Sunday, October 14, 2012

please don't hate us for saying no

I have been following a blog from a mom with a son that reminds me so much of Deacon.  I read this post back in June and think about it often.  At the time, I called Brian in the room to read it to him and we laughed together because it reminded us so much of ourselves.  I could have written it (just change "Trevy" to "Deacon", add a five month old to the story, and the fact that Brian works quite a few Saturdays).  Because this seems to be happening more frequently, I asked her if I could share it with you as a glimpse into our lives.

It’s that time of year again.

When invites to cook outs and beach days and pool parties start rolling in. We know quite a few families in our community between youth sports and library programs and church. It’s inevitable that we’ll get an invitation to a special something or other.


We rarely, if ever, go.

Not out of lack of desire. Not because we secretly don’t like you. Yes, I’m a mentalist on the side. Wink. We dread being asked. And at the same time we love that we are. It makes us feel special and liked and all warm n’ fuzzy inside. And we’d totally love to say yes too.

But have you met Trevy?

I hate to blame it on him. And truth be told…we do have home body tendencies. But there was a time when we actually said yes to cookouts and pool parties.


The thing with loving and parenting a child like Trevy is that nothing is easy. Beyond all the therapies and pharmacy runs and specialist appointments that fill my schedule - there just isn’t an easy place to care for him. Although Disney was surprisingly smooth. But only because he’s happy to be 5 point harnessed in his wheelchair/stroller when Mickey Mouse is the motivator. Lots of visual stimulation right from his seat. We packed gobs of snacks. Also, the heat. Makes ya sluggish. Less curious energy to burn. But in the vast majority of the world it is the exact opposite of easy to keep him safe. Not even being at home is easy. Although at home I can at least have a little faith in Toby and Bristel and the trusty lock on our gate to keep him safe-ish. Sometimes I might even stay inside while the kiddos play in the entirely fenced and all gates padlocked yard. Maybe I’ll try to dust or make dinner. Awfully hard to do when running back and forth to the windows every few seconds. And occasionally jetting outside because he’s no where to be seen. And doesn’t respond when called. My head always goes to the worst places too. Most recently I found him trying to climb the big bush on the side of the house. Who knows why. Maybe someday he’ll be able to tell me? Climbing a bush…who cares, right? But there was that time he got into the essential oils and we wound up in the ER because he ingested enough to be lethal. Caring for Trevy at home is a lot of work too. And our home is (mostly) Trevy proofed. We’re now essential oil free.

Keeping him safe at your house?



It’s not really that we couldn’t go. It’s that we couldn’t go and have a good time. It’s that we couldn’t go and leave without a massive stress headache. It’s that we know how much work it would take to keep him safe. Work = Energy. See us over here? All dark circles and muffin-tops. Those are our silent screams that we don’t have energy to spare. My hair used to be cute all.the.time, people! I used to actually smear on a little make up too. And wear more than sweats which may or may not have holes in the bootie. I used to have the ability to carve work outs into my day – which helped hold the muffin tops to mini sized rather than jumbo.

Trevy is beautiful, extraordinary, amazing, miraculous…

and unbelievably exhausting.

Jonathan and I were just talking about all this last night because someone invited us to a cook out. We talked about how awkward it is to say no and how much we’d love to say yes…


It would play out like this:

We would have The Conversation in the car. The one where we blood oath that we will tag team Trevy. That one of us will not ditch the other for a game of shooters or wiffle ball or…

We would pinky swear it. Pinkies can have a death grip if you really mean it.

Because the one who gets ditched gets mad! Very very mad. Which is not healthy for our marriage. Also, the couch is not comfy.

We made him together – we care for him together. We’re a team. Three cheers for Team Trevy!

And maybe you’ve seen us at a party and it looked like we had it all together. Sometimes things go well for a few minutes. We act all casual as we scope out the hazards (pool, multiple entries and exits to the house and yard, dogs, strangers, random things to climb, random things to eat, random places to smear poo, etc). About 20 seconds in Trevor is already trying desperately to wriggle and wrangle his little hand out of ours. Toby and Bristel are off being kids – because they safely can. Also because it requires all of our attention to manage Trevy and before we can say boo they’re gonzo, jumping in the pool, playing tag. They’re pretty capable and I don’t worry too much about them. Although they have given me the random scare too. Because kids will. But mostly…they’re fully able to run wild with carefree abandon. Everything in Trevor wants to run wild too. To be one of the kids. In some ways that’s exactly what he is. And we could probably let him go too. And he’d probably be safe for a minute or so. Until he wasn’t. Until he decides to just free style jump in the pool – even though it’s over his head and he still doesn’t understand he needs a bathing suit on first. Or kick the dog – even though the dog has really big teeth and he’s showing all of them to him. Or see what’s on the other side of the fence – even though he didn’t tell anyone he was curious. Or what’s in the house – even though he wasn’t invited. Or chase the car down the street because it looks like mommy’s – even though mommy is standing right behind him. Or…well…if you can imagine it he’s probably done it.

