Parenting a child or children with special needs can be a struggle, but can also be incredibly emotionally rewarding. Any parent will tell you that helping a child navigate through life’s many difficulties is worth the effort. Parents of children with special needs can be extra proud of helping their kids thrive in a world that can be harsh and unforgiving towards those with perceived differences.

This “handbook” offers resources for parents at every stage of the journey of caring for their special needs children. From learning more about special needs to picking a school, planning a financial future, and getting past the bullying and discrimination that so often plague people with special needs.

Understanding Your Child’s Special Needs

For parents of children with special needs, the journey towards understanding may begin before the child is even born. Chromosomal differences such as Down Syndrome can be detected prenatally, and other developmental disabilities can be predicted with varying rates of accuracy based on the parents’ genetic history and previous children.

Other parents may not discover their child’s special needs until the child is a few years old, or even starting school. Some diagnoses don’t become apparent until a child enters the education system or starts to socialize with other children more regularly. For parents who believe that their child may have special needs, but are uncertain of how to find out, there are a few important steps to take.

  1. Review your child’s medical history (and academic history, if any): It may be possible to spot medical clues or trends indicating a particular special need that went unnoticed before.
  2. Determine the type and extent of your child’s needs: Special needs come in many forms. Some children may have visual or hearing impairment or physical disabilities. Others may have cognitive or learning disabilities that are harder to spot from the outside, but which affect their ability to process language, remember things they have learned, and socialize appropriately. Talking to a child psychologist or other specialist is one way to pinpoint exactly what difficulties your child may be having, and how to address them.
  3. Be Supportive and Accept Support: Children may become confused or emotionally distraught at the thought of being different than their peers. Having supportive parents and a supportive friend group is just as important, if not more so, for kids with special needs. For parents of kids with special needs, it can also be very important to have professional, emotional, and social support.

One of the best ways to support a child with special needs is to actively work to understand them. Parents can provide the best care possible for their special needs children by learning everything they can about each child’s particular conditions, and learning to work with them.

This graph from the Centers for Disease Control shows the range of health care professionals that may diagnose autism spectrum disorder or other special needs in children of different age ranges. An early diagnosis can make it much easier for parents to learn to understand their child and obtain the services they need.

CDC-ASD-Diagnosis-Professionals

Resources for Understanding Your Child’s Special Needs

  • National Center for Learning Disabilities: An organization focused on identifying symptoms of special needs and how parents can find the support needed.
  • Integrated Child: Integrated Child helps parents develop techniques to make their child feel happy and empowered, while also helping relieve frustration.
  • National Association for Down Syndrome: This organization offers comprehensive resources for parents, teachers, and others working with individuals with Down syndrome.
  • The Autism Society: An organization dedicated to “Improving the Lives of All Affected by Autism.”
  • Hope Paige: This article aims to help readers understand triggers and cues in children with special needs.
  • Seattle Children’s – “The Autism Blog”: The Autism Blog outlines how parents can go about getting their children with autism the proper care in various situations, along with the latest news.
  • Friendship Circle: A useful site to understand the process of meeting with school officials and other mental health professionals.
  • Ability Path: AbilityPath.org is an online hub and special needs community for parents and professionals to learn, connect and live a more balanced life – through all phases of a child’s growth and development.
  • Social Thinking: This site emphasizes the advanced intelligence of individuals with autism or ADHD, but the lack of social skills, and helps establish ways to address these issues.
  • Generation Rescue: Generation Rescue is dedicated to recovery for children with autism spectrum disorders by providing guidance and support for medical treatment to directly improve the child’s quality of life for all families in need.
  • Mighty Mommy Quick and Dirty Tips: This site has great advice for parents to learn the best approach to having a special needs child and creating lasting solutions.
  • Love That Max Special Needs Blog: From dispelling misconceptions about parents of special needs kids to describing Max’s everyday adventures, this blog is honest and beautifully written.
  • Washington Parent – “Teens and Special Needs”: This makes a great tool for properly depicting what it’s like for a special needs teenager.
  • Complex Child E-Ma: Complex Child is a monthly online magazine written by parents of children with special healthcare needs and disabilities and is intended to provide medical information, along with personal experiences, in simple language that other parents can understand.
  • The Out of Sync Child: Understanding the particularities of your child is crucial to develop the best parenting approach and The Out of Sync Child has all the content needed to help raise a special needs child.
  • BLOOM: There are various difficulties, as well as unique enjoyments, to raising a child with a disability and this site presents them in impressive detail.
  • Special Needs Book Review: Special Needs Book Review showcases titles that parents will find useful to help address various aspects of having a special needs child, while featuring insightful excerpts to give a grounded understanding of the book.
  • Parenting Press: Family care is incredibly important and parents can use this resource to inform their other siblings on how to better understand their sibling with special needs.
  • Parenting Adult Special Needs: Jill Edelman, the author of Parenting Adult Special Needs, is a licensed clinical social worker, psychoanalyst and couples therapist with over thirty years of clinical experience.
  • Association For Positive Behavior Support: The Association for Positive Behavior Support (APBS) is an international organization dedicated to improving the support of individuals in order to reduce behavioral challenges, increasing independence, and ensure the development of constructive behaviors to meet life goals in the areas of social relationships, employment, academic achievement, functional life-skills, self-determination, health, and safety.
  • Spirit Lake Consulting – Young Children and Disability: Integrative consulting services that outline how to ensure special needs children are not subjected to abuse.
  • Autism Speaks: A list of support sites that cover highly specific aspects of various special needs and disabilities.
  • eP Magazine – Exceptional Parent: This monthly magazine explains various aspects of raising a special needs child and provides integral commentary and perspective to issues parents commonly face.
  • Choices for Learning: A set of useful resources that give parents the best information for learning how to communicate with their special needs child and locate useful support groups.

