July 31, 2011

Photos of the Month: July 2011

Independence Day! Every year we look forward to the Waxhaw Fourth of July Parade. There is nothing better than small town festivities. Fire trucks, horses, motorcycles, floats, candy, dogs and people watching - Grant loved it all.
Wesley preferred to watch the entertaining procession while being by Mommy, Aunt Lydia, or Grandma. He enjoyed much of the parade but his favorites were the horses and dogs. 

The quaint and picturesque wooden bridge in Waxhaw... Watching a train pass through was the perfect finale.
The three grandchildren - oldest to youngest.
Wesley enjoying one summer's finest - an ice cream cone.
The boys enjoy jumping together on the trampoline. I'll let you guess which one is the blur. :)
Grant loves the big Curious George book. I melt every time Grant grabs my hand, leads me to the bookcase and says, "Geoge." I pull the book down and place it on the little table where Grant sifts through the pages, scrutinizing every detail.

What's a hot summer day without a little water? The boys kept running back for more as Aaron showered them with the hose.
Again - what's summer without water?

July 28, 2011

I lay my hand on my mouth

After spending time with some good friends, I got into our car and quickly buckled my seat belt. The kids were laughing in their car seats as Aaron started the car. Noticing I was quiet, Aaron asked, "Something wrong?"

I took a deep breath and replied, "It was hard to see Grant's friend talking and playing so well. I guess it was just another reminder of how far behind Grant really is and it got to me - all over again. It was hard to see Grant so unfocused and yelling like that."

Aaron drove a little while and then said, "I guess I've just gotten used to it. I've accepted it. It doesn't bother me much anymore."

I thought to myself, when will it no longer bother me? Have I not accepted Grant's condition? Wait - do I want to accept Grant's condition?

The past few days have been a little more trying than usual. My life's table has been piled high with miscellaneous cutter:
  • Trying to begin toilet training Grant - who is showing no desire to be toilet trained :)
  • Grieving about missing out on a family reunion I desperately wanted to attend
  • Watching Grant's speech regress a little
  • Preparing for some major changes that are about to take place for our family
  • Trying to iron out some health insurance issues
  • Resolving some problems with Grant's therapy
  • Preparing for Grant's preschool evaluation and for his first IEP (Individualized Education Program/Plan)
  • Researching some alternative therapy and supplements for Grant and presenting it to one of his doctors
  • Falling behind on housework

Through all of this my gazed shifted from looking above to looking down at my surrounding issues. I have been focusing on my problems and not on my Savior. Once again I have been tempted to question God's sovereignty and purpose for our life .

However, no matter how many times I wander, time and time again God leads me back to His fold and I relive the words Job spoke in Job 40:3-5:

Then Job answered the LORD and said, “Behold, I am insignificant; what can I reply to You? I lay my hand on my mouth. Once I have spoken, and I will not answer; Even twice, and I will add nothing more.”

I lay my hand on my mouth. I love those words. In times of great personal struggle I often quote that phrase to myself. I am tempted to say things that I regret and trap myself in thick quicksand of self-pity. My self-pity belittles God's strength and all the amazing support we have received from family, friends, and our church. I don't want to be a grumbler or a whiner.

"Shall we indeed accept the good from God and not accept adversity?" ... Another great reminder from Job. (Job 2:10)

I have much to be thankful for! As I begin to count my blessings, I find my chin being lifted upwards and again I find my hope in God's eternal promises.

I lift up my eyes to the hills. From where does my help come? Psalm 121:1

To You I lift up my eyes, O You who are enthroned in the heavens! Psalm 123:1

Lift your eyes and look to the heavens: Who created all these? He who brings out the starry host one by one, and calls them each by name. Because of his great power and mighty strength, not one of them is missing. Isaiah 40:26

July 26, 2011

And the winner is...

Congratulations to APRIL WOOTEN on winning this blog's first ever giveaway!

She will receive a copy of the book Fragile X Fragile Hope: Finding Joy In Parenting A Child with Special Needs by Elizabeth Griffin.

I received some great notes of inspiration via the blog and via e-mail. Thank you to everyone to participated!

This is a beautiful book reflecting everything I feel on a daily basis. I love the poignant quotes and inspiring scripture verses that are woven throughout the pages. I began to type a few excerpts to share but stopped as I realized I was basically just typing up the whole book. :)

It is an easy read and worth the purchase - a great book to own and to give away. I think every pastor, teacher, and special needs specialist should read this book. It is a window into the world of a family learning to cope, hope, and live with the realities that come with having a special needs child.

July 25, 2011

Fragile X and Toilet Training

Here we go! We have decided to begin toilet training Grant. We've gathered all the supplies and I have read several special needs books. Today is the day. (Gulp!)

Toilet training is a big undertaking for any parent (and child) but having a child who has developmental delays, sensory issues, and motor planning difficulties heightens the challenge.

Challenge number one: Is Grant developmentally ready?

In November 2010 Grant was 26 months old but, through testing, was concluded to have an IQ of an 18 month old. Nine months have passed and I am hoping he has an IQ of at least a 22 to 24 month old. So, at this point, I am guessing that Grant is about a year behind developmentally. (His IQ will be tested again in September when we visit the Duke Fragile X Clinic.)

