- Document! I've used this blog to document what's happening with Luke. It helps hold me accountable to learning all I can so I can write about what's going on with a certain level of accuracy. It helps me to keep all of the details straight and to know exactly when something has happened. And it's helped me to communicate with loved ones, helping them to be up to date with his progress. I think it's also helped to keep me from being that annoying person on Facebook writing a status update once per hour. If someone wants to know what's up, they can read the blog, if not, I don't have to be responsible for pushing it down their throat! For the instances that I feel it's appropriate to mention something on Facebook, I can share a short snippet of what's up and attach a link to the blog for folks to read in more detail if they are interested.
- Keep a calendar. After Luke was born, I purchased a Vera Bradly 8 x 5 inch zip up wallet for myself... I specifically chose this particular one because it will fit a generic pocket size calendar inside and I can zip it all together to keep it closed. I can move my wallet and calendar from my purse to my diaper bag to my computer bag, etc and always have our schedule, check book and credit cards handy. I've also copied all of the names, emails and phone numbers of our specialists, therapists, pharmacies, support groups, etc into the back of the calendar into the contacts section so I always have those numbers handy if I need them while out and about.
- Ask questions! Don't understand something? Ask! We are spending lots of money to pay the people who are helping Luke and we are deserving of their time. I try to write questions down as they arise and keep them handy when heading to an appointment. If I had a question while Luke was in the hospital, I learned to write it on the board in his room.... it was a place that his doctors always looked and it helped to keep the questions from fleeing me when they would ask "Do you have any questions?".
- Research! But don't research too much! The internet can be your best source of information and also your worst enemy! When I've found something I want to learn more about, I research it to learn as much as I can, but before self diagnosing our son, I've learned to share the general concept with our doctor and ask them to educate me on how the idea applies (or doesn't apply) to Luke. There are some crazy people out there and they publish some goofy stuff on the internet....
- If you have an instinct about something, don't give up until you're satisfied with either the response you get or have been educated to think differently by someone who has real facts to back up their opinion. If you aren't satisfied, ask someone else. Especially in the hospital, if you feel strongly about something (within reason, of course), ask everyone you can until you get the response you believe you need.... even if that means every nurse that gets assigned to you, every staff doctor or every resident until they approve the test, a support therapy, a medication, etc. If whatever you believe your child needs doesn't work, what are you out? Your pride may be a little hurt, but better safe than sorry and peace of mind is a wonderful thing when your child is sick.
- Stay on top of the people who you are paying to help you... doctors, nurses, secretarys, etc. If you need something, don't rely on them to just take care of it. Call back the next morning if you haven't heard anything. Ask who you are speaking to and write it down. If they don't give you the answer you need, talk to their manager. There is no need to be disrespectful, but your child is #1, don't forget it.
- Find a support group and ask for their advice. I've found a number of closed support groups on Facebook that have helped connect me with moms dealing with the same challenges with children the same age. We live in a rural community and the issues that have presented themselves in our situation aren't really common amongst our relatively small population so it's been great to find people that understand what we're dealing with.
- Love your child! Hug, cuddle, snuggle, play with, talk to, bathe, massage, kiss, and do whatever else you need to do. It works. Let your child know that your love will help them grow, learn and be safe.
19 February 2013
Being your child's best advocate
One of my biggest take aways so far from having a child with a medical condition (for us AV Canal) and a known developmental / learning disability (in our case, Down Syndrome) is the need for parents to be their child's best advocate. In my short experience, I've already had to learn some things the hard way. I consider myself a quick study when the topic is near and dear to my heart and I wanted to share some of the strategies and support methods that have helped me over the last two months: