Advice For Parents With Children Who Have Disabilities

Being a parent to a child with a disability takes some extra resources and energy. From the moment a parent hears a diagnosis, the entire world changes. Sometimes hearing the diagnosis causes difficult emotions. Parents seek advice from others to help in the journey.

I didn’t experience being a parent to a child with cerebral palsy. Parents shared with me their suggestions and advice. I learned from my own parents. Read my list of suggestions that I hope will help you on this new (or old) way of life.

Suggestions For Parents

1. Let your child be defined by their personality. Sometimes parents are too wrapped up in dealing with the cerebral palsy that they forget to let the child be a child.
2. Listen to your instincts. Sometimes parents feel gut feeling about their child. Trust and explore wherever it might lead. 
3. Teach independence. Trust me, I know how hard it is to have to watch your child struggle. I don’t mean to make them do it by themselves if there is no way they can or it brings them to tears.  Teaching  independence a little each day creates an independent adult.
4. Encourage them to advocate.  A huge part about being a parent with 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 not be shy to tell others what they need and what can help them. 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 obligated to remain with them. Ask the advice from others. You have options available and find a therapist that works the best with your child. Find one that can help achieve reasonable and helpful goals for health plus independence.

Think outside the box

1. Be creative. Medical devices are expensive and difficult to obtain. Don’t be afraid to think outside the box to create homemade remedies to get the job accomplished.
2. Enjoy the small accomplishments with the big ones.  So instead of focusing on something major like independently walking, be excited over the small ones as well.
3. 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.
4. Enjoy your other kids too. Try giving everyone attention to encourage sibling relationships.
5. Take care of yourself and give yourself some down time.   Work out, read, take a walk or watch a favorite television show. Remember to take care of others that you need to take care of yourself first.  
6. Always explore for opportunities for your child to grow, gain experience, learn and be whomever they choose.
7. Have fun and enjoy the moments.  Children grow up too fast. Don’t miss the precious memories.