Wednesday, May 25, 2016

Toilet paper, blenders, Josh Groban, and a little bit of Jesus

You guys...
Stop what you're doing right now and say this:

I declare that JESUS is the Lord of this house and Satan and his cohorts have no power hear.  In the name of JESUS I command you to leave.

Then throw your crap in a blender, make yourself a green smoothie, put on some Josh Groban "You are Loved", and check your doorstep because God might just do something like this.

The ONLY way to combat the STUFF in our lives is through prayer.  The stuff that gets you down...discouragement, dread, guilt, pain, is all a tool of the enemy to take your focus from God.  So get to praying you guys.  

Until the next time :-), C

Saturday, April 30, 2016

Autism Awareness Month, Part 2: Unmasking the hidden disability

Micah's disability is hidden because if you spent some time with him, you may not know right away that he has struggles.  When you hear me describe life with him, you may think "my kid does that's normal".  When I hear that, I feel a pain in the pit of my stomach that translates into "you don't get's not normal."  

Micah's neurologist, developmental pediatrician, psychologist, speech therapist, occupational therapist, and physical therapist don't really have a name for Micah's struggles.  Overall he struggles with coordination and balance.  His brain is slow to communicate with the muscles in his body. Terms that have been used to describe him are apraxiaataxiadevelopmental coordination disorder, and sensory processing disorder.  The information that comes in can sometimes get tripped up when it is time to come out in either motor or behavioral responses.  He knows what he wants to say, but he can't say it.  He knows what he wants to do, but he can't always do it.  So he sits quietly and watches a lot or he tries and gets hurt or really frustrated.  
Most of the time I just stand in the back and watch

Here are some glimpses into Micah's life: 

Micah struggles with fine and gross motor delay.  This translates into the inability to dress/undress himself, write, feed himself, run, jump, pedal a bicycle, use the toilet.  This means that we have lots of messes, lots of struggles in school, and a kid that is lonely and bored most of the time. His body requires a lot of energy and focus to remain still, so naturally, traditional school/church/social environments are impossible.   Subjects like phonics which require auditory processing (translating what you hear into what you see and then using your fine motor skills to make a selection) are extremely difficult and nearly impossible right now.  He also struggles to remember and process directions that contain 2 or more steps.  So, I've taken on the role of teacher/sunday school teacher to try to find ways to teach him differently.  Family time and social events are tricky and we always have to have a contingency plan in case it is just too much for him.  Micah also struggles to control the pressure of his movements.  For example, when he reaches down to kiss his baby sister, he bonks her head and she screams in pain.  Or, he squeezes her too hard.  In his mind, he can't do anything right and he hurts people all the time.  I struggle not to be the helicopter parent...hovering over every movement to protect him and others.  

Home school is always fun!

Micah got a pedal go cart for Christmas.
This is easier because it is low to the ground and
doesn't require as much balancing ability.  
Micah sure does love his baby sister
Micah struggles with impulse control.  When he wants to do something, it is difficult to control his body as well as contemplate consequences.  One example of this is when he stuck his finger down my 7 week old daughter's throat.  We didn't notice right away.  He was just also made her stop crying?  He doesn't understand that she was choking or that he could've killed her.  (She is fine, by the way). Lack of impulse control also results in multiple injuries every day.  (Inability to watch where he is walking while he's focusing on walking and thinking about what he wants to do...then he falls, or steps on something sharp, or stubs his toe).  Micah also has no grey when he's hurt/mad/frustrated it is LOUD and INTENSE.  There is no quiet crying in our house.  This is especially fun at 6am when he wakes up each morning.  (haha)

Difficulties with impulse control also impact his ability to control or contain his emotions.  He wants to join in when others are happy and excited, but he can't calm down like the other kids. Anger is also an energetic emotion.  When we are angry, we have the impulse to scream, swear, hit, stomp etc.  This impulse is normal, but it requires a healthy skill to channel the energy without harming ourselves or others.  It also requires the ability to tolerate frustration.  Although Micah has worked VERY hard on his healthy coping skills, he will still hit, bite, pinch, scratch or hurt himself when he is angry.  Needless to say, we stock up on bandaids in our house and we have many comfortable "time out" spots.  

Calming down enough to fall asleep is very difficult, so Mommy helps with this.
It's a lot you guys...It's a lot.  It starts early and goes late.  We rarely get a break because babysitters don't know how to work with him.  At times we debate for hours over going to a restaurant or a movie because we know that it usually ends in disaster.  We get frustrated, we yell, we say mean things, we cry, we get discouraged, we worry constantly about the future, we are judged by other parents and kids, we get into trouble by teachers and are called bad parents by onlookers.  We struggle to balance attention to him, our daughter, our infant, our dog, our ministry, our marriage, our jobs, and our God.  

One of the most difficult struggles for me is knowing that he is aware of his differences.  He sees the kids that are quietly judging him...afraid of him...avoiding him.  He knows that he SHOULD know how to use a pencil, a fork, the potty.  But his body just won't do what it's supposed to.  I see him giving up...getting lazy...and this just terrifies me.  

It is also difficult to know that every day a new challenge could arise.  He could continue to get worse...although I do see quite a bit of improvement.  There is no way to tell what the future holds.  So, as I've said before, I will continue to trust in the one who has entrusted him to us...knowing that He loves him more than we do.  Stay tuned to hear how Micah continues to improve.

Until the next time :-), C

Tuesday, April 26, 2016

Autism Awareness Month, Part 1

April is Autism Awareness Month.  I have a number of friends who have children affected by autism and I tip my hat to you!  The respect I have for you is great.  My post today is in no way intended to take away the much needed attention that this diagnosis and these families deserve.  

My son doesn't have autism.  He's not on the spectrum.  He has a hidden disability, which means that when you see him you might not know that he struggles.  He has been assessed a number of times and it was determined that there is no definitive name for the struggles that plague him.  Some people run from having a label for their child.  I completely understand that.  For me, a label would help by normalizing our experience.  It would give us something to google when we're at our wits end and don't know what to do.  (Ha ha!)  It would help when someone asks what his struggles are.  Right now we say something like:  It's kinda like autism...but it's not autism.   

One of the ways that we, as special needs parents, continue to press on is by finding understanding from our peers.  Loneliness in this community is so can strangle the life out of us if we aren't careful.  When I encounter a situation where Micah or our family is misunderstood, I am tempted to withdraw...and many times I do.  We need you to try to understand...try to love and accept our kids.  In turn, we will try to be kind and understanding of you...and the obstacle of being friends with us.  We know that we aren't easy.  And sometimes our pain comes out in intolerance and picking apart all of the ways that you misunderstand us.  We're sorry.  Please forgive us and don't give up.  

With all of that being said, I hope you don't mind that I borrow the month of April to highlight my son and our family since we don't have a "Developmental Delay Awareness Month".  Though the labels are different, some of the struggles are the same.  Stay tuned to learn more about my man Micah, and how God flipped our world upside down when he gave him to us.  

Until the next time :-),