Comprehensive Resources for Parents with Special Needs Children

“Special needs child” is a description used in the clinical diagnosis and functional development for children who may require some type of assistance beyond the needs of a typical child. Whether the challenge relates to a physical challenge (missing limbs, epilepsy, etc.), developmental delays, or other types of challenges, the term “special needs” is intended to cover a wide array of illnesses, conditions, and disorders.

Children who are considered to have special needs generally fall into one of four categories: Physical (muscular dystrophy, multiple sclerosis, chronic asthma, epilepsy, etc.); developmental (Downs Syndrome, autism, dyslexia, processing disorders, etc.); behavioral/emotional (Attention Deficit Disorder, bipolar, Oppositional Defiance Disorder, etc.); or sensory impaired (deaf, blind, visually impaired, limited hearing, etc.). Those “special needs” may be short-term or long-term; the condition(s) may have started at birth or may be developed in later years.

Growing up as a sibling to a special needs child myself, and then becoming a parent to a child with special needs (though different ones), I can say that the experiences you gain through being the sibling or parent of a special needs child can be daunting and also enlightening.  No other experience can relate to how different your life may be, and yet providing love and support to a special needs child has the opportunity to change you – and also the way you interact in the world – in the most positive and meaningful ways.

Definition of Special Needs Children

Children who have special needs are those who may have more severe challenges than those of a typical child, and generally fall into the categories of physical impairments, behavioral or emotional challenges, developmental challenges, or may be sensory impaired.

Some children are born with special needs that may last their entire lives, while other children may have special needs for a shorter period of time (such as a children who have asthma when they are an infant or preschooler, but then the condition is outgrown during later development).

Most generally, special needs children need additional care or services that relate to their condition and help to overcome challenges.

Types of Special Needs Children

Types of special needs in children vary widely, though they most generally fall into four distinct categories (although some children have multiple disabilities that don’t fall into any single category).  Some of the most common “special needs” descriptions are listed below within the four general categories.

Physical

• Muscular dystrophy
• Multiple sclerosis
• Chronic asthma
• Epilepsy
• Stuttering
• Impaired articulation
• Language impairment
• Voice impairment
• Orthopedic impairment

Developmental

• Downs Syndrome
• Autism
• Dyslexia
• Processing disorders
• Intellectual disability

Behavioral/emotional

• Attention Deficit Disorder (ADD) or Attention Deficit Hyperactivity Disorder (ADHD)
• Bipolar
• Oppositional Defiance Disorder
• Anxiety disorder
• Schizophrenia
• Obsessive-compulsive disorder
• Depression

Sensory impaired

• Deaf
• Blind
• Visually impaired
• Limited hearing

Help with Special Needs Child

If you are a parent of a special needs child, there are times when you may need help. While other parents are juggling their child’s social activities along with work and household responsibilities, you may be balancing a lot more. Plus, you’re also dealing with the emotional strain that comes with the life of juggling a special needs child’s various doctor’s appointments, therapy or intervention specialists, and more.

Here are a few tips that can help you navigate getting the help you need:

1. Take Time Out for Yourself on a Consistent Basis.

Yes, your child needs you, but consider that s/he also needs you to be rested – both physically and mentally. Call on a trusted sitter, friend or family member who can stay with your child while you spend time doing something you enjoy – whether it’s just a few hours of doing nothing, gardening, socializing, or whatever you feel may help you rejuvenate and reduce your level of stress and worry for a few hours.

It’s also good for your child to spend time in the company of someone else besides you, and it helps them learn to adjust to change in their routine to an extent. Depending on your child’s needs, you may need to offer some specific training for the person who stays with your child. If you’re not able to do this yourself, seek out more formal training to see if it’s available through any local services.

2. Make a List of Needs.

Often times, friends or family members may ask if you need help, and you don’t have an answer to offer off the top of your head. So keep a list of things others could do to help when they ask.

These could be things like preparing freezer-ready dinners that you could heat up on nights when you’re busy or exhausted; transportation; yardwork; cleaning; or anything that could lift your burden from time to time.

There are also websites where you can list your needs and others can sign up to help online.  Many of these are available online, but they tend to be locally-based so do an online search for your local community to see what websites are available to help match volunteers with families’ needs.

3. Investigate Home Health Care Options.

Depending on how severe your child’s needs are or the specific type of need, home health care may be a helpful option. If you have health insurance, it may be that they can help to cover some of the cost. Check with your insurance benefits provider and ask what home health care opportunities may be available to you.

Resources for Children with Special Needs

A wide array of resources are available online to assist with navigating life with a child who has special needs. These range from direct services, to advocacy, to general information and education. Below is a list of some great places to start in finding answers and connecting with services:

The Arc – This links to the main website where you can find your local chapter from there.  Arcs are located across the United States and can assist with a variety of resources for families with a child who has intellectual or developmental challenges.

U.S. Department of Labor – This links to a page to find information relating to government benefits, civil rights, community life, education, and employment.

Disability Resource Community – This links to thousands of resources to help families with a special needs child. Click on “Service Reviews” to find different types of services that have been suggested by other families as helpful.

Easterseals – A link to their main website providing resources to individuals and families of special needs children.

Yellow Pages for Kids – Yellow Pages for Kids with Disabilities organizes resources by state so that you can more easily connect with resources available in your local area.

Family Voices: Kids as Self Advocates (KASA) – KASA is a program of Family Voices, a national advocacy organization. This page links to tip sheets created by children with special needs of varying types – created for other children with special needs.

eParent Special Needs Resource Directory  – This links to a page where special needs products and services may be searched by geographic location or by product/service category.

Special Needs Alliance – This organization is comprised of attorneys who are committed to helping families with special needs. The site provides information, resources, and a directory of attorneys experienced with the needs of a family with special needs.

Federation for Children with Special Needs –  This is a national organization providing special education for parents, along with family support, parent to parent support, health care advocacy, and more.

Parents Helping Parents – This is a parent-directed and community led organization providing information about support groups, crisis support, family and community services, early intervention information and resources, and more.

Working with Special Needs Children

For those seeking a career working with special needs children, there are numerous amazingly emotionally rewarding career choices available. Consider that you are not only helping a child (or children), but also their families and loved ones, in a way that connects you emotionally to their stories, their goals and outcomes, as well as their hearts.

One of the most common career choices in this field is becoming a special needs teacher, where you would work with children in an academic environment. Special needs among children vary widely, and being trained to tailor your teaching style to individual children based on their learning style and challenges is necessary for success.

Another option is to become a counselor or staff at a camp designed for children with special needs. Individual camps are often based around particular needs (or a group of needs) so that the children feel more connected within their group of camp buddies, and also so that activities make sense for the group.

Seeing the same children return year after year, how they’ve grown, matured and developed, and also meeting new children each year are heartwarming aspects, beyond the in-the-moment experiences of providing fun activities for special needs children to learn, grow, and tackle projects and activities together.

Along similar lines, you may be interested in volunteering to work with special needs children. This can also be through a summer camp program, community service program, or volunteering to work with individual families.

Whether your choice to work with special needs children is through your vocation or in volunteering, here are some tips and insights you may want to consider:

Compassion

Learning to be compassionate is key when working with special needs children.  Do your best to imagine what it would feel like to be in the same position as the child you’re working with. What would you need?  What would likely prove challenging? What would be most appreciated?

By taking on a compassionate attitude and demeanor, you make each interaction a more caring one. By doing so, the child is better able to focus on the task at hand rather than on how s/he feels and may react to sensing discomfort or a negative attitude from you – in whatever capacity you are working with them.

