If you have never...

 If you have never.....

Sat down to be told your child has a disability and handed a diagnosis to confirm.
Been treated like you don't know your own child by therapists or doctors.
Lost family, friends, or a spouse due to not accepting that diagnosis.
Cried with your child due to physical struggles even doctors can't help you solve.
Solved the problem on your own and eased the struggle for your child.
Been called a bad parent.
Gone days with only what seems like minutes of sleep.
Sought strangers online who can possibly offer support because none exists in your personal world.
Gone days, months, or years repeating just one small word with the hopes of hearing it back.
Cried because that word was spoken.
Cried because you fear it will never come.
Left a public place carrying a screaming and hitting child with a smile as you go.
Cried when you got to the car.
Fixed hundreds of meals gone uneaten.
Cried because your child sat down and took a bite.
Searched relentlessly for supplements that will take the place of nutrition that you know is not there.
Celebrated because you found one that was accepted.
Had to refuse events that you want to be at, repeatedly.
Placed locks on windows and locks on doors for your child's own protection, no matter what age.
Planned to attend an event based on sound, crowd, and escape route.
Celebrated because it went better than expected.
Cried because it was to much and the escape route failed.
Celebrated a moment of progress for a child and parent you have never met in person.
Explained a behavior only to know the person listening thinks your insane.
Signed up for a program that sends someone to your home to take over, just to take a nap.
Wished you had access to a program that offers that.
Driven or moved long distance because that is the closest helpful therapy available.
Been unable to move or drive long distance and do not have helpful therapies available.
Fought with an insurance company to cover it and lost or won the battle.
Tried numerous diets with the hope one works just a little.
Gone weeks, months, or years without taking a break because you are your child's only voice.
Been told your strength is superhuman, only to know you are in fact not superhuman.
Wondered if your doing it all wrong.
Understood the progress made, no matter how small, means you are doing it all right.
Had someone tell you, your child might go on to live a normal life.
Sat and thought about a "normal" life and realized it's all bull shit.
Been overwhelmingly grateful for a teacher, therapist, or friend who gets it.
Accepted circumstance and learned more than you could ever imagine you would have in life.


   If you have never experienced these things and many more it would be ideal to not tell someone what does or does not cause autism. It's autism awareness month and that seems to bring out the people who think they understand but there is much more to understanding autism than just reading about it online or knowing a statistic. The experience is a crazy ride full of celebrations and heartaches and living it is so much more than a few "study suggest" articles blasted out on the Internet. It's not autism argue cause month, it's not autism vs vaccine month, it's not make autism parents want to crawl in a hole month. It's AWARENESS month and many people are feeling to many are not really aware at all. It's not about just being aware of autism. It's about being aware of the effect and feeling what others might feel because that is how understanding is created.

   According to Wikipedia.org
 Awareness is the state or ability to perceive, to feel, or to be conscious of events, objects, or sensory patterns. In this level of consciousness, sense data can be confirmed by an observer without necessarily implying understanding. More broadly, it is the state or quality of being aware of something. In biological psychology, awareness is defined as a human's or an animal's perception and cognitive reaction to a condition or event.

Don't let the research drive you mad...

   In honor of Autism Awareness month I think it's important to give people a perspective on why an autism parent might sometimes disengage from a cause conversation or grow a bit frustrated with the science/research we are given. This blog is especially important for the parents who are new to an autism diagnosis. A new autism parent will go through the cycle of convincing themselves they can find the cause and will in fact drive themselves partially insane trying. Today I am listing all of the studies I have come across just in the last two years on the cause of autism or possible connections to autism researchers have provided us with. This list is off the top of my head and I know more autism parents could add and probably triple the length of the list.

Vaccines
Genetics
Inducing labor
C-sections
Lack of oxygen during birth
Diabetes
Gestational diabetes
Flu shot while pregnant
Swine flu shot while pregnant
Flu while pregnant
Fever while pregnant
GMO
Obese mom
Obese dad
Age of mom
Age of dad
Age of grandparents
To much TV
Pollution in the air
Pollution in the water
Linoleum flooring
Chemicals in household products
Flame retardant in furniture
To much Tylenol
Tylenol given before vaccine
Yeast overgrowth in the body
Gluten intolerance
Cows milk intolerance
Taking antidepressants while pregnant
Random change in brain development between 15 and 18 months
Gods punishment for fathers sins and yes that is a real theory I come across believe it or not.

