Living With Your Child With Special Needs

By Terri Mauro, About.com Guide to Special Needs Children

Living with a child with special needs can be a joy and a challenge. Manage your family, social and
emotional issues with these articles and resources on the Parenting Special Needs site.

1. Behavior Strategies
2. In the Community
3. Life Skills
4. Sibling Issues
5. Marriage Issues
6. Special Occasions
7. Planning for the Future
8. Stress Management
9. Support and Inspiration

Behavior Strategies
When kids can't understand or control their own behavior, it's all up to the parents to make things
work. Find some useful techniques for managing and modifying behavior in children with special
needs.

 Behavior Analysis Basics

 How to Make Behavior Charts Work
 Choose Your Battles
 Count to 10
 Keep a Big "Bag of Tricks"
 Set Get-able Goals
 How to Make a Transition
 Say What You Mean

 Top 10 Time-Out Spots

 Lying vs. "Truthiness"
 When Ultimatums Don't Work

In the Community
Your community may not always seem like the most welcoming place for your child, but helping others
get to know him and introducing her to the world beyond your family are worthwhile pursuits. Here
are some ways to get your child out and about, and to handle the problems that may come up.

 Worshiping With a Special-Needs Child

 Before You Go to the Mall With Your Child
 Dining Out With Your Child
 Special-Needs Sports

 Special-Needs Summer Camps

 Warning Labels for Allergic Kids
 Dealing With Toxic People
 Sites of the Day: Special Programs
Life Skills
It may seem easier to just do everything for your child than to put up with error-filled attempts. But
ultimately, both you and your child will benefit from efforts to teach basic living skills. Here's some
help in making that happen in a slow, steady, smooth way.

 Teach Your Child Self-Care Skills

 Before You Potty Train
 The "No Pants" Toilet Training Method
 Help Your Child Eat Neat

 End Face-Washing Struggles

 Teach Your Child to Cook
 Picking Up After Packrats
 Teach Your Child to Stay in Bed All Night

Sibling Issues
Brothers and sisters of children with special needs have special challenges of their own, including
finding their place in a family that may seem preoccupied with one sick child, and dealing on a daily
basis with behavior that may be hard to understand. Read more about how to help the whole family at
a trying time.

 Book Review: Supporting Siblings and Their Families During Intensive Baby Care
 Book Review: Brothers and Sisters
 A "Mom Moment" on Siblings

 Video: A Tribute to Trent From His Four-Year-Old Sister

 Video: A Brother Helps His Sister With Her New Walker
 Site of the Day: Sibling Support Project

Marriage Issues
Parenting a challenging child can put a great strain on a marriage. It doesn't have to tear you apart,
though, if you learn how to work together and devote some time to each other.

 Book Review: Married With Special-Needs Children

 How to Make Talking Less Distressing
 What Mothers Really Need
 Ten Places to Find a Babysitter for a Child With Special Needs
 Create a Caregiver "Cheat Sheet"

Special Occasions
Holidays and special times with extended family should be a wonderful and enriching time for your
child, but all too often it's a source of stress, strain, and hopelessness. Adjusting your expectations of
everyone involved -- including yourself -- can make a big difference.

 Special-Needs Children and Special Occasions

 Christmas Help
 Valentine's Day Help
 Easter Help
 Passover Help

 Halloween Help
 Thanksgiving Help
 Fourth of July Help
 Summer Survival Kit

Planning for the Future

What will happen to your child when you're gone? The time to start answering that question is now.
Right now.

 What Is a Special-Needs Trust?

 Writing a Letter of Intent
 Books on Financial Planning
 Book Review: Steps to Independence

Stress Management
There's pretty much no way for the parent of a child with special needs to avoid stress entirely, but
you can manage it instead of letting it manage you. Here are some techniques for taking control.

 Keep a Journal
 Worry More Constructively
 Give Yourself a Time Out
 Control Your Reactions
 Work Out With Your Child

 Take a Day Off

 Streamline Your Morning Routine
 Keep a School Year Calendar
 Request a Work Schedule Change
 20 Things Not to Worry About Today

Support and Inspiration

Knowing that others have been there, done that, and survived is an empowering thing for parents of
children with special needs. Find some inspiration and companionship to help you make it through the
day.

