Section 1: First Steps for Families

A few suggestions and a little encouragement for new parents, guardians, and families of children with special needs. 

A Trip to Holland

Suggestions for New Families

Recommended Reading

 

 

 

A Trip to Holland
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this.

When you are going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum.  The Michelangelo.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags, and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, "Welcome to Holland."

Holland? you say.  What do you mean, Holland?  I signed up for Italy!  I'm supposed to be in Italy.  All my life
I've dreamed of going to Italy.  But there's been a change in the flight plan.  They've landed in Holland, and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease.

It's just a different place.

So, you must go out and buy new guide books.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It's just a different place.  It's slower paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around and begin to notice that Holland has windmillsÉand Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from ItalyÉand they're all bragging about what a wonderful time they had there.  And for the rest of your life you will say, Yes, that's where I was supposed to go.  That's what I had planned.  And the pain of that will never, ever, ever, ever go awayÉbecause the loss of that dream is a very, very significant loss.

Back to top

 

 

 

Suggestions for New Families
By Jeanne McMullen, parent 

Lessons learned by a Pittsburgh mom of a child with medical and developmental needs

First Things First
This may be difficult if you are a perfectionist and like to clean your house every week, pay your bills early, and be on time and ready for everything - but it's important to learn to do first things first, or the things that must be done.  As for the rest, will the world collapse if you put things off for a day or more?  So what if your baby has worn the same sleeper for three days.  And if your mother-in-law remarks about the dishes piling up in the sink, thank her for noticing, and offer an apron.

Give Your Family Time to Adjust
Everyone handles life-changing events differently.  When your child has a special need, you may want to share your feelings immediately.  Your spouse, however, may not be ready to accept or talk about the situation.  Respect the different ways people have of coping.  Siblings, grandparents, and other family members also should be allowed to deal with your child's condition in their own ways.  Be there for each other, but give each other space when needed.  Instead, find a trusted friend, family member, or social worker whom you can talk to.  The important thing is that your child receives the necessary love and care he or she needs.

Ask for the Spaghetti
I often hear mothers of children with special needs complain, Everyone offers to help, but no one ever does anything.  Friends and family members usually want to help, but aren't sure how.  Take advantage when they ask.  A good reply to a general offer might be:  Thanks for asking. Can you pick up some milk and bread at the store for me on your way home tomorrow? or Yes, it would be wonderful if you could drive me to the hospital tomorrow morning; or It's been weeks since we've had a home-cooked meal.  You make great spaghetti!  Do you have the time to prepare some for us?

Combine Tasks
Learn to do two things at one time.  Return calls from family and friends while washing dishes.  Open your mail during lunch.  Read stories to your children during meals.  Even different types of home therapies for a child often can be combined - such as doing visual tracking exercises or practicing fine motor skills during breathing treatments.

Schedule Medical Appointments Carefully
As the day progresses, physicians' offices often fall behind on appointments.  If your child has frequent physician visits, the waiting can be exasperating.  Try to make your child's appointment the first one of the day - or the last (you still may have to wait, but at least the better half of the day will have been yours).  Also, when you schedule an appointment, get the confirmation in writing.  You may need this when you show up at the physician's office and the receptionist has no record of your appointment.

Relax
What helps you to relax?  Do it - and regularly.  The stress of caring for a baby or toddler can take its toll on any parent - and is compounded when a child has special needs.  Have your spouse give you a massage, or grab a set of headphones and disappear for a while with your favorite music.  Taking a brisk walk can clear your mind - and it's healthy, too.  If you can't afford a babysitter, put your child in a stroller and bring him or her along for the ride (the baby will love it). 

Find Some Normalcy
This is easier said than done.  Therapies, illnesses, and hospitalizations get in the way of normal family activities.  But try to find time for a trip to the park, zoo, or some other enjoyable place, even if it's only a short visit.  This brief respite will help you feel better, and it's a delightful diversion for a child who spends most of his or her time in medical settings.

Make Time for Yourself
Go out on a date with your spouse or get together with friends at least once a month.  If finding a babysitter is impossible, contact a respite program in your area - or consider swapping sitting services with another family.

Go Easy on Yourself
You may feel guilty for not having recognized or addressed your child's problems earlier, or that you're not doing enough for your child or other children.  You may get frustrated every time you arrive late somewhere - no matter how hard you've tried to be on time.  Also, see if you need to ease up on your expectations for your child.  Help your child move step-by-step toward his or her goals, even if the steps seem less grand than the leaps you've dreamed about.  And always let your child know that you love and are proud of him or her.