   Autism parents are not just utilizing extreme patience with their overwhelmingly amazing children, they utilizing extreme patience with the research given to us, both good and bad. One thing we know for sure is that it is not due to anything a parent may have done wrong, although according to this list a new autism parent could easily feel that way. We also know, according to research, autism can be connected to just about anything and that is exactly why everyone should be aware and understanding.

CDC's position is that vaccines...

 .
   By now most of us have been informed on the new numbers in regard to autism, a 30% increase in two years and this stirs up some questions or more of them. Some new questions and old questions which all bring no certain answers. My son will be five years old this year and hopefully able to enroll in the school district in the fall, although that's still to be determined. One of my many fears with beginning public school is of course of updated vaccine schedule. He will be due for another MMR and this is a touchy subject for most. I understand the importance of vaccines and I also understand why so many avoid it. I understand both sides of the argument but my own personal choice is to avoid until I am feel 100% satisfied my son's immune system can tolerate it. Problem is, the only way to find out is to do it and that is a risk I am not willing to take after working so hard to make progress.

  There is to much telling me my son's body will not tolerate another vaccine and I stand firm on that decision until someone can tell me beyond a doubt he will be just fine. Not data or online articles but my own child's immune system tolerance. No two are alike and that is 100% certain. In my quest to find faith in the CDC I simply asked them directly, which we all can do, and the answer was worth a share. Keep in mind, I knew I would not receive what I was asking for and I can only imagine the eye rolling on the other end but the first line of the CDC response I found interesting. Interesting because they state clearly, in regard to autism, we are perfectly safe. A bold statement that would have lead me to believe every child with autism is the same and considering something as simple as skipping a probiotic can aggravate my child's autism, I am still on my quest for faith in the CDC.

My question:  My son will be turning 5 this year and I am told due for an MMR. He received a large round of vaccines before turning 2 and in my opinion, suffered neurological damage(autism). This has not been proven or disproved. I want to protect my child from disease but I fear another vaccine will cause more harm to him. I understand the CDC research claims the vaccine is process safe and would ask you, how can you confirm my son will NOT suffer any complications from another MMR? Can you send me a statement taking responsibility for any autism related side effects, such as regression in general if we chose to move forward?  Autism is permanent and any complications could also be very permanent.
Thank you


CDC Answer:

Dear Jennifer:

 

I understand your concerns about your son receiving any product which may worsen his condition.  As you note, CDC’s position is that vaccines have no role in the cause or aggravation of autism, or autism spectrum disorders.

 

Detailed discussions about autism, vaccines, and other related concerns are here:  http://www.cdc.gov/vaccinesafety/Concerns/Autism/Index.html

 

 

MMR vaccine can cause a variety of adverse events, including fever, rash, and much less commonly, severe allergic reactions, seizures associated with fever, a blood disorder called idiopathic thrombocytopenic purpura, as well as possibly encephalitis, or brain inflammation.  The vast majority of children, particularly with the second dose of MMR vaccine, have no significant reactions at all.

 

You should discuss your concerns with your son’s doctor(s), and assess the benefits and risks for your son.  No one can offer a guarantee he will have no reaction to this vaccine, any other vaccine, or any medication for that matter.  All we can say is the risks are very small in general, but the decision to vaccinate should be made by the parent(s) and healthcare providers together.

 

CAPT Raymond A. Strikas, MD, MPH, FACP

U.S. Public Health Service

Education, Information, and Partnership Branch

Immunization Services Division

National Center for Immunization and Respiratory Diseases

Centers for Disease Control and Prevention

1600 Clifton Road, N.E., MS A-19

Atlanta, GA  30333

 

  

The beheading of a Teletubbie ruined our afternoon.

