Autism Coverage Petition in Michigan

Please print out and sign a copy of this petition and return it to Representative Kathy Angerer's office at the address on the bottom. Please pass this link on to all of your friends, family members, therapists, teachers, and anyone else in the community who believes that this needs to be done now! Thank you for taking just a few moments of your time to make a difference.

How can you raise awareness and support Autism?

So many people have asked me, how can I make a difference and create awareness for Autism. Simply put, by talking about it, blogging, inviting others to join our facebook group (I Love Someone with Autism) and wearing our "I Love Someone with Autism" t-shirt. If you don't have one, we are selling them for only $10 (proceeds go to Autism charities) online at www.melissahuntsampey.com.

I'd like to share a quick story from one of our group members on how wearing a "I Love Someone with Autism" shirt makes a difference:

Jennifer was heading to a local restaurant, busy and occupied with her own life, however she was wearing her "I Love Someone with Autism" t-shirt not thinking anything of it. The young woman at the restaurant took her order and then read her shirt. After doing so, tears started rolling down her face because little did Jennifer know, this young woman had learned that her 3-year old son had just been diagnosed with Autism and she was scared. The young woman found comfort in knowing that she was not alone.

Autism makes this world an even smaller place. So many people are affected. Won't you show your support and love and purchase a t-shirt so together we can make a difference?

And the battle continues...

Interesting article that shows the commitment of Detroit based DTE Energy to work with the government to provide benefits for workers with children with Autism. Without a change in state law, workers with autistic children will have to take time off work and pay out-of-pocket for care that can cost nearly $50,000 annually. It's sad because Michigan is losing specialists that treat children with Autism because they are getting paid for their services in other states. What are your thoughts on this?

It makes me extremely frustrated that parents who have fought for their child in life now have to fight for their healthcare among other things. For a condition that affects 35 million people world-wide, why is insurance coverage such a battle?
From The Detroit News: http://www.detnews.com/article/20100622/BIZ/6220328/1001/DTE-chief-urges-Michigan-insurers-to-offer-autism-benefits#ixzz0raxg4w5v

Autism Love on June 26

Hunt Sampey Foundation with help of Melissa Hunt-Sampey and Nicole Spears are pleased to present "Autism Love", a fundraising event that will raise funds for local Autism related charities on Saturday, June 26 at Mixx Lounge in Novi from 3 - 9 p.m.

Autism Love will include; music by world famous DJ Godfather, photo booth by Mobile Exposures, strolling

hors d'oeuvres, vendor booths, raffle prize drawings, all in a light hearted, fun environment. We are pleased to have Actress and Model Tiffany Stone and Channel 95.5 Stick joins us at the event.

Thank you to our event sponsors: Mixx Lounge, Rocket Painting by Damian, Six Star Custom and Mobile Exposures.

$5 donation at the door. Event proceeds will benefit the following Autism charities: St. Louis Center, home for the developmentally disabled, Judson Center, EMU Autism Collaborative Center and Autism Speaks.

My letter to my Mom and Dad

As you might know, I am writing a book about my life growing up with a brother who has Autism. Many parents approach me and ask, “What is your relationship like with your parents now?” To answer your question, I am openly sharing this letter to my parents, who have given me so much, yet, have felt so guilty for the sacrifices they have made for my brother. I hope this helps you understand how much they truly mean to me.


To my wonderful Mom and Dad,

I have never gotten the opportunity to tell you how much you mean to me not only as my parents but, as my friends too. Until recently I have been a bit jealous of the time that you spent caring and catering to Brian. I have always understood and I think that this makes me a strong and well-rounded person for dealing with hurdles that our family has had to overcome.

Through my eyes, your life experiences in raising Brian have made you both strong and admirable people. I know that God has a special place in heaven for you because of this challenge you have mastered in raising an Autistic son.
Like many parents of children of disabilities, you were never given a manual or rule book when Brian was born to defer to with all of our unanswered questions- which made it a roller coaster ride for not only the both of you but our family. You went with your gut instincts and you made the decisions that were best for Brian and our family. I truly applaud you for this and admire the sacrifices you made to give us the best life you could consider all issues that were dealt in your court.

Until I gave birth to my son Gavin, I didn’t realize how much pride and joy a child brings you. I couldn’t have imagine what you went through when you found out that Brian had to be taken away from you for extensive testing right after his birth. The first few years of Brian’s life I’m sure were probably one of the most difficult times in your life and I know that you both might have blamed yourselves and thought that you have done something wrong to make Brian the way that he is but, again, I think that it’s God’s way for picking two of the best people to raise and handle such a child. You both have far exceeded the norm and prototype for parents and continue to care for a grown man who needs constant supervisor just like a young child would.

You have rarely put yourself first in your lives and you had to deal with pain and disappointment for many years while Brian was growing up. On top of all of this I never once heard either of you complain, you just did what you had to do to make life easy on Brian and I. I hope that my book will be a therapeutic intervention for you and that I share our families story well. There might be moments of joy and then of tears but, I hope that you read this and know that you done all things right.

