This is our autism, day 30

During the month of April in honor of Autism Awareness/Acceptance Month I am going to post a picture showing our autism. Autism is a spectrum. When you know one child with autism you know one child with autism. This is our autism.

So here we are. Just a family trying to live each day to it’s best as they navigate all the ups and downs of this crazy journey. We stand behind Courtney giving her all the love in the world. This is us. This is our autism.

This is our autism, day 29

This is Courtney…as I wrap up my month of sharing our autism I thought one of the posts should be a beautiful picture of Courtney. Yes, she has autism and autism is very much an important part of who she is, but more importantly this is Courtney. She is a beautiful little girl, with the biggest dimples on each cheek, big beautiful eyes that are like daggers into your soul when she looks at you, and a smile that will light up your world. She is truly amazing and I am so lucky to be her mom. This is our autism!

This is our autism, day 28

It takes a village to raid special needs children | Day By Day Mama

Our village…People ask me all the time how I do it. Quite simple…I have an amazing village of people cheering my family on. As the saying goes, it takes a village to raise a child. Our village consists of family, friends, caregivers, therapists, and teachers. It also includes people I have never met but have gotten to know via social media. These people have been by my family’s side either in person or through their messages, thoughts and prayers since day 1 of our journey. These people have helped Courtney through all the ups and downs. They have helped me through all the ups and downs. There are times where I feel isolated as an autism mom, but I am definitely not alone. I know there are many autism moms can not say the same thing. It takes a village and I thank you for being part of that village! This is our autism!

This is our autism, day 27

Without words…as I have shared before Courtney is considered non-verbal. Though as of recent she is using verbal language more and more every day. There is one other thing that gets in her way though. It’s called Apraxia. In short, Apraxia if speech is when a person’s brain is not communicating properly with the oral motor muscles which in turn makes it very difficult for a person to speak clearly. So when Courtney does talk it’s usually in single words and she is very difficult to understand to most people especially when out of context.

So as exciting as it is to hear her words, she is still very dependent on her talker to communicate her wants and needs. We forgot to charge Courtney’s talker last night so we sent the charger to school with her so they can charge it some. School forgot to send the charger home and the talker died. So tonight Courtney was without words. It quickly became quite the reminder that without her talker she is basically without the ability to express her wants and needs. Her dad put it perfectly after telling him the talker is dead. His comment was, “so she has no words tonight. How will we know what she wants?” This is our autism.

This is our autism, day 26

Finding caregivers…I’ll do a post about how amazing our nanny is but today’s post is about how autism can Bahrain it very difficult to find a caregiver. Long story short, we need a new caregiver come fall and for a family like ours, it is VERY difficult to find the right one. It can be hard to swallow when giving a little bit of information about your child’s needs actually scares people away. I’m glad they are honest with us upfront but hard to swallow. This is our autism!

This is our autism, day 25

The stroller…we recently went about getting a special need’s stroller for Courtney. We decided to get one for several reasons; she can be one to run away from us or wonder, stroller rides are very calming for her so helps when we want to take her to places that may be extra stimulating, and most importantly it’s another way to keep her safe. This is our autism.

This is our autism, day 24

Play dates….This is what play dates look like. Even play dates with cousins. Alyssa is off playing with the other kids and Courtney chooses to be by herself. It’s important to note Courtney is choosing this. The others are not leaving her out. She finds a toy or object that calms her and she stays away from others. It often breaks my heart to watch her isolate herself but if that’s what keeps her happy in settings that are uncomfortable for her, then so be it. This is our autism.

This is our autism, day 23

Alyssa’s headphones…there are many times you will also find Alyssa in headphones. Courtney can be very loud. She makes a loud licking noise when licking toys and she makes a lot of random and loud noises when she’s really happy. Alyssa can not tolerate these noises at all! We’ve had to work hard with Alyssa on this because stopping Courtney from making these noises is an impossible task. So, sometimes she also wears headphones. If you were to ask Alyssa what the hardest part of being an autism sibling she will say her sister’s noises. This is our autism.

This is our autism, day 22

Sleep…sleep has been a struggle for Courtney since day 1. It took me forever to get her to sleep through the night. She still won’t fall asleep without me (or a trusted adult) next to her. We’ve gone through so many phases with her sleep. It use to take me several hours to get her to fall asleep in her room. Then the only place I could get her to fall asleep is in my room and then I’d carry her to her room. There were phases where car rides were needed to put her to sleep. She’s always been one where if she wakes up in the middle of the night she’s awake for hours.

Sleep currently is the best it’s ever been in some ways. Thanks to melatonin it only takes 45 minutes to get her to fall asleep and most nights she will sleep 9 hours. But sleep is only next to me all night long now. Anything to get our family sleep. This is our autism.

This is our autism, day 21

Daily sheet…By first grade most children will come home and if parents ask enough of the right questions they may actually find out what their child did at school and how their day went. No matter what questions i ask, Courtney will not tell me. She does not have the ability to. So I rely on this sheet filled out by her teacher. It tells me what she did and how her day went. And because of autism, it’s not always a happy report. This has been a tougher week. This is our autism.

Autism: A Little Wild