Saturday, August 6, 2016

he doesn't need the potty chart anymore

This chart has been hanging in our bathroom for years.

And I do mean YEARS.

It has been many moons of patience and energy (mingled with blood, sweat, and tears) to potty train Trevor. There were many moments of despair along the way. Moments of anger and annoyance and the occasional glimmer of hope which was kept us pushing forward.

Sometimes people will look at Trevy today and reduce or minimize the journey it's been to get here by assuming he's "nearly typical" now or only "slightly delayed".

It wasn't that long ago, he was still smearing his poo everywhere. All over his bed, his walls, himself. TMI, I know, but it was our life for a very long time. We've been through various layers of difficult and heart wrenching things, but it was the poo smearing that most nearly broke me.

Today, as I was looking around the bathroom planning for some refreshing, I realized that he no longer needs this chart.

I can't say that it ever just "clicked" for him, and we still have an occasional accident. He continues to require assistance with wiping and such. He is not close to being able to use a public toilet without a caregiver. 

But he doesn't need this visual support anymore.

This is kinda huge for me.

It's one of those "inch-stone" moments in the life of a special needs family.

I should go buy a cake or something.  

Thursday, July 28, 2016

he keeps loving and trusting me

Trevor has felt nauseous since December. He's complained of feeling "tired sick" or "throw up sick" or "tummy sick". His appetite has decreased dramatically and he's lost 10 lbs since his symptoms cropped up. We are working with his specialists (and adding new ones to the team) to try and get to the bottom of what's going on. In the meantime, this is the very reason why, at last year's physical, when he was at the top of the BMI scale, I was secretly thrilled on the inside. It was the first time in a long time that he physically looked healthy, regardless of what the charts say. I despise standardized anything, not excluding those silly healthy weight charts. I knew that anything could crop up medically to change his health and weight. It did. And here we are. 

He is unable to swallow pills, so I crush his pills and sprinkle them in food. We've used everything under the sun, but applesauce has worked best for as long as I can remember. 

However, with the nausea in play, he's been, quite literally, gagging his meds down. It's pathetic to see and my heart wrenches every time he's heaving at my own hand's offering. 

Here's the thing, though. Even though he complains. Even in spite of gagging and feeling generally crappy. He still swallows. He still swallows AND he keeps loving and trusting me! 

This is just one singular reason why he's the bravest person I know.

Today, I tried mixing in apple juice to see if maybe having less texture would be helpful.

It was a success.

Of course, it's only ONE day and one dose. But I hope it continues to help him. Any little thing I can do to improve his quality of life, which encompasses taking necessary medication daily, is a win. Today, it was an apple juice med cocktail for the win. We'll take it. 

Wednesday, July 27, 2016

comfort books

He was told "no" this morning when he suggested eating breakfast at three different establishments. My theory that home is best for breakfast did not impress him.

He stumped upstairs whining.

I heard the whining subside but was unprepared for the heart-melt moment when I found he had comforted himself by making a pathway of books to his bed.

He's never successfully build a block tower during neuro-pyche testing which is one of the markers of intellectual disability. I think we need to re-vamp the test to include making book walkways instead.