Thank you again for being my biggest fans in my life and encouraging me to purse my dreams. You have always said that the sky is the limit and I can’t do ANYTHING if I put my mind to it. Writing this book has always been a dream of mine and I feel so blessed to have you in my court cheering me on as I accomplish my wildest dream. It gives me great joy to share these moments with others because our family has always been about helping others out whenever possible.

Thanks again for being my inspiration, allowing me to learn from my mistakes and teaching me about the power of being of kind person. I have always stood up for what is right because I have watched both of you fight to advance the care given to children who are developmentally disabled. A shining example was when you both fought and lobbied with a group of parents to keep Burger School for Students with Autism open, when former Michigan Governor John Engler and the Michigan School Board wanted to close it down in the early 1990’s. You knew that this school was going to change the lives of thousands of families and students over the years and stopped at nothing to keep the school open.

In closing, I’d like to apologize for anything that I might have done to make your life more difficult while raising Brian. I have always tried hard to make you proud and knowing that I will be the only child that will bring you large accomplishments I aimed to please you both and hopefully you are pleased. Much love and I can’t thank you enough for being the best of parents. Love you both!

Personal Stories

I think that Jessica Andrew’s song, “Who I am” really sums up how I interpret life. I am a spitting image of my Dad and my mother is certainly my biggest fan, I live life for me and my family, not caring about the little things in life that may stress others out and I have friends that I love and adore and that support all of my endeavors.

In the process of writing my book, I talked to many family and friends about how Brian impacted their lives. For a sister growing up with a brother that is hyper, loud and notably unique I always found myself making excuses for him for the reason why he acted out of the norm. Looking back now, I can’t believe how ignorant that was of me. Brian is special and his legacy has influenced many people and left everlasting footprints in their hearts.

Mine and Brian’s Grandma Hunt loved us both very much and prior to her death on December 21, 1991 my Grandma Hunt wrote a short letter to my brother that I’d like to share with you:

March 15, 1988- My sweet Brian, Grandma wants you to know how precious you are to me and I love you with all of my heart. You were our 4th grandchild and the 2nd grandson, and we were so happy that day you were born. You are such a cute little blonde-headed boy and we know you are going to grow up into such a good looking young man. I hope to see that happen but, if not, I’ll be looking down on your smiling face from heaven. Papa and I are so proud of you and we know you will do well in the schooling that is planned for you in the near future. You will always be a good, sweet natured boy, I’m sure and I’ll always be in your heart. Be a good boy and always listen to your parents. They love you very much!

With much love always,
Grandma and Papa Hunt

(This letter was written just 8 days after my grandma found out that she was diagnosed with breast cancer.)

With Grandparents being so deeply involved with their grandchildren these days I thought it was very fitting to share this note with you. My grandma Hunt loved my brother so much and I know that she is looking down from Heaven and would be so proud of the man he has become.

PHOTO: My brother Brian and our Grandpa Hunt, taken 2/08

Autism Conference

I got to attend a wonderful Autism conference today with Drs. Temple Grandin and Nick Dubin. I very much appreciate that wonderful words that someone with Autism shares. Please see the video clip via Fox 2 Detroit News that talks about the conference presented by Detroit based Metro Parent Magazine and Henry Ford Health System.

Outbursts in public

I was extremely fortunate to grow up with two parents that clearly didn’t care what other people whispered about my brother or the dirty looks that they gave us. On many occasions, my dad would go to the store and take along my brother, who would be about 10 years old or so, and would have a temper tantrum. With my brother looking completely normally people would whisper or give completely appalling looks to my brother who would be rolling around on the floor or taking many grocery items off the shelve. This would often come followed by my father yanking him up off the ground and my brother creating a scene yelling louder and louder. If someone got gutsy enough to say anything, that is usually where my dad would say, “He’s handicap and he can’t help it! Do you have a problem with that?” Normally it was followed by a simple, “No”. However, as Brian aged and calmed down a bit, he actually created friends at local businesses (party stores, gas stations, grocery stores and his favorite place the Dollar store). My parents were consistent yet, conscious with where they shopped because people got to know and love Brian that way. My advice is to find some place to shop that is accepting of others that are different and then stick with it.

My open letter to all Autism Siblings (MUST READ!)

Dear Siblings,

Let me first start out by saying that you are truly some of the most admirable people I know for assuming a role that requires so much of yourself and your life. You all have never asked for this to be your life and at times I’m sure that you have asked yourself, “Why? What did I do to deserve this life full of chaos, pain, embarrassment and instability?” I’m not ashamed to say that I have asked these same questions and I have had the meltdowns and even the thoughts of wanting to trade my brother for a normal one. However, we all know that this isn’t the reality and we must face the music and deal with the life we were given.

