‘You are the CEO at your child’s IEP meeting,’ a post reads on the Instagram page Bronx mom Meghan O’Malley created to bring awareness to Apraxia- a severe neurological speech disorder that her son Damian was diagnosed with. The quote, which was shared at a parent advocacy meeting, has stuck with Meghan. Under the quote, she goes on to list things that she does to advocate for her child- in hopes to help and inspire other parents going through similar challenges. In fact, Meghan has made amazing strides recently in advocating for her son- receiving a proclamation making May Apraxia Awareness Month, coordinating the first ever Westchester Walk for Apraxia, and having her story shared in Parents Magazine.
What is Apraxia?
Apraxia is a severe neurological speech disorder that affects a child’s ability to clearly and correctly produce syllables and words. Although the child knows what they want to say, when they attempt to speak, they have difficulty coordinating their muscles and motor planning the necessary movement needed for speech. This makes it very difficult, and sometimes impossible, for a child with apraxia to speak.
Children with Apraxia require frequent and intensive individual speech therapy from an experienced SLP. After joining multiple apraxia groups in the NY & NYC area, Meghan realized that many children only receive 1-2 group sessions of speech therapy a week and they are unable to receive any additional therapy. This saddened Meghan, and it was then that she knew she wanted to help raise awareness so that all parents could better advocate for their children. Once Meghan realized that even some doctors were clueless as to what apraxia was, she knew that meant that there just wasn’t enough awareness about the disorder. If the information was scarce even among professionals, no wonder it was extremely difficult for a newly diagnosed family to find the necessary treatment and resources for their child.
So Meghan began her mission to change that…
Apraxia Awareness Day
First up Meghan teamed up with Apraxia Kids to help raise awareness and file a proclamation to request an official awareness day in New York. So on May 23rd, Meghan and her family along with another Bronx family headed to City Hall where Councilman Gjonaj declared the month of May as Childhood Apraxia Awareness Month. See the video here.
Walk for Apraxia 2018
Meghan then went on to help organize the first ever Westchester Walk for Apraxia in another step to raise awareness about the speech disorder. The walk takes place on September 30th at Tibbetts Brook Park- where ten teams are already registered to walk. There is still time for folks to register to walk or donate- visit their website for more information.
Meghan is still seeking local businesses to sponsor the event by making monetary donations, in-kind donations, or by offering items to raffle off. Those interested in participating can reach out to her directly.
Then later in the month, Meghan was featured in Parents Magazine where she spoke in depth about her experience navigating a childhood apraxia of speech diagnosis. In the interview she shares how she originally chalked Damian’s lack of speech off to the fact that ‘boys often develop slower than girls’ and how even his pediatrician did not see cause for alarm. She also shares that as a child she experienced speech delays and a wrong diagnosis- which she has now learned that she herself most likely had apraxia, “To this day, had I not gone through this with Damian, I would have always thought I was born with a brain injury—my own [medical record] says it too,” she says. “It’s been a therapeutic process to better understand what my family went through so many years ago and finally put it all behind us once and for all.”
To read more about Meghan’s journey and what she has learned about apraxia, see the full Parents article here. Please note that while Parents mentions PROMPT (Prompts for Restructuring Oral Muscular Phonetic Targets) as a therapy treatment option for apraxia, there are other therapy options available.
Meghan is a great example of what advocating for your child can do. Just like the quote she still remembers from that parent advocacy meeting, it’s so important for parents to be their children’s first advocate- before teaching them to advocate for themselves. Just a year ago, Damian wasn’t able to say his name. Now he knows all of the lyrics to almost every Dean Martin and Frank Sinatra song- you can see the videos yourself that Meghan has proudly shared on her Instagram page- @apraxiamama.
Meghan has also created a website where she has compiled resources about apraxia- with support group information, volunteer opportunities and more. Visit www.linktr.ee/apraxianewyork.
You can also learn more at Apraxia Kids – the only nonprofit dedicated to serving children with apraxia. Their website is www.apraxia-kids.