Monday, March 25, 2013

What Does Autism Look Like?

“Happy families are all alike; every unhappy family is unhappy in its own way.”    ~Leo Tolstoy


Want to tick off a Spectrum Parent? Tell them the hated phrase, “but he doesn’t look autistic!”

What does autism look like? For our family it is: sleepless nights, tantrums without warning, high pitched talking and giggling, the need to line up toys throughout the house, inability to understand correct social interactions, repeating words and phrases, walking on tip toes, wanting to be near other children and play with them but then playing alone, lack of empathy, no fear of danger to self or others, inability to sit still and concentrate, sounds, sights, smells, touches, and some places are over stimulating to him and can set off meltdowns, behind his peers academically, emotionally, socially, and physically, his level of comprehension is that of a preschooler, aversion to certain foods, obsessively plays with only certain types of toys, does not play with toys correctly, refuses to potty train, aggressive behaviors toward others when things are not the way he feels they should be, seems to be “deaf” when called by name or told/asked to do something, takes long periods of time to calm once upset, multiple tantrums on a bad day, meltdowns that can last an hour or longer, routines have to be followed and if routine is off it can set him off for days or weeks. This is just some of the things that are a part of our world with autism with our son, Cameron.

Autism parents are told on multiple occasions “I don’t know how you do it!” Yeah, well we don’t either; we just do what we have to do because there is no other option. Our children cannot change who they are and that is part of autism. We can make sure they get the therapies they need to teach them coping skills, we can take them to doctors to make sure everything medically that can be done is being done, we can daily accommodate their needs to lessen the stresses that the world places on them. We cannot however cure them from their diagnosis. We can help them learn to manage their autism as they get older so that it does not manage them, but we cannot cure our children of this medical diagnosis.

When a child is diagnosed as autistic, I think all parents go through a grieving process. We grieve for the life we imagined for them, we grieve for the hardships they will endure being different in a world that has really truly not learned to accept everyone who is unique, we grieve for the loss of a normal childhood for them and for us as parents who hoped to enjoy all those momentous milestones with them. Once we get over our grieving process though most parents do one of two things. They either try to hide their children so no one knows they are different, pretending that the autism does not exist and will eventually go away. These parents act as though autism is something they should be afraid of, that it is a condition they caused their child, that maybe their child is being punished for something they did, or maybe even some (I hope not) resent their child and wish they did not have to deal with them. Then there are the other parents. The proud (again I hope) majority! We ban together to spread awareness, guard our children like lions and lionesses, seek out therapies and specialists to help us help our children, incorporate therapies into our home life, and pretty much turn ourselves inside out daily for the benefit of our children only to proceed to do so again the next day and every day after that.

Autism looks different in every child I have met. No two cases of autism are the same. There is no set way for autistic children to act. Each child has their own place on the spectrum. Think of it like a fingerprint, even twins have their own prints to differentiate them. Autistic children do not look a certain way; there are no defining physical characteristics. Happy families may all be alike, but autistic families are all unique in their own way.
Dani Wade

Thursday, March 7, 2013

Accepting the new normal

I wrote a blog entry on my own person page a few months back about acceptance and not being so judgmental. We all realize after we are the situation we are in that we at one point was that parent that stood there looking on at that family who had a child out of control screaming, crying and just being plain "terrible". Unbeknownst to us that this family is going through a heck of a time with a child who has special needs such as ASD and we are only seeing things from an outsiders perspective. I am going to post my link to my blog here so those of you who would like to read it can. It really opened my eyes to the person I was before this all happened. We are not bad people for thinking the way we did as we would never know to put ourselves in their shoes because who honestly thinks automatically that this child might have some sort of disorder that makes them behave the way they are? Now granted this isn't always the case with children but it just sort of makes you think before you judge in any situation now. Unless we fully understand the situation you can't judge and its not the right thing for us to even do.

This week I decided to open up my eyes and realize that no one can tell me my son does not have what he has unless they are a doctor. I think it was that moment when I decided to put the Walk Now for Autism Speaks poster up at work Tuesday that I finally realized who cares what others say! They don't know what we are going through and they might not be as educated in all this as I am so now it's time for me to begin educating those around me to include my co workers. Prior to this week I was still a bit in my denial mode. I figured people thought I was crazy and that there was no way my son had PDD. Heck I doubt half my co workers, friends and family know what it is so why I would let them get in my head is beyond me.

Tuesday after work I realized someone took down my poster threw it away and that is when it hit me. If I am going to do my very best for H and do all that I can to be supportive and advocate then I need to get over my own insecurities and be proud of who my son is! Here is my eye opening post I put on my son's Facebook page last night. I have received almost 800 views in the last 24 hours just for that one post. I really seemed to have hit the nail on the head with others in my shoes. This was the motivation I needed.

For those wondering I went and created my own flyers to put up in various spots at work and to those who don't care to support that is fine but you know what it doesn't matter I don't need their validation and their acknowledgment of what my son has. I have the piece of paper from his doctor I live with it daily.

I know this might sound crazy but it is something I must get off my chest. Since this whole road of our diagnosis began part of me lived in denial and let the thoughts and words of those around me influence how I felt about what was going on. I was more afraid of people think I was crazy for saying my son was on the spectrum and that every time they said " Are you sure he is Autistic? He doesn't seem like he is?" I let that get to me and question if this was all in my head. After today NO MORE! I will be proud of who Hunter is and when those around me question our diagnosis I will respond with " yes he is and this is what Autism looks like."
See there are many faces of Autism there is no look or set way Autistic children act. This is a SPECTRUM disorder meaning there are so many aspects and ways to diagnose. Who are we to let those who don't know begin to make us feel we need to question or second guess our diagnosis? Who are they who get to question those diagnosis given to these children? They are the ones who need to be educated and understand how much Autism awareness has evolved over the years.
So our house will be lighting it up Blue April 2nd, walking for Autism Speaks April 27th, joining support groups, being active in the Autism community, form support groups and become and advocate and educator to those who need it.