Warning: this will be long, but for the sake of record-keeping, I want to write the whole story at once, so bear with me.

From the get-go, parenting Bennett has been more challenging than what we experienced with Luke. Not that it’s all bad; Matt reminds me that having a child like him is humbling lest we think we’re inherently really good at this parenting thing (based on how Luke has typically been pretty easy to figure out).

Bennett’s always been the more intense, tempermental one, the one who gets in trouble and sometimes doesn’t care, and the one who has overblown tantrums at times. But he’s also the child with the most empathy, the one with hugs and kisses for no reason, and the one with the sweetest voice I’ve ever heard. And sometimes, after a few rough days weeks whatever, we’ll go for a stretch where there aren’t any remarkable issues and I forget why I thought he was difficult. For like three days tops.

Well, behaviorally, we hit our most intense and difficult spot with Bennett early this fall. I mentioned several weeks ago that he was giving me a hard time with dressing in fall clothes. That was an understatement. He started Freaking. Out. when he had to get dressed in pants and a long-sleeved shirt. He’d cry, fight, kick, take off the clothes I’d managed to get on him, tell me that they were hurting, and (this one made me SO sad) cry in his room saying that he wished it was nighttime so that he could just be in boxers. He’s always been a hot-blooded kid, so I realized that he might not need the layers that Luke prefers, but I couldn’t let him outside in 50 degree weather in shorts.  He would spend up to an hour in his room crying and fussing about things until I could get him distracted enough to play with something.  Then, he might be fine for the rest of the day, or every time he went to the bathroom and had to readjust his clothes, he might start all over.  I never knew.

I started a behavior chart where Bennett would get a sticker if he got dressed without throwing a complete hissy.  There are only four spaces in each line for stickers, and it took him like 10 days to get four stickers, and thus go to Walmart and pick out a package of Starbursts as a prize.  We were not making much progress.

As the days went by, I was about to lose my mind. I spent a good portion of the day either yelling at him or crying myself about this situation over which I felt I had no control. We were to the point that it was interrupting our normal routine; getting to Walmart was almost impossible, or the trip to the pumpkin patch on a chilly, windy day was ruined by his refusal to dress appropriately. After he’d get home from preschool, he’d undress and get in some boxer shorts, and prefer to stay in the house instead of coming outside to play. I noticed at AWANA, when he was sitting on my lap listening to a story (and truly not concentrating on how bad his clothes felt), he was squirming as though he was trying to get the clothes away from his skin (think of how a wool sweater feels, and the way you’ll move to get it away from you).  Through all of this, I  started thinking about some of the other parenting “rough patches” we’d been through with him, and I realized that he’s had some other tactile issues that have coincided with extreme behavior.

I just put this here because he's cute and it breaks up the wordiness.

I just put this here because he's cute and I wanted to break up the wordiness for you.

Like problems with his seatbelt. I mean, no kid likes their seatbelt to be tight, but he’d freak out. Especially if he had a jacket on and it got bunched up, he could barely handle it. Then, there was the stage where I had to cut the tags out of all of his underwear. And the rough stage early last summer when I could not find a pair of shoes he would wear without throwing a fit, because they were all “too tight” even though they were almost falling off in some instances. The light bulb came on for me.

Immediately, I was so thankful to have had some experience with kids with sensory integration issues, because I felt like this was probably what we were dealing with on some level. Though, I knew it would probably be minor because he didn’t have other tactile issues like avoiding messy things to play with (playdough, mud) or having a problem with eating certain foods or having messy hands/face when eating.

Matt and I were definitely struggling with how to go about getting through this.  We both knew that there was a strong behavioral component playing a role; however, I was convinced that some occupational therapy might be appropriate, given the history I’d recently realized.  Matt and I did some research online together regarding sensory integration issues, and decided that it was time to get outside help with this.

I got a referral from my pediatrician to an occupational therapy office about 20 minutes from our home.  I couldn’t wait to see the OT!  Yet, I have to admit, I was incredibly nervous about going to a professional and coming home with a diagnosis.  A label.  But we needed help, and if that’s what it was going to take, I was going to have to get over it, and quick.  Because I needed to be able to leave the house with this kid.

Bennett and I spent an hour with an OT who listened to me tell his story, and then went through a huge checklist of sensory issues.  There are seven areas where kids can have issues, and of those seven, Bennett had one little flag in an area not related to touch, but it wasn’t something that was causing any problems (honestly, if most of us took this sensory evaluation, we’d probably find one or two things that describe us…but don’t interfere with our daily lives.  Those are just quirks, and we’ve all got them!).  And even in the tactile area, where his issues lie, he only had a couple of things that were problematic.  The OT was very positive and assured me that this was something we could work through and hopefully very quickly make some progress on, as it was so isolated.  This isolation also meant that he didn’t get a label or a diagnosis officially; he’s just being treated for tactile defensiveness.  Which was a relief to me, too.  I asked if his clothes could really be hurting him, and she said that his body could be interpreting the light touch of clothing as discomfort or actual mild pain.

So the treatment plan our OT came up with was that we’d see her once a week for 3-4 weeks, and he’d do a 30-45 minute session with her.  They do all kinds of cool things that help calm his body and teach him to process the light touch of clothes appropriately. And he does GREAT with her.

However, the main part of his therapy falls on me. We’re doing a brushing program (Wilbarger Therapressure to be exact, if you’re familiar with OT…the only info online that I could find is too detailed to link to and give you any quick, usable information).  The whole idea behind this therapy is that it teaches his body to respond appropriately to the light touch of his clothes.  Basically, it’s me, seven times a day at 2-hour intervals, using this plastic-bristled brush to firmly brush over his arms, back, and legs, and then applying some deep pressure at his joints. At night we do an arm/leg massage with lotion. It only takes about 5 minutes per brushing session, but I tell ya what, dividing your day into 2-hour chunks makes it go by pretty fast…it reminds me of having a newborn on a feeding schedule, though that’s far more time-consuming!  He’s more than surprised me by being totally cooperative with the brushing protocol.  And if he fusses at all, I remind him that we’re doing it to make his body feel better in his clothes, and he doesn’t cause trouble.  That’s a miracle in and of itself. 

We’ll have our 4th visit with the OT this week, and so far, she’s been happy with his progress. And so have I! Getting dressed has been much, much better. He has a couple of favorite shirts, so he always picks one of those if they’re clean.  He’s gotten a star on his chart everyday for the past three weeks (though I have had to coach him through dressing several times).  He’s wearing a t-shirt to bed with his boxers, and he wants to be covered up with the heavy quilt my mom made for him (before, even when his room was really cold from a/c or windows open, he refused any kind of blanket/sheet).  He’s even dressed himself in clothes I’ve laid out the last three days in a row!  There are still lots of hiccups (who’s dreading winter coat season?  Oh, that’d be me.) but we’re moving in the right direction, which feels great.

My prayer now, as we’re treating this, is that someday, this is just part of the story of Bennett. How we figured out that there was a bit of an issue, and we worked through it, and there are no lingering effects. That taking care of it early meant that there were no distractions by the time he got to kindergarten. And that we have fewer of the “rough patches” and more of the real, sweet Bennett shining through.

16 responses to “Challenge.

  1. I’m glad that things are getting better and that you found someone good to help you. Bennett is blessed to have such great parents. . .

  2. You are such a smart mom for connecting the dots like you did. I’ll be praying that you continue to see good progress with all this.

  3. Wow Nicole, that sounds really tough! I couldn’t imagine how stressful that must have been each day to go through with him. That’s so great that God brought to mind all the previous things in your life and in his and connected them so that you could get him into the OT. Way to go! And thanks for sharing your journey with us!

  4. You explained this really, really well! Since you first told me about the brushing, I have thought of it many times but never at a time when we’re talking or e-mailing! So I’m very relieved to know that it’s going so well.

    Lucky Bennett–to have gotten you & Matt for parents. You are such a good mommy to all your kids, but for Bennett, you have been so insightful, patient, & persistent in following your gut feelings.

    Sounds like great progress in such a short amount of time. I know it makes everyone in the family happier!

    Don’t be discouraged by inevitable setbacks!

  5. I am so excited that the therapy has been so successful. Bennett is so full of spirit, it’s good to know that he is overcoming difficulties & it isn’t slowing him down.

  6. poor bennett. i’m so glad you figured it out, for both of your sake. i’m so glad he’s doing better!

  7. Jill (thebaglady)

    Both my boys are like Bennett to a lesser degree, but VERY similar. Now that you say all this, they both do SO much better when we massage them, give big long bear hugs, etc. Especially Blake – he preferrs deep pressure touch to light tickles… really makes me think. Thanks for the insight. Jo is right, those boys are lucky to have you guys for parents.

  8. Nicole and Matt – you are amazing parents. Bennett is very lucky to have you as are Luke and Jack Henry. I’m so glad you were able to put all the little pieces together and figure out the issue. Glad to hear that Bennett is making such great progress in a short amount of time!

  9. This is such a fascinating story. Thank you for sharing it on-line. Very much worth reading. I often find myself in a similar situation with my son and, quite frankly, do not know what to do.

    This is a very insightful look into the possibility that there may be other solutions out there in the world.

    Hooray for the power of the internet and best of luck with your son’s treatment.

  10. hey, maybe i had a degree of that with my tantrums about my seams on socks!!!! bennett reminds me of a little heidi, from what i hear. hey, maybe with that strong will, empathic nature, and “nothing can stop me” attitude, he can end poverty or cure AIDS! 🙂 seriously, though, i think he’s a gifted child with a successful, amazing future. he’s lucky to have you both as parents, for sure, and i think you’re blessed to have a kid like bennett! that one pulls at my heart strings…. keep us updated–sounds like the OT work is showing lots of progress QUICKLY!!! very interesting to me!

  11. Nicole, God gave you the talents to figure that out as well as the patience and the love that you have for your family and you are using all your talents in the way He wants you to do so. (Last Sunday’s gospel was about the talents/coins given to three servants and how the first two used them.)

  12. This is so ironic as I decided what to post today. I’m so happy for him (and you) and I’m sure he’s feeling so much warmer! 🙂

  13. Also wanted to say that I love the pic of your dad and Bennett!

  14. Wow…I had no idea! I assumed Bennett was just the child who was going to challenge you more than the other boys. So glad to hear you were able to figure out what was going on and find a way to help him.

    And, I love the picture too! Those type of pictures are treasures!

    Do you have any pictures of your dad when he was young? I’d love to see a picture of him and Bennett side by side. I’ve always thought Bennett had more of a “Pals” look.

  15. I agree w/ Mandy–I’d like to see a pic of your dad when he was Bennett’s age since I think B looks so much like him!

  16. Pingback: Four. « Here’s the Diehl

Talk to me!

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s