VOR 2014 Annual Conference, Legislative Briefing and Dinner Event

Making it Happen: Reforming Policy and Law in Support of Person-Centered Quality and Choice

Have you registered yet? 

When Sunday, June 8, 2014 arrives we hope you will be by our side. Great speakers have been confirmed and include attorney Bill Choslovsky, advocate and author Kim Stagliano, and Kathy Brown, President of the Developmental Disabilities Nurses Association.  

VOR’s Washington Initiative, which includes Congressional visits, will occur the week of June 9, 2014.  For more information, including registration opportunities, visit VOR’s website.

What are you waiting for?

 Here is an online registration form.

 If you prefer to respond by mail, here is a print form with conference details and registration form to mail.
From our sponsor: VOR

VOR 2014 Annual Conference and Initiative

"Keep up the good work! I found this Conference to be very educational and encouraging! Thanks for all you do!" ~ 2013 Conference Participant

By Abdulkadir Khalif

I am writing a response and a rebuttal to Maura Lerner’s story of 03/17/2011, (HERE) concerning Measles and unvaccinated Somali Kids in Minneapolis. This story, like so many others before it on this newspaper and others across the country, highlights the issue of autism and Somali kids. There is an increasing sense of desperation in medical circles and the media concerning the causes of autism and how to delink it to vaccinations. It is the wish of every parent in this country and around the world that causes and cures of autism are found quickly, and hopefully without forgoing the benefits of vaccines. I am a Somali parent, resident in Minneapolis and a father of a 6-year old boy who is severely affected by autism. He is still non-verbal and horribly dysfunctional.

As a parent, I am desperately looking for answers from my son’s doctors. I am looking for a cure for my son’s conditions, or at least a treatment regime that would make him function as a human being and hopefully live an independent life once we are gone. I am not finding hope anywhere and obviously no answers for my many questions. Our doctors and scientists agree on a few things:

• That they have no idea what causes autism.
• That there is no known cure for autism.
• That autism is a life-long condition for which there is no hope.
• That behavioural therapy if administered early, consistently and over a long period of time may give some good results.
• That vaccine and especially the suspect MMR is perfectly safe for all kids irrespective of their genes, diets, background and lifestyles.
• That the rate of autism is increasing every year all over the world.
• That autism has always been around and better diagnoses is giving it the attention it is getting now.
• That some research has shown that some communities are more vulnerable than others.
• That more research is needed to disprove earlier research.
• That there is no money for autism causation research.
• That they are still too ignorant about what autism is, and that instead of admitting that they would rather just deny its prevalence, rise etc.

To me that sounds like a bunch of contradictions. It is sad that we have to trust our lives and that of our kids to a few technocrats and uncertain scientists who are voting with their pockets instead of their guts.

I have a gut feeling (trust your gut feelings always) that my son was affected by what got into his body around the time he was 18 months. My son grew up a normal, healthy and bouncing baby. He started speaking a few words by the time he was about 15 months. He waited for me at the door everyday as I got back home from work and welcomed me inside. He knew how I opened the door and the approximate time I came home each day. He raced down the stairs and hugged me, then held my hand and led me inside. I looked forward to those moments and they were perfect moments as they relieved me of the day’s tensions and small workplace frustrations. Then one day, I came home and he did not welcome me as was his wont.

A few days earlier, Abdimalik got his 18 months MMR vaccine as scheduled. I still remember that day. His mother was coming back from his appointment and passed my place of work to give me a ride home. Abdimalik was sitting in his car-seat, very quite, subdued and absent minded. As I took my seat I glanced back wondering if he was asleep or not. He was seated squarely in his seat but was looking straight ahead at a point in space. I called out to him and he did not respond. I shook him and he did not move. I looked at my wife and asked what happened and she explained where they came from and that everything went well. She explained how he thanked the nurse as she put a sticker on his chest before the injection in order to build rapport. After that we rode home in silence and life was never the same again.

By Abdulkadir Khalif

Long years ago a cousin of mine purchased a house in a subdivision in Nairobi and was upset to find that his title documents showed a parcel that was completely different from what he was shown on the ground. He asked me to check it up and true to his suspicion the facts on the ground did not agree with the documents. To be sure and because of possible litigation in the pipeline I searched for all relevant maps and monuments in the vicinity and carried out all necessary measurements in order to build up an air-tight case. My cousin went to court. The defendants were his neighbor who had encroached on his land and the developer who sold him something different.

