Thursday, February 25, 2010

I knew I forgot something...

Scary icicles over at Ma Vie Folle reminded me what I had promised to post and completely forgot. The SNOW. We had real stick on the ground snow a couple weeks ago. I'll just let the pictures tell the story.


















*Wow! I'm looking back over these pictures and having another one of those "Was I just not paying attention?" kind of moments! Jack is signing "wind" and "snow" in these pictures.

Wednesday, February 24, 2010

Sometimes we both cry....

I hope that my wise, sweet husband and amazing father to Jack is right. Jack was just really tired tonight. In retrospect, I'm pretty sure that he is right.

Jack cried that he wanted to watch more you tube videos but it was bath time and I cajoled him to the bathroom with the offer of a piggy back ride. But we got there and it all fell apart. He wanted to take a bath. He wanted Irish. He did not want to take a bath. He wanted to take a bath. He was all done. He took his socks off but cried about getting out of his shirt. He did not want to use the bathroom. He did not want to put on his PJs. He wanted Mama. He wanted Mama to go away. He wanted to sit on Mama’s lap. He wanted Mama to go away.

My mind whirled. What do I do? He will live if he doesn’t get a bath tonight but wait! If I let him skip this bath will it teach him that he can throw a fit and get out of doing things? Is this a fit? Is something wrong? Is he stressed? What does he want? I wish I could understand everything he says. What does he want? Does it matter what he wants? He needs to get to bed. He’s so upset. How will he get to sleep? Is something bothering him?

I finally got him calmed down and got him into bed. He drifted off to sleep and the evening routine of keeping him breathing while asleep began. Then Dave brought the mail and there’s a letter from the school. It’s time to figure out if he should go to kindergarten next year. It’s time to plan his goals for next year.

Jack’s oxygen levels began to drop. We propped him up on pillows. He coughed and sputtered from the ever present night-time secretions. He tossed and turned and rolled off the pillows.

My mind whirled. Should we give him Afrin? How many days has it been since his last dose? Why is he having such a hard time these past few nights? Should we go ahead and put the Bipap on? Is he recognizing the color black? Should we take a step back from potty training for a bit? Does he need B12 supplementation? Is he stressed out? What was he saying earlier tonight?

And I cried a hard cry like I have not had in quite a while. And I prayed. I prayed and cried. I am overwhelmed and I do not have the answers. I don’t even have all the questions yet. As I cried and prayed sitting there next to Jack’s bed, I remembered what I believe. I don’t have to have the answers and it is not all dependent upon me. God has a plan for Jack that I cannot begin to fathom. I will not always understand God’s plan and it will not always seem fair to me but that does not make the plan any less good.

Tuesday, February 23, 2010

The Blank Stare--Word(less/ful) and Special Exposure Wednesday

Compare this


with this


.


Obviously, it's the same kid. Look again. What are your impressions? If this is your first time here and you've never met Jack, heard about Jack, or read about Jack, that first picture gives a much different impression than the second picture.

The second picture shows a child who is engaged with the world around him. He's looking at something. He is reacting to something.

But what about that first picture? He is not looking at anything. His facial expression is somewhat blank. He does not appear engaged with the world around him. He just has a blank stare.

Jack has this look. It's hard to get on camera because I'm never thinking about the camera when I see it. I went back through several months’ worth of pictures to find that first one and it doesn't capture the look completely. The look is a blank stare. You might describe it as staring off into space--like his eyes are open but he does not see anything.

Often he is very engaged with the environment around him when he does this. He is just not engaged visually. He may be listening intently or tactually exploring.

Have you ever seen a video of someone who is wandering about in the dark before their eyes adjust? That’s the look!

I worry a bit because the look might make some people jump to conclusions regarding Jack’s intellect. At first glance, he might appear to be completely disengaged from the world. It takes effort sometimes to pay attention and figure out just what he is paying attention to.

It’s difficult to explain to people that Jack doesn’t always use his eyes. But that’s what it is. If I had his vision, I hope that I would find other ways to explore my environment too. Still, he’s not fully blind so to treat him as if he was totally blind makes no sense. He has vision and he uses it. He doesn’t have good vision though so it doesn’t make sense to treat him as if he can see the world like most of us. AND it’s hard to know just exactly what he can and cannot see. It’s hard to know if he is not using his vision because he really can’t see something or if he has just adapted to not using vision that is blurry/unfocused.

