Advice FROM Siblings of Special-Needs Kids

Natalie was just four when her brother Patrick, younger by two years, was diagnosed with autism. Even as a young girl, it was a blow for her. “I remember when he was born; it was so exciting. I was going to have a sibling!” she said. She soon realized, however, he wasn’t going to be a traditional brother like her friends had. “Why our family? Why us? Why me?” she asked.

Now, as a 22-year-old, Natalie accepts and cherishes her brother. But it took a long road to get there. “There are certain stages you go through.”

First, there was denial. She kept wishing the doctors were wrong or hoping he would have the kind of autism that doesn’t manifest itself so openly. As a child she used to draw fake, perfect families, hoping one day they would be real.

Then the anger. Her brother’s situation meant, she said, “you are not the most important person in your house. Your parents’ effort, and the people coming to your house, the therapist and the occupational therapist-all those people aren’t there for you, but for your brother.”

She would get frustrated that simple trips to the grocery involved stopping to tie shoes, crying, fits over which side of the car to sit on, complaints that the lights were too bright. She regularly thought about how unfair it all was.

Slowly, over many years, a shift occurred. She started seeing her brother not as a source of frustration, but as a unique person with his own strengths. “I looked at it from a different angle,” she said. “He’s an incredibly talented musician, and he has perfect pitch, and he can play the piano, he can play the drums, he is an excellent guitar player. When he started excelling at guitar, I realized I wasn’t dealing with a burden; he is an individual who is in some ways much more talented and much more capable than I am.”

Sibling challenges 

Siblings like Natalie are often deeply impacted by a brother or sister with special needs.

In addition to having anger and resentment, Natalie placed pressure on herself to be the perfect child to her parents. She hated softball and basketball but played them for years so her dad would have a team to coach and cheer for on the weekends. “I tried to really excel at sports because my father didn’t have a son who he could go outside and play catch with,” she said.

She wouldn’t ask her parents for a ride to the mall or $5 for ice cream because she didn’t want to be a burden on them in any way. Even now, she feels the pressure to be successful in her career (she works in sales for a tech startup) so she can one day support her parents and brother. She even graduated from college a semester early to get the money rolling in sooner.

Rache, a 17-year-old high school junior, felt embarrassed inviting friends over to her house after school in case there was an episode by her younger sister Sophie, who had a severe form of OCD. There were times, she remembers, “when I would get anxious when Sophie was anxious” If her sister was having a tantrum, she would run into Sophie’s room and take away the scissors so she couldn’t harm herself or others.

Rachel also felt an obligation to take care of her sister. “As her older sister I took it on as my responsibility. There are times when she calls me her mom because I act like it, and I want to help her. I want to do whatever I can to support her.” One of the scariest moments was when her sister attended a treatment center across the country. “I felt like I was in zero control of what was happening,” she said.

We asked older siblings of children with special needs to give advice on how to address some of these challenges. Here is what they told us:

Advice for parents 

Build a wide support system  

Laura, a 26-year-old advertising executive, has a younger brother who is 23 and has a form of autism that makes it hard for him to communicate. As one of four kids, she felt the best thing her parents did was create a wide support system for her autistic brother so the burden didn’t fall as much on the family.

“He had after school programs, he had teachers who came to our house during dinner time, he had a lot of support so that didn’t put as much pressure on us or my parents,” she said. “They were able to care for more kids,” she said. Aunts and uncles would also step in and help spread out the responsibility.

Be open with your children and include them in decision-making.

Parents often try to shield siblings from what is happening. Natalie says that approach is well-intentioned, but it can cause more harm than good. “You want to feel like a team,” she said. “You want to feel like you are in this together, because too often the parents feel like a team and you are siloed, so it’s just you by yourself. If you include your kids in the conversations and let them help you make decisions, it’s huge because you feel like it’s not just on you.”

Set aside special time for each of your children

Rachel feels that the most important thing for parents is to “just remind your kids that you are always there for them and maybe set aside time for siblings so they know they are still cared about and loved.” This can be a private vacation, a special activity once a week, or five minutes before bed. Your children will cherish this time, she added. “I took the time that I did get with my parents not as much for granted as I had previously.”