We will never understand why we were chosen to be a sibling of a special needs child and with that we need to hold our heads high, so people can look at us and see someone that has faced adversity head on and conquered it all; the good the bad and the very, very ugly. Lead by example with friends and set a new standard for the way people treat and look at children and adults with special needs. Because we if don’t stand up for them now and in the future then who will?

Remember that you are your special needs siblings’ biggest protector because as siblings you are the closest thing that they have to blood thick love. An extraordinary life long bond should develop with your sibling over time and do all that you can to foster this. Find something that you both like to do and make a moment out of it. I melted at the opportunity to share experiences with my brother Brian because as my only sibling I wanted those memories in my childhood to take along with me to share with my children.

Friends may be hard to keep or maybe you might feel that you don’t want to bring them around because you might be ashamed of what they think of you because of your brother or sister but, the truth is… what kind of friend would judge you by how your brother or sister acted? If they did then, you don’t want them as a friend. Trust me; I have dismissed friends before because of this reason and it makes you a better person for recognizing this early in your life. Do it and don’t be afraid to do it often. True friends will stick around! Please remember that it’s not your sibling’s fault that they have Autism, they never asked for this life full of pain and uncertainly. Don’t blame them for their behaviors because many times they can’t control it. Don’t blame your parents either because the pressures that they experience in their roles as parents, are so tremendous and time consuming. They never asked for this life so, make a pack, bond together and educate others about Autism. Those dirty looks that you might get from people in public are teaching moments about what autism is and how it affects someone’s life.

The innocence and brilliance that our siblings live with are profound and rather unique. They are trapped in a circulator world that has no corners to find an exit. Their world is black and white and they are always misunderstood. No answers to them are right and life is always blurry. So, help them see clearly! As for siblings, stick together and find a Sibshop. These are great opportunities for brothers and sisters of children with special needs to obtain a peer support group that provides education and activities designed around their life. Many of these “celebrations” are to acknowledge all of the contributions that are made by “us”. Sometimes finding someone else that is like you makes you realize that you are not in this life alone. They are huge confident boosters for anyone that attends and usually designed for young children but, dependent on the state that you live some are developed for young adults as well.

In conclusion my friends- remember that whatever goals you have in life no matter how big or small they are you are able to achieve them. You are special and you are able to do anything that you put you mind to. I know that this may sound cheesy but, as siblings we have conquered many challenges but, nothing is too difficult for us. Whatever you may believe in, whether it’s God or a higher being, it was no mistake that you were placed in this sibling role to a special needs child for a reason. You can run away from it or you take it by storm, bend the rules and live a full and happy life. “If you want to make the world a better place, look at yourself and make a change, the late Michael Jackson said.

Make a difference, be inspired and be someone’s inspiration.


God Bless and Much Love!

Autism Challenges American Science to Seek Cure

I am re posting the story that was on CBS News in case you didn't get a chance to read or see it: (SOURCE: CBS NEWS)


The struggles of parents and children coping with autism was in focus again when an 11-year-old autistic girl in Florida was found Tuesday in a swamp, incredibly four days after going missing.

Her story had a happy ending, but for millions of children, many challenges remain, CBS News Correspondent Mark Strassmann reports.

Autism is a brain disorder, typically diagnosed when a child is 2 or 3. Among Americans, it has skyrocketed 600 percent over the last two decades from 1 in 1,500 kids in the 1990's to 1 in 110 kids today and 1 in 70 boys.

Dr. Geraldine Dawson is chief science officer for Autism Speaks, the world's leading autism advocacy group.

"We know that the numbers are increasing," Dawson said. "It's really staggering, and we're still trying to understand why."

With autism, the need dwarfs the U.S. government response. It spends less than $300 million a year on autism research and services, yet the cost of those services and care is $35 billion dollars.

The problem with autism is no one knows for sure why it's increasing.

Like autistic kids, researchers are taking in a lot of information. The challenge is making sense of it all. Until now, they've been able to collect the dots. They just can't seem to connect the dots.

Autism experts say it's not just one disease but many and that they're largely genetic with possible environmental triggers such as toxins or pesticides and still largely a mystery. Autistic people fall on a spectrum of symptoms and severity.

"What's common among all those individuals is that difficulty in the area of social interaction," Dawson said.

As a toddler, Brennan Henderson babbled but wouldn't talk and had frightening tantrums. Adam Peterson was easily rattled, a case of endless crying over spilled milk.

"His initial response to that is anxiety, 'Oh my gosh, something didn't happen the way it was supposed to happen,'" Donna Peterson said

Socially, all autistic kids like Ben Fink have trouble connecting.

"He wants to interact with kids, but he doesn't quite know how," Jonathan Fink said.

Through therapy, all three boys have made great strides, but almost all parents of autistic kids struggle to find help and to understand the disease.

