Courtney’s use and understanding of language continues to blossom in so many ways. As I have shared, recently see started using two word requests on her talker, such as “want milk” or “want iPad”. She’s even done a 3 word request!

We are also starting to see her use her talker independently in other ways besides asking for items that she wants. She’s using it more to tell us she needs a break from something that is hard or she doesn’t want to do. She’s using it to tell us when she is all done with something. My favorite text came from her BCBA to tell me that she was virtually observing a therapy session of hers. The BCBA was on her therapist”s iPad. Courtney wanted to play on her therapist’s iPad so she used her talker to say, “all done, goodbye”. She wanted the BCBA off zoom so she can play on that iPad. Yes, she logged off immediately!

Both her home team and school team have been working very hard for a while now on her identifying feelings, specifically her own. They are trying to teach Courtney that instead of showing us she’s mad by ring aggressive towards people, she can tell us she’s mad or frustrated. Today we got a pretty cool sign that all the hard work is paying off! A therapist was working with her. Courtney was enjoying a break and playing with this teddy bear puzzle we have. It has different teddy bears with the faces showing different feelings. Courtney was playing with two of the heads and was verbally saying something over and over. Her therapist couldn’t understand her so promoted her to use her talker. Courtney touched “mad” and “sad”. Look at the bears faces! They are most definitely “mad” and “sad”! I wasn’t there for this awesome moment but of course the therapist sent me a text immediately so I can celebrate! I couldn’t be more proud!

I got home from work tonight and was quickly throwing some leftovers together for dinner since Courtney and I had a tele-therapy session. Alyssa came up to me with a serious look on her face and said, “mommy, I’m afraid nobody loves me”. Sadden by this comment I quick reassured her that she is very loved but I did ask her why she felt this way. Without needing time to think she replied, “because Savannah (nanny) has to help Courtney with school and can’t play with me”. Now completely heartbroken, I reminded her that Savannah loves her very much. I also reminded her that Savannah also helps her with school. Alyssa then reminded me that sometimes they have school (zoom) at the same time and she has to do it herself and Savannah also has to keep taking Courtney off things she’s climbing.

I fully realize that little kids at this age can say the darnedest things but there is so much truth behind her statement. Savannah does have to spend the majority of the day helping Courtney with school. Courtney is unable to attend zooms or complete school without full assistance. Well most preschoolers Alyssa had My dad and I were talking the other day about how young kids with loved ones with special

I mentioned in a previous post that Alyssa recently started seeing a psychologist. The emotions and behaviors that come along with being a sibling of a child with autism is definitely a major focus. These sessions are via zoom and they include me. Alyssa looks forward to these sessions as she also knows it’s an hour of uninterrupted mommy time. We are working at finding more uninterrupted mommy time but definitely a work in progress.

Oh Alyssa, know you are loved so much by so many. You light up every room you enter. You are truly a special little girl.

Over this Thanksgiving break, Alyssa was extra attached to me so it required Joe to be on “Courtney duty” more since she basically always needs someone watching her.their time together basically became joe being a human jungle gym. The giggles I would hear coming from whatever room they were in just made me smile. Then with the extreme giggles, you would then hear Joe shout, “no biting”, “ouch, that hurt”, “no scratching”. For Courtney, the extreme giggles can be just as aggressive as her extreme angry times. She gets so overstimulated by her giggles that she just starts biting and pinching. You can tell that it frustrated joe that these fun moments would turn into his face being scratched but he sure enjoys making her so happy.

My family did a “what I’m thankful for” zoom. Each of us shared 3 things we were grateful for. There was one rule, which I actually didn’t follow, you couldn’t say family. So today on Thanksgiving, I figured I would share here what my 3 things were.

1. Here’s where I didn’t follow the rules. I’m thankful for Courtney and Alyssa. Actually, I think what I meant to say is I’m thankful to be here with Courtney and Alyssa. Not a day goes by where I don’t realize the miracle of me still being here with them because 5 years ago that opportunity was almost taken away from my family. For that, I am thankful.

2. Communication Devices. I am so thankful for communication devices. Though Courtney has words, they can be hard to understand and she pretty much never uses her voice to communicate her wants and needs. Thanks to communication devices, Courtney is able to tell us what she wants at any give time. For a mom and a teacher of children who are non-verbal, it’s an amazing thing! for that I am thankful!

3. Team Cranston. I couldn’t be more thankful for all the people who help keep my family moving forward. This is a large team. It’s a team of caregivers, loved ones, friends, teachers, therapists and babysitters. Without each and everyone of these people, I’m pretty sure my family wouldn’t be where we are today. During these crazy and uncertain times we have needed to lean on Team Cranston more than ever and have had to find creative ways to do that. Covid 19 has not stopped this this family from thriving and staying happy in the process. There have been some big bumps and bruises along the way, but Team Cranston has been there to help support and love us each and every step. For that, I am beyond thankful for.

