Photos of the Month: April 2011

OK. I have to admit it. I must be more realistic. I attempted the idea of posting pictures showcasing our life every week but sometimes, like the past few weeks, life needs more of my attention and blogging must be set aside for a while. So... to be more realistic, I will showcase a few snapshots of our life once a month. :)

It's baseball season! I am still amused at how much Grant loves baseball. And, as usual, he's got to watch TV up close to get in with the action - jumping most of the time, of course.

This is how Wesley prefers to watch TV.

The Zoo!

We, along with Aaron's parents and his sister Lydia, went to the zoo over Easter weekend. It was wonderful. Aaron and I were very grateful for all the helping hands - the ratio of five adults to two kids was just the right amount. Whew!

 Peek-a-boo, Wesley!

We rode the little train at the zoo. Needless to say, Wes wasn't exactly a fan of it to begin with...he warmed up to it quickly though.

 Grant could have ridden the train all day - he loved it!

 OK... Grant could have ridden the train and the carousel all day.

All tuckered out.

Quote Board

Me: "What does a kitty-cat say?"

Grant (in a soft, high-pitch voice): "mew-mew-mew"

Wes (at the top of his lungs with his head tilted back and mouth WIDE open): "MEEE-AAAAAW"


:) Love it!

Therapy Tuesday: Sensory Box

Grant's extreme need for sensory integration, because of his Sensory Processing Disorder, forces me to think "outside the box" a lot. Unfortunately, creative thinking is not my strongest skill. Fortunately, many others have been in my shoes and have provided some helpful ideas. One of them is the sensory box. This particular sensory box engages Grant's sense of touch and also works on fine motor planning and on the range of motion for his wrists (ie: rotating his wrists as he scoops and pours).

The box is filled with rice, popcorn kernels, and a few scooping toys. I also bury various things for him to dig and find.

While Grant enjoys scooping and raking his fingers through the rice mixture, his favorite thing to do is to bury his hands and then fling the contents of the box. At least rice is easier to get out of his hair than dirt and sand. :)

Click here for more sensory box ideas.

Photos of the Week: 4/17/2011

I was chasing after Wesley when I turned around and caught Grant climbing to the top of the playset by himself. I ran to stand behind him as he climbed the rest of the way but he did it completely on his own! Way to go Grant!

Daddy teaching Wesley how to gently pet the cat.

 

 Sadie-cat

The Great Escape

Aaron and I were able to get away Friday night (thanks to Aaron's parents) and stay at a cute little Bed and Breakfast. It was a new and fun experience. What a wonderful gift to "escape" and spend some time alone - and the boys had so much fun with Grandma and Grandpa Mayes!

  

 The quaint suite had it own dining area, sitting room and bathroom. 

Worship Wednesday: Stability

Isaiah 33:6

I thank you, Lord, that I do not have to search far for the things my heart longs for:

Stability, salvation, wisdom & knowledge.

To fear [respect, have reverence for, worship] the LORD

is a treasure I never want to lose sight of....

"a picture is worth a thousand words"

In our case a picture is usually worth one very valuable word. My oldest son - a sweet, rambunctious 2 1/2-year-old who has Fragile X Syndrome - is currently classified as non-verbal. I say currently because I still have hope that he will speak someday. My hope isn't without validation as it isn't unusual for children with Fragile X to begin talking later than other "typical" children. My son's receptive language is great but he gets extremely frustrated when trying to communicate his needs and desires. I try to prompt him to use his words (he can say a couple words and can sign a few) but when that doesn't work he uses visual aids.

Top row: juice, eat, milk,

Second row: book, swing (indoor), iPad,

Third row: chew, shoes (representing to go outside), TV

This is a lot like PECS (Picture Exchange Communication System) but we modified it by using our own pictures. Grant simply peels off a picture (we "velcroed" the pictures to a plastic folder that we can store in a three-ring binder) and hands it to me while I use the picture/word in a sentence. For example, when he chooses the first picture and hands it to me, I say: "I want juice" or "I want a drink of juice."  

Signs: (1) Stop, (2) No Spitting, (3) No Screaming

Because I believe Grant has auditory processing disorder, I also hold up pictures that represent phrases or rules I often say. That way he has a visual reminder/prompt of what I am saying and it is not always mommy "yelling" at Grant. I need to make "no throwing", "no hitting", and "get a chew" prompt pictures as well. :) I am also working on pictures to put in sequences so Grant has a visual "list" of certain routines (ie: the bedtime routine).

Last, but definitely not least, is the iPad. I, along with the therapists, love this wonderful aid. Not only do we use it for various therapies, we frequently rely on the Answers:YesNo application (affectionately known as the "Yes/No app"). Echolalia is one of the symptoms of Fragile X and Grant does it all the time (he just repeats the last thing we say rather than saying what he truly needs or wants). Interestingly, Grant is very decisive when using the Yes/No app - he just has a hard time verbalizing it. We are saving our pennies to purchase Proloquo2Go but we have plenty of other applications that are useful in the meantime.

I have always known Grant is very visual (just like me) and these tools have been effective in unlocking the world of communication for my sweet son.