"Everybody has opinions, but there is no course of treatment," said Donna Peterson. "There is no standard of care, and as it is now, we are putting things together like with duct tape and spit."

The Solution

Part of the solution may come at Children's Hospital of Philadelphia. There, a lab's testing the DNA of autism in a revolutionary way.

Dr. Hakon Hakonarson is the hospital's director of the Center for Applied Genomics. He's found two-thirds of autistic people share a certain gene mutation.

"If I was able to fix this gene or eliminate it, how many autism cases would then go away?" Hakonarson asked. "That is as high as 15 percent - one-five - 15 percent of cases."

At Children's, Ben Fink and Adam Peterson are both part of more cutting-edge research. For Fink, it's magnetic-resonance imaging done on his brain's wiring, its fibre pathways. Autistic brains don't make needed connections, and Dr. Robert Schultz, the director of the Center for Autism Research, is asking why.

"We are all trying to figure out where are the connections, the most different from a typically developing child," Schultz said. "Ben falls right into the pattern we would expect."

The magnetic-resonance scan shows red "hot spots, indicating the brain's response to social interaction. On Fink's scan, there are no red spots, often the case with autistic children.

In another wing of the hospital, Adam Peterson's part of a different study on how quickly the brain processes sound.

Dr. Tim Roberts said the brains of 8 of every 10 autistic kids respond to a sound as simple as a beep one-hundredth of a second late.

For example, in a casual conversation about Roberts's study, autistic children would be 10 words behind or longer.

"Suddenly they would find complex conversations," said Roberts. "These delays would add up and cascade."

This could be the first imaging bio-marker ever to predict autism, potentially in the first year of life.

At the University of North Carolina, the Henderson family's involved in another study, not Brennan but his 1-year-old brother Samuel.

"They say there might be something going on but it's too early to know decisively," mother Zandra Henderson said.

Siblings of autistic kids have a 20 percent greater chance of being autistic themselves. An infant brain imaging study's focus on changes starts at six months, especially brain enlargement typical of many autistic kids.

Dr. Joe Piven is the director of the Carolina Institute for Developmental Disabilities.

"It gives us some hope that we can begin to focus on this window of opportunity before that brain enlargement or before that onset of autistic behavior," Piven said.

Until science provides the answers, parents like Donna Peterson hope for a cure.

"If someone told me that I could go to Antarctica and hike up to the highest mountain and there would be a shaman up there with the cure, if I knew that was right, I'd be packing up the dogsled," she said.

"One of the things a human being can't live without is hope," said Jeremy Henderson, father of Brennan and Samuel. "We hold on to hope because that's what gets us through."

Challenge : In adulthood, the sibs will become "parents"

Someday, inevitably, it will happen. My parents don’t want to think about it but, its true- the sibling of an autistic child will most likely take on the role of guardian and advocate in the absence of the parent or if the parent is unable due to medical issues. I always felt that anyone I marry has to take that into account. Since my husband was able and willing to take on the challenge of caring for my brother, and in some ways knew what my brother was dealing with I married him. My husband suffers with bio-polar disorder and growing up he was labeled ADHD. So, he tended to be more understanding than most guys because he too was atypical and was treated differently growing up.

My recommendations for parents are to discuss future plans with their children when they reach adulthood. Parents should talk about financial plans and any care arrangements that have been made, once typical siblings are old enough, as said in a recent article for the Autism Society of America. But this isn't a discussion to initiate with younger children — unless they bring the topic up on their own.
I found an article that showed that many of the children that were interviewed showed deep concern for their autistic brothers and sisters. One 15- year old sibling said, “I'm very interested in trying to help find a cure. I'd just like to get a neat little pill someday for my sibling that they can pop in with their apple juice and hopefully be normal." This statement is so true of many siblings. But, I really don’t know what it’s like to have grown up with a normal sibling since it was always, just Brian and I.

Being the brother or sister of a person with autism does not end with childhood. These are lifetime relationships that mature and grow over the years. The concerns of an adult sibling will be different from those of children. For the young adult, questions may focus on his/her own plans to have children and concern about whether there is a genetic component in the autism of their sibling. In some cases, young adults may also feel a keen sense of responsibility for their brother or sister with autism that makes it difficult for them to leave home and begin an independent life.
It is important that parents discuss with their adult children the expectations they have in caring for the person with autism, as well as reassuring them about the legitimacy of their assuming their own role as adults.

The questions of the role of the adult child become most acute as parents age and begin to anticipate the point when they will no longer have the stamina to continue to care for their child with autism. If the person with autism is not already living outside of the home, this may be a time when placement in a group home or supervised apartment becomes important. In those families where such care is necessary, adult children and parents must together address the question of who will assume guardianship for the person with autism when the parents die.
It is not easy for any of us to talk about our own death, and both you and your child may shy away from the conversation. Nonetheless, your adult children need to understand the financial plans you have made, the care arrangements in place, and your own expectations for them as I have previously mentioned. Having these difficult conversations will ultimately be a gift to your adult children who will know that they can honor your wishes.

