Autism and the Happy Medium: Yes, It Is Possible!
I realize that virtually every parent who visits a site like this one, and takes their child's autism seriously, cares deeply about their child. And ALL good parents - no matter what their children's abilities or challenges - are working to help their children find their strengths, plan for their futures, and overcome limitations that make their lives less fulfilling. Sometimes parents find that behavioral and developmental treatments are hugely helpful for their children with autism. Sometimes parents find that changes in diet and nutrition make a positive difference.
The term "mother warrior," though, takes good parenting to what I suspect are often unhealthy extremes. To me, at least, the term "mother warrior" implies a person whose life is dedicated to "fighting tooth and nail" (and leaving no stone unturned no matter what's under it). A "warrior mother" (or father) deliberately and intentionally sets aside any desire for moderation, accommodation or acceptance. There's no parley for autism - nor for teachers, doctors, therapists, insurance companies, or parents with different points of view.
In theory, the whole point of "fighting" autism is to ensure that the child with autism will be able to live a full, rich life. Yet for some families living with autism, life revolves around nothing but therapies, doctor visits, and sleep. Instead of exploring the world together, or even watching football together, these families are living in a state of permanent anxiety and constant vigilance. There's simply no time or energy left to take their children with (or without) autism for a walk in the woods... or even to spend an hour playing together just because it's fun.
Bottom line, here's my point. I'm suggesting that we, as parents, can do two things: BOTH help our children to grow and thrive AND enjoy our lives together. I'm saying we can do ABA or Floortime or GFCF diets and supplements AND go to the beach. And the truth is, if our children with autism spend their childhoods in doctors offices, therapy centers and classrooms - they will never, ever have a chance to discover what they love, what they're good at, or what matters to them as human beings.
Comments
I whole-heartedly agree with you.
Though, I’ve had a child who exhibited signs of autism and medical challenges and delay from the very first days of her life. It’s harder to say all that you’ve said (in some ways) to families who had children developing perfectly typical, only to watch them regress dramatically after 18 months or two years of smiles and words and activity. I can’t completely imagine how difficult it is to watch this happen to your child and not fervently wish for a “magic bullet” that might bring their child back to where they were when they were developing typically. I can’t imagine my happy, smiling two year old boy not ask “why” or say “love you!” or smile after 24 wonderful, full months of seeing him do so. I can see how some see it like a cancer to fight when it regresses so dramatically. I’m not saying I agree with the Warrior Mother ideology (or the cancer analogy) but I do see where their passion might come from.
With my daughter, she’s always been this way. I’d like to always seek out ways to be sure her life includes assistance that helps her to the maximum, but I also want to be sure she simply enjoys life. I feel the same of my healthy, typically developing son, but I think I might feel it more passionately if I were to watch him “disappear” after seeing him experience life in so many usual, expected ways.
We all just want to see our kids healthy and happy. I don’t believe that most parents want a “perfect” child. I do think most parents want their child to live life to their fullest extent and it’s unbelievably difficult to watch a child lose skills, words, emotions, abilities and seemingly so, personality and NOT want to do everything possible to see them gain these back. I wouldn’t go to the lengths some families have, but then, I have never walked in their shoes.
Happy medium will never move the mainstream off center. Warrior Mom and Dads also means that we are fighting to end the epidemic. It is amazing how much time there is in a day when you lose your job and many of the social functions are off limits due to the behavior and actions of your child with autism.
Proud of being a Warrior Dad!
Boundaries, Hierarchy, and Politics Concerning the Autism Epidemic
http://www.causecast.org/member/tanners-dad/blog_posts/439
Tanner’s Dad - You have made a personal choice to be a political activist. Having read your blog and writings, I know that’s because you are certain in your own mind that there is an autism epidemic caused by vaccines. If I were as certain as you are about these issues, I’d probably be a political activist as well.
Lisa (autism guide)
Warrior parent(s) is just a nice Hollywood term. At one time it was termed a hero. The way I see it, Warrior Parent(s) is a glorified term used to make what is chosen more acceptable to others. If it meant anything at all, parents would just do it and not need to have such a title for it. Every parent no matter who their kids are, is just that and in the eyes of the child, we’re all hero’s. No matter what the disability, all parents struggle and we who have children with autism may or may not struggle more, but we’re no higher up than any other parent.
