4 minute read
September 2022 Special Needs Living Akron/Canton
Parent Perspective
Don’t wait. Advocate.
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By Summerly Rowlands, Owner, Creator, and Writer of my22qt
Summerly Rowlands
I pride myself on being a mom. Ever since I can remember, I’ve always wanted to fulfill that role. I wasn’t scared to raise a child; I wasn’t nervous. I was ready. This is what I was born to do. That purpose I recognized in myself when others my age were trying to figure out what career path to take. My career path – motherhood. While I’ve been a mom now for seven years, I more recently earned an even bigger title – a special needs mom.
My daughter was born last July. At 22 days old, she was diagnosed with a rare genetic disorder called 22q11.2 deletion syndrome. Through this journey, her dad and I have educated ourselves and have chosen a path to educate others by raising awareness, helping families cope and find understanding, and paying it forward to the genetic divisions of children’s hospitals.
All children need their parent(s) to be their advocates at one point or another. When it comes to special needs, that advocating starts right away. While my daughter has only been on this earth for a little over a year now, we have had to advocate for her more times than I can count – all necessary and brought on by perplexing situations that still have my mind spinning. Whether it was the phlebotomist spilling her blood and wanting to poke her again, the hospital staff forgetting to fill critical tubes during her back-to-back spinal taps and wanting to perform a third, failing to allow a specialized team in to place her IVs, putting her in a one-size-fitsall bubble for feeding, the pure lack of coordination and communication amongst providers, or the disinterest in hearing what we as her parents think or what we would like to request … I could go on, but enough was enough. This life may be new to us, but we’re fast learners. You have to advocate for what you know is right for your child.
It can be hard when you’re facing professionals, that sense of feeling inferior or less than, but you have to find the strength within you to be the activist your child needs. And trust me, when it comes to your child, that strength emerges easier than you might think. So make them stop. Make them listen. Make them try it your way. It doesn’t matter what their job title is. YOUR job title is this child’s parent, and that trumps all. They can fight you on what you say. You can fight right back. Fight until you win. Right now, we’re only dealing with the medical world of advocating; soon enough, we will be adding in the academic world. No child should ever feel unheard or unseen, and when that child is too young or unable to have a voice, no parent should ever feel unheard or unseen.
I know we have an uphill battle from here, but we’re ready to meet them at the top – guns a-blazin’ and voices a-raisin’. Because that’s what our daughter deserves; the very best parents, the very best supporters, the very best healthcare, the very best education, and the very best life that we can provide for her, given the life that she was born into, isn’t that what we all want for our children regardless of disability or ability?
One of the best things we did was ask questions. Even when no one had answers for us or didn’t want to answer us – because eventually, they did; if you don’t stop, they can’t. And when I speak of “them” and “they,” that pronoun can refer to whomever or whatever you’ve had to stand up to.
Keep standing. If you need someone to stand with you, don’t forget there are people out there who can and will help. We’ve already met some, and it’s only year one. A professional advocate at the hospital, a team at the right school, an exemplary doctor or nurse, a passionate family member or friend … the right people will join you. I will join you. We’re in this together.
