August 31, 2011

Photos of the Month: August 2011

Snapshots of our life...


Few things separate Grant from his bat and ball

Grant and Aunt Lydia


 






Wordless Wednesday: "Fixing" Autism


Please stop the blog music so you can get the full effect of the video below. You can stop the music by scrolling to the bottom of the web page and clicking the pause button. Thanks!





August 30, 2011

Therapy Tuesday: Pop Rock Therapy

No, I am not suggesting putting in a Goo Goo Dolls CD and rocking out (though I can see how that would be therapeutic). I'm talking about the candy I discovered at summer camp when I was a little girl - the sickly sweet little pebbles that POP when they make contact with your tongue.


In my post last Thursday (Fragile X Syndrome and Eating - click here to read it) I mentioned one of the things I like to do to engage Grant's mouth muscles is use Pop Rocks.

A couple weeks ago I read an article by Tracy Stackhouse and Sarah “Mouse” Scharfenaker in The National Fragile X Foundation newsletter about mouth stuffing (excellent article - click here to read it). It suggested using Pop Rocks as input "to wake up that mouth and get those muscles activated".

Well, I tried it and Grant loved it. It was fun and something different. We've only been doing it a little while but I've seen immediate results when it comes to Grant's need to mouth [lick, chew, gnaw on] various objects.

One thing I don't like is the ingredients on the Pop Rocks package include artificial coloring - like red dye #40 - not that I'm surprised (red dye #40 can cause hyperactivity for children who struggle with ADHD). I tried to find a place where I could purchase organic Pop Rocks (if such a thing exists) online but my search was unsuccessful. Though I did find a recipe for Pop Rocks (click here)... We'll see if I can squeeze in enough time to try the recipe. In the meantime, I suppose a little bit is OK. :) It seems to be worth it.


If anyone finds a place where I can order organic pop rocks online, please send the link to me.

August 29, 2011

Pack Rat

Wesley is my pack rat. If I'm missing something he's often a suspect. It's not uncommon for him to snatch an item and hide it somewhere. I'm pretty sure he's making sure my investigative skills stay sharp.

It all started when Wes was around 12 months old. While cleaning the house and searching for some random things that had gone missing (thinking I had misplaced them), I looked under one of the corners of our couch. There, neatly stashed, was a collection of miscellaneous items from around the house.

Later that day I saw Wesley walking around with a spoon. Thinking no one was watching him, he crouched down and shoved the spoon under the corner of the couch. I caught him in the act red-handed!

You never know when you open a door or look in a corner what you'll come across...




August 25, 2011

Fragile X Syndrome and Eating

We have been working with Grant for several months (probably close to 18 months) to learn how to eat with a fork and spoon. It has been no small task. He tries very hard but because of his fine motor and oral motor planning issues he struggles to firmly grasp the utensil, rotate his wrist to scoop or stab the food, and then put the proper amount of food into his mouth.




Pictured above are all the forks and spoons we have tested. The last set (red) has thick, weighted handles. They make it easier for Grant to grasp and control his movements.


Unfortunately, even with special utensils, it is not uncommon for Grant to overfill his mouth, causing him to gag and choke at times. I have fine-tuned my Heimlich maneuver skills. Grant does not feel the food in his mouth the same way we do (hypotonia and Sensory Processing Disorder). Because of this, he often stuffs his mouth too full of food to get the sensation that his mouth is full enough.




We use mirrors to show him how full his mouth is and to encourage him to eat properly. Sometimes the mirror helps, but it can be a distraction too. We also use a z-vibe and pop rocks to wake up his mouth muscles/nerves before eating (a habit I need to get back into consistently).


After several months of coaching him to eat without using his fingers, Grant still looks like this when he is eating. :) It is a work in progress.


We were having lunch with friends when this picture was taken. While we were eating, Grant's friend kept saying "orange, orange". We didn't know what he was talking until we looked at Grant. Yes, Grant's face was definitely orange.

August 22, 2011

New Page: Why Red Letter Living?


Ever wonder what Red Letter Living means? Or where the blog title came from?

Find out by clicking {here} or on the page button at the top.

Have a great Monday!



August 19, 2011

DIY: noodles and buttons galore {Table Time Fun}

While searching for some fun ways to practice fine motor and bilateral coordination skills, I came across this great DIY project/table game at Gratefully Growing in Grace.

The noodles are nice and thick - perfect for Grant to grasp and practice hand dexterity.

Simply take pool noodles and cut them into slices. Then, using a nylon rope, your child can practice stringing the noodle pieces together. You can also practice sequencing as well.

Easy-peasy! 
.................... 


I snuck a peek at Grant's last occupational therapy session and saw a neat idea of using over-sized buttons and pipe cleaners.


