Topic: For Families & Caregivers

The FACES Parent Network is designed to connect parents that have experienced similar issues when dealing with a child and/or adult who suffers from epilepsy or seizures. The connections FACES builds between parents are generally through phone and email. Whether it’s support for the hospitalization process, or finding educational or social support services, the added benefit of speaking to another parent that has lived through this experience can be quite valuable. Though they are not trained to provide medical advice or professional counseling, FACES support parents are trained to provide a safe listening environment to parents.

Visit the FACES Parent Network in order to find resources for you and your child, as well as information for how to work with the organization. FACES (Finding A Cure for Epilepsy and Seizures) is an organization affiliated with the NYU Comprehensive Epilepsy Center and NYU Langone Health. It is dedicated to building a community that will support people with epilepsy and their families.

Cerebral Palsy: A Complete Guide for Caregiving by Freeman Miller, MD, Steven J. Bachrach, MD, and The Cerebral Palsy Center at the Alfred I. duPont Hospital for Children, is a resource guide for parents and caregivers of children with cerebral palsy. As experts in the field, the authors provide information about all aspects of child rearing, education, and treatment of Cerebral Palsy. The book also offers insight into dealing with the financial hardships of treating Cerebral Palsy, and helping young people with the disease prepare for independence.

This resource guide contains three parts:

1. Cerebral Palsy Handbook: Information on cerebral palsy (including secondary conditions) and the challenges of living with this condition across the lifespan.
2. Caregiving Techniques: Information regarding assistive devices for mobility (i.e. stander, walkers, gait trainers, braces) to medical care including nutrition, oral care and toilet training.
3. Cerebral Palsy Encyclopedia: Descriptions of medical terminology, related disorders, surgery and therapy.

Resource Links

• Buy on Amazon

How can a school psychological consultant help students come to recognize themselves as both “different” and “able”? What are the steps we school psychological consultants take to help struggling students?

School is often the first place where students show learning and/or emotional interferences. Careful behavioral observation by a teacher and a mental health professional are vital first steps in this process. These specific observations provide the raw material for any professional referrals and/or modifications of the teaching methodology to enhance learning by the student. It is often necessary, as a next procedural step, to collaborate with the child’s parents, and to ultimately make an outside professional referral for an in depth and evaluative study of the student and of the interferences that are making learning more difficult for the student.

Some schools may be equipped to provide such diagnostic evaluation in house, and if so, an outside referral may not be necessary. The careful and systematic observations of a student and their academic record should dictate the referral. This referral process must include the parents working in concert with school personnel, and be the seedbed for a support network that includes school personnel, parents, and appropriate outside professional resources. Depending upon their age, it may be appropriate to include the student in this referral process. Certainly, the professional doing the diagnostic work must explain to the student the purpose of the evaluative study, and parents need to explain this as well to their child at a level developmentally appropriate to the student.

Once the evaluative results are complete, the next step is the mutual sharing of the diagnostic picture with the parents, the school personnel, and as appropriate, with the student. Most vital in this process step are the remediation recommendations, which emerge from the results of the diagnostic evaluation. Here too, the unified efforts of the student, outside professional, school personnel, and the student are vital. As a first step, how these results are to be shared with the student, parents, and school personnel must be decided and then implemented. The school psychologist is the appropriate coordinator of these combined efforts. Based on the evaluative results, it may be within the purview of the school psychologist to make referrals, perhaps to a learning resource professional, psychotherapist, or to psychiatric consult for possible medication.

As the treatment plan is put into effect, it may well fall to the school psychologist to be the facilitator and coordinator. For example, periodic meetings and updates from a learning therapist to teachers will be vital. An outside psychotherapist must be communicating periodically as to the progress the student is making. Relevant alterations in school programming may be necessary in order to maximize the efficiency of the treatment plan.

This is a continuing process, with the sharing of diagnostic and treatment work during the academic year, and most vitally, from one academic year to the next. In fact, the selection and assignment of new teacher(s) for the coming academic year must be a component of the treatment plan. The school psychologist is the repository of all of the data, both from inside and outside of the school, and thus a crucial player as the student moves on through the school environment. A school psychologist’s work can change a forgotten student’s experience into one of the strength and learning. We help our students learn that there is no shame in being different, and we help them learn how to be able.

Spooky Season is here!

