Dear President Obama: From American Autism Families
By Kim Stagliano
Yesterday President Barack Obama took the oath of office for his second term as POTUS. The President looks older, with more than a touch a gray, which seems to be the case with each second term President. The First Lady left behind retro for a chic and sleek new style. And the Obama children have grown from young girls to beautiful young ladies. I wonder if the President and First Lady appreciate just how blessed they are to have two typical girls who are able to learn and naturally develop into teenagers before their eyes? It's hard not to compare my own three girls - who have grown taller and more beautiful, but whose developmental gains are hard fought - if won at all.
Four years ago I wrote a piece for HuffPo called, "If the First Child Had Autism." From the post:
As an autism Mom, I thought about how different the day would be if the First Lady had a child with autism. Here's one scenario:
The First Lady is holding her child's hand tightly as they walk toward their seats, her smile tempered by the interference from her autismometer, the scanning system she uses at all times to gauge her child's mood, temperment, ability to manage the input and to anticipate a meltdown. In her other hand she holds a metal ring on which hang dozens of plastic cards with simple pictures and words. It's an odd accessory.
The boy is wearing a pair of bulky, Bose noise canceling headphones to help him tune out the roar of the crowd. His eyes are cast down to the floorboards.
The lines laid out before him capture his attention. He stops. He sits down.
A brief look of panic crosses his mother's face. She erases it. Then gently, lovingly signs, "stand up."
If you had an opportunity to tell/ask/beg/cajole/berate (choose your own verb) POTUS about what your child, your American family needs during the next four years - what would you say? Leave a comment.
Dear President Obama, Families are so in need of educational support for their children with autism. My Grandson, 10 years old, has been denied the private schooling that is necessary to educate and help him be an active member of the community. Four accredited doctors, including two from Boston's Childrens Hospital, have all agreed that David needs a therapeutic environment. He has been enrolled in the City of Brockton's schools since Kindergarten and I have to say for the first few years, they did a good job. Now, at 10, it is evident that they can no longer fill his educational needs. Yet, understandably because of the expense on cities and towns, they say "they say" as if they are jury and judge that they can support his needs. Yet, they have not for the past 3 years and he is going down hill. They even denied home tutoring. David is a bright boy with a fantastic sense of humor, interested in becoming an electrical engineer one day. He has that capability and has a lot to offer society if only given the chance and the education, coping skills training and genuine interest.
At this point, now our family has to hire a high end lawyer from Boston which will costs his family thousands of dollars that they do not have. Something is seriously wrong with this system and we need legislators to step in for the sake of these wonderful children. The educators in Brockton appear to deny what is the truth and they predetermine what is not true. In other words, they manipulate and even lie in order not to have to have one more child be supported in a private setting. It is becoming disgusting, insulting to the families and the children. Where is the shame? Where is the genuine love and caring for these children? I do not get it. What have we become? In God's name something must be done and very, very soon. I plead with you to please help. I know there is a lot on your plate and I, for one, so appreciate already all that you have done so far inspite of the challenges. I ask your help, as a righteous man. Please,please help the Autistic community. Please. Thank you.
Posted by: Joyce Houlihan | March 23, 2013 at 07:29 PM
As a patriot who doesn't believe in vaccine exemptions I trust Obama will be offering the services of his beautiful daughters for the anthrax vaccine trials.
Posted by: Blind Science | January 25, 2013 at 12:20 PM
I would say the following:
Dear Mr. President,
My 20 year old son has autism and I am afraid for his future. I don't know who will look after him when my husband and I are gone and that scares us to death. We have no extended family that are willing.
There is nothing set up in this state or in this country (that I know of) for children with autism in the way of proper housing and social activities where they will be safe. Is this something you can look into? I know you want your children to grow up safe and happy and this is what my husband and I want for our son.
There is a lot of abuse out there and much of it is done by "normal people" to people with disabilities. I think children and adults with autism are at the highest risk for abuse and punishment because many have behaviors that are not in their control, OCD and sensory issues making it hard for the "normal" population to understand and accept them.
Please tell me that the safety and future living conditions of people with autism will be on your agenda for your second term. If you can tell me that you are working on these issues I will be able to go to bed at night and stop worrying so much about my son's safety and his future. He was abused in the past by people that were supposed to be helping him and I pray to God that it will never happen again when we are no longer here to protect him.
Regards,
Phyllis
Posted by: Phyllis M. | January 25, 2013 at 11:43 AM
Nothing will change under President Obama regarding autism. What you see now is what you will get from this year to January 2017 when he leaves.
Posted by: Raymond Gallup | January 24, 2013 at 09:42 PM
Nothing new, just an example how Big Pharma spreads the wealth to your Favorite elected offical in DC.
Now who do you think they are thinking about when they pass laws?
http://www.pfizer.com/files/investors/corporate/2011_2012_jun_pac_report.pdf
Our best action is to inform all parents of the vaccine risks. Take the profits out of Big Pharma's pockets. This battle isn't going to be won by those sympathic Congress man and women in in DC. They are like addicts and like gambling your child's health away for money.
Posted by: Allie90 | January 23, 2013 at 09:04 PM
I would ask why the greatest country on the planet hasn't had the guts (or the balls) to ban a metal in vaccines that has been proven through many years of research to be poisonous to the environment and humans. And why the government has turned a blind eye to those families that need help, either financial, teaching, or physically with home help. Yes, they do have a few programs in place, but for those who fall between the cracks, there isn't any help at all.
Posted by: Michelle Heath | January 23, 2013 at 10:03 AM
Obama has told the American people "I'm against selective vaccination," his health care plan pays for all vaccines in full, and his HHS secretary has admitted to telling the media not to report on those who say vaccines cause health problems.
I'm not looking for help or support from a man who is complicit with the damage and destruction of children's brains. I'm just counting the days til he's out of office.
Posted by: Madvocate | January 23, 2013 at 09:56 AM
The POTUS was able to make gun laws a little stricter just 30 days after a 20 children were killed as shots were fired by various guns into their little bodies. No disrepect.
So how many untold number of children will be disabled, or die due to shots from various vaccines? How many years really can a blind eye be turned, because the entire public is not in shock on the same day, when thousands are harmed each year.
Do we take to the streets all at the same time to show their faces - and ask media to take their picture and ask those who cannot speak anymore to speak?
How many decades must we keep telling this same story, that only grows in numbers?
We have become too quiet talking just to our own group, repeating this subject to each other. Going over study after study and what come of ouf of this?
This is not working.
I don't believe nothing can be done about it.
Posted by: Allie90 | January 23, 2013 at 03:19 AM
The president could move health care in any direction he wants simply by exposing the endless fraud of the vaccine program.
I did not see a family photo of the Obama's getting their flu shots or Gardasil for the girls.
Posted by: cmo | January 22, 2013 at 10:54 PM
...............holding her child's hand tightly as they walk toward their seats, her smile tempered by the interference from her autismometer, the scanning system she uses at all times to gauge her child's mood, temperment, ability to manage the input and to anticipate a meltdown......
Even at 11 years of age, I still hold my son's hand in the anticipation that his surroundings will trigger a "meltdown."
How many mums with 11 year old boys do that?
Thanks Kim
Elizabeth Gillespie
Posted by: AussieMum | January 22, 2013 at 06:33 PM
Just a Pharma Muppet..
Posted by: ANGUS FILES | January 22, 2013 at 05:06 PM
Dear President Obama,
Living with Autism
I bring four unique perspectives.
Through the eyes of my son with Profound Non Verbal Autism with Epilepsy,
As a Dad,
As an individual on the High functioning side of Autism until May Called Aspergers
syndrome
and As advocate founder director of Non profits.
Just a couple of statistics to get us on the same page.
1 in 88 Children have autism. Which is now a 13 year old Statistic. 8 year olds as of 2008
1in 54 Boys. 2% of Boys
every 11 minutes a new child receives a diagnosis
4:1 ratio of boys to girls
80% of the carers have never had their needs assessed and 74% don’t get any support for being a carer. #Autism Respite
85% Unemployment. Among those with Autism who aren’t currently employed, 59% don’t believe or don’t know if they will ever get a job.
63% of young people w autism have been bullied at school. Rising to 75% when we look at secondary school age, and 82% of young people w HFA
autism is the fastest growing developmental disability
$35 Billion in annual costs a figure expected to significantly increase over the next decade.
Illinois is 51st out of 50 states including District of Columbia for looking after those with special needs.
Last Place!
Our county Vermillion is 98th out of 102 in health care.
My Son Tanner is 15,001 on the wait list for residential housing with only 6 openings available in 2012 and with budgets cuts less space this year.
lifetime care is estimated to be between $3.5 Million and $5million for a family. That figure can be reduced by 75% with proper treatment and therapy.
I started blogging as therapy for myself. I suffered two heart attacks at 38. I was totally absorbed in my career with JCPenney Department stores moving to six states in sixteen years. I was the guy at the front of the room preaching buy our stock. When the stock dropped from $86 a share to $8 and I lost over a million dollars on paper, dealing with a child with Special needs and a wife that was at wits end. I did not really care what anybody felt or even if they read what I wrote. I was just trying to survive. You see Just over 10 years ago my son walked into the living room, at 9 AM on a bright Sunshiny day on July 4th and said "My name is Tanner. My name is Tanner." Never to speak, chew, use the restroom. Use silverware or drink independently like he used to do. He regressed into profound Autism.
I am here today just to raise awareness, educate a little and Plant seeds that might one day lead to help and Answers. I am not here to overwhelm you, give you glassy eyes and cause you to be paralyzed. I will start with my usual conclusion and we will see where it leads.