I couldn't find the large, plastic buttons like the OT had so I wandered around the craft section at WalMart and found flat wooden sports balls. I don't know what they are (they kind of look like small coasters), but after my hubby drilled holes in them they were perfect for the job. 

The idea of using pipe cleaners is what really grabbed my attention to this activity. They are little easier to string through the holes than yarn.

These two projects were inexpensive and took only minutes to put together. My kind of DIY project!

If you have any ideas of fun DIY projects or games that double as great learning activities, please share... I may feature it in a blog post!

August 18, 2011

Fragile X and Supplements: a new quest

There is no cure for Fragile X Syndrome and treatments are still in the research and clinical trial stages. Incredible discoveries and breakthroughs are being made but some days, especially on the difficult days, I get very impatient and wonder how much longer must we wait?

In the meantime, we try to give Grant all the therapy we can afford and pray that God will multiply our efforts. My latest quest has been to make sure Grant is on a good diet and getting all the vitamins/supplements he needs.
 
A long row of supplements we are trying.*




There isn't a lot of information out there specifically on Fragile X Syndrome and supplements (at least not all in one spot); however, there is an overabundant amount of information on Autism and supplements and you must be very careful what to rest your hat on, so to speak. I am skeptical by nature and have a scientific way of thinking (controlled environment evidence-based type of thinking), but when you have a child with special needs you are driven to step outside of the scientific box to try anything reasonable that might help.

Yes, I know that vitamins and minerals are technically science but "homeopathic remedies" are often considered, well, unconventional and unpopular.

Anyway.

As you can see from the picture above, we dove headfirst and have begun using various natural supplements. My mission is to discover which of them truly help Grant and which are a waste of money.

*Before I continue, let me say that I am NOT a doctor and that you should ALWAYS get approval from your child's doctor before using ANY supplement. That was step one for us.

It has been a costly quest. But hopefully it will be worth it if we can find vitamins/minerals that Grant's body needs and will help his development.

I am not comfortable sharing detailed information about any of the supplements at this time. If you want to begin your own supplement quest I suggest you begin researching, visit a Fragile X Clinic, join support groups like the Fragile X Natural Treatments Facebook group, and talk with other parents who have begun the journey before you. And, of course, get your doctor's blessing!

August 17, 2011

August 16, 2011

Top 10 phrases you hear at our house


10. That's not a chew - get a chew.

9.  What did Mommy just say?

8.  Serenity Now!!

7.  Use your fork not your fingers.

6.  It's your turn (referring to who gets to get up with Grant in the middle of the night).

5.  The Bible says love others. Hitting your brother is not loving him.

4.  I don't understand the language of whining/yelling/screaming... Use your words!

3.  Who wants to watch Signing Time?!

2.  Let's find out when Daddy is going to be home.

1.  What's in your mouth?!? Where did you find that? I just swept the floor!


Sometimes you just gotta laugh...


If I could add one more it definitely would be, "NO THROWING!!!!" We've been working on the "no throwing" thing forever. It's getting really old. I do find that signing what I am saying or holding up a picture helps. Gotta love visual cues!



Do you have a phrase you catch yourself frequently saying?

August 15, 2011

Giveaway Winner for Jesus Calling book


And the winner is... JENNA UNRUH


Congratulations to Jenna on winning the giveaway!

She will receive a copy of the book Jesus Calling by Sarah Young.

We had some problems with the comment section of the blog (which has been resolved) but a couple got through and more e-mailed great books/passages/verses that impacted them.

 Thank you to everyone who participated!


The winner is chosen via Random.org - a third party drawing website.

August 14, 2011

Forecasting Hope

Naturally I get excited whenever I see Fragile X Syndrome getting some press. I'm often amazed at the places it pops-up. Recently USA Today published a piece about the Weather Channel's Jim Cantore and his 25 years of dedication to storm chasing (so cool). I was sipping my early morning coffee and skimming the article when I read the short portion about Cantore's two children - who have Fragile X Syndrome. Wow! I had no idea.

(Click here to read Jim Cantore has weathered 25 year of chasing storms by By Jonathan Lebowitz, USA TODAY, August 9, 2011.)

I was impressed with how well Cantore summed up his encounter with Fragile X Syndrome. He called it "the storm that hurts the most and never goes away."

So true.

Cantore went on to say, "What my children have to deal with on a daily basis is by far more difficult than anything I will ever come in contact with."

Also true.

I am constantly amazed at how hard my son works. Tasks that are simple to us take more than twice the effort for Grant. I pray that someday things like eating, walking up and down stairs, putting on clothes, talking, and interacting with others will be easier for him.

Until then, I find comfort in knowing that I'm not alone in this journey.

