Patti's Blog - Advocate for Elders, People with Disabilities and Their Families

Link: Raising a Child With a Developmental Disorder — Understand the Signs and Know Your Resources

Raising a Child With a Developmental Disorder — Understand the Signs and Know Your Resources

Katherine Schreiber

Mon, March 13, 2023 at 6:34 AM EDT·7 min read

 

 

Jennifer Shapiro* had a feeling something wasn’t quite right with her infant son, Timothy. When she looked closely at him, his eyes rarely focused on hers. When she smiled at him, he seemed in a daze, never mirroring the gesture or the joy in her eyes. Timothy was Jennifer’s first child, and she was unsure whether her gut-level concerns — why does something just feel off? — were warranted. With the help of her pediatrician, Jennifer had Timothy evaluated by a team of early childhood experts, who discovered he was exhibiting a cognitive and social-emotional delay. Two years later, he was reevaluated and diagnosed with autism spectrum disorder. These were hard truths to swallow, but identifying them early was key, as it allowed Timothy to receive important treatments at a crucial developmental stage — treatments that would substantially improve his performance at school and his interactions with his peers.

According to the Centers for Disease Control and Prevention, approximately one out of six children in the US is diagnosed with a developmental delay or developmental disability. These are defined as cognitive, social, emotional, or physical challenges prior to or after age three, respectively. Not all delays warrant a diagnosis. However, when left unaddressed, these delays may set a child up for increased challenges as they grow older.

Identifying a Problem

Discerning whether your child or grandchild has a delay or is just taking longer to reach a milestone is tricky. But several red flags during their first years of life can be telling. You probably have grounds to be concerned “if your infant isn’t able to track objects with his eyes; hold her head up consistently when placed on her tummy; and isn’t babbling, cooing or beginning to say words by age 1,” explains Laurie Zelinger, Ph.D., a board-certified school psychologist and author of Please Explain “Terrorism” to Me! Not smiling by six months of age, resisting or reacting strongly to being soothed, and not showing interest in others or their surroundings are other signs that an infant may have a developmental delay or be at risk for a disability later in life.

Knowing the Signs

By age two, if your child or grandchild is not pointing to things she wants, cannot stack blocks, or is struggling to form basic sentences (like, “want more juice”) and follow simple instructions (think: “Bring Mommy the ball”) they could be experiencing a cognitive delay, Zelinger adds. Equally indicative is if a child cannot engage in joint attention — looking to where a caregiver is looking or looking to and from a caregiver and a toy while playing. Once age three rolls around, difficulties in walking, running, and feeding become reasons to worry, says Robert Goldman, Psy.D, J.D., chief psychologist and co-CEO of TLC Virtual Resiliency. So does avoiding eye contact, being disinterested in peers, or performing “stereotyped” behaviors (such as hand flapping, swaying, spinning or rocking) at any age.

Hypersensitivity to touch or sound and difficulties sucking, swallowing, or breathing and extreme pickiness once solid foods become introduced can also be warning signs of a delay
or disability, says Ari Yares, Ph.D., a nationally certified school psychologist in Washington, D.C. If you notice any of these signs, don’t wait too long to contact your pediatrician, Goldman advises. Your doctor can screen your child for delays or disabilities and refer you to an early-intervention or special-education program that, per the Individuals with Disabilities Education Act (IDEA), must offer free evaluations and services for qualifying families. Each state also has Parent Training and Information Centers (PTIs). These provide parents with support and education related to disabilities as well as guidance on obtaining services. Do an internet search for your local PTI to get started.

Getting Help

Research shows that many evidence-based treatments can help address developmental disorders and delays. Speech therapy helps children produce, articulate, and better comprehend language — and can help with feeding issues, like chewing and swallowing. Physical and occupational therapy address gross and fine motor skills. And behavior therapies help reinforce desired behaviors (sharing, sitting still and making eye contact) and reduce troubling ones (biting or hitting).

While most developmental disorders cannot be entirely resolved through treatment, addressing them early can reduce just how much of an impairment individuals may experience throughout their lives. It also improves their ability to function and be more independent at home, in school, at work and in social settings. Ideally, children should start treatment before beginning school. “Early intervention is especially important during children’s first five years of life, when their brains are rapidly developing new connections and are at their most malleable,” says Yares. “The data shows that getting kids support by preschool age or sooner has an impact on their learning and outcomes later in life.”

Children diagnosed with autism spectrum disorder (ASD) can especially gain from early intervention. Applied behavior analysis (ABA) is the most common treatment for ASD. It entails planning and assessment of goals. These range from basic communication skills (e.g., asking for a desired item) to emotion regulation (counting to 10 when angry instead of throwing
or breaking objects). ABA therapists reward desired behaviors and ignore undesired ones. “Social-skills training and providing opportunities for children to engage with peers who don’t have a diagnosis of autism have also been shown to help children with autism learn to model appropriate social behavior,” adds Goldman.

