We knew early on that my son would never gain independence. The diagnosis wasn’t the shock—the finality was. The question staring us in the face wasn’t whether his condition would improve, but what we were going to do about it for the rest of our lives. Neither my wife nor I wanted to put him in an institution, so we understood our fate: we were destined to be lifelong caregivers.
At the time, this felt like resignation to something undesirable. This wasn’t what either of us planned when we dreamed of having a family. But it was our duty as his parents, and we knew we were going to see it through. There wasn’t any joy in the idea. I felt it as a weight around my neck. My wife joked grimly about being a maid for life. Neither of us had opened our minds and hearts to the opportunity presented to us.
I remember sitting at the kitchen table one night after my son had gone to bed. My wife was washing dishes, and I was staring at a pile of medical bills.
“Sometimes I feel like I’m drowning,” I said quietly.
She turned off the faucet and dried her hands. “I know. Me too.”
We weren’t just tired. We were experiencing the malaise of accepting something negative. I felt I was being forced to accept something substandard, not good. There was a sense of doom and depression hanging over me. It never occurred to me to look for the unique goodness in my circumstances.
I deeply understood that resignation is not acceptance. I tried to claim I accepted my son and my life circumstances, but I really didn’t. I would have changed my circumstances if that were possible. I was resisting what was, and still is. When I realized that, I knew that resignation wasn’t acceptance. Resignation is still resistance. I decided that accepting the negative wasn’t the right answer. It wasn’t a call to strengthen my denial. I needed to reframe how I viewed the situation and redefine what victory looked like. The alternative was lifelong unhappiness.
There is supposed to be a way to be happy irrespective of circumstances. Not that I knew how to do that. But it gave me hope that there was an answer.
Not Accepting Your Child as Broken
Many parents believe that accepting their special needs child is accepting defeat. They accept the condition exists but view their child as broken and defective. This is the final trap that catches all but a few lucky parents. It’s the default condition when all denial is exhausted. The purpose of acceptance is not to grin and bear it. You are not looking for the sliver of good in something overwhelmingly bad.
Heroic stories of acceptance often miss the point. Most of the books on autism propagate the view that autistic children are broken and need to be fixed. A recent trend in these books is to glorify stories from parents who accept their “broken” children. These acceptance stories portray the parents as heroic. After all, they must endure something really awful, right?
If they accept their “broken” child, they’ve failed to recognize that their child was never broken to begin with.
Your child is not broken. You are.
Did you have a reaction to that idea? Did it make you angry that I suggested that you might be the broken one? How does it make you feel to be viewed as the broken one? Is it pleasant? Do you feel accepted or uplifted?
Now think about this: How does your child feel every time you look into their eyes, and they know you think they are broken, defective, not acceptable, not lovable?
Put this book down and sit with the for a minute. Let the pain, the horror of that feeling penetrate your heart. It’s a pain you inflict on your special child every day.
You must change how you view your child. There is no acceptance while you view your child as broken. Children do not need to conform to some neurotypical standard set by you or by others. You must learn to view them as perfect, or perfectly acceptable just the way they are.
My Spiritual Awakening
Accepting my special needs child was the answer to my own spiritual quest. My son had to be the key. He is a source of strong emotions for me. My emotions were conflicted, which served as a disturbance to my peace of mind. There was no joy and happiness unless I found a way to overcome my grief.
However, I was trapped in the negative judgments from my initial reaction to the diagnosis. I defined my problem as the need to accept the bad. I was supposed to acquire a taste for shitburgers, as crude as that sounds. I couldn’t conceive of another way.
I didn’t realize that I had made a mistake years ago, when I first realized my son was special. I made a natural reactive judgment that my son’s condition was bad. That bad judgment was never questioned. It provided a conceptual framework to interpret everything that followed. I had created a prison in my own mind, and I was trapped inside it. Since I didn’t know I was trapped in a mistaken belief, I couldn’t see a way out of my dilemma.
Acceptance is the Opponent to Anger
Acceptance is a mind that welcomes whatever occurs without resistance. We constantly make judgments about what we want, what we don’t want, and when we want it. These judgments set up the conditions for disappointment and for anger to arise. The stronger our preferences, the stronger our reaction will be when things don’t turn out as we want.
The mind of acceptance has no strongly held preferences with no importance on fulfillment. Acceptance is the opposite of resistance. Acceptance is to wholeheartedly accept things exactly as they are and not want for circumstances to be any different. This was the definition of acceptance that changed my life.
Acceptance requires two related spiritual practices: a mind of non-judgment and a mind of non-attachment. It’s difficult to obtain and sustain a mind of acceptance without the other two practices.
Non-judgment Supports Acceptance
The three conditions that generate anger require a judgment as to what’s desirable or undesirable. When you obtain something you want, you judge it to be good. If you fail to obtain something you want, you judge it to be bad. If you obtain something you don’t want, you judge it to be bad.
If you don’t make the good or bad judgment, whatever you obtain or fail to obtain doesn’t have the power to upset you. If you don’t put much importance behind the judgment, whatever occurs doesn’t have the ability to upset you either. With a mind of non-judgment, even what most would consider dire circumstances won’t disrupt your peace of mind.
Acceptance makes no judgments about good or bad that would trigger attachment or aversion. Acceptance revels in pleasure without clutching after it and endures pain without pushing it away. Acceptance takes whatever comes and ignores the rest.
Non-attachment Supports Acceptance
If you clutch after objects, you will become distraught when they’re consumed or lost. If you cling to people, you will become upset when they fail to meet your expectations or leave you. Whether it be objects or people, if you lose something that’s important to you, you will suffer due to your attachment. If you don’t resist the loss, if you accept whatever happens, the loss may sadden you, but it won’t be a cause of suffering. And you won’t get angry about it.
Impermanence Overcomes Attachment
We all form attachments. Whenever you obtain a resource you feel is important, whether this be a person, place, or thing, you naturally don’t want to lose it. Parting is not sweet sorrow. Losing something you value is painful. Digesting this loss requires enduring sadness. Resisting the loss makes it worse and leads to suffering.
The sting of attachment comes in other forms as well. Sometimes you obtain things you didn’t want, like an illness. Sometimes you fail to obtain the thing at all, creating longing and disappointment. The most common reaction to loss is anger, resisting what is, and avoiding accepting reality.
How to Avoid Forming Attachment
Gratitude for every moment helps avoid forming attachment. If you are keenly aware of your good fortune to be alive, have sufficient resources, and enjoy a few comforts, then you can revel in each moment as precious. When conditions change, you let go of what you had and embrace the new reality.
Meditating on death and the facts surrounding death is the cornerstone of addressing attachment. In addition, it serves to motivate you to focus on what’s really important rather than wasting effort on worldly concerns.
I meditate on death often, and for a time, it was a primary practice. Meditation on death changed my life. I devote my time and energy to my son because of the death meditation.
I stopped pursuing extraneous worldly concerns that were largely motivated by the desire to make more money and consume more. I stopped chasing fame, fortune, or status of any kind.
I still provide for my family, but I do it for them, not for me. I learned a key lesson about impermanence, which helps me with my attachments.
You Are Going to Die
Mostly, we go through life seeking objects of our desire, laboring under the false idea that happiness can be found in wealth, status, or a good reputation. We expend tremendous amounts of energy toward obtaining things and attaching ourselves to them, only to find disappointment when these things don’t bring us the happiness we desire.
You’ve heard the expression, “you can’t take it with you,” and we all intellectually know that to be true, but do we really live our lives as if it were true?
Consider the following story:
Some children were playing beside a river. They made castles of sand, and each child defended his castle and said, “This one is mine.” They kept their castles separate and would not allow any mistakes about which was whose. When the castles were all finished, one child kicked over someone else’s castle and completely destroyed it. The owner of the castle flew into a rage, pulled the other child’s hair, struck him with his fist and bawled out, “He has spoiled my castle! Come along all of you and help me punish him as he deserves.” The others all came to his help. They beat the child… then they went on playing in their sand castles, each saying, “This is mine; no one else may have it. Keep away! Don’t touch my castle!” But evening came, it was getting dark and they all thought they ought to be going home. No one now cared what became of his castle. One child stamped on his, another pushed his over with both hands. Then they turned away and went back, each to his home.
Do we act any differently than these children? We live our lives building castles in the sand only to leave them behind as meaningless when the long night of death falls.
Imagine for a moment that you accomplished everything you wanted in life. You succeeded in all your worldly affairs. Perhaps you’re Jeff Bezos and you’ve accumulated a $100 billion fortune. Or perhaps you’re Tom Brady and you won seven Super Bowls. While these are amazing accomplishments, both of these men will die, and when they do, they won’t be taking any of their wealth or attainments with them. In fact, if they cling to their attainments on their deathbed, they will feel anguish and sorrow, and they will endure a great deal of suffering. How will their worldly attainments benefit them then?
You are going to die. You could die today. None of your worldly attainments or possessions are important. You won’t be taking any of it with you.
Shortly after your death, your possessions will be disbursed to various people, and your corpse will be disposed of.
A form of you remains in the memories of those who knew you. Those who outlive you may remember you kindly, or they may not. You may have a memorial headstone, or no permanent record of you may exist at all.
Everything you worked for, struggled against, hoped, dreamed, felt—everything will be summarized by a dash between the dates on your gravestone. Most people won’t have any more details on your life than what’s contained in that dash.