Challenge number two: What can Grant feel?

Because of his Sensory Processing Disorder (SPD), Grant struggles to feel the same sensations we do - or at least at the same level we do. A big piece of this training will be to teach him how to feel the need to use the toilet. Some of that comes with age and development and some of it can be taught. We're about to find out how much of it can be taught.

Challenge number three: First this, then that...

In addition to developmental delays and SPD, Grant struggles with motor planning. In other words, when Grant is given a task it can be difficult for him to break down the individual steps it takes to complete the task. This can be helped with repetition, verbal cues, social stories, and picture scheduling/sequencing.

Using the Bathroom


Washing Hands
Here are great examples of bathroom picture schedules. You can find these, along with others, at http://www.do2learn.com/.

We are being a bit aggressive in our timing but I am determined to keep our expectations high. There is a fine balance between expecting much of Grant and acknowledging his syndrome. While we accept Fragile X Syndrome will always be a big part of Grant life (a huge understatement), we refuse to limit our hopes and dreams for him. This may sound silly, but I believe toilet training is a great foundation for the many successes Grant will have.

I have no idea how long the process of toilet training will take - two weeks, two months, two years?!? I do know that we are going to take it one day at a time. And I'm sure we'll have some stories to share along the way. To be continued...

Any helpful tips? Please pass them on!

July 22, 2011

Freebie Friday: Fragile X Fragile Hope book

Today, in honor of the 12th annual National Fragile X Awareness Day, I am hosting my first ever giveaway!

I am giving away a copy of the book Fragile X Fragile Hope: Finding Joy In Parenting A Child with Special Needs by Elizabeth Griffin. (Please see entry rules below.)

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 person in your life who has been an inspiration.
  • You have until 11:59pm EST on Sunday, July 24, 2011 to enter.
  • The winner will be notified via e-mail (that's when I'll obtain the physical mailing address) on Monday, July 25th. 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! :)

12th Annual Fragile X Awareness Day!


Click here to read a short blurb about Grant and other children with Fragile X on the National Fragile X Foundation Website.

July 19, 2011

New Weighted Vest

Grant received his new weighted vest!  He outgrew the weight of the other vest and needed a heavier one.


A local church ministry called Wrapped in Love sews weighted items for children with sensory needs (click here to read more about the benefits of weighted items for sensory integration). Sometimes the ministry sews a vest from scratch but often they use a vest (either provided by a parent or purchased from a consignment store/sale) and modify it with pockets of weight pellets following a specific formula that takes the child's weight into account. What a blessing!


A great example of people using their talents to help others!

July 18, 2011

Update: 7/18/2011

Grant: There has been a lot of change for Grant. Because the clinic Grant's therapists work for decided not to renew its contract with the CDSA, we were forced to find all new therapists - FAST (I was informed a mere two weeks before the contract expired). It was quite a scramble. I desperately did not want a laps in Grant's services and it was important to find an agency that would take our health insurance. It was hard to say good-bye to all of Grant's therapists but I decided from the moment I heard the news that I would look at it in the best light possible. Grant is young enough to handle the transition and it will be good to get some fresh perspective on Grant's progress. Unfortunately, with the short notice I received to find new therapists (speech, physical, and occupational), combined with the fact that people are taking summer vacations now, there has been a small laps in services. Please pray that we can get a firm therapy schedule in place and that the new therapists will be as aggressive as I want them to be (I have high expectations for Grant and need the therapists to get on board quickly).

We are also praying for wisdom on how to provide another very specific therapy for Grant. We believe Grant needs ABA therapy (Applied Behavioral Analysis). It is a therapy most children with autism get. However, because Grant has been diagnosed with Fragile X Syndrome and not autism (see Our Story), ABA therapy is not covered. While the therapy is very expensive, it has a huge track record of being extremely beneficial for children with autism and related disorders (like Fragile X). So, we are trying to do the best we can with what we have. Grant is continuing to progress and we are very thankful for that.

One more thing... we got the date for Grant's appointment at the Duke University Fragile X Clinic!!! We will be traveling up to Durham at the end of September for the much anticipated appointment. We are excited to receive helpful insight. I feel like I have been clawing for information and help thus far. Grant will be intensely evaluated and we will be counseled by two amazing doctors who have dedicated themselves to Fragile X. Hopefully we can get some answers to our many questions!

Wesley: I can't believe he's 16 months old already. I can hardly keep up with the little guy. It has been fun seeing him develop and watch his personality emerge. It seems like he is picking up a new word every day (the latest being "No!"). He is a great influence on Grant and it is a joy to watch the two play together. They are already close brothers and friends. Wesley is most definitely stubborn and has a strong-will nature about him. He is spunky and often has a mischievous sparkle in his eyes. Wesley is always doing something to make us laugh. His eating still is an area of concern (the boy just doesn't like to each much), but his doctor said that it is nothing to be alarmed about... yet. Wesley is active and has "good diapers" :) so we will just continue seeking and trying creative tactics to fill his tummy.

Grant and Wesley love Sadie-kitty. Thankfully the boys have come a long way in learning to be gentle and she is incredibly patient with them.