At one time early on, we were that busy with therapies. Considering to add another I wondered just when is there time just to be a kid?? I was so happy the first year ESY did not happen. Half the stress in life is getting any where on time and then dealing with parts of the day which I wasn’t with my child to know why he had such a hard day. If my kid spent all his days at school and therapies, he’s never learn how to be just a kid or learn how to be part of a family.
Regardless of the idea of the autism epidemic, some children like my own is still going to have autism. The fight and war should go beyond therapies, and onto a better future for those whose autism is going to be life-long.
After reading the posts on your last warrior piece and those on the Examiner I am scratching my head over how you made the leap that warrior parents were somehow not living life with their children. These are all separate conversations.
ABA trains the mind
Biomed treats the body
Filling the evenings and weekends with life adventures is everything else.
Love needs no special definition
When you wonder why more people don’t sit down with their children with autism and watch a football game together it makes me wonder if you have ever met an autistic child. Apparently your personal experience is in a range of the spectrum I am less familiar with. Heck, I can’t get my child who does not have autism to sit down and watch a game. Finding appropriate engaging activities (or downtime) to share for a child with a disability requires as much warrior energy as anything else. Typically the obvious big autism day events “designed” for family fun are not the ones that work for us due to noise/sensory reasons, so we do things that work for us. Standard parenting just doesn’t get the job done. Exhausting? Yes. Is it worth it to watch your children grow? Absolutely. In the process I have also grown as well and have more to offer both my family and my community.
All4Ben - I have a feeling we’re crossing wires.
My point is that there are quite a few parents out there (and I have met my share) for whom the “autism war” is as close to all-consuming is is physically possible. These are folks who have spent all their savings, mortgaged their homes, and quit all outside activities in order to provide therapy for their children. Some of these kids are in therapy for ten or twelve hours a day, seven days a week. These same parents may also be in due process with their school districts, paying for advocates and lawyers, and also raising other children.
IMHO, this is not a good thing - for the parents or the children.
To be honest, we’re not big football watchers. But we do a lot of things with our son on the spectrum (and with our typically developing daughter) that have nothing specifically to do with treating autism. In our case, those things include bowling, swimming, hiking, and occasionally volunteering to care for animals in a nature center. We also watch TV together, go to the YMCA, go to the beach, and so forth.
Not every child with autism can or will do all these things. But the best way to find out what works for a child (any child) is to offer them a variety of opportunities. I was amazed to discover that my son actually WANTED to take tennis lessons! Who’d've thought??
Lisa (autism guide)
Given that my adult career was facilitated by the use of words; either as a high school English teacher or professional theater, I continue to be fascinated by language.
Little did I know that I would eventually have a child with autism, and language, both expressive and receptive would have paramount importance.
However, all of the semantics involved in describing parents who fight for their child’s progress tends to be exhausting. I played on the significance of “A” Word when I originated my blog:
THE A WORD
There is an intangible fear that resides in the gut. Perhaps the most visceral response from a parent of a child with developmental delays is a resounding NO! It’s not autism!
Not THE A WORD! The diagnosis A-typical is an A word, but not really THE A WORD. Cut to the next A word, Acceptance. We see, we hear, we know, we deny the A word. Slowly, an indiscernible presence enters our hearts. Admission. Are we admitting the presence of this Adversary? Are we Adapting to the A word? Are we Abstaining? Who Absconded with our child?
Lots of A words to be reckoned with.
I am my son’s Ally! I will Adapt to his life, and will never Abandon him. I Appreciate him. I Adore him. I Applaud him.
Autism is our enemy. Our Arsenal remains stocked with countless therapies and interventions.
We Advocate for our child. He Advocates for himself in this Arena of Autism. There is no Apathy or Ambivalence here. No Amnesty or Amity in my soul!
This is my Acclamation: to Aggravate, Assault, And Annihilate THE A WORD!
We are an Assembly of Audacious Advocates, we the parents of THE A WORD.
Does that make me a “warrior mom”, perhaps so, but only with the tenacity of a mother who wants to help her child.
I think the difference is how each feel about autism. I do not feel it is an enemy, and I personally think the best word that starts with an A is acceptance more so than annihilate. Any disorder a child may have is a shock to any parent but each must find their peace with autism and how it effects their child. One may find like many other things, children can improve but the disorder remains.
