Tuesday, July 31, 2012

Take It To The CDC Or Stick It Where The Sun Don't Shine...


The other day I came across a blog contest and wanted to see what kind of blog was in the running for first place. The number one blog voted for by readers was about autism and I was really happy to see this, until I read the content of the blog. Then my blood boiled a bit.

            I see it all the time something on the internet. Someone claims to know the answer to autism, it can be reversed. Autism is not a life sentence, or healing autism.

When I see these sources of information I have to wonder why these people don't go directly to the CDC and prove their reversal methods to be mass distributed to whoever wants it. Instead of selling the information for whatever price they think its worth. Or putting it in the media for parents to think they are just missing the answer.

            That kind of garbage makes parents who are already killing themselves to keep up think they aren't doing enough already. They are already wrestling with the mysteries their children give them every day, which is the easy part. It's wrestling with society to accept the difference and be kind that really runs them ragged. Not to mention the endless and never 100% correct autism information that is pushed all over the place.

Here is exactly how I feel about my son’s autism and what these people can do with their false hopes. For one and I really don't think I am the only person who feels this way, I completely accept my sons difference and the number of autism cases are rising so fast it really won't be much of a difference in the near future. Keep in mind my son is not severe so maybe my opinion is easier for me to grasp then it would be for another parent. My son has abilities that blow my mind and impress me to the fullest. His attention to detail is something everyone could learn from and it has made me a much more aware person in regard to what I have been ignoring on a daily basis. He sees much more than the average person does and he imprints it into his mind. He can't verbally explain what this is like but from what I see, it is way above anything I could even understand. I love everything about him, yes I even love his autism;)

A small example of the details he picks up on that others might ignore and I am only going to give one but the examples really never end. We were outside washing the van the other day and I was spraying Windex on the windows. Phillip was 20ft away at the end of the driveway, with his back to me, playing in a mud puddle. I noticed every time I sprayed the Windex I could hear an echo. Each time I sprayed it Phillip was repeating what the sound of the bottle makes when you pull the trigger. There he was playing, with tons of distractions around him and he picked up on one little sound he liked with his back to the source. If I jumped to “heal” him I wouldn’t know him anymore and from what I know he has a lot to offer just the way he is.

So for myself when I see a headline to fix autism my thought is either take your cure to the CDC, for those who want it, or stick where the sun don't shine, for lack of a more classy term. We will learn to use it as any child with gifts, and they all have them, should do. I want education progams developed and an understanding when we are in public. I want people to ask me questions instead of staring at me like I need to parent differently. I want to be able to say the word autism and not imedietly get a look of sadness from people because we aren't sad. I want people to know it's a challenge for us and I would never refer to it as a curse, so I prefer if they don't either.

What I do not want is to change my son in any way.



Sunday, July 29, 2012

I Did It! I Am Normal! Or At Least How I Define it...


                The beginning process of autism is a very hard place to be. We all have those defining moments in life that stand out in our minds that we can literally remember every detail of. One of those moments for me was sitting in that room with four lovely specialists getting ready to hear what conclusion they came up with. Nothing on the walls, sitting in a little tiny chair with my ears ready to take it all in. Two things happened that day that will be with me forever, the word autism coming at me like a freight train and the looks on their faces when they said it to us. Also the squeeze in my chest from trying not to burst into tears, which I managed to keep in until we left the building.

                I see every day a new post in support groups of a parent who just went through this defining moment. With autism on the rise, these posts are common to see.

                A woman wrote yesterday about some of her new adventures and said her child was in group of kids all counting. Toddler age and many of them were counting to 20, but when it came to her child she managed to get to 3 and she could feel the looks on her and she fought back the tears. My thought was...she did it! She tried and even 3 is a huge success. I totally understand those tears and yes, when our children aren't up to the social standard we get the looks. Piercing looks.

               I used to look at the progress of kids my sons age and I would get sad, wishing he was at the same level so to speak.  I changed my thought process and now when I see kids his age, who are doing what society expects of them, I smile. I smile for the parents and the child because they aren't facing the challenges we do and I am happy for them.  They don't get those looks even if they are throwing them at me, I feel they have been blessed one way and we have been blessed another. I actually find myself celebrating that for them in my mind, because maybe they wouldn't be strong enough to face the challenges we do or maybe I am celebrating the fact they don't have to.

             Normal is a dirty word in my mind, and really it always had been. Autism has confirmed it for me. I have spent most of my life trying to be "normal" and that is one challenge I have never mastered. Why is that? Because we all define our very own normal. Trying to live up to every one's opinion of normal is impossible for anyone. For those who have success at it, I see a very difficult emotional breakdown in their future. We can't live every day to fit in or please others or in our case that would actually be impossible and I see that as a good thing most of the time.

            We all define ourselves and what our comfort level is; our children are doing the same thing with our comfort to guide them. Autism or not, you will never see an adult or children throw their hands up and yell...”I did it! I am normal!" although it's tempting to do this just once in a public place and watch the reactions. I don't see the people in the room gathering to congratulate me, but moving further away from the crazy person who thinks she just reached a place none of us get to.

Normal is a dirty word...create your own definition of it and use the word as little as possible.


Saturday, July 28, 2012

Long Term Effects Of Toxins Shouldn't Be Ignored...

http://www.purezing.com/living/living_guidetotoxins.html
Full of information you need to know...

What are you eating every day? You might think you know but we are consuming a huge amount of toxins every day and have for years.
I have never watched what I eat, blessed with a high metabolism and have basically treated my body like a garbage disposal, or chemical dumping ground, for years. I really never thought I had to pay much attention to what I was eating since weight was never a problem. Until I learned being thin had nothing to do with being healthy. Yes, I should have known this but as a society we tend to just assume thin is healthy and carry on.
I began researching food when autism came along. There is so much information about diet and allergies linked to autism I was of course worried I was feeding my son something everyday that was acting as an opiate on his brain, or flat out causing toxic effects on his little body.
What have I learned? The average consumer probably has no idea what they are really eating. Most of our "healthy" foods are treated with so many chemicals we are barely getting what our bodies need from it once it hits the market.
We read about all those chemicals in our food and once we hit the part that says it may cause some life altering illness in large quantities we stop worrying. In the average persons mind, that translates into, if I sit down and eat it over and over in one day maybe it will effect me, but as consumers we need to consider the long term effects of what he eat and drink.
My eating habits have completely changed and I feed my son only what I would feel good about eating. He is gluten free now and I am doing it with him, I also give him a daily probiotic and the these two changes have shown positive effects. Is he still autistic of course he is, but you could say some of the autistic side effects of eased.
My basic rule of eating now is, if I read the ingredients and I don't know what it is....I don't eat it. You would be surprised how many things you remove from your daily eating habits if you consume this way, and how much better you will feel.
The biggest obstacle with changing my eating habits has been flavor and convenience. Some of the foods were bland to me, and it's not nearly as convenient as the unhealthy options. That's when I hauled out the blender I really never had a use for. I used to skip breakfast all together but this morning it was a acai berry pulp, blueberry, banana, probiotic juice, spinach smoothie and I like the taste along with the effects. In fact I actually feel run down and tired if I skip this smoothie in the morning.
With the health crisis and mental health crisis happening in our country and no one trying to fix it, we need to be active in fixing it in our own lives. It's my opinion we protect the health of our genetics and our future generations if we take action now. My only wish is that I would have taken this action years ago in my life. Could it have prevented autism? I don't know and maybe not, but my advice would be to assume yes because there is no risk is to thinking that way. On the other hand if we assume what we consume is totally safe....the risks are endless.

Friday, July 27, 2012

History Tells Us A Cure For Autism, Might Create A Very Boring Future.

Some of the greatest contributions to history were people who had autism. I suppose some of there ideas were seen as crazy or they were misunderstood along the way. After all is said and done, their contributions are impossible to ignore. Imagine what the world would be like if we took away these historical people. Very boring comes to mind. Accept and adjust as these people did in there own lives opening the door to changing the world.

Thursday, July 26, 2012

I Ignored The Clues From The Start.....

http://www.autismunited.org/blog/autism-diagnosis-80988.html

This is a link to a short article about detecting autism as early as 6 months old. This is very interesting to me because even though I was in total denial my son had autism from the very begining. Once I accepted it, I can think back to clues.
Clues from very early on in his life. Little things that at the time I just thought he was a bit quirky. Now that I understand his autism some of those things were based on sensory issues.
Phillip would never allow anyone to hold him, even as a very tiny baby only his dad and I could hold him without him getting fussy. Loud noises were always a problem. I was at baseball game and parked at the far side of the field. Opened up the back of the car so he could crawl around and the sounds of people cheering wouldn't scare him. A woman came over to chat with us and let out a yell when the ball was hit. Phillip was instantly startled by it and she apologized to us. At the time I felt he was just sensitive but didn't know why.
He never slept in his crib, for one reason or another, I assume the bars were overwhelming for him. He never took a bottle. I tried and tried to give him every kind of nipple I could find and he refused them all. Why? because I was breast feeding him and he couldn't accept the change. I thought he was just stubborn. This made it impossible to leave him anywhere because even if I pumped milk, he wouldn't take it.
Constipation was always a problem. One day I put him in his crib and he was able to have a bowel movement. After that one time, every time I put him in the crib he had a bowel movement. He found something that worked and turned it into his own system. We thought it was because he hated his crib and could get out of it if he went to the bathroom, but that just wasn't the case. It became such a system I was worried about giving up the crib, even though all he used it for was that one purpose. It had become such a system for him I wasn't sure if he would be able to find a new one. I also had no idea at the time this was a part of autism. The repetitive behavior made it easier for him. I can say now with a daily dose of probiotics the constipation was solved completely.
With all the theories thrown at me I can say my son was born autistic, I just didn't know what it was. Would I have done anything differently? No, I think I did and am doing everything I can to make sure his difference is as easy as it can be. When I was in denial I felt it was just his personality and I can say now it is still just his personality. Only now, part of his personality can be explained by learning and accepting autism.

Wednesday, July 25, 2012

Find Security In The People Around You...

Not writing about autism today or maybe I am in a round about way. Today is about who you surround yourself with in life and the security needed to be your best.
 Before my son was diagnosed I felt very alone. Bombarded with people indirectly telling me what I was doing wrong. I guess the one thing the autism intervention services offered at first was the feeling of not being alone. Finally a group of people who understood why we had been living life on repeat and why I was parenting the way I was. Pretty soon they began to direct me on parenting as well, and it was back to alone all over again.
The people you are closest to have to be understanding, non judgmental, patient, and reliable. Not reliable in way they jump in and take over, but reliable in a way that just makes you feel secure having them in your life.
They have to be the kind of people that if my child has a meltdown, they don't look at me as though I can fix it. They have to know I am a good parent and I am doing everything I can every day. They have to understand if my son doesn't react to them or play like other kids would, he will with time. They have to be the kind of people that you know will always be there for you even if you never need them.
I met a woman yesterday who had concerns her toddler was autistic and shared with me some of the things she was going through in her personal life. A young women and from being around her son for a short time, she has good reason to be concerned. It was the things she told me about some of her circumstances that really caught my attention because it was full of untrustworthy people and not a lot for her to rely on.
Children crave security even though they don't know exactly what it is, they feel it and they want that feeling. As we become adults we tend to forget how important security really is, but we never stop craving it. Once we are grown up we don't have our moms and dads everyday to provide it like when we were kids, so we have to find people in the grown up world who provide it. Easier said then done sometimes, but not impossible.
I am very blessed, I have a family that has never wavered in providing me with security. Even when I made choices that were baffling, they have always provided me with a soft landing. There have been times in my life security was completely gone, inflicted upon myself but when I am with my family all of that just goes away. In such a powerful way just the first seconds of seeing there faces makes me feel a surge of safety. I do not see there faces enough and intend to change that.
This is the way everyone you surround yourself should make you feel and it's not always family that gives you this feeling. I feel the same way when I am able to get together with friends I have been blessed with in my life. A small group of unwavering women that make me feel strong, and thank God for them.
You see the less alone you feel the stronger the parent you will be. Even if it's just a small amount of people, they can provide a huge amount of security that one thousand people couldn't measure up to, and your children will benefit from how you feel in every way.

