A cerebral palsy diagnosis is very serious. When your child is diagnosed with CP, it will require a lifetime of care as well as compassion from the other family members. An upbeat attitude, acceptance of the unknown, and proper care and preparation are the keys to coping with your child’s diagnosis. You should also build a strong support system.
While cerebral palsy is life-altering and always heart wrenching for parents, there are still a range of options and approaches for managing your child’s development and maximizing their opportunities and well-being. Understanding the burdens of being a caregiver, educating your own family on what to expect are vital to carrying on. But how do you start?
Be prepared to meet the challenges head on
This means developing your own acceptance of the life that your child has ahead of them. Recognize that it will be hard, and come to terms with the fact that uncertainties with tragic results are a reality when someone you love is living with cerebral palsy. Accepting this uncertainty right away is the key to being able to effectively manage your child’s care.
Part of this mindset also means being practical in managing your expectations. Being a cerebral palsy caregiver comes with many challenges. For example, depending on your living situation, you may have to make disabled access modifications to your house. Roughly half of all people with CP will require a wheelchair or mobility aid. If that is the case for your child, you will need to ensure that your home is handicap accessible.
Extra responsibilities of taking care of a child with CP include:
- Getting out of the house often
- Maintaining consistent positivity
- Maintaining heightened awareness of food intake and nourishment
You will also want to make sure your child spends quality time with other family members and feels like a part of the family.
Sibling involvement and support
Raising a child with cerebral palsy means all hands on deck. Make sure your family is completely educated as soon as possible about what cerebral palsy is and what the likely limitations of your child with CP will be.
Older siblings need to be able to help out whenever possible, but it’s crucial that you don’t force your child’s siblings to become full-time caregivers. For starters, your other children still need to have a childhood of their own, and they need the freedom for their own personal growth and development.
Forcing too much parental caregiving responsibilities for a child with CP onto their sibling runs a real risk of breeding resentment over time. Remember, your children need to love each other, no matter what, and that burden is a top down priority. Try to spend one-on-one time with your other kids as well. They may feel like their needs come last because you’re busy caring for their sibling with CP
Cerebral palsy is not a death sentence, and you shouldn’t approach raising a child with CP with fear or dread. You can be creative with how you and your family manage your child’s care. If it comes down to modifying your home, get the whole family involved and make it a group activity. For inspiration, check out this DIY guide to making a disabled-accessible shower. Inject fun into the monotonous routines of care giving to stay active and positive.
You’re not alone
The chances of an infant being diagnosed with cerebral palsy is about one in 300, which means that 1) it’s more common than many of us realize, and 2) you’re not alone. Even with incredible involvement from your partner and loving support from your other children and family members, it can be absolutely invaluable to have a social network of individuals who are going through the same experience as you.
CP parent support groups and social networks are a valuable resource to take advantage of from the early days after learning of your child’s diagnosis. Not only can you learn from the experiences of other parents whose children have CP, you can make lifelong friends in the process.
If you live in a rural community or an area that does not have a robust special education system, involving yourself in CP support groups will mean your child can make friends with others who have CP. This can normalize the condition for them during their childhood.