 Advice for siblings

Reach out to others

When she was younger, Natalie felt she was the only one in her situation, and that no one could possibly understand what she was going through. Once she got older and talked openly about it to friends, teachers, and boyfriends, she realized she was hardly alone. She even wrote an article about her challenges on a website and received thousands of responses.

“The more you hold it in, the worse it is,” she said. “When you put yourself out there, it’s scary—you don’t know what will happen. But you have to put yourself out there and find support and realize you aren’t by yourself.”

Laura agreed: “I can see that it can be isolating as a sibling,” she said. “I feel like the support network is very important for caring for someone with a disability. We especially need to reach out.”

Make special time for your sibling

The more siblings spend quality time with their brother or sister with special needs, the more they realize how remarkable that person is.

Laura realized how hard-working her brother was. “He is doing things all day and working all night, and he usually does it with a good attitude,” she said. “He’s taught me a lot.” She sets aside time to do special things with him so she can appreciate him more. He loves Aladdin, so she recently took him to see the musical on Broadway. They also regularly go to a theme park near the family home on Long Island.

Now that she can drive, Rachel likes to take her sister to Starbucks when she is getting frustrated with her schoolwork, to get a break. It’s a special time they can share, and it helps them grow closer and appreciate one another.

Make time for yourself

Many siblings feel guilty about wanting a break from their sibling with special needs, but getting time away is essential, said Rachel. “That was a major thing for me, and I had to step back at some points and have a break from it all. In the summer, especially, I get to be anxiety-free instead of worrying all the time. Just going out to dinner with my friends or going to see a movie helps.”

Focus on how your experiences have helped you

Looking back, Rachel realizes how having a sister with OCD made her the person she is today. She became more independent because she felt she couldn’t ask her parents, who were always so busy with her sister, things like how to solve a homework question. “I figured it out on my own,” she said.

She also thinks it made her a more aware and sensitive person. When her sister went into a treatment center she channeled her need to help into serving others. She “wasn’t able to do much,” she said, so “I took it upon myself to help others.” She joined J Teen leadership, a teen-led community service organization and soon started chairing it.

Laura believes having an autistic brother made her more curious and tolerant of people different than her. She spent a year in China teaching English, something she might not have done otherwise.

Natalie learned the life lesson of not measuring people against each other. “I think you are always comparing people to yourself,” she said, “And when you stop comparing someone to yourself and start thinking they are being the best person they can be, that’s when your eyes open and you are like, ‘Oh this makes sense and this is right and all is good.’ “

Effects of Parents’ Math Anxiety on Children’s Math Achievement

Previous research has established that when teachers are anxious about math, their students learn less math during the school year. The current study is the first to establish a link between parents’ and children’s math anxiety. These findings suggest that adults’ attitudes toward math can play an important role in children’s math achievement.

“We often don’t think about how important parents’ own attitudes are in determining their children’s academic achievement. But our work suggests that if a parent is walking around saying ‘Oh, I don’t like math’ or ‘This stuff makes me nervous,’ kids pick up on this messaging and it affects their success,” explained Beilock, professor in psychology.  “Math-anxious parents may be less effective in explaining math concepts to children, and may not respond well when children make a mistake or solve a problem in a novel way,” added Levine, the Rebecca Anne Boylan Professor of Education and Society in Psychology.

Four hundred and thirty-eight (n=438) first- and second-grade students and their primary caregivers participated in the study. Children were assessed in math achievement and math anxiety at both the beginning and end of the school year. As a control, the team also assessed reading achievement, which they found was not related to parents’ math anxiety.

Parents completed a questionnaire about their own nervousness and anxiety around math and how often they helped their children with math homework.  The researchers believe the link between parents’ math anxiety and children’s math performance stems more from math attitudes than genetics.

“Although it is possible that there is a genetic component to math anxiety,” the researchers wrote, “the fact that parents’ math anxiety negatively affected children only when they frequently helped them with math homework points to the need for interventions focused on both decreasing parents’ math anxiety and scaffolding their skills in homework help.”

Maloney said the study suggests that parent preparation is essential to effective math homework help. “We can’t just tell parents — especially those who are anxious about math — ‘Get involved,'” Maloney explained. “We need to develop better tools to teach parents how to most effectively help their children with math.”

