 |
 |
| My Sister, My Friend |
|
(Back to Support Networks Page)
Multiples with Special Needs
You’ve given birth and have now been told by a medical professional that you have one or more children with a special need or needs. What do you do now? Where can you turn for help? How will you cope?
This is a very difficult time of adjustment. This is a time to adjust your expectations and take on new ones. Spend time with each other and your children. Recruit promises of help and support from family and friends. Take advantage of all help offered to you and your family. Consider joining the Multiple Births Canada Chapter near you. You’ll find other parents who have been through (or are currently going through) exactly what you are. There is great comfort in making these connections.
Multiples are automatically at “high risk” for problems during pregnancy and birth, due to sharing (often unequally) of maternal nutrition and lack of growing space. This also means that twins and higher order multiples have a relatively high incidence of prematurity, low birth weight and other attendant problems. Some problems may have long lasting effects, resulting in children with special needs, handicaps or disabilities.
In addition, there are disabilities that may have nothing to do with being a multiple and be solely due to the child’s genetic make-up.
Whatever the cause of a child’s disability and whatever its nature, it presents an additional challenge to a family already handling the pressures of raising two (or more) young babies. Dealing with all of these challenges will not be easy.
Here are some words of advise from parents who have gone through what you may be facing, and want you to know what helped them.
- Be patient
- Keep a sense of humour
- Take time out
- Give a little of your time to yourself and your partner
- Take one day at a time, with a hug at the end of each one
- Talk to others
- Don’t be afraid to talk about your “special children”
- Always remember who gave support and give it to someone else
- Don’t blame yourself. Guilt is a waste of time and energy
- Accept the challenge, then your child will learn to accept it too
- Don’t create problems. Many problems arise from the expectations of others
- There is always “some day”
These are sound and practical bits of advice from parents who have already walked in your shoes.
“Remember the little achievements. Never take ‘no’ for an answer, especially when you know what you ask for is right and fair.”
“Look upon your multiples as being very fortunate to have each other,” a parent writes. “They will become richer due to this unique situation because the care they show for each other will be spread to those around them throughout their lives.”
Some Recommended Readings for Special Needs Families
How It Feels To Fight For Your Life by Jill Krementz. (1989, Jill Krementz, Inc. Little, Brown, and Company, Boston, Toronto, London )
"This is not a book about children who are dying. It is a book about kids who have faced, or are still facing, serious illnesses and disabilities. They are children who bring to their fight a special attitude that has enabled them to triumph over terrible odds. They have all realized life is fragile and unpredictable, but they don't feel sorry for themselves and they don't want us to feel sorry for them either." (p. IX)
Our Brother Has Down's Syndrome: An Introduction for Children by Shelly Cairo. (1985, Shelley Cairo. Annick Press Ltd., Toronto, Canada M2M 1H9) Identical twins, Tara and Jasmine, talk about their little brother Jai. Beautiful photographs of Jai illustrate the story. He's a hard kid not to fall in love with.
Someone Special Just Like You Text by Tricia Brown, photographs by Fran Ortiz. (1982, 1984, Tricia Brown and Fran Ortiz. Henry Holt and Company: New York) This is a book for all children, which shows it is not the children's differences that are important, but rather the fun of childhood.
About Handicaps by Sara Bonnett Stein. (1974, Sara Bonnett Stein. Walker & Company: New York, New York)
A unique book written for both parents and children. The story, in large print, accompanies full-page photographs of two boys, Matthew and Joe. The parent's guide is written in the margin. Joe has cerebral palsy and Matthew, in the beginning, does not understand him. We discover through Matthew's behaviour he is afraid that his legs may become "awkward" like Joe's. The story gives a non-judgemental approach to help children who are physically challenged.
And Don't Bring Jeremy by Marilyn Levinson, Illustrated by Diane de Groat. Text 1985, Marilyn Levinson. Henry Holt and Company: New York
This book describes the some times-difficult decisions and dilemmas faced by siblings of special needs children, in a novel for young adults.
Parenting Plus: Raising Children With Special Health Needs by Peggy Finston, M.D. c. 1990 Peggy Finston, M.D. Dutton: New York
A well-written and easy-flowing book. Dr. Finston's son Danny developed behaviour problems due to allergies to certain foods and pollutants. In her struggles to identify the root of Danny's problems, she learned a great deal about children with special health needs. The book chronicles stories of other children with diabetes, rheumatoid arthritis, asthma, C.P., fragile X and several other special health problems affecting many children. She offers advice on identifying the problem, dealing with guilt, fostering independence, and learning to live with the health problems. The chapter dealing with parent/professional relationships is well worth reading.
The Family Book: A Resource for parents who have learned their child has a mental handicap, by Margaret Coshan and Miria Ioannou. (1986, G. Allan Roeher Institute)
Fifty-two pages of information including many suggestions of where to go for help, and what types of help is out there. Covers all of Canada. G. Allan Roeher Institute, Kinsmen Bldg., 4700 Keele St., Downsview, Ontario, M3J 1P3
In Time and With Love: Caring For The Special Needs Baby by Marilyn Segal, Ph.D. c. 1988 Marilyn Segal, Ph.D. Newmarket Press: New York
Although not written specifically for twins, this book is ideal for parents of twins where one or both babies have special needs. Deals with all types of babies including babies without special needs. Gives advice for babies who are visually impaired, hearing impaired, physically impaired, Down's Syndrome, and babies who are hypersensitive or tactile defensive. Covers the adjustment period, everyday living, playing and learning for your babies, and gives advice about major decision making. This book can be read straight through or used as a quick reference book as problems or questions arise.
Website Links for families with Special Needs
To contact the Chair person of the Special Needs Support Network, e-mail specialneeds@multiplebirthscanada.org. If you are interested in assisting with this network, please contact the Chair person.
|
Information Circulars
