Yesterday our daughter Delaney, came home from school and told Robyn about an event that happened at school. Throughout the year, Delaney had told us about kids in her class that, to quote her, “are like my brother” seemingly to mean that maybe they might have a form of autism. Although I do not know this to be a fact, having had the opportunity to attend a field trip, I knew who she was talking about and think she is probably fairly accurate. But I digress, let me move on:
Delaney explained to Robyn that during an end of school tradition, the kids exchange niceties, notes for lack of a better word with each other to share what they will do during the summer or how they can get in touch with one another during the summer. Delaney is a social butterfly and is liked by everyone in her class. It is quite remarkable how social she can be. But while exchanging notes, she observed two kids that had not yet received any notes from the rest of the kids. She felt badly, so she approached them and shared her own nicety with these two kids, really making their day, a gesture that was quickly imitated by others in the class as she tells it.
This is a very simple lesson that is very important for all kids to learn, just because some kids are different, they just as deserving of our attention ; to quote Temple Grandin, “Different, not less.” This gesture also gives us tremendous pride that she has learned so much from watching her big brother over the years of her short life. Above all, it serves as a lesson that it doesn’t matter how old you are, you are never too young to be an advocate.
In the last few weeks, there have been a number of political conflicts that have impacted the autism community all across America. Two of these major events have impacted the autism community at the state level with the “shelving” of two bills in Georgia and in Utah that had the power to affect the lives of many families, strengthening their financial future, at minimal cost to states, businesses and insurance companies alike. Being here in Utah, I have been actively engaged at watching what other states have done or are doing as I compared it to S.B. 055 and was immensely disappointed when I saw the Georgia law given its death nail by going to the “Special Advisory Commission on Mandated Health Insurance Benefits” (http://www.11alive.com/news/article/279745/537/Autism-bill-backers-challenge-move-to-shelve-measure ) . Simply put, Georgia families are left to continue to be discriminated against.
Turning to Utah, after a positive move through committee, S.B. 055 appeared to have a real chance of becoming a reality, passing by a 5 – 2 vote. For many in this community, this was a sign that the acceptance and awareness was there and the next step was to simply hold insurance companies accountable and stop this discrimination. Senator Shiozawa did an excellent job at stating his case, the autism community showed up in support and in a level headed fashion, pleaded our case of why this bill was important. Those in opposition of the bill voiced their concerns, but never once were really able to state their case as to why this was not good for Utah. That was three weeks ago. At the end of last week, S.B. 055 was also given the “heave-ho” in its original form with not enough votes to make it through (http://www.sltrib.com/sltrib/politics/55924650-90/autism-bill-coverage-http.html.csp) . For myself and my fellow autism mom’s and dad’s, this was a hurtful blow. Personally, it leaves me angry, disappointed and frustrated that Utah is once again failing families instead backing the multi-million dollar insurance companies.
Politics however has given a blow to the gut to the autism community on a federal level through what is known as the “Sequester” process. As you may have seen, over the weekend Autism Votes released a report on what the “Sequester” will do to the autism community, the impact these “cuts”, often called “unnecessary and arbitrary”, will have on everyone (http://www.autismspeaks.org/advocacy/advocacy-news/sequester-here-now-what) . This leaves an entire community, 1 in 88 nationally, in a dire situation. It leaves kids with autism without the necessary support in the school systems due to layoffs, possibilities of homelessness due to rental assistance drying up and the lack of necessary support for employment assistance, but if you listen to the news both parties justify the cuts, pointing fingers at the opposing parties. Disgusting.
Here are the facts; autism is not a political issue. Autism is not a Republican or Democrat issue. Autism is however an issue that needs the world’s leaders attention. With today’s current financial situation, pushing the use of social programs or in many cases, slicing them down to nothing is not the answer. Honestly, I’m not sure that I could give you an answer that is reasonable and works, but what I can offer you is the fact that our community, the autism community, needs the rights and respect that we deserve. The autism community cannot be continually be told that their care and their access to proven therapy is denied, and furthermore, their services will be cut because of a lack of bipartisanship cooperation. It’s nothing short of unacceptable that politics plays such a large role in simply doing what is right. Unfortunately, our community has a long distance to go before being fully accepted and that is truly a shame.
In the last month, there has been a tremendous amount of discussion about autism in the news, not always for the best reasons. The media’s attachment to the Connecticut shooters link with autism seemingly caught on so fast, it in many ways was irresponsible. I recall hearing that first mention of the shooters diagnosis and worried about how this would impact the positive strides our community has made in raising awareness. For many parents, myself included, seeing the hateful posts about kids with autism have been heart wrenching, frustrating and completely unacceptable in today’s society.
Last week, I was thrilled to see a beautiful post by an online magazine I follow quite often, babble.com (http://tiny.cc/cp3uqw). The post was aimed at helping our community respond to the negative comments in a positive way, sharing the photos of our loved ones and a few things about them with “This is Autism”. The photos illustrated the hope, the dreams and the accomplishments of individuals with autism; it was truly something I was very grateful to see.