Halloween is a time for imagination, fun, candy, and treats! Trick-or-treating is a very social time, there are many people in costumes, loud sounds, strobe lights, and lots of frights! Many people find this to be exciting, but it can overwhelm children with disabilities. The festivities can cause a sensory overload in children who are on the spectrum or have sensory processing disorder. Children who have a physical disability may have a hard time accessing homes for candy. Halloween can also cause a lot of anxiety for some children. As a community, there are a few things we can do to make a more inclusive Halloween.

General Tips

• Make sure children are always supervised. If going in a large group, use the buddy system!
• Only cross at the crosswalks and make sure you have the light, there are many more drivers out!
• Never enter anyone’s house, for any reason!
• Approach houses that are decorated and well lit, stay away from houses that have all the lights off. This is usually a sign nobody is home or wants to be bothered.
• Only eat wrapped candy!
• If you are giving candy out be mindful- long driveways or many steps can make it harder for children with physical disabilities to access your home.

Costumes

The biggest question on Halloween is what to dress up as. Answering this question may not be simple for everyone; children who have a sensory processing disorder may have a hard time finding a comfortable costume. This means some children may not have a traditional costume, since many of them can be constricting, too tight, itchy, and unbearable. Costumes made from soft materials make children more comfortable while walking around.

Blue Bucket Project

Blue Buckets for Halloween is a project that was started in 2019. The aim is to bring awareness to challenges that individuals who are on the spectrum might face on Halloween. Some children may be non-verbal, and many times it is perceived as being rude when not saying “trick-or-treat” or “thank you”. Other children may not have a costume on, make eye contact, and they may be scared when approaching homes for candy. Pay attention to anyone with a blue pumpkin and make sure to be inviting and inclusive. The Blue Pumpkin Project helps give independence to children so they can enjoy a Happy Halloween.

Allergy/Food Concerns

Many children have allergy or food restrictions which can make trick-or-treating disheartening. The Food Allergy Research and Education (FARE)’s Teal Pumpkin Project helps ensure that all children are able to go trick or treating. To participate in the Teal Pumpkin Project, place a teal colored pumpkin in front of your house. This indicates to families you have non-edible treats to give out. There are many options instead of candy.

• Stickers
• Pencils
• Erasers
• Mini Notebooks
• Glow Sticks
• Bubbles
• Bookmarks
• Key chains

Halloween Night Alternatives

Trick-or-treating can be very overwhelming for some, but that does not mean Halloween cannot be fun! Instead of wearing costumes and trick-or-treating, plan a day filled of fun Halloween related activities. Being outside, breathing in the crisp autumn air is really the best way to spend Halloween.

Pumpkin Picking/Apple Picking- Going pumpkin or apple picking are traditional autumn activities that never get old! Decorating and carving the pumpkins is a fun activity to do when getting home. Playing with the pumpkin seeds can also be a great sensory activity!

Boo-Bucket- Get a cute, spooky bucket and fill it with a bunch of treats and goodies!

Movie Night- Watch a fun Halloween movie, dress up, and have some snacks.

Arts & Crafts- Halloween is not complete without doing some arts & crafts! Here are some coloring pages, sensory activities and crafts that everyone can enjoy doing!

Editor’s Note: We are grateful to Ann D. Jablon, PhD, CCC-SLP, Professor Emerita, Marymount Manhattan College, who produced this resource for us.

May is Better Hearing and Speech Month. Speech-language pathologists (SLPs) and audiologists are the professionals who provide services for children and adults who have communication disorders. Each May, SLPs and audiologists organize events and distribute information to raise awareness of communication disorders and awareness of the professional support available for individuals who face speaking, listening, understanding, reading, writing, and hearing challenges. Communication disorders can affect anyone at any age. The following information will focus on concerns regarding young children from ages zero through three. I am happy to have the opportunity to share some information with you during this exceptionally challenging COVID-19 May.

What Is Early Intervention?

The goal of early intervention (EI) is to provide resources and services to infants, toddlers, and their families that address communication (speech, language, and hearing) development, as well as physical development, cognitive development, social and emotional development, and self-help development during the early years of life.

Children who are eligible to receive EI services may have specific conditions that are present at birth and place them at-risk for delays in any or all of these five areas of development. Children who have developmental delays or disabilities are at-risk for slow or different development of their speech, language, and hearing skills. Other children may acquire conditions after birth that can affect their development in any of these areas including the development or regression of their speech, language, and hearing skills. If these developmental conditions are present at birth, or are acquired during the early years of development, or parents/caregivers are concerned about their child’s development, families have the right to have their child evaluated. Support for children in developing the foundational skills in the areas of concern will help to lessen the effects of a delay or disability and help children catch up in their development.