 Finding a Support Group

 Love Notes for Special Parents
 Enterprising Parents
 Mom Moments
 Eight Quick Ways to Get Inspired

 Realistic Resolutions
 Inspirational Books
 Inspirational Videos
 A Special-Needs Parent's Wish List
 31 Ways to Tell Your Child "I Love You"

Related ArticlRealistic Resolutions - 31 Parenting Resolutions to Transform Your Child, Y...Realistic

Resolutions - 31 Parenting Resolutions to Transform Your Child, Y...Book Review: More Than a Mom -
Living a Full and Balanced Life When Your Ch...The ABCs of Behavior Management - Parenting Tips for
Managing BehaviorYour Child's Diagnosis

 "Special Needs" is an umbrella underneath which a staggering array of diagnoses can be wedged. Children with
disabilities or profound mental retardation; food allergies or terminal illness; developmental delays that catch u
 occasional panic attacks or serious psychiatric problems. The designation is useful for getting needed services,
understanding for a child and stressed family.
 Minuses and Pluses:
 "Special needs" are commonly defined by what a child can't do -- by milestones unmet, foods banned, activities
minuses hit families hard, and may make "special needs" seem like a tragic designation. Some parents will alwa
and many conditions become more troubling with time. Other families may find that their child's challenges ma
weaknesses are often accompanied by amazing strengths.

Pick any two families of children with special needs, and they may seem to have little in common. A
family dealing with developmental delays will have different concerns than one dealing with chronic
illness, which will have different concerns than one dealing with mental illness or learning problems or
behavioral challenges. This Parenting Special Needs site devotes sections to the following specific
issues: medical, behavioral, developmental, learning, and mental health.

Medical Issues:

Medical issues for children include serious conditions like cancer and heart defects, muscular
dystrophy and cystic fibrosis; chronic conditions like asthma and diabetes; congenital conditions like
cerebral palsy and dwarfism; and health threats like food allergies and obesity. Children with medical
issues may require numerous tests, long hospital stays, expensive equipment, and accommodations
for disabilities. Their families have to deal with frequent crises, uncertainty, and worry.

Behavior Issues:

Children with behavior issues don't respond to traditional discipline. With diagnoses like ADHD, Fetal
Alcohol Spectrum Disorder, Dysfunction of Sensory Integration, and Tourette Syndrome, they require
specialized strategies that are tailored to their specific abilities and disabilities. If those strategies are
not developed and used, kids with behavior issues throw their families into chaos and are seriously at
risk for school problems. Their parents need to be flexible and creative.

Developmental Issues:

Developmental disabilities are some of the most devestating for a family to deal with, changing visions
of the future and providing immediate difficulties in caring for and educating a child. Diagnoses like
autism, Down syndrome and mental retardation often cause children to be removed from the
mainstream, and parents must be fierce advocates to make sure their children receive the services,
therapy, schooling, and inclusion they need and deserve.

Learning Issues:

Children with learning disabilities like dyslexia and Central Auditory Processing Disorder struggle with
schoolwork regardless of their intellectual abilities. They require specialized learning strategies to meet
their potential and avoid self-esteem problems and behavioral difficulties. Parents of learning-
challenged kids need to be persistent both in working with their reluctant learners and with the
schools that must provide the help these children need.

, Mental Health Issues:

A child's problems with anxiety or depression can sneak up on parents; problems with attachment
may smack them right in the face. Living with a child with mental health issues can put family
members on a roller coaster of mood swings and crises and defiance. Parents have to find the right
professionals to help, and make hard decisions about therapymedications, and hospitalization. The
consequences of missed clues and wrong guesses can be significant.
Common Concerns:

Although every special-needs child is different and every family is unique, there are some common
concerns that link parents of challenged kids, including getting appropriate care and accommodations;
promoting acceptance in the extended family, school and community; planning for an uncertain
future; and adjusting routines and expectations. Parents of children with special needs are often more
flexible, compassionate, stubborn and resilient than other parents. They have to be.

