A lot has happened but whenever I sit down to write about it, it feels like nothing. So how do you talk about it? Easier to slip under the blanket and pretend the world doesn’t exist than to sort it all out.
I am aware that since moving back in with my parents, I’ve written progressively less. And not just fiction, my blog too. Whenever my writing comes up, it’s dismissed as some impossible long shot.
This last Tuesday, my therapist asked me if I willing to live without my father’s approval. I don’t know. It was easier to ignore that need when it wasn’t present every day. It’s another thing to work on. I know if it’s not the writing, it will be something else – anything else – that he doesn’t approve of.
I remember reading an article on The Mighty a few years back. It described what it’s like growing up with a treatment non-compliant Bipolar parent. I can’t even remember the title of it, but one line still haunts me today:
“If I could understand it, I would be it.”
My father isn’t diagnosed with Bipolar, but he did have a problem with alcohol right up until I was about 15 or 16. There was much in that article I was able to relate to.
That article solidified my commitment to my stability and Bipolar management as well. I refuse to be that parent in that article. I refuse to be that parent my father was while drunk. And I sure as hell don’t want my children to understand the pain and sorrow behind that one line.
So yesterday, for whatever reason, my dad brought up the subject of his plans of the future to me. Two things became crystal clear for me.
The first thing being that Dad has finally come to terms with Tuxedo Cat’s diagnosis. And the effort that I’ve put in as a parent. My nephew has been diagnosed with Autism. And he is NOT receiving therapy, is NOT making progress, and is about 4 years old now.
Turns out my sister-in-law’s best friend used to work as a community integration worker. (Like where the fuck was this guy when the first of us got diagnosed?! Seriously would have made my life easier.) He pulled strings for her. Got her son bumped up to the top of the waiting list at one of the only two preschools in Maine for children with Autism. She was a no show four times in a row.
I had to wait 6 months to get my son in at the other school – never heard from the one she got an appointment with. That’s how long their waiting list is. It’s crazy. She had an opportunity handed to her on a silver platter and she blew it. My parents are livid. Her best friend is livid. My brother is… patient. I know he’s upset, but he’s not expressing it.
So here I am expressing my dismay, and thinly veiled jealousy, to him about how long it had taken me to get my son into the other school and he was shocked. He had met Tuxedo Cat and said he wouldn’t have guessed Autism. I told him if he had a chance to spend more time with him, it would be more obvious.
But this guy was like, “He looked me in the eye, and said hello. Asked me my name.” I explained he has eye contact because I taught him sign language (signed English to be specific, not ASL – which the public school forced him to drop). And I told him what the other boys are diagnosed with, and he said to me – in front of my dad – that it’s obvious I’ve done right by my boys.
The irritating thing here is, at this point my dad says he’s never had anything against what I’ve done with my boys. Really?!
And while it does make me feel good to hear that, I can’t take all the credit. That goes to all the dedicated, hard working people that believe in what they do for these kids. They went the extra mile to connect with Tuxedo Cat and figure out what he even wanted to talk about to make speech therapy work for him. Those people passed that info along to build trust to get him to be willing to do his school work. Now this kid takes the initiative. He signs himself up for the Special Olympics team. He taught himself the basics of piano and the music teacher jumped at the opportunity to work with him one on one.
The moment I decided to homeschool Scholar Owl, the special ed staff have been very supportive. Have you checked out this website? Or have you heard of this textbook series? Have you tried this? That kind of thing. They don’t have to do that. Maine also has a state wide homeschool organization dedicated to helping families do it right.
We’re still trying to figure out what Little Bear needs to thrive, but the team he has now is very motivated to make it happen despite being overwhelmed. Unfortunately, there isn’t a lot of research based programs set up for what he has. With Little Bear, we’re flying blind and borrowing a lot from the Autism, ADHD, and Dyslexia programs to address his academic challenges.
It really does take a village to raise a child.
And the need for that village doesn’t go away once you reach adulthood.
Because the other thing that became crystal clear to me while talking to my dad yesterday is that he sees me in the same light as I see Tuxedo Cat. And I think it’s something that went along the same lines as it has with Tuxedo Cat in his head. First denial (they grow out of it), but then acceptance (oh… I guess they really don’t). There were some things said about our growing up that makes me think that.
Like, I know as a kid I went through a lot of the same testing that Tuxedo Cat did. Both my parents confirm that. But what surprised me is Dad said something about Mom never taking any of us in for a neuropsych. I told him that I didn’t think that was available for kids back then. He said it was because kids back then were being diagnosed with Autism and MR.
So the first thing to all this is, hindsight is 20/20. It’s easy for a parent to tell themselves, “I should have done this for my kid.” We can kill ourselves with guilt alone riding the coat tails of hindsight if we’re not careful. It’s what parents do.
The other thing is the bitter dynamic between my parents. There is a lot of blame and shame going on between them. A lot of resentment. I don’t know where it stems from or how it started. I know it’s been there my entire life. And it seems like any time there is an opportunity to point the finger at the other, the shot will be taken.
