Parenting a Child With Special Needs
"We have 'normal' kid issues on top of special needs issues."
A child with special health care needs can have additional issues to manage. These issues may be related to the condition, medication or the child's development. Parents in the Building on Family Strengths Project said they faced challenges with discipline, attachment and parenting of siblings. They also struggled with conflicting expectations of their child, at times expecting more and sometimes less of their child with special needs.
Strategies
Parents stated that raising a child with special needs is a journey. They said they learned what worked for their child and family over time. Strategies they found helpful include:
- Include your child in managing the condition - take the lead from your child in terms of involving him in his own care, let your child make choices, let your child ask their health care provider why they need the procedure, have your child make a list of questions for their health care provider, provide opportunities for new achievements, talk to your child about their diagnosis, teach them when and how to tell others about their diagnosis
- Use written schedules - have a white board to keep track of all appointments, keep a large day-timer and put everything in it, and take it everywhere you go, use a laminated calendar for the whole family's schedule, keep lists on the refrigerator, keep the medication schedule on the computer, use a notebook for information management
- Shift your perspective - remind yourself how great your kids are and how great they're doing, use humor, don't assume that your child can't do something
- Be positive - pick out positive things about your child, name them and praise them, remind yourself how much you've done for your kids, use positive self talk such as telling yourself "I am managing it!"
- Be part of a community - find resources for your child (support groups, online groups), look around for a school where you are wanted and you fit in, build a safe friendship circle of people who accept and respect you and your family, find ways for your child's siblings to meet siblings of other children with special needs
- Support siblings - let siblings mature at their own pace, be sure to spend time and have activities with siblings, introduce them to siblings of other children with special needs, ask siblings how they would handle a situation if it were them
- Set aside family time - take family outings to the zoo, camping, or picnics, do an art project with your kids, play music or sing together, eat dinner as a family
- Become an advocate - work with others to treat your child with dignity and learn about your child's condition
Reflect and act
It may help you to reflect and explore the challenges you experience parenting a child with special health care needs. You can use these questions to help you think about some of the ideas and strategies that you would like to try.