Sensory Processing Disorder

Sensory Processing Disorder.

It is real.  It impacts daily life.  All three of my boys have it.

I have debated writing these words publicly, as I realize that my boys may not want to have this label once they are older.  But the fact of the matter is, this is real life.  This is what we are dealing with right now, and it is what my boys will continue to deal with every day of their lives.  And hiding it does not help.  It will not make anything better.

On the other hand, I want to be sensitive, as one of my children is already aware of differences between him and other boys.  He is afraid to try new things, for fear that others will make fun of him if/when he fails.  Unfortunately, he has reason to fear.  He has learned from experience.  So he stands by as other boys run and play with skills that come naturally to them. Or he compensates by acting up to disguise his inability to keep up with his friends.  And this breaks my heart.

Every day we live with the negative impacts of this disorder.  Every day we face new challenges and discover new hurdles to climb.  Every day I pray that God will help my boys to overcome these great challenges that He, in His sovereignty, has seen fit to give to them.

While each of my boys is impacted by this disorder differently, I see many similarities between all three.

They are all sensory seeking, constantly on the go with a never ending motion and an inability to sit still.

One of my boys seeks sensory input to such an extreme that he is almost constantly seeking visual, vestibular, and oral input.  It is nearly impossible to provide him with enough input through therapy and other activities throughout the day in order to prevent him from self-stimming.

My boys are always seeking proprioceptive input, crashing into objects and people as they seek the deep pressure this provides.

They struggle with motor planning, making fine motor and gross motor skills difficult or even impossible for them to master.  With two of them, I also see struggles with motor planning affecting their speech patterns and feeding skills.

They lack an awareness of where their body is, and along with this comes a lack of coordination.

Containers affect them.  If a food looks different or is presented in a different way, they won't touch it.  In general, they are very sensitive to textures and tastes and as a result have limited diets.

Structure is very important to them.  If anything is out of the ordinary, it is difficult for them to adjust and spontaneously do something different.  I have learned that if we deviate from our daily routine even in the smallest way, it is very important to prep them beforehand on what we will be doing and what my expectations for them will be.

Loud or sudden noises startle one of my boys and send him running in a wild frenzy with his hands over his ears.

One of my boys seems to not notice even extreme heat or cold, his body unaware of the need to either bundle up or get out of the heat.  Another of my boys is bothered by even the slightest change in temperature, his body intolerant of any adjustment it might need to make.

They struggle to control their emotions, going from 0 to 100 in a matter of seconds.  Temper tantrums are a regular occurrence around here, with emotions raging out of control and boys unable to regulate their bodies once something has gone wrong in their environment.  I am often unaware that something is even wrong until someone is screaming.  And then it is a full-time job to help calm one child while trying to prevent the situation from escalating with other boys going into sensory overload from the noise and joining the fray with a meltdown of their own.

Therapy has been a godsend for my boys, and I am so grateful for all of the help their therapists have provided for our family.  We have many techniques, routines, and activities that we incorporate into our daily lives to help our boys as much as possible. And we hope and pray that over time our boys will learn how to individually incorporate these techniques into their own lives to better help them to regulate themselves as they grow older.

My prayer for my boys is that as they grow up, they will be able to fully function as boys and then men in society.  I pray that they will be able to develop and maintain friendships with their peers and interact with others in socially acceptable ways.  I pray that they will be competent in doing normal activities such as riding a bicycle, throwing and catching a ball, and playing sports at a recreational level.  I pray that this disorder will not affect their ability to succeed in school and then later in the work world.  But most of all, I pray that they will grow up to love Jesus.  I pray that in their weakness, they will find Him to be their strength.  I pray that their disorders will cause them to see their need for Jesus and that their dependence on Him will be even greater because of the struggles that they face.  May the very thing that causes them pain and sorrow end up being the tool that God uses to shape them into humble, godly men after His own heart.

I stood a mendicant of God before His royal throne, 
And begged Him for one priceless gift which I could call my own. 
I took the gift from out His hand, but as I would depart I cried, 
"But Lord this is a thorn and it has pierced my heart; 
This is a strange and hurtful gift which Thou has given me." 

He said, "My child, I gift good gifts and gave my best to thee." 
I took it home and though at first the cruel thorn hurt sore, 
As long years passed, I learned at last to love it more and more. 
I learned He never gives a thorn without this added grace, 
He takes the thorn to pin aside the veil which hides His face. 

 Elisabeth Elliott

Baby Steps

What does it look like to be a sensory kid?  For one of my kids, it is all about the container.  If it looks different, or feels different, he won't try it.

