I was not originally going to publish this. After I had finished it, I thought that it was, I don't know...too much. Too much of WHAT exactly I can't say simply because I don't really know, but I made the decision to put it back as a Draft with the dozens of other un-published blogs I have written over the last two years.
But then I started reading some blogs of my Brethren and Sistren...and I changed my mind. Call it fate. Call it luck. Call it Karma...but it seemed to me that each step I took through Blogville today made me second guess the decision. Especially you, Ellen, if you happen to read this...you aren't usually so...vulnerable. It reached me in a way I hadn't expected.
It also made me think that maybe...just maybe, hitting PUBLISH was the first step I need to take to get where I need to be.
I think anyone knows what I mean when I say that we, as a species, are very good at reducing our own perception of the severity of things in our own heads. By that I mean that when we think about some aspect of our lives that isn't going like we hoped, we can rationalize and theorize and compartmentalize and minimize. Hell we can also do what I do most of the time.
It's easy AND you can have hours of fun doing it. Until you see something in black and white that makes anyone flying around in a self-induced softened version of reality fall right back down to Earth.
This happens, I believe, much more often in the life of a parent of a child who is in any kind of distress. I say that in that particular way because your child doesn't have to have 'special needs' in order to be in distress. Could be anything. But no matter what it is, while you watch your child suffer you do as much as you can to make the very best of the situation in your own mind or you avoid the truth.
To hope, to be hopeful, to be positive. It's only natural to WANT to be this way, for your kids sake as much as for yours. Not everyone can. It requires work. Hard, hard work.
Unfortunately you will always, without fail, without exception, without warning in most cases, get doses of reality that make being hopeful and being positive that much harder. Might not happen to you often. Maybe it happens to you all the time? Who knows. But sooner or later, it's gonna get to you, no matter how positive you try to be.
Maybe it's a party and you see your child unable to get involved in what the other kids are doing.
Maybe it's a sibling that is actually younger than your disabled child performing tasks and achieving things that your older child still cannot do.
Figuring things out.
Maybe it's a digital video you start watching of your life B.C. (Before Crisis), and you see your child who is now disabled behaving just as you expected or dreamed they always would. That child is gone now though, you know this, but you can sometimes still wonder if it's YOU who has done the most changing, not the other way around. Maybe your child still acts very similarly, but YOU see things with such a negative slant that no matter what you are not going to be able to REALLY see it. See?
For most of us SNP's? It's the EVALUATIONS that often kick us in the ass. (By the way, SNP's are what I am gonna call us all now collectively...Special Needs Parents.)
And it never ends. This is but one EVALUATION I got this month. A second from another source was done, not to mention Bennett's one year follow up appointments that were last week. I did not attend those, but there are reports. Huh? YOU DIDN'T GO TO YOUR SON'S ONE YEAR FOLLOW UP? I know...I have much to talk about, but the blog's been dark for a week for a LOT Of reasons, none of 'em good.
I present to you today one such evaluation of Bennett. Because it can update you just as well as I can on where he is today. I'm X-ing out anything I consider to be too personal to share or names of people who might prefer to remain anonymous.
Child: Bennett Lilly
Parents: Ken and Jennifer Lilly
Date of Assessment: XXXXXXXXX
Chronological Age: 32 Months
Adjusted Age: Undeterminable
Informants: XXXXXXXXXXXXXXXXX, XXXXXXXXXXXXXXXXXXXXX, XXXXXXXXXXXXXXXXXX
Bennett enrolled in XXXXXXXXXXXXX and XXXXXXXXXXXXXX in April of 2009 due to the medically qualifying diagnoses of Infantile Spasms, Hypsarrhythmia, and Cortical Dysplasia. He participated in occupational, physical, and speech therapy from May of 2009 through January of 2010. Since February of 2010 he has continued with physical and occupational therapy at XXXXXXXXXXX in addition to receiving ABA therapy at XXXXXXXXXXXX. In August of 2009 a Temporal Lobectomy was performed to remove the tissue affected by the Cortical Dysplasia and at that time a tumor was removed. Since the surgery no seizures have been evident. Waiver services began in August of 2009.
Bennett was able to put a circle, square and triangle shape into a form board and mom reports he is completing 8 piece puzzles in occupational therapy with some ability to match pictures and do pre-placement skills; he will manipulate a pop-up toy both by pushing open the doors manually and by using the buttons and knobs. Bennett is following simple directions given with gestures; he has recently been going to the toy box and choosing something to play with, but he needs adult interaction and direction to play with toys in a functional way. Without that adult guidance he tends to perseverate [To repeat something insistently or redundantly. I had to look it up myself, don't be embarrassed - Me.], particularly by spinning items on a hard surface.
Bennett is working on increasing the length of time he can focus on a task as well as functional play skills. To encourage him to focus longer, try to minimize the other distractions in the room and keep your body at his eye level, touch his arm to get his attention that way too. Model and even physically guide Bennett in the ways to play with toys functionally.
Bennett is occasionally using some signs to communicate as well as beginning to learn to use the PEC system at school and at home. He is a great imitator of sounds. He uses “ba-ba-ba” to tell others bye-bye when prompted. He uses sounds and gestures to let others know when he is done with a task or doesn’t like something.
Bennett is working on expanding his sounds into more complicated sound patterns and simple words. He is also learning how to use a picture communication system. When giving him picture choices label each item for him. It’s OK to simplify a word into simple sounds (like turning “remote” into “me-mo”) and then as he learns the simple sounds transition into using the full word.
Gross Motor Skills
Bennett moves with a great deal of agility. He runs well and jumps with two feet off the ground and in various directions. He was able to walk across a 6 inch board putting one foot in front of the other with two hands held. He is throwing a ball and kicking a ball and beginning to be able to catch a ball from a short distance on his own.