Common Autism Myths

Autism spectrum disorder (ASD) refers to a range of impairments in cognitive, behavioral, communication and social-interaction abilities. Approximately one in every 44 children in the US meets the criteria for autism. Though awareness about autism has increased in recent years, there are still many common misconceptions about the disorder. Here are a few of the biggest that advocates and professionals are working hard to dispel.

Myth #1: Vaccines can cause autism.

Numerous studies have disproved the false link between vaccines and autism, popularized by a now discredited doctor in the late 1990s. Put simply: There is no connection between getting your child vaccinated and an increased risk of autism. And not vaccinating your child puts her at a much greater risk of getting seriously ill. This is one reason why there has been a resurgence of infectious diseases, such as mumps and whooping cough, throughout much of the US.

Myth #2: Autism looks the same in every case.

“Autism spectrum disorder is a complex collection of symptoms, and not every child exhibits every one,” explains Yares. “Children may receive a diagnosis range from high-functioning to low-functioning.” Some may be incredibly gifted in a specific area. Approximately one in every 10 cases of autism exhibits “savantism” — yet struggle to express empathy and connect with peers. Others may experience severe delays in learning, communication, emotion-regulation and self-help skills.

Myth #3: People with autism don't feel empathy.

Autism itself is not a barrier to empathy. Rather, a condition called alexithymia — which is more common among individuals with autistic spectrum disorder — can make understanding and identifying emotions difficult. About half of all individuals with autism meet the criteria for alexithymia.

Where to Get Help

The following websites and organizations provide a wealth of knowledge and guidance for parents concerned about potential delays or disabilities.

A version of this article appeared in our partner magazine The Science of Raising Happy Kids.

* Names have been changed for privacy.

Raising a Child With a Developmental Disorder — Understand the Signs and Know Your Resources
Yahoo Life.com
https://www.yahoo.com/lifestyle/raising-child-developmental-disorder-understand-103432627.html ?
#ASD #autismawareness #myths #earlyyears #AutismAcceptance #earlywarningsforall #parentingtips

High Test Scores, Disruptive in Class…Academic or Discipline Issue?

Excerpt from: The Wrightslaw Way (click for full article)

 

I cannot tell from your e-mail what help your daughter needs, or what is already being provided in her IEP. However, if her needs were being met, it is unlikely that she would be failing, disruptive, or having significant disciplinary issues.

If you can afford to enroll her in an appropriate private school, then by all means do that.

Unless your daughter has had a very recent private sector neuropsychological evaluation, you probably do not know specifically what she needs.  Without knowing what she needs, it is more than likely you will not be successful in finding an appropriate school. Disruptive high school students can become disruptive adults. The legal system is not supportive or kind to disruptive adults.

If you can afford the several hundred thousand dollars that a private special education high school will likely cost you, take that route. Or, work with an experienced advocate in your area.

If the advocate reviews the file and tells you that the case is past advocacy and requires an attorney, do not hesitate to follow that advice.

There may not be a lot of time left to get help before the disruptive behavior becomes a more immediate issue than the academic issue.

Raising Awareness of Williams Syndrome

Excerpt from: The Arc (click for full article)

 

In 2010, the Williams Syndrome Association designated the 1^st full week in May as “Williams Syndrome Awareness Week.”  In the years since, the number of awareness events for Williams syndrome held annually has grown tremendously, and this year, Congressman Jim Moran (D-VA) will introduce a resolution in Congress (H-Res 194) in recognition of the entire month of May as Williams syndrome Awareness month.  What do you know about Williams syndrome?

Williams syndrome is a genetic condition that is present at birth and can affect anyone.  It is characterized by medical and cognitive problems, including cardiovascular disease, developmental delays, and learning disabilities.  These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.

WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture.

Unlike disorders that can make connecting with your child difficult, children with WS tend to be social, friendly and endearing.  Parents often say the joy and perspective a child with WS brings into their lives had been unimaginable.

Up to 10 Percent Children Affected by Specific Learning Disabilities

Excerpt from: Science World Report (click for full article)

 

A recent study published in the journal Science states that up to 10 percent children fall victim to special learning disabilities, which translates to 2-3 pupils in every classroom.

The study was conducted by academics at UCL and Goldsmiths. The study suggests that children are frequently affected by more than one learning disability, such as dyslexia, dyscalculia and autism.

It is reported that learning disabilities such as dyslexia, dyscalculia, attention-deficit/hyperactivity disorder, autism spectrum disorder and specific language impairment are a result of a typical brain development with complex genetic and environmental causes.

Support the Sensory Project

Excerpt from: Supporting People with Intellectual Disabilities (click for full article)

 

The Sensory Story Project aims to create high quality affordable sensory stories that schools, families and other interested parties can purchase. Are you able to support this project, you can donate as little as £1 here.

Sensory Stories are a simple way of telling stories using all the senses. The stories are short, each sentence within them is combined with a rich sensory experience. They are fun and engaging for children (and adults) of all ages but hold particular benefits to some groups:

• Individuals with profound and multiple learning disabilities may learn in a sensory way; sensory stories are a way of supporting sensory learning. 
• Children who have sensory processing disorder or for whom sensory processing issues co-occur alongside conditions such as Autism, ADHD or Tourettes can benefit from sensory stories as they provide them with safe opportunities to encounter stimuli and learn to regulate their responses to it. 
• Sensory stories can also help children who have proprioception difficulties, as through exploring different sensory stimuli it can be possible to find a stimulus that is calming to a child which can then be used at other times (not just during story telling) to provide reassurance.