This means that we have been unsuccessfully trying to transition him from a bottle to a straw cup for six months now.  Last week, his feeding therapist told me that despite all of the speech issues that can come from a child drinking from a sippy cup, she has given up on transitioning him to a straw any time soon.  Instead she has settled on one particular sippy cup, which we now want him to at least try to drink out of.

With him being a sensory kid, we are thrilled with baby steps.

This is the bottle he currently drinks out of:

This is the cup we want him to drink out of:

So far, no way!  He won't go near it.  In an attempt to make this easier for him, we have mixed around the parts of the interchangeable cups, trying to help him slowly adjust to his new cup.  For a while, he would just sit with his cups, picking them up with a confused expression on his face and asking me over and over again, "milk?", "bottle?".  He would then put them up to his lips, say "mmm", and then put them back down again.

But after a week of hard work, we are very excited to say that he will now tolerate the following modification:

We still have a long way to go, but since we're measuring progress in baby steps around here, we're very proud of our little guy and how brave he was to try his new cup!

Valiant Warriors

This winter was filled with dangerous battles, moments of great valor, and narrow escapes.

Swords clashed, brother fighting brother.

And it was discovered that our youngest son has great skill wielding a sword.

I can only imagine the battles that will ensue once the swords are sent outside for the summer.  Good men will fight valiantly.  Bad men will be conquered.  Mommy will be protected.  And evil will once again be defeated, making the world a safer place.

My Boys and Their Daddy

My boys are so very blessed to have a Daddy who loves them, delights in spending time with them, and faithfully cares for them.  They know that they are never an inconvenience for their Daddy.  Even when they come to him with the most insignificant of problems, he always comforts them, hugs them, and shows them by example that what matters to them, matters to him.

My boys have a Daddy who invests in the details of their lives.  He gets down on the floor and plays with them even when he is exhausted from a long day's work.  He praises them for a job well done on projects they bring home from school.  He wipes away their tears.  He chases them and tickles them, joining in with their laughter.

My boys have a Daddy who cares about their souls.  He faithfully reads to them from God's word, answers their hard questions in a way they can understand, and prays with them. He is diligent in training them up in the way that they should go.

My boys have a Daddy who loves them very much and is determined to always be there for them.  And they know it.  They love him, trust him, and are happiest when they are with him.

I couldn't ask for anything more.

Ah-Choo!

Some days, everything goes perfectly according to plan.

You convince Mommy and Daddy to take you out for lunch.  Then, amazingly, your big brother and little brother both take naps.  So you fool your parents into letting you stay up.

Suddenly, you realize you have Mommy and Daddy all to yourself for the next two hours.  You quickly sucker them into playing a game with you by flashing your sweet smile.

What follows is a hilarious game of sneezing the hat off, which by the way is one of your favorite games.  You and Mommy and Daddy take turns putting on the hat and then nodding your heads while saying, "Ah-ah-ah-ah-choo!"  As the word "choo" is spoken, the hat goes flying off.

Each time, you giggle at the funny joke you are sharing with Mommy and Daddy.  What you don't know is that Mommy and Daddy love playing with you just as much as you love playing with them.

They delight in laughing with you.  Some day, you'll have to pull the wool over their eyes again and play another special nap-time game with them.

Verbal Extravaganza

 Dearest Liam,

It seems that in the time that it took me to blink, you went from a little 11 month old with huge verbal delays to a 16 month old who talks nonstop.  When I look at you, I see God's mercy and kindness, both on you and on our family.  I often have to fight back tears as you run around talking with such excellent articulation.  Your words are beautiful, my son. I never fully appreciated your oldest brother's gift with speech, but with you, I take nothing for granted.  Every new word that you say is a reason to rejoice.  Every two word phrase you speak is a moment for me to pause and thank God.

Your struggles are not over, and I am very aware of how sensory and motor planning issues may affect you for the rest of your life.  But for now, I am rejoicing in how God has used your wonderful therapists to give your little body the kick start it needed.

As I sat down to write, I thought I'd do a quick tally to see how many words you are speaking now.  Needless to say, I was shocked to find that I came up with a list of over 70 words in just a few minutes.  And many of these words are spoken so clearly that even a stranger could understand you.  As well, you started using two word phrases a month ago and regularly surprise me again as you put different words together.

I love sitting down with you to take your shoes off.  You start repeatedly saying "shoe off" until I remove your shoes.  Then, you give me a little grin, grab your socks, and start saying "pull" with such a groan that I must suppress a laugh at your exaggerated effort.

