Wordless/Wordful/Special Exposure Wednesday

Jack's was invited to Brock's 6th birthday party. This year, Brock went with a Teenage Mutant Ninja Turtles Theme. It was a lot of fun and required less dressing up than last year's Halloween costume theme.

Happy Birthday Boy

When we arrived, we were greeted by the smiling faces of Jack's little and big friends.

Happy Birthday Boy's Sister

Jack is becoming more interactive with other people everyday. He still interacts with Mama and Daddy more than anybody. His teachers at school tell us that he is very interactive with them and showing more interest in interacting with his classmates as well. Jack has always loved being around other children but he has been at the parallel playing stage for quite a while. He is coming out of it slowly. Birthday parties are fun for Jack because it means lots of kids will be there. However, he still likes to do things a bit differently. At Brock's party, he kind of hung around the periphery and enjoyed the swing ALOT.

Getting too big for the swing but still so cute!

There was a time when I foolishly allowed Jack's playing on the periphery to seriously bother me. I wanted so badly for him to hang out with the other kids and do the things that they did and to participate in all the games. I was frustrated and I did not know how to make the interactions happen AND I was frustrating Jack. Luckily, one of Jack's speech therapists introduced me to the work of Dr. James MacDonald and I read more about his way of increasing communication with children. He taught me to join Jack in his world and interact with him there before expecting him to leap into the world of others. It's really helped me to relax and enjoy our time together more and realize that each child develops each skill at his own pace. The more I relax, the more fun we have together, and the more Jack opens up to everyone around him. Sounds simple but it takes a surprising amount of effort to get started.

Brock handed out some very cool Teenage Mutant Ninja Turtle Masks. Jack did not want to wear one and he did not want me to wear one either (thanks, Jack!). Most of the kids wore them for a bit but nobody wore the mask longer or better than Miss Sophie.

Who was that masked cutie pie?

Since Jack has been able to eat cake again, I've tried several times to offer him cake but he just was not interested. But remember, he LOVES pie. At Brock's party, I asked him if he wanted pie. Of course, he said, "Pie, please." I said, "Well they don't have pie but try this cake, it's like pie but it's cake." It worked! He loved it.

Mmmmmm.....caaaaaake

I just liked this shot of Jack looking out the window. He looked out the window for a few minutes while Brock was opening presents.

Lost in thought?

Shortly after this, Jack was done (that's code for needed a nap and was overloaded with sugar) so we got Brock to open our gift and said some hasty goodbyes.

To see more posts like this one click on Wordless Wednesday, Wordful Wednesday, and Special Exposure Wednesday.

Jack's house hunting

Maybe he wants to get out on his own? He's been fascinated the last couple of days with this empty house on our street.

Great things come to those who don't interrupt!!!

This morning at breakfast Jack spontaneously began what I thought was just reciting the alphabet. He jumbled a few of the letters and many of them were not really clear at all. I considered repeating the letters in the correctly pronounced correct order but he never really paused so I did not interrupt. To my surprise, he not only did the alphabet, he sang the entire ABC song! Woohooo!
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1 d we'll watch the game-not today

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

God is Good even when breathing is tough

Jack is having a surprisingly difficult time breathing tonight. He is not currently sick so when he started dropping his oxygen level so quickly after he fell asleep tonight it really took us by surprise. We weren't too worried until we hooked up his Bipap AVAP and the pressure continued to climb as Jack's chest heaved in an attempt to take in air. Every single breath was requiring all of his breathing muscles. We watched kind of stunned as his chest would sink in deep with each attempt to pull air in. We turned his supplementary oxygen up higher and higher just trying to keep his oxygen levels up while we waited for the Bipap AVAP to reach a level where it was adequately keeping Jack's airway open. I said to Dave, "Of all the stuff we do this sucks the most. Who wants to watch and wait while their child struggles just to breathe?" I was angry as I prayed and then I remembered the song that has been stuck in my head for a few days--While I'm Waiting by John Waller. It struck me that I, like so many mothers of children much more fragile than Jack, was waiting on the Lord to reveal his glory in Jack's life. My attitude turned toward gratitude as I thanked God for the machine that made it possible for Jack to get enough air each and every night. I began to pray for many of the mothers that I know that are waiting on God to heal or help their children. Hug your children tight tonight and enjoy watching them sleep. God is at work in each little breath and we have ringside seats!

