April is Autism Awareness Month

April is Autism Awareness Month, a time to celebrate the unique abilities and strengths of individuals on the autism spectrum. Neurodiversity refers to the variations in neurocognitive functioning across individuals. Neurodiversity is essential for a fully functioning society. Individuals on the autism spectrum make a highly valuable contribution to this diversity. Unfortunately, many people with autism face barriers to acceptance and understanding in their communities. It’s important for us all to recognize the value of neurodiversity and to support and accept individuals on the autism spectrum.

Autism is a neurodevelopmental disorder that affects social communication and behavior. Based on the most recent CDC report released this month around 1 in 36 children in the United States have been identified with autism spectrum disorder (ASD; Source: https://www.cdc.gov/media/releases/2023/p0323-autism.html). While autism can present challenges, individuals with autism also have unique talents and strengths that can enrich our communities. Many people on the autism spectrum have exceptional memory, attention to detail, ability to reliably complete complex and repetitive tasks, and problem-solving skills. They may also have a great deal of curiosity about a particular subject, develop highly detailed knowledge of that subject, which can lead to great achievements and innovations. One such example is the “hug box” Dr. Temple Grandin developed.

Dr. Grandin is a well-known advocate for individuals on the autism spectrum and writes about her own experiences with this diagnosis in her book, “Thinking in Pictures,” first published in 1995. She is also an animal behavior expert who developed the “hug box” or “squeeze machine” that provides deep pressure stimulation to livestock to alleviate anxiety during their handling and transport. No doubt she derived inspiration for this device in part based on her own understanding of discomfort during transitions and the experience of sensory overwhelm. Deep pressure is a known method to soothe many individuals with autism spectrum disorder.

Despite the strengths of individuals on the autism spectrum, they often face discrimination and social exclusion. Many people with autism struggle to communicate and interact with others in ways that are expected in social situations. They may also experience sensory sensitivities that can make certain environments or experiences overwhelming. As a result, they may struggle to make friends, find it difficult to attain or maintain employment, and may face bullying or harassment.

As members of our communities, we can recognize and value the diversity of how each individual thinks and processes the world. This means conveying acceptance in our day to day lives, whether at work, at the grocery store, or when interacting with others in the neighborhood. Here are some ways we can support and accept individuals on the autism spectrum:

1.       Educate ourselves: Learn about autism and the experiences of individuals on the autism spectrum. This can help us better understand their challenges and strengths.

2.       Listen and communicate: Individuals with autism may struggle with verbal communication or understanding social cues. It’s important to be patient, listen carefully, clarify when necessary, and communicate clearly.

3.       Create and celebrate inclusive environments: Provide or be aware of accommodations and modifications that allow individuals with autism to participate fully in our communities. This can include sensory-friendly spaces, visual aids, or modified communication methods.

4.       Celebrate differences: Recognize that individuals with autism have unique talents and perspectives. Celebrate their strengths and contributions to our communities.

5.       Advocate for inclusion and acceptance: Speak up for the rights and inclusion of individuals with autism in our communities. Challenge discrimination and promote understanding and acceptance.

6.       Develop a curious and nonjudgmental stance. Have you ever noticed a child crying uncontrollably at the grocery store, restaurant or neighborhood park? Remain patient and curious. Smile at a struggling parent and make brief eye contact in a way that conveys, “We are together in this, and I accept you.”

Autism Awareness Month is a time to celebrate the value of neurodiversity and promote acceptance and inclusion for individuals on the autism spectrum. By recognizing and celebrating the unique talents and strengths of individuals with autism, and creating inclusive environments that allow them to thrive, we can build more diverse and vibrant communities for us all to enjoy.

For more information please visit:

Centers for Disease Control and Prevention. (2021). Autism spectrum disorder (ASD). https://www.cdc.gov/ncbddd/autism/facts.html

National Institute of Mental Health. (2019). Autism spectrum disorder. https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml

Back-to-school tips

BACK-TO-SCHOOL TIPS

A new school year will be here before you know it. And if your child is about to start in a new grade or classroom—or a whole new school—summer is your best time to lay the groundwork for a productive year.

While that applies to all school-age kids, it’s especially true if the child has special needs. And doubly so after two years of COVID-19-related disruptions.

While you’re squeezing as much enjoyment as possible from summertime, it makes sense to spend some part of the steamy weeks ahead focusing on the academic rigors of fall and beyond. These tips can help prepare your child for a smooth transition to a new school year.

• Get organized. Education is all about information, and you know you’ll be receiving a lot of it. Including meeting invitations, reminders, progress reports and other important paperwork. Also notes from phone conversations and other interactions. It helps if you can get a jump on that firehose of information. Set up a system that helps you keep track of it all, all in one place. Organize it according to your own priorities since you’re the one who’ll be consulting it. Managing your child’s education is easier if you know where to turn for all the info you’ll need.

• Review your child’s IEP. Over time, Individualized Education Plans (IEP) expire. They get stale. They may not account for the child’s most recent milestones and achievements. Revisit your child’s plan now and arm yourself with a list of what needs to change. Don’t hesitate to request an IEP review meeting if you feel one is needed. Even if no updates are required, be sure you know the expiration date.

• Build excitement, not fear. Your child will likely have some reservations about the coming school year—especially if it involves transitioning to a new school. Encourage your child to talk about the classes and activities they’re most—and least—excited about. Focus on ways they’ll benefit from learning new skills and having new friends.