(Now brace yourself for some sappiness...)

The forecast looks stormy but I think it's going to clear up and the "Son" is going to shine through. : )

August 12, 2011

Freebie Friday: Jesus Calling by Sarah Young

It's another giveaway! I am excited to give a copy of Jesus Calling by Sarah Young. (Please see entry rules below.)

Jesus Calling: Enjoying Peace in His  Presence - Devotions for Every Day of the Year  -     
        By: Sarah Young

I was given this devotional book by one of my aunts last October and I have been reading it ever since. As I said in my post on Wednesday (click here to read what I wrote on Worship Wednesday: look to the Master), there have been several days when this has book "spoken" to me. Its gentle words have convicted and uplifted me. Jesus Calling has been a great companion to my Bible reading and prayer time.

Here's how to enter:
  • Simply leave a comment on this blog post (below) that includes your name and e-mail address and briefly tell me about a book or passage that has "spoken" to you.
  • You have until 11:59pm EST on Sunday, August 14, 2011 to enter.
  • The winner will be notified via e-mail (that's when I'll obtain the physical mailing address) on Monday, August 15th. The winner will have three days to respond or a new winner will be drawn.
  • If, for some reason, you have a difficult time leaving a comment on this blog, you can e-mail the same information to me at akmayesblog@gmail.com (with the word "giveaway" in the subject box).

Become a follower/member of the blog to be the first to know when the next giveaway opportunity will pop-up!

August 11, 2011

The Toilet Training Saga: update 8/11/2011

Sometimes I feel like I'm on an episode of TLC's What Not To Wear - the part where they stick you in the 360 mirror and you get to see all your flaws up close. Only, for me, it's not my clothes that are being scrutinized. Instead it's my not-so-good attributes like pride, selfishness, and jealousy. And the mirror reflecting my flaws back at me is life's challenges... Very revealing.

   Wait - isn't this a toilet training update?

Yes it is. Who would have thought the struggles of toilet training my son with Fragile X Syndrome would lead to self-reflection.

To put it simply, the toilet training isn't happening. I have hit the pause button. The first day was terrible. It became clear within the first hour that I needed to step back and evaluate my approach.

(Click here to read my original thoughts on toilet training our oldest son.)

Instead of placing the huge burden on Grant's shoulders for him to learn the whole processes the same way a "typical" child would (all in the name of keeping expectations high), I decided to break it down.

Here is the revised plan:
  1. Learn how to push down and pull up pants, talk emphatically about wet and dry as we do diaper changes and wash hands, and learn more bathroom-related ASL signs.
  2. Learn how to push down and pull up underwear (we are going to use pull-up diapers to begin the process) and learn how to sit on the toilet (sit on the toilet first thing in the morning, after lunch, after nap, and before bedtime).
  3. Then sit and relax long enough to accomplish the mission. :)
  4. Follow a toilet schedule (something like 15 minutes on then 45 minutes off) and learn the concept of keeping the "underwear" dry.
  5. Keep pull-ups dry during the day.
  6. Graduate to underwear and probably repeat step number four for a little while.

This process makes much more sense for my family - for Grant.  In fact, as soon as I realigned my expectations I felt as if a big burden had been lifted from my shoulders.

   So what's this talk about self-reflection?

If you read my first post on the topic, Fragile X and Toilet Training, I had the attitude of "ready or not here we go". Well, Grant wasn't ready and it didn't go. The first few days were so stressful that Grant's speech began to regress and he was incredibly out-of-sorts. He was angry and confused. I was also extremely emotional and was taking it out on the rest of the family.

As pathetic as it sounds, I was floored that I couldn't MAKE Grant be ready. I simply had to accept that he wasn't. I felt wounded. Why? Because my pride had been attacked. I was trying to control something that wasn't mine to control. I wanted Grant to fit in with his friends who were being toilet trained and I wanted to prove that I was supermom.

How incredibly selfish of me.

I wasn't keeping Grant's best interests in mind. Sure, there was nothing wrong with testing and seeing if Grant was ready to be toilet trained, but my motives were all wrong. I had to remind myself that this isn't about me - it's all about my sweet son. I truly want him to succeed and be happy.

I still have high expectations for Grant. But I am keeping my motives in check. I have gained a new perspective. We will continue to work with Grant and toilet training but I must allow him to learn in the ways he needs to learn. After all, as many kindly reminded me, it's a marathon - not a sprint.

August 10, 2011

Worship Wednesday: look to the Master

Have you ever read an excerpt from a book, blog, or article and thought, Wow! That was written for me!

