Special Needs | The Angel Forever

Category Archives Special Needs

Sparkle Minnie Ears in the Name of Autism Advocacy

Posted on October 16, 2013 1:18 pm by TheAngelForever

Being a parent advocate for any child is an important part of the world of parenting. Then, add into the mix, being an autism advocate each and every day while living in the moment. This is my world, and while I would never change a thing, it can be challenging and overwhelming at times. Over the last year, I have learned how to use my voice to more effectively communicate with the individuals that work with my son. The team that works with him listens to me and knows that I will back them up and be as patient as possible.

Of course, when a meeting crops up and you are the parent, nerves can get the better of you. For some reason, these meetings were so much different on the other side of the table as the teacher. No matter how many meetings you prepare for, the serious nature can get to you. This morning, I was done feeling that way and sent out the following Tweet:

Before I knew it, I was pulling out my ears, sharing a photo, and debating this.

For ten minutes, I debated what to do. Then I felt the tension in the house as we left toward school and put my ears on. First, I wanted to see if the boys would notice. They did, mostly because my depth perception getting into the car with said sparkle ears was a bit off. Ooops!

As we walked into school, I was smiling and less nervous. The kids and I had fun seeing the reactions of a parent in New York walking into a school with Minnie Mouse ears.

The best part was keeping a straight face and acting like I was doing nothing out of the ordinary. Seriously, it was therapeutic. Yes, my Minnie ears gave me laughs and brought me smiles as I was heading into a meeting.

When asked why I was wearing them, I admitted it was to make me laugh so I wouldn’t cry. The reality was this little bit of Disney sparkle and magic helped me through this autism moment. You see, Disney reminds me of a place where I know my son can be who he is without the stresses of every day life. He can be happy, we can all be kids at heart with less worries, and most people do not judge. That is magic and sometimes you just have to bring that little bit of Disney home with you and use it when you need it.

Oh and a special little thank you to Emily, your post yesterday made me think of wearing my ears today.

Categories:
Disney parenting Special Needs

Changes with Disney Guest Assistance Cards

Posted on September 23, 2013 12:00 am by TheAngelForever

If you have followed along with my blog for a while, you know that I am a huge Disney person. I basically grew up going to Walt Disney World, spent my honeymoon there, and have taken my children there multiple times in recent years. On our first trip to Walt Disney World with the kids in May of 2009, I worried about my oldest son. He was in kindergarten, but due to his low muscle tone he would have trouble walking for a long time and get exhausted. This would lead to anxiety and system overload that we did not understand at that time. This was several years and multiple trips before we confirmed that he is an Aspie. We rented a double stroller for the boys and brought a note with us. I had been told that we may want to use our stroller as a wheelchair on a day when NHL was struggling. What I did not realize at the time was that we were given a GAC – Guest Assistance Card along with a sign to put on the stroller for CMs to see. We only used the stroller parking option closer to a venue once. We never used the GAC for anything else because our son did well. Thanks to the Fast Pass system and way that we approached the lines he was able to cope.

Not all individuals with Special Needs are able to do this. For many reasons, the lines, queues, crowds, and other items can be overwhelming to them. The GAC helps them to experience the magic of Disney in a way that they never dreamed possible. Then, this summer, we all heard about people that were trying to abuse the system. This meant that Disney took a look at the Guest Assistance Cards that are currently being used. Last week, rumors started to circulate about the new program that Disney will have for guests. Rather than wait for details, heated posts and more have been going around and around.

Saturday evening, I received a statement from Disney and want to share it with you in case you have not read it:

In our continued efforts to keep you in the loop of Disney experiences that touch families, we would like to share an upcoming change in the Guest Assistance Card. Disney has an unwavering commitment to making our experiences accessible to all Guests. After careful consideration, we will be replacing the Guest Assistance Card with the new Disability Access Service Card on Oct. 9 to create a more consistent experience for all our Guests while providing accommodations for Guests with disabilities. Until Oct. 9, we will continue to use Guest Assistance Cards. We look forward to sharing more information about the Disability Access Service Card as we get closer to implementation.

We know that you often share news from Disney with other moms so we have prepared the following questions and answers.

We appreciate your support and look forward to sending you more details as we get closer to October 9^th.

In addition to this, some frequently asked questions were included:

How will the new Disney program work?
The Disability Access Service Card will offer Guests a return time for an attraction based on the current wait time. Guest Assistance Cards will continue to be in effect until Oct. 9. We look forward to sharing more information as we get closer to implementation.