• Build a new routine. Develop a new schooltime routine for the coming year. If you can do that with input and buy-in from your child, they’ll have good reasons to stick with it. Perhaps start with mornings and evenings. Practice wake-up, hygiene, mealtime and ready-for-school routines during the summer and tweak as necessary. By the time school starts, it’ll all feel familiar

• Stay informed. To be a better advocate for your child, it’s important to know the dynamics. Learn about pending legislation and other developments that determine how special education is conducted in your area. That includes at the state and local levels. You’ll be less likely to feel blindsided if something changes.

• Make logistics more familiar. Is there a new way your child will get to and from school? A new place where they’ll be having lunch? Summer is a great time to introduce those activities. By the time school starts your child will have a better handle on what to expect.

• Visit new teacher(s) and classroom(s). If your child will be exposed to new people and new environments this year, they may feel more comfortable if you can arrange a visit in advance. Show them around. Letting the child take in the newness helps remove the sting of uncertainty—at a time when there’s less pressure. Early visiting can also help educators get more familiar with your child.

For more on Hope Haven’s Discovery School, our facilities, educators, and staff, or to arrange a tour, contact us at 904-346-5100.

New realities after ASD diagnosis–Part 1

New realities after ASD diagnosis–Part 1

It’s among the scariest sentences any parent can hear: Your child has autism. The parents of one in every 54 American children will receive this news this year, according to the Centers for Disease Control and Prevention (CDC).

Learning that a child has autism spectrum disorder (ASD) affects families in profound ways and can prompt intense initial reactions that are perfectly understandable: fear or panic, guilt or shame, denial or disbelief.

However, some parents are relieved to finally have a diagnosis—relieved because they've suspected it and they've learned that the diagnosis will connect them to treatments that often make a tremendous difference in the child’s development. In either case, it's helpful for parents and others in the child’s orbit to understand what an ASD diagnosis means and how best to approach it.

Start with a few basic facts about the condition:

·      ASD diagnoses are increasing. It’s ten times more likely to be diagnosed today than it was four decades ago.

·      ASD is approximately four times more likely to affect boys than girls.

·      ASD signs and symptoms vary widely, but most children with ASD have trouble in one or more of three basic areas: interacting with the world, communicating with people, and repetitive interests or behaviors.

·      There’s no single identified cause of ASD, though there are a number of underlying factors that make someone more likely to develop the condition. Broadly, these include a combination of genetic, environmental and biological factors. No one is to blame for it.

·      ASD takes many forms and affects different people in different ways. Some with ASD are able to speak fluently but have other difficulties with communication such as linking words with eye contact, facial expressions and gestures. Some may struggle with using the right content and delivery at the right time. The difference between mild and severe ASD is defined by the amount of support the individual with autism needs.

What an autism diagnosis means

An ASD diagnosis challenges many people’s most basic assumptions and expectations about family life. But over time, having a family member with ASD is not as devastating as it may seem at first.

As a parent grappling with this new information, you’ll likely move through a series of stages as you gain clarity about what you’ll be facing. While everyone’s experience differs, the process at its most basic level usually looks like this:

·      First, you’ll likely experience greater awareness of ASD and its parameters; you may find yourself on a fact-finding mission to learn as much as you can about the condition.

·      Then you’ll gain an acceptance of the new reality and an understanding of the ways it affects you, your child, your family and your wider social environment.

·      Next, you’ll come to appreciate that ASD isn’t just about weaknesses and deficits—it’s also about strengths and possibilities that other kids don’t have. It’s not all downside; there’s an upside, too. Some of your child’s successes will be because of ASD, not in spite of it. People with ASD are unique and interesting. They aren’t less than; they’re different from.

·      Finally, you’ll reach a stage where you feel ready to start taking action and advocating for your child. One goal will be to ensure they get the level and types of support they require as they grow and develop. You’ll find ways to integrate the diagnosis into your family members’ lives. As your child grows, your focus will shift toward helping their life be as independent and fulfilling as possible.

For information on first steps you can take, self-care tips, learning to evaluate information, and long-term helpful strategies, continue reading Part 2 of this blog.

Hope Haven serves children with all kinds of challenges and disabilities, including lots of kids with varying forms of ASD. If you’re not already familiar with our programs, including the evaluation and therapy services we offer, call us at 904-346-5100 to schedule a tour and for more information

Continue to New realities after ASD diagnosis–Part 2

New realities after ASD diagnosis–Part 2

NEW REALITIES AFTER ASD DIAGNOSIS–PART 2

In Part 1, you read about autism spectrum disorder (ASD), what it is and what an ASD diagnosis means. Now learn some of the many positive steps you can take for yourself, your family and your child with ASD.

First steps you can take

• Learn. Do some research about ASD to anticipate what signs and symptoms to look for as your child develops—and how to react if they occur. This gives you added confidence and focus. Ask the clinician who provided the diagnosis to give suggestions for high-quality and trustworthy information.  

• Observe and empathize. Since young children can’t always describe their experiences accurately, pay close attention to their behaviors. Watch for subtle cues that help you understand the experience from your child’s perspective. It may help to write down any patterns you notice—maybe use a journal you can refer to. 

• Build a team. Start assembling resources you can rely on as you consider decisions about your child’s therapy and education. The team might include professionals in the medical, therapeutic, education and even legal fields. Look for experience specifically in the autism community.

• Heads-up. To the adults your child interacts with, it may not be clear that your previously undiagnosed child is on the spectrum. Consider sharing the diagnosis so they can adjust their expectations and behavior. That said, if someone stares at your child or makes a judgmental comment about their behavior when you are out in public (such as at a grocery store or restaurant), feel free to ignore them. You can decide with whom and when you share your child’s diagnosis. Provide space and patience for others—we don't know their struggles just as they don't know ours. 

