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 pediatrician. 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, aquatic therapy, hippotherapy, and a whole host of other therapies you’ve 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. Here are some explanations about different treatment and therapy options. If you are looking for recommendations for therapists, doctors, products, or any other type of cerebral palsy resource, our massive survival guide has a searchable database where people post ratings and reviews of their favorite resources. Finally, be sure to look into early intervention services in your state. Acting now can make a major difference later in your child’s life – don’t let the opportunity slip away!
3. Medicaid is Your Friend
Even good health insurance will only begin to cover the costs of raising a child with cerebral palsy. There are state programs that allow special needs families to waive the income qualification requirement to enroll in Medicaid. This is something you should look into as soon as possible because there is often a long waiting list. Check out the policies and procedures for enrolling in Medicaid in your state as soon as you can!
4. Consider Taking Legal Action
Cerebral palsy can be caused by a number of different things before, during, and after birth. Many of these cannot be prevented. If, however, you suspect your child’s cerebral palsy was caused by a preventable birth injury or other medical error, you should speak with a medical malpractice lawyer about your case. You may be able to pursue legal action and obtain a settlement to help provide a more comfortable life for your child. Here is some information on legal rights and help.
5. Remember… You’re 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 and forum are good places to start, but check out local groups or organizations, too. Or, embrace the online community of bloggers!
6. Don’t Forget to Care for Yourself
Your child’s needs are important, but yours are too. Sometimes you might feel guilt, shame, frustration, anger, hopelessness… and that’s okay. If you need to leave your child with a sitter or a family member and take a day off once in a while, that’s fine! A happy caretaker is a good caretaker. If you can find the little things that bring you peace, whether that means going for a run or eating a king-sized candy bar, seize them.
7. This is Going to Change Your Life
Whatever assumptions you had when you were planning for a healthy baby, put them aside. From first steps to little league to prom, 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.
8. 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 ton about yourself, true friendship, hard work, and unconditional love. Welcome to the world of special needs parenting.
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