Not So Wordless Wednesday--Seeking Sensible Sensory Sensitivity Solutions Speedily

I'll get to the Seeking Sensible Sensory Sensitivity Solutions Speedily in a moment. First a story told in pictures. :) (Story does apply to the need.)
Jack was invited to his self-declared best friend's birthday party. Kimberly is one of the older kids in Jack's class. She just turned 5 and celebrated her birthday at Pump It Up. It was really a blast.
Jack is growing up fast. Here's the look he gave me as we entered the inflatable area where a few of his classmates and other kids were already running around.

Are you really going to follow me around with that camera?

We started out jumping with everybody else but then....

You've seen pictures of this place before and you've seen this car before. Jack seemed to remember it although it's been quite a while since we've been back.

Why, hello, old friend!

Let's go for a spin!

Once he saw the car, Jack really wanted to drive the car more than anything else.

Umm...will somebody please get Jack out of the car now?

With Kimberly's encouragement, Jack did get out of the car again and joined the rest of the party. He was a bit reluctant but really got into the jumping again. Then it was group picture time.

Notice that most of the kids were looking to their left. See Jack? Guess which side I was standing on?

So here's where we get to the Seeking Sensible Sensory Sensitivity Solutions Speedily.

After the group pictures, the children are herded fall in line and run like wild animals walk over to the celebration room or whatever they call the place where they do the food, the cake, and the presents.

I was concerned about how this part would go because:

#1 Jack would prefer to be in the great outdoors at all times (well except every now and then he would like to go inside and watch a dvd). If he must be indoors, he prefers open spaces. Jack does not like small crowded rooms. I don't know if they are too visually cluttered for him or if it's just too hard for him to navigate or he's just claustrophobic but on a bigger scale than his Mama.

#2 Jack does not like really care for pizza or birthday cake so there was little incentive to entice him to go to the room and stay. Well, I shouldn't say little incentive. He did like being around all the other kids. That's how I got him into the room.

#3 The song Happy Birthday makes him cry. It's not as bad as it used to be. In fact he seems to be trying to get over it by singing the song himself. Once he started saying Happy Birthday, it wasn't long before I found him singing Happy Birthday to you, Happy Birthday to you. I joined in and sure enough, tears, lots of real tears with the matching you hurt my feelings/I'm so upset face to match. He seems to be okay with it if you only sing the first couple of lines or if you sing the song really low.

At Jack's birthday party last year, we didn't even sing Happy Birthday. This year, we sang quickly and no loud clapping or cha cha cha was allowed. Then I quickly distracted him with Hey, let's have some cookie before he could get upset.

At church this past Sunday, Donna had a birthday and since everybody knew how Jack is we sang it really low so he would not get upset.

Those kind of accomodations don't occur at another kiddo's birthday party and I wouldn't expect it. So everybody sang Happy Birthday to Kimberly and Jack made it through to the very end when he just bawled. I was able to calm him fairly quickly then we said goodbye and made a speedy exit.

Jack likes to watch You Tube Videos of other little kids singing or being silly so I just knew that he would LOVE watching a video of Rachel's daughter, Ali. Adorable Ali was singing to make her mommy feel better. As I predicted, Jack loved it UNTIL Rachel in her delight over Ali's skillz exclaimed, "Yay!" It was short. It was practically not even said but sure enough first he made that face that tears my heart to pieces and he cried. He did not wimper. He did not sniffle. He cried hard. The kind of cry that leaves you gasping for air.

This absolutely breaks my heart for him. There are just certain sounds that he does not tolerate from the human mouth. It's not even that he does not tolerate them. It appears as if he is physically/emotionally/psychologically hurt by them. And "Yay!" is the all-time favorite expression of adults everywhere when children master something. I try to remind everyone not to say it to Jack and if they do I brace myself or try to rush over to Jack to cut the tears off at the pass. Sometimes that works but most times...

