Prayer Request: Duke Fragile X Clinic

I am stealing a few minutes to write a quick post... there is lots to do to get ready for our trip!

This evening we will be driving to Durham for Grant's appointment at the Duke Fragile X Clinic. By traveling up the night before, we are hoping to ensure that Grant will be rested and in a good mood for the four hour appointment on Friday (instead of spending all morning in the car and then going straight to the testing which is scheduled right at his nap time). We are very grateful to wonderful friends who have secured a hotel room for us to stay. What generosity - thank you! And thank you to my fabulous sister-in-law who is delaying her vacation so she can watch Wesley.

Please pray...

• the drive will go smoothly and our car will remain reliable
• that Grant will get a good and FULL night of sleep
• for Grant to heal quickly from his cold and that it will not affect his ability to participate in the testing activities
• that the appointment will be everything we hope it to be - insightful, full of helpful information and suggestions, and encouraging. I am also hoping they can determine if Grant needs an autism diagnosis in addition to his Fragile X Syndrome diagnosis
• that we will feel uplifted after the appointment. Appointments like this tend to weigh heavily on me and take a day for me to emotionally recuperate - it still is difficult to hear everything Grant does and will struggle with
• that God will be glorified through this appointment

For it is you who light my lamp; the Lord my God lightens my darkness. Psalm 18:28

Rainy days...

... are for rolling up pants and splashing in puddles!

After the rain...

Five Minute Friday: Growing

Pushing past the darkness, surrounded by dirt, it aches to reach the light. Desiring to fulfill its singular purpose, the delicate life stretches out its leaves and embraces the sunlight.

     I also ache to push past the darkness that surrounds me

sadness, disappointment, fear, pain, regret, lies, things of this world

     I long to fulfill my purpose

to produce fruits of love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control

to glorify my Maker

     I desire to grow in my faith 

to be sanctified

.................. 

This post was written as part of Five Minute Friday. Check it out and join us!

And the winner is... {Temple Grandin DVD}

Ashley from Indiana! Congratulations!

She will receive a copy of the DVD movie Temple Grandin.

Thank you to everyone who participated!

I truly wish I could give a copy to everyone who entered but I urge you, if you haven't seen it yet, to please take the time to watch the amazing, true story. 

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

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!

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Temple Grandin (Trailer)

Click here to watch a clip of Temple Grandin talking about the movie.

The Path {a short story}

As I made my way down the serene path, I paused to smell the most delicate flower I had ever seen. Its sweet fragrance lingered, intoxicating my whole body. I felt the soft sun soak into my skin as I looked around. The path was full of beauty.

I smiled and said to myself, Yes, I have chosen the perfect path for my life. It will be full of comfort and happiness. The leaves on the surrounding trees seemed to clap their approval as a gentle breeze danced through them.

I began to continue my journey when a voice called out to me. I turned and saw a man with a kind face emerge from the woods.

Dear child. I need to you follow me. A different path has been chosen for you. 

I stopped. Excuse me? A different path? Fear gripped me and I retorted, Kind sir, you must be mistaken. You see I have planned this path with great detail. It is perfect for me. It is all I have ever wanted. The path you are pointing to is rocky and full of uncertainty. 

With patience the kind man answered back, It is true. At times the path will be very difficult. But do not fear, I will help you.

I began to cry. Hopelessness enveloped me, squeezing the breath from my lungs. Overcome by sadness, I fell to my knees and began to plead, No - not me. Please, not me. All I have ever wanted is a path like the one I have planned. I want to experience joy and love and peace.

Seeming to understand my pain, the kind man responded with tears in his eyes, Oh my dear child. Yes, the path I have chosen will take you through challenging times, but I will never leave or forsake you. I have walked this path before you. I know the way. I know where it will take you. The hardships you will face will produce the fullest joy, the purest love, and a peace beyond understanding. And, in time, you will see its beauty. 

I looked deep into the kind man's eyes and saw a glimpse of the path laid-out for me. I saw a supportive family, friends holding my hands, and a Savior carrying me through the deep waters.

I took the man's scarred hand and said, Yes, I will follow.

'For I know the plans I have for you,' declares the LORD,

'plans to prosper you and not to harm you, plans to give you hope and a future.' 

Jeremiah 29:11 

When you pass through the waters, I will be with you; and through the rivers,

they shall not overwhelm you; when you walk through fire you shall not be burned,

and the flame shall not consume you.

Isaiah 43:2

Wordless Wednesday: exploring the backyard

 

 

 

If all else fails, have a smoothie

Grant is not a breakfast eater. He'll eat nearly anything you put in front of him the rest of the day but he'd rather just skip breakfast (unless it's bacon). I know that breakfast is the most important meal of the day but I never worried much because I knew by morning snack time Grant would be ready to eat.

Well, now that Grant is about to start preschool, I want him to have something more in his stomach before beginning his long day away from my care. The past few days I have again explored many different breakfast (and non-breakfast) foods but all he wants is his milk.

