My Boys: lounging around

You gotta love these guys!



 Wesley taking it easy while watching an episode of Baby Einstein

Grant backed into a basket and laughed for two minutes straight while trying to get out of it. 

The Diagnosis

As I parked my car in front of Carolina Neurological Clinic, a wave of nausea washed over me. I'm not sure why. I already knew the truth. A day earlier I had gotten the call from the neurologist's office saying that Grant's Fragile X genetic test had come back with abnormalities and the doctor wanted to meet with us ASAP. Translation: Grant has Fragile X Syndrome. (Click here to read a previous post for more details. You can also visit the National Fragile X Foundation website to find out more about the syndrome.)

When Aaron and I met with Grant's neurologist, she sat down, opened up Grant's file, looked up and announced that Grant has Fragile X Syndrome. We merely nodded knowingly and waited for her to say more. But she didn't. There was nothing more to say. Her job was done (aside from the 2 hour sleep deprived EEG that will be conducted tomorrow morning). Instead, she stated she was going to contact our geneticist to move our appointment up from August 11th to an earlier date. There is a very long wait list to meet with a geneticist (about 9 months), but if you have a diagnosis - especially one of Grant's magnitude - they try to fit you in earlier. It is the geneticist who will answer all of our questions and guide us through our new reality.

Our new reality. It's a scary one full of even more questions, testing, and waiting. How far will Grant develop? How high is his IQ? (Just like many disorders, Fragile X Syndrome has a spectrum. Unfortunately, statistically speaking, the highest IQ for a high-functioning FX boy is about 80. Not good. It is borderline mentally impaired/low normal. This reality crushes me the most. I can scarcely think about it before breaking down into tears.) Will Grant ever live on his own or have a job? How will we pay for all the therapy and testing he needs? Who will take care of him when we are gone? Oh the uncertainty and pain!

While I don't have answers to any of the questions, I do know that Grant's Maker knows it all and has promised to be with us each step of the way. We will just take it one day at a time and continue to ask God for grace, peace, wisdom, and a miracle.

Please pray specifically for:

• peace as Aaron and I come to terms with our new reality.
• God to be glorified and to find comfort in His sovereignty.
• wisdom: I feel like I'm stumbling along trying to figure out what to do next. (ie: How do I go about filing for financial assistance? What paperwork should I complete? How do I ramp up Grant's services? How do I know what will now be covered by our health insurance?) I am praying that God will put someone in my path that can help me figure all of this out.
• Wesley: most likely the geneticist will want our second son to be tested for Fragile X. While Wesley is currently hitting all of his milestones, we are holding our breath and praying that he does not have the syndrome.

Hear my cry, O God; give heed to my prayer. From the end of the earth I call to You when my heart is faint; lead me to the rock that is higher than I. For You have been a refuge for me, a tower of strength against the enemy. Let me dwell in Your tent forever; let me take refuge in the shelter of Your wings. Psalm 61:1-4

Worship Wednesday: Rest

Today is one of those days when I wish I could just stay in bed and hide underneath the blankets and let life pass me by for a while... Instead, I will seek refuge and REST in my Savior's arms. 

Truly my soul finds rest in God; my salvation comes from Him. Truly He is my rock and my salvation; He is my fortress, I will never be shaken. Psalm 62:1-2

Come to Me, all you who are weary and burdened, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and you will find rest for your souls. For My yoke is easy and My burden is light. Matthew 11:28-30

I praise you, Lord, for your unconditional love and mighty hand. Your ways are truly a mystery to me. However, you have made your love for me abundantly clear.

Therapeutic Listening Therapy

When I was first told about this therapy I wasn't sure what to think. Listening to special music through special headphones was supposed to help regulate my son's body. I was told how it could help with alertness, focus, receptive and expressive language (including articulation), balance, motor planning, emotional responsivity, posture, spatial awareness, initiation of play behavior and verbal interaction and that it could even help with sleeping, eating, and toileting issues. Yes, I was told there is a CD for potty training (believe me - we will be looking into that one for sure). After reading a convincing research study from a medical journal and discussing the therapy in depth with Grant's occupational therapist, we decided to shell out the bucks and give it a try.

