Impromptu Photo Shoot

Every so often I realize that I haven't taken any pictures of the boys together, and I decide to have an impromptu photo shoot.  Last week we had one of those days.  I know all of you moms out there are laughing, as you know what I am going to say next.  How can it be SO HARD to get just ONE picture with BOTH boys looking at the camera AND smiling?!

There is no way I am sitting here for this!

Check out my new pointing skills!  Why does mom keep looking at me like that?

Maybe if I give her a look while I point that will help. Oh wait, Zach didn't smile anyway!

How about waving at the camera?  Is that better?

I could show you how I can purse my lips.  You love that I'm learning to keep my lips together!  Of course, it would help if Zach wouldn't ruin my pose...

There - that's better!  At least my serious face is the center of attention again.

This is so much fun!  See, I've even got my big brother pointing now!

See mom, you can't complain about this one, can you? At least MY smile is real!

I love that you're so proud of me for sitting still. Can we all take a minute to clap for me?

OK mom, we got a few good ones. Now I'm getting bored and it looks like my brother has forgotten his picture etiquette.  Can we be done here?

The Shiny Red Balloon

When we were looking at putting Zach into preschool, I spent a lot of time talking with the preschool registrar - asking her questions, explaining our family situation, and sharing what we were hoping school would provide for our family.  I never imagined though, that God would use these conversations to make a special place for Wesley in her heart.  When Zach started school, she would often wave me in to her office so that she could ask me how Wesley was doing with his therapies.  She very quickly recognized his affinity for fans and would hurry over to turn on the ceiling fan as soon as he started looking up at it and waving at it - no matter how cold it already was in the room.  Zach's school relocated at the end of February, and when Wesley and I saw her at the new location, the first thing she expressed was how disappointed Wesley must be that there were no ceiling fans at the new school for her to turn on for him.

This week she had four mylar balloons remaining at her desk from the grand opening open house.  On Wednesday, after we dropped Zach off and stopped by to say hi to her, she smiled at Wesley and asked me if he would like a balloon.  My first thought was, what about all these other kids and their parents?  How will they feel about the fact that my kid gets a balloon and none of theirs do?  But I graciously accepted her gift, as I saw the joy that it gave her to give my sweet boy a shiny red balloon of his own.  Sadly, somehow I lost it on the way home.  I have no idea how.  I never saw it float away, but suddenly I noticed that it was no longer in the car.

On Friday morning, I saw that the registrar still had three balloons, and as we stopped by to say hi, she again asked if Wesley would like a balloon.  Feeling bad that I had lost the other one, I said that yes, he would very much enjoy one.  As she cut the string and handed it over to me, Wesley's smile lit up the entire room.  He started laughing as he batted at the balloon over and over again.  Of course, again, as we walked out the school doors, I brushed against the doorway and the balloon broke off of the ribbon and flew away.

When I went to pick up Zach on Friday afternoon, she asked how Wesley had enjoyed his balloon.  As I explained to her my disastrous experience with these balloons, she quickly cut off the last two balloons and gave them to me, saying that she would like for each of my boys to have one.  As I CAREFULLY brought the balloons to the car and then CAREFULLY carried them into the house, I kept thinking in amazement that somehow my little boy came home with all four balloons this week.

I know it's such a small thing, and I'm sure she has no idea how she has blessed me, but to watch a woman dote on my sweet Wesley and love him just for who he is just means the world to me.  To have a woman who hardly knows us faithfully ask questions about how Wesley is doing and genuinely care about his progress has been such an encouragement. Every time I talk with this dear woman, I am reminded of God's love for Wesley and His faithfulness to provide blessing upon blessing for the sweet child that He has created.

I just wish that this dear woman could have been at our house on Friday night to watch Wesley as he played with his balloon.  I tied it to a leg of his little table, and he squealed in delight as he batted at it over and over again.  He ran all around the room shrieking with laughter as he watched it float around, calling him to chase after it and hit it again.  

