When Alyssa showed me a coloring page from Sunday school that had her name written on top, I immediately assumed one of her cousins who goes to Sunday school with her wrote it. She can’t write her name! But then looking at it closer, it didn’t look like her cousins (6 and 8 years old) did it either. I asked Alyssa and she said she did it. I Still thought it wasn’t possible. She doesn’t know how to write her name and nor could she have already learned how to that fast in preschool.

Being that I teach preschoolers with autism and my oldest has autism I find that it is easy to forget what proper development in certain skills looks like. You mean it doesn’t take every preschooler a couple years, if even, to learn how to write their name?

A piece of work cane home in Alyssa’s backpack today. Sure enough, across the paper is her name written the same way it was written on the coloring page from the other day. Alyssa, my baby girl, can write her name! I am so proud of her!

Another autism mom that I follow on social media was just talking about what it is like watching a younger sibling surpass the older sibling with special needs. It really is bitter sweet. There is relief that akyssa doesn’t lack the skills Courtney does, there is pride as I watch her take in information like a sponge, but there is this little sting I also feel as I see how much further Courtney is behind Alyssa. Courtney is 6 years old, has had 3 years of preschool and still is not even close to being able to write her name. She is still learning how to imitate drawing horizontal and vertical lines.

But life isn’t a race to the finish line. If Courtney needs longer to reach certain milestones, I will give her that time.

I am so proud of the progress both of my girls are making in this journey called life!

Thirteen years ago I voluntarily made the switch from teaching 1st-3rd Graders with emotional/behavior orders to teaching a structured preschool classroom for children on the autism spectrum or who benefited from a structured environment. I didn’t switch positions because I didn’t like my first position. I switched because I really wanted to work in the area of autism. What I didn’t know then was I was eventually going to have my own child with autism. If I knew then would I have still switched? Who knows.

Being a mom of a child with autism can be hard work. Being a teacher of children with autism can be hard work. Being both can be very trying some days. Ok, who am I kidding, a lot of days! Last school year was a very difficult school year both for Courtney and for my classroom. It was so hard at school managing all the different behaviors in the classroom and then to come home and manage the same difficult behaviors. I hated that by the time I got home I was already physically, mentally and emotionally drained yet still had to face the challenges of my own child with autism. By the end of the year I felt so burnt out. I really questioned my ability to continue teaching. Any time I mentally considered the possibility of leaving my position, I could tell my heart was not ready.

So here I am, another year of doing double Autism duty. Again, I feel the toll both sides are taking on me but again I can tell my heart is not ready to change what I am doing. It’s hard, it’s exhausting but here’s the thing…I love both jobs too much.

When Courtney was born, we were blessed to have family as her caregivers. Three days a week my mom watched her at her house and two days a week joe’s parents watched her their house. We were able to continue using them when Alyssa was born. It is so hard leaving your babies to go to work but knowing they are with people who love them definitely helps.

The time came to figure out different caregiver plans when Courtney needed a 5 day a week preschool program. Because of her needs, we knew a day care center wasn’t going to work. We needed a nanny. That is when Savannah entered our lives.

I was so nervous to leave my precious girls with a complete stranger but it ended up being the beginning of a beautiful relationship. She became our life saver!

As I’ve shared, she is leaving. We started with a new nanny when the school year started but Savannah was still around some for date nights and one last overnight but it’s time to say goodbye.

I will forever be grateful for all she did for our family these past 3 years and she will be missed. Hopefully we will always be on her list of stops whenever she is in town.

We love you, Sahna!!! (No clue how to spell what Alyssa calls you.)

I haven’t posted about horse therapy in a while partly because Courtney has been going through a rough patch with it. It started a few months back when she would start crying in the car as we got closer to the stables. We didn’t take it as a sign to stop therapy because once at the stables she would seem happy. Yet she wasn’t all that happy once she got on the horse. We also did t want to stop therapy because Alyssa and I truly enjoy our time with the horses.

Ms. Christine and I were determined to figure out what changed for Courtney. Was it the change from bareback riding to riding with a saddle? Was it riding inside versus outside? Did something spook her?

After testing out a couple different theories, we finally came to the conclusion that it was the helmet. But why? Then it dawned on me. This aversion to the helmet started around the same time she became very dependent on her headphones. It’s gotten better but when you take Courtney’s headphones off, her hands immediately cover ears and you can sense her anxiety increase. So of course it made sense that horse therapy was starting to be stressful. When it was time to ride, we ripped her security blanket from her. Makes complete sense!

We have been working on her decreasing the wear of the headphones. We don’t want to make her uncomfortable so we are doing it delicately and definitely not keeping them from her. But there are going to be times where she may need to take them off so we are working on it.

Today’s therapy session was fantastic. She tolerated us removing the headphones and putting the helmet on. And…there were smiles while riding the horse again. I was so excited to see that smile. So glad we stuck it out. Just another reminder how behaviors are a form of communication. There is a reason for every behavior. Sometimes it’s hard to find the reason, but taking that time can pay off!

