Ever have those days that are laced with fear and uncertainty of how you are going to be able to support your child through something? The past 2 weeks was that for us.
Our sons Jacob and Noah, 9 year old twins with Autism, both had to have brain MRIs with sedation over the past week.
A scary process any day for a parent and child, especially for a child with Autism who can’t tell you how they feel and don’t quite understand what’s happening to them. First, there’s the process of having to wait for hours in a strange hospital, with nurses hooking you up to things that you don’t understand. Then having the IV placed in your arm – which of course is awful for any young child, but then add in not understanding what’s happening or being able to communicate. For parents, there’s the fear of the test results, and also the fear of the side effects of sedation, which with children with ASD we know can be significant.
Let’s add Covid-19 into the mix.
Aside from all of that… before even getting to the MRI these 2 also had to go through a visit to the pediatricians office for medical clearance, which isn’t fun on any day. But let’s add in that for the first time they have to wear masks, keep them on, and be surrounded by people wearing masks… not understanding why. (We did try social stories and lots of practice before hand, but while the practice definitely helped, for them… the stories don’t equate to understanding unfortunately).
Now if that wasn’t enough, thank you Covid…. one more step before the MRI…. they had to go 2 days before the procedure, to the hospital to get tested for Covid. So let’s add in some extra mask wearing and having people with masks coming up to you and sticking something up your nose… again, while they have no idea why it’s happening.
I’ll admit, while after many years of challenges, emotional roller coasters, uncertainty and surprises… I usually am fairly able to keep my calm and stay fairly even keeled and patient. But watching my son be wheeled away in the hospital bed, yelling “mama mama,” completely confused on what’s happening, scared and anxious… it got the best of me. Now I know logically, the nurses and techs were amazing and caring, and I had no doubt would do their best to calm him… but I also know, my son with ASD, high anxiety and OCD… limited communication skills and a propensity with meltdowns to become aggressive – it was terrifying to think they wouldn’t understand. I knew a short time later that they made it through – although they did let me know it took multiple people and he gave them “quite a fight”… he was safely sedated and in the test, and I was promised I would be there when he woke up to comfort him.
Left sitting in the “waiting room” hall, by myself, (only one parent was allowed into the hospital due to the Covid precautions, Randy had to wait in the car for the many hours it took. And they spread out all the procedures so there was only one family at a time). So I sat there in the desolate hall picturing my baby (yes I know he is 9 years old now, but sometimes he is still my baby) and wondering what he was thinking as he went in – the fear and confusion he must have felt. And then thinking of all the possibilities that may come from the results – and the real possibility of upcoming brain surgery. I let it all sink in… and cried. Tears of frustration, of fear and of love. Because as parents – that’s what we do! Every once in a while it all comes to a head and we have to let it out. And that’s ok!
As always - these boys amaze us!
Through ALL of that…. these 2 boys amazed us every single step of the way! As always, they came through each step a million times stronger and braver than we ever anticipated! While of course, they were scared and confused and anxious…. they were incredible. And I’m so proud of them for constantly teaching us and exceeding our expectations!
Let’s be clear – we prepared for the worst… and were ready to deal with full on melt downs, the physical restraint it was going to take, and had as many tricks in our bag we could have to help with the anxiety and unexpected. But amazingly, we only had to use a few.
Celebrate and Practice Gratitude... even in the hardest moments!
We just got the test results back and Jacob’s results came back normal! And Noah, while he has a Chiari Malformation, which we already knew… there hasn’t been any changes or progression since his MRI a few years ago and they are not recommending surgery!! We are so thankful to god for continuing to watch over them and for the miracles they are!!!
Autism does not define them. It may create some challenges for them, and let’s be honest – some challenges, fear and frustration for all of us. But we will celebrate their amazing qualities and strengths, celebrate all of the small miracles we see every day and do everything we can to help them live the fullest and happiest life imaginable. They will teach us all!
To other parents out there struggling … our kids are stronger and more resilient then we ever expect or give them credit for. Have faith and while some days may be tough, and scary and confusing… other days will be glorious and amazing!! Be thankful for both️. Without the tough days, you may never realize how strong you truly are, or how incredibly brave and resilient your child is. Together… We got this!