Please please please somebody out there on the world wide web, tell me a story to give me some hope. Did your child or you do this? What helped them/you get over it? All you sensory experts, are there exercises, desensitizing, anything that we can do to help Jack with this?

For more Wordless Wednesday and Special Exposure Wednesday links, click on the words.

Oh no! I don't think so!

Jack has picked up a disturbing habit. His teacher, Ms. Sunny, told us that he has done this at school but he only did it with her and she and I thought maybe it was because he thought her reaction was funny. Well, Mr. Bad Habit reared his ugly head tonight after dinner. Jack requested some juice for his after dinner drink. He ate plenty of dinner and he looked super cute struggling to get the big bottle of juice out of the fridge and give it to me, so why not? After he finished every last drop of juice and turned his cup up three times to make sure he got it all, he threw it and I mean threw it on the floor. He didn't toss it. He didn't drop it. He threw it on the floor and cracked it TWICE. After he threw it the first time, I gave it back to him and sternly said, "Put it on the table" and he threw it down again (after first checking for juice). I could not believe it! I handed it to
him again and assisted him in putting it back on the table. After taking the pic for your viewing pleasure, the cracked cup went in the trash. Mama is NOT thrilled about this.

Convo w/cookie face

I had just gotten out of the shower and I heard the sound of Jack's cup hitting the floor. I throw the towel around me and come out to the living room to this face. Can you see the cookie crumbs and the chocolate? I say, "Hey what are you doing?" He says, "cookie please." I go over to the table where I left a choc chip cookie earlier and say, "What happened to the cookie?" Jack says "searching for cookie" like he needs to go looking for it--as if he doesn't know it's bye-bye in his tummy! Gotta L-O-V-E my kiddo!
***update: He dropped the cookie and because he is not very good at visually searching and does not see well, he did not see the beige cookie he dropped on the beige carpet. Oh well, at least he did not step on it. :)

NOISE is fun!

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



:)

Halloween 2009--A Lesson in Expectations

I'm going out of order here. I'm behind on posting other recent events but I'm going to go ahead and put up our Halloween pictures. We went to a pumpkin patch again this year. We went back to same one that his school went to last year. I will post pictures from our Pumpkin Patch adventure later. We picked out this pumpkin.....

This year, I was inspired by pictures of Kelly's family carving their pumpkins. She posted them on Facebook so if you are her friend on Facebook, go check them out or go post a comment at her blog asking her to put up her pumpkin carving pictures like I did.

Jack's co-teacher, Mr. Daniel, reported that Jack LOVED putting his hands in the pumpkin at school when they carved the class pumpkin. Jack loved it so much that Mr. Daniel got all the pumpkin goo out and set it on the table so that Jack could play with it some more. Ms. Sunny and I were delighted to hear it but very surprised since Jack is very picky about textures and generally does not like to touch gooey things.

Kelly's inspiration and Mr. Daniel's gooey goodness story started a little fire burning in my brain. Oh, what fun our family will have carving a pumpkin this year! I expected that the three of us would get into it together. Alas, Jack just wasn't into it. At first, I thought maybe he was just waiting for the pumpkin goo. I wanted a picture of him marking on the pumpkin to create the template but Jack doesn't like to draw so we just posed this shot.

Turns out that Jack wanted nothing to do with our pumpkin or our pumpkin goo. David cut the pumpkin open and we tried to get Jack to feel around the inside but he wanted nothing to do with it. So next I carved out the face I had drawn. It was my first pumpkin carving in a very long time and I couldn't make the teeth so we went for a great big smile....

So then I thought well maybe he did not like the plain ol' pumpkin but Jack will be enamored over this pumpkin with a face!

Ummm....not so much....

Then David grabbed a candle and lit up our pumpkin. Alright, I thought, Jack's going to love this!!!!

Or maybe he'll just love the railing on the porch as usual....I don't think he ever really noticed that pumpkin. But, you know what? He had fun when we let him swing or run around outside after dark.

