The Event
Hemiplagia can have many causes. In children, it is presented most frequently in cases of Cerebral Palsy, Pre-partum Stroke, and Pediatric Stroke. No parent is prepared for any of these events.
Seeking Answers
Parents have questions, while the survivor is confused and feels broken. Everyone is scared, and the only voice to trust is the doctor in front of you. Although “Why?” is the only question a parent asks, a diagnosis is sometimes elusive and often has little impact on the recovery.
Finding Lil Heroes
Lil Heroes was founded to bring C.L.I.M.B. Therapy Camp (CT Camp) into reality. Your doctor or team of well-meaning therapists will direct you to seemingly extreme Botox injections, something called “C.I.M.T.” and terrify you with stories of a “Six Month Window” to motivate quality sessions early in your rehab.
CT Camp will leverage early rehab and improve recovery outcomes with innovative methods, advanced tech, and group support. A key purpose of Lil Heroes will be ongoing education and outreach to specialists, therapists, and others who can refer new warriors.
Travel to Camp
To gather enough warriors for effective group recovery, travel is required. The vision for CT Camp includes an endowment to help families afford the travel and the stay. The “L” in C.L.I.M.B. is ‘Location’, and it is an important factor in accelerating recovery.
What is C.I.M.T.?
Constraint Induced Movement Therapy (C.I.M.T.) is at the forefront of Hemiplagia treatment. The overall concept is easy to understand: By constraining the unaffected hand, the brain is convinced to provide intense energy and growth to the “Tricky” one. Outcomes vary but could be improved with a facility like CT Camp.
Arrival Day
Getting to camp is a fun day; we try to make it a really fun day. The warrior and their caregiver(s) will have at least one day (depending on travel, origin, and arrival) to acclimate before the start of the program. This time is best spent getting to know other campers, moving into your space, and generally getting comfortable with the location.
Reflection – Facing the Trauma (Warrior)
Whatever the type of onset, hemiplegia is a traumatic event for every warrior, and every recovery journey is unique. Children, especially, can be shut down by C.I.M.T. as though it were the original event, and this trauma can interfere with the warrior’s efforts at effective rehab. The sooner that the C.I.M.T. becomes the warrior’s choice, the more sincere the effort becomes, and the better the outcomes can be. Our program focuses on healing the warrior first, their bonds and relationships second, and then providing tools to address the hemiplegia.
Facing Trauma Together – The Magic of Camp
For many, this is the first opportunity to meet someone sharing their experience; CT Camp leverages this powerful truth to make rehab as productive as possible. The magic of our camp is that the trauma can be minimized for the warrior when it can be experienced side-by-side with peers.
Therapy – Occupational, Physical, SLP
Our therapy programs are built around playing games and having fun in ways that grow abilities. An early realization of most caregivers is that scheduled therapy sessions alone are not enough. The time spent with your therapists is truly educational for the caregiver; it is your training to be the full-time therapist your warrior needs. In this camp, a therapist’s ability to teach will be as important to their selection as therapy skills.
Reflection – Facing the Losses (parent/caregiver)
Easily forgotten by caregivers is the fact that they, too, experienced a traumatic event and that they have lost an imagined future they were excitedly planning. Just like the warriors, this journey is personally unique. The feeling of being resigned to a “new life as a special-needs parent” is common, but seeing examples of thriving families in a similar situation can help. CT Camp will help families discover that this “new normal” can be as full of joy, curiosity, love, loss, and vibrancy as any other.
You’re Not Alone
One of the biggest realities of this new normal is that few others know exactly what these caregivers are experiencing. The simple act of sharing wisdom can be healing for both the caregivers’ and the listeners’ trauma. More importantly for the caregiver, it helps them get into the right mental and emotional space to be a better therapist for their warrior.
Meaningful Group Work – The Location
More than just group talk therapy, the atmosphere and location allow for unique opportunities to grow and heal together. Sunrise hikes, hot cocoa, and campfires work similarly (but better) than traditional talk therapy, and the professional team-building environment creates a natural healing energy and space.
Centering Life’s Expectations
A common feeling that “life is over now” often overwhelms new caregivers and warriors, especially those privileged with a sound body. Being able to see into the future by meeting more recovered families can give the caregivers and warriors a better understanding of what to expect. The road ahead is hard, but having realistic expectations and a clear understanding of the challenges can keep the difficult parts manageable and the fun parts front and center.
Classic Camp Activities
We make a point to ensure a full camp experience. There is a well-recognized healing effect that takes place in proximity to nature. More importantly, we like to remind them that they are children, are allowed to have fun, and will have the opportunity to participate fully in most activities.
Catalyst To Recovery – The Endowment
Our program at CT Camp is a journey, and because of its length, it can feel like it. C.I.M.T becomes most effective after 12 days of constraint, and more time is just more valuable. This length of stay is usually prohibitive for families due to travel, special accommodations, and missed work. This is the reason for the endowment that we are raising. This endowment will provide for travel, lodging, and a chance to apply for a stipend to replace lost wages.
The Real Journey Begins At Home
At the end of CT Camp, the warrior and the caregiver begin a new normal, and it will feel anything but. It quickly sinks in that recovery moving forward will depend on what happens at home. The goal of Lil Heroes is for them to go home feeling less alone, more hopeful, and somewhat more prepared with tools and skills for the future. The memories of CT Camp therapy sessions will be valuable touchstones during intense future rehab, and we sincerely believe that the relationships formed at CT Camp will continue to grow and provide enduring support.