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Finding a Supportive Community for Special Needs Children (and Parents)

All most parents have to consider when raising children are things like grocery shopping, getting the kids to school on time or coordinating their own meetings with their children’s soccer games or other activities. However, being a parent with a special needs child involves even further scheduling including things like doctor’s visits, therapy sessions and extra time to get around place-to-place. Having such a busy schedule can conflict with making the time to create a supportive community for both the parents and their special needs child.

That being said, there are many things parents can do to fight back against the exhaustion and endless worry of caring for a child with special needs, as well as helping their child fostering necessary outside relationships.

  • Networking with other parents within their child’s school district, hospital or those working to support their child’s disability or need (e.g. autism, CP, etc.).
  • Consulting with online (e.g. Facebook, forums), phone or in-person meeting support groups. If there isn’t a meeting nearby or online they prefer, parents can also start their own.
  • Building friendships around the child’s interests. There are many organized programs for kids with developmental disabilities where there is a great chance for the child to meet like-minded friends. On the contrary, bringing peers who do not have special needs into the home can help spread awareness and comfort surrounding the child’s disability.

These techniques allow parents to connect with other parents to help relieve the stress and exhaustion of dealing with a special needs child. The in-person meetings and networking allow for the children to interact with peers with special needs as well as, more importantly, others who support and love them for being who they are. This is something crucial for growing children of any age, race or ability.

Parents need to remember that they can’t force friendships. They need to do what they can to help their children develop their social skills and grow as an individual first. Once the child gains enough confidence and comfort in him or herself, friendships and connections will easily follow. At times it can feel incredibly lonely to have different abilities or circumstances than peers. Statistics show that many, many children have some type of disability or special need, though. It is everyone’s job to build a welcoming environment and loving community for people of all abilities.

The 2010 Census found that over 2.8 million school aged children in the U.S. have a disability or special circumstance that may require special educational consideration.

The 2010 Census found that over 2.8 million school aged children in the U.S. have a disability or special circumstance that may require special educational consideration.

