Sunday, July 10, 2016

Ben's 7th Birthday (and an update)

 I just love these pictures of Ben on his birthday at school!
I don't think he's ever been in school for his birthday so it was fun to let him celebrate with his friends.

They sang Happy Birthday to him and then they all gathered around the table and had popcorn.
Since Ben doesn't eat sugar popcorn is usually his "treat".  He loves it so it works :)

 I love how he's just kind of hangin' out in the above picture.
He kept the hat on for the longest time which surprised us all.

Then we passed out bubble wands to each of his friends...

Opening presents at home...

Telling Abby he wants more presents... (love her face :)

We went out to eat and then picked up donuts for the rest of us on the way home.
He needed something to put candles in so we stuck them in a cinnamon roll.  He doesn't care about the treat, just the candles...

He loves to "blow" them out :)
He needs a lot of help and he almost hyperventilates but he gets a kick out of it.

Throwing the ball up and down the stairs is one of his favorite things to do right now so Matt was kind enough to indulge him on his birthday...

The following Sunday we celebrated Andy's and Ben's birthdays (they are only 2 days apart) at my parents' house.

So I'll try and give a quick update on Ben since it's been a while...
(After I finished this post, I was going back through the blog and realized I actually did do an update on Ben in April so it hasn't been as long as I had previously thought.  I mentioned a lot of the same things that I mention here in this post, but it took a long time to write it so I'm not going to go back and erase :)

As far as we can tell, he's mostly just having tonic clonics (grand mals) right now.
About once a week he will have what we call a cluster...usually they are in his sleep but lately has been having more and more while he's awake which I don't love because he's not as protected as when he's in his bed.
If he has 5-6 within a few hour span we give him his rescue meds and that will stop the cluster.  If he has less than that or they're more spread out we just let it go.  Occasionally, I will drop the ball and we will end up on the weekend and out of meds.  These times are miserable as he will have around 20 in 12 hours or so.  I really don't enjoying riding those out...they are kind of miserable for both of us...mostly Ben.
He will still have some myoclonics a day or two leading up to his cluster but they are no where near what they were before The Diet.
We tried the medical marijuana for about a year and didn't see any noticeable improvement so we stopped giving it to him in January.  We have heard that people can react differently to various strains so we might try another one in the future.

I would say Ben is at about a 18 mos - 2 year old level with his expressive communication skills (Higher with his receptive).
At home, we probably understand about 75-80% of what he tries to tell us even though most of those aren't full words...they are approximations, mostly just vowel sounds.
He also gestures a lot and uses a little bit of sign.  He's dropped a lot of the signs he learned when he was younger as he tries to say the word instead.
The school has provided an iPad with an app much like PECS (picture exchange communication system).  He's had it for several months and hasn't taken to it yet.
I need to work on it with him more at home.
At first, I wasn't excited about having him dependent on a device to communicate, but on the other hand, it would be nice to have a "language" that everyone would understand no matter where he went.

Potty Training
Haven't even gone here yet.
With my typically developing children, potty training brought out the worst in me so I'm downright scared to try it with Ben with his limited understanding and abilities.
Honestly, I have a hard time seeing him comprehending the concept.
I would just keep him in diapers but as he gets bigger and stronger it gets harder and harder to change him.  It's not a past time he loves so he often fights it and kicks...hard...which makes it nearly impossible.

I hate that this is even on his list of issues right now, but it has been a problem for a year or two now and just getting worse.  I remember getting together with a bunch of other Utah Dravet moms soon after Ben was diagnosed and we were talking about some of the challenges we might face with Ben as he grew older.  Someone brought up aggression and I just cringed.  Anything but that!  I googled it later and my worries were somewhat soothed as I didn't find a lot of connection between Dravet Syndrome and aggression.
Well, here we are, struggling with it Every. Single. Day.
Most people that it comes up with suggest that it's probably because of his limited communication skills...that he's frustrated that people don't understand him or that he's just trying to get someone to pay attention to him.  It makes sense right?
I wish I could explain most of his aggressive acts when he hits, kicks, head butts or throws for absolutely no reason.  We have been to a psychologist and done a Functional Behavioral Analysis (a term I was proud to remember from my own days in SpEd)  on him.  After multiple months of keeping data and trying new interventions our Dr. was stumped and said he didn't know what else to try.  Tomorrow we have an appointment with someone here on campus who specializes in treating behaviors with medication.  Several months ago, we were asked if we would consider trying medication to control the problem and we were very against it at the time.  It is now at the point where something needs to be done and we don't know where else to go.
Ben's hits are not just a little slap, they are a thumping, stinging WHACK!  He hits hard!  And he's quick so it's hard to see them coming and prevent them.
He's constantly hurting all of us in the home, often to the point of the other kids running from him and hiding in their bedrooms.  He hits at school as well as strangers he is walking past in a hallway.  
It hurts me emotionally to see him hurt other people, especially other children, and then for those same children to be visibly afraid of him the next time they see him.  It's frustrating because he really is a sweet little man.
He also is a good hugger and will often lean in to touch his cheek to yours if you're near him.
However, in the same breath, he will pull away and whack you a good makes no sense.
Now, sometimes, he is angry about something when he hits, but I would say most of the time, it is seemingly senseless.
In some research I have done online, it sounds like anti-epileptics are often used to treat aggression.  This gave me a bit of relief as we've tried most of the main ones out there and even though they didn't help his seizures, maybe they would be beneficial now for his behavior.
I have high hopes for tomorrow.  I'm also worried about messing with his personality...I don't want him to become so mellow that he loses his energy and excitement and awesome sense of humor (which we know some of these meds have done to Ben).

So, there we go! 
When he is not being aggressive, he is truly a delight!  And we love him all the time, even when he's hurting us.  What a light and a blessing (and a challenge:) he is to our family.


  1. Oh, I love the pictures of him at school on his birthday.
    Abby is such a good "second mother" to him. Maybe she learned it from Jo. : )
    Will be praying for tomorrow to go well!

  2. I'm trying to find a way to contact you! I have a some who is 12 and going to have surgery in a couple of weeks on his feet similar to your son's. Would you email me so that I could ask you some questions, please?

    Thanks so much!