Miss Alyssa has had a rough start to 1st grade. This week I got an email from her teacher, who she also had last year, that Alyssa’s anxiety is very high at school. High to the point where Alyssa is struggling focusing and crying on and off throughout the day. That email came the beginning of the week and she continued to struggle all week. I have seen an increase in her anxiety at home too but not to the extent her teacher is seeing.
It breaks my heart to hear she is struggling. I am so grateful for her teacher who has a special relationship with her and is helping to make sure she gets the supports she needs.
Alyssa has what is called a 504 plan at school. It is similar to an IEP as it helps give accommodations and support to children with special needs but don’t necessarily need special education services. In Alyssa’s case her 504 plan was for accommodations that needed to be put in place because of her severe food allergies and asthma. We are currently going through the re-evaluation process to add anxiety to the plan in hopes to add some additional supports to help her be successful at school. We meet next Tuesday. I’m hoping as a team we can come up with a plan to help her get through this rough patch.
Today you are 9. 9 years old! Where has the time gone? I remember vividly your dad and I going out to dinner the night before you were born. We were celebrating the last night being just the two of us. We sat there so excited but naive about what was to come the next day when I was scheduled to be induced.
Yes, we were ready to be parents. But we were ready to be parents of this little girl who was going to follow this set path they talk about in parenting books. A little girl who was going to meet milestones on time. A little girl who would get some bumps and bruises but easy to clean up with a first aide kit. That night we sat there ready to be parents, but we were not ready for the path you were about to bring us on.
Though we may not have been ready, we quickly learned one important thing would get us through the path you have lead us on….love.
Oh, Courtney, the journey you have brought us on these past 9 years. A journey full of adventures that brought us heart ache and joy, tears and laughter, fear and excitement. Some adventures I never even imagined we would go on that first day I held you in my arms. Most of these adventures have been far from easy but every single one of them I would go on with you again because each one of them have made me so proud to be your mom.
Your Grandma Beej painted this beautiful Winnie The Pooh picture with my favorite quote on it for your nursery before you were born. It reads, “As soon as I saw you, I knew an adventure was about to happen.”
You are 9 now and there are still so many adventures to go. No matter the adventure, you keep being the beautiful little girl that you are.
We love you more than words can say. Happy 9th Birthday, Courtney Cathryn!
Courtney was trying to ask me for a certain video. She kept saying peppa pig but she would just hand it back to me when she couldn’t find what she was looking for. She then started saying something else. At first I had no clue (of course talker was dead). I started making it out that she was saying some word than “tree”. So pear tree came to mind so I looked up 12 days of Christmas. She still wasn’t satisfied. So then she started going back and forth saying “Peppa pig” and “pear tree”. So finally I typed in “Peppa pig 12 days of Christmas”. We found her video!!!!!
This week you are back to school. 3rd Grade! I can’t believe it. Where has the time gone? Wasn’t it only yesterday that you were in preschool? I will never forget when you started preschool several years back. I was so nervous.
How would you react to school?
Would the teachers know how to meet your needs?
Would the teachers keep you safe?
Would you make friends?
Of course, you quickly showed me I had nothing to worry about. Now here you are, going in to 3rd grade and you have done nothing but prove to us you can handle any challenge, which there have been several, thrown your way. For a little girl who needs consistency, you’ve shown us you can still persevere when the consistency isn’t there. You have gone through so many changes over the years.
4 teacher changes.
2 different schools.
4 changes in principals.
Changes in a district philosophy that put you in a blended preschool.
A new program.
And let’s not forget Covid!
Yes, you rocked each of those obstacles!
Oh Courtney, but wait, things are changing up on you again this year. When you go to school this week you will be greeted by another new principal, a new assistant principal, and another new teacher. But don’t you worry, Daddy and I have spoken up. We made sure that they knew that though you have shown you can get through changes, it is time to make sure you start getting some consistency.
We also made sure all these new people knew everything about you before you walk through those doors this week.
We told them about your headphones.
We told them about your struggles with bathrooms and water.
We told them about your love for animals and books.
We shared with them that sometimes your fingers forget they aren’t for pinching, your mouth is not for biting others and your nails are not for scratching.
We told them about your adorable giggle but also let them know to watch out for those pinching fingers as they enjoy the giggles.
Most importantly we told them that you are a smart and beautiful girl that is hard not to fall in love with the moment you meet her.
Oh Courtney, things may be different when you walk through those doors this week but one thing has remained consistent. Your daddy and I are behind you all the way. Cheering you on and loving you with all our heart!
Dear Alyssa,
Do you Remember when kindergarten ended and you cried for 3 days because you will no longer have that teacher? When Daddy and I told you recently that your kindergarten teacher was now teaching 1st grade and you would have her, I could hear you suddenly become anxiety free about starting 1st grade. Guess what? I had anxiety too about you starting first grade and that disappeared when I heard who your teacher was too.
You are such an incredible, smart, brave and beautiful little girl. I know last year was tough at times as your anxiety took over for a while. You powered through it like a champ. Don’t worry, I will still make sure you get all the support you need to make this a successful year too. Though your worries may big, your smile and love for life is bigger.
I also want you to know Daddy and I think you are an amazing sister. I’m sure it is not easy having to play the big sister role when you are the little sister. I know it is not an easy job, but no one else is as perfect for her as you.
So to my 1st grade, keep loving life, working hard and most of all keep being you! I love you to the moon and back.
I knew one day this would happen. I knew one day her loud squeals, the jumping up and down, the diaper peaking out of the pants would no longer pass as she’s just a toddler.
I’m noticing more looks from others. People staring at her as she passes by. People looking at the headphones while she’s in a pool, I even recently heard another child call her weird.
This summer I started noticing it. This summer I realized that others are now able to tell something is different about her.
Of course this makes me sad. I’m not sad that she appears different than others. Im sad for her. I’m sad that others stare because she acts different. I’m sad that our world is still at the stage where acting different means they need to be stared at. I’m sad that acting different automatically means weird.
But with every look and stare, I stop and think how brave she is to live each day in a world that’s still trying to understand her and others like her.
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!
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!
Autism: A Little Wild 