Fragile X and Sleep

I was the person who needed at least eight hours of sleep every night... until I had Grant. Every new mom knows that sleeping comes secondary to everything else. I was thrilled when he finally started sleeping through the night at almost five months of age. That meant I could get at least six to seven hours of sleep. Then I became the person who needed at least seven hours of sleep every night. Well, that has changed again. About six month ago, Grant began to have difficulties sleeping through the night. I have read that children with Fragile X Syndrome/Autism can have that issue. 

Disturbances in sleep patterns are often noticed during infancy for persons with fragile X. Boys with Fragile X may take much longer than other infants to sleep through the night. Getting to sleep may be difficult, as hyperarousal makes it hard to calm down. Bedding and pajamas may be scratchy, and their input disturbing. Even older children and adults may awaken in the night and wander about the house. Once they do sleep through the night, many people with fragile X continue to have "internal alarm clocks" that wake them up very early.

Both environmental adjustments and bedtime routines may be necessary to help optimize sleep. Room darkening shades, tapes of soothing sounds, and soft, loose pajamas and sheets may all help with the establishment of a calm atmosphere. Some families find it necessary to install gates or half-doors to prevent their children from wandering around the house at night. The establishment of a bedtime routine, with a regular bedtime and various rituals (stories, songs, etc.) can provide a signal that it is time to sleep. See "Sleep Disorders in Fragile X Syndrome".  (http://www.fragilex.org/html/living.htm)

We keep Grant's bedtime routine the same every night: swinging (in the indoor therapy "cuddle" swing), brushing and pressure therapy, pajamas, read books, prayer, and then bedtime at 8pm. At that time, he plays "quietly" in his room for about an hour until dropping to sleep on his floor. We then put him back into bed and pray he sleeps through the night. Sometime he does - it goes in cycles. Grant will sleep well for about two weeks and then have a handful of nights that are awful. During the sleepless streak he will wake up around 2am and cry, whine, and yell for about two to three hours and then fall back to sleep. It is very stressful to me. We have tried everything: rocking, swinging, brushing, pressure therapy, a weighted blanket, and tough love. For past couple months we have been giving him a "sleeplessness" vitamin but that doesn't seem to be helping (or maybe it is and it just would be a lot worse if he didn't take it... who knows...). The vitamin supplement we give him does not contain melatonin so maybe we should try that... we'll see. Anyway. All this to say, I have now become the person who needs at least five hours of sleep. :)

Any suggestions?

Wait... I think Grant finally fell back to sleep. Yeah! I'm going back to bed. Good-night!

Update 4/10/2011

My parents visited us for a week and it was great! It was a busy week but it felt good to get daily hugs from my mom, rant about the political climate with my dad, and cross many items off of my to-do list.

First, Grant's ear tubes and tongue surgery/procedure went well. Grant was a champ and charmed all the nurses and doctors as I educated them on Fragile X Syndrome. While I know it is a rare disorder, it still is very disconcerting to me that most medical professionals know little to nothing about it. However, they ask great questions and allow time for me to present my mini-lecture on the syndrome. Trust me - you ask and I will tell. :)

Second, Wesley's blood work for the Fragile X test went smoothly. Thinking about the possible results sends me into a tailspin so I am forcing myself to not think about it until we get them. Hopefully we will hear something in about 2 more weeks. In the meantime, Wesley is progressing wonderfully! He is walking around with confidence, climbing stairs in records speeds, babbling up a storm, pointing to random household items and pictures in books (which, of course, I love to take the time to tell him about each item), waving bye-bye, repeating various sounds, stacking rings, pushing his favorite trucks around the house, throwing balls, and instigating some trouble with big brother.

Unfortunately, Wesley's 12-month wellness check-up had some frustrating news. His diet has been of great concern to me the past couple months. Basically, Wesley doesn't eat. He would prefer to drink his diet in milk but even that isn't overly impressive. It's not that he cannot eat - he has proven that he has the ability to eat all foods - he just eats a couple bites and then is done. Playing is a much higher priority to him. I brought my concerns up with the doctor and he agreed. Wesley's weight has dropped from the 50th percentile down to the 10th percentile. So that means I will be monitoring him even more closely (if that's possible) and pulling out even more of my hair trying to get him to eat eggs, yogurt, PediaSure smoothies, peanut butter, avocados, and whatever else I can beef him up with on the daily basis. Also, the doctor listened to Wesley's heart and felt that it would be a good idea to refer him to a cardiologist. I am praying that it is just a "cover the bases" referral. Wesley does have a heart murmur (as do I) and it does sound "innocent" (just like mine) but people with Fragile X can possibly have some minor heart issues... so to the cardiologist we go!

Lastly, my dad and sweet hubby worked hard all week to construct our new, fabulous playset! Thanks to wonderful family, we are blessed to have a play structure for the boys (thank you, thank you, thank you). Grant tries to escape the house every moment he can to play on it. He constantly runs back and forth between the swing and the slide signing "more, more!" Needless to say, we will be spending as much time as we can outside and will enjoy this wonderful blessing for years to come.

The other day a friend of Grant's came over to play for a little while.

It was fun to hear their laughter and see them run around together.