The Sensory Story Project will only go ahead if backed by people who understand it's worth.

Is Your Child's IEP Really Individualized?

Excerpt from: Wrightslaw (click for full article)

 

What's the "I" in IEP? IEPs must be Individualized to the unique needs of each child with a disability. That means your child's IEP should be tailored to his specific needs.

In this issue of the Special Ed Advocate, you will get an IEP checklist to help you make sure your child's education plan is individualized. Learn what specific information IDEA requires in the IEP.

‘Learning disabilities’ movement turns 50

Excerpt from: Washington Post (click for full article)

 

This month, we will commemorate an important historical event that opened doors for generations of students with learning differences and, in essence, may have made Landmark College, where I teach possible. At Landmark, we specialize in teaching students who learn differently, using methods designed specifically for those with dyslexia, ADHD and Autism Spectrum Disorders.

Fifty years ago, on April 6, 1963, a group of concerned parents convened a conference in Chicago to discuss a shared frustration:  they all had children who were struggling in school, the cause of which was generally believed to be laziness, lack of intelligence, or just bad parenting.  This group of parents knew better.  They understood that their children were bright and just as eager to learn as any other child, but that they needed help and alternative teaching approaches to succeed in school.

Improving communication for people with learning disabilities

Excerpt from: Supporting People with Intellectual Disabilities (click for full article)

 

There is a free online article from the Nursing Standard describing how communication for people with learning disabilities can be improved in healthcare settings. Download it here.

Study finds people with learning disabilities are more likely to have a premature death compared with general population

Excerpt from: Medical Press (click for full article)

 

Researchers from the University's Norah Fry Research Centre and School of Social and Community Medicine, together with colleagues from NHS Bristol and the Royal College of General Practitioners, reviewed the sequence of events leading to all known deaths of 233 adults with learning disabilities, 14 children with learning disabilities and 58 comparator cases (adults without learning disabilities who died in the study area during the same period of time). All deaths occurred over a two-year period in any of five Primary Care Trust (PCT) areas of South West England. The findings showed that people with learning disabilities are more likely to have a premature death than those in the general population. Researchers found that men with learning disabilities died, on average, 13 years sooner than men in the general population. Women with learning disabilities died, on average, 20 years sooner than women in the general population. Overall, 22 per cent of the people with learning disabilities were under the age of 50 when they died, compared with just nine per cent of people in the general population.

Read more at: http://medicalxpress.com/news/2013-03-people-disabilities-premature-death-population.html#jCp

Researchers from the University's Norah Fry Research Centre and School of Social and Community Medicine, together with colleagues from NHS Bristol and the Royal College of General Practitioners, reviewed the sequence of events leading to all known deaths of 233 adults with learning disabilities, 14 children with learning disabilities and 58 comparator cases (adults without learning disabilities who died in the study area during the same period of time). All deaths occurred over a two-year period in any of five Primary Care Trust (PCT) areas of South West England.

The findings showed that people with learning disabilities are more likely to have a premature death than those in the general population. Researchers found that men with learning disabilities died, on average, 13 years sooner than men in the general population. Women with learning disabilities died, on average, 20 years sooner than women in the general population. Overall, 22 per cent of the people with learning disabilities were under the age of 50 when they died, compared with just nine per cent of people in the general population.

Researchers from the University's Norah Fry Research Centre and School of Social and Community Medicine, together with colleagues from NHS Bristol and the Royal College of General Practitioners, reviewed the sequence of events leading to all known deaths of 233 adults with learning disabilities, 14 children with learning disabilities and 58 comparator cases (adults without learning disabilities who died in the study area during the same period of time). All deaths occurred over a two-year period in any of five Primary Care Trust (PCT) areas of South West England. The findings showed that people with learning disabilities are more likely to have a premature death than those in the general population. Researchers found that men with learning disabilities died, on average, 13 years sooner than men in the general population. Women with learning disabilities died, on average, 20 years sooner than women in the general population. Overall, 22 per cent of the people with learning disabilities were under the age of 50 when they died, compared with just nine per cent of people in the general population.

Read more at: http://medicalxpress.com/news/2013-03-people-disabilities-premature-death-population.html#jCp

Your IEP Roadmap: Education Pathways for Your Child

Excerpt from: National Center for Learning Disabilities (click for full article)

 

An Individualized Education Program (IEP) is the first stop on the road after determining your child’s eligibility under the IDEA 2004. That road can be hard to navigate without guidance, so we've produced a roadmap to guide you.

The thorough graphic gives a visual and easy-to-use overview of the IEP process, from intervention and evaluation to classification and planning accommodations. You'll see the different pathways you and your child can take, including developing an IEP or 504 Plan.