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Good week

I started this during a rather auspicious time. My son and I are both going through a bit of a rough patch. Well frankly, it's more likely that I was going through a rough patch and he was picking up and getting my stress. That's what WS kids do. They feel everything. It is a magical gift that I wouldn't wish upon anyone. He shouldn't have to feel my pain. 

So we've actually had an wonderful week. He has been kind and brave and a lot of fun. He's listened when I've needed Jim to do so. I've done a better job of recognizing earlier how my stresses and frustrations affect him so I can adjust my vocal tone and calm things down. 

He makes me so happy and proud. He's literally the best thing I will ever do in my life.  

Next up, I just did one of the scariest things a parent of a child with special needs can do: send out birthday invitations to his party. He's got friends, but it's always a fear in my mind: will anyone come to his birthday? Ugh.  

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This one is tough. Tonight I became very frustrated at my son for not focusing while trying to help him with homework. He’s learning about calendars and so I was simply trying to get him to look at the calendar and tell me how many days October had as my pencil rested pointing at the “31.” He decided he’d rather just change the subject, or play with a nearby toy, or take wild guesses without even looking at the paper. I grew quite upset and told him so and that he needed to please focus and do the work.

This goes back to the “fun dad” crap. I think he just believes I’m a fun play thing that isn’t to be taken seriously or respected. Even though I help him with his homework every night - and work very hard to give him positive reinforcement and assistance without doing the work for him - I think it may reinforce to him that I’m some sort of servant. 

Real quick - he doesn’t have to do the homework. His teacher sends it home with him because she wants us to know what they’re working on and to give us the option. Our view is if the other kids are expected to do it, we should make the same effort. It also helps to establish routines and expectations. He doesn’t have many chores around the house yet, so he can at least give us a little bit of time for schoolwork. 

So I became more and more frustrated. Recognizing this, I excused myself to calm down and when he decided to focus and do his homework as is expected of him, he could let me know. A few minutes later we tried again, this time with (what I hoped) were less distractions.

I should mention we were at his Grandma’s for dinner. I thought we could just crank it out after dinner leaving us more time to play. 

Still on the same question about October and 31 days, my son informed me that October had only 1 day. I thought he was joking. He wasn’t and he grew more and more defiant with me as I told him that he should try again. 

At this point I said we should say our goodbyes, go home, and try again in our familiar setting. I was really worked up at this point. I was trying to keep my voice steady but firm, but I was in the red. That’s when my wife said, “Oh calm down.”  

I threw her coat down on the floor. 

“I don’t need this shit from you and I don’t need it from him.” 

I didn’t yell, but I was full on pissed off.

And I left the house to wait by the car.

So that went well. 

I calmed down.

So did Ben. 

My wife did too though we rode home in silence. 

Things were pretty well diffused by the time the garage door closed. We went inside. Started to joke around. We went up to the kitchen table and got the homework out. Tried again and I came at the problem from a different angle and he got it. Rest of the homework went great. Lickety split. 

Bath time. Jammies. Snuggles. Sleep. All good. 

Reluctantly, my wife told me what happened after I excused myself from Grandma’s house:

Ben came to her crying. Very very upset. He didn’t understand why Dad was so mad. My wife explained that “Dad was frustrated that you weren’t focusing on homework and not listening to him when he was trying to help.” 

”When he gets mad like that, I don’t know if he loves me anymore.” 

Bennett feels everything so intensely. It’s part of Williams Syndrome. They’re true empaths. They pick up on slight changes in moods and emotions. Since Ben is only 6, he can’t distinguish the complexity of some emotions, but he sure can feel the intensity of them. 

“I don’t know if he loves me anymore.” 

Could there be a more concrete example of how much I have failed as a dad?

My son should never feel for one second that I don’t love him. I’ve never even jokingly raised a hand to him. I’ve always tried my best to be there for him to show him the beauty and joy in this otherwise shitty world. But I’m a midwestern, Lutheran-raised, Scandinavian/German guy. I tend to bottle everything up until it bursts. It’s not an excuse, it’s just illustrative of a pattern in my behavior that I hear about in others.

I think when I get really boiled I’m like Josh Lyman in the West Wing. (<— link) I don’t fully grasp the energy I put out when I’m upset and how I seem to the people on the outside. 

Clearly I have to do better, specifically as it pertains to my son. 

For now, whether I accept it or not, the fact is I’m a failure as Ben’s dad. 

I’m trying so damn hard and I don’t seem to be improving even a tiny bit.

Shit. 

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Fun Dad

I do not want to be the “fun dad.”

That is not to say that I don’t want to have fun with my son. Far from it. I love hanging out with him and going places. I’m demonstrably affectionate with him and take every chance I get to teach him about the world - just like my dad. 

And I feel that because I’m affectionate and engaging, when I need to reprimand or punish my son, it should carry more weight. I’m trying to be in the trenches with him for the good and bad as he learns is place in the world, so I thought my guidance, even when sternly given, would be followed.

But others just see me as the “fun dad.” They don’t see the look of betrayal I get when I tell Ben “no.” They don’t see that my involvement in his life has made me tantamount to a prop for his happiness.  

Maybe for Ben’s brain, it can only be either/or. Either your the person who runs, wrestles, and goofs around with him, or your the more distant judge.  

I refuse to be the distant judge. 

Can I be Harry Anderson on Night Court? The “fun judge?” 

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Yeah...so...

I promise I didn't start this blog to bitch and complain, but this was a shitty day. 

Let's get into it:  

I made a lot of mistakes today. I don't think I was a very good dad. I also don't do well at giving myself slack, so that's why I'm writing tonight: hopefully this will be a bit of a purge. 

Day was fine. Ben went to school...wait. I need to back up a bit. For the first time in a very long time (maybe even the first this school year), we got word that Ben was very disrespectful to one of his teachers at school. Sure he has outbursts and gets spoken to or needs "a reset," but it's never been relayed to us with this kind of seriousness. We also got his report card. 

Sidebar: one nice thing about having a kid with special needs is report cards mean something completely different than they did when I was a kid. They truly are a report of how he's doing in certain areas with the foreknowledge that expectations for him are not the same as a typical kid. I can look at it for what it is and track improvement instead of seeing something more akin to an "end result." 

And we saw improvement. Lots of it. It was really great to see his card and the accompanying IEP update state what we suspected: he's been working his butt off and making big improvements. There was only one area where his grade worsened: respect toward others. 

He's an only kid with developmental delays and a helicopter dad. 

What did I do?  

Or more accurately: what didn't I do? 

I've been really struggling with his tantrums. He's firmly in the "center of the universe" phase and if he's told "no," the result is screaming and crying. So what does any self-respecting person do to a screaming 6 year old? Why rationalize and use sarcasm, of course. 

"Do you really think screaming at me is going to get me to change my mind?" 

"I know your life is so hard what with your iPad and someone taking you someplace cool literally everyday-even-though-we're-tired-and-just-want-to-play-at-home." 

As John Oliver would say, "Cool." 

Mistake 1 came at Toys R Us. After touring an auto dealership (he's currently into cars), I explained that I needed to swing by Toys R Us to check on the price and availability of a new booster seat for him - and, yes, we would be able to look at some toys. I was hoping that the impending closure of all the Toys R Us' would mean that they'd already have clearance prices (nope, not yet). So as we proceed to look at the toys, we come across a particular toy that Ben has coveted for long time. To be honest, we both have been wanting it: a talking D-Structs. 

Oh? Don't know that one, you say? Look up Dinotrux on Netflix and behold the awesomeness of different kinds of part-trucks/part-dinosaurs learning to live and work together despite the nefarious machinations of the grouchy, scheming D-Structs. Yeah. I know. It kicks ass.

Toys for this show are becoming rare. You've never heard of the show unless you're related to my son, so you can imagine there's not a lot of demand for die casts and talking action figures. 

But there it was. 

To this point, Ben had had the incident at school, one meltdown at me when it was time to leave the auto dealership, and the mark on his report card. Teachable moment: don't get him the toy. Actions have consequences. 

Nope. Bought that sucker. Ben was over the moon! I was too. I wanted it too. I tried to assuage my guilt by telling him that if we hear of any more incidents at school, this is the first toy taken away. 

So at home, I started dinner and was trying to get the dishes put away and fill the dishwasher with the next load (it was just him and me tonight. My wife was working). Ben comes into the kitchen demanding to watch videos. Demanding. This was new. Usually he asks, and politely too. This was a full on "I want this now!" event.  

Nope-and-oh-by-the-way-get-over-into-time-out. 