A. Maloney, G. Ramirez, E. A. Gunderson, S. C. Levine, S. L. Beilock. Intergenerational Effects of Parents’ Math Anxiety on Children’s Math Achievement and Anxiety.Psychological Science, 2015

If You Want to Absorb New Information – JUST GO TO SLEEP

Kathy Rastle, Professor of Cognitive Psychology at Royal Holloway, said: “Teachers have long suspected that proper rest is critical for successful learning. Our research provides some experimental support for this notion.

Participants in our experiments were able to identify the hidden rule shortly after learning. However, it was not until they were tested a week after training that participants were able to use that rule to understand a totally new word from the fictional language when it was presented in a sentence.”

She added: “This result shows that the key processes that underpin long-term learning of general knowledge arise outside of the classroom, sometime after learning, and may be associated with brain processes that arise during sleep.”

The research, published in the journal Cognitive Psychology also found that participants needed time to consolidate this rule-based knowledge before being introduced to new words that did not follow the rule. If the exceptions were introduced during the initial vocabulary learning session, learners were unable to develop an understanding of the general rule.

The findings have important implications for language teaching in the classroom. It is not uncommon for teachers to introduce ‘tricky words’ or exceptions to the rule alongside rule-based examples when teaching children how to read phonetically. For example, children may be taught that that the rule for pronouncing CH applies to church, chest, and chess, but not to chef or chorus.

The research suggests exceptions should not be introduced until children have already consolidated the standard rule after a good night’s sleep, otherwise, they will not develop the necessary knowledge required.

Jakke Tamminen, Matthew H. Davis, Kathleen Rastle. From specific examples to general knowledge in language learning. Cognitive Psychology, 2015; 79: 1 

How Stress Impacts Learning and Behavior – FREE Webinar

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Children with Visual or Hearing Disabilities Can Now Access TV Programming

The U S Department of Education yesterday announced that thousands of children with visual or hearing disabilities may now access free on-demand children’s television programming.

Dozens of children’s and family TV episodes may now be viewed online featuring closed captioning and descriptions through our Accessible Television Portal project. Among the shows: “Ocean Mysteries,” “Magic School Bus,” “Bill Nye the Science Guy,” “Daniel Tiger’s Neighborhood,” “Expedition Wild” and “Peg + Cat.”

TO VIEW THE CONTENT:  teachers and school personnel, parents, and other professionals working with qualified students can visit www.dcmp.org  and apply for access to the portal.  The portal is part of the Department-funded Described and Captioned Media Program (DCMP). It includes video-on-demand content provided at no cost

Once approved, accessible content can be used with, and by, students in the classroom and at home via the Web, mobile phones and tablets, mobile apps, and set-top boxes. The portal itself is fully accessible to those with sensory impairments. Children with disabilities can locate any featured program without difficulty.

STRESSED KIDS – What Do They Do?

We asked kids to tell us what things cause them the most stress. Kids said that they were stressed out the most by: grades, school, and homework (36%); family (32%); and friends, peers, gossip, and teasing (21%).

These are the coping strategies kids said they use the most (they could give more than one response):

• 52% play or do something active
• 44% listen to music
• 42% watch TV or play a video game
• 30% talk to a friend
• 29% try not to think about it
• 28% try to work things out
• 26% eat something
• 23% lose their temper
• 22% talk to a parent
• 11% cry

About 25% of the kids we surveyed said that when they are upset, they take it out on themselves, either by banging their heads against something, hitting or biting themselves, or doing something else to hurt themselves. These kids also were more likely to have other unhealthy coping strategies, such as eating, losing their tempers, and keeping problems to themselves.

The idea that kids would do things to try to harm themselves may be shocking to parents. But for some kids, feelings of stress, frustration, helplessness, hurt, or anger can be overwhelming. And without a way to express or release the feelings, a kid may feel like a volcano ready to erupt — or at least let off steam.

Sometimes, kids blame themselves when things go wrong. They might feel ashamed, embarrassed, or angry at themselves for the role they played in the situation. Hurting themselves may be a way to express the stress and blame themselves at the same time.