Self-care

Autism isn’t just about your child. Caregivers, including family members, need attention and downtime. Consider these recommendations from people who have navigated the waters you’re in now.

• Prioritize your own needs. Parenting a child with ASD is hard, and it’s not something you should try to do without help. So, take your own needs seriously from the get-go. Self-care places you in a better position to meet your child’s needs. 

• Don’t delay your child’s therapy and intervention. The sooner you implement a treatment program, including individualized activities that strengthen your child’s progress, the sooner you can set up your own support system.

• Request logistical help. Don't hesitate to ask friends, neighbors, family members and others for occasional support. Whether it takes the form of errands, cooking, babysitting or other chores, you’ll find people who are eager to help but don’t yet know how. Don’t be shy about this. 

• Research and join support groups. You’ll meet and compare notes with other parents of kids with ASD. The experience can give you a reliable source of encouragement and a setting where you can share your own fears and emotions freely. 

• Take frequent breaks. As you would with any activity that requires focus, disengage occasionally. Give yourself permission to go out on a date with your spouse/partner or meet up with friends. This isn't selfish behavior, but self-care. Walk the dog, take a quick nap, go for a stroll, or even visit the gym. Your concentration will improve, and so will your outlook.

• Trust your instincts. You know your child’s quirks better than anyone. You may need to push back against well-meaning advice. If it feels wrong for your child, listen to your instincts. If a treatment or method is advertised to offer a “cure” or quick fix, this should ring some alarm bells, as autism is a complex neurodevelopmental disorder.

• Celebrate accomplishments. Find the joy in your child’s successes, no matter how seemingly insignificant, without comparing them to the successes of others. Love your child for who they are. Your child can and will continue to grow and develop. Taking note of each incremental step can be joyful and awe-inspiring.  

Evaluate what you read and hear

There’s a lot of misinformation out there, including sweeping claims about ASD. Maintain a healthy skepticism—especially if you don’t already know and trust the source. For example, you may encounter incorrect assertions like these:

• People with ASD are all intellectually disabled: Not necessarily. ASD is a neurodevelopmental condition. Many have normal IQs or higher.

• People with ASD can’t talk: Not necessarily. Some children with ASD develop speech later than their peers or might speak in an unusual style. 

• People with ASD don’t experience normal emotions: Wrong. They have a full range of emotions but may not have the ability to express them in familiar ways.

• ASD is caused by childhood vaccinations: There is no reliable scientific evidence that vaccinations cause ASD. However, there is reliable scientific evidence that failing to vaccinate a child has led to a rise in preventable diseases.

Long-term strategies

As the newness of your child’s diagnosis fades, you’ll start settling into a routine. Not just the day-to-day logistics, but also an emotional routine. You may still encounter negative emotions even after you think you’ve developed a positive outlook. Consider these tips to stay on track:

• Remain undaunted. There’s a lot of uncertainty about ASD, which can shake your confidence. As your child’s fiercest advocate, arm yourself with the facts and a robust hand-picked support team. You’ve got this.

• Count your blessings. Your child is the same baby you fell in love with, and they'll continue to bring you joy. 

• Short-circuit the blame game. Despite your best efforts, you may catch yourself occasionally, perhaps subconsciously, wondering what you did wrong. Remember there’s nothing you did—or failed to do—to cause your child to have ASD. Repeat as often and as forcefully as necessary. 

• Participate with the ASD community. You’ll draw strength from more experienced parents of ASD kids; other parents with less experience will draw strength from you. We all help each other.

• Share freely. Include family members in as many activities as possible. Siblings and extended family members can be a great support as they share a role in caring for your child with ASD. Consider sharing details about your child’s ASD diagnosis with siblings in an age-appropriate way. 

• Dream differently. Adjust your expectations for your child in ways that align with what’s possible. In your child’s eyes, a victory is still a victory, and that’s always worth celebrating. And hold this thought in the back of your mind: Like all kids, your child with ASD will find ways to surprise and delight you.

Hope Haven serves children with all kinds of challenges and disabilities, including lots of kids with varying forms of ASD. If you’re not already familiar with our programs, including the evaluation and therapy services we offer, call us at 904-346-5100 to schedule a tour and for more information.

For basic facts about ASD and what an ASD diagnosis means, read New realities after ASD diagnosis–Part 1

Early childhood ASD assessments

EARLY CHILDHOOD ASD ASSESSMENTS

In most areas of healthcare, early detection often leads to more effective treatment and better outcomes. That’s common sense and good medicine in general. In the case of autism spectrum disorder (ASD), the concept is critical. Because if a child is on the spectrum, the sooner they can be identified, the sooner they can start receiving specialized resources. 

Those resources can include services like applied behavior analysis (ABA) services, therapies like speech/language therapy, occupational therapy and physical therapy, as well as access to assistive technologies and programs like Early Steps, Agency for Persons with Disabilities (APD), Florida’s Family Empowerment Scholarship, and others.

But there’s no fast, easy blood test that tells doctors if someone has ASD. Diagnosing ASD requires an assessment, performed by a trained clinician, based on the patient’s behavior and other factors. And the behavior of an infant or toddler is hard to analyze. They haven’t even mastered language skills at that age.

Up to now, parents who suspected a child might be showing signs of ASD had to wait months, even years, for an official assessment. That assessment is the document that determines whether the child qualifies for specialized services—and, if so, which ones. So the sooner the assessment can be completed, the better.

Allison Cato, Ph.D., in-house neuropsychologist at Hope Haven

But how do you evaluate a child for ASD if they’re too young to even speak?

Dr. Allison Cato, Ph.D., in-house neuropsychologist at Hope Haven, has perfected a methodology for identifying ASD patients earlier than ever—as early as 18 months.

