The upside of disability

The upside of disability
Posted on Wed 24 Oct 2018

Written by Jennifer Farmer, international guest writer, New England, USA

 

We entered a new world when Emma was born, we just didn't know it yet. It wasn't until she turned 15 months old that we had put enough of the pieces together to find out Emma had Cerebral Palsy. The diagnosis turned our world upside down, and we were immediately thrust into a world of therapies, specialists, tests, and organizations we never knew existed. We became experts very quickly about Hemiplegic Cerebral Palsy. Along the way there have been many ups and downs.

I'll never forget the day the words Cerebral Palsy were first spoken to us. That will go down as one of the most painful days of my life. However, the day Emma took her first steps is by far the most joyous day of my entire life. 

 

Finding the right care

One of the most important things we have learned is that finding the right therapists and specialists has made all the difference for our daughter. When it is time for a new brace, or a check up with her specialists, Emma looks forward to going the way she looks forward to a play date with friends. The therapists that worked with us during our early intervention program became part of our family.

Finding this amazing support team did not always come easily. One therapist early on was simply not a good fit for our family, so we made the uncomfortable decision to request someone different. Only the best care was acceptable for our daughter. The new therapist was a direct fit at a very critical time. Within a matter of weeks, Emma started walking.

Additionally, over time, we have lost a few key members to retirement or relocation, and of course the sad day that Emma phased out of Birth to Three (the early intervention program).  We never stop searching for the best fit for our family when it comes to her care.  At each new visit we ask ourselves, will this person provide the best care for Emma? Just as important, will they connect with her on a personal level?

Whether you are new to a diagnosis, or have been on the journey for a while, establishing and maintaining a great care team is an ever changing quest.

4 tips on how to find the best specialists and care for your family:

1. Turn to social media:  Online support groups on sites such as Facebook, are an immense source of support and information. Find as many groups that pertain to your diagnosis, and join! These groups are great places to ask for recommendations. We have found excellent specialists this way, and have saved valuable time by avoiding those not as highly recommended. Members of these groups truly want to help each other, and love to share their experiences both good and bad.

2. Treat your first visit like an interview:  Not only are you looking for the most knowledgeable person, it is important to know if they will be a good fit personally with you and/or your child. You need to feel totally comfortable asking questions and having an open line of communication. You also want your child to feel comfortable.  If either is missing, it might be best to find someone else.

3. Don’t be afraid to move on:  During our second in-home therapy visit, the therapist took a not- so- quick phone call about balloons for her daughter’s birthday party; right in the middle of our short 30 minute session. It didn’t take long for us to realize she was not going to be what our daughter needed. As awkward as it may be, moving on to someone you feel will give only the best care is absolutely acceptable. Ultimately, you are looking for someone who truly cares, and is totally focused on helping your child progress and succeed.

4. Consider traveling outside of your immediate area:  Don’t feel restricted to your local specialists. If there is a hospital or practice that specializes in your diagnosis, check out what they have to offer. If you have more than one specialist to see, you can schedule your appointments in one day. Additionally, there may be amazing therapy programs or clinical trials not available in your area.

 

Today Emma is a fun loving, typical 5 year old, who happens to wear a brace on her left leg, and maybe falls a little bit more often than her peers. I believe her incredible progress has much to with the amazing members of her care team that we have carefully selected over the years.  Families should always know that they never have to settle for less than the best when it comes to the care of their loved one.

A new way of life

We never expected this to be our world, but it has changed our family all for the better.  I have learned so much about how far happiness can extend, and how deep pain can actually run. Sometimes when life throws something difficult at you, a new path is also created. We adopted a whole new lifestyle with Emma’s Disability.  We learned about and applied for, the Lifetime Disability Pass to the National Parks.  With our first visit to a National Park, I realized just how amazing the connection to nature was as part of her care. Simply being outdoors provides opportunities for therapy in a natural and fun setting such as hiking, climbing, walking, and swimming. Emma’s disability has brought our family closer together, especially her relationship with her sister Addison, who is her biggest cheerleader. Siblings are often the unspoken heroes, and very important members of their care team.

 

Join our Online Community to build your support network and contact our expert team to find the right care.

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