There are different CDs for different things but they all work on the vestibular system. The music, in a word, is weird. The songs are normal enough (The wheels on the Bus, Old McDonald had a Farm, etc), but the pitch bounces around from high to low and the volume will be normal one second and then much louder or softer the next. While the music makes me bugged-eyed after a few minutes, Grant loves it. Each CD is listened to for 30 minutes twice a day with at least three hours between each session. So, basically, we do one 30 minute session in the morning and another one later in the afternoon. It is best to engage the child in some sort of activity. Therefore, we take that time to enjoy our "table time" filled with coloring, puzzles, sensory activities, and fine motor exercises. One of the keys to success with this therapy, I was told, is to maintain Grant's sensory diet - which includes all of his other therapies: brushing, swinging, etc... Let me add, this therapy is not for everyone. The child must have a neurological need for it (sorry, I guess this means you can't borrow our potty training CD).

For more information (it's pretty interesting), click here.

We have been doing the Therapeutic Listening Therapy consistently for about six weeks now. Grant's speech and articulation is slowly improving and he is walking better (he can almost run now and doesn't fall nearly as much). Unfortunately, it is difficult to know for sure what, of all of Grant's therapies, is making the difference. It's probably a little of everything. Who knows. We'll just keep plugging along. We are thankful for any improvement.

One of Grant's favorite things to do while listening to his therapeutic music is to squish through a pan of whip cream to find (and eat) all the buried raisins, berries, and sour candies. Sensory fun for the fingers and the mouth!

Seek

I love to be sought after. One of my favorite things about romance is the search. Even better, I love it when God seeks my heart, my will, my all. He wants all of me. And, just like us, He wants to be sought after. What do you seek?


You will seek Me and find Me when you seek Me with all of your heart. Jeremiah 29:13


Sow righteousness for yourselves, reap the fruit of unfailing love, and break up your unplowed ground; for it is time to seek the LORD, until He comes and showers His righteousness on you.  Hosea 10:12


Seek first His kingdom and His righteousness and all these things will be added to you. Matthew 6:33


For everyone who asks, receives; and he who seeks, finds; and to him who knocks, it will be opened. Luke 11:10


Therefore if you have been raised up with Christ, keep seeking the things above, where Christ is, seated at the right hand of God.
Colossians 3:1

Therapy Tuesday: Now I weigh me down

Grant received his weighted vest a little over a week ago. The weight of the vest is 8% of his body weight. The purpose of the vest is to provide a form of input Grant's body craves. The website, Sensory Processing Disorder, explains it well:
  
Weighted vests are frequently an essential ingredient in a sensory diet. The reason these vests work so well is because they provide constant, even, deep pressure input to [the] child when his body is craving this important calming and organizing proprioceptive input... Many children with sensory processing disorders, autism, or ADHD show dramatic improvement in their ability to sit still and concentrate on tasks. These vests can be used before or during gross motor, heavy work, table top, classroom, or at-home activities, when their bodies need that extra input in order to perform tasks with sustained concentration.

The first phase of the therapy is to wear the vest for 20 minutes of every hour (20 minutes on then 40 minutes off) all throughout the day, except when he is sleeping of course. We live by the clock at our house. At this point we have not seen any major or "dramatic" improvements with Grant's focus or performance, but it is early. It definitely calms him down though. Typically, this phase lasts approximately two weeks to two months (depending on the need). Grant's therapists think a pressure suit (to be explained in another blog post) may be the best way to go for him. The weighted vest, as typically used after phase one, will  then be used for individual situations such as right before going to a restaurant or church or if he is showing symptoms of getting "out of sorts".

Grant's vest was purchased from a consignment store and then "outfitted" with pockets of weights by a local church ministry called Wrapped in Love.

 Grant's weighted Elmo blanket (also made by Wrapped in Love Ministry)

Often children with sensory processing disorder have a difficult time sleeping through the night. A weighted blanket can help calm their bodies and sooth them to sleep. Thankfully, Grant does not usually have much difficulty sleeping through the night. We often wrap the blanket around him while reading bedtime stories to calm his legs and help orient himself before going to sleep.

Here is the other side of the weighted blanket. You can see the pockets of weights sewn into center of the blanket.

Note added July 17, 2011: Since this post Grant has developed another symptom of Fragile X Syndrome - difficulty sleeping through the night. The weighted items continue to be a big piece of Grant's sensory diet and is use through the night now. You can read more about Fragile X and Sleep by clicking here. 

11 Months Old

Wesley is rarely without a goofy smile on his face. He mastered the sippy cup this past month and is standing on his own for longer periods of time each day. While he is beginning to jabber a bit more and is isolating his left pointer finger a lot, his language development is still a major prayer request. Wes is a happy boy and often seems to have a mischievous gleam in his eyes. His personality is definitely starting to come out. He has his favorite books, blanket, foods, and toys.

 Wesley loves to trek around the house with his little walker. He hasn't taken any steps on his own but he doesn't seem to be far off from doing so.