I feel that all service and support groups should now have Autism on it's radar. Before you Invest in another project outside of our community there are things you can do for families dealing with Autism right here. I call them either Microbenefits or 3wkbenefits. Pick a Family. Pick a project. Pick a date. Say a prayer and get it done.
something simple like a movie and a meal for respite, Helping shop for groceries, Build a fence, buy an IPad, accompany to a sporting event. Get to know your neighbors. I often hold AMBUCS up as a group doing the right things for many with special needs.
Why am I such an active advocate now? A few years ago I went to a large Autism conference. I had been blogging for a few years from my bean field near Catlin. I was introduced at the transition to the next national speaker. All stood up and clapped. Then in the middle of the speakers speech she stopped and pointed towards me and said...You know something you wrote on the internet stopped me from committing suicide. Everybody stood up and clapped again. I cried.
Tanners life at 15 is very narrow in focus. He enjoys looking at magazines such as People, Sports illustrated, and Oprah. He Jumps, Dances and Runs. He communicates the need for food or a new magazine by physically prompting us or through a picture exchange system. Since Thanksgiving he has had seven severe seizures. Epilepsy is something that happens at puberty for about thirty percent of families dealing with Autism. He has very sporadic sleep patterns waking up 2 to 5 times a night. In Tanners case he is Hyposensitive. He does not taste, feel heat and cold or sense danger like we do. In his case Autism is a disability and not a gift in any way. If I could heal and recover him to a level of independence I would in an instant.
As a Dad Fighting for services it has been nothing but red tape and frustration. Since my time is short I will relate just two stories. First Autism is Still the only One of the 12 most common Mental disorders not covered by insurance nationally.
Second... The last thing Governor Blagojevich Did in office was to sign an Illinois Insurance reform bill to include medically proven therapies. Last summer I was challenged to ask Carle hospitals and therapy systems if they will now provide Applied Behavioral Analysis Known as ABA and Medically proven for 30 years. The response I got was they were cutting back on therapeutic services because of Budget and Could I bring in a brochure so they could learn about it.
This is like your cardiologist after a heart attack.. The patient saying I heard about this Stent procedure being effective and the Doctor saying bring in a brochure. FRUSTRATING.
For myself Being on the spectrum has caused me issues in multiple jobs and social situations. Again, Being on the spectrum, Coordinate care for Tanner, and going months without sleep has made it difficult to maintain a day job... But I will give anything a try if you hear of an opening... ( SMILES)!
Finally as a founder and director of Non Profits....
I think it is a sin the sporadic nature of services and support for families. Services vary by geographic region, socioeconomic status, and Ethnicity. I believe this is a crime. My vision and dream is to build an umbrella organization similar to United Way and Autism Speaks Both doing awesome heroic work. United Way with it's local 30 to 35 entities it supports and Autism Speaks with it's $65,000,000 annual budget in only six years does a great job with awareness and research. The gap as I have said comes in services.
Respectfully Sir... We know Autism is on your Radar... Promises were made in 2008. @Politifact says they have not been accomplished... That would be a starting point. We need help. TannersDad Tim Welsh
Posted by: TannersDad Tim | January 22, 2013 at 03:10 PM
Asthma.
They have asthma.
They are not untouched by this.
"Delaying DPT Vaccination May Reduce Incidence of Childhood Asthma"
http://www.medscape.org/viewarticle/572891
When President Obama was coming up in the ranks of his profession-- like all the rest of us - his daughter was very ill in the hospital. He dropped everything to be with his wife and child-
----just like my husband who also dropped everything to be his his daughter when she was in the hospital for Kawasakis.
And this they both have in common ~ their work place expected them to be a work ~ and said so.
And that is what they both did ~ went back to work to let the little woman deal with the illness.
Now asthma can be out grown and I hope that happens. But they also have a family history of MS.
Kawasakis however; has long range outcome of lipid metabolism (yes, beating a monontous tune here on that subject) but lipid metabolism has a lot of different outcomes including heart problmes, strokes - and nothing good.
And who is to say that asthma is not alos part of lipid metabolsim problems?
Posted by: Benedetta | January 22, 2013 at 01:59 PM
I wouldn't tell him anything. He already knows. He is owned by Big Pharma and Monsanto. He probably couldn't do anything to help our poisoned children even if he wanted to, which he clearly does not.
Posted by: Julie | January 22, 2013 at 08:46 AM
I would ask him what were the results of the committee to restore "integrity" in science that he formed a year ago?
In my humble opinion .. there is NO greater area in science that lacks "integrity" than the approved and recommended vaccine policies of the United States.
That statement includes the suspect "integrity" of the VACCINE COURT that routinely denies "science" presented by independent experts representing parents claiming their child was injured by vaccines .. as well as .. federal public health bureaucracies (FDA, CDC, HHS, etc) who blindly accept the "integrity" of the science produced by the pharmaceutical industry .. and .. the Vaccine Adverse Event Reporting System (VAERS) .. that lacks the "integrity" to confront the dismal failure of their passive "voluntary" reporting policies that have resulted in a vast number of adverse events going UNREPORTED.
Posted by: Bob Moffitt | January 22, 2013 at 06:43 AM