Many children lose the language they have gained as autism takes hold—but that doesn’t mean they don’t want to communicate.
During my son’s toddler and preschool years I read everything I could get my hands on—but it wasn’t bestselling novels or fashion magazines that caught my eye. My afternoons were spent taking notes and making copies of pages to reference later. I squeezed in as much reading as I could while my children napped, spending my nights looking up terms and studies in the medical books I borrowed from the college library down the street. I wasn’t a student registered in any university courses—I was a parent of a child who had started to regress.
Having a typical child turn into a special needs child wasn’t something I’d prepared for or could have predicted. I had a good bit of knowledge about typical childhood development because of my career for nearly a decade as an educator. I knew when my son Ronan started to regress, something was different from what I’d seen in my own classroom although I couldn’t pinpoint exactly what. Sadly, neither could the professionals we were beginning to visit.
Searching For Answers
Thinking I might be able to use some of my old college textbooks wasn’t proving useful. I ended up scanning the bookshelves at a nearby college in my quest for answers, checking out everything from nursing care to psychological phenomena, but nothing fit my son’s issues. Having exhausted the local libraries, I turned to the internet. Soon I was settled at my desk in my own home, searching for answers one webpage at a time.
I continued a general search of childhood diseases, hoping something would pop out at me. I searched rare disorders, medical miracles and more, and became curious about speech and language development. It interested me because Ronan had gained some typical toddler vocabulary but had recently started to lose that speech. He was vocal and excited to say his words—but over time, I was crushed to hear garbled utterances. Ronan eventually fell silent. My quest for answers hastened.
Losing Speech
One thing that left me puzzled as Ronan was losing his skills was that through the silence he ached to communicate. The articles I read on severe expressive speech delays scared me. How could children be able to be a part of the world if they couldn’t talk? I’d never heard of children losing their speech in the way Ronan and other children I was reading about were.
The numbers of children being silenced by their regressions gave me new determination to find out more, and quickly. I knew that traumatic brain injury could cause speech issues, but that didn’t apply to my son. Previously typical children were being coupled with intense and disabling issues. Ronan struggled to produce words he’d clearly gained already. It didn’t make sense that he’d lost what I thought was such a simple skill. One of my internet searches brought me to a diagnosis known as apraxia of speech which I researched further. What I discovered was intriguing because I felt that Ronan displayed several of the traits of an apraxic child.
Ronan had just been enrolled in the early intervention program to address some of his delays with bare minimum allotted therapy time. Despite many attempts to increase instruction time, more speech was never granted. I knew that early identification and intense speech therapy with a highly trained speech and language pathologist (SLP) was proving successful for some children. They were able to gain skills allowing them to communicate through speech again. I wanted that for my son, too.
Wasted Time
Knowing Ronan would greatly benefit from the intense therapy suggested for apraxic children, I continued to request more school-based speech therapy. We didn’t have the means to go to a therapist privately and I foolishly thought the school system would provide the therapy he needed. I remember bringing up apraxia at Individualized Education Plan (IEP) meetings, requesting that Ronan be screened. The final response after all my attempts was, “When Ronan is six, maybe he’ll have enough speech skill to be properly evaluated, so let’s just wait until then.” Being the new special needs mom that I was, I recorded that information in my IEP binder and made a mental note to ask again for this testing when Ronan turned six.
So much time was wasted waiting for Ronan to “catch up” and for providers to clue in. During those next three years, Ronan received the cookie-cutter speech therapy typical in our area: 30 minutes twice a week with someone not experienced with apraxia. During this time, I discovered that while in kindergarten, not only was his school therapy grossly inadequate, but his entire schooling experience was causing regression and anxiety. With careful consideration, to secure his safety and preserve what little educational base he had, we transferred Ronan to private speech therapy and a private school. Once settled into his new routine and placements, he finally began to make steady progress. The decision to go private with better trained professionals proved positive.
Hopeful Signs
Our private SLP had been working for five years in the speech therapy field when she met Ronan. Erin Maher, who had completed her clinical work in a hospital rehabilitation setting for adults, realized the hospital was not for her. She wanted more than ever to work with children in a private setting. Settling down in the Raleigh area after graduation, Erin’s dream came true. She took a CFY-SLP position at Let’s Talk and has been there ever since.
