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.