In some “battles” there is no score keeping, no one-upping, no points for the wittiest comeback.
In some “battles” the participants are children. Children who sometimes can not even speak for themselves. Who need help from those around them to speak up when something is wrong.
Because they can’t.
To make standing up for a child who is unable to do so into a win-lose situation is wrong.
In some issues there is no winner or loser. For the ones who have “lost” have nothing to lose. They are simply amazing children who have been dealt an additional roadblock called autism.
I’m so sorry you’re so discouraged of late, but I certainly understand why…it is soul draining to battle corporations, and there are also some aspects of soul drain in raising a child on the spectrum…
I’d like to offer you the thought that when I look back on the experience of raising my own son on the spectrum, Danny, which I’ve been doing now for 25 years (Time sure flies when you’re early intervening!), it seems clear to me that the most difficult aspects of raising Danny were reacting to society’s take on my child and the roadblocks thrown up by others that had to be removed before we could move forward with our lives together.
It sounds so easy, “removing roadblocks,” but it is so hard breaking down barriers to places that wouldn’t welcome him (from mainstream kindergarten to birthday parties); it was actually like sculpting rock with fingernail, and I do remember those days well because your words bring me back…
When you grow old life steals things from you: your eyesight, hearing and waistline to name just a precious few, but one thing growing older offers is the opportunity for wisdom from experience, if you choose to take it…I have chosen to lead a spare life where my wisdom and love are about all I pack away in my little carry on bags when I travel, tucked right next to my packages of gum and paperback novels, and what I know about raising Danny is that the pain of this experience came mostly from blasting my own paradigms into smithereens and then fashioning news ones capable of fitting in all that life raising a child on the autism spectrum can offer…
How much can that be, you may wonder? For it is deceiving; the work done to raise a child with autism, especially when they are young; is sometimes backbreaking, but more often simply patience trying…for one year of his life Danny would enter any room he saw and sweep everything on any level surface right to the floor: like my husband, he hates clutter! If I had turned this into a power struggle we may never have recovered, for in these small battles with our children no one really wins or loses; it was me who had to “offer it up” as my mom would say (or “suck it up” as my husband would mutter), but the point is that on the way to convincing Danny that to live comfortably together he had to tolerate a bit of clutter I first had to convince myself that I needed to let go of the notion that children should obey, or even listen, to my own rules on what to do with cluttered tables or supposedly misbehaving children.
Children with autism force you to reevaluate all your priorities…to prune when you’d rather flourish, sit quietly when you want to explode, take pride in what others assume your ashamed of; it’s a very confusing experience, emotionally and socially speaking, to raise a child on the spectrum…
Society should help, and I do believe we are getting there; babies with autism that shared the nursery with me were routinely institutionalized, when my own son was diagnosed nearly a quarter century ago many still bought into the theory of “refrigerator mother” as the cause of my son’s poor eye contact and difficulty relating to others…we now know autism is biologically driven, but we still don’t understand how much society enters into any child with autism’s chances for happiness (or their families’).
Children with autism are the tiniest and most honest non conformers, and this truth can be what sets you free…to understand the value of not conforming mindlessly in our culture, to fight for our children’s rights in a society still so steeped in prejudice against people with autism that few understand they are saturated with it, to wake up renewed and ready to enter the brave new world of autism when you never asked to be there in the first place…
Did Danny really lose when dealt the hand of autism? I don’t think so. I believe that he is every bit as accomplished as any 25 year old in his graduate program at USC, with his close circle of friends and cozy place in my own heart, but this was just Danny’s particular path and I personally hold no special pride simply because he got into a good school: he is happy and fulfilled, and this was always the main goal, in an important way, the only one…once I gave up wanting my coffee table clutter to remain undisturbed, once I gave up caring what my neighbor thought (the same day, coincidentally, I gave up hating my neighbor), and once I focused on the child before me rather than the child I was wishing I had, I was then not only on the best path for Danny to take to a happy and healthy adulthood, but on the best path for me to be happy once again as well…
This time, as opposed to the rather tense happiness of living up to other’s expectations I dimly recall from my youth, I am happy for what is good and true about myself and my son. Some days this happiness, this tolerance and acceptance of life in it’s raw form, breaks loose and I love everyone I see; other days I stumble upon an event or experience that throws me back to my younger self, gets my Irish up, and forces me to lace up my boxing gloves for yet another round with society, perhaps to spend more time shadow boxing with my own preconceived notions…
Pepsi and Global Giving, are you listening? It’s you and I in the ring this morning and I have decided I won’t stop fighting until you make it right for “the Pepsi Ten.” What makes me most angry this morning is the fact that rather than supporting these families in their quest to swim upstream, socially speaking, and raise their children with differences to a happy and healthy adulthood, they’ve been scammed via their efforts to do so…scammed by an individual, perhaps, but also in the process of being scammed by the greed and anonymity of corporations…
Allison, they are not as powerful as you think. And what’s in your heart for your child? Way stronger than you know…
Keep the faith!
Patty Dobbs Gross
North Star Foundation
We help children find their way.
I do not beleive that a family has already “lost” when dealt the hand of autism. I know the most beautiful 4 year old girl with autism who has taught me more about life than many adults ever could. She is perfect just the way she is and it is society’s problem with ignorance that is the issue. We need to speak up and help each other understand and embrace the positives that these beautiful young people bring to our lives. I have personally been given the gift of meeting so many wonderful people as a result of this little girl and our journey to help her achieve all that she can in life living with her special needs. We all have quirks and “special needs”, some just more than others. It is how you percieve the issue and what you do with it that determines whether you “win” or “lose”. I hope that you can find your blessings in this journey instead of focusing on the negative. I am not sure if this responds to your whole comment above. I am specifically replying regarding the comment of “For the ones who have “lost” have nothing to lose. They already “lost” when dealt the hand of autism.” I beleive that these children are a gift and they are given to the most special of parents.
Hi Heather, I can see how that statement came across wrong. I was referring to already having society place roadblocks up. Children with autism already have so much to overcome, it made me sad that someone made these precious children into a win/lose. My daughter, and every child I have met are amazing, precious people. My life has been blessed to have Faith in it. She has taught me so much about what is really important in life. She has shown me how to find joy in the smallest victory. She has taught me how to laugh loudly. I only wish that other could see all they overcome. Her life is NOT a battle for someone to make into a win-lose. I’ll see if I can re-word that to better convey what I am saying.
I know just what you mean, but believe me when I tell you I actually spent a large amount of time feeling like I lost something after Danny was diagnosed due to the limitations that a child with autism places on a parent’s life and the incredible demands they make on time, energy and patience…a young child with autism needs a super parent, two of them actually, 24/7, and few of us would even want to be this perfect…that is exactly the reason society should help rather than hinder this work of helping a child with autism to reach his or her potential; certainly we’re all in agreement they should not be scammed, disappointed or put at risk…
~ Patty Dobbs Gross
North Star Foundation