Tummy Time!

After swimming the other day, Jack said he wanted to lie down and take a nap on the driveway. Of course, I grabbed my camera to prove to the world (well the world of Facebook and Twitter anyway) that he does lie down. He did not lie down long enough for me to snap a picture. Instead, this is what I got. Looking at this picture just reminds me of so many baby pictures that friends post showing their babies joyfully doing "tummy time". We don't have many of those joyful tummy time pictures. As in all things, Jack does things in his own time.....

The Easter Tradition Continues....

I don't know why I didn't do a post of Jack ignoring his Easter basket last year. I'm sure he did....just like 2010 and 2009. Anywho...this year I thought that I might have found the ultimate "hook". I found this big tractor trailer truck complete with two construction vehicles on sale at Publix after Christmas. It was only $5! It would not fit in a basket but that's okay. Who needs a basket when you have three new trucks?!!? I also bought a couple of "Cars" spinning tops and a yoyo ball that always comes back.

Here's the little cutie waking up and staying in bed when I said, "Do you want to go see what you got for Easter?" He actually laid back down and said, "Mama lie down you. Stay bed." [Mama lie down with me. Let's stay in bed.]

We finally coaxed him out of bed. Oh yeah, this was my first year having help to create Easter basket interest. This was the first Easter that David did not have to go to work. It is really hard to get the interest going and take pictures. As you can see, he sort of begrudgingly took a look at our Easter offerings....

and marched off....

"Wait!" said Dave. "It's spinning!" At this announcement, Jack spun around

and watched with much interest

until the tops stopped spinning and then he plopped down on the couch to watch a little YouTube.

"Awwww..." you say, "Did he enjoy anything maybe later in the day?" Why yes he did....his breakfast (his nearly daily waffles and sausage)

and hanging with his favorite peeps.

We took him out bike riding which turned into bike riding, running around, and general happiness.

We hope you had a great Easter!

Mirror, Mirror

A friend's post (http://www.graspingforobjectivity.com/2012/04/unlabeled.html) got me thinking about this again today. When Jack looks in the mirror, he likes what he sees. He likes to look at his reflection in mirrors, in glass, on shiny surfaces. When he washes his hands in the bathroom and glimpses himself in the mirror, he takes a good long look and declares, "so handsome!" Because he still doesn't express himself well enough, I don't know if he says "so handsome" because we've said it so much or because he truly finds himself so nice to look at. Jack's craniofacial surgeon says Jack is old enough and big enough and can have his midface operation. We are trying put it off as long as possible. Dr. Fearon says we can wait as long as Jack does not develop a breathing issue (we've got the Bipap for his sleep apnea already) or when he develops a self esteem issue. I don't think we have a
self esteem issue. Jack seems to like himself a lot and he does not seem very interested in anyone else's opinions except those who are close and love him dearly. But I'm a mom so I worry a little (okay I worry a lot!). I hope that we have given him a firm, loving foundation built on the knowledge that he was designed by God for a special purpose and gifted to us to love and adore and help him. But have we gone overboard in telling him how wonderful we think he is?

What do you mean the water's too cold?

My old phone died. I have a hard time with change but a new phone comes with new software....in this case, photo editing software. And that's been fun!

Here's the story of a warm day and a pool full of cold water....

Holding On

Do you remember when he was little and he fit on his little couch like this?He's grown a bit but he still loves his little couch. He asked to sleep on it last night. How could I say no?

What are you and your little folks still holding on to?

DOH! Parenting

This weekend we took Jack to his first air show. We waited until nearly the last minute to tell him. it was a bit of a selfish move because we did not want to hear "Go air show" a million and one times before it was time to go.

In our selfishness, we forgot to prepare him for what an air show is. When I told him we were going to an air show after church, he said, "Pack suitcase. Fly on airplane." I could not help myself. I squealed in joyous laughter. He may not know what an air show is but he knows that you have to pack before you get on an airplane. I still get very excited about his ability to tell me what he is thinking.

Many people go to an air show to watch the planes do fancy air acrobatics. I did not think that Jack would really want to stand still long enough to watch the planes and I wasn't sure he could see them.

When we were at the air show, Dave boosted Jack up high on his shoulder to try to see the show and a very nice crew member at the air show tried to get us in the VIP gate for free so Jack could get a better look. It was only when the planes rocketed past and Jack did not turn to look

David tried really hard to get Jack to turn toward the sound of the planes.

that I thought "DOH! I should have showed him some YouTube videos of plane acrobatics!" so he would 1. know what to look for and 2. possibly be interested.

I thought that he would enjoy getting in and touching the airplanes on display. I was right!

It was still a great family afternoon and we were all very tired when we returned home but Jack still wanted to fly!

Am I the only mom that forgets to prepare her child for the utmost new event enjoyment? Feel free to share your own story and assuage some of my mommy guilt.

One video...many, many accomplishments, many blessings...we have so many people to thank for how very far this PERSISTENT little boy has come.

Time for church.

Pool time

This was *my* shirt. It's faded and soft and apparently very comfortable for Jack. See how he's growing up on me?

Every year the pool shrinks a little more....

Moving Forward in Faith

I have a reached a state of (relative) calm. BUT I don't know that's it is more about reality or more about how this journey with Jack has deepened my faith and trust in the Lord. I feel almost hypocritical in my present state of lack of anxiety because it is definitely easier to say, "I am not anxious. My faith is in the Lord." when I have no reason to anticipate that Jack will require emergent medical intervention any time soon.

But truly, I feel as if parenting all by itself is a journey that can strengthen your faith and bring you into a more trusting relationship with God. And I think that is what has happened with me. Somewhere along this journey, I've learned to trust more and to know that I don't have to have all the answers. I've learned that I cannot control every circumstance and every outcome. I have learned that I must do what God calls me to do and no more. God is in control. I am not.

I can not make Jack reach a developmental milestone before he's ready. I can not make everyone understand what Jack is trying to say. I can not control how people talk to and about Jack. I can not control what Jack learns or when he learns it. <Deep breath> I don't have to.

I can provide an environment where Jack feels deeply loved and appreciated for who he is just at this moment. I can model my values and faith. I can be real and make mistakes and repair them the best I can. I can be Jack's interpreter at times and at other times back off and allow interactions to unfold however they will. I can provide a rich learning environment. I can encourage Jack's exploration of his interests.

I can and I will. Stressing over when and how it will all work out helps no one. So every day, I strive to do my part and have faith in the Lord for the rest.*

*remember I'm not perfect so when you see me stressing, feel free to refer me back to this post*

Where has your parenting journey taken you?

Irish remains a steady companion.

Missing in Action

We're here. We're fine! Thank you all of our friends who have written to check on us.

We've been very busy but NOT with doctors or hospitals. Jack's next expected tests include a MRI and a sleep study. We don't have them scheduled yet. The sleep study will most likely be done here at our local children's hospital. We may have the MRI here as well. We are continuing to avoid the midface surgery as long as possible.

So just what have we been doing? What can I tell ya'? We've been living!

Jack has been home schooled since late October 2010. He has been blossoming! He learns very quickly when he follows his interests. He is not receiving a "typical education" by any stretch of the imagination. We love being able to allow Jack the freedom to learn without trying to stuff him into a mold into which he does not fit.

Jack has become much more social over the last year. He is now the "park mom and grandparents pick up guy". He loves all the moms he meets at the parks especially if they have any bare skin showing. He walks right up them and says, "Heyyyyy", Then he grabs their hand and instructs, "Sit down." Most of the time the moms find him adorable and before I know it he is sitting in the lap of someone else's mom ever so gently rubbing her bare arm or leg. If he sees a set of grandparents, he plops down between them and begins instructing "scoot to closer" until they understand and scoot right next to him so he is wedged into grandparent love.
His vocabulary grows daily. Fortunately, his articulation is improving quickly as well. To add an extra level of challenge for David and I, Jack has begun learning foreign languages from videos that he watches. So now we try to figure out what language he is speaking and what he is saying. Good thing I studied Latin, French, some Spanish, and some Korean in addition to Jack-ese or I don't know how I'd figure it all out.

I'll try to update a bit more frequently...

Anybody home?

It's a tire!

Jack is still not a big fan of writing, drawing, or coloring but lately he's had a fascination with "drawing on the carpet". He makes circles, squares, and what not just tracing with his finger on the carpet. I put his chalkboard easel back up hoping to capitalize on one of these drawing opportunities. Lucky for me, this morning, Jack excitedly called out, "Mama draw circle on carpet!" I led him over to the chalkboard and encouraged him to try it. He drew this and called out, "Daddy, he's drawing a tire! It's a tire!" I could have cried.

I was wrong

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

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

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

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

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

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

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

MUST READ

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

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

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