August 2014

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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