Getting a Diagnosis

Researching a Disability
Alphabet Soup Unscrambled
Accepting Your Child's Special Needs

Learning to Cope

After the Diagnosis

Working with Specialists
Focus on Today, Not Tomorrow

Inspiration

 Love Notes for Special Parents

 Enterprising Parents
 To-Do Lists

 No matter how wonderful a family is, no matter how loving or supportive or caring or
compassionate, there are times when people do things to each other that really
aren't very nice. Times when people are just too busy, or something happens that
really has nothing to do with anyone in the family, but still makes people angry or
impatient or inconsiderate. And for a family that tries to be kind and caring and
compassionate all the time, these relatively minor upsets can throw everybody off
balance. For a family to become truly healthy, family members need to develop the
understanding and strength to deal with each other when things aren't so nice -
when passions and tempers, discomforts and fears get the better of the best of us.

When choosing toys for your child, it is important to consider developmental age. This is
especially important for children with disabilities.In general, look for toys at or slightly
above your child's skill level. It is important to have toys that can be successfully play with
as well as those that challenge. Challenge should be fun and stimulating; not frustrating.
The best toys are those that actively engage children, physically and mentally. They can
also be used in a variety of ways, depending on the child's interests, ability levels and
imagination. We suggest that families overlook glitzy, electronic toys (many of which can
only be used in one way) and computerized games (which don't require children to be
physically active) in favor of more basic toys that help enhance the gross motor skill
development of young children.

Gross motor skills are those that come from the physical activities that kids do naturally-
running, jumping, crawling, climbing. The stretching and strengthening of muscles in early
childhood lead to other refined motor skills, such as grasping and pinching-skills needed to
hold a crayon or pencil or cut with scissors. They also allow children to hold themselves
upright, make eye contact and sit for lengths of time when learning such skills as reading
and writing once they reach school age.

When first faced with the reality of a disability, many experience a loss of confidence,
depression, and believe their lives have ended. They are often alienated from family and
friends because there are no shared positive experiences.

Adapted sports and recreation offers the opportunity to achieve success in a very short
time period; to use this success to build self-confidence and focus on possibilities instead
of dwelling on what can no longer be done.

The ability to participate in a sport, such as cycling; skiing; and sailing, to name a few,
provides the opportunity to reunite with family and friends in a shared activity.

Competition improves sports skills. It allows individuals to experience the excitement of

competition and the thrill of victory, as well as the agony of defeat.

These experiences help prepare individuals after rehabilitation to face the adversity of a
disability in their lives and to learn to bounce back in the face of challenge and change.

Sport instills self discipline, a competitive spirit, and comradeship. Its value in promoting
health, physical strength, endurance, social integration, and psychological wellbeing is of
little doubt. It is not difficult to understand why adapted sport is so important for the well
being of people with disability

Beneficial aspects of sport

Treatment

A great many sporting activities that can be used for rehabilitation and recreation have
become possible for disabled people. Adapted sport is increasingly being used as treatment
complementing the conventional methods of physiotherapy. It helps to develop strength,
coordination, and endurance

Social benefits

Another important aspect of sport is the opportunities it provides for disabled people to
establish social contacts. Disability that persists can cause deterioration of disabled people's
attitudes towards themselves and result in self pity, disruption of self esteem, and social
isolation. An adverse psychological reaction may be reinforced by the embarrassed attitude
of the able bodied members of the community.

Participation in adapted sports can help newly physically disabled people to regain self
esteem, promotes the development of positive mental attitudes, and helps them to come to
terms with their disability and achieve social reintegration. Furthermore, disabled people
with psychodepressive states have been seen to achieve resolution of this aspect of their
disability by being able to take part in sport.

Disability Summer Travel Made Easy

Hotels across the country offer accessible rooms, but it is important to contact the hotel
directly to make sure these standardized rooms will meet your needs.

Planning ahead takes the headache out of last minute plans so booking a room should be
one of the first things crossed off your vacation to do list.

With all these arrangements made ahead of time, it is still important to be flexible.
Unexpected situations do arise, but thanks in part to your planning skills you are already
aware of possible back up plans. Knowing before you go allows you to go with the flow and
have a vacation that is truly a vacation.

Craft therapy nurtures children and adults, offers an opportunity for self expression,
develops fine motor skills and reduces stress.

Craft therapy offers a sense of accomplishment gained through mastery of a skill. The self-
confidence and creative way of thinking that class participants develop carry over into other
fields of endeavor outside the realm of “art,” enabling them - at any age - to engage the
world on a more meaningful level.Craft therapy encourages the development of fine motor
skills such as drawing, tracing, and cutting. There is no such thing as right or wrong. With
crafts, making the item, not the end result, is paramount. At the end of the crafts
experience, everyone comes away with their masterpieces.

