Aptos, CA psychologist: intermarriage by Islamic 1st cousins leads to children with serious defects

Who or what encourages Islamic fist cousins to marry?

In England, Islamic parents who are first cousins have horrific rates of serious birth defects. In England, it is hard to believe — but true — that one third (33%) of rare recessive gene defects are caused by a so few people (1.5 %). Is this Islamic culture or is it because of their laws?

See story below:

Tazeen Ahmad’s grandmother gave birth to six daughters and three sons. Five of the six daughters died and all three sons were born deaf. Why? Because of an unspoken tragedy which the Muslim world refuses to confront – intermarriage. Tazeen’s grandmother and grandfather were first cousins.

The consequences of intermarriage are that a disproportionate amount of children are born with massive birth defects. Tazeen Ahmad’s broadcast makes the case clearly: “..children of first cousins are ten times more likely to be born with recessive genetic disorders which can include infant mortality, deafness and blindness…British Pakistanis constitute 1.5 per cent of the population, yet a third of all children born in this country with rare recessive genetic diseases come from this community.” The cost of caring for children with birth defects is horrific, both emotionally and financially. Parents are reduced to prisoners in their own home caring night and day for their sick children; the strain doesn’t just affect the parents physically but emotionally. The most devastating thing in the world is to watch one’s children suffer. And the community in which these families live pays a high price as well – literally.

“On average, a children’s hospital will see 20 to 30 recessive gene disorders a decade, but one hospital in Bradford has seen 165, while British Pakistani children are three times more likely to have learning difficulties, with care costing about £75,000 a year per child.”

Yet, when Ahmad attempted to call attention to this horrific disaster, she met with a wall of resistance. Intermarriage is one of the tenets of Islam – ergo, to criticize intermarriage is to criticize Islam. And, as the Danish cartoonists discovered, that’s not such a good idea. When Ahmad approached 16 British MPs – all of whom had significant British Pakistani constituents – none of the MPs would go on the record. They were too afraid of the Muslim backlash. The Muslim community itself didn’t want to hear what she was saying – they also were afraid of offending the Muslim world by refusing to intermarry, even if it had bitter consequences for themselves as well as their children. Ahmad relates the all too typical tragedy of forced marriages. One young woman, “Zara” was blackmailed into intermarriage when her husband’s family in Pakistan “threatened suicide over loss of honour should she refuse to marry her cousin. She relented and lives in a deeply unhappy marriage.”

Nonetheless, Ahmad pressed on with the broadcast. She broke the wall of silence. It is hoped that her brave action will break the cycle of sick children. One can only hope.

http://www.dailymail.co.uk/health/article-1305078/TAZEEN-AHMAD-Three-uncles-deaf-Five-aunts-died-babies-Why-My-grandparents-cousins-married.html#ixzz0xkFWL0Ei

The greatest taboo: One woman lifts the lid on on the tragic genetic consequences of when first cousins marry
Sitting in the family living room, I watched tensely as my mother and her older brother signed furiously at each other. Although almost completely without sound, their row was high-octane, even vicious.
Three of my uncles were born deaf but they knew how to make themselves heard. Eventually, my uncle caved in and fondly put his arm around his sister.
My mum has always had a special place in her family because she was the first girl to live beyond childhood. Five of her sisters died as babies or toddlers. It was not until many years later that anyone worked out why so many children died and three boys were born deaf.
Today there is no doubt among us that this tragedy occurred because my grandparents were first cousins.
My grandmother’s heart was broken from losing so many daughters at such a young age. As a parent, I can’t imagine what she went through.
My family is not unique. In the UK more than 50 per cent of British Pakistanis marry their cousins – in Bradford that figure is 75 per cent – and across the country the practice is on the rise and also common among East African, Middle-Eastern and Bangladeshi communities.
Back when my grandparents were having children, the med­ical facts were not established. But today in Britain alone there are more than 70 scientific studies on the subject.
We know the children of first cousins are ten times more likely to be born with recessive genetic disorders which can include infant mortality, deafness and blindness.
We know British Pakistanis constitute 1.5 per cent of the population, yet a third of all children born in this country with rare recessive genetic diseases come from this community.
Despite overwhelming evidence, in the time I spent filming Dispatches: When Cousins Marry, I felt as if I was breaking a taboo rather than addressing a reality. Pakistanis have been marrying cousins for generations.
In South Asia the custom keeps family networks close and ensures assets remain in the family. In Britain, the aim can be to strengthen bonds with the subcontinent as cousins from abroad marry British partners.
Some told us they face extreme pressure to marry in this way. One young woman, ‘Zara’, said when she was 16 she was emotionally blackmailed by her husband’s family in Pakistan who threatened suicide over loss of honour should she refuse to marry her cousin.
She relented and lives in a deeply unhappy marriage. But others told me of the great benefits of first cousin marriage – love, support and understanding. To them, questioning it is an attack on the community or, worse, Islam.
At a Pakistani centre in Sheffield, one man said: ‘The community feels targeted, whether that be forced marriages or first-cousin marriages. The community is battening down its hatches, not wanting to engage.’
As a British Pakistani, I am aware of the religious, cultural and racial sensitivities around this issue and understand why people would be on the defensive when questioned about it.
At times I was torn between explaining the health risks while privately understanding the community’s sense of being demonised.
But I have also grown up in a family that has suffered the medical implications and strongly believe that people should have the choice to make an informed decision.
Throughout I had to remind myself that this is a health story – nothing more. It is not about religion or cultural identity. It is about avoidable suffering such at that experienced by Saeeda and Jalil Akhtar, whom I met in Bradford.
They are first cousins and have six children, three with the genetic disease mucolipidosis type IV. This stops the body getting rid of waste properly and affects brain functions controlling vision and movement.
Mohsin, their second eldest, is 17 and blind. He wanders aimless and helpless, often crying in frustration. His sisters Hina, 13, and Zainab, 11, have the same condition. They live in almost complete darkness.
Saeeda is worn down from years of round-the-clock care. She spoon-feeds them, dresses them and fears for them. Neither she nor her husband can quite accept that their familial link is the cause of this pain.
This is a major public health issue that has huge implications for other services. The cost to the NHS is many millions of pounds.
On average, a children’s hospital will see 20 to 30 recessive gene disorders a decade, but one hospital in Bradford has seen 165, while British Pakistani children are three times more likely to have learning difficulties, with care costing about £75,000 a year per child.
However during this investigation we found no efforts to introduce any national awareness-raising campaign. Why?
We approached 16 MPs with a significant number of British Pakistani constituents for interview – every one declined. We asked 30 MPs with a high population of British Pakistanis
in their seats to give their views in a short survey. Only one, who wanted to remain anonymous, responded, saying anyone who tried to talk about it risked being attacked politically.
A lone voice was Ann Cryer, former Labour MP for Keighley, near Bradford, who said ‘fear of being accused of racism or demonisation’ prevented politicians speaking up.
It is not just British Pakistani families who suffer. Wayne and Sonia Gibbs are white and first cousins once removed. They had no idea this could lead to problems. Their daughter Nicole had juvenile osteopetrosis, a genetic disease that causes the bones to thicken and crush the body’s organs. Nicole died aged two.
The couple now know both carry the recessive genes that caused Nicole’s illness. They wanted more children – but had genetic counselling first. They have two healthy boys today.
I have travelled nationwide, meeting doctors and families whose lives are full of pain. To me the solution is simple: Ring the alarm bells loud and clear.
In Birmingham, one GP practice has taken radical action. The doctors have campaigned heavily to stop cousin marriages. They have introduced genetic screening and testing for patients, starting at 16, and now claim that very few cousin marriages take place there.
My mother tells me that, long before I was born, her siblings and their cousins decided their tragedy would never recur.
The conclusion some will draw is that cousin marriages should be banned. I disagree. But people must be able to make informed choices about the risks involved and options available, be they genetic screening, counseling or carrier-testing.
At least there should be leaflets in doctors’ sur­geries and school campaigns.
Meeting the families in the program upset me greatly. Every day for them was an uphill struggle, mostly because their children needed so much help and this put enormous stress on their family lives.
Yet this was avoidable. If this were any other health issue, politicians would have been out in force. But they are silent and as a result children continue to be born with terrible, prevent­able disabilities that are devastating their lives and those of their loved ones.

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Parents Must Say NO to teacher union power in CA…

little red school houseIt has to be parents and community members — not teachers or school administrators — committed to quality education that make the changes in education that the schools need.

Only 1/6 (300 or 1800) local education agencies and only 1/3 of teachers unions backed the CA plan to win the Obama school reform competition. little red school house

The teachers and the unions that represent them did not get on board.

Well, throwing money at problems typically does not solve any problem. Look what Obama’s stimulus money did — no real stimulus. We got government pork-ulus not stimulus And the last “bail-out” that Obama said saved jobs for firemen and police? Nope. That “bailout” money is sewed up tight — for education and medicare. That which come out of Obama”s lips is not to be trusted it appears.

Teacher salaries and benefits have increased dramatically over the last 20 years. Teachers and unions do not say no, this is enough. And they never will.

Who should be at the table deciding teacher salaries?

At that table, every kid should have a representative — their parent. And parents need to coalesce in new ways. Use the Internet to come together as grass roots organizations. Create the equivalent of the Tea Party movement.

What might parents call school reform done by parents and community members not a part of the education establishment? How about Little Red School House … or Back to Basics …. or 180 FULL School Days a Year! the Three R’s … Performance Based Education …

So, visualize a simple red school house with Back to Basics underneath. Or, underneath the picture,e 3 R’s + M & A …. Reading, (W)riting, (A)righmetic ….some people may not know what the 3 R’s stands for!! And then in the picture there has to be some parents with with their kid in front of them….

Goals? Weaken the power of the unions. Reward teachers for performance. Make it possible to fire bad teachers. Get rid of top heavy administrations. Get lean and trim akin to how private schools manage.

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How stop gang violence? Public commitment by families and swoop up the guns! And sports….

What can get a handle on gang violence? Healthy, supervised activities is one avenue. Other avenues include individual commitments by the youth and parents made publicly and supported by the institutions that they respect — school, church, neighbors.

Churches, for example, have Graduation Recognition ceremonies. How about Initiation for Peaceful Solutions Ceremonies for youth starting by age 9 that are renewed once a year? And to bolster that public commitment by youth and parents blessed by priests and ministers create safe communities that are gun/knife/weapon free. Encourage parents to create ways to swoop up the guns and weapons that are on the streets and in the hands of children. And yes — structured activities such as soccer that encourage cooperation and healthy competition will enhance self esteem.

Below is how Live Oak, California is addressing the problem of gang violence. It is a start!!

A Volunteer Opportunity
A FREE 6 week indoor Soccer Program for youth ages 6 – 17 is being offered on Monday and Wednesday evenings from 6:00 – 9:00pm June 14th – July 21st. at Shoreline School in Live Oak. It is offered through a partnership between the Sheriff’s Activity League, the Live Oak Family Resource Center, Communities Organized for Relational Power in Action (COPA) and the Live Oak School District. VOLUNTEERS (adults and older teens) ARE NEEDED – coaches, refs, line refs, security, “team parent” etc. There will be a volunteer training on June 7th 6-8 pm. For more information call 476-7284 x 104.
Pre registration for players is June 3rd. Priority to youth living in the Live Oak School District but all kids accepted on a space available basis. Call same # to find out how to register There are many kids living in our community who cannot play soccer because their families cannot afford it. This program promotes self-esteem, teamwork and leadership skills while offering healthy activities in a safe space.

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Aptos, CA Psychologist: Excellent Resource Guide for Families in Santa Cruz County

An excellent guide to local resources is the Perinatal Resource Guide, Santa Cruz County 2010. It is developed and revised by Family Health Unit and Chronic Disease and Injury Prevention Unit, Health Services Agency. For more information call (831) 454-4331 or email nancy.diehl@health.co.santa-cruz.ca.us

To see how to use it, I put myself in the shoes of a parent who is concerned about possible developmental delays. But not exactly sure as to what kind of delay.

In the Index at the back Under Special Needs (Children With) is listed San Andreas Regional Center. In that same category are: California Children’s Services, Special Education Local Plan Agency (SELPA) and Special Parents Information Network (SPIN).

It would be helpful if San Andreas Regional Center was also cross listed under Children Services — where SPIN and CCS are also cross listed. Through the Early Start services many, many children with suspected delays receive services from age 0 to age three.

Another appropriate cross listing for San Andreas Regional Center is Parent Education/ Support Services. For over age two children who do not have a 50 percent delay in one area there is parent education and support through the Prevention Program.

Perhaps in the 2011 edition of Perinatal Resource Guide a new listing could be included: Internet resources and blogs that provide useful information for Santa Cruz County. On that list might be this blog — Monterey Bay Forum — http://www.FreedomOK.net which provides free screening for autism and discussion of local health and other issues.

written by Cameron Jackson, Ph.D., J.D. DrCameronJackson@gmail.com

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Aptos, CA psychologist: So is Applied Behavioral Analysis (ABA) the BEST method for treating autism?

Wake an autistic child for ABA treatment?

According to Dr. Bryna Seigel, for treating autism Applied Behavioral Analysis (ABA) IS the best method and it needs to be done from a developmental perspective.

That’s the problem. The ABA folks far too frequently do not use a developmental framework. Too often the ABA trainers do not use anything other than the one tool they know: stimulus – response. And far too often, ABA trainers do NOT know what is appropriate developmentally or culturally for that child.

The bottom line is that the ABA folks are narrowly trained and practise a narrow technique. It is good that they stay within the boundaries of their knowledge. Thank god for that! It is not good that they think that their method is the only way to go.

For example, too often ABA trainers will train the child during a time of day that typically the child naps. Does that make sense? Not from a developmental perspective. The ABA trainer’s response? We’ve got to get more INTENSITY says the trainer so let’s keep little Johnny up during his nap time.

And how much is enough? It’s NEVER enough say many ABA trainers. Dr. Siegel mentioned a 16 year old who has had ABA almost all his life. When is time to stop? His trainers don’t want to stop. From the ABA perspective, it is always possible to incrementally make progress. That may be true. But at what cost? And who should pay for it?

I’m thinking of a case of two children – twins — with mental retardation and autism. Neither could speak more than a handful of words, if that. Their parents wanted ABA to continue indefinitely although both had plateaued years before. Incremental progress meant maybe a little more shaping towards a sound over many 40 hour weeks. Should the taxpayers pay for this kind of incremental gain?

Dr Siegel was asked how she thought FloorTime proponents might comment on her view that ABA is the best method. Frankly, I don’t remember a clearly defined answer.

So what is the Holy Grail for treating autism? Remember the elephant and everyone holding on to a different part? So does the trunk you are holding feel like the elephant’s back? The truth that people have depends on their experience.

I understand that of course ABA can be implemented from a developmental perspective. In my experience, too often it is not done in either a developmentally or culturally sensitive manner. I am interested in seeing programs such as the Early Start Denver method — that uses both the FloorTime relational approach and the ABA approach.

Dr. Siegel spoke March 11, 2010 at the Developmental Disabilities: Update for Health Professionals at the Laurel Heights Conference Center, San Francisco, CA

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Aptos, CA psychologist: stories of courage and faith are all around us.

Diploma earned by CA youth with autism


There are stories of courage and faith all around us. This one is about a Catholic family with a special needs child. Recently, now age 18, I had the opportunity to assess their son.

This young person has substantial, multiple difficulties. To protect the family’s privacy, some information has been changed.

I will call their son Thomas. Not Thomas the Doubter but Thomas the Tenacious.

Early on, Thomas’ family knew that their middle child was very different. Though not a problem at home, he got kicked out of a private pre-school for behavior issues. By age four, assessment suggested that he had substantial communication and social delays. Other assessment suggested an array of delays.

In Kindergarten, Thomas’ parents turned down an SDC placement (more than 50% in special ed setting) and insisted on mainstreaming him. His family wanted and got a regular ed placement. He had an aide.

Assessment in second grade showed that Thomas had normal, average cognitive IQ abilities and quite low other abilities. However, thereafter when Thomas’ cognitive IQ abilities were tested his scores were in the bottom 5 out of 100.

“No, we are not going to use the mental retardation label,” the parents said to themselves and to professionals. To Thomas they said, “You can and will graduate from high school”.

The parents set the bar high for Thomas. The parents helped him every night at home and negotiated with the schools for support services to assist Thomas. At times he had an aide. He had Occupational Therapy and Speech services. Throughout high school he had RSP support.

Outside school, Thomas was able to complete religious classes and in high school was confirmed in his church. But he never had any friends.

“If Thomas misses 1 class it is as though he missed 3″ said his mother to me when I tried to set up an appointment to assess him. ” And absolutely don’t take him out of History …” And I did set up appointment times that did not conflict with any of his academic subjects.

And guess what — this June Thomas age 18 will graduate with a high school diploma. True — he has not been able to pass the California exit exams. However, he has completed all the work and taken all the necessary classes. Thomas has worked hard and long to get a diploma.

It has been a hard road for Thomas. It takes him 2-3 times as long to finish his homework compared to fellow students. Though he would like friends — he has no friends. And he cannot drive a car. And except for work experience through Special Education, he has had no part time jobs.

Thomas has a disability called Autistic Spectrum Disorder. It substantially affects his communication and social abilities. Sometimes he mumbles and sometimes he nearly shuts down in his abilities to communicate with people.

When assessing Thomas, one thing shined through — Thomas has sold, normal, average cognitive intelligence. That Thomas has normal, average intelligence is a real strength that will help him in all of life’s situations.

All of us have strengths and relative weaknesses. Thomas has strong intelligence and incredible tenacity. Once he knows what to do and how to do it, he persists and keeps on trying until the task is done. And that willingness to persist and keep on trying was passed along to Thomas by the faith and courage of his parents.

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Aptos, California psychologist: Why not “sell” health care like cell phones? Educate people and give choices! Let people decide.

Seems, concerning health care, that the Obama government does not trust people to figure out what they need. I say trust people to figure out what health care they need AFTER they have information and choice. And WHEN they know that they have the power to make decisions that affect their pocket book.

Let people decide the same way they do when they purchase a cell phone.

Here is an example:

I needed to buy a cell phone as my dog ate my Blackberry. So I am out shopping to see what is now available.

Today, the cell phone stores are crowded in Watsonville, California. I take a look at both AT&T and Verizon. Many families go out Sunday afternoon to “shop” for cell phones. It is free entertainment. There are lots of hands on demos. People can try out the merchandise. They can ask questions. Plenty of people are there to assist and answer questions. And it does not cost a dime until the person signs a contract.

Why not use the same method to “sell” health care? Have “stores” where various options can compete and hawk their merchandise. Have different price health plans advertised.

Over here is the “beginning basic” health care plan — for a healthy young couple with no known health problems. And over there is the model for a family with two children and one more child on the way. And farther over there is a medical plan for the 50 year old couple with chronic health care problems.

Yes, information and choice are what Americans need to make good health care decisions for their families.

Obama Health Care makes for bigger government. A bigger government where people have less choice over their lives. So I say, oppose Omama Health Care.

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Heal autism? A lot of the symptoms can clear …Here’s one story…

This is a true story with some information changed to protect privacy.

The boy, I will call him Mark, is nearly seven years old. He was diagnosed with Autistic Disorder a year ago.

The diagnosis was given after a thorough assessment by a licensed California psychologist up in the Bay Area. Mark and his parents live in the Monterey Bay area. Mark goes to a public school kindergarten.

In the course of just one year, Mark’s functional abilities have improved considerably. He no longer meets criteria for a diagnosis of Autistic Disorder.

Since the diagnosis , Father, a computer type, now spends much more time engaged with Mark has an Individual Education Plan (IEP) which provides a full time aide and public school speech services. Mother also takes him to private social learning classes and to horseback riding classes for children with disabilities. And there is a normally developing same age boy who lives close. The parents put in an outside hot tub and child oriented playground to encourage other children to come visit.

Of note: There was no Applied Behavioral Analysis (ABA) services in place. Mother appears to use a soft, developmentally oriented approach. And it IS working! So, YES, children can dramatically improve in one year. Instead of having 6 out of 9 functional areas quite low, now there are only three. What more improvements will happen over the next year? I expect more great, positive changes ….
written by Cameron Jackson DrCameronJackson@gmail.com

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Who should get in to PCS in Santa Cruz? NO to the children of public school teachers!

A lottery was used to select which students get in to PCC in Santa Cruz, CA — one of the best schools in the nation.

Which students should be denied? Those teachers who collectively through their unions have made the mess public schools are in should be denied access of thier children to PCC. Continue reading “Who should get in to PCS in Santa Cruz? NO to the children of public school teachers!”

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Aptos psychologist: great resource to publish on autism using Word Press at Dance Marathon, Univ. of Michigan

Dance Marathon is a student run blog, a great web site where anyone can publish articles on autism and many other subjects using Word Press. Continue reading “Aptos psychologist: great resource to publish on autism using Word Press at Dance Marathon, Univ. of Michigan”

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