For the last eight years, we’ve worked to help our J-Man learn to say the ‘b’ and ‘p’ sounds. For most of those years, it’s sounded like this mixture of a glottal stop and a fake swallow combined, his lips and teeth open. In other words, about as opposite from an actual ‘b’ or ‘p’ sound as you can get.

A procession of speech therapists have tried a seemingly endless encyclopedia of techniques to help him with this. As he gained more and more verbal sounds, the sounds he used as his own approximations for ‘b’ and ‘p’ remained steadfast. He still has approximately the verbal speech of a two or three-year-old (he just turned nine), but the clarity of the speech he does have has improved in leaps and bounds in recent months.

It would be one thing if it were just us talking to him. We know what he means, and in that regard his glottal approximations haven’t made that much functional difference. We know, however, as he gets older and learns to express himself more and more, and the more clarity we help him achieve, the more he will be able to make his voice heard by others. Obviously when he gets older and grows toward adulthood, the more vital it is for him to be at least somewhat understood in situations anywhere from ordering lunch to advocating for himself to others.

So we kept trying. We tried every form of modeling the sound for him, but to no avail. We focused on getting him to close his lips – an essential component of bilabial sounds like ‘b’ and ‘p’ – but he would just touch his lips and then go right back to forming the sounds the way he always had.

Many years and approaches later, we noticed that the throaty, glottal noise was moving slowly forward in his mouth. We wondered if maybe he was ready and preparing himself to make a change. His speech therapist had the brilliant idea to substitute ‘b’ or ‘p’ for ‘m’ to get him to close his lips as a transitional step toward ‘b’ and ‘p’ later. So, ‘blue’ became ‘mlue’ or ‘muhlue’, ‘mink’ for ‘pink’, and so on. This finally seemed to click for him in a way nothing else had before. It got that frontal, similar, bilabial sound going and moved the sound forward in his mouth. We were getting there. We could feel it.

Then on occasion he would successfully make a ‘b’ or ‘p’ sound! It seemed rather random, but in reality it was primarily when he wasn’t thinking about it. Instead of overthinking it or remaining so invested in patterns that had built up over the years, it just popped out there.

BeautyWe thought about what a Herculean step this was for him after almost eight years, how much he stuck with it and did the work and the practice. I can’t imagine something being so hard, but yet him working at it for so long. It made us even that much prouder of him.

I recently had to go back to the Head Pain clinic in Michigan, this time by myself. Mary frantically was texting me that he was repeatedly making those elusive ‘b’ and ‘p’ sounds in songs and scripts at home. I asked her to make a video clip and send it to me. She did, and I sat on my hospital bed and wept, tears of joy and pride.

Tears that he had climbed to the top of this incredible mountain, and tears that I had been 700 miles away when he did. I had missed that moment. I am the primary stay-at-home parent. I have been here for just about every first of everything. A big part of me hurt. I know how hard he worked, and the time, talent, and energy a small army of people had put into helping his speech progress over the years.

I felt sorry for myself for a little while. I sobbed as I watched the video over and over again. Then I became grateful that moments like this are part of my life. I get to bear witness to my two brave, determined sons who conquer challenges great and small every day. They do not quit, ever. I am grateful that they make me a better father and a better man. Lord knows I need both of those things right now.

I am grateful for the people who work on their behalf to make these moments possible. These moments don’t appear out of thin air. They are the culmination of hundreds and thousands of hours of work by numerous saints who give their lives so that our children can have that chance to become the fullest possible expressions of themselves.

We start on the next journey now. There will always be a next journey. But now he can say words like beauty, bright, brilliant, believe, beloved, best, blessing, brilliance, bravery, possibility, potential, powerful, promise, peace, perseverance, progress, and proud.

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The Screams

by Tim on August 26, 2014

In the J-Man’s classroom when a child is upset or overwhelmed, they may begin to scream. Perhaps they scream in frustration, anger, terror, or confusion. Perhaps they have no words except to scream. It may come out as a shriek, a brief and shrill alarm, a cacophonous string of high notes, or a bloodcurdling and unending scream.

