In honor of Courtney turning 10 soon, I’m going to spend the last 9 days of her single digit days posting memories of each year.
Year 5…
More climbing, more running, and the energized bunny is still going!
I think my favorite moment of the year was right at the beginning when my family moved Courtney’s birthday party outside to the front yard when she was too afraid to go inside. It was priceless!
Her 2nd year in preschool really taught me how to be Courtney’s advocate. I disagreed with her placement but my amazing girl proved to everyone that she can take on any challenge we put forth. It was a year of helping her find her voice in alternative ways.
One of my favorite adventures this year was horse therapy. Courtney had mix feelings about horse therapies. Some times she loved, sometimes she hated it. Alyssa and I thought it was awesome!
They say it takes a village to raise a child. We lost a beautiful member of our village that year (love ya, miss ya Nancy). As each year of this journey passed by, I continue to be amazed by the love and support our village gives us.
In honor of Courtney turning 10 soon, I’m going to spend the last 9 days of her single digit days posting memories of each year.
Year 3…
All I can say is… What a year! I remember just hours after almost dying while delivering Alyssa the thing I was worried most about was that we almost missed the call to get Courtney set up with early intervention. It was at that time I knew we were headed down the road of autism. Courtney needed help and it needed to start right away.
Even though it was the year courtney was diagnosed with autism, it was far from a bad year.
It was the year she became a big sister.
It was a year our family became complete.
It was the year we learned that giving Courtney a little sister was the best thing we could ever do for her.
It was the year we started therapies and build village that would become a part of our family for a lifetime.
It was the year i quickly learned Courtney was part monkey, part bat, part energizer bunny and likely would become a trapeze artist!
It was a hard year. A very hard year. But it was the year that started us on the amazing journey that lead us to wear we are today.
In honor of Courtney turning 10 soon, I’m going to spend the last 9 days of her single digit days posting memories of each year.
Year 2…
This year started off with me mourning over a miscarriage. I was so sad on her first birthday. The loss of who was supposed to be her baby sister devastated me. I can say without a doubt though that watching Courtney take her first steps, become a climber, say some words, sing her favorite song, “Let it Go” got me through those sad days. Then a few months later we’re were finally able to announce she was going to be a big sister.
Some of the memories I have from year 2 I hold on tightly because those were the months before I knew autism was going to be a part of our journey. Sure, there are times I wish I could have those days back but if that happened, we wouldn’t have had the pleasure of going on the amazing journey that started the next year.
Those beautiful blue eyes, the smile that lit up the room, her never ending energy…so much happiness!
In honor of Courtney turning 10 soon, I’m going to spend the last 9 days of her single digit days posting a memory of each year.
Year 1…
Where do I start? Her birth, the colicky days, hitting the big milestones? I’m going with our journey with torticollis and plagiocephaly. I remember at her well visit being told that Courtney had torticollis and plagiocephaly. Though the dr explained it to me, I still felt the news was earth shattering (kinda funny to think about now)! I cried the whole way home.
I learned quickly that this wasn’t earth shattering. In fact, looking back, it was barely a hiccup! Pretty sure some friends and family told me I would feel that way eventually.
We got her set up with physical therapy and she wore a helmet for about 6 months, then that was it! What I thought was earth shattering quickly became probably the easiest part of her early development.
That first year was amazing. Where has the time gone?!
Alyssa has life threatening food allergies. Four years ago today she had a severe reaction that needed 2 epi pens to stop the violent vomiting, coughing and hives. Since that reaction she has become extremely anxious around food to the point that she has needed feeding therapy.
For awhile she had made a lot of progress with trying new things. Recently she has regressed. Honestly, her list of foods that she will eat is smaller than Courtney’s list.
Her anxiety is so intense that there are items she likes to eat but will only eat it if I make it because she’s afraid it would be made differently by someone else and then possibly not safe to eat. She basically won’t eat at other people’s houses except for Mac N Cheese at my parent’s house. While on our trip, she almost refused to eat her favorite chips because they were bought at a different store. I watched her cry in front of a bowl of Mac n cheese saying it smelled so good but she was too afraid to take a bite because we were at a restaurant, not home.
I know we have built the support team to help her through this but it still breaks my heart that a simple bite of a sandwich 4 years ago has lead us to where we are today.
Courtney has always loved the feelings of other people’s hands. More so women’s and young children. She loves soft hands and women with long nails. She connected with Alyssa when she was born because of the baby soft hands.
We just ended a wonderful trip to Mackinac Island where we stayed at the Grand Hotel. Every summer the hotel has a package called Princess and Superhero weekend. For 2 days, princesses and superheroes are at the hotel and put on the most magical experiences for the children. Events included a reception, superhero training, princess tea, makeovers, a ball and capped off by a graduation ceremony where all the children become honorary princesses and superheroes.
Of course Alyssa thought it was all magical. The princesses and superheroes get up close and personal with all the children. They learn their names. They make them feel so special. Alyssa cried as she said goodbye to all of them on the last day.
Then there was Courtney. The first night at the welcome reception she was overwhelmed. She sat in her special stroller where she is most comfortable. I pushed her around to meet each one but she would just let them wave from a far.
She did finally get out of her stroller and she walked up to Wonder Women and Captain America. They were holding their shields. They quietly stood there and held their shields out while she touched them and explored them with her hands. the smiles on their faces were priceless as they watched her slowly warm up to them.