First piloted at Hope Haven in 2019, the methodology allows staff to complete the ASD evaluation within a week, and be prepared for discussion of results in as little as two weeks. Findings can typically be documented and reviewed with the family two weeks later. That means kids who need those specialized ASD services can get them much sooner, when they can help the most.

Dr. Cato also provides a wide range of other assessments, including IQ testing, psychoeducational evaluations, and comprehensive neuropsychological evaluations. If you suspect a child might be showing signs of ASD or other development issues, or to set up a tour, contact Hope Haven at 904-346-5100.

Contextual Coaching helps students interact more confidently

CONTEXTUAL COACHING HELPS STUDENTS INTERACT MORE CONFIDENTLY

Interacting with others may be uncomfortable, so it takes practice. For most, it eventually becomes second-nature; a person notches daily experiences just by talking, listening, and engaging in the back-and-forth with other people in various roles. Each of those experiences helps build a base of lifelong communication skills.

For youngsters with physical, emotional or behavioral challenges, though, communicating takes more effort. There might be perceptual problems (sight and hearing), cognitive challenges making sense of information, or difficulty interpreting subtle cues like facial expressions or hand gestures. These added challenges sometimes combine to make the simple act of conversation more of an uphill battle.

Contextual Coaching at Hope Haven’s Mixed Reality Training Lab can help. Think of it as a place where individuals can hone their communication skills in a safe environment—without misunderstandings, egos and fears getting in the way. It can help anyone with existing interaction issues gain greater confidence, poise and self-assurance as they navigate the real world.

How Contextual Coaching can help—it's what makes learning stick

Student practices and interacts with the avatar onscreen to gain familiarity and comfort this lesson scenario.

To help students practice and master communication skills, the lab employs a unique combination of forces: A tech environment populated with avatars instead of real people, plus specially trained coaches who create simulations based on the specific needs of each student. For example, if a student needs to practice interacting with a teacher, they might each create an avatar situated in a simulated classroom.

For the student, using avatars takes the perceived danger out of these learning exercises, so the interaction becomes less scary. And the coach can devise actual meaningful scenarios for practice, so the sessions address actual concerns that have been identified. For example, if the student is afraid to ask questions in a classroom setting, their avatars practice role-playing until the student acquires the confidence to raise her hand and formulate her question for the teacher. And the teacher provides real-time guidance in the form of positive and supportive feedback. “You did a great job with that. Want to practice it again?” 

Using a varieties of scenarios and situations, students practice different social skills each week by interacting with various avatars onscreen.

Students in the program practice different social skills each week, in classes small enough to give individual attention to each participant. Lessons and practice sessions are facilitated by a licensed mental health counselor. Take-home assignments with instructions are available, so the student can practice at home between sessions. 

Contextual Coaching is available for employment services students, ages 14-21. The program focuses improving:

• self-awarenes

• reading and identifying social cues

• social anxiety

• impulse control

• social conversation skills

• fears and phobias

Enrollment

To enroll a student in Contextual Coaching, start by filling out a Mixed Reality Inquiry form, which lets you specify the kinds of issues the student is having. Plus, you can determine when you’d like to receive a call from Hope Haven with more details. The program is currently free for participants as a result of generous funding from Florida Blue. 

Service animals: a primer

SERVICE ANIMALS: A PRIMER

If you have a child with a mental, physical, emotional or other impairment, a service animal could provide a number of benefits that add to their quality of life. Since 2010, the Americans with Disabilities Act (ADA) has had updated rules and regulations to accommodate the contributions of service animals.

What service animals are trained for

According to the ADA, service animals have specific training to help humans who have “a physical, sensory, psychiatric, intellectual, or other mental disability.” Depending on the owner’s unique needs, the training prepares the animal to perform a wide range of tasks. These may include:

• guiding people with visual impairment

• alerting people with hearing loss to dangers

• summoning help for a person in distress

• disrupting someone who is self-harming or behaving impulsively

• providing physical balance or stability 

• calming a person suffering from trauma or anxiety 

This description might remind you of the mid-20th century TV character Lassie. But what sets service animals apart from a trusted and beloved family pet is, basically, training. And they receive a lot of it—far beyond sitting, staying, heeling, and the “obedience training” people give their pets. To understand the role of today’s highly-trained service animals, imagine the prototype: seeing-eye dogs. Focused, reliable even in a stressful situation, and deeply bonded with their assigned human.

How a service animal can help a child with special needs

Beyond the fact that most kids naturally love animals in general, service animals can help in a number of specific ways. For example:

• If a child has issues with emotional or behavior regulation, a service animal can model how and when to behave appropriately.

• If a child has mobility problems, they can help the child manage transfers, retrieve hard-to-reach objects, or avoid collisions. Some service animals can even help pull a wheelchair.

• If a child has visual, cognitive or auditory impairment, they can help the child navigate their world more safely and independently.

• If a child is having a medical emergency, like a seizure, they can summon help by alerting others.

• If a child lacks social or communication skills, they can respond to commands and react predictably.

• The child gains a sense of self-esteem and accomplishment by taking responsibility for the animal’s care and well-being (by feeding, playing, walking).

The ADA is careful to distinguish service animals from other kinds of domesticated animals. They’re legally different from emotional support animals (available with a doctor’s prescription, sometimes seen in “no-pets-allowed” spaces); therapy animals (often seen in nursing homes and rehab or other facilities to provide comfort and connection) and household pets. 

Technically, a service animal is considered “medical equipment.” The vast majority of service animals are dogs, though some are members of other species. At Hope Haven, the Discovery School allows service animals on campus if needed by the student.