Monday, July 23, 2012

Apologizing For Autism? All The Time....

   Chances are if you are raising an autistic child, you find yourself constantly apologizing to people when your out in public.If my son is unaware of his surroundings because he is focused on something, I apologize to who he might be standing in front of. Out to eat and he runs right up to someone's table interrupting there meal, I apologize to them and redirect him. Just a couple examples but sometimes I feel like I have spent the better part of my day apologizing to random people for not taking a parenting approach a typical child would react to.

    Now that my brain is cram packed full of autism information I notice more and more families who have an autistic child. Chances are you are around many yourself and you might not see it.Last week I went shopping alone. A women was walking in ahead of me with a boy who was maybe seven years old. Mom was letting him set the pace and I could see they had a system. He walked into the store slowly checking out the floor and cautiously grabbed a cart, which he had to handle a certain way. Mom stood back and gave him space to do what he needed to. People were waiting for them since the process was slow and starting to stack up around them. The mom looked at me and apologized so I smiled and told her no reason to, and she apologized to two more people just trying to get through the second door. Both of which were not so considerate of her allowing her child to set the pace.
I knew what she was doing and she was doing it really well, but the lack of understanding in society puts some parents in apology mode.

    There are days I can't even count how many times I have apologized to people and most of the time there really isn't a reason for it. What I am really doing is defending my child for what people don't understand and I don't have time to explain. Apologizing to society one person at a time for lack of understanding, when what I really want is to build a understanding so I don't feel like I have to apologize everywhere I go. Even If the only way to build that understanding is also, one person at a time.

Sunday, July 22, 2012

Autism Awareness Is Action...They Go Hand In Hand.

There is some debate on autism awareness. Some people feel we have enough awareness and need action. I would say a big fat yes to action but we can't stop pushing awareness. Most people have heard of autism one way or another. The question is do they really know and understand what it is?
From my experience the answer to that would be, no.
What needs to be understood is the sensory aspect of autism. The processing is what causes the behaviors that many people in society see as, a bad child or lazy parent. Both labels not even close to what is really going on.
I think many parents feel a bit like I do when it comes to awareness. People might know what autism is, but no matter what anyone thinks they know, every time a child is diagnosed there are new things to learn.
Autism is a widespread word that nearly everyone has heard at some point but for each family it carries an individual meaning. Sometimes we have a hard time even relating to each other and the challenges we face. The one thing that unites us all is the lack of understanding in society that rains down on us and our children. I for one, will never stop trying to make people aware of my sons autism because that is how I create action for his future. The more people are aware that are truly not aware, the more progress is made for all families.

Saturday, July 21, 2012

Move Towards The Effect...Cause Will Hold You Hostage

http://www.autismunlocked.com/

The link above is a website I stumbled on this morning that will launch September 1st. From what I can tell it will be a more affordable option that may help, without running out and buying an Ipad. I am posting it because this is the kind of thing I love to see being developed for the autism community.
Another reason Autism Unlocked caught my eye on facebook when I was browsing this morning is the acceptance feeling I saw in the page. There are so many pages and websites out there that are in constant promotion of fixing autism. Constantly posting medical information that may or may not be correct. We don't know, no matter how many articles we read, how many opinions we hear, no matter who blames what...we still have autism and we still need options that take us on a positive journey and those options need to be obtainable to everyone in need.
Every time I see a new autism parent post in a group they have a child just diagnosed, my heart sinks. It is so easy to fall into the negatives that can be found out there, especially when you are in the desperate stage of finding answers. That horrible place you want to know why and what to do as a parent to make it better.
A parent with a child who has just been told autism is a reality is frantically looking for answers to the point of near insanity.
The best thing to do is accept and adjust. There are no answers to autism, we are not defective parents and we do not have defective children. We simply have kids with different needs.
The more programs that are developed to meet those needs the better! One day people who are facing autism will be able to have access to a variety of programs at low cost or even free. Programs they can access as soon as they get home, maybe even programs that can help create a map to the style of learning each child has. Something that helps parents move directly into a positive direction, without the desperate feeling of being totally lost.
So yes, I am promoting a site that is not yet up and running and I have no idea what kind of results will come from it. If autism is part of your life, add it to your favorites and give it a try when it begins. If you know someone who has autism in there lives share it with them. A parent who is bombarded with cause would love to see something with an effect from time to time.
Support for these programs opens the door to so much more for families in need.
Personally I am done with cause. For my son and my sanity, whats left of it, we are moving in a positive direction towards effect.

Friday, July 20, 2012

Autism Siblings Are A Powerful Force!

