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Autism and Sensory Overload

There is something hard for me to admit as a parent. For years I did not understand my own son and his sensitivities to different items. One minute he would hide and cry from a vacuum cleaner, but the next he was dancing to loud music. Another day, he might be smiling and happy, but moments later he would shut down and crumble before my eyes. I knew something more was going on that I could not and probably will never understand. Of course, without a point of reference and a diagnosis it is hard to convince other adults that your kid is not simply being an out of control brat with no manners.

Autism and Sensory Overload

This is the life a parent of a child with autism lives with every day. We never know when we wake up if it will be a calm day, or a day filled with anxiety and sensory overload. What is sensory overload? It is a reality for most people living on the autism spectrum. Kids who are learning the social cues of life in a world filled with neurotypical rules are stuck trying to learn to cope with items that you and I may take for granted. That clock ticking away in the classroom could be like nails on a chalkboard to me. Those fluorescent lights that buzz and flicker which we learn to ignore or never notice, could hurt a child’s head and eyes and make them more sensitive in an environment.

To this day, I still have to remind myself that when NHL thinks I am yelling at him it really may be his perception. With everything else in the room, car, or store going on, my regular talking voice may be too much for him to handle. Even several years into our autism diagnosis, I still have to stop and remind myself that just because it is not bothering me, it may be highly alarming to NHL. What’s harder for me to grasp, he does not know anything different. These heightened senses that can lend themselves to moments of sensory overload are his norm.

Curious what it may be like? The other day someone shared a link to a post on TheAutismSite.com. They included a video that everyone working or living with people who are on the autism spectrum should watch. It really is an eye opener and like no other I have seen before.

The short video breaks my heart and the words at the end are beyond powerful. There truly are no words, just moments where I know that sharing this will help more people to be aware. As always, knowledge is power and so is educating others about those individuals living on the autism spectrum.

It's Me

Some of my other posts about autism:

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Autism and Perception

Perception seems to be a buzz word when it comes to living in the world of autism. This is a good thing and a bad thing at times. While an older child may look like they are coping in a certain social situation that they have been taught, they may actually be falling apart on the inside. Talk about your sensory overload moments. Here they are nervous, upset, and working their hardest not to do something that they are told by neurotypicals is unacceptable. At the exact same time, they are also trying to do what they need to do in a specific environment, and continuing to deal with other stimuli that we take for granted. Personally, it hurts my head and mostly my heart to think that this is what my son is going through each and every day of his life. He can’t simply be a carefree child, he has to be shown how to do things and just accept them, even if he may never completely understand it. While some may say, but he doesn’t know any different – that does not make it right and means he has less rights to these moments.

Autism and Perception

Just because a child is laughing and seems to be enjoying something, they may just be going along with the group because they do not want to appear awkward or left out of the group. Meanwhile, they have no idea why they are laughing, they are anxious, and all they really want is to have friends and people that understand them. Of course, everyone looking at this picture will think that the child is having a great time because they see a smile and laughter. This delayed reaction to what is really happening allows for a lot of mixed up messages about the child. Later on when they decompress and feelings, emotions, and words come out, they are raw. Tears flow from not only the child, but the parent that so desperately wishes they could make it stop and help others to understand.

As I have said before, being an autism advocate has moments that you just want to erase from your mind and never go back to. Unfortunately, many of them happen over and over and over again. You get a tough skin with time, but having to constantly fight can be draining.

Autism…

  • does not define a person, it is just how they are wired.
  • may mean that a person has a hard time replying to others in a social situation and they can be flustered finding the right words in conversation.
  • means that just looking at a person may not simply tell you the whole story. Their reality versus perception can be very different
  • often requires a person to cope and not be able to express how they truly feel while in that moment.
  • can cause anxiety when things change, or the person is not used to a social situation.
  • does not mean that a person lacks empathy or does not want friends. Most of the time they are even more in touch with emotions and they crave friendship, but too often are afraid to hurt others by saying or doing the wrong thing.

Please know that this post is not me whining about autism, a specific situation that happened, or life. I would never change my loving and amazingly sensitive Aspies, but I would change the ability of others to understand them, be more flexible, and help them not have to worry about what everyone else thinks about them. Knowledge is power and so is educating others about those individuals living on the autism spectrum.

It's Me

Some of my other posts about autism:

NOTE: The image above contains my words over gray-illusion created by 10binary that can be found on OpenClipArt.org.

