How ABM Works For Cerebral Palsy

Gotta love Facebook.  Before beginning ABM and now that we are currently doing it, I have found such great support and information from an ABM Facebook group for parents, caregivers and practitioners.

This week, a practitioner (who is also a grandma to a child with CP) posted this about how ABM works with Cerebral Palsy.  I wanted to share it  :)


HOW ABM WORKS FOR CEREBRAL PALSY
By Lisa Shusterman, Ph.D.

“Cerebral palsy is a disorder of movement, muscle tone or posture that is caused by injury or abnormal development in the immature brain. In general, cerebral palsy causes impaired movement associated with exaggerated reflexes or rigidity of the limbs and trunk, abnormal posture, involuntary movements, unsteadiness of walking, or some combination of these. (The Mayo Clinic)

Cerebral palsy comes from a problem with the brain – not the muscles. That is why the Anat Baniel Method (ABM) techniques that I use make a positive difference.

A typical child (without Cerebral Palsy (CP)) learns about the world through random movement. When you look at a typical baby, the baby is moving constantly and with ease. By doing so, the baby learns what works and what doesn’t work in order to function.

Unlike a typical baby, a child with CP has limited random movement, so he does not easily and does not naturally learn about himself and his body in space. Because he does not learn about his body and how it moves in space, his brain’s map of his body is incomplete. This leads to difficulty matching his intended movement to his actual movement. Because a child’s intention and resulting action do not match, he experiences himself in the world in a way that is less organized than the typical child. His sense of the world and how to be in the world are compromised.

For example, a child with CP may move both his legs together, not separately, because spasticity forces the two legs to always move together. So, his brain does not get the feedback from two legs moving independently and randomly that helps the typical child learn that he has two legs. Without a brain map of two separate legs it is difficult for a child with CP to learn how to turn, how to sit, how to balance, how to deal with gravity, and how to walk.

In my ABM lessons, I give the child with CP the ability to learn the information that a typical child gets automatically. I help his body move in ways that are akin to random movement and thus mimic the natural way of learning. This movement improves the signals that are sent to the brain and facilitates the brain to do what it is naturally designed to do, make sense of the world.

Recent scientific research supports this theory. We now know that the brain learns by making new neural connections. Changes and new neural connections take place in the brain when it is able to receive and make sense of information. The Anat Baniel Method is designed to awaken the brain so these changes can occur.

How does ABM cause this awakening and make the brain a better learner?  The elements of ABM–such as movement with attention, slow movement, movement with variation and flexible goal–stimulate the brain through the signals these movements send to it. The brain goes, “Hey, this is different. I want to pay attention to this movement.”  This painless/struggle free awareness is transformed into new brain pathways.

In my work with children with CP, I always start from where the child is currently functioning. A child cannot learn when he is forced to do movements that are not connected to where he already is. So each gentle movement is something he can recognize, relate to, and perceive as something interesting. It’s close enough to his current functioning that his brain can naturally integrate it.

ABM is different from the physical therapy (PT) most kids experience. PT repeats movements that may have no meaning to the brain whereas ABM is all about providing meaning to the brain and allowing natural learning to occur. As an added benefit, the techniques are so subtle and comfortable, the person with CP has a chance to relax – a rare occurrence for many people with CP.

Our ABM Journey

Doing a ''movement lesson"
with our wonderful
practitioner, Naomi

About 6 weeks ago, we began our journey with ABM (the Anat Baniel Method).  We are seeing such great progress in so many little areas.  We are excited to see where this journey continues to lead.....

You can follow our journey on our other blog, "Carson's Essentials".  Essentials is named after the 9 'essentials' or pillars of the ABM Method.

Enthusiasm as a Skill

Grumpy man on his 2nd B-day

For 13 weeks now, Carson has been battling with sinus congestion that has left his energy depleted and him crabby.  Thankfully this last week, we've seen some small breakthroughs and really hope we are on our way to recovery.

His energy really perked up yesterday!  Carson had a good day!  Carson's only independent mobility so far, is while on his back on the floor, he kicks and rocks to his side so much that he turns himself in circles.  He might not 'go anywhere' but he just loves to move himself and it is hilarious to watch.  He had a renewed sense of energy yesterday and his circles were even more exaggerated.  It was great to watch.

