Whether you just received your child’s diagnosis or you know something isn’t right and are awaiting answers, you may experience many different reactions and feelings. You may be afraid, sad, overwhelmed, angry, confused, or even feel relief at finally receiving some answers. There is no right or wrong emotion, and everyone is different in how they feel and handle their child’s challenges and diagnosis. Working through these feelings may not be easy, but can help with coping.
Caring for a child with special need can often be overwhelming. Whether you are waiting for answers, hearing a diagnosis for the first time, or already knowledgeable about your child and in a routine, everyone needs support from time to time. This support can be from someone watching your child so you can rest or run some needed errands, or from group support with others who are dealing with issues and feelings that may be similar to yours.
Caring for a child with special needs impacts the entire family. It can put a strain on relationships, finances, and an individual’s well-being. This section includes tips for staying organized, coping, reducing stress, finding out more information, and locating local support groups.
- Do not focus on guilt.
- Find time for yourself to relax and replenish your energy. Do something YOU enjoy, even if it does not include your family.
- Remember you are a parent, not a therapist or doctor. Even though you may help your child with his or her treatments or therapy, being a parent is your most important role.
- Live in the moment and focus on the good times. Keep pictures or a journal of those times to look at when going through a rough spot.
- Recognize and build upon your family’s strengths. Include and rely on the rest of the family when possible.
- Think about the positive ways your child’s illness or disability might impact the family. Has it brought you closer? Have you learned to communicate effectively and work together to resolve issues? Have you met new friends through support groups or elsewhere?
- Reach out to other parents and support groups. Knowledge and support can be gained and new friendships may be formed.
- Remember to breathe.
- Laugh, which can be the best medicine ever!
Organizing and Keeping Records
Keeping records is important for parents of any child. When you have a child with special needs, this is even more essential. Medical information should be kept together in a location for quick and easy access. This will help when you see new doctors, before “official” records are transferred or in emergency situations. Find a method you are comfortable using and will keep up with on a regular basis. Use different folders/boxes for more than one child. Information to keep should include the following:
- Emergency contact information.
- Contact information and dates of service for all doctors, therapists, dentists, schools and insurance. Keep a copy of insurance policies and cards as well.
- Dates of immunizations, surgeries, illnesses, and hospitalizations.
- Medication list with dosages. Start dates may be helpful as well as listing those medicines stopped with the stop date.
- Equipment, supplies, and vendor information.
- Education/school records – especially I.E.P., 504, and behavior intervention plans.
- Phone conversation logs for medical and insurance providers and school personnel.
- Any other information relevant to your child.
Medical appointments can be overwhelming but there are some things you can do to make them easier.
- Know regular and walk-in hours for each office.
- When scheduling an appointment, try to find a time that’s best for both you and your child. Some children have a more difficult time in the mornings, some in the afternoons.
- Schedule multiple appointments in one day if it is not too much on your child. Do this to save on gas, parking, and childcare for siblings. This may also reduce the stress from travel time and distance.
- Leave enough time for issues that may arise, such as traffic and parking.
- It may be helpful to call ahead to the office to see if doctor is running on time. This can be especially helpful if child does not do well with long wait times.
- Bring contact and medical information that you may need. Keeping an extra copy in your car or purse may help. Try writing information on index cards, punching holes on them and keeping them on your key ring.
- Keep a bag packed for doctor visits. Include snacks, drinks, toys and emergency medications and change for vending machines. Contact and medical information can also be kept in here. This way you will be prepared for emergencies, as well as regular appointments.
- Use a single calendar for all appointments. Write down contact information for each doctor on calendar for easy access. Color coding may also help you easily spot pertinent ones and important information.
- Know the prescriptions. Ask if a generic can be supplied. Clarify dosages and if the dosage is multiple times a day, ask if there is an equally effective prescription with less frequent dosing. Request a form of the medicine that is the easiest for your child to take, when possible (i.e. liquid as opposed to pills if your child has trouble swallowing or a tablet that can be easily mixed in food or drink). Understand special instructions, such as avoiding certain foods, sun, taking with or without food or in combination with other prescribed medications.
- Color code bottles and/or syringes.
- Prepare the day’s dosages in advance.
- Make a list of list of all your child’s medications, what time they are given, the dosage, and any notes regarding the preparation. Place on refrigerator or tape near area where medicines are stored.
- Keep a notebook of printed pages with list of medications, times prescribed, and times administered. There can be a section for notes that might include bad reactions and reasons for missed or late doses.
- Include prescription refills on calendar and in notebook. Try to list refill date a few days early to provide for pharmacy errors or out of stock orders.
Researching Information Online
Sources of content can be determined in part by the end of the web address. For example:
.gov (government owned)
.edu (educational institutions)
.org (usually non-profit organizations)
.com (commercially driven or for-profit)
- The owner of the site may not be the author of the information. The author’s name should be available. Consider the author’s qualifications for providing the information and if is it factual or opinion-based.
- Verify when the site and/or page was last updated.
Support groups can be found both on and off-line. You may want a group for a specific health issue or one for parents raising children with special needs. There are forums where specific questions can be asked and feelings can be shared. Communities may offer local support groups, as well. Inquire through local organizations such as The ARC, Social Services Department, Health Department or your pediatrician. Below are a few in VLAS’ service area.
» Farmville Area Support Group– Facebook page
Heart of Virginia Special Needs Support Group: Meets the first Monday of each month at the Church of Christ from 5:45-7:15pm.
The contact person is Karen Critzer at (434) 223-2384 or (434) 265-6838.
» PEATC: Local Support groups and resources
» Celebrating Special Children: Community Resources
» Our Kids: An online support group for parents of kids with special needs.
» Parent to Parent of NYS: Tip Sheets for Caregivers of Individuals with Special Health Care Needs
» Kid’s Health: Support for Parents of Kids with Special Needs
» Care.com: Special Needs Support Groups
» Women’s Health: Parenting a child with a disability
» Hopeful Parents: A blog for parents with special needs
» Finding a caregiver for a child with special needs: 12 key tips
» Complex Child E-magazine: A site with much information on caregiving