Take One Day at a Time
Thinking about the future can be overwhelming.  You may wonder, Will my child thrive?  What will she be like when she grows up?  Who will take care of him when he's an adult?  Many of these questions and fears are premature, and worry wastes energy.  Take one day at a time.  Consider doing a few practical things that can help you feel more in control, such as setting up a trust fund for your child, or writing a will.  For the most part, though, focus on the problems of today - which are more than enough.  Tomorrow will have its own needs, and you can deal with those when they come.

It may help to keep inspirational messages in your wallet.  When you find yourself worrying about the future or sitting in the ER for the umpteenth time, read your special prayers and poems.  And have faith.  Miracles can and do happen!

(Jeanne McMullen is the mother of Caitlyn, age 13, who has CHARGE syndrome, a rare genetic disorder.  Jeanne, her husband Michael, and Caitlyn live in Lincoln Place.

Back to top

 

 

 

Some Parent-Recommended Reading

Carnegie Library of Pittsburgh has hundreds of books on disabilities, written for both children and adults.  And access to the books is easy. Through its 19 neighborhood locations, including Main Library and the Library for the Blind and Physically Handicapped, Carnegie Library of Pittsburgh offers books, DVDs and resource materials on disabilities, written for both children and adults.  In addition, 45 public libraries throughout Allegheny County are connected to Carnegie through the Electronic Information Network or EIN. 

When young children are experiencing difficulties in their daily lives, reading about characters with similar problems can help them cope. Experienced therapists use children's books to solve emotional problems in a technique known as "bibliotherapy."  Carnegie Library  of Pittsburgh has created an online Bibliotherapy Bookshelf  to help young children cope in today's world.  

The Bibliotherapy Bookshelf includes some of the titles owned by Carnegie Library of Pittsburgh that may be useful for caregivers, teachers, parents, and other concerned adults working with preschool children. The titles recommended are not intended to replace professional counseling but rather to help ease the concerns and fears of young children in today's world. Not every book is available at all locations, but any title can be requested. If a book is not available at your location, it can be sent to directly to your home library at no cost. 
In addition, Carnegie Library of Pittsburgh's Library for the Blind & Physically Handicapped provides free library services to eligible Western Pennsylvania residents with visual or physical disabilities.  Audio books and magazines, equipment to play the recordings, large print books, described videos and Braille materials are mailed and returned postage-free to registered readers.

Carnegie Library of Pittsburgh's Web site:  www.carnegielibrary.org http://www.carnegielibrary.org
Bibliotherapy Bookshelf Web site:  www.carnegielibrary.org/kids/booknook/bibliotherapy

Library for the Blind and Physically Handicapped, 412-687-2440 or 800-242-0586

 

 

 

Other Books Recommended for Parents of Young Children with Special Needs:

After the Tears: Parents Talk About Raising a Child with a Disability
Robin Simons, Harcourt Brace Jovanovich, San Diego, CA.  1987.

A Difference in the Family: Living with a Disabled Child
Helen Featherstone, Penguin Books, New York, NY.  1981.

The Early Intervention Dictionary: A Multidisciplinary Guide to Terminology
Jeanine G. Coleman, Woodbine House, Rockvile, MD.  1993.

Children with Autism: A Parents' Guide
Michael D. Powers, Woodbine House, Rockville, MD.  1989.

Children with Cerebral Palsy: A Parents' Guide
Elaine Geralis, Woodbine House, Rockville, MD. 1991.

Children with Facial Differences: A Parents' Guide
Hope Charkins, Woodbine House, Rockville,  MD.  1996.

Children with Mental Retardation: A Parents' Guide
Romayne Smith, Woodbine House, Rockville, MD.  1993.

Children with Tourette Syndrome: A Parents' Guide
Tracy Haerle, Woodbine House, Rockville, MD.  1992.

Children with Visual Impairment: A Parents' Guide
M. Cay Holbrook, Woodbine House, Rockville, MD.  1996.

Differences in Common: Straight Talk on Mental Retardation, Down Syndrome and Life
Marilyn Trainer, Woodbine House, Rockville, MD.  1991.

"In Time and With Love: Caring for Infants and Toddlers with Special Needs,"
Marilyn Segal, New Market Press, 2001

" A Different Kind of Perfect: Writings by Parents Raising a Child with Special Needs," 
Dowling, Nicoll, Thomas,  Trumpeter,  2006

"More than a Mom: Living a Full and Balanced Life When Your Child Has Special Needs,"
Amy Baskin, Heather Fawcett, Woodbine House, 2006

"Nobody's Perfect: Living and Growing with Children Who Have Special Needs,"
Nancy B. Miller, Paul H. Brookes, 1994

"When Your Child Has A Disability:  The Complete Sourcebook of Daily and Medical Care,"
Mark L. Batshaw, Paul H. Brookes, 2001

 

 

 

Recommended Magazine

Exceptional Parent is a monthly magazine that contains articles and information for parents of children with special needs of all types.  To subscribe, call 800-562-1973.

Back to top