The poll also revealed important news for parents. Though talking to parents ranked eighth on the list of most popular coping methods, 75% of the kids surveyed said they want and need their parents’ help in times of trouble. When they’re stressed, they’d like their parents to talk with them, help them solve the problem, try to cheer them up, or just spend time together.

About the Poll

The national KidsPoll surveyed 875 9- to 13-year-old boys and girls regarding how they coped with stress. The KidsPoll is a collaboration of the Nemours Foundation/KidsHealth, the Department of Health Education and Recreation at Southern Illinois University — Carbondale, the National Association of Health Education Centers (NAHEC), and participating health education centers throughout the United States.

Special Needs Event Calendar

Special Needs Event Calendar

Great resource for families who have special needs.

You Don’t Have to Wait Until Your Child Starts School to GET HELP!

It’s never too early to get help for a child with developmental delays or learning difficulties. Your child must be at least 3 years old to qualify for an IEP.  But even before then, your child may be eligible for special education services.

What to Do If Your Child Is Under Age 3

From infancy until age 3, children can receive help through early intervention services. The Individuals with Disabilities Education Act (IDEA), a federal law, requires that every state provide early intervention. You don’t need a referral. You can request a free evaluation from your state’s early intervention services program.

If your child is found to have a disability or serious developmental delay, services such as speech therapy or occupational therapy will be provided in your home, at no cost to you.

If your child qualifies for these services, you’ll work with a team of educators to develop an Individualized Family Service Plan (IFSP) for your child. The IFSP is a legally binding document that specifies which services and supports the state will provide to your child.

Assistive Technology: Resource Roundup

An educator’s and parent’s guide to websites, blogs, articles, and videos that provide information and tools related to understanding, selecting, and assessing assistive technology and accessible instructional materials.

For Parents

For parents and families, the FCTD hosts a resource review database listing hundreds of assistive and instructional technology resources including books, articles, research, and other materials. Common Sense Media has an online resource and downloadable guide, “Power Up! Apps for Kids with Special Needs and Learning Differences.” Graphite, a service of Common Sense Media, also maintains a collection of reviews of Great Special Ed Apps and Sites recommended by educators and experts working with children with special needs and learning differences.

For Educators

As Matthew Lynch discusses in Education Week’s “Assistive Technology: A Necessity for Student Success,” there have been great strides in recent years to improve available technologies. To learn more about what’s available, there are several websites that provide information about specific technologies and guidance on finding appropriate tools. TechMatrix, funded through a grant by the U.S. Department of Education and maintained by the American Institutes for Research (AIR), is a searchable database of over 400 assistive and educational technology tools and resources. The products are searchable by content area, grade level, IDEA disability category, and the type of instructional support. TechMatrix also provides a useful consumer guide for school administrators looking to purchase assistive and learning technologies and aggregates research articles on the theory and practice of using technology to improve student learning.

Tips and Tools

Creating a “Least Restrictive Environment” with Mobile Devices, by Beth Holland (2013)

Holland of EdTechTeacher looks at how mobile devices can help create a “least restrictive environment,” not only for students with disabilities, but for everyone else as well.

Dictation Technology Will Change Writing Instruction, by Robert Rosenberger (2013)

Rosenberger, Assistant Professor of Philosophy at Georgia Institute of Technology’s School of Public Policy, offers a thoughtful examination of how dictation technology is likely to change the future of writing instruction.

Assistive Technology: Enhanced Learning for All, by Lisa Wahl (2003)

Assistive technology can help students with a range of disabilities to excel. In this article, Wahl provides several examples of how technology can be used to support the learning experiences of students with unique challenges.

Need-specific Resources

Sensory Impairments

Assistive Technology and the 1:1 Student, by Andrew Marcinek (2012)

Edutopia blogger Marcinek, in another story about Burlington High’s 1:1 program, describes one student’s easy use of the iPad as assistive technology.

Berberi’s Tools, by Alise Brann, Tracy Gray, Heidi Silver-Pacuilla (2008)

Brann, Gray, and Silver-Pacuilla discuss several of the technologies that Albano Berberi — a blind Advanced Placement computer science student, devoted gamer, and violin prodigy — uses throughout his day.