Sometimes parents and caregivers may be reluctant to seek services because they fear a diagnosis or a label will cause their child to be perceived as less capable of succeeding in life. But understanding the diagnosis (i.e., the difficulties the child is having) is important for positive social and emotional development. Through the evaluation and treatment process, parents and caregivers will learn what behaviors to expect, how to participate in the child’s growth and development, and how to advocate for their child.

Here are two brief examples from my own experience regarding initial parental distress that changed over time. One father of a child with a developmental disability was attending a parent group that I was running in conjunction with a treatment program for three-year olds. Several weeks into the treatment, this dad reported, “I realize that I have to adjust, not lower, my expectations regarding the definition of success. He will be successful, but, perhaps, not in the particular way I had envisioned. This is a relief to me because I can support him in the way he needs me to.” In another case, a mother was opposed to having her child evaluated because she believed that seeking intervention meant that she valued him less. Through discussion and counseling with this mom and her family, she agreed to evaluation, treatment, and enrollment in a school setting specialized to address his language and learning difficulties. Recently the family contacted me when the young man graduated from college. Early identification and intervention are key factors in helping children reach their goals; EI is not a barrier to success.

During the New York City Pause due to COVID-19, the New York City Early Intervention Program is active as an essential service during this exceptional time. Below is the link to the site, which provides information about EI in New York City (and beyond). The site focuses on the importance of family involvement, not to supplant professional intervention, but to integrate family members into the support of their child’s development. There are simple, inexpensive activities that enhance the acquisition of speech and language skills that are based on the daily routines of the family and household objects (e.g., bath time, meal times, etc.), ensuring that no extra burden is placed on the family members, while ensuring that all members are working together toward their mutual goal. On this site there are many other links to important information that will help families to understand the processes and procedures of EI.

Speech-language pathologists and audiologists are important members of the EI team. As indicated above, children with developmental delays or disabilities often have communication delays or disorders. The American Speech-Language-Hearing Association “is the national professional, scientific, and credentialing association” for the professions of speech-language pathology and audiology. I have included three links to specific information on their website.

The first link, ASHA ProFind, helps you find a communication specialist in your area. If you have concerns about your child’s communication abilities (e.g., hearing, speaking, understanding, etc.), be sure to consult an SLP or audiologist.

The second link provides guidelines about communication development and indicators of atypical communication development. It is important to remember that children develop their skills at their own rate. Knowing the guidelines for typical communication development and the indicators of atypical communication development will help families recognize the signs of a possible speech, language, or hearing disorder so that they may seek help early. The site also has two additional links with helpful information, including particularly useful information about interacting with babies and preschool children in ways that will enhance their speech and language development.

The third link provides information on speech and language development through the elementary years, including important information on “Learning More Than One Language.” It is critical to understand that learning another language is a wonderful benefit and it is certainly not a language problem.

In summary, there are congenital and post-congenital conditions that place children at-risk for speech, language, and hearing disorders during their early developmental years (zero to three). Families with concerns about their child’s development should contact professionals who can help them determine the appropriate next steps. Speech-language pathologists and audiologists are a source of information and support for families with questions and concerns.

Resource Links

• NYC Early Intervention Program: information about EI in New York City
• ASHA ProFind: find a communication specialist in your area
• Guidelines about communication development and indicators of atypical communication development
• Information on speech and language development through the elementary years, including “Learning More Than One Language”

Dr. Jessi Sigander has a BA in Education, Masters in Curriculum and Instruction, and a PhD in Educational Leadership. She is the founder of the Brain Breakthrough, a company dedicated to assisting people with anxiety, trauma, concussions, dyslexia and/or reading issues with new approaches to modern medicine. Dr. Sigander’s passion for dyslexia started when her daughter, Ella, was diagnosed with the learning disorder in her elementary years.

Dr. Sigander also founded ACTION Parenting Community, which is a group of parents who seek holistic tools and support to address the challenges of parenting. Dr. Sigander also volunteers with the Oregon Branch of the International Dyslexia Association (ORBIDA). In August 2020, Dr. Sigander was featured in the Mom Owned Businesses (MOB) Spotlight on the MOB Nation Blog.

Interviewed by our Different & Able President and Founder, Alexandra Nicklas, Dr. Sigander discusses whole body wellness approaches and client services that the Brain Breakthrough offers, such as “Dyslexic for a Day.” Using a structured simulation, “Dyslexic for a Day” users can experience dyslexia for themselves, become educated on the disorder, and gain empathy for those who are challenged daily with it. Dr. Sigander is a future-thinker; as mom and a professional. She continues to advocate for dyslexia and discover more educational evidenced based approaches to extricate the mystery of dyslexia.

