A Mom Assess Her Role as a Parent of an Autistic Child

Isaac loves his iPad. It is with him from the moment he wakes until the second he goes to sleep. He has a few games he likes and he really enjoys looking through the photos but his all time love is YouTube. He is pretty typical of many 8 year old boys in that sense. […]

via How My Severely Autistic Son Used YouTube To Speak To Me — faithmummy

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It’s Almost Back-to-School Time for Children and Tees with Autism, ADHD, and Learning Disabilities. Here Are Some Useful Resources

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Back to school can be stressful for most children. For children with a learning disability, ADHD, dyslexia, or autism, these worries are often more severe. Our latest blog piece offers parents tips to make this transition ritual much less stressful.

Last Friday, we posted a link to our latest blog piece for parents of anxious children (often those with a learning disability, ADHD, or autism).

We add another free resource, from Autism Parenting magazine. It was published last year, but it is still available:

 

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Here is another helpful link for parents of a child with autism. This free resource has been around since last year, but it is still available for free. It contains much helpful material. Of course, we have advocacy services for parents in New Jersey.

Helping Individuals with Pica

Most of us are aware that infants like putting small nonfood objects in their mouth.  Some older children and even adults, however, continue the practice.  Then, this activity becomes an eating disorder called pica.  In fact, the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) defines pica as the “persistent eating of non-nutritive, nonfood substances for a period of at least one month,” particularly when doing so is not appropriate to the developmental level of the individual.  These substances can even include one’s own hair or finger nails.  Pica is especially dangerous when the individual ingests hazardous or poisonous materials such as paint chips that may contain lead, unsanitary items, or objects rendered sharp when they are broken.

pica magpie

The name Pica comes from the Medieval Latin word for magpie, a bird known to eat many different things.  The earliest known use of the term in medical literature was in 1563. Illustration by Eliza Turck, from Walter Swaysland, Familiar Wild Birds, (London: Cassell & Co., 1883). Public Domain, via Wikimedia Commons.

Pica often occurs in persons who have another mental disorder, such as anorexia, anxiety, or autism.  Among the latter, autistic individuals may enjoy the sensory stimulation this activity may provide.  It is not an effort to gain attention or the result of an inability to communicate needs.  The DSM-5 states that when pica occurs with another condition or disorder, is severe enough to warrant clinical attention.

All people who care for the individual must also be alerted to take the necessary steps to keep him or her safe, including the following:

  • Keep those items out of reach of the individual in the home and places in the community. At home, careful and frequent cleaning are critically important.
  • Communicate what is food and what isn’t and reinforcing those lessons
  • Enrich the individual’s sensory environment in ways that do not involve putting things into one’s mouth, such as activities that keep the hands busy
  • Follow through with established behavior plans (e.g., with Applied Behavior Analysis). This may include a system of rewards or schedule of small snacks of actual food items.

As with any psychological condition, preventing undesirable behaviors with healthy ones takes a great deal of patience, understanding, and being alert.

 

 

Important Webinar on Advocacy and Self-Advocacy Now Available

The Christopher and Dana Reeve Foundation have made their recent webinar, “Parenting with a Disability: Know your Rights and Take Action” available on YouTube, and it contains important information on what parents of a child with special needs need to know to advocate and self-advocate.

Our Most Notable and Favorite Disability Articles for the Week Ending June 17, 2016

At Advancing Opportunities, we excel in providing residential and respite services to people of with all disabilities, along with advocacy and education services for parents and guardians and assistive technology support.  As a leader in the field, we are pleased to share our experience, knowledge, and expertise with the disability community through our social media outlets: Facebook, Google+, LinkedIn, and Pinterest.  In our Disability and Ability Highlights of the Week column, we will select the best of what we found and shared and present them.  Please click on the titles with embedded links to find the full article.