Special Needs Financial Planning

Develop a special needs financial planning roadmap.

Set Goals

Develop a clear vision of how you want your dependents with special needs to live.

 What kind of life do you envision?

 How will he/she live without you?

A Letter of Intent can help you summarize your goals.

Special Needs Financial Planning Tips

Determine the cost for care for the lifetime of your dependents with special needs.

 Government programs or funding received today may not be available in the future.
 Costs of current services may not be covered if a child is no longer part of the educational system.

Develop a Plan

Your special needs financial planning should provide for a dependent’s care after your death.

 Complete a will.
 Appoint a guardian.
 Complete a letter of intent for future caregivers.
Review the Assess Your Situation checklist to make sure you’ve covered living arrangements, care, education,
and government benefits in your special needs financial planning.

Implement and Maintain the Plan

Work with a financial professional and your legal counsel to ensure you have the necessary documents drafted with
the appropriate wording for your dependents with special needs.

Important Documents and Tools

It’s important to work with an attorney with special needs expertise who can carry out your wishes and ensure
important documents are completed.

These may include:

 Will
 Trust
 Letter of Intent
 Durable Health Care Power of Attorney
 Durable Power of Attorney
 Living Will
 Power of Attorney

Resources and Tools

 Kindred Spirits: The Mutual Concerns of Parents with Special Needs Children Study
 Five-Step Planning Process
 Letter of Intent
 Assess Your Current Situation Checklist
 Special Needs Resources

A Northwestern Mutual representative can provide you with a copy of the Pocket Resource Guide. The guide
contains information for dependents with special needs and their families and was developed in partnership with
Exceptional Parent.

Online Resources

 Social Security Online

Under the section "Information for" click on "kids." Benefits for Children with Disabilities provides other useful
information.
 
 Disabilityinfo.gov
Disability-related information and programs: Civil rights, community life, education, employment, housing,
health, benefits, technology and transportation.

Other Considerations

An inheritance or gift from a family member may cause problems for dependents with special needs. Disqualification
from federal benefits such as Supplemental Security Income (SSI) and Medicare may occur with even a small
inheritance.
Special Needs Trust

A special needs trust, if drafted properly, can help eliminate disqualification and provide financial support beyond
government benefits for dependents with special needs. A trustee must manage the assets of the trust according to
the trust arrangement.

The trust:

 Allows family members to leave money or property to the trust rather than an individual.
 
 Provides extra and supplemental care, maintenance, support and education beyond local, state or federal
programs.
 
 Grandparents may use a life insurance policy to set aside funds payable to a trust for special needs
grandchildren.

Post-Secondary Education

Your special needs financial planning should include all school costs, including disability-related educational
expenses.

 Individualized Educational Program (IEP)

The federal IEP program includes transitional planning at age 14 and focuses on skills and services needed
to successfully transition from school to adult life.
 
 Education Funding
There’s no shortage of ways to fund and save for a child’s education. Students with disabilities may be
eligible for financial aid, including grants, scholarships and awards.

We Can Help

An Attorney can help prepare what’s called a “supplemental needs” or “special needs” trust. Northwestern Mutual can
help you find ways to fund the trust. One option is a second-to-die permanent life insurance policy. It provides much-
needed resources at the death of a second parent and is typically lower in cost than a single life policy.

Northwestern Mutual can help you create an educational funding plan for all your children, including dependents with
special needs. A 529 college fund* can help round out your special needs financial planning to ensure dependents
with special needs have a secure financial future.

What other financial planning is important for other members of your family?

 Retirement Planning
 Saving for College
 Estate Planning
 Life Insurance
 Disability Insurance

Northwestern Mutual understands the challenges your family faces. We can help you identify your unique needs and
goals and ensure your financial planning includes solutions for all members of your family including those dependents
with special needs.
Individual Disability Income Insurance

Purchased by an individual to protect his or her most valuable asset – the ability to earn an income. Provisions and
features cannot be changed by the insurance company once issued.

Each individual has unique needs and desires in protecting their income. Northwestern Mutual offers a great deal of
flexibility and options that allow you to customize a policy to meet your needs, and fit within your budget.

Types of Disability Insurance

Non-Cancellable Guaranteed Renewable

Premiums cannot be changed by the insurance company once the policy is issued.

