All Access Pass to Jack

I was wrong

2012-01-20T16:34:00.001-06:00

I received a lot of wonderful and encouraging feedback on my previous posts regarding how to talk to your children about Apert syndrome and what I want to do to handle the "mean people" out there who choose to make fun of Jack. I even wrote a magazine article about it. After a little bit of time and much thought, I have realized that I was wrong.

I have repeatedly said Jack is just like other children. Huh? What was I thinking? Jack is unlike any person (child or adult) I have ever known. He is truly unique. He doesn't fit into any broad sweeping categories like 6 year old boys, kids with special needs, kids of second marriages, kids with visual impairment, kids with fine motor impairments, kids with speech delay, kids with VP shunts, kids with older fathers, or kids with craniofacial disorders.

Jack's interests are scattered across a variety of topics. He can name all the planets in our solar system in order of distance from the sun. He loves to watch YouTube videos of fire trucks and ambulances. His best friends are a basketball named Irish and a red, furry monster named Elmo. He even made up a song last night. The only line I made out was "doo doo doo Elmo's best frieeeeeeeeeeennnnnnd". He loves listening to books on tape with classical music playing in the background. He loves all kinds of animals on a video. The zoo, on the other hand, is a place to ride the train, ride the carousel and "walk on porch!". He loves having other children around and hearing the noise of other children. He wants to interact with other people more and more but probably not as much as your kid does. He still prefers to interact with adults rather than other children. He doesn't like candy. No really. People think we don't let him have candy but he truly doesn't like most candy. He is not a big fan of cake. Again really. I am the mom at the birthday party saying, " Come on. Just try one little bite. I think you'll like the cake." He can figure out short cuts on a computer keyboard that I do not know and cannot repeat. He knows how to operate an ipad better than his dad. (I've learned quickly so one of us can keep up with Jack.) He's being using the potty since he was around a year old (I think, hard to remember because it's been forever) BUT he doesn't consistently go by himself so at 6 1/2 he's back in a pull up to reduce household stress and anxiety over this issue. He'll eat just about anything if it's the right texture. He'd rather have Cheerios and dried fruit than cake or candy. He remembers the things we said and games we played back when he was an infant. He has a knack for knowing when people are truly interested in him as a person. He likes to learn how to say things in other languages yet he still has difficulty expressing himself in English. His favorite place in the world is squished between his dad and me.

Jack had a lot of setbacks during his "crucial" early development years. He is simply not developmentally ready to do things that other children his chronological age do. Jack is a problem solver. When he is ready to do something, you can waste your breath telling him he's not going to do it but it won't change his accomplishing his goal. He's just not ready for whatever reason to do things that his "peers" are doing.

What is this obsession with being "just like" everyone else anyway? We, as a society, seem to thrive on being alike. We judge other people's actions based on our own personal experiences. We all tend to drive the same or similar cars. We run after the latest trends because we don't want to be the only ones left out.

What's wrong with being different? Nothing you say? Exactly. There's nothing wrong with being different. If we believe God created each of us and has a plan for each of us, shouldn't we celebrate our uniqueness? Shouldn't we be talking about how unique we are?

I was wrong. Jack isn't just like your kid. He's different. He's unique. He's not like anyone else. God has a special plan for him just like your kid. :)

MUST READ

2012-01-13T09:16:00.001-06:00

I miss blogging. I really do. I miss my bloggy friends. life is really really busy here and it's wonderful. I read something today that absolutely brought me to tears so I had to take the time to share it. http://momastery.com/blog/2012/01/13/on-gifts-and-talents-2/

2011-12-24T11:01:00.001-06:00

We've been homeschooling since last October and it's working really well for our family although we tend to stay very busy and occupied between work, school, home, and family.

2011-12-24T10:58:00.001-06:00

Sorry for the lack of posting here lately. Jack has been great. He's growing. He's developing. We have no major medical things going on. We're adjusting to spending our lives away from doctors and hospitals.

No More Gimmicks

2011-11-21T08:37:00.001-06:00

When Jack was little, I wanted to know what gimmick would make him enjoy tummy time and start crawling around. He army crawled a bit so then I was looking for the gimmick to get him to walk. I saw other children happily sitting in the little group circle for circle time and I wondered what gimmick would make Jack do the same. As he continued to grow but not talk I wondered what gimmick would make him start talking. Still I read, I ask other parents how on earth they got their kids to do this and that.

When I'm at my best, I realize there are no gimmicks or maybe there are but Jack and I don't need any. God is at work in Jack and through Jack. He has his own timetable. God's vision of Jack is perfect. And Jack is happy. He is happy to be who he is. He's happy to do what he can do. He's happy to test out his rapidly growing list of physical skills.

What Jack needs, what I need is relationship. I need to meet that little boy right where he is and relish and love that stage we're in even as I encourage him to move toward that next step. No gimmick will make life more fulfilling.

sent via the Verizon Network from my Blackberry

Late Entry into Thirty Days of Play Challenge

2011-11-17T00:11:00.000-06:00

We're late joining up but I'm excited to join Hands On: As We Grow and The Imagination Tree in the 30 Days to Hands On Play Challenge. You can read about it here and here. Every day, they take turns providing a play idea for us to try. We are going to put aside 15 minutes a day of dedicated, non-interrupted play.

At our house, we do "special time" at least once or twice a day but those are times when I promise to allow no interruptions and I allow Jack to lead the way in play. This will be a separate time of play where I will attempt to lead the way with a play idea.

I don't want to go all legalistic on us by going back and doing all the play ideas that have already been presented this month so I'm going to do the day 1 challenge of saying what I hope to accomplish in the challenge and tomorrow we'll dive in with the challenge for day 17.

