I read today another school is losing government funding for their special education programs because individuals in power are seeing the now and not the future. So I wanted to share my thoughts with you all on how looking to the future is a win-win for everyone!

Supporting the education of children with additional needs through government funds is crucial for several reasons, and it can lead to long-term cost savings and overall societal benefits.

Here are some key points to consider:

Early Intervention is Cost-Effective:

    • Addressing additional needs in the early stages of a child’s development can be more cost-effective than dealing with issues later in life. Early intervention programs, often funded by the government, can help identify and address learning or developmental challenges at an early age, preventing more severe problems in the future.

Maximizing Potential:

    • Investing in the education of children with additional needs maximizes their potential. With appropriate support and resources, these children can develop essential skills that will contribute to their independence and productivity in adulthood. This, in turn, reduces the likelihood of them requiring extensive support services later in life.

Reducing Dependency on Social Services:

    • By providing adequate support during their educational journey, individuals with additional needs are better equipped to lead independent lives. This reduces their reliance on social services and government assistance in adulthood. The initial investment in education can result in long-term savings by decreasing the need for ongoing support.

Enhancing Employability:

    • Quality education tailored to the needs of each child increases their chances of gaining meaningful employment as adults. This, in turn, contributes to the economy by adding skilled and productive individuals to the workforce. Employed individuals are less likely to depend on social welfare programs, leading to a positive economic impact.

Promoting Inclusion and Social Integration:

    • Supporting the education of children with additional needs fosters a more inclusive society. When individuals with diverse abilities are educated alongside their peers, it promotes understanding, empathy, and acceptance. This can lead to a society that values diversity and is less likely to marginalize or stigmatize people with additional needs.

Legal and Ethical Considerations:

    • Many countries have legal frameworks and ethical considerations that emphasize the right to education for all children, including those with additional needs. Failing to provide adequate funding for the education of these children may be considered a violation of these rights, leading to potential legal consequences.

Improved Mental and Physical Health Outcomes:

    • Properly funded education programs for children with additional needs can contribute to better mental and physical health outcomes. Addressing challenges early on can prevent the development of secondary issues, reducing the strain on healthcare systems and associated costs.

For these reasons government funding for the education of children with additional needs is an investment in the future well-being of individuals and society as a whole. It promotes independence, reduces long-term costs associated with support services, and contributes to the creation of a more inclusive and economically productive society.

He’s the child found dead-center in this photo, almost crouched down.

A girl in a sky blue wheel chair sits to his left. Another girl with a navy blue towel around her shoulders sits to his right.

He’s the shirtless one with orange hair.

He was nine the first time I met him. He was eleven the last summer I spent with him.

He was only a few years older when his body gave out and he died.

I haven’t seen him in over 35 years.

Yet the orange-haired pirate of a child — with his mid-arm crutches and his leg braces and his wicked smile and his stutter and his limited ability to speak in full sentences and his infectious laugh and his willingness to play fearless kickball at the speed of a fast moving but rudderless speed boat — continues to live every day in my heart and in my imagination.

This is a story about that orange-haired pirate of a child.

But it is also a story about another ‘near-child’ — one who was nervous and unprepared — that was invited to guide him one summer long ago.

And ultimately it is a story about the adult (who that ‘near-child’ became) that eventually allowed that orange-haired pirate of a boy guided him.

***

Chapter 1: A Pirate and The Uninitiated

It was 1984.

It was the summer before high school. I was barely a teenager. I felt incredibly awkward, shy, and lost. I knew so very little.

I sat alone in the way-back seat of well worn school bus. Tried to ignore everyone in the rows ahead of me. Tried to ignore what lay miles ahead of me. Tried to ignore that I was scared. Felt way over my head. Wanted desperately to get off that bus. Wanted to go home.

Much like so many kids heading off to camp for the first time.

But I wasn’t a camper. And this wasn’t my first summer camp.

The trees passed by my bus window in a blur. Yet, the trip took forever.

I just wanted off.

The only way off that bus that morning was to step fully into an experience that would fundamentally change my life. An experience for which I was woefully unprepared.