Appalachian Trail Boardwalk

This is the perfect time to discover and enjoy one of New Jersey lesser-known treasures. This section of the Appalachian Trail comprises several boardwalks that travel a scenic and diverse landscape in the northern part of Sussex County, New Jersey. Photo: Daniel L. Berek 2016

 

 

Disability in the news (mostly in New Jersey, the population we serve)
A New Jersey mayor recommends centralizing all state supports for people living with disabilities under one state office.

Experts – professionals, academics, and parents – testify at the U.S. Senate on the importance of dyslexia in the workplace and society and the many talents people with dyslexia have.

The US Supreme Court is consulting with the Obama administration on a case involving the definition of a Free and Appropriate Public Education.

UN conference emphasizes the need for the proper diagnosis for people with autism.

 

 

For parents of a child with a disability (parenting, special needs):
Blog piece from an autistic writer and advocate:  Autistic behavior and consequences.

A recent study confirms what parents of children with ADHD have known all along:  these children take longer to fall asleep and sleep less.

Visually impaired young golfers have big dreams at New Jersey golf clinic.

 

 

Special education (including college for students with disability):
A primer on assistive technology in the classroom for students with special needs.  Digital devices and screen capability have helped countless students overcome communication hurdles and obstacles to class participation.

Using drama to boost social skills among students on the autism spectrum.

 

 

Inspirational and Informative (or Both!):
A former Rutgers football player paralyzed in 2010 game asks a friend with cerebral palsy to her prom.

 

 

Advocacy and self-advocacy:
Numerous people thought that Jocelyn, who has dyslexia, wasn’t smart.  Her mom knew better and took her story to the U.S. Senate.

A leading UK advocate for people with learning disabilities speaks out.

 

 

Assistive technology:
From the Ruderman Family Foundation:  When Mass Production Doesn’t Work: The Story of the Adaptive Design Association

The Apple Watch will enable wheelchair users to track their fitness goals.

 

 

People with a disability in the community (disability rights and acceptance):
What started out as therapy, has turned into a business for a young man with Down syndrome in Yukon OK.

 

 

Disability awareness:
A deaf person uses “the music of sign language” to express how sound is very much a part of her life.   She chooses to be empowered by embracing sound in her art and her life, leading to the music of ASL.  This is a fascinating and very positive TED Talk on how a person with a disability can use that very disability to explore and enlighten.
 

Medical news – research:
Research shows that having a first-degree relative with epilepsy significantly increases the risk of being diagnosed with autism; greater similarities in the brain have been identified.

A new study using fMRI finds that the brains of people with dyslexia work differently from those of people with dysgraphia.

A new look at sensory symptoms in autism: is it one or two?

 

 

People with disabilities in the arts:
An interesting conference on disability and the arts is scheduled to take place this September in Norway.

Mothers… of a Child with a Disability

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The first Mother’s Day was celebrated, in 1908, when Anna Jarvis held a memorial for her mother. When companies started capitalizing on the holiday by selling cards, Jarvis held a boycott of the holiday; as a day of gratitude, Mother’s Day cards should be handwritten expressions of love and gratitude.

Mother’s Day.  It comes around every May, but motherhood is a year-round occupation, if not celebration.  This axiom holds true especially for mothers of children with special needs.  It’s a bittersweet day.  One mother, Stephanie, thought she knew all there was to know about Mother’s Day, “and then came you.”  Her child taught her so much about being a mother, about life.  What she learned – and had to learn – was not in the popular books.  What she learned and had to learn were not in the advertisements, the pictures of the Gerber baby and other indescribably cute infants.

 

Present… and the Future

At times, research promises a lessening of the symptoms of a particular disability.  It is natural for more than one mother to reflect on what that would mean for her child.  Would she want to administer such a pill to her child?  After all, she (like most moms – and dads) feels unconditional love for their child with special needs.  Those sentiments conflict with the sincere desire of any parent to alleviate those symptoms that cause undue hardship constitute.  But at what point would that involve changing the child who he or she is?

