“Recently my inner circle of autism Mom friends have each been attacked by strange and serious autoimmune conditions. Their journeys and mine with Rheumatoid Arthritis have compelled me to write this blog.”
In the days after tragedy struck my life (my late husband and my father passed away in a small plane crash), I had an epiphany moment. This tremendous loss gave me permission to loosen autism’s vice on me. Something more significant had just presented itself and I was relieved to put autism on the back-burner. After all, autism was my constant obsession. If not trying to fix Gentry, I was trying to preserve her safety and defuse her aggression and tantrums. At the time she was a huge flight risk. In spite of all our vigilance…she had escaped twice where we had to call the police. Once she was found at the end of a dock getting ready to jump in no doubt were it not for the last minute inclination I had to put overalls on her backwards so she could not strip them off! The sensory nightmare of wet clothes was enough to stop her urges. We had just built a new home like Fort Knox. We always joked that we weren’t trying to keep people out, we were trying to lock them in!
I must confess that early on in my autism journey I obeyed the voice on my shoulder that pushed me to do anything and everything I could do to bring Gentry back to the happy and normally developing baby I knew her to be. I even recall going to a support group for mothers of children with autism where I met this young woman not much different from myself. I took note that she had recently had a pedicure. I am embarrassed to say that I judged her, not out-loud, but in my head I could not imagine how she justified such pampering while in the throws of autism. Nothing could be more noble than addressing my child’s needs…even at my own expense! Obviously, I had a lot to learn.
Research shows that the cortisol levels of mothers with aggressive children with autism are similar to combat soldiers returning from war (Maternal Cortisol Levels and Behavior Problems in Adolescents and Adults with ASD Marsha Mailick Seltzer, Jan S. Greenberg, […], and Robert S. Stawskiver). Ever on the lookout for dangerous situations a mother’s body gets stuck in fight or flight mode. Its like raising a toddler forever when it comes to vigilance. What God intended to help briefly boost our adrenaline for our safety instead becomes our normal state. It’s like a car stuck in all-terrain mode. It won’t take long for the motor to burn out. Our bodies are the same. If we don’t learn how to switch the fight or flight lever off, our bodies will fall into an inflammatory cascade. A walk on the beach or bike ride by yourself, taking time for yoga or meditation, attending a support group, reading a good book or simply doing whatever makes your heart happy all activate the vagus nerve that helps restore rest and balance to our tired bodies.
Looking back I would tell my younger self that this type of parenting journey is a marathon not a sprint and that caring for oneself is vital and necessary. It is not selfish but selfless in that when I am healthy those around me benefit too.
The lies still try to trap me…”You don’t spend enough time with your child, you really should try this new therapy, you have failed because you need so much help with your child, and the list goes on”. Basically, “If it’s gonna be, it’s up to me!” But is it? No! Burning myself into the grown isn’t a very good option. Asking for help is. Letting my beautiful child go into the hands of others who love her and do things differently is a benefit not an obstacle toward her personal growth. Not only this, I recognize that she is like all children, she wants a greater level of independence from me as she grows. No she didn’t get her license, sweet 16 birthday bash, or even homecoming or prom but independence is a normal right of passage too. It just looks different for a special needs child. It requires a village. The good news is, we have a village if we open our eyes to see it!
Peace of Heart Community desires to be part of your village. Being part of a group whose members share similar journeys and being in nature are both positive ways to nourish yourself. POHC has plans underway to be a destination location for our garden. We hope to be a reverse inclusion venue (a place where the community comes to us) where persons autism with autism and other disabilities are pursued and members of our community are welcomed. Our pathways will be paved so persons of all abilities can garden. It’s a community garden like none other where we are selling raised beds that our residents and volunteers will help seed, plant and care for. All you have to do is come pick your produce or we can pick and deliver it for you! We estimate that the beds will raise over twice in organic produce of their cost in a year’s time. Please reach out to Howard Groshell (699-2110) to learn more about buying a raised bed so our project not only grows but flourishes! Helping hands and donated material are also appreciated to finish out our raised bed project. 15 done 185 to go!
Belonging to a community of support and getting your hands dirty are good for your soul! Hope to see you in the garden!!!