When you’re in the classroom enough, you learn to know whose screams belong to whom. You learn from pitch, cadence, and duration what they likely mean. You learn when to be alarmed and when to be a calm but firm presence.

You learn how to pick your own child’s screams out of a sea of hundreds of voices and background noises. In a store, it’s like active sonar pinging you back toward them.

Some screaming you get less used to, assuming you do at all. The screams of terror at the dentist as your child flails and claws desperately to get away. The screams in the ER through which your barely verbal child asks, “When?” as you say, “It’ll be over soon.” The screams when it takes seven of you to hold him down to get an IV in.

No, I don’t think you ever get used to any of those screams. You often just retreat to some sheltered and shielded place inside some dark recess of yourself and hide, or maybe leave your body entirely, until at some point it stops.

RevivalThere are the screams of your minimally-verbal or non-verbal child who cannot tell you what hurts or how. There are plenty of verbal kids, too, for whom pain and body sensing are too abstract. They just know they hurt, and they want it to stop. And you feel powerless as you are left to guess what the body of your beloved child feels and needs desperately in that moment.

There are the screams of your neurotypical children who know exactly what is going on. They know their pain precisely and exquisitely. They scream in absolute terror, and you cannot stop the blood draw, the dental work, or the IV because they have to be done. They have all the words they need to express the bloodcurdling fear.

“STOP IT STOP IT STOP IT NOW NOW NOW NOW GET AWAY STOP IT NOW!” You try to soothe and reason with them, but that’s impossible. You even try to bribe, but they’re way past that. Even with all the additional tools you have in your arsenal with neurotypical children, terror is terror, beyond reach of anything except the pain finally stopping.

We have been in the pediatric cancer hospital and clinic. We have heard the screams of children enduring untold pain, the chemical war being waged in their own bodies. Their skin on fire, their weak bodies vomiting up bile and cancer, their legs failing them as they try simply to stand.

They stare blankly at the floor and the walls and their parents. Some are too exhausted to scream. Their screams are in their eyes, radiating from their souls. Some unknowable dark energy on that hospital floor turns your blood cold.

Eli screams when they draw his blood for the thirtieth time. He is just so tired of it all. He vomits what little is on his stomach and turns green. He is too sad to scream. He just quietly whispers, “When will I be done with the chemo?”

He goes to therapy now because he is showing signs of traumatic stress. He holds in so much screaming because he doesn’t know how to let out all that confusion, anger, exhaustion, terror, and hurt. His body has betrayed him. He is five years old. He has no language for this.

I see his face when he hears the other screams. Sometimes he just pauses and continues playing as if it’s not happening. But I know better. He’s the most observant child in the world. He has to hear it, but something inside him closes down, covers over that gaping wound to protect his precious soul. It is how he copes, and I respect it. Sometimes you can see he wants to go comfort whomever is screaming, but he is uncertain. He doesn’t know what he should do.

Maybe he innately knows Mr. Rogers’s advice that in times of great suffering, look for the helpers, and in the oncology clinic, there are so many helpers. He has such a good and loving heart. I want so desperately for him to come through this with that intact.

Another child a few infusion chairs away behind a curtain, screaming and trying to rip out the access needle from his chest. I see him later. He is going bald. You can tell he was once a strong, vibrant kid. He is angry that life has betrayed him. I want to cry.

I wonder if the doctors and nurses go home and scream sometimes, whether they drink their terror and break the bottle against the wall. They know some of these children will die. I don’t know how you make your peace with that. I think they are superheroes for every life they do save. But we are human, and we most often remember the faces we’ve lost.

In nearly every facet of my life, screaming is never far away. Blessed are those who choose to enter these hurt and uncertain places I’ve seen and seek to help others find rays of peace.

