Disclaimer: I know that many of you, wonderful people, support parents of special needs children. You do it through your kind generosity, words of encouragement, smiles and consideration and I am very grateful. The following letter is not meant for you.
I wanted to write you this letter to express a few things that I think you should know, with the hope that you might understand (Perhaps just a tiny bit) the kind of life that parents with children with autism live every day and the impact (Positive and negative) that you might have in our lives.
Sometimes you see me at the grocery store and you stare at my 8 year old boy who seems strangely anxious to you, I can tell that you want to say something. Sometimes you see me at a fast food restaurant trying to calm down my youngest son who is overwhelmed by sounds and people as he is unable to stay still. In that very crucial moment when I cannot think about anything else but help my boy who is having an autistic meltdown, you feel the need to say something. You talk about “spoiling” my children; you talk about “pampering” them and of course, the classic: “They need licks to straighten them out one time”. Even after I tell you that they have autism and you claim to know what it is, your unsolicited advice does not change.
Sometimes you even tell me that you do not have any children on the spectrum but that you know a few parents who do and apparently that makes you an autism expert. Sorry but “knowing” a few children with autism and living it 24/7 are two different things. Unless you personally have a child on the autism spectrum (And not just a friend or relative) then you really do not know what is like -plain and simple.
Now, don’t misunderstand me I do get you, you believe in the concept of “it takes a village to raise a child” to rationalize your assumptions about my children, but you see, the villagers do not understand autism and I am not asking you to be an adoptive or extended parent for my own children.
You have to understand that during the times that you seem to believe that you are Ms. Or Mr. Parent of the Year and have the need to tell a complete stranger how they should raise their own children, I had probably 3 or 4 hours of sleep (If that much) and certainly not because I was out the night before partying with friends but because for the past 15 years, I have been dealing with something so absurdly wearying, demanding and overwhelming called, “AUTISM”. So I’m sorry if I get extremely exasperated when I have to hear the fetid pile of garbage that sometimes you throw my way for no reason. I certainly do not deserve it.
I am very proud to tell you without any shame that I dedicate MY ENTIRE LIFE to my children and I work extremely hard in order to help them develop their talents and reach their full potential. But you cannot see that. You do not see my sleepless nights, my struggles in trying to find a school where there are qualified teachers who can help my boys, my constant research in trying to find caring therapists who do not see me or my kids as “an appointment for $1,000 in fees” but those who truly dedicate their lives to help special needs children (And I know there are out there) without being so greedy and hardhearted that they are not ashamed to ask for preposterous prices under the mantle of “caring for autism”.
You do not see my many tears of overwhelming emotions after a very long and stressful day and the hurt knowing that sometimes doing my very best isn’t enough when you see your children struggling to achieve things that most people take for granted, especially in a country that offers very little resources. If there is something I deserve along with every parent of a special needs child is nothing but support, kindness, encouragement, help and understanding. And if you cannot or wish not to provide any of these things, it is better to remain quiet. Believe it or not, as much as I try to understand you and try hard not to judge your intention, there are days I just cannot deal with it. And no, you do not have to keep repeating what you said to me. I heard you perfectly fine the first time. I am just purposely ignoring you.
You do not know this but I heard it all. People comparing the seriousness of my situation with the seriousness of someone trying to remodel a living room (Nope, I am not making it up it happened not too long ago) or people telling me while looking at my eyes that my situation is NOT going to change so they cannot see how they could help me (Yes, this also happened not too long ago) oh and by the way, thank you very much for reminding me that I will probably deal with extreme stress for the rest of my life.
What’s the purpose of saying things such as these if not to hurt or demean others? Is it that when we see someone down instead of offering a hand to lift them up and try to make their lives easier to cope with, we believe we should kick them hard while they are down? How you make others feel says a lot about you. How you make a parent of a special needs child feel says even more.
You might think and say that my children are loud, rude, noisy and inconsiderate but they are not, they have autism. What is your excuse for the same behavior?
I know well that you do not know what is like to live my life but you know what? It does not stop you from being a little thoughtful towards others. It does not stop you from showing some mercy, compassion and understanding.
Bernard Beltzer said once: “Before you speak ask yourself if what you are going to say is true, is kind, is necessary, is helpful. If the answer is no, maybe what you are about to say should be left unsaid.”
They say the tongue has no bones, but is strong enough to break a heart. How many hearts have your tongue broke? How many hearts have your tongue uplifted? It is not too late.
Exhausted Mom of 3 children with autism