That's what happened when I read the August 7th devotion from Jesus Calling by Sarah Young (keep in mind this is written from the perspective of Jesus talking to you):
"Understanding will never bring you Peace. That's why I have instructed you to trust in Me, not in your understanding. Human beings have a voracious appetite for trying to figure things out, in order to gain a sense of mastery over their lives. But the world presents you with an endless series of problems. As soon as you master one set, another pops up to challenge you. The relief you had anticipated is short-lived. Soon your mind is gearing up again: searching for understanding (mastery), instead of seeking Me (your Master)...

...My Peace is not an elusive goal, hidden at the center of some complicated maze. Actually, you are always enveloped in Peace which is inherent in My Presence. As you look to Me, you gain awareness of this precious Peace."

Lord, please help me to lay down my exhausting-prideful-unproductive endeavors to become master over the challenges in my life. I need to seek You first and rest in the promise that you will supply my needs.

August 9, 2011

Quote Board: the desire of a boy's heart

I pulled Grant in and hugged him closely.

My precious son from above, I thought to myself.

I whispered softly, "Grant, Mommy loves you. If you could have anything right now what would it be?"

Grant immediately jumped up and yelled, "Ba-ball!! Moe. ba-ball. pease!"

[Translation: Baseball!! More baseball please!]

That's my Grant!



Grant loves baseball. He'll turn anything into a bat and hit the nearest ball.

August 8, 2011

The Glad Game

It goes without saying that the past few months have taught me many lessons. The reoccurring theme in all of the lessons has been to remain in a state of thankfulness - no matter how difficult the day.

...Easier said than done.

Unfortunately it's not like riding a bike. I have found that I must constantly practice the "skill" of keeping my heart joyful or it will quickly begin to sour. There is a game I like to play (don't laugh at me)... It's called the glad game (inspired by the 1960 movie with Hayley Mills titled Pollyannna). The rules are simply to count your blessings - and you can always find a blessing.

It works every time. As I shift the mental list-making from tallying every trial to counting every blessing, I begin to notice how even the smallest thing can bring a great feeling of thankfulness. I shed the sense of entitlement and am showered with the sensation of awe and gratefulness.

The other day as I was cleaning the kitchen, I began to look around and thank God for the things that landed in my line of vision: the dishwasher, a cool house to escape the summer heat, photosynthesis (random, I know - I saw the trees outside in our backyard and I've always been amazed at the intricate process of converting carbon dioxide to oxygen), a pantry with food in it, running water, etc...

Then my eyes landed on our entertainment center in the next room.  I couldn't help but to smile. Our entertainment center is a reminder of God's attention to the "less significant" needs in our family.

We used to have a cheap, flimsy entertainment center. My husband and I purchased it early in our marriage and it served us well in the beginning. But after eight years (I said it was cheap) it was way past its prime. It would sway when I dusted it and I would pray for my children's protection when they played nearby. (I'm not exaggerating. The thing was precarious.)

Our old entertainment center.
You know you need a new one when the doors are on for added stability and not for aesthetic reasons.
We began to pray for a way to buy a new home for our TV and DVDs. But, with the expenses related to Grant's needs, spending money on a new piece of furniture just didn't seem possible. Well, leave it to God to prove to us that he cares for all our needs - big and small.

To make a long story short, one day we got a call from a friend saying that their neighborhood was in the processes of redecorating the clubhouse. They were getting rid of the furniture and wanted to know if we were interested in buying the barely used entertainment center - with bookshelves - for $175.

We said yes.


And now we have a wonderful piece of furniture with a great lesson attached to it. :)

Oh give thanks to the Lord; call upon his name; make known his deeds among the peoples! 
Psalm 105:1

Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. Philippians 4:6

PS - If we ever have coffee together, ask me to tell you the whole story... it's pretty neat!

August 2, 2011

Another essential therapy tool...

Someone recently asked me what I think is the one key "tool" used in Grant's therapies. Several items immediately entered my mind: z-vibe, iPad, weighted vest, swings, books, medicine balls, therapy brush, modulated music (therapeutic listening therapy), picture scheduling/PECS, trampoline, etc...

I've talked about all those items on the blog but one thing I've never mentioned is a mirror.

After doing a few small upgrades to our powder room, we were left with a big, thick sheet mirror.
It has been put to good use.

Many of Grant's lessons take place in front of our big, sturdy mirror. He gets dressed, does speech/mouth exercises, and plays while watching his reflection. Because Grant learns best with visual cues, the mirror makes perfect prop.

Grant is learning how to grasp his pants firmly enough to pull them up.

We also use a smaller mirror for table exercises such as brushing teeth and eating.


Oh, and the large mirror made the perfect tummy time mirror for Wesley when he was a baby. :)

Wesley, four months old

August 31, 2011

Photos of the Month: August 2011

Snapshots of our life...