Spoke to my 12 year old daughter this morning, who is on summer vacation across the state. Hearing both of my kids voices on the phone lifts me up every time.
How has autism effected the older siblings? In so many ways good and bad. Phillip has always been a little more work then your typical child, right from the start. Dad works out of state now for months at a time. I am able to manage things on my own but the role my older kids play in my sons life is nothing short of living with two superheros!
It hasn't been easy for the older kids from time to time. Mom having to show up at events for a short time or sometimes not at all. There little brother running in high gear and sometimes not being able to process which attracts a lot of negative attention. Not being able to communicate with him like they would like to, a challenge we all face on a daily basis.
Then there at the times we are all trying to keep up, working together and still as a group, we are all flat out worn out.  I have never forced my older kids to care for their brother because I know just what a challenge it is and they need to be free to just be kids. At times they will step up and help just because they see and live the challenges and really, they just love him and enjoy a short time with him every once in a while.
There was one day we were spending the day in a mall. Shopping is something I don't even know how to do for myself anymore. No time to browse and think about what I like. If I need something it's a fast decision and almost no thinking involved. In fact I have nearly mastered this style of shopping.
This day I asked my oldest to keep an eye on his brother so I could just look for a bit. He understood and even though wasn't on board he knew what it meant to me.
As I browsed I saw a flash of a bright yellow shirt fly across the store. I expected to see a taller version of him right behind, but no luck. I knew if he had this kind of speedy head start I also needed to put my running shoes on and catch up. I bolted after him and finally managed to slow him down, at that time big brother came running up with a look of oops on his face. He couldn't believe how quickly Phillip had just disappeared. A common problem and I could not be upset with my oldest son because I knew all to well how fast it can happen. In a blink of an eye he can vanish and the problem is the only way to find him is getting a visual on him. You can say his name 100 times and he won't respond, a very frightening thought when you loose that visual.
I don't ask my older kids to take on more then they need to, the challenges are to much for kids so young to have to figure out. When they are comfortable with it I will allow it, but when my visual on my older kids tells me it's to much, that's when it's time to step back and let them be kids.
When Phillip was diagnosed as autistic who handled it perfectly and with instant understanding? Even a little humor tossed in to the conversation? His big sister and brother did. They were not surprised and they were the two most understanding forces in life I have ever seen.
At one point the words "there is nothing wrong with him, he's just autistic" came out of their mouths.
Siblings of autism face as many difficulties if not more then parents do and with all that they are an extreme force of love and understanding. My older kids are helping to guide him and giving him an unconditional love that will help carry him through life, even when the challenges hit, they have an understanding I wish I could mass distribute to the rest of the world.

Thursday, July 19, 2012

Be A Perfect Parent, Raise A Perfect Child..Money Back Guarantee!

This morning our autism planner is visiting. Last visit he handed us some paperwork outlining discipline to fill out and return to them. I was a little confused when I looked at it, not because it was confusing to read, but because if the answers where as simple as a piece of paper, that would just be something!
My son has meltdowns like all autistic kids, but it's not based on lack of discipline. It's based on the processing limits he has. I don't see a way to fix that, only to understand it and slow down. I have actually found time is a huge factor. The more time he is allowed to process the better the results. Does that mean when I can't allow him time, I need to find a discipline tactic to punish him for not keeping up with the changes? No.
I have three kids, Phillip being my youngest. When my first child was born I bought every book I could get my hands on to make sure I was doing it right. Honestly I had no idea what I was doing other then the natural instincts that kicked in when I had him. The books gave me security when I wasn't sure. Then, my second child was born while my first was just a toddler. I slowly stopped having time to even look to the books for answers. I had two small children to raise and sitting down to read instructions on how to do it just right was not even an option at that point. I had basically read everything I could get my hands on anyway and still found myself trying to figure it out.
Ten years went by before Phillip was born. Ten years of parenting, ten years of doing the right and wrong thing. Ten years of discipline tactics and finding what works and what doesn't.
I am not a perfect parent at all. Many days I have no idea what to do so I wing it and hope it has positive results. Many days I call my parents hoping they have an answer to my set back and thank God they never actually tell me what to do because they know I am capable of figuring it out.
I know you can't use the exact same tactics on each child, they are different which means different tactics each time.
That brings me to my third child and boy has God given us a twist we didn't see coming this time. Basic discipline is not really an option because his mind operates in a totally different way. I can discipline him for common toddler issues, but certainly can't punish him for being autistic. I can't force him to be something he is not, and that would apply to all three of my kids. I have to be able to see things the way he does and build an understanding, a desperate need in the world of autism.
I don't care how many papers are thrown at us with outlines on what to do, or guidelines on how to "cope". Our children teach us as we go.
Unless there is a book out there called, How To Be A  Perfect Parent And Raise A Perfect Child, with a 100% money back guarantee..then maybe I would sit down and pay attention. Until then I will read my child because he has the power to teach me everything I need to know.
When it comes to parenting, aren't we all just really winging it anyway?

Wednesday, July 18, 2012

The Ipad, Changing Lives..Hundreds Of Dollars At A Time.