From http://www.theimaginationtree.com/2011/11/30-days-to-hands-on-play-challenge.html:

Day 1:

Today's activity

Spend a little bit of time thinking about this challenge. What do you hope to gain?

Think about your child (or children) What do they really love doing? What are they good at? Their special interests? This will be really helpful as the challenge unfolds.

My answer:
I have a very simple short goal: to expand our play. We get stuck in a lot of doing the same things. Jack and I both tend to like things staying the same BUT we need some fresh new things to try to improve Jack's development and mine.

Jack loves to move, move, and move some more--run, jump, bounce, skip, ride anything with wheels. As Jack's speech continues to emerge, he likes to play with sounds, words, and phrases. He is most joy-filled when he has my full attention and we are playing together. He tends to be a "sensory seeker". He enjoys swinging, being squeezed tightly and spinning (himself, balls, pinwheels, wheels, and gears and anything else he can get to spin). He does not do much make believe or fantasy play except playing with Elmo.

I'm excited! Wish us luck and say a prayer as we work on expanding our play repertoire. I probably won't post everyday but will more likely do a recap every now and then of how things are going with the different challenges.

Here's my partners in play:

2011-11-11T09:36:00.001-06:00

Do you remember when the world was an amazing place full of delightful surprises every few minutes? It's fun to watch Jack grow and plan and work and work on his own objectives. He makes the most gains when he has his own goal in mind. Spinning a hot air balloon is quite the motivator. Who knew that this colorful little spinning thing would help Jack work on planning, estimating, and evaluating? When is a hot air balloon a speech therapist, a physical therapist, an occupational therapist, a teacher of the visually impaired, and a kindergarten teacher? Take a step back and just watch your kiddo during play. It's amazing!

2011-10-12T00:18:00.001-05:00

Wordless Wednesday

A Tough Phase

2011-09-15T10:16:00.001-05:00

Jack is talking more every day. It is very cool to get more insight into what he's thinking. He is very excited to share his thoughts and opinions with us.

Too bad his thoughts and wishes don't always align with those of his parents...enter the boundary enforcers...

Cue the ominous music...

Not getting your way or not being able to express what you want can lead to big enormous powerful feelings of frustration. Have you ever been extremely frustrated in a conversation with another person and just wanted to shake some sense into them or walked away from a conversation thinking you'd like to hit something?

No? Hmmm....well you're very lucky and probably not gonna get the rest of this post then.

Back to Jack...when he gets frustrated these days he starts swinging or kicking or both. And he's a very strong little boy. What's a Mom and Dad to do?

I have friends that spank for hitting. Dr. MacDonald of Communicating Partners recommends silent restraint as in your child loses his physical freedom yet does not get your attention. Supernanny would put the child in timeout I think. Still other people recommend reading books about hitting together. Other people recommend giving your child words to express their frustration or acceptable alternatives like punching a pillow. Patty Wipfler of Hand in Hand recommends restraining your child while calmly and firmly telling the child "I won't let you hit".

We've been in this phase in varying degrees of intensity for quite some time now.
We've tried all of these methods, yes all of them. What surprise that Jack needs an approach that is individualized to him!

I don't know what the answer is but I do know what I believe and what I want. I believe that Jack tries hard to do what is expected of him. I believe that Jack cares deeply for me, his mom, and for his dad. I know that he does not want to hurt us. I know that it's frustrating to not get my way or to feel that I'm not understood or that my feelings are not considered. I know that I want Jack to know that I am here to help him and guide him.

This morning, as his frustration bubbled over yet again, I looked right into his eyes as I restrained his arms and legs and said, "You know how Mama helps you when you are having a hard time riding your bike?" Jack was puzzled enough to stop wiggling for a moment and said, "Yes." "I am going to help you keep your hands and feet to yourself, too." My sweet boy said, "Okay" just before wiggling an arm loose landing a swat on my leg as he said, "watch shapes!"

*sigh*

Marie (mother of Jack, born May 2005)
Check out our blog at http://www.allaccesspasstojack.blogspot.com for glimpses into our busy life with a boy who is busy growing and developing in his own way in his own time

Happy Mother's Day

2011-05-08T11:00:00.000-05:00

Happy Mother's Day 2011! I hope all of you are having a wonderful Mother's Day!

Jack and David made me the most beautiful card:

My ever poetic and romantic husband also manged to find this card which surprisingly expressed just what he wanted to say:

And I received this wonderful surprise from my mother-in-law:

Psalm 37:4 says Take delight in the LORD, and he will give you the desires of your heart. (http://bible.us/Ps37.4.NIV) I cannot remember a time when I did not wish to be a mother. As a child, I remember thinking about what kind of mother I wanted to grow up to be. I truly believe that God put that desire in my heart and he fulfilled that desire over and above how wonderful I imagined it could be. He gave me this sweet guy

He made Jack persistent and from his persistence I have learned to have so much hope! He made Jack attention-consuming so that I would not multi-task my way through his life and miss the wonderfulness of each moment. He made Jack sweet and loving to provide me with even more of his love. I could go on and on.....

But God has also richly blessed me with a desire that I did not even fully realize that I had. In fact, he both gave and fulfilled the desire without me taking much notice of it. Did you see the card from my mother-in-law? It's the kind of card that a mother would give a daughter. It's the kind of card shared between two people filled with love for one another. There's nothing like a mother's love and I've privileged and blessed to receive that kind of love from my husband's mother. She's really not even his anymore :) She's mine!