If you had stepped off the bus with me at the age of 14 in that long ago summer morning, you would have walked into a modest (at the time) summer camp nestled on the end of a lake in Dedham, in ‘central’ Maine, about a half an hour north of Bangor as if you were on the way to Ellsworth, which is on the way to Bar Harbor. which is where most people head when they go to Maine in this summer.

But an hour or so before you’d make it to Bar Harbor there lies a place of deep joy and refuge, healing and living. There lies a place called Camp Capella.

At the time Capella was sponsored by United Cerebral Palsy, but it welcomed all kids regardless of the uniqueness of their specific disability or their life circumstance. It was (and is) a camp where young people — whose bodies are broken or unique or challenged — are allowed to be children in the most beautiful and life-affirming of ways.

Capella did (and does) a lot of wonderful things, but it honored (and honors) childhood and life particularly well. In other words, it honored (and honors) the magical power of summer camp.

But I didn’t understand that at the time.

I was 14.

I was young, sheltered, naive, nervous. I had never spent an authentic moment with anyone with a visible disability in my life until the moment I got off that bus in the summer of 1984.

All I knew is that I was going to be a 14yo camp counselor working with handicapped children.

And I wasn’t sure I could actually get off that bus.

As a 14yo I was technically in no position to be a true camp counselor. Not even sure how it was legal, other than there must have been a stipulation for ‘counselor in training’ that someone selected for me as a way to invite me to work that summer.

You see, Capella was a place — at that time — that creatively took advantage of all resources and people and hearts and rolls of duct tape and whatever one could offer. It was truly a by-any-means-necessary culture when it came to the children they loved, protected and served.

That included an awkward 14yo boy who was going to be a first-time camp counselor with kids he had no idea how to love, protect and serve.

***

Chapter 2: Getting Off The Bus

Fast forward past my getting off the bus that first day.

Fast forward past a few days of intense counselor orientation — finding out I had to help kids eat, help kids get dressed, help kids use the restrooms, help kids speak (even if on a backboard and only able to blink a few expressions), help kids manage unexpected seizures, help kids stay alive.

And fast forward past the nervousness (and emerging sense of excitement) of trying to sleep the night before the kids showed up.

I’m standing at the front entrance of the main building. Another bus arrives. The door opens.

And out steps a pirate.

Okay, Uriah wasn’t a pirate, but I want you to imagine a young pirate kind of kid, a young pirate kind of kid with a shock of fire-orange hair and a smile that stretched to the horizon.

He bounded and near-collapsed out of the bus, one hyper violent step and landing at a time.

He was my kid for the summer.

And I was already in absolute awe of him.

***

Chapter 3: Looking Out To The Water

Uriah had one daily goal. Heck, maybe it was his one life goal.

It didn’t matter what sort of day it was or what was on the activity list. We could be struggling to get lunch into his mouth as his body faced excitable convulsions. It could be when his knees were bloodied from yet another collapse-fall as he sprinted on crutches down the concrete walk way. It could be in the middle of arts-n-crafts with fabric and glue and who knows what else mockingly stuck to his hands. It could be in the rain when clouds and plastic jackets were impossible to avoid. And it was absolutely anytime rest hour was forced on him.

The water of Phillips Lake always stood off in the distance, about 40 yards from the bathhouse where we kept our gear and changed clothing.

That lake was a siren call for Uriah.

All kids love being in the water at camp. That’s no secret.

But for a kid like Uriah, it wasn’t just love. It was life.

Literally that lake was the difference between Uriah feeling broken vs. feeling alive, between Uriah being dependent vs. being fully realized, between Uriah being a deficit vs. being a super hero.

You see, when Uriah was in the lake, the world got out of his way. Gravity got out of his way. Injury got out of his way. Seizures got out of his way. Limitations of any kind got out of his way.

On land, Uriah was a kid who collapsed, constantly covered in blood and never-healing scabs. Uriah was a young boy whose braces and crutches poorly prevented him from falling in every movement. Uriah was somebody with regular seizures. Uriah was a young boy who had at most 20 or 30 words that he could force out in a way one could easily understand.

But in the lake, Uriah was a porpoise.

Sleek and effortless. Full of splash and wonder. Contortions of grace. Inexhaustible. Fluent. Seizure-less. Boundless. Boundary-less.