Loves playing on the ground!

THEN, he chose to surprise me and our PT, Lori, with rolling over to his tummy!!!!  We have not witnessed him completely-independently rolling in forever!!!!!  I had to contain my scream of excitement as to not startle him  :)

On top of that, Carson was extremely verbal yesterday!  Even daddy was commenting all night on his talking.  Even twice during dinner, I would say "mmm mmm good", and he would repeat with a similar "mmm mmm mmm" version.  It was so wonderful to hear.

>>>>>My point of this post, other than just to brag..................

I have been reading a book called "Kids Beyond Limits" by Anat Baniel.  She is the founder of the Anat Baniel Method.  It is a therapy that is very different from other 'alternative therapies' out there.  We are attending a one-day workshop with Anat soon and then we are going to try out ABM sessions with a local practitioner   

What hit me hard this morning, was reading the '9 Essentials' chapter on Enthusiasm (her work is based on 9 Essentials that she's found with working with those with special needs).  She goes on to say that she isn't just talking about the Enthusiasm that comes naturally from really enjoying something, or being a fan of something... She is talking about "Enthusiasm as a skill that you can develop within yourself, one that you will apply in the service of helping your child overcome his limitations.... Enthusiasm as a skill is your ability and your willingness to acknowledge as important, the smallest of changes in your child, and for you to experience joy, internally celebrating those events or actions..... In that respect, Enthusiasm is not about paying compliments.... nor is it about clapping your hands to applaud something your child has accomplished .. but developing your ability to create and amplify your own internal experience of deep delight and appreciation for your child's tiniest changes and improvements."

This paragraph knocked me in the head and in the heart.... though my response isn't exactly what Anat was trying to convey, never-the-less, my heart was moved.  For many parents of special needs kiddos, it can be an internal struggle to outwardly brag, praise and share, the tiny accomplishments of your child.  Sometimes its due to fear - fear that your child will regress, fear that others with expect those accomplishments to become bigger accomplishments setting unrealistic expectations at that time.  Sometimes there is a sort of 'sadness' in only being able to find joy in the small things, instead of being able to rejoice in the 'typical milestones' of your friends.  Whatever the reason, I know that I struggle, and a few of my SN mommy friends, struggle with sharing and bragging about the "smallest of changes in my child".  

Then I think of God my father.  It is clear to me, that God rejoices, has enthusiasm for his children, even in our tiniest of changes and accomplishments.  The Bible says He delights in us!

So, reading the wise words of Anat of not just outwardly praising Carson, but working on the 'skill' of experiencing deep delight and appreciation for the 'tiniest changes' - and remembering that God delights in me his child, even in the little things.... I want to work on sharing my Enthusiasm!  I find its easier to post prayer request needs on Facebook, with my 'community', then it is to share the small accomplishments in Carson's life.... I am planning to change that.  So be prepared Facebook friends, lots of Enthusiastic sharing about Carson is to follow!!!  :)

His Compassion's are New Every Morning

Tonight I was trying to remember Carson's first week of life...  we spent that time at the NICU at Providence Hospital.  I was admitted to the hospital for a few days following my c-section and then spent the rest of the week in a family sleeping room on the same floor as the NICU.  One day, Kevin and I had a meeting with Carson's neonatologist Dr Knox, a nurse, a social worker and another person whose role I don't recall. During that meeting, we were told that as 'well' as Carson had been doing, because of different problems with his breathing, carbon dioxide levels, and just the amount of brain damage he suffered, they didn't expect him to live long.  They were recommending we go home on hospice care, and just enjoy every minute we had with him.  After that, we met with a wonderful pediatric hospice care provider Judy, and made arrangements to go home.  We stayed in the NICU for a couple more days after that meeting.

It is hard to recall fully all the discussions and decisions Kevin and I had to make after that meeting.  I know at some point we had to discuss whether or not we would call 911, if Carson stopped breathing.  We had to discuss what forms of resuscitation and life-saving efforts we would allow to help save him.  We had to discuss whether to keep morphine in the home for our nurse to administer when Carson would be at a place of just needing pain management.  I had a piece of paper next to my bed, where I had to jot down 'thoughts' and 'wishes' of a funeral for him.