2011-05-03T08:00:00.001-05:00

Last night, Jack was rolling around the floor and playing with his drum sticks. He had them crossed one over the other and suddenly looked up and said, "It's an 'X'." Excitedly, I said, "Yes, it is." and called Dave in to see it too. Jack continued in this way, making a y and a v unprompted. He tried to make a w and a z but realizing he needed more than 2 sticks he made those in parts. Then Dave prompted him to make a t and an I.

Kids are so amazing! Jack is a sponge taking in so much information and I love when he shares.

2011-05-01T14:58:00.001-05:00

Waiting for the train...

2011-05-01T14:31:00.001-05:00

Jack and Uncle Noah hard at work at the zoo.

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2011-04-30T12:12:00.001-05:00

The park bridge inspector is back. He just has a new mode of transport.

2011-04-29T22:25:00.001-05:00

I knew they wouldn't make it through the movie.

2011-04-29T22:12:00.001-05:00

The boys are trying to stay up as long as they can but their lids are getting heavy....

2011-04-29T22:07:00.001-05:00

Jack and his "best fwend" are enjoying a late night snack.

2011-04-14T19:47:00.001-05:00

Look who's cooking thanks to Grandma's wandering foot (that gathers the loot)!

2011-04-10T20:29:00.001-05:00

Shadow dancing...we were so slow to come outside today so we're makin up for it by staying out late.

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2011-04-10T18:26:00.001-05:00

You never know when you'll hear, "Okay, take a picture, achoo!"

2011-04-10T12:41:00.001-05:00

Mr. Two fisted 'peanut butter jelly' eater asked me to take his picture. I figured he must want y'all to see how cute he is today.

2011-04-09T17:42:00.001-05:00

My handsome dinner date has me at the BBQ place.

2011-04-09T12:52:00.001-05:00

Look who has decided he loves sprinklers.

2011-04-09T11:29:00.001-05:00

The swimming's good here in Weed City!

2011-04-09T11:17:00.001-05:00

Our pool and sprinkler mat shrank from last year.

2011-04-03T11:10:00.001-05:00

If you do not know Jack, you may not get the coolness of this picture. Jack is visually impaired with light perception in one eye and he's legally blind in the other. He does not have depth perception. When he walks (actually he usually runs) we encourage him to use his long white cane to help him identify curbs, drop-offs, things in his path. He gets better with each use of the cane. BUT you can't use a cane when riding a bike. As usual his ever adaptive self, Jack has learned to look out for curbs and use the bike itself to measure the distance to the curb. AND he has become quite adept at using his little non-bending fine motor impaired fingers and hands to lift the bike up/down the curb independently. Hope you are enjoying this beautiful day as much as we are!

2011-03-26T11:15:00.001-05:00

"Go trail, Mama, go traaaaaaaaiiiiiilll" is what I heard this morning. Translation-Take me bike riding over by the bike trail but I will most likely want to ride on the sidewalk by the school. In any case, you are going to hear this repeatedly until we get there.

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2011-03-21T13:13:00.001-05:00

Making it Look Easy?

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2011-03-20T14:56:00.001-05:00

Cheap mom's sandbox.

2011-03-19T14:08:00.001-05:00

2 hours later and he won't admit he's getting tired!

2011-03-19T12:32:00.001-05:00

Lunch break

2011-03-19T12:01:00.001-05:00

Taking Elmo for a ride.

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2011-03-19T11:43:00.001-05:00

No new wrap around sunglasses for Mr. Hard to Fit. Adaptation ideas, anyone?

2011-02-12T14:58:00.001-06:00

The skuut bike bit the dust today but, never fear, Spiderman is here!

Revving Up the Coloring

2011-02-09T06:04:00.000-06:00

Jack is not known for being a big fan of coloring but he is well known for enjoying playing with anything with wheels. I saw Vroom Vroom at No Time for Flashcards and it reminded me of a great idea a friend had given me to have Jack color with car crayons. I never found any so I was thrilled to finally get to try out the idea.

I already had candy molds that I used to make Jack dairy free chocolates back when we thought he was allergic to all dairy products. And I had some crayons that we had previously melted to make thinner and easier for his little hands to hold. I just remelted them.

Here was my finished product.

The truck, airplane, and train turned out best. Next time, I won't use previously melted crayons. I think I would have gotten better results. I also probably won't use the muffin cup liners. Last time I melted the crayons straight in the pan and that seemed to work better.

And a little tip....if you are messy like me and excess crayon is cruded on your candy mold, just boil some hot water and pour a little over the mold just where the crayon is stuck. It melts the excess and you just rinse it away. (That is okay since crayons are non-toxic, right?)

I chose the best looking ones to present to Jack.

We got a bit of zoom zooming out of them.

Jack wasn't really thrilled with them though and he has learned a grasp that works for him with regular crayons. I'm not sure that he could really tell what they were supposed to be except for me telling him because of his visual limitations. I do think that a visual child would love them though. So we'll be filing this away under creative gift ideas.

2011-02-08T17:14:00.001-06:00

Jack's first regular paper actual "dot to dot". He did not enjoy this as much as our chalk sticker dots and definitely not as much as the animated Ipad dot to dots but he did tell me the next number and held the crayon as I guided his hand to the next dot.

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Sorting by Color

2011-02-08T09:36:00.000-06:00

As I was scouring the web for ideas, I came across The Easiest Toddler Color Sorting Activity. I loved the simplicity yet effectiveness of the activity.

I do have construction paper and various colored pegs and what not around and could have done the activity just as laid out here but I decided to try it with Jack's light box hoping that it would help him to more easily distinguish the colors.