Then she found Anna and Elsa. Her favorites. Elsa just happened to put her hand out and Courtney started feeling them. She started touching her dress. I shared that she loves the feel of hands so then Anna put her hands out. Sure enough, Courtney started touching her hands.
I was then walking around with Alyssa. She was visiting with one of the princesses and Rapunzel walked up to me and asked me the most beautiful question. She asked if there was anything she could do to help connect with Courtney. So I shared how she loves touching hands. Sure enough, as the next 2 days progressed, whenever one of the princesses and superheroes approached her they started off by giving her their hand. she grew comfortable with them and they fell in love with her.
So gentle. So patient. So inclusive. So beautiful and so incredibly magical!
Graduation ceremony was the perfect ending. Elsa came and sat next to her. Elsa sat with her while Courtney touched her hands. Then the magic really happened. She gave Elsa a hug.
I can’t thank this company enough for the amazing 2 days they gave both the girls.
Courtney was diagnosed 7 years ago and believe it or not there are days where I say to myself, “holy crap, she has autism and this is here forever”.
It’s at a moment where I’m laying next to her in my bed that I share with her until 1 a.m. waiting for her to fall asleep.
It’s at a moment when I get called by the school saying she bit someone and broke skin.
It’s at a moment where I’m stripping the bed because she peed through her diaper again.
It’s at a moment where I have to block her from going after me aggressively.
It’s at a moment where we are cleaning poop off her hands.
It’s at a moment when my husband who has always been the more “hopeful” one that she will lead a normal life as an adult says, “she’s always going to need a caregiver”.
I’ve never been in denial, I’ve always fully accepted her diagnosis. But sometimes I have a moment where I say “holy crap, she has autism and this is here forever”.
7 years ago is when the journey started. 7 years ago we took Courtney into the building that became her preschool to be evaluated.
It’s ironic that today on the 7 year anniversary of it being determined that she needed an IEP. Joe and I met with two administrators in the district to discuss some of our frustrations with her placement for next year.
As I sat and watched Joe be OUR voice at the meeting today I thought of this picture. I knew today was the anniversary before I even saw it pop up in my Facebook memories.
So many transitions since that day 7 years ago. So many unknowns. But most importantly so much growth.
We continue to have so many emotions about the transition that lies ahead for 4th grade But if there is anything we have learned in the past 7 years is that Courtney can handle any challenge she’s thrown.
That’s a wrap. Goodbye, 1st and 3rd grade! Hello, 2nd and 4th grade!
I’ve shed a lot of tears the last few days. So many emotions as I try to wrap my head around how the year went.
So many words pop in my head as I go to describe the year. Words like.,,
Change
Anxiety
Behaviors
Refusal
More change
Diagnosis
Advocating
Emails
More emails
More emails
Course work
Late nights
No sleep
But then I remember to stop and recall the positives. And one word popped in my head.
RESILIENCE
I wasn’t sure if we would make it through the year. But we did because my girls are resilient. Sometimes more resilient than me. Watching them overcome obstacles such as changes in staff and severe anxiety throughout the year made me so proud to be their mom. My heart ached as they taught through those moments but because of their resilience, they got through them.
I shed tears as I watch Alyssa say goodbye to the teacher she had for 2 years.
I shed tears as we say goodbye to the school Courtney spent the last 4 years in.
I shed tears as I look ahead to so many unknowns for the next year.
I shed tears because we did it. We got through the year.
I shed tears because I’m the proudest mom of the bravest and strongest girls ever.
Courtney and Alyssa, you are rockstars and I couldn’t be prouder!
Advocating for what you think is best for your child is hard. Emotionally and mentally hard. How do you know what is best for your child that can’t tell you?
We had a big IEP meeting this week for Courtney to discuss placement for next year. Let me back track though.
When Courtney started Kindergarten at her current school, the program was brand new in the building. They had to open the program because the similar program at another building was full. We were not happy about this but reluctantly said sure, hopefully this building will be just as awesome as the other building.
4 years later and all we see looking back if change after change. Courtney had 5 teachers in 2 years! Yes, you read that right. 5 teachers in 2 years! This fall when her 3rd teacher at this school resigned and administration met with Joe and I to share who will become her teacher, they promised us that this was going to be it. This was going to be the last change until it was time for her to go to junior high. As we got to know her current teacher, we were so glad they made that promise and were thrilled with how fast the program developed into the program we have wanted all along. Things were progressing better than ever. Courtney was doing better than ever.
Then the biggest shocker of them all was shared with us out of no where. Not only was Courtney getting another new teacher next year, it was going to be at another building.
Let me sum this up again. She has had 5 teachers, 3 Principals, 2 assistant principals all since Kindergarten. Now going into 4th grade she will have another new principal, another new assistant principal and a new teacher.
We are both teachers and I am a special education teacher so we realize changes happen. Changes her current team have no control of. We also realize now that the promises that were made to us really shouldn’t have been made because things change. Shame on us for letting our guard down and thinking we were set for a few years.
We went to the meeting ready to fight with an advocate and all but we quickly realized that they are right, the program her current school will have next year will no longer meet Courtney’s needs. She has to move.
So…Principal number 4. Assistant principal number 3. Teacher number 6. New therapists. New para-professionals. New specials teachers. New school.
We are frustrated. We feel hurt and betrayed. But most of all, we feel Courtney is being short changed once again.
We are frustrated. We feel hurt and betrayed. But most of all, we feel Courtney is being short changed once again,
Autism: A Little Wild 