Resources for Finding a Supportive Community

  • Mommies of Miracles: A great place for mothers to get involved and discuss the issues related to having children with developmental disabilities.
  • Mended Little Hearts: A non-profit focused on supporting young children with heart surgery.
  • ParentMap: ParentMap has resources for entertaining children and overcoming obstacles related to raising special needs children.
  • Not Alone – Finding Faith and Friendship for the Special-Needs Journey: Posts on this site help relate to the obstacles other parents are confronted with and how to best go about the day-to-day aspects of raising a special needs child with relatable content.
  • IN Source Indiana Resource Center: This helps families throughout Indiana identify and address issues related to special needs children.
  • Weinstein jcc: This is a community center that focuses on promoting Jewish values, while also being inclusive of special needs children.
  • Community Tool Box – Peer Support Groups: Community Tool Box explains all the best resources for finding a support group and peers that understand the parenting difficulties one may be experiencing while raising a special needs child.
  • Caregiver Action Network: Caregiver Action Network (CAN) is a non-profit organization providing education, peer support and resources to family caregivers across the country free of charge.
  • Center 4 SpecialNeeds: A list of useful support groups and resources for parents.
  • DullesMoms.com: Loaded with great support groups and events for special needs students, this site has great resources located around the greater Dulles area.
  • Psychology Today: Psychology Today explains the particular challenges parents face and it’s a great look into the psychological impacts on parents.
  • New Moms Need Blog by March of Dimes: Details programs to help keep special needs children active in the summer.
  • New York Special Needs Support: A perfect tool for finding others who can relate to special needs-related issues.
  • Children and Adults with Attention Deficit Disorder Support Group: This organization helps give a voice to problems facing those with ADHD.
  • Family Network on Disabilities: The Family Network on Disabilities has been around since 1985 and provides a forum for parents to share support for each other and also disseminate through worthwhile information.
  • Autism Community: Uniting individuals to provide input on their own struggles and accomplishments raising a child with autism, while also having great news articles.
  • Therapals for Parents: Helping special needs children make friends and feel happier in their lives, while providing parents with relatable stories.
  • 5 Minutes for Mom: Offers support, education, inspiration, and community for moms of kids with special needs.
  • WellSpring Community: Offers adults with special needs the opportunity for meaningful work and socialization in a variety of contexts.

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Special Education & Meeting Your Child’s Learning Needs

The “right” school for any child is one that allows him or her to feel accepted and supported; the “right” school for a special needs child expands on this and is a school that provides the child with the special services he or she needs to succeed alongside peers. Yet, finding this perfect fit is something many parents struggle with. Choosing the right school for a special needs child is difficult due to the child’s unique learning needs, problem behaviors and/or level of communication and academic skill sets. However, there are many things parents can look into at local schools to make the process easier.

  • Take opportunities to tour schools in the area or volunteer to shadow a teacher or have the child shadow a student. It is important to see the school operate as normally as possible to what it would with the child attending. It is also to see how the child is interacting within the classroom to determine whether or not it is a fit.
  • Find a school with a low teacher-to-student ratio. A classroom with fewer students may be a better fit for the child as it allows more individualized attention and fewer distractions.
  • Find a school with teachers specifically experienced with the child’s special need. This will result in the child’s higher success rate as well as the other students in the classroom. Finding a school with an experienced behavior specialist on site would be an added bonus. Contacting the school district’s Department of Special Education should be able to answer any necessary questions.
  • Make sure the curriculum is accurate for the child’s social and academic skill sets.

Additionally, there are several different types of school options that must be considered:

  • A traditional community school with support services. The child would go to a mainstream community school and attend class taught by a special education teacher.
  • A special education-focused school that also includes children without disabilities.
  • A special education-focused school that only includes children with disabilities.

In short, when seeking out the “right” school for a child with special needs, the learning environment which makes the child feel most comfortable is where he or she will thrive and reach their fullest potential. According to the National Center for Education Statistics, around 13 percent of kids enrolled in public school in the U.S. receive some kind of special education consideration. It is the responsibility of the parents and the school district to understand and meet each enrolled child’s special needs.

Percentage distribution of children ages 3–21 served under the Individuals with Disabilities Education Act (IDEA), Part B, by disability type: School year 2011–12  (Graph from The National Center for Education Statistics)

Percentage distribution of children ages 3–21 served under the Individuals with Disabilities Education Act (IDEA), Part B, by disability type: School year 2011–12 (Graph from The National Center for Education Statistics)

Resources for Understanding Special Education Options & Meeting Your Child’s Needs

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Protecting Your Child from Bullying

Children with special needs are often subjected to a disproportionate amount of bullying compared to their peers. The prevalence of bullying has only increased recently, partially due to the anonymity the Internet provides individuals and the ability to minimize confrontation. As a result, it’s more important than ever for parents, teachers, and peers to be steadfast in their quelling of bullying.