Patience

Patience is similar to compassion, in that you would need to understand that special needs children may take infinitely longer to complete a task than a typical child. This can be based on a physical or mental challenge where it simply takes longer for those reasons, or they may need more time emotionally to warm up to a situation or task. In either case, your patience will help provide them with a foundation that lessens their frustration and helps them to move forward.

Observation

Observing the situation and a child’s responses is another key in working with special needs children, especially as you are just getting acquainted. If you ask a question and don’t receive a response, looks for clues. Does the child look afraid? Uncomfortable? Startled?

Sometimes a gentle touch can help – a hand on their shoulder or their hand. Observe the bigger picture, as well, to see what may make sense. Is the environment loud or uninviting? Is a parent or loved one around? Does the child know anyone else in the immediate vicinity? Take in as many clues as possible and go from there, incorporating compassion and patience already mentioned.

Physical and Emotional Risk

Keep in mind that depending on the capacity and environment with which you choose to work with special needs children, you may need to overcome a bit of risk. If at an outdoor summer camp, you would be in new surroundings, away from home, with a group of staff and children you don’t know. Are you up for the challenge? What if you don’t get along with the other staff members? Or the children? How will you navigate a summer in such situations?

Physically, depending on the child or children’s needs, you may need to lift an immobile child, or assist them physically in some way. If volunteering in someone’s home, again, you’re in a new environment and need to understand the challenge or putting yourself in a position of not knowing what to expect. So simply think through any potential risks in your given situation to decide if you are comfortable taking on the specific challenge.

Consistency

Consistency is hugely beneficial in working with any children, but especially when working with special needs children. Regardless of their needs, you should be able to be consistent in your words and action. If you say something, stick with it throughout. If something needs to change, communicate the change clearly (and the reason for it).

Children with special needs learn to depend on routine and knowing what to expect. If actions don’t meet anticipated expectations, it leads to uncertainty for the child, which often results in unnecessary fear and discomfort.

Life Lessons

Working with special needs children in any capacity of a regular basis will change your life. The connections you make with families and special needs children will deepen your understanding of people in general. You may learn to appreciate people in new ways as you look beyond what may have been a more superficial view previously.

Seeing other with special needs will unfold differently for you, as you may feel more comfortable helping others or connecting with others than you may have been otherwise. And you will have touched the lives of families and children in special ways – as most likely, they will touch your life, as well.

Caring for Children with Special Needs

Caring for children with special needs can be a 24/7 thing, depending on your child’s needs.  As a parent of a special needs child, it’s helpful to know what options are available to you if you need outside assistance. Here’s a list of some typical options that are most useful:

Family Care

If you have family members living nearby, this may be a most helpful option. As with any of the options listed here, it also comes with its own set of challenges. Benefits may include your child already feeling comfortable with the family member; the family member being aware of your child’s needs; feeling comfortable with a family member staying in your home (or the child staying in theirs). Challenges may include setting boundaries; being given unsolicited advice (that you don’t necessarily agree with); compensation; or even guilt.

Local Adult Caregiver

You may be lucky enough to find an adult nearby who is either a parent of another special needs child who can help, or someone who has experience working with special needs children. Alternatively, you may find an adult who is interested in learning the skills and requirements that are needed to care for your child.  Websites like Care.com can help to find local individuals offering this type of care.

Licensed Child Care Center

Investigate local child care centers to see if there is one you feel would be able to accommodate your child’s specific needs. While they are required by law to do so (except for faith-based centers), that doesn’t mean they are qualified or would offer the level of care and comfort that would keep your mind at rest during your child’s stay there. Though if you can find one that seems well-suited, your child would likely benefit from the social setting. So again, there are benefits and challenges to this option.

Respite Care

Sometimes, you simply need time to recharge, and finding a respite care center or caregiver can help you do just that. Seek out local community resources to see what respite care options are available in your area. Websites that offerUnderstood.org directories of caregivers may include this as an option, as well.