This a small clip from the last episode of 60 Minutes. This mother nearly broke me when she described what it had been like for her to try and communicate with her child day in and day out. I had to leave the room because I actually did burst into tears.
Our son is just a toddler and I believe he will talk, he makes big efforts to and can say a few words so eventually it will come.
 There are families effected by autism that can never speak to their child. They are raising their child basically by mind reading and looking for clues, a nearly impossible task. Sometimes they are able to figure it out and sometimes they aren't able to.
Autism has been described to me as being trapped and I have seen this in research and through my own child. Which means someone effected by autism who is nonverbal, may be thinking their needs and have thoughts just like you and me, with no way to get it out. The body and mind are not working together to form verbal communication.
If you spent an entire day without speaking and trying to communicate your needs in whatever way you could just imagine how frustrated you would be. One day being nonverbal would be exhausting for you and the people around you. Now imagine taking that one exhausting day and turn it into years.
The Ipad is opening doors for some autistic families in regard to learning and speaking through technology. For many people that is a gift from God, to finally be able to get to know their child's thoughts, sense of humor, and needs. Even better to meet those needs without having to play charades until they figure it out, if they figure it out.
The problem? Many people can not afford an Ipad. The cost of raising an autistic child alone is overwhelming and now there is a feeling the Ipad is necessary on every level. So, what we need is affordable programs that mimic what the Ipad offers. Not mass distributed at 600$ a piece or more, but at an affordable price that is not based on billion dollar sales. Instead based on changing lives without putting more families deeper into debt.
Maybe one day this will be available to everyone, but it may take someone with autism to create it and make it easily available. Autistic people tend to live in a logical world, and what seems logical to me is changing lives. Making communication programs available to anyone who will benefit from it because dangling a program in front of families who can't speak to there children for hundreds of dollars and waiting for sales to hit an all time high, is cruel and doesn't make any sense to me.
1 in 88 children are living in a world of logic, and logic is putting human need ahead of profit. Personally, I think that would be a pretty amazing world to live it.

Tuesday, July 17, 2012

Rockin The Autistic Sensory Boat....

We hear the word meltdown all the time when it comes to autism. For myself, this word has a hold on me because I am always trying to out run it knowing it's going to show up at any given moment. More often then not it sneaks in to our day out in public where everyone can see and immediately the assumption is, my child is out of control or I am a lazy parent for not putting a stop to that madness.
That's why today I am going to explain the meltdown. An important thing to describe so people might see what is really going on in a different light.
The meltdown is a tricky thing for the whole family. We don't always know the trigger, we can't always see it coming, and once it comes into play, we can't always stop it. I have found as my son gets bigger it's much harder to out run. I used to pack along all kinds of distractions and things to keep him focused on one thing at a time but with time he really has outgrown that trick. It no longer works when the meltdown hits. The older he gets it seems the more his mind is taking in, which means more to process. I can see how much he takes in just by watching him and I can't imagine what it is like for him when it becomes to much or he just can't shift his thoughts from one place to another, but I can guess what it's like from seeing it happen time and time again.
For one, people need to understand a parent can't reason with thier child when this happens. To a point before it happens, and if we see it building, we can try but ultimately when it takes hold, and a it's a firm hold, we become helpless.
The best way to describe it for our son is he is literally hit by a tidal wave that crashes into his mind. He has no control and niether do we. If we are at home and the tidal wave hits he will eventually go into his room and shut the door. If we open the door to soon he takes longer to come back to us and he will shut it again. That alone tells me he is desperatly trying to get himself back from this place and he does not want us to be a part of it. At times that wave hits him so hard he is so far underwater It really feels like he has just vanished for a bit.
As a parent I want to get him back from this place that is drowning him, but I can't. He might be trying to hit me, but I can look in his eyes and see he isn't there. The hitting looks like a violent child who is treating his parent horribly but I see him desperately begging for help.
An example of the meltdown process would be the last time we tried a therapy appointment. When we entered the building there was big physical therapy machines, people in wheelchairs, 4 receptionists, and it was all new. At that point, the waters started to white cap. Then we met the therapist and had to follow her through the building down a hallway into a new room, with balloons and new noisy toys. This is the point the boat starts to rock. Then, it's time for the therapist to ask mom to step out and she shuts the door leaving only her, a stranger, and his security just left the room. He was at that point looking for his life vest.
The bubbles come out, the therapist begins to test his frustration tolerance. They call it getting to know him, but the tidal wave is gaining momentum.
He is now in a room with a stranger who is tesing his tolerance level and he can't communicate he is not ok with this.....the tidal wave just hit. He spent the better part of that day trying to get back on dry land. This was a predictable meltdown, but there are many we don't always see coming. I do know there is a process to it and sometimes it's a slow process, other times it's a fast one.
Either way the best way to keep from rocking the scensory boat is to figure out for each case of autism what causes the white caps to form and if it's possible, get them to calmer waters.

Monday, July 16, 2012

Miracles And Mysteries...