   The Ipad has made me a lazy mother and I admit that with shame but it is a fact. My older kids didn't have technology beyond a TV when they were little and I had to teach them verbally everything I wanted them to know. With the Ipad I can buy an app, check it out, hand it to my son and go make banana bread. Lazy mother is the only way to describe what that convenience has done to me and I know I am not the only one.

   The other day I got a taste of reality and what can happen when you put your faith in an app, an Ipad, and the convenience of stepping away to do other things. My sons favorite app and it's an award winning app with a common core educational goal. He loves it, I love it, and it's one of the only apps I actually spent a couple dollars a month on for him to continue progress with.
  
   Agnitus is the name of the app and in between lessons a child can access animated videos like a lot of apps offer. Fun stuff for a four year old until this comes into play. I hear the music and go see exactly what he has accessed and to my surprise he is watching a chainsaw beheading of a Teletubbie and I cannot even shut down the video going back to the app. I have to erase the app completely without regret of course and done quickly. I notice on YouTube this ridiculous video has received almost 200,000 views and I can only hope that is not due to kids ages 2 to 8 enjoying that fabulous app mom purchased so she could go make banana bread.

     

 

 
    I contact the app developer to ensure they understood what was happening with their app.  This was the response I received back from them.

Hello,

We sincerely apologize for the inconvenience and we totally understand your concern.
The issue has already been addressed in our latest version i.e. 2.1.0

Please update the program's current version to the latest version on all the devices. The issue will not recur.
You can also hide the videos by following the below mentioned steps:



1. On the Parent Dashboard, go to Settings

2. Scroll down, under "Animation Videos", you will see "Show Animation Videos"

3. Tap it to "No"


Moreover, it will be helpful for us if you could please share the iOS version as well.
Thank you.

Ansaria
Agnitus Support Team

   Inconvenience was an odd choice of a way to describe this. To me an inconvenience is a frozen app, an app that won't load, charged to many times, or just an app that works poorly. I am not sure the hammer and fire ball to the crotch of a Teletubbie falls into an "inconvenience" category. At least it's doesn't for a 4 year old child but my favorite part of the response was asking me to share the iOS version as well because it would be helpful to them. Because marketing this app is a good idea? I did not update this app I also would highly recommend anyone who has it, to go in and access the animated videos to ensure brutal violence against Teletubbies is not part of your child's day. Now, back to a lot more alert and less lazy parenting.

I am not an exhausted autism mom.

   I am not a good advocate, I used to be but not anymore. I have a numerous reasons why and it starts with the simple fact I am an not an exhausted autism parent. In fact the only reason I am ever exhausted is choosing not to go to bed at a decent hour some nights. Plus I have three children I have to adjust my mind for and each I have to parent a different way but autism plays a small role in that.

   I am not a member of any online groups with a negative title such as Autism Sucks or Exhausted Autism Parents because the title of some of those groups turns me away before I could ever participate in them. I am not trying special diets, anymore, or concerned about food allergies although if my son would eat a bigger variety of food other than pizza, peanut butter, and cookies, who knows I might discover some. I am not concerned about where he falls into the social order as long as we see some form of progress and even the smallest win is good enough for me. I am not concerned about what people think he should be doing because what people think is irrelevant.

   I don't engage in cause debates anymore because I know what the cause was in our lives and I don't need to debate it. I am not pro-vaccine or anti-vaccine because picking a side is impossible when you weigh all the arguments. I don't tell people my son is autistic unless they ask because it shouldn't matter and it never does until I say it. I am not bothered when people stare at him because people tend to stare at things they are trying to figure out and I don't take it personally. I smile and go about the day knowing they have zero impact on tomorrow and knowing 95% of the time they aren't trying to offend me or my son.

   I have no complaints or concerns about my son's behavior and the reality is he impresses me daily with his sense of humor, kindness, and never stop trying way of doing things. He can speak a little and I was told without 40 hours of therapy a week that wouldn't happen, but it did and a little is a whole lot better than not at all. He is 4 and not potty trained but I consider all of the amazing things he has accomplished and I know he will accomplish that as well with time. If it doesn't bother me to wait until he is ready than it shouldn't bother anyone else. He is not violent to others or himself and I have never seen a hint of that ever being an issue and he is extremely sensitive to how others feel both emotionally and physically.