Tonight I recalled a lot of those discussions... it seems like so long ago, and yet feels like just yesterday.  Tonight I sit here watching the baby monitor... watching my son, sound asleep in his bed.  Cannot believe in less than a month, we are going to be celebrating his 2nd birthday!!!  Now, nearly two years later, our discussions have turned from resuscitation and morphine, to preschool, a bigger changing table and what sounds he is going to make next!

Sometimes in life, we are hit hard and have to hold discussions we never thought we'd ever have to... sometimes we have to make tough decisions, without knowing which way life was going to play out.

I think about how God says that He has plans and a purpose for each one of us... yet, we don't know what journeys, trials and hardships that will entail.  Bad things happen in this natural life, in our broken human state and in our sin-filled world... people die, our bodies get sick, people are abused and abandoned, we are betrayed and beat down, we lose, we fall... and sometimes it is hard to know what 'plan and a purpose' God has for us in all of that.

But then God reminds me through my memories of Carson's first week through now - - - that even when things are hazy, confusing, hard, heartbreaking - He will see us through - He will bring us along our journey - He will use all of the 'stuff' as part of our plan and purpose.  I just hope that this blog post will remind me during the hard times - that there can always be a 'two years down the road' in the situation... that what seems unbearable and earth shattering in the moment, that God will someday bring me to a place of looking back and remembering that His compassion's are new every morning!  Great is His faithfulness!

God's loyal love couldn't have run out, 
     his merciful love couldn't have dried up.
They're created new every morning. 
     How great your faithfulness!
I'm sticking with God (I say it over and over). 
     He's all I've got left.
~Lamentations 3:22-24 MSG~

Savoring the Moment

What is it that causes us to 'pause' in the midst of something potentially exciting?  Is it past experiences of disappointment that stop us from savoring the moment?  Is it the fear of heart break?  Is it concern for other's reactions?

Carson sitting up unassisted!

Today I met with Carson's speech therapist Julie.  During our last two appointments, she has been pointing out to me, all the ways she sees Carson 'talking'... duplicating noises, copying our inflection in our words.  Today, she even said to me - he is not non-verbal, he is pre-verbal.


I should have rejoiced in that moment... allowed my heart to soar in hearing our therapist say those words; having hope that Carson is on a journey to speaking.


But instead, I was hesitant.  Are the things she is seeing just a 'fluke'?  Will he continue to grow in his speech?  Is this really the beginning stages of him speaking?


I think today I was saddened by my own response.  I realize that there have been so many ups followed by downs, expectations and hopes dashed, progression then backsliding... that I wasn't able to savor that moment; and that saddened my heart.


As I was thinking about my reaction, the Lord brought my friend Tiffany to mind.  Recently, she experienced the most amazing thing - she saw the very strong heartbeat of her very healthy 12-week baby, growing in her womb.  After the tragic loss of many babies before this one, this first trimester has been very hard for her.... she has gone through many 'hesitations', many times that she hasn't been able to 'savor the moment', all because past experience has shown her that this dream that she is holding in her hands, could pass away.  But now, after seeing and hearing this baby's heartbeat, she can now rejoice in the fact that she is going to be holding her baby in about 6 months!  GOD IS GOOD!

Swinging in a toddler swing
for the first time!

Here I am today - realizing I am living in the moment of fear, of uncertainty... wondering what our 'ultrasound of life' will hold.  I'm making a decision (at least for today), to SAVOR the words of our amazing therapist - that Carson is 'pre-verbal'... that Carson is showing us that he is on his way to speaking words... to have hopes that one day, Carson will deliberately call me mama, to say he loves me, to tell me his needs, to tell me what brings him joy, for him to one day tell me that he has given his life to Jesus. 


Are you holding back from savoring this moment in life, because your past experience leads you to fear?

From Death to Hope

During the last trimester of my pregnancy, facing the reality that Carson was not expected to live long after birth, God brought to me some amazing music... some that brought me to my knees... some that gave me hope... some that helped me grieve.  God truly spoke to me through music.  I created a CD of those special songs and that CD played in the operating room during my c-section.  As I laid on the operating table, I just soaked in the music that God has blessed me with.  Thankfully Carson came out kicking, screaming and breathing - and has been growing and thriving these last 18 months.  That CD has remained very important to me.