The Sound of Learning: Albano Berberi (2008)

In this video, see how assistive technology helps Albano Berberi, a blind computer science student and devoted gamer, to pursue his passions.

Out of Sight: Technology Helps Visually Impaired Students Thrive, by Sara Ring (2008)

Ring discusses the tools that make learning accessible for visually impaired students at one Brooklyn high school.

Cognitive Differences

Technology Can Improve Post-Secondary Outcomes for Students with Autism, by Dana Reinecke (2013)

Author Reinecke discusses how technology can improve post-secondary outcomes for students with autism, increasing their access to jobs and education.

Leaping Over Walls: With Technology Integration, the Sky’s the Limit, by Mason Barney (1998)

Barney, a college student, discusses how he has used various technology tools to help him overcome barriers caused by a learning disability.

Physical Challenges

Assistive Technology Makes a Difference for Lukas Bratcher (2005)

Thanks to some ingenious assistive technology, this high school student didn’t let a birth condition stifle his passion for music. He played euphonium in his school’s award-winning marching band from his wheelchair.

Disabled Bodies, Able Minds, by Diane Curtis (2005)

Assistive technology, including speech-generation devices and joystick technology, makes it possible for students with physical and mobility challenges to participate more fully in class and school activities.

How Assistive Technology Enables Dreams (2005)

From voice-activated software to customized laptops, tech is changing the way disabled students communicate, learn, and play.

Social Media

Twitter: #spedchat, #atchat, and #assistivetechnology

AT specialist Brian Wojcik curates resources shared on #atchat in #ATchat Weekly.

Articles and Blogs

“Beyond a Gadget: Google Glass is a Boon to Disabled,” from USA Today

“50 Popular iPad Apps For Struggling Readers & Writers,” from TeachThought

“Captioned Media: Literacy Support for Diverse Learners,” from Reading Rockets

“Free Audio Books and Why You Should Try Them,” from Scholastic Parents

“iPads Become Learning Tools for Students with Disabilities,” from Education Week

“iPads Help Late-Speaking Children with Autism Develop Language,” from Research News @Vanderbilt

“Matching Assistive Technology Tools to Individual Needs,” from GreatSchools

“Special E-Readers for People with Dyslexia,” from Education Week

“Supporting Students with Dyslexia: Tips, Tricks and Tech for Teachers,” from The Guardian

“The New Common Core State Standards Assessments: Building Awareness for Assistive Technology Specialists,” from Closing the Gap

“The White Cane as Technology,” from The Atlantic

Videos

AIM Simply Said from the National Center on Accessible Instructional Materials

Apps for Autism from CBS News

“I Can Soar” video playlist from PowerUp WHAT WORKS

Ron McCallum: How Technology Allowed Me to Read from TED Talks

The Case Against Assistive Technology from Don Johnston

Understanding Assistive Technology: Simply Said from the PACER Center

Organizations and Other Resources

AbleData

Accessibility in Education from Microsoft

Accessible Teaching Materials from Disability.gov

Assistive Technology Resource Guide (PDF) from OCALI

Assistive Technology from National Center for Learning Disabilities

Assistive Technology: An Overview from the IRIS Center, Peabody College Vanderbilt University

Considering Assistive Technology from the National Dissemination Center for Children with Disabilities

Hearing Assistive Technology from American Speech-Language-Hearing Association (ASHA)

Inclusion in the 21st-century Classroom: Differentiating with Technology from Learn NC

Special Education from Apple

Technology and Media Division of the Council for Exceptional Children

Simon Technology Center from the PACER Center

Technology from the Yale Center for Dyslexia & Creativity

Technology Resource List from National Federation of the Blind (NFB)

Web Accessibility Tips from the Association of Assistive Technology Act Programs

 Universal Design for Learning (UDL)

For information on the basics of universal design for learning (UDL), take a look at What is UDL? from the National Center on Universal Design for Learning. The role of technology in UDL is explored on their UDL and Technology page. UDL strategies do not replace the need for AT, but UDL and AT can be complementary. For a concise illustration of the relationship between UDL and AT, check out this handy chart, AT and UDL in Partnership, from Maryland Learning Links.

