Unwritten

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inhibitions

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else

Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins

Feel the rain on your skin
No one else can feel it for you
Only you can let it in
No one else, no one else

Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten

Natasha Bedingfield ~Unwritten

On top of the recent escalation of Nik’s mystery pain, he’s begun having a really difficult time lately at PT and OT. We have no idea why; I’ve been with him nearly every single time and if I wasn’t then Niksdad was. Nik used to laugh and clap and squeal with glee when we pulled up in front of the office. For the past three weeks though —whether in conjunction with the escalation of his pain episodes or for some other reason entirely —Nik has had complete meltdowns each time we go.

Things progressed from Nik screaming and crying as soon as we walked through the door —and proceeding to then thrash and slam his head on the (carpeted) concrete floor— to having a complete screaming, crying meltdown in the car as soon as he realized where we were going (based on the route we took). On Tuesday of this week, Nik lost it shortly after we left home; it’s a six mile trip each way. We decided to discontinue his playgroup because it got to be so bad; I think he was freaking out some of the other moms and one or two of the kids, too.

Anyway, yesterday was no different —at first. As soon as we pulled out of our neighborhood and onto the main road, I saw Nik’s face scrunch up in the pre-meltdown expression. Since he’d been in a great mood thus far all morning, I knew it wasn’t from pain; I started to distract him by singing songs from Signing Time videos —over and over and over. It worked to not only distract him but it got him laughing and clapping and trying to sing along. (You should hear his rendition of “…Signing Time with Alex and Leah, come and play…;” it’s utterly adorable!) I thought I had found a magic solution —until I pulled into the parking lot.

Interestingly enough, Nik cried and screamed but he cooperated with me. He didn’t kick and thrash and roll on the ground as he has done in the past few weeks. He sat down in a chair at my request, took off his shoes and coat, and then ran screaming…to the playroom! There were many bumpy and hysterical patches but, overall, Nik did really well. Miss D, our awesome OT who is now fully certified in sensory integration diagnosis and techniques, followed his lead and found ways to turn each struggle into a new game. By the time we left, Nik was smiling and happy. He spent more time playing one-on-one with Miss D and really paying attention to her —her eyes and her face especially, and he even gave her a kiss when we left! Then he turned around and wanted to go back inside again! So we did that for a little bit; I really wanted our leaving —and Nik’s experience of entering the building, too —to be joyful for him.

I am happy to report that it worked. In fact, Nik spent the entire rest of the day being giddy and giggly, affectionate and funny, and as cooperative as any willful toddler can be in one afternoon. In short, the rest of the day was delightful! But it gets better…

We had a feeding therapy session in the afternoon; Nik’s nap was cut short —always a crap shoot —and it was a decided change in routine which I wasn’t sure Nik would handle well. You guessed it; I was wronger than wrong! I think I can say without reservation that this was his best session ever. EVER.

Maybe it was our visit to the neurologist on Thursday, followed by the bloodletting —er um, visit to the lab— for a multitude of tests. Or perhaps the moon and stars were in perfect alignment. Whatever the reason, Nik was a total superstar with Miss M. To quote Miss M, “Nik’s the best speech therapist I’ve ever met!”

You see, Miss M has been working with Nik to teach him the necessary oral motor skills to actually take a bite of food. Progress has been slow. It’s only been very recently that Nik would even tap an apple wedge against his top teeth, let alone let any other food come into contact with them. He still guards his lower teeth with his tongue even when he’s sipping from a straw. We’ve been doing exercises with his chewy tubes to strengthen his masseter muscles as well as to try to reduce some of his oral defensiveness.

The game plan has been to gradually move through stages:

1. accepting the tube near the back of his jaw, followed by;
2. five consecutive bites on the tube at he back of his jaw on each side, then;
3. inserting something crunchy like a potato stick inside the tube and repeating the bites at the back of the jaw to introduce the sensation and sound of crunchy solids.

The idea is that Nik would gradually tolerate the sound of the crunch —which startled him terribly once before— and allow him to get the tiniest bit of dust-like crumbs on his tongue. This would then lead up to:

4. taking multiple bites on the tube and crunching the contents and then;
5. voluntary biting in the front of his mouth, followed by;
6. biting and crunching along the full range of his mouth.

You can see where this is going, right?

If I told you that we’ve only recently mastered step two, you might understand why Miss M and I were both utterly speechless yesterday when we introduced step three and Nik took off like a champion thoroughbred and raced through the entire process —all the way to step six —completely independent of any coaching or input from Miss M! Multiple times.

As if that weren’t enough, Nik showed off his new growing sign language vocabulary for us; he can now sign eat, apple, please, thank you, more, shoes, and cat. He is close to mastering share, cheese, and bye-bye. Yesterday, we added another emerging sign to the list, too! But let me back up a bit, first.

Nik’s current manner of asking for things is to grab our hands and direct us toward the object he wants; sometimes he wants us to perform a task such as opening the buckle on his lap belt or taking off his shoes. We are trying to pair Nik’s non-specific requests with at least an acknowledgment. For example, when Nik drags my hand toward his lap belt I will say “Oh, you want Mommy’s help? If you want Mommy to open the buckle show me ‘please.’ Sign ‘please’ for Mommy.” As I say this I am also showing him the signs for open and please. (Nik doesn’t sign yes so we use please in its place.) When he signs please by patting his chest, I open the buckle and praise him.

The most important element is that we make Nik acknowledge and confirm what he wants. He is becoming much more consistent with this. When and where we can, we try to introduce new signs. So when he “asked” me to open his lap belt yesterday at the end of therapy, I asked him to show me open —fully expecting that he wouldn’t but that we would make a few attempts before we defaulted to please. You could have knocked me over with a feather when Nik responded with a sign which is clearly his rendition of open and then followed it with the intonation of the word as well!

Yes, I got teary.

Meanwhile, Miss M needs to completely rewrite all of Nik’s feeding goals and some of his speech goals. His augcom devices have finally been ordered and should be in soon. At this rate, I suspect Nik may outgrow the need for those specific devices pretty quickly. We are going to start working on photo cards soon, too.

In other areas, I think I’ve mentioned before that Nik is beginning to really cooperate with simple directions such as sit down, give it to me, give Mommy a kiss, come here (not as consistent but I think that’s more about willfulness!), and the like. He is also making big strides in self help skills such as putting on socks and shoes —with help, of course. Nik also practices taking off and putting on his own shirt nearly every chance he gets —sometimes with very humorous results.

So, as Kristen reminds us in this eloquent post, our children’s stories —indeed, all our stories —are still largely unwritten. Nik’s will, I suspect, have multiple plot twists and more than a few cliff-hangers before it’s finished. Just when I think I am in control of the plot, my main character throws me a curve. But then, I wouldn’t enjoy the ride half as much without a little excitement, right?