There are so many stories just like those that were told with the babble.com post, but there is also the untold part of the story that I feel needs to be talked about equally. Not for pity, not for sympathy, but for continued awareness for our loved ones. Why, you might ask; it’s to help bring the understanding full circle and we’ve all heard the comment, “well your child looks normal?”, am I right? Well, Robyn and I have heard that too many times, Kian is quiet and reserved, in class he gives the impression he isn’t taking part in class or even paying attention, in stores he’ll walk in circles as a way to cope with his surroundings and if his meal is prepared wrong in a restaurant the panic on his face is evident to the bewilderment of the server. Now, I don’t expect that in every interaction we have with others in our community will instantly be fixed by sharing these stories, but they could help along the long road of awareness we need to continue down.
There are challenges that most people will not, or will never see. There are things about Kian that unless you live it, you may never truly understand and they are not uncommon in every home of a child with autism. For instance, most people don’t understand how he needs help with simple tasks, things we often take for granted. Kian often needs reminders to do simple tasks like brushing his teeth, supervision for bathing (washing, general hygiene, etc.), more than often a simple concept for school, will take hours of at home, one on one attention and finding foods that he will actually eat are a challenge. Even with all of that, we know that we are blessed. We certainly don’t have the challenges that others do and we are grateful for that. Yet still, we think of the old adage, “Take a walk in our shoes” quite often when “fighting” with a teacher about missing assignments or lack of participation as an example. It is frustrating and exhausting all at the same time.
I am hopeful; hopeful that the negative “perceptions” of autism don’t set back any further the work we have done to raise awareness and that we can continue to find understanding in a world that is already so complex. As I said before, we as a community do not look for pity or sympathy, but acceptance and understanding.
How many of us have worried about keeping track of our kids and not having a way to find them quickly? Do you worry about being able to track down your child in the event they wander away? I know that many moms and dads, especially of kids with special needs, live this constant worry and wonder if there are tools out there to help in those moments of panic. Well, I want to share one such device with you.
I was able to test the Amber Alert GPS device first hand this past summer with my son. I found the device extremely useful in helping me keep track of him. I’m confident that this device will help you with your child.
Since then I’ve maintained a relationship with Amber Alert GPS and they have put together a special offer for friends of FAAST. Here’s a quick description of how it works and the offer:
The Amber Alert GPS device uses GPS technology and AT&T wireless connectivity to provide reports on a kid’s location every five minutes, as well as a history of where your child has been recently. The device allows parents to customize specific zone alerts around places your child frequents and will send parents an alert via email or text every time your child enters or exits that zone. The device also offers 2 way calling, allowing parent or child to contact each other if needed. Alerts can also be set up to track speed (allowing you to know if your child is in a car, or going faster than you would like) as well as notifications if your child comes within 500 feet of a sexual offender’s residence. All alerts can be set up and monitored via a parent-friendly portal available at www.amberalertgps.com. For parent’s looking for the ultimate convenience, they can download the free Amber Alert GPS Parent app to keep track of their kids with a touch of button on their Smartphone.
For the holidays, Amber Alert GPS is offering a special deal for friends of F.A.A.S.T.:
• 10% off an Amber Alert GPS child tracking device
• Free 3-pack of faceplates ($10 value)
• Free My Child ID ($30 value). The My Child ID software helps parents securely organize, manage, and store their child’s information (personal, medical, etc.) for quick and easy access. The My Child ID software is emailed to you upon placing your order.
Just head over to www.amberalertgps.com and make sure to use the code FAAST.
So let me ask the question, what does autism look like?
That’s a question that has been asked by many by many in the autism community following the insensitive comments made by rapper 50 Cent. On Twitter, a firestorm of tweets sporting the question ‘What does autism look like” along with pictures went out directed towards @50cent, including my own. To be honest, hearing (actually reading) his comments, it certainly got under my skin, it really bothered me.
A couple days have gone by and I’ve had a while to let his comments sit and digest. I’ve also had a chance to read the takes of some great people who I really respect and my opinions have certainly not changed a bit, I’m still bothered by his comments, but more than that, I pity his ignorance. The fact is, as parents of children with autism, we fight so very hard to gain acceptance and understanding for our children and the fact that he makes these comments shows that the fight has obviously not made it to him. The fact is, if I’ve learned one thing, unless you live it, it’s sometimes hard to understand it. Impossible? No, but hard none the less.
So if 50 Cent wants to know what autism looks like; it looks like love. It looks like trials and ups and downs. It looks like challenge. It looks like accomplishments, big and small. It looks like trips to therapy. It looks like frustration with IEP’s. It looks like meltdowns. It looks like, well, the life of a mom and dad of a child with autism. It’s our life. To us, autism is what we know and our son Kian is a beautiful, kind, loving child with a huge heart. He might have autism, but more than that, he captures the hearts of all those who know him. That, Mr. Curtis "50 Cent" Jackson, is what autism looks like.
The fact is, 50 Cent made a bad choice of words. Did he think he was being funny or clever? The fact is, it really doesn’t matter. He made a terrible choice of words that were insensitive and ignorant. I hope that he recognizes this and stands up and takes it like a man.
Almost 12 years ago (11 years and 361 days to be exact), I became a father for the first time. Bringing Kian into this world was frightening, nerve wracking and challenged what I had learned almost immediately. I still remember, like it was yesterday, the intense emotion I had the moment I saw him for the first time and heard him cry. I remember the tears rolling down my face as I held my baby boy for the very first time, silently committing that I would do everything in my power to give him the best life I possibly could and allow him to realize his dreams and thanking our Heavenly Father for giving me such a perfect and beautiful gift.
Now flash forward to today, Kian has grown into a great young man with many talents and quirky personality, but his road has certainly not been an easy one. With his diagnosis of autism, we’ve had to adjust as a family, as his father I’ve had to readjust the way I parent almost on a daily basis. Having a child with autism has redefined fatherhood in many ways and has allowed me to take a step back and recognize just how fortunate I have been to have him in my life. Through Kian, I have found a voice and a purpose that I may not have ever had. His challenges have become my challenge, a challenge to not only help him but give back to a community. His diagnosis introduced me to a new world, one that is often a struggle, but also one that is as close nit as you could ever find. His diagnosis has given me a strength to reach out as an advocate, speak with passion and aide my fellow autism moms and dads and even those who just need to better understand what autism is. At the end of the day, Kian didn’t just make me a father, but he made me a better man; to my wife, and to himself and our little girl as well.
On today, Father’s Day, I hope that all the dads out there can take a step back and recognize the gifts that made them a dad. I hope that we can take stock in the blessings we have, even though for many of us our roads have had a bunch of twists and turns, roadblocks and pot holes. I also hope that even though we celebrate Father’s Day only once a year, we take time throughout our days to be grateful for our kids, recognize the responsibility we have to our children and the passion we must have to be their greatest advocate.
I came across this poem but not sure how it came up in the search results, but it really resonated with me and I thought it might do the same for you.
HEAVEN'S VERY SPECIAL CHILD
A meeting was held quite far from Earth.
It was time again for another birth.
Said the Angels to the Lord above --
"This special child will need much love.
"Her progress may be very slow,
"Accomplishment she may not show.
"And she'll require extra care
"From the folks she meets down there.
"She may not run or laugh or play,
"Her thoughts may seem quite far away.
"So many times she will be labeled
"'different,' 'helpless' and disabled.
"So, let's be careful where she's sent.
"We want her life to be content.
"Please, Lord, find the parents who
"Will do a special job for you.
"They will not realize right away
"The leading role they are asked to play.
"But with this child sent from above
"Comes stronger faith, and richer love.
"And soon they'll know the privilege given
"In caring for their gift from heaven.
"Their precious charge, so meek and mild
"Is heaven's very special child."
~Author Edna Massimilla
Earlier today I shared a post on both my own profile and the facebook page and said the following:
“With today being the official Autism Awareness Day, this brings about a very special opportunity to us moms and dads to make a difference in our own communities. Although we live this each and every day, the community doesn’t always do the same. However, the media is going to be mentioning that it is Autism Awareness Day, there will be “Light it up Blue” campaigns going on all around the globe and what better opportunity is there to talk about autism openly to raise awareness. It’s more than wearing blue or sticking on our blue puzzle piece pin, it’s about raising awareness. Go out in the community, share your story, talk to complete strangers about autism and give them an opportunity to learn. What better way to raise awareness than opening our own mouths?
Please take on this challenge; you’ll be glad you did!”
Let me explain why I think this is important. First and foremost, I simply love the idea of having the bulbs and lighting up our homes, I love that all across the globe iconic landmarks are taking the opportunity to light it up blue serve as a symbol of awareness. Although the blue puzzle piece is the symbol of Autism Speaks, the “Light it up blue” campaign has become what people recognize because of the blue buildings, statues and landmarks. These are all great things. But, I’m a strong believer that we cannot allow ourselves to only use Autism Awareness day as our only opportunity to raise awareness. We simply cannot afford to make it an annual event, a campaign that comes and goes.
As many of you who follow us on a regular basis know that we had the Autism: Coming of Age event at Weber State University last week. It was a tremendous success, we had a great turnout and most of all, we had so many people, many who were part of the planning with us, express their appreciation for learning more about autism, about the struggles as mom and dad we face, but more importantly, the struggles our kids face and will face as they grow older. These are real issues and issues that we cannot afford to wait for an annual reminder to our communities. Speaking out every day is a must. We have to be a collective voice, with our schools, our law enforcement, our government officials, our friends and family. We can light it up blue each and every day but simply opening our mouths to raise awareness, talking to anyone and everyone we can. Once we take that opportunity to do so, we will certainly be “lighting it up blue” and creating the awareness our community needs.
Just a couple parents on a mission to help support families of autism and Asperger's find the resources they need for a successful life.