Mini Me

*We've all been a bit under the weather here sorry for the lack of posts lately.*

As I was looking through some old pictures I realized that I have a mini me...yeah, I know everybody thinks he looks just like his Daddy but he really is MY mini me.


I present to you the evidence:

He's a multi-tasker

He loves to nap on the beach.

He's a messy eater

but he cleans up as well as he can.

He may not understand all the ins and outs of Alabama football but he's a fan.

See? Mini Me!

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

First Movie!--Wordless/ful and Special Exposure Wednesday

As I mentioned yesterday, Jack saw his first full length feature film at the theater over the weekend.

So what did Jack think of his first movie?

Do you see the "Wow!" on his face?

It was very dark in the theater at first and he did not even register the screen. Once we got settled into our seat (he decided to sit on my lap) with his slushie and his popcorn, he decided to look up and I could not see his face but his head stayed perfectly still. I grabbed my phone and captured this picture.

He loved it! We saw The Princess and The Frog.

As soon as I saw the preview on our Snow White DVD, I knew that The Princess and the Frog would be Jack's first "big movie". The preview showed singing, dancing, and lots of different funny voices. The clincher was Disney's return to hand drawn animation for this movie. Hand drawn cartoons usually have the characters much better defined in the foreground with less detailed and darker backgrounds. In other words, high contrast animation!!!

Jack sat quietly and watched most of the movie. We had one seat change when he decided he wanted to sit on the very front row and I had to explain to him that he could not run up and touch the screen. At the very end, he got a little antsy but the remaining popcorn and slushie were enough to entice him to stay until the end.

Of course, once the movie was over he was

more than ready to run!

I did get him to stop and pose for me in front of the movie display

His face screams, "I can't believe you are making me do this!"

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

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

Life is Therapy--Going to the Movies

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.

Last week, I encouraged you to just get out there with your kiddos. In the spirit of my own post, Jack and I decided to try something that he had never done before.

Drum roll please....Jack went to his very first theater full length feature film!

Jack is already four a half and most of the kids I know that are his age have already been to a couple of movies by now. Friends of older children urged me to take him even though he would not sit through a whole movie in our living room. The theater is a whole different experience they assured me.

I mulled this over for a long time and asked for lots of other people's thoughts, advice and opinions before deciding to take the plunge.

Firsts are a big deal and who doesn't want their kid's firsts to be happy events?

To save you a little time, I've created this handy little guide for helping you and your child to have a happy first theater experience.

1. Settle in your mind that this whole experience is about having fun NOT watching the movie NOT being the perfect little movie-goer and NOT getting your money's worth. Be willing to walk away. Make up your mind long before you get to the theater that if you and the kiddo are not having fun you will leave and go do something else. Until you are ready to do this step, then I humbly suggest you wait until you are ready for this and then come back to the rest of it.

2. Wait for the right movie. Is there a character your child adores? Is there a particular subject that holds great interest for your child? Does your child have any particular needs that you must bear in mind when selecting a movie?

For example, Jack loves music, dancing, and funny sounds. He is also visually impaired. Things that are too visually "busy" can be overwhelming for him. It is difficult for him to distinguish muted colors from one another. Bold images on dark backgrounds are easier for him to see. He doesn't really seem to care for overly long or drawn out story lines.

It took me quite a while to see a movie preview that I thought was just right for Jack.

3. Be excited about what you are about to do! Your child will pick up on your excitement. You may find that before you even tell him what's going on, he begins acting excited too.

4. Consider snacks. Find out what is available at the theater you plan to attend and think about whether you want your child to have any of that. Most theaters have a "no outisde food" policy but they may make an exception if you call ahead and explain your situation.

Snacks can help encourage your child to stay seated if he is a wiggler.

Here is a tip that I did not think of until I encountered the problem at the theater. Make sure that you have a way to carry your snacks AND hold your child's hand as you walk into the dark theater. You may want to bring along an older child or another adult friend to help carry snacks while you tend to your kiddo.

Jack and I were solo but the snack people were very courteous and gave me a little tray to help me carry our snacks. After the movie, one of the sweet teenage clean up kids took the tray for me so I did not have to carry it back.

5. Prepare your child. Tell him that you have something exciting planned. Warn him that the theater will be dark and it may be very loud. Remind him that it is safe and you are going to be right there the whole time. Make sure to tell him how much fun you are going to have.

I did this repeatedly throughout the day when I finally made up my mind that we were definitely going. By the time we got in the car to go Jack was saying, "Dark movie" and "Loud movie" and "Mama stay you".