Then Wesley did the most amazing thing.  He accidentally pulled at the balloon, which released the tie and caused it to rise up to the ceiling.  Instead of screaming until I came to see what was wrong, he ran over to me, stood right in front of me and signed "help", so that I would come and get his balloon for him.

This is the first time he has EVER asked for help without prompting.  The first time he has EVER made a request instead of screaming or throwing himself to the ground.  He was so proud of himself once he realized that when he signed "help", he could tell me to do something and I would do it.  In fact, I am highly suspicious of the activities that ensued.  That balloon floated to the ceiling over and over again the next few minutes, with Wesley watching it float up, looking over at me, smiling, and then running over to me to sign "help".  Of course, I was thrilled to play this game with him, as it re-enforced that he could initiate signs and I would respond to his requests.

Since that night, Wesley has often run up to Daddy or me, signing "help" until we figure out what he wants.  It has been so exciting to see his little mind make this connection, and we are praying that this will be the beginning of a whole new world opening up before our little boy. God is definitely at work in our precious little guy, and it is such a joy to watch his delight as he learns new things.

Thoughtless Words

So often we speak words thoughtlessly without considering how our words might hurt others. In honor of Spread The Word To End The Word Day, let's think before we speak.  Using the word "retard(ed)" is a derogatory way to use someone's disability as an insult, whether we are speaking directly to them or not.

When I hear this word, I hear "That was so Wesley!"  Or, "I can't believe I just did that, I'm such a Wesley!"  Out of respect for my boy, please find another word.

The tongue is a mighty weapon.  According to Proverbs 18:21, "Death and life are in the power of the tongue, and those who love it will eat its fruits."  Today, with God's help, let's choose to give life with our words.

More Spaghetti and Meatballs, Please!

I remember back when Wesley first received his SPIO vest, which provides compression through his trunk.  With the stabilization it provided, Wesley spoke his first word, learned his first sign, and started walking consistently within the first week of putting it on.

This week has provided similar excitement around our house.  Wesley's OT brought one-pound ankle weights to his therapy session last Wednesday.  She explained that wearing them for 20 minutes at a time every two hours would provide proprioceptive input that would assist in organizing his brain, helping him to be more aware of his body, stabilizing him, and calming him.  At first I was skeptical, as this seemed too good to be true. But truthfully, we have been AMAZED at how much these weights have helped our sweet little boy.

Within several hours of having the weights on for the first time, Wesley sat down and worked at a three piece puzzle until he put all three pieces in.  He has never even been interested in a puzzle before, much less able to correctly place puzzle pieces.  He also rapidly stacked a set of ten stacking cups his developmental therapist brought that he had never seen before, and he attentively worked at putting plastic coins into a small slot.

We have been working for months on helping Wesley to sign "please" whenever he needs help instead of screaming or throwing himself on the floor.  On Wednesday night, as Wesley was yelling again, I dutifully went through the process of saying "Does Wesley need help?  Say help, please!" while signing "please".  To my complete and utter shock, Wesley broke out in a huge smile and signed "please".  It was a beautiful moment, as Mike was home and able to see Wesley's sign too.  We cheered and cheered for Wesley as he beamed with delight.  Even more impressively, Wesley has continued to sign "please" when we prompt him, and this has been without the loss of other words or signs.

Wesley has also started imitating our hand motions.  He now shakes his fingers with us as we sing Five Little Monkeys Jumping on the Bed, lifts his arms up in the air as we sing The Itsy Bitsy Spider, and tries to copy us as we gesture while talking to him.  While we would love to see him try to imitate our voices and words, we know that beginning to imitate our hand motions is a huge first step.

On Wednesday night for dinner I served a family favorite - Creamy Herb Tomato Pasta with chicken.  I decided to offer our dinner to Wesley, and he willingly ate several bites before refusing more. While this was not a complete success, Wesley's refusal was not as adamant as usual, which gave us new hope.  So on Saturday night I prepared spaghetti and meatballs, praying that this would be the night that Wesley would join us in eating our dinner.  To be honest, while I was hopeful, my expectations were low.  I fully expected him to take a few bites and then refuse more, just as he had on Wednesday.  Instead, Wesley GOBBLED up his dinner!  I couldn't feed him his meatballs and pasta fast enough.  He didn't seem fazed in the least by the fact that these textures and tastes were quite a bit different from his usual Spaghetti-O's.  And once he had finished all of his very well-done pasta, he continued eating more of Daddy's, again seeming to not notice the difference in texture that would usually bother him so much.

This marked the first night in almost two years that I made one dinner and we ALL ate it!

So today I'm sitting here lifting my jaw back up off the floor and thanking God for the work that He's doing in Wesley's life.  It is amazing to me that God could use two one-pound weights to make such a difference in our little guy.

"Oh, magnify the Lord with me, let us exalt his name together!"  Psalm 34:3

Griefs and Sorrows

I'm normally not a big fan of posting links, as I assume that most people have very little extra time to go read recommended articles or blog posts.  This week, though, I came across two posts that articulated very well some of the thoughts and feelings I have had over the past two years.  If you have a few extra moments, take the time to read them.  They are a wonderful picture into the thoughts of people who are suffering and how to walk alongside them.

When I first read Tricia's post, I wept.  Her sorrows and griefs are much different than mine, but she has a gift with words and has expressed beautifully what it means to weep and have sorrow, but yet, by God's grace, not be overcome.

As she stated so beautifully, I too weep for Wesley, for what has been taken, for what he doesn't yet know that he doesn't have.  I too hate the unwelcome anxiety, the deep sadness and the swallowing grief.  I too have felt every shade of sadness, but have not felt angry.  I have wished, with all my heart, for Wesley to be made whole, but I have never questioned God's sovereignty - or His goodness.  I grieve the injustice of the loss of the life he could have lived, but I do not believe God to be unjust or unfair.  At first it seemed unfathomable for me to get through each day, week, and month, much less the rest of my life (and Wesley's life). But, as Tricia says, by God's grace I have and I will continue to do so.  This is His gift to me.  By God's grace I am not overcome!

As a perfect follow-up, Molly Piper (John Piper's daughter-in-law) wrote an excellent post on what it looks like to walk with someone through the trenches of grief and suffering.  She encourages us, when we want to say "I can't imagine", to instead just try.  Take the time to imagine what it would be like if your child had a disability (or any other tragedy or heartbreak) - what it would be like to care for them and provide for their additional needs; the sorrows of watching them not develop at a "normal" rate; the grief as they are rejected by their peers; the anxieties as you look into the future 20 or 30 years down the road.  No, you won't imagine perfectly.  We can never imagine the full extent of someone else's grief.  But taking the time to imagine helps us to enter into the suffering of others and weep with those who weep.

From my own experience, those who have truly taken the time to imagine our sorrows have also been those who have most compassionately and graciously and lovingly walked through the past two years with our family.

New Blog Design

I will be the first to admit that my computer skills are way behind the twenty-first century.  How I took computer programming classes in college and yet manage to get lost reading the html code on Blogger is beyond me.  Thankfully, my friend Sandra at The Sensible Mom.com came to my aid.  When she offered to redesign my blog for me, I jumped at the chance.  It has been a joy to work with her, and I am so thankful for her kindness in sharing her gifts and talents with me!  To top it all off, I am delighted with the final design!

Sandra is starting her own business designing blogs, and on March 14th she will be hosting a Blogger blog design giveaway on her website to announce the grand opening of her company.  For anyone considering a redesign of their blog, I would definitely recommend considering Sandra.  And for those of you with WordPress blogs, she is planning to start accepting orders for those in April.

Brushing and Spinning

Brushing and Spinning - also known as the tools God is using to teach Mommy that her time is not her own but the Lord's to use as He sees fit.

Early on we noticed that Wesley had an obsession with licking things.  At first we wrote it off as the usual way that babies interact with and explore their surroundings.  As time went by though, instead of seeing a decrease in licking as one would expect, Wesley's need to interact with the world with his tongue only seemed to grow.  We did our best to limit his licking of the floor, the carpet, the pedals on the piano, and other large inanimate objects, seeking instead to direct his licking to small toys he could hold in his hands.

