Monday, May 20, 2013

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

Thursday, May 16, 2013

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!

Friday, May 10, 2013

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.

Friday, May 3, 2013

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.