Then, last night, I watched an episode of The Dr. Oz Show and he mentioned that everyone should have 30 grams of protein within 30 minutes of waking up. One thing he highly recommended that fit that criteria was a breakfast smoothly with Greek yogurt, almonds, and berries. BINGO! I found my solution! Throw in Grant's morning vitamins and I think we have winner.

I tested it out this morning and both boys drank their smoothies in record time. I love that this is something that Grant can drink on the way to school. I will continue to try feeding Grant breakfast but it will be a lot less stressful knowing that he will have his smoothie to drink.

In addition to the Greek yogurt, almonds, and berries, I added some strawberry Kefir - which has probiotics and is high in protein - and a banana.

Bonus: Sipping from a straw is great sensory input (it really calms Grant) and is a good tool in Oral-Motor Therapy

Part I: Straws - Using Simple Tools in Oral-Motor Therapy

the R word

Let no corrupting talk come out of your mouths,

but only such as is good for building up, as fits the occasion,

that it may give grace to those who hear.

 Ephesians 4:29

A gentle tongue is a tree of life,

but perverseness in it breaks the spirit. 

Proverbs 15:4

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!

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"Retarded." YouTube video

Take a stand. Take the pledge.

Freebie Friday: Temple Grandin {DVD}

I watched the movie, Temple Grandin, for the first time a week ago and I cannot say enough good things about it. There were many times when I fought back tears because I was moved by the courageous life of Temple (a high-functioning autistic woman who overcame the limitations imposed on her by her condition to become an expert in the field of animal husbandry), her mom, and all those who stood up for her - who saw that she was "different - but not less".

While watching the movie I saw aspects of Grant in Temple Grandin. I felt a feeling of relief knowing that this movie would allow others a glimpse into my son's world. 

For those who have children with Autism or children with autistic-like traits (like Fragile X Syndrome), it means so much that this movie has been made (and made very well).

Please watch this movie.

With all that said, I am giving away a copy of the movie!

Here's how to enter:

• In the comments section (scroll down or click here), simply leave your name, e-mail address, and your favorite movie snack (I personally love popcorn and a diet coke as I relax on the couch with a blanket).
• Enter by 11:59pm EST on Thursday, September 22, 2011
• The winner will be notified via e-mail (that's when I'll obtain the physical mailing address) on Friday, September 23, 2011. 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).

**BONUS** If you would like to be entered TWICE in the giveaway, start spreading the news!  Simply share my blog via Facebook, your own blog, twitter, or email & you'll double your chances of winning!  Just be sure to tell me in your comment what you did so that I can apply it.

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!

Temple Grandin (Trailer)


Click here to watch a clip of Temple Grandin talking about the movie.

Fragile X Syndrome {Video}

This is a fantastic video that does a great job of briefly explaining Fragile X Syndrome. Please take a moment to watch.

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!

 

Dr. Sally Rosengren speaks on Fragile X Syndrome

a watermelon summer finale

 

 

  ... and a little t-ball action

The First IEP Meeting: follow up

This is a follow up to the post The First IEP Meeting. Click here to read it.


It went pretty well. Everyone (the case manager, play facilitator, psychologist, OT, PT, and ST*) was very nice and kindly asked my input concerning the evaluation results and looked to me for approval on the IEP goals that had been written.

The Evaluation Feedback

In order for Grant to be enrolled in the CMS special needs preschool program, he needed to be evaluated to determine his current developmental level.

Because he was given the Bayley-III less than a year ago and because he will be evaluated in a couple weeks when we go to the Duke Fragile X Clinic, they did not conduct the {IQ} test during the CMS evaluation. But they captured enough information to make my stomach churn as I, once again, heard everything that Grant struggles with and falls short in.

It's nothing new. I know it. I've heard it several times now. I see it every day. But it is still so very hard to hear. Maybe someday I will be able to hear that kind of feedback without needing a full day to mourn... anyway... I digress.

Needless to say, Grant qualifies for the CMS special needs preschool program.

The Goals

I definitely learned one very valuable lesson: get a copy of the IEP goals ahead of time! I didn't know I had the right (and I didn't have the foresight) to request a copy ahead of time. During the meeting I was so caught up in hearing what the specialists/evaluators had to say, I had a difficult time methodically thinking through the goals (thank-goodness I at least had Grant's Positive Student Profile - see below).

With all that said, I am pleased with the goals. They are a great place to start. I just wish I could have offered a little more input with a couple of them. Oh well. Like a said, a valuable lesson learned. I don't feel the need to have the goals amended - yet. Hopefully Grant will make great strides and in six months we can revisit and add to the goals.

What's Next?

I was told that I would hear from the CMS placement office this week to find out which school Grant will attend and what teacher and therapists he will have. We may have a standard home visit from them as well.

Please pray that Grant will get placed at the school that is closest to us and that his teacher/teacher's assistant/therapists will have tender hearts, follow the IEP, and will be compatible with his learning style.

