Thursday, August 19, 2010

Black & White

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 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.

Watching TV.

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


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.

Cognitive/Problem Solving

Skills observed/reported:

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.


Skills observed/reported:

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
Skills observed/reported:

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.

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.

Fine Motor:

Skills observed/reported:

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.

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.


Skills observed/reported:

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.

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.

Skills observed/reported:

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:






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.



  1. I have not commented in a long time...but I do still follow you. To see how Bennett is doing. Your post today left me in tears for you...we share the common thread of IS with our children.

    I do not want you to think for one minute that I have the answers to everything...why our children suffer...because some days I struggle with it myself just as you said.

    I do know this...God didn't leave...He's still there, He's always there, He'll be there until you are ready to come to Him.

    I am completely broken without Him. There is no way that I can watch my Kate seize day in and day out, have allergic reaction to medication after medication, stop breathing...etc. without knowing that HE is the author of our families story and although He did not cause this (we live in a fallen world) He is writing a beautiful story out of her life.

    Know that you are being prayed for as you are searching for the place you need to be.

  2. As I read this, all I could think of was my therapist's voice telling me to stop hanging on to all the garbage from the past and to start moving on today, in that moment. At some point it becomes a comfortable place to be -- miserable and comfortable -- but the hard work of living in the moment and allowing people to love us depsite our guilt is worth it.

    I really hope and pray that you find peace in your life.

    Bennett is doing a lot of amazing things that, if he were still having spasms, he may not be doing otherwise. Running, jumping, and kicking a ball? That's pretty exciting. An 8-piece puzzle? That's great! Seriously. I work with SN kids and use ABA and that's great progress.

    I also have been wanting to tell you about this medication I've started taking. It's not an antidepressant, but it's supposed to help your antidepressant work better. It's called Deplin.

  3. I think you are right in that being honest, getting it all out there, can only help in reshaping your perspective. I often think I was very lucky that Julia was my firstborn because I had no clue how behind she was for the longest time, everything she did was amazing and even more so because of her seizure history.

    I have no answers, but I hope you get to a more peaceful place soon.

  4. I am really sorry to hear about how hard things have been. I have no advise on your marriage...hell I have never even been married, but I have been depressed and manic.

    Is there anyone you can talk to? A therapist, friend, pastor, someone? Maybe try another med change? I realize these are things you have thought of...if it was that easy, you would have done it. I know it is not, but try again. For whatever its worth, I think you owe it to yourself, if not your family to try again. Anything you can think of.

    I have been in this kind of fog before. EVERYTHING is distorted. Its so fucked up that I don't see how you could fix it on your own. No matter how smart you are. Maybe you are already changing meds and talking to someone...maybe you need to see someone else then.

    I'm sorry, I know I don't know you very well and vise versa but I really feel like I have been in some kind of world like the one you are in now. The one where you forget what it was like to really be ok until you are ok again. I really hope that something happens to help you...that you can find some sort of light of the end of this long tunnel. Wish there was something I could do to help...


  5. Well.........Awesome. That's why I love you...(in a guy way of course).

    Thank you for posting know I needed to hear what you had to say about your spirit and about your faith.

    I ditto 100% "Benton Family's" about God not leaving. I know, I know, you are zoning favorite, favorite story that Jesus told about his Dad is the one about the old poverty striken woman who had a few coins and lost one. It was all she had so she searched and searched and even called her neighbors to search for the coin she lost. And when she found it, she rejoiced...threw a big party!

    I am a coin that she had in her hand, YOU are a coin that she lost. The lost coin gets the search, and the rejoicing when it is found.......hey, maybe that makes me a neighbor who helps in the search.

    Ok...done...Bennett is here for a reason...and you get to be his father.

    I know you.

    Great post.

  6. Well, I got two really messed up kids, but I wouldn't kill to be in your shoes. The devil I know is the one I want, I learned a long time ago you can never really know what someone else has. Even if they tell you.

    As for spirituality, if there is a god (and which of us in this freaking foxhole really is an atheist?) I can't believe the S/He is all knowing and all powerful and micromanages enough that that S/He really hears each of our prayers and acts on them. Hell, would any of us have fucked up kids if God really heard our prayers and gave a shit? And who messed them up in the first place?

    I debated long and hard about posting the evaluation the psych did of Pearlsky for guardianship. Simply, it is devastating. More than all the others, and they are all incredibly difficult. Maybe I will, but first I have to glue the pieces together. (mine and the documents)

    As for life, here's one to try. Starting now, everyday do something, at least (if only) one thing good for your wife, one thing for Bennett, ditto for the rest, and one thing for yourself. Could be real small, or big. Don't point it out, just do it, force yourself. Maybe a kiss, maybe a complement, maybe a video game, an attempt, something. Slip it in. Everyday.

    Bet ya God will notice.

    BTW, I think God is a big pregnant lady who sits around complaining how her back hurts and she has to pee. But She takes copious notes.

  7. It's useless for me to give advice -- I know that -- but what resonates the most for me in this post is your ability (and, I think, mine) to hold two very contrary thoughts at once. I'm struck, too, by your stuck-ness, recognizing it and seeing its familiarity. For me, when I get like this, when I've been like this, what gets me though is repeating a sort of mantra -- not about hope and feel-good stuff, not about God and blessings and all that jazz -- but a mantra, really of impermanence. That nothing, absolutely nothing, stays the same and everything changes. It means that when times are good, when a good day happens, a moment is clear, well, I'm grateful for that moment because it's not going to last. And when things are horrible I'm not going to despair because that's going to change as well.

    But here I am blabbing away. The only other thing I'll leave you with is mindfulness meditation for stress. Look it up and find some place to learn it. It will save you.

    Blessings and love and strength and courage to you, Ken.

  8. The part of this,that I keep coming back to, is that you do continually try to find the answers.You do continually try to get to the better place.You do try and look for the silver lining and be that beacon of hope.YOU HAVE NOT GIVEN UP.Otherwise,we wouldn't be hearing from you and because of that,I do know you have faith and I do know you have hope and you do know He is out there.

    We come here and lend what ever it is we have to give,despite the fact that we all have "stuff" and so do not have it all figured out,but we come nonetheless because most of us get it.We just might be dwelling in a different place at any given moment.

    So for today,a group of virtual strangers lift you with words and wisdom and good vibes and mantras and prayers.We give what we can give because that is what we are called to do.As parents and wives and husbands and friends,as human beings.

    Sending peace and prayers today Ken.

  9. I followed you over from Ellen's.

    Sometimes we don't feel like being "positive." That doesn't mean we have to be negative.

    What we have to be is STRONG. That's not always easy. Someone has to do it, though.

    That's why I love that Bruce Lee quote--Be Water. Adjust to your surroundings, take your shape, your stance, your perspective from what's around you, what you're dealing with. Don't fight it--adapt to it.

    That's how I manage. That and a lot of help from family. At the end of the day we have to take the path that works for us.

  10. Hi Ken,
    It's interesting to get to see a little more deeply in that head of yours. I have no advice for you. Wish I knew how to help. I am the opposite of you I think. I am probably too positive given the current status of Maddie. But its the only way I know how to be.

    Thanks for always being so open and honest. Hoping that you find a way forward soon.

  11. No words of wisdom from me. I just wanted to let you know that I am still here...thinking about you, caring about you and hoping the best for you and your family.

  12. completely out of the blue, and probably wrong, but I really related to your feelings that you are becoming a hindrance to those you love rather than a help. This is not to say that I believe it to be true. Rather, I relate to that because in the past I have often felt this way, or rationalized myself into thinking this way. This was, 100% of the time, a semi-conscious preparation to leave said loved ones. Simply put, I tend to talk myself into believing I'm no good for someone so that I can justify running away.

    I've regretted it later, every time.

  13. Benton Family:
    The problem was never that God left. The problem was that I left God. I don’t know if I will ever go back. Who knows? This whole thing some would argue is my punishment for that. But I do not believe that, I do not think it works that way.

    the other lion:
    I’m glad that is all great progress coming from someone with an inner working knowledge of ABA. Means a lot. I do recognize how far he has come. I had a sort of ‘awakening’ over the weekend about it as a matter of fact. I think what I needed to do the most was wroite this post. Once I got that part of it off my chest, I was able to view things a bit differently. Let’s hope it isn’t too late. Cause it might be.

    I have a shrink appt with a new guy Monday. I’ll ask about the Deplin. I’ll have to call it Led Deplin though. :P

    Thanks, I appreciate that.

    KC's Mama:
    I do have someone I am supposed to see on Monday. A psychiatrist. That’s Step #1. I’ve hd the appointment scheduled for three months. Took my physician’s intervention to even get in. Had been trying before to get an appointment but never was able to. Guess lots of people are more depressed these days because of the economy and state of things overall.

    Dora's Daddy:
    Do I? I hope so. I’d like to be able to be that for Bennett, and a good one.

    Single Dad / Disabled Daughter:
    I love your advice about the one thing every day. Actually been following it since Friday. I have felt much better about it, but no one else has really noticed and I think it is not the right thing to do to ‘point out’ when I do something good, rather just do it for the sake of doing it.

    Looking at it as impermanent is a great way to try to be. I definitely am trying to apply that to my thinking. Especially now.

    Zoey's Mom:
    What you said is super important to me and means a great deal. I don’t think I have given up either. I am still trying, I am still fighting and I am still trying to figure things out, and I do take great solace in that. I’ve started to come to terms with some things, and it’s a good start.

    Fuck off, SmamBot.

    Cool. I like Ellen’s blog. She’s got a great slant. I’d never heard the Bruce Lee quote before. From now on, just call me Aquaman.

    It’s scary in my noggin’ isn’t it? Well, You know more than most about me so you know how tough things have become. Here’s to hoping that I can somehow learn to start making lemonade.

    Sophie's Story by Elaine:
    Glad you are still here

    Stryder Wolfe:
    Thanks for accepting my Friend Request on XBL. As for your theory, it is an interesting one. Perhaps I was preparing myself for what I thought might be inevitable. I can’t know for sure. All I know is that deep down I do NOT want to lose my family, no matter what. I am more convinced now than ever before about that. But I do understand exactly what you mean.

  14. I am very late in reading and commenting on this....So knowing you, things have improved some since this post...

    It has been my experience that I wax and wane...I'm up and I'm down...When I am down, I have to FORCE my thick brain to remember that it always does get a better, though not as good as I want...

    I love that you put your emotions out there and just purge them...I do that regularly with one specific girlfriend...Not so much in writing, though, as I don't have the capability to find the word and express it quite like you do...(And to think I was an English major!!! Ha!)

    Bennett is really making some gains...I am amazed at the things he is already doing!!! And I know you see them...And I know you appreciate it..You just want more...You ALWAYS want more...It seems that you have Bennett attending a good facility...What a blessing! Did I ever tell you that, back in the 90s, after a routine 3 year evaluation, they TERMINATED Colby from his school? Because the testing showed him functioning in some areas as "profound"....Talk about a kick in the gut!!! He's TOO DISABLED FOR A SCHOLL FOR THE DISABLED??? Holding my son's disabilities AGAINST him??? Talk about discrimination!! I ended up spending 6 months fighting the school and finally had to go to the Governor to keep him there...You do what you have to do....I's CRAZY sometimes...

    And that is exactly what YOU have been doing for your family...What you HAVE to do....Things will ebb and flow....But you can survive it...If I can do it for so many years, I KNOW you can....


    (Hope I don't sound too "preachy"...I don't mean to be!!!)


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