Every parent wrestles with trust. We worry about who could possibly hurt our children. Deep in the core of our being we are often terrified and conversely inexplicably hopeful about our children’s futures.
We can be terrified of who to trust our child with and hopeful we can find circumstances, people and environments that are trustworthy. All parents find themselves slave to worry and hope simultaneously.
This dichotomy is amplified for parents of differently-abled children. We know the statistics (Department of Health and Human services report over 68% of disabled children have been abused or bullied) and we have experienced it first hand.
My son has a long-held expression: “we hope see.” The sentiment of “I hope so” and “we will have to wait and see.” This has been a life saving concept implanted in the black and white world of an autistic mind. It’s not a list he makes. It’s not a date fixed on the calendar he references. It’s not a musical note sung by a singer whose name he likes to recall. It’s a concept carved from the stone of life. Carved with tears, frustration and joy from life experiences.
Autism and ambiguity are like oil and water. A thing is or it isn’t. It’s liked or not. It’s one of the aspects of a differently-abled persons life: the black and white processing lens affixed to life. Concepts are the fluidity of life parents of autistic children strive for–providing constant mental pliability and expansion for our children.
It might seem inexplicable now how I let the trickster enter into our environment, our carefully guarded circle of trust. And the truth is while 20-20 hindsight is wonderful, hope obscures what is in front of us to see.
Hope that your history together has meaning.
Hope that people actions match their words.
Hope that when someone professes ‘more than anything I want to grow and change’-they do.
Hope that people mean what they say, and say what they mean.
Hope that people do what they say they will do.
Hope that people will choose, like I do, the innocents needs first and theirs second. No matter what.
I can only tell you I was hopeful. A hopeful parent. The trickster had a forked tongue, forked mind, forked heart. And my hope wrestled with all of it.
So after all the failed promises, and after months of narcissistic excuses, reasons why and passive-aggressive entitlement that their upbringing didn’t give them the ‘ability to know how to act’ I was past done and had traveled all the way to livid.
‘We hope see’ became tattered and frayed.
Emotional pain had been foisted upon my son. The culprit: the tricksters vague and non commitment to the trickster’s freely-made promises to my son or avoidance of the same.
Emotional pain from inability to understand the concept of deceit.
Inability to understand if he is not allowed to hurt others when he has emotions-why does the trickster get to?
Inability to understand how another person can change from good to bad. From friend to not friend.
Hurting from innocently friending a trickster.
My son, Zach doesn’t have a concept for this emotional pain paradigm. If I am really honest, I don’t want it to be necessary for him to have need of this concept or of this kind of paradigm. But protect as I might, it isn’t life.
And as much as typically-abled parents struggle with balance between the shield of protection and toxic life experiences, I find with my differently-abled child the struggle is astronomical. Hope is a constant struggle.
We teach typically abled children about heartbreak and disappointment. Life teaches them as well and we parents do our best to help them discern acceptable behavior, instill character, kindness and goodness.
We know we get jaded and our kids get jaded as they grow. We know deep in our hearts it’s part of the human dilemma: taking life as it comes and keeping an open heart and an open mind. I find myself constantly consciously “unjading” myself. I call it my Spiritual Practice.
It’s hard enough for us ‘typically’ developed humans to endure the heartbreak. What about the differently-abled? Each one is unique. I never know until we are in the midst of an experience how much is understood until it is demonstrated–or not.
My first rule with the ‘biggies’ of life, and heartbreak is certainly a biggie, is to keep it simple.
Validate. Validate. Validate.
“Yes, she said she would, and she isn’t giving you an answer. That is not a good adult choice.”
It’s key words and context that allows him to process. He knows he sometimes has adult growing pains, so others do too.
“I hope see he says.” tears are in his eyes.
I know he is hurt. I tell myself: “Validate. Validate. Validate.”
“Yes, I know you are hurt, when a friend isn’t nice it hurts. I know it is frustrating. But you didn’t do anything wrong Zach. I am very proud of you: talking about this and I am very proud of you to make good adult choices and focus on all the other kind people who love you in your life.”