Bullying is a serious problem that can greatly impact one’s development adversely. The victim can be affected mentally and emotionally, which can have long-term implications. Special needs children are susceptible to bullying because other children may feel more comfortable attempting to exert power over them. This is why it’s even more important for communities and schools to establish programs aimed at reducing and ultimately eliminating bullying. When a school accepts bullying as commonplace, victims will grow disinterested in pursuing academic success.

The bullying of disabled or special needs children is an underexposed issue, but the few studies that have been published all emphasize the higher proportion of special needs students subjected to it. Reducing bullying requires a two-fold approach, one that works with both sides to build a lasting solution. A system must be in place that not only reprimands bullies, but also empowers victims to feel confident, identify their strengths, and strip bullies of their ability to demean others.

This graph from the Interactive Autism Network illustrates how much more likely it is for children with Autism Spectrum Disorders to be bullied than their neurotypical siblings. Protecting children with special needs from bullying is vital to their development.

This graph from the Interactive Autism Network illustrates how much more likely it is for children with Autism Spectrum Disorders to be bullied than their neurotypical siblings. Protecting children with special needs from bullying is vital to their development.

Resources for Protecting Your Child from Bullying

  • stopbullying.gov: A great tool for understanding anti-bullying techniques and how to establish safe environments for all children, namely those with disabilities.
  • Teaching Tolerance: Teaching Tolerance is a place for educators to find thought-provoking news, conversation and support for those who care about diversity, equal opportunity and respect for differences in schools.
  • The Wrightslaw Way – Special Needs Anti-Bullying Toolkit: Bully Free World presents a specially designed tool kit for parents, teachers and students dealing with bullying and children with special needs.
  • Pacer’s National Bullying Prevention Center: Founded in 2006, PACER’s National Bullying Prevention Center, actively leads social change, so that bullying is no longer considered an accepted childhood rite of passage.
  • Chicago Parent: This Chicago Parent Magazine blog article helps parents learn ways to help their child be more resilient to bullying.
  • Autism Empowerment: Autism Empowerment is a non-profit organization dedicated to making life better and more meaningful for children, teens, adults and families in the Autism and Asperger communities all over the world.
  • Children’s Safety Network: This toolkit is a set of resources for people to confront bullying of children with special needs from all angles – from talking to your children to knowing your rights to teaching tolerance in schools.
  • Civilschools – Building a Bullying-Free Culture: CivilSchools is a comprehensive bullying prevention program for 6-12 schools.
  • KGK Special Ed Law Blog: This is the Official Blog of Kirsch-Goodwin & Kirsch, PLLC, Arizona’s Education Law Firm.
  • Stop-Bullies.com: Since special needs children can be subjected to a disproportionate amount of bullying, this site is perfect for getting the support needed and figures out how to best approach this delicate subject.

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Planning For Your Child’s Future: Financial Security and More

Planning in the long-term is a task that comes with added difficulties for the parents of special needs children. Not only are there often higher financial costs associated with raising a special needs child, but they also demand more attention and tact when it comes to certain situations.

As a parent, once you’re aware of the particular needs your child has, it’s good to do research as to the laws currently in place related to the various options the government may have for support or the unique considerations needed regarding insurance.

Establishing a plan is integral for how to help a special needs child find success and happiness as they grow up and as the parents age. Some insurance companies have devoted pages designed to help outline the most important aspects of establishing funds to help establish long-term solutions regarding finances.

Parents will need to take into account the needs of their disabled child now to appropriately forecast what will be needed as they get older, but it’s also incredibly important to establish a retirement fund and other amenities that will be necessary for them to continue to provide for their child as they age. Those who focus solely on their special needs child in the short-term will ultimately hurt themselves, as well as the child in the long-term. The needs of caring for special needs individuals are typically more expensive once they’re adults because of things such as housing and transportation costs, so it’s important for parents to have funds in place that will afford them the income to support their children. Creating a trust for a special needs child is also a good way to support them after parents are no longer able to assist them.