Today God opened my eyes up to something marvelous... today I was packing mine and Carson's suitcases for our month-long trip to Ohio, to receive therapy at Sara's Garden.  As I was packing, I played my "Carson CD" and sang my heart out as I was packing.  I was stopped in my tracks as I realized I was playing the same music that I had been using to prepare my heart for Carson's potential death, and now I was listening to the music while preparing for a trip of HOPE.  

What a great reminder today of God's goodness - His provision - His blessing - His hope.

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For those of you that would like to partake in the musical goodness of Carson's CD, below are the songs!

• 'Healer' by Kari Jobe
• 'Attention' by Know Hope Collective
• 'Beautiful' by Kari Jobe
• 'Restless' by Audrey Assad
• 'You Are For Me' by Kari Jobe
• 'Be Still' by Kari Jobe
• 'You Deliver Me' by Selah
• 'Revelation Song' by Kari Jobe
• 'I Know You're There' by Casting Crowns
• 'My Beloved' by Kari Jobe

When the Answer is the Problem

Carson had a VP shunt put in right before he turned 3 months old, two days after Christmas, to help 'treat' his congenital hydrocephalus.  We have gone through so many ups and downs in regards to his shunt over these last 13 months... swelling around his valve because of the shunt placement, increased pressure in his brain and rapid head growth due to a shunt setting being to low, over-drainage of his ventricles causing the brain to pull away from the skull and causing bleeding around his brain.  Its been non-stop.  I think it would be impossible to count the number of MRI's Carson has had.  Carson has been exposed to so much radiation through CT scans and X-rays.... more radiation then I have ever had in my lifetime.


Every time we ride this roller coaster, we begin to feel that maybe surgery should be done to revise (replace) his shunt so that we don't battle with the ups and downs... the constant need to prepare ourselves, our schedules, our family life, our work schedules for surgery, just to have doctors change their minds... to constantly be wondering when Carson is cranky if it could be pressure building in his brain... to be constantly measuring his head for abnormal head growth.... to have to wonder how many surgeries he'll have in his lifetime because of his hydrocephalus.

So we desire surgery just to get an "answer" to the problem we are facing.  The issue is that a new shunt does not make the real problem, the hydrocephalus, go away.  With a new shunt and another surgery, we run the high risk of post-surgery infection, having the new shunt malfunction, over-drainage, increased pressure... a new shunt doesn't remove the risk, doesn't remove the worry, doesn't remove the issue....


The "answer" can quickly turn into just another "problem".....

Carson (few hours old)

So where do we go from here?  What do we do? How do we handle the constant ups and down?  I don't have those answers.


So what do I know?  I know is that God is good.  God loves my son.  God loves me and my family.  God has a plan and a purpose.  So....... as much as I want an "answer", right now I'll just have to continue to remind myself to fix my eyes on Him... the only true Answer to this crazy, overwhelming, discouraging, constantly scary situation.  Lord, when we are looking for an 'answer' to the roller coaster we ride, help us to look to you!


Are you looking for an answer in your life that might very well just be a potential problem?

"Faint-heart, what got into you?"

I barely slept last night.  The last two days, my eyes have been poofy, welling up with tears while I fight to hold it in.  I've felt beaten, overwhelmed, and very alone...

We received more diagnoses about Carson this week.  We found that he has scoliosis (curving of the spine) and a hip deformity that is common with cerebral palsy, and can lead to hip dysplasia (hip slipping out of the socket).  Both are "mild" at this point so we are not being referred to a Orthopedic specialist yet... yet... yet, not the most encouraging word sometimes.  There is nothing that can be done to fix what has occurred in his body... and nothing that can be done to "stop" it at this point... we are in yet another 'watch and wait' mode.  My heart and mind could not take in and process this new information well this week.  On top of this new information - we are struggling with making some major changes to his physical therapy program and are having to work through some other major issues which are difficult in themselves.

Its funny (figuratively speaking) how after a major 'valley' in my walk as a special needs mommy, I sometimes feel my faith so strong, that I am like Peter who says, "call me to come to you on the water."  I boldly step out of the boat, and walk towards the the Lord, even on top of rocky and crashing waves.  Then other times, such as this week, I find myself being distracted by the crashing waves, the darkness, the wind, the cold water - and I begin to sink and drown.  I struggle for awhile, going under the water, being crushed and tossed around by the waves and finally I see a small, blurry image of the Lord, standing on top of the water.  I finally say, with water spewing from my mouth, "Master, save me!"

