Special Needs | The Angel Forever

Category Archives Special Needs

Autism Cover for Let it Go

Posted on May 30, 2014 12:00 am by TheAngelForever

Some days you see something in your social media stream that catches your eye. Yesterday afternoon, just a few hours after my son’s IEP meeting, this happened. Someone shared a video of a young woman named Sarah-Jill Rush. This talented individual person wrote a cover of Let It Go from Frozen for people with autism. As I sat there watching the video, I had tears in my eyes.

Happy tears because…

I am hopeful for next year after our meeting and all of the supports that are in place for a major move into middle school.
I am thankful that our team tries to listen to feedback and are working with us to help my son.
I am grateful for brave people like Sarah for sharing the inner story of autism with others.
This song really hit a nerve with me and I can see my son doing something beautiful like this one day.
Social media is helping to get the word out about autism awareness.

Please take a moment and watch this video of Sarah, AKA ZebraGal, singing her version of the song.

The words of her song are powerful. A few of the lines that I really adore are:

My meltdowns illustrate this swirling storm inside
Couldn’t keep it in, heaven knows I’ve tried

Let it go, let it go, can’t hold it back anymore
Let it go, let it go, stand up straight and tell them more
I don’t care what they’re going to say
Let this girl stim on
The stares never bothered me anyway

It’s funny how support makes ignorance seem small
And the fears that once controlled me can’t get to me at all

When you listen to the video, read the words. See what Sarah is saying. She not only has accepted her autism, but she wants others to be proud of who they are and being on the autism spectrum. Sarah tells us that letting it go a la stimming and meltdowns is just part of who you are and no reason to be ashamed.

Once again, knowledge is power and so is the need to educate others about those individuals living on the autism spectrum.

Some of my other posts about autism:

Categories:
parenting PSA Special Needs

Autism and Sensory Overload

Posted on February 28, 2014 12:00 am by TheAngelForever

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.

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.

Some of my other posts about autism:

Categories:
parenting PSA Special Needs

The Other Reality Television

Posted on January 24, 2014 12:23 pm by TheAngelForever

We all know about reality television, but for many of us there is another kind. Sometimes, you watch an otherwise fictional show and it hits home so hard it feels like someone is kicking you in the stomach. I am a big fan of the show Parenthood on NBC. The show has a phenomenal group of actors and most of the story lines over the years have been wonderful and extremely powerful. I started watching the show when it began back in 2010. The storyline of Kristina and Adam and their son Max really hit home. Their son was struggling in school with behaviors that nobody understood. During the pilot episode the audience watched as Max was diagnosed with Asperger’s Syndrome. Their immediate and extended family had a lot to learn, need to adjust, and make changes for their new reality. Suddenly this television show was attempting to thrust autism awareness into the public eye.

I sat with tissues each and every week seeing bits and pieces of Max in my son. Even more painful, I saw the frustrations of Adam and Kristina and their battles with the educational world, including IEPs. I understood their pain when their extremely smart son was being held back academically because others did not understand him, his behavior, and the struggles he had just doing things that we take for granted each and every day.

Then, in June of 2012, we finally got the diagnosis I had assumed for many years and professionals kept going back and forth on. My son is also an Aspie. I am the proud autism advocate who suddenly was watching Parenthood differently when the 2012-2013 season began. As we went into meetings where I was now the parent and not the teacher, I saw things very differently. The Mama Bear that you often see in Kristina Braverman was alive, kicking, and fighting in me. Like this fictional family, so many special needs parents have to battle each and every step of the way to get things for their children. Too many times, behaviors are not understood and the kids are not helped with coping strategies, social skills, and just punished for what is perceived as bad behavior. I wish I could say it has been different for us, but it has not.

Last night, Parenthood was a hard one for me to watch. It seemed like my day was taking place on the television screen. With tears in my eyes, I understood the feelings from both of the mothers that were fighting for their autistic children and their rights. It reminded me that I have to keep pushing, moving, and fighting for my son. If TechyDad and I don’t do it for him, nobody will and he has the right to be who he is, be better understood, and get a proper education. While I may often seem and feel like THAT parent, I am an advocate standing up for my child and I will not stop.

Are you a fan of Parenthood? I would love to know your feelings about the show, especially if you can relate to a specific storyline. To those autism advocates out there, keep pushing and know that you are not alone.

Some of my other posts about autism:

Categories:
Educational Special Needs television

Autism and Perception

Posted on November 14, 2013 12:00 am by TheAngelForever

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.

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.

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.

Categories:
parenting PSA Special Needs

Seeking the Inner Voice of Autism

Posted on October 21, 2013 12:00 am by TheAngelForever

As a parent of a child with autism, I often wish I could understand how my son sees the world. There are differences and if I understood them more I could not only help NHL at home, but communicate this to others that work with him on a daily basis at school. For years before we had answers and our diagnosis, I struggled. The level of frustration for both NHL and me was clear and it hurt not knowing how to help my own child. The reality is that I can’t beat myself up because I simply did not understand and TechyDad and I searched high and low for medical professionals to give us more answers. Once we knew that we had an Aspie, we regrouped and started to parent differently. Each day, we put one foot in front of the other and take it one moment at a time. As I noted the other day, sometimes you just need to laugh or you will cry.

Several weeks ago, I remember seeing Jon Stewart mention a book that was flying off the shelves that he adored. Then my mother mentioned a post from my cousin on Facebook. Both were referencing the same book, The Reason I Jump by Naoki Higashida and introduction by David Mitchell. When I read that it was written by a 13 year old boy and was his inner voice as a child with autism, I knew that I had to read it.

I picked up the book at our local library the other day, but I have to tell you that I will be buying a copy. While I have not finished the book just yet, it is phenomenal. The introduction alone is a power house and then you begin reading the translation of this amazing young Japanese boy with autism. His words hit me hard. My son is just a few years younger than he is. I can imagine in time that these may be thoughts in his mind. More than anything, I stopped to think about our life, things that happen here, and how these words could be used. I envisioned making reminder cards for people and suggesting to some to read this rather short and powerful book. Higashida answers questions throughout the book like Q13 Do you prefer to be on your own? My heart broke reading his answer. Anxiety and knowing that things usually go wrong in social situations often make him (and likely my son) stay to themselves. Rather than be flustered, worry about what others think (causing them trouble as he says), and not knowing how to respond in a social situation they often end up on their own.

Here is part one of interview that Jon Stewart had with David Mitchell on The Daily Show that will give you a taste of what the book is really about.

As you can see, so many myths of autism are crushed thanks to this one amazing child. The level of empathy he has reminds me of my son and I have to admit I now worry that he sees too much in my world as an autism advocate. Forgive me for cutting this short, I am off to finish reading because I do believe there will be much more to share soon. I encourage everyone to take some time to read this book because it is a life changing book.