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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Caring for Your Older Autistic Sibling

by Tim on October 18, 2013

I realize I haven’t talked a lot about our younger son, who we call Dale Jr. here. He’s now 4 1/2 years old and is exceptionally bright and observant for his age. He misses almost nothing, and is routinely telling us about all the new insights he comes to. Not a day goes by that we don’t marvel at some new bit of wisdom he’s discovered.

He also asks a lot of questions. After all, asking questions is certainly a sign of intelligence as well. However, there is one area largely missing from his questions: Why is his brother not like all of his friends or himself?

We have certainly raised him to believe that differences are a good thing, and we don’t make a big deal – or any deal at all – of the J-man being autistic. To us, it’s another way of experiencing and processing the world. We do our best to celebrate each of our two sons’ unique gifts.

dale-jr-and-jman If Dale Jr. were to ask questions about his brother or about autism in general, we would certainly do the best we could to answer them. But it seems to me that he simply sees him as his brother whom he loves, and that requires no explanation for him really.

We went to Dollywood over the summer – the first amusement park trip for either of them. It went better than we expected, though there were still numerous challenges. We had to keep a pretty tight rein on both of them in the crowds, but keeping close tabs on the J-man’s sensory and social stresses took up a lot of our focus. And I think Dale Jr. sensed this.

We stopped in one of the park’s restaurants to get something to eat, and Dale Jr. took his brother’s hand and led him through the line. He began narrating the food options from the menu to the J-man (he’s an impressive reader for his age). It was so sweet to watch him take care of his older brother. And never has he made a big show of it.

He has even become one of the J-Man’s ‘translators’. Our J-Man is minimally-verbal and with regard to verbal speech is roughly equivalent to a 2 or 2 1/2-year-old. When he does talk, his speech sounds can be very difficult to understand to all but a few people. Sometimes even we have to ask him either to spell out the word he’s saying or type it out on his ‘talker’ (speech device). Dale Jr. has become at least as good at understanding the J-Man as we are, and he’s more than happy to help others understand him with no hint of awkwardness or self-consciousness. It really is beautiful to see.

Lately, Dale Jr. has developed a keen awareness of when we are meeting with someone related to the J-Man’s autism, like the doctor, therapist, services provider, etc. It’s become very important to him to tell whoever we’re talking with that “my brother has autism.”

I’m not sure what thoughts are going through his head while he does this. I don’t yet know what he thinks autism is. I imagine he’s not completely sure either. And that’s ok. What is so wonderful is that he is clearly doing it because he’s looking out for his brother. And he doesn’t seem to be doing it out of any sense of obligation. He does it simply because he loves his brother.

He has a pretty keen ‘autism radar’ in public too. He has seen other autistic kids and gone over to play with them. If the child doesn’t reciprocate, he doesn’t make a big deal of it. He just innately understands. Recently he was with me at the J-Man’s school for pickup, and he had on a Wonder Pets sticker. Several of the kids at school are really into the Wonder Pets, and he loved the attention of having the kids come up to talk to him about Ming-Ming. Dale Jr. can be rather shy, but he seems at ease in situations like these.

I believe he will have amazing insights to teach his peers and adults about autism. He already is. He identifies it with someone he loves. He doesn’t fear it. That he loves his brother and autism is part of his brother is enough explanation for him.

Perhaps we overcomplicate everything when it comes to autism. Extend love and kindness to others, and let go of any fear. Take care of those dear to us. Love and value people for who they are. It really is that simple. My 4 1/2-year-old taught me that.

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I Am Disabled

by Tim on October 9, 2013

I am disabled. There. I said it.

And today is my 40th birthday.

And I’m coming out of hiding so that something good can come of this.

As you may have noticed, I have been absent for several months from blogging. I have popped up occasionally on Facebook, Twitter, and Instagram, but mostly I’ve been laying low.

And by laying low, I mean… well honestly, I’ve been in continuous pain. I suffer from constant migraine headaches. I’ve had fewer than 24 total pain-free hours since January. If I’m not completely asleep, I feel pain. Even sleep isn’t much of a respite because the meds I’m on regularly give me nightmares.

Silhouette of young man against blue curtains I stopped blogging because I didn’t want to face my new reality. I wanted to believe it would get better. I wanted to keep pretending that a cure was just around the corner, that the dozens of doctors’ visits would be enough. But now it’s time to face reality so I can move forward. It is reminiscent of our J-man’s Diagnosis Day, except this time it’s me.

They have some ideas about at least part of what’s causing the headaches, but other aspects of it are still a mystery. All treatments to this point have either barely helped or failed entirely. And I have a small army of good doctors trying to help me.

Each treatment has held the promise and hope that maybe this is the one that will stop the headaches and let me return to normal. Each time, that hope has evaporated. I feel like I’ve sung these refrains before in our J-man’s early days of therapy. But again, this time it’s me.

At a recent neurology appointment, we discussed the latest procedure that hadn’t worked. This should have been the one to fix it, but it didn’t. We talked honestly about how my pain is actually getting worse, the medication side effects are piling up, my body is unraveling, and my emotions are frayed.

And then he said a word I had never even thought about in reference to myself. I could not have possibly conceived of this word ever being used about me.

“I think it’s time that we look at this as a disabling condition.”

And even then it didn’t register.

A couple of minutes later:

“Now this may only be a semi-permanent disability, but since you can barely work you should consider filing the paperwork to go on disability.”

The jagged points of his words started to penetrate my mind.

I really am disabled, I thought. I can’t believe it has come to this.

I don’t know how to make my peace with this yet. I know it may not be forever, but it’s certainly going to go on for a long time.

I have gone from marathon runner to disabled in less than a year. These constant headaches have stopped my life cold. My business has all but fallen apart. I can’t do even half of what I need to do around the house. I’m now at my highest-ever weight. My ability to play with the kids and be the kind of dad I want to be for them has deteriorated badly.

I feel like I am often a burden. I can’t do my share around the house. More and more people are having to help me do things. I’ve put on a good show and hidden a lot of this from people, but I can’t anymore. I need this to be out in the open now.

Mary and I talked the other day. We are both at our absolute limit. We need help. And I don’t ask for help very well at all. We won’t survive without it, though. I know the first step is being honest about where we are.

There are turning points in our lives where so much changes. Diagnosis Day was that way for our family. And now this public statement of who I am becomes another turning point. I am no longer the person I was, and I don’t know yet who I am going to become.

But as he did with Diagnosis Day, our J-man is teaching me how to handle this new challenge. He, too, is, by any measure of the word, disabled. He depends on us and others for most every daily task. No one values him less because he isn’t able to do these things, though. He’s the embodiment of love as simply being who you are, not what you can do or not do.

I am trying to extend this grace to myself even as I feel like a burden. Mary is having to do much more of the daily chores and tasks of our family. Our finances are in even worse shape because I can work only barely, if at all.

I am learning to accept that I am loved regardless. I am struggling to find new ways to contribute to the daily needs of our family. I am trying to learn how to ask for help and accept the generosity of others when that help comes. These are things our J-man has already figured out. He is again my teacher at a critical turning point in my life.

And he is showing me one last lesson that I find myself clinging to now. Just because I am faced with many challenges and limitations, I can still have goals and dreams. They may be different than the ones I started with, but there will be great things I can still do.

I will still make that dent in the universe.

I have sought out people to help me discover what my new path will be. I have been reminded that the best way to find healing and support is to be open with your friends and the tribe of people who love you. They have rallied to help me. I can’t even begin to convey how much this means to me.

It has reaffirmed what I hold as a personal truth. Most people are inherently wonderful, and they want to help. You just have to give them the opportunity to help you.

I’ve decided to give myself a clean slate. It’s a new day and a new year. This is now my new life. And I feel strangely hopeful in the midst of the pain and fear. With the help of family and friends, I have overcome challenges before. And despite the fact that this challenge is perhaps greater than any before, I have faith that together we will find something wonderful to make of it.

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This is the story of how I let my body fall apart. This isn’t quite yet the story of what I’m ultimately going to do about it, but that story is coming.

Today is also Diagnosis Day, the fifth anniversary of the day our J-Man was diagnosed as autistic. It’s often a day of many emotions for me. I look back at this autism journey we’ve been on. I see how far we have come on this road.

CautionAfter spending the first couple of Diagnosis Days wondering how to celebrate it, the last two years I’ve celebrated this road by literally running marathons on it.

But then lately somebody planted a bunch of signs in the middle of my road. And I hit them. And it hurt. A lot.

I am writing this because the signs said, You are killing yourself. You are being stupid. You need to stop. Maybe you are seeing the same signs, and perhaps you can learn from my bad example.

I’ve been struggling for months with what I originally thought were ‘serious, chronic sinus headaches’ but which evolved into full-on, nuclear, apocalyptic migraines that have now lasted in some form 24 hours a day, 7 days a week, for almost the past two months. I have had less than 24 pain-free hours since January, all of which were thanks to strong narcotics.

After a long history of sinus and allergy issues, I figured these would eventually subside enough for me to start functioning OK again. It’s an ongoing cycle with me as the seasons change. I rationalized my way to various excuses. This turned out to be an epic mistake.

This wave of headaches that began in January didn’t go away; they just got worse and worse. The obvious solution was to make a doctor’s appointment, except I didn’t have a primary care doctor. The last two doctors I had were terrible, and I just gave up years ago trying to find a new one. Sorting through the available providers in the midst of headaches is not really the time to do that, but I finally did.

The earliest appointment I could get with someone recommended to me was three weeks after I finally made the call, a call I made at the kitchen table, sitting in the dark, in agony, while I was holding my head up with one hand and holding the telephone with the other. I hung up the phone and cried.

I made a lot of mistakes here, and as I approach my 40th birthday this year, I realize these are mistakes I can no longer afford to make.

A friend of mine was diagnosed with testicular cancer recently. He was smart enough to do the right things and catch it in time. A family member not that much older than us died of cancer recently. I have friends diagnosed in recent years with MS, strokes, and other possible life-threatening or life-altering conditions. Approximately 1-in-50 of my high school graduating class are now dead.

I am painfully aware of how important it is as an autism parent for us to be around for the long run. If something happens to one or both of us, I don’t know what would happen to our kids. Assuming we will be around, the quality of our physical lives is essential to being the kind of parents we want to be. There are many demands in our daily lives, and we want to do more than just survive. We want to be great parents.

Throughout this migraine disaster, Mary has had to be both parents most of the time. We both need to be somewhere in the vicinity of our best most of the time, but instead I’ve been nearly incapacitated.

I screwed up, badly. I didn’t have a plan in place to take care of myself. I ended up not waiting that three weeks and took myself to urgent care, got a CT scan (thankfully was clear), and was treated for a sinus infection (which I did have), but urgent cares aren’t designed for ongoing relationships of medical care. The headaches got a little better but then went downhill again. I finally limped into that appointment with my new doctor on the edge of physically falling apart. That was almost three weeks ago now. Today is about six weeks after I originally made that phone call.

I barely remember the last three weeks. It’s been a fog of medication, scans and labs (all normal, thankfully), numerous doctor visits, lots of time trying to find specialists, more trips to the pharmacy than I can count, lots of time bedridden or unable to get up out of the recliner, so much missed work that it’s a wonder I still have clients, and a trip to the emergency room when I just couldn’t take it anymore. And they still don’t know why I’m having crushing migraines.

I started writing this post weeks ago. My words have meandered and morphed and the point of this post has changed several times. I’m still hurting and my brain is clouded by the medications that are trying to make me better.

But here’s the cold, hard truth. And I accept it. If you absorb nothing else of what I say here, read this because you need to understand this for yourself.

This is my fault. I should have put things in place to take better care of myself and my health. I should have had a regular doctor. I should have gone to the doctor when I started having sinus and lesser headache issues last year. They could have done more to determine a baseline. It would have been much easier to look at prevention and lifestyle changes then. Now, I’m just surviving the day. And everyone around me is paying for it. I let Mary down. I let my kids down. I let the people I work with down.

Redeem YourselfI am not being hard on myself, so don’t even say it. It was my choice to not seek care for myself. It’s my responsibility and my choice. And it’s your choice. You don’t get to let yourself off the hook either.

I made many poor choices. I thought by exercising regularly and eating relatively well that I was exempt from all the other stuff. Wrong.

There are things you do to take care of yourself and to have the people in place you need to look after your health. There are things you do to take care of yourself and your health because you want to show respect to the people you love, to the people who love you. I didn’t do that. And my family is paying for that.

Learn from my mistakes. Take care of yourselves. Get a primary care doctor if you don’t have one. Get a yearly exam. Get your labs and scans done regularly and establish a baseline for you. Go to the doctor for chronic problems long before they get out of hand. It’s so much easier to prevent something or stop something early.

When this is over, I will have learned a very hard and painful lesson. I have lost most of 2013 already, and I will have many, many lifestyle changes to make.

One of the best ways you can say “I love you, too” to your spouse and child is to treat with respect the one they love – yourself. So, start doing that. Right now.

Image credits:
“Caution” – Creative Commons License ptufts via Compfight

“Soda and Pet Food City” – Creative Commons License Rusty Clark via Compfight

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I am not a Catholic, but I decided to observe the election of Pope Francis and his surprise choice of papal name by reposting the Prayer of St. Francis for Autism I wrote a couple of years ago. St. Francis of Assisi is one whose example and words of compassion, strength, encouragement, resolve, and hope have spoken to me over the years, and it seemed fitting to me to post this here again today.

May we on this occasion recommit ourselves to serving and advocating for everyone in the human family until all are celebrated and loved.

A Prayer of St. Francis for Autism
by Tim Tucker

Lord, let thy peace fill me up until I overflow;
that where people cannot speak, I may be their advocate;
that where anyone is rejected, I may extend my arms in welcome;
that where parents are heavy burdened, I may offer a word of comfort;
that where our children struggle, I may lift them up and cheer;
that where some see disability, I may reveal to them extraordinary gifts;
that where others judge, I may share with them my deep gladness;
and that where any are overlooked, I may help the lights of all to shine.

O Giver of These Gifts,
grant that I may not so much seek to be reassured as to reassure;
to be praised, as to praise;
to be accepted, as to accept;
for it is in all our uncertainty that we are inspired to hope;
it is in great challenges that we discover our greatest joys,
and it is in our community of wanderers that we find the way home.

Amen.

 

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