Resource Links

The Brain Break Through

During this time of educational inconsistencies, a vast number of children are now be educated at home with a distance learning approach to pedagogy. Often children, when uprooted from their normal day-to-day routine, start to carry additional stress, accept regression in learning patterns and practices, and begin to wonder about their futures. Today’s children need survive and thrive techniques. They need to be loved, listened to, supported, and have their posed questions answered, in a suitable manner of their age and/or level of understanding. Strategies need to be implemented for a child’s needs of structure, education, exercise, social contact, appropriate leisure time. Above all, children need to know that they are going to be okay.

Here are some strategies for the at-home student in your life:

• Create structure and use tools that help you stay organized. Make a routine for your child and stick to it every day. Definitive times for activities, a specific place for schoolwork to be completed each day, and a child-centered family schedule, that is easy to comprehend and age appropriate for your at-home learner. This schedule is also a bonus to regulate your child’s sleep patterns, as there is a set time each day for going to bed. Example: After 10:00am snack time, I complete my math lessons.
• Break tasks into manageable pieces. Example: If your child does not enjoy reading, try reading a chapter, taking a “mind break” (something that does not involve the activity your child was previously doing), challenge your child to a quick 30 second jumping jacks competition, and then start reading again. Remind your child to be proud of their accomplishments, even the small ones.
• Simplify and organize your child’s life. Make sure that your child has everything they need to begin working from their designated learning spot. Example: Having pencils sharpened and plenty of paper, easily accessible and within their reach, can simplify their at-home school day.
• Limit distractions. As difficult as this may be in these challenging times, children need a learning space that is free from distractions. Example: Obtain two sturdy folders and staple them together, making them into one large folder partition. Your child can work behind the partition, but they can also look up to ask you a question, if need be. As a parent or guardian that is working beside their child or children, mimic this less distractive workspace. This will allow your child to view you as also working/ learning in your own space, which is similar to that of a classmate seated next to them.
• Encourage exercise and let peer groups know when your available. Example: Plan a social distancing approved activity, such as a foot race, an obstacle course, or a scavenger hunt with another family or a few classmates. Remember this is fun and promotes a healthy active lifestyle, which children crave. Reminder: Keep the rules light, encourage positive feedback, be supportive, and have fun!

There are many organizations that exist to help others navigate their or their loved one’s autism diagnosis. Here is a short list of organizations that are specifically designed to help and bring awareness to the autism community.

• Sparta
  • SPARTA Inc. is a 501 (c)3 non-profit organization that provides Autism treatments and conducts research in the home and at center-based settings, as well as providing parent training, for kids diagnosed with autism spectrum disorder living in underserved areas, both in the USA and in Greece.
• Autism Speaks
  • Autism Speaks is enhancing lives today and accelerating a spectrum of solutions for tomorrow. We are dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families.
• Peace of Heart
  • Peace of Heart Community’s vision is to create an environment where a meaningFULLife for persons with autism can be realized by fostering an atmosphere of love, happiness, and belonging where all life is valued, voices are heard, and talents are developed to make a difference in the world.
• Autistic Self Advocacy Network (ASAN)
  • The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. We work to empower autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!
• Autism Society
  • For 57 years and counting, the Autism Society, including our nationwide network of affiliates, connects people to the resources they need through education, advocacy, support, information and referral, and community programming.
• Autism Research Institute
  • To support the health and well-being of people affected by autism through innovative, impactful research and education.
• Simons Foundation
  • The Simons Foundation’s support of science takes two forms: We support research by making grants to individual investigators and their projects through academic institutions, and, with the launch of the Flatiron Institute in 2016, we now conduct scientific research in-house, supporting teams of top computational scientists.
• Association for Science in Autism Treatment
  • The Association for Science in Autism Treatment (ASAT) was established in 1998 as a not-for-profit organization of parents and professionals committed to improving the education, treatment, and care of people with autism. With a mission to promote science-based treatments for people with autism that are safe and effective, ASAT disseminates accurate, timely, and scientifically sound information while advocating for the use of scientific methods to guide decision-making and to combat unsubstantiated, inaccurate, and false information about autism and its treatment.
• National Autism Association
  • The mission of the National Autism Association is to respond to the most urgent needs of the autism community, providing real help and hope so that all affected can reach their full potential. NAA achieves its mission through six main areas: advocacy, research, education, direct tools, thoughtful awareness, and hope.