We list them. All the kind people. Because in autism there are lists, always lists.
“Hero, Nutmeg, (yes I know they are dogs, but it’s his list) Mom and Dad (I insist and I know we really don’t count) Gpa Tom, Rachel, Sister Bear Ashlee, Carole, Joe, Michelle, Harry, Mike, Nate, Anna, Lauren, Mali, JT, Dan, Vito, Ms. Kim, Vaughn, John, Elijah, Payton…”
Name after name he provides, and I write them down.
And then he asks about the trickster. My heart breaks more for him. She has done what she has done and I know her name doesn’t belong on this list. But he does not.
I ask him, “do you think she loves like mom or dad?” no answer.
“Do you think she loves like Sister Bear Ashlee?” “No!” is his immediate answer. No processing needed. ‘No’ is a complete sentence, verdict and experience intertwined.
“We know what love is.” I say pointing to everyone on the list. “her mind is broken and doesn’t know what love is,” I say as I write her name down next to the list. I write the word she has given Zach for her ‘problem’: depression. I know that isn’t what it is –but I’m going to keep it simple for his sake. He has seen her write the word for him. I hope he understands it is her-not him. That is the important part–it is HER.
I validate that just because she is depressed, doesn’t mean it is okay to ignore a promise. I remind him it’s the same for him. When you make a promise you have to keep it.
“Yeah,” he says, “make good adult choices with me.”
I tell my son again how proud I am of him, for making the good adult choice to love. I tell him it’s good to love people and keep remembering the ones who love you back. Focus on them I tell him, the ones who love you back.
I can see he has questions by the look on his face. We breathe together and I wait for his questions to come in his own time. It more like hope they come. Hope the questions don’t fall prey to the thief called autism.
The first one comes in the form of the photograph of the two of them. It’s a recent selfie both are in.
“She remember me. I brother bear.”
You and I would say something like, “didn’t this (place or experience or time we shared) mean anything to you?”
He is saying, “I didn’t imagine this. She called herself my sister bear–look here is the picture to prove it.”
We write down question #1: What about me?
“Keep it simple,” I remind myself.
I ask him if there are other questions he’d like to ask.
He says, “she promise to me Zach”
We write down question #2: “you made me a promise. Are you going to keep your promise to me?”
“I good brother bear” he adds.
“I hurt” he adds.
I write it down, uncertain of the question it is to become.
I’m quiet and still. I’m edgy, fearful of interrupting his processing and very aware of my own parental heartbreak as his struggle with processing and articulating his heartbreak unfolds.
Moments pass. I think he is about to wander off as I see other competing thoughts emerge in his eyes.
“I think those are good things to say Zach.” redirecting him, pointing him to the questions and list, I’m really proud of you for using your words.”
He takes the list of people he created of who loves him and the questions and disappears upstairs. Like that- he’s done, it’s over. He wants some time to himself.
I don’t know what he’s going to do next. The quintessential question we ask our kids, “so what are you going to do?” Is not in our lexicon. It’s not a concept we have carved yet.
My ‘hope-see’ has been washed away in the flood of my son’s tears the last few weeks. Essentially it’s the same conversation, again and again. He reaches out to the trickster in familiar ways to them both, requests for the friendship he thought was real and the promises of it to be fulfilled–in his way and then receives the empty answers dishonoring the friendship and the promise.
A review of the their text conversations demonstrates the unavoidable: she uses people to fill her needs and when they no longer do-she tosses them. I suspect she even prides herself on how she ‘frees them from her inability to have relationships.’
I send off a message, putting down a boundary. Either answer him appropriately: full responsibility for freely giving a promise you have not kept and full apology–or it’s done and over and we’ll close the doors to communication that have been open waiting for you to do the thing you said you wanted from him: “keep the friendship with the ‘kindest, most loving, funny person I know.”