May those of us for whom this is part of our lives never become immune to it. May we instead find a way to accept our place in it, to soften our hearts to embrace those who need us rather than allow our hearts to harden against it all.

How do we do this? I have no idea. Many of us are here in this state of being because this is how the story of our lives has played out so far.

Maybe just ask whomever or whatever power or force greater than yourself that you believe in to help you. I don’t know how it works, but I think it somehow does.

Help me to soften my heart toward someone in pain rather than harden my heart and retreat inside myself. Help me to walk into dark and difficult places and show compassion to all who are heavy-burdened. Help me to be silent and hold a space of peace, mercy, and grace when there are no words. Help me to reflect the sound waves of the screams with waves of love and comfort. And when the screams are my own, help me to know that there are people holding me and my heart in theirs until I find my voice again.

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“Is love available even here?”

by Tim on June 24, 2014

A wise friend of mine has this tattooed on her wrist. It reminds her of one of the most fundamental questions we must ask ourselves when life goes to pieces and hope seems so far away. 

This question has come to me often in our many hours in the pediatric oncology clinic. Of all the children we see, I know the inescapable truth is that some of them will not survive. There will come a day in the not-so-distant future when their bright smiles, indomitable spirits, and their endless courage will shine only in memories. 

Cancer is a cruel and evil monster. You cannot bargain with it. Its sole intention is to take over and kill. We live in the presence of an unfeeling, relentless enemy. We fight it down to the ground with our bare hands. Some of us will lose. It threatens every day to tear our lives to dust. 

But in the face of it, we can ask ourselves this question. Even in the midst of terror and the very end of hope, we can ask it. 

Is love available even here?

I see parents altered down to their DNA by fear. They have emptied themselves of everything they have to save their children, and have become shells of what I imagine they once were. Yet they carry on, hunched over by the weight they bear, determined, going on pure instinct and love. Covered in cracks, they threaten to shatter at any moment. But somehow, they never stop; they never quit.

I saw a dad bent low, exhausted, and leaning from shouldering the weight of the world, pulling his frail daughter in a red wagon with one hand and her IV pole in the other. He took step after step, lap after lap on the pediatric oncology floor. She was too weak to stand and could barely move in the wagon, propped up with blankets and pillows. I wondered whether she was a prophecy of our son’s future, and her dad of mine. But somehow, flowing from his hand, to the handle, to the wagon, and into her body was a wordless spirit and bond that would bear itself to the edge of doom. 

Is love available even here?

One family had been in that hospital for six months. They lived in a time outside of time, a place outside of place. Their entire universe had shrunk to a couple thousand square feet of hospital floor. Days were measured not with hours, but in good or bad, progress or setback. But somehow, they reached out to us, perhaps seeing in us the same terror they have seen in their own mirrors. They offered us encouragement, told us we would be strong enough, and then they returned to their child’s room having worn that path bare. 

A little girl of barely two, thinning hair and a nasal gastric tube came toddling into the play area and settled in next to Dale Jr. They played in a sort of slow motion. Their IV poles bumped into each other. They smiled at each other and seemed almost like kids again, like nothing bad had ever happened. Her mom laughed, and we laughed. Seeing our kids happy now takes on infinite layers of meaning. In those moments, the future stops, balanced between joy and terror. But somehow, our children hold hope for us within the present moment when we can barely breathe.

Is love available even here?

One child wrapped himself around his IV pole and stood on the base while his mom pulled him along. He was too physically weak to walk himself. He was pleased to be upright and moving briskly around the clinic again after his body had succumbed so much to the chemo. And his mom was happy that he was happy again. Everything around us remains unknowable. But somehow, in that moment they found joy wrapped around the same instruments that ravage his body. 

Two little girls, both bald from the chemo and swollen from the steroids, sat at the playroom table, each with IV poles standing like prison guards next to them. Bags of fluids dripped slowly into their arms, chemical warfare tearing their bodies down to scorched earth. Each day, they balance on the edge of a knife between death and the chance to rebuild their lives from the depths of their merciless cancer. But somehow, neither paid the IV poles or chemical weapons any mind. These things had become so much a part of their lives that they sometimes melt into background noise. 

They sat at the table together playing Candy Land. They are about my son’s age. They laughed with each other again and again as the game went on. They were once strangers, but somehow these unimaginable circumstances led them there to that game at that table on that day where they could laugh and be kids again. 

Is love available even here?

I saw the parents’ ashen faces. The staff paused and parted and give them space. I knew what this must mean. They faced the unspeakable question. There are no words anyone can offer. There can be only silence. But somehow, in the pausing and parting, the standing by and with, they were surrounded by those who will watch and wait, stand vigil through this total darkness until the day comes when it is time to speak again.

Is love available even here?

My own beloved son says, “The medicines give me bad dreams. I am scared of ghosts, monsters, and bad guys. It started when I started taking the medicines.”

He pleads with me, over and over, “Daddy, when can I stop taking the medicines? Daddy, please can I stop taking the medicines?”

I feel broken. No, it’s so, so much worse than that. I can’t find the words. All I can say to him over and over is, “I’m sorry. I’m so sorry.”

He covers himself in band-aids because he feels torn apart. He hides the king and queen deep inside the castle and surrounds them with knights and superheroes of every kind until there’s an impenetrable ring encircling the castle. This is how he speaks of his terror. 

He’s 5. This shouldn’t be happening to him. This shouldn’t be happening to any of them.

We learn to give him chemo at home ourselves to save trips to the clinic. I take extraordinary precautions to not spill a drop of it or get any on myself, yet I am injecting the entire contents of it directly into his chest. I have to suspend my emotions, tell myself this is the only way to save his life. He lays there, his vibrant energy flowing out as the chemo flows in to replace it. It flows into the cracks in his body and soul and pushes them apart even farther.

I spend the whole week of his treatments between the verge of tears and crying, floor-pounding rage. I hide my emotions from him. He is already bearing too much. His play therapist believes he is suffering from traumatic stress. He worries constantly about the house catching on fire or bad people breaking into the house, neither of which has ever happened. He locks the doors of rooms he’s in, even if we are with him.

He knows enormous words like antibiotics, histiocytosis, and heparin when he should be telling jokes about bodily functions with the other boys. 

Is love available even here?

Love is the only thing that can remain unbroken even against the full fury of these horrors.  We have been surrounded by people who feed us when our bodies are crushed and weary. We have been enveloped in the thoughts and prayers of family, friends, and complete strangers when our faith and hope in the future have faltered. Their acts of kindness have flowed through the empty places in our lives and renewed our faith in love and compassion.  

These stories and countless like them will go on. There are no tidy, happy endings. When we love someone fiercely and completely, we risk losing everything. We risk devastation, and we have so little control over any of it. 

But somehow, we choose to love regardless. It is what makes us human. It is what  gives our lives meaning and beauty.

It is why love with always be available, even here, even anywhere, whatever may come. 

{ 7 comments }

When It Falls Apart

by Tim on May 2, 2014

It has been a long time since I’ve written anything. Life for us has turned into a never-ending series of challenges, challenges unlike any we’ve ever faced.

As some of you know, I was hospitalized in Michigan right before Christmas for almost two weeks in an intensive program to try to cure my 24/7 migraines. This worked… for a while. Even with this period of decreased head pain, the aftermath of the previous year – most of which was the product of my own horrible decisions – replaced it. Then within a few weeks, the headaches returned, and everything merged into something that left us surviving from day to day.

Then it got worse. Much worse.

In late February, Dale Jr. was complaining that his right arm hurt. We thought he had perhaps fallen on the playground at school or while playing with our friends’ kids. But it didn’t improve, and he certainly wasn’t faking it for attention. He couldn’t put weight on his arm and was constantly guarding it against his body.

So we took him to the pediatrician, who seemed convinced that we were overreacting. Dale Jr. passed a full range of motion test. But the pediatrician said just to be on the safe side that he’d order an X-ray to see if perhaps he had fractured his clavicle or had some other kind of injury that might not readily show up during an exam.

What ultimately showed up was something we never could have expected, something that would instead completely change our lives.

The X-ray detected a small mass on his right first rib, enough outside the focus of the X-ray to be unable to get a good look at it. So they immediately called him back in for a CT scan of that area. Within no time, they called us – at off hours on a Saturday – with the results. They weren’t good, but they couldn’t be more specific than that. We were told to immediately report to the North Carolina Children’s Hospital for direct admission to the Pediatric Oncology floor.

We heard the word ‘oncology’ with horror and disbelief. All we could do was throw together some luggage and leave within an hour, having no idea what was going to happen next.

The next days were like being cast into a cauldron of denial, desperate hope, and abject fear. We felt like we were in a bad dream we would wake up from any minute. We fell into that trance of just getting from hour to hour.

We took walks around the Pediatric Oncology floor. He played in the play areas, rode tricycles up and down the hall, and chatted up the nurses, doctors, and the other kids, like nothing was really going on. In time, he began to ask questions about why he couldn’t eat, why they were doing so many tests, why he had to have all these things stuck into his arm. He worried about the other children there too weak to stand and walk on their own. He asked why they had little or no hair. We never figured out whether he feared that would be him someday. I know we did.

We tried to shelter him from all this fear and the complete unknown we all faced. But who can really stand against something like this.

After several days in the hospital, the tests came back that he had multiple areas in his chest and abdomen that were growing abnormally. If it came back positive for some form of cancer, it would be classified as metastatic, and his odds of survival would involve numbers we would not be able to speak aloud. There were other things it could be, each with increasingly better odds for getting to a place beyond this nightmare. We knew it would be something; at that point we just begged for him to be able to live.

We had to wait the better part of another week for the pathology results. We paced the floor. We barely slept at first and then just started collapsing after that. We begged for him to be shown mercy. We begged to be allowed to take this from him and bear it for him.

We walked into the exam room together to hear whatever the doctor had to tell us. As I crossed the threshold of that door, I remembered all too clearly the walk, almost six years ago to the day, into a doctor’s office to hear the diagnosis of autism for our J-Man. That day felt like the end of the world, though in hindsight I now know it wasn’t. The more we learned from that day on, the more experience we got, the more we realized that so much wonder and beauty would permeate our lives. I clung to that for dear life.

This time the stakes were infinitely higher. Autism will never be cancer. But over these years, our J-Man had already taught us how to bring forth the very best of who we are. I never could have imagined how much we would need what he has given us. I had to believe that we would again rise to whatever was coming next.

The results came back that Dale Jr. has Langerhans Cell Histiocytosis (LCH). It is extremely rare (1 in 200,000) and is currently a lifelong condition, but the treatments are relatively manageable and the outcomes are good. The doctors said they actually cheered. It could have been so, so much worse, and they had feared it was. We all exhaled.

dale-jr-capeIt is an unusual disorder in that it has properties both of cancer and an autoimmune disorder. In the upside-down world of oncology, this really was the best possible outcome for him. Other cancers could have meant survival rates as low as 25% or worse. With LCH, when caught this early, if he responds positively to the treatment protocols, his future prospects are excellent.

But in the meantime, he must get weekly chemotherapy treatment for at least 12 weeks. If the resulting scans show that his lesions have adequately shrunk or disappeared, then he can go to monthly treatments for another nine months or so, for a total of a year of treatment. After that, he’ll get regular scans, and we just pray it never comes back.

Because of all this, we had to withdraw him from preschool. He was devastated. They have rallied around him even in his absence, lavishing love, gifts, and their sincerest thoughts and prayers upon him. We went back to his school for a brief visit one day, and they treated him like a rockstar coming home. The church the preschool is part of has cared for us like their own family.

We recently learned that after his first six treatments, his lesions are indeed shrinking. He crossed the first major hurdle on his path back. He should get to start kindergarten on time in August. Hope is being reborn.

We are so proud of him. He has faced all this with amazing bravery. He has a port in his chest, scars from two surgeries, and has all sorts of things done to him weekly. Yet, he takes it all in stride. He asks lots of thoughtful questions. He comes to us and talks about being afraid, with no shame or self-judgment. We are basically nervous wrecks. He is a superhero.

We worry that he is having to grow up far too fast. He should be back in preschool playing on the playground and telling jokes with his classmates. But he has accepted this with grace, and I imagine someday it will serve him well.

We look at our two boys and realize something extraordinary about them both. They teach us time and time again how to be brave in the face of challenge and adversity. They show us about kindness in the midst of fear and uncertainty. They take steps forward into the unknown every day. Do the next right thing; that’s all. Worry about the rest later.
j-slide

They bring out the best in others. People love them. They each call forth something deep and beautiful from within everyone they meet. We face many hurdles ahead, but we can most certainly be grateful for this. They are already building the community they need, and we need, to thrive in the months and years to come.

In his minimal, halting speech, our J-Man recently put together the words ‘family’ and ‘together’. Dale Jr. tells us how much he loves us at least a dozen times a day. Out of the shattered fragments our lives had become, they are living out what is most important. And I am their pupil once again.

And this is how we will rebuild.

{ 7 comments }

An Open Letter to Autism Speaks

by Tim on November 17, 2013

[note: This is in response to the recent statement issued by Autism Speaks.]

Dear Autism Speaks:

My child is not missing. He is right here. I just put him to bed a few minutes ago.

Nighttime is one of our most precious times together. I sing his favorite songs and say our ‘nighttime words’. Some may call it a script; I call it a holy liturgy.

When I am done, he gives me a quick kiss. Maybe he will go to sleep soon after; maybe he won’t. But I am there, and he is there with me. And neither of us are lost.

One of the songs I sing to him is Amazing Grace. These familiar words within its first verse became so clear to me upon reading your press release.

“I once was lost, but now I’m found.”

You see, before our J-Man came into our lives, I was adrift. I didn’t know what the purpose of my life was. I just did my work and often muddled through my days. dad-child-high-five

But then he came to us as the gift he is, and so much sharpened into focus. I never knew I could love another person like that. I never knew that the purpose of my life could become so clear and so wonderful.

When he was diagnosed with autism, sure I was upset for a time. Diagnosis Day was so very hard. But in time I began to understand that this was my life’s mission now. And I accept it gladly because it means I get to spend it with him.

To make it absolutely clear, I’m not merely existing. Rather, being an autism parent has taught me how to become fully alive. I even wrote an entire book called I Am An Autism Parent as a celebration of that journey of how he transformed me.

My son is not lost at all. He is wonderfully made. Everyone who meets him loves him. He has taught me through his perseverance and courage how to overcome obstacles. Not only is he not missing or lost, he has taught me to find myself too.

You are right at least about one thing. My life is lived moment-to-moment. There is no other way to live life. But you make it sound like a tragedy. I have come to see it as a gift about which to rejoice.

Our J-Man is aware of many minute details, objects, time, and space. Through his life, I have come to see them too, to slow down and become aware of the present moment and all that is contained within it.

You describe many challenges we do face. There is no denying these. However, you imply something that I find to be a horrible misunderstanding of a fundamental truth.

We are not facing these challenges alone.

We are not three million parents isolated from each other. We are a family. Like any family, we disagree about things and often don’t get along. But mess with one of our kids, and we will be the calvary for each other.

The problem is that you have cast a pall of fear over autism so that new autism parents and many who have been at this a while have bought the stories of fear and hopelessness. They see the darkness you have enshrouded autism in.

But we are here to tell a new and different story. We are here to shine a light on autism, to bring it out into the warm sunshine of day.