And what does He do?  He doesn't hesitate. He reaches down and grabs my hand. Then He says, "Faint-heart, what got into you?"

Matthew 14:28-33 seems to be a picture of me... bold, courageous, then scared, overwhelmed and faint-hearted, leading to my crying out and being saved once again by my Protector.

What stands out to me when reading this passage is that God saves me, oh wait, Peter, by reaching out and pulling him up... he DOESN'T save him by stopping the storm and calming the waves (that doesn't happen until they are safely back in the boat).  So this week as I cry out, I realize that God pulls me out of the waves and the freezing waters, He doesn't stop the storm.  Jesus, thank you for not hesitating.  And thank you for the constant reminder of asking "Faint-heart, what got into you?"

Are you faint-hearted?  Do you need to call out to Him to save you without hesitation?

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Meanwhile, the boat was far out to sea when the wind came up against them and they were battered by the waves. At about four o'clock in the morning, Jesus came toward them walking on the water. They were scared out of their wits. "A ghost!" they said, crying out in terror.

But Jesus was quick to comfort them. "Courage, it's me. Don't be afraid."

Peter, suddenly bold, said, "Master, if it's really you, call me to come to you on the water."

He said, "Come ahead."

Jumping out of the boat, Peter walked on the water to Jesus. But when he looked down at the waves churning beneath his feet, he lost his nerve and started to sink. He cried, "Master, save me!"

Jesus didn't hesitate. He reached down and grabbed his hand. Then he said, "Faint-heart, what got into you?"

The two of them climbed into the boat, and the wind died down. The disciples in the boat, having watched the whole thing, worshiped Jesus, saying, "This is it! You are God's Son for sure!"

"Here is a baby with eyes of blue, straight from heaven, right to you." ~ Mr. Stork

I've been watching a lot of cartoon movies over the last 2 1/2 years..... one of the perks of having a toddler!

Recently I've watched two movies from the 40's and 60's that deal with a child that is different.... Rudolph the Red Nosed Reindeer (Adrianna's current favorite) and Dumbo both depict a sweet, innocent child that is "different".  Its been strange what emotions have brewed up from watching these movies.  A few specific things have stuck out in my mind....


#1. The children do not know that they are different, until the "adults" in their lives make them feel different.


#2. The parents go through extreme measures to protect their child from the cruelties of this world.  (Sadly in Rudolph, his father actually feeds the cruel measures a bit).


#3. In the end, these children show how truly amazing they are!!!

Its funny how I've watched both of these movies in the past but never truly "felt" anything while watching them... yes, we all feel bad for Dumbo; we all feel a bit sad for Rudolph... but it wasn't until having my precious boy who is "different" that I truly had a heart and an understanding for Dumbo, for Rudolph, and their families.  Its funny how a movie - even ones made out of clay and paint - and produced decades ago - can impact me today.


When I watch the endings of these two movies, and see Dumbo fly high in the sky and show himself to be a true entertainer - and to see Rudolph hitched to Santa's sleigh and lead Santa and the others reindeer - I am excited and hopeful to see what Carson is going to do - to see how God is going to use his "differences" to make a HUGE SPLASH!  Awesome!


And thank you Mr. Stork for saying it so eloquently... "Here is a baby with eyes of blue, straight from heaven, right to you."

Flat Road, Peaks, Valleys and all...

Peaks, valleys, and flat road... we walk them and we live them.  But what about when we seem to walk flat roads and peaks that seem to sit inside a valley?

Recently, well over the last 15 months of my life, it has felt like I've been living in a giant valley... one that has small peaks, flat portions, but are all in a giant valley.

As you may know, all the swelling issues we've had with Carson's shunt seem now resolved (hallelujah!).  AND his infantile spasms have not come back (hallelujah, hallelujah!).  Two very hard issues we were struggling through and now they are both "resolved".  What a relief!  What a blessing!  Two awesome peaks!!!!

