was decided that she needed medication to help manage it. When making the decision to medicate, her pediatrician asked me if I struggle with anxiety and or depression. When I answered yes, she asked me if I took anything for it. Not sure where she was going with it I first wanted to say none of your business but then I answered, yes, and told her what I took. The pediatrician then said that would be the medication we start her with. If I trust it for myself then I can lean to trust it for her.

I shared with Alyssa right away that I take the same medicine. I wanted her to know that there was nothing wrong with needing to take medicine to help with her anxiety. I wanted her to know she was ok.

Anxiety is considered a mental illness. Unfortunately mental illness continues to have such a stigma associated with it and people don’t feel safe sharing their struggles with it. It shouldn’t be this way.

When Alyssa first started on medication I told myself that I will do all that I can to help her know there is nothing to be ashamed of. In fact, the opposite. She should feel brave. She should feel strong. she should feel proud. She should feel like a rock star. She should feel all of that because that is exactly what she is.

Courtney struggles with transitions. One transition that sometimes is a major struggle is the changing of the guards (aka…caregivers). This can be when I get home to relieve the nanny or when the nanny arrives so I leave. She cannot handle us all at one time. I think it’s the confusion of who is going to be taking care of her. Who is coming and who is going. There have been times where this transition has caused major meltdowns including aggression and everything. But it always ends the same way. Once the transition is over she is content. She is fine with whoever left and whoever is with her. Fortunately her amazing nanny always knows to reassure us with a picture to show us how happy she is. Prior to this picture there was anger and pinches. Now she is all smiles and enjoying climbing all over Savannah.

I know you don’t mean it but it surprises me.

I know you don’t mean it but it saddens me.

I know you don’t mean it but it makes me want to scream,

I know you don’t mean it but it hurts.

I know you don’t mean it but it scares me.

I know you don’t mean it but I hate it.

I know you don’t mean to pinch me. I know you don’t mean to scratch me. I know you don’t mean to bite me.

I know you don’t mean to bite yourself.

I know you don’t mean to cause any of this pain but I wish I knew why.

Why does your body get so silly that you can’t help but pinch the closest thing to you?

Why does your body get so out of control that you can’t help but scratch,?

Why does your body get so frustrated that you can’t help but bite not only me but yourself so hard that it leaves bruises of the teeth marks?

I don’t know why this happens but I know you don’t mean it.

But what I do know for sure is that no matter what I love you and always will.