I pulled out the blue and red overlays,

the red and blue pegs,

and also the red and blue bowls*.

*Jack has fine motor issues and difficulty distinguishing colors so I decided to decrease the challenge a bit for the introduction of the activity. I pre-sorted the pegs into their correctly colored bowls.

Here's the set-up with the overlays side by side on the lightbox.

Here's what it will look like with two of the pegs correctly placed.

Jack seemed to have real difficulty with this activity.

I helped him place one blue peg in the correct spot to get him started.

He really acted as though he did not get what I was asking him to do. I previously mentioned that we were concerned that he might be color blind. At times, he seems to recognize colors in isolation but it's not 100%. Even though he knows color names now, it's hard to tell if he's not paying attention (looking at the object) or he just doesn't know the color.

Off to the web I went to try to understand why this task might be difficult. I found this comparison of what a person with and without colorblindness might see when looking at a color wheel.

See how similar the red and blue appear?

So the big question.....was the activity difficult because he just plain old wasn't interested or is he color blind and finds it difficult to distinguish the two colors?

And I wonder if using the light box and light box materials exacerbated the difficulty of identify the colors.....

I'll take any suggestions especially from those of you who are color blind.

Jack's Kind of Sensory Play-Vestibular

2011-02-06T13:01:00.001-06:00

When the trike tilts up on 2 wheels as you round the table, you definitely activate your vestibular senses.

Sensory Play

2011-02-06T12:03:00.000-06:00

I've seen this idea on lots of different sites and lots of blogs so I don't really remember exactly where I first heard the idea but here's our incarnation.

You need a large container of some kind.

We had this great cookie tin that our neighbor gave us last year. I chose it because the beans make a nice sound when stirred around in the tin.

Add your beans.

Select some small toys and/or prizes that will motivate a reluctant kiddo to reach in for the sensory play.

Bury your toys/prizes.

Hmmmmm......if you are like me and you run out of beans and your toys are not buried, add rice.

You can do surprise digging from here or you can make picture and/or word cards to give the kids a specific item to dig for.

I elected to make cards to encourage Jack to dig. I then labeled the cards with black marker and braille.

Since I had cookies in the "sensory tin", I waited until after lunch when the inevitable cookie request would be made. I explained that we were going to play a game to get his cookie.

I showed him the cards to show him what was buried.

Then I introduced the tin....

Hmmmm....I am not impressed.

He was a little hesitant to stick his hand in so I helped him move the rice and beans around hand over hand.

Got what I'm after!

Once he found the cookie, he was all done! Well, at least he did not fuss and did reach his hand in. I'll save our rice and beans in the tin for play another day.

Hodge-podge of Stuff

2011-02-05T16:15:00.001-06:00

First up, I recently discovered ABC Jesus Loves Me which has a nice preschool home school curriculum for FREE if you are looking for a specific plan to follow. We do not follow a regimented curriculum but rather work learning experiences into our everyday fun but the site has great information regarding handwriting. Then, a good friend recently introduced me to I Can Teach My Child. There are lots of fantastic ideas on that site! I combined ideas from these two sites to create our own no fuss handwriting practice.

Jack has found immense enjoyment playing dot to dot on his Ipad. When I saw a post on Christmas sticker letter dot to dots . I thought that the idea presented a perfect opportunity to capitalize on this new found enjoyment. It reminded me a little of the handwriting worksheets from ABC Jesus Loves Me.

So I combined the two ideas....
1. I used a highlighter and wrote out Jack's name at the top of a piece of construction paper.
2. On the bottom of the paper, I used the highlighter to draw three straight lines for Jack to practice.

3. I used sticker dots to create the start and end dots for the letters of Jack's name.
4. I used larger stickers to create the start and end points for the straight lines.

and added an idea or two of my own....
5. I put it on a fairly light colored construction paper so bright white or some other bright color would not cause Jack to turn away from it.
6. I put the "worksheet" on Jack's textured clipboard. Back when Jack was still receiving therapy through our local school system, his vision teacher gave us some textured contact paper that we put on a clipboard creating a textured writing surface to give Jack some sensory feedback when writing/coloring/drawing.
7. I used a fat piece of sidewalk chalk as our writing utensil. We have recently been enjoying chalk drawing together and I was hoping that this activity could be an extension of that.

We traced his sticker dot to sticker dot name hand over hand then we did the first sticker to sticker straight line hand over hand. The other two he did readily without any assistance at all. The entire thing took just a couple of minutes. He did not fuss one little bit and seemed pretty proud of himself when he was all done.

Next up, I had a "how-to" idea of my own. I have been trying to find something to put on Jack's jacket zipper pulls to make them easier for him to hold onto while learn to zip and unzip.

I saw this cute little charm on clearance for $2.

Most jacket zipper pulls have some kind of hole on them somewhere.

I attached the charm to the hole in the zipper pull.

He's still getting the hang of it but at least now hanging on to the zipper is not the problem.

Finally, I leave you with a picture of our favorite kind of "sensory" activity.....

We call it pile o'friends and if you look carefully, Jack is in there!

My Little Scholar

2011-02-02T20:08:00.001-06:00

I love books. My little guy has a burgeoning love for books.

Mmmmm....Chinese Food

2011-02-02T18:28:00.001-06:00

We drew me!

2011-02-01T16:02:00.001-06:00

I drew a circle and handed Jack the chalk. He drew the body. I drew the arms and legs. We did the hair together.

Hap hap hap hap happiness!