All parents have hopes and expectations for their children.  The mother of a child with special needs is no exception.  However, she must consider the question as to what dreams are realistic in light of her son’s or daughter’s abilities – and disability.  Furthermore, will someone actually give her child with special needs a chance to work?

 

Oh, the Places She Would Go… if She Could

What mother of a child with special needs hasn’t read enough books and articles to qualify for an honorary degree?  She did – had to do – everything to become an expert on her child’s condition, knowledge that includes medical terminology, special-education jargon, and acronyms.  And there at least one highly organized star-chart, to keep track of doctors’ visits and therapy appointments, including those with her school’s special-education team.  It’s not a calendar for shopping days or nights out for dinner or movies.  At least with programs such as Parents’ Night Out and in-home respite, there can be some much-appreciated exceptions.  In addition, quality residential supports programs offer supportive environments that encourage and respect the independence of those children when they become adults.

 

Perfectly Imperfect

That said, a mother of a child with special needs find herself needing to make long-term sacrifices, mainly in their careers and financial well-being.  In fact, nearly 30 percent of mothers of a child with a disability live in poverty.  Furthermore, these mothers are more likely than other moms to suffer adverse health effects from their daily stress, even shorter lifespans.  It is tempting to see moms of a child with a disability as superheroes.  They perform an amazing job, it is true, but they are human like anyone else.  Moreover, these mothers do not need the added stress of believing they must need to live up to unrealistic expectations.  Mothers of children whose disability includes behavioral issues, such as ADHD (which often accompanies learning disabilities) often find themselves judged as weak or bad parents; of course, they are not!

Autism: Another Way of Being Uniquely Human

Uniquely Human

A review of : Prizant, Barry M. Uniquely Human. New York: SImon & Schuster, 2015.

For many parents, a diagnosis of autism answers one question but does not explain why their son or daughter has such difficulty expressing feelings, needs, and desires or why their social behavior differs so much from that of their peers.  Confronted by this mystery, these parents are understandably anxious.  What Barry Prizant seeks to do is to “turn self-doubt in to confidence and comfort, and to help them see as possible what they thought was impossible.”  The starting point is to adopt a fundamentally different way of seeing and understanding autism.  Most educators speak of “autistic behaviors,” undesirable traits that should be eliminated.  That is the classic medical model of autism, a condition or mental illness, or even a psychiatric abnormality.  That, says Prizant, needs to change.  “Autism isn’t an illness.  It’s a different way of being human…. To help [children with autism], we don’t need to change them or fix them.  We need to work to understand them, and then change what we do.”  In other words, Prizant adopts the perspective of neurodiversity, that conditions such as autism are part of our genetic make-up, a different way of thinking and being, “uniquely human.”  As such, this book makes an excellent companion to Steve Silberman’s NeuroTribes; both books are very welcome additions to the literature on autism.

 

Understanding Emotions
How do we work to understand children with autism, to help them?  And how do we change what we do?  Prizant explores these questions in the first part of Uniquely Human, “Understanding Autism.”  He proposes six steps:

Ask “Why?”  The first step is to go beyond answering why a child exhibits certain behaviors or patterns of speech with “because he has autism,” which leads to answering a question of why he has autism with “because he shows certain behaviors.”  Asking “Why?” entails going deeper, inquiring why a child does what she does.  The answer, says Prizant, is that the person is feeling emotional dysregulation.  In other words, people with autism experience discomfort, confusion, and anxiety more intensely than do most people, along with considerable difficulty coping with these emotions.  Many people with autism do what they do because it helps them, these behaviors are coping strategies or mechanisms.  What the autistic child wants – and needs – is information (even if the answer is readily apparent) to reduce the anxiety of uncertainty.

Listen.  Asking “Why?” is about empathy, and so is listening.  What may sound absurd or silly is, in fact, not.  The autistic child is telling a story.  For example, repeating a phrase, known as echolalia, is not nonsense talk, just another example of autistic behavior.   And it’s not “autistic behavior,” a pathology that presents an obstacle to the child fitting in socially.  Echolalia is, in Prizant’s words, an alternative way of communicating, using language for the same reasons everyone else does.  In fact, echolalia serves as a starting point, a learning strategy to acquiring language.