A friend asked me, "now do you feel like you can breath?".  I told her yes, but the truth is no.  It seems like when we think things are evening out, that our path may actually be a "flat road", we find ourselves still in the valley... that those flat roads of "normalcy" are just flat roads inside the valley.

Right now we are facing a new challenge, a new low valley point... Carson's head shape is very long, narrow and crooked (many reasons that have contributed to it) but a few months ago, we learned a new big and scary word - Craniosynostosis.  What is Craniosynostosis (other than a word that is very hard to pronounce)? In an infant, the skull is not a solid piece of bone, but several boney plates separated by fibrous sutures. These sutures allow the skull to expand as the brain grows, and will eventually fuse to form a solid skull. Craniosynostosis is a condition in which one or more of these sutures fuse prematurely, causing restricted skull and brain growth.  Carson's particular craniosynostosis is of the sagittal suture.  It is the bone line/suture that runs from the front of the head, to the back.

The most common treatment is surgery performed by a neurosurgeon and craniofacial surgeon. There are three goals in surgery; open up the fused sutures to allow room for normal skull and brain growth, relieve any pressure that may be on the brain, and give the head a more normal appearance.

Because of Carson's VP shunt for his hydrocephalus, the surgeons did not feel Carson's protruding forehead was "bad enough" to warranty surgery (the hydrocephalus causes added surgical concerns).  So we decided to just watch and wait.

Over the last month, we have noted noticeable changes to his head shape, cheek, forehead and ear placement.  We have an appointment with both Neurosurgery and Craniofacial in October.  I am very eager for this appointment!

I am really struggling with this... I feel very low in a valley...

I keep asking myself WHY does this issue feel different then all the others that we've gone through.  I have come to this conclusion: because it's External.  I realize that all of Carson's other issues are internal - inside his brain and body... inside places that we cannot see without fancy EEG machines, MRIs, and CTs.   My sweet husband keeps reminding me that no matter how overwhelmed, sad or antsy I feel - nothing it going to change the situation right now.  He is encouraging me to just breath and release - and then meet with the Doctors in a few weeks and go from there.

So...... in the valley I seem to remain.

But, even in the valley, I also feel like I'm on a huge peak!  Probably the largest peak in this valley... Carson is turning 1 YEAR OLD in 8 days!!!  I cannot believe it!  Where did a year go?  How has it only been a year?  How amazing and awesome is my son?!?!

Wow.  So for now, I am going to enjoy this peak amongst the valley... and praying that someday I'll see the flat road and the peaks outside the valley again.  God is faithful.  God is constant. God seems to continually hold my hand, flat road, peaks, valleys and all.

I look up to the mountains; does my strength come from mountains? No, my strength comes from God, who made heaven, and earth, and mountains.

Psalm 121:1-2

As I sink in despair, my spirit ebbing away, you know how I'm feeling.  Know the danger I'm in, the traps hidden in my path. Look right, look left— there's not a soul who cares what happens!  I'm up against it, with no exit— bereft, left alone. I cry out, God, call out:  'You're my last chance, my only hope for life!' Oh listen, please listen;  I've never been this low. Rescue me from those who are hunting me down; I'm no match for them. Get me out of this dungeon so I can thank you in public. Your people will form a circle around me and you'll bring me showers of blessing!"

Psalm 142:5-7

Who Needs More Strength?

Today I had to ask myself... does Carson need more strength, or do I? 

Carson's physical therapy can be a struggle for me....

Some exercises we do are "simple"... Carson sitting in his bumbo and playing in his exersaucer strengthen his back and neck; sitting on my legs with little holding helps with his strength and his balance; stretching out his left hand that stays fisted. 

Then other exercises, I struggle with.  Right now, some of the things we are concentrating on, is getting him use to bearing weight into his legs (as he does not do that on his own at all) and getting him used to the feeling of crawling and bearing weight into his knees and arms.  Both of these take a lot of strength and perseverance from dear ol' mom.

Carson during tummy time

Today's "work out" was extremely hard for me.... physically and emotionally.  Carson is getting a lot more comfortable working on standing (he leans onto the couch and I keep his knees locked and hips aligned).  But it takes a lot of back strength and arm strength from me to keep him in proper position and because I'm sitting on my knees, trying not to let my legs go to sleep... all the while making sure he is aligned, comfortable and working.  

