Everyday is a challenge to avoid physical and mental pain, reduce anxiety and find joy- all related to my husband and I living with our 36 year old mentally ill son who is on the autism spectrum. He is unable to hold a job despite having a biology degree and completely dependent on us for his material and emotional survival. He refuses therapy, medication or even admitting that he needs help… Here we are almost 37 years ago.
I’m also a retired occupational therapist and author with my own sensory-based challenges that require avoiding crowds, noise and other types of overstimulation. The holiday season of Thanksgiving thru New Years -for me involves avoiding
- shopping (except for food),
- demands to be jolly and
- indulging in sweets and alcohol.
I also ignore the norms of gift giving and receiving to demonstrate my love at expected times of year… I am 70 years old and at this stage of life development- I prefer to buy what I want and not fret over hurting someone’s feelings because I don’t want their gifts….
If you relate or are parent to a child or adult with disabilities- take a sigh of relief! There is no need to make a New Year’s resolution- unless like me you are resolved to not make resolutions….
Here are some typical resolutions the media pushes….
… and here are the alternatives.
- Accept how you think and feel, even if you are different from the expected norm. Being positive is not a requirement.
- My only goal is to wake up and be as happy as possible. I avoid longer term goals! I also try to prioritize what pleases me and not others. This has involved ending demanding relationships. I only spend time with people who reduce rather than increase my anxiety and understand the stress of parenting a disabled child.
- I have lowered expectations and consider a good night sleep a huge success…
- I choose to eat what I consider a healthy diet (low cholesterol and sugar) – every single day because that helps me to feel as best as possible. I also create special occasions- such as chocolate ice cream on July 4th and fried shrimp on my birthday.
- I limit spending time with others. I am an introvert and refuse to let society tell me that extrovertism is better.
- I’ve learned to better accept small annoyances such as – clutter and daily spammers/scammers, food spoiling etc.
- I play Scrabble on my phone to ease stress of waiting on lines, actually just waiting- in general. This reduces my anxiety, but we all have different strategies.
- I recognize that I am not the person who I would have grown into if I had a loving, typically developing, successful child. I am what I am and must make the best of the situation I was given. Fortunately, my husband and I support each other in our daily challenges….
- I have no shame about about my own imperfections, the constant fidgeting and fidget toys, my humming, my need for alone time…
- Mental illness should not have stigma. I openly tell people about the mental illness in my family… Sharing is caring…
If you are still reading this post- you may be an “autism parent” or in the field and understand the trauma and ongoing PTSD that my family has experienced….and it never ends…
Accomplishment is Overrated!
My husband and I decided about 6 months ago that we would make minimal demands on our son- other than to maintain hygiene and avoid politics. We no longer expect him to have friends, work or accomplish anything. Accomplishment is overrated anyway…. He continues to care for his bees…. he is a bee whisperer …
Yesterday, my husband and I made a special needs trust. This is something that we have been planning to do for years but finally got it done!!!! It is a great long- term stress reducer and worth the time, money and short-term stress involved in thinking about our mortality and the paperwork. I will be sharing the lawyer’s info with friends and relatives… That means if hubby and I suddenly die in a car crash or become mentally incapable- my son or someone else simply calls the law office and actions kick in such as….
- my son will be given services after he is deemed mentally ill. Maybe he won’t be rejected from SSDI $ as he was last year….because the trust lawyers will be working on this …
- Bills will be paid and someone appointed to help him deal with personal decisions such as buying a car, accessing health insurance if his Medicaid is ever denied and finding a therapist if he is willing to accept one.
- Family members or friends may work with the trust lawyer if they choose to be involved in my son’s care. But nobody will be required to and the trust has oversights build into protecting my son’s financial and other interests.
I erred !- I am pro-accomplishment when it comes to creating a trust that reduces my anxiety and protects my son….
Creating a trust was not a New Year’s resolution. It was a once-in a lifetime stressful ordeal…. Everything stresses me out -because I am an Autism Mom. Hopefully, sharing this will help some of my readers…. and have a …
Happy New Years!!!
