freedoms, healing & stories in the news
Here’s a list of  what NOT to do when seeking services for a child with substantial delays such as autism or intellectual disability.
The family  first went to  an  M.D.  who made recommendations that a handful of evaluations be done & then  to come back to discuss the results.  The parents  did not follow through on any of the MD’s  recommendations concerning assessment.
Instead, the parents went to a CA Â agency that provides services to children with developmental disabilities. Â There, the parents:
Hoist by they own petard! Â One thing lead to another and the end result was that the parents did not get the diagnosis they expected. Â So they they tried to change the diagnosis through a complaint process. And that did not work.
The parents feel “stuck” with a diagnosis they do not agree with. Shown the support for the diagnosis they still want to reject it. And the parents state that they feel that the process was a painful one. Â Well, the actions they took (see above bullets) resulted in effects they did not expect.
In my view, just as water seeks its own level, many children with disabilities are more comfortable educated with children who share similar  abilities.  I hope that this child does get an IEP and can have connections with children who share similar abilities and interests.
Cameron Jackson, Ph.D. Â Â DrCameronJackson@gmail.com
Dr Jackson is a psychologist with a private practice in Santa Cruz, CA Â 831 688 6002
Children with developmental delays frequently do not graduate from high school.
One private school in Santa Cruz, CA which serves largely children with autism is the Bay School.  Per report by a parent, there is no graduation ceremony at the Bay School  when students finish their Senior year.Â
So, what to do if a student with developmental delays wants to celebrate completion of high school but there is no ceremony or ritual?
Clearly, here’s an opportunity to innovate. Â
Make up a ceremony that will be meaningful for your child with delays. Each child is unique so the best person to decide are the parents and family and friends who support this young person leaving high school behind.Â
Do you know a child with developmental delays? Find out their birthday and the date that they will formally  finish their Senior year.
Send a card and/or a small gift. Make a phone call. And you might include a fresh flower or two for the parent(s) who has taken this long journey with their child soon to be a grown up. Â Below is a post by an MD on the same topic.Â
licensed psychologist DrCameronJackson@gmail.com
http://blogs.einstein.yu.edu/celebrating-milestones-for-the-developmentally-disabled/
Times have changed. In the last 5+ years,  a diagnosis of Autism is sought after as a diagnosis particularly if the other diagnosis  to rule in or out is Intellectual Disability formerly Mental Retardation.Â
See the post below wherein the MD is haunted by a diagnosis of mild Autism which she made 20 years ago.  Perhaps if  that MD had suggested what treatments could be offered for mild Autism  and typical progress made through social skills training, then perhaps the parents might have returned on their own for follow up appointments.
Twenty years ago we did not have internet. Now, it’s possible to get e-mails and immediately set up a connection with parents so as to address their concerns.
Recently, I diagnosed a 13 year old boy with Intellectual Disability, Unspecified. My guess is that he has Moderate ID, i.e., an I.Q around 40-50.   When the parents were interviewed they said that they  wanted  a diagnosis of Autism.  Later, at another meeting they  entirely rejected a  diagnosis of Intellectual Disability.  Because Intellectual Disability affects all areas of general functioning whereas Autism is more limited it will not take 20 years to see which diagnosis is more accurate.  The politics of this diagnosis still reverberates.  Parents want any mention of Intellectual Disability stricken from our records. Politics involved?  Yes!!
DrCameronJackson@gmail.com
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Haunted by an autism diagnosis: A sense of closure after 20 years
LISA SHULMAN, MDÂ |Â CONDITIONSÂ |Â JULY 27, 2013
It was my first parent conference ever. I had watched an experienced social worker give a series of diagnoses to a family and now—following the “see one, do one†model—it would be my turn. Things started off well. When I reviewed the cognitive and language data, the parents were attentive and the mother’s nods indicated that the information was consistent with her own thoughts about her son. When I moved on to discuss the constellation of behaviors that included poor eye contact, conversational weaknesses and restricted interests and suggested that they might be manifestations of mild autism, the mother vehemently stated her disagreement. She said that she “had seen autism and this was not it.â€
The family never returned for the scheduled follow-up appointments. I had no information about what had become of the boy. But I thought of him over the years; he haunted me. I went on to develop a clinical and research passion for autism and to head the RELATE program for early diagnosis and treatment of autism here at Einstein. The field of autism changed in the background, with the concept of the spectrum of autism becoming widely accepted. But I wondered through the years if, in my clinical debut, I had jumped the diagnostic gun. Had I given these parents an incorrect diagnosis for their son—one with lifelong implications? The case haunted me as I wondered whatever became of the boy and his family.
I looked back at the old chart and the release of records form and found that there was another sticky note affixed to the record. It said that the patient was currently being seen on the adult unit, and those recent records were also attached. I excitedly flipped through the pages to find the new report. The record began: “The client is a 29-year-old male who reports that he was diagnosed with mild autism as a child, that he completed high school, went on to college but could not manage it and dropped out and has been unable to hold a job since due to social difficulties. He comes seeking treatment.†The report goes on to describe his poor eye contact, trouble with topic maintenance and trouble understanding the examiner’s perspective. It was clear, based on the recent evaluation and current attitudes and criteria, that the patient has an autism spectrum disorder.
From a selfish perspective, this follow-up—more than 20 years later—gave me a sense of closure. The long-ago diagnosis had been accepted, at least by the young man himself, and he continues to show signs of this generally lifelong diagnosis. But I ached to know the course his family had taken in accepting the diagnosis and what help he had received along the way. Could he have done better and succeeded in his education and work activities if he had received more specialized help, such as social skills training—readily available these days but hard to find in the 90s? I don’t think the case will haunt me in the same way it had. Maybe in some new ways, though, it will.
Lisa Shulman is a neurodevelopmental pediatrician and director, infant and toddler services, Children’s Evaluation and Rehabilitation Center (CERC), Albert Einstein College of Medicine. She blogs at The Doctor’s Tablet.
How parents can  lessen or  prevent AUTISM symptoms in young children: Â
Before birth:Â
After birth:Â
Get help:
What to know: The variations in normal development are immense.
Information about  the development of your child is vital:  Do keep track of your child’s development with smart phone cameras and old fashioned baby books.  Write down: age child first smiles? age child starts to kick arms and legs to get your attention? age child turns head towards you when you say his or her name?
Well Baby Checks: Write out a list of any concerns you have and take that list when you talk to you MD. Â There are excellent check lists MDs can have you fill out concerning the issues that may suggest delays in social and communication development.
Seek early help:  There are twenty plus Regional Centers in California which  provide assistance for  young children  with developmental delays.  Parents can self refer or they can have their MD refer the child.  No diagnosis is necessary to get excellent assistance to assist your child’s development in the 0 to 3 age period.
This is just to get you going. Â There are lots of books out there. If you have questions or comments sent them to: Â Â DrCameronJackson@gmail.comÂ
Dr. Jackson is a licensed California psychologist. She is employed part time for one of California’s regional centers. Dr. Jackson assesses children and adults and provides short-term therapy. Dr. Jackson has expertise in autism and other developmental delays. You can find additional information about Dr. Jackson on Monterey Bay Forum www.FreedomOK.net and on the Psychology Today website. Â She may be contacted at P.O.Box 1972, Aptos, CA 95003 Â 831 688-6002
Helping kids with  Autistic Spectrum Disorder (ASD)  connect with animals helps kids connect in general  with people.  This makes sense for regularly developing children. And  it also makes sense for children with developmental delays.
See article below from Medical News.
“Animals help children with autism spectrum disorders (ASD) interact better; they show increased positive social behaviors when an animal is present.
The finding came from a new study by researchers, led by Marguerite E O’Haire, from the University of Queesland, Australia and was published in the journal PLOS ONE.
Kids between the ages of five and thirteen with ASD were involved in the investigation. The experts analyzed their interaction with adults and with peers who were developing normally, while two guinea pigs were present. The interactions were compared a second time with toys instead of the guinea pigs.
According to the results, when the animals were present, the kids with ASD displayed more social behaviors such as:
Compared to when they were playing with toys, the kids with ASD were more receptive to social advances from their peers when the animals were in sight.
The children laughed and smiled more when the animals were present compared to the toys, and also reduced behaviors of:
Prior research has indicated that people have a higher probability of receiving overtures of friendship from strangers when taking a dog for a walk as opposed to when they walk unaccompanied.
Comparable outcomes have also been examined for individuals who have smaller animals, such as rabbits or turtles with them.
This ‘social lubricant’ effect of animals on human social interactions may be especially critical for people with socio-emotional disabilities, according to the researchers.
The capability of the animals to assist boys and girls with ASD communicate with adults may also be used to help them interact with teachers, therapists, and other adults in their life.
Animal-assisted interventions may also benefit the classroom dynamics as well, the scientists said.
The authors concluded:
“For children with ASD, the school classroom can be a stressful and overwhelming environment due to social challenges and peer victimization. If an animal can reduce this stress or artificially change children’s perception of the classroom and its occupants, then a child with ASD may feel more at ease and open to social approach behaviors.”
There have been several studies over the last week on ASDs. One published in BMC Medicinedemonstrated that autistic kids have a structural difference in brain connections than those without the disorder, while another found that five major psychiatric disorders, including autism spectrum disorders, share genetic links.
Written by Sarah Glynn
Co
How to potty train children with autism and other developmental disabilities go to http://www.avakid.com
“This unique potty training app provides a simple menu to create a cartoon avatar that physically resembles your child/children, and then enables your child to repeatedly play the Go Potty narrative showing him/herself successfully complete the whole process of using the potty step by step. There is also an accident scene. The layout is intentionally simple and free of distractions so your child’s attention will be focused on him/herself using the potty. The app includes 15 actionable potty training tips including concrete advice about preparation, behavioral reinforcement, behavioral shaping, when to continue vs. take a break, and more.”
Information on this potty app was found on Autism Speaks:
http://www.autismspeaks.org/family-services/autism-apps
Autism Speaks is a great resource for families with children with autism.
DrCameronJackson@gmail.com
Intriguing as a possible early sign of autism: Lag in motor development (control of head and neck) found in infants who are more likely to develop autism. This study needs to be replicated before the public puts much weight on this finding.
This is a simple test that any mother can do at home. Any suspected delays can lead to early intervention by Early Start services. Parents who suspect motor delays can seek assistance from the Early Start program funded by the federal government.
“Typically, red flags that might lead to an autism diagnosis are issues with social and communicative traits, such as avoiding eye contact or not playing with others. But Dr. Rebecca Landa, the study’s author and director of the Center for Autism and Related Disorders at Kennedy Krieger Institute in Baltimore, says certain disruptions in a child’s motor development may provide important clues.
“For the study, researchers assessed infants in a simple “pull-to-sit” task that measures posture control by firmly – yet carefully – pulling a child’s arms from a position of lying flat on his/her side back into a sitting position (as seen in the videos below). Typically infants achieve this type of posture control by the time they are four months old.
“In one experiment, researchers gave this task to 40 infants who were considered to be genetically high-risk for the disorder because a sibling has autism. They researchers were looking specifically at “head lag” – the inability to control head posture – at 6, 14, 24 and 30 months of age.
“The researchers found 90 percent of subjects eventually diagnosed with autism exhibited head lags as infants, and 54 percent of kids who met social and communication delays criteria exhibited head lag, while 35 percent of children who did not meet that criteria exhibited the lag.
“In a second experiment, Landa and her team examined only six month olds at a single point in time to check for head lag, and found 75 percent of the high risk infants displayed head lag compared with 33 percent of low-risk infants, further emphasizing that head lag is more common in infants that may develop autism.
Landa’s study is to be presented at the International Meeting for Autism Research on May 17 in Toronto.
“While previous research shows that motor impairments are linked to social and communication deficits in older children with autism, the field is just starting to examine this in younger children,” she said in an Institute news release. “Our initial research suggests that motor delays may have an important impact on child development.”
“If some parents try the test at home and are worried, Landa emphasized to The Baltimore Sun that a head lag at six months does not mean a child is definitely going to have autism, but rather is a potential sign that a pediatrician should explore further. http://www.baltimoresun.com/health/blog/bal-poh-autism-test-for-infants,0,1502094.story
“We don’t want to scare parents,” she said. “If I go to the doctor because I’m having problems with balance, he’s not going to assume I have a brain tumor. When a baby shows a head lag there are so many other things it can be. But this is a very real indicator of something wrong with development and easy things can be done to help.”
Dr. Alycia Halladay, director of environmental research for the advocacy and research group Autism Speaks, told WebMD that the findings are “intriguing” but a head lag’s diagnostic value remains uncertain.
“The first step is to replicate these outcomes in larger studies in multiple sites,” she said.
The study adds to recent research aimed at diagnosing autism at an early age. A recent study found differences in nerve connections seen in infants’ brain scans might signal autism, CBS News medical correspondent Dr. Jon LaPook reported.
About 1 in 88 children has autism, according to recent government estimates.
Let’s take the wind out of sails of the SEIU?
How? Through state legislation, stop automatic deductions of union dues from SEIU workers pay checks.
Let workers be free to choose yes or no whether to pay union dues. Many government union workers will opt out of automatic dues removed from their checks. No automatic dues flowing into the SEIU results in less political clout that they can exert.
Why should any worker just to hold a job have to pay SEIU union dues so that the SEIU can use dues to flow into other organizations like Change to Win which seeks to intimidate private companies such as Wellpoint from making political contributions?
Look at who runs Change to Win. The President of SEIU, the Vice President of the SEIU and the Treasurer/Secretary of the SEIU are all key players of Change to Win.
Union front organization such as Change to Win seek to know and limit the political donations made by private corporations. Why? So that the unions are the only big players in who make large donations.
The unions such as SEIU want to control the political free speech exercised by of private corporations.
The SEIU seeks to grow government unions to grow their power.
Recently, in Michigan the SEIU suffered a setback to their political clout. In states including Michigan and California home health care workers were forced to pay union dues.
Persons with developmental disabilities are frequently cared for life long by family members.
It is good news that developmentally disabled persons can stay in their homes thanks to health care provided by parents and relatives. Those who best know and love a relative with disabilities provides care at a fraction of the cost if the person had to be placed in a government run facility.
To deem home health care workers as “government employees” and force them to pay SEIU union wrongfully categorizes people and allows the SEIU to skim off millions of dollars. Home health care workers seek to care for their loved ones — not to do a government job. Recently Michigan has changed their laws. No more taking of union dues from Michigan home health care workers.
Can California wake up and follow Michigan’s lead? Let’s hope so. The necessary labor and employment laws are already in place to protect jobs.
written by drcameronjackson@gmail.com
By: Chase Ingersoll
Home Health Care Aides not longer required to pay SEIU union dues
Posted: Apr 11, 2012
MIDLAND — Michigan’s 60,000 home health care aides will no longer be deemed government employees — meaning they cannot be forced into a government employee union and have dues withheld — as a result of legislation signed today by Gov. Rick Snyder. The next step is for the Michigan Department of Community Health to immediately stop the collection of dues from subsidy payments intended to assist developmentally disabled adults and the diversion of those funds to the Service Employees International Union, said Patrick J. Wright, director of the Mackinac Center Legal Foundation.
“Ending this lucrative charade is terrific news for Michigan’s home health care providers who have seen nearly $30 million skimmed from their payments over the last six years,†said Wright. “The designation of these private contractors and family members as government employees was illegal from the beginning. Michigan’s Constitution explicitly states that only the Legislature can define government employees. No political arrangement or interlocal agreement can change that.
“Now that the law has been clarified, the dues skim must end,†he added.
The arrangement that allowed the SEIU to skim from Medicaid payments to some of the state’s most vulnerable residents was concocted during the administration of Gov. Jennifer Granholm. An interlocal agreement between DCH and the Tri-County Aging Consortium allowed for the creation of the Michigan Quality Community Care Council, which served as the “employer†for what were really self-employed independent contractors or, overwhelmingly, family members caring for loved ones.
Despite the fact that there was no real employer with whom to engage in collective bargaining, the SEIU conducted a union representation vote in 2007. Out of the 44,000 home health care providers in Michigan at the time, only 7,900 voted; 6,900 cast ballots for the union. Although many providers were unaware that a vote was taking place, they nonetheless were forced into the union.
Government-sector unions recently proposed a constitutional amendment to circumvent this legislative fix and restore the flow of the so-called dues. Wright noted that if passed, this proposed amendment would violate the U.S. Constitution since private employee unionization is purely a matter of federal law.
This is the third time in 14 months that an illegal unionization arrangement has been brought to an end. On March 1, 2011, Gov. Snyder issued an executive order ending the illegal dues confiscation affecting tens of thousands of home-based day care providers who had been forced into a government-employee union through a similar scheme. The Mackinac Center Legal Foundation fought an 18-month court battle on behalf of day care owners.
On March 13, Gov. Snyder signed into law a bill clarifying that graduate student research assistants are not government employees subject to forced unionization. The MCLFrepresented more than 370 such students from the University of Michigan who objected to the illegal unionization effort.
“Government-sector unions are clearly trying to expand the definition of government employees in order to grow their membership and direct taxpayer money into their coffers,†said Wright. “If business owners, the self-employed, family members and students can be roped into such schemes, then grocers, doctors, landlords and anyone else who receives a direct or indirect payment from the government can’t be far behind.â€
Hearing loss in babies has huge effects on their general development: hearing loss impacts language acquisition, speech, psycho-social well being and overall learning.
Research shows that the critical time to stimulate the auditory and brain pathways is during the first six (6) months of your child’s life. So pay particular attention during your child’s first six months that he or she continues to hear normally.
The good news is that children with all degrees of hearing loss — who receive appropriate interventions prior to 6 months of age– can obtain speech and language skills comparable to their normal hearing peers when age 3 years.
What parents can do:
Check and re-check that your baby’s hearing remains normal. Visit your pediatrician for screenings as your doctor recommends. Research recommends hearing screening every 2 months until age one year — and every three months until age two.
Keep this in mind:
Even mild hearing loss can significantly interfere with the reception of spoken language and educational performance. Research shows that children with one ear hearing loss are ten (10) times as likely to be held back at least one year compared to children with normal hearing.
Many children are affected with ear infections: Chronic otis media (ear infections) affects 5 – 30% of children age 6 to 11 years and can persist 4 – 5 months with or without medical interventions.
Watch for possible symptoms of hearing and ear problems. Does your child: Tug at his/her ear; turn side of head towards parent; appear inattentive; strain when listening; make frequent mistakes following directions; day dreams; tend to isolate; tire easily; talk too loudly or too softly; have a speech problem; appear passive.
Does your child appear to have pain in their ear? Do you see redness or drainage from the ear?
Methods to assess for hearing loss in young children:
Otoacoustic Emissions Technology (OAE)
Otoacoustic Emissions is a hearing test that uses a small probe inserted into the external ear to introduce a sound stimulus (series of beeps) and measures the response sound, like an echo, emitted by the inner ear (cochlea) of a normal hearing person. The cochlea of a person with a hearing loss greater than 25-30 dB does not emit a sound in response to a sound stimulus.
Many studies have shown that screening children 0 – 3 years of age may be beneficial with OAEs. The OAE technology is very good for children who are unable to respond to a sound by raising their hand or dropping a toy in a bucket to indicate a response to the stimulus.
Children with developmental delays [possible autistic spectrum issues, possible intellectual disability] may not understand or often refuse to follow simple directions. OAE may be a useful screening for children with developmental delays.
Note that OAE may not detect mild hearing loss (20 dB to 40 dB) which may affect performance in school. The gold standard for screening children over age three is with a pure tone audiometer conducted by properly trained personnel.
To summarize: Parents can greatly reduce possible hearing loss in babies and young children with appropriate interventions. Know why its so important that children hear normally. Get medical attention immediately when young children appear to have difficulties with hearing normally.
Take children for routine screenings every 2 months during first year or as your pediatrician recommends. Watch for signs of possible ear infection and behaviors that indicate difficulties with hearing. Knowledge, parent involvement and appropriate medical interventions to improve hearing are particularly crucial during your child’s first six months. Parents can do a lot to reduce hearing loss in babies and young children.
In CA, children with developmental delays are typically referred for Early Start services. Early Start services are provided through the government from birth until the child turns three years old.
Roughly 70% of the children referred for Early Start services in CA are due to speech delays.
And, a very important medical questions is: Can this child hear normally? If a child applying for Early Start services cannot hear normally different medical interventions are needed to address hearing loss.
In Santa Cruz County assessment for Early Start services is done via various vendors. These vendors provide assessment reports concerning the overall development of the child/ applicant for Early Start services.
Whether or not the applicant for Early Start services can hear normally is vital to determining the appropriate kind of services to provide to the child.
Any parent who applies for Early Start services in Santa Cruz County should check with the vendor and whoever receives the assessment report and inquire about their child’s hearing abilities. Was the child’s hearing abilities screened? Can the child hear normally? And if the child does not hear normally, what appropriate medical services are recommended?
Remember the first sentences of this post: Hearing loss in young babies has profound effects on the general development of a child. And, parents can help in many ways so that their child hears and develops normally.
written by DrCameronJackson@gmail.com