Another thing we noticed very quickly with Wesley was his constant need for motion.  At 2 months old, he started rolling over.  From that point on, he has never stopped moving.  His determination to always be on the move has benefited him greatly in his development of gross motor skills.  He started army crawling at 7 months, crawling at 11 months, and walking at 15 months.  On the other hand, it has been detrimental to his ability to concentrate and focus on any task for more than a few seconds at a time.  As well, he still struggles significantly with balance because of his unwillingness to work on anything related to stability.  To this day, if we want to spend more than a few minutes at a time working on a task with Wesley, we need to put him in his highchair where he can't take a break and run around the room every minute or so.

Wesley - 11 months old

Spinning objects have always held a fascination for Wesley.  He selects toys to play with largely based on whether or not they have spinning parts on them.  Then he focuses intently on his toys while spinning them with his hands.  Once he is satisfied with the spin of the object, he then sticks out his tongue to experience the tactile sensation.  Since we have removed all of Wesley's toys that spin in an attempt to curb this behavior, his favorite thing to do is grab one of Zach's cars or trucks and either spin the wheels while licking them or turn the entire car upside down and spin it around on Zach's train table while watching it closely.  Wesley also loves to spin himself in circles.  He giggles and laughs as he goes around and around until he's so dizzy that he walks into furniture and walls like a drunken sailor.

In the last few months we have also begun to notice his desire for firm pressure.  He regularly comes to us for big hugs and squeezes.  He likes pressing into tight spaces and sucking his thumb while holding a blankie.  And when he's upset, he throws himself prostrate on the floor or throws his head into the wall or the floor.

We have been concerned about Wesley's sensory issues for a while now, so we are thrilled beyond belief that God has provided us with a new occupational therapist who is particularly experienced with helping children with sensory integration disorders.  Marsha has helped us to understand what is going on with Wesley's vestibular system (which contributes to balance and a sense of spatial orientation), his proprioception (the sense that indicates whether his body is moving with the required effort and indicates where the various parts of his body are located in relation to one another), and his sense of touch/sensory system (how he uses the sense of touch to explore the world).

With Marsha's help, we have created a sensory diet for Wesley, providing him with a schedule of daily activities that will hopefully give him the sensory input his body needs to get into an organized state and stay there.

To provide tactile input for Wesley, we have begun a deep pressure regimen which involves brushing him with a special brush every hour and a half throughout the day.  Our hopes are that this will assist in increasing his sense of touch throughout the rest of body so that he doesn't feel the need to seek sensory stimulation with his tongue.  So far we have seen some improvement in this area, which is helpful in providing us with a reason to keep working with him faithfully.  The brushing is followed immediately by compression of Wesley's joints, which provides proprioceptive input as Wesley's brain seeks to stabilize and protect the joints we are compressing.

Twice a day we are also using a vestibular protocal called "the Astronaut Program", which involves us spinning  Wesley around in a circle ten times in one direction and then ten times in the other.  The goal of this therapy is to help improve his visual processing, motor coordination skills and sense of balance.

In addition, we are providing Wesley with "heavy work" activities, such as pulling cushions and heavy pillows off the couch, climbing over couch cushions on the floor, pushing heavy balls and lifting heavy toys up to put them in buckets.  The resistive proprioceptive input obtained through "heavy work" activities helps to improve attention and body awareness, so we are hoping it will help to calm Wesley and organize his nervous system.

It seems that we must not have been busy enough before, since Marsha has assisted us in filling up our days that we might live each day to the fullest, not squandering even a moment of the precious time God has given us.

I just keep telling myself that if these are the tools that God is going to use to help Wesley with his sensory issues, I ought to rejoice in the opportunity to help my son rather than grumble as I brush and compress the joints of a screaming child who would prefer to do anything in the world other than LIE STILL  for a few minutes.

"For the love of Christ controls us, because we have concluded this: that one has died for all, therefore all have died; and he died for all, that those who live might no longer live for themselves but for him who for their sake died and was raised." 2 Corinthians 5:14-15