In conclusion, please remember that we siblings need attention too. We are much more aware of what is going on and what expectations are as the “other” child. What parents must understand is be open with your child and talk with them about what you have planned for the future of their atypical sibling. The best conversations I have had with my mom and dad were ones that entailed their vision for what the future holds for Brian.

Picture: My brother Brian, my father and grandfather

Challenge #5: Pressures and Responsibilities as siblings

The pressures and responsibilities that a sibling has to deal throughout their life are no hidden secret. How they deal with the responsibilities clearly depends on how the parents model it themselves. For example, when shopping with my mom one day at a shoe store we noticed a middle-aged man with his special needs son. He wanted a piece a candy that was left for shoppers at the check-out counter. The store clerk gave him a piece a candy after his father said, “yes”. Afterwards he went to his younger sibling and was excited that he got a piece of candy. After he ate the candy, he went back up to his father yet again, with his compulsive like behavior and said, “Another candy, another candy,” while pointing at the box. The father then said in a very stern and loud voice, “no, you already had one piece”, the young man then went to his sibling and asked for a piece of candy”, the sibling repeated the same behavior as their parent and rudely yelled as they rolled their eyes, “No… what did Dad say… You can’t have any more candy.”

My mom and I looked at each other and our heart broke for the young man as we could tell he was crushed as to how he was talked to by his father and then his sibling. That was when my mom asked the father of the special needs son, if he could have a piece of unopened candy that we had grabbed out of the box. He then said, “Sure”. And the young man and his family went on their way. After the situation it made me reflect on what had just happened. It was clear that the sibling was modeling behaviors and actions of their parent. Some of the kids handle the responsibilities well and the others suffer with the pressure and undergo potentially harmful emotional break downs.

Similar to the 1988 comedy-drama Rain Man, written by Barry Morrow and Ronald Bass and directed by Barry Levinson Tom Cruise, who was a brother to a mentally-challenged sibling, he found himself developing an instinct and a level of protectiveness towards his brother when faced with the responsibility of watching over him. The “it’s my job” mentalities for siblings, who step up to the plate when circumstances are challenged usually happen early in ones life. Siblings instincts (like the Tom Cruise’s) usually are kicked into play when faced with a life changing situation or when something bad happens to their siblings. I noticed that I felt much closer to my brother and I was much more protective of him after the horrific episode at the respite care facility. I wanted to find the worker that intentionally bashed his face into that sink and make them feel the pain that we suffered as a family. I really matured and respected him much more for his undoubting innocence.
Responsibilities and pressures of a sibling do come with age, however if the parents model the roles and expectations from day one it usually is picked up more genuinely. Also, it’s the personalities of the siblings that I believe are fashioned to be unique and fierce. To label us “outgoing” I believe is such a loose label however, we are reactive and adaptable to any situation. At this age in my life, nothing and I mean, nothing fazes me on what Brian’s does, says or reactions. I have seen it all and been through it all.

A poem written for my brother by our cousin Heather

Brian’s Song Illustrated by Heather Kerr (My cousin)

My dear Brian, your innocents comes so natural, and your nature so mild. Purely and effortlessly being “inspired” by events, people, and ongoing surroundings, yet a creative genius in your own right, an inspiration that requires a certain sort of spaciness—in fact, it requires exactly the sort of spaciness that often traps a child as yourself.
I’m sure you have been told numerous times that you don’t understand this world. Will we ever be able to understand the mind of such a complex young man as your self? What is understanding this world anyways? Isn’t this world build upon perception, misguided interpretation? Who really understands it, maybe you get it better then we do? Are you trapped within the throws of a glorious song? Possibly, a song which only strums your name? Tell me your song….

Does your song demonstrate imagination creating new potential, dreams of new and original possibilities, not yet existing in this world? Does your song possess profound ability? Will technology ever allow us to hear the words? However, one thing is for certain and that is your melody, your keen sense of orchestration that shows a spectacle of your heart of gold. You’re unfound innocents, charming ways and gentle nature, so open, pure yet spontaneous. Is this conceivable to you, or an instinct by God’s perfect design? Can you begin to grasp your indescribable worth? Show me your song…

Brian, do you ever feel misunderstood in a world built upon expectations of perceived identity, Hollywood design, structure, and stereotypes? Brian feel fortunate that you do not have to conform to a society filled with Barbie’s and Ken’s, businessmen and stock brokers. Your heart Brian, was given complete unison in chime with the angels, a silver harp to surpass life’s demons and substitute your lyrics with goodness, wholesomeness, and purity. Seeking out every opportunity to draw out the one left behind amongst the worldly clutter. Blessed with the ability to see through transparent character and smoke filled mirrors a misguided society so ready to hear your song, yet unredeemable and deluded within our own reflections to open our ears to soak in your tune.

