Wednesday, November 23, 2011

Speech Unprompted

Wesley's greatest struggle has always been with speech.  In the past few months we have watched him become more and more frustrated at his lack of ability to communicate with us.  His feeding therapist, speech therapist, and developmental therapist have all jumped in to help, working extra hard to help him to initiate communication with us, whether that be grabbing a picture card to show us what he wants, signing, or making his requests verbally.

The biggest thing we are working on is helping him to realize that he can choose to initiate communication rather than express his frustration by angrily throwing his glasses and screaming until we give him verbal cues to tell us what he wants.  At the prompting of Wesley's therapists, we have created more picture cards of all of his preferred items.  Now, whenever he shows signs of being frustrated and unable to tell us what he wants, rather than verbally cueing him to tell us what he wants, we have started bringing him over to the picture board and showing it to him.  Once he has made a selection from the board, we praise him for telling us what he wants and then encourage him to verbally tell us what it is that he wants as well.  We have been told that visual prompts are easier to remove long term than verbal prompts, so we are hoping that with time he will make his way over to the picture board himself to bring us a picture of what he wants rather than requiring us to lead him to it to make a selection.  With time, we are praying that this will also lead to him realizing he can just use the words themselves to tell us what he wants rather than going to get a picture.

We have already seen a bit of improvement this week.  Once or twice a day he will go to the board on his own initiative and bring us a picture of what he wants.  As well, he has started coming up to us, taking our hand, and saying "up", which is his word for "help".  He then drags us to what it is that he wants.  Of course, his patience is very limited, so this big pregnant mama is struggling to jump up and follow him fast enough, especially when I only have one hand with which to get up while he is pulling at my other one!

As well, Wesley's feeding therapist has spent a lot of time working with him to say "I want..." before saying the item that he wants.  He still needs verbal prompting for this, but with the prompting, he points to his eye and says "I".  Then he puts his hand over his mouth and says "wa".  After this, he tells us what he wants and then gives us a huge smile.  We are hoping that with time we will be able to give him just the visual cues of pointing to our eye and then putting our hand over our mouth to encourage him to say "I want...".

While I have been encouraged by the strides Wesley has taken the past two weeks, it is still disheartening to see him get so angry when he is struggling to tell us what he wants.  And now that he is older and more aware of how hard it is to communicate, often he just resorts to getting angry first rather than trying.

This morning I brought Wesley back in to meet with a therapist in the Assistive Technology department at our therapy clinic, praying that God would give her wisdom and insight into how we might be able to help him.  I expected a few ideas here or there that might or might not work about how to better use the pictures to communicate.  Instead, she brought out a communication device which spoke the words as Wesley pushed the picture buttons.  I was completely and utterly amazed as I watched Wesley work with her.  He LOVED pushing the buttons and quickly figured out how to communicate what he wanted with the therapist. She even put "I" and "want" buttons onto the device using Boardmaker pictures, and for the first time he seemed to understand the abstract pictures rather than needing digital pictures.  She explained that the missing piece for him was hearing the word spoken when he made his selections.

After working with her for five minutes or so, Wesley was able to push three buttons in a row to say "I want fish".  The best part about it was that after he pushed each button, he would attempt to say the word before moving on to push the next button.  So he was able to both initiate conversation about what he wanted and also verbally express what he wanted without any verbal cues from us.  It was so much fun to him that he willingly gave up his favorite fish multiple times so that he could push the buttons again to request that we give it back to him.  The therapist will be writing up a request to Early Intervention that this communication device is a necessary component to Wesley's communication and should be provided to him.  Please join us in praying that the paperwork will go through and be approved by the state before he ages out of the program in four months.  Otherwise we will have to start all over again and request that the school provide him with this device.

The therapist today also showed me several pieces of software that we can use with the touchscreen on our computer to help teach concepts to Wesley.  She demonstrated how to create an activity using one of the programs to show Wesley two items at a time and have him choose the correct one.  I was amazed at how many abstract objects he knew, as he correctly chose the item requested every time.  The therapist will also be requesting that the state provide us with this software, but even if they don't, it is well worth the $150 for us to invest in purchasing it.  Wesley loves doing activities on the computer with the touchscreen, and this would provide us with a way to teach him colors, shapes, letters, numbers, animals, and all kinds of other things on the computer in a manner that he would really enjoy.

I know it will be several months before we receive any technology from today's meeting, but I left encouraged and filled with hope for the future.  I am so thankful for the amazing blessing of assistive technology and that God has continued to provide Wesley with so many tools that have helped him immensely over the past two and a half years.  I can't thank God enough for blessing us with wonderful therapists and a very helpful coordinator with Early Intervention who have sought to provide Wesley with the best services and tools possible for him to succeed to the best of his abilities.

Monday, November 21, 2011

Fall Festivities

This fall has been particularly enjoyable, since for the first time, both Zach AND Wesley have participated in the fall festivities.  We have enjoyed including Wesley in our family activities and watching his excitement as he experiences them for the first time.

When Mike and Zach carved pumpkins, Wesley was right there with the spoon ready to help scoop out the insides.  He was fascinated by the process and thoroughly enjoyed taking the tops on and off of the pumpkins.  Of course the highlight for him was when we put candles inside and lit them.  The glow of the candlelight was just mesmerizing to him!

We enjoyed trick-or-treating as a family this year too.  I brought the boys over to the outlet mall near our house before Mike came home, and they loved going into each store and getting candy.  After a while Wesley became a bit frustrated at the prospect of receiving candy only to watch it be placed into his bag for a later time.  So, he enjoyed a lollipop while Zach skipped along in front of the stroller excitedly looking for the stores participating in the event.  Once Mike came home, we enjoyed trick-or-treating as a family on our street, and Wesley was thrilled to walk up to each door and reach into the bowl to pick out a treat.  He was a bit confused, though, as to why he couldn't then enter each house and make himself at home.

After Halloween, we began preparing for Thanksgiving.  Wesley LOVES crafts, so his occupational therapist helped him make a turkey this year.  It is such a joy to watch the look of concentration and complete satisfaction on his face when he is squeezing a glue bottle or pressing items together with glue.  So when his OT used autumn leaves for the turkey's feathers and Wesley was able to glue them onto his turkey, he was completely delighted.

Zach also enjoyed creating turkey crafts at school and dressing as a Pilgrim for his class's Pilgrim party.  He proudly wore his costume at school, and was even more excited that God provided an opportunity for me to help out in his class.  Throughout the morning I would catch him looking over at me and smiling, so happy that I was there to share this event with him.  He has so much fun at school and does such an excellent job there, and I was thankful that God gave me this time to be with him and enjoy this part of his life with him before the baby is born.

One thing I am particularly thankful for this season is how much God has worked in Wesley's life and Zach's heart, that we are now able to enjoy activities as a family.  It warms my heart to see Wesley come over to Zach, watch him closely, and then push his way in for a turn at whatever activity Zach is engaged in.  What joy it brings me to see my boys trick-or-treating together and hear Zach informing people "I'm getting Smarties for my brother, because those are his favorite!".  I love watching the expressions on Wesley's face as he concentrates, trying to understand what is going on and how he might be able to participate.

As I watch my boys together, I thank God for blessing me with such a wonderful family.

Friday, November 18, 2011

Leaves, Leaves & More Leaves

With eight trees in our yard, we usually fill up at least 30 lawn bags of leaves every fall.  This year has been no exception.  The difference is that now Mike has a little helper.  At five years old, Zach does a great job of helping rake and stuff the leaf bags.  Wesley mainly enjoys running through the piles of leaves and scattering them once Mike and Zach have worked hard to gather them together.

Of course, Zach is pretty good at helping Wesley scatter the leaves too!

As noted in the picture above, Wesley would much prefer to run through the edges of the leaf pile than end up in the middle of it.  He still loses his balance quite a bit, which means that he falls over every time he runs into too deep a pile of leaves.  And he is definitely not a fan of falling face first in the leaves!

As long as we help him, though, Wesley enjoys exploring all the new textures!

He even comes back for more fun!  I love the look of delight in his eyes as he sees the huge leaf pile in front of him.

Tuesday, November 15, 2011

Five Years

Dear Zach,

I promise, I haven't forgotten your birthday.  How could I ever forget about the birth of my firstborn son?  Things have been crazy around here as I work through pages of to-do lists to get ready for the birth of your brother, and somehow my birthday letter to you was pushed down to page two on one of those lists.  Please forgive me for my tardiness!  When you're my age and have kids of your own, maybe you'll understand.  On the other hand, as it seems that you have your father's gift for timeliness, maybe you'll just need the gift of understanding others in their weakness.

Zach, every time I look at you, I am amazed at how quickly the past five years have gone by. How can it be that just five years ago I was holding a newborn baby in my arms for the first time and trying to figure out what being a mom was all about?  Now I look into your eyes and see a boy who is so very grown up.

I love our conversations together, when you talk about your day at school or your interactions with others.  You still see the world in black and white, and sometimes it is hard to not laugh as you use words such as "steal" and "lie" for activities that would better be characterized as accidentally taking something and intending to return it or misunderstandings between two individuals.

Your vocabulary is growing by leaps and bounds, and I am amazed at your logic skills at such a young age.  Your ability to distinguish between specific word choices based on their precise meanings reminds me very much of your father.  I can tell that by the time you are a teenager I will just have to acknowledge the fact that you are smarter than me and able to use reasoning skills far surpassing my own to explain why my instructions to you are not correct or accurate.  Despite this, God will still call you to honor your mother.

Since Wesley joined you in your room, it has been a delight to watch you quietly come out every morning at six-thirty to read your Bible story books in our closet.  It amazes me that you are able to read every word by yourself and then discuss what you read with me.  This morning, after reading about Solomon's wives worshiping idols, you were quick to tell me that at one time Solomon loved and followed God but then over time his heart became proud.  I pray that as you continue to read about God and His word, that God will gently but firmly draw you to Himself and a saving knowledge of His Son Jesus.

You have never had a huge interest in music, but just recently I have heard you singing both songs you've heard and also songs you make up on the spot.  It was music to my ears last week when I heard you singing a song about how Jesus did not want to die on the cross but He did it anyway because He loves us so much.  Oh how I pray that God will cause these words to sink deep into your soul and that you will grasp the depth of God's love for you as expressed by the death of His Son for your sins.

As Wesley has grown older, it has been a joy to watch how you have taken him under your wing.  Your patient voice as you teach him his shapes or help him with a puzzle is just precious to watch.  I love listening as you play with him and encourage him to try new things.  And at night, as you are supposed to be sleeping, it is difficult to drag myself into your room to ask you to be quiet when I hear you practicing sounds with him and encouraging him to imitate you.  When I hear the two of you laughing together, it is music to my ears.  As I think about it, it is so very evident that God perfectly placed both of you into our family.  You are the perfect big brother for Wesley.  You are patient with him but yet faithful to keep encouraging him and reminding him to do what is right.  I am often grateful for your black and white perspective on things when you remind me that Wesley is licking something or engaging in a behavior we are seeking to curtail.  Many times I am tired and would prefer to just ignore Wesley's behavior for a minute or two, but your faithfulness to point it out and remind me that he is "NEVER allowed to do that" is very helpful.

One of my favorite things to watch you do these days is build with your LEGOs.  You love to follow instructions, and your new favorite thing to do is pull out a set of LEGOs, grab the instructions, and follow them exactly until you have completed what it is that you are building.  Truly, I am amazed at your ability to follow the instructions without messing anything up.  And I love seeing your huge smile as you show me what you have built.  It is fun to see you succeeding at something that you love so much but that is also challenging to you.  And I am so proud of you for working hard at building things rather than getting frustrated and angry when things aren't going right.  I know that is just another sign that you are growing up.

I love you so much Zach, and I am looking forward to enjoying this next year with you.  You are becoming my companion, and I am praying that together we will enjoy year five tremendously!


Friday, November 4, 2011

The Least of These

With baby #3's impending arrival, it has been easy to focus on the new addition to our family and forget about the burden for orphans with special needs that God has placed on my heart.  But in the past week, God has used several blog posts to overwhelmingly remind me of the plight of orphans with special needs around the world.  Just today I watched a video about older boys in Eastern Europe, most of whom cannot speak or even walk, who have been neglected for far too long.  As I watched this video, I melted into tears for the second time in as many days as I thought of my dear Wesley.  My adorable and delightful son who is God's precious gift to our family could easily be one of those boys someday if he had been born in a different part of the world.

Speaking is such an incredible struggle for him that I could easily picture him never speaking without significant intervention.  Without the numerous hours we have invested in feeding therapy, it is very likely that he would be unable to eat solid foods.  If he were in an orphanage right now, he would be a non-verbal boy transferred to a mental institution at the age of five to live out the rest of his life alone.  He would spend far too many hours of each day just lying in a crib and staring up at the ceiling - lost and forgotten; forsaken by the rest of the world.

As I imagine my son, whom I love with my whole heart, enduring such horrific conditions, my heart breaks for the countless children who will live out the rest of their lives in these very situations.  I think of the joy that Wesley exudes and the delight that he brings to all those around him, and then I realize that because of sin and depravity in this world, countless other boys and girls like him will never be given the opportunity to enjoy life and bring joy to those around them.  Because they are not seen as created in the image of God, they are instead given just a shell of a life as if they are unworthy of being honored as creations of a holy and righteous and loving God.

In truth, Wesley, and all people who have any sort of disability, were created by God's sovereign hand and are infinitely loved by Him.  Therefore, how we treat them, both through our action and inaction, clearly shows whether or not we believe God's word to be true and whether or not we value what He values.  More than that, how we treat the least of these is directly related to our love for our Savior.  For Jesus Himself says in Matthew 25 that as we do (or do not do) to the least of these, so we also do to Him.

When we face Jesus on the last day, may we all be able to say, "when I saw people with disabilities, I saw them as created in Your image.  I loved them and I reached out to them and cared for them, for in them I saw the face of God."

Wednesday, November 2, 2011

F is for Fish

The past two days I have seen a whole different side of Wesley.  While reading a book to Wesley yesterday morning, we came to a page with a fish on it.  Wesley immediately climbed out of his cube chair, ran to the other room, threw all the toys out of his toy box, and came back with a little blue plastic fish he had received as a prize from the dentist a few weeks back.  I didn't even realize he knew this fish existed, much less that he was able to make the connection that it was a fish, just like the fish in the book.

For the rest of the day yesterday (and continuing into this morning), Wesley would run up to me every five minutes or so, tug on my arm, show me his fish, and say "fff".  When I responded with, "Yes, Wesley, that is a fish!", he would give me a huge smile, say "fff" several more times, and run off to play again.  Other times, he would run up to me, put his arms in the air for me to pick him up, say "up" after a verbal prompt, and once in my arms show me his fish so that we could say "fish" (or "fff") back and forth a few times before he would squirm back down again.

Watching Wesley's joyous grin and seeing the twinkle in his eye as he would exuberantly run up to me to tell me about his fish has been delightful.  How I pray that this is the beginning of him seeking to initiate verbal communication with us rather than just speaking words when prompted.  Maybe as he realizes how much fun it is to tell Mama about his fish, it will click with him that he can tell me about other things too.

Please join us in praying that this will be the case!