Is a service animal a good choice for your child?

Not all children with disabilities are good candidates for a service animal. Some issues to explore:

• Eligibility: Not all children with special needs qualify for a service animal. Generally, the child must have a disability that limits their ability to perform one or more activities of daily living (ADL) without help. These include self-care activities like brushing teeth, skin and hair care, bathing, dressing, etc.

• Age: the child should be old enough (about 12 or older) to work with and care for the animal. If younger children are present, they should be comfortable with the animal without confusing it with a family pet.

• Training: Just as service animals are highly trained, the child may also need to undergo training in the proper ways to manage and care for their new partner. 

• Space: the living environment should be able to accommodate the service animal and its needs. A home inspection may also be required.

• Commitment: Bringing a service animal into the family is a long-term commitment. Though highly trained, the animal has emotional needs of its own that will require consistent attention from the child and other family members. 

• Accommodation: Under ADA rules, service animals must be allowed to travel with their assigned human, including inside spaces where other animals are forbidden or discouraged. Schools, offices, theatres and other facilities should be alerted in advance. 

• Cost: The cost of a fully-trained service dog maxes out at about $20,000. Fortunately, numerous nonprofit organizations and programs exist to help defray the cost.

If you think a service animal is right for your child, your first step should be to ask the child’s primary care physician, who can guide your family on ways to start the application process.

Decoding dyslexia

DECODING DYSLEXIA

First recognized in the late 1800s, dyslexia is a reading disorder that makes it difficult for people to process letters into sounds and words—a skill sometimes called reading fluency. Dyslexia affects about 15 percent of people in the United States and is found in all societies globally. 

Though it’s first noticed in childhood (because that’s when most people first learn to read), dyslexia is a life-long condition; people learn skills to work around it. It occurs among people who speak and read all languages (including those that don’t use the western alphabet), in locations on all continents. 

Research has found a statistical correlation between dyslexia and certain learning disabilities, especially Attention Deficit Hyperactivity Disorder (ADHD). That doesn’t mean one condition causes the other. It just means that they sometimes co-occur: a person diagnosed with dyslexia might be also be diagnosed with a learning disability.

What dyslexia is—and isn’t

Dyslexia is widely misunderstood—and sometimes misdiagnosed. People with dyslexia might be wrongly described initially as having:

• poor vision

• low intelligence

• laziness

• bad upbringing

• lack of motivation

• exposure to environmental hazards like lead poisoning

Because it affects a basic skill, reading fluency, dyslexia can be mistaken for other problems associated with reading deficits. Like comprehension, understanding, spelling, math and writing. 

Diagnosing dyslexia

The only way to get a definitive diagnosis is with a professional evaluation in a medical or educational setting. If you’re concerned that someone might be dyslexic, try this tip with someone who has trouble understanding a sentence they read on a page: Try reading the same sentence to them out loud. If they understand the same sentence in spoken form, it’s worth evaluating. 

As children age, the signs of possible dyslexia may progress. In preschoolers, signs might include:

• mispronouncing words

• problems following step-by-step instructions 

• trouble learning rhyming patterns like poems and song lyrics

• trouble with sequences of letters or numbers

• using “wiggle words” for objects they know (e.g., calling a baseball a “thing”)

In grade school, signs can include:

• avoiding reading whenever possible

• confusion about the sounds of individual letters

• forgetting how to spell familiar words correctly

• not pronouncing conjunctions and prepositions when reading aloud

• repeating mistakes that involve transposing letters, numbers or words

• struggling to break down individual sounds or syllables contained in a word

• trouble pronouncing words they already know—or sounding out words that are unfamiliar

For teens and adults, look for these signs:

• forgetting common online abbreviations like lol

• inconsistent misspelling (getting it right and wrong in the same document)

• needing extra time to complete a task that involves reading

• not understanding basic elements of language like grammar or sentence construction

• struggling to remember words they intend to use

• trouble with expressions, idioms or puns 

What causes dyslexia?

Science lacks a single conclusive answer, but a few correlations are emerging. Among them:

• Genetics: Dyslexia is more common in children whose sibling(s) and/or parents have it. 

• Brain activity: When researchers scanned the brains of children with dyslexia, they noticed certain differences compared to brain scans of non-dyslexic children. Those differences centered in the areas where the brain processes what words sound like and what written words look like.

 Treating dyslexia

There’s no medication or magic bullet to “cure” dyslexia. But it’s possible to re-train the brain to compensate for the challenges the condition creates. It’s a painstaking process that requires support from educators, family members, tutors and therapists. Many schools, including The Discovery School, offer proven accommodations that support students with dyslexia, so they can achieve their full potential. Accommodations include:

• large-print printed material

• partnering with another student

• text-to-speech and speech-to-text technology

• visual cues to keep eyes aligned on text

Dyslexia doesn’t have to be debilitating and, with practice and patience, can often be reduced to a mere inconvenience. Children who have been diagnosed with dyslexia are in good company. Famous people who have overcome dyslexia include novelist John Irving, director Steven Spielberg, business leader Charles Schwab, entrepreneur Richard Branson, political leader Gavin Newsom, designer Tommy Hilfiger, and entertainers Whoopi Goldberg, Goldie Hawn, Octavia Spencer, Billy Bob Thornton and Loretta Young.

For more on getting someone evaluated for dyslexia or arranging for tutoring services, call us at 904-346-5100.

