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Raising any child comes with a set of challenges (and joys!) unique to that individual. But for some children, those challenges are part of a set of special needs that parents will need professional help to meet. Whether your child was just diagnosed or you have years of experience dealing with their condition, expert guidance is always valuable. We asked local experts for their most essential advice to parents of children with several of the most common special needs. Here’s what they told us.
Expert: Stephen P. Hinshaw, psychology professor at UC Berkeley and vice-chair of psychology at the UCSF Weill Institute for Neurosciences.
What is ADHD? “Everyone has trouble, from time to time, in keeping focus or deciding not to act on impulse,” Hinshaw says. “But what if you were born with the propensity to have major issues with attention, self-control and impulse regulation throughout your life – in school, at the job, in relationships and preventing serious misjudgment and accidental injury? Attention deficit hyperactivity disorder (ADHD) is a condition – largely determined by genetics – that causes these kinds of behavioral problems.”
What is the biggest misconception? Hinshaw says the misconceptions about ADHD are too numerous to pick one, but he can narrow it down to three. First, people often believe it’s caused by a problem with schools or parents. “Parenting practices and schooling can have a major impact, positive or negative, for individuals with ADHD,” he says, but it’s caused by genes and possibly early-occurring influences in utero or early years of life.
“Second, it’s been assumed for a long while that ADHD largely afflicts middle-class boys.” In reality, ADHD persists throughout adulthood, and affects both men and women, and is prevalent in all socioeconomic groups.
Third, “Many feel that only medications are effective in treating ADHD,” or, that medications are “poisonous agents of social control.” Neither of these are the whole truth, he says. Medication can provide symptom relief, but behavioral treatments at home and school are essential to boosting a child’s academic and social skills, and the best results typically emanate from combined interventions.
How Parents Can Best Help: “Go to a practitioner who’s knowledgeable and who will take the time for a thorough, evidence-based assessment. Don’t trust anyone who claims to be able to diagnose ADHD in a 15-minute office visit.” If your child is diagnosed after a thorough evaluation, Hinshaw suggests asking around (try the practitioner who made the diagnosis, your pediatrician, or others in your community) for providers who are experienced in using evidence-based interventions for ADHD. His take-home message: Be skeptical of quick fixes.
Hinshaw recommends the CHADD (Children and Adults with ADHD) website (www.chadd.org) , as well as a book he published with co-author Katherine Ellison, “ADHD: What Everyone Needs to Know.” Learning Disabilities Online (ldonline.org) is another resource recommended by our experts, which has information for children with ADHD and other learning disabilities.
Autism Spectrum Disorders
Expert: Grace Gengoux. A clinical psychologist and board certified behavior analyst at Stanford’s Child and Adolescent Psychology Clinic
What is Autism? Autism is a neurodevelopmental disorder, “a disorder of brain function that affects children and adults throughout their development,” Gengoux says. “At the core, autism is a difficulty with relating to other people socially.”
Autism is a spectrum condition, which Gengoux explains: “If you’ve met one person with autism, you’ve met one person with autism. Really, no two people with autism are exactly alike.” And while there is a big difference in the symptoms of people on different “ends” of the spectrum, Gengoux says even those whose autism is considered less severe – they’re verbal and have average to gifted IQ – “honestly have no less difficulty.” They can still have a lot of challenges managing relationships, workplace environments and social interactions, she says.
Biggest Misconception? “One of the misconceptions is that individuals with autism aren’t interested in social interaction or interacting with other people. In my experience, a lot of times what’s happened is that because of the autism an individual may have had repeated negative experiences and might get discouraged about social interaction.”
How Parents Can Best Help: “I usually suggest to parents that they try to find whatever it is that their child is interested in, what the child is already motivated to do, and then figure out how to teach them within that interest.” So if a kid needs to learn how to have a conversation and she’s really interested in horses, start by helping her have conversations about horses. Or if he needs to improve his writing skills and he’s obsessed with Star Wars, start by asking him to write about Star Wars.
Recommended Resource: Gengoux recommends the early support program for autism, espa.stanford.edu, a center run by Stanford and the Children’s Health Council. It provides clinical care coordination for parents and providers, along with parent education. It’s a free service with no waitlist that anyone can enroll in. It’s mainly aimed at parents of young children who have just been diagnosed, but services and support are available to anyone who calls.
Expert: Robert Stout, program director of special education for Alameda County.
What is Dyslexia? “Dyslexia is defined as a variable, often familial, learning disability involving difficulties in acquiring and processing language that’s typically manifested by a lack of proficiency in reading, spelling, and writing. It’s characterized by difficulties with accurate and/or fluent word recognition, and by poor spelling and decoding abilities.”
Biggest Misconception? Stout says the biggest misconception is that “people with dyslexia just need to try harder. This is a neurobiological condition. Trying harder will not treat the problem.”
How Parents Can Best Help: “Consult with your pediatrician. There are specific tests they can administer to detect dyslexia.”
