When you don’t have the verbal language to communicate your wants and needs it can be very difficult when you want something specific to make it known. Yes, Courtney has her talker but there are some items that are not on there.

Courtney loves those silly bath toys that squirt water. She has a bunch of them…ducks, animals, Disney characters. We’ve bought a bunch of them to use as reinforcers when she successfully goes on the potty. She calls these items “toy”.

Recently she was requesting “toy” over and over again. We would tell her she needed to pre on potty and then she could pick one. Once she was finally successful, we showed her the box of toys and she just pushed it away and kept requesting “toy”. We quickly caught on that there was a specific one she had in mind and we didn’t have it. this went on for a few days.

I was sitting next to her one day as she was on the iPad watching silly YouTube videos of kids playing with toys. This video there was someone playing with a Princess Sophia (a Disney junior character) bath toy. Suddenly Courtney pointed to the toy and said “toy” and looked at me. That was the toy Courtney had been asking for!

Of course the toy was hard to find but eBay saved the day. Today Courtney finally got her “toy”. I think she was in shock!

Both girls are in feeding therapy. Both are insanely picky for several reasons (anxiety, texture, etc.,,). Both eat slim Jim’s so with the help of their therapists, we decided to try salami. They both have been working on adding it to their diet for the last few months. I think we can officially say they both like it now! I’m so excited about this new item because it is protein which Courtney eats very little of, it’s easy to pack for lunch AND it’s something they both actually will eat!

We’ve been going to Mackinac Island and the Grand Hotel since I was pregnant with Courtney. We always stay at the same place and we always do some similar things while there. I remember the first time we took Courtney. Autism wasn’t on our radar yet. She had a few words when we took her the first time. When she saw a horse she would always say, “clip, clop”. I can remember her being completely mesmerized by the horses all over the island.

To remember the trip, each year I have made a photo book of all of our pictures. Courtney has grown to LOVE these photo books. She looks at them regularly. As I shared in a previous post, this summer she was actually asking to go on the trip.

Though each trip has had it’s ups and downs since it is never easy traveling with young kids, especially when one has autism, each year we were eager to return. Last year was our toughest trip by far. So hard that I wasn’t sure if we could do it again. It made it so this year I actually had a great deal of anxiety as we counted down. But as she asked for “horses” and “boat” I also secretly hoped it meant it would be a smoother trip.

Courtney’s eyes lit up as bright as could be as soon as she spotted the boat that takes you to the island. Her demeanor radiated pure joy. That pure joy was seen as soon as she saw the first horse. It was seen as soon as we made it to the hotel. It was seen as soon as she saw our room.

The hardest part of our trip is the nice dinners we go to where we are required to dress up. The girls do struggle with this. Our hardest moment last year was during one of the dinners. (By the way…if you remember my post last year about the couple and their daughter who took Alyssa so we can enjoy our dinner…we were reunited!) Kids under 12 don’t have to dress up, but I have always enjoyed dressing the girls in matching dresses and coordinating my dress with them. They have professional photographers who will take your pictures and everything. Courtney HATES dressing up. Courtney spends most days wearing pajamas. I was unsure how to handle it this trip as it gets more and more difficult to put regular clothes on let a lone a dress. I decided since it wasn’t about the dress, it was about any clothes, that I would still try to get a dress on her. Trust me, if I thought it was JUST about the dresses, I wouldn’t make her wear a dress. She literally only likes pajamas.

When Alyssa and I got in our dress the first night, you could almost see the wheels turning in Courtney’s brain. Then something clicked. She knew this is part of the routine. She knew that for a few hours she had to wear a dress and then back in her pajamas. Without a fight at all (which never happens when changing her out of pajamas), she put on her dress. And I think there was even a smile. I cried tears of joy. It then really hit me that this isn’t just a favorite place of Alyssa’s. Courtney truly loves this place too.

The trip to The Grand Hotel and Mackinac Island was truly GRAND. Yes, we had some really tough moments. Tears were shed, sensory systems were tested, meals were left early. But what I also saw was Courtney the happiest she has ever been. The squeals of glee as she ran down the famous long porch at the hotel in her bare feet. The look of awe as she went on a horse and carriage ride. The laughter in the burly during a bike ride. The splashing and jumping in the newly renovated zero depth pool. It was priceless. It’s these moments that make me forget the really tough parts. It is these moments that bring us back year after year. Thank you Mackinac Island and The Grand Hotel for being a place for our family to make beautiful memories! Until next time…

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.