Several studies have shown that parents of children with autism experience more “high aggravation and rage” than parents of any other special needs. There are “unique stresses” with our group.
Yesterday,I had my first mammogram since my cancer treatments started about 2 years ago. Breast cancer does not run in our family and advanced stages of rare triple negative breast cancer is very serious. I know three other moms of children on the spectrum that also have developed serious health issues. This is not a coincidence. The stress is real and I believe that this leads to a higher risk of disease.
Like many of you, I became a very vigilant mom in order to help my son. I studied various theories and read research. I was guided by others to look into Applied Behavior Analysis and hired a therapist. Then we hired a speech pathologist and an Occupational Therapist. Of course there were many doctors-the pediatricians, the developmental pediatrician, the dyslexia specialist, the neurologist, the cardiac pediatrician, the allergist, the chiropractor, the psychologist and the list goes on and on…. Just managing my son’s appointments and shuttling him around required a great amount of time and energy.
My career as a teacher had to end.
I did not want to quit. It was my outlet to see other people, get a check , and feel appreciated. Dragging my son to various therapies and working with him was an uphill fight. He was aggressive, violent and defiant. My husband was not on board with the ABA and often sabotaged the plan. I struggled to find answers and luckily I met a few moms along the way as well as my behavior analyst that kept me sane. My mom witnessed one of my son’s daily melt downs and she passed out. She told me that if she had had a child like him, she could not have dealt with it. (I told her that I was not given a choice.)
I heard the story from another wonderful mom of her going to an autism support group. The ladies were introducing themselves and sharing their children’s diagnoses. She said that her son had Asperger’s and one of the group members said, “You are so lucky!!! Your son just has a few behavior skills to learn!” My friend hid the bruises on her arms and left the group.
When you throw in the responsibilities of other children, meals to prepare, and household chores you have galaxies of more issues and stress. Most of us feel guilty for not being able to give as much to our other children.
Siblings are often jealous that they are ignored or expected to help more. I made the mistake of trying to accommodate them too much. I found myself exhausted , angry and depressed. I quit going to the gym regularly because it was too hard. I needed to sleep when I could but that didn’t seem to help a lot either. I tried medications but they seemed to make me worse. My ship was sinking and it seemed that no one in my family could swim. My dog paddling around was not enough to sustain us.
Fighting the school lead to a major distrust and feeling of isolation. I could not go to church services with a child acting out. Joining community activities was nearly impossible. Just going out to eat was a huge challenge. The only thing left-isolation.
My life as I knew it ,was gone.
Somehow I started reading novels out loud to my son and when he finally allowed himself to delay his anger and fear for a chapter or two, we were able to see patterns in the stories and then he could not get enough. I would read from sunup to sundown and be totally hoarse. But, something was changing and I just went with this new thing. I had to rebuild my life with lots of new things.
Eventually all the work was making progress and my son was able to handle school without the daily dramas and fights. We moved to Texas and thankfully my son has continued to be successful even in public school. We don’t have any more specialists.
The years of stress had taken its toll and when I was diagnosed with cancer I was very angry. How can the work of being a super ninja mom, sustaining the family under fire, and battling the system for my child’s rights end this way?
There was an old country song that said, “Work your fingers to the bone, and what do you get? Boney fingers, boney fingers!”
If you can relate to any of my story, please know that you are not alone. You have not done anything wrong. “The struggle is real.” takes on new meaning for us.
Yesterday was terrifying because they found something in the mammogram. Even after an aggressive schedule of chemo, a modified mastectomy, 7 weeks of radiation, daily meditation, eating healthy foods, and strenuous exercise -something was amiss. As they worked the ultrasound, my body started to shake and I felt myself preparing for more bad news. This time I wondered if there would be no more fighting. I was pretty numb when the radiologist announced that it looked benign.
My thoughts are with the other moms that are on this path. Maybe God can use me to help someone else. This is the message I hope to spread :
Take care of the care giver!
The message is not enough. The WAY of taking care of the care giver is the real puzzle to solve.
I know that you have read articles about taking care of yourself first, setting limits, keeping balance, focusing on gratitude, joining support groups, getting help from professional mental health counselors, yoga, mediation, and spending time with hobbies.
These things are helpful BUT this knowledge is not enough!
I am working on a game that will reinforce the behaviors you need in order to navigate the world of Aspergers with a more positive, powerful and enlightened center of being. Yep….that is my goal. It is coming into reality and I am excited about sharing it!
For now, please know that your work is not in vain. There is a higher purpose than what we may not be able to see at the moment. We are sisters bound together by common struggles in a new world. We are pioneers. Lets play together to survive and thrive!
You are more than you can even imagine. Please accept my respect and love for who you are! A new day is dawning…
This was the card my daughter made for me two years ago as my chemo was completed: