Little Boy First....Autism Second.

                  I was watching a short video of Temple Grandin this morning. An interview of her concerns for autism, being autistic and just flat out a force that commands respect, her opinion is one to listen to. There is always one thing about watching this woman that grabs my ears. When she talks about her mom’s role in her life she always addresses her as mother and says it in a way we should all know who she is. Not my mother or mom but just mother in the present. I see that as a huge insight to the role her mother played to getting her where she is today and how much she respects that.

                One of the things I see with autism is the confusion and a lost feeling for parents on how to deal with everyday situations that may come up. Once you have a diagnosis and a plan you still have to be the one person who provides the greatest source of guidance. No matter how many people you reach out to for advice or ideas, you know your child is unique to their own form of autism and after all is said and done you have to be the one unique form of guidance they have.

                It’s easy to blame autism for some behaviors or frustrating issues because the fact is autism causes a lot of them. The blame can’t turn into excuse it won’t do a child any favors later on down the road. Yes, there are many things that you just have to work around because autism leaves you no choice but as the same time showing a child the way is very important as you would with any child. It’s my feeling a child with a side of autism has abilities the world needs and needs it in a bad way. If the focus is too much on the autism and not the unique individual could we blur who our children could become? Maybe.

                There is a lot to be said about old school parenting and I am not talking the wooden spoon ways of the old order or sometimes the present order. I am talking about the do not feed a behavior you want to stop. It is clear Temple's mother did not let autism define who she would become. It is a part of her? Yes of course and thank God the autisitic community has her but she clearly sees autism as something did not prevent her from becoming completely awesome. It helped her individuality and focus because her mother guided her that way.

                My son used to and still does sometimes have a very hard time coming from the car to the house. It is a challenge each and every time. The outdoors catches his mind and boy does it hang on. So the transition is a hard one. When we first began with the Autism planner in our area they gave us a spec ed clock with a red zone. When the red is gone it’s time to move on and I am sure an effective approach for a lot of kids but for my son I didn’t see this as affective tactic. Even with the transition meltdown I knew he was still a boy and a boy wants to play in the dirt. I don’t use that silly clock, never have. I do give him time to check things out then I tell him it’s time to go in. Sometimes we go straight to the bath and he forgets what he just left behind. Other times he just has to protest and I walk away. I can say his protest over time, and I mean months, has gotten weaker and short lived. We deal with this transition every single day.  It has become routine for him to know I am not going to respond and he is still just a boy who happens to have autism. His focus on the tantrum is nearly unbreakable but he is slowly learning what the routine is and it has taken extreme patience.

                Another good example, he likes to eat dirt. He likes the feeling in his mouth for one reason or another and I assume the sensory difference has a lot to do with it. At same time If knows I am watching he won’t do it. Like I said before he is autistic he is still a boy. Every person who has autism is a person first with some autism to keep us guessing. I don’t know the answers but for my son I do believe I have to raise him to focus on who he is before he gets to focused on the autism and blurs his capabilities. That being said it doesn't mean we don't adjust because we do alot of that but his job is to be a little boy first and hopefully one day use that side of autism to do great things.

Wake Up Your Kindess...It's a Powerful force!

                 Today I am sharing a lesson about human kindness and how easily we can distribute it if we want to. My older kids who are not autistic experienced a loss on their dad’s side of the family a couple years ago. A Great Uncle who passed away from cancer.  A Very difficult thing to understand, especially at such a young age. They didn’t know him well but I think when you are so young that can make it even harder to grasp. The family is very close and he was an excellent member of the community in general. If you knew this man you knew the world would never be same without him in it. Although his legacy of kindness would never go away and through his rough exterior helping people came very naturally to him.

                The family had some brightly colored shirts made that said Cancer Sucks on the front. Short and sweet sending a simple statement about how it felt to lose a loved one. My son came home with one of these shirts and wore it to school. A teacher informed him it was offensive and asked him to either take it off or turn it inside out. My son refused and I am sure the teacher considered him to be a defiant punk for not doing as he was told that day. I can say pretty honestly that could be a genetic trait on both sides that also requires an understanding. I patiently waited for the school to call and have me come in to discuss the issue all the while wishing I had an extra Cancer Sucks t-shirt to wear to the meeting. I don’t condone my children being defiant but in this case, I saw it as something that meant the world to him and that mattered to me because I know all too well it’s ok to question authority from time to time. The school never called of course, it wasn’t as offensive as some things I could point out in a building full of teenagers.

                I did tell my son he should do something more active when it comes to Cancer awareness and learn more about how it affects people’s lives. I offered to take him over to the children’s hospital and meet some families affected which I think was a bit of a scary thought to him at the time. At the same time the Relay for Life fundraiser started at the school. My son loves his money! So much so he doesn’t like to put it in the bank because it’s out of site. But one day I noticed his change jar he had been saving for months was empty. I asked him about it and he had decided to donate it all to the cause. You can imagine the smile I had on my face because not only did he stand up for what he believed he did something to make an impact. He may not have known exactly how much money was in there as it was a fair amount for a young kid, but he didn’t care. Soon that defiant kid who refused to turn his shirt inside out was getting smiles and Atta boys from the authority figures at school.

                Moral of the story, it is just that easy to do something. Even if what matters to you means you have to stand up to people who truly don’t understand how you feel. My son took a risk that day by refusing to listen. He could have gotten in trouble at school and at home because he didn’t know how I would feel about his stance. Typically if he gets in trouble at school he is in trouble at home.

                There are so many lessons that can be learned from the kindness of children we just forget as we get older and get wrapped up in the world. Everyone is born kind but time seems to put it to sleep. Wake up your kindness and give it some exercise!  Stand up for what matters to you and it doesn’t directly have to affect you. The money donated by my son in no way was a benefit to him. He gave it up and never saw it again and has no idea who or how it helped anyone. It doesn’t matter either because he just wanted to do something, and he did. Make a difference and it doesn’t have to be money to do it. Kindness alone is more powerful then we give it credit for.

6-Year-Old Autistic Kid Rocks "Piano Man"

To awesome not to share! Remember this little man is only 6 and his enthusiasm is fantastic! Interesting fine motor skills for autism is said to be a struggle....I see no fine motor skills struggle here. Little inspiration to lift up a Monday morning thanks to this amazing little guy!

If Only We Could Diagnose Ignorance!

                 I pay attention to all of the info that pops up on facebook regarding autism. All of the networks post information and stories all day long, including me. Some of it I look at and don’t take it too seriously if I don’t agree and some of it actually makes me a bit ill to know so many people are reading it and taking it to heart.

                Yesterday I came across a post from a facebook page called Reversing Autism and really I am not too fond of the title alone. For the first time I was actually completely offended by a post and had a very hard time holding back a response. The post was a shabby chart with statistics on the rise of autism. I believe it was the state of Texas and showed the rise from the year 2000 to now. Yes the chart showed a huge difference and how quickly the numbers had gone up but the chart was not what offended me. It was this statement above the chart that made me want to respond with a few choice and not so classy words. “This is such an epidemic and the news don’t even mention it!! With these numbers the WHOLE COUNTRY SHOULD BE PANICKING!!!”

                I actually had to read that a couple times to make sure I was reading it correctly. Does this person realize the message they are sending all across facebook to people regarding autism? Do they realize there are autistic adults and teens that see that and wonder why the way they are is a reason for our country to panic?

                This is how that statement translated to me as a mother of a child who has autism gifts.  A woman comes into my home and says she is not going to have kids because she is scared it would end up like mine.  Then I toss her out the front door like rag doll for taking a personal shot at my child.

                Here is what the whole country should be panicking about. Poverty, the disgusting state our economy is in. The fact that we spend more money on prisons then education and it shows. Finding an education plan for a autistic child is extremely hard but I can't say the average American child is getting a decent education either.  A generation of kids being raised not knowing how to communicate because being plugged in is easier. The fact people are more inclined to video tape someone being harmed then to step in and stop madness. Child abuse because children are being treated like unwanted dogs in some homes. Half of our country being on some form of welfare and kids are being raised to believe this is the way to live, because it's easier then doing something with their life.  I could really go on and on about what we should panic about but autism is certainly not one of those things. In fact and maybe I have childish views but I tend to think someone with a form of autism could turn it all around for our country. Sometimes it seems like autism is the only form of logic walking this planet.

               Shame on anyone who creates fear and panic in regard to autism and one more thing comes to mind our country should be panicking about.....ignorance because that is clearly rising faster than any other neurological difference known to man. There is no chart to show us how quickly it has taken hold but if there was a way to have it diagnosed I am more then posative it would blow any other statistic right out of the water.

I

Show No Fear!

                 The system of autism is a tricky thing. Phillip and I follow a system every day and it can come down to the smallest things. When he gets in his car seat I have to take a book out of the pocket in the driver’s seat and place it on his lap. I also have to do this before I buckle him in; if I buckle him first it throws off the system.  Things like this go on all day and the rituals make things easier for him to process. He knows what is coming next and that is important to him.  Not an easy thing for me to adjust to with a mind and better part of my life fighting every system I came across. Repetition was something I could never grasp, until now.

                Many kids choose at young age to have a security object. A blanket, toy, book, or whatever it may be that they keep with them all the time. In this case Phillip finds security in environment and the daily routines of life.  Basically everything around him is his security object and when it changes he is not so at ease or accepting of the change. Maybe at first he will do fine but eventually it takes a tole on him. He may not show it verbally but he might stop eating or not sleep well.  Little clues that he is losing his security. People have told me to carry a familiar item with me to distract him but it is really not so simple. I can carry 1,000 familiar items with me and there are still 1,000 new items around him that I may not be able to distract him from. The new things he sees are typically more powerful than the old stuff he has already fully inspected.

                With a big move for our family coming into play it’s not going to be easy but it’s either stay here and have limited help for his future or move and ensure we have done everything we need to do.  I enjoy change and can adjust easily but the one thing that throws me off is, knowing one of my children may not be at ease. I guess you could say when my kids are anxiety free I am anxiety free, like every parent feels or should feel. 

                The rituals are about to come to a halt and the routine is going to come crashing down to be rebuilt again. Not just for autism but for all of us because when you live with autism those things become just as much part of your life as it does for your child. The thought of this is a little scary and I am going to have to suck it up and be confident in every choice I make, or at least appear to be, because I am his environment. I am just as important to him as that book in his lap and the more I can ease some insecurity for all of them, the better. Even if I may feel like I am drowning in my own insecurities I won’t or can’t show it, in fact I refuse to.  The change is difficult but the choice was not and I am very confident in that in regard to my whole family.

                That is what a parent is supposed to do! When the world seems a bit off or overwhelming a child should be able to walk into a room with mom or dad in it and feel at ease. My parents are visiting and I am no longer a child, but to them I always will be and they still provide that security just by being around for me. We should all be so lucky and be wise enough to pass it on to our own kids. Even if you are a bit afraid as a parent....your children don't need to know;)

Writing This From a Padded Room....

                 It finally hit me the other day, the crash of autism information overload. Nearly to the point I was going to go into my own meltdown and nothing would have helped. I am all for building an understanding and acceptance in fact it’s all I want for autism, along with an education plan that gives them all a fair chance in a school system.

                Advocacy, research, healing, therapies, vaccine propaganda, and If I saw one more baseball hat with a puzzle piece pop up on my computer for ten dollars I was going to throw my own hat in and wash my hands of it all. Well, not autism because that is here for good and I am perfectly comfortable with that. I finally started to realize why people can’t or don’t care to understand autism and it actually made me a bit angry. Not only is it a complicated difference but all the media and networks connected are really just one big mess. Don’t get me wrong they do great things and those things are needed but who is deciding what those things are? Is it people who have lived years with autism because I am confused as to why all these things are going on yet no one can find great resources for their children. Yes, some people are lucky enough to find excellent systems but there are so many who are just left standing in one place.

                Then I see the new line of school supplies Autism Speaks has created to sell through Wal-Mart. Autism Speaks is putting a ton of money into research and they are a huge system working for autism. I had to wonder what profit Wal-Mart gets from that deal. It’s a major corporation and they don’t do anything out of the kindness of their hearts, so there has to be a substantial profit or large market for what they sell. When did autism become a commodity and who decides school supplies is going to help families? I know there is more to it then what we see but how ironic the worst place to take my autistic child is the one chosen to distribute such a silly product. Even if I needed school supplies and at this point I am not sure, wait I am positive, the school system where I live is not set up for educating an autistic child the healthiest way possible. The irony all around is just too much for a parent and I know I am not the only one who feels this way.

Today I spent in recovery from the wave of autism chaos most of America is wrapped up in. One of the things that helped me get back on track was a young man at the grocery store yesterday. He was the box boy and was playing a bit with Phillip. I could see he was excellent with kids just by the way he interacted with him even if Phillip didn’t react like most kids would. He carried my groceries out the van and we chatted a bit. I explained to him that it is hard for a stranger to get a smile out of Phillip and it was a good thing to see. He asked me why he was so shy and I told him he was autistic. This is the part you feel the apologies rushing towards you like you just told them you had a death in your family=0. Rarely is the reaction anything different than apologies and discomfort but at that moment his eyes lit up and he smiled a huge smile towards Phillip. That’s when he said “my brother is also autistic.” He said this with great appreciation for autism and for that I wanted to hug that kid right there in the grocery store parking lot. Glad I didn’t or I might be writing this from a padded room. Hugging the box boy is not a socially acceptable thing to do…but his reaction wasn’t what I would call the social norm either.

So there it is. Buy pencils, hats, a necklace or magnetic bumper sticker for your Minnie van. The only real thing that is going to create understanding and awareness is having your life touched in some way by autism.

We are only as impaired as we see ourselves!

  There are some words I don’t like when it comes to how general information describes autism. Impaired is one because I don’t feel or see that my child is impaired. He is extremely in tune with the world, so much so that he is unable to ignore it. His senses are so powerful that he sees and hears everything around him. As he has gotten older it has been easier for me to understand just how in tune he is and I even use it from time to time. Yesterday we were outside playing and while he was holding leaves up in the air so the light could show him the veins of the leaves I was sitting there trying once again to find a way to get him in the house without protest. Sometimes I use the bath time to manipulate him indoors but I like to find other tactics if it’s possible. I went in the house and put his favorite movie in at a normal volume and went back outside leaving the door wide open. He didn’t have to come right next to the door to hear it, but when he did he ran in to watch it. Amen, I was able to shut the door behind him and find a peaceful transition. That is not what I would call impairment at all because I couldn’t hear it and I was next to the door.

Another word or words I don’t like are birth defect.  I don’t see being born with a mind that doesn’t operate exactly like the general population as a defect at all. The definition of a defect is the general word for any kind of shortcoming or imperfection. If that’s the case we are all walking around with an undocumented case of birth defects. It is odd to me that because autism isn’t understood anyone would call it a defect. That is the society we live in isn’t it? If people don’t understand or are unwilling to understand on a personal level the person who carries the mystery must be the defective one.

            Disorder is another one that I could argue to the end of time. I can say because of the way my son processes information and operates through the day there is nothing disorderly about him. He is the definition of order sometimes because order eases him and if things don’t make sense he will focus as long as it takes to make sense of it, at least the little things. If we take him to a busy and crowded place he will focus on one thing at a time but eventually his desire to find order in everything around him becomes too much to organize in his mind. Yes, that inability to adjust to chaos is a disorder but we all have it to a point, it just doesn’t hit us until we leave and feel exhausted from it.

           Having ADD has given me the pleasure of living in constant disorder but my son’s autism has actually helped me overcome some of that because it forces me to create order. I personally love that his so called disorder has helped to balance my so called disorder. Somewhere in there we find order in each other!

           Whatever label this perfect and orderly society puts on us I can find humor in because if we believe every word we read we all have birth defects, we all have a disorder, and we are only as impaired as we see ourselves.