Back in this post [editor's note: How ironic! That post was written one year ago today.], I said that I cannot wait until we’re on the other side of Jack’s vision issues and have things figured out. Well, we’re still on this side of figuring things out. I’m not crying for the lack of vision anymore but we still don’t have a solid plan and I still feel like we’re fumbling around in the dark trying to figure out what part his vision is playing in Jack’s overall development and what we should or should not be doing as far as adapting his school work and his environment.


Do you know someone who is legally blind and has vision of 20/300 at best? I’d love to hear from someone who sees like Jack sees.

Don't forget to check out yesterday's Life is Therapy post where you can learn why boring is good and link up your own Life is Therapy post.


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

Boring is Good

Nobody likes to do the same thing day after day after day, right? No, wrong. We'll get to that in a minute. First, 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.

Children actually do love to do the same things over and over again in the exact same way. That's why many, many parents complain that their heads will explode if they have to watch [insert friendly TV character from kids show] ever again. It's the same reason that night after night after night, kids choose the EXACT SAME book to be read as a bedtime story. That's why they ask you to read the book AGAIN as soon as you finish.

But this is so boring! Why? Why do they do it? Are they trying to drive us nuts? Make us go crazy? Yes! It's all a plot that they have all devised to bring us parents down so they can take over and eat all the candy they want. Of course not. Children just like to know what to expect. As adults when there is so much mundane routine to life, it's hard to remember that everything is new to children. They are constantly bombarded with new information and new abilities that they did not know they had.

Routines, repetition, and sameness give their world stability. When you are reading Brown Bear, Brown Bear what do you see for the fortylevenmillionth time, your child knows the next line is I see _________ looking at me. It's comforting. It helps them to feel confident that there are some things about this great big world that they do know.

AND when your child is able to draw upon that confidence, you will see them dare to do a little more.

For instance, Jack is a late talker. At 4.75 years old, he talks in mostly two to three word phrases with occasional longer phrases thrown in. But when mealtime comes, he can say an entire 22 word prayer with very little prompting/assistance. In fact, he begins by telling everyone to put their hands up, hands down, hands together. I know, "It's a miracle!" Well, yes, but it's a miracle brought about by the God given gift of routine. We say the same prayer the same way at EACH meal and it is the same one that they use at his school. Because David and I followed the school's lead and used their prayer, Jack was able to know what to expect at each meal. He ventured out a little at a time growing confident with each attempt and as the routine continued he said more and more until he did the whole thing. He even lead our small church in prayer one Sunday evening. He needed a little more prompting that time because it was a bit out of the norm but the prayer itself was so routine for him that he was able to apply it to the new situation.

So the next time, you think your head might explode by your child's insistence on doing something exactly the same way AGAIN remember he/she has a great big world to learn about and this is one way of making it all manageable.


Recent Life is Therapy Posts can be found at:
TV is NOT the Enemy
The Grocery Store
Know When to Stop

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 link to the specific post in the Mr. Linky below. If you don't have a blog just leave a comment with your life is therapy story.

Sunday, February 21, 2010

Back in Time for the Circus!

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Last week, at Jack's school, they had a circus theme. They made cute clown masks.


Some of the kids' masks were a little more elaborate than others. I was really proud to see all the coloring that Jack did on his mask.
To see other's Magic Marker Monday posts and to link up yourself, click here.

Last week's Life is Therapy asked you to re-think how you "view" tv. You can check it out here. There are more Life is Therapy posts listed in the left side bar.

Wednesday, February 17, 2010

Will Return Monday, February 22, 2010

Do not be alarmed. We are experiencing technical difficulties here at Jack's house and will be taking a short hiatus to sort out the difficulties and get caught up on work and home stuff that has fallen behind due to these technical glitches and the time it takes to fix them.

In the meantime, please pray for Jack to get rid of this persistent ear infection. He is on week 2 of his oral antibiotic after we learned that the bacteria does not respond to the ear drop antibiotics he was getting. And on top of that, he has managed to catch a cold. His nighttime breathing continues to be well managed with his Bipap AVAP, Afrin, and his antihistamine/decongestant combination. Thanks for checking in and we'll see you back here next week!

Check out the left side bar for our Life is Therapy Series!