6. Go to a matinee. The matinees tend to be less crowded and offer a bit of a discount. Also, there are likely to be younger children with their parents. This is the crowd you want to be with. They understand first time movie going.

7. Try to time your arrival so that you miss the previews. Ask your movie-going friends how long the previews usually last or call the theater itself and ask.

8. As you drive into the lot, notice how long the ticket line is so you can again prepare your child and let them know that there will be a short or long wait before you go inside.

9. Just before you get your child out of the car review again what you are going to do. Remember your child is excited now and wants to get to the movie! For example, before we got out of the car, I reminded Jack that first we had to stand in line for our tickets, then we would have to stand in line to get our snacks and then we would go into the dark and loud room where the movie was and sit down and watch. I shortened each of these phrases considerably so that Jack could repeat them with me. Tailor your spiel to your child.

10. Here's an excellent tip that I was not able to use. If the theater is not crowded, place your coats over the seats directly in front of you. Most children have difficulty sitting for the whole movie their first time in the theater. If you put your coats over the seats, no one will sit there and your child is less likely to inadvertently disturb other movie goers by getting up and grabbing the seat in front of them. This way you can talk about movie etiquette without disturbing others.

11. Sit at the end of the row. This way if you have to leave either for a potty break or because your kiddo needs to walk or whatever you will not disturb others in your row as you make your exit.

12. Do not expect your child to be a perfect angel. He's not an agel at home so why should he be during this new exciting experience? He may talk a little too loud. That's okay. Just encourage him to talk in a quieter voice or hand him some more popcorn or his slushie.

13. You can go out and back in again. Just keep your ticket stub. Take a breather if your kiddo needs it and if you think you're both up for it try again. If not, go do something else fun.

So what did we see? Come back tomorrow and I'll tell ya'!


Recent Life is Therapy Posts can be found at:
Learning from Others
Get Out There!



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.

National De-Lurking Day 2010!

I heard about thisfrom Rachel.

So apparently, January 10-12 are National De-Lurking Days. A Lurker is a person who reads a blog or listserve or forum or whatever but does not actually comment. If you don't actually comment on the web, no one ever knows you are there except us savvy bloggers. We know you are there because you appear in our stats. We just don't know who you are.

Soooooo....I know you're out there. Maybe you've thought of commenting but did not want to leave your personal information out there on the internet for everybody to see. No problem! I allow anonymous commenters.

Maybe you have thought of leaving a comment but don't know how (Nana<--not that I would call anyone out or anything). All you do is move your mouse so that your pointer is over the words "Post a comment" or there might just be a number and the word "comments" like "3 comments". Then you click the left button on your mouse once.

If you decide to post anonymously please just leave your name in the comment box so I might have an idea of who you are. If I know you already, nice to see you here. If I don't know you yet, it's nice to meet you and I look forward to getting to know you better.

Oh wait, I'm supposed to give you some encouragement for de-lurking. I spill a lot of my thoughts about my kiddo and life here on the blog. I'd love to hear your thoughts or tell me the latest greatest thing the little or big people in your life have done.

Happy Commenting!

My Cookie Monster Posing for me!

He's getting so big and now he poses for pictures on command. Can you believe it?

Jack Tackled the Sweeping!

My brain did not kick into gear until a little too late and I could not grab the phone fast enough to get a better shot.

I told Jack that he had to help clean up. I meant pick up his toys that were strewn about the house after a day full of Jack and Daddy fun.

I was sweeping the dining room. Before I had a chance to give him a more specific instruction, he came over, grabbed the broom and said "Sweeping".

His sweeping actually looked a lot more like dancing as he kind of hugged the broom and twirled in a bit of a circle while looking up at it. He "swept" the dining room then moved on to the laundry room.

I don't know if he was going to sweep in there or if he was going to put the broom up since that's where we keep it. Anyway, he got distracted in there and wanted to do laundry.

To see more Tackle it Tuesday posts, click here.

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

Jack and Daddy Day!

Mama's working but Jack and Daddy are hanging out at home enjoying some quality time.

SNOW!

Snow! Last year, that is. We had snow in March of last year.
This year, eh...snow warnings, schools closed, people tweeting about snow in Alabama but out our windows...

not even flurries

Does this really need words?

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

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

Life is Therapy--Give it a Try

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

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

You may remember this post where I talked about some of Jack's sensitivities to certain sounds and noises. His preschool teacher, as promised, tried a few different things with him to try and isolate what upsets Jack. She discovered that Jack does not mind it if the kids sing "Happy Birthday" alone. She theorized that he just doesn't like the adults singing over the kids. And what about "Yay!"? Well, Jack did not seem to mind when the kids just shouted "Yay!" It only really seemed to bother him when it was directed at him. So....the end result is....we know a little bit more about what truly bothers him and what doesn't.

It is very nice to understand what actually disturbs him a little bit better but we can't stop everyone who want's to say, "Yay, Jack!" and we can't tell all the adults at every birthday party we attend that they can't sing. So what's a parent to do when a child is sensory sensitive? And aren't all people at least a little sensory sensitive about something?

We cannot control the world we live in and there are some things that unfortunately upset Jack terribly for brief bouts of time. The key is that the upsets are brief. He truly enjoys getting together with other children. AND he learns so much from being with other children. AND the more exposure he gets the less upset he seems to get over these things. When you weigh a brief bit of upset against the positive aspects of venturing out in the world, we say "GET OUT THERE!"

Let me add that we allow Jack the time to be upset. I do not understand why these things upset him so how can I tell him not to be upset? We comfort him the best we can if he has an upset. These upsets do not prevent him from wanting to go to parties. In fact, this fall it seems that he was very busy with all the birthday parties.

The inflatables' places were really popular places for birthday parties this past season.

Unfortunately, this is the only picture we were able to get at Matthew's birthday party before the camera died. You can see Jack's self appointed best friend, Kimberly, in the foreground and Jack and I are somewhat visible in the background.

Jack's niece, Elise, also had her birthday party at one of the inflatable places.

Jack loves these places. He is so used to them now that he says, "Shoes off" and removes his shoes as soon as he hits the carpet of the jumping "arena".

Like all the kids, Jack enjoys jumping and bouncing around but he also always manages to find

the cozy coupe.

For some reason, he derives comfort from these little cars. He is getting a bit big for them and I am sure he will enventually move past these little cars. In the meantime, I try to remember that parties are supposed to be fun. Jack's idea of fun may be a little different but it doesn't hurt him or bother anyone else so into the cozy coupe he goes.

We recently discovered yet a new place to party when Jack was invited to Ren's third birthday party.

Ren's party was at My Gym.They have a dream set up for working on all sorts of gross motor skills such as

balancing,

climbing and walking on unstable surfaces,

dancing with your sibling,

jumping,

and crawling.

There are also oppurtunities for

cooperative play

and deciding how much of a daredevil you want to be.

I would love to be able to tell you that the sensitivities are "fixed" and Jack never cries at birthday parties anymore but that's just not true. BUT we can't let that stop us from going. Most of the party finds him

a happy, handsome little guy.

Recent Life is Therapy Posts can be found at:

What's in Your Child's World
Setting Goals
Videos
Learning from Others

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.

Literacy for a Preschooler with Visual Impairment

I snapped some shots of Jack doing a little reading the other day.

I was browsing through my pictures wondering what to write about. I saw these shots of Jack enjoying one of his "make a sound" books and I remembered that I had promised a reader that I would write about low vision.

Back in February of 2009, we learned that Jack is actually legally blind in his "good" right eye. As far as we can know from the testing, Jack can perceive light through his left eye but the optic nerve does not send a signal to the brain showing any images from the left eye. Jack's vision in his right eye tested at 20/300. We'll see Dr. DiCarlo again later this month and Dr. DiCarlo may be able to obtain a more accurate figure since Jack is much more verbal and might be more cooperative with the testing this year.

As soon as I had the chance, I began combing the internet for information and resources. I was still back in fix-it mode and I just knew that there had to be a way to make this manageable so that it would not impact Jack's development too much. Yeah, I laugh now. Of course, it impacts his development!

I digress...we are still very early in our journey with Jack's vision and it is just one of many factors that Jack is dealing with. For now, we are putting large print along with braille in Jack's environment

It actually says refrigerator and there is one on the freezer that says freezer.

Dr. DiCarlo told us that Jack needs letters 2 to 3 inches high for near work so I printed the labels with the biggest font that would fit on the surface. It was easier for things like walls and doors to rooms but I had to go with smaller than 2 inch letters for the refrigerator and freezer or else the labels would not have fit. I then used a braille labeler to label each of the printed labels with braille as well. At first, we would call Jack's attention to the label and get him to feel the braille just so he would notice it. But the idea is to just have accessible print and braille in his environment so that it will be familiar and so he can incidentally pick up on some reading skills just like a sighted child who sees written words everywhere does.

I also began seeking out resources for obtaining print-braille books. I used my labeler to add braille to some of Jack's already favorite books but it takes a lot more time and effort than you might imagine to add braille labeling to a book. Luckily, there are resources like Seedlings Braille Books for Children. They have a program called Anna's Angels. You can sign up a child with a visual impairment and he/she will receive two free books. You can sign up yearly.  National Braille Press has a program called ReadBooks!. They will send you a bookbag full of great information to get you started as well as free print-braille book for your child. The Braille Institute has a program called Dots for Tots. In this program, your child will receive a multi-sensory story book kit a few times a year. All of the above also have print-braille books available for purchase. The Kenneth Jernigan library will send you print-braille books that you can borrow for up to three months. Your local librarian should also be able to help you sign up for your state or other local agency library for the blind. You can have books delivered to your local library or to your home.

This list of resources is not meant to be comprehensive. These are the programs that we have become involved with and we have been very pleased with the quality of materials that we received from these places. Jack is not yet reading braille or print although we know that he recognizes some print words such as pharmacy and Baby Einstein. At this point, we are still focused on just having both braille and print as a natural part of his environment.

I hope you found this helpful. If you know of other resources that also provide free or low cost high quality print-braille books, please leave a comment and let me know!

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

Happy Birthday New Year!

When Jack woke up this morning, David said, "Happy New Year, son!" Jack replied, "Happy Birthday to you!" David said it is a happy birthday for a new year so we're going with it. I had some Happy Birthday napkins so we're having a happy birthday breakfast of cinnamon rolls. :)
These are Jack's first cinammon rolls at home. He's had them when we have traveled but never at home for breakfast before. I'm thinking that he is happy with the change in breakfast menu (based on the fact that he is near the end of his second roll and asking for another as I type this).

Happy 2010!

What better time to reflect than New Year's Day?

We have had an awesome year. Jack only had one minor outpatient surgery combined with a couple of minor procedures, we made only one trip to Dallas and we have not been to the Children's ER at all this year. All those things are amazing and I want to thank those of you who prayed for us in each of those things.

Truly though, all of that seems to be icing on the cake. So, what's the cake?

Jack!

I know, I know. Each of those things is about Jack.

This may sound really strange but I feel so much closer to Jack now than I have in his other four and a half years of life.

What?!!?

The day Jack was born I got to meet the little guy that it seems I spent my whole life praying for.

I did not fall in love that day. I had already been in love with him. I did. I truly loved him. The fact that he was born different did nothing to change the fact that I was madly in love with him already.

BUT...I am a nurse and a former physical rehabilitation nurse at that. Because of that and my personality and predispositions, I viewed Jack from a medical model. The diagnosis was Apert syndrome.

I don't remember ever hearing of it until he was born. The night Jack was born, David researched Apert syndrome. He returned to the hospital with loads of information for me and the hospital staff. Within days of my discharge, I joined the Apert.org listserve and began gathering information.

My son had Apert syndrome. I was determined to learn everything I could so that we could be prepared to fix everything that we needed to fix.

We began physical therapy when he was only a few months old. We added occupational therapy and speech therapy as he got older. I watched the therapists work with Jack and I tried to do what they did at home. I constantly pushed for Jack to do more and more and more. He's a smart, resilient little boy and I knew he could do more.

I did not understand why he was not talking yet and why he began resisting any efforts at directed play.

Back in November of last year, I realized that my focus was not where it should be. Then, in the early part of this year, I had a breakthrough. I realized that Jack already had therapists and teachers and if we lost a therapist or teacher we could get a new one. There was one thing that I could do that noone else could. No one else could be this little guy's Mama.

So I took what I thought was a big step backward. I fought any urges that I had to do therapy at home. We simply went about our daily lives which included lots of play. Instead of directing Jack's play, I let Jack take the lead. I followed him and watched to see what interested him.

I imitated him. I physically got down on the floor and played the way he did. I quit pushing for more and tried to enjoy each moment for whatever interaction we had.

We grew closer. I understood him more and more. We truly enjoyed playing together. Rather than playing alone or just watching a video, he sought me out for more interaction.

As the year progressed, so has Jack's development. He attempts more and more speech and he is speaking much more clearly. His balance and coordination have improved. He is becoming more independent in all areas. He engages other people more and more. You can tell being around him that he is more confident than ever.

I firmly believe that taking the pressure off has been the best thing I've ever done as Jack's mom. I switched from the medical approach of fixing him to the mothering approach of loving him just exactly the way he is.

That's my cake. It's the best cake I've ever tasted and so each week, I've been sharing the recipe with you through the Life Is Therapy series. There is nothing more rewarding than truly enjoying exactly where a little person is while helping them to do just a little more.

Success breeds success. This year, I wish you much success and joy as you and your little (and big ones too) grow together.

Happy New Year! I have a feeling this one's gonna be a blur of activity....

Of course, don't forget to check out this week's installment of Life is Therapy.