Wesley never resists a pancake - especially when Mommy throws some chocolate chips or blueberries into the batter.

Be still and know

I'd like to think (or at least convince people) that I am a patient person, but the truth is I hate waiting. I'm a charge ahead and get it done kind of person. From the moment I knew something was wrong with my oldest son, I began the crusade to find out what the problem was so it could be fixed. I have spent countless hours researching; filling notebook pages with questions, information, and various theories. I have read numerous books, articles, and blogs. I have pounded the floor begging God for wisdom, mercy, and healing. But I now find myself in limbo - waiting for the DNA test results to see if Grant has Fragile X Syndrome. The waiting is killing me. At this point, there is nothing more to be read or researched. I feel helpless and emotionally flat. Interestingly, I am convinced that this is exactly where God wants me to be. 

Just BE STILL my child... and KNOW that I AM GOD. 

God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging... 'Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.' Psalm 46:1-3, 10  

OK, God. I'm still. Once again I am learning that this situation/trial/journey is not all about me and it is certainly not about me trying to fix something. It's about God and His sovereignty. It's about letting go, stepping out of the way, and letting God work in my life and in my sweet son's life. God must be glorified through this trial or all of this will be in vain. So, therefore, I will strap on my shoes and hit the road to continue running the good race. (2 Timothy 4:7-8) 

To God be the glory!

After waking up from his nap, you can usually find Grant looking out his window, affectionately clutching his special blanket. The very image of peaceful - for a few mintues at least. :)

My World, His World

My son, Grant, lives in another world. While we live under the same roof, his atmosphere is very different.

My world: As I make my way to the kitchen, I bend over and scoop up some toys. I throw the toys into a basket as I turn and glance at a recipe and roll up my sleeves. The pots and pans crash and clink as I pull out what I need. I toss herbs and spices together while grabbing other ingredients and step over a stray toy. A dog barks in the distance and the sound of little feet getting up from a nap filters through the ceiling. I smile and hum to myself as I quickly run through my mental to-do list. A normal portion of a normal day - no big deal.

Grant's world: As I walk through the house, I try my best to keep my balance. It is hard for me to tell where my body is in relationship to the world. Walking up and down the stairs and over different surfaces can be a big challenge. (My mom told me that I used to shake and cry when trying to walk over a big crack in the sidewalk. Well, you would shake and cry too if you had to walk over a deep cavern. Turns out it wasn't a deep cavern. Sometimes it's hard to tell.) I hear my mom telling me to do something but I smell food, the living room ceiling fan is on, and there is a dog barking. We don't have a dog but I've seen one at our neighbor's house. I like him. My mom kneels down and looks into my face and slowly tells me to walk over, pick up my cup and put it on the table. I am getting better at doing this but sometimes I still have a hard time putting the cup on the table. At times I slam it down too hard or sometimes I can't seem to set it up straight. It takes a couple of tries but I get it right. I clap. My mom claps too. I want to play ball with my mom. I know what I want but my mouth refuses to say the words no matter how hard I try. I am learning to say sounds and am also learning sign language. It is so hard. My mouth and my fingers don't often do what they are supposed to do. I am happy though. I love to smile, jump, and kiss.

This blog post kicks off a series about Grant's different therapies, self-management techniques, and therapy tools. Follow along as we peek into the world of a child with Sensory Processing Disorder, Apraxia of Speech, and, possibly, many other challenges.

• Weighted Vest & Blanket (hourly: currently 20 mins on, 40 mins off)
• Therapeutic Listening Therapy (twice a day for 30 mins)
• Swinging & Jumping (twice a day)
• Astronaut Therapy (twice a day)
• Lotion & Brushing (three times a day)
• Speech Therapy & Oral Input (speech therapy twice a week, z-vibe/oral input three times a day)
• Social Therapy (once a week - sometime twice a week)
• Occupational Therapy (twice a week)
• Physical Therapy (once every other week, certain activities done throughout each day)

Update: Genetic Testing for Grant

Praise: Grant's chromosomal microarray test came back ALL NORMAL!!

Prayer: We are still waiting on the Fragile X test results (will be several weeks).

Prayer: The BUN test will be redone. Results came back high. It could be a sign of dehydration or a diet too high in protein (sounds like Grant's diet) or a sign of kidney issues. Once I realized all this I called and spoke with a nurse at the neurologist's office. The nurse said that while his number was high, it wasn't alarmingly high. A normal range, if I recall correctly, is between 12 and 20 - Grant's was 23.