After that picture, we got Jack his favorite dinner (ham buh guhs and pie) and rented Fantasia because we thought we'd all love the music and Jack might enjoy the visuals. Jack did love dinner and he loved walking around outside the movie rental store. Fantasia locked up a bunch (old DVD I guess) but Jack really enjoyed just spending time with his Mama and Daddy. Let it go, I told myself. So what if we did not really do the pumpkin carving as a whole family! The important thing is to enjoy ourselves as a family. It really doesn't matter what activity we do or how we do it, right?

Lesson learned......ummmmm....or maybe not....

I had my heart set on Trick or Treating this year. Jack and I sort of did a dry run when we went door to door selling coupon books. He loved knocking on people's doors and he loved being outside. Perfect! I thought Trick or Treating is going to be the best thing ever! Lots of doors to knock on, other kids everywhere, Yipppeeeeee!!!!

I dressed in a costume that I kid you not had little boys everywhere getting huge grins on their faces, pointing and stammering, "T-t-t-t-t-t-t-homas!" My kid is gonna LOVE this!!!!

I thought our trick or treating pictures would look like the ones featured here.

Jack had fallen asleep on our way home from visiting with friends (another fun post coming later). I knew it would be a bit of a late evening so I just let him sleep while I put out our candy and got in my costume. He woke up a little ill but I thought once we got started he would cheer up. Alas......

our cute train engineer only wanted to walk in the dangerous road. NOT GONNA HAPPEN especially not in the dark on Halloween.
We tried walking abit but Jack stayed upset and only wanted to be carried. He clearly wasn't enjoying it. I kept asking him what was wrong and it finally dawned on me that it was kind of late and Jack had not had dinner. In my excitement, I had forgotten to plan for dinner. I gave up on trick or treating in the neighborhood and we headed off to McDonald's and our usual Halloween party.

I experienced another "Duh" moment when Jack started chewing his sleeves like his life depended on it. Uh oh, teeth, I think my little guy is getting some more teeth. So he was hungry and hurting upon awakening from a nap only to have his Mama hurriedly rush him through putting on a costume and parading around for the neighborhood. Hmmmm....not your best set up for success.

After the ham buh guhs and running around and seeing the other kids at the party, we found ourselves having a good time after all....

How could you not? There was music, there were other kids and the bouncer.....

At the end of the party, I took off Jack's costume and we stomped around outside. Look who's having fun now....

Note to self: Drop the expectations, make sure that kiddo is as healthy as can be, as rested as can be, as pain free or distracted from pain as possible, well fed and well hydrated and just follow the fun. Life is much happier that way!!!!

Breakfast

Don't you wish this sweet face greeted you at breakfast every morning?

"Speech Therapy" at the Park

We learned about Dr. James D. MacDonald and his approach to helping children learn to talk from one of Jack’s speech therapists last summer. We began applying the things we learned but didn’t really truly “get it” until after we joined his Yahoo Communicating group and a similar Yahoo group called Natural Late Talkers. I combed through the resources of their file section and dove headfirst into Dr. MacDonald’s book Play to Talk. It changed the way we began to think of not only Jack’s speech therapy but all of his therapy. It made us remember that every person has to go through stages of development. You can’t leap through development. You go through each part before you get to the next. I can post more on that later….
Anyway, we’ve put Dr. MacDonald’s ideas into practice and Jack’s speech continues to flourish. Here’s a little sample of Jack and I having a communicating partners-style conversation at the park. In this video, our conversation does happen to be with words but you can interact with your child non-verbally before words and even after words begin to build a foundation for a child to learn to stay with people, to enjoy people, and to be interested in people.
I’ve included a transcript here of our conversation since some of it is difficult to understand.


M: You gonna swing? (Great vocab, Mom!)
J: Whee
M: (laughs) Whee!
J: Highlights from 5 symphonies (sometimes he smooshes lots of words together. I recognize what he says because it comes from the beginning of Baby Beethoven). Hamster. Hamster (When he thinks of his favorite videos, he thinks of his favorite parts and Baby Beethoven has a hamster that spins on a wheel. These days anything that spins reminds him of the hamster.)
M: Hamster?
J: Doo doo doo doo (more Beethoven)
M: Doo doo doo doo
(Notice we continued to do the “musical exchanges”. These may not be real words but Jack enjoys interacting back and forth this way. See how many “turns” he takes with this?)
J: Swing
M: Swing!
J: Hey shhhh….Hey hey swing
M: Swing!
J: Help
M: Help?
J: Stop
M: Stop?
J: Stop
M: Push? (I was suggesting that he stay on the swing and I push him some more. Since he was using one word phrases, I did too.)
J: Push

J: Stop stop stop
M: Stop?
J: Stop
M: Stop?
J: stop
M: Stop yes? (This is a little bit of a technique called recasting. We are trying to get Jack to learn to answer yes instead of just repeating what he wants.)
J: yes (He’ll answer yes but right now it usually requires prompting. He’ll get there.)