Did Disney receive assistance in developing the Disability Access Service Card?

Yes, Disney is engaging disability groups, and Autism Speaks was instrumental in providing feedback as we developed this new process.

Why is Disney making these changes?
Given the increasing volume of requests Disney receives for special access to our attractions, we are changing our process beginning Oct. 9 so that it creates a more consistent experience for all our Guests while providing accommodations for Guests with disabilities.

Who will be eligible for a Disability Access Service Card?
Our goal is to accommodate Guests who aren’t able to wait in a conventional queue environment due to a disability (including non-apparent disabilities).

Will Guests on wish trips also use Disability Access Service Cards?

No. Guests who are visiting through wish-granting organizations will have access through a separate program.

What should Guests do if they have concerns?
Guests should contact Guest Relations to discuss their assistance needs.

Changes are hard for people to accept, especially when all of the details are not available. As the parent of a child on the autism spectrum, I have learned to roll with the punches and take everything one day at a time. I can not get bogged down with rumors, speculations, or here-say. Unfortunately, rumors are running rampant right now about the Disability Access Service Cards and we need to try to be patient and trust Disney.

Disclosure: As someone that went to previous Disney Social Media Mom Celebrations, I receive information from Disney. I was not asked to share, but wanted to because this topic is important for so may families.

Categories:
Disney DisneySMMoms Special Needs travel

Project Understanding Autism

Posted on July 22, 2013 12:00 am by TheAngelForever

Autism Ribbon

Almost ten years ago, I knew that my life was going to change. I was very pregnant at the time and awaiting for the arrival of our first born. TechyDad and I spent a lot of time going places and doing things that we knew would be more difficult with a baby. We knew that our wants would often have to be put on hold because of the needs of our child.

For nine of my years as a parent, I pulled my son along to events even if he was upset and worried about items. I figured he had to learn to cope, adjust, and go with the flow. Then, just over a year ago, we finally realized that something I suspected over five years before was true. Our son has Asperger’s Syndrome. While some may say they are sorry, I am not. My son is not deathly ill, he is simply wired differently. As I have written before, I am very thankful for answers so we can assist NHL in his journey. His Asperger’s makes him who he is and I would not change him. His quirks means that he adores simple things, but is fascinated with all complex mathematical and scientific theories.

Of course, that same wiring that has so many positive items that go along with it has draw backs. He gets overloaded more easily and often does not know how to express this in what society has deemed a socially acceptable way. These are items we are working on with him at home and in school. With time, he will gradually get better with this and already has come a long way. When we are home, he simply shuffles off to his bedroom for a safe place to cocoon. When with adults that understand, they are able to redirect him to calm down and refocus. Last week, he went to camp and it was an amazing experience. They got NHL and I can not say enough amazing things about the camp director and her staff. They helped him, and he thrived. It proves once again to me that environment is huge in how most kids will autism will react. If there is caring and understanding, they can thrive. If there is yelling, screaming, and refusal to be flexible, they won’t.

What I desperately would like to change is how people perceive individuals like my son who are on the Autism Spectrum. My child is not a spoiled brat trying to get his way. He is not fidgety because he ate too much candy. No, my son is doing the best he can trying to deal with constant sensory input that is bombarding him 24/7 and 365 days a year. Imagine this happening to you all the time. No doubt it would make you anxious, upset, and afraid of people, places, and things. Of course, NHL knows nothing different. This is the way he likely believes that everyone sees the world.

My new goal is to try to help NHL’s peers, our family, and other adults in his life to understand autism. Not only is this to help my child, but others as well. The more we educate society the better things will get for others that come along this path. This blog post is therapeutic in a way. I am venting because I am flustered with some people that refuse to understand. We are not trying to ruin your plans if we say we have to cancel. We are trying to prevent what may be a meltdown at something. We are not being rude and constantly refusing something, we are doing what is best for our child. With NHL’s diagnosis, I promised myself that I would not feel guilty about what I had forced him to do in the past. I can not do that. Instead, I am going to listen, watch him, and do what he needs at a given time. If someone refuses to understand, we will move on and stay away from that in the future.

Someday, I hope that everyone will understand autism. The reality is that if you do not educate yourself on the facts and listen to myths without getting to know the amazing kids and adults, you are the one missing out.

It's Me

Disclosure: The Autism Awareness ribbon icon above was created by Melesse and comes from Wikimedia Commons.

Categories:
parenting Special Needs

Today is World Autism Awareness Day

Posted on April 2, 2013 12:00 am by TheAngelForever

Not only is today World Autism Awareness Day, but April is National Autism Awareness Month and it feels very different to me this year.