“Aware is halfway there.” I heard this in a workshop today and it resonated with me as a mom of a daughter with autism. Awareness of Autism is huge and I am so glad awareness is being spread daily. But now as the CDC shows that it is now 1 of 49 children have autism, it’s hard not to be aware of it? It is so much more than being aware though. Aware is halfway there. The bigger question is, are you accepting Autism and all that it entails?

What do I mean by accepting Autism? It means not judging when you see a child melting down in a store and maybe even taking a moment to understand what could be causing the meltdown. If you are really brave, even seeing if you can assist the parent. It means understanding that some will have a hard time waiting their turn in a line, being quiet in a movie theatre, or need to wear accessories like chewies and headphones all the time.

As most know, Courtney wears adorable pink headphones ALL THE TIME. They help her with not only noises that she is sensitive to but also managing her anxiety. I swear she has been happier in general since starting to wear them. Though we are trying to find ways for her to cope without them too because we don’t want her to become even more sensitive to noises. I’ve talked a lot about these headphones so you are probably well AWARE of whey she wears them so going to leave it at that. My question is…what were your first thoughts when seeing her school picture? It is very much ok if you first thought, “why didn’t school take the headphones off”. I don’t blame you! Her dad and I both did. But honestly, that is the acceptance part. I think part of reaching the accepting Autism part is being able to look past the differences and accept them for who they are. Courtney wears headphones, that is who she is. As my cousin said to me in a text, that is her accessory. Some wear rubber bands to keep their hair back, some wear glasses to see, some wear hearing aides to hear. Courtney wears headphones to be regulated. I needed a minute when I first saw the picture, but then I saw the picture as it was. A beautiful picture of my little girl! Sitting still, smiling and happy! What more can I ask for?

And that, folks, is acceptance!

I have the app, Time Hop, on my phone. It’s an app that is synced with your photos, facebook and other social media. It pulls up all photos or posts that you made on a certain day. So you get to relive all the ups and downs that ever happened on a specific date. It’s a good thing and a bad thing to have this app. I get to relive my favorite moments with family and friends and I relive some of my lowest days as I went through my divorce and other tough days. I love looking at old pictures the girls when they were so little and the things they use to do that made us laugh or cry. But occasionally a picture of Courtney comes up like the ones I shared above that make me both smile and cry. (Side note…Kelly, if you are reading this, you always do such an amazing job capturing pictures of the girls!) I smile because honestly, how beautiful is that face? And those eyes!!!! They are daggers!!! But why do I want to cry when I see this picture?

I’ve talked about it before, but Courtney was developing right on track and then started to regress sometime between the age of 1 and 2 years old. It was so hard to watch. As I have mentioned in previous posts, I feel pictures from that time are just so telling. I see pictures from before the regression where she looks so connected with our world and then pictures like the ones above where she is no where to be found in those beautiful eyes. In these pictures you can almost see how they are looking right past you and not connecting with you. My sister Kelly (also known as my amazing photographer), another family member and I were chatting not too long ago about when I really knew Courtney had autism. I explained how I can tell the timeline just looking at old pictures of her. My “photographer” said she can too.

The memory these pictures also triggered is the health issues we were dealing with around the time these pictures were taken. The fall of when she turned two, Courtney went through this horrible phase that I often describe as very similar to when she was a colicky infant. On and off moments of unconsolable crying. I remember my dad calling me at school saying that my mom just couldn’t comfort her. I broke down into tears asking, “what is wrong with my little girl?” I was already noticing red flags at this point but this is where it became evident as whatever skills she hadn’t lost yet disappeared.

As these pictures appear in my “time hop”, I’ll have a moment, but then I think about where she is now. I look at recent pictures and see how happy she is and think about the progress she has made over the past 4 years. I am so incredibly proud of every little step she has made. Those eyes are still daggers and sometimes they still stare right through you as if she doesn’t even notice you are there. But when those big blue eyes do connect with you, watch out, your heart will melt. Yes, these pictures are so telling. They tell me about the ups and downs we have gone through in this journey. But most of all, they remind me of the beautiful, strong, little girl that I’m lucky to have as my daughter.

Six years ago today, this beautiful blue eyed bundle of joy entered our lives and made us parents.

A Winnie the Pooh drawing (painted by her Grandma Beej) hangs in the room that was hers (now Alyssa’s) when she was a baby. “As soon as I met you, I knew am adventure was about to happen.” Six years ago we didn’t have the slightest clue of what that adventure was going to look like, but we knew we would love her unconditionally through it.

We have gotten a lot of bumps and bruises along the way on her adventure but it has also been filled with so much fun and laughter. Her progress through her adventures have been amazing and I couldn’t be prouder.