Guaranteed Renewable
Premiums may be changed by the insurance company on a class by class basis after the policy is issued.

Interim Term
Provides temporary coverage until an employee qualifies for employer-sponsored disability coverage. The policy is
guaranteed renewable for one, two, three, four, or five years.

Key Features

Part of every disability income insurance policy, with choices to meet your needs:

Beginning date
Disabilities are not always measured in consecutive days. Northwestern Mutual allows an extended period of time to
accumulate days of total or partial disability toward the Beginning Date of benefits. Days of disability due to different
causes will be accumulated to satisfy the Beginning Date.

Benefit Period
Northwestern Mutual offers Maximum Benefit Periods of two years, five years, to age 65 or to age 70. Most people
choose to purchase coverage that would provide disability benefits to age 65 to insure against a long-term disability.

Definition of Total Disability

 Specifies the circumstances under which you would be considered totally disabled, and receive your full
monthly benefit.
 Most disability income insurance definitions of total disability focus on the ability to perform the principal
duties of the regular occupation – the job you were doing when the disability struck.
 Northwestern Mutual offers a variety of alternative definitions to best fit your unique circumstances. 
Depending on your state of residence there is even a definition designed specifically for physicians and
dentists.
 Your financial representative will be able to recommend the best definition for you based on your specific
circumstances and occupation.

Standard Features

Automatically part of every disability income insurance policy:

Benefits for Partial Disability

  Pays in proportion to the amount of income lost.
 Eligible when you are able to do some, but not all of your duties, or unable to spend as much time at your
job as you did prior to disability.

Transition Benefit

 Pays after you return to full-time work if your income is at least 20% less than it was prior to disability.
 Paid for up to 12 months to help you transition back into productive work.

Benefits for Presumptive Total Disability

 For total and irrecoverable loss of vision, hearing, or speech, or for loss of use of two or more limbs
(hands/feet).
 Benefit is paid from the date of the loss without a beginning date.
 Benefit is paid for life, as long as the disabling condition continues.

Presumptive Plus Benefit

 Adds 50% more benefit for presumptive total disability occurring prior to age 50.

Waiver of Premium

 Waives premiums on your disability insurance contract during periods of total or partial disability.
 Helps further with cash flow during a potentially difficult financial time.

Optional Features

Available at additional cost. May not be available in all states, with all plans, or to all insureds.

Future Increase Benefit*

 Tied to the Consumer Price Index (CPI).

 Helps your monthly benefit keep pace with inflation before and after disability.

Indexed Income Benefit*

 Tied to the Consumer Price Index (CPI).

 Helps your monthly benefit keep pace with inflation during a disability.

*Because these benefits are capped, they may not provide complete protection against inflation.

Additional Purchase Benefit

 Guarantees your ability to purchase additional disability income insurance coverage in the future regardless
of changes in your health, activities, or occupation.
 Subject only to financial underwriting.

Social Insurance Substitute Benefit

 Provides disability benefits that are coordinated with benefits from the Social Security Administration (SSA)
and/or State Disability Insurance (SDI) programs.
Important Documents and Tools

It’s important to work with an attorney with special needs expertise who can carry out your wishes and ensure
important documents are completed.

These may include:

 Will
 Trust
 Letter of Intent
 Durable Health Care Power of Attorney
 Durable Power of Attorney
 Living Will
 Power of Attorney

Family Needs and Developing Support Systems

1 Introduction

a) You do a blah..blah..blah.. here!

2 Get the participants to form five groups

3 Family Needs:

a) Identify the needs of a family without any children with disabilities (group
activity)
Areas for each group: finance, leisure, safety and protection, love and
affection, old age and retirement
b) Discuss the findings
c) Identify the needs of a family with a child who has mental retardation (group
activity)
Same areas
d) Discuss how and why needs change when there is a special child in the family
e) Generate possible solutions to each of the issues discussed (whole-group
discussion)

4 Get the participants to form five groups with participants different from the earlier
groups

5 Developing a Support System

a) Explain what it means to have a support system available and easily accessible
for families (go blah..blah..blah.., again!)
 b) Develop a blueprint for a model support system for families in each of the five
areas of needs identified (group activity)
c) Discuss the findings

6 Conclusion

a) You summarize
b) Bow your head, and say a thank you!

Hope this suffices!

Regards
Ajit