When they say it takes a village to raise a child, they are right. They also are even more so when it comes to raising a child with autism or their sibling. I know I felt the village with Ashley and Nick, especially when living in Cleveland with a very close net neighborhood, but some how autism divides you from that and you feel alone in parenting, protecting, and trying to teach the world about your child with autism.
The parenting challenges of having a 12 year old, Emily, and a 11 year old, Austin, who has autism, today are are different than I had when Ashley, now 22, and Nick, now, 20, were 12 and 10 (and pre autism).
In the past, my big kids ran the neighborhood until the street lights came on, and had to obey all the parents in the neighborhood. Today my younger daughter plays close to home, her brother never leaves home with out a parent or adult close in tow, because of the safety concerns. The difference today is a way different type of parenting.
Yesterday we went to a birthday party for another child with autism at a local waterpark. Austin decided about 2 hours in that he no longer wished to keep his bathing suit on (a new behavior, that just recently started). I decided to take Austin back up to the cabana and put him in his street clothes. Austin sat quietly for a while, eating lunch and listening to is iTouch. Austin then indicated that he wished to go back in the water. He would not put his bathing suit back on and long story short, began to meltdown, screaming, pinching, hitting, etc.
I was told after the party, by the parent throwing the party, that she was proud of my composure as Austin was in a meltdown, because she is always the one managing a meltdown with her kids. She also said she felt helpless standing by.
Honestly her, the parents/families and therapists we were with did exactly what we needed, they just ignored the situation. They did not ignore the situation because they did not want to help, but instead because I had the situation under control. They knew that staring would not help the situation. Had Austin or I been in real physical danger all of them would have stepped in. We were in a safe environment, even though we were out in public, because we were among our peers.
The difference between what happened with my peers (other autism parents, etc) at this party and the rest of the parenting world or those peers of my past parenting life and even the people in my local community today, is huge!!! Earlier in the day at a local supermarket a similar situation lead to stares and questioning looks of my parenting, because who would "allow" their 11 year old to act this way and why was I not "disciplining him more".
This is generally why families like all of ours surround ourselves with families like ours. The same scenario at the grocery store DID NOT end with my having a calm composure. I will say I did yell out something like, 1 in 88 kids have autism, get used this! (And anyone who knows me knows it wasn't a quiet polite yell).
Another example of how the public and parents who don't understand or want to understand autism, is a melt down Austin had last summer which was way worse then yesterdays, and we were not amongst our peers. I definitely was in trouble and needed help, every person at the San Diego Zoo's Safari Park with in hearing or visual distance of us, including employees, stopped paying attention to the Cheetah Run presentation and instead stared. NOT ONE PERSON, other than the non autism family we were with offered help. It finally came down to the point where they had to bring a golf cart down to get us because there was no way I was getting Austin out of there. If the non autism family had not been there with us to go and ask someone to bring a cart, we may have never gotten safely out. By safely I mean Austin did not hurt him self, because he left marks on me. (See below pictures, of the bruises a few hours after it happened, I also had a nice set of teeth marks and a few bruises on my chest and chest bone that would be inappropriate to post pictures of).
The above stories sadden me, not because they happened to me. Instead they sadden of how little the world has changed since Austin received the diagnosis on June 15, 2004. The conservative numbers then were that 1 in 150 children had autism. The conservative numbers today say 1 in 88 child born in the year 2000 (age 12) have autism. Yet, in my opinion, the mainstream community hasn't become any more aware, or willing to step in and help out. This despite a massive Autism Speaks autism awareness campaign a few years back and no matter how many years people waste their time lighting it blue every April and donating to Autism Speaks. Some how the general public is still ignorant to autism and/or some how think they are immune to autism, and/or they think have no responsibility regarding autism. The general population still just sits on the side lines and stare, making the situation worse for everyone involved.
I write this particular blog for many reasons, one is that I hope that someone who is not my peer/autism parent reads this and learns something. Even if the lesson is as simple as turning away and ignoring the situation of a child with autism screeching at ear piercing sounds or when they are in the middle of meltdown. Or that it is OK to step over and say, to the parent of a child who is slapping/hitting/melting down, in a non-judgmental voice ask, "Is there anything I can do to help you?" I know sometimes it is hard to determined if it is appropriate to step in, but TRUST ME, your non judgmental effort, goes A LONG WAY in our world and in the quality of life that my child lives and even further in the quality of life of his siblings live!!! As parents, we signed up for what ever child we got, their siblings did not. Not having to deal with those "judging another parent" moments goes a long way for all of us in the situation.
I also write this because I hope that it reminds my fellow autism parents and siblings of that at the end of the day we might be fighting this individual battle alone, but we are definitely not alone. We have kindred spirits standing with us at all times, even if they are only there in spirit. I know reading and hearing about other parents and their life experiences with autism make me feel a little less alone!!!
In conclusion, I hope our communities stop being not part of the autism, and realize we are one world. Know that while autism may not be part of what you think is your "world", it is part of your world. It is coming to a family near you or to your family sooner and faster than you think. Educate yourself before it does. Help the families already in it! Make a difference in the world around you! Step outside your comfort zone.
Change doesn't happen somewhere else, change happens with you!! It happens with your thoughts, with your actions, with your attitude, and it happens when YOU MAKE IT HAPPEN!!
Until next time, thank you to all my friends with autism in their lives, because you remind me daily my family is NOT alone and a huge thank you to all our friends and family that do not have a child with autism, yet still brave the outside world with us, even though the looks and stares get overwhelming!!