THE BILLY PROJECT
THE PARENTS
This mother describes her experience with her sons disability...
I knew it was going to be hard to find anyone who was willing to talk about it. Especially to me. Someone who has zero experience with childhood disability, nonetheless raising a child. But as I started to talk to Amy, a CST Interventionist, she spoke with such a sympathetic heart toward parents with disabled children. I asked her, "What is your personal experience with childhood disability?", and she answered...
"I remember this day he had been in a special education, preschool at three. I went to the teacher and I said "so is Zach, is he ready for the other preschool room?" And she looked at me, what are you talking about? And I said, well, you know, he's been here a month, so have you guys fixed whatever's wrong with him and he's ready to go into the preschool? I remember the look on her face like, Oh my God. Deer in the headlights look, and I clearly did not understand that he would, that he had not been diagnosed as having fragile X syndrome, but it was very apparent to everyone else that he had cognitive disabilities. It was not apparent to me. If I go back and look through the paperwork, starting with all his evaluations when he was two years old until he was diagnosed with fragile exit five it was very clear that there were significant cognitive disabilities. I could not have said that. I had no idea at the time. I'm sure that they told me it was clear in the paperwork that I had been told. I did not hear it…
The doctor called me at home on the phone and told me and I said, they asked fragile X. And I said, what's that? And he said, well, it's the leading cause of mental retardation next to down syndrome. And that was the first time that I really heard those words. I pretty much locked myself in the room and cried for three days. I didn't eat and do anything cause I just, it finally hit me and it was just really, really, really hard... I ended up being a single parent within six months of that, you know, and trying to raise two boys, one of them with a severe disability was a really, really hard thing.
I didn't have a lot of support. It was a long, long… it's still a long road. You know, he's 36. He lives at home and right now he's not working, he's not getting a lot of support. And I'm trying to work and I, you know, he's a little bit easier to deal with than a second grader jumping all over the place. But unless I keep him busy or going, he's on the couch snoring. So I'm trying to get him to do puzzles and do things in between working. But it's, it's not easy, you know. Each stage of life brings its own challenges and there's always meetings. There'll be another meeting here pretty soon with his DD caseworker where I talk about supports and services. There was a whole period there when I would go to IEP meetings, when I was in my anger stage, when I would just be angry with everyone.
And I look back on that now and have to give myself some grace because I used to work with groups of parents and I would tell them that during that stage I might as well have gone to the IEP meetings wearing a flak jacket because I was just mad. My mad came leaking out on everyone else. But I wasn't mad at them. I was angry at the situation and I had to go through that anger stage and accept why me? Why my child? And that's a hard place for parents and it comes leaking out on other people. And you have to learn not to personalize. And it's hard on teachers. Sometimes they leave crying like, why are they so, why are they so nasty to me? It's not about you, it has nothing to do with you. And it's easier for me to let that go cause I've been there.
If somebody would've said, you were told this, if I hadn't had the paperwork to back it up, I would say “they didn't say that to me. Nobody said that to me. They didn't tell me that”. So I think the point is there's a defense mechanism that the mind has that you only hear and you only process what you were ready to hear. And it is extremely frustrating sometimes for educators when they get into CST meetings that these parents won't listen. Sometimes they can't, they are not ready to hear that there is something wrong with their child. They're not ready to hear that. And no matter how obvious it is to the rest of us, wow, there's something really wrong here. If they cannot process it, it's not going to happen."
"Have you guys fixed whatever's wrong with him and he's ready to go into the preschool?"
This is an example of where the teacher's story of what they see in a student differs from the parent's perception. A classic story and anti-story opposition. The mental model of "fixing children", and seeing issues as fixable behaviors rather than deeply rooted symptoms of disabilities is prominent at the beginning of this story.
But, there is pivotal point of realization that pulls this parent into the same story that the teacher is seeing; paperwork, evaluations and physical evidence. But even with this evidence, it isn't until there is a conversation that the parents is able to see their child in a a new light.
"I pretty much locked myself in the room and cried for three days. I didn't eat and do anything cause I just, it finally hit me and it was just really, really, really hard..."
This testimony that this story provides really reveals the devastation and grieving that a parent has to experience as the first step to acknowledging their child's reality. Up until this point, this parent was expecting a "normal" child's narrative; a story ingrained in the mental model of parenting and what it means to be successful.
"I was angry at the situation and I had to go through that anger stage and accept why me? Why my child?"
No wonder there are so many stories of resistance when it comes to acknowledging your child's disadvantages. It is painful. You have to let go of so many expectations and re-evaluate how you see yourself as a parent. This story has strong rhetorical potential by communicating to CST organizations and teachers what the parents are up against. A strong sense of pathos is imperative in order to create a community of support rather than blame.
Blame is a huge restricting factor when it comes to giving a child support. The finger pointing, guilt, and resistance to giving up expectations are all stages of a type of grief that comes with raising a child with a disability.
But there is a leverage point here.
If all three stories, the parents, teachers and institutions, can communicate their stories to one another without blame, there can be a more cohesive and workable narrative. Sympathy, patience and a balance of responsibility can help create an environment where a narrative is shared within a constructive and supportive community.