After your funeral service, most people will go back to their self-important thoughts, and thoughts of you will arise less and less often until you are finally forgotten.
A hundred years after your death, everyone who knew you will also be dead (not that they spent much time remembering you anyway), and nobody will visit your gravestone. Even your gravestone will finally be forgotten or destroyed.
All evidence of your existence will be gone.
As the band Styx pointed out in “Nothing Ever Goes as Planned”: “Even pharaohs turn to sand, like a drop in the ocean.”
Given these facts, why would you waste your time building castles in the sand?
Given these facts, why would you attach yourself to anything?
If you don’t attach yourself to life and worry about everything, life becomes a grand adventure full of fun and excitement. When items you desire come to you, you enjoy them with thanks, and then you let them go.
Recognize the Impermanence of All Things
When you recognize nothing lasts forever, you aren’t as inclined to attach yourself to it because you know you won’t be keeping it forever. This doesn’t just apply to objects, but also to people and life circumstances.
When you have something pleasant and impermanent, the natural reaction is to feel thankful for what you have. Thankfulness is the opposite of entitlement. You cherish objects, people, circumstances while they last more than before because you know you won’t have them later. Impermanence doesn’t make you hold tighter; impermanence helps you let go.
Attachment and Your Special Needs Child
I am attached to my special needs child. It’s hard to write a book like this without coming across as someone who believes they have it all figured out. I don’t. I am still attached to my special needs child. My aunt and uncle lost their son tragically several years ago. Every day I think about my cousin. His death reminds me about the preciousness of each day with my son. My compassion for their pain shows me the depth of my own attachment to my son.
Special needs children are helpless, which makes them dependent. This brings out the caretaking instincts and makes them even more lovable, in my opinion. My relationship with my son is the most important feature of my life.
My son, and my attachment to him, is something I work on. I can write about the need to reduce my attachments. I find recognition of impermanence helpful as I appreciate my time with my son more. But I can’t honestly say it’s eliminated my attachment to him. If he were no longer a part of my life, the sadness would be difficult to bear. I watched my aunt and uncle endure the loss of their son, and it was heartbreakingly difficult.
Your Special Needs Child After Your Death
Every parent worries about what will happen to their children when they die. Parents of special needs children have added worries. Who will take care of your child? Who will love them? Will they be exploited or abused? Unfortunately, these fears are made worse by news stories where these fears come true.
There are social safety nets in place. Social services will always feel inadequate. Everyone wants the best. Social services are chronically underfunded. High-tax states have better programs. But they do exist.
Someone will be responsible for your child’s care. Government social workers, friends, family, community—developing and maintaining strong social ties in your community will help with your peace of mind.
Asset Planning and Special Needs Trusts
If you are fortunate enough to leave behind assets, you can take extra precautions to ensure your child’s care. Special needs trusts designate three important parties. Basically, you pay to set up the support system to provide more than state social services provide on their own.
The attorneys that administer the trust and settle disputes, the financial trustees appointed by you or your attorney to manage the money, and the advocates who know your child (adult) and advise the trustees on how to spend the money to benefit your child. These advocates can be family, friends, or charities that do this work.
If your special needs child has siblings, and if they maintain close ties, that person is natural support. I had a co-worker for two years whose older brother was autistic. I had many conversations with her on what that meant to her and how she felt about that familial responsibility. For her it was an unquestioned duty that she took on with love and compassion. Perhaps she was exceptional, but I suspect her outlook is more the rule than the exception. Unfortunately for my son, he is an only child.
Having a special needs trust in place is insurance for peace of mind.
Non-judgment and Your Special Needs Child
Did you immediately judge your child’s condition negatively? When you realized your child was special, did you assume your life was permanently changed for the worse? I did. Did you assume your child would be a lifelong burden on you? In your self-centered musings, did you ever stop to think about how being special impacted your child?
I was guilty of all these terrible thoughts. You’re not bad for your thoughts and reactions. Just don’t get stuck there. Since you concluded having a special needs child was negative, have you questioned that judgment? Are you completely certain that it’s bad?
Do you condemn your child due to their condition? This is surprisingly common. The belief is rooted in the notion that the child will change to avoid your condemnation. It fails with typical children too. But it’s particularly counter-productive with a special needs child. They didn’t choose their condition. And they can’t correct it. Negative judgments make you and your special needs child unhappy. You won’t cherish your child if you view them negatively. You will resist your child being who they are. You will subject your child to futile treatments to try to make them something they are not.
Abandoning your negative judgments about your child and their condition is the first step in curing your dysfunction. Your child has special needs, something you deal with.
Your child is fine; you are the one with a problem.