Aaron: Aaron has been trying to get as many painting hours in as physically possible. He has even worked many double shifts this summer (praise God for providing all the job opportunities so that Aaron can work the extra hours!). It is because of Aaron's work ethic I am able to be at home with the boys. Even after he has worked a long day, Aaron finds the energy to wrestle with the boys. He is an active dad and husband who eagerly spends time playing the boys and often helps me around the house. I am blessed beyond measure. Aaron is already gearing up for another school year; checking out art books from the library and reviewing lesson plans.

Karen: I recently ordered a couple books on ABA therapy. I am planning to educate myself on the subject so I can provide the therapy on my own as much as possible. Most children who receive ABA therapy from a specialist spend several hours each day in a session. Naturally, I will not be able to focus that intensely on the therapy but I have begun to pray that God will multiply my efforts. Between all of the normal housework and taking care of two energetic children, I attempt to squeeze an adequate amount of therapy time for Grant. Just as God multiplied the small amount of bread and fish to feed a multitude, I know He can supply our needs and multiply the benefits Grant is receiving though his current therapy. We serve a great God!

July 12, 2011

Brushing and Joint Pressure Input

We have been doing therapeutic brushing, as I call it, for over a year now. Some days I give it a very favorable review and other days it is more difficult to discern its level of impact. When your child is involved with multiple therapies it can be hard to determine which of them are actually benefiting the most... so we keep doing as much as we can! However, because each child is unique, I would say that it's definitely worth trying.*

Therapeutic brushing, technically called the Wilbarger Brushing Protocol (or, more recently, technically called The Wilbarger Deep Pressure and Proprioceptive Technique), has very rigid guidelines one must follow. I wouldn't say it's complicated but a special brush must be used while using certain brush strokes and you must stick to a very specific schedule.

Our thera-pressure brush
When we began, I was instructed by a specialist to do the following:
  • Use the brush certified for the therapy
  • Brush Grant every 90 minutes to two hours (to brush him more frequently is not good for the nerves - over-stimulation)
  • Brush arms, hands, legs, feet, and back
  • Brush Grant using a specific "rhythm" of brush strokes and do not go over the same area
  • Do not brush him too close to nap time or bed time (ie: the last brush session needs to be at 6pm for Grant's 8pm bedtime)
  • End each brush session with series of pressure input "thumps" for Grant's joints and ligaments 

Below is a video I found on YouTube that does a great job showing the most common way to conduct a therapeutic brushing session. (FYI: Before viewing the video, you will want to pause the blog music by scrolling to the bottom of blog and selecting the appropriate button.)


What is the purpose to the brushing? OT-Innovations.com explains it well:

Based on the theory of Sensory Integration, the DPPT [Deep Pressure and Proprioceptive Technique] uses a prescriptive method of providing stimulation to help the mind-brain-body self-organize.

Some of the benefits of the DPPT may include:
  • An improved ability to transition between various daily activities
  • An improvement in the ability to pay attention
  • A decreased fear and discomfort of being touched (tactile defensiveness)
  • An increase in the ability of the central nervous system to use information from the peripheral nervous system more effectively, resulting in enhanced movement coordination, functional communication, sensory modulation, and hence, self-regulation.
We have weaned Grant off of the two hour schedule and now he is brushed only a couple times each day; once when he wakes up in the morning and right after nap time. I will sometimes include a brushing session a couple of hours before bed time if he is showing signs of being more "out-of-sorts" that day.

*Please note: training is absolutely necessary before attempting to use this technique in practice. Use requires a trained therapist otherwise harmful or ineffective influences may be the result.

Click here for more reading about the Wilbarger Protocol for Sensory Integration (The Wilbarger DPPT Protocol Basics begins about halfway down the SPD Companion web page).

July 11, 2011

DIY: Homemade (Condensed) Cream of Mushroom Soup

In last Thursday's post, Fragile X and Food: please hold the MSG, I talked about a couple dietary changes we have tried and how I adamantly avoid MSG because of its affects on Grant.

One product I have missed because it is in some of my favorite childhood recipes is condensed cream of mushroom soup. Fortunately there is a remedy... make it from scratch!

My mom passed on a website that has great step-by-step instructions on how to make homemade cream of mushroom soup. The website is http://amysfinerthings.com/homemade-cream-of-mushroom-soup.

There are a couple adjustments I made to the recipe. First, I coarsely chopped the mushrooms instead of slicing them - just a personal preference.


Next, after sautéing the mushrooms and setting the extra aside to freeze, I added only 1 and 1/2 cups of milk*. The additional milk instructed in the recipe is to make the actual cream of mushroom soup - not the condensed form I like to use in various recipes.


I followed the rest of the recipe exactly as instructed and it turned out great!


Homemade condensed cream of mushroom soup in a pint size jar.

To quote Amy (from The Finer Things In Life blog), Just another example of 'if you can buy it, you can probably make it (better)!'

Note added July 12, 2011: To make the recipe gluten free, simply replace the 1/2 cup of flour with 1/4 cup of cornstarch. Be sure to add the cornstarch to the milk - versus adding the milk to the flour roux in the original recipe. (Thanks for the tips Gloria Klassen and Bernice Penner!)


