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.
Most of the people who follow our little group know that over the past few months we have been talking with our state representatives and senators here in Utah. In addition, we have been making regular trips to our state capitol to advocate for our community, the autism community, to get the fair and equitable representation by our insurance companies to make the proven, evidence based treatments (ABA) available and within reach to individuals that so desperately need the help. You also most likely know that this year, a bill was introduced to get us closer to obtaining that goal, House Bill 69 (http://le.utah.gov/~2012/htmdoc/hbillhtm/hb0069.htm
). During this process, the autism community made their voice heard loud and clear when Senate Bill 138
) was introduced with the potential to kill our bill even before it ever had a chance to be heard. I was extremely impressed by the response of our community and the desire to do everything it took to make a difference. Being a part of this was a roller coaster proposition, with eager anticipation, to fear and back again, but I believe our position has been made perfectly clear, no matter what happens we won’t take this sitting down.
In the past few weeks of this up and down process, there has been the range of emotions; panic, anger, disappointment, joy, etc. Now, those who know me well know that I despise politics and find our process frustrating, often dirty. I really don’t want to lump everyone into the “dirty”category because I know there are those in our political system who are very good people holding true to the idea my hero set forth, “A government of the people, for the people, by the people (Abraham Lincoln).” That said, politics is a necessary evil and our system is better than anything else and should be respected for what it is, our system and one that we must respect. But I digress, let’s get back on point. About two weeks ago, I received a call from a friend of mine who is working on the passage of HB 69 with news of a new proposal, one that had been negotiated over the week preceding this point. At first I was frustrated, discouraged and entirely disappointed. I found myself asking more questions than we had answers for like how would this impact the community here in Utah, would it provide the services these kids really need, or was this an “easy out” for representatives? Well, I felt maybe it was best to sit back a while and see what this was all about.
Thanks to my lovely bride who kept me in the loop during my business trip out of town, although I was disappointed by the new bill HB 272 (http://le.utah.gov/~2012/htmdoc/hbillhtm/hb0272.htm
), I’ve come to a conclusion that must be stated. Here are the facts, it is completely understood that there are sweeping changes all across the nation where insurance mandates are being passed to provide families the help they need. You can go to AutismVotes.org and view the green states that have gotten it right, enacted law and done the right thing, passed legislation. You can see that the sweep, although slow might be just a matter of time before our entire country addresses this huge need, maybe even with the “Obama Care” to roll out in the next few years. Fact number two is that as a community, we simply want the equal treatment for our kids, we are not asking for a “free meal” as has been suggested by some, we want the opportunity to allow our kids to get the treatment they need to grow into the tax paying, productive citizens we know they can become. Tax paying citizens that will contribute to our economy, not become a drain on a system that is already at a breaking point.
So, what do I think of this latest bill that has been proposed? Well, there are two things that are positive. As of today, the bill suggests that this will help as many as 800 kids in the early stages of need, ages 2 – 6. If this bill passes, this is good and much needed. As our system is currently constituted in Utah, this is 800 more kids than would have been helped previously. This is awesome! The second positive piece of this is it is a start. It’s a launching point and it will provide the potential of 800 kids to illustrate the success of these therapies. There are rumblings that this need is now getting the attention it needs and that cannot be discounted as well. That said, does this bill help everyone? Absolutely not, but neither did HB 69. What this does is puts us closer to getting a long term, fair and equitable solution for all kids, all individuals on the autism spectrum. That proposition gives me reason to be optimistic. Is it a perfect system, the answer is no, but when is there ever a perfect system.
In closing, the fact is we are not done! We cannot take this as an ultimate defeat although it might be easy to do so. This is an opportunity to push for more, push for equality and push for a better solution for our kids. We must continue to ensure our voice is heard and we do not result to sitting back and waiting for this to come to us. We must continue to take autism to our representatives and show them the need we have. This is our opportunity to bring about awareness one person at a time, or as I like to say #awareness1by1. I’m here to tell you Utah, we are not done! We will not be silent on this matter, we
will see a better solution; it will simply take time. Take this opportunity to continue speaking with your representatives, be involved and speak out for not only your child, but any child with autism. Some of our kids do not have a voice, they need us to be that voice for them. Commit to being that voice! Commit to creating change!
Last night I was browsing my email when I came across a contact from our website. A mom of a young man, Glenn Lane-Scott, had sent me a copy of the essay her son wrote about bullying at his school. This great young man chose this topic due to the bullying he has endured and considering most of our kids deal with this on a regular basis, I thought that this was a great opportunity to share his essay with you so you can share it with your children as well. That said, I would like to thank Dottie Scott for being so willing to share this with us and in turn, give me the opportunity to share it with you. I would also like
to say to Glenn, you should be very proud of yourself. By talking about this, you are making a difference. You may not see it right away, but you will reach an audience, maybe even just one person like yourself who is helped by your words. That is no small task and you should give yourself a pat on the back. Well done young man!
With that said, here is Glenn’s post:
The change I would like to see at T.H.E. is, less bullying.
I have been bullied countless times. I am extremely stressed by how much I have been bullied. I know there are other kids being bullied too. I feel like it just keeps going.
There are different kinds of bullying. Some cases its physical and some are verbal. Sometimes the verbal is worse than the physical. I have been cussed at, been told I was gay, that I don’t matter to anyone. It hurts, It feels like someone punching me.
I sometimes don’t want to eat at school in front of the other kids. They call me names when I eat. I just don’t get it. Something needs to change. I would like to help with creating a safer bully free environment.
Bullying is a hard conflict to deal with. It can make you feel sad, depressed, angry, abused or alone! I want it to STOP! I would like to work together on changing the bullies’ behavior. I think that the bullies need to know how they are making others feel. I don’t think that the bullies understand how much it hurts.
I feel like the bullying is being accepted when really it needs to change NOW! I think that if we all work together we can at least help get through to at least one bully. I am trying to deal with everything I go through and sometimes it feels like I don’t want to go tell anyone because they don’t care either.
I think that T.H.E. needs to work harder to end bullying!