Firsts

 

When your child can't communicate, you have a lot of "firsts" and they all feel as monumental as the first day of preschool or the first time you are away from each other - the first time you trust someone other than yourself to care for your baby. I know - he's almost a teenager but it doesn't get easier. If anything, it's harder the older he gets. I am used to being his voice and his advocate and anticipating his needs. And he's unbelievably awesome but he does comes with some challenges. I want other people to see the awesome - not the challenges. I want them to know him like I do and to care for him and protect him and really SEE him.

Today was a big first. He went in-person to 7th grade. Brand new school for him where he doesn't know anyone and they don't know him. And he has been home since March 13th. Almost SEVEN entire months where he has not left our sides. No separation. No independence. When you factor in a a scary health pandemic, it was more than a little nerve-wracking to let him go. 

But this kid - this amazing Rockstar of a kid walked straight into school without looking back. He slapped on a mask and acted as if he'd been doing this every day of his life. SO Brave. So incredibly resilient. I don't know how he does it - how do you face a world that doesn't understand you? I don't think I could. And he didn't just face it - he rocked it!  He came home with the biggest smile - full of  giggles and JOY.

It's strange and a little hard not knowing what he did all day after all this time together. I'm paranoid and overprotective and I guess I need to work on getting over that because there are no limits to what this young man can do. I am learning. He teaches me every day. Every single day. More than I could ever dream of teaching him. 

Autism & A Pandemic

In my wildest imagination, this is a title I never, ever could have dreamt up. As an Autism parent, I plan. Prepare. Plan. Practice. Plan. Repeat. And plan some more. The very simplest things require an obscene amount of preparation in an effort to prepare for the worst but hope for the best. We don't do anything on a whim. Something as simple as a haircut takes an exorbitant amount of preparation. And bigger things like swimming, traveling, even showering - well, we've been chipping away at them for years.

Lately, I've been prepping for a huge change for B. He was accepted into an Autism Charter school for next year. It's a lottery - only about 20 spots and it starts in 7th grade. I put him in the lottery knowing that if he were to ever get in, this was the time. But to be honest, I was kind of hoping he wouldn't get in so that I wouldn't have to make the decision. He has been doing so well and why rock the boat? His current "school"/therapy center has been his home for 4 years now. It's not perfect and this last year has been filled with many, many frustrations for me but he is HAPPY. He is happy to go every day and happy when he comes home. And I've let that be enough. We can't ask him how he feels about it so it also feels kind of mean to rip him away from everything and everyone he knows.

And then in January, we found out that he did, indeed get into this other program. And I was weighing the options. My biggest concern was that it doesn't go year-round. The primary selling point of his current program is that it is year-round. He never has more than a day or two off at a time for 365 days a year. The last time he was home in the summer was after 2nd grade and he ended up in the hospital. The lack of routine and structure was too much for him and he stopped eating and drinking and was hospitalized for dehydration. I'll spare the details but suffice it to say it is the single worst experience we have ever had with him. I still have some PTSD and nightmares.

But he's a different kid now. And I thought maybe we owed it to him to give this a shot. I've been planning and prepping - looking into summer programs he could do this year before it becomes a necessity. Making contingency plans. Timing when and how to notify his current program, how much to tell him and how etc. etc. Planning and worrying and losing sleep.

And then along came a pandemic. And B. is home with literally NOTHING to do. None of the normal things he does every weekend like swimming, going to Target, playing on the playground. And none of the extra things that I was planning for summer like camps and extra OT and speech and maybe even some fun new adventures.

And he is doing amazingly, shockingly well. Not without some tears and frustrations but I think we can all relate to that. He has never, ever in his life had this kind of unstructured time. It's unsettling for all of us and I thought it would be devastatingly hard, maybe impossible for him. He was my number one fear in this whole thing. I have no idea what he understands. I keep telling him we are trying to keep him and other people from getting sick and that this is TEMPORARY and eventually, life will go back to normal. At least that's my hope. We are on week 3. It has been 18 days since anyone besides us four have been in this house and 20 days since he last went to school...or anywhere at all for that matter. 20 days! He seems to have kind of settled into this new lack of routine. He is still finding and bringing us joy. He now can enjoy taking a very short walk around the block even though he can't go on the playgrounds. He has done 3 sessions of telehealth speech and OT with limited protesting. He is loving the extra baths - it fills some time and it's something he enjoys. He is still giddy for every meal even with the limited variety. He is watching movies, doing huge 1,000 piece puzzles and figuring out how to fill the time. Am I worried about regression and getting back on track? I'd be lying if I said no. But I'm not paralyzed with fear that he won't make it through. And I feel like he can absolutely handle changing schools and not having a year-round program. I actually think he will thrive. And that, my friends, is my silver lining to this whole crazy COVID-19 experience.

Be safe. Wash your hands. Love your people and give yourself a whole lot of grace right now.  And be like B. - find some joy in this weird, abnormal time. We will make it through.