Few things separate Grant from his bat and ball

Grant and Aunt Lydia


 







Pin It

Wordless Wednesday: "Fixing" Autism


Please stop the blog music so you can get the full effect of the video below. You can stop the music by scrolling to the bottom of the web page and clicking the pause button. Thanks!






Pin It

August 30, 2011

Therapy Tuesday: Pop Rock Therapy

No, I am not suggesting putting in a Goo Goo Dolls CD and rocking out (though I can see how that would be therapeutic). I'm talking about the candy I discovered at summer camp when I was a little girl - the sickly sweet little pebbles that POP when they make contact with your tongue.


In my post last Thursday (Fragile X Syndrome and Eating - click here to read it) I mentioned one of the things I like to do to engage Grant's mouth muscles is use Pop Rocks.

A couple weeks ago I read an article by Tracy Stackhouse and Sarah “Mouse” Scharfenaker in The National Fragile X Foundation newsletter about mouth stuffing (excellent article - click here to read it). It suggested using Pop Rocks as input "to wake up that mouth and get those muscles activated".

Well, I tried it and Grant loved it. It was fun and something different. We've only been doing it a little while but I've seen immediate results when it comes to Grant's need to mouth [lick, chew, gnaw on] various objects.

One thing I don't like is the ingredients on the Pop Rocks package include artificial coloring - like red dye #40 - not that I'm surprised (red dye #40 can cause hyperactivity for children who struggle with ADHD). I tried to find a place where I could purchase organic Pop Rocks (if such a thing exists) online but my search was unsuccessful. Though I did find a recipe for Pop Rocks (click here)... We'll see if I can squeeze in enough time to try the recipe. In the meantime, I suppose a little bit is OK. :) It seems to be worth it.


If anyone finds a place where I can order organic pop rocks online, please send the link to me.


Pin It

August 29, 2011

Pack Rat

Wesley is my pack rat. If I'm missing something he's often a suspect. It's not uncommon for him to snatch an item and hide it somewhere. I'm pretty sure he's making sure my investigative skills stay sharp.

It all started when Wes was around 12 months old. While cleaning the house and searching for some random things that had gone missing (thinking I had misplaced them), I looked under one of the corners of our couch. There, neatly stashed, was a collection of miscellaneous items from around the house.

Later that day I saw Wesley walking around with a spoon. Thinking no one was watching him, he crouched down and shoved the spoon under the corner of the couch. I caught him in the act red-handed!

You never know when you open a door or look in a corner what you'll come across...





Pin It

August 25, 2011

Fragile X Syndrome and Eating

We have been working with Grant for several months (probably close to 18 months) to learn how to eat with a fork and spoon. It has been no small task. He tries very hard but because of his fine motor and oral motor planning issues he struggles to firmly grasp the utensil, rotate his wrist to scoop or stab the food, and then put the proper amount of food into his mouth.




Pictured above are all the forks and spoons we have tested. The last set (red) has thick, weighted handles. They make it easier for Grant to grasp and control his movements.


Unfortunately, even with special utensils, it is not uncommon for Grant to overfill his mouth, causing him to gag and choke at times. I have fine-tuned my Heimlich maneuver skills. Grant does not feel the food in his mouth the same way we do (hypotonia and Sensory Processing Disorder). Because of this, he often stuffs his mouth too full of food to get the sensation that his mouth is full enough.




We use mirrors to show him how full his mouth is and to encourage him to eat properly. Sometimes the mirror helps, but it can be a distraction too. We also use a z-vibe and pop rocks to wake up his mouth muscles/nerves before eating (a habit I need to get back into consistently).


After several months of coaching him to eat without using his fingers, Grant still looks like this when he is eating. :) It is a work in progress.


We were having lunch with friends when this picture was taken. While we were eating, Grant's friend kept saying "orange, orange". We didn't know what he was talking until we looked at Grant. Yes, Grant's face was definitely orange.
Pin It

August 22, 2011

New Page: Why Red Letter Living?


Ever wonder what Red Letter Living means? Or where the blog title came from?

Find out by clicking {here} or on the page button at the top.

Have a great Monday!




Pin It

August 19, 2011

DIY: noodles and buttons galore {Table Time Fun}

While searching for some fun ways to practice fine motor and bilateral coordination skills, I came across this great DIY project/table game at Gratefully Growing in Grace.

The noodles are nice and thick - perfect for Grant to grasp and practice hand dexterity.

Simply take pool noodles and cut them into slices. Then, using a nylon rope, your child can practice stringing the noodle pieces together. You can also practice sequencing as well.

Easy-peasy! 
.................... 


I snuck a peek at Grant's last occupational therapy session and saw a neat idea of using over-sized buttons and pipe cleaners.


