Sunday, November 29, 2009

Hello pink eye!

Just cleaned out his eyes so you can't really see it all that well.

It's just part of the "sharing" that happens when little people get together. We had a great time visiting with everybody. Jack's not miserable with it so that's awesome.

We called the doc & we'll start an antibiotic today.

Saturday, November 28, 2009

New Beginnings

Hey, what's Jack looking at?




It's a flower shop? Why would Jack be going to a flower shop?

Because this lady,

Jack's sweet Aunt LeLe, just became co-owner.

Look what we found inside.....
It's the fireman's prayer. Jack was in his fireman raincoat and rain boots and thought it would be really cool if he got his picture taken with the fireman's prayer. See how excited he is?

So maybe I jest, just a bit. :)

We are very excited for Jack's Aunt LeLe though.

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

Friday, November 27, 2009

Happy Black Friday!

We missed the mad shopping rush. We were busy jumping!

Hope that those of you that braved the crowds found it worth your while. :)

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

Thursday, November 26, 2009

Wednesday, November 25, 2009

Happy Thanksgiving!

Mr. Turkey is back again to say Happy Thanksgiving!  I have so much to be thankful for that there's no way I can list it all here. So instead, I'll focus on the wonderful daily reminders I have of my blessings.
I'm thankful for:
1. this guy

video

that continues to grow and develop
(* I don't know why but if you watch one of these videos you have to refresh your browser window before you can watch the other. The second one is totally worth it so go refresh you browser.)
AND knows how to make his Mama happy,
video

2. five beautifully seperated fingers on each hand,

3. five gorgeous seperate piggies on each foot,


4. VP shunts that keep pressure off the brain,
5. machines that support nighttime breathing,
6. months away from the hospital, and
7. this guy
 who loves me, supports me and puts up with me more than I deserve .

Happy Thanksgiving everybody!

Other thankful posts:
10 Graces on Tuesday
We are Thankful
Give Thanks
Thankful
Not Going to Write About It

And don't forget to check out the latest installment of Life is Therapy.


Tuesday, November 24, 2009

Word(less/ful) and Special Exposure Wednesday--Not Behind, I'm Ahead

You might think that I'm a little behind because it's almost Thanksgiving and I'm showing you pictures taken at a pumpkin patch but not so I tell ya'! Just keep scrolling.

I've told you before that Jack likes to do his own thing and we have the most fun when I just go with the flow. Well, on this particular day, he wanted nothing to do with the beloved horse of last year. Instead, he was all about these picnic tables located next to the horsey swings.

Feeling the wood grain

We hung out there for awhile then walked past all the animals that the other kids were excitedly petting and climbed up into the loft of the barn where Jack decided to mess with me.


You missed me!



Missed again!



Okay, here you go!

After an upsetting simulated shoot out [every kid in the loft started bawling because the gunfire scared them including the very verbal 10 year old who said, "Stupid cowboys! I hate cowboys." as he sobbed.], we decided to head back outside and jumped on the hay ride to the pumpkin patch.

This was a self portrait that did not come out right but look closely! See? Jack has my eyes.


Another mom who was also solo with her kiddo took our picture in exchange for taking theirs. Her kiddo was a little more cooperative about looking at the camera.


Then we set off to find our pumpkin!

Put the camera down and come on!


Okay, here's your shot of me and the pumpkin.

On our way back to the car, we checked out the Christmas Tree selection. See? I told you I was ahead. Who else has Christmas Tree pickin' up on their blog BEFORE Thanksgiving?

I like the way this one feels.

I was tired so I let Jack drive home.*






*Yeah, right! It would be a dream come true for him. This kid is ALL boy. He really thinks he ought to be allowed to drive already.


Click to see more Wordless Wednesday, Special Exposure Wednesday, and Wordful Wednesday posts.


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

Monday, November 23, 2009

Life is Therapy--How to Get Started


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.

It occurred to me that there may be some people reading this series that may be very much like me and have difficulty with spontaneity and just plain old playing. You can see from my examples how the different things we do work on specific goals that a child needs to accomplish but you don't really know how to apply it to your situation or the things your child needs to work on. You need to be told exactly what to do and exactly how to get started. Don't worry! I get you. I AM you.

The very reason I created this series was to get some interaction and sharing of ideas going. If you have a specific situation or question that you'd like to see addressed, leave a comment with your question. I will answer--maybe even do a whole post about it--and others can see your question and answer too. You will be amazed at how other people's ideas and similiar situations will light a spark in your brain.

First things first. How do you get your kiddo to play the way you want them to so you can work on those goals that you and/or kiddo's teacher or therapists have set for said kiddo?

I have mentioned before the work of Dr. James D. MacDonald. He teaches you how to become your child's Communicating Partner. One of the most basic yet powerful things that I have learned from Dr. MacDonald is that you must first enter your child's world before you can expect him to engage you in yours. The world of children is fun and playful and imaginative not full of rules and set ways of behaving like the world of adults.

So, the very first thing you must do to get your child working on your agenda is to put your agenda aside for a moment. I know that seems counterproductive but I promise you that if you do it, you will wonder why you never tried it before.

Pay close attention to your child and how he/she plays. What is he/she interested in? What is he/she doing? Don't worry about whether he/she is doing whatever it is right. Whatever he/she is doing (that is socially acceptable behavior) is right. That's where you start.

Here's a short video that illustrates the difference between putting forth your agenda and joining your child in his chosen activity.

video
My agenda here was a pretty simple one. Jack needs to work on interacting with others more and doing more of a give and take kind of thing. I wanted him to splash with me.

Did you notice how I started out not paying attention to what Jack was doing and trying to get him to do what I wanted? It did not matter how many things I threw in that tub or how animated I was in saying "Splash!" Jack did not care what I was doing. If you think about it, he was actually copying my behavior. I did not seem to care what he was doing so he did not care what I was doing.

Jack was spinning Irish in the tub. Once I started singing about spinning, I had Jack's attention. Notice how he perked up? He then told me what to sing and then sang along with me.

Once I had his attention and said, "Splash!" he enjoyed splashing for a brief period*.

*Now let me say that I would have been able to hold Jack's attention a lot longer if I had been physically interactive as well as verbally interactive but I knew the camera was rolling and I was feeling like a bloated whale with stringy hair having a bad body image day and did not wish to be on camera.  

I entered Jack's world of spinning Irish and then showed him a next step of singing about it. He followed right along with me.

Other Life is Therapy Posts can be found at:
Introductory Post
Prepositions at the Park
Rainy Days

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.

What Upsets Me

My husband will tell you that I tell way too much of our personal business am a person who shares her thoughts way too much freely. It's true. I love to blog. I love to share what's going on in our lives and I love hearing about others who find themselves feeling much the same way even if our circumstances are different.

BUT some topics are just difficult to put into words. I mull over how I want to say things and I think about how my words will be interpreted. I even cringe at the thought of some of the advice I might receive.

Deep breath....here goes....

Everybody has rough days sometimes. You know those days when your kiddo is just "off", just not Mr. or Ms. Sunshine that everybody just adores. Days like those don't tend to happen when you can hibernate from the world either. In fact, what turns into a "rough day" may have started out just fine. There you are, surrounded by a hundred or more strangers on an airplane and "it" happens. Or, maybe you are out just doing a little grocery shopping when "it" happens. Or even just hanging out in your yard. "It" can happen anytime anywhere and there can be a dozen reasons or no reason at all. "It" is known by some folks as a tantrum. "It" is characterized by loud screaming from a child. Sometimes there is also thrashing about. The biggest definer of "it" is "it"s ability to attract so much attention to you and your child.

There's tons of advice out there on how to deal with "it". I am no expert handler of "it" and that's not what upsets me anyway. What upsets me is not so much "it" but how "it" causes my child to be percieved.

Jack is a late talker. He talks but he is not fully conversational yet and his words are difficult to understand. He has very obvious hydrocephalus. Even if you don't understand the term hydrocephalus, one look at him and you know that he has a very large head. These two things combined can lead to assumptions on the part of unwise people.

Those assumptions upset me. Jack wasn't feeling well last week only I did not know it yet. We needed to run by the grocery store after I picked him up from school. Jack loves to go to the grocery store. He likes to drive the "rocketship" grocery cart, he likes to get the free cookie from the bakery, and when we are done with our shopping, he likes to spend a few minutes running around on the pavement in front of the grocery store and the small little strip of stores attached to it. He does not like having to stop his running around to get in the car.

I prepared him as well as I could. I told him we were going to the store. I reviewed what we needed to do while we were there. I reminded him that he had a limited amount of run around time. I had him repeat me so that I could be sure he heard me. While we were in the store, I reminded him again. When we exited the store, I gave him another reminder. I did the 5 minute countdown.

Still when it was time to go, "it" happened. He started crying and yelling, "Play outside! Play outside!" and "Shopping!" and "Drive cart!" and some other phrases I don't remember now. I had to take a few minutes standing there with him screaming in front of the store before I could get him over to our car. When we reached our car, he continued to scream. He flailed his arms and would not get in the car. He is much too big and much too strong for me to manhandle into the car.

I did the only thing I could do. I stood there with him and waited. I waited for my oppurtunity to speak. I couldn't have out-yelled him. I reminded him that we were a team and I could see that he was having a lot of trouble but it was okay because I was there to help him. I felt good about the approach and it seemed to work because even as he screamed, he would reach for me to hold him. I prayed under my breath as I did my best to remain calm. Slowly very very very slowly he calmed down. He was still upset but he willingly got into his car seat.

In the meantime, I could not help but overhear the loud passersby and their comments that must have been meant for me to hear because how else could they have talked louder than Jack screaming in my ear? I heard a couple of "Oh, bless him he can't help it" kinds of comments, at least one "needs a good spanking" kind of comment, and one very much meant for me to hear because it was said over and over again while they were walking by and they were definitely out-shouting Jack "That is just sad. That kid. That is just sad."

Yes, it's true. At the time of the tantrum, I don't believe Jack was in control of himself and I agree that it was a very sad moment. Needs a good spanking? Just don't ask.

I don't believe that this was what the commenters meant. It makes me sad that Jack's behavior can make someone believe he is less capable than the brilliant little fellow he is. It upsets me that anyone would judge my child's intellect by his obviously upset behavior. Who hasn't seen a four year old have a meltdown in public? Do all four year old's who do such a thing get "Oh, bless him he can't help it."? And what about "that's just sad". Isn't it sad when any kid cries? Is there something particular about his cry that disturbs you?

So, in case you're wondering...that's what upsets me.


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

Saturday, November 21, 2009

Thank God and All of You

When I shot this video, Jack had been asleep for about 40 minutes. It's now been almost an hour and a half and he still doesn't need the Bipap yet. It's been weeks since he's been able to sleep at night for more than 30 minutes without the Bipap. Thank you so much for all your prayers. Our God is an awesome God!
video



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

Thank You

videoIt used to bug me that a local radio station started playing Christmas music BEFORE THANKSGIVING a few years ago. Not anymore. Thank you local radio station for the lulling music. We needed a nap.
*Yes he is dressed in his PJs still comfy play clothes. Doesn't he look adorable napping with Elmo?


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

Thursday, November 19, 2009

Dad's Helping Hands

Thanks everyone for your sweet concern for Jack. He stayed home from school yesterday. I had to go to work and left him in the very capable hands of his daddy.


His daddy is a nurse after all, right? I'm sure all you ladies understand me though when I say that I was still concerned and wished that I could stay home to take care of my little guy.

I shouldn't have worried. I came home to find that Dave was not alone in taking care of Jack. He had help....



They wiped his nose and told him stories....


then they cuddled him off to peaceful slumber....


and kept watch while he slept!

Thanks, Rachel! Who knew when we won the Snow White prize pack that these guys would be so needed?

Thanks for all the prayers. Jack is feeling much better and back at school today. :)

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

Tuesday, November 17, 2009

Word(less/ful) and Special Exposure Wednesday--The Seven Dwarves of Ear Infection

A couple of days ago I sent out an email asking everyone to pray for Jack.

I thought that a medication he was taking was causing him to have hypersensitivies to sound. He had a complete meltdown when a toy he adores sang a song he adores. He sat there in joyful anticipation until the toy started singing.

Once it started, he made the face...if you ever see the face, you'll never forget the face, and you'll never want to see it again. It's the face of shock, of pain, of confusion...the face that occurs just before the gut wrenching, crying until he literally can't breathe and is getting choked on his secretions crying. It's awful and nothing helps. He looks so helpless as he cries out and in between sobs asks you to do things that usually comfort him but nothing helps until he is just exhausted from the effort and finally calms down. But afterward, little things can get him started again and it starts all over until at some point mercifully he gets to sleep.

Since I thought it was his decongestant/antihistamine/antitussive combination causing the problem, I stopped giving it.Turns out that was a bad idea since he actually had an ear infection but now I'm getting ahead of the story....without further ado, I present the Seven Dwarves of Ear Infection.....

This morning, I woke up to see
sitting up in his bed waiting for me to help him get his Bipap mask off. He was in an extraordinarily good mood. He was especially giggly this morning as he played with Elmo Live and I realized that he was actually repeating one of the jokes. As we got him ready for school, we practiced the joke so he could tell it to Ms. Sunny when he got to school.

When we arrived, Ms. Sunny and Jack's classmates were sitting together and talking. Jack became

and had trouble getting the joke out but once he did everybody laughed and I heard some of the kids repeating it to each other. (Why is six afraid of seven? Because seven ate nine!)<--Remember, this is 4K. This kind of stuff is still funny to them.

Just before his scheduled lunch time, we got the call from school, Jack started acting

so they knew that something had to be wrong. He is not one of their sleepers.
They took his temperature and, sure enough, it was 101 degrees so we got the call to come get him.

When I arrived, Mr. Daniel and Ms. Sunny told me that he had been a little

(I renamed this dwarf Cough-y) all morning. And sure enough, they pointed out the drainage seeping out his right ear. (ewww)



I took Jack home and he almost immediately
 laid down with Elmo.

He became quite 
when he realized that he would be paying a visit to


.

Diagnosis: Ear Infection
Cause: Constant sinus drip gets pushed back into ears by Bipap if not dried up using medication
Mom's reaction: DOH! What do I do?
That's when I felt


Our sweet family doctor took me quite seriously as I relayed Jack's hypersensitivity Sunday evening. You could tell by the look on his face that he understood and was not about to shrug off Jack feeling that way. He understood the problem too. We discussed the possibility that the hypersensitivity may actually have been caused by the ear infection.

Bottom line is that we really don't know and the only way to find out what is causing the problem is to experiment with different medications and see how Jack reacts. David and I talked it over and since he had been taking the new medication for a full week and a half and Dr. A thinks that it would only take 2-3 days of giving a medication to see a reaction, it was most likely the ear infection causing the hypersensitivity.

So...pray for us as we try to get the ear cleared up and the medicine sorted out.

Click to see more Wordless Wednesday, Special Exposure Wednesday, and Wordful Wednesday posts.

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

Life is Therapy--Rainy Days




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.

Have I ever mentioned that Jack is an outdoors kind of kid? So as long as there's no thunder or lightning, guess what we do when it rains?



You got it! We get our rain coat, our rain boots, and umbrella and head outside.

"But, what does that have to do with therapy?" you ask.

First, there's fine motor therapy involved in pulling on the rain boots, buckling the rain coat, and holding the umbrella. For those of you with children with typical needs, you probably just call this practicing getting dressed. :)
As you get dressed, it's a perfect time to expand your little one's vocabulary as you discuss all the different clothing items and accessories.


Don't forget the visual therapy of concentrating on looking at the cute umbrella Mama bought!

Once you've got all your garb in place, there's the gross motor therapy of walking around in all of it.

Sometimes it takes a minute or two to get your balance (physical therapy, anyone?)
But once you get your forward balance going, you might find yourself doing a few little tricks....



Like walking backwords down the inclined and wet driveway!


And of course, the sensory therapy of feeling your wet weather gear against your skin, feeling the rain on your hands, feeling the rain as it hits your best friend, and don't forget to stick out your tongue to catch some rain!



Stepping in and out from under an umbrella or building overhang is also a great time to learn the words wet and dry. If your child is visually impaired, the wet and dry and slippery surfaces provide an excellent oppurtunity for orientation and mobility practice.
So next time, it rains (and there's no thunder or lightning), get your kiddo all garbed up and head outside for some therapy.

If there is thunder and lightning, you can get in a little math while you stay safely indoors. Count the number of seconds between each crash of thunder and each flash of lightning.

Whether you're indoors or out, rainy days also provide a great oppurtuity to talk about clouds and how rain becomes rain. At school they call it science, if you're having fun with your kiddos at home, it's just called fun!

If you'd rather not get out in the rain, don't let it spoil your day, click here for some last minute rainy day activities or here for some last minute and some planned activities.

Other Life is Therapy Posts can be found at:
Introductory Post
Prepositions at the Park

***After last week's Life is Therapy Prepositions at the Park, one of Jack's former physical therapist's sent me the following tip:
Jack may enjoy a parachute (bed sheet, table cloth) to learn up and down. I'm sure kids at the park may enjoy it too and Jack will love the socialization. I've put balls with bells or balloons with bells on the parachute to make fun noises. Does this make sense? You hold the edges of the sheet and make parachute go up and then bring it down. The wind feels great!

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.

Sally says it all for me....




Thank you 5 Minutes for Mom for
Mom It Forward Award
and Jennifer for
.


I will be passing both of these awards along to other bloggers in another post but wanted to take a minute to to tell you thank you very much! It really means alot to me to be recognized by my fellow bloggers. What a supportive community to be a part of.

Friday, November 13, 2009

Life is Therapy--We're Moving!



Relax Dad and Nana and any other family member thinking "This is how I find out?" We as in we the series, "Life is Therapy", is moving. After this post, I am going to post the Life is Therapy series on Wednesdays Tuesdays [****editors note: I changed this to Tuesdays from Wednesdays after the post had been up for a few hours. Everyone who comes looking on Wednesday should see the post from Tuesday.] So those of you who are looking for Life is Therapy, please be sure to check back each Wednesday for ideas on how we can all challenge, encourage and inspire one another while helping our children develop to their full potential.

If you're not familiar with the Life is Therapy series, please see the introductory post here. There is one more thing that I want to be sure to say before I get to today's post. I do wholeheartedly believe that children learn most easily and most effectively in their natural environment in the course of their daily routines. However, any long term reader of this blog knows that I also wholeheartedly appreciate the work of skilled educators and therapists. It all works best when parents, educators, and therapists work together to help a child build skills. Rely on your child's therapists and teachers to help you identify both your child's strengths and weaknesses. Then find a way to incorporate those things into your daily routine. Be sure that you play mostly to your child's strengths and chosen pursuits.  This will cause your child to have lots of success and it provides internal motivation to continue when a task/activity is a bit more challenging, not to mention what it does for a kid's self esteem.




Speaking of a child's "chosen pursuits", have I ever mentioned that Jack loves being outside? So much so that I'm sure if he ever saw this post, he'd pack his bags and head to wherever Marlboro Man lives so he can be his son. So anyway.....

Anytime we can be outside, Jack is sure to be having fun and the more fun Jack is having the more he is paying attention and interactive. On a recent trip to the park, I stumbled right into working on prepositions with Jack. I say I stumbled into it because I had absolutely no thoughts of "teaching" or "working on" anything other than having some fun.

It all started as Jack went through the tunnel.


I said, "Jack through the tunnel." Jack repeated "through tunnel" as he made his way through. We repeated it back and forth a few times until he got to the end.


When he reached the end, I said, "Jack get out." He repeated "get out" as he stood up to get out. Then he stood outside the tunnel and said, "out". "Out" I repeated.

Next, he walked over to the tunnel slide and said, "I" as he sat down at the edge.


"In the slide," I said. We repeated this back and forth a few times and then

he stood up and said, "out". Hooray! He not only changed up the conversation a bit but he demonstrated great knowledge of the difference between in and out. After that he turned around as he said, "Down the slide!"


and "get out" at the bottom. Shortly after that, he peeked over the rail of the bridge.

Then we played on and off the bridge.


So, is your kiddo having trouble understanding all those in, on, off, over, under words (prepositions)? Head over to your local park and have some fun!

Notice that we also got in plenty of gross motor therapy with all the climbing, crawling, sliding, walking, and running we did. Jack also got plenty of orientation and mobility practice as he made his way around the playground, around the equipment, and around all the other people there. There was plenty of sensory input with all the running and swinging and sliding as well as the light breeze. There was some fine motor therapy too. There were rocks to pick up and sand to play in. Of course, working on the prepositions comprised our speech therapy. He practiced socialization by waiting for his turn on the slides and/or swings and making his way around and through other people on the playground.

More Life is Therapy:

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.

Not sure what would make a good link up? Here are a couple of posts that I found as I browsed the net. They are both good examples of life is therapy. Click here to see how Hannah found math very handy and here to learn how to help a child distinguish between two similiar sounding words.