J: Swing. Push.
M: push?
J: All done get out (again smooshing of the words)
M: All done?
J: Da (that could have been stop but sometimes he goes Russian on us and says Da instead of yes.) All done.
M: Stop?
J: Stop. Irish. (It’s his lovey—a green basketball with “Luck of the Irish” on it for those of you who aren’t familiar with Irish.)
M: Now what?
J: Searching. (Jack has visual difficulties and used to just ask us to bring him stuff he wanted. I began encouraging him to help me look by walking around with him saying, “Searching, searching, searching for _____”. It stuck and now whenever Jack wants to look for something he says “Searching”)
M: We didn’t bring Irish.
J: Go go. (There are certain words and phrases he tends to repeat. Go is usually go go and sit down is usually sit down sit down.)
M: You want to go? (Sometimes he’ll actually say “I want _____”)
J: Irish. Please (we were kind of overlapping here at the end)
M: Go get Irish?
J: Please. (Instead of saying yes he will either repeat what you say or say please.)

Cotton Pickin' Food!

What else? Ham buh guh

Why Jack needs a car vaccuum 4 Christmas

Cutie at the park

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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!

Labelling and other Developments

When I went to pick up Jack at school today, he was so excited. He said
Nana(Imagine making the "n" sound kind of in the back of your throat and the
"a" sounds just like the a in Mama. It's the way Jack says Mama). I said,
"Hey Jack" and we shared a sweet hug. Then he backed up and with a huge grin
he reached down and said, "Rocks" as he felt the mulch. Jack is visually
impaired and I guess playground mulch might feel a lot like little rocks. I
said, "Rocks? Mulch" so he said "noch" (long o). Next he walked toward the
little playhouse and extended his arm to point and said "House!" Then as we
were leaving, he happily announced, "We go shopping!" as he pulled my hand.
We were actually headed to the park and when I told him he said, "Pok!
Pwgw!" (Park! Plaground!) We got to the park and he said "Gidut"(Get out--as
in get out of the car). I helped him out of his seat and he said "Pokn not"
(Parking lot) pointed at a wall and said "Tosh duwol" (Touch the wall). The
labelling continued at the park with a few phrases thrown in to get me to
slide with him, take him over to a bridge he likes to play on, run with him,
sit with him, help him swing, etc. He climbed up the playground equipment
and only once did he get anywhere near stepping off an open platform into
empty space. He's getting better about slowing down for his own safety. You
can actually see him trying to determine the height of things. And he's
getting bolder about doing things on his own. He's still in that check in
with Mama stage and Mama's my favorite playmate stage but he seems to be
quickly moving forward. Today, there was a little girl at the playground. At
first, she was quietly hanging around us and Jack did not see her. For some
reason Jack did see her when she was leaving with her mom. He noticed her
and yelled out "Siddow, siddow" (sit down, sit down). I think he was trying
to get her to stop and play with him. My little guy is growing up.
I'd love to hear. What are your kids up to?

Snapshots of Sleep--Not completely Wordless Wednesday

Doesn't he have cute PJs?

1st the pulse oximeter is attached. It tells us how much oxygen is getting to his body tissues.

Command center--The machine on the left toward the head of the bed is the Bipap AVAP. Then on the little shelf is at top a clock radio, second shelf all too important puffs plus, and bottom rack the pulse oximeter display. It's not on yet so you can't see anything.

All hooked up

A picture of our rigged up headgear before we connected the Bipap tubing.

For other Wordless Wednesday and Special Exposure Wednesday posts, click on the respective phrases.

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".