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!

We were given some frustrating news yesterday at an iep meeting. I’m still trying to process my thoughts over it all because it’s effecting me as a mom and me as a teacher and it’s leaving me fealing defeated during this awful pandemic that has turned everyone’s world upside down.

I was trying to decide what to wear today and I came the shirt posted in the picture. I will share more once I wrap my head around it all but until then, Courtney, I am your voice, I see your struggles and I will fight for what you need. To all those parents in this similar fight with me, we’ve got this!

Courtney went in to school today for 2 hours. My nerves were a wreck. You would of thought it was her first day of school, ever! It looks like she is being taught by a surgeon and as a parent and a teacher it does break my heart some to see a classroom look like this. But none the less she got to see her teacher…in person!

We continue to keep plugging along with remote learning here at the Cranston house. There’s been a lot of blood, sweat and tears (and that’s not figuratively speaking) and one Covid scare but we are making the best of it. We owe most of our success with it to Savannah. Not sure how we would do this without her!

Now that we’ve got this routine somewhat figured out, it’s time for it to change again. Time for the next phase for some of us. I have so many emotions about these coming changes but I strongly believe these changes need to happen and all who are involved are ready.

I’ll dedicate another post to what the next phases entail for Alyssa, Joe and I. This post is focusing on Courtney’s next phase. Starting Monday, Courtney gets to go into school for 2 hours once a week. Like the rest of the world, Courtney left school on March 13th, 2020 and has not stepped foot in her school building since. Learning did not stop. Her teachers, therapists and caregivers have busted their butts to keep it going not only during the spring, but summer also. Just the thought of her seeing her teacher again makes me cry. I only wish I was the one dropping her off on Monday so I can give the biggest air hug ever to her amazing teacher.

See, it’s not only about what she has done since last spring for Courtney to make sure she is still making progress. It’s about what she is about to do for Courtney. Courtney is not wearing a mask yet. She will tolerate it for a couple minutes but then that is it. I go from being so excited that she finally gets to spend some face to face time with her teacher to questioning if I’m a horrible person for sending her when she can not follow school procedures. This is so hard as a special needs mom and a special needs teacher. The schools that started off remote are starting to open up for the most vulnerable students. Students with the most severe needs. Yet it’s these students who struggle the most with the mask wearing. Let’s just say, I cry a lot these days.

So how are they doing this safely with Courtney? I got a social story from Courtney’s teacher. It is a story showing Courtney a picture of her teacher without a mask or anything. The next page shows her with her mask on. Then the next page she adds her face shield. The next page she adds a gown that a surgeon would wear and the last picture she adds the gloves. She sent this story so she doesn’t scare Courtney. When she e-mailed me this story, she said, “Be nice, they are not the most flattering pictures! But you got to do what you got to do, right?” With tears in my eyes, I replied back, “You look like an amazing teacher who is ready to welcome my little girl, who is unable to follow guidelines, with open arms and I couldn’t be more grateful!”

So to Courtney’s school team, thank you for all you are doing. There are not enough words to explain how much you mean to us. Stay safe!

Remote learning for the Cranston house is in full swing. All 4 of us. There’s been a lot of bumps and bruises (and scratches, pinches, bites and thrown iPads) to start but we are slowly getting a routine down and finding ways to make this crazy difficult time work.

The original plan was for me to work from home as much as possible to help our nanny, Savannah manage the girl’s remote learning. That isn’t going as planned. The first week that both girls were on-line ended with Savannah nicely kicking me out of my house. Why? Let’s just say it was Alyssa doing the iPad throwing. It’s nothing new, but Alyssa acts different when I’m around. When I’m around there’s separation anxiety, there’s whining, there’s more dependency and so on. When I’m not around, a little angel appears. Savannah definitely wondered if she could manage both remote plans on her own but it had to be easier without the behaviors so back to school I went. And she was right! iPads are no longer flying.

Courtney’s remote learning has been hard. There’s definitely been a lot of aggression and meltdowns BUT with Savannah by her side, they are surviving and learning is happening.

It was not easy handing over the rains completely to Savannah. There’s a lot of mom guilt. I wish so bad I could be of some help but my helping is from a distance cheering them on dealing with the behind the scenes part of it all.

I shared with my friend that I was struggling with the mom guilt because I’m expecting so much out of Savannah (and my in-laws on Friday’s) and she shared with me a motto her family had. This motto actually reminded me of a phrase my dad always used when I was younger. When it came to cleaning up the house, he would tell his 10 children, “if we all work together it will take 5 minutes.” Of course when I was little I thought he was crazy because there was no way you could clean our house in 5 minutes. But obviously that wasn’t the real point. The point is, a hard task is easier when you all work together. It takes a village and my village is stepping up in ways I will forever be grateful for!

Seven years ago tonight, joe and I went to our favorite Mexican restaurant. That night we were just a married couple enjoying our last night as just that. The next day we became parents. Parents of our beautiful Courtney.

Seven years ago we knew we were about to start an amazing adventure but there was no preparing us for the adventure we were truly about to embark. Seven years ago we new we were about to be parents but we had no idea we were about to become autism parents. Seven years ago we were about to become mommy and daddy but we didn’t know the effort it would take for her to say mommy or daddy. Seven years ago we were prepared for the ups and downs of parenting but we were not prepared for the ups and downs, the struggles and celebrations, the laughter and tears and the complete joy of parenting a child with autism. And here we are, seven years later, enjoying the same meal and excited to celebrate our special 7 year old tomorrow.

Oh Courtney, as we celebrate you and the past 7 years, as unprepared as we were that night, we wouldn’t trade the journey you have brought us on and continue to take us on for the world. We love you, Courtney Cathryn! Happy night before your birthday!