Carson's first time in front of cart...

Then I decided to have us work on crawling... try having only two arms and doing the following.... supporting his body from underneath him, keeping both his legs under him, locking both elbows on each of his arms to get him to bear weight into them - all the while keeping yourself from falling over.  AND THEN ADD a screaming, very upset baby to the mix.  Once we were done with the "torture" and I picked him up for a cuddle and rest time, I began to sob... all I could say was "Carson, I am so sorry".  I am so sorry that because of injuries to your brain, "simple" things that other babies can do, are such a struggle for him... that the "step" of sitting up, pushing up onto arms while on the tummy, holding head upright for a long period of time while sitting, sitting in the front of a shopping cart, crawling, rolling over, even using his vision for longer periods of time......... all of it is so challenging for him... exhausting.

And how challenging and exhausting is it for me, trying to push him to do these things...... and yet that's my job.... no one else is going to do it..... because of his visual impairment, he is not motivated by sight the way all other babies are.... so what motivates him?  It's my persistence, perseverance, motivation and cheering.... some days like today, I wonder if I have it in me to be that cheerleader, coach and trainer.

So especially after today's session, I had to ask myself.... is it Carson or I that need more strength?  Lord, help us both!

Our "Christian Optimism"

I can't fall asleep tonight... my mind is racing and my heart is aching for some friend's that are suffering through a miscarriage right now.

My mind is racing about how people, *especially* Christians, always seem to have "words of wisdom" to speak during times of hardship, crisis and grief.  Christians are so good, so programmed, to spew their Christianese during the hard times.  I have so many things I want to say to this family, about this horrible situation... so many "Christianly optimistic" things I can say... so many "its in God's hands", "God has a plan", and "there's a reason" phrases I can speak.  But when someone is in the middle of grief, do those phrases really help?  Do those phrases truly give Glory to God when used during those times?  I don't believe they do.

I continually struggle with this idea of "Christian optimism" as I'll call it.... when we always have the upbeat thing to say during times that are low, hard, overwhelming and dark.  Part of me says, "well, we are suppose to give Glory and thanks to God in ALL situations... so if someone is struggling, its our Christian duty to keep things pointed towards the Lord."  The other part of me says that "yes, as Christians, we are called to uplift, encourage, support and love on each other, but trying to be "Christianly optimistic" when someone really just needs an ear to listen to them, or a shoulder to cry on, or just someone to take up their sadness for a bit, trying to "point others to the Lord" through our Christianese, is more about making ourselves feel good, then truly helping the other person".  And that is wrong!   That is not what Jesus did and that is not what we are suppose to do.

Recently someone was telling me about the horrible physical ailments that their friend was suffering with.  They went on and on about all the physical issues and then just "tied it up" with a quick "but God has a plan".  What the hay???  Yes, to God be the Glory that He can and will take all things and use them for His good and His glory... but isn't there a time just to say "man, that sucks"; "that is so hard", "I'm just so sorry" or just to say nothing at all (what a riveting concept for most us Christians).

So.... where is all this leading?  I don't know.  I just know that I am sick and tired of my own, and others, Christianese "word vomit" during hard times.  Can't we just hug our friends, say we are sorry, and pray?  Can we actually stay quiet and just let the person know we love them?  I know that I am just as guilty as my eye-planked sisters and brothers in this area.  I just hope that my personal awareness of this, particularly with everything we've gone through and continue to go through with Carson, will help me be more aware of my need to speak my "Christian optimism" during times when I don't know what to say, and help me to be more silent and prayerful.

Lord - help me.  The one that you love is sick (in my need to spew words), and needs Your help!

Thinking Outside the Light-Box

Today a friend of mine and myself, started a Facebook Page called "Thinking Outside the Light-Box: Vision Therapy Support Group".  Its a page for parents that do Vision Therapy for a child with CVI.  A place where parents can share toy ideas, visual aid and therapy ideas, and ask questions in a place with other parents that "get it".  

If you know anyone that could benefit from this support, please have them look us up on Facebook!!!

Sticks and stones........

Tonight my feelings were hurt.  An old high school acquaintance who I've remained in contact with via Facebook, posted a very insensitive comment on something I posted.