For some parents, hearing the words “your child has cerebral palsy” for the first time is a huge shock. For many others, it only confirms what they have suspected for a long time. Still, some parents are relieved to hear the news; they knew something was wrong, and now that they know what it is, they can begin to take action.
Whatever your reaction was, once you get the diagnosis of cerebral palsy, there is no looking back. Armed with a diagnosis, it’s time to look toward the future and tackle the new challenges and opportunities ahead. Because cerebral palsy is such a broad term with a wide range of outcomes, it can be hard to know what to expect or where to begin. This list should get you off to a great start.
1. Do your research
You’re about to learn a whole new vocabulary of medical terms, assistive devices, and acronyms for anything and everything. Here is some information about the diagnosis, but additional research may be helpful. You’ll feel better if you get a better understanding of what you’re dealing with.
2. Build a strong team
You are going to deal with a lot of doctors and therapists. Most children with CP have frequent visits to the paediatrician. Your child may need surgery or medical procedures done. It is also typical for children with cerebral palsy to have a physical therapist, occupational therapist, and speech therapist. Depending on your situation, you may explore nutritional therapy, water therapy and a whole host of other therapies that you have probably never heard of! There is no cure for cerebral palsy, but by taking certain measures from an early age, you can dramatically improve your child’s quality of life. Finally, be sure to look into early intervention services in your area and understand that acting now can make a major difference later in your child’s life. So don’t let the opportunity slip by.
3. Always remember you are part of a network.
You are not going through this alone. Luckily, the disabled community tends to be very active, supportive, and welcoming. It’s like you just gained access to an elite club. Plus, there are some issues that come with raising a special needs child that your friends won’t fully understand unless they have been through it too. Our Facebook page is a good place to start, but check out local groups or organizations, too. You should also embrace the various online community of bloggers on Cerebral Palsy!
4. Don’t forget to care for yourself
Your child’s needs are important, but so are yours. Sometimes you might feel guilt, shame, frustration, anger, hopelessness… and that’s okay. If you need to leave your child with a babysitter or a family member in order to take a day off once in a while, that’s fine! A happy caretaker is a good caretaker. If you can find little things that bring you peace, whether that means going for a run or eating a king-sized meal, that is also fine.
5. This thing is going to change your life
Whatever assumptions you had when you were planning for a healthy baby, put them aside. From baby’s first steps to playgroup to graduation, and marriage, the path your child is going to take will probably be very different from what you imagined. That’s not to say they won’t accomplish the same things – depending on their situation they may or may not be able to do all of the above – it just might take them a little longer or a little more effort to get there. Try to stay open minded about whatever kind of life is in your child’s future.
6. It will be Okay
This marks the beginning of an incredible journey. Through all the struggles, you will find unbelievable benefits. You will never feel more loved or needed than while caring for a child with cerebral palsy. It will be more rewarding than you ever imagined and you are going to learn a whole lot about yourself, true friendship, hard work, and unconditional love. Welcome to the world of special needs parenting!
Antonia Lloyd-Davies - Courtesy: Benola Cerebral Palsy Initiative