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:

Impromptu by Request

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

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.

Wordless/Full and Special Exposure Wednesday--Family Thanksgiving

Every Thanksgiving, we get together with as many of David's five brothers and sisters as possible. The celebration size waxes and wanes depending on how many of the nieces and nephews are able to make it too. It's always a large gathering and as you can see, everybody breaks out the cameras and the hugs.

We always take over David's youngest brother Rob's house. He has a great floor plan to squeeze in lots of people. I love our family and I love seeing them all together. It's a good thing because there are people everywhere!

This year, Jeanie and Grandma sported matching casts.

It was thrilling to see Jack right in the thick of everything this year. He did not stand to the side and watch. He jumped right in with all the other kids.

There was tooty tot singing and dancing.......

and we all piled on the trampoline. I'm pretty sure we had to have reached maximum capacity and we did not even have all the kids on there.

Jeanie couldn't jump on the trampoline but she was a great sport and took her baby cousin for a ride.

So many cute little girls in one family!!! (and those are just the ones that made it to Thanksgiving)

There was little time for contemplative reflection

but lots of time for silly happiness

and playing

and sisterly love.

I think Jack's face pretty well sums it up!

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.

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.

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.

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



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,


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.

Life is Therapy

I am starting my first ever blog series. I hope that it will be informative, encouraging, helpful, and fun.

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.

The other piece to this puzzle is that just about everything can be therapy of one kind or another. Jumping in a pile of leaves? Sensory therapy (crunch of the leaves, feeling of fall after the jump), emotional therapy (joyful exuberance), play therapy (work out some pent up energy), social therapy (turn-taking as you wait for your chance to jump in the pile), physical therapy (gross motor skills required in jumping), vision therapy (identifying the pile), kinesthetic therapy (using combined senses to know when to jump), speech therapy (talking about the leaves, saying boom or crunch), and occupational therapy (picking up leaves). Get the picture?

Here's some more examples. Back in this post, I joked that Jack was getting blue speech therapy by sucking an icee through a straw. Well, it actually is speech therapy. Sucking through a straw works the muscles required for speech and sucking up an icee requires the recruitment of more muscles than say water. This post was an example of how swinging can be used for speech therapy. Of course, swinging is also sensory therapy. Riding a tricycle is physical therapy. Every bite of every meal or snack can be vision therapy and fine motor therapy and sensory therapy as the child finds, touches, and tastes their food. Get the picture?

This series is not just for children with special needs either. Parents of children with typical needs don't really call it therapy when their children practice their skills such as potty training but it's basically all therapy. We're all trying to help our children to develop skills to help them have the best lives they possibly can.

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.

After that long-winded introduction, here is therapy at breakfast starring Jack!


***More Life is Therapy:
Prepositions at the Park
Rainy Days

NOISE is fun!

What happens when you let go of expectations and follow the fun? You may find yourself emptying the dishwasher and then....



:)

Making Lemonade

I am so honored that Taryn of More Skees Please nominated this blog for a Lemonade Award

.

The Lemonade Award is given to bloggers who show a positive attitude, gratitude and a willingness to share their ideas, support and online friendship. In other words, people who make lemonade when they get lemons!




The rules of the award:



1. Put the Lemonade logo on your blog within your post

2. Nominate at least 10 blogs with great attitude or gratitude

3. Link the nominees within your post

4. Let the nominees know that they received this award by commenting on their blog

5. Share the love and link to the person from whom you received this award



So, without further ado...my nominations are going out to (going with alphabetical order here):

Bridget's Light for a blog written with such love and acceptance of life as it is not as you might have feared or for life as you wish it had been and for reminding us that "Disability is Natural".

I'm thinking of starting a blog for sharing life with Emma, Audrey, and Ashlea with us.

Isaiah updates for raising awareness of Adams Oliver Syndrome and keeping us up to date on cutie Isaiah's progress.

No Whey Mama for sharing so much of her family's food allergy struggles and triumphs with all of us and let's not forget those yummy recipes too!

One Frugal Foodie for all those delicious recipes that can suit many individual dietary needs.

The Mitchells for sharing the worries and triumphs of raising Baker with us.
***It looks like the Mitchells don't allow comments on their blog. If anybody in bloggy world knows how to get in touch with them, please let them know about their award.

The Ramer Bunch for enduring unspeakable tragedy and yet continuing to put one foot in front of the other each day as you trust that the Lord really does have a plan for your good.

The Allergic Kid for sharing all those recipes and awareness of food allergies but mostly for challenging me to keep my kids lunch at least semi-interesting!
To the Max for being so very real!
 
5 Minutes for Special Needs for connecting me with so many other parents of children with special needs so that I can learn from their perspectives.
 

Thank you again, Taryn                                               ,

for the nod. I enjoyed compiling my list and thinking about what each of these blogs means to me. I read alot of other really great blogs too and I appreciate those also. I chose the blogs above because each blogger writes about some specific atypical medical or emotional need otherwise defined as a "special need".