Another thing I love about you is that you enjoy walking around the house pointing out things that are off limits and saying to me with a very serious face, "No! No, no touch!"  Other times, when I'm emptying the dishwasher or something else that you are very interested in, you quickly run over and start touching everything.  Then you seriously look up at me, say "No, no touch!", give me your mischievous grin, and continue touching with a little giggle.  You are going to give me a run for my money as you grow up, little mister.  That much is already apparent.

You also do a great job of reminding yourself "no hit" before hitting me in the face, laughing loudly, and then going back to hit me again.  It seems that you are picking up on some of your big brother's less appropriate behaviors.  (You also love to spin in circles with him while laughing and saying "spin".)  Don't you worry; we are addressing these behaviors!  But the good news is that you will (hopefully) grow out of these things much sooner than he will, as it is obvious that you are doing these things out of imitation and admiration of your big brother rather than as a need for proprioceptive and vestibular input.

Which reminds me, one of my favorite phrases of yours is "Out? Ok!", which you say to me when I come in to get you out of your crib in the morning.  I particularly love this because you have picked it up from your big brother, who regularly asks and then answers his own questions, such as "I want snack!  Yes?  Ok!"  It is such a joy to me to see how closely you watch your big brothers and, in your admiration of them, how much you desire to emulate them.

In fact, when your big brother is napping, I have to be on my toes to catch you before you run over to his door, loudly proclaiming "open door".  I'm still not sure if you are missing him or his toys more, but either way, it is endearing to see how you notice that he is gone and want me to help you find him.

Then this morning you surprised me as I was packing you up to head out for speech/feeding therapy (which you are ever so close to graduating from! You just need to start drinking out of anything other than your bottle, which you are firmly attached to!)  As I told you we were going to see Miss Char, you looked up at me with your little serious face and said "Char. Eat." Yes, little buddy, that's right.  We're going to go see Miss Char and work on your eating skills. Clearly, your speech skills are good to go at this point.

And can I take a moment to be honest with you Liam?  Sometimes, as I listen to you speak with such effortlessness, I feel a twinge of pain in my heart.  It hurts to watch you already begin to surpass your brother verbally.  My heart sometimes feels like it's being tied up in knots as I hear your amazing clarity of speech and then watch your brother struggle so much to say a word.  I am so very proud of you.  And I want you to know that.  I will always be your biggest cheerleader.  But since I'm your brother's biggest cheerleader too, my heart breaks as I am reminded of just how hard this life is for him.  You see, I love him just as much as I love you, and watching your effortless speech is a reminder to me of just how hard everything is and will be for him in this life.  Please be patient with me, my son.  Please forgive the times that I have tears in my eyes as I watch your magnificent accomplishments.

While I am being honest with you, I pray for you, my son, that God will give you a tender but strong heart.  I pray that your heart will be strong enough to withstand the mocking that you will surely receive for associating with your brother.  And I pray that your heart will remain tender toward your big brother for the rest of your life.  May you always be patient with him, coming alongside him and guiding him through this life. It is only a matter of a year or so before you surpass him in every way.  When you do that, please don't leave him in the dust. Take him by the hand and help him.  Be his best friend and his protector.  Show this world what it means to love Jesus in the way that you love your brother.

I love you, my son.  Your laugh is infectious, and your joy permeates everything that you do. You bring sunlight into our home just by being here.  We are so blessed to have you!

Love,
Mama

* Your words at 16 months (at least what I can remember):  open, up, down, close, help, please, monkey, bear, circle, beep, bagel, pizza, milk, coke, more, door, car, shoe, sock, pull, off, no, touch, march, Bob (the tomato), run, Zach, bite, burger, fry, cow, dog, woof woof, pig, block, eat, duck, quack quack, night night, giraffe, pants, shirt, brush, toes, foot, cracker, all done, all gone, nugget, sit, push, spin, hit, medicine, yellow, blue, book, ball, hi, bye, juice, hug, poop, oh no!, oh my!, plate, fork, spoon, sword, baby, waffle, cookie

Four Years of Joy

My dearest Wesley,

Last week we celebrated four years of life, four years that have brought much change to our family and much joy.

This past year has been a big year for you.  You have now completed your first year of school, and we are so very proud of you.  As I look back on the past twelve months, I am amazed at how far you have come.  You now speak in two word phrases all the time, including your constant requests to us this week to "sing Birthday!"  You know all of your capital letters and more than half of your lowercase letters.  You are learning to count to ten, and I often hear you counting to yourself: "one, koo, fee, five, eight, nine, ten!  Yay!  Woohoo!"  You are your own best cheerleader, often praising yourself and cheering yourself on when you are working hard.  In fact, when we've asked you to do something you don't want to do, upon completion of the task, you will often clap for yourself while saying "Yay!"

This year you also learned to jump, walk up the stairs safely, walk down the stairs with supervision, and play much more safely on playgrounds.  Just this week, you climbed up the climbing wall at our park to go down the slide over and over again, determined to master the wall and so very proud of yourself every time you reached the top.  You have made great strides forward with fine motor skills, now drawing circles and crosses along with the vertical and horizontal lines we used to work on.  You do an excellent job of showing us how to draw a cross, first sliding your finger down the paper while saying "down" and then sliding your finger from left to right and saying "across".

We love listening to all the things you say now.  Last year you had about thirty words but still mostly used your picture board and communication device.  Now, you talk all the time. Instead of showing me pictures, I hear things like "eat yogurt" or "play outside" or "help please". As a result, I see so much less frustration in you because of a lack of an ability to communicate.  You tell us when you want to ride in the car, which toys you want to play with, what you want to eat, as well as who you played with at school.  You love to label things, such as "blue car" or "yellow block".  When we ask you yes or no questions, you answer them with ease, not even needing to pause to think about it.  You even tell us when you want to spin things, which is helpful since this is a behavior we are trying to curb.  Every time we drive past any fast food restaurant of any kind, I hear you calling out "eat fries" from the back seat with a hopeful voice.

I have also been encouraged recently with your willingness and ability to work more on diction and intelligibility in your speech.  Because of your struggles with oral motor skills and motor planning in general, speech clarity is difficult for you.  But as you grow older, we are able to work more on these things and are seeing such an improvement.  In fact, your love of letters has been such a help in this area, as we put together letters for you to work on sounding them out to make words.  You are by no means reading, but we are using these early reading tools to help you with diction since you love to learn this way.  We even found a fantastic app for Mommy's iphone to help with this, since using with Mommy's phone is always a draw for you.  In the past few weeks, you're slowly adding some "t"s and "s"s to your words. You now say "t-mummy" for tummy instead of "mummy", "ou-t" instead of "ouk", "s-poom" for spoon instead of "poom", and so on.  You still need that little pause to think about where to place your tongue, but the improvement is significant! We are so very proud of you!

You are such a sweet big brother, often sharing your snacks willingly and helping me to feed Liam while he is in the highchair.  You love to splash with him in the bathtub, and it thrills you to no end when he thinks what you're doing is funny.

And you are learning to play games with your big brother too.  You love to play Hullabaloo and a modified version of a Maisy Mouse matching game with him.  As well, games of chase, duck-duck-goose, and hide-and-go-seek in the dark with flashlights are always filled with much laughter from the two of you.

You have also grown tremendously this year in your ability to sit still and listen and to play independently. You now enjoy sitting in your cube chair and listening to us read you books, often listening to us read story after story.  I also catch you kicking balls around, building lego towers, stacking blocks, and building train tracks on your own these days.  Another thing you often do, which fills my heart with joy, is pull out your Bible story books from the shelf, paging through them, carefully examining the pictures, and babbling away as you are seemingly re-telling the stories you've heard me read so many times.

What brings me the most joy is seeing how very drawn you are to your Bible story books in comparison to any other book.  While you enjoy listening to any story, you will look at your Bible story books for long periods of time, often shocking me with how long your attention span can be for them.  You also suddenly have become interested in praying.  You fold your hands and sit quietly when we pray, saying "Amen" with us when we finish.  And you now repeat words to pray yourself as well.  Earlier this week, I was nearly brought to tears as I watched you earnestly pray to Jesus to help you after one failed blood prick for your annual blood draw.  After praying, you settled down, stopped fighting, and allowed the nurse to draw blood from your other arm.  Then you thanked Jesus for helping you.  Every woman in that room bore witness to how you brought your request to Jesus with the faith of a child and how Jesus answered your prayer, helping you  to sit still and obey even when you didn't want to. What a testament you were to the power of God and of His love for His children.

I love you so much, my son, and you bring such joy to my life.  I pray that this year you will understand even more of who Jesus is and how much He loves you, and that one day you will put your trust in Him as your Savior.  I pray that God will use your life to reflect His lovingkindness to all those around you, as it is evident that He is already doing.

Love,
Mommy