Ours is a story of hope. Ours is a story where we have each other’s backs. Ours is a story where we reach out for help and a hundred hands are there to greet us. I know this is our story because I am living it.

I have gone through a hellish year this year because of my personal health. But everywhere I turn, other parents, friends, and family have been there to help us. I have faced enormous challenges, but never alone.

This is the real story of autism. And your old story of fear and hopelessness is now finished.

My son is slowly each day developing his own voice. He may be years ‘behind’ in typical development, but slowly, surely, inexorably, he is developing his voice. He has things to say, edging their way out like a seedling toward the sun. And as time passes he will say more and more, and we will continue to rejoice.

And you will never speak for him. Our role is to help him learn to speak for himself, to proclaim his own truth, to direct his own life in the way he chooses. And I will teach him the same stories of hope, determination, and perseverance that my foremothers and forefathers passed through the generations to me.

One major crisis is that the general public doesn’t understand how awesome our children and loved ones, younger or older, are. You think they are lost and broken. And society has bought your lies. They treat those we love as second-class citizens.

No more. We are rising up as one to tell a new story.

You have wrapped this horrible story in half-truths. These are the worst kinds of lies. You were entrusted to be an advocacy organization, and you have betrayed us.

You call for a military-level response to issues of autism, and you will get one. We are the calvary, and we will tell our new story.

We will proclaim a new hope. We will proclaim the value and integrity of each and every person. We will respect each other in our diversity and welcome all persons to the table. Whether each person expresses themselves through their own voice, an assistive device, sign language, handwriting, or any of countless other means, their voice shall be heard.

You want a national response? You got one. Here we are. We are autistic and neurotypical and everything in between. We are parents, children, and adults and each of us loved, younger and older and every age in between, autism families, educators, and caregivers. We may disagree about many things, but we are one in our belief in those we love.

Whether it is my son, my friends’ children, or autistic persons of all ages – many of whom are adults you seem to deny even exist – we will fight for them with every ounce of strength we have. They will be valued and respected. They will have the supports they need to achieve the fullest expressions of themselves. When people put them down, we will have their backs.

We will carry our mission into every conversation we have, every school and office building, every legislature and branch of government. We are not in despair; we are relentless in our determination and hope.

We are not foolish. We know the challenges are enormous. But as I put my son to bed each night, I know that somehow I will be strong enough. He has shown me how to be strong, to meet challenges and overcome them, to persevere and never give up.

“Through many dangers, toils, and snares I have already come.
‘Tis grace that’s brought me safe thus far, and grace shall lead me home.”

Because of this I know this is not a crisis; it is pure grace. I reflect on all the other parents putting their children to bed, and I feel our solidarity, our oneness in love for our beloved children. I think of all my autistic adult friends who inspire me every day with their courage and rallying voices. We may have a long way to go, but together, I know we are going to find our way home.

We have come a long way in spite of you, and we will join together now to lead this movement forward without you. Let us go forth in respect, grace, courage, perseverance, and hope.

Allow me to close with the words I vowed to my son starting on his Diagnosis Day. It encapsulates everything I believe I should be. He was never lost or taken from me. He was right where I dreamed he would be. And I chose him, the day he was born and every day since.

I pledge to love you and be right there with you every step of our way together.

No matter what comes, no matter what challenges we face, no matter how frustrated you get or how afraid or overwhelmed you become or how much or how little you say now or ever, I’ll do everything I can to see you through.

jonas-cover-crop And together we will discover what you love most and what you most love to do, and we will help you share every gift you have with the world.

I chose you. I chose you the day Mama and I formed you and forever before that. I chose to walk all of the days since I was born to find the path to you, to find you right where I’d hoped you would be.

I chose you the day you were born. I’ve chosen you every day since. And I will choose you every day for the rest of my life.

You are our gift. You are the world’s gift. And there is not anything that could ever change that.

I am so happy that you are you.

Yours in celebration of the awesomeness of all,
Tim Tucker

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