ADHD AND ASD—HOW TO TELL THE DIFFERENCE

ADHD AND ASD—HOW TO TELL THE DIFFERENCE 

To even the most highly trained observer, someone diagnosed with autism (known as autism spectrum disorder, or ASD) can behave in ways that appear similar to someone with Attention Deficit Hyperactivity Disorder (ADHD). And if it’s not an easy call for a behavioral specialist, it’s even harder for a non-professional to tell the difference.   

While similarities abound, there are meaningful differences. And it’s important to make the distinction accurately. Because, as with most other disorders (physical and cognitive), treatment strategies for ASD and ADHD differ. Complicating matters a little further, ASD and ADHD can occur together. 

ADHD and ASD are both classified as neurodevelopmental conditions. Expect to see some overlap in behavior from people with either diagnosis, or both. Some behaviors are common between them: 

• being fidgety or constantly on the move

• sensitivity about someone invading their personal space

• struggling to read and respond appropriately to social cues, especially non-verbal ones

• experiencing meltdowns or tantrums when frustrated

Despite these similarities, the two conditions present differences in terms of observable signs, social considerations and treatment options.

People with ADHD may:

• be distracted, disorganized or impatient 

• forget important information or act as if they’re not listening

• behave impulsively, roughly or in ways that suggest they don't fully understand consequences of their actions

People with ASD are likely to:

• avoid visual or physical contact with others

• be slow to develop speech (if at all), while others may use language skillfully

• take comfort in routine

• react negatively to disruptions, and may self-soothe with rocking and other unusual body movement

• have trouble with empathy, expressing and understanding feelings, and recognizing dangers

• have unusually strong reactions to specific sensory stimuli

People with both conditions often face social consequences from others outside the home, based on their behaviors. 

People with ADHD may:

• have trouble forming and retaining friendships because it’s hard for them to understand and follow social behavioral norms

• get into trouble with teachers and other authority figures, who might misinterpret the reasons for problem behavior. This, in turn, can leave the individual with a negative self-image and prevent them from performing academically.

People on the autism spectrum often: 

• have trouble understanding the dynamics of social relationships and may find them intimidating. This occurs partly because of communication challenges, especially those that involve nonverbal cues like facial expressions and tone of voice. 

• face teasing from peers when feeling frustrated or overwhelmed because of their self-soothing behaviors like rocking and arm-flapping

Treatment options

Professionals in the medical and mental health communities have a variety of strategies for treating people with both conditions and helping them moderate some of the challenges they face.

There are various medications available to help people with ADHD focus their attention more effectively, which often makes the condition more manageable and helps people function more comfortably in society. Cognitive behavioral therapy can also help overcome anxiety and the perception of learning differences.

Because ASD represents a wide range of signs, symptoms and diagnoses, treatment modalities can vary depending on the person’s individual challenges. Options might include early intervention services, training in social and other “soft” skills, sensory integration therapy, and speech and language therapy. If there’s a co-occurring diagnosis like anxiety, medications can also help. 

How families can help

Families play a large role in making life easier for people diagnosed with ADHD, ASD or both. The first rule of thumb, regardless of diagnosis, is: always coordinate with the person’s professional care team (i.e., doctors, therapists, and teachers). 

ADHD

• Make sure the person knows the behavioral expectations and rules in your household.

• Provide structure by developing and repeating daily routines.

• Divide instructions into small, manageable tasks.

• Promote visual aids to help the person stay organized, Checklists are great for this. 

• Build mental health breaks into periods of concentration.

• Set aside a separate work area for homework.

• Provide a heads-up before scheduling one-off activities that disrupt the person’s established routine.

ASD

• Be clear with the behaviors you expect from the person.

• Provide structure by developing and repeating daily routines.

• Split up complex tasks (like doing the dishes) into small components that can be more easily achieved.

• Plan on occasional tantrums and frustration, so you can deal with them more calmly.

• Help the person manage social interactions by practicing scripts that are easy to remember.

 For more on the differences and similarities between ADHD and ASD, contact us at 904-346-5100. We offer evaluations and therapies to steer families toward proven programs for making the most of a child’s potential. Not sure how to get help for someone with special needs? Our Center for Educational Advocacy can help you maximize the resources available.

Celebrating the Holidays

Celebrating the Holidays

For many, the holidays are a time of joy and wonder, a time when even adults get in touch with their inner child. For some children who have special needs, though, the same season can also be triggering, confusing and downright intimidating. If you have kids with special needs, you’ve probably experienced this duality, no matter what faith or secular tradition you might identify with.  

Fortunately, the holidays are not an either–or proposition. You can enjoy the best aspects of the season in ways that bring joy to everyone—including the ones who experience the excitement through a different lens. The majesty and magic just take a little extra planning. Consider these ways to make the season brighter—in an inclusive way:

• Do a little stage-managing. If attending or hosting an event, consider spending a little time reviewing the timeline or sequence in advance with a child who has autism spectrum disorder (ASD) or attention deficit hyperactivity disorder (ADHD). That provides a framework for what will be happening and when. You might even want to give the child a cue or heads-up as your event moves from one segment to another. (“We’ll be sitting down for dinner in a few minutes.”). If the child is jazzed about a particular part of the event (opening presents, singing songs, even going home), a countdown can help. 

• A tree of their own. Or menorah or other holiday-themed symbol. Some children just want to decorate things their own way, even if it changes from year to year. If a child has trouble accepting decoration-by-committee (i.e., siblings and other family members), consider letting the child do their own thing on a separate, smaller version. A mini-tree or mini-menorah in their room, for example. The child can be as creative as they like. Just be careful to protect against mishaps if flames, ladders and other potential safety hazards are involved.  