Homemade Cream of Mushroom Soup

1/4 cup sliced mushrooms, sautéed in butter
2 Tbsp. butter
1/2 cup flour (replace with 1/4 cup of cornstarch for a gluten free version)
4 cups milk (*I only used 1 and 1/2 cups of milk to make "condensed" cream of mushroom)
1 tsp. salt
1/2 tsp. pepper
1 tsp parsley

To make cream of mushroom soup, simply sauté the contents of one bag with an additional 2 tbsp. butter. Mix 1/2 cup flour with 1 1/2 cups milk until smooth. Slowly add to mushrooms, whisking constantly. Then slowly add another 2 1/2 cups of milk. Whisk until smooth and bubbly. Add 1 tsp. salt, 1/2 tsp. pepper, and 1 tsp. parsley flakes. Remove from heat. Soup will thicken as it cools. Feel free to add more milk to reach desired consistency.

July 8, 2011

Fabulous Find: Eye Can Learn


Grant's occupational therapist told me about the website http://www.eyecanlearn.com/. It helps children with their visual tracking skills - perception, tracking, focus, and eye teaming.










Because of Grant's desire for visual stimulation, he loves the tracking eye games. His favorites are the Clown Jumps, Rabbit JumpsFlitting Butterfly, and Bouncing Ball (you can click on the titles I've listed to go straight to those games). I also like the memory game. Some of the games are too advanced for Grant but there are plenty to engage him now.

Check out http://www.eyecanlearn.com/!

July 7, 2011

Fragile X and Food: please hold the MSG

Children with Fragile X Syndrome and related disorders often struggle with dietary issues. One of the first things we did when we suspected Grant had autism (see Our Story), was to eliminate gluten and casein from his diet.

Gluten is a protein consisting of a mixture of glutelin and gliadin, present in cereal grains, especially wheat. Casein is a phosphoprotein, precipitated from milk by the action of rennin, forming the basis of cheese. [Definitions are from dictionary.com.]

Pasta and cheese, along with the common items you see above, are some of the many things eliminated in a gluten-free and casein-free diet. Fortunately, there are many products available now that are gluten-free and some that are casein-free as well.
Some children with Fragile X Syndrome and/or Autism struggle with gastrointestinal issues. One popular dietary move is to eliminate gluten and casein from their diets. Many parents and specialists have reported that it can improve the child's health (ie: reduce stomach aches), increase the ability to focus, and decrease the number of tantrums. It is a lot of work, but if it helps the child it is worth it.

This special diet does not help everyone. Grant was 18 months old when we tried the diet. He was definitely showing a lack of focus but was not having any meltdowns. After trying the diet for two months, I saw no changes in Grant's demeanor. (While many parents have reported seeing results within two weeks, I was told that one must try the diet for at least four to six weeks to know for sure if it will work.)

Wes and Grant having a snack. Grant is eating one of his favorite snacks - plantain chips from Trader Joe's.
A couple things we have and will continue to eliminate from Grant's diet are products that contain dye (especially red #40) and all products that have MSG (Monosodium glutamate - also known as sodium glutamate). These additives can cause a spike in hyperactivity (and, therefore, a lack of focus) in children who have ADHD (Attention Deficit Hyperactivity Disorder - one the symptoms of Fragile X Syndrome).

It wasn't difficult to cut-out dyes as I prefer to cook from scratch and many products use natural dyes that come from food. I do, however, have to be conscientious about MSG. It is in many products (ie: cream of mushroom soup and some seasonings). Also, there are some ingredients that go by a different name but are related to MSG - or at least they are additives that are very similar to MSG. These additives are hydrolyzed corn protein and autolyzed yeast extract (you can learn more at MSG Exposed).

There are so many dimensions to having a child with special needs but I am thrilled when there are tangible ways that I can help my son.

I am always interested to hear about dietary changes or improvements others have taken that have proven helpful. Please share your story with me.

July 5, 2011

Five on Five: July 5, 2011

Five random photos of our day...

The very first thing the boys HAD to do this morning (after being gone all weekend) was swing on the swing set. The cloud cover and fog made it a very cool and pleasant morning so we stayed outside as long as we could.

The heavy morning dew looked like little crystals when the morning sun peaked through our trees.

Because I never get to see my baby sleeping any more (he is a very light sleeper) - much less sitting still - I had to capture the moment one more time.


One of my favorite past times: working in one of my little gardens.

July 4, 2011

How it began

It's finally finished!

Click on the page tab titled Our Story to read a brief synopsis on our family's journey thus far.


Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths. Proverbs 3:5

July 2, 2011

Update: Grant's EEG Results

{A little update to blog posts Prayer Request: Grant's EEG and Follow Up: Grant's EEG.}

Grant had another appointment with the neurologist last week and during this appointment she shared her thoughts about the EEG. After reviewing his brain activity recorded over the 24-hour period she said that Grant's baseline brain activity was normal. This is a very good indicator that Grant is not having seizures.

PRAISE THE LORD!

She did go on to say that it would have been best, of course, to capture a stare-off to know for sure but we can breath a little easier knowing that the baseline activity is normal.

So, we will continue to watch for stare-offs and pray that Grant does not have or develop seizures. In the meantime, we are rejoicing over the good news.

Thank you for your prayers!

July 31, 2011

Photos of the Month: July 2011

Independence Day! Every year we look forward to the Waxhaw Fourth of July Parade. There is nothing better than small town festivities. Fire trucks, horses, motorcycles, floats, candy, dogs and people watching - Grant loved it all.
Wesley preferred to watch the entertaining procession while being by Mommy, Aunt Lydia, or Grandma. He enjoyed much of the parade but his favorites were the horses and dogs. 

The quaint and picturesque wooden bridge in Waxhaw... Watching a train pass through was the perfect finale.
The three grandchildren - oldest to youngest.
Wesley enjoying one summer's finest - an ice cream cone.
The boys enjoy jumping together on the trampoline. I'll let you guess which one is the blur. :)
Grant loves the big Curious George book. I melt every time Grant grabs my hand, leads me to the bookcase and says, "Geoge." I pull the book down and place it on the little table where Grant sifts through the pages, scrutinizing every detail.

What's a hot summer day without a little water? The boys kept running back for more as Aaron showered them with the hose.
Again - what's summer without water?

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July 28, 2011

I lay my hand on my mouth

After spending time with some good friends, I got into our car and quickly buckled my seat belt. The kids were laughing in their car seats as Aaron started the car. Noticing I was quiet, Aaron asked, "Something wrong?"

I took a deep breath and replied, "It was hard to see Grant's friend talking and playing so well. I guess it was just another reminder of how far behind Grant really is and it got to me - all over again. It was hard to see Grant so unfocused and yelling like that."

Aaron drove a little while and then said, "I guess I've just gotten used to it. I've accepted it. It doesn't bother me much anymore."

I thought to myself, when will it no longer bother me? Have I not accepted Grant's condition? Wait - do I want to accept Grant's condition?

The past few days have been a little more trying than usual. My life's table has been piled high with miscellaneous cutter:
  • Trying to begin toilet training Grant - who is showing no desire to be toilet trained :)
  • Grieving about missing out on a family reunion I desperately wanted to attend
  • Watching Grant's speech regress a little
  • Preparing for some major changes that are about to take place for our family
  • Trying to iron out some health insurance issues
  • Resolving some problems with Grant's therapy
  • Preparing for Grant's preschool evaluation and for his first IEP (Individualized Education Program/Plan)
  • Researching some alternative therapy and supplements for Grant and presenting it to one of his doctors
  • Falling behind on housework

Through all of this my gazed shifted from looking above to looking down at my surrounding issues. I have been focusing on my problems and not on my Savior. Once again I have been tempted to question God's sovereignty and purpose for our life .

However, no matter how many times I wander, time and time again God leads me back to His fold and I relive the words Job spoke in Job 40:3-5:

Then Job answered the LORD and said, “Behold, I am insignificant; what can I reply to You? I lay my hand on my mouth. Once I have spoken, and I will not answer; Even twice, and I will add nothing more.”

I lay my hand on my mouth. I love those words. In times of great personal struggle I often quote that phrase to myself. I am tempted to say things that I regret and trap myself in thick quicksand of self-pity. My self-pity belittles God's strength and all the amazing support we have received from family, friends, and our church. I don't want to be a grumbler or a whiner.

"Shall we indeed accept the good from God and not accept adversity?" ... Another great reminder from Job. (Job 2:10)

I have much to be thankful for! As I begin to count my blessings, I find my chin being lifted upwards and again I find my hope in God's eternal promises.

I lift up my eyes to the hills. From where does my help come? Psalm 121:1

To You I lift up my eyes, O You who are enthroned in the heavens! Psalm 123:1

Lift your eyes and look to the heavens: Who created all these? He who brings out the starry host one by one, and calls them each by name. Because of his great power and mighty strength, not one of them is missing. Isaiah 40:26


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July 27, 2011

Wordless Wednesday: Wesley helping unpack the groceries


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July 26, 2011

And the winner is...

Congratulations to APRIL WOOTEN on winning this blog's first ever giveaway!

She will receive a copy of the book Fragile X Fragile Hope: Finding Joy In Parenting A Child with Special Needs by Elizabeth Griffin.

I received some great notes of inspiration via the blog and via e-mail. Thank you to everyone to participated!

This is a beautiful book reflecting everything I feel on a daily basis. I love the poignant quotes and inspiring scripture verses that are woven throughout the pages. I began to type a few excerpts to share but stopped as I realized I was basically just typing up the whole book. :)

It is an easy read and worth the purchase - a great book to own and to give away. I think every pastor, teacher, and special needs specialist should read this book. It is a window into the world of a family learning to cope, hope, and live with the realities that come with having a special needs child.
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July 25, 2011

Fragile X and Toilet Training

Here we go! We have decided to begin toilet training Grant. We've gathered all the supplies and I have read several special needs books. Today is the day. (Gulp!)

Toilet training is a big undertaking for any parent (and child) but having a child who has developmental delays, sensory issues, and motor planning difficulties heightens the challenge.

Challenge number one: Is Grant developmentally ready?

In November 2010 Grant was 26 months old but, through testing, was concluded to have an IQ of an 18 month old. Nine months have passed and I am hoping he has an IQ of at least a 22 to 24 month old. So, at this point, I am guessing that Grant is about a year behind developmentally. (His IQ will be tested again in September when we visit the Duke Fragile X Clinic.)

Challenge number two: What can Grant feel?