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Advocacy on the Go

Last Thursday, I spent five hours at a local middle school for a Common Core Forum with many government officials and Commissioner John King from the New York State Department of Education. It was nerve wracking leading up to the event because the media had made it seem like it would be horrible with crowds, traffic, and police present. These statements may have kept some of the people away. Of course, many may not have been able to make it simply because NYSED made the forum at 4 in the afternoon when many would still be at work, barely getting kids from school, and beyond.

Thanks to my father getting the boys at school, I was able to go early. I met up with a friend who had made some signs in case we wanted to use them for silent protest in our seats. When heading out to the event, I focused on wearing warm enough items to wait outside and taking a smartphone that would keep up with updating and live Tweeting. I finally decided this even would be a great test for my Motorola Droid Mini that I received as a member of the Verizon Lifestyle Bloggers.

Signs for the first Common Core Forum

We were at the school an hour and a half before the event started. When we finally got into the building, we each took a number in case we wanted to talk. In addition to this, we were given the rules for the Common Core Forum. These rules were not out there before the event because so much happened quickly after Commissioner King canceled the Town Hall Meetings with the NYS PTA and scheduled this forum with Assemblyperson Patricia Fahy.

Rules for the NYS Education Forum with Commissioner John King

While waiting for the Forum to begin, I was checking into places on my phone. I was able to share these ruled via Instagram, and also post on Facebook groups to let others see what was coming from NYSED. Then, as the crowds were still filling in, I was able to Tweet out to people to please come if they could because it seems to be very calm outside. Finally, it was time to begin.

Common Core Forum October 24, 2013

While I only took a few pictures, I was Tweeting as much as I could. I also shared photos from time to time in various places. Thank goodness my phone was able to keep up with me. With all of the heavy use, it was just down to 30% battery after almost three hours of non-stop social media use.

Some Tweets from Common Core Forum 1

Some Tweets from Common Core Forum 2

As you can see from my Tweets, it was a powerful experience. It was wonderful to see that I was among countless other parents and educators that were upset and worried about the future of public education for our children. Thanks to my phone and the battery life, I was able to keep in touch with TechyDad, the boys, and post information about the meeting in real time while hardly worrying during the five hours of constant use. I have no doubt that this will only the be the first of many meetings that Minnie will be heading to with me while I fight to be a voice for fixing the educational reform that has damaged so many children already.

It's Me

Some previous posts about the educational world:

Disclosure: As a member of the Verizon Lifestyle Bloggers, I received the Motorola Droid Mini to test out and share ways that I use it in my life. There was no other compensation. I am a long time Verizon customer, and all opinions are my own.

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I Do Not Love the New York State Department of Education

There are days that I love New York, as the corny old slogan goes. Of course, recently there are a lot of days that I am not a proud citizen. The politics of education have always been there, but the true colors are showing more and more each and every day. As a teacher and parent, I am disgusted to see what is happening in the classrooms throughout the state, including the school that my boys attend. The level of frustration in children, parents, teachers, administrators, and dare I say even districts is becoming more and more clear.

Public School Parent Advocacy

Children are confused with instruction, crying thanks to over testing, and not learning skills that will be essential later on in life. The tears at school frequently continue at home when it is time to tackle homework that often looks like a foreign language and is almost always developmentally inappropriate. Parents are starting to question what is happening and to doubt the propaganda that is handed to us from NYSED (New York State Department of Education). It literally makes me ill because nothing is based on studies and most items were written by people that are not educators.

I feel horrible for the teachers currently in the classrooms of New York State. They see the horrified looks on little faces and must do what they are told or fear losing their jobs. Their new task is being an actor and pretending to be happy while teaching from scripted modules (engageNY). Gone are the days when you are a trusted professional who knows the needs of your students. Now your every move is watched and scored. Teaching to the test is required because the scores count against your new state rating. Forget authentic lessons that actively engage children to think outside of the box. This can not happen when Common Core driven sheets require all kids to follow the same steps for all work.

