[ St. Joseph's Hospital ]
A guide for parents and families with Special Babies from birth to 2 years old
Special Babies Have "Special Needs"
Describing Your Baby
Other Health Professionals
Caring for Special Babies at Home
Daily Living with your Special Baby
Services for Special Babies
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Introduction Special Babies Have "Special Needs" Describing Your Baby Doctors Other Health Professionals Hospitals Caring for Special Babies at Home Daily Living with your Special Baby Services for Special Babies The St.Joseph's Hospital Community Resource Manual
   Daily Living With Your Special Baby

How to cope with many appointments

When you are the parent of a special baby, you probably spend a lot of time attending appointments.  Keeping these appointments may be very hard, tiring, and frustrating for you and your family.  You may have other children to care for.  You may not have transportation to the hospital or clinic.  You may have a job which prevents you from taking time off.  You may find it hard to find money for babysitting or transportation.

The appointments may be hard for your baby too.  His/her schedule of eating, sleeping and treatments may often be interrupted by these visits.

It is very important that all appointments are kept for your baby.  The following ideas to make appointments easier come from other parents.

Keep notes:

  • Always carry a calendar or book with you to record appointments.  If you use a book, there will be room on the page to write down the questions you have for that appointment and a few notes about what they tell you about your baby's status or progress.

  • If your calendar or book has all your baby's appointments, you can avoid making conflicting appointments.

  • If you need to travel far for appointments, try making several on the same day.  Your appointments will usually be booked this way when you attend a clinic.

  • Tell the person who makes appointments what time is best for you.  Many try to meet your requests.

  • To avoid fatigue, spread out appointments so there is only one or two a week.
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To take time off work:

  • ask for a vacation day from work for appointment days

  • some companies let parents use sick days to take care of a child

  • if you can afford it, ask for a day off without pay so you can save vacation time for a real holiday.
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To arrange special transportation to appointments:

  • call your local handicapped transportation service.  Explain your situation carefully.  You may have to fill out forms for this service and your doctor may have to fill out part of them, so plan ahead

  • ask a friend to drive you and help with equipment and supplies

  • if you cannot leave work, ask a trusted friend, relative or babysitter to take your baby to appointments.  Send written information, your list of questions and a phone number where you can be reached during the appointment.  Ask the health professional to call you after the visit.
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To arrange babysitting for other children:

  • ask a friend, family member or neighbour to babysit your other children

  • if you do not have money to pay friends to babysit, offer to babysit his/her child an equal amount of time.
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To prevent you and your baby from being hungry or stressed:

  • schedule baby's appointment early in the day or after nap times

  • find a private spot for breastfeeding

  • arrange a special place for lunch to get away from the clinic

  • spend some quiet time in a library

  • check to see if there is a playroom available for an older baby

  • pack a travel bag or cooler with drinks, snacks and toys

  • bring drinks and snacks to save money

  • bring snacks you and an older baby can share eg., fruit, cheese, crackers, cereal

  • bring along special toys and books your baby likes

  • bring something new or different that your baby has not seen

  • take siblings along if they are a source of comfort to your baby

  • ask for a hospital volunteer to stay with your baby while you go to the washroom, take a stretch, or get a drink.
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Parent and Family Support Groups

Parents have suggested the following ways to find support groups:

  • call local disability help lines

  • look up community information in libraries, resource centres in hospitals, clinics and health units

  • contact Community Health Centres

  • talk to an Easter Seals Nurse

  • ask parents and people you meet

  • look in your local newspapers -- community calendars list, what groups meet and when.
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Advice from other parents and families

  • collect business cards

  • take breaks from having help without losing services

  • have both parents attend as many appointments as possible

  • take care of yourself: swallow your pride and accept help when it is offered

  • no support group? Find a person who has a similar child.  Share your information and support each other

  • don't act on other's advice without thinking.  Don't believe everything you hear or read

  • help family and friends understand.

Try not to expect your special baby to become normal.  Don't try to change him/her into something he/she is not. They are themselves because they have special needs.  "I love my baby because he/she is special".

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Reading sources

     Public Library:  Visit your local public library.  Ask the librarian to help you find books, information and resources about babies like yours.  Hospital or university libraries may also be helpful.

     The following organizations specialize in information about children with special needs.  You can contact them and they will send you a catalogue of the books, articles and resources they have available.  You can order material from them through the mail.

Parry Sound Books
The Beatty Building
26 James Street
Parry Sound, Ontario
P2A 1T5   (705) 746-7625

Parent Books
21 Harbord Street
Toronto, Ontario
M5W 1H6   (416) 537-8334

The Easter Seal Society, Ontario Resource Centre
250 Ferrand Drive, Suite 200
Don Mills, Ontario
M3C 3P2   (416) 421-8377
Fax:  (416) 696-1035

Bloorview McMillan Children's Centre
Lending Library
Sheppard Avenue
Toronto, Ontario

The Exceptional Parent Magazine has good articles as well as "Parent Search" and "Parent Respond" columns.  Twelve issues per year cost about $39 Canadian.  Their mailing address is:

P.O. Box 3000, Dept EP
Denville, NJ 07834
or: call (201) 634-6550

The Exceptional Parent Library also has a large selection of books which can be ordered from the address below:

Exceptional Parent
Dept. EPCAT4, P.O. Box 8045
Brick, NJ 08723

A Starting Point: A Guide to Services for Parents of Children with a Disability, 2nd edition (1993) is available for parents living in Hamilton-Wentworth, Haldimand, Halton and Brant regions of Ontario.  This superb booklet gives parents specific information and contacts about local services.

Call: Chedoke Child & Family Centre
     (905) 521-2100, ext. 77215

 or: The Easter Seal Society
     (905) 385-5389

Ask the Easter Seal Society or any Child Development Workers in your area for similar booklets as many communities may have produced these.

Association for the Care of Children's Health (ACCH)
7910 Woodmount Avenue, #300
Bethseda, Maryland, USA 20814
(301) 654-6549

Canadian National Institute for the Blind
(CNIB) Lending Resources

The Ontario Association for Community Living (OACL) have available resources and also hold workshops and conferences throughout Ontario.  Their provincial address is:

Ontario Association for Community Living
(OACL) Resource Centre
240 Duncan Mill Road, Suite 403
North York, Ontario   M3B 1Z4

OACL also has regional offices throughout the province.  You can find your local office in the phone book.

The Internet - use the "search" function using labels, diagnoses or other terms which may bring forward information onto the computer screen.  Many larger communities or libraries can provide a computer for the public's information.  You can use the Internet to connect with other parents of special babies.

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