Nana and Jack

Who could have known that this past Christmas was the last time we would decorate Nana's house?

Nana died early this morning. Since the day he was born, Nana loved Jack. Nana did not always understand what was going on with Jack. Honestly, she frequently infuriated me with her low expectations for Jack. But you know what? She always always always loved him and she was so proud of every little thing that he ever did. She declared to the world this is my grandson Jack (we had to remind her that he was a great-grandson) and then she would launch into a story of his latest accomplishment.

I hope that he remembers her even if he only remembers the feeling of love that he got from her. That's what I want him to know.

Trikes bikes big wheels oh my!

The kids each brought their vehicles. They are rarin' to go to raise money for St. Jude Children's Research hospital. There's still time to donate. Go to www.mytrikeathon.org/jackdsmith. We can accept donations through next Friday, April 30th. Thanks for your support!

Carbo-loading

He's carbo-loading before the trike-a-thon tomorrow!

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Practicing for the trike-a-thon!

Got a ride away kid? Our radio flyer is the perfect trike. You can grab the parent steer bar and slow 'im down or steer him out of traffic.
Jack is so ready to raise that money for St. Jude's. You can visit his page at www.mytrikeathon/jackdsmith if you'd like to sponsor him in the trike-a-thon.

God's Timing

Remember when I asked everyone to pray that Jack would enjoy the pizza and not get sick? He did not like that pizza at all. BUT several months (maybe a year?) later and he loves a supreme deep dish pizza. He finished his first full slice and immediately commanded, "Mama, get some more pizza!"

Jeremiah 1:5

This morning he is wearing the t-shirt that I made and wore to nearly every one of his surgeries. It's the first ultrasound that I ever had showing Jack as a tiny little sack. In a circle around the ultrasound are the words "Before I formed you in the womb I knew you..." It's from Jeremiah 1:5. God knew Jack and had a plan for him long before I knew Jack. He also knew that Jack would grow big enough to wear this t-shirt!

Wearing Mama's t-shirt

See how big he is. It doesn't even look big on him.

Introducing "Cane"

Jack has a new constant companion. No, no, Irish has not been replaced. Where Jack goes, Irish usually goes too but now you'll be seeing Jack, Irish, and "Cane". I read somewhere that it's good for a child who uses a cane to name it. As typical with Jack, he names things what they are [He's got a plush puppy named Woof woof, a barking plush dog named Barking Dog, etc.]. So his cane is Cane.

A cane? Why does Jack have a cane? He's not blind! No, he is not completely blind. I think my recent Life at Dusk post gives a fair analogy of what Jack's sight is like. The cane is for Jack like glasses are for a near-sighted child, it helps him to better understand what he sees. It helps him to better navigate the world around him.

But Jack already wears glasses! Yes, he does. The glasses protect his eyes. Jack's visual impairment is caused by optic nerve atrophy and cortical visual impairment. The problem is not the image that comes into his eyes. His eyes themselves actually do a great job and only need a slight amount of correction. So the glasses don't really help his vision in a functional way.

Here are a few more articles that might help you to better understand Jack's cane use.

Why Do You Want to Make that Child Blind?

STEP TOWARD EQUALITY: CANE TRAVEL TRAINING FOR THE YOUNG BLIND CHILD

Blind Enough for A Cane?

We introduced the cane late last week. David really got Jack's attention by taking the cane and walking around in our tiled bathroom. David didn't say a word but Jack heard that cane tapping and ran after David to see what was going on. Here's a shot of that first evening.

David's next step as Jack's orientation and mobility instructor was to take Jack on an outdoor walk. Jack is already familiar with our home so he prefers not to use the cane in the home. David knew that we needed Jack to see that the cane actually benefitted him.

David is carrying a bamboo walking stick to simulate a cane and showing Jack how to keep the cane in front of him.

It wasn't long before Jack got the idea.

Of course, he's a little boy and he wanted to have a little fun like his Uncle Noah.

Here's a short video taken during this first cane outing.

After walking around on the sidewalk for a while we decided to try locating and going up and down curbs. Jack is very used to having to stop and shuffle walk until he finds the edge of the curb with his feet. Here's David trying to help him realize the cane can help him find the curb so he can continue his normal pace.

Jack discoved on his own that the cane helped him to "see" that the white lines in the parking lot were flat and not elevated. He was fascinated by this and ran his cane over and over the area.

Here's Jack proudly posing with his cane. He told me "Achoo [it's how we used to get him to smile for pictures] take a picture."

Learning how to manage the cane in the grass.

Tap tap tap on the wall

Using the cane to explore the park

Fun fun fun

He's still a little boy so sometimes he has to be reminded that the cane goes on the ground not waved around in the air.

Still perfecting the technique for uneven ground

Crossing a bridge over the creek

Hey Daddy, come sit with us on the creek bank!

Click for more Wordless Wednesday, Wordful Wednesday, and Special Exposure Wednesday posts.