2011-01-29T13:51:00.001-06:00

He's running, jumping, climbing, riding, laughing! Two months ago, he would never have run up or down the hill without me holding his hand. Today, he took off running through the tunnel and before I could catch him he had run up the hill to the sidewalk. Sure, it's a safety concern but I have tears in my eyes. No wonder he's so happy! He can do so many of the things he has wanted to do for so long!

Beautiful Day!

2011-01-29T13:41:00.001-06:00

We're taking advantage of the gorgeous weather. Jack decided to ride his trike up to his beloved tunnel. It's actually been a couple of months since we've been here.

Heavy Work

2011-01-10T09:01:00.001-06:00

Add a bunch of stuffed animals to a toy tote wagon and you have instant heavy work!

FAMILY TIME!

2011-01-06T16:38:00.001-06:00

Christmas Wish on the Way

2010-12-30T08:27:00.001-06:00

Remember my Christmas wish of having a socially engaged little boy? This morning, David and I sat down to eat our breakfasts. Jack was busily playing and usually likes to play awhile before eating so I did not say anything to him.

He looked up from his playing and saw the two of us sitting at the table eating our breakfast. He came over to the table, pulled over a step stool so he could sit at the table with us and said, "Bwekfast. Sit down. Eat bwekfast."

The Face of Determination

2010-12-26T18:45:00.001-06:00

I don't know why he wanted that step stool upstairs but he was determined to take it upstairs.

Sweeper

2010-12-26T18:22:00.001-06:00

But hey, if he's going down there to sweep, that's fine by me!

Mischievious Newly Acquired Skills User

2010-12-26T18:20:00.001-06:00

To catch those up that did not know, Jack has recently learned to open door knobs and turn on lights completely independently. I turned my back for about 1 minute and he went down the stairs to the basement, made his way through the dark to the bathroom down there and was climbing in the tub when I caught him. Oh boy!

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Learning Fun on the Ipad

2010-12-26T15:32:00.001-06:00

Fine motor work, visual therapy, hand-eye coordination, concentration...this ipad is this mother's dream toy!

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M-E-R-R-Y CHRISTMAS!

2010-12-24T08:54:00.001-06:00

Santa wants this family to be active this year!

Merry Christmas Everyone!

2010-12-23T22:56:00.001-06:00

I am blessed that God sent his son to pay for my sins. As a mother of a little boy, God's sacrifice means more to me now than it ever did.

Merry Christmas!

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The Tree

2010-12-23T21:48:00.001-06:00

really is up now. Merry Christmas everyone!

Finally Got the Tree Up

2010-12-19T20:20:00.001-06:00

It's a Merry Christmas, Charlie Brown!

Christmas Surprises

2010-12-19T15:34:00.001-06:00

We were having fun stacking blocks which is pretty much a miracle in and of itself (it's a fine motor and visual task combined plus it requires being still a bit) and suddenly Jack looked intently at this block which was stacked on top and said, "I see a leaf." Just like that. This does not appear to be high contrast to me. I don't know how he made out the shape. He (of course) did not answer when I quizzed him on a couple other blocks. But then there were bricks on one block and a window on another and he did it again.

Oh how I wish he would tell me all that he can see...

Dreams Come True

2010-12-17T22:37:00.001-06:00

Jack fell asleep and I put his bipap mask on. He rolled over on his side and I whispered in his ear, "I love you." He gave a little sigh and said, "I love you."

All I Want for Christmas...

2010-12-16T09:28:00.000-06:00

David recently asked me what I wanted for Christmas. My answer? Peace on Earth and good will toward men.

And without being there and having the nonverbal communication portion to know, you are left wondering, "Was she serious/being sarcastic/just kidding around?"

Somewhere along the road of development, you developed a desire to communicate with others. You learned that you had to share attention with another person both to understand and to be understood. Part of that attention sharing meant being aware of non-verbal cues provided by your communicating partner. You began to recognize changes in tone, volume, facial expression, and other body language and it helped you to derive meaning in addition to the spoken words.

You can have a conversation with someone without paying attention to any of the cues/clues listed above. But you are not likely to make your communicating partner feel well understood. Nor are you likely to derive the kind of joy that comes from two people really spending time together.

Jack still has issues with attention sharing. He is paying more attention to others these days but I can't help but wonder if his vision (or lack thereof) is playing a role in inhibiting him from picking up subtle (and some not so subtle) social cues.

So back to the original question...I actually would like to see peace on Earth and good will toward men but don't really expect all of that this side of heaven. What I really would love to have for Christmas is a socially engaged little boy who delights in sharing attention with others.

Jack progresses daily and I expect to see my Christmas wish come true but maybe not this Christmas...
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Shopping Really IS a Pleasure

2010-12-10T20:03:00.001-06:00

We had to go to our local Publix tonight--Friday night. Friday night means a crowd and a whole less likelihood of getting one of the coveted rocket ship driving carts. Ah well, I figured Jack would get to work on his orientation and mobility skills and I would get to work on my patience. Little did I know what wonderful things would happen...

Waiting in line at the pharmacy....
There was a little boy about 2 or 3 years old driving one of the rocket ship carts. Jack walked up and said, "Baby, hi baby!" The little boy tried to stand up and Jack said, "Sit down baby" while reaching for the errant little one.

At the bakery....
Bakery worker: Well, hi there! What can I get you?
Jack: Choklit chup coookee peas
Bakery worker: Chocolate chip? Sure! What a polite handsome young man (hands cookie directly to Jack)
Jack: Pank koo
Bakery worker:(smiling broadly) You're welcome. Y'all have a good night!

Going down the aisle:
Another customer remarked how precious Jack was and asked his name. I asked Jack to tell her his name. Jack: "Handsome!"
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Picnic Table or Boat?