Because of his Sensory Processing Disorder (SPD), Grant struggles to feel the same sensations we do - or at least at the same level we do. A big piece of this training will be to teach him how to feel the need to use the toilet. Some of that comes with age and development and some of it can be taught. We're about to find out how much of it can be taught.

Challenge number three: First this, then that...

In addition to developmental delays and SPD, Grant struggles with motor planning. In other words, when Grant is given a task it can be difficult for him to break down the individual steps it takes to complete the task. This can be helped with repetition, verbal cues, social stories, and picture scheduling/sequencing.

Using the Bathroom


Washing Hands
Here are great examples of bathroom picture schedules. You can find these, along with others, at http://www.do2learn.com/.

We are being a bit aggressive in our timing but I am determined to keep our expectations high. There is a fine balance between expecting much of Grant and acknowledging his syndrome. While we accept Fragile X Syndrome will always be a big part of Grant life (a huge understatement), we refuse to limit our hopes and dreams for him. This may sound silly, but I believe toilet training is a great foundation for the many successes Grant will have.

I have no idea how long the process of toilet training will take - two weeks, two months, two years?!? I do know that we are going to take it one day at a time. And I'm sure we'll have some stories to share along the way. To be continued...

Any helpful tips? Please pass them on!
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July 22, 2011

Freebie Friday: Fragile X Fragile Hope book

Today, in honor of the 12th annual National Fragile X Awareness Day, I am hosting my first ever giveaway!

I am giving away a copy of the book Fragile X Fragile Hope: Finding Joy In Parenting A Child with Special Needs by Elizabeth Griffin. (Please see entry rules below.)

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 person in your life who has been an inspiration.
  • You have until 11:59pm EST on Sunday, July 24, 2011 to enter.
  • The winner will be notified via e-mail (that's when I'll obtain the physical mailing address) on Monday, July 25th. 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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12th Annual Fragile X Awareness Day!


Click here to read a short blurb about Grant and other children with Fragile X on the National Fragile X Foundation Website.
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July 20, 2011

Wordless Wednesday: nine years of marriage!


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July 19, 2011

New Weighted Vest

Grant received his new weighted vest!  He outgrew the weight of the other vest and needed a heavier one.


A local church ministry called Wrapped in Love sews weighted items for children with sensory needs (click here to read more about the benefits of weighted items for sensory integration). Sometimes the ministry sews a vest from scratch but often they use a vest (either provided by a parent or purchased from a consignment store/sale) and modify it with pockets of weight pellets following a specific formula that takes the child's weight into account. What a blessing!


A great example of people using their talents to help others!
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July 18, 2011

Update: 7/18/2011

Grant: There has been a lot of change for Grant. Because the clinic Grant's therapists work for decided not to renew its contract with the CDSA, we were forced to find all new therapists - FAST (I was informed a mere two weeks before the contract expired). It was quite a scramble. I desperately did not want a laps in Grant's services and it was important to find an agency that would take our health insurance. It was hard to say good-bye to all of Grant's therapists but I decided from the moment I heard the news that I would look at it in the best light possible. Grant is young enough to handle the transition and it will be good to get some fresh perspective on Grant's progress. Unfortunately, with the short notice I received to find new therapists (speech, physical, and occupational), combined with the fact that people are taking summer vacations now, there has been a small laps in services. Please pray that we can get a firm therapy schedule in place and that the new therapists will be as aggressive as I want them to be (I have high expectations for Grant and need the therapists to get on board quickly).

We are also praying for wisdom on how to provide another very specific therapy for Grant. We believe Grant needs ABA therapy (Applied Behavioral Analysis). It is a therapy most children with autism get. However, because Grant has been diagnosed with Fragile X Syndrome and not autism (see Our Story), ABA therapy is not covered. While the therapy is very expensive, it has a huge track record of being extremely beneficial for children with autism and related disorders (like Fragile X). So, we are trying to do the best we can with what we have. Grant is continuing to progress and we are very thankful for that.

One more thing... we got the date for Grant's appointment at the Duke University Fragile X Clinic!!! We will be traveling up to Durham at the end of September for the much anticipated appointment. We are excited to receive helpful insight. I feel like I have been clawing for information and help thus far. Grant will be intensely evaluated and we will be counseled by two amazing doctors who have dedicated themselves to Fragile X. Hopefully we can get some answers to our many questions!

Wesley: I can't believe he's 16 months old already. I can hardly keep up with the little guy. It has been fun seeing him develop and watch his personality emerge. It seems like he is picking up a new word every day (the latest being "No!"). He is a great influence on Grant and it is a joy to watch the two play together. They are already close brothers and friends. Wesley is most definitely stubborn and has a strong-will nature about him. He is spunky and often has a mischievous sparkle in his eyes. Wesley is always doing something to make us laugh. His eating still is an area of concern (the boy just doesn't like to each much), but his doctor said that it is nothing to be alarmed about... yet. Wesley is active and has "good diapers" :) so we will just continue seeking and trying creative tactics to fill his tummy.

Grant and Wesley love Sadie-kitty. Thankfully the boys have come a long way in learning to be gentle and she is incredibly patient with them.