   There are two things that actually do still bother me when the topic of autism comes up and the first is when someone assumes he isn't paying attention. Treating him the way the autism stigma has taught them to. By that I mean they might think he can't emotionally connect with them or they are afraid to try because they have been taught by the definition of autism he could meltdown or he might be to disconnected to try. To Distracted? Yes, that is a fair assumption but disconnected, absolutely not. The second is when someone says to me "Kids with autism grow up to live "normal" lives all the time." Always said to be encouraging and it is a positive statement, depending on if a "normal" life is the goal. I don't know what a normal life is because I personally have never had one or know anyone who has. I suppose it would be living independently and finding a 9 to 5 job like the rest of the us but when I picture my son as an adult a normal life isn't the first thing that comes to mind that I want for him. Happy is the first thought I have no matter what kind of life takes him to it.

Ten things that are free and could help.

   There is a few things I have adapted into life with my son over the last two years that have helped him drastically to go easy through the days. These things don't always work of course because autism is an immense force and none of these things a parent can run out and buy to create an immediate fix or change. I will tell you now there is nothing someone can purchase or an apps a parent can download that will push back autism but there are ways to challenge it in daily life that take adjusting from the way we are taught to parent.

1. EASY does it. In other words it's okay to step back from pushing to hard. Charts and progress reports I see as good information to have but the only expectation I have is some type of progress no matter how little it may seem. It's never little.

2. PATIENCE is you and your child's best friend. Not the kind of patience most of us have but as my mother puts it "supernatural ability." The way I see it, my son is a constant mimic and repeats everything he sees but autism challenges him to control himself. As long as he sees the people around him utilize extreme patience, he mimics what he sees. No, not always but I will say his patience at 4 with an autism twist is impressive.

3. STAND YOUR GROUND. I can't count how many times people have told me what I need to do for my son. Some of the advice given to me over time has been fantastic but I know when I hear advice that is flat out not a good idea because I know him. Even trained educated professionals can give very bad advice based on what they know about autism but a parent knows habits, rituals, and the personality of their own child and that has always come first for us. To many parents become defeated by this and saying no is okay to do. Easy to forget when you are buried in paperwork with a multitude of people telling you what needs to happen all at the same time. Stop and focus on what you know could help and what you know will not. Sometime what will not work creates a storm that lasts much longer than the moment you tried it. If that happens and it will, start over.

4. NEVER compare. An child with autism is different with abilities that often the parent sees when others don't. When a child without autism is standing next to your child and the difference is clear, don't dwell on it. Number one reason when everyone goes home at the end of the day every single child challenges a parent in one way or another and every single child has abilities not everyone sees.

5. FILTER your life. If you find yourself surrounded by people who refuse to accept that autism cannot be fixed, surround yourself with different people. It's easy to forget that a child who cannot communicate well or seems to be in another world is listening to every word spoken. Those words matter.

6. SLOW ADJUSTMENTS are okay. Changing a habit is extremely difficult and changing one small step in the process over time has taught my son small changes are okay. We are still working on big ones but that is where the patience comes in. An example of how small of a change is a good one would be, on a good day having my son put socks on before his pants. That might sound irrelevant but for the way his mind holds habits, it is a big deal. It's not the change in the system that matters, what matters is it was done and he felt okay doing it. The key is to not get completely stuck in the new pattern switching it back from time to time has helped him recognize it's acceptable to do. These little changes happen all the time now and before I figured this out nothing changed, ever.

7. PRAISE is underestimated. There is almost no material reward my son will work for, other than a Tictac or a cookie.  An accomplishment means the world to him as long as it's followed with words of praise, a high five, and a ton of  "you're awesome!" Yes, he might do something for a cookie but the emotional response from others is much more valuable. Not to mention if he isn't hungry for a cookie he won't budge and every child is always hungry for smiles and praise.

