There is no question of the greater amount of stress experienced by parents of these unique children. My son is now 16 years old and it has not been an easy road in raising him.
Recently he refused to leave his room to go with us to see a movie. He was tempted by the candy he could get there but he said it was not worth the three hours “wasted” outside of his room. I don’t always force issues because his grades are good, he is actively engaged with football and CrossFit and does help around the house occasionally. He covets his alone time and this seems to charge him up for the next week.
A friend of mine invited me to a college lecture on Pluto and she brought her 9 year old neurotypical child. He listened to the presentation, played around with another kid he had just met and then allowed the adults to chat and play with telescopes for another 2 hours. I was so shocked and felt a little sorry for myself. She had no behavior plan in place. There was no set reinforcement schedule, no prompting, no planning, no data collection and no stress. She just did what she wanted and he was fine left to his own accord. I was sort of jealous.
I was not sure what to do because I kept checking on him and was on edge waiting for some issue to happen. What melt down was about to happen that I needed to fend off? When did we need to change the focus? How long could this child endure compliance and social integration? I realized that even now, I am on edge when around children. For so long my agenda was secondary to meeting the needs of my son that it is difficult to gear down and relax!
Unless you are the care taker, you really have no idea what the short term and long term impact is. The few studies that have been conducted show a bleak picture of the high levels of stress and even rage parents experience. The health issues are real. We know this but what choice do we have? Even if you have the money to hire full time help, this does not guarantee a happy outcome and dependency never feels good.
Maybe you can relate to some of these common issues?
- blaming self for chid’s behavior
- blaming spouse for not being supportive or helpful
- blaming the school system for inappropriate programming
- blaming medicines and doctors that are irresponsible
- lack of social group for child
- lack of social connection with adult friends for self
- loss of career or lack of ability to dedicate self to personal interest due to child rearing demands
- incorrect diagnosis
- difficulty in transportation and time to shuttle child to therapies, schools, doctors, etc
- difficulties in scheduling with other family member needs
- lack of positive immediate family activities-peaceful shared meals, outings, vacations
- lack of positive extended family activities due to chid’s anxiety or behavior problems
- feelings of being blamed and judged by schools, family, and peers for child’s behavior
- anxiety overload and melt downs by child
- embarrassment when child is rude to others
- lack of time or energy for self interests
- physical exhaustion
- frustration when “experts” know less than you do about medicine, behavior plans, academic issues, etc
- stress of constant problem solving and energy depletion in management of child and family
- fear of the unknown future each day- dressing, eating, behavior at school, homework, lack of compliance, social issues, sibling issues, grades, disconnection, college, career, independency in the future?
I am not trying not add fuel to the fire but I just want you to know that I know what you are going through. I have been there, done that, but didn’t buy the t-shirt because I don’t like any of them I have seen so far. I don’t like “Autism Awareness”, blue light bulbs, and groups that “speak” for me. I am living it and I am struggling to keep my head above water and keep my family afloat at the same time. I am also tired. Very tired of worry, work, and anxiety. I thought life was supposed to be fun and beautiful. I still think it is but I have had some detours on the path.
My passion lies in helping other parents because you are the most important piece of this “puzzle” of autism. You are the key to true therapy. We can hire all the professionals we want but when it comes down to it, you are still the responsible one. You are being pulled into a black hole at times with too many demands, not enough answers and not enough support to get out!
I have been through some scary places– facing cancer and near death was not pleasant and the anger I felt is nothing to be proud of. I tried to negotiate with God that if I could try again, I would dedicate my life to help others and to not waste my life with so much negativity. So here I am. I want to follow through on my end by extending myself to people in the same dark places by offering some light to navigate better and move towards a more positive spot. I don’t have all the answers but I know the territory and want you to know that you are not alone. I also know that things can change without much warning.
We need the social network of schools. Our children need social reinforcement and connection to prepare them for the world. We aren’t doing them favors by enabling them to stay in their rooms forever.
We need special professionals that can help us see our children with different lenses. There are many gifted specialists that we need along the way. We must learn how to manage and delegate these services to maximize our window of opportunity of learning.
Most importantly we need to protect our very souls from being battered, bruised, wounded and beaten down. The problems don’t stop. You keep fixing the leaks that never end. We must find a way to dedicate ourselves but not totally depend on our children’s success as our own. Chaos never ends. I believe there is more to our lives than chasing the wind and hanging on. We have to breathe right now. Our spirits can be lost in the confusion.
We have to learn how to train our minds into accepting higher guidance. The answers may feel uncomfortable. We have to allow a new system in. Change is not easy. In fact the ego hates it. That is why we have to reboot and use a new system. Others have done it. They have taught it. Jesus, Buddha, and others have shown us how to see differently.
There is a reason that we can not see. We can get through this and fulfill this calling to find answers where there appears to be darkness. We can help each other. We are the heroes in our own lives. We have to save ourselves in order to save our kids and save the world. You are flawless. The real you deep inside knows what to do. We just need to remove the blocks that have gotten in the way of seeing the deeper truth.
I am creating an online class that may be helpful. “Parent Survival to Thrival”will offer support, structures, and activities to help you find your own path with more positive outcomes. Please send me an email if you are interested. (The first 4 people will get the program free.)