Early in my career I was given an opportunity to speak to a group of families of children with special needs about how the organization I worked for was totally inclusive because we let all children participate and why they should choose our camp programs for their children that summer. Shortly after I gave my spiel, I was approached by a mother who asked what I meant about us being inclusive. I again repeated how all children were welcome to participate in our programs. She asked how I would help her child participate given his cerebral palsy, his reliance on a wheelchair, and his verbal delay. I couldn’t fathom a meaningful answer. I had not known the weight of what I’d offered when I said we were inclusive.
The number of children with neurological disorders has steadily increased over the past several years. Year after year we see the diagnosis rates climbing, especially among children with autism spectrum disorders (ASD), attention deficit disorder/attention deficit hyperactivity disorder (ADD/ADHD), and sensory processing disorder (SPD). The issues associated with these disorders include: attention, communication, imitative/reciprocal interactions, disrupted routines, behavioral, and regulation of the senses.
- Autism Spectrum Disorders: Neurological/developmental disorders that affect how a person acts and interacts with others, communicates, and learns. It includes what used to be known as Asperger's syndrome and pervasive developmental disorders. One in every 56 births, nearly 1 percent of the world population has autism spectrum disorder.
- ADD/ADHD: A chronic condition including attention difficulty, hyperactivity, and impulsiveness. Nearly 6.1 million children are diagnosed with either ADD or ADHD. Fifty-two percent have reported conduct issues.
- Sensory Processing Disorder: A condition in which the brain has trouble receiving and responding to information that comes through the senses. Studies indicate that 5 percent to 16 percent of children exhibit symptoms of SPD.
But it’s not just these definitions and rising numbers we have to contend with, it is also the co-occurring disorders/disruptions that affect daily life and access to exercise and activity. These include: diet dysregulation, insomnia, extreme sensory aversions, mental health issues, issues with early/over fatigue, as well as a plethora of physical conditions.
At the heart of these issues is a dysregulation of the central nervous system (CNS). Devoid of emotion and critical thought processes, our CNS responds to the stimuli and perceptions that define our reality. Sight, smell, sound, the feeling of our bodies in space, the ground beneath us, all taken in through sensory systems and appropriately reconciled by our CNS. Our responses both neuromuscular (the nervous system sending messages to muscles to contract) and musculoskeletal (muscles contracting to work the mechanical nature of the skeletal system) are what allow us to efficiently function in our given environment. Mastery of these systems comes from a mastery in receiving and processing sensory information, a process known as integration. And this isn’t just for children with special needs,— all children benefit from increased ability to integrate stimuli, kids with special needs just have an additional need for this kind of activity.
These are concepts we need to remember when instructing first-time staff (whose knowledge of child development may be purely anecdotal), when considering the risks and liabilities as well as the intrinsic rewards of camp that last a lifetime, and especially in our efforts to design top-notch, truly inclusive programs.
In addition to neurological dysfunctions faced, at times there are physiological dysfunctions to consider as well:
- Hypotonia: Commonly referred to as “low muscle tone,” hypotonia affects posture and one’s capacity for fatigue/exhaustion, and thereby limits persistence to pursue gross motor activities. We see this in campers who are constantly dragging their feet, unable to lift them high enough to avoid kicking up dust, sagging at the trunk on long hikes, or always leaning. We can help improve this condition by exercises that focus isometric muscle lengthening of core muscles such as hanging, ropes, or monkey bars.
- Scoliosis: A curvature of the spine that can result in a wide spectrum of symptoms or seemingly no symptoms. Severity ranges from no symptoms, to mild discomfort, to the need for major surgery for those afflicted. Stretching activities that align the upper and lower half of the body are amazing for this.
- W-Sitting: Though seemingly innocuous, W-sitting represents a serious limitation to proper development. So called because children sitting in this position seem to make a W with their legs, this seating position actually limits a child’s ability to flex at the trunk and work bilaterally. Put simply, this means children are only playing with what is directly in front of them, closest to their hands. This is fixed very simply by sitting a child on a cushion or in a chair at a proper 90-degree angle.
Quick question. How many senses do we have? Five, right? Touch, taste, smell, sight, and sound. Right? Wrong. In fact we have eight senses. In addition to those we also have our vestibular system (related to balance/equilibrium) and our proprioceptive system (related to muscle tension/contractions) in addition to our interoceptive system.
Now in addressing these neurological, physiological, and sensory-processing dysfunctions, we find that movement-based activities and games are the most effective means of engagement — especially those that refine the vestibular and proprioceptive system.
Does this sound complicated? It’s really not.
All movement taxes the vestibular and proprioceptive systems and our ability to integrate our sensory input. As we walk, we feel the resistance of our musculoskeletal system exerting pressure on the ground and varying muscle contraction to keep us upright and moving (proprioceptive input) and our body moving through space (vestibular input).
We challenge proprioception when: walking at an incline, crawling, utilizing the whole body in movement, catching, and pushing or pulling heavy objects. In a camp setting we have natural opportunities for this in hiking at different levels of steepness, keeping one’s trunk parallel with the floor, swimming, games like tug-of-war, and by carrying heavy objects/rucksacks.
Vestibular functioning is challenged by activities that disrupt balance and equilibrium. This includes activities like jumping, swinging, sliding, or any activity in which the head is below the center of gravity, or our cores. Camp opportunities to indulge this are trampolines, zip lines, slides, or games in a wheel-barrow or bear-crawl position.
Now I said this is how these functions are challenged. But I’m sure we all know, it is through continued challenge that we grow. Our challenge as professionals in offering inclusive programs is much more than accepting every registrant regardless of their inabilities.
When my son started preschool, with a recent autism diagnosis and a verbal delay, I was petrified for him to leave home, though I knew it was for the best. Even though I worked at the school he’d be attending and had heard of their legacy of inclusion, I spent my nights worrying he’d be the exception to this. All I wanted was a safe place that would accept him. What I got was a community that went far beyond just my son’s classroom who have taken concerted efforts to understand him, his individualized strengths and challenges to daily living, as well as his ways of communicating and expressing his needs and emotions. They’ve worked closely with therapists in the classroom, helped shape educational plans and goals with the school district, and they continue to coordinate with a multidisciplinary team now over Zoom to find ways to include him in his equitable share of: life changing experiences, a community to belong to, and opportunities to be just another child. When they spoke of being inclusive, they truly knew the depth of what they offered.
I’ll restate: our challenge as professionals in offering inclusive programs is not in accepting every registrant. It is the continued and concerted effort to understand how to equitably include every child, regardless of barriers, dysfunctions, or diagnoses in the experiences of a lifetime and communities we work so tirelessly to create.
This is the depth of the word inclusion.
Jason Foreman’s career has spanned nearly 15 years working in a variety of youth development and early childhood education programs serving youth infancy through 8th grade. In addition, Jason is a certified personal trainer, a consultant for camp and youth development programs, an advocate for inclusion, and, most importantly, a parent.