Susan's Blog

Saturday, June 20, 2015

Grief Renewed

I didn’t get to just stick my toe into this river of pain, and test its temperature. No, I fell in, completely, Thursday afternoon, June 18, when our doctor told us that she thinks Nat has catatonia. It was a cruel flashback to 1993 when Nat was first diagnosed with autism. This very same doctor was actually the first one to use that term for Nat. He was three.

Yesterday I was strong. I was simply going to learn about this condition of Nat’s. Right away. I was not my 30 year old self, caught in a hurricane of ignorance and fear. I was not going to be sad, I told people. What good would that do? I’m going to fight this, I’m going to become an expert in it just like I always have with anything else Nat has developed. But when you fall into that river, you can’t simply get out. And that’s where I am. Wet, cold, tired. It’s not a rational thing, pain. It just happens. Your child is sick, you’re sick. You can’t bear what he might be feeling. You are him, but you’re also not.

The evil quality of pain, other than pain itself, is the way you can be lulled into feeling that it is over. I guess as humans we are naturally optimistic — we’d have to be, reproduction is the most basic expression of optimism there is — so we believe that something bad passes. I wonder if this is actually an illusion, and that nothing is linear in our lives. But, silly me, I thought that we were full steam ahead into autism adulthood and that my main concerns now would be making sure Nat enjoyed his life — his job, his apartment, his activities in the evenings and weekends. It’s been a pleasure watching him move into adulthood with such ease. I look back now and I see that it has gone really smoothly, even with all the housing tsuris. He has always had people around him who love him and also really like him, and he just thrives in that kind of light.
But something evil has crept into his neurons. His long curly clumped glorious neurons, that have always grown the way they wanted to, not according to the typical. As I type this, my chest tightens and the tears start again. My eyes already burn and are gray around the sockets. So much crying, in just two days of being on the island of Catatonia. I’m scared.

Nat caught me crying. I was upstairs, coming out of the bathroom, blowing my nose. His eyes locked on mine. I still have never seen eyes like his, so richly blue, so clear. He’s all right there in his eyes. Wild, innocent, knowing, not knowing. He makes eye contact better than any neurotypical person I know.

He grew very quiet, watching my tears. He knows me so well. He knows everything. He must know that he is experiencing something new and awful, and he can’t control it. He may even know that he is annoying at times but he can’t stop the spitting and laughing. His arms lock at his sides when he’s giggling uncontrollably, his head jerks downward as if he he trying to hold himself still.

His sweet Disney eyes tickle my heart, making it bloom again. There’s always more. My desire to wrap him in my arms propels me forward. “Nat,” I whisper, “Can I have a kiss?” As always, he turns his cheek towards me. I kiss him but it’s not enough. “Please, Darling, I need a hug.” I don’t know how hugs feel to him but I just. Can’t. Think. About. That. Now. I need it. And he stands and lets me hug him. I rest my head against his chest and I hear his heart skipping along like a little kid in the street. But then, to my surprise, he puts his arms around me and just stands there. He bears my weight on him. He does not pull away.



If it helps I know EXACTLY what you are going through. We are going through the exact same thing right now. My son started developing this last year. It has been unbelievably difficult and I too am grateful for the years of autism experience when it comes to being a pro at researching and having the experience of a diagnosis like this not be new but still, this one has hit hard as it affects every single thing in his life. The quality has diminished so much. I am now rethinking all aspects of his life and future. It is like learning what is best for him all over again. It is heartwrenching to watch the freezing and everything else that goes along with autism related catatonia.

— added by YCD on Saturday, June 20, 2015 at 4:05 pm

Susan, Words are so inadequate at times, but, for what it’s worth, God bless you & your family.

All Best,


— added by Michael Goldberg on Sunday, June 21, 2015 at 12:02 am

Hi Susan,
My heart goes out to you and your family. You have helped me so much through the years and my kids journey (they are both on the spectrum with co-morbities) and your advice has been invaluable. They are doing well despite their challenges, but who knows what tomorrow will bring? I’m not sure if I told you, their father passed away in the fall at 47 years of age. Anyway, I know you and your family will manage this with all of your best, but the feelings don’t just go away. Bottom line you love your son, and he loves you. It doesn’t get much better than that. Keep your chin up. Know that I send my support. Go Nat. He’s gotten through a lot. Keep getting the hugs from Nat and afar. You are a great mom and communicator. Truly I cannot thank you enough. Sending prayers and support.

— added by Julie on Sunday, June 21, 2015 at 2:59 am

You have helped so many of us in so many ways through your amazing words and the honesty they express. I am wishing for the right words to share to help ease your way out of the river you are in….I can only hope that knowing you are not alone will slow the currents a little…Wishing you and yours all the faith, hope and support.

— added by Nicole Staeheli on Monday, June 22, 2015 at 12:48 pm

%d bloggers like this: