The Power of a Word

After a lengthy and formal process, Wesley was diagnosed with autism this past Friday. I hope to write more on this at a future time, but for now, these are the thoughts that cross my mind as I chokingly whisper the phrase "Wesley has autism" and seek to grasp all that this entails.

It hurts.

It explains.

It grieves my soul.

It provides help.

It crushes hope.

It offers hope.

It devastates dreams.

It leads us down a new path.

It closes doors.

It opens even more.

It fills my heart with questions.

It gives answers.

It increases fears.

It grants opportunities.

It breaks my heart.

It points me to healer of the broken.

The Lord is near to the brokenhearted and saves the crushed in spirit. Psalm 34:18

Surely he has borne our griefs and carried our sorrows. Isaiah 53:4a

But this I call to mind, and therefore I have hope: the steadfast love of The Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. "The Lord is my portion," says my soul, "therefore I will hope in him." Lamentations 3:21-24

IEP Miracles

To truly begin at the beginning, I must go back to the meeting we had with Wesley's team at school last November, the one in which we pushed for Wesley to have more time each day in an inclusion classroom. At this meeting, we were stonewalled, with his team refusing to increase his time in inclusion since they had no data to support that he would be successful in such an environment. Of course, there would be no way to acquire such data without placing him in the classroom and collecting the data, which becomes a cyclical problem. With no placement in an inclusion class, you can collect no data. With no data, you cannot be placed in the class.

After much pushing on our part, toward the end of this meeting we saw God work in the hearts of these ladies in a powerful way. While standing firm on their stance that Wesley could not have more minutes in an inclusion classroom each day, they did agree to move around the times that he attended this class so that he could participate in circle time and learning times rather than just in center and free play times.  Looking back, I can see how God burdening us to push for this is part of what He used to completely change the trajectory of Wesley's education.

Fast forwarding to this past January, Mike and I began discussing and making plans for how we would make adjustments to our family life over the next six years to accommodate for Wesley's schooling. We had been told for two years that the only self-contained classrooms in our district were in elementary schools on the south end of our district, which are 30-40 minutes away from us. So we planned on having Wesley bused far away for his elementary school years. We assumed, based on his placement during preschool and the school's resistance to his time in inclusion being increased, that he would obviously be placed in one of these self-contained classrooms.

Then, toward the end of February, Wesley's teacher told us that as part of the preparation for transitioning to elementary school, representatives from both his home school and the school with the self-contained class came in and evaluated him. She was very surprised, and told me with much excitement in her voice, that Wesley's home school thought there was a possibility that they could provide for all his needs with their top levels of support. At that point, a lot of people began evaluating Wesley, looking at what he needs, and comparing it to what is provided at both our home school and the school that has the self-contained class he would be placed in. At his IEP (Individualized Education Plan) meeting, everyone would present their perspectives on what they felt would be best for Wesley and where they would recommend that he be placed.

Obviously, we felt that it would be best for our family as a whole if Wesley attended a school just 10 minutes from our home. And it was exciting to think that he could be in a less restrictive environment with more opportunities to interact with his peers along with many pull-out times for individual teaching. But more importantly, we just wanted Wesley to be placed in the school that was the best fit for him with the best opportunities for him to learn and be successful. And we wanted him to be placed with a teacher who was a good fit for him. We were cautiously excited as we thought of the possibility of Wesley being nearby this next year, but we didn't want to make this decision based solely on our convenience. 

Whatever the outcome, our conversation with Wesley's teacher was another moment when I was reminded of how great our God is. He cares for Wesley, and He cares for our family. He knows what is best for us, and He can move mountains to provide for His precious children. He can open up opportunities for Wesley that didn't even exist and provide options that we didn't even know to ask for (and that wouldn't have even been possible, except that suddenly they were!)

Isaiah 46:3-4 says, "Listen to me, O house of Jacob, all the remnant of the house of Israel, who have been borne by me from before your birth, carried from the womb; even to your old age I am he, and to gray hairs I will carry you. I have made, and I will bear; I will carry and will save." God created Wesley in his image, with his own unique strengths and weaknesses, and He promises that even to Wesley's old age, He will carry him. He has made Wesley, and as our loving Heavenly Father, He will bear our burdens for us and with us that we bear with Wesley on this earth. He will carry us and uphold us through each unique trial and joy that we face due to the unique way that He created Wesley. And one day, if Wesley trusts in Him, He will ultimately and completely save him!

So, we prayed.  We prayed that Wesley having the opportunity to attend school at his home elementary school would be one of the ways that God chose to carry us and help bear our burdens over the next six years.

Last week, on the morning of Wesley's IEP meeting, a friend sent me the following verses from Exodus 14:13-14: "And Moses said to the people, "Fear not, stand firm, and see the salvation of the LORD, which he will work for you today. For the Egyptians whom you see today, you shall never see again. The LORD will fight for you, and you have only to be silent."" As I read those words, I felt The Lord giving me His peace that surpasses all understanding. We had no reason to fear or be anxious as we went into our meeting that morning. The Lord would fight for us, and for Wesley, and we had only to be silent. As I prayed that The Lord would actively move mountains on Wesley's behalf, I was very aware of His peace flooding my soul.

Wesley's IEP was very different this year than it has been in years past. His teacher and therapists had taken all of our goals for Wesley into consideration and written 11 excellent goals targeting his greatest needs. As well, unlike in years past where we had to push for adaptations and supplements to be added, they were very willing to add all the supplements/adaptations to his IEP that we felt were important for him to learn to the best of his abilities.

When it was time to talk about placement, Mike and I quickly realized that every single person at the table believed that Wesley has grown so much in the past year that the best place for him to be for kindergarten was in an inclusion classroom at his home school. The special education teacher at his home school explained how he would be pulled out with her for times of 1-on-1 or small group teaching, she would go into the classroom to help him throughout the week, he would receive extra assistance for PE, art, music, recess, lunch, and any times in the classroom that he needed it, and they would provide all adaptations (seating, sensory breaks, etc...) he needed to succeed.

As we listened, I realized that there was nothing we needed to ask for; no areas in which we needed to fight for our son. God had gone before us, fighting for his precious Wesley, and we had only to hold our peace and be silent.

When we walked back to Wesley's classroom with his teacher, she was very excited to tell us that this is an amazing opportunity for Wesley, most elementary schools in our district don't provide the extent of supports that Wesley will be provided, she is absolutely amazed and surprised herself with the amount of 1-on-1 help Wesley will receive in an inclusion classroom, she is beyond thrilled that he will not be in a self-contained classroom next year, and she thinks he will thrive in his new placement.

Then today, the district kindly arranged for me to observe at our home school.  While watching the special ed teacher work with a small group of boys, I found myself thanking God for giving Wesley the gift of such an amazing teacher next year.  She truly is fantastic.  Her manner of teaching, her patience, her ability to manage the class while both effectively teaching four boys at different levels and also encouraging these boys to interact with each other and work on social skills, and her wealth of experience working with special children like Wesley were truly awe-inspiring to watch.  I continue to pray that his inclusion teacher will be equally amazing!

God has given Wesley an unexpected gift, and we couldn't be more thankful! We rejoice and thank God for providing for Wesley in amazing ways!

* photo credit Katie Fenska Photography http://katiefenskaphotography.blogspot.com/

Christmas Play Scheme

The Christmas season has always been my favorite time of year.  With the sparkling lights, brightly decorated homes and stores, jingling music, and beautifully decorated cookies, each day is filled with excitement and anticipation.  But in the midst of all the excitement, I want my children to know who it is that we celebrate each Christmas and why we celebrate Him. Even more than the anticipation that builds up in their little bodies as they wait to open their Christmas presents, I want them to long with anticipation for the day when they see Jesus, their Savior, because they have learned about and rejoiced in God's love for them from the beginning of time, His promise to send a Savior, and His promise kept when He sent Jesus to be born a stable that glorious day.  Christmas is the day that God came to dwell with us, to keep His promise, and to give us eternal hope and joy.

I would like to take some time this Advent season to share some of our family traditions as we seek to keep Jesus at the center of this holy day even in the midst of the singing snowmen and twinkling lights that are so quick to catch my boys' attention.

When Zach was younger, one way that we would tell him the Christmas story was to re-enact it using the Fisher Price nativity set.  This year we discovered how we can do this with Wesley as well.  In school this fall, his teachers discovered that he does a good job of learning new play schemes when presented with visuals to guide his play.  We decided to implement this same strategy to help him act out the Christmas story using the nativity.

Each night, after reading the Christmas story to the boys, we pull out our visuals and walk Wesley through the play scheme.  As soon as he sees the visuals, he gets excited to act out each step.  He quickly starts searching for the angel and Mary so that he can begin to play. Right now, he needs significant assistance to act out the story, as this play scheme is much more complex than the play schemes he normally learns.  But it is my hope that not only will he be able to independently play through the entire play scheme by Christmas day, but he will also begin to understand the Christmas story as we talk about it each night.  Perhaps Jesus Himself will open Wesley's eyes to a childlike understanding of who He is and how much He loves Wesley.

Will you join me in praying to that end?

Juggling Life and Other Thoughts

After over a month of silence on my blog, it seems hard to come back.  These past few months have been a season of survival, with little reflection taking place. To just get out of bed each morning, accomplish everything that must be done that day without even tackling my long to-do list, and make it to the end of the day when I can fall back into bed and get a few hours of rest before starting all over again is considered a success.  I feel like I have been handed a full set of china dishes and assigned the task of juggling them.  Handling fine china is a delicate task, and juggling with it just seems plain foolish.  But yet, this is the lot I have been assigned in life, so this is what I do each day.  And each day, it seems, I drop at least one plate, pick up the pieces, glue it back together, and try again.

My mind is numb.  I struggle to process thoughts and conversations.  I find myself sluggish, moving more slowly than normal and unable to speed up.  My mind seems slow too.  The headaches are constant, a steady drone filling my head and lowering my tolerance level for all things loud and whiny. I am still going, putting one foot in front of the other as fast as possible, but it just feels like my body is trying its best to shut down.

In the midst of this, sitting down to write seems daunting.  But yet, there are so many things I wish I had taken the time to write down, to remember, this autumn.

Zach's birthday - his seventh.  He has walked through a very difficult year, and the scars are evident, but he strong, and I hope resilient.  I pray that God will restore his soul.

The turkey Wesley made at school on the day I observed - how he initiated going over to the art table during center time, cut the circle out - with scissors - all by himself, followed instructions, and completed the project.

Liam's birthday - his second.  Oh how I adore this boy.  His joy is a ray of light in the darkness.

Wesley's school placement this year, and how I visibly saw God's hand at work, changing hearts, moving mountains.

An update on Liam's development.  These past two years have opened my eyes to the struggles of families who have family members with invisible disabilities.  While Liam does not have a disability, his struggles are very real, and very invisible.  It is difficult to advocate for a child whose needs are not seen by the untrained eye.

Wesley's words, and phrases, and diction, and counting, and using visuals to learn new play schemes.

God's healing of Wesley's ears - it was a very unremarkable healing, but an unexpected gift nonetheless, which prevented the need for a fifth surgery.

My thoughts about my lot in life, what I had imagined or dreamed my life would be, and where it is.

Our photo shoot this spring with a photographer from Easter Seals - what an honor to be selected to have a photo of our boys prominently displayed in the entrance to our therapy center.

The miracle I witnessed - I who did not believe in miracles, or at least not miracles performed for me or those nearest and dearest to me.  As Leif Enger says, "No miracle happens without a witness.  Someone to declare, Here's what I saw.  Here's how it went.  Make of it what you will."  Someday, I want to take the time to open my heart, to share our miracle, that others can see what God has done and make of it what they will.

Our photograpy session this fall with a dear friend, who beautifully captured photos of our family, perfectly catching the personalities of each of our boys.

Potty training - successes and failures and where we are now.

Forgiveness.  Some things are hard to forgive, but the Lord is continuing to work on my heart, and in the process showing me more of who He is.  He keeps count of my tossings.  He puts all my tears in his bottle.  This I know, that God is for me.  My sufferings grieve him.  He sees them. He does not forget.  And vengeance is His; He will repay.

Perhaps someday I will go back and add to these thoughts.  For now, my goal is to enjoy the Christmas season with my family.  We have much to celebrate this year.

His Perfect Way In The Storm

"This God - his way is perfect; the word of the Lord proves true; he is a shield for all those who take refuge in him. For who is God, but the Lord? And who is a rock, except our God?" Psalm 18:40-31

It doesn't seem like my circumstances are good right now, and as I look around, it appears as if things are falling apart. But I can trust that God's way is perfect. He says it is, and His word proves true. Even now, I can look back and see how God has provided for us in the past and how His word had always proven to be true. He has been faithful to us, given us new mercies every morning, and showered us with His steadfast love. And that hasn't stopped today. And it won't ever stop.

As I look around at my circumstances and fear rises within me, I quickly realize that there is nowhere else to go, no one else to whom I can appeal. There is no rock except our God. Health is not a rock I can stand on. Job security is not a rock I can stand on. Respite from the hardships of life is not a rock I can stand on. But as I stand on Jesus, my solid rock, He will be a shield and a refuge for me. This doesn't mean the waves won't still crash on the rock and lap at my feet, and the rain won't still pour down on me. But my feet are steady on the rock, and my body is shielded from the rain.

I have found refuge in the Lord, and in Him my hope is secure. 

Oh Lord, help me to quiet my soul, be still, and wait patiently for you. Calm my anxious thoughts. For you will not allow me to be cast headlong. You will uphold my hand. (Psalm 37)

Suffering and God's Goodness

"Why does God create babies that have disabilities, or that can't live?  Why would He do that since He loves his people?"

This was the question I heard from my six year old's lips one night at the dinner table.  This was the question I struggled to answer as tears streamed down my face.  This was the moment I had been waiting for, but yet my heart was crushed within me as I struggled to answer his question.

Four years ago, when Wesley was born, Zach was only two-and-a-half years old, and he had no idea that there was anything different about his brother.  Sure, he noticed that we now went to countless doctors' appointments and that therapists often visited the house to spend time playing with his brother, but to him, this was his new normal.  Didn't all babies receive therapies to teach them how to do new things?  Didn't all babies visit multiple specialists to closely examine every part of them and address health concerns?  Even as Wesley grew older and his differences became obvious to others, Zach never seemed to notice.  He loved Wesley for who he was and was oblivious to the fact that other children his age had far surpassed him developmentally.

But this past year, Zach's eyes have begun to open to the reality that his brother is different.  He has been listening to the adults around him discuss his brother for four years now, and as he grows up, he is beginning to understand everything we have been talking about.  A few months ago, as Wesley was stimming, my head turned sharply in surprise as Zach casually said "Wesley does that because he has special needs."  Thus began our conversations about how God creates everyone different.  We have discussed how God creates some people that are tall, some people that are short, some people that learn things quickly, and some people who need extra help and time to learn things.  Then we talk about how God loves everyone and how He creates everyone exactly the way He intends.  We are all fearfully and wonderfully made.  God has not made any mistakes.

These are easy topics to discuss when the conversation is generalized.  I have had many opportunities to talk with Zach about being kind to others who are different than us, being patient with others who do not learn things as quickly as we do, and loving others even when their differences annoy us.  The conversation is much more difficult when we talk specifics.  My own faith is tested as we talk about Wesley and as Zach asks specific questions about what these delays really mean for him.  Do I really know that God's works are wonderful?  Does my soul know it very well?  I often fight back tears when Zach discusses the future, casually mentioning things such as "you will be a grandma when Wesley and Liam and I have children".  My heart is crushed within me as I sadly smile at him, not ready to give him the full picture quite yet.  He will know soon enough.

But none of these conversations have been as difficult as the night that Zach asked me why.  I listened to the trust in his voice as he asked these questions with the faith of a child. He was not accusing God of anything, but seeking to understand, in his young mind, why the God that he knows to be good and loving, and who creates all things fearfully and wonderfully, would choose to create a child in such a way that they would suffer or even die.  And as I tried to answer my son, stumbling over the words, I wept.  In that moment, it felt as if I had a minute or two to explain God's goodness in the midst of suffering in words that a six year old could understand, but no words were sufficient to the task.  Nothing felt adequate.  So, I stumbled through answers about the effect of sin in this world, the promise that God will work all things for good, and the truth that really, I just don't know.  I don't know why God creates babies with holes in their hearts, non-functioning or deformed organs, life-threatening diseases, and other physical and cognitive disabilities.  I don't know why He created Wesley with a chromosomal abnormality either.  But, I do know that God is good.

And so, that's what we talk about, Zach and I.  I don't know what the future holds.  I don't know why God has allowed Wesley's specific sufferings.  But I know that God is good.  I believe this with all my heart.  And, more than anything, I want Zach to believe this too. Disability will be a part of his life, so I pray that even though he may not understand the whys of disability, he will trust that since God has formed Wesley's parts, knitting him together in his mother's womb, this means that Wesley is fearfully and wonderfully made.

For now, when Zach speaks about Wesley's special needs, he speaks of them in a matter-of-fact way.  Disability doesn't pain him or make him think any less of Wesley.  It just is what it is. But I hear a tenderness in Zach's voice when he brings up this topic.  For example, just this week, as we observed one of Wesley's therapy sessions from the two-way glass, I saw a look of concern come into Zach's eyes as he saw Wesley's therapist pull out something new and set it up.  He turned to me with apprehension and said, "That is too hard for a four year old with special needs. Does Miss Jess know that Wesley has special needs?" His heart of compassion and love for his brother is beautiful, and his innocence as he asks these questions touches my heart.

As Zach grows older, his innocence will fade and the realities of disability will set in.  But I pray that when they do, his trust in God and belief in God's goodness and perfect plan in the midst of disability will remain.

Joy and Pain

A dear friend recently said that enormous loss tears a person into two.  It divides the heart so that no emotion will ever again be whole and unmixed.

As I sat on our deck this afternoon, enjoying the laughter coming from my two little boys playing together, these words rang in my ears.  You see, this was the first time I watched their roles completely flip, the older following as the younger led.  My boys had been playing a game in their play house, darting in and out of the front door and slamming the shutters on the windows open and closed as they played a wordless game of peek-a-boo. I was lost in my thoughts, listening to them giggle together, when suddenly I realized Liam was climbing the steps of the deck, holding a broken-off shutter, and saying "Mommy, help! Window! Fix it!" Wesley followed close behind, watching his younger brother closely with his head cocked to one side.  Looking at the two of them, I was so proud of my younger son for taking initiative, coming to me for help, and verbally asking me to do something rather than just screaming. Since he watches his older brother so closely, seeking to imitate every move of the brother he so very much adores, we are working hard to remind him to talk to us when he needs help rather than just yelling.  And today, he did.  He ran across the entire yard to ask me to help him fix his problem.  He even brought the shutter just in case it wasn't clear.

But even as my heart filled with joy, delighting in how my younger son was not only taking the lead in coming to me for help but also setting a beautiful example for his big brother, I also felt that deep, throbbing pain creeping back up to the surface as I looked past my precious baby and into his big brother's eyes.  The confused but yet trusting look in my big boy's eyes pierced my soul as my heart broke for him once again.  It felt as if I was watching a pivotal moment, where big brother was relinquishing his role to little brother, realizing the tide had shifted and it was time.

As I watch my boys grow up together, I am sure that this divided heart will become a constant fixture within me.  Joy will often be pierced with sorrow.  There is just no way around it.  It was never supposed to be this way.  This was never supposed to happen.

Jesus, give me the strength to walk this road.  Some days it feels as though my heart will explode with pain and grief before I ever reach the end.  Do not let me lose heart.  Help me to keep my eyes on you, trusting that you will uphold me.  My broken and divided heart is in your hands.

"So we do not lose heart.  Though our outer nature is wasting away, our inner nature is being renewed day by day.  For this slight and momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen.  For the things that are seen are transient, but the things that are unseen are eternal." 2 Corinthians 4:14-16