Over the last five weeks, my six-year-old son has attended a summer camp program in Massachusetts.
I had such promising hopes for this particular camp that my family made the drive from our home in Washington State across the whole dang country so my son could attend.
Now, at the end of those five weeks, as the morning air has made a noticeable shift toward the cooler side and the first autumn leaves are gaining the color of their age, as we turn our rig back in a Westward direction…. reflecting on our decisions of this summer —
I am so very glad we made this trip.
I am proud we found a way to give our son this opportunity.
Malachi is a “non-verbal” (or “non-speaking”) child with developmental disabilities.
However, the fact that he does not, or cannot, put his thoughts and feelings into spoken word does not mean he is without understanding.
Malachi has strong “receptive” language skills — meaning, he understands what is being said to him. He can follow conversations around him. He has words and thoughts and ideas in his head.
He simply cannot translate those words into verbalized speech. This is one way in which his disability manifests.
All of this is to say: Malachi is a prime candidate for use of an alternative mode of expressive language. Such tools empower those who cannot verbally speak to nevertheless convey their thoughts and intentions at varying levels of complexity.
“Low-tech” communication alternatives include printed pictures or icons that can be selected or pointed out to communicate specific words or messages. It can also include an alphabet board or a type of "core words" board, which you may see with increasing frequency at parks and playgrounds. As a young toddler, Malachi was initially introduced to expressive communication through a low-tech method.
“High-tech” communication alternatives include more robust systems of word choices made available on electronic devices ("speech generating devices"), such as tablets. These high-tech options vary in method of access, formatting, and complexity.
All of these options for communication fall under a larger umbrella term known as Augmentative and Alternative Communication, or AAC.
(Note: I am, by no means, an expert in any one method or mode of AAC communication. My understanding of AAC is extremely generalized, and my experience with AAC is limited to my role as my son’s Communication Partner. That said, AAC is an important area of practice, and everyone, in my opinion, regardless of lived experience or disability status, should possess basic knowledge of this form of communication so, when the time comes that we need to interact with an AAC-user, we are able to do so with grace and understanding.)
The summer camp that led us to pack up for the season and drive some 2,900 miles to Massachusetts was a specialized AAC Camp.
I was thrilled when I discovered the camp last year after a long internet search, looking for exactly that — an extended, language-immersion summer program focused specifically on high-tech AAC use. At that point, my son had reached a therapeutic plateau in embracing his device, and we needed a jumpstart in progress.
Here are THREE reasons we LOVED AAC Camp:
1. Each camper was provided 1:1 intervention and support.
The adult-to-child ratio at this camp was undoubtedly one of the primary reasons for its success. Campers were divided into three groups, roughly by age and “stage,” and each group was assigned a primary group leader with experience as a speech therapist or Special Education classroom teacher. A handful of college students and soon-to-be Speech-Language Pathologists (SLPs) were also divided among the three groups. There was a nurse on site, as well as several additional staff members providing support.
Additionally, each camper was assigned a one-on-one adult to serve as a support person/Conversation Partner. For some campers, this was a parent; for others, it was a contracted paraprofessional from their local school district. (I attended camp everyday alongside Malachi to work both as his conversation partner, as well as the medical support person he requires.) Not only did these 1:1 supports assist campers in practicing with their communication devices and participating fully in camp activities, but they were also crucial is addressing other needs — for example, fulfilling personal care tasks, administering medications, helping during snack and lunch times, and managing any challenging or unsafe behaviors.
2. The focus remained on traditional summer camp activities.
Yes, AAC Camp was absolutely a camp with a purpose. In some ways, the goal of the camp was more akin to summer school than a traditional summer camp. In fact, many of the campers had their camp fees paid by their public school districts, using “Extended School Year” Special Education funds. And because the goal of the camp was to immerse the campers in AAC use, there was a portion of each day that focused specifically on reading, language, and writing skills.
However, there was also ample free time to play with friends. There were nature hikes. We visited the horse barn. The local fire department brought out one of their big trucks for the kids. There was a pinata and tie-dying and twice-weekly swimming. Each day ended with a camp dance party, and all the families were welcomed to camp for a final awards-ceremony and potluck.
AAC Camp was both a learning opportunity and a fun summer experience.
3. Staff met campers where they were at and provided what they needed.
Campers arrived with assorted AAC programs, differing levels of experience and device acceptance, and a range of disabilities and support needs. Some campers were there for the primary purpose of gaining experience using their AAC device. Others had experience successfully using their device for communication but required more support for emotional regulation or challenging behaviors. Some campers had little difficulty participating in planned activities, while others needed frequent breaks for movement and self-regulation. And like all of us, campers’ needs changed from day to day.
The camp staff worked hard to provide each camper with the support they needed. They were flexible in their approach and quickly adapted activities to accommodate the needs of each camper. They worked with the campers individually, while also mentoring their 1:1 support person. A wide range of tools and strategies were trialed to determine what worked best for each individual camper. They were sources of knowledge and experience for parents and provided an additional body or two when more support was needed.
My son arrived at camp in July with only a minimal acceptance of his communication device. I had worked hard before camp to build out his platform’s word and phrase availability, hoping to maximize his opportunity for participation. Still, when he arrived, he would frequently push his device away — a reactionary behavior to a prior negative experience with speech therapy.
I also prepared myself for minimal participation, if not outright rejection of the whole experience. After all, Malachi is only six, and five weeks is a long camp. I thought, maybe, it might be too much, too soon.
He certainly proved me wrong in that respect. He loved camp! He was excited to get in the car on camp days and thoroughly enjoyed so many of the activities.
And he made progress though the weeks.
His progress was something even my husband noticed as someone who was not present at camp on a daily basis.
Malachi showed more direct engagement with non-family members. He initiated eye contact. He pushed his device away less and less as camp continued. He began allowing hand-over-hand support to interact with the device and select word choices. Eventually, he selected an appropriate word choice on his own. He learned to allow hand-under-hand guidance, a more minimal level of direct physical support, to select words.
I learned a lot, too. The camp provided me with the opportunity to see how other support professionals engaged with their campers. I mimicked them sometimes, testing out a different method of support, determining whether it was something that might work better for Malachi. The staff and group leaders were incredibly helpful, too. They answered my questions. They suggested new ideas and new supports for Malachi. And they facilitated connections between involved parents.
I am leaving camp with an enhanced skill set as a Communication Partner and my son’s homeschool teacher.
Malachi is leaving camp with more experience and more practice. He saw more modeling of communication, by more people, in different ways.
And, of course, we have a summer of family memories.
We have a busy year of work ahead of us — both of us.
But, AAC Camp was exactly the jumpstart we needed.
And Malachi is already on the list to return to camp next summer.
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