Late Entry into Thirty Days of Play Challenge

We're late joining up but I'm excited to join Hands On: As We Grow and The Imagination Tree in the 30 Days to Hands On Play Challenge. You can read about it here and here. Every day, they take turns providing a play idea for us to try. We are going to put aside 15 minutes a day of dedicated, non-interrupted play.

At our house, we do "special time" at least once or twice a day but those are times when I promise to allow no interruptions and I allow Jack to lead the way in play. This will be a separate time of play where I will attempt to lead the way with a play idea.

I don't want to go all legalistic on us by going back and doing all the play ideas that have already been presented this month so I'm going to do the day 1 challenge of saying what I hope to accomplish in the challenge and tomorrow we'll dive in with the challenge for day 17.

From http://www.theimaginationtree.com/2011/11/30-days-to-hands-on-play-challenge.html:

Day 1:

Today's activity

Spend a little bit of time thinking about this challenge. What do you hope to gain?

Think about your child (or children) What do they really love doing? What are they good at? Their special interests? This will be really helpful as the challenge unfolds.

My answer:
I have a very simple short goal: to expand our play. We get stuck in a lot of doing the same things. Jack and I both tend to like things staying the same BUT we need some fresh new things to try to improve Jack's development and mine.

Jack loves to move, move, and move some more--run, jump, bounce, skip, ride anything with wheels. As Jack's speech continues to emerge, he likes to play with sounds, words, and phrases. He is most joy-filled when he has my full attention and we are playing together. He tends to be a "sensory seeker". He enjoys swinging, being squeezed tightly and spinning (himself, balls, pinwheels, wheels, and gears and anything else he can get to spin). He does not do much make believe or fantasy play except playing with Elmo.

I'm excited! Wish us luck and say a prayer as we work on expanding our play repertoire. I probably won't post everyday but will more likely do a recap every now and then of how things are going with the different challenges.

Here's my partners in play:

Just Snuggle

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.

If you follow me on Facebook or Twitter, then you know that we have been bombarded by virus after virus after virus this season. We don't seem to get over one before another has started. Some are mild and we rock right along and others just knock us down.

The latest virus is of the knockdown variety but I'm glad to be getting some relief from today's trip to the doctor so that I am able to put up the weekly post.

This week I want to remind you what's most important about Life is Therapy. It's about the connection. The more you are connected to your kiddo, the more you can enter his/her world and see what interests them and use that to teach them skills they need for the world around them. And sometimes having that connection means it's time to drop everything, throw a blanket and some pillows on the floor and just snuggle....

*Yes, he is so tall that his feet reach down to my knees but when he is sick, he thinks he is still just a tiny baby* laying on his Mama’s chest. *Yes, I am aware that he was never a tiny baby.

Recent Life is Therapy Posts can be found at:

Boring is Good
TV is not the Enemy
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.

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.

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.

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!

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.

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.

Life is Therapy--Learning from Others

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.

This week, I'd like to shift the focus from parents to extended family. I'm sure that many of you have spent a lot of time visiting with your extended family over Christmas and perhaps some of you will be visiting with family again for New Year's Eve and New Year's Day gatherings.

Some children seem to be born social. They will allow anyone and everyone to hold them and they quite naturally capitivate everyone with sweet coos and smiles. However, not all children are that way. Some children can take quite a while to warm up to anyone that is not Mom or Dad.

When Jack was first born, it was very difficult for me to allow anyone to hold him. I found it especially difficult if he started crying at all. The problem is that he almost always started crying the minute someone unfamiliar held him. AND everyone other than me or Dave was unfamiliar.

Here are a couple of rare shots of Jack and his Uncle Rob (and cousin McCahill) taken shortly after Jack came home from the hospital.

Just after this picture was taken, Jack began screaming. Rob is a wonderful father of two children. He was familiar with crying babies and he shifted the way he was holding Jack in order to get him more comfortable and to comfort him.

This is part of the learning process for children. They learn from Mom and Dad that other people are okay because Mom and Dad trust them. They learn that although other people are different, they can be comforted by other people.

Unfortunately, as a new mother, I did not quite get all this and "rescued" Jack from his Uncle shortly after the crying started. As Jack grew older and began to attempt to communicate, I continued to hover and interpret. I was fearful that someone would miss his attempts at communication and therefore not ackowledge him and make him less willing to try again.

The wonderful lesson that I got when Jack began attending "school" without me is that he certainly could and did communicate on his own and that he and others could bond and understand one another.

Over time, I have begun to let go a bit more. Jack is remarkable in the ways that he communicates his thoughts and intentions to others. Don't understand his words? That's okay, he might try signing or push you or pull you where he wants you to go.

The other night, when we gathered over at Rob's for our family Christmas celebration, all the children were once again running around. Then I noticed that Jack had disappeared. He was not with all the other children.

Imagine my delight when I found this.....

Jack and his Uncle Rob were studying what happens when you put your hand up and wave it in front of a moving ceiling fan.

We had seen Jack laying on the floor at home, looking up at the ceiling fan, and waving his hand in front of his eyes. We wondered where he had gotten such an idea. Turns out that his Uncle Rob showed him this nifty trick on Thanksgiving.

So, I encourage you. Give your kids and your relatives a little time and space, who knows what they will each get out of it?

Recent Life is Therapy Posts can be found at:


What's in Your Child's World
Setting Goals
Videos
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.

Wordless/ful and Special Exposure Wednesday--Decorating Nana's

This is Nana.

Each year, Nana (my grandmother) chooses her very favorite of all her grandchildren and great grandchildren to come decorate her house for Christmas*. Jack has been chosen every year since his birth. And, of course, I was chosen every year since my birth.

This year's other chosen few were

Rachel

Tunnel Deborah

and Noah.

This year, Nana also asked Anne (Noah's mom/Jack's Oma) to come and bake some cookies to feed the troops.

Here was the blank canvas we started with....

Jack's not big on decorating so he decided to provide some entertainment

in the form of

flipping...

Not to be outdone in the cuteness department.....

Noah did a little improvisational

twirl and

step

dance!

Next up, the big kids tackled the yard decorations....

while Jack protected the cars.

I forgot to get a shot after the boxes were taken away.

But I did remember to capture the beauty that is Nana's Christmas tree.

*So it may not be 100% accurate that Nana chose only her favorites to come decorate the tree. The truth is she invited all the grandkids and great grandkids but the rest of you slackers her sweet grandchildren were too self-involved unfortunately previously obligated to other activities. Let this be a warning, next year, y'all better be at the tree decorating or I'll really talk some smack about you! They were all greatly missed and we look forward to having a much bigger group next year.

Jack's Great Aunt Ninfa showed up later and helped finish up the final decorating but by then the food was on the table and I was too busy stuffing my face making sure that Jack got a good meal in after all his hard work.

We had fun guys! Thanks for having us over, Nana!

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

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