2010-12-08T19:09:00.001-06:00

Jack's ship came in! [Or his picnic table has been turned over]. He is now the captain of his own course!
It's amazing to see the ideas kids come up with.

Stocking stuffer question...

2010-12-02T15:02:00.001-06:00

My neighbors are either going to
A. Thank me for the warning them that Jack is zooming down the street
OR
B. Wonder what the heck I was thinking putting that kind of racket into his hands.
Which do you think it will be?

Rough Patch

2010-12-02T10:51:00.001-06:00

We've hit a rough patch here at the All Access Pass to Jack household....this adorably handsome young man is very strong willed. That strong will has kept him going through so much in his 5 years of life thus far. On the other hand, because he is only 5, he does not yet understand the many reasons that a person might be required to do something that he does not want to do right at that moment or that whatever he wishes cannot be granted at the moment of wishing.

For instance, why can't he go outside as soon as it occurs to him he'd like to go? What on earth can I mean saying things like we need to get dressed or we have other things to do right now?

And how, oh how, can I expect him to stop playing to brush his teeth? Surely, I'm not serious!

There goes the power bill...

2010-11-29T17:27:00.001-06:00

He just does things on his own time table, ya know? Until today, Jack's light switch fascination meant he would drag you over to the appropriate light switch and tell you, "Light on."

We showed him how to do it himself. We would lift him and let him do it. Tonight, he decided he didn't need any help. He marched over, said "Light on" and switched the light off and on and off and on and off and on and....

Yesterday, he opened a door all by himself for the first time. What will tomorrow bring?

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The Library

2010-11-28T08:45:00.001-06:00

keeps expanding. It just makes my heart happy. We have a diverse collection of print-braille and print books. I've got a long way to go before I get all of Jack's print books labeled with Braille but it is so worth it when I see his fingers feel for the bumps.
How do you organize your home library? How do you decide when it's time for an old book to move on to new little hands?

Persistence

2010-11-27T18:39:00.001-06:00

Happy Thanksgiving!

2010-11-25T10:36:00.001-06:00

We have so much to be grateful for but, more than anything, I am grateful to our wonderful heavenly father who knew each of us before we were formed and created a good plan for us, giving us a future and a hope.

Jack has had some struggles in his life thus far. And there has been pain--physical and emotional.

Yet, how sweet is that smile? He is the most persistent person I know. Yep, God has a plan. I don't know what it is and I don't understand why it has involved so much pain and struggle so far but I trust that it's good.

K is for Cookie

2010-11-22T09:34:00.001-06:00

Well no but sometimes C and K make the same sound. It can be confusing. We gave him credit and he got those cookies he requested after spelling it correctly with a C.

Guess Who Came to Dinner?

2010-11-19T20:06:00.001-06:00

He's stepping up his imaginative, social play to new levels!!!

Bridge Inspector

2010-11-19T12:23:00.001-06:00

Yep, these are well-spaced.

Time for Math

2010-11-15T19:34:00.001-06:00

I had three cookies. I ate one. How many are left?

He really did count when I asked him ;)

Depth Perception

2010-11-15T12:39:00.001-06:00

When you have light perception in one eye and varying vision that tests at 20/320 in the other, figuring out how far away things are from one another can be challenging. Fortunately, the long white cane helps Jack measure distance and helps him to stay safe.

5 year old Boys

2010-11-14T12:56:00.001-06:00

Get their "climbies" out where they can!

Exploring the Back

2010-11-14T12:54:00.001-06:00

Hangin Out in the Truck Composin

2010-11-14T12:52:00.000-06:00

Jack LOVES our (new to us) truck. He loves it so much that we were playing outside and he asked me to open the truck and get in. I thought he just wanted to play drive. Unh uh. He hopped in the back and asked for his piano so he can work on his symphony.

Skuut bike riding=Pre-writing Skill

2010-11-13T13:09:00.001-06:00

Look at the grip on the right side. In order to effectively ride the bike Jack has to hoild on to the handlebars. Holding on to the handlebars increases his grip strength. Increasing his grip strength prepares him for holding a crayon, pencil, pen, or stylus.

It's a beautiful day. Take your kids out, enjoy the sunshine and work on their pre-writing skills!

Pinch me!

2010-11-12T19:20:00.001-06:00

Jack's riding a real bike (w/training wheels) and asking for something from a store!!!

Skuuting Along

2010-11-11T16:35:00.001-06:00

through our favorite tunnel.

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Sweet Relief

2010-11-11T11:50:00.001-06:00

When those teeth come in, they hurt! I'm not sure if Jack's got "adult" teeth coming in or if these are still some of the late missing "baby" teeth. Either way, they look they are pushing on the teeth he has. We'll be going to the dentist. It's one medical professional we've sort of put off. After all, he's seen just about everybody else.
In the meantime, vibrating teething toys will be chewed upon while doing computer "work".

When He's Ready....

2010-11-08T18:15:00.001-06:00

He's ready and he just won't do it until he's ready. We bought this skuut bike a few years ago and Jack haltingly rode it a few times but tonight he's just ready...round and round he goes.

Trick or Treat!

2010-10-31T17:40:00.001-05:00

Buzz Light Year about to go trick or treating with his cousins in Georgia. He did not care one bit about "trick or treat" until I re-phrased it as "walking for chocolate."

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More Writing Fundamentals

2010-10-26T13:20:00.001-05:00

We try to incorporate fundamental skills into our day. Here's Jack strengthening his grasp--a skill necessary for both handwriting and brailling. He has to modify the way he holds things because his fingers are different than typical fingers. He loves dried fruit so he is highly motivated to get that fruit out!

