Rod Paige (the 7th United States Secretary of Education) once said “There is no more powerful advocate than a parent armed with information and options.”
Now, as a special needs parent, I fully understand the truth in this quote.
Yes, every parent must know that part of their job is advocating for their child. It’s common sense, right? We all want what is best for them.
But, prior to January 2020, when I was just your average Mom with normally developing kids, there really wasn’t a need for me to advocate for them. We of course would research the best schools, pediatricians and other options out there but that was every day stuff that parents do.
In the past month alone I have done more advocating for Livvy than ever before.
Getting anything you need or want for your special needs child is a MAJOR task. And don’t expect for companies or vendors you work with to follow up with you. None of them will. It has been our job to do all of the follow up to ensure she is getting everything she needs when she needs it.
I have had to text our pediatrician requests on 8 separate occasions.
I have had to call a new pump company we are transferring to for Livvy’s GTube supplies 10+ times.
We have had 3 meetings to trial eye gaze devices, with a follow up meeting to come, before we decide on one and then wait weeks to months to receive it.
I have had to speak with our neurologist about medications twice.
I have had to schedule PT, OT and feeding therapy appointments.
I have had to personally email prescriptions and referrals from doctors to vendors because their fax number isn’t working or they gave me the wrong one. Side note: can we please stop using fax machines?!?!
The list goes on. Keeping Livvy as stable as possible is a full-time job. Especially as her disease progresses and her needs (medically and for physical comfort and mobility) change.
To any parents who are new to the special needs run around, know that you are not alone. The frustrating back and forth and hoops to jump through is (unfortunately) normal. It is up to YOU to make sure your child is getting what they need.
Support systems through DDD and the like offer some wonderful assistance but it still requires work on the part of the parent to get the ball rolling when it comes to getting any kind of device or specialized care.
Be your child’s voice. Be their strong arm. Go with your gut. You do know best.