• Design-your-own wrapping paper. Set aside a big roll of craft paper and some washable, quick-dry paint; add a creative child or two and let the magic happen by itself. Give the paper time to dry and—voilà!—custom paper to wrap presents from the child to family members, teachers and anyone else. It’s a great way to promote harmless creative play, self-expression and a sense of accomplishment.

• Easy-open presents. For anyone giving presents to a child with special needs, it’s a good idea to think in terms of easy unwrapping. Because complex packaging can be challenging for someone who has deficits with sensory input or motor skills. That’s not to say the presentation can’t be beautiful. But ask people to use less tape, less hard-to-open bubble packaging, and keep window dressing like ribbons, boxes and bows to a minimum. A simple decorative gift bag is an easy option.

• Have a Plan B. If the stress of a holiday gathering might be more than a child can manage, bring along some items the child will find comforting. Perhaps a favorite game, snack, toy or clothing item. If it has the power to calm the child down at home, don’t hesitate to deploy it during the holidays.

• Manage expectations of family members. Behavior that’s perfectly normal in your immediate family may seem like it’s coming out of left field to someone who is unfamiliar with kids who have special needs. So if you’ll be spending holiday time with someone who doesn’t know the child well (an out-of-town relative, for example), a respectful heads-up helps everyone feel more comfortable. This advice works both ways: If Uncle Bob has behavioral quirks of his own, it may be helpful to let your child know, discreetly, what to expect.

• More accessible Santas: If Santa is part of your tradition, a child with special needs might not react the same way as a more mainstream kid. That’s especially true for kids with ASD and ADHD, as well as those with sensory deficits and development issues. In recent years, the Santa industry has evolved, and many shopping and community venues have developed work-arounds that accommodate kids with special needs. Some places have special hours set aside to help you avoid crowds. Some Santas even make house calls. Contact your go-to local Santa venue—a mall, community center or other traditional location—to explore the options in your area. 

• Sit strategically. For audience-like settings (think religious services, holiday movies, Nutcracker performances), allow for the possibility that your child with special needs might be ready to leave sooner and with less warning than others. So choose seating that lets you experience the spectacle while still facilitating a hasty exit if necessary: on the aisle, near the back.

 For Hope Haven services that address the unique needs of children with special needs, contact us at 904-346-5100. 

Keeping kids organized

Keeping kids organized 

Being organized is not a talent you’re born with. It’s a mindset that helps people minimize chaos in their lives. It takes effort, even after it becomes second-nature. Many people wish they, or others, could be better organized. While well-organized people don’t automatically sail effortlessly through life, they do seem to have an easier time with the details. They accomplish more, and more efficiently, than their less-organized peers.

For that reason alone, organizational skills are worth cultivating in a child. Especially if the child already has cognitive or physical challenges to contend with. Approaching problems and tasks in an organized way can enrich a child’s life in the short and long terms. Scholastically and at home, even a little mastery of organizational thinking can mean greater confidence, higher-quality work, deeper learning, more productivity, pride and independence—as well as less need to retrace steps, fewer do-overs, less searching for lost stuff and less frustration.

Some children have their own level of tolerance for a messy life. Once that level is reached, they swing into action and clean their room or sort through their backpack without prompting. For them, disorganization can be self-regulating. For others, disorganization might trace back to a specific cause. For example, children with Attention Deficit Hyperactivity Disorder (ADHD) often seem disorganized. So do many people on the autism spectrum. Or the issue might stem from medications, trauma, lack of sleep, stress, anxiety or other causes. 

In some cases, the underlying issue is about executive function (EF), a clinical term that relates to the complexities around planning, goal setting, organized thinking, time management and similar skill sets. Whatever the cause, a child with an EF deficit may have chronic trouble getting and staying organized. 

But be careful. An EF deficit, which can and should be addressed, can look similar to simple irresponsibility or lack of self-discipline. How can you distinguish between the two? Look for recurring patterns like these:

• Difficulty creating focused narratives (i.e., a story or joke) in a logical sequence

• Forgetting to bring needed items to or from school—including school-related as well as personal items

• Neglecting to gather components needed to complete a task

• Scattering possessions without returning them to their proper place

• Trouble with multi-tasking

Consider these tips for helping a child develop better organization skills:

• Keep it manageable. Reduce larger goals into bite-sized pieces, so the child doesn’t feel overwhelmed by the sheer volume of new habits they’re trying to learn. Checklists and deadlines can help with this.

• Pay attention to sequencing. Sometimes, staying organized is about the order you do things—not just the individual sub-tasks.

• Model the right behavior. Show by example how to break tasks into a series of organized behaviors. And talk it through while you’re doing it. As an example, think about the separate tasks involved in unloading groceries: carrying the bags inside, locking the empty vehicle, separating items for the freezer, refrigerator or pantry, closing doors when you’re finished, etc. 

• Be consistent. If you focus on correcting a particular pattern or behavior on Monday, don’t let it slide on Wednesday. And be just as consistent when praising a child for demonstrating new organized behaviors.

• Be supportive. The child is not the problem. The disorganized behavior is. Explain the benefits of a more organized life in terms the child relates to. Try to build small goal-oriented victories into your plan; celebrate those so the child can experience incremental successes.

• Enlist help from teachers and family members. Children learn more effectively when they experience the same messaging about organization at home and at school.

If you’re concerned about a child’s lack of organization, Hope Haven can help with testing that can identify the cause(s) and treatment options. To learn more or schedule a virtual or in-person visit, call us at (904) 346-5100.

Different, not different

Different, not different 

Kids are born empathetic. They’re hard-wired to relate to another person’s experience—and to notice similarities and differences in a nanosecond. They’re also born without filters. They need to be taught how, why and when to regulate their behavior in non-hurtful ways. Add a physical, emotional or developmental difference to the mix, and things can get complicated. 

How does a child who’s outside the norm navigate the experience of being different? And how does a child who’s more mainstream navigate the experience of having a friend who’s different?

The simplest and broadest answer relates to empathy: walking in the other person’s shoes, seeing things from the other person’s perspective. It’s a subset of the golden rule, really. How would you feel if it happened to you? If you’re a mainstream person, an empathetic mindset helps you focus on being the best possible ally to a person with special needs. And that’s a great goal to have. 

Consider these strategies for understanding the needs of kids who are different:

• See the bigger picture. We all have challenges to overcome; that’s part of life. People with physical or mental differences aren’t defined by their limitations. They have hopes, dreams, strengths and weaknesses, just like anybody else. Focus on those qualities, on the things they have in common with you, not the ways they differ from you.

• Acknowledge and move on. You don’t have to avert your eyes or avoid someone with challenges. If someone’s differences make you feel awkward (perfectly understandable), don’t try to soothe your discomfort by commenting or joking about it. Like everyone else, people with disabilities just want to be acknowledged.

• Be helpful. Someone who uses a wheelchair relates best to you if you can position yourself at the same eye level. You would too. Similarly, someone with a stutter doesn’t need to have it pointed out when they get stuck. Wait patiently without prompting, suggesting or commenting.

• Respect people’s independence. We all value our ability to manage on our own. No matter how noble your intention, don’t assume someone with an impairment needs or wants your help. They may, but it’s better to ask first. It’s not an insult if they decline the offer.

• Invite the person to join you in social situations. People with differences may or may not feel excluded. If someone is sitting alone in the cafeteria (a classic example), invite them to join you. Or ask if you can sit with them. Give them the option. Maybe they’re waiting for someone else. Again, if they decline, be OK with that—without seeking an explanation. You’re an ally just for asking.

• Speak to the person, not about them. In social settings, avoid pointing, staring or treating someone as if they’re not there—even inadvertently. Include them. We all like to feel recognized; nobody wants to feel like an oddity. 

• Be respectfully curious, but not intrusive. If a person wants to talk more about their challenges, they’ll invite that conversation. Take your cue from them. If they do, feel free to be inquisitive. But it’s disrespectful to ask someone, unprompted, for details about their medical condition. 

• Give a heads-up. Try not to startle people who have sensory impairments. For someone who’s visually challenged, speak as you approach; if the person is hearing-impaired, let them see you before you initiate a conversation. 

• Avoid touching the equipment. Think of assistive technology as an extension of a person’s body. Someone who depends on a device—a walker or wheelchair, an audio or visual aid, for example—may be sensitive about the equipment that helps them get through the day. Respect that preference and avoid touching or moving a device unless the person asks specifically. 

We’re all different and we deserve to have those differences respected. When interacting with a person who has physical or emotional challenges, switch places with them in your imagination. To be an ally, let empathy guide your behavior. You may find you have more in common that you realize. Because people just want to fit in.

Employment options for young adults with special needs

Employment options for young adults with special needs

Transitioning from adolescence to adulthood is no easy task for anyone. But for young adults who have special needs, it’s even more challenging. The good news: There are formal systems and programs in place to help students with special needs figure out next steps and access resources after high school. These systems can make the difference between living with special needs and thriving despite them.

If your child has an Individualized Education Program (IEP), they’re entitled to a formal, methodical process called transition planning. The process helps a student determine which course to follow as they seek an independent, financially self-sufficient life, or the closest possible alternative. 

Under the Individuals with Disabilities and Education Act (IDEA), schools are required to begin transition planning by the time the student reaches age 16. The planning includes input from school administrators, parents/guardians and outside professionals (such as counselors, employment specialists and others). To the greatest possible extent, transition planning is an effort led by the students themselves.  

The transition plan typically focuses on the longer-term postsecondary goals (life after high school) as well as the services that will be needed to help the student accomplish their transition. 

Postsecondary goals

Four areas of postsecondary goals are addressed as part of the transition plan, including:

• Independent living, along with any assistive technologies required

• Vocational training, including instruction needed to learn a trade

•  Postsecondary education, such as undergraduate and advanced college degrees in the student’s chosen academic field

• Employment, including the process of securing and maintaining a permanent full-time job

The transition team members work for and with the student to develop specific, customized and realistic goals in these areas. To be included in the transition plan, the postsecondary goals must be more than aspirational (“When I graduate, I want to help people.”). Instead, they should meet the criteria often seen in business management; they should be SMART goals, that is: specific, measurable, attainable, results-oriented and time-bound.

Transition goals

A separate set of goals spells out the available services the person will rely on as they pursue these established postsecondary goals. The needed services will be as highly personalized as other elements of the plan, and they fall into discrete categories, including:

• Instruction, which includes any continuing formal education and training after graduation

• Community experiences, including participation in volunteer and similar activities to help the person establish a permanent place as a member of the local community

•  College and career counseling, providing ongoing specific guidance to help the person pursue their educational goals efficiently.

• Activities of Daily Living (ADL), including any ongoing help, if needed, with bathing, dressing, toileting, transferring, continence and feeding.

Over time, the person’s goals will evolve, and so will the transition-related resources needed to help them. For this reason, the transition team should revisit the plan periodically to ensure alignment of goals with real life.

By establishing a formal process for transitioning to adulthood after high school, this system helps ensure that students with different needs get a chance to live a life of independence and fulfillment. It levels the playing field and serves as a dependable ongoing resource. For more about the extensive employment and transition services available at Hope Haven, or to arrange a tour, call us at 904-346-5100.