I couldn't find the large, plastic buttons like the OT had so I wandered around the craft section at WalMart and found flat wooden sports balls. I don't know what they are (they kind of look like small coasters), but after my hubby drilled holes in them they were perfect for the job. 

The idea of using pipe cleaners is what really grabbed my attention to this activity. They are little easier to string through the holes than yarn.

These two projects were inexpensive and took only minutes to put together. My kind of DIY project!

If you have any ideas of fun DIY projects or games that double as great learning activities, please share... I may feature it in a blog post!
Pin It

August 18, 2011

Fragile X and Supplements: a new quest

There is no cure for Fragile X Syndrome and treatments are still in the research and clinical trial stages. Incredible discoveries and breakthroughs are being made but some days, especially on the difficult days, I get very impatient and wonder how much longer must we wait?

In the meantime, we try to give Grant all the therapy we can afford and pray that God will multiply our efforts. My latest quest has been to make sure Grant is on a good diet and getting all the vitamins/supplements he needs.
 
A long row of supplements we are trying.*




There isn't a lot of information out there specifically on Fragile X Syndrome and supplements (at least not all in one spot); however, there is an overabundant amount of information on Autism and supplements and you must be very careful what to rest your hat on, so to speak. I am skeptical by nature and have a scientific way of thinking (controlled environment evidence-based type of thinking), but when you have a child with special needs you are driven to step outside of the scientific box to try anything reasonable that might help.

Yes, I know that vitamins and minerals are technically science but "homeopathic remedies" are often considered, well, unconventional and unpopular.

Anyway.

As you can see from the picture above, we dove headfirst and have begun using various natural supplements. My mission is to discover which of them truly help Grant and which are a waste of money.

*Before I continue, let me say that I am NOT a doctor and that you should ALWAYS get approval from your child's doctor before using ANY supplement. That was step one for us.

It has been a costly quest. But hopefully it will be worth it if we can find vitamins/minerals that Grant's body needs and will help his development.

I am not comfortable sharing detailed information about any of the supplements at this time. If you want to begin your own supplement quest I suggest you begin researching, visit a Fragile X Clinic, join support groups like the Fragile X Natural Treatments Facebook group, and talk with other parents who have begun the journey before you. And, of course, get your doctor's blessing!
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August 17, 2011

Wordless Wednesday: then and now

October 2001

August 2011

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August 16, 2011

Top 10 phrases you hear at our house


10. That's not a chew - get a chew.

9.  What did Mommy just say?

8.  Serenity Now!!

7.  Use your fork not your fingers.

6.  It's your turn (referring to who gets to get up with Grant in the middle of the night).

5.  The Bible says love others. Hitting your brother is not loving him.

4.  I don't understand the language of whining/yelling/screaming... Use your words!

3.  Who wants to watch Signing Time?!

2.  Let's find out when Daddy is going to be home.

1.  What's in your mouth?!? Where did you find that? I just swept the floor!


Sometimes you just gotta laugh...


If I could add one more it definitely would be, "NO THROWING!!!!" We've been working on the "no throwing" thing forever. It's getting really old. I do find that signing what I am saying or holding up a picture helps. Gotta love visual cues!



Do you have a phrase you catch yourself frequently saying?

Pin It

August 15, 2011

Giveaway Winner for Jesus Calling book


And the winner is... JENNA UNRUH


Congratulations to Jenna on winning the giveaway!

She will receive a copy of the book Jesus Calling by Sarah Young.

We had some problems with the comment section of the blog (which has been resolved) but a couple got through and more e-mailed great books/passages/verses that impacted them.

 Thank you to everyone who participated!


The winner is chosen via Random.org - a third party drawing website.
Pin It

August 14, 2011

Forecasting Hope

Naturally I get excited whenever I see Fragile X Syndrome getting some press. I'm often amazed at the places it pops-up. Recently USA Today published a piece about the Weather Channel's Jim Cantore and his 25 years of dedication to storm chasing (so cool). I was sipping my early morning coffee and skimming the article when I read the short portion about Cantore's two children - who have Fragile X Syndrome. Wow! I had no idea.

(Click here to read Jim Cantore has weathered 25 year of chasing storms by By Jonathan Lebowitz, USA TODAY, August 9, 2011.)

I was impressed with how well Cantore summed up his encounter with Fragile X Syndrome. He called it "the storm that hurts the most and never goes away."

So true.

Cantore went on to say, "What my children have to deal with on a daily basis is by far more difficult than anything I will ever come in contact with."

Also true.

I am constantly amazed at how hard my son works. Tasks that are simple to us take more than twice the effort for Grant. I pray that someday things like eating, walking up and down stairs, putting on clothes, talking, and interacting with others will be easier for him.

Until then, I find comfort in knowing that I'm not alone in this journey.