Take D-Structs away right? That would've been good, but alas, that was not what happened. Sure he calmed down. He went back to playing nicely with only the occasional question, "Why did you tell me I couldn't watch videos?" Clearly another moment for logic and reasoning: "I'm working in the kitchen and I can't be out there to monitor the videos with you (as you probably know, the algorhythms sometimes pull stuff that isn't appropriate). This was met by what I assume is a 6 year olds acknowledgement of error and understanding of expectations of future behavior: huuuuuuuhhhhhhhh. 

After dinner is homework. Homework is tough and not mandatory for him. His teachers and helpers at school are fantastic and, like I mentioned, the improvement he's shown is fully credit to their hard work and kindness. We try to do the homework so that he feels a routine and realizes the demands that his peers undergo. But it is hard for him. It is almost always math and concepts like symmetry and "how many coins do you need to make 31¢" are hard for kids with WS. So we work at it and he whines the entire time. Most days I can handle it. Today was not one of those days and I'm not a stoic man. Ben has a dad who freely shows his emotions - I mean, it IS what I do for a living.

"Whining will not get you out of homework." "We will be finishing this." "Do I need to take away D-Structs?" And I believe, I would've done it this time. 

"Ben. Your mom and I have seen how hard you've worked and we are very proud of your report card, but that doesn't mean the work is over. School - learning - is always going to hard. It will be harder for you than your friends. You don't learn like they do. But it's important that you work and give the effort to learn because you will have to do things on your own sometimes. We all love you: me, mom, all the grandmas and grandpas, your aunts and uncles, your teachers, your helpers - we all love you and believe in you. If we didn't love you, we would let you give up and not do any of this and not care. But we do care. All of us. But we can't always be there to do things for you. You have to learn so you can do things for yourself...like a first grader." 

I'm sure Ben heard the words, but I don't know what got through. You see, people with WS are so empathetic to the emotions of others, all he saw was his dad was sad and in pain. He just wanted to make me happy. Funny face. Silly noise, All the goofy stuff we do when we're enjoying time together.  

I can't talk my way into his brain. This is something completely new that I am constantly failing to learn. 

Tomorrow I'll attempt to do better. 

 

 

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I've decided to do this thing, this blog, in an effort to get my thoughts in order and to have some sort of record of the craziness of being a dad to a child with Williams Syndrome. I have no clue who will read this - I'm not even sure I care. I just kinda feel compelled to write about it. I'm in a unique situation where my wife is the primary worker and I'm more of a stay at home dad. That's not to say I don't work - I'm an actor. 

"Isn't that the same thing?" I hear you ask. 

Ha. You are very funny, but I didn't choose to write this for your snark. Thank you for trying to inject some levity into my blog at such an early point, but hopefully I'll be providing the funny here.  

I've been really fortunate to be able to make a pretty decent living as an actor. I work pretty frequently and when I do, I make decent money. The problem is it isn't constant. For instance, right now. I'm not working. I did a sexual harassment video a couple weeks ago and I will hopefully book a couple other things in the near future, but I don't have anything on the horizon until May. Once I reach May, I go into rehearsals for a big musical and that will keep me gainfullly employed for several months. Things will become a bit more consistent at that point (income, schedule, routines) but not any easier. I'll be doing shows at night and trying to keep my energy up to be a full time dad during the day.  

Make no mistake, my wife is awesome. She could have her own blog on being a mom with job and a special needs kid, but that's not her thing. Fortunately or unfortunately, it's my thing. I'm going to try to keep this pretty focused on my experience as a dad, but I don't want you thinking that I'm alone in this. Far from it. My wife is a pretty damn good partner to have in life. 

So Williams Syndrome. If you're not familiar (and why would you be - I wasn't) is the deletion of several proteins on the number 7 chromosome. It happens, essentially, at the moment of conception. As your DNA starts to replicate, some parts fall off the number 7. So from that point forward, you have an incomplete DNA strand replicating as you grow. The information on those missing proteins can vary, but the consistent traits of people with WS are distinct facial features, developmental delays, heart and respiratory issues, and an extremely friendly nature. Like really friendly. Like "life of the party" friendly. This friendliness also extends to an acute empathetic nature. 

This has been the most fascinating to me. There is nothing in this world that my son cares about more than other people's happiness. If you are sad, he is sad. If you are happy, no one will celebrate you more than him. If you need something, he will do his darndest to help you. 

So hopefully you'll enjoy some of the stories I intend on sharing. My son makes every day a unique challenge and opportunity for joy. I hope you'll share in some of this joy and gain a little bit of empathy for the challenges.  

For more information about Williams Syndrome, I suggest visiting www.williams-syndrome.org. You are in for a treat. 

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