This graph from the U.S. Social Security Administration illustrates the increasing relative cost of Social Security benefits for disabled adults and other beneficiaries of the system. For current parents of children with special needs, relying on social security to support a child in adulthood may not be feasible.

This graph from the U.S. Social Security Administration illustrates the increasing relative cost of Social Security benefits for disabled adults and other beneficiaries of the system. For current parents of children with special needs, relying on social security to support a child in adulthood may not be feasible.

Resources for Financial Planning for Special Needs Kids & Families

  • Care.com – “Help for Families with Special Needs”: This interview with Louise Bruce presents worthwhile information regarding respite care and how to best go about working with special needs children and overcoming barriers.
  • She Knows Parenting: It can be incredibly hurtful when a family abandons a parent and their special needs child. She Knows Parenting details how to address these concerns.
  • Parenting Special Needs: This is a magazine devoted to contemporary parenting for special needs children and includes a wealth of fun activities.
  • Fun and Function: Fun and Function is a site with toys and other items designed to promote sensory integration and improve motor skills.
  • DFW Child: Dating can prove difficult while raising a special needs child, but DFW Child’s page makes it easier to understand how to go about it properly.
  • Parent Center Hub: Parent Center Hub is an integrative resource for finding all the information needed to address raising a special needs child.
  • Oak Wealth Advisors – “Avoiding Critical Mistakes in Financial Planning for Families with a Special Needs Child”: Planning for the long-term is an incredibly important aspect of family planning and this is a great guide for how to take into account the extra costs associated with having a special needs child.
  • The Family Hope Center: This is a great organization for better becoming in-tune with parents special needs children.
  • Special Moms: Bring an entrepreneur is quite the task and having a special needs child makes it that much more difficult. Special Moms helps mothers succeed at parenting while running their own business.
  • Protected Tomorrows: This organization works to enhance lives of families with special needs, guiding them through a comprehensive process of planning for the future of their loved one.
  • M& L Special Needs Planning: M&L Special Needs Planning explains how to best go about managing a special needs child, while running a family.
  • Special Needs Financial Planning – Shepherd Financial Partners: The goal of Special Needs planning is to provide the most comprehensive planning for families that have a loved one with a physical and/or developmental disability.
  • TonyNovak.com: Tony Novak is trained in tax & compensation planning, works for a number of consumer finance and environmental advocacy projects and is an active supporter of local music & youth programs.
  • 1st Life: 1st Life Planning was formed in 2012 by a group of concerned and passionate parents aspiring to provide an enhanced and sustainable Home and Community-based Services (HCS) program with residential opportunities.
  • The USAA Educational Foundation – Children With Special Needs: The USAA Educational Foundation offers individuals the opportunity to be better informed and prepared to make the best choices through every stage of life.
  • Special Needs Family Planning: Whether you are preparing for a milestone life event, such as retirement or the sale of a business, or simply looking for financial protection for the future, Special Needs Family Planning promises to offer you a new level of attention, insight, and guidance.
  • Youthful Horizons: This organization offers a variety of therapy programs that can prove useful for emotional and stress relief.
  • Support for Special Needs: A place to come for inspiration and insight when it’s needed most while raising a special needs child.
  • Special Needs Financial Planning: An important aspect to life planning for a special needs child is making sure that the parent is taken care of as well and this site has all the information parents will need.
  • Special Needs Alliance: An attorney group committed to helping families of special needs individuals establish trusts and obtain the proper public benefits.

Special Needs Parenting is an Ongoing Process

For parents of special needs kids, knowing what to do every step of the way can be a struggle. Understanding your child’s rights and needs, and your own, is an ongoing process that will take time. These resources, in combination with the consultation of trained professionals, can provide a platform for success for parents who want to give their kids the best shot at a comfortable and happy life. For times when the going gets tough, here are two things worth remembering:

  • You and your child are not alone!: There are wonderful communities out there that would love to help and support you as you navigate life with a special needs child.
  • Professional help is worth it: Getting help from special educators, counselors, psychologists, and financial advisers is a wise choice. A trained professional can do wonders for your child’s future (and present).

With these guidelines in mind, and the resources above at your disposal, the challenges of special needs parenting may be large, but the rewards will be even larger.

Happy Parenting!

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