Tuesday, February 16, 2010

TV is NOT the Enemy

Yes, I said it. TV really is not the enemy. But before we get to that--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.

I know. I know. There are all kinds of studies out there that say that tv viewing is bad for children. I completely agree that plopping your child down in front of the tv (no matter what the program) for loads of unattended time is not good. Watching Baby Einstein videos alone will not make your baby an Einstein.

But TV and video viewing can be a great time for you and your child to interact and learn about things outside your world and even take a different look at everyday things around you. This is true whether your child is 4 or 40. The important part of the equation is you. Join in your child's tv/video viewing. Talk about what you see on the screen. Talk about your values. Talk about how you would have done things differently or the same as the characters. Act out the different character's parts together with your child. TV/video viewing can be a great bonding time.



Jack is a late talker. He is still trying to figure out how to tell the rest of us the many thoughts that are floating around in his head. His DVDs have been a great springboard to communication and a better understanding of the words he has been saying. When a triangle is on the screen and Jack says "Try ay kul", the light bulb goes on and suddenly that word he's been saying makes sense!

Children in the early stages of talking often have difficulty holding conversations because they don't know what they are supposed to say. They have to think about what you said, think of the words they need for a response, and then get their muscles working together just right to form the words that are needed. Playing out the storylines from videos are a great way for children to practice turn-taking speech. One of the hardest elements of conversations has been eliminated--coming up with the words. It's predictable. They know what you are gonna say and they know what they are supposed to say. It's a confidence builder and a great way for a child to learn to practice waiting for the other person to take their turn in conversation.

Instead of bemoaning your child's love of that flashing box, try joining them for a bit and see where it takes you.
Recent Life is Therapy Posts can be found at:
Try Something Old
Know When to Stop
The Grocery Store
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 link to the specific post in the Mr. Linky below. If you don't have a blog just leave a comment with your life is therapy story.

Sunday, February 14, 2010

Kaboom! Painting

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I've recently become concerned that Jack might be color blind in addition to being legally blind. When you ask him to pick a specific color, he won't do it. If you ask him the color of something, he usually does not respond.

But it could just be that he doesn't know his colors yet. Jack's "itenerant teacher" (she's the case manager/teacher that he gets twice a week through our local education agency) came up with a plan to teach him his colors. The idea is that he will be "immersed" in a certain color for up to two weeks at a time. We won't ignore the other colors. We will just try to plan activities for Jack using the "color of the two weeks". She has a list that shows which colors kids tend to recognize first. If Jack shows true recognition of the "color of the two weeks", we will move on to the next color on the list. If Jack does not know a particular color by the end of a two week period, I think we'll have a clue that somethings up.

The first color is black....

The new program is supposed to start this week at school but I decided to get a jump on things this weekend with a little Kaboom! Painting.


What is Kaboom! Painting? Well, you take a paint brush covered generously with the paint color of your choice (black for us) and you slap it on the paper while saying the ultra fun word "Kaboom!" only you say it more like "KAAAAAA BOOMMMM!"

After you finish your Kaboom! Painting, you will have an item fit for a rorshach test but if your kiddo is a little resistant to art, Kaboom! Painting could be just the thing to get them to see that art can be fun! This worked so well with Jack that I tried to slip a little coloring into the mix. I grabbed a crayon and handed it to him for the next "Kaboom". He looked at it funny but was still willing to do it. But as soon as crayon hit paper, he said, "All done. All done. Trick. All done."


Well, at least, he did make the one mark.


To see other's Magic Marker Monday posts and to link up yourself, click here.

Yes they did!

videoMy fellas gave me chocolates roses (one from each) and this wacky guy for Valentine's Day!
Happy Valentine's Day, everybody!

Yes I did

let Jack eat breakfast sitting on the floor with his tray. Yes, that is his DVD player plugged in so he can watch a movie while he eats.

My former self would shiver at such an idea. But my former self did not know how delighted she would be to hear the words "Watch movie", "Sit on the wood", "Eat cereal", and "No. Over here."She did not know the excitement that would come from watching Jack try to carry his tray nearly spilling cereal all over the place so he could get closer to the movie player.

My former self was totally missing out!

For tips on how to make your next grocery trip accompanied by your child more than a dull chore see this week's Life is Therapy at http://allaccesspasstojack.blogspot.com/2010/02/grocery-store-life-is-therapy.html.

Saturday, February 13, 2010

It's tempting

It's tempting to think that this sweet face has been through enough for a lifetime and should never ever have to cry BUT

everything he's been through was to save his life and improve his life

AND there are bumps on the road of development that make him cry along the way.

*sigh*

Wednesday, February 10, 2010

Sophie's Birthday--Wordless/ful and Special Exposure Wednesday

A few weekends ago, we all braved the cold and wet and headed to a local park for our little friend Sophie's birthday. Brrrrrr....the wind blew and we were ccccccooooold but kids alway manage to have fun in the outdoors.

We took full advantage of all the playground equipment

Plenty of time on the swings,
and climbing.
Sophie's Aunt Kristen even got in on the fun!
That's why call her Grace!

Do they look cold? Birthday girl is in the middle with the pink jacket, brown pants and pink rain boots.

Mmmm....birthday cookie!

Thanks for the invite Sophie and family, we had a lot of fun!

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

Don't forget to check out this week's Life is Therapy.

Tuesday, February 9, 2010

The Grocery Store--Life is Therapy

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.

I've been rolling around this idea in my head since I wrote about how much Jack loves Publix. Then Erin's cute post just reminded me how much kids get from tasks like grocery shopping that we consider quite mundane.

It's very hard to remember that the entire world is new and different to our kids. It's much easier for them to encounter things they've never seen before. Also, because they grow and get taller and a bit more independent at each visit, they see new things or old things from different angles and it is all amazing.

As Jack gets older and bigger (over the wieght limit for most shopping carts), he is being allowed a little more freedom to roam. I used our friendly neighborhood Publix where most of the staff know us as a good testing area for deciding when he was ready to first walk beside and not sit in the cart. It took a few times of trying it before he was truly ready since he would often try to break free and run.

Once he did show enough self-control to follow my safety instructions, grocery shopping became a wonderful time to practice orientation and mobility and physical therapy. With Jack's visual impairment, he is still adjusting to his lack of depth perception so he had to learn to guage the distance between him and any objects in his path and adjust himself accordingly. It is very easy for Jack to see something he wants to get to and develop tunnel vision (as in he only focuses on whatever it is and takes off toward it ignoring anything in his path). In the grocery store, there are other people and their baskets as well as display racks and sometimes stocking boxes to be avoided. Going up and down the aisles has been great for enhancing impulse control as well as remembering to focus on the immediate area to check for people and other obstacles to navigate.

The grocery store also supplies numerous oppurtunities for practicing speech therapy by labeling the many things available in the store. I usually allow Jack's level of interest to dictate the amount of labeling we do. One day I was getting a little frustrated because it appeared that Jack was just rooted to one spot moving his head up and down. After a deep breath, I watched for a moment and realized that he was actually looking at the vegetables but appeared to be trying to find a good angle to see them. When I slowed down, we had a delightful time, looking at, touching, smelling, and labeling the various fresh vegetables--speech therapy, sensory therapy, vision therapy, occupational therapy.

Since we frequent the same store often, we have really gotten to know the staff and they've gotten to know us so it is not at all uncommon for a staff member to come up for hugs and conversation. This is a great time to practice appropriate social behavior. Each time, Jack is more enthusiastic about interacting with the staff. He's actually much more interactive with other customers too. The familiarity of the people and the location makes things a lot easier.

So next time, you dread thinking of taking your kid to the store, see if you can slow down a bit during your shopping and enjoy the wonder that your child experiences. It will take longer to get through the store but I think the payoffs are awesome!




Recent Life is Therapy Posts can be found at:
What Happens at Home
Something Old
Know When to Stop



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.

Monday, February 8, 2010

Not All "Art Projects" Work Out

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So our post this week, isn't your usual kind of craft but hey it's crafty! *Sorry for the blurriness of the photos. My camera phone is having issues or my hand is wobbly--not sure which.

We had a special event to attend yesterday evening so I decided to "sculpt" Jack's hair with mousse and hair spray.
He knew he looked good.

That evening when it was bath time, I discovered something.

Short hair with hair product goes nuts when it gets wet! We decided to have a little fun with all that messy hair product hair. We had it sticking up in various places then I had a brilliant idea!

A Faux Hawk!
 
Or not....
Well, we tried...maybe more hair product next time?

To see other's Magic Marker Monday posts and to link up yourself, click here.

Don't forget to check out the latest Life is Therapy and come back tomorrow to leave a comment or link up with your Life is Therapy moments.

Wednesday, February 3, 2010

Popcorn is a Sedative

1 am Sunday morning I woke up to the sound--the sound that sets my nerves on fire, makes my heart race, my pupils constrict, and my palms begin to sweat. Jack was crying.

It took him awhile to calm down and then he did NOT go back to sleep. I even made him stay in a dark room and lie down for a couple of hours. I think he really tried but he just couldn't get back to sleep. And that means Mama did not sleep either.

I spent most of the day feeling like this

Jack spent most of the day like this
He happily worked on his symphony and enjoyed his various musical instruments, cars, and books. He was a bundle of energy. I had to find a way to get Jack to relax.
He began to slow down in the warm waters of the tub. He even rested his head on Irish. I thought he might actually fall asleep in there. Suddenly, he hopped out of the tub ready for more activity.

That's when I remembered this

Jack can be so very very sleepy but will not go down without a little snack first.


Yes, I did put him back in the same jammies after the bath. He'd only slept in them and we were not going anywhere. Sue me.

And at last, he began to act a little tired

He gladly accepted the offer of a pillow

And finally


Don't forget to check out this week's Life is Therapy.


Our Budding Maestro--Wordless/ful and Special Exposure Wednesday


He is gifted. He has no models at home. I would love to play a musical instrument but I have rhythm issues. And Dave...well, I think he aspired to play the guitar when he was younger...Jack has a natural gift for music. Percussion instruments were his favorite for the longest time but he has recently branched out to the lap harp, guitar, and keyboard. It's not random banging of the keys either. It's purposeful. He sits there tapping the keys and he'll lean in to listen to the sounds like he's just absorbing it all. It seems that each time he sits at the keyboard he expands his playing a bit. Maybe he's composing his first symphony?

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

Don't forget to check out this week's Life is Therapy.

Monday, February 1, 2010

Gotta Know When...

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.

Who doesn't get excited when a child surprises you with a new skill? And what kid isn't excited to learn a new skill? Most of the time kids are pretty excited to show off their new skills and we (their parents) are very excited to see them do it and will ask them to do it again repeatedly.

video

Jack has recently begun jumping with two feet off the ground. He was joyously jumping one evening and I was, of course, excitedly encouraging him. He did this over and over and over again. When suddenly I remembered that I needed to get it on tape so that I would be able to use it on the blog in order to preserve this precious moment for posterity.

When I reviewed the tape, it reminded me of something very important. Sometimes you gotta know when to stop asking for more more more more. Jack WAS having fun jumping and had been having fun jumping. Then I got the camera out and wanted him to perform even MORE so I could show off so all of you could delight in his accomplishments too because I knew that he would enjoy watching himself on video later. But really when the new skill is getting old or your kiddo is just plain old tired, give it a rest. The skill is not going to go away overnight and they'll be much more willing to do a repeat if you don't wear them out. So just remember, if it's not fun anymore and it's just a performance try backing off. You will get to see it again. Just give it a little time.

Jack's still jumping and getting better at it all the time. I'll get more video of it later when he's in a jumping mood!

Recent Life is Therapy Posts can be found at:
Going to the Movies
What Happens at Home
Try Something Old
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 link to the specific post in the Mr. Linky below. If you don't have a blog just leave a comment with your life is therapy story.

GHOST!

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It's an oldie but goodie! Jack made this ghost back around Halloween.

He made it a school. It's one of the crafty things his sweet teacher has them do. It's tissue paper that was folded over then a tie was added to make a head and then the bottom was left loose to form a body.

Jack loves this little ghost. When they sent it home from school, I initially hung it in the car next to his uber safe booster seat. He loved having it there and would say, "Ghost, ghost!" as he batted it around.

I guess Jack's real contribution to the ghost was it's face.


He seems to like red.

So, of course, the ghost was one of the first things I put up on the new craft wall I designated for Jack. In this shot, you get a two-fer--Jack colored that bear really well after I added some wiki-stix to help distinguish the border.


To see other's Magic Marker Monday posts and to link up yourself, click here.

Don't forget to check out the latest Life is Therapy.