Wednesday, April 20, 2011

Autism in the Century of Self (Including Self)

April is "Autism Awareness" month. In other words, Autism Speaks, a "non-profit" organization will use well intentioned donations to fund their over paid employees and have the Empire State Building "light it up blue" while continuing to bury the truth about vaccines and autism. Last week I found myself more than aware of this so called autism, in particular it's effects on this self obsessed society (or should I say, the effects on it). How much are we really helping by giving to a "charity" like this? You may give 5 hard earned dollars to Autism Speaks because Kobe Bryant says "autism speaks.. it's time to listen", (well if Kobe says it it must be true, right?) Meanwhile having no idea that the next door neighbors you complained about for making too much noise have a child with autism that is no more responsible for the noise he makes then his inability to speak.

Oh yes.. I'm bitter. Last week I received an anonymous note from a neighbor proclaiming not only that my son's noise caused by his vocal stimming was a problem but that I in fact am a bad mother because of it. Sure, I can be the devil's advocate and agree that it is probably very annoying to hear him yammering especially on a hot day while the windows are open or he's playing outside on the porch. I can also agree that he may spend sometime out there and to a neighbor wanting to tune into that afternoon's episode of Dr. Phil or take that midday nap this is going to be an issue. This note however, proclaimed to have concerns over the well-being of my son while insinuating that if the noise didn't stop then efforts would be made to have us evicted or even Child Protection Services maybe contacted. Concern??? Really??? I guess concern for a child's well being is to try and have him removed from a loving home into some government agency where he is twice as likely to die and is 4 times more likely to be sexually abused. Let me preface this by saying that at no time did any of my neighbors knock on the door and say "can you keep the noise down?" In other words my first contact with this neighbor (that I'm aware of) was in the form of an extremely hostile, accusatory letter posted on my door while I was taking my son to school.

During introverted reflections, I ask myself "is this my fault?" Sure I can be blamed for the noise but allowing my son to play on the porch is no more neglectful then any of us allowing our children to sit down and watch a movie or play in their room alone for a couple hours. Oh believe me, I can go on beating myself up about all the ways that I'm not perfect. There are numerous mistakes I've made in life and in motherhood. Countless times I just needed to be alone or I opted to talk to my girlfriend on the phone for an hour over playing with my kids. I know.. I'm a monster, right? Even taking this time now to write a post could be construed as selfish. However, what I'm thinking about today is this society as a whole (myself included) with regards to our lack of compassion for one another, over sweeping judgments and denial about our true selves. Sure I maybe guilty of being a poor neighbor, I won't deny that. Was it thoughtful of me to allow my son to make noise outside on hot day? Probably not. Should I have endured the air conditioning bill on our already overextended finances and kept him inside? Maybe. Or better yet, stop whatever so called important things I was doing and take him to the beach? Definitely.

I am reminded of a story about the first time I took the kids on an outing alone after Aydan was born. Here I am with a newborn and a two year old at the drugstore developing baby pictures. Aydan is a couple weeks old and is in his car seat which I locked into the shopping cart; that my oldest (Avery) up until then had always sat in but was now being forced to walk. Pushing the cart with one hand, holding the two year old's hand with the other, the baby starts to cry.. louder and louDER and LOUDER!!! We're standing at the photo counter watching two employees in the back who appear to be chatting away; yet, no one has come to take my order. Finally, one of the employees comes to the counter while several shoppers are starring at the out of control baby and the mother who can't handle her kids, I start to lift Aydan out of his chair in an attempt to stop the crying. At this moment my 2 year old darts towards the door following another 2 year old (I guess he wanted to play). The employee says to me "there he goes.." Yeah, thanks lady where were you 20 minutes ago when I first got here? Anyway, just as Avery is 2 feet away from the front door and I am trying to chase him down with a 13 pound crying newborn in my arms, a woman in her 50's with short blonde hair kneels down to a child's height and stops Avery from running outside. I bend along with her, out of breath, sweating up a storm and humiliated. She looks me in the eye and says "I know this is hard.." Even now as I remember this day tears fill my eyes. Yes, it is hard. I found myself overwhelmed by the kindness of this stranger. She did not glare at me, role her eyes or condemn me for being a bad mother. She offered a hand instead but much more than that, she offered understanding.

How did we get to this place where such an act is not the norm but a call for tears? Elvis Costello once asked "What's so funny 'bout peace, love and understanding?" Does anyone know? It seems to be the knee jerk reaction by most to judge, condemn and call the "authorities". Praising the nanny state, demanding that funds not be cut for such social services that are to "intervene" with "bad parenting".. Well, why is it government's job to raise our children (and I mean, all of our children)? What about us? I ask this question to all parents but particularly to autism parents, can you imagine the improvement in the quality of your life if a neighbor offered an hour of their time to take your child to the park while you took a nap on a regular basis? Do you think we'd hear as many tragic stories about mothers murdering their children?

This business with my neighbor is hardly an isolated incident for parents especially those who have children with special needs. Constantly we are being accused of not doing enough, doing too much or neglect because we don't choose to feed our kids crap, shove drugs down their throats or vaccinate; such as the now famous story of Detroit mother Maryanne Godboldo. A good friend of mine recently found out that an old babysitter (respite worker) is being accused of child molestation. She understandably became upset and while reading the news article, she noticed that many of the comments underneath were condemning the parents of all people making statements such as "look at him, how could anyone let him into their home..." Why? Why? Why? How in Gods' green earth can it be the parents' fault for an outside party being a child molester? Don't even get me started on the vaccine judgments. To the pro-vaxing zealots we're negligent for not wanting to vaccinate, to some of the anti-vaxers in the natural health community we should be sued or accused of child abuse for having had our children vaccinated in the first place. I can't even begin to repeat all of the anecdotal stories from parents about CPS removals from the home because of gluten/casein free diets or being falsely accused of abuse because of colic and on and on... Whatever happened to sympathy? If the child's crying or tantruming stop judging and think for a second "he may have autism". Even if he doesn't ask the parents if there's anything you can do to help; even if there's nothing you can do, even if the parents' don't want your help, even if you don't agree with their parenting style and even if there's nothing in it for you.. or me.

Resources for this post are as follows:
-Invisible Children:
-In-Home Caregiver Accused of Molesting Autistic Boy:,0,6355101.story
-SWAT Attacks Home School Mom for Refusing to Force Med Child:
-UPDATED for 2009 - Autism Speaks: Where The Money Goes: