Heavy Heart

I've been in a bad mood all day. Everything irked me. The world just seemed off kilter and I've been mad about it. There were brief moments today when I realized that I was sad. It's the weather. I miss the sunshine. That's what I told myself. But no, it's just that my heart is heavy.

A little boy named Isaiah died early this morning/late last night just before I went to bed. I've never met him or his family but I'd been praying for them after some friends alerted me that he was not doing well and was in the hospital.

Now I pray for his mom and dad and my heart aches for them. Could you pray for them too?

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 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.

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.

Word(less/ful) and Special Exposure Wednesday--Isaiah's Visit

Almost a month ago, our little friend Isaiah

had to go to Dallas for surgery. Isaiah's parents are such easy going folks and Isaiah is an extremely happy little guy. They actually drive to Dallas from their home in Atlanta. They were nice enough to stop by
Sidney's

house so we could all visit for a bit.

Jack was apparently feeling a bit tired.

Hey guys, Jack is down!

Come on, buddy, get up!

Jaaaack, we want to play with you!

Big boy Jack finally got up and obliged the "little ones". First, Jack took Sophie for a spin on the plasma car.

They had so much fun that Isaiah and I decided to give it a try!

Finally, Isaiah got in some final stretching before hitting the road again.

We're happy to report that Isaiah has recovered well and is already showing some new developments since his surgery.

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--Sometimes You Have to Stop & Reflect on Where You've Been

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, 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.

That was the original beginning of this blog post and I was going to go into more detail about matching your child but I'm going to save that for next week now. This post is late getting out. Jack's been home sick from school and I have had a very busy couple of days at work. Jack seems to be getting over his pink eye and ear infection very quickly but tonight has been a rough one so far. He has thrown up into his mask already and I've already had to clean out his mask again because he's had so many secretions. Nights like these it's easy to get a little down.

But that's when I think back to days like these. Looking back, I don't know how any of us made it through that very trying period with so little restful sleep.

And I remember the gratefulness I felt in this post. Back then I was excited to see him carry little plastic balls in his hands. These days he walks around everywhere with a big green basketball.

Tonight he told me "Jack shoes off in house. Go away." because he did not want to wear the house shoes that I was trying to get on him.

When I came home today, I said, "Ah, I missed you." and Jack said "I miss you!" How very sweet. He is blossoming before my eyes.

Yes, some nights are a little rough but overall Jack is developing by leaps and bounds.

So, on those days, when you find yourself wondering if your kiddo will ever learn anything you are trying to teach him/her, take a step back and look at where you've been. It's very therapeutic for moms and dads. Life is Therapy for us too!

Other Life is Therapy Posts can be found at:
Introductory Post
Prepositions at the Park
Rainy Days
Getting Your Child's Attention

Feel free to share your thoughts. How do you perk yourself up on those tough days?

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.

What Upsets Me

My husband will tell you that I tell way too much of our personal business am a person who shares her thoughts way too much freely. It's true. I love to blog. I love to share what's going on in our lives and I love hearing about others who find themselves feeling much the same way even if our circumstances are different.

BUT some topics are just difficult to put into words. I mull over how I want to say things and I think about how my words will be interpreted. I even cringe at the thought of some of the advice I might receive.

Deep breath....here goes....

Everybody has rough days sometimes. You know those days when your kiddo is just "off", just not Mr. or Ms. Sunshine that everybody just adores. Days like those don't tend to happen when you can hibernate from the world either. In fact, what turns into a "rough day" may have started out just fine. There you are, surrounded by a hundred or more strangers on an airplane and "it" happens. Or, maybe you are out just doing a little grocery shopping when "it" happens. Or even just hanging out in your yard. "It" can happen anytime anywhere and there can be a dozen reasons or no reason at all. "It" is known by some folks as a tantrum. "It" is characterized by loud screaming from a child. Sometimes there is also thrashing about. The biggest definer of "it" is "it"s ability to attract so much attention to you and your child.

There's tons of advice out there on how to deal with "it". I am no expert handler of "it" and that's not what upsets me anyway. What upsets me is not so much "it" but how "it" causes my child to be percieved.

Jack is a late talker. He talks but he is not fully conversational yet and his words are difficult to understand. He has very obvious hydrocephalus. Even if you don't understand the term hydrocephalus, one look at him and you know that he has a very large head. These two things combined can lead to assumptions on the part of unwise people.

Those assumptions upset me. Jack wasn't feeling well last week only I did not know it yet. We needed to run by the grocery store after I picked him up from school. Jack loves to go to the grocery store. He likes to drive the "rocketship" grocery cart, he likes to get the free cookie from the bakery, and when we are done with our shopping, he likes to spend a few minutes running around on the pavement in front of the grocery store and the small little strip of stores attached to it. He does not like having to stop his running around to get in the car.

I prepared him as well as I could. I told him we were going to the store. I reviewed what we needed to do while we were there. I reminded him that he had a limited amount of run around time. I had him repeat me so that I could be sure he heard me. While we were in the store, I reminded him again. When we exited the store, I gave him another reminder. I did the 5 minute countdown.

Still when it was time to go, "it" happened. He started crying and yelling, "Play outside! Play outside!" and "Shopping!" and "Drive cart!" and some other phrases I don't remember now. I had to take a few minutes standing there with him screaming in front of the store before I could get him over to our car. When we reached our car, he continued to scream. He flailed his arms and would not get in the car. He is much too big and much too strong for me to manhandle into the car.

I did the only thing I could do. I stood there with him and waited. I waited for my oppurtunity to speak. I couldn't have out-yelled him. I reminded him that we were a team and I could see that he was having a lot of trouble but it was okay because I was there to help him. I felt good about the approach and it seemed to work because even as he screamed, he would reach for me to hold him. I prayed under my breath as I did my best to remain calm. Slowly very very very slowly he calmed down. He was still upset but he willingly got into his car seat.

In the meantime, I could not help but overhear the loud passersby and their comments that must have been meant for me to hear because how else could they have talked louder than Jack screaming in my ear? I heard a couple of "Oh, bless him he can't help it" kinds of comments, at least one "needs a good spanking" kind of comment, and one very much meant for me to hear because it was said over and over again while they were walking by and they were definitely out-shouting Jack "That is just sad. That kid. That is just sad."

Yes, it's true. At the time of the tantrum, I don't believe Jack was in control of himself and I agree that it was a very sad moment. Needs a good spanking? Just don't ask.

I don't believe that this was what the commenters meant. It makes me sad that Jack's behavior can make someone believe he is less capable than the brilliant little fellow he is. It upsets me that anyone would judge my child's intellect by his obviously upset behavior. Who hasn't seen a four year old have a meltdown in public? Do all four year old's who do such a thing get "Oh, bless him he can't help it."? And what about "that's just sad". Isn't it sad when any kid cries? Is there something particular about his cry that disturbs you?

So, in case you're wondering...that's what upsets me.


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

Fall Festival

If you follow my twitter feed, you know we went to a fall festival a few weeks back. We had a good time just being out in the fresh air. Although, we made a critical error when we chose our first ride. We all rode the tilt a whirl first. Here's Jack watching it go round and round.
We were actually a little dizzy so we took a break to get something to eat and drink. That took a whole lot longer than we thought it would.
Jack got to drive a couple of older boys around for a bit. Then he drove a boat. I thought he liked the boat. David wasn't so sure. You decide!

Kashi--Part of an Active Preschooler's Lifestyle

He he so we're doing a Kashi commercial. :) Not really. In the interest of full disclosure, I purchased the product consumed in this short clip and we are in no way associated with Kashi. Their fruit and grain bars are good though. Jack was enjoying a Pumpkin Pie Bar while running around our yard and our neighbors' yards. I thought it would make a cute commercial and so I taped some of it and here you go....