Suggestions: Bennett is working on building his coordination in movement and his perceptual skills to be able to throw and catch accurately and complete motor tasks like stairs and ride on toys successfully. Safety is a concern in this area. Build a tower of soft blocks in front of Bennett when he is working on riding his scooter and encourage him to push himself forward to knock them down.
Bennett was able to stack two large blocks and attempted to stack a third. He attempted to place plastic pegs into a plastic pegboard but had difficulty in manipulating and placing them. He was using his index finger to push buttons and manipulate levers on a pop-up toy.
Suggestions: Bennett is working on building his skills in perception and coordination. Keep practicing with puzzles, pegs and other toys that involve an in and out function. This builds both functional play and hand eye coordination as well as Bennett’s ability to manipulate objects.
Bennett greeted us at the door, making eye contact and clapping his hands. He is playing ball cooperatively with mom and dad and enjoys rough and tumble play with dad and his big brother. He doesn’t initiate play with others and requires initiation and guidance from an adult.
Suggestions: Bennett is working on building his interactions and bonding with others as well as functional play experiences. Be “Bennett plus one” in your one-on-one times with him. Imitate what he is doing, showing him that his actions and sounds are important, and gradually add another step or sound to what he’s doing.
Bennett can pull his pants down and then back up again. [SORT of. He can't pull them up over his diaper and doesn't understand why his pants won't come all the way up- Me.] He is able to hold a spoon and drink from a sippy cup, he usually chooses to take only one bite or drink on his own. He finger feeds himself. He does not like to have his diaper changed after a bowel movement but is OK otherwise. Bennett is also figuring out how to open doors by turning the knob or handle.
Bennett is working on doing some simple dressing tasks on his own and also on continuously feeding himself throughout an entire meal. Try to catch Bennett as he goes to throw the spoon or cup down and guide his hand to the table, then praise him for putting the cup/spoon/toy down.
Bennett is currently showing delays in cognitive, motor, self-help/adaptive, social, and most notably language skills. He continues to work on developing new skills daily with therapists and at home with his family.
And that's that. Simple really when you get right down to it, isn't it? He's extremely, dramatically behind when it comes to being where other kids his age usually are. Will he catch up? Will he still be like this in a year? Two? I don't know. I wish I did know, but I don't. I wish I could stop caring about that, but I can't. It really shouldn't matter, but it does.
Why did I share this? Because when you read the document take note of the tone of it. Clearly it is written by someone who is able to think objectively but also to act and re-act positively and pro-actively, something I struggle with every single day.
I wanted to share the document because my attitude, my disconnect, my negativity is THE thing that is destroying me from the inside out and in the process I'm getting dangerously close to destroying my family with it too.
What is perplexing is that I am a (fairly) smart person.
I have some intelligence and understanding of human nature. Hell, there have been times, if you can actually believe it, that others have come to ME for Life Advice. ME. For advice on how to manage some aspect of their life? Absolutely true I tell you. I wasn't always the mess I am today.
Because of my intelligence I see, I know, I recognize on a logical and cognitive level that:
THINGS ARE NOT AS BAD AS I BELIEVE THEY ARE.
THINGS SEEM SO BAD ONLY BECAUSE OF HOW I AM PERCEIVING THE INPUT.
THERE ARE PARENTS READING THIS WHO WOULD KILL TO BE IN MY SHOES.
WE HAVE A LOT TO BE THANKFUL FOR.
I HAVE VALUE EVEN THOUGH I REFUSE TO RECOGNIZE IT.
And yet...knowing those things, and I promise you I do know them on an intellectual level, I can't figure out how to NOT dwell on the future or fixate on what he CANNOT do rather than LIVE for today, be THANKFUL, appreciative and supportive and concentrate on the things that he CAN do. I can't accept someone saying I am a 'Good Father' and must remind them of what I shitty father I actually am. And a worse husband.
By being this way, by being so FUCKING lost, so unwaveringly negative, so unable to cope I am becoming the worst enemy that my wife and two kids could ever hope to have. Hell, I'm causing them more problems than the ACTUAL TANGIBLE DIAGNOSES that Bennett gets labeled with. I am holding them ALL back, I am making their lives much harder, not better. I am, to be blunt, becoming a liability.
Intellectually? I know this and recognize the issues that I have.
Logically?? I could probably draw you a very complete and very interesting diagram about how all the shit in my life before today is connected to everything else today and into tomorrow and where and why all these different things are experienced by me in whichever way I experience them because of how A and B relate to X and Y and so on and so forth.
Spiritually? Would it surprise you to know that I WANT to be the fucking BEACON OF HOPE for people rather than pissing in their cornflakes? Would it surprise you even more if I admitted that I never lost my Faith as I have so often said in the past? I believe in God...I ended our relationship out of anger. The irony here is that I ended my relationship with God years ago because I felt that he was no help whatsoever in my daily life. How could I not expect someone in MY life not to end our relationship for the exact same reason? (See...told ya I wasn't no dummy...)
Emotionally? I feel the distance growing wider and wider between me and, well, let's face it...not just my wife and my immediate family, but everybody else.
I know all these things, am fully aware of all these things, see the daily results of all these things and yet I AM NOT DOING ANYTHING TO CHANGE IT AND I CANNOT FOR THE LIFE OF ME FIGURE OUT WHY.
It makes no sense to me. No sense at all. But the answer has got to be there, somewhere. And I need to find it, and right soon, because if I can't figure it out, if I can't make the connection between where I need to be and where I am right now in my head, I am going to lose everything.
And that'll suck.