Interesting thing I found about autism, most families effected are stuck in a land of mystery and waiting to see what will happen for the day.
Yesterday was what I would call a day of mystery and miracles. Typical day and we didn't do anything different. Our son took a nap mid afternoon, which is always a blessing because it leads to an easier night. We decided to go out to dinner at a place he has been to before, a casual place to eat and it has booths so we can keep him contained. Not usually very busy so if he was to get a little rambunctious, it wouldn't be a disaster.
The first step was to get him in the van without a battle. Put him in his seat and he was totally relaxed, no combat at all. First miracle of the day! On to the restaurant and as his parents, we know this is a risky adventure but we have to carry on as a "normal" family. At the restaurant he ran a bit, didn't eat much at all, but he was happy and basically easy to manage. Second miracle of the day!
After we ate we decided to go across the street to the park and burn some energy. I noticed a new water fountain for kids to run in was built and my first thought was, this is not going to work, Then I noticed they also built a chain link fence around it. Anyone who has an autistic child who loves water, would look at that fence as a gift from God. Society gave us a barrier which would be the third miracle of the day.
Phillip never cares much to play on big toys at the park, he runs right past them and keeps on running, almost like he doesn't even notice them, but yesterday he actually stepped onto both of them. Even managed to get him down a slide without complete fear taking hold of him. It was in fact his first encounter with a slide by himself at nearly three years old. Fourth miracle of the day and counting!
When we decided to leave he got into his car seat again without combat. At home we hung out outside for a bit. I hosed off the driveway and Phillip made use of a mud puddle to splash in. At one point I looked over and he was trying to dunk his head in it. Legs covered in mud so I redirected the hose and sprayed him off, which he loved.
Time for a bath and the impossible task of getting him in the house from the outdoors. I went in and got the bath ready, when all of a sudden daddy opened the back door and little Phillip walked right in and stood next me in the bathroom. We can count on one hand how many times he has actually entered the house on his own without hostility, or total meltdown.
Another difficult transition is if I put him in the bath while the water is running, then turn it off...he always has a little something to say about that. This time, he didn't even react to the water being turned off.
So, why was the day so easy and without any transition challenges? I have no idea..it is a total mystery and If I knew everyday would for sure be just this easy. With the autism influence, we expect difficulties, we know the challenges before they hit, and with that comes some anxiety as a parent. I also have to wonder what caused the autism to loosen it's grip yesterday. The miracles went on all day long and It seemed like he was given a small break from what the specialist say will not loosen it's grip without hours of therapy.
A day like yesterday, and today will more then likely not be the same, is a total mystery. That is what families face all the time. The challenges, the difficulties, the expectations, the miracles, and the mysteries.

Sunday, July 15, 2012

The Chase Is On...And So Are The Public Comments.

   Yesterday I went to our local grocery store, it's small and easy to chase the little man if that's the kind of day it is.  Took him with me so he could get out of the house. It's pretty rare we go out in public that we don't get some kind of comment about his behavior, even if it's a polite one.
I think every parent with an autistic child would agree, it's nearly unavoidable unless you keep your child home every single day.

   It was a runner day, the kind of day nothing was going to slow Phillip down. Once his shoes hit the ground he was like a wind up toy and off he went! It can be difficult to get him to hold my hand so I tend to at least put a hand on him so I can feel the take off before he gets away from me. That usually works until we get inside the store. He is way to big to put in a cart and the battle that comes with that is brutal so it's really just not an option anymore. On a day like this....the chase is on.
I didn't buy much and spent most of time redirecting him, at times leaving my cart to run after him and physically turn him around directing back to where I needed him to be.

   I have encountered comments and who hasn't as a parent with a child who operates differently. A few have upset me a little, but most of the time it's just a comment from someone who is totally unaware of his difference. I know at some point we will face someone who isn't just unaware but out to correct my bad parenting. It's coming and I know it. The question is how will I react? I know I won't say exactly what comes to mind, because my mother taught me better than that, but I do have the ability to use whit and sarcasm in a productive way. I have always told my older kids, when someone says something to you that hurts your dignity, you use whit to leave them silenced. Walking away is best, but sometimes that is not an option.

   I was once told I needed to be less sarcastic, that it comes off as hostile and I was using it as a self defense tool. I say...amen to that and thank God for the ability from time to time.
So, yesterday while my discovering, super speedy, sensory gifted little man was flying through the store like a bolt of lightening, a man said to me..."you need to put that boy in a cage!"
I really think he felt he was a very funny guy and didn't realize how bad it sounded when he said it. My response to that funny guy?..."yes! and I should probably beat him to."His face just went flat and he was silenced. I would NEVER beat my child, and I could never beat my child. Not that it hasn't been recommended to me by people on the outside looking in.

    I could have ignored him completely, but If we are going to face this kind of thing for years to come whit is going to have to come in to play. Call it hostile or a self defense tool....I call it a gift and I will have days I just don't feel like ignoring the comments, and that's okay. I am not going to announce he is autistic to every person who feels the need to say something, because first and foremost he is Phillip, he is our son, and he is amazing.

Saturday, July 14, 2012

You Are The Expert And The Superhero!

Watched a video on the news this morning, of a disabled women being beaten in a group home, in Connecticut.
I was going to post the video on my blog and I changed my mind. It was so disgusting to me I refuse to post it.
Things like this happen all the time, in fact the support center told us getting our son to communicate was vital because it makes him an easy target if he can't. We live in a world of technology that allows us to catch these people in the act, but the one time we see it for ourselves is just one time. Every time I see a video like that my stomach literally turns when I think of all the things technology didn't record for us to witness.
Abusers are everywhere and when they are caught, they are charged and hopefully held accountable. The scary thing is, if someone has that kind of nature to them, being caught and held accountable is a temporary fix. The victim is never the same and the public is never completely safe from the next time. Even then, it's only the abusers who have actually been caught and there are many who are not.
So what do we do as parents because no child, disabled or not, is safe from the horrific nature of someone who hurts others for self gratification. In the group home case it wasn't even a child, but it is someones child no matter what her age is.
We don't want to scare our children into thinking every person in the world has the potential to hurt them. It takes away the trusting innocent nature that is so awesome about our kids. They are born that way and we want them to hold onto that as long as they can.
A parents intuition is a powerful thing. The man whose autistic son was being verbally abused at school knew something was not right. He knew his child and he had unanswered questions, so he acted on his instinct. Of course the teachers faced no punishment, but he was able to help his son by trusting his intuition. I am not suggesting we all wire up our kids, but something in his gut told him in that case he needed to.
If we want safety measures in place for our children, we have a right to request it. Maybe you will be seen as paranoid, over protective, and more then likely tagged as a difficult parent. As a mother or father you know your child or children better then anyone does.
You parental intuition didn't come with years of schooling or some certificate hanging on the wall. Hopefully it came to you the moment you held your child in your arms. A natural ability to protect and provide security almost like gaining a hidden superhero power we use when we see fit.
It's OK to be the paranoid, over protective, difficult parent because you are the expert and the superhero all wrapped up into one. On the days you just don't feel like a superhero and we all have them...see yourself through your child's eyes.
Get up, put your invisible superhero cape on and find your stride.