My cousin’s attorney crossed examined me in court and displayed all relevant evidences to show our case. The proof was beyond doubt and the other side was desperate to stop us. They refused to accept the plans and maps we brought to court. They insisted the court uses theirs. We had no reason to refuse it because we were confident of our position. The judge had a fixed smile on his face as our opponents struggled and sweated. They asked for an adjournment and we said OK. Come the afternoon session and they had something interesting to say: That I was not licensed to practice land surveying in Kenya and I am therefore a fraud and a cheat, and that my evidence should be thrown out. The judge knew better since he could see that we had a great case and that it was the other side that deserved those names. They lost and we won. My cousin got back all that he paid for. I have since been licensed to practice land surveying in Kenya.

Sorry to bore you with this but I see a similar situation in the struggle the US and UK medical establishment is waging against our hero Dr. Andrew Wakefield. I will also bring to your attention the story on MPR (Minnesota Public Radio) titled: “Controversial Autism Researcher tells local Somalis disease is solvable”, by Rupa Shenoy and dated December 17, 2010. (HERE)

Dr. Andrew Wakefield had a license in the UK and could have got one easily in the USA if he did not cross paths with the pharmaceutical industry and their medical cronies. He lost his license in the UK not because he failed any scientific test but because he pioneered true science that did not immediately bring in a flood of money. He chose to be on the side of truth and our children instead of being on the side of big business. He is compassionate enough to come to the Somali families in Minnesota and to give them hope that may be; just may be, there could be a possible cure for autism if the obvious cluster in Minnesota is investigated properly and by people with scientific integrity and human hearts, and who are not looking back over their shoulders in fear.

By Abdulkadir Khalif

As Quresha and I prepared for the short flight to Chicago from Minneapolis for Autism One Conference on the evening of 05/19/2009, I was not sure what to expect and how events would fold out for the next few days. I was mostly quiet worrying about the other members of the Minneapolis Somali parents many of who would join us the following day, and the other large delegation from Toronto Canada who would have fewer problems because they have been to Autism One conference many times before. I spoke with all of them before flying out just to make sure all was well. This being my first Autism One Conference means that I have to be in my best elements, especially when so many people are relying on me. The Northwest flight landed on time at O’Hare International Airport and our transit to baggage claim was easy. Ten minutes later we were on the shuttle to Marriott Suites O’Hare. The check-in there was quick and easy too, thanks to the efficient arrangements by Teri Arranga (thank you Teri). We will be forever grateful to her and JB Handly for making it possible for so many of us from Minnesota, Ohio, California and Toronto to attend this years’ conference. The rest is up to us.  

Managing Editor's Note: Our contributing editor in Minnesota, Abdulkadir Khalif organized a toy drive for children with autism with Totally Kids. We first told you about it HERE. Below is the letter from Jesse Dumas of Totally Kids about the event's success. You can meet Abdulkadir on Saturday at our Age of Autism presentation at Autism One.

Dear Friends,

Recently my company, Totally Kids, partnered with Abdulkadir Khalif and Parents United Against Autism for an Earth Day Toy Recycling Drive with the intent of taking in toys that could be redistributed to families in need affected by autism.   On every conceivable level, it was a tremendous success.  

As a newcomer to the autism battlefront, my business and I had no idea what to expect in terms of response to our little campaign, but thanks largely to the support of Abdulkadir, the PAA, and the readers of this site, we were treated to meeting many parent-warriors that came and spent some time with us. Admittedly, the scope of the campaign was rather small, and in trying to get publicity, we realized just how difficult it was to capture people’s attention.  But in seeing the support that the families give one another, we realized that we had become a part of something very special, albeit much bigger than us.  It absolutely warmed the hearts of my colleagues and I to see the donation box fill up day after day and eventually be taken off by Mr. Khalif to deliver to the children who can use them.   Thank you a million times over to all of you who donated, to all of you who spread the word, and to all of you who are a part of making this problem visible to the ones who need to see.

Managing Editor's Note: Read "Ghana, disability law leaves out autistic children" from AllAfrica.com HERE.  Abdulkadir Khalif adds perspective to the state of autism in Africa.

By Abdulkadir Khalif

Ghana is a West African country neighboring Nigeria. It was a British colony until 1956 when it became the first sub-Saharan African country to attain independence from colonialism. The only other Black African countries which were free at that time were Liberia in West Africa and Ethiopia in the east. Together, those three countries encouraged and finally succeeded in freeing the rest of Africa. Ghana has had a turbulent history starting from time when its first president Kwame Nkurumah was overthrown by a military junta that ruled Ghana until very recently. Ghana has produced very prominent politicians and statesmen, the most famous of whom is Kofi Annan the last Secretary General of the United Nations.  

Ghanaians are among the most educated Africans today, and Ghana as a country is considered by many to be a shining example in economic stability, political maturity and as a leader in intra-African affairs. It is also amongst the least corrupt in West Africa maybe because unlike Nigeria it has not been devastated by oil exploration and exploitation and thus escaped all the corruption that goes with such economic trends. Today Ghana is an island of peace in a turbulent region of Africa.

Ghana’s peace and development brought with it all the “perks” that come with that status. It has a sophisticated physical infrastructure and academic institutions it can be proud of. Ghana is self-reliant in food and is the home for the beverage called cocoa. Earlier in its history, Ghana’s children were devastated by a disease called kwashakor. The people of Ghana described it as “the disease the old baby gets when a new baby is born.” Scientists have since given it a new name – malnutrition.

I am not surprised that autism is in Ghana.

Click HERE to shop Totally Kids!

What: Earth Day Toy Recycling
When: April 22nd.
Where Totally Kids Fun Furniture and Toys 7876 Portland Ave. S. Bloomington, MN 55420
Why: To benefit the environment and families affected by autism.

Recycling is not just limited to items made of plastic, paper, and glass.  Thousands of products, including toys, are thrown out every year that are still valuable to many people.  This Earth Day, families are encouraged to donate their gently used and new toys to be “recycled” to families in need.  Most notably, going to families affected by autism, a growing segment of the population particularly in our immigrant Somali community.  The event is being coordinated by the staff at Totally Kids fun furniture & toys in Bloomington, and the toys will be donated to the locally headquartered non-profit organization Parents United Against Autism (PAA). 

Managing Editor's Note: Our new contributing editor Abdulkadir Khalif is indeed a Father Warrior. Through his work with Parents United Against Autism, he has enlisted a local MN business to create an Earth Day Promotion. Read this letter from the Marketing Director for Totally Kids, a furniture and toy store in Bloomington, MN. Any chance we can raise enough money to send Mr. Dumas to medical school?  You can email Mr. Dumas HERE.  Better yet, check out the Totally Kids site HERE.

It would seem we are in the midst of a formative time for the fight against autism.  The Minneapolis/St. Paul metro area is a significant battleground and with the recent “discovery” of the high prevalence of autism in the immigrant Somali community, the tide could be turning, but only if we take initiative.  

I’m the newly hired marketing director for a children’s toy and furniture store in Bloomington called Totally Kids, and one thing I was made aware of immediately was that we get a steady, if not frequent, stream of parents coming to find toys and furniture that help their autistic child.  Since my arrival, it’s become a focus of ours to declare the company as both a provider and advocate for parents and children of the autistic community and to get involved in a way in which we can make an impact.

By Tim Kasemodel
 
The Minnesota Somali autism study released on March 31st 2009 has created quite a stir, but not as much as it should.  It creates a certain enigma, a conundrum of sorts.  While it attempts to assure the Somali community that the Minnesota Department of Health cares for them and wishes the best for them, it gives them no answers to the questions they have been asking them for so long.

Why?  Why us? they ask.  Yes, the MDH admits the Somali community was right, that their observations were correct.  It appears there are indeed more Somali children receiving autism services than other children.  But the MDH makes the strange disclaimer that the data they used for this study is not actually good enough to say for sure one way or the other.

What?  How much did the taxpayer spend on this study?

Managing Editor's Note: We are pleased to welcome Abdulkadir Khalif as our newest Contributing Editor.

By: Abdulkadir Khalif

On the last day of March 2009, the Minnesota Department of Health finally produced a report on the prevalence of autism in the Somali immigrant population of Minneapolis, Minnesota. It was obvious from the numbers that the issue of prevalence has finally been settled, and that there definitely is a cluster of autism in Minneapolis. The MDH arrived at these conclusions not from their own investigations but from that of the MN department of Education. These are the very numbers that the MDH initially doubted and which the CDC poured cold water on towards the end of last year. I would like to take this opportunity to congratulate and thank the MN Department of Education for leading the way in the fight against autism in Minneapolis and for showing, on their own, that they (the teachers) know better than the healthcare professionals that autism has a cluster in Minneapolis, especially amongst the people of Somali ethnic group. I hope that the MDH together with the CDC will now come down from the ivory tower and start planning on how to confront this epidemic.
 (This is Abdimalik Khalif.)