This year, we know that our son has Asperger’s Syndrome. For many years, I suspected that my son was on the spectrum. Almost a year ago, we found the one medical professional that really got to the bottom of everything that was going on. She listened, watched, observed at school, and tested our kiddo. She knew that this was a topic that upset me. You see, for many years we had people say yes and no over and over again. It wasn’t necessarily that the diagnosis of autism bothered me, it was the how. As an educator I am told not to judge people too quickly. Yet, several times, so-called professionals would meet my child and diagnose him within ten minutes. They didn’t talk, play, or interact with him during that time. They were talking with me and made the call on nothing else.

Autism Ribbon This year, I am an autism advocate and warrior. I am on a mission to make my son’s life better and to help others to understand him. He may be an Aspie, but it is not who he is. Thanks to an amazing autism community in the Capital Region and beyond we have found resources that have been beyond helpful, met fantastic friends, and educated ourselves and others.

The truth is we know NHL best and we are the ones that are going to battle to get him what he needs to be as successful as he can. His autism diagnosis has not been a bad thing, it helped us to finally have answers. It has allowed us to better understand our son and also TechyDad. You see NHL’s diagnosis actually opened his eyes to what he had been living and dealing with his entire life.

Yes, the geek that I fell in love with and married almost 12 years ago is also an Aspie. It explains a lot and has helped our family. TechyDad has been able to explain to NHL things that he has done in his life to learn how to relate in certain stressful social situations.

My biggest wish for all those living with Autism in their lives is to find acceptance. Too many people judge, point fingers, and blame. Rather than do this, talk to families and friends you may know who have members on the spectrum and get educated. Do not look at the media for answers because they often sensationalize too much and are not always honest about things. If you find yourself with an autism diagnosis for your child, it can be overwhelming. I had time as we sought answers to learn to accept things. Still, it was hard to know where to turn first. My advice is to quickly look for support groups in your area. Find other parents and families that you can work with and who can help you learn the system. Knowledge is power and so is being part of a very supportive community.

If you take one other thing away from this post please remember that autism is a neurological and not psychological. People with autism are wired differently, not worse.

It's Me

Posts about autism written by TechyDad can be found here including Asperger’s Syndrome Resources. I have linked to some of my previous posts about autism above, but others can be located here.

Disclosure: The World Autism Awareness Day logo came from Autism Speaks and other materials can be found on their website. The Autism Awareness ribbon icon above was created by Melesse and comes from Wikimedia Commons.

Categories:
health awareness parenting PSA Special Needs

Songs of Autism Acceptance

Posted on March 15, 2013 12:00 am by TheAngelForever

Autism Ribbon Imagine a world where children were accepted by their peers no matter what. They didn’t have to worry about acting, looking, or speaking differently. Kids could be themselves and embrace who they are for life. No bullies would be around to remind them about their quirks and how it does not fit in with the societal norm. This is the world I wish my children and yours could live in, but we don’t. Instead, we need to remind our kids that they are unique individuals and we would not change them.

As a parent of a child with autism, I would never for a minute want to change my son. He is an Aspie. It is just part of who he is, but does not define him. NHL is smart, funny, serious, curious, loves math/science/geeky things, and amazes me each and every day. In almost ten years, he has had to deal with cruelty that I never experience in my 30+ years. It is heart breaking, but I know he will show the world what he can and will be.

Someone in our local autism group posted a link to something that caught my eye. When I clicked over, I was immediately in awe of an amazing man named Brady Rymer. He is a singer who started a project called Love Me For Who I Am. Rymer made an album of songs that was inspired by the children at a New Jersey school that have autism and other related items. Rather than write a summary, I think it is best to watch the video of the story. I know when they talked to a boy at about the 2:00 mark, I had tears in my eyes thanks to his words.

Yes, the words of that one young boy really hit me. He loved the fact that the song talked about not fixing children with autism and loving them for who they are.

When we listened to the songs, both of my boys got the message. My kindergartener even said he loved the words and doesn’t want his brother to change. This truly was music to my ears. Yes, we are buying the MP3s with all of these fantastic songs of acceptance. Here is a great video that they made with all of the kids.

The video shows the beauty of this project and how it can help to raise awareness and acceptance. I, too, hope more people will not try to fix and change my son, but love him for who he is.

Disclosure: The Autism Awareness ribbon icon above was created by Melesse and comes from Wikimedia Commons.