At 14 — as an unprepared first-time counselor working with kids like Uriah for the first time in my life — I didn’t fully appreciate the profound wisdom that I was witnessing in Uriah’s natural response to the siren’s call of that lake.

And for much of the decades of teaching, coaching, working at more camps, designing schools, and learning to be a parent that followed that long-ago summer, I didn’t fully grasp the wisdom that that orange-haired pirate of a child was teaching me.

But I do now.

You see, that summer I thought that my job and responsibility was to pick Uriah back up and proverbially dust him off when he fell. I thought my job was to guide him and teach him and clean him and protect him and keep the world of risk away from him. I thought that my job was to get him into his bathing suit and down to the lake, let him swim for 30 minutes or so, then get him back to the bathhouse to dry off and change again so he could get back to the next thing on the activity list. I thought my job and responsibility was to send him to kickball and then to arts and crafts and then to lunch so he wouldn’t be late to what was next.

But where I failed is that I didn’t see what Uriah was seeing.

I didn’t look out to the lake that was calling him. I didn’t see the light and mischief in his eyes when he saw it. I didn’t see — in spite of blood and scabs and braces and collapse — that Uriah was in head over heels in love. And I didn’t see that all he wanted as a 9 and then 10 and then 11yo boy pirate in the three summers I was with him was to feel absolutely alive.

If I could go back to those long-ago summers knowing what I know now — thanks to holding Uriah’s story inside my heart and imagination for decades since he passed — I would have broken all the rules, been late to all the activities, rolled my eyes at the ‘end’ of swim time, and found by-any-means-necessary ways to let him be a porpoise in that lake without limit of time or space or gravity or words or pain.

Yes, arts and crafts mattered. Eating a proper healthy lunch mattered. Kickball mattered. Being ‘on time’ mattered. And learning to communicate clearly, even with a stutter and limited vocabulary, mattered.

But what mattered most was the wisdom of an orange haired pirate falling in love with the lake and the ease at which his body and imagination flowed thru the water, occasionally breaking the surface back into the sunlight in riotous laughter before diving back down into the welcoming mystery below.

What I’ve learned over time is that summer camps like Camp Capella do not exist for perfection. They do not exist for showing up on time. Or making sure falls never happen.

Camps like Capella are places where young bodies with a myriad of challenges are allowed to be children in the purest of ways and the boundlessness of limitless love.

By any means necessary.

And children like Uriah — with their wellspring of energy and wisdom and mischievous looks to the lake and the horizon — are our guides.

If we choose to see what they see, feel what they feel, love what they love, dive into what they dive into.

I am a better educator because of Uriah. I am a better parent because of Uriah.

Best of all: I am simply a better human being because of Uriah.

***

Chapter 4: Lesson Learned and Shared Many Years Later

A few years back, I was invited to be the opening keynote speaker at a large (and rapidly growing) school district in Ohio at the beginning of a new school year. It was a celebration and welcoming back of all faculty, staff, administration, and board members. The indoor complex was packed wall to wall. The energy was palpable. And this group of school professionals were ready to get at it, although still holding onto the last vestiges of their summer vacation, attired in shorts and flip flops and well earned tans.

The district was a model of excellence, resources and innovation. Their students have a well-deserved reputation for thriving in all forms of academics, athletics, and extra-curriculars. Their teachers are talented and proud of the impact they have on their students. The parents and local business leaders are rightfully proud of the accomplishments of the young people (and staff), touting it as central to the tremendous success of local business, real estate, and community culture.

When asked to speak about the ‘future of learning’ — central to the work I do daily — I was struck by the fact that the real opportunity for such a district wasn’t in further accelerating into educational trends and technologies. It wasn’t in increasing test scores. It wasn’t about more state championships. It wasn’t about better marching band routines. They had all of that in spades.

The real opportunity was to remind them of the beautiful complexities found within each of their kids. And in each one of them.

With no PowerPoint slides, no provocative education or economic stats, no compelling stories about the future of learning or societal trend lines, I instead told them the story of two boys: Uriah at 9 and me at 14.

I told them the story because it was a story of summer time.

I told them the story because it was a story of childhood laughter and overcoming camp challenges.

I told them the story because it was a story of new relationships and sunset conversations.

I told them the story because it was a story about all of us coming back together from our own summer adventures and conversations and challenges and laughter and relationships and sunsets, becoming a community of co-learners once again, something central to this moment for everyone gathered at this back-to-school kick-off event.

But I also told them about Uriah and me and that long ago summer of 1984 because it gave me a chance to admit publicly that I had gotten it wrong.

That I had failed.

That despite being a very experienced educator, coach, and school designer — and a parent of two — I had spent most of my career and early days of parenthood getting it wrong.

That while I was so often passionately focused on ensuring the growth and skill development and accolades and accomplishments of my students (and my own children) — and teaching them the ‘lessons they would one day need’ when the world got tough— I had failed to do what mattered most.

I had failed — in that long-ago summer of 1984 — to notice what Uriah noticed.

I had failed to focus on following his path of curiosity.

I had failed to be curious about what he imagined.

I had failed to honor what he craved.

I had failed to create space for what he daydreamed.

I had failed to ensure he found the lake so he could find himself.

So, standing on that massive stage looking out at more than a thousand educators and school professionals, I told them that my greatest failure as an educator (and as a parent) was not in failing to prepare my students (and kids) for challenges or their future,…

…but that I had failed to fall in love with their most precious present.

And that I had failed to see what they saw.

And that I had failed to love what they loved.

And that I had failed to let my Uriah guide me in becoming a better parent, educator, leader, learner, and human being for far too many years.

As I ended my talk, I paused to ask the audience of successful educators, staff and leaders to make space for the ‘lakes’ that their kids looked out at, so that their young people could become porpoises on their own terms no matter what real world challenges and scars lay all around them.

I asked them to make sure they found their own Uriah.

I asked them to see the world the way their own Uriah looked at it.

I asked them to follow their own Uriah’s invitation.

And I asked them to let their own Uriah help them become better parents, educators, guides, learners, and human beings in the process.

Written by Christian Long

Christian Long is a designer, educator, and the founding partner of The WONDER Project, a design studio that helps organizations, schools and learning communities design and develop at the intersection of their mission and moonshots. Christian works nationally and internationally with students, teachers and school leaders, architects, and a wide array of multi-disciplinary professionals to design agile schools and organizations readying for the future. He regularly presents keynote addresses at conferences around the world focusing on the relationship between human-centered design and the future of education. Overall he is an unapologetic advocate for wonder and curiosity as the root of all learning worth doing. A much older version of Christian – many years into the future – can be found in semi-retirement at a tree-covered summer camp where he’ll continue to marvel first-hand at the shared joy of children and adults alike.

To find other articles written by Christian visit Medium

To learn more about Christian visit his Linkedin & Instagram accounts.  

To learn about Camp Capella: “The mission of Camp CaPella is to enhance life experiences for individuals with disabilities by providing accessible recreational and educational opportunities.”

As I write this message to you, I find that it both hurts my heart but it also warms my heart.

When our children were younger, I thought was doing a really good job wearing different hats. I am a daughter, a sister, a wife, a mother, a teacher, a friend, and a volunteer. As the children were growing up, I felt that we were always having “mini teachable moments” and I was handling it quite well.

Looking back, I realize I should have taken a step back and let my children try to figure things out for themselves instead of jumping in to do everything for them. I should’ve “waited it out”!

For example, at the grocery store I would let my daughter make her own grocery list. If she couldn’t find the item, she would have to ask an employee to help her. (I would be standing right behind.) This was very hard for her to express what she needed but the employee saw that I was there and understood how hard she was trying. That being said, I knew that I could of done it faster and easier, but she needed to own the moment. I needed to wait it out and let her do it at her own speed! Let her have the ownership of her accomplishments.

A 5th grade teacher once told me in the nicest way, “Cut the apron strings!” And later in life, I was told I had a “stainless steel umbilical cord” with my children.

Yes, I was a helicopter mom! I am not too proud of that…but it’s really okay.

My children have all had different journeys and even as young adults they are finding their way. So, the next time you want to do something for your child(ren) take a moment and ask yourself, “Should I wait it out and let them figure it out themselves?”

They are children for such a short time and adults for a very long time. Give them a chance to learn how to do things for themselves. Don’t worry, you’ll be right there to help if they really need you!

It usually starts like this…
“I was given your name and your phone number by my doctor/family member/friend to ask for advice or recommendations for my child on the autism spectrum.” I listen to their journey and wait for their questions. Sometimes, a parent doesn’t even know where to start. My strategy is to try to explain my understanding of this unique spectrum disorder. I call it my Three Legged Stool.

The first leg of the stool is to try to understand what does being on the autism spectrum mean? (Please do not google and read any articles that are from 5 years ago or longer! So much fantastic information has been researched and implemented over the last 5 years that reading about “refrigerator moms” does not do anyone any good.) I tell them, “if you’ve met one child on the autism spectrum you’ve met one child”…because every child’s needs are very unique. Your pediatric neurologist should be able to guide you to your local resources and create a plan specific to your child’s needs. Also know that this is why Additional Needs Inc. was founded…for YOU!

The second leg of the stool, I explain how important it is to have the emotional support for all of your family members. Mom, dad, siblings, and grandparents all have different emotional needs when the diagnosis is made and the parents are starting the educational and intervention therapy plans. Be each other’s rock! You can’t be the strong one all of the time or the only one making these decisions. An informed doctor, or a counselor specialized is special education can help you make some of these decisions.

Finally, the third leg of the stool…the financial part of this. Yes, insurance does cover some behavioral, speech & language, occupational, and physical therapies but not all costs are covered. If you can, call your insurance carrier to see if you could work with one specific person as you go through your insurance coverage.

Maybe most importantly, I remind parents that it’s like learning a new language. It takes time and know that your unique journey will take you to wonderful places you never thought you’d go and you will meet some of the most fantastic people in your community and beyond!

Someone once said that it “takes a village” to raise a child. Nothing could be truer than this quote when you have a child with additional needs! I was lucky enough when our daughter was diagnosed on the autism spectrum in 1993 that I knew ONE other person who had a child on the autism spectrum. At that time, it was 1 out of every 10,000 births! I went out to lunch with this mom (Julie) and we each shared our history with lots of tears, lots of supportive words, and it was the start of a beautiful 25 year friendship. Of course, my husband, our other two very young children, and our families were there to listen and be supportive. But our families all lived so far away that no one really knew what our day-to-day struggles were. And who really wants to get on a long distance phone call and complain, explain how scared you were, or to cry. As we were trying to assemble our multidisciplinary team of speech and language pathologists, occupational therapists, behavioral therapists, and physical therapists, we met some incredible individuals who became a part of “our village”. I felt very comfortable sharing my thoughts and feelings, asking for support, and started to feel like we really had a team to help us and then to pay it forward by helping every other children and their families along the way. This is my definition of what a village is! Find “your village” and then help the next family you meet with a child with additional needs.

When Hannah was three years old she was getting lots of intervention; speech and language therapy, occupational therapy, physical therapy, behavioral therapy, and she was also in a public school ESE (Exceptional Student Education) preschool program. So many goals to be thinking about… it was overwhelming!

One day I was talking to my dear friend Nance about how concerned I was that Hannah was missing so many milestones. I had even stopped reading the baby/toddler/preschool development books. Nance shared a very wise idea that has stayed with me all these years. I have shared it hundreds and hundreds of times and I hope you will too.

 

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Every year as spring approached, I started to get a little bit nervous thinking about what activities and therapies Hannah would/should have during the summer months.

By May 1st, I usually had a lineup of therapists and ideas of what would help Hannah for the three long months of summer. Most importantly, I would ask Hannah what her goals were for the upcoming summer and work from her plan. I would ask her to list her top three things that she wanted to do. She usually wanted to do some kind of artwork, go to the movies, and go to the library. We were very fortunate that our local art center had classes and they were very accommodating for Hannah to be able to participate.

 

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Yes, we have all had that moment when our child says or does something that we were completely unprepared for! As a mom who has a child with additional needs, we are given a rare “gift” that we will have these moments…many, many, many, times. So be prepared!

Know that at any moment, any behavior, anything said or done, you will be ready with the wonderfully helpful question, “Would you mind if I made this a teachable moment?”

 

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