However, your presents is but a mere gift, a song to be sung, a shining star that opens our eyes to a world we may never be fortunate enough to ever know, only through the eyes of your song. Brian you are so loved, as a first cousin to me, and known as a brilliant singer to you, I will never be able to quite understand the cords that strum your heart. Though I long to hear your song with my ears, my eyes capture yet only a glimpse. To me your song is bliss to my soul for we may never be able to understand the depth and courage of your song.


Picture above: Me and my cousin Heather

Planning for the future

Finances and Life Planning

According to research that I’ve done and in speaking to Comerica Bank, Among parents of children with special needs:

• 60% don’t expect their child to be financially independent
• 68% have not written a Will
• 53% have not identified a Guardian
• 72% have not identified a Trustee
• 29% have done nothing to plan for their child’s future.

In a survey conducted by MetLife Insurance, 31% of the parents surveyed expect that a brother or sister with provide care and financial support for their child’s future. However, the lack of financial planning on the parent’s part will greatly affect the quality of life, government benefits and the other family members involved. Special needs planning should be discussed with a financial advisor, an attorney, insurance agent, medical providers and the other family members. This will allow for the lifetime planning needs and estate needs to be met if anything happens to the parents.

Parents need to determine who will make decisions for the child. Government benefits fall short and change frequently so you need to plan. I think that it’s really important for a parent to talk with an attorney that specializes in special needs. They will be able to help you examine your current and, future needs along with the costs associated with both. I highly recommend that you start to plan early. This also means that a legal guardian will need to be named for the child with special needs and the parents should have this person identified in the Will. According to Comerica’s Wealth and Institutional Management, planning is the key and is critical for securing a quality of life you would want for your special needs child. I know that Comerica specializes in special needs trusts but, you should find a financial institution that works best for your families plan.

Autism Awareness Day is April 2

Autism Speaks has launched a special Web site, lightitupblue.org, to highlight the campaign. The site also accepts donations to fund autism awareness and research efforts.

Helping the autism community can be as easy as updating your Facebook or Twitter status! On April 1, the Autism Society is asking supporters to change their status on Facebook and/or Twitter to “Autism affects 1 in 110. Text “AUTISM” to 50555 to donate $10 to the Autism Society. Help spread the word: http://bit.ly/bUAVRf.” For the first time ever, supporters can now simply text “AUTISM” to 50555 to donate $10 to the Autism Society. 100% of your donations will go to support the Autism Society’s mission of improving the lives of all affected by autism.

"Make a difference, be inspired and be someone’s inspiration. "~Melissa Hunt-Sampey

Challenge #4: "He's so embarrassing!"

I think that it very common for siblings to feel embarrassed by their autistic brother or sister's behavior in public, or to be reluctant to bring their friends home. Trust me, I know what this is like and it’s especially hard when you are bringing home a new boyfriend that you are trying to impress and meet your family. On several occasion, I broke-up with boyfriends soon after them meeting my brother because of their reaction towards him. I knew that our relationship would have never gone far if they couldn't accept my brother. But, the honest truth is that as a sibling, you need to surround yourself around people that are not embarrassed of your sibling. Whether its boyfriends or just friends, I usually had a good sense of what kind of person someone was by the way they treated Brian. Growing up, all of my friends loved my brother and a few of them even wrote papers about him in high school. It’s important for parents to encourage honesty and to laugh things off because things always get better.



From those typical siblings that I know, majority of them are outspoken and have no problems addressing crowds pointing out the fact that their sibling is different and if they have any questions, they can ask them instead of staring. For parents, the advice that I would give is explain to your typical child that it’s a tough job being a sibling but, you know what they are going through and it will make them a better, well-rounded person for dealing with all of this. Just this past Halloween I took my 25 year old brother trick or treating with my 2 year old son and although we got a very odd looks from people seeing a grown man trick or treat, I think it’s important to put all of the embarrassment aside and allow your sibling to have fun. Deep down this is a memory that I know that my brother will carry on forever. Every house he went to he had to shake their hand and say, “Happy Halloween”, and thank you for my candy. Once the neighbor realized he had special needs, they seemed to understand him better. I share this story because it’s important for siblings to take a chance and allow your special needs sibling to be exposed to many things, even it that means you might be embarrassed, but, in the end… who really cares, right?

Above photo: Brian at Halloween, 2009

Autism Conference-2010 "Living with Autism"

If you are interested in attending a wonderful conference on Autism, below is information.


Metro Parent and Henry Ford Health System are pleased and proud to announce its third annual "Living With Autism Workshop," featuring keynote speaker Temple Grandin – the most successful autistic person in the world.

Attendees will have the opportunity to learn strategies for coping with the challenges of raising an autistic child on Thursday, April 29, 2010 at the Ramada Plaza in Troy.

New this year! Additional breakout session and opening speaker, Nick Dubin, author of Asperger Syndrome and Bullying Strategies and Solutions.

