Photos of the Month: June 2011

Wesley's first corn on the cob. He ate it like a pro and wanted more.

In early June my daylilies bloomed... I love daylilies.

Make a joyful noise! When Wesley and Grant got a hold of my measuring cups it sure was noisy and it was definitely joyful. :)

Wesley has become quite the climber - a climber who has no fear. He thought it would be funny to do a little dance on top of the slide and watch my reaction (as I was racing across the lawn to catch him as he fell).

Grant looks so comfortable I just had to take a picture.

I love it when the boys do things together. They are both working on button art while Grant is doing is Therapeutic Listening Therapy.

Summers are for having family fun in the backyard and playing in the pool.

DIY: Sensory Texture Boards

It's no joke how much you can spend on toys and educational items for your child - special needs or not. So, I am out on the hunt for do-it-yourself projects that are easy, provide great educational input for my boys, and don't rely too much on my pocketbook.

Texture boards are a great place to start. With a few inexpensive supplies (most of which you probably already have lying around the house), you can make a fun and sensory-happy toy.

After a trip to a dollar store and scrounging around the house, I came up with the items I needed. One tool I used that isn't pictured above is my handy-dandy, wonderful hot glue gun. After the kids went to bed, I laid out all the supplies and enjoyed catching up on some of my favorite TV programs as I compiled the boards.

I simply divided a small, wooden cutting board into four parts. Then, after cutting and gluing my choice of tactile-fabulous objects, I added a ribbon border around each section. I also glued strips of magnets to the back of each board so I could put them on the refrigerator (while the magnets came with adhesive backing I chose to reinforce them with tacky glue to make sure they stayed firmly in place).

Ta-da! The boys (my best critics) love the results. They can't keep their hands off of them.

The first board features sand paper, felt covered with contact paper (for a slightly squishy soft/smooth surface - I originally wanted to do aluminum foil for a shiny, smooth surface but realized that Wesley had unrolled my foil earlier in the week and it was all wrinkled), sponges, and dried macaroni.

The second board has the shaggy part of a dusting glove, a green scrub sponge, shelf liner (the kind that is rubber-like... not sure what it is called), and a cluster of little glitter pom-poms.

Wordless Wednesday: goofy but determined Wes

Therapy Tuesday: Speech Therapy

Children with Fragile X Syndrome have significant language delays. Some never talk while others battle echolalia (repeating a phrase over and over) and cluttered speech (click on the terms for definitions).

Grant's speech therapist (ST) uses a flip book with a series of pictures that focus on the use of certain sounds. To begin with she uses just one picture per page. Then, to encourage control, she can have the same picture repeat itself up to three times per page. The purpose of this is for Grant to realize that each time he says a word it represents an individual picture/item. Because of his echolalia and cluttered speech, he tends to say a word several times. For example, if you were to ask him to say ball he would probably say "baw-baw-baw" instead of just "baw" (or, preferably, "ball"). We are still working on the individual picture.

A lot of Grant's language delays stem from oral motor processing issues (Apraxia of Speech). While he knows what he wants, his brain has a difficult time planning and telling his mouth how to form the sounds into words to express his desires. This causes great frustration for Grant.

[Side story: A week ago I had laryngitis for several days and had absolutely no voice - I could barely whisper. It was a lot of work for me to communicate a simple command or request. By the end of the day I was extremely tired and frustrated at the amount of effort it took to express my thoughts. I can completely understand why Grant gets frustrated and angry!]

To begin therapy the ST often does oral motor exercises, like having Grant stick out his tongue and lick a sour lollipop to "wake-up" his mouth muscles and nerves.

z-vibe from funandfunction.com

We also use a z-vibe during therapy and throughout the day. A z-vibe is a special tool that vibrates intensely. Before each meal, I try to remember to run the z-vibe around his face (in a specific pattern) and along the inside of his mouth and on his tongue.

A few months ago, with the help of the ST, I began a speech sound inventory for Grant. The purpose is to document and evaluate his progress in making various sounds.



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The sound inventory was updated this morning (the first time we did it was on January 25th). I hope to continue updating it every three to four months. Grant was a little cranky this morning but still showed notable improvements. He works so hard. I am so proud of him.

This is just a small but key sampling of Grant's speech therapy. I am very grateful for his therapist and the dedication she has to my son.

As usual, if anyone as any good ideas or tips regarding speech therapy, I'm all ears!

Beautiful Hands

During my research to see if Grant has Fragile X Syndrome I came across a website that talked about the lines on people's hands and how they can be a soft science clue to genetic disorders. Well, I was a little skeptical until I looked at Grant's hands... I about fell over.

The website stated that most people have three lines/creases on the palm of each hand - two across and one angled down (take a look at the inside of your hand and you'll see what I saying).

Some people, on just one hand, have only two lines - one across and one angled down. Then the website went on to say that some people with Fragile X have just two lines on both hands - one line across and one angled down. This, along with some other bits of information I read, said that this was a significant sign of the FX Syndrome (click here to see the website I am referring to*).

