Sometimes It Takes a Daddy

Jack and I go to the park alot. He loves to be outside and around other kids. I like the fresh air. But there are some things that Jack just won't ever get on when we're at the park. I've tried to show him how much fun the different equipment can be but he balks at the idea and heads toward more familiar ground.

David is usually at work when we are at the park but every now and then he gets to join us too. And look what happened....

Maybe this bouncy thing is not so terrible.

Yeah, no big deal. I can totally do this!

I'm holding tight!

Faster, Daddy, Faster!

Watch this!

For the readers, Mama, I know you're gonna blog this!

And here's something we never get when we are at the park without David (Daddy), a picture of Mama and wee little babe (hey, he's always my baby!)

Hope you enjoyed our evening at the park!

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

Life Challenged Me

Sometimes life really challenges what you believe. A good faceful of life can hurt A LOT. But it also makes you think really hard about what you truly believe deep in your heart.

I recently re-iterated how we feel about the genuine curiosity and sometimes embarrassing (for their parents)comments and questions of other children when meeting Jack for the first time. I told here and in my guest post how we explain Apert syndrome to other children.

Recently, we spent a few days surrounded by lots and lots of people we don't know. Those are the times when we get the most curiosity (obviously). We had the full spectrum of reactions.

Some kids did not even seem to register Jack's obvious differences. They just played on alongside and with Jack. Some kids asked a couple of questions and then resumed playing alongside and with Jack.

Then there were just a few kids who would not get anywhere near Jack even after I tried to introduce them.

And, heartbreakingly, there were the kids that (there's just no other way to say this) were mean and hateful. The mean kids called Jack a monster and told other kids not to play with him and to run from him.

I'm not gonna lie. It hurt. It hurt real bad. I did not react well. I withdrew inward. I could not react for fear of the pain inside me jumping out and injuring those little people. And it was killing me that the mean kids were influencing the other kids. I had already tried to introduce Jack to the mean kids but they just were not going to be friendly.

It was just a shock to my system and I did not have a plan to guide me. Though I wish I could believe this would not happen again, the truth is that all kids get picked on for something sometime. Next time, I will remind the child that he is being mean (if you call someone a monster, you know you are being mean) and ask him to stop and again try to introduce Jack. If that does not work, I will ask him to take me to his parent to discuss his behavior.

I wanted to believe that Jack did not hear them but I'm sure that he did. He asked to leave although he'd been having fun and he started clinging to me. We have had a brief talk with him about how some people are mean but that is a reflection on that person and what they are going through, not a reflection of Jack.

I cried a lot and thought a lot and prayed a lot and sought out the comfort of people who genuinely and unabashedly love Jack. Being surrounded by people who love him was all Jack needed. He popped out of the shell he was about to crawl into and enjoyed the loving attention.

But what makes the difference? Why do some kids play with Jack and why are some kids mean? Can I really continue to believe in the inherent goodness of children or do I need to start being suspect of every second glance Jack gets?

After a whole lot of prayer, thinking, and discussing with my other half, I think it's the parents. If the children's parents are not comfortable with Jack and are too busy processing their own thoughts about Jack then they cannot help their children to feel comfortable. They will not encourage their children to play with him if they cannot get past his differences and see him as a child just like their child(ren).

Some people live their entire lives surrounded by people that look and act just like them. When they encounter people who are a different color or speak a different language or have a different culture or use adaptive equipment (wheelchairs, walkers, ventilators, etc.) or have a craniofacial disorder they absolutely don't know how to react. Often, lack of knowledge results in fear. It is sad but true.

So what can I do? How can I show these people that different is neither bad nor scary?

Well, one thing we can continue to do that we do already is to get out there into the world. I truly believe that it does help for people to see Jack being the adorable little kid he is.

I started this blog as a way to keep friends and family easily updated without overloading their email servers. Fortunately, other people have found our life interesting and we've spread a bit of awareness that way.

Fellow bloggers like Jamie at Alabama Bloggers, 5 Minutes for Parenting, 5 Minutes for Mom, and Jennifer have highlighted this blog and helped me to spread awareness. And my bloggy friend Melissa has offered me a guest post on her blog as well. [Promise to get that done soon!] Thank you all so much for being interested in us and for helping us to show others that, although our life is a little different, we are a family living out our lives like so many other families living out their lives.

We will continue to get out in the world and I will continue to blog but I'm also going to have to step out of my comfort zone. I find it so easy to talk to little kids and to write about how I think and feel but in the live presence of other adults I can be quite shy (friends and family please do not overload the comments with proof that I am not shy--I know all of you! *smiles*). I can connect with most kids and usually use that as my opening to connect with the parents. Obviously, that's not always a winning formula. So [deep breath], while we are out there in the big wide world I'll start stepping up and introducing myself and Jack a little more often.

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

Word(less/ful)/Special Exposure Wednesday--Random Cuteness

Mark came back for another visit and I caught the "Three Musketeers" plotting on the steps.

Cute shoes!

Chocolate Chip Cookie Face

At the park with Daddy

Mr. Joy-rider of the plasma car (the leash tied on there is to help me pull him back up the hill)

Office Chair fun

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

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

Life is Therapy--What's in Your Child's World?

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.

Back on November 23, we talked about entering your child's world. I showed a video of me trying to direct Jack's play with complete disregard for what he was doing at the moment. He ignored me. Then I decided to sing about what he was doing and we enjoyed a short interaction. You can see that post here.

When you first enter your child's world, it will be quite foreign. After all, you are an adult and you know that there is a set order to the world and a set way that you are supposed to behave (according to each person's culture that is). Try to put aside all your pre-conceived notions of how things are supposed to be and just watch your child.

When you watch you may see something like this.....

Jack has both a visual impairment and fine motor skill impairment. Jack is legally blind in his good right eye and has light perception only in his left eye. He is adapting to his visual impairment and lack of depth perception. Some of that adaptation results in not really looking at things. Instead of grabbing Smiley with the car, he just grabbed Smiley. He pulled him out of the car but did not notice as he tackled the next challenge of getting Smiley up onto the ramp. Jack was not born with seperated fingers on each hand and he is missing joints in his fingers so his grasp is different from a person with a typical grasp. So the above, simple, fun activity is challenging on a couple of fronts and what's that? Yes, ladies and gentlemen, it is therapeutic.

You don't always have to set your kids up for a "Life is Therapy" skill advancing moment. When you watch, listen, and think, these oppurtunities often jump right out at you. BUT resist the urge to jump in and correct and tell your kiddo how to do things "correctly". See what happens your kiddo's way. In this case, Smiley fell off the top of the ramp but you never know. The kiddo's way may work out.

I just said, "Uh oh, Smiley!"

Jack repeated, "Uh oh."

We had a short conversation (speech therapy) at Jack's level of 1-4 word simple phrases and decided that we should try putting Smiley in his car and then down the ramp.

Jack got in some more fine motor and visual therapy first finding Smiley's car, then putting Smiley in, and trying to orient Smiley on the ramp. Of course, we engaged in speech therapy as we chatted and he asked for help as needed and I made suggestions when asked for help (help does not have to mean do it for me).

We finally got him oriented, Jack pulled on the "launch latch" and off Smiley went.

The toy says "Yay!" as it launches Smiley and then makes some other somewhat loud noises as Smiley exits the ramp so this was also a bit of sound desensitization therapy for Jack too.

In this shot, you can see how Jack looks forward to more occupational therapy, speech therapy, vision therapy, and sound desensitization therapy.

Sometimes when you enter your child's world, you find that they are already well on their way to creating learning and developing experiences. Your joining them can enhance the experience. Just remember that it's their experience and resist the urge to take over. Let your kiddo have fun. Find a way to join in and have fun too!

Other Life is Therapy Posts can be found at:
Introductory Post
Prepositions at the Park
Rainy Days
Getting Your Child's Attention
Relfecting on Where You've Been

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.

He's gonna live...

The verdict from the doc: our throats are swollen and VERY sore from upper respiratory infection (a bad cold). On top of that, Jack has a really bad right ear infection so he's getting an oral antibiotic added to his usual regimen. Me? Well, I got a steroid shot to decrease that swelling in my throat and cough medicine to make me go nighty night. Jack would not even look when the nurse gave me the shot but he sat right next to me and even held my hand during my exam.
More proof that Jack's becoming a social butterfly? Until it was his turn to go in the exam room, he walked around the doctor's office into the nurse/doctor area and said both the doctor's and the nurse's names. He was mighty proud of himself!
For further proof that Jack L-O-V-E-S ham buh guhs, here's a shot of Jack painfully choking down one bite at a time. You should see the face he makes but he won't eat anything else so it must be worth it to him.

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Sick puppy

Had no idea he was THIS sick. Imagine Jack lying down mid-morning. Something's wrong with this picture, right? Now imagine Jack VOLUNTARILY lying down at the doctor's office on the exam table. He must feel really really baaaaaddddddd. I'll keep you posted.

Just a Quick Thank You

I just wanted to say, "Thank you!" to the wonderful people who help to shape my perception of the world as a world of possibility and hope, a world of compassion and love. I cannot tell you how very much you've meant to me just today.

My bloggy friend Jennifer of Dust Bunny Hostage is one of those people. She has graciously put up a guest post from yours truly hoping to spread awareness and help me out with supporting Apert International. Please stop by and leave a comment with some bloggy love! :)

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

I can't leave you without a picture of the cutie tonight. Here's an oldie but a goodie. This was the afternoon that Jack first got his glasses back in August of 2006 when he was barely a year old.

SEC Championship Happiness

Don't forget to check out the latest installment of Life is Therapy at http://allaccesspasstojack.blogspot.com/2009/12/life-is-therapy-sometimes-you-have-to.html.

Christmas Lights!

Our fab-o decorating neighbors have some nice Christmas light displays and Jack is enjoying them this Christmas season.

Don't forget to check out the latest installment of Life is Therapy at http://allaccesspasstojack.blogpsot.com/2009/12/life-is-therapy-sometimes-you-have-to.html.

This message has been sent using the picture and Video service from Verizon Wireless!

To learn how you can snap pictures and capture videos with your wireless phone visit www.verizonwireless.com/picture.

Note: To play video messages sent to email, Quicktime@ 6.5 or higher is required.

What is Apert Syndrome? How do I explain this to my kid?

So you've seen us around at the park, the playground, or the store or maybe you just met us through this blog. You've already read what I wrote about children's comments and allowing them to ask their questions but you'd like to explain to your child what Apert syndrome is in a way to help them know a little more about Jack.

Here's what we say. It's not scripted. It's just always something like this. Jack was born a bit different. He did not have seperate fingers or toes but we got the doctor to seperate them for him. Also, he had some problems with his head that made it grow big but the doctor took care of those problems too. Jack does not see very well so he often uses his hands to feel people and things and Jack is still learning to talk but he is a little boy who likes to run and play just like you.

Its a lot of information to take in so we always finish with the fact that Jack is a little boy who likes to run and play just like them. Children often remember just the last part of what you tell them and that's the most important part, isn't it? We'd appreciate it if you'd stress Jack's sameness and not his differences. He is different. Kids will notice that on their own. Help them to see how he is like them. He very much is and he loves being around other kids.

If you'd like more information on Apert syndrome, please go to http://www.thecraniofacialcenter.org/apert.html. This is Jack's main surgeon's website. He gives you a system by system breakdown of what can happen with Apert syndrome. Apert Syndrome affects each child differently. Jack does not have all of the different problems that can happen with Apert syndrome and not everyone with Apert syndrome has the problems that he does.

If you or someone you care about has Apert syndrome, please check out http://www.apert.org/. The site has great information and you can read the stories of many individuals. There is also a listserve that you can join for even more information and support.

Don't forget to check out the latest installment of Life is Therapy for ideas on how you can help your child grow and develop through your everyday routine at home.

You Can Help and It's Free!

Apert International is a quiet organization that helps out folks with Apert syndrome with travel for medical care, basic necessities, medical costs, a little rest and relaxation or whatever is needed. Each charitable donation made by Apert International is decided on a case by case basis. There are no long forms or generalities that they apply to your specific situation. They get to know you so they can help you meet your needs in whatever form they come. They talk to you and help you in whatever way you truly need at the time. Please vote for this worthy organization. It doesn't cost you anything but it can mean a great deal to a family who has a child born with a rare craniofacial syndrome called Apert syndrome. If you've followed our story, you know the numerous times that we have traveled from Alabama to Texas so that Jack can see a surgeon who specializes in this syndrome. We are fortunate to have good insurance coverage and an awesome family and church family who have helped us to make it there. Not everyone has that kind of support but every child deserves to see someone skilled to do the specialized work needed for this rare syndrome. No child should be limited in their care by where they happen to be born. Look at Jack and see how he thrives. The best thing we ever did was decide early that we would treat with a doctor and at hospital who doesn't ask us to spell and describe Apert syndrome. Won't you help give another family that chance too? Click below!


Check out the latest installment of Life is Therapy.

He's on His Way Now....

We have some friends who were nervous about their first meeting with Jack because, you know, he's a rock star! I laughed when they told me about that and said, "Oh, he's just a kid." Some of our friends have decided that Jack really should be a rock star so they gave him his first guitar.

It was supposed to be a Christmas present but I knew he would love it and couldn't wait.

This short clip is made up of a bunch of pictures from the first time we opened the guitar case and showed it to him.

And here he is giving a performance of his skillz a few days later, surpisingly in the exact same outfit. Rock Stars are funny people.

Thank you so much Rodger, Carol, Ethan, and Adam! Sorry that we did not wait for Christmas. :)

Check out the newest Life is Therapy installment here.

PS. Anyone who wants to donate carpet cleaning to us so that these pictures and videos will be more aesthetically pleasing to the eye, please contact me at empwrn@bellsouth.net.