No time to Sleep
We pulled an all nighter
And not like college kids partying but instead like an amazing young man and his tired mom, so excited to be at his lake house with his parents and no caregivers that he just can’t sleep.
As I spent the majority of the night awake I started thinking to myself that it’s all about perspective - is it fun to not really sleep from 11pm on? Not really- is it trying at times- yes!
But, is it amazing to have someone so obsessed about being with you that they honestly can’t sleep? I wish you could see his face in the middle of the night and hear him humming his happy hum - when you put it in perspective it is a blessing
The road of sleep with Dylan has been a long one/ and it’s caused a lot of stress, wrinkles and fights with Kevin over the years. Dylan was a perfect baby that took great naps and slept thru the night at 8 weeks old but somewhere around 3 yrs old or so that stopped and continued to get worse. For 17 years it was almost like having a newborn. Dylan would be up off and on all night and usually for good by 4am. That is super hard to sustain but we are made to do hard things. People used to say to me you are so strong. I really wasn’t. I didn’t have a choice so I did what I had to do. It doesn’t have anything to do with being strong. I never felt strong and I often felt sorry for myself and jealous of what I thought were “ normal families”
I’m writing about sleep today because it is so important yet so many parents of individuals with autism are not sleeping. We all understand and sympathize with a new mom but there are moms with 20 even 30 year olds that don’t get a good night of sleep. It becomes a way of life for them but not a great life. This is only one of the many concerns of parents raising their adult children with Autism. It is not the normal progression of raising children to still deal with toddler like issues into adulthood.
I don’t have Dylan living with me any longer and I live for these trips to the lake. I live to be around his energy with all that entails. So when he decides to sleep from 9pm to 11pm and Kevin says I don’t know what to tell you I decided to tell myself- you’ve got this Amy and you are blessed. I am blessed that Dylan is mine, I am blessed that Dylan lives in his own home, I am blessed to have amazing people on my side such as Jimmy Sutman, Dylan’s caregivers and the employees of Purple Cat. I am blessed that Dylan is healthy. I am blessed that people believed in me when we created our non profit Dylan’s House . I’m going to help families gain an independent life for their children and start to have the life they so very much deserve.
Won’t you take a minute to count your many blessings and meet us, join us, give back.
Thank you for reading my latest blog- written in the middle of the night 😘