(Now brace yourself for some sappiness...)

The forecast looks stormy but I think it's going to clear up and the "Son" is going to shine through. : )
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August 12, 2011

Freebie Friday: Jesus Calling by Sarah Young

It's another giveaway! I am excited to give a copy of Jesus Calling by Sarah Young. (Please see entry rules below.)

Jesus Calling: Enjoying Peace in His  Presence - Devotions for Every Day of the Year  -     
        By: Sarah Young

I was given this devotional book by one of my aunts last October and I have been reading it ever since. As I said in my post on Wednesday (click here to read what I wrote on Worship Wednesday: look to the Master), there have been several days when this has book "spoken" to me. Its gentle words have convicted and uplifted me. Jesus Calling has been a great companion to my Bible reading and prayer time.

Here's how to enter:
  • Simply leave a comment on this blog post (below) that includes your name and e-mail address and briefly tell me about a book or passage that has "spoken" to you.
  • You have until 11:59pm EST on Sunday, August 14, 2011 to enter.
  • The winner will be notified via e-mail (that's when I'll obtain the physical mailing address) on Monday, August 15th. The winner will have three days to respond or a new winner will be drawn.
  • If, for some reason, you have a difficult time leaving a comment on this blog, you can e-mail the same information to me at akmayesblog@gmail.com (with the word "giveaway" in the subject box).

Become a follower/member of the blog to be the first to know when the next giveaway opportunity will pop-up!
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August 11, 2011

The Toilet Training Saga: update 8/11/2011

Sometimes I feel like I'm on an episode of TLC's What Not To Wear - the part where they stick you in the 360 mirror and you get to see all your flaws up close. Only, for me, it's not my clothes that are being scrutinized. Instead it's my not-so-good attributes like pride, selfishness, and jealousy. And the mirror reflecting my flaws back at me is life's challenges... Very revealing.

   Wait - isn't this a toilet training update?

Yes it is. Who would have thought the struggles of toilet training my son with Fragile X Syndrome would lead to self-reflection.

To put it simply, the toilet training isn't happening. I have hit the pause button. The first day was terrible. It became clear within the first hour that I needed to step back and evaluate my approach.

(Click here to read my original thoughts on toilet training our oldest son.)

Instead of placing the huge burden on Grant's shoulders for him to learn the whole processes the same way a "typical" child would (all in the name of keeping expectations high), I decided to break it down.

Here is the revised plan:
  1. Learn how to push down and pull up pants, talk emphatically about wet and dry as we do diaper changes and wash hands, and learn more bathroom-related ASL signs.
  2. Learn how to push down and pull up underwear (we are going to use pull-up diapers to begin the process) and learn how to sit on the toilet (sit on the toilet first thing in the morning, after lunch, after nap, and before bedtime).
  3. Then sit and relax long enough to accomplish the mission. :)
  4. Follow a toilet schedule (something like 15 minutes on then 45 minutes off) and learn the concept of keeping the "underwear" dry.
  5. Keep pull-ups dry during the day.
  6. Graduate to underwear and probably repeat step number four for a little while.

This process makes much more sense for my family - for Grant.  In fact, as soon as I realigned my expectations I felt as if a big burden had been lifted from my shoulders.

   So what's this talk about self-reflection?

If you read my first post on the topic, Fragile X and Toilet Training, I had the attitude of "ready or not here we go". Well, Grant wasn't ready and it didn't go. The first few days were so stressful that Grant's speech began to regress and he was incredibly out-of-sorts. He was angry and confused. I was also extremely emotional and was taking it out on the rest of the family.

As pathetic as it sounds, I was floored that I couldn't MAKE Grant be ready. I simply had to accept that he wasn't. I felt wounded. Why? Because my pride had been attacked. I was trying to control something that wasn't mine to control. I wanted Grant to fit in with his friends who were being toilet trained and I wanted to prove that I was supermom.

How incredibly selfish of me.

I wasn't keeping Grant's best interests in mind. Sure, there was nothing wrong with testing and seeing if Grant was ready to be toilet trained, but my motives were all wrong. I had to remind myself that this isn't about me - it's all about my sweet son. I truly want him to succeed and be happy.

I still have high expectations for Grant. But I am keeping my motives in check. I have gained a new perspective. We will continue to work with Grant and toilet training but I must allow him to learn in the ways he needs to learn. After all, as many kindly reminded me, it's a marathon - not a sprint.
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August 10, 2011

Worship Wednesday: look to the Master

Have you ever read an excerpt from a book, blog, or article and thought, Wow! That was written for me!

That's what happened when I read the August 7th devotion from Jesus Calling by Sarah Young (keep in mind this is written from the perspective of Jesus talking to you):
"Understanding will never bring you Peace. That's why I have instructed you to trust in Me, not in your understanding. Human beings have a voracious appetite for trying to figure things out, in order to gain a sense of mastery over their lives. But the world presents you with an endless series of problems. As soon as you master one set, another pops up to challenge you. The relief you had anticipated is short-lived. Soon your mind is gearing up again: searching for understanding (mastery), instead of seeking Me (your Master)...

...My Peace is not an elusive goal, hidden at the center of some complicated maze. Actually, you are always enveloped in Peace which is inherent in My Presence. As you look to Me, you gain awareness of this precious Peace."

Lord, please help me to lay down my exhausting-prideful-unproductive endeavors to become master over the challenges in my life. I need to seek You first and rest in the promise that you will supply my needs.
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August 9, 2011

Quote Board: the desire of a boy's heart

I pulled Grant in and hugged him closely.

My precious son from above, I thought to myself.

I whispered softly, "Grant, Mommy loves you. If you could have anything right now what would it be?"

Grant immediately jumped up and yelled, "Ba-ball!! Moe. ba-ball. pease!"

[Translation: Baseball!! More baseball please!]

That's my Grant!



Grant loves baseball. He'll turn anything into a bat and hit the nearest ball.

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August 8, 2011

The Glad Game

It goes without saying that the past few months have taught me many lessons. The reoccurring theme in all of the lessons has been to remain in a state of thankfulness - no matter how difficult the day.

...Easier said than done.

Unfortunately it's not like riding a bike. I have found that I must constantly practice the "skill" of keeping my heart joyful or it will quickly begin to sour. There is a game I like to play (don't laugh at me)... It's called the glad game (inspired by the 1960 movie with Hayley Mills titled Pollyannna). The rules are simply to count your blessings - and you can always find a blessing.

It works every time. As I shift the mental list-making from tallying every trial to counting every blessing, I begin to notice how even the smallest thing can bring a great feeling of thankfulness. I shed the sense of entitlement and am showered with the sensation of awe and gratefulness.

The other day as I was cleaning the kitchen, I began to look around and thank God for the things that landed in my line of vision: the dishwasher, a cool house to escape the summer heat, photosynthesis (random, I know - I saw the trees outside in our backyard and I've always been amazed at the intricate process of converting carbon dioxide to oxygen), a pantry with food in it, running water, etc...

Then my eyes landed on our entertainment center in the next room.  I couldn't help but to smile. Our entertainment center is a reminder of God's attention to the "less significant" needs in our family.

We used to have a cheap, flimsy entertainment center. My husband and I purchased it early in our marriage and it served us well in the beginning. But after eight years (I said it was cheap) it was way past its prime. It would sway when I dusted it and I would pray for my children's protection when they played nearby. (I'm not exaggerating. The thing was precarious.)

Our old entertainment center.
You know you need a new one when the doors are on for added stability and not for aesthetic reasons.
We began to pray for a way to buy a new home for our TV and DVDs. But, with the expenses related to Grant's needs, spending money on a new piece of furniture just didn't seem possible. Well, leave it to God to prove to us that he cares for all our needs - big and small.

To make a long story short, one day we got a call from a friend saying that their neighborhood was in the processes of redecorating the clubhouse. They were getting rid of the furniture and wanted to know if we were interested in buying the barely used entertainment center - with bookshelves - for $175.

We said yes.


And now we have a wonderful piece of furniture with a great lesson attached to it. :)

Oh give thanks to the Lord; call upon his name; make known his deeds among the peoples! 
Psalm 105:1

Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. Philippians 4:6

PS - If we ever have coffee together, ask me to tell you the whole story... it's pretty neat!

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August 3, 2011

Wordless Wednesday: a walk down memory lane


  


 

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August 2, 2011

Another essential therapy tool...

Someone recently asked me what I think is the one key "tool" used in Grant's therapies. Several items immediately entered my mind: z-vibe, iPad, weighted vest, swings, books, medicine balls, therapy brush, modulated music (therapeutic listening therapy), picture scheduling/PECS, trampoline, etc...

I've talked about all those items on the blog but one thing I've never mentioned is a mirror.

After doing a few small upgrades to our powder room, we were left with a big, thick sheet mirror.
It has been put to good use.

Many of Grant's lessons take place in front of our big, sturdy mirror. He gets dressed, does speech/mouth exercises, and plays while watching his reflection. Because Grant learns best with visual cues, the mirror makes perfect prop.

Grant is learning how to grasp his pants firmly enough to pull them up.

We also use a smaller mirror for table exercises such as brushing teeth and eating.


Oh, and the large mirror made the perfect tummy time mirror for Wesley when he was a baby. :)

Wesley, four months old


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