Handwriting Fundamentals

2010-10-25T11:57:00.001-05:00

We don't know yet how much Jack will be writing versus how much he will be brailling so for now we are working on both handwriting and brailling fundamentals.

To be able to write, there are certain fundamental things you work on first. Straight line tracing is one of the first skills.

Jack is visually impaired so "tracing" a line has to take on a different look. Today I used wiki sticks to form two straight line "templates" for Jack to follow.

First I explained the activity and helped Jack to "trace" the line with his finger. Next, we used a fat blue (color of the day) paint marker to trace the lines.

The line on the left was done with me holding the marker and giving a bit of hand over hand assist. The line on the right was all Jack.

First Baseball Game

2010-10-24T15:24:00.001-05:00

Jack attended his first ever baseball game. His buddy Brock was playing and Jack's been talking about baseball so off we went to the park today!

Tunnel Riding

2010-10-24T09:01:00.001-05:00

It's good to be up and about before it gets too hot.

Morning Therapy

2010-10-24T08:22:00.001-05:00

We're out for early morning stair climbing and descending.

Roll Tide Baby!

2010-10-09T15:14:00.000-05:00

Well he's not a baby anymore but he'll always be my baby.

Jack finally rode all the way up to the tunnel and trail I've wanted to show him for ages. It's nice and cool on this 90 degree day and has AWESOME echooooooooooooes.

Please Pray for Natalie

2010-10-07T09:17:00.001-05:00

This is not about Jack but completely scary because it could be. Natalie has a craniofacial syndrome similar to Jack's. They share a craniofacial surgeon. Natalie was having her midface surgery--the one we thought Jack was going to need this fall. She began bleeding and required 13 units of blood in a 4 hour period. A body as small as hers only holds about 7 units of blood. It is a miracle that this little girl is still alive. A CT scan yesterday revealed two small bleeds in her brain. She is on a ventilator to assist with her breathing.

Please pray for Natalie and her family. Please pray for the doctors and nurses and various hospital personnel to have not only gentle, loving hands but also wisdom--wisdom to best care for Natalie and wisdom to prevent this from happening again.

Thank you.
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We LOVE our Deck

2010-10-03T11:46:00.001-05:00

Quiet time on a beautiful day....

I'd like to thank...

2010-09-26T19:19:00.001-05:00

Jack's uber safety conscious daddy, Dave, Jack's devoted teacher, Ms. Sunny, Dr. James MacDonald and the rest of the supportive communicating yahoo group and Sonic's go-go grape for bringing us this moment...

Mama: Here. (Rolls car on Jack's leg)
Jack: Car. (Takes car and gets on floor to lie down so he can watch it roll.)
Mama: Car!
Jack: C-car. Car starts with C.
Mama: Yes. Car starts with C.
Jack: Everybody sit down in the car.
Mama: Everybody sit down.
Jack: Stay safe.
Mama: Everybody stay safe.
Jack: (chuckles and continues listening to his recorder while rolling car)
Mama: (chuckles and grabs camera before she misses the shot)

New Cane More Confidence

2010-09-25T13:58:00.000-05:00

Jack has grown so much since we got his last cane that he was actually developing a habit of leaning over to use it. His new longer cane arrived this morning.
I was afraid he might not like this new cane because it also has a bigger handle. Jack has small hands and I was not sure how his grip on this new handle would be. Jack surprised me yet again. He grabbed his new cane and took off running AND swinging his cane from side to side with GREAT coverage on both sides of his body. He did not maintain good form the entire time but it was great to see that the extra length makes a great difference.

There's more than one way to clean up!

2010-09-25T12:18:00.001-05:00

Don't judge me! If you have not done it, I'm sure you've thought about vaccuuming your kid after a meal. FYI...it works!

Ear Plugs

2010-09-25T10:41:00.001-05:00

He doesn't like it when I put them in but he is tolerating them well. He worked one out when David was helping him with his bath the other night so today I made sure to tell him to leave them alone. He's doing good!

Boundary Tester

2010-09-19T11:19:00.000-05:00

I'm trying to help Jack realize all the fun he can have while staying in our yard. He's testing boundaries literally and figuratively.

Blessings in My Rearview Mirror

2010-09-17T18:02:00.001-05:00

Often when I look in my rearview mirror, I see blessings. I am blessed to be the chauffeur of a kid that continues to develop.

I remember when going to the park in the afternoon on a hot day took a lot more effort than throwing a couple water bottles in the car. I remember when getting Jack a drink was a lot more effort than unscrewing a lid and handing him a bottle. I remember when going anywhere meant enduring screaming from the backseat. I remember but those days seem long ago.

Home!

2010-09-16T17:11:00.001-05:00

We're home.

Jack missed his stuff!

Even More Great News!

2010-09-15T23:19:00.001-05:00

This has been a great trip with great news from Jack's doctors. This afternoon, Dr. Fearon said that he was very happy with Jack's MRI, the most recent sleep study, and our reports regarding Jack's development.

After much discussion, Dr. Fearon said that he felt that Jack could wait at least another year and perhaps longer before he has his midface surgery. He did say that he feels that Jack's midface will require more distraction (pulling forward) than most of the other kids because it is so retruded. He said that Jack will probably wear the RED a bit longer than most kids to get as much over-correction as possible.

