Re-evals

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.

Mental Health Awareness…

Every morning before I leave for work I grab water for both Alyssa and me and then go to our medicine cabinet and grab medicine for her and medicine for me. I then sit down next to her. She grabs her small little pill from my hand. We both look at each other, put the pills in our mouth and then rave to see who can swallow their pill first. Though our pills look different, they are the same. A special little thing the two of us have in common and instead of putting a stigma on it, we made it a little fun thing we do together.

If you have followed my blog, you know earlier this year Alyssa was officially diagnosed with anxiety and it was decided that she needed medication to help manage it. When making the decision to medicate, her pediatrician asked me if I struggle with anxiety and or depression. When I answered yes, she asked me if I took anything for it. Not sure where she was going with it I first wanted to say none of your business but then I answered, yes, and told her what I took. The pediatrician then said that would be the medication we start her with. If I trust it for myself then I can lean to trust it for her.

I shared with Alyssa right away that I take the same medicine. I wanted her to know that there was nothing wrong with needing to take medicine to help with her anxiety. I wanted her to know she was ok.

Anxiety is considered a mental illness. Unfortunately mental illness continues to have such a stigma associated with it and people don’t feel safe sharing their struggles with it. It shouldn’t be this way.

When Alyssa first started on medication I told myself that I will do all that I can to help her know there is nothing to be ashamed of. In fact, the opposite. She should feel brave. She should feel strong. she should feel proud. She should feel like a rock star. She should feel all of that because that is exactly what she is.

Transitions…

Courtney struggles with transitions. One transition that sometimes is a major struggle is the changing of the guards (aka…caregivers). This can be when I get home to relieve the nanny or when the nanny arrives so I leave. She cannot handle us all at one time. I think it’s the confusion of who is going to be taking care of her. Who is coming and who is going. There have been times where this transition has caused major meltdowns including aggression and everything. But it always ends the same way. Once the transition is over she is content. She is fine with whoever left and whoever is with her. Fortunately her amazing nanny always knows to reassure us with a picture to show us how happy she is. Prior to this picture there was anger and pinches. Now she is all smiles and enjoying climbing all over Savannah.

I know you don’t mean it…

I know you don’t mean it but it surprises me.

I know you don’t mean it but it saddens me.

I know you don’t mean it but it makes me want to scream,

I know you don’t mean it but it hurts.

I know you don’t mean it but it scares me.

I know you don’t mean it but I hate it.

I know you don’t mean to pinch me. I know you don’t mean to scratch me. I know you don’t mean to bite me.

I know you don’t mean to bite yourself.

I know you don’t mean to cause any of this pain but I wish I knew why.

Why does your body get so silly that you can’t help but pinch the closest thing to you?

Why does your body get so out of control that you can’t help but scratch,?

Why does your body get so frustrated that you can’t help but bite not only me but yourself so hard that it leaves bruises of the teeth marks?

I don’t know why this happens but I know you don’t mean it.

But what I do know for sure is that no matter what I love you and always will.

Happy Easter, Roger…

Back in the beginning of March I blogged about this amazing waiter we absolutely adore and visit weekly. I shared how we are pretty sure Courtney said his name. Through the years of going to this restaurant and seeing him weekly he has grown to love the girls and we have grown to love him. Well Roger officially went above and beyond.

Joe went with his parents alone this weekend. Roger immediately said he was sad not to see the girls there because he had something special for them. He asked his wife to put together an Easter basket for both of the girls. Not just a small little Easter basket! They were the most beautiful baskets! He said to joe when he gave him the baskets, “I love those girls”!

Happy Easter, Roger! We love you too and thank you for being part of our village.

When we choose not to bring her….

Joe and I were discussing the week ahead. Alyssa has an open house at her school and without thinking we quickly said courtney would stay with the nanny. It got me thinking though. Is keeping her home from these activities hiding her? She hasn’t been at any of Alyssa’s activities. I actually wonder if her friends even know she has a sibling. Do the parents who see only one parent at her soccer games wonder why we barely are ever there together? We chose not to bring her because we know she will struggle with it and don’t want it to take away from Alyssa’s attention, but can’t help but wonder if are showing that inclusion isn’t important when we should be showing the world that inclusion is very much important. Hmmm….just some thoughts going through my head.