1. Learn
2. Choose three of 12 breakout sessions offered by autism experts
3. Grow
4. Make connections with those working or coping with autism
5. Visit vendor booths from local autism experts
6. Talk to parents of children with autism during the provided continental breakfast and lunch

To get more information or for tickets, visit www.metroparentevents.com

Tip # 3: I'm scared

Challenge # 3

Some autistic children are aggressive, which can be scary and dangerous, especially for younger kids. Due to their hyper nature, parents can't possibly keep an eye on their kids every second of every day. For a typical sibling that is scared of their autistic sibling, it's extremely important for parents to take this concern seriously and intervene as appropriate. By talking to your child's pediatrician they will be able to provide you with hotline numbers that you can call if you or in need of help. Also it's really important for your typical child to have a safe place that they can go if they are upset or scared. Whether it's their room, a bathroom or a closet, by creating and identifying a location really helps the typical sibling cope with such chaos that they deal with on a regular basis.

I remember that growing up my escape was going into my room and and putting on my headphones and just listening to music. I would do this for hours at a time until I can relax and be comfortable with a scary situation.

Above photo: Me and Temple Grandin's mother, Eustacia Cutler, Author of "Thorn in my pocket"

Tip # 2

Challenge #2: "It's not fair!"
I’m sure that every parent has heard his or her child say, "It's not fair!" But for families with autistic and typical siblings, "not fair" is the reality, when it comes to one child being treated differently than the other. For parents, a crucial conversation is needed with the “typical” sibling to explain their roles in growing up with a special needs sibling. For parents, I would recommend that the parents engage the sibling on a deeper level. Henry Ford social worker, Greg Oliver gave me great suggestions, such as, involving the typical siblings in autism rallies, walk-a-thons, etc… This way they might be more likely to understand that autism affects many people and standing up to fight against autism makes them closer to a cure. By families taking autism on as a team, it allows for all members of the family to be a part of the solution. I remember clearly that my mom always brought me along to doctor’s appointments, charity events, and all things that taught me about autism. This really triggered my interest to learn more about autism and respect my brother and his disability.

For parents who are struggling with a younger child and their need for attention, I believe that creating special time, designated just for their typical child is the key for any sibling rivalry with their sibling that is autistic. Parents need to plant seeds of encouragement and let the siblings bloom. Make sure to involve them in something that is just for them. Growing up I had a few loves; writing, dance, and singing. I wrote a lot in a diary about my feelings, which helped a lot. It was a way of expression and confinement. I didn’t want to vent to my parents because they did the best they could with my brother and it wasn’t their fault for the way he acted. As I aged, I developed my writing and drafted poetry and short stories and eventually started to write this book. Dance allowed me to work hard at a craft all year, followed by a dance recital that put all eyes on me. And, to have all eyes on you is rare growing up in a house that required a lot of eyes watching my brother.

Picture: My brother Brian and son Gavin, bonding together. Summer, 2008.

Advice for Siblings

For the next several posts I will break down some common concerns and issues that many siblings try to address concluded by recommendations on how to handle them. With the great help, advice and counsel even for me by Henry Ford Behavioral Health Services, Greg Oliver, who is a social worker that has dealt with children and their siblings affected by Autism I hope that you will find my postings helpful.

Challenge #1: "Why won't he play with me?"

It’s not easy having a brother or sister that you can’t play with especially, if you are close in age and don’t have another sibling that will play with you. What is worst is that “play” to one sibling means the total opposite to a sibling that is autistic.

So, what happens when you can’t play with your sibling? Well, our solution is that you find what out what makes your sibling happy and then you can make fun out of it. For example, my brother was obsessed with radio’s and fans. You never saw him too far away from one. What I did to make a game out of his obsessions were singing along to the music on the radio or making noises and talking into the fan after he plugged them in. This way we both enjoyed them and I learned how to play with him. My best advice is to learn how your sibling with autism plays and adapt to it by making it fun for you.

Autism and the GOD connection

When you have a child or sibling with special needs sometimes you don't know where to turn for answers. Some families may turn to God for direction. As for my families’ religious activities/services, for a long time my parents didn’t go to church. My mother was raised in a Catholic church and this particular church was not accepting to frequent outbursts or an antsy young boy. Frankly, many people would roll their eyes and make you feel embarrassed. But, knowing that church is really the house of God and having a strong background in faith and religion, I continued attending church services, but at a Baptist church that I stumbled upon through a friend. I accepted God as my savior and it changed my life forever.

I knew that by attending church it would be to my parents benefit so, when I turned 16 I started attending a Church of Christ (AKA- Non- denominational) with my aunt, uncle and cousins in Livonia. It was a breath of fresh air and very welcoming to everyone. My parents started attending regularly, became members and even started to bring my brother, Brian. I think that Brian really enjoyed the interaction with the people but, sometimes he would stand up and blurt out, “I want to go home now… I’m done!” however, the people would just ignore him and smile, Pastor Mark doesn’t even blink and continued to preach on like nothing even happens. That right there is a sign of a great church and one that you are proud to be a member of. Above all, church should be the place that anyone and everyone are welcome and if you can’t go to church, then where can you go?