Grant has just one line across on both of his hands. Interestingly, one of the things Grant's neurologist did during her first observation of Grant was to look at his hands. She winced when she saw them. (Thankgoodness I already knew what she was looking for otherwise I may have burst into tears.)

Pictured above is one of Grant's hands. Both of them have the single crease across the palm like the one in the photo. At first it was painful to see the unusual creases as they were yet another symbol of something wrong with him, but now I see them as a part of my sweet boy and know they were designed by the Creator.

"For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well."
Psalm 139:13-14


*Note: I want to add that I do NOT support psychic or "spiritual" palm reading and that Grant's hands are only one of many symptoms he has of Fragile X Syndrome.

Fabulous Find: Mommy Speech Therapy

A fellow FX mom came across a website titled Mommy Speech Therapy and passed it on to me. It is fantastic! I have already shared it with Grant's speech therapist who was also impressed.

The website is educational and full of very helpful tips, games, and amazing worksheets. Below are examples of the speech worksheets for the initial D sound (the website also has medial and final letter sound worksheets).

Take a moment to check out www.mommyspeechtherapy.com.

Wordless Wednesday: Wesley's first haircut

 

Worship Wednesday: Rock of Ages

A couple years ago my mother gave me a precious gift - one of our family hymnals. It is priceless to me. I grew up singing from it. If a Minnesota snowstorm canceled church we would use the book during our family church service and I remember practicing my piano lessons from it. Now the hymnal is a key component to my "quiet time" with God. One of my favorite times to sing the sweet songs is when I am washing dishes or doing my other daily chores. I prop the book up, sift through the pages, and, without fail, land on a song that renews me.

One of my favorite hymns is "Rock of Ages". The heartfelt and soothing words are an anthem of my faith.

Rock of Ages

 by Reverend Augustus Montague Toplady written in 1763

Rock of Ages, cleft for me,

let me hide myself in thee;

let the water and the blood,

from thy wounded side which flowed,

be of sin the double cure;

save from wrath and make me pure.

Not the labors of my hands

can fulfill thy law's commands;

could my zeal no respite know,

could my tears forever flow,

all for sin could not atone;

thou must save, and thou alone.

Nothing in my hand I bring,

simply to the cross I cling;

naked, come to thee for dress;

helpless, look to thee for grace;

foul, I to the fountain fly;

wash me, Savior, or I die.

While I draw this fleeting breath,

when mine eyes shall close in death,

when I soar to worlds unknown,

see thee on thy judgment throne,

Rock of Ages, cleft for me,

let me hide myself in thee.

What is your favorite hymn?

Therapy Tuesday: questions to ask your health insurance provider

We are about to begin a new health benefits year and with Grant turning three soon we need to know what our options are for continuing his therapy (in North Carolina, early intervention services are discontinued when children turn three). After discussing the situation with Grant's service coordinator she provided some questions to ask our insurance provider. With her permission I am sharing them with you. If you can think of any additional questions to ask please pass them on to me! 

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Below is a list of questions to ask your health insurance company to gather information about what types of services are covered and what is needed to access your insurance coverage.

Cost

1. Is there a deductible I have to meet before you will cover the service?
2. Where am I right now in meeting my deductible?
3. How much will I have to pay once I have met the deductible?
4. Is there a copay I have to pay for services? How much is it?

Authorization

1. Do I need to get prior authorization for evaluations or for services?
2. Do I need a referral from my primary care doctor to get approval for a service

Coverage

1. What services does my plan cover? (Occupational Therapy?  Physical Therapy?  Speech Therapy? Counseling or Mental Health Services?)
2. Will you cover services that take place in the home?

Maximums

1. Is there a maximum limit for each claim?
2. Is there a maximum cap (lifetime) for this policy?

Health Reimbursement Account or Health Savings Account

1. Is there one of these accounts attached to my insurance coverage?
2. Am I able to choose what services this money is used for or is it on automatic draft to pay for anything insurance doesn’t cover?

Out-of-Network Benefits

1. Do I have benefits if I use a provider that is out of network?
2. Do I have a deductible that is different for out of network services?
3. How much will I have to pay once I have met the deductible?
4. Do I have a copay and how much is it?

Hoping for Hope: The Never-Empty Nest

I read the article The Never-Empty Nest today in Good Housekeeping about a family with two boys with Fragile X Syndrome (July 2011 issue, page 168 - or click here to read it online) and it brought on a flood of emotions. I paused halfway through to decide if I wanted to finish reading it. The feelings it stirred up were fresh, raw, and intense.

I am at the beginning of my journey dealing with Fragile X Syndrome. My son affected by the syndrome is only two years and 9 months old. Even though I have just begun to wage through the trenches of raising a special needs child, there are some days when I already feel old and tired and beaten down... and very, very alone. I am learning that there will always be more questions than answers BUT if I had to choose just one question to be answered it would be:

Will there be someone to love my Grant when I am gone?

