Wednesday, May 4, 2016

Hemianopsia: the invisible disability

Many of Trevor's challenges are not visible on the surface. Perhaps the most profound is his vision loss.

 Most people are captivated by his beautiful, expressive eyes and never know that they are imperfect in their ability to help him see the world around him.

Hemianopsia is a very real disability and significantly impacts his life on a daily basis.

It's why playgrounds give me panic attacks and I won't allow him to climb them without someone to protect him from all the random death hatches openings. It's why he's anxious (bordering on terrified) in crowded places. So many people and things hiding on his blind side just waiting to pop out and bump or be bumped into. It's one reason why anything near water is terrifying for his dad and I. He could fall into a pond and drown without ever having known it was there. It's why I fantasize about getting him a service dog. It's why he's often marked or bruised on the right side of his face and body. My heart squeezes every time he injures himself on something he didn't see. Now that he's older and has more words and blossoming emotions, he'll often cry giant tears of unfairness and say, "I didn't know. I didn't know!" It's why I'm not sure if I'll ever trust him to cross the street alone. It's why sometimes he'll appear to lose interest in a game. I've observed teachers/care givers assume he's "all done" when in reality the ball just rolled into his blind side and he doesn't know how to find it. I try to use those moments to educate by helping him find the ball so he can continue playing. As he's matured, I've also been trying to educate HIM too. His hemianopsia is one layer of why teaching him to read is tricky and requires extremely individualized instruction. For instance, he continues to struggle with deciphering between the letters, u, v, and w. All characters which look very similar in appearance. Does his field cut make it difficult for him to distinguish? Because he has intellectual delay as well, it's very easy (and frightening for me!) to assume it's a cognitive issue rather than vision loss.

In spite of the profoundness of his vision deficit, he has learned to compensate well and most people would never even know and probably think I'm a loony toon when I share that he's lost half his vision in both eyes. 

I've listed quite a few ways I've observed his vision loss impact him (and us by extension) but without having hemianopsia myself there are absolutely areas that even I am not aware of. At this time, Trevor cannot articulate the way his vision loss impacts him from moment to moment, which is why my heart rejoices when those who are able to articulate share their experience with us. It's an opportunity to learn and gain more understanding, which will help me continue to provide Trevor with meaningful support.    

Tuesday, May 3, 2016

Homeschooling Trevy: All About Reading Short A

Once upon a time I was more of a blogger mom than I am now. During that season of life I had the privilege of partnering with This Old Schoolhouse and reviewing curriculum for their team. 

Now you the know story of  was I came to love All About Learning Press.

I was given the Pre-Reading level to use with Trevy nearly four years ago. And use it with him, I did. I loved it, in fact. But between his developmental delays and our limited time due to school and therapies, it was placed on the back burner once my required review time was completed.

We have continued to work through it during summer breaks...and Trevor has always loved his "Ziggy Time", as he likes to call it.

But now that he's home full time, he's really REALLY loving and connecting with the program.

The pre-reading level is broken into three focus areas. Capital letters, lower case letters, and letter sounds.

Trevor has what is considered acquired dyslexia due to his left hemispherectomy. I am not convinced that he'll ever fully grasp phonics. To give him a rich literacy program, I'm using a whole word (meaning sight or memorized reading) approach alongside this program. All About Reading is based on the Orton Gillingham Method which has had success in the dyslexia community. My philosophy is, he loves it and this is the best phonetic approach choice for his unique learning make-up, so we'll keep plowing on and see what happens!

I need a word stronger than excited to describe how happy Trevy was to "level up" (as he calls it) to sounds today!

One of the best things about All About Reading is how simple it is to use. It follows the same format each day, though it changes from each focus section to the next. Each lesson includes singing, poetry, a game, a craft, and now that we're in sounds he has riddles to solve (speech therapy!) and a sound based snack to make (occupational therapy and life skills!).

I'd be remiss if I didn't mention Tuneville which is an amazing YouTube channel I stumbled on recently. It's dedicated focus is creating educational videos for children who learn best through music! I'm using their letter sounds video at the start of our lessons now. I adore everything about the video, but especially how it incorporates sign language (more OT!) into the lessons!


Today our sound was short a and our snack was "fire ants on apple slices". We modified the ants on a log suggestion because I'm allergic to running to the market! ;)

Trevy was so proud of his snack creation that he insisted we serve some to his big brother, who agreed they were deeeee-lish!

Thursday, April 28, 2016

all the moments


a FB girlfriend posted a beautiful, spontaneous picture of her child playing and asked if anyone else ever feels their heart squeeze with the blessing and gift of being their child's mother. 

Her question wiggled its way right into my mommy marrow.

It's oh so easy to get caught up in the mundane and the difficult. To let the exhaustion filter out the beauty and in the cranky. She reminded me that it's essential to really let my heart marinate in the beautiful, blessed moments. 

Today, I had that moment with Trevy while working on his All About Reading lesson. He was peaceful and joyous in the fresh air and sunshine. THIS is what school should look like for him, I thought.

And my heart squeezed with the blessing of my gift.

I had that moment with his big sister, when she leaned into me while reading Little Pilgrim's Progress aloud for our morning meeting. I love the feels of her cuddles. She's been blessed with a truly sweet voice and when she's using it for lovely things it's one of the most beautiful sounds in my day. I pray that she always uses it to bless and serve others, like she was doing this morning.

And my heart squeezed with the blessing of my gift.

I had that moment with my oldest, who asked if he could join Trevy and I for Trevor's Speech work. His antics had Trevy in stitches and inspired Toby to grab Trevy in a big bear hug and tell him how much he loves him. When his tenderness for Trevy shines through, there is a rich, magical beauty that always takes my breath away.

And my heart squeezed with the blessing of my gift.

I am so thankful for these three children. For every moment we've lived through together. The sweet. The bitter. The growing. The groaning and the glowing. All the moments. They are a blessing and a gift.