Friday, July 13, 2012

Rule It In Or Rule It Out...

I scheduled an appt for my son today for allergy tests. I have read more info in the last two weeks then I have in the last few years. I have also paid close attention to what other autistic children are going through physically.
Here is the thing, When Phillip was diagnosed with autism, like a lot of kids, it was early intervention time. Never did I hear from anyone, lets rule out health concerns first, then decide what to do. No, I am not saying you can address autism with a simple blood test, but I am learning some physical symptoms are not always associated with autism alone. In fact it may just be some autistic traits are a physical side effect of something we have missed by focusing on autism alone.
We may have blood tests done and be told, nope..not one allergy and that's fine, but if I don't do it and I have missed something then even early intervention therapies would be a waste of time.
My son is skinny, very light weight for his age but he wasn't always so little. I look back at his pictures and I see a chubby little guy. When I talk to the doctor about his weight we have always had the same conversation. He is a picky eater, I can't give him vitamins because it messes with his system and it risks weight loss. The one comment that has always grabbed my attention is..well, you are skinny to.
Yes, I am skinny to but does that mean he is just built that way? Maybe or maybe not, but just simply looking at me doesn't rule out a possibility his body isn't processing, and I don't mean just his mind.  Picture a large women bringing her child in for a check up. The child weighs in off the charts, would a doctor address it or would they look at mom and say...well, your overweight to. For some reason I just don't think that would go over well.
So my new approach to my son and the medical community is one thing at a time physically. Rule out or in anything that may be disrupting the way his body can process, because he can't tell us if that's the case. Maybe, just maybe his body is trying to tell us something and everyone is so hell bent on getting him to meet social expectations, the physical expectations aren't being met. 
Constipation seems to be a major problem for kids with autism, and for our son it certainly is. Is that really an autistic problem? Could be but what if it's not. Autism is a neurological difference, right along with many other things people face.
 I have ADD and I will apologize now if you are eating your lunch but the best way to get the point across is to ask, if someone who has ADD has unorganized bowel movements.  You see to assume constipation is because of autism, is a little silly to me. I do know when the constipation begins...the autism intensifies.  His mind reacting to what is stressing his body, and I am convinced in this day and age we are putting our bodies through an enormous amount of stress.
 Remember the old saying our moms and dads used to say.."your like a human garbage disposal" In our society now, the answer to that would be.."no, I am more like a chemical dumping ground" We can't assume all the toxins we consume won't effect our bodies physically. After all, it's proven to in labs everywhere.
Like many people with autism, your body can't directly communicate with you...or can it?


Thursday, July 12, 2012

What Would You do...

This video is interesting and inspiring at the same time. I can say every parent with an autistic child goes through some kind of verbal judgement at some point...so watching this tells me, there really is more people out there that understand and care then we feel like there is. It takes that one person to stand up for the rest to feel strong with them...be that one person!

Wednesday, July 11, 2012

Move Slowly And Wait For Society To Catch Up..

   What would a perfect world be like for families dealing with autism or any different ability? Here is what I would have liked to see when the autism came our way.

   I would have liked to open my phone book and looked up autism, to find options. People trained specifically in what we need, who will say to me..."first I am going to spend time with your child like a family member or caregiver would do. I am going to spend time getting to know him, playing with him, interacting with him as you would. I will do that until I am comfortable implementing a strategy to feed his gifts. I will not get out a jug of bubbles and see how angry he gets when I stop blowing them because you already told me he gets frustrated when he can't communicate. I will trust you as his parent when you explain to me what his autism brings to the table, because you are the expert until I understand him nearly as well as you do. I am the only person he will be seeing because I understand the more faces and places he is thrown into, will overwhelm him." Then I would also like to flip through my phone book for schools and find programs built just for kids with sensory differences. Without having to settle for whatever is available and hope they might know what they are doing. An education system built for the needs of each child and based on understanding.

   I would like to hear someone say to me...I am tossing out the guidelines for autism because I have never met an autistic child that fits directly into them. I am not setting out to fix your child or force him into the social norm, because I have never met a child or adult who is socially perfect. Some of the greatest contributions to our world were made by people who didn't fall in line and people didn't always understand them, so it is perfectly OK for your child to be different. We aren't going to talk about the cause of autism because at this point it's here and it's not a disease. The emotions you will feel towards autism are largely due to society and lack of knowledge, not the difference in your child. I will not allow you to blame every little thing on autism, because a child is a child and we are going to remember that every day.

   Yes, this would be a perfect world for many people and would help parents to feel strong and confident in the diagnosis, which is also a word I have grown to dislike because it puts the difference in a disease category from the start. 

   Wouldn't it be nice if a parent who has just been told autism is going to be a part of life, could feel confident and secure in whatever they decide to do from that point on. If I ruled the world or if our son ruled the world, this is what would evolve for all of the families effected by autism. For now we move forward very slowly, taking time to stop and breath. Maybe then society will have plenty of time to catch up.

Tuesday, July 10, 2012

Slow Way Down And Put Your Running Shoes On!

   I have a few reasons I started this blog, the first one being so people can understand how autism effects us. Even then you would still only be learning one experience and they are all different, but I am very grateful to be able to share how autism effects our lives.Another reason is when I started looking for support that was positive and without comparison, it was harder to find then I thought it would be. I am still a part of support groups and read what people are going through all the time because I want to learn about there experience to.