Accept enthusiasms.  Enthusiasms is Prizant’s term for what many people term “obsessions.”  Rather than being another “autistic behavior” that needs to be eliminated for the child to fit in socially, provide the child with autism with a motivational tool for learning.  Teachers and parents should use the autistic child’s enthusiasms as a bridge to learning other skills.  Hobbies fill a need in all of us: “An experience feeds a basic neurological need to be engaged, to appreciate beauty, and to experience positive emotion.”  These interests can lead one to find a uniquely fulfilling path in one’s work and life, as we are reminded by Sir Ken Robinson in his book, The Element. In this chapter, Prizant gives several excellent examples.

Understand trust, fear, and control.   According to Prizant, autism is best understood as a disability of trust: trust in the body, the world, and others.

  • Trust in the body. Children with autism have to cope with involuntary motor movements and, in the brain, thoughts.
  • Trust in the world. From the perspective of a child with autism, any change in routine is a violation of his trust in the world around him.
  • Trust in people. Because many people with autism find it difficult to “read” people, to predict their behavior, unexpected actions (even those that are entirely unintentional) pose a threat.  Autistic people go through life in a state of a heightened, hypervigilant alert.  Other people with autism have the opposite challenge: they react more slowly than others, internalizing their anxiety rather than directing it outward through behavior.

When one’s trust is challenged, the natural reaction is often to seek to exert control.  That does not mean that the autistic person is controlling or that such behavior needs to be extinguished.  What parents and teachers need to do is to build trust by acknowledging attempts to communicate, giving the person with autism choices in planning events, accepting the individual’s dysregulated emotional state, being dependable and clear, and celebrating successes, even small ones.

Recognizing emotional memory.  Emotional memories are those that are associated with a happy or sad, hopeful or frightening event.  Given that many people with autism have exceptional memory and, as stated earlier, often live in a state of heightened alert (similar to PTSD), these emotional memories are particularly strong in people with autism.  “A seemingly small association,” says Prizant, “can trigger what seems to be a disproportionately dramatic reaction.”  Anyone working with an autistic child must try to avoid these emotional triggers or offer something that can provide comfort, such as noise-cancelling headphones.

Helping with social understanding.  People with autism having difficulty with social understanding react in one of two ways:  They are oblivious to their blunders, or they are extremely anxious about what they do not understand.  Social skills training can help, but because the rules of social understanding come with so many exceptions, such teaching does not always work.  At the very least, social rules need to be taught very clearly and with directness – and explaining the meaning of phrases exactly and literally.  In addition, labeling pictures of people expressing certain emotions is ineffective; describing emotion in words is one of the most abstract tasks anyone can undertake.  It is better to introduce the appropriate label at the very moment that person is experiencing that particular emotion.  Moreover, says Prizant, the effort of autistic individuals to succeed in this area often causes them great stress.

 

 

Living with Autism
Teaching and caring for a child with autism takes a special person, someone who has “got it.”  These people know how to relax with the autistic child, to relate to him.  What does it take?  As Prizant explained, these people have empathy and sensitivity.  They ask “Why?” – why an autistic child is acting at this time and not another.  People who have “got it” share control with the autistic child.  They have a sense of humor.  They instill trust.  They are flexible.  What these people who have “got it” do not do is compile a list of deficits.  Rather than paying attention to a plan, they pay attention to the child, overlooking small setbacks in favor of seeing the overall trajectory of improvements in the way the autistic child is able to self-regulate.  For teachers and others working with the child with autism, they respect the parents’ hopes and dreams.  After all, says Prizant, parents know their child best.  Parents, in turn, should trust their gut, follow their instinct, while finding support groups with other parents of autistic children.  In addition, parents should actively advocate for their children but, in so doing, know the difference between being assertive and aggressive, as Prizant aptly discusses.