He needs 100% supervision 100% of the time.

I repeat…Trevor needs 100% supervision 100% of the time.

And not just supervision. He needs special supervision. Adult supervision. Just the other day he ran after a car that looked like mine while at the play ground WITH AN ADULT!

He has very little concept of safety awareness. And if he were to get into a pickle…he doesn’t have the ability to communicate that he needs help. Which is why I say he’s non-verbal-ish. The ability to say words is not the same as being able to communicate.

Besides, even if no harm came to Trevy probably one of us (cough cough > Jonathan < cough cough)would have allowed ourselves to be coerced into a game of shooters or wiffle ball. And the other would be silently fuming. Steaming from my the ears. Mentally wishing all sorts of evil on the other. And oh there would be blows on the way home. And you don’t want to be responsible for Jonathan sleeping on the couch, do you?

:: wink ::

How do I know all this would happen? Because it has! And we’ve decided that we just can’t do parties and things. Not now. Maybe not ever.

This is our life with Trevy.

We like being married to each other.

So, pretty please with a cherry on top don’t hate us when we say no.

And when I say us…I mean all of us. All the Trevy lovin’ families out there. Any family that is heart connecting with this post because they’re lived it too.

Don’t think we’re snobs.

Or that we secretly have a beef with you.

Give us a little grace. And keep asking…

because you never know. Maybe one day we’ll get all crazy on ya and actually show up. With a side of potato salad too! Maybe it’ll even be home made! Whipped together between 20 second peekin’ out the window runs.

Saturday, October 13, 2012

Week of Progress

Deacon deserves to celebrate!! He has kicked butt this week by accomplishing two HUGE milestones!!
First up, feeding himself with a spoon:

He has been practicing at therapy, and this week Deacon blew us away by grabbing his spoon and getting all of the food in his mouth with each bite!  He was so proud as we cheered him on!
Now that he is sleeping well in his new room with Carson and also knows how to climb in and out of his crib, we figured it was time to convert him to a toddler bed.  Look how huge he looks standing next to it:

He had no problem climbing in and out
...or jumping!!
It brings tears to my eyes to see how far he has come!  There are so many unknowns with his autism and epilepsy, that no milestone is promised.  It feels amazing to be able to check a couple off the list.
Way to go Deacon!! 
(PS- Have you noticed what a ham he is for the camera!?!)  

Sunday, October 7, 2012

Deacon: Gluten Free

A few weeks ago, Deacon's therapist suggested putting Deacon on a gluten-free diet.  She told us that Deacon reminds her of a couple of other children she has had in the past and they had great success after eliminating gluten from their diets.
If you know Deacon, you know feeding him is a challenge...he is extremely picky when it comes to tastes and textures, and his diet mostly revolves around breaded food.  Gluten is in most food items, especially those with breading.  A strong favoritism to these types of food many times is a huge indicator to a gluten sensitivity. 
After asking around and doing some research, we took out all gluten from his diet three weeks ago.  It hasn't been easy, but is easier than we expected.  I think a lot of the ease has to do with a new trend to give more descriptive lists of ingredients and advertise foods that are gluten free. 
I will say, the first two trips to the grocery store took about 3 hours due to label searching and stopping to check out the companies website from my phone.  Luckily, many food production websites (and restaurants) are starting to list products they sell that are gluten free.  Here are a couple of good ones, in case you are interested:
Deacon continues to improve from therapy.  He will sometimes color without assistance (and without eating the crayon!!):

He responds to his name more frequently, understands a few things we say (ex: knows when we say we are going bye-bye that we are leaving and will go stand by the door), signs for "eat", claps, and makes many different sounds.  He plays with a variety of toys and engages in play with others much more often.  They are working on getting him to eat independently with silverware and follow more instructions.

We are so proud of the progress he is making and thankful for our friend/neighbor/babysitter, Melissa, for driving him to and from therapy each day.