Recommended Resource: “Dyslexia is the “hot” disability at the moment,” Stout says. He cautions parents to “beware of miraculous-sounding ‘cures’ which are not peer reviewed by other scientists and doctors or websites that push a single program.” Some trustworthy resources he recommends are The International Dyslexia Association (dyslexiaida.org) and The Yale Center for Dyslexia and Creativity (dyslexia.yale.edu).
Expert: Adam Bartlett, pediatric physiatrist at the UCSF Benioff Children’s Hospital in Oakland
What are Physical Disabilities? Children with physical disabilities fall into two categories, Bartlett says: acquired or congenital. Acquired disabilities are the result of injury or illness. Congenital disabilities, like cerebral palsy, spina bifida or muscular dystrophy, are the result of a genetic syndrome, birth defect or an incident occurring immediately before or after birth.
Biggest Misconception? “The biggest misconception about physical disabilities is that they are always associated with cognitive impairment,” Bartlett says. “While some syndromes affect both motor function and intelligence, these are not necessarily associated.” Bartlett says when many people see a wheelchair or brace, they assume the child has lower intelligence, but this is “NOT true!”
How Parents Can Best Help: “Being the parent of a child with a physical disability can be especially challenging,” Bartlett says. “It’s important to enlist the right help.” Every child should see a pediatrician regularly, but children with physical disabilities may need other medical specialists – rehabilitation physicians, neurologists, neurosurgeons and orthopedic surgeons—to join the “treatment team.” Social workers may also be helpful and “physical and occupational therapists play important roles in maximizing mobility and function.”
Recommended Resources: “A referral from your pediatrician to a doctor specializing in the care of special needs children is a great first step,” Bartlett says. “It’s also important to involve the school to ensure mobility and access there and enrollment in state-level programs such as California Children’s Services or Regional Center may be appropriate depending on the specific diagnosis.”
Bartlett also recommends the many local and regional special sports and activities programs: “Bay Area Outreach and Recreation Program (www.borp.org) is a great local organization that coordinates programs across several sports including adaptive cycling, wheelchair basketball and power soccer. Achieve Tahoe (achievetahoe.org) organizes adaptive skiing and other winter sports activities for participants with a wide range of disabilities.” On a national level, junior Paralympic competitions “help introduce young athletes to the various disability classifications and provide opportunities to compete internationally and advance to the full Paralympic team when older.”
Expert: Hannah Oh, speech-language pathologist at UCSF Benioff Children’s Hospital Oakland.
What are Speech Disorders? Children with speech disorders “may experience spoken and written language disorders, speech sound disorders, or voice disorders, such as stuttering,” Oh says.
Biggest Misconception? “A lot of people take a ‘wait and see’ approach to speech and language development, but it’s best to consult a professional if you suspect any potential delays,” Oh says. Early intervention services (for children up to 3 years old) have been proven to positively affect cognitive and linguistic development.
How Parents Can Best Help: “Talk, sing and read to your children on a regular basis. Pay attention to your child’s interests and direct the content of your language around these interests.”
Recommended Resources for Parents: “The American Speech-Language-Hearing Association (asha.org) is a great resource for parents to access general information on typical listening and spoken language development as well as to find referrals for speech-language pathologists in their area.”
Expert: Gena Lewis, pediatrician and assistant clinical professor at UCSF and UCSF Benioff Children’s Hospital in Oakland.
What are Visual Impairments? “Vision limitations or visual impairment is a loss of vision that cannot be corrected by glasses or other interventions, and can result in a moderate loss to complete blindness,” Lewis says. “In children who have low vision from birth, development can occur more slowly than sighted children and early intervention services can help.”
Biggest Misconception? “A common misconception about children who are visually impaired is that they cannot see at all. Many children see lights and shapes and are quite in tune to these visual cues,” Lewis says. “It is always important to use verbal cues to explain to a child with vision limitations what is happening around them so they can have control over their personal space.”
How Parents Can Best Help Their Children With Visual Impairments: “The best way parents can help their child is to create their support team of family, friends, medical providers and therapists,” Lewis says, as well as finding a school environment with good intervention services and “providing safe and enriching activities so that children with visual impairment can live fulfilling lives.”
Disability Rights Education and Defense Fund (dredf.org)
More Resources from Bay Area Parent
Looking for more parenting support for your child with special needs? At www.bayareaparent.com/Special-Needs, we have many articles to help, such as:
Learn what other parents voted as the best in the Bay Area for resources for special needs parenting: www.bayareaparent.com/Article/Best-Special-Needs-ADHD-Services-in-the-Bay-Area.
Special Needs camps: www.bayareaparent.com/Article/Special-Needs-Camps-in-the-Bay-Area.
The new Magic Bridge Playground in Palo Alto: www.bayareaparent.com/Article/Best-Special-Needs-Playground-in-the-Bay-Area.
Learn all about Individualized Education Plans: www.bayareaparent.com/Article/Does-My-Child-Need-an-IEP.
Yoga for Kids with Special Needs: www.bayareaparent.com/Article/Yoga-for-for-Children-With-Special-Needs.
Freelance writer Mallory Pickett is a Santa Cruz-native who has a masters degree in Chemistry from UC San Diego and a masters degree in journalism from UC Berkeley.
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