People say Courtney is lucky to have me as a mom. The truth is, I’m lucky to have her as my daughter. She has taught me so much in just 6 years! What an adventure it has been and I wouldn’t trade it for the world!

Happy Birthday, my sweet Courtney! Love you to pieces!

Received this text the other day from Courtney’s Papa…

Courtney came home in meltdown mode. Driver said only started as she was stopping at your house. Nothing on school note to suggest anything wrong. Held crotch area during crying – not wet and no poop. Quieting down a little now, but starts crying off and on for no apparent reason. Sending this text since it is Friday afternoon!

Those who have followed our journey may understand why my first thought when receiving this text was a very anxious, NO, NOT AGAIN!

Rewind almost exactly a year ago. Almost to the exact weekend! Ironic, right?! Courtney started having horrible meltdowns that consisted of inconsolable screaming, self injurious behaviors, and grabbing herself in the crotch area. Literally nothing worked to calm her down. We saw these episodes on and off for months. She missed lots of school, I missed lots of work, we all cried lots of tears. After several tests including multiple urinalysis, abdominal X-rays, and blood work it was concluded she was severely backed up. Those 4 months were traumatizing.

Recently I was listening to a podcast (@adventuresinautismpod) where an autism mom talked about the tough summer they had because of behaviors that her son started to exhibit. She commented that it felt like she was recovering from a trauma. I took a moment to respond to the podcast that as someone who has survived a near death experience, I can easily say there are events with Courtney that are just as hard to emotionally recover from. The feeling I felt Friday when I received the text from my father-in-law proved that.

The end of the text said “texting this because it’s Friday afternoon”. Meaning, just in case you want to call the dr before the weekend. That’s exactly what I did. This time around we are going to stop it before it gets as bad. This time will be different. We will not relive last fall.

Well…as suspected, it’s a combination of constipation and a UTI. We will not let this get us down though. It is only making me more determined to find ways to help her chronic issue with constipation.

On a positive note…kindergarten is off to a great start! Let’s just hope this doesn’t change that.

My little girl is a kindergartner. Where does the time go? Such a scary, emotional and exciting time for all parents. Some are being sent to school for the first time, some are going to school all day for the first. For most, it’s a new building, new teacher, new friends, new rules. Some may be lucky to have a sibling, relative or friend already there. Some of the children will be excited for this journey some will be scared. As parents, you just hope you’ve given them the tools to navigate it all.

I have no idea how Courtney feels about this big transition. I do know I’m scared as all hell. I’m sending my little girl who doesn’t have a voice, who is still so dependent on an adult to function in all environments and hurts herself or others when frustrated on this new adventure.

Will other children stare at her as she walks around with her ears covered? Will they become scared of her if they see her bite? Will they make fun of her still being in diapers? Will this school accept and love her for who she is?

Today the school held a New Family Welcome meeting. They invited to families like us to hear a short presentation about the school, get a tour and in Courtney’s case because of the brand new program, even get to meet the teacher. As soon as we arrived Courtney started to struggle. Joe and I knew there was not a chance that she would be able to sit for the brief presentation. A friendly face noticed Courtney struggling right a way. This friendly face was the principal. She knew us from the meeting they held with just the parents of the autism program earlier in the summer. She quickly greeted Courtney by name, though had never met her. Directed us to her classroom and let us know it was ok if we didn’t go to the gym for her presentation.

Courtney’s teacher and speech therapist then gave us a private tour of the building at Courtney’s pace. They let her wonder areas, touch things and go as slow as she needed to. They made us feel at home.

When leaving we had to make a stop at the office. By now Courtney was a little more relaxed. She wondered around the vestibule as Joe talked to the secretary. As I watched her touch the wall, I noticed the saying they had on it, “when you enter this loving school consider yourself one of the special members of this extraordinary family”.

A welcome sign on our lawn, a friendly principal greeting us at the door, a caring teacher and therapist…

This is not our home school. It is not the school Alyssa will be attending. It’s not the school the neighborhood kids will be attending. But today this school became our “home” school and we are excited to be part of the extraordinary family.

They say “love needs no words”. I know Courtney loves me, I don’t need to hear her say it. I know Courtney knows me, I don’t need to hear her say my name. But that doesn’t mean that I don’t have moments where all I want to hear is her say, “I love you”. Or hear her call me “mom”.

Her feeding therapist shared with me recently that she showed Courtney a picture of Joe and I and she was able to verbally label Joe as “dad”. She was very sensitive in telling me she couldn’t exactly say “mom”. So today I pulled up a picture I took of her, Joe and me. I pointed to her dad and sure enough, she said “da”. I smiled. I almost didn’t point to me because I didn’t want to feel that disappointment. I’m so glad I asked her! I pointed to me in the picture and asked her who it was, and the most beautiful sound came out of her mouth…”ma”! Tears of joy.

Love needs no words but it still is nice to hear certain ones!