Diagnosis: What does it mean?

You’ve been told that your loved one has Cerebral Palsy…NOW WHAT?

Emotional Response:

First, it’s OK to be sad, it’s OK to mourn the loss of the life you considered normal, and what you envisioned your loved one’s life to be. Many draw parallels to experiencing the stages of Death when coping with a Cerebral Palsy diagnosis. It’s normal, and don’t think you are feeling anything out of the ordinary, or that you are letting your loved one down.

There is no one way to deal with a life changing event like this, but it’s important to accept the diagnosis, and commit to doing what you can for your loved one. Everyone will get there differently – your spouse may get there differently and on a different timeline than you do. As you reach acceptance, you reach a sense of doing what you can to help your loved one manage life with CP.

I remember driving home from the doctor’s office, after being slapped in the face with the diagnosis, and mourning the loss of Nicholas’ life. It was like a part of him had died. Then we looked in the rear view mirror, and there he was, smiling back at us, just like he did on the way to the doctor. Our mourning continued, but at that moment the spirit of Nicholas was not diagnosed with anything, just the physical shell that represented it. Don’t get me wrong, there were ranges of emotions – many frustrated, angry days filled with denial. But that was our first step toward acceptance.

While you are working through this process, it’s easy to forget that your loved one is no different than they were the moment before they were diagnosed. They still need and want your love, and they need you to be there for them. It’s not fair, it’s not easy, but you need to be there for them in every sense.

It’s important to recognize that you may need some assistance in working through your emotional state. Faith Leaders, as well as Social Psychologists are two good places to start. If you don’t know where to go, contact your Doctor or Early Intervention Coordinator, or contact us and we’ll help you through it.

We have also set up a CP blog, with a new diagnosis folder. Please comment in there, as we moderate all blogs on the site, and will be sure to comment there as well.

Treatment Options:

Once diagnosed, you will receive a list of treatment options. Review them, ask questions. Also, take a look at our list of both standard and alternative treatments. We encourage you to know your options for treatments, and ask for feedback from more than a couple Medical experts on the topic (contact us (insert hyperlink) if you need a place to go for additional advice). Our recommendation is you don’t just take your Doctor’s plan and advice.

Plan of Attack:

Once you accept the diagnosis, and you know your options, it’s time to pick a plan, and how you are going to commit to it. Typical plans at minimum include multiple weekly sessions of Physical, Occupational, among other “specialty” therapies (i.e. speech, swimming, etc). Take on only what you can fully commit to, and add on as you can. Repetition is an important aspect of any therapy.

Balancing Therapies with “Kid time” will be a struggle, especially if there are other siblings. Human nature tells us to do everything we can to put our kids in the best position for success in life. It’s a tough concept, but more therapies doesn’t always mean more success. Kids need time to be kids, in whatever form they are able to show it. Whether it’s watching a TV show, going to the store, or going to the playground, we have found allowing “kid time” makes the “therapy time” higher quality.

Again, there is no right answer with this, but it is something to consider and be cognizant of. Don’t be afraid to tweak your plan slightly to see what works best for you and your loved one.

Help:

In most cases, you will need help at some point as you deal with life with CP for your loved one. It’s OK, even for the most independent of us! It could be babysitting help, or help working with a flexible job schedule, or help managing life with the hectic lifestyle of CP.

There is also ongoing support emotionally – for you, siblings, and in some cases, your loved one with CP. See our support section for details.

Support

Church/ Faith Based Organizations:

Although many struggle with their faith after events in life such as a CP diagnosis, this is a good place to start. If you are looking for support, contact us, and we’ll help find help.

Professional Assistance:

Your Doctor should have professional resources available in offering support to you. Whether it’s a support group or a Professional, don’t be afraid to talk about your situation. Talking with those that are living through it as well is a good source.

Online Support Blog:

We are building an online support blog made up of parents of kids with CP. Regardless of your situation, someone will have been there or done that already, and can offer support. Come back often, as there may be questions that come up that you can help with!

Health Insurance

Unfortunately, due to today’s health insurance limitations, some assistive care or alternate treatments may be limited dependant on the type of Health insurance you have. This is an important administrative function of CP that will add stress to your life if you are not diligent.

State Funded Health Insurance:

n most states, the diagnosis of CP qualifies you for automatic enrollment into a “medacaid” type insurance. It’s not because you need it, but it’s typically the way subsidized therapies are paid for. Don’t refuse it! As part of this, you add some additional paperwork and filings that are required, and another thing to keep on top of. Again, a vital piece of the treatment plan, and one that is well worth the hassle.

HMO/ PPO:

Keep the rules of your provider in mind when looking at new treatments, and we recommend requesting coverage for any treatment you deem necessary. There are no rules to follow, as each provider considers treatments and devices differently. Don’t be afraid to fight for what you need. Contact us (insert hyper) if you are looking for help on how to do this, we have some experience!