But what sealed the deal, is how my dad stated that while he doesn’t understand how Bipolar works, he does know that it’s like Diabetes. It’s something that doesn’t go away and it’s something that has to be managed through out the day, every day. It’s something that affects the brain. And that I was damn lucky that my post-partum psychosis was mild all things considered. That things could have been much worse.
Is he saying all this due to the reality of my grandmother’s condition? His mother that lives next door to us. She’s in her 90’s now. She has Lewy Body Dementia, so it’s not related to Bipolar at all, but it can and does cause psychotic symptoms. And she’s getting worse.
So right now he has in his life two people with two different diagnosis that can cause a similar set of symptoms. One is currently in the best case scenario (for now). While the other, from his point of view, is in the worst case. I don’t know what her prognosis is. Everyone seems to have a different opinion.
So his plan is to set things up the same way as it was for him when he inherited the family property. Dad wants a life estate for Tuxedo Cat and me. My baby brother will get the property, with the understanding that he will be our care taker. My brother is also to give the other siblings (my other brother and two sisters) a house lot if they want it. These were the terms that my dad inherited the land. My grandmother and my aunt are living next door – the two people my grandfather were worried about.
My brother has already told me that he’s okay with it. I’m not sure if I’m okay with it. And in the same token, I pray that Tuxedo Cat will never feel the way I feel right now. But then again, he didn’t grow up with the belief that everything was supposedly fine and struggled to figure out why things were never fine. He hasn’t spent half of his adult life as a train wreck. And I believe that as long as he has the right supports in place, he won’t.
And I want those supports to be in place for the other two as well. It’s frustrating to see that my dad doesn’t apply the same concern that he has for Tuxedo Cat and me to Scholar Owl when this child has the same diagnosis as I do. I can kind of understand it for Little Bear since the hospital is taking the “wait and see” approach for the most part. What is it that Scholar Owl is doing different that is signaling to my dad that he is more functional? Or is this yet another case of denial?
At least my dad did agree that my son should also get a neuropsych, to be on the safe side. Especially now as he’s approaching adulthood. Not sure how to make that happen yet.
Dad also brought up me filing for disability again. Three care providers now have mentioned it to me since I’ve been diagnosed. My sister-in-law’s friend said he would help me with the paperwork if I need/want it. They both seem to think it’s a good idea to wait until after my neuropsych is done.
I told Dad how Piggie thinks I can work. He got angry about it. I told him she said writing counts. He then goes into the odds. I realize then it isn’t about me writing that he has an issue with. That’s not the problem at all. Apparently he’s of the opinion that I can write all I want. Just look at Louis L’Amour. He wrote for years and years before he ever got published, and then it was years before he got anywhere. (According to my father, who is an avid fan. Don’t know the truth of the author’s journey, but I have enjoyed more than a few of his books.)
Dad wants the guarantee. Writing fiction is a shit ton of work with the risk of getting nothing from it. I’m beginning to think what he’s trying to tell me is, go for the guarantee – whether it’s the disability or the shitty part-time job – and then find time to write. If you then get lucky to hit it big, you can tell the rest of it good-bye. But at least you have the guarantee.
I can’t help but wonder how much of this stems from him giving up his dream of being an architect when he was drafted for the Vietnam War. Does it even matter? The reality is though, he never found time for his dream. Life just got in the way. I’ve seen the blue prints he’s drawn – still draws – by hand.
Perhaps, I’ve always have had his approval and never saw it? Perhaps, he’s been telling me how to get there and never heard it? Perhaps, in all this I know it means allowing life to get in the way?
He said yesterday that I have always been one to never like being told what to do. Even if that was what I had in mind in the first place, I had a tendency to dig my heels in the moment someone said I had to do it. He said I’m not as bad as I used to be. At least now if it’s my plan in the first place, I’ll still do it.
I’m seeing a lot of that in Little Bear now. I understand the desire to be your own master, but time has also taught me the folly of completely abandoning the wisdom of the village.
There is a time and place for everything.
There are times where you must march to your own beat. But there are also times when you need to join the band, and play music together. And a good village allows you to do both. I hope that someday Little Bear will come to understand and appreciate this.
My family has their flaws. They have their strengths too. We are functional in our dysfunctional way. Our collective wisdom has created a symphony like no other.
I’ve decided that once my neuropsych is complete, I will file for disability. I don’t know if I’ll get it, or what comes next. I am placing this into God’s hands.
My goal as a writer was never to be rich and famous. All I ever wanted with my writing was to share my thoughts and ideas. All I ever wanted with life was to live a simple, quiet life. Rich and famous doesn’t give you that.
I’m tired. So very tired of fighting. Of pretending. I’m not normal. Never have been. Never will be. Why am I trying so hard to be something I am not?
Is this what it means to be old? To reach a point where you can look at the world and say, “Fuck it, I’m done pretending for you.” Or is that just some magic personal development stage anyone can reach and any given age? No idea, and does it even matter?
I’m not giving up. I’m letting go. I’m accepting the village that’s always been here for me. This is the family I choose.
I know there will be days when they will piss me off. There will be days when I will piss them off. Will we disagree. Will we fight. We always do. But we always seem to find a way to come to terms. We make amends. We always do. There will also be days where we will rally. We pull together and move mountains. For each other. We always do.
And this is what a village is for.