Whenever I find myself in the midst of a disability maelstrom, it's not uncommon for me to lose my way.
Of late my attitude in regards to coming back into the family's everyday after being separated has been positive but it clings to those puppy dogs and lollipops with duct tape, Super 77 and Velcro. Tenuous is a good word choice for everyday happenings.
No way to see beyond the stormy horizon.
Not because I don't want to see a bright beach with crystal waters to sail into. Rather the sea is in a state of such unrest the waves obscure what lies ahead.
Lilly's pulling out his sailing ship analogies again. What happened?
There is a reality that started to come into focus for me. About my life. Carter. Jen. Bennett. Of course Bennett will always be at the epicenter of what can only be described as a jarring set of unknowns, unsettling problems that some days appear fixable and other days...do not.
What must it be like to be at sea and become aware that your ship has a tear deep in its underbelly? A rip circumstances will not allow you to repair, EVER. While the splintered wood hasn't resulted in the outright sinking, while you can still get from one piece of land to another, each time you take her out the weight of the damage pulls her, pulls you, deeper into murky depths.
To remain safely on land. To never venture out. Is to accept a kind of...
I began writing that several months ago.
It is one of those posts that got started then suffered from my classic 'FUGGIT!' Syndrome. Got too emotional over it. Stepped away. Didn't feel like writing anymore about something that was so negative. Imagine that. Especially since the blog used to be pepper sprayed with negativity ALL THE TIME.
Deep down? I'm not so much about that. Not anymore.
I still get down don't get me wrong. I have Depression, Anxiety, PTSD, ABC & 123 girl, you don't get to walk away from that. Admittedly I also get a cheap thrill from the act of kicking its ass as often as I can, when I can. And that is more often than not these past few months.
Mainly in matters relating to my second son and his disabilities.
When I began to write that post, Bennett had just received the results of a Neuro-Psych Evaluation. It was objective, something I can never be. It was also FUCKING BRUTAL, as you parents in the World O' Special Needs know they can be.
For those unfamiliar with what a Neuropsychological Evaluation is (and good for you may you never EVER have to read one) here is a very ham-handed attempt at an explanation. After a brain injury, there are going to be issues with behavior, cognitive function and other things that the brain regulates. The evaluations serve to let caregivers, usually parents, know where an individual is in their overall development.
Each person has different needs and so testing is different for every individual, so if needed you can go beyond behavior and cognitive into sensory, visual, language, motor, etc.
Not a fantastic summary, but it will have to do.
Back to Bennett's Evaluation.
I'm reading this thing, and I just felt like I was getting bitch-slapped around the room. Understand this means Bennett was getting beaten up in the eval, and by extension I was taking his blows. That is my par for the course with ALL of these mufuggin, um, necessary and informative tests and quarterly reviews and the like.
So it's not like I wasn't steeling myself, because I was. But when I got to the section that re-categorized him by percentage I allowed my guard to drop and found myself getting sent flying across the room, as if James T Kirk himself had hit me in the chest with a leaping leg kick.
Bennett was placed at the bottom one percent of the population.
It was really less than one percent, expressed thusly… >1%. That was an across the board summary of his overall cognitive abilities. In the old days, you would call that severe mental retardation. Actually, not so old. Nationwide Children's Hospital, where he receives Psychiatric treatment, still refers to one part of his diagnosis this way.
Today, it's supposed to be called Intellectual Disability. OK. Gotcha. Maybe some other post.
The point of this one is the ninety-nine dot-whatever-whatever percentage points I could not stop thinking about. It was consuming me. Remember the movie with Gladiator where he played some Math genius and the numbers and spy codes and junk would light up and move around the cool hat of Bud Brigman from The Abyss? What the hell was that movie called? My memory sucks. A Beautiful Mind. That's it. Thanks Internet! (Heh…irony.)
I would look at Bennett and see floating, well lit CGI percentage points floating around him and wonder how I screwed him out of this one or that one. I mean, had to be something I wasn't doing, right? I'm his father after all. It's my job to protect him.
An unfortunate combo of maleness, Catholic guilt, and me just being me.
This month? It will be six years since the surgery that removed the tumor from Bennett's head, consequently killing the Infantile Spasms (seizures) that were devastating his developing brain.
Six years. Wow.
I spent the first year and a half after the surgery obsessed with getting him to say "Dadda" again. It's sad really, when you go back and watch video. I was so NOT living in those moments. Fighting so hard, so desperately, to place a square kid into a round hole.
I had that Garage mentality. I took Bennett to the shop. They went under the hood. Cleaned out the bad stuff, made sure all the wires were connected like they shoulda been, even vacuumed the interior. After that, with some therapy and some breaking in, he was supposed to return to normal.
Yes I know, that's just another way of stating that Denial is a beautiful thing. Was I still that same man, rebounding from one stage of grief to the next?
The numbers. Less than a percent. For three days I was uselessly dwelling in a pool of nothing. Then I started to try and sort it all out by writing.
Almost as quickly as it began, my unrest began to fade. I say quickly because in my world of emotional processing, three days is The Flash level speed. Not long after I walked away from that post (WAY up at the top there) I realized when I looked at Bennett I didn't see an evaluation that said he only knew the letter A and B and sometimes C after trying for almost 2 and a half years.
Instead I saw a boy who loved to sing the ABC song by rote memory, not really understanding it as an "alphabet" but as a game that ended with Daddy clapping and him jumping up and down. SATURATED WITH JOY.
Fine by me.
I didn't see a Bennett as, according to the evaluation, a kid who could not engage in peer group play or other kinds of typical play behavior for kids in his age and peer group group or even younger and who preferred to spin objects or play in water.
Instead I think about how often he says "Daddy baseball?" when he wants me to play with him outside with the wiffle ball and bat and electronic pitcher. Sure I'm helping him hit the ball, but WHO CARES??? When he runs the imaginary bases as I hoot "RUN BENNETT RUN!!!" and he comes to home plate he is LAUGHING AND GRINNING FROM EAR TO EAR.
It's completely fine by me.
More and more I wasn't seeing Bennett as, according to the evaluation, a boy who would not engage socially with peers unless prompted or who had issues with adverse aggressive behavior.
Instead I saw those things as our problem, not his. It would be up to us to guide him, to prompt him if he needed it, to manage some kind of behavior plan. But I always knew that.
Besides, he engages when he wants to. I know how great it is, how AWESOME it feels, when he grabs me by the hand and says "Daddy sit." when it is nearing the end of his day. And we watch YouTube videos of the two of us together that HE CHOOSES and he says "You funny Bennett you funny you know dat?" Which is something I've often said to him. And he laughs and giggles and LAYS HIS HEAD ON THE PILLOW ON MY LAP SO HE CAN GO TO SLEEP.
You bet your ass that is ninety-nine-dot-whatever-whatever-percentage-points fine by me.
It had become easier, so much easier, to see Bennett as just…Bennett. And not to just say it.
To feel it.
To KNOW it.
To believe it.
Something had changed. Had an idea what it was.
There aren't many easy answers on this journey. No single manual or set of guidelines that tells us how to do the monumental things asked of us as parents. There is no secret formula. If there were then I'm sure someone would have figured out some way to bottle it, write a book about it and make a fortune long ago while simultaneously giving free samples to everyone who really needed it.
The truth is that I think all of us, this breed that's been labeled Special Needs Dads, has to reach each milestone, overcome every obstacle, engineer each breakthrough at an individualized pace, according to personal preference, capabilities and the circumstances and needs of the children we care for.
Everybody's body type is different I get that. So there can be no one size fits all solution, even though our gender often prefers it this way.
If there was one key for me, one bit of information I would try to pass along to my younger self as he was just getting started, it might be what I learned through this latest of experiences.
Be the fighter you are, but don't fight the grieving process. Mourn the loss of your normal life, it's OK. Don't feel bad about it. It isn't your fault. Then run, do not walk, to the Acceptance stage as fast as you possibly can.
When you're there, take a look at your child. With fresh, new eyes.
Then start building something.
A solution for a new life that takes into account the measurement of the wonders your child is to you, not who your child isn't. The measurement of who you are, and the amazing things you are going to find yourself capable of.
You may find it all adds up to a total package of percentage points that the both of you have. Last I checked, that's probably around 199 more than we need.