In recent weeks, I have skipped a few blog posts here and there. A lot of this is because I have been reading up and working on my new mission of Public School Advocacy. This is not a work of fiction, this is the reality that is happening in pretty much all schools in the Empire State. Thanks to Commissioner John King canceling Town Hall meetings after what he perceived as rude special interest groups (you know concerned parents), more parents are seeing the light. They see that it is time to stand up for our children and question what is happening in our schools. Since the local districts are required to follow items from NYSED, families want answers from Commissioner King and the NYS Board of Regents members. OF course, it really goes higher than this. Governor Cuomo is someone that also needs to answer some questions. He is the one that signed the fate that our children are now experiencing. He is the one that has set a state moratorium on schools that fail. Why? Well it is all about the privatization of public schools. There is a lot of money to be made in this business and the educational needs of our children are being sold by our elected officials.

Parents are once again being offered the opportunity to attend forums with Commissioner King. I fear that this is simply going to be a “pony show” where he tries to fix the bad PR from the last few weeks. I cringe that it will be even more scripted than the engageNY modules. NYSED and Governor Cuomo need to realize that we can see what is happening in the schools and we need answers. We need solutions to fix the mess that they have gotten our children into. They need to listen and get that we are not just rude and angry for no reason. Our reasons are the children we see missing out on their public education who are crying that they hate school and want to quit. I cringe and try not to think about what will happen if we do not  change the items that are clearly not working and hurting our next generation of citizens.

Today I will be attending the first of the Common Core forum meetings with Commissioner King in Albany. I look forward to respectfully listening to him and then watching the power of parents. New York State families, we have the ability to make a difference and do something historic right now. Our children deserve this and we must not back down or give into political pressure at the expense of our kids. I know my kids will know that I fought for them and hope that one day they will understand why it was so very important.

It's Me

Some previous posts about the educational world:

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Public Education Advocacy

For months, I have been biting my tongue about something that has been on my mind practically 24/7. I am a teacher and while I may not be in a classroom, I have been watching the public education system that my children are in fall apart. I am an advocate and I should not be afraid to get the word out. Yet, prior to heading to Atlanta for TypeACon, I was cautious at best. My blog posts about education were vague, guarded, and I thought I was protecting my children. The fact is, I wasn’t. The reality is that it was fear of possibly never getting another teaching job based on my blog. The four inspirational women below made me see the light and for that I am eternally thankful.

Cause Blogging and the New Media Activist

The session on Cause Blogging and the New Media Activist sparked something in me. Moderator Ilina Ewen and speakers: Fadra Nally, Sarah Pinnix, and Chrysula Winnegar explained that we need to find something we are passionate about and use our voice.

I know what I am passionate about. Not only am I invested in public education as an educator, I have two young sons who deserve a proper education and should not be guinea pigs for companies using them to get rich.

I sat there in the room with my mind going a mile a minute. I knew what I needed to do, but did I have the guts to do it? Could I finally say enough is enough, I am not going to hold back and perhaps words that I write can make a difference to another parent that does not know the way the system is working against our children?

Then, on the last night of TypeACon, I walked over to Fadra Nally to thank her. I told her that I knew my cause and I just had to figure out the way I was going to attack it. Then I admitted to her what had been holding me back. Do you know what she told me?

Wise words from Fadra Nally at TypeACon

That is right, Fadra said “So what” and asked if I really wanted to go back into a classroom. I do, but not with the current state of the system and I know it is not going to change without a fight from parents. I have enough on my plate trying to work the system for my children and can not fathom APPR, Common Core, constant testing, and not being able to do what is best for the KIDS.

Now I am going to be more vocal on my blog and beyond. Parents in New York State and other locations need to know the truth about out children being used as data points to make companies rich. They have the right to know that their kids are being over tested and not taught in a developmentally appropriate way. Parents need to know that the blame game does NOT start with the teachers, they are innocent victims in this. The teachers are forced to do what they are told or they will not have a job. The blame game in New York State goes to the Board of Regents that hired Commissioner John King to head NYSED. The finger pointing belongs to districts that have refused to stand up and say enough is enough with the high stakes testing, teaching to the tests, and claim of more rigor in the classroom. Our children need to learn the basics, they need to trust educators.

Public School Parent Advocacy

We as a group must stand up and fight back. Rather than sit back and accept what the schools are doing we much be vocal and let them know that they are failing our children. Educators need to be in the drivers seat, not politicians and companies only looking for money at the next generation’s expense. We were always taught to listen to the schools and follow them. Well I am here to tell you to stop. Get the facts, see past the propaganda (especially in NYS with engageNY and Common Core) and get out there to other parents and help them to fight for our children.

It's Me

Some previous posts about the educational world:

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