Time truly does fly by! I honestly have a hard time believing that I am a mother to someone who is getting ready to turn 19 years old!
Recently, I have been obsessed with going through old pictures...Baby pictures. Toddler pictures. And as I sift through the years of memories....Laughing...Crying....And feeling all these emotions of pride and overwhelming joy....I begin to wonder how ready is my "baby" to be a part of the REAL WORLD?
Can she advocate for herself....? Set up appointments? Follow through with doctors recommendations? Know what questions to ask? Will she be like me and bring a notebook, to write what was being talked about at appointments...? Have I led a good enough example, for her to start taking over...?
Transitioning from the Children's Hospital...Where we have gotten OUTSTANDING care can be a little scary. But hopefully OUR experience can put your mind at ease....And make the steps a little easier for you!
First, just because your child is 18....Does NOT mean they get the boot from the Children's Hospital or Pediatric Clinic that you have been using. Typically, these services will see a child until they turn 21....Sometimes longer.
But there are cases, where it may be time to move on before the 21st Birthday...And that's what we are experiencing now, with Bailey.
With things being "stable" in regards to tumors and back issues, we as family feel, now is the time to set Bailey up with 'Adult Care'...Since these will be the services used for the rest of her life.
Typically, transitioning is pretty easy....You just get your CURRENT Pediatric provider to refer you to a Adult Provider, or 'Family' Provider....And that's that. But....Sometimes, like with our situation, finding an Adult Provider who is familiar with the massive amount of complications, caused by a relatively unknown medical condition, has proven to be a little tricky.
So....This is where the 'dirty work' begins!
It's really not DIRTY work....It's more like accessing information...And asking LOTS of questions! Networking...Talking to people...And using resourcing like Facebook has been truly amazing for us!
Odds are...That there is a support group out there for whatever health concern your family is dealing with...and if you search hard enough....There is most likely a support group for the health concern...IN-YOU-AREA! It may take some time....And you may have to reach out, beyond your comfort zone...But the information is there! You just need to access it!
Meeting new doctors can be overwhelming...I have met a few doctors...Who seriously should NOT be doctors, based on their bedside manners..and lack of empathy...And even MORE doctors who I FELT like I WAS the ONE who should have the degree hanging on the wall!
It's kind of like trying on shoes...Or buying a new care. Sometimes....You need to "try-on" a few doctors to see if they will work for you. Test drive them...Seriously. There is nothing wrong with moving on to the next doctor, if you fee uncomfortable -- In fact, in the end, it's all about YOU anyway...and you DON'T want to be stuck with a doctor that you don't feel completely comfortable with.
Start with your insurance ... They have agents working that are trained to help...It's really as simple as picking up the phone and asking a few questions. This will at least give you a starting point.
Then reach out to support groups on-line...Or maybe even start your own.
I know that in our case, Bailey will still need me to be there with her....Advocating for her (plus she doesn't drive) But I am slowly allowing her to start making decisions on her own...She is "co-manager" and hopefully will someday be able to take over.
This transition won't happen overnight - So we are slowly, gradually beginning the process now, to help Bailey become more responsible for her healthcare needs.
Things that are important to start teaching your teenager NOW
- Have THEM ask the questions. Prepare ahead of time some of the things that may come up...Then have your child take the wheel.....Help them (of course) if they need it...But learning how to interact with doctors is one of the most important skill to have.
Knowing about the condition, is the only way for your child to start helping themselves with treatment.
A really good website to go to...To see if you and your child to ready to transition -> Is My Child Ready To Transition to Adult Care
I have nf like your family at age 24 it was only a few years age i transitioned to adult care and it was a challange. Have you.signed your daughter up for medicaid or ssi. I get these and if you have private inaurance lifelong.medicaid or medicare will help cost. Your nf chapter could give you more transition advice.
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