Being a parent to a child with cerebral palsy can require more involvement than parenting a child without a disability. Your entire world changes the moment you find out your child has cerebral palsy. Sometimes hearing the diagnosis can be difficult. Other times it can bring a sense of relief, and you can move forward to help your child on their journey.
While I don’t have first-hand experience with being a parent to a child with cerebral palsy, I am a mother who has cerebral palsy. I have also gained insight from my own parents who raised me, and know many other parents who have children with cerebral palsy.
I compiled a list of 12 suggestions to help cope with life after a cerebral palsy diagnosis, and hope it will help you in this new (or old) way of life.
1. First and foremost, let your child be themselves regardless of their disability. Sometimes parents are too wrapped up in dealing with the cerebral palsy that they can forget that there is a person in that body. It is important for children to still have a childhood and to have fun, be loved, and be treated as your child.
2. Listen to your instincts. Sometimes parents get a gut feeling about their child, and it’s a feeling you just can’t shake. Trust it and explore wherever it might lead.
3. Teach independence as much as possible. Trust me, I know how hard it can be to watch your child struggle. I am not implying that a child should take on a task that they would not be able to complete on their own, or if it brings them to tears. However, teaching independence a little each day will make being an adult so much easier for them.
4. Encourage them to be their own advocate. A huge part of being the parent of a child who has cerebral palsy is advocacy. From day one, you are their only support and advocate to get what they need, want, and deserve. As they grow older, teach them to speak up and to tell others what they need, and what can help them. Unfortunately, cerebral palsy doesn’t disappear when you get older. Therefore, self-advocacy will help them and hopefully give you some peace of mind.
5. If you don’t like a therapist or doctor, please don’t feel that you are expected to remain with them. You have options available. Find someone who works the best with your child. It is important to find someone who can help achieve reasonable and helpful goals for health plus independence.
6. Be creative. Medical devices can be expensive and difficult to obtain. Don’t be afraid to think outside the box to create homemade remedies to make your child’s world more accessible.
7. Enjoy the small accomplishments as well as the big ones. We all wish that we didn’t have cerebral palsy to figure out, but we do. So instead of focusing on something major like independently walking, be excited over the small accomplishments as well. Celebrate small victories, be patient, and understand that some things may not be obtainable.
8. Ask for help. You don’t need to do this on your own, and it’s perfectly okay to ask for help. There are support groups, agencies, organizations, online support groups, grants and even your friends. You are never alone.
9. Enjoy your other kids, too. Don’t forget to be a mother to all of your kids, and encourage siblings to have fun.
10. Take care of yourself and give yourself some down time. Work out, read, take a walk, or watch a favorite television show. Remember that in order to take care of others, you need to take care of yourself first.
11. Always explore opportunities for your child to grow, gain experience, learn, and be whomever they choose to be.
12. Have fun and enjoy the moments. Cerebral palsy or not, they are your children, so hold on to each moment as long as you can. They grow up too fast.