Today is my son’s birthday…. When he was born 36 years ago- i learned the meaning of “fussy baby”, constant worry and stress as my husband and I refined our sensory baby parenting skills…. This was not one’s typical fussy baby and the stress morphed from wanting our child to stop crying… to having friends, surviving school, getting a job…. Over the past 5 years we have lowered our expectations… on a good day- he may leave the house, tend to the bees and talk to other people without insulting them ….
The photo above shows a happy baby banging away on a typewriter that was capable of printing from our first clunky, modem screeching computer. Two years earlier I had completed my Master’s degree in occupational therapy and was well informed about “classical autism” the type where certain nonverbal individuals were thought to be the product of “refrigerator mothers”. I was also reading every book and article published by and about Temple Grandin who so beautifully explained the phenomenon known as “high functioning autism” or Asperger’s Syndrome. I really was a great mother and we gave our son a fun, nurturing and sensory/culturally rich childhood….
For the Special Parents …… 36 years later….
Last summer, we bought a house in a more affordable farming community in Massachusetts. We have enough land so that my son can raise bees (with my husband’s ongoing assistance). Now my husband and I have our private bathroom entered via the bedroom. We no longer share a wall between bedrooms and therefore, no longer worry that our son will complain if we chat too loudly. He has extremely keen hearing and since he seldom leaves the house- sensory deprivation seems to worsen sensitivities to everything. I’m not complaining, just explaining what I see….
In Massachusetts, adults with mental illness may or may not choose to accept therapy and/or medications. If a mentally ill person is in crisis, and a behavioral health hospital comes to the house- they will have the legal right to make a judgement on whether or not hospitalization is warranted. Hospitals generally keep a patient for 3 days and then send them home with a prescription (whether or not they can take care of themselves) . My husband and I have made the choice to avoid crises by avoiding conflict…. everyday we wake up saying “it is what it is… also drama is bad for my health!
My Coping Strategies….
People who never experienced the fear and stress that always accompanies parenting a mentally ill person can never comprehend our experience. …. Just as I will never appreciate the trauma of a veteran who may have lost limbs and/or returned home with PTSD. I would venture to say that all special needs parents suffer from PTSD , but we all have different coping mechanisms…..
- I choose to exercise and stretch excessively and everywhere I am (supermarkets, visiting friends etc. ) – because I have constant muscle tension and pain that no doctor, physical therapist, myofascial release therapist, acupuncturist or chiropractor has fixed…. although I am much better than I was during the pandemic when stress began attacking my body.
- I no longer tolerate relationships that create stress . I am a different person than the one I would have been if I had a healthy, happy parenting experience and independent adult child. But I don’t and I can only tolerate friends who recognize my limitations. My tolerance for annoying people, especially hubby’s friends, people I didn’t choose has hit rock bottom. Hubby simply has to see the friend 1:1 without the wives tagging along to make a foursome. Two of my closest friends also have mentally ill adult children. I have tried support groups, but found them depressing and frankly, I don’t like hearing about other people’s problems anymore…
- I eat a high protein/mostly plant based diet with very little sugar…. despite having a huge supply of honey! My husband loves farming- so I am simply a very lucky lady to live in a physically healthy, safe and green environment.
- I live in Massachusetts where marijuana is legal and in fact, my new farming community has 4 dispensaries. Chewies, brownies, vape, flower- if it has THC, it decreases physical pain and anxiety. I just wish that the stigma would go away. By the way, my farmer hubby grew my flower…..
- I am not afraid to tell people about our struggles. I am a retired occupational therapist and worried about the mental health crisis in America, perhaps the entire planet. There should be no shame in being afflicted with a mental illness. Obviously, some people can cope adequately with adversity and others cannot…. Society needs to recognize that if the country doesn’t support mental health nurses, social workers, therapists and counselors – we all as a nation suffer….
- I have always loved to write…. in fact I have published 4 books that center around occupational therapy and child development. I continue to blog and am thinking about how to write a memoir….. because the world needs memoirs. We need to understand other perspectives, helping to develop empathy and understanding.
- Like I just said, I’m “thinking” about writing a memoir. I avoid demands ( especially from me). I seldom plan more than 3 days in advance and try to limit social demands – such as meeting someone at a specific time. You might have guessed by now, that I am an introvert and find people exhausting….
- I think that aging creates an attitude of “What the F–k! ” because we realize eventually, we all end up in the same situation (of nonexistence) and all that matters is creating the best NOW possible. I have 3 friends who love to curse with me and other friends who are shocked by an occasional F bomb…. isn’t there a book about NOT giving a F..k!
- Maybe I will think of more coping strategies to add later…. and
- I have some OCD and prefer to have an even 10 coping strategies!!!!