8. No one is PERFECT. Forget what others expect and that I don't need to explain, just do it.

9. PAUSE. Many times when I ask my son to do something I pause and I wait. I might repeat it but I don't always have to. The typical reaction to a child not listening right away is frustration and that makes sense. You say it and expect it to be heard and reacted to right away but in this house that pause makes all the difference in the world for everyone, even siblings. When we pause the reaction comes most of the time. The pause relates to 1 and 2 above and I can't say it applies to other children but it has certainly saved us from numerous potential meltdowns and if that pause can help anyone avoid that, it's is important to add to the list.

10. FAILURE IS OKAY. One thing I know from trying to learn what helps my son is I will fail repeatedly and have but each time I discovered more about him and what not do to. Once it's done that is not totally a failure because it moves us forward even if we have to go a little backwards to make it happen.

   Ten things that could improve life we don't have to buy and they won't fix everything but they might have an impact that eases things. In the end these ten things don't just apply to raising a child with autism, they apply to raising a child in general because being a parent is not easy for anyone. In fact sometimes the hardest thing about being a parent is thinking we aren't good enough at it and that is when you see number 8 above.

  

It's easy to blame God

    I was raised in a Christian home with very strong faith in God. Every Sunday we went to church as a family and taught that God is in control of everything. His ill is the way and it's our job to trust his will which in many ways I still believe that theory but life events over the last 20 years or so have given me different ideas of the role God plays in life. If you don't believe in God in general than today's blog would be a waste of your time but give it a shot anyway because it's not a hard theory to understand.

   I used to face a hard event and grow angry with God for leading me to it. After all it's much easier to skip my own role in the process and point a finger directly at God for how my life unfolded at times. Looking back that seems a little silly to me now because my choices may have caused God himself to shake his head in frustration. Once I grasped my own actions I realized how much I ignored my role in hard times but could never ignore the strength I was given to get through them.

   Autism confused me as far as Gods will because I had no understanding of how God's will could be for a child to struggle so badly. Why would God pick on a child, was a question always in my head.  I hadn't made any bad choices and some might say the large amount of vaccines I allowed my son was a bad choice but it wasn't. It was me being a mom and wanting my son protected, judgment or blame would be ridiculous for doing what I felt was right for my child. Looking back I wouldn't have allowed it but I certainly can't say God led me to it. I can say the way the CDC has chosen to rush the process did and my faith in modern medicine signed the papers. I could have easily turned my back on the faith I was raised to have but that didn't make sense to me because the strength I was given to cope and accept the circumstances was and is something even I can't explain which I am totally comfortable blaming God for.

   I was given another dose of this when cancer took up residence in my healthy dad this year. Easily the most healthy person in our family. Not only healthy but a genuinely good person all the way through to a indescribable level. A lot of questions came from that, like how can this happen to someone so healthy and so needed in the world? Why would God do this to someone who has spent 67 years living right and just flat out treating others like they are all born as good as he is? A lot of people said to me, why him and Gods will has come up a lot. My mind has one answer to that and it's the same answer as autism, God didn't do it. Blaming God and bypassing all the things modern man produces that we know for a fact cause cancer seems a bit unfair. He didn't create the things we consume all our lives, we did. Example, I will probably start on a can of diet coke this afternoon and keep going. I know for a fact diet coke increases risk of cancer, yet I still drink it. I also know there is a trigger for autism that has not yet been discovered by science. I know my own personal opinion but it doesn't fit every story either and when that trigger is discovered I am almost positive no one will be able to point directly at God but ourselves and the choices made by mankind will most likely be very clear.
 
    I told someone earlier this year that when I pray, and I do pray, I never ask for what I want or ask why. I ask for strength to understand and get through it and that is a prayer that never goes unanswered. Along with the added bonus of finding tiny little miracles during extremely hard times that I can only blame on faith and being given the ability to see it. It can't be proven, only felt and that feeling is what tells me what is okay to blame on God and what is not. Maybe it's not about leading you to it and getting you through it but just getting you through it, that is felt and almost impossible to explain. For me the cool part about faith is it can't be explained and human nature craves proof and an explanation for everything. Consider how boring the word would be if we actually had that.