Dr. Fearon said that the bigger Jack is the less complicated he thinks the surgery and recovery will be. Also the longer we can wait, the less likely Jack will need another midface surgery. We are going to wait as long as we can for this one. Dr. Fearon is a bit concerned about the Bipap preventing us from having as close to a typical life as we all could have. The truth is Jack being on the Bipap does make life a little different for all of us but not in such a way that we are ready to head toward a major surgery sooner rather than later and perhaps cause the need for another repeat midface surgery in Jack's future.

Dr. Fearon told us that sometime after Jack's midface surgery he will do another cranial vault to move Jack's brow bone forward to provide better eye protection. Other than that, he did not project any further surgical needs. That was also great news.

Now my friends, I have a few specific things I'd like to ask you to pray about.
1) In our most immediate list of concerns, we have been informed that because Jack had such a great sleep study back in August, Jack no longer meets Blue Cross Blue Shield's criteria for oxygen. We already had to pay out of pocket to get Jack's Bipap AVAP because Blue Cross does not even have a code to cover the machine. Now we are being told that we will have to pay the monthly rental cost for Jack's oxygen concentrator. Jack does not always require supplemental oxygen with the Bipap but when he gets a cold or has increased congestion for any reason, it is hard to keep his oxygen saturation up without the supplemental oxygen.
2) This next prayer request is more of a right now and over time prayer request. After the midface surgery, Dr. Fearon puts a nasal trumpet in the child's nostril to facilitate breathing during the most swollen state. Jack's nasal passages are VERY VERY narrow and there is a very real concern that a nasal trumpet will not fit. Please pray that the nasal passages will grow large enough for that nasal trumpet to fit in there when it is time.
3) Another prayer request in preparation for Jack's midface surgery--Dr. Fearon told us today that he has only had one child so far who required a tracheostomy after the midface surgery. She needed the tracheostomy only temporarily until the midface could be pulled far out enough for her to breathe. David, Jack, and I have worked long and hard to avoid Jack having a tracheostomy while still maintaining adequate oxygenation during sleep. We would like to continue to avoid it even temporarily. We discussed some options with Dr. Fearon. I am asking that you pray that God will give us and Dr. Fearon clear guidance in what to do when it is time to decide which route to take.

I had somewhat of an epiphany one day when I was worried about Jack and whether his "grumpiness" was just usual kid stuff or a sign/symptom of something bigger. If I truly believe that God is working out his plan in God's life then I also must believe that God will guide me as his mother if I let him. And I also have to believe that everything that happens in Jack's life works for his good even if I can't see it at the time. So y'all remind me of this little epiphany later because I believe God is faithful but, like the children of Israel wandering in the desert, sometimes I forget.

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Long Day of Appointments Part 2

2010-09-14T18:10:00.001-05:00

That last message sent before I meant it to.

Dr. Hung wants us to go ahead and get Jack fitted for some ear plugs too. He wants Jack to wear them even in the bath tub.

Dr. Hung said if these measures don't stop the infections he may remove Jack's ear tubes and replace them with a tube made of a different material. He said that some people actually react to something in the tube that creates these chronic cycles. Also, he said that the tubes themselves are probably colonized with bacteria and taking the tubes out and rinsing the ears with an antibiotic solution may take care of it all.

We were encouraged that he seems to believe that we can resolve this chronic cycle medically.

Our final appointment of the day was with Dr. Price, the neurosurgeon. We got good news there too. She was very happy with the MRI. She had it all ready for us to review. There is a remarkable difference between 2007 and now. The ventricles are so much smaller. Compared to last February, the ventricles are slightly smaller. Jack's head circumference is exactly the same as last February but he is 18 month's older so the gap between Jack's head circumference and the growth chart is getting smaller. Jack has no chiari malformation (a condition which occurs when increased pressure causes a portion of the brain stem to be pushed into the spinal canal). All of this means that Jack's VP shunt is doing it's job.

Jack still has a large cranial defect on his right temple. Dr. Price says that she may close that up in a future surgery but she does not feel that it is necessary to do surgery for that alone.

We'll see Dr. Fearon tomorrow and get his take on everything.

It's been a long, tiring but very good day.

Jack was so great with the whole day. He said he wanted chicken for dinner. We stopped at the first chicken place and got that big boy some chicken.

Long Day of Appointments Done

2010-09-14T17:32:00.001-05:00

We're all very tired but also very encouraged. Jack recovered quickly from the anesthesia this morning. He was up and running within an hour and a half post procedure. The intubation (and extubation) did not seem to bother him a bit.

Dr. Hung, the ENT, was very encouraging. He wants us to try using Atrovent nasal spray again to help dry up Jack's secretions. We can give it several times a day or back off to once every few days--whichever works best to help decrease the secretions but not make them so thick that they obstruct his nasal passages.

He has given us more aggressive ear irrigation instructions and Jack will get another round of antibiotic drops to clear up his current infection (that we did not know he had).

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Tests Done!

2010-09-14T09:47:00.001-05:00

Jack has made us very proud this morning. He handled the vital signs like a champ. He got nervous just before being sedated for the MRI but when it was time, he kicked off his shoes, hopped up on the table, and took nice deep breaths from the mask just like we talked about.

We were a bit surprised that Dr. Davis, the anesthesiologist, decided to actually intubate (put a breathing tube in) Jack this morning. We like having all diagnostic procedures done at Medical City because Dr. Davis usually doesn't intubate. But Dr. Davis thought it was safer for transport from the MRI suite to the GI lab and thankfully Jack quickly recovered. He did not even need his Bipap after his procedures.

Jack's a bit woozy but he's up and around again.

We'll get Dr. Price's (neurosurgeon) impression of the MRI this afternoon. Dr. An said that the endoscopy looked good. He has sent off tissue biopsies and will call us later this week with results.

ENT appointment is next.