When I started getting so sick a couple of months ago part of me was scared to ask for help. Not because I hate doctors (I do) but because I feared what would happen with Zach. You see he has a form of autism that came with regressions. Regressions are my biggest fear, we have had 2 major and a couple of minor. When he regresses it can be something as little as forgetting how to write his name, to losing all his potty training and self-care abilities. So, yes I am scared to upset his boat so to speak since I am never sure what will trigger a regression. When it came time to go to the hospital with chest pain I could no longer ignore, he was still my first worry. Every moment I spent there I was afraid what I would come home to.
Would he still talk?
Would he revert back to wandering?
What would we lose?He didn’t regress.
Every day I was there I would video call just so I could be present as much as possible for him.
Nothing is lost, HE DID OKAY!!
No, he did better than okay, he progressed.
While he spent several days angry with me after each time I returned. He got over it. The next two times I had to go back to the hospital he was better, he did better, he even progressed verbally!
Each trip was a little less stress for him and a little less worry about regression for me.
Before I went to the hospital the 1st time he was speaking in 3-4 word “sentences” and when I came back I was pretty sure they gave me the wrong meds or pod people had taken over the house. He would speak in paragraphs. We went from “Open this please”, to “Mom will you open this soda please, this is number two, I opened number one.” I was amazed.
Maybe I need to stress him more, push him more and fear regression just a little less. I don’t know. Like most every aspect of his autism, I can only guess, try and keep testing. Sometimes my guesses bring us further. Other times he gets stressed angry and frustrated or I do.
I wish I could see into his head, even with more words there is still not enough communication. Sure, he can tell me what we have worked on for years and better than ever. I still can’t understand when he needs things that are new. He doesn’t have the words to tell me he is sick or didn’t sleep well. He can’t tell me he is just frustrated because he is stuck in a game. He can’t just sit with me and chat about his day.
We are coming up on his 15 birthday and I still can’t communicate to him how important it is to just wipe when he poops. Yes, I rejoice in the words we have but I still mourn the ones we need. To be able to communicate with him, to just understand when something is hurting or too much. I dream of this. Don’t get me wrong I love him just the same. I just wish he could tell me why or who or how.
Someday, is what I tell myself when the frustration is overwhelming for either of us. Someday.. Someday it will happen. Because he is a warrior and a fighter and I will never ever give up on him. I just hope he doesn’t give up on me.
A special thank you to my older boys, you guys did an amazing job stepping up and taking care of the house and each other when I couldn’t. I love you all to the moon and back and I am so very lucky to be your Mom. Thanks to my husband for being there every day even when I was in the ICU for weeks and fighting when I couldn’t. To the friends who came to visit and brought me hope and love, I send my hope and love and to those who visited via the internet, thanks to my “not a group” friends, you know who you are, for the gifts that still brighten my days as I fight to recover. Tina, the flower pillow is amazing and makes me smile every day and giggle when someone realizes the flowers are not just flowers.and thanks to all the doctors nurses and therapist who worked to bring me home.thanks to all my family and friends who prayed for me
This was published in part here-