Where the Beep Beep Went Wrong

You might want to review last week's Where the Beep Beep Went Right. And then the intro....

New to the Life is Therapy series? Here's a quick blurb to tell you what it's about:

Sometimes we parents can get bogged down in the notion that the teaching of our children must be done by professionals. Parents of children with special needs are particularly vulnerable to this idea since children with special needs often have to learn and develop quite differently than children with typical needs. This series centers around the idea that learning can and does occur most effectively through everyday life experiences at home and out in the community--for children with both typical and special needs.

You might remember this and this and this

from last year's Beeping Easter Egg Hunt. I was NOT making the same mistakes this year! If he did not want to hunt Easter eggs or pose with his basket, that was fine. We would just enjoy being outside and he could run along the yellow tape to his heart's content.

*As a quick aside, anybody notice that my kiddo has had another growth spurt?*

So that's it...I did everything right and we had an awesome time with no issues at all that day! Yeah, right!

Not long after he began running around in the grass, Jack started asking me to carry him. I tried and tried and tried to tell him to walk but oh no he wanted Mama to carry him. I thought maybe it was because the sun was too bright and I forgot his sunglass clip ons. When the sun is very very bright he tends to get clingy or he gets rooted to one spot or the shade. I relented and carried him around a bit until we happened upon the trampoline and he declared, "Shoes off, jump, jump!" as he frantically pushed at his sandals.

He slowly worked his way up to a standing position on the trampoline as I snapped pictures

.

That's when I noticed how big (relative to how small they were) his feet are getting. I checked out his toes and sure enough his little piggies were rubbing against the inside of those sandals. No wonder he did not want to walk!

A fairly short time after we started jumping (relative to the amount of time we usually spend jumping on a trampoline every time we get a chance), someone announced that the tactile puppet show was about to start. I'd had my heart set on Jack experiencing the tactile puppet show. I gave him the 10 minute countdown and we went inside where he immediately began fussing about going back outside.

It was a bit loud with the live music and people just coming in for the puppet show. I told Jack that this was new and fun. I told him that I wanted him to give it a try before he decided that he did not like it.

A musician brought a drum over and Jack began banging away in about 15 seconds of pure joy but then it clicked...I guess he thought I tricked him. He began getting all upset again and the musician just did not know what to do. Frankly, I didn't either. I was playing all this by ear. I told the musician to go ahead and move on to the next participant since I did not think Jack wanted to play anymore. I tried for another eternity five minutes or so to get Jack to calm down and feel the puppets but he just wasn't having it.

A sympathetic mom offered that her son also gets overwhelmed in large noisy crowds like that one. While I thought that some of it was tantrum (about wanting to be outside), I had to agree that the environment was a bit overwhelming. I took him just outside the door in hopes that he would calm down enough to return. He did calm down but he wasn't going back and that's when we headed for the swings and he was happy again.

So where's the therapy in all this? Well there was the new experience, the jumping, the running around, the listening to instructions (sort of) but mostly there's the review....overall Jack had fun. I know the parts that he enjoyed the best. In review, I can tell you where I went wrong--too small shoes, no sunglass clip ons, not really giving him clear information about the puppet show and how there would be lots of noise and lots of people. Each time, we try something new it prepares us both for the next time we have that experience and if I take the time to review what went right and what went wrong, then I can do a better job the next time. I'll never anticipate everything. I'll never get everything right. It's part of the parenting journey. And now I'm a little further along on the journey. Each experience better prepares for the next especially if we take the time to think over just what happened.

Next time an event doesn't go like you planned, I encourage you to take a little time and review.

Recent Life is Therapy Posts can be found at:

Boring Life
Spring Break
Code Words
For more Life is Therapy Posts, check out the left side bar.

Now it's your turn to participate. This is where we share our ideas and stories with one another. We're all in this together. Let's laugh together, motivate one another, and stimulate each others ideas. If you have a blog, create your own "life is therapy" post and leave your link in the comments. If you don't have a blog just leave a comment with your life is therapy story.

Life at Dusk

Do you ever think and think and think some more about a subject but find that you cannot wrap your brain around an idea? So you just kind of shelve it and labor along with your limited ability to understand. Then one day something fairly insignificant happens and the cartoon light bulb pops on over your head and you hear the ding ding of the jackpot in your ears?


Jack would live outside if we would let him. We returned home from church one evening and the usual clamoring to play outside began from the back seat. "Okay, 10 minutes!" I declared with a plan to be firm.

We stepped out of our garage into the cooling evening temperatures and I shivered a bit, glad that I had already time-limited this little adventure.

Jack took off for our backyard. I ran after him as my eyes began to adjust to the dim light from our neighbors' houses and the few street lights. I could make out Jack's form ahead of me and I could tell that he had dark colored clothing on but I could not make out the color. When he turned toward me, I recognized the shape of his face and his glasses but I could not make out his facial expression. I thought I saw something in the dark and tried to step over it but my foot found nothing to step over. I tripped over the garden hose that did not stand out in the dark. I found myself able to make my way around the yard but the trip over the garden hose was enough to make me extra cautious lest I fall over any other unseen objects in my path.