Erin worked directly under the clinic’s “autism guru” while also gaining knowledge and skills working with the practice’s autism population. Her Clinical Fellowship—although very intense—would prove to be rewarding. Erin got to learn from the best and was immersed further into speech and language development, and how it related to those on the autism spectrum.
After meeting her a few times, I knew Erin was going to be the perfect fit for Ronan. The day we switched over to her services, Erin and our former SLP, and Ronan and I were sitting in the therapy room. Ronan had just started to make gains with some difficult motor planning exercises usually hampered by his low tone. He knew many words and occasionally one would tumble out. But, expressive output continued to be very rare.
On this partciular morning, Ronan had just finished some lip exercises with a lollipop. He was normally very distracted which, in this moment, helped us have a conversation without interruptions, but Ronan had something to say. He leaned forward into our circle and said, “Yum.” It was a deliberate, satisfied response to a tasty treat. Ronan said “Yum” twice more and had us sitting there in awe—and also filled with hope.
Time And Effort
Erin knew she had years of speech therapy ahead to give Ronan a chance to communicate better. Ronan of course had the most work to do. He had to learn how to shape his lips, have enough energy and memory to remember how to make sounds, and then put everything together to produce those sounds and be understood by others.
Ronan worked hard while Erin stayed as determined as ever. What proved to be the biggest component of Ronan’s journey was his sheer determination coupled with Erin’s dedication. After completing a series of exercises, sometimes Ronan would put his head down to rest. The second the next activity was laid out, he would pick his head up, scoot his little body up to the table, and try his hardest. Erin tapped into Ronan’s initiative and got right to work.
Tactile Therapy
Because of the thorough Let’s Talk evaluation, Ronan was granted the highest level of therapy time possible. Erin began to use a speech-language treatment technique called PROMPT (Prompts for Restructuring Oral Muscular Phonetic Targets). PROMPT involves the physical manipulation of a child’s jaw, face and mouth during communicative exchanges to show patients how speech sounds are produced. Ronan had consistently struggled with oral motor skills. He was able to imitate minimal oral motor movements but was not able to produce any sounds in imitation, so this became a focus of his therapy. Initially, Ronan’s attempts to imitate oral motor movement were done using a lollipop in front of a mirror so he could see himself. He was later able to transfer the movements he learned to pure imitation. Eventually the prompting techniques Erin used with these exercises were decreased as Ronan gained sounds.
Ronan was able to imitate more sounds than with other programs while using this tactile cueing system. Erin not only provided intense therapy and genuine care for Ronan, but also taught his school instructors and me. She guided us in providing tactile input for current targeted sounds Ronan was working on in order to draw out his speech gains and skills to other natural settings.
Speech Tools Crucial
Erin’s arsenal of speech tools included straws and bubbles to practice breath output and strengthen Ronan’s ability to control how sound was made. Ronan’s sessions were chock-a-block full, and he thrived thoroughly from it.
He learned how to blow bubbles, blow up a balloon, toot a horn to produce sound, and how to make specific sounds. Word approximations were confirmed by Ronan himself as he used his sign language simultaneously to express a thought. Erin pushed Ronan to the next level, using her technical knowledge and genuine desire to help children succeed.
Ronan trusted Erin and followed through with her demands. He also built confidence in his attempts to always try, try again. I appreciated every bit of encouragement Ronan got and the cheering Erin sent my way, too. Our whole family got involved with Ronan’s therapy: we were constantly amazed at his progress.
Tell-All Child…
Aiding Ronan with his communication has been a big task and has taken years to perfect. It’s something I never imagined having to do.
Thankfully I didn’t give up on searching for answers, and to this day Ronan has a great desire to tell us what he wants or needs. He can now call out to his Daddy with the sweetest sounding “Da da.” Ronan is silent no more! He has yet to regain all of the words he lost and still relies heavily on sign language, but his desire to speak remains very strong. Finding the right people with the right tools for such a monumental task is paying off, one sound and one word at a time.