An Autism Journey

Wow.. Never in my life did I think that I would write a book and now my wildest dreams are REALLY coming true. With the help of one best editors, I have been able to document my chaotic life with all of the ups and downs of having an autistic brother. The funny thing is that when I was in elementary school I did write a short picture book for the young author's conference and it was entitled, "Living with a thing called Autism". So, it turns out all of long that this is what I was meant to do.

Speaking about my book… throughout the process it's been a learning experience so eye opening that it almost discourages you from the submission process. Your probably wondering why, right? Well, just because you have a great idea for a book and you have the time to write doesn't mean that a agent or even publisher will pick up on your story. Instead you will be stuck reading generic rejection letters saying that, "You are not quite right for us" and then goes your MoJo to pursue your dreams. I plan to do speaking engagements whenever possible (let me know if you want me to speak to your group!), be aggressive with my promotional plan and most importantly create a platform that allows me to be positioned as an expert in what I call the Sibling Autism Movement.

My childhood was rocky at times and sometimes revolved around my brother and what type of day he might have. He required a lot of attention and extra love. My brother Brian tended to always draw crowds, but instead of attracting them for positive reasons, he had negative attention due to behavioral outbreaks. Some of it I just blocked out completely and the others are the moments that defined my life and started to build my stronger character. I want to share my story about the good, the bad and the ugly times. My story is uncensored and reveals all. This is an inside look about what I have learned over the past 28 years about having a brother that has Autism and how it has affected and completely changed my life. The purpose of this book I hope will give the siblings that are confused and forced to deal with this disease because this is part of their life answers. Also, to educate the parents who have a child (or multiple children) who are Autistic and have no idea what it’s like for their normal child to live their life and experience adversity because they have a sibling that is different. My brother never asked for such a life so, as siblings we need to make a pack, bond together and educate others about Autism. I always say, "Those dirty looks that you might get from people in public are teaching moments about what autism is and how it affects someone’s life."

"Make a difference, be inspired and be someone’s inspiration. "

(Above photo is a picture of my brother Brian)

Restrictive Diets and Autism, do they work? Researchers say, "No!"

A story ran this morning in the New York Daily News that reports for years, parents of autistic children have promoted restrictive diets as a way to manage behavioral problems, but a new controversial report by an expert panel says there is no evidence to support that claim. The most famous parent to claim that early intervention and treatment along with a restrictive diet brought her back to communicate like a "typical" child is Jenny McCarthy. Many people know that I love Jenny McCarthy and respect her tremendously for all of her work that she has done to bring attention to Autism. Jenny found the ammunition she needed in the form of a strict dairy free and wheat free diet, an anti-fungal medication, and in various forms of behavioral therapy. She also enlisted the help of a DAN! (Defeat Autism Now!) Doctor. So, if this worked for Jenny's son Evan along with other parents, then why would reports claim otherwise?

The answer is simply the kind of anecdotal evidence that parents report of the "diet" curing their child doesn’t fly with doctors and scientists. Until they can find more concrete results, experts recommend sticking to traditional forms of care, like hyperbaric chamber treatments, which have shown promise in some cases. The wide array of behavioral issues seen with autism cases only compounds the problem of figuring out what diets (if any) could help a patient. With my brother's case, in the 80's and 90's autism was rarely spoken so, we never knew much about the disease let alone many treatment options. However, I still wonder if we were to put him on the restricted diet if he would have been different or better yet, been cured from Autism?

A family with a child with autism will fund 3 to 5 million dollars of services throughout the lifetime of the child.

Statistics show that Autism is the fastest-growing developmental disability in the United States today. This means that without adequate healthcare coverage the parents will have to pay out of the pocket costs for physical, occupational and speech therapy. They may also need psychological, feeding, social and behavioral (ABA) therapy. By paying these out of pocket costs you might have to cut corners somewhere which in turn means if you do have other kids they might be punished by your crucial decision to provide your special needs child with the care they deserve. Many parents are working second jobs or even taking out a second mortgage to make the cut.

But, truly and honestly, I can't say I know what it's like as that parent fighting with insurance companies for coverage or even writing out that check for the behavioral therapy appointment, but, I do know that as siblings we are watching our parents and we respect what you are doing for our brothers/sisters. I love my Mom and Dad more and more after learning what they went through to give my brother the life he has today. It was with early invention and good physicians and providers that my brother has a full and rich life.

What you can do: "Call Your Senators About Health-care Reform and Autism or visit out the below the link for more information:
https://secure2.convio.net/asa/site/Advocacy?alertId=333&pg=makeACall