Digital Diversity: Engaging All Students in Education, by Grace Rubenstein (2006)

In this article, Rubenstein discusses how access-enhancing technology tools are not only useful for those with identified special needs; these tools can be a means of personalizing instruction for all learners.

We All Have Special Needs: Using Technology to Break Down Barriers, by George Lucas (2001)

Lucas discusses how technology can transform lives and help all people to overcome barriers and reach their full potential.

13 Of The Best Special Needs Apps For Students

1. See. Touch.Learn. Pro by Brain Parade is one app that can have many purposes, including creating your own lessons. The most important asset to this app is built-in flashcards with interactive features that can be customized by a speech therapist, teacher or parent. Having all the libraries available and the ability to add your own custom cards makes it a very powerful learning tool.

2. Pictello by Assistiveware offers a fun way to create and share talking photo albums and stories and is used by many teachers, students, families and children. It offers a fun way to create social stories and is used by many teachers, students, families and children.

3. Dragon Diction by Nuance Communication is a fabulous speech to text application.  To use it, students speak into the microphone and their speech is converted to text.  The accuracy is impressive, even with difficult words or background noise.  Students can use Dragon Dictation to compose notes, email messages, tell a story, or have an oral book report recorded.

4. The Social Express, by The Language Express, Inc, uses engaging scenarios to teach users, with high functioning Aspergers or other similar conditions, how to think about and manage social situations so that they are better prepared to develop meaningful social relationships and succeed in life.

5. My First AAC by Injini is is an inexpensive augmentative/alternative communication application for the iPad that is designed specifically for the younger set who have delayed speech or severe speech disorders. Intuitive and child-friendly, this app helps young children to communicate with others.

6. Conversation Builder Teen by Mobile Education Store; a teen version of the popular and award winning Conversation Builder app, older students learn when it is appropriate to introduce themselves, ask questions, make observations and change the subject of the conversation. They will also be exposed to sarcasm and how to respond when someone is bullying them or someone around them.

7. Phonics Genius by Alligator Apps is loaded with content. One of the best ways to rapidly learn how to speak, read, and recognize words is through phonic awareness. This app is specifically designed to help students recognize and distinguish words by sounds, it is one of the most comprehensive phonics apps available.

8. SoundLiteracy by 3D Literacy, LLC is the first iPad app that brings your letter tiles in to the 21st Century. It is being used in 15 countries across the globe and growing quickly! The app is incredibly useful, employing the Orton-Gillingham method to help students recognize the spellings of English phonemes.

9. Letter School, by Boreaal teaches letter formation in a rich aesthetically pleasing environment, it offers many ways for your child to practice letters, including upper and lower case letters, as well as numbers. Letter School forces the child to have the correct length and formation of the letters and works on the extinction of lazy letters, while making writing fun. The children are able to make the letters while being entertained, but not frustrated.

10. Social Quest by Smarty Ears will  have speech therapists, teachers, and parents engaging students in clever castle adventures while working on speech and language as well as social skills. This app is designed for older elementary, middle school, and high school-aged populations.  Actual photographs make the experience more real and reinforce concepts. Students will love their picture being in the House of Heroes.

11. P.O.V. – Spatial Reasoning Skills Development by Binary Labs helps develop spatial reasoning skills in kids and adults, spatial reasoning skills are the foundation of many important developmental and cognitive skills. P.O.V. is a set of 3 activities designed to teach spatial reasoning skills through fun, challenging, interactive activities. Players must think their way through the activities, which get increasingly difficult as each level is mastered. This app is designed for all learners age 8-18. Advanced 6-7 year olds may also benefit from using the app, as well as adults who are “directionally challenged.”

12. Speech With Milo by Doonan Speech Therapy is a series of nine speech apps to build language skills. They make their apps as interactive as possible, and they are designed for the child to be actively working with a parent or therapist. They also incorporate animation as much as possible so Milo demonstrates the word or skill that the child is working on, but does not detract from the focus of the skill.

13. i Get It! by I Get It, LLC are also a series of specialized apps, they offer two series of educational apps, the Identification Series and i-Seequence Series. These apps are designed to facilitate cognitive growth through building language skills.  The i Get It! apps are appropriate for typically developing children as well as children with special needs such as language impairments, autism, ADHD, and auditory processing disorders.