Aaron: Aaron has been trying to get as many painting hours in as physically possible. He has even worked many double shifts this summer (praise God for providing all the job opportunities so that Aaron can work the extra hours!). It is because of Aaron's work ethic I am able to be at home with the boys. Even after he has worked a long day, Aaron finds the energy to wrestle with the boys. He is an active dad and husband who eagerly spends time playing the boys and often helps me around the house. I am blessed beyond measure. Aaron is already gearing up for another school year; checking out art books from the library and reviewing lesson plans.

Karen: I recently ordered a couple books on ABA therapy. I am planning to educate myself on the subject so I can provide the therapy on my own as much as possible. Most children who receive ABA therapy from a specialist spend several hours each day in a session. Naturally, I will not be able to focus that intensely on the therapy but I have begun to pray that God will multiply my efforts. Between all of the normal housework and taking care of two energetic children, I attempt to squeeze an adequate amount of therapy time for Grant. Just as God multiplied the small amount of bread and fish to feed a multitude, I know He can supply our needs and multiply the benefits Grant is receiving though his current therapy. We serve a great God!
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July 16, 2011

Sleepy Saturday Morning: daddy and the boys


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July 12, 2011

Brushing and Joint Pressure Input

We have been doing therapeutic brushing, as I call it, for over a year now. Some days I give it a very favorable review and other days it is more difficult to discern its level of impact. When your child is involved with multiple therapies it can be hard to determine which of them are actually benefiting the most... so we keep doing as much as we can! However, because each child is unique, I would say that it's definitely worth trying.*

Therapeutic brushing, technically called the Wilbarger Brushing Protocol (or, more recently, technically called The Wilbarger Deep Pressure and Proprioceptive Technique), has very rigid guidelines one must follow. I wouldn't say it's complicated but a special brush must be used while using certain brush strokes and you must stick to a very specific schedule.

Our thera-pressure brush
When we began, I was instructed by a specialist to do the following:
  • Use the brush certified for the therapy
  • Brush Grant every 90 minutes to two hours (to brush him more frequently is not good for the nerves - over-stimulation)
  • Brush arms, hands, legs, feet, and back
  • Brush Grant using a specific "rhythm" of brush strokes and do not go over the same area
  • Do not brush him too close to nap time or bed time (ie: the last brush session needs to be at 6pm for Grant's 8pm bedtime)
  • End each brush session with series of pressure input "thumps" for Grant's joints and ligaments 

Below is a video I found on YouTube that does a great job showing the most common way to conduct a therapeutic brushing session. (FYI: Before viewing the video, you will want to pause the blog music by scrolling to the bottom of blog and selecting the appropriate button.)


What is the purpose to the brushing? OT-Innovations.com explains it well:

Based on the theory of Sensory Integration, the DPPT [Deep Pressure and Proprioceptive Technique] uses a prescriptive method of providing stimulation to help the mind-brain-body self-organize.

Some of the benefits of the DPPT may include:
  • An improved ability to transition between various daily activities
  • An improvement in the ability to pay attention
  • A decreased fear and discomfort of being touched (tactile defensiveness)
  • An increase in the ability of the central nervous system to use information from the peripheral nervous system more effectively, resulting in enhanced movement coordination, functional communication, sensory modulation, and hence, self-regulation.
We have weaned Grant off of the two hour schedule and now he is brushed only a couple times each day; once when he wakes up in the morning and right after nap time. I will sometimes include a brushing session a couple of hours before bed time if he is showing signs of being more "out-of-sorts" that day.

*Please note: training is absolutely necessary before attempting to use this technique in practice. Use requires a trained therapist otherwise harmful or ineffective influences may be the result.

Click here for more reading about the Wilbarger Protocol for Sensory Integration (The Wilbarger DPPT Protocol Basics begins about halfway down the SPD Companion web page).


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July 11, 2011

DIY: Homemade (Condensed) Cream of Mushroom Soup

In last Thursday's post, Fragile X and Food: please hold the MSG, I talked about a couple dietary changes we have tried and how I adamantly avoid MSG because of its affects on Grant.

One product I have missed because it is in some of my favorite childhood recipes is condensed cream of mushroom soup. Fortunately there is a remedy... make it from scratch!

My mom passed on a website that has great step-by-step instructions on how to make homemade cream of mushroom soup. The website is http://amysfinerthings.com/homemade-cream-of-mushroom-soup.

There are a couple adjustments I made to the recipe. First, I coarsely chopped the mushrooms instead of slicing them - just a personal preference.


Next, after sautéing the mushrooms and setting the extra aside to freeze, I added only 1 and 1/2 cups of milk*. The additional milk instructed in the recipe is to make the actual cream of mushroom soup - not the condensed form I like to use in various recipes.


I followed the rest of the recipe exactly as instructed and it turned out great!


Homemade condensed cream of mushroom soup in a pint size jar.

To quote Amy (from The Finer Things In Life blog), Just another example of 'if you can buy it, you can probably make it (better)!'

Note added July 12, 2011: To make the recipe gluten free, simply replace the 1/2 cup of flour with 1/4 cup of cornstarch. Be sure to add the cornstarch to the milk - versus adding the milk to the flour roux in the original recipe. (Thanks for the tips Gloria Klassen and Bernice Penner!)