World Autism Awareness and Acceptance Day

April 2nd is officially World Autism Awareness and Acceptance Day. I find it interesting that it landed on a day where I am feeling truly defeated by autism. A day where I question how much I can celebrate the beauty of autism. A day where I just want to crawl into bed and hide from all that comes with having a child with autism. How do I honor this day when I woke up by being attacked by my 8 yo daughter with autism for who knows what reason? How do I honor this day when there are severe bruising on my daughter’s arm from her biting herself? How do I honor this day when there is a little sister who feels she has to play the role of big sister at the age of 6? How do I honor this day when this little sister has her own sensory issues that make it so she literally can’t handle living in the same house as her sister with autism because of her noises? How do I honor this day when this little sister sometimes is deathly afraid to be next to her big sister? How do I honor this day of awareness and acceptance?

But maybe that is exactly why we need such a day. Sure, by now everyone has heard of autism. When the relevance is 1 of 44, there is no way you haven’t heard of it. 1 of 44! That statistic is INSANE! Do you really know autism thought? Do you really know how big of a spectrum it is? Do you really know the ups and downs a child with autism goes through in one day? Do you really understand how autism impacts a whole family? Do you know there is so much to be learn by those who have autism? You may be aware of autism but are you accepting of autism?

So let me ask you this in honor of this day and month. What do you not know yet about Autism? What would you like to know more about? How can I make you not only be aware of autism but accepting of autism?

In the mean time…know that though today was a hard day, I will still end this day loving my family to pieces and not trading any of it for the world.

#letsautismtogether; #fcvblogsquad; #autismawareness; #autismacceptance;

The beginning….

April is autism awareness and acceptance month. Through out this month I will share different parts of this journey. To kick off the month, it’s only right for me to start from the beginning.

For any new followers, my husband and I have two beautiful girls. Courtney is 8 and has autism. Alyssa is 6 and has anxiety, sensory issues and severe food allergies. Unlike many, autism was a part of my life way before my daughter was diagnosed with it. I started working with children with autism when I was in college. A few of these kiddos is why I decided to get a masters on special education. I became determined to learn everything I could about autism.

After 10 years of teaching preschoolers with autism, my oldest daughter (at that point 2 years old) was diagnosed with autism. I remember the beginning of the school year after she was diagnosed, standing in the front of a room full of parents who were about to entrust me with their children. For the first time in my teaching career I could completely relate to how they were feeling. I debated on if I wanted to share my story but as I looked at these parents, I knew I needed to tell them that I get it. I needed to tell them that I too was about to leave my daughter who couldn’t talk, who had no way to express her basic wants and needs in the hands of a complete stranger. I needed to tell them that I’m feeling all the same emotions.

Here i am over 5 years later. Still teaching preschoolers with autism while raising my beautiful girls. Autism has taken us on quite the journey. It’s been a rollercoaster for sure. There have been good days and bad days. There has been laughter and tears. It’s a little wild at times.

Come join me for the month as I share more about this crazy journey. #letsautismtogether.

My baby….

I just had a wave emotions as I watched my baby get herself out of the car, grab her book bag, clothes the car door and run to her kindergarten line. She’s not a baby anymore. They grow up so fast. And then it hit me.,,I almost didn’t get to see this, I almost missed every milestone. I almost missed the growing up too fast. I almost didn’t make it past an hour of her life.

Slow down, baby girl, but so glad I’m getting to see every moment!

Meatballs for the win…

Thanks to a few different viruses, anxiety and starting medication, Alyssa has actually lost a few pounds in the last 5 months. We are keeping an eye on it. Now that she is more regulated, her feeding therapist/OT decides it’s time to really focus on adding some new foods, specifically protein, Her feeding therapist found a great meatball recipe that also sneaks a few different vegetables into the recipe. (Shhhh….don’t tell her!) After 2 tries she is giving it a thumbs up!

Courtney’s feeding therapist has decided we are going to work on the same food item. Haven’t tried yet though. There are very few items that both girls like. It would be awesome if we could add meatballs to that short list.