Special Needs Children’s Rights

There are many resources available online to learn about your special needs child’s rights. These range from rights related to everything from quality education to health care. Here are a few online resources to point you in the right direction for learning what you need to know:

Procedural Safeguards for Parents – ExceptionaLives provides a list of procedural safeguards you need to know as a parent in order to exercise your child’s rights, so this is a logical place to start.

Basic Laws – MilitaryOneSource provides a list of which basic laws are in place to govern children with special needs. It’s a good place to visit next to better understand what legal rights you have.

Understood.org– This site provides information regarding rights related to your child’s education.

By knowing what laws are in place to safeguard your child’s rights, you can navigate various systems and environments with a deeper understanding of what to do first and any next steps that are available throughout your child’s experiences within those environments.

Grants for Children with Special Needs

Grants may be available to help offset expenses related to raising a child with special needs.  The availability of funds or grant programs often depends on your child’s specific needs, so a bit of research is key.

Here are a few list compilations of links to grant programs you may want to explore:

Funding and Grants for Children with Disabilities (available on United Spinal Association’s website)

Funding Resources for Special Needs and Assistive Equipment (available on eSpecialNeeds’ website)

Innovative Funding Sources for Children with Special Needs (available through AngelSense.com)

List of Grant Resources Plus Other Helpful “Gifting” Resources (available through Everything Special Needs’ website)

For funding and grant opportunities, always FIRST read through the program requirements to ensure your child’s needs and your specific situation is a match for the minimum grant requirements. Otherwise, you’ll be wasting your time and your application will be rejected.

If a program seems well-matched, spend time reviewing the application, organizing your request to make a strong case for support, and ensure that you submit the application and any requested materials within the specified time frame for the greatest chance of potentially be awarded a grant.

Parenting Children with Special Needs

Parenting a child with special needs can be overwhelming…and wonderful. Parenting ANY child is challenging, yet if your child has more severe needs, then your parenting is likely to be a more challenging experience, as well.

First, know that if you feel frustrated, exhausted, overwhelmed, and like some days you’d love nothing more than to just throw in the towel – you’re not alone. These are very common feelings for parents where most days seem like a challenge.

Here are some tips for coping with the most common challenges:

• Review the tips above under the “Help with Special Needs Child” heading. Getting help is essential to ease your everyday challenges.
• Nurture the relationship with your partner as well as those with your child(ren). Find a way to spend even just a bit of quality time together. Be sure to communicate with each other compassionately, openly and honestly, and understand that you are both feeling things that are validated.
• Nurture relationships with your other children so that all of your time is not focused on the one child who may have special needs. Spend one on one time with each, and communicate how each one is special in different ways.
• Work together within your family to problem-solve and tackles tasks and obstacles as a team.

Facts about Children with Special Needs

18.5 percent of children are “special needs children.” The National Center for Learning Disabilities conducted a survey to find out how parents felt about parenting a child with special needs. They recognized that the child’s life and experiences are primarily affected by their home life and how they are parented.

When parents were questioned about how they felt raising a child with special needs, 35 percent had serious concerns about how well they could cope with their child’s disability.

31 percent have conflicted feelings. They are worried about their child’s future and don’t always know where to find the resources they need, yet they accept their child’s individual challenges.

34 percent are optimistic about how they feel they can cope with their child’s special needs.

Related Questions

How do you talk to a child with special needs? Start by assuming competence until you see otherwise, and assume the child is doing his or her best; show patience and understanding if you see the child is struggling, and allow for extra time; avoid making assumptions and kindly ask any questions for things you don’t know; treat a disability or challenge as normal, and address any specific concerns in as low key way as possible.

How do you identify a child with special needs?  It’s not always easy to tell if a child has special needs.  Some signs and symptoms to look for that may relate to various disabilities include: inattention, hyperactivity, impulsivity, slow inaccurate reading skills, poor spelling, and many more. Keep in mind that there are many signs and symptoms that relate to many potential challenges, and these fall along a spectrum in most cases.

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