I’m not nice about it. Still livid at the de’ja-poo manipulative crap. Crap I have seen over and over. Livid at her seeking to discover what another wants so that it can be pridefully withheld.
It’s hard doing something against my own preference. I can’t really trust this person any more. They have betrayed all they claim for themselves in their life, they certainly are not trusting material. So why even continue to leave a communication door open?
This is where the differently-abled parent kundrum lives. What he wants in this circumstance is not what I want. He wants to hope for the friendship. I know she doesn’t know what friendship or love really is. I want to protect him.
But there is something else I want. I want to carve another concept from the stone of life. I want my son to know there are people in the world who care mostly for their own needs above anyone and everyone else—and I want him to know the nature and energy of these tricksters and stay away from them as easily as he knows a raptor from a songbird.
The unbidden lesson from life I wish I could spare him and I can not.
The unkept promises my son spoke of were in the form of a recent list. Freely initiated and freely made: a written list, jointly constructed between them of things they would do in the unfolding weeks, months and years. Activities they would do together. Trickster gave unsolicited assurances: while things were changing in one area of life– that nothing would change between them and they would always be brother and sister bear. The list, his cornerstone for the new road ahead, the list, his comfort amidst the change. In autism there are always lists.
He still ‘hopes see’s.’ It’s clear to all of us witnessing the unfoldment of her lacking responses, hope will not be rewarded. But my son must come to his own decision. He has the right to have this experience. To have the self determination of his own life.
I am not powerless. I pray. I pray some more.
The issue is: he needs to know with clarity, what she intends.
So I send the boundary. You’ve had weeks to answer him. Enough, either contact him immediately with the clarity he needs or it’s done.
Zach has sent a picture to her. A selfie of her and him.
She only texts back a heart emoji.
He then asks her the questions. As best as he can put them to her.
“You made promise to me zach. i brother bear you hurt me not keep promise I good brother bear I what about me?”
I don’t know yet that he has sent a message. Zach’s phone is, “his personal and private.” No one is allowed to touch it-especially the ‘rents.’
Another mystery of special needs parents. How do you protect them and give them freedom to grow all at the same time? There are always more questions than answers in special needs parenting.
The message he sent is quite remarkable. Yes, it has syntax and grammar hiccups. Yes, the message could even be viewed as word salad. But that is Zach. it’s all there though. He even added a question mark at the end!
The trickster over the years has deciphered and discerned his texts and notes to her. There can be no mistaking. She knows what it says.
She answers the picture and question he sent: “that is a good picture”. And asking, “what promise are you talking about?
Responding to the boundary, but in her de’ja-poo fashion: animates objects and actions not the people responsible for them. The person- she-is inanimate. Responsible for nothing and victim to everything.
She turned the once joyful experience of a text into a void. Meaningless and hollow with no commitment to action, being brother bear means nothing to her anymore. And Zach knows now.
It will take months, maybe years for the words to be fully spoken and processed.
But he knows. His face and eyes show it.
Zach has a memory like a steel trap. He remembers days and the date events occurred-events we’ve long forgotten. The place and date and day we saw some obscure concert. Or Eagle. Or got lost. Or, or, or.
He knows she lied.
He know she lied freely, willingly.
He knows she doesn’t mean what she says.
No more hope she would keep her promises.
No more hope for friendship.
He texts back, ‘you did not tell me you forgot me.’
And then nothing.
Because he knows.
The parent in me will continue to carve this concept from life’s stone. I will keep it simple.
I will validate. I will love.
It’s not him-it’s her and it hurts I know.
He is wonderful and kind and loving and a blessing to all in his life.
Focus on the list of who loves you back.
People go off the list and people come on the list.
But there is always a list.
As he continues to heal and grow I am grateful.
Grateful I can and he can still ‘hope see.’
Grateful for the lists.
Grateful for the people on the list.
Grateful for steel trap memory.
Grateful I am not jaded.
Grateful my son is not jaded.
Grateful to be able to honor my son’s choices
Grateful to be able to protect my son.
Grateful for concepts carved from the stone of life.