Removing autism from my child would be no more easier than to do a gender change.
TannersDad said, “It is amazing how much time there is in a day when you lose your job and many of the social functions are off limits due to the behavior and actions of your child with autism.”
Why is this the case?
Are you more concerned about how you will look in these social settings?
Nothing is off-limits for us because I don’t think folks have enough hutzpah to give us funny looks if my son does something “unusual”. No one’s huevos are that big!
There’s no way, in this lifetime, I would ever stand for my family feeling ostracized because of autism??? That seems a bit absurd to me.
It’s not the message I want my son to receive. It seems that is what you’re inculcating your lil’ guy with the ideas that there are certain places your son can and cannot be.
By keeping your son “away”, you are missing several opportunities to raise awareness.
You’re an awesome dad, and I know you only want what is best for Tanner. Just try not to close so many doors and windows on him.
I appreciate your point much better when you describe it that way, and I regret at least one line in my post. I just think it gets really tricky to be critical of the extremes of any parents approach, since autism is not just this one thing, there is no clear way out, yet we find some are making it through to the other side of the communication issue. Watching my son try to get through ABA sessions when he was 2 was really hard. He hated it. The urge to rescue him was overwhelming. I felt like we were pushing too hard yet we had just begun. He has worked and been worked incredibly hard for a little guy. I agree that an overwhelming process can go past the tipping point of what is healthy or wise. Its just hard to know when its time to rest, and I feel only the parents can make that choice for their own children and families. My child will likely out live me by 30 years. There are some extremes that I won’t pursue, but this is my chance to help. Now we’re off to swim!
Has anyone ever heard a parent, whose child dramatically regressed with autism after a year or more of typical development, say that they “accept” the autism as just part of who their child is?
Also, in Tanner’s dad’s defense…there are certain places we cannot take our child socially, not at all because of the stigma or worry of what other people think, but because of how much it really bothers my daughter to be out in those situations. It’s unfair to her for us to drag her all over the place just because we won’t let autism keep us down.
“Accepting” a child for who he is should never, IMHO, mean accepting that a child will not grow, change, develop, build skills, etc. Every child needs help becoming his or her best self - that’s what parenting is all about, isn’t it?
Whenever I get into this particular conversation, I find myself thinking of the book “The Lord of the Flies,” which is all about a society run by children who have never learned to manage their own raw emotions and desires. Scary stuff.
But helping our children to learn, grow and succeed should, I believe, incorporate two important elements.
First, we should allow ourselves to help our children without destroying our own sense of self, or undermining our own financial, physical or mental health.
Second, we should help our children not only to become more skilled, but also to become, for want of a better word, more fully human. It’s great to be able to behave well in a restaurant. But more important is to know ourselves as being a worthy, significant person in a world that is worth knowing better.
It has to be unbelievably difficult to become more fully human when we are the constant subject of anxiety, therapy, commands and evaluation. I really do think that everyone needs the opportunity to just take part in life. For some, that opportunity involves socializing; for others it involves communing with nature; and for still others it may involve simply observing the way the wind moves a leaf.
Lisa (autism guide)
Lisa,
Thanks for your insight and wisdom. I have posted a follow-up to my “I am not a warrior mom” post, hoping to explain with more clarity my thoughts on the subject.
–Kathleen Byrne, NY Schools Examiner, Examiner.com
To me the word ‘warrior’ in that phrase has now become interchangeable with the word ’soccer’. Notice how little of the typical ‘warrior mom’ rhetoric is about their child and how much is about the enormous sacrifices they’ve made.
Zzzzzzzz….
Adonya Wong: IT is not about what others think- it is about what the child experiences. Some of these kids have real sensory issues- being around others and new situations causes real distress- screaming,terrified- fear. Are you going to drag them around just to prove a point? Sure they need to get used to it- but there is nothing wrong with easing them into it.
Besides if you had a newborn baby who was screaming and crying in a movie theater you would take them out and nurture them- see to their needs- not sit there and say “he is a newborn deal with it” to all of the others watching. If my kid is terrified of a situation I am not going to have them stay there and tell everyone to deal with it at the expense of the child.
Now if the behavior is just strange and the child is not in distress- who cares what others think
Just another perspective.