Positive Student Profile Packet

I received wonderful feedback on the Positive Student Profile packet. It was a great way to share my thoughts on my son and educate others on Fragile X Syndrome.

After my last post, I was asked by several readers to list the articles I used in the packet. The articles are listed below (click on the titles to download your own copy). I have also included again the link for the profile (please note the second page is a great example of how to complete the form).

• Postive Student Profile - I don't know who first created this document but it is fabulous!
• Strategies for day-to-day life by Tracy Murnan Stockhouse and Sarah Scharfenaker
• Sensory Integration Concepts and Fragile X Syndrome by Tracy Murnan Stockhouse
• Fragile X Syndrome and Autism: Common Developmental Pathways? by Kim Cornish, Jeremy Turk and Andrew Levitas (FYI: I think the first column on Table 1, page four, should be labeled "Fragile X Syndrome".)
• I also included a FRAXA.org brochure that does a great job explaining Fragile X Syndrome

There are at least a dozen more articles I found that I could have included, but decided I better keep it to three. There is a wealth of wonderful, helpful information out there. If you come across any articles that would be good to include, please send them to me!


*Terms used in this blog post

IEP:  Individual Education Plan - for children with special needs in a school environment 
OT:  Occupational Therapist 
PT:  Physical Therapist 
ST:  Speech Therapist 
CMS:  Charlotte-Mecklenburg Schools 
Bayley-III: Bayley Scales of Infant and Toddler Development, third edition - a common test/tool used for identifying, measuring, and assessing a child's development 
Positive Student Profile: a form to provide a “snapshot” of a child which should be reflected in his or her IEP

A time to celebrate

A child of laughter

A boy with dreams

A caring brother

A son who is dearly loved

Grant

You have taught us how to embrace each day to the fullest.

Happy 3rd Birthday!

Time flies...

It was hard to say good-bye to my parents yesterday. We had a wonderful time together and it went by way too quickly. It was a luxury to have them around for a whole week.

My dad was great with the boys. With the weather as beautiful as it was, he spend a lot of time with them outside - pushing them on the swing, going for walks, and fixing things around the house and yard. They loved it!

My mom and I had a great time chatting, working in the kitchen, and watching the movie The Help together. She also took care of the boys so I could get a few things accomplished around the house. My mom is a great cook and bakes the most amazing things. This time she made incredible homemade doughnuts.

Yummmm!

Fabulous Find: Newell Farmers Market

I'm not sure which influences my love for farmers markets more...

... the sweet memories of growing up on a small family farm in Minnesota that yearly had a big garden bursting with fresh vegetables, the want-to-be health nut and mom-of-two who desires to cook and bake with quality foods, the capitalist in me who is determined to support local businesses, or the romantic in me who enjoys carrying a hand-basket while feeling the sun on my back as I sift through quality produce...

I guess it is all of them put together.

Which is why I decided to visit Newell Farmers Market just a handful of miles from my house. I had seen signs for the market a few months back but finally took the time to stop by with my mom Saturday morning.

It was a small market but I was not disappointed with the choices. And everyone was very kind and personable. I will definitely be going back.

 

I was excited when I saw they sell grass fed, hormone free, free range meat and dairy products. According to Go Natural Charlotte, they also sell hand spun/dyed fibers and homemade soap.

The farmers market will be closing for a month while the owners switch over to their fall produce. I assure you I will arrive early on October 15th when it reopens.

If you live near the university area of Charlotte, Newell Farmers Market is worth checking out. You can find them on Facebook by clicking here.

The First IEP Meeting

It has finally come.

The last meeting of three with the local school district is on Friday. I have been told that during this meeting I will find out the results of Grant's recent evaluation (the assessment of Grant's developmental progress), learn of his placement (how many days a week he will go to preschool, which school he will attend, and what therapy he will receive), and establish his IEP (Individualized Education Plan).

I have heard horror stories about IEP meetings - from both sides of the table. The parents say the goals are not good enough or they not being properly/effectively carried out and the teachers/administration say the expectations of the parents are unrealistic and it's just another meeting they have to attend - or something like that.

I can already feel the tension and we haven't even begun.

I do not want to walk into the meeting with negative expectations or a bad attitude and I am hoping the other participants sitting around the table will avoid the same. Great teachers do exist (lots of them). I am praying Grant will be paired with one of them, that the goals will be appropriate, and that we will all do our part to help Grant succeed.

It is possible. Right?

Say yes.

I created a packet of information for the meeting and for Grant's file that includes:

• a cover page with pictures of Grant doing some of his favorite things
• a Positive Student Profile 
• an information page about Fragile X Syndrome
• a few articles that discuss various aspects of Fragile X Syndrome (learning styles, Sensory Processing Disorder, etc)

I pray the information helps. Because of limited resources and lack of understanding about Fragile X Syndrome, I have been warned that I may need to fight hard to get what I know is best for Grant.

I am ready.


Click here to read the follow up to Grant's first IEP meeting.

Wordless Wednesday: date night {random snapshots}