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,

Hello, I’m Erin and I’m a mom of two girls with special needs. There. I said it. I alluded to it back in January that we were given some answers to why Alyssa could possibly be struggling so much at school. Diagnosis? ADHD and Anxiety.

Why am I sharing this now?

Because this past week I have felt all the feels (stress, exhaustion, fear, etc) of being a mom of two children with special needs.

This past week my strength was tested.

This past week my patience was tested.

This past week was hard.

This past week I had to advocate hard for both girls.

This past week I had to be their voice.

Alyssa is struggling with anxiety and panic attacks that have left her unable to do activities she usually loves.

Courtney is doing better than she ever has but may have her world turn upside down going into the next school year.

This past week knocked me down but when it comes to my two girls, I will do nothing less than get right back up and fight for them.

This week I completed the two year course sequence that is required to become a Board Certified Behavior Analyst (BCBA). It was 10- 7 week courses. They were intense. Now I can say I officially completed Masters number 2! The course work is only step 1 though. I also need to complete several practicum hours that can take up to 18 months to complete (I get to use my current job to do this) and then step 3 will be sitting for the big BCBA exam. So yes, I am done with the courses but the journey is still not complete.

As part of my culminating paper, I had to sum up what I learned and how I would use it in any future career choices. I had to laugh at the “future” part. Some co-workers have even asked me lately what I plan on doing once I finish this process. Honestly? Likely nothing. I think the way I summed up my culminating paper explains it best…

“I would like to close out by explaining why I chose to complete the Masters of Special Education program in Applied Behavior Analysis. For many years, it has been my dream to become a Board Certified Behavior Analyst (BCBA). Almost 15 years ago I completed the coursework that was required at that time to become a BCBA but life happened and I never completed the practicum nor sat for the test. Fast forward to now, I’ve been in the field of teaching children with Autism Spectrum Disorder and other disabilities for 20 years and I also have my own daughter who is significantly impacted by ASD. My daughter has had BCBA’s that have helped her and our family in ways I will forever be grateful for. They have not only had an amazing impact on my daughter’s progress but they have impacted me. I am 46 years old and in no means ready for a big job change. What I am ready for is to make sure I can continue being the best special education teacher and special education mother. I am ready to finally reach my dream. My passion for the field of behavior analysis has grown both because of my years as an educator and my personal experiences as a mom of a daughter with autism. As a result of this, I have a love and desire to help other families like the way other BCBAs have helped mine.”

It feels so good to be done with the first step. It took a lot of time and work. It took extra patience from my family. It took a lot of cheering on from my friends and family. I can’t thank you all enough! Here’s to the next 12-18 months as I complete steps 2 and 3!

One thing I absolutely love about Courtney’s teacher is the life skills she makes sure to work. Sure, academics are important but at some point most of us parents who have children with very significant needs focus a little less on the academics and more on how to function in this world.

May sound silly but one life skill is enjoying a movie night with your family. Family time is so important and you hear families doing that all the time. We don’t. None. Not at home, not at the theater. I have 2 girls with short attention spans. Now Alyssa can if it’s a movie she really wants to see but I can’t sit and enjoy because I’m chasing the other one around.

Courtney’s class on Friday afternoons has movie time. The teacher puts a movie on and they work on just downtime after a long week. When she told the parents about this she said she had heard from so many parents that they would love their child to enjoy movie night with their family. So she’s working on it.

Savannah did a movie night with the girls last night. Of course Courtney showed no interest but she was excited to share pictures of the few moments she did venture over to see what they were watching.

I shared the picture with her teacher and her teacher was so excited to see it and share that she can now get Courtney to sit up to 20 minutes with the group to watch a movie! I’m thrilled! Life skills are so important!!!!

(By the way, I’m not going to go in to details, but please send positive vibes as issues about placement have come up and mama bear is not happy. I will leave it at that for now.)