Many nights I cry into my pillow begging God to answer the question. I know that I am not alone in the search for a hopeful future for my son. It is that search that motivates many parents like me to reach out to others for help.

I did finish reading the article. While it didn't answer the question (not that I thought it would), it was a great piece that said many things that needed to be said. I am thankful for the reminder that we, in whatever difficult circumstance we face, choose our attitude. Yes, there are days when I have to actively fight the urge to be bitter. But what does bitterness solve? I keep coming back to and resting on the truth that God has a purpose and a plan. I choose to trust Him.

Like the article, this blog post doesn't have any answers. Instead I leave you with a question:

Will you love someone's "Grant" in your life?

Worship Wednesday: This is the day the Lord has made!

The boys and I begin our mornings by singing the song below along with a quick prayer. It uplifts my attitude and puts my heart in a positive mood.

This is the day, this is the day,

that the Lord has made, that the Lord has made.

We will rejoice, we will rejoice,

and be glad in it, and be glad in it.

This is the day that the Lord has made,

we will rejoice and be glad in it.

This is the day, this is the day,

that the Lord has made!

"Give thanks to the LORD, for He is good; for His lovingkindness is everlasting... This is the day which the LORD has made; let us rejoice and be glad in it." Psalm 118:1 & 24

Five on Five: June 5, 2011

Last month my cousin's wife, Jenna Unruh (a great photographer and blogger), did an entry on the Unruh Photography blog called "May 10 on 10". It's where on the 10th of the month you take one picture every hour for ten hours. She did her version of that and I decided to do my own version. I don't have time to focus on taking ten pictures in a day and I also don't want to worry about the clock (even though I think that is a really good idea), so.... I'm doing five pictures on the 5th of the month... five on five. They are just snapshots of our life throughout the day. I believe that capturing the "monotonous" moments of one's day can sometime be the best memories to look back on.

Grant discovered our rocking chair and now pulls it out to rock in while watching TV. 

He is, of course, watching Tigers baseball.

It's the beginning of peach season! Aaron's mom generously supplies us with wonderful, tasty peaches from "the peach lady" in Waxhaw. They are so good. I plan on making raspberry peach jam sometime soon - on the advice of an old friend, Dierdre Harder Shetler, who shares my love for homemade goodness from the kitchen.

It is impossible to keep my children out of the pool.

Wesley is getting a little too used to hand-me-downs. He snatched Grant's half-eaten, discarded (on the table) apple and tried to finish it himself.

Aaron grabbed the camera for this one: Mommy reading bedtime stories to the boys.

Follow up: Grant's EEG

{This is a follow up to a previous post, Prayer Request: Grant's EEG.}

Well, I wish I could say the EEG went smoothly but it was a pretty rough ride. Confining a two and a half year old to a very small room with wires all over his head is never an easy deal but doing all that to a child with Fragile X Syndrome (intensely scared of new environments and new people) and Sensory Processing Disorder (does not like things on his head and needs certain kinds of input several times a day) is a recipe for STRESS. It was also stressful just knowing that our every move was being watched and recorded. I imagined myself being on a reality show. :)

I am also sad to report we did not capture a stare-off. I can't say that I am surprised. The stare-offs happen so quickly and sporadically and we were not in the normal environment in which they usually happen (they typically happen after Grant has been engaged in intense activity which was impossible to recreate in the hospital room).

There was another action Grant did that I have always questioned so I pushed the alarm button to mark the event on the recording. Pushing the alarm button is no small thing. A nurse flies into the room to try to observe the action in question and, as the nurse is rushing into the room, my job is to shout into the camera what I observe. I think I felt some of my hair fall out while all of that was happening (just kidding).

Fortunately, the neurologist reviewed brain activity at that time and didn't see anything abnormal (yeah!). So... we are still questioning the stare-offs and I have a feeling we will need to repeat the EEG experience in the future if we continue to see them. But for now the neurologist is going to review the brain activity over the 24 hours and give me a call to share her thoughts.

Grant is being prepped for the EEG electrodes. They first measure the head and mark the spots where they will be placed.

Then came a lot of glue and different smells and noises - and a lot of kicking and screaming from Grant. During this hour long process I had Grant's favorite DVD playing. It helped a little but Grant was very confused about what was going on and why Mommy was holding him down.

In true Grant fashion, he forgives and forgets quickly. After getting all the electrodes in place, they wrapped gauze around his head to keep him from pulling the wires out. It took Grant a couple of hours to get over the fact that something was on his head.

The gauze wrapped around Grant's head didn't last through the night but by the morning he was used to the wires.

 

This picture is to show the number of technicians, nurses, and doctors who worked with Grant. It was very involved. And, naturally, I educated everyone on Fragile X Syndrome during this whole process. Of course Grant's neurologist knew all about it but I made sure everyone else was up to speed on the latest info. :)

Thank you for your prayers. I know they are what got us through this time. Thank you also to my kind friend Lori Tolly who got up very early to be at our house at 6:00am on Wednesday to watch Wesley while Aaron had to go to work.

{Read the good news at Update: Grant's EEG Results}