We are absolutely thrilled that The Apraxia Connection was able to make it possible to fullfill this families wish. Without your support by forming a team for the apraxia walk, attending our spring fundraiser, or simply making a donation this would not be possible. Your generosity makes it possible to provide grants to local children with apraxia so they can get the therapy and resources they need. Thank you! Thank you! Thank you!
The Apraxia Connection
Wish Comes True
by: Claudia Parker, The Reporter Online
Photos by Jeff Vorva
Thursday, December 25, 2014
We got our wish! We got our wish! We got our wish! We got our wish!
I can’t say it enough. I can’t sing it enough. Just thinking about it makes me want to dance. We got our wish and this is going to be a special Christmas in the Parker household. When I made a wish for what I wanted my daughter, who has special needs, to get for Christmas, it wasn’t exactly a common request. This wasn’t a wish for dolls, iPads or Beats. It was more of a collaborative wish. It went like this…
“Hi Santa, my name is Rhonda-Rene Parker. I’m four years old and I have Childhood Apraxia of Speech. Because I have CAS, I cannot talk so I cannot tell you what I want for Christmas, so my mom helped me write this note to you. “I’ve been a good girl this year. I’ve worked really hard in therapy. I’d love it if you could grant my wish to see Nancy Kaufman. She’s an award winning Speech Language Pathologist. If you grant my wish, I promise to keep working hard to learn new words. Toys would be nice, but what I really want for Christmas, is my voice!”
The Childhood Apraxia of Speech Association (CASANA) created the aforementioned template note, for Santa’s lap. CAS is a complicated language disorder, suppressing the voices of a growing number of children. It’s a motor-planning barrier between how the brain communicates the timing and movement of the lips, tongue, jaw, and soft palate needed for speech to occur. It presents itself as the child is learning to speak. Rhonda-Rene has been receiving speech therapy since she was 18 months old. A pediatric neurologist diagnosed her with CAS when she was three. By following up with a geneticist, we found the cause to be a mutation of her FOXP1 gene. We were advised to teach her alternative ways to communicate and told she may never be able to produce words. I grieved for the life I expected her to have and wept over the anticipated difficulties being non-verbal would bring her. Children with CAS differ from those experiencing a speech delay. Rhonda-Rene Parker received a great Christmas gift this year in the form of a grant to work with a renowned speech pathologist. One indicator of CAS is typically a huge disparity in a child’s receptive language.
The techniques for treating a speech delay and Apraxia are different. That’s why having a proper diagnosis is imperative so that children can receive the appropriate therapy. Kaufman is the owner and director of Kaufman Children’s Center in West Bloomfield, Michigan. Many regard her as a national expert in her field. She lectures locally, nationally and internationally on the subject of apraxia of speech in children. Kaufman said, “It’s my mission to empower parents, caregivers, families, and friends to help their infants, children, and adolescents to become effective verbal communicators.” Testimonials boast that Kaufman has been helping children with CAS learn to speak since she established the KCC back in 1979. She has a four-day Intensive program magnetically pulling families from around the world to participate.
My Second City writing instructor, Nick Johne’s daughter Emma, who has autism, was accepted into Kaufman’s 4-day program, he said, “Claudia, I’m telling you. Take Rhonda-Rene to see Nancy. It’s expensive but it’ll be the best money you’ve ever spent. She got Emma talking!” My husband, Don and I agreed, that even though the cost exceeds our family’s budget, we’ll make the sacrifice. Rhonda-Rene’s current SLP, Anne Scahill was completely supportive and helped us through the steps necessary to gain acceptance into the Kaufman program. We were anxious and wanted Rhonda-Rene to go right away. However, there’s a six- month wait list. She won’t be seen until the spring. On the bright side, that meant we’d have time to save our money. It turns out delayed gratification was working in our favor.
St. Xavier University offers a Master of Science degree in speech-language pathology. I’ve been taking Rhonda-Rene there for supplemental therapy for a year. We’ve developed a great relationship with our supervising SLP, Jennifer Brown-Fitzpatrick. She’s always offering us additional resources. One afternoon she said, “Claudia, have you seen this?” It was a flyer she’d pulled from the wall. “You need to look into this.” It read, “Do you have One Wish for your child with apraxia? See the grant application at www.TheApraxiaConnection.org.”
That was the THIRD time The Apraxia Connection had come across my path. Our Evergreen Park school district hosted a special needs event where they were sharing that same flyer. I’d also heard about them while at Rhonda-Rene’s classmate’s birthday party held at Little You. It’s a pediatric, speech, occupational and developmental clinic. I struck up a conversation with a personable and outgoing blonde, who I later learned to be Betsy Lowery, the owner, who’s also a SLP. When I told her Rhonda-Rene had CAS, she too went and grabbed a flyer. She said, “Here, contact The Apraxia Connection, they give grants to families of children with CAS.” The good Lord was practically knocking me over the head saying, “Do you want this blessing or not?”
Just days before their Nov. 30 deadline, I finally took action and applied for a One Wish Grant. On Dec. 9 I received a call from The Apraxia Connection’s Co-founder, Michele Kowalski informing me that Rhonda-Rene’s wish had been granted! The four-day intensive therapy program she’ll receive Kaufman next spring is being paid in full! I was so grateful, I went into a “baaahh” ugly cry.
Rhonda-Rene knows about 50 words in sign language, works with a picture communication system and can verbalize a total of seven words. She can say, Mom, Dad, eat, hi, bye, more and tea. Our prayer is that after applying the techniques we get from Kaufman, maybe by next Christmas, she’ll be talking so much we’ll be wishing she’d hush up!