Thanksgiving is very different this year. I’ve struggled with it some too. But then I realized what is important. My family is happy and healthy and honestly, that’s all that matters. Happy Thanksgiving everyone!

Courtney has been using a device since she was 3. She quickly learned how to use it to request her favorite items such as food and specific toys. After a while she learned how to label colors and other items.

We’ve been stuck at one word phrases for the most part this whole time. We’ve been working on using 2-3 word phrases for a while now. Now and then we would see some increase in this but for the most part Courtney just uses one word phrases to communicate with us with her talker.

As of recent, she is more spontaneous with using two word requests! Meaning instead of just saying “milk” with her talker, she is now saying “want milk”. We are only seeing it with the carrier phrase “want” but baby steps!!! So proud, Courtney!!!

Covid sucks. Yep, just going to start off with that proclamation. It sucks. It sucks that we can’t celebrate thanksgiving and Christmas in person with out loved ones. It sucks because people are dying alone. It sucks because it’s unraveled so much ugliness between people just because they differ in opinion. As a special needs mom and special needs educator it sucks watching the effects it’s having on some of the most vulnerable children. IT SUCKS!

I have students who can’t come in because they can’t wear a mask. Covid sucks! Teaching in person is not what it use to be and that is hard. Covid Sucks! I have students who have been in but now being put back in remote because of cases increasing and I will likely not see them on zoom because of other reasons. Covid sucks! I have students doing remote and no matter how hard the parents try to make it work, it isn’t. Covid sucks! I have a 5 year old daughter who hasn’t seen the inside of a school since March. Her anxiety is getting the best of her and so is her sister to the point that she is seeing a psychologist weekly…via zoom of course. Covid sucks! I have a 7 year old with severe autism who only gets to go in school twice a week, unable to wear a mask and no understanding of why her world has been turned upside down. Her only way of showing her frustration is by pinching, scratching, biting herself or anyone near her. And not just a few times. We are talking 60-70 times a day. There have been days where it was over 100 times. COVID SUCKS!!!! Sorry…making post rated R…F#%@ COVID!

Originally this post was going to be how we put a request in to Courtney’s school for them to consider increasing how many days she goes in person and how today we learned our request was denied. My frustration turned this post into how much Covid sucks because honestly, that’s the only thing at fault. My heart breaks for Courtney and others like her. I of course am so grateful she is healthy and thriving thanks to the hard work of so many people. But this little girl needs to be in school. Covid Sucks.

A while back I started noticing some anxiety in Alyssa. Most of it revolved around her food allergies. I mean, who wouldn’t have anxiety when just 2 bites of a sandwich sent you in anaphylactic shock? The poor thing became so anxious about every bite of food she took and it just broke my heart. Though that has gotten better, she has limited her greatly because she is afraid to try anything new.

Food hasn’t been the only time I was seeing her anxiety creep up. Alyssa has always struggled with separation anxiety but over time it continues to increase instead of decrease. I am able to pinpoint why some of this separation anxiety has increased but overcoming it has not been easy. We have also noticed over time that “traumatic” experiences in general stick with her longer than usual.

Our biggest struggle of recent has been her inability to tolerate some of Courtney’s behaviors, specifically all the noises Courtney makes. When I say inability to tolerate, I mean full blown tantrums that end in her hitting and pushing Courtney. I have really struggled with these behaviors. These noises are who Courtney is and it’s not as simple as, teach Courtney not to make these noises. On the flip side, I feel Alyssa’s feelings about these noises need to be respected too. Of course, thanks to Covid, Alyssa doesn’t get any breaks from her sister so it has been very difficult. With the help of both girl’s school teams we have tried a few different strategies. If you were to enter my house at a given time, you may find both girls sitting in separate rooms with cool pink head phones on. That’s how we roll here!

For a lot of Alyssa’s behaviors, I have kept putting it off as your typical 4 year old but at as of recently I started realizing, Alyssa is not your typical 4 (almost 5) year old. She is a little girl trying to manage the world with severe food allergies, asthma, AND a big sister with significant needs. There is nothing “typical” about that. So…we decided it was time to focus on her mental health. I’m excited about the step we took this weekend and it was confirmed, she definitely struggles with anxiety and we have a plan in place to address it. Autism doesn’t just effect the child, it effects the whole family and I don’t mean that in a bad way. This is our journey as a family and we will make sure all our needs are met along the way.

Watching Courtney with my mom is always beautiful. They spent a lot of time together when Courtney was a baby since she was one of her caregivers while I was at work. But their bond is deeper than that.

Courtney is not the first child with autism my mom fell in love with. In fact, there were probably more than 100 before her. My mom was an autism teacher and one of the best ones out there. Couldn’t be more perfect that when she retired from being an Autism Teacher over 7 years ago right before Courtney was born that she would soon after that become an Autism Grandma.

I listen to a few different autism podcasts and sometimes moms of older children are sharing stories of what it’s like when the a child with autism is no longer a child. Lately, this has had me thinking. Courtney’s 7 and yes, those teenager years and beyond are still several years away but we are getting closer and I can’t help wonder, what would it be like when she’s older?

Someone close to us said to me recently after we had to wrestle Courtney out of the car, “I worry about her when she’s older”. I knew exactly what she meant by that and I worry too. What did this person mean by that?

Back story…I can remember vividly receiving an email from Courtney’s pre-school teacher just shortly after she turned 3 that she bit an adult in the classroom and it broke skin. We had just started seeing some of this behavior at home but hearing it happened at school broke my heart. My little girl was becoming aggressive. Friends and family would tell me not worry because even “typical” kids would go through a biting phase at this age. While trying not to worry, I did work with the school right away to start working on a plan to diminish this behavior.

Four years later and this “phase” is still a huge part of our daily struggle and worse than it has ever been (thank you Covid). So why do I worry about when she gets older? Aggressive behaviors exhibited by a 45 lb 7 year old will look a lot different when she becomes a 100 lb teenager. If you have spent any time with my little girl you know she is as strong as an ox. She’s only 7! This doesn’t cause me to worry, this scares me. Fortunately Courtney has an amazing team both at school and home to help us continue to find a way to decrease these behaviors and give her other ways to express her frustrations while be insanely patient and understanding.

I was Listening to our home district’s board meeting the other night, I once again found my self feeling so many different emotions. The teacher in me listened to the parents speak out of frustration on how remote learning is just not working. It hurt knowing that no matter how hard teachers like me were working, these parents were mad. The parent in me was shouting, yes, I agree, open up the schools because children like Courtney need to be in person. Then the best news came when they talked about how the next phase of the plan changed some and preschool and some elementary grade students will start in person as early as mid October! That includes both Alyssa and Courtney! A load came off my shoulders as I thought to myself, “we can handle a few more weeks”.

Then came Tuesday. I truly feel like the world came crashing down on me. A couple weeks back we submitted a form to Courtney’s school that was filled out by Her pediatrician to medically excuse Courtney from wearing a mask. Now we didn’t expect her to be completely excused. We had this form filled out so she can still be in school when the time came while we continue to work on her wearing a mask. On Tuesday we had a meeting for what we thought was to put in Courtney’s IEP that she was excused from wearing a mask but what we were told was that they were denying her medical exemption.

What does that mean for her? Honestly, the assistant principal didn’t even know the answer that question. The only thing they could tell me was at this point the district is following the IDPH guidelines and the only ones who can be exempt are those who have medical contraindications meaning they can’t breathe with the mask on and can’t remove the mask on their own. So what did I “hear” when I was told this? My daughter isn’t going back in person for more than 2 hours a week (which is what she is currently doing) any time soon.

I get all sides of this “are schools safe” argument. I truly do. I’ve watched schools open successfully, I’ve seen schools already have some issues. I’ve watched preschool teachers transform their classrooms into rooms that don’t look like preschool anymore. I watched Courtney’s teacher dress up as a surgeon so she can teach Courtney for 2 hours! I know front line workers who say it’s not safe and I know front line workers who say open schools. I have close friends who have lost loved ones to the virus. I’ve had loved ones who have had the virus and doing fine. We’ve had scared within my little family of 4. I GET ALL SIDES!

But there is one thing that’s braking my heart to the point of emotional breakdowns a couple times a day. Everyone agrees the most vulnerable children need to be in person NOW. I am a teacher of those that are most vulnerable and I’m a mother of the most vulnerable and I’m seeing examples on both sides of the most vulnerable not able to go in because of their inability to tolerate a mask and that is hard to swallow. It is hard to just sit back and watch. That is wrong. I may be putting myself out there too much with this post but it is too close to my heart.

Courtney is lucky. She has 2 parents who are teachers. One of which has studied Autism. She had a kick ass nanny who is finding a way to make this all work and a team of teachers and therapists standing behind us. But even with all that support, Courtney is struggling. What about those who don’t have this support? Where does it leave them? This breaks my heart. So…when you say get the most vulnerable back. Make sure you don’t forget about ALL of the most vulnerable!