Homemade Cream of Mushroom Soup

1/4 cup sliced mushrooms, sautéed in butter
2 Tbsp. butter
1/2 cup flour (replace with 1/4 cup of cornstarch for a gluten free version)
4 cups milk (*I only used 1 and 1/2 cups of milk to make "condensed" cream of mushroom)
1 tsp. salt
1/2 tsp. pepper
1 tsp parsley

To make cream of mushroom soup, simply sauté the contents of one bag with an additional 2 tbsp. butter. Mix 1/2 cup flour with 1 1/2 cups milk until smooth. Slowly add to mushrooms, whisking constantly. Then slowly add another 2 1/2 cups of milk. Whisk until smooth and bubbly. Add 1 tsp. salt, 1/2 tsp. pepper, and 1 tsp. parsley flakes. Remove from heat. Soup will thicken as it cools. Feel free to add more milk to reach desired consistency.
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July 8, 2011

Fabulous Find: Eye Can Learn


Grant's occupational therapist told me about the website http://www.eyecanlearn.com/. It helps children with their visual tracking skills - perception, tracking, focus, and eye teaming.










Because of Grant's desire for visual stimulation, he loves the tracking eye games. His favorites are the Clown Jumps, Rabbit JumpsFlitting Butterfly, and Bouncing Ball (you can click on the titles I've listed to go straight to those games). I also like the memory game. Some of the games are too advanced for Grant but there are plenty to engage him now.

Check out http://www.eyecanlearn.com/!
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July 7, 2011

Fragile X and Food: please hold the MSG

Children with Fragile X Syndrome and related disorders often struggle with dietary issues. One of the first things we did when we suspected Grant had autism (see Our Story), was to eliminate gluten and casein from his diet.

Gluten is a protein consisting of a mixture of glutelin and gliadin, present in cereal grains, especially wheat. Casein is a phosphoprotein, precipitated from milk by the action of rennin, forming the basis of cheese. [Definitions are from dictionary.com.]

Pasta and cheese, along with the common items you see above, are some of the many things eliminated in a gluten-free and casein-free diet. Fortunately, there are many products available now that are gluten-free and some that are casein-free as well.
Some children with Fragile X Syndrome and/or Autism struggle with gastrointestinal issues. One popular dietary move is to eliminate gluten and casein from their diets. Many parents and specialists have reported that it can improve the child's health (ie: reduce stomach aches), increase the ability to focus, and decrease the number of tantrums. It is a lot of work, but if it helps the child it is worth it.

This special diet does not help everyone. Grant was 18 months old when we tried the diet. He was definitely showing a lack of focus but was not having any meltdowns. After trying the diet for two months, I saw no changes in Grant's demeanor. (While many parents have reported seeing results within two weeks, I was told that one must try the diet for at least four to six weeks to know for sure if it will work.)

Wes and Grant having a snack. Grant is eating one of his favorite snacks - plantain chips from Trader Joe's.
A couple things we have and will continue to eliminate from Grant's diet are products that contain dye (especially red #40) and all products that have MSG (Monosodium glutamate - also known as sodium glutamate). These additives can cause a spike in hyperactivity (and, therefore, a lack of focus) in children who have ADHD (Attention Deficit Hyperactivity Disorder - one the symptoms of Fragile X Syndrome).

It wasn't difficult to cut-out dyes as I prefer to cook from scratch and many products use natural dyes that come from food. I do, however, have to be conscientious about MSG. It is in many products (ie: cream of mushroom soup and some seasonings). Also, there are some ingredients that go by a different name but are related to MSG - or at least they are additives that are very similar to MSG. These additives are hydrolyzed corn protein and autolyzed yeast extract (you can learn more at MSG Exposed).

There are so many dimensions to having a child with special needs but I am thrilled when there are tangible ways that I can help my son.

I am always interested to hear about dietary changes or improvements others have taken that have proven helpful. Please share your story with me.
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July 6, 2011

Wordless Wednesday: flashback - one year ago


 


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July 5, 2011

Five on Five: July 5, 2011

Five random photos of our day...

The very first thing the boys HAD to do this morning (after being gone all weekend) was swing on the swing set. The cloud cover and fog made it a very cool and pleasant morning so we stayed outside as long as we could.

The heavy morning dew looked like little crystals when the morning sun peaked through our trees.

Because I never get to see my baby sleeping any more (he is a very light sleeper) - much less sitting still - I had to capture the moment one more time.


One of my favorite past times: working in one of my little gardens.


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July 4, 2011

How it began

It's finally finished!

Click on the page tab titled Our Story to read a brief synopsis on our family's journey thus far.


Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths. Proverbs 3:5
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July 2, 2011

Update: Grant's EEG Results

{A little update to blog posts Prayer Request: Grant's EEG and Follow Up: Grant's EEG.}

Grant had another appointment with the neurologist last week and during this appointment she shared her thoughts about the EEG. After reviewing his brain activity recorded over the 24-hour period she said that Grant's baseline brain activity was normal. This is a very good indicator that Grant is not having seizures.

PRAISE THE LORD!

She did go on to say that it would have been best, of course, to capture a stare-off to know for sure but we can breath a little easier knowing that the baseline activity is normal.

So, we will continue to watch for stare-offs and pray that Grant does not have or develop seizures. In the meantime, we are rejoicing over the good news.

Thank you for your prayers!


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