Suddenly, ding ding ding, a heavy fog lifted from my brain. This is it! This must be it. Jack lives in a constant state of dusk. He's not completely blind. He can see but he has difficulty making out fine details. Without high contrast and good lighting, he cannot distinguish one color from another. He needs high contrast thick letters 2-3 inches high for near work.

It's life at dusk with a couple of additional challenges. The difference in the left and right eye causes Jack not to use his left eye causing depth perception issues. We also learned at Jack's recent follow up with the vision rehabilitation doctor that Jack has cortical visual impairment.

His brain does not always process the signals it receives appropriately. Some days he sees better than others.

Here's a quote I found interesting "When a child with CVI needs to control his head, use his vision, and perform fine motor tasks, the effort can be compared to a neurologically intact adult learning to knit while walking a tightrope." And that is just if a child has CVI.

I guess you'd have to add "at dusk and without depth perception" to the end of the quote to describe Jack's optic nerve atrophy as well as his CVI.

Take a walk at dusk sometime and think of Jack.

Where the Beep Beep went Right

The Series will return....we're still trying to get caught up around here and that includes returning to a regular posting schedule. If you've got a Life is Therapy story, please feel free to either leave a link or leave your story in the comments.

We went to the Beeping Easter Egg Hunt again this year.
This year, I was smart. I had my expectations in line. I knew what his favorite parts would be.....

the HAMBURGERS,

just being out of doors,

jumping on the trampoline,

and swinging.

Come back later and I'll fill you in on what I got wrong...

Easter Tradition?

Anybody remember last year's ignoring of the Easter basket? Well this year, Jack actually met the Easter Bunny! Mr. E. Bunny himself went to Jack's school and shook Jack's hand. Ms. Sunny reported that Jack thought the Easter Bunny was one funny guy.

We were thrilled! Since Jack enjoyed meeting Mr. Bunny, we thought it would be a little more concrete for him this year. I talked to Jack about how the Easter Bunny was going to bring him a basket with some surprises. And with a few ideas from some friends, there were great items in the basket. They were sure to please. I just *knew* that this year was going to be different.

To help build the anticipation, I really hyped up the Easter Bunny and the basket on Saturday. Then Saturday evening, I got Jack to help me decorate a very tactile high contrast Easter egg.

It's a foam "egg" on black construction paper. Jack added the bright foam shapes stickers.

I told Jack that we were decorating the egg and leaving it in the basket to let the Easter Bunny know that we celebrate Easter and he was welcome to stop by our house. I even got Jack to help me put the basket in place. My plan was going great!

Sunday morning we woke up to find the egg moved to the art wall and the basket filled.

Dancing, singing, light up rabbit, Spinner rabbit, water balloons, bubble spinner, spinning tops, chocolate Easter bunny, miscellaneous candy, cheese puffs, and popcorn.

And here is a transcript of our conversation:

Marie: Let's see what the Easter Bunny brought you!

Jack: Take a bath!

M: You want to take a bath now?

J: Yes. Irish!

M: Okay, let's go find Irish.

J: Searching. Irish.

M: Searching. (Spots Irish). In the bag.

J: (vision not so good this AM--fluctuates due to cortical visual impairment) Irish?

M: In the bag.

J: Irish?

M: (thumps Irish to make noise) Here's Irish!

J: Irish! (Grabs Irish)

M: (squeezes singing, dancing, light up bunny's hand hoping to generate Easter basket interest) Look!

J: Turn it off.

M: Turn it off?

J: Yes.

M: (turns bunny off)

J: Take a bath (heads to bathroom)

*sigh* Jack was not this conversational last year. He speaks so much more and so much more clearly this year. We have much to be grateful for. But I have to be honest....I really really really wanted him to get excited about that basket this year!

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Where is All Access Pass to Jack?

PEEK A BOO!

Sorry I've been scarce around these parts. We have had some very busy days in our household. I hope to get back to more regular posting soon but I wanted to reassure all of you that Jack is not sick or having surgery or anything. He is busy growing and being a little boy and amazing us with how mature he is becoming.

Haircuts have always been a big chore for Jack. Back when he is around one and a half, David and I decided that haircuts were a Jack and Daddy activity. Jack would flail his extremities and his head so that he looked like he was caught up in a tornado while getting his hair cut.

David has been taking Jack to Ms. Barbara, the barber, since that time. Ms. Barbara has always been patient and understanding. In fact, she and her cohorts at the barber shop kept telling us that they have seen much worse.

Then there was yesterday. Jack walked into the barber shop without fuss. He walked up to Ms. Barbara and said "Hey!" After she said, "Hey Jack", he said "Sit in the chair." Ms. Barbara set up the chair for Jack to sit alone and to everyone's amazement, Jack climbed up, sat down and sat still for his haircut. Ms. Barbara said, "Who is this? Where did Jack go?"