Happy Mother's Day

Happy Mother's Day 2011! I hope all of you are having a wonderful Mother's Day!

Jack and David made me the most beautiful card:

 My ever poetic and romantic husband also manged to find this card which surprisingly expressed just what he wanted to say:

 And I received this wonderful surprise from my mother-in-law:

Psalm 37:4 says Take delight in the LORD, and he will give you the desires of your heart. (http://bible.us/Ps37.4.NIV) I cannot remember a time when I did not wish to be a mother. As a child, I remember thinking about what kind of mother I wanted to grow up to be. I truly believe that God put that desire in my heart and he fulfilled that desire over and above how wonderful I imagined it could be. He gave me this sweet guy

He made Jack persistent and from his persistence I have learned to have so much hope! He made Jack attention-consuming so that I would not multi-task my way through his life and miss the wonderfulness of each moment. He made Jack sweet and loving to provide me with even more of his love. I could go on and on.....

But God has also richly blessed me with a desire that I did not even fully realize that I had. In fact, he both gave and fulfilled the desire without me taking much notice of it. Did you see the card from my mother-in-law? It's the kind of card that a mother would give a daughter. It's the kind of card shared between two people filled with love for one another. There's nothing like a mother's love and I've privileged and blessed to receive that kind of love from my husband's mother. She's really not even his anymore :) She's mine!

Thank YOU!

Thank you all our sweet bloggy friends!! Your prayers have helped to sustain us through this time. We had a lovely memorial service for Nana last Saturday. The love that she spread to so many was so clearly evident in the room filled with people who came to share her memory. I do think think Jack remembers and will continue to remember her. He frequently mentions Nana and that is a great comfort to my heart.

Things have been very busy here and I hope to return to blogging soon to share our latest adventures with all of you. But for now I'll share a sweet conversation I had with Jack about Nana not too long after she died. I was having difficulty explaining that we would not see Nana anymore.

Jack: Let's go Nana's house.
Me: Nana lives in heaven with Jesus now.
Jack: Let's go church.

Nana took me to church when I was a little girl. She showed me first how very much she loved me then she took me to church and taught me that there is a God who loves me infinitely more than she is able. I'm trying to pass both the love and knowledge down to Jack.

Introducing "Cane"

Jack has a new constant companion. No, no, Irish has not been replaced. Where Jack goes, Irish usually goes too but now you'll be seeing Jack, Irish, and "Cane". I read somewhere that it's good for a child who uses a cane to name it. As typical with Jack, he names things what they are [He's got a plush puppy named Woof woof, a barking plush dog named Barking Dog, etc.]. So his cane is Cane.

A cane? Why does Jack have a cane? He's not blind! No, he is not completely blind. I think my recent Life at Dusk post gives a fair analogy of what Jack's sight is like. The cane is for Jack like glasses are for a near-sighted child, it helps him to better understand what he sees. It helps him to better navigate the world around him.

But Jack already wears glasses! Yes, he does. The glasses protect his eyes. Jack's visual impairment is caused by optic nerve atrophy and cortical visual impairment. The problem is not the image that comes into his eyes. His eyes themselves actually do a great job and only need a slight amount of correction. So the glasses don't really help his vision in a functional way.

Here are a few more articles that might help you to better understand Jack's cane use.

Why Do You Want to Make that Child Blind?

STEP TOWARD EQUALITY: CANE TRAVEL TRAINING FOR THE YOUNG BLIND CHILD

Blind Enough for A Cane?

We introduced the cane late last week. David really got Jack's attention by taking the cane and walking around in our tiled bathroom. David didn't say a word but Jack heard that cane tapping and ran after David to see what was going on. Here's a shot of that first evening.

David's next step as Jack's orientation and mobility instructor was to take Jack on an outdoor walk. Jack is already familiar with our home so he prefers not to use the cane in the home. David knew that we needed Jack to see that the cane actually benefitted him.

David is carrying a bamboo walking stick to simulate a cane and showing Jack how to keep the cane in front of him.

It wasn't long before Jack got the idea.

Of course, he's a little boy and he wanted to have a little fun like his Uncle Noah.

Here's a short video taken during this first cane outing.

After walking around on the sidewalk for a while we decided to try locating and going up and down curbs. Jack is very used to having to stop and shuffle walk until he finds the edge of the curb with his feet. Here's David trying to help him realize the cane can help him find the curb so he can continue his normal pace.

Jack discoved on his own that the cane helped him to "see" that the white lines in the parking lot were flat and not elevated. He was fascinated by this and ran his cane over and over the area.

Here's Jack proudly posing with his cane. He told me "Achoo [it's how we used to get him to smile for pictures] take a picture."

Learning how to manage the cane in the grass.

Tap tap tap on the wall

Using the cane to explore the park

Fun fun fun

He's still a little boy so sometimes he has to be reminded that the cane goes on the ground not waved around in the air.

Still perfecting the technique for uneven ground

Crossing a bridge over the creek

Hey Daddy, come sit with us on the creek bank!

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

Spring Break

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.

It's Spring Break in our local community. This week, I'm just encouraging you to go be silly with your kids.

Later, when you reflect on the silly fun you had, you may realize just how many "Life is Therapy" moments you had. Come back and tell me about them! Get out there!

Recent Life is Therapy Posts can be found at:
Boring is Good
Just Snuggle
Get Your Boredom Going



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 put a link to your post in your comment. If you don't have a blog just leave a comment with your life is therapy story.

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.

Praises During this Small Storm

Jack threw up again sometime last night/early this morning. It's all a blur sometimes. The scary thing is that we did not wake up immediately when it happened. It seems like God usually jolts me awake for these things. But no worries God had his eye on Jack as usual and Jack was laying facedown when I woke up. ***Stop reading here and skip down to the last few sentences of this paragraph if you have a weak stomach.*** I know this is a little graphic but I just want you to know how much God takes care of our little guy. Jack was lying facedown and that caused all the vomit to exit the mask into the Bipap tubing so he did not breathe it in and cause lung damage. Our God is an amazing glorious God who deserves oh so much more praise than I will ever give!!! Anyway I don't know how long he laid like that before I woke up and turned on the light to check on him because I realized something was odd (yet another praise because I was really very sleepy and was just going to turn him over but something (shout out to God!) made me turn on the light first). Anyhow, I turned on the light and was getting him cleaned up when he began vomiting again and much more that time. He refused to eat all day and David said he was pretty lethargic until I finally dragged back home. He perked up a little when his biggest playmate and snuggly comfort item (ME!) arrived. He did eat a little dinner (some cereal and fruit bars--his choice). He's been asleep for a couple of hours and he has not thrown up yet. Pray pray!


Dave is feeling okay. He says he's feeling better since he's at home where he has his medications (Mucinex and Sudafed) and remembers to take them.

I had to work today while my brain tried to knock its way out of my skull little by little. I went to the doctor this afternoon. He says that my neck and shoulder pain were most likely the precursor to me getting sick. He says it's yet another viral sinus infection to be blamed on the ever changing barometric pressure. He gave me a shot to decrease the inflammation, particularly my throat and gave me some other meds and praise the good Lord, meds for my head to quit pounding. They are working.

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.

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.