   When someone says, kids with autism don't understand danger, I don't agree with that. Our son is brave that is for sure but he is also very careful and rarely gets hurt because he seems to inspect danger ahead of time when it comes to simple things. I used to think he was not aware of big dangers such as cars in parking lots, but when I started to really think about how he processes the world I began to slow way down. I had to stop being in such a hurry all the time because I wasn't giving him time to take it all in the way he needed to. No, I don't always have time for this but when I do, it clearly makes a difference for him.

   As an adult who can barely focus for more than a half hour at a time I am blown away by my sons focus. Lets say we are outside by a street and there are cars. He is playing and he knows there are cars but across the street a leaf is blowing in the wind. He starts to go towards it and it seems he has no understanding of the danger. Well, I don't think it's a lack of understanding I think it's the focus on the leaf. It's to powerful of an interest and he is focused on the leaf and the movement, the busy street just became a thing of the past.

   Toddlers are that way in general but you throw a twist of autism in with that and you have to put your running shoes on. As a parent you have stopped your child from being hit by a car, but the autism is still focused on the leaf and now you might have a meltdown on your hands because you just put a brick wall in front of the focus and it hasn't processed.

   If you read symptoms for autism you might find yourself picturing a zombie of a child that won't look at you, won't speak, never listens, shows no emotion, and when they are not beating there head off a wall they must be running in front of cars with a lost look on there face.This is not what autism is like for us, and that list of symptoms can create some negative images for people who aren't effected.I started to hate the symptoms of autism because no child falls into all of the symptoms. That's what is tricky about autism, it's not so clearly defined.  I tend to think the only way autism will ever be completely understood is by getting to know 1 in every 88 children on a personal level. For now, keep your mind open and spend a day looking for the things that could completely distract you if you had no control over what your mind wanted to absorb. At the end of they day you might just realize how many really awesome things you don't process while your rushing through life. If you are caring for an autistic child...slow way down and put your running shoes on.

Saturday, July 7, 2012

Flowing With Ability, Not disability


I have found with my sons autism and this could be the case for anyone who has a difference, pity is a common problem I don't care for. I don't want pity for my son, or pity as his parent. I have also found many people seek pity, they complain to no end, blame the difference for certain behaviors. Yes, some behaviors I have no control over and neither does my son, but at the same time when his difference is clear, I don't want anyone to feel sorry for either one of us. I certainly don't feel sorry for myself and I refuse to allow my son to feel sorry for himself as he tackles life.

I have also found along this journey many people complain about what could be considered just the ups and downs of parenting in general, but they become engulfed in autism and at times it becomes hard to know what's autism and what is just a child just being a child. For example, eating dirt. My son had a taste for dirt and that may have been sensory related but he was a toddler at the time and well let's face it, kids eat dirt from time to time. Unless he is turning his cheek to waffles and snacking in the yard at ten years old, I am not going to worry to much just yet. There is a balance somewhere in there and often, it is very hard to see clearly.

When I talk about my son’s difference I focus on the strengths. Yes, I talk about the challenges so the people around us have some kind of an understanding of why we get certain reactions to things. I want the people in my son’s life to understand that he is flowing with ability, even with a diagnosis that is a disability. Do I avoid some situations that may cause a negative reaction? Yes I do if I can, but I also tend to want him to surprise us and sometimes he does exactly that. The important element is being given a chance to surprise us and the chance to be around people who know he is capable.

            So from time to time, and more often than not, If I am flying through a grocery store and trying to avoid my sons flying limbs...you might see while I'm dodging those flying limbs I can still smile back at you. Maybe it's a challenging moment of the day but it's just a moment and when that moment is over, we still have our smiles. Those smiles are real, because like our autistic son I don't see the logic in faking a smile. Enjoy the moments good or bad because they never last and then....a new one begins.

Thursday, July 5, 2012

Love The Surprises I Didn't See Coming.....

     If there one thing I have learned among hundreds of things with my sons autism, it's that he always surprises me by reacting to things in a way I didn't see coming.
 
   I was worried about the 4th of July, the faces, the chaos that comes with holidays, and most of all wondered if he would be afraid of the fireworks. This year we spent the holiday with some of my family at a condo. With plans to head out on a boat to watch a huge fireworks display over the lake. Why was I worried? well, a life jacket was a new thing for him, a boat was fairly new, and he has always slept through fireworks. So I had tons of questions going through my mind. Would be put on a life jacket and be OK with it? Would he be OK with being on a boat? Would be be able to process the fireworks without being afraid of the sound?
  
    All these questions running through my mind and really no way to know, until we do it. If it all goes wrong, well we push on and get our answers, but there is always that part of me praying he will surprise us.  This year....was full of surprises! He took to his cousins like he lived with them on a daily basis. He grew excited when we put the life jacket on him. He loved being on the boat, now he didn't leave my lap and barely moved, but when he was on my lap he was totally relaxed. To the point he fell asleep sitting up and just feeling that ease in him was the best feeling in the world.
  
     When it came time to get back on the boat and head across the lake to watch the big fireworks, I was still wondering how he would react. He loved watching them and was totally calm, even with the sounds and boom that rattled the boat. Sat back totally relaxed and let one little tiny.."yeah!"  No, he didn't eat much and no, he didn't stay still much but with our son, just to feel him at ease and relaxed really was just the best feeling.  Many kids get extremely excited when they like something and you have to remind them to calm down, but when Phillip finds something he loves he calms right down and takes it all in, every second of it.
   
    On that note, I am grateful for the times I am totally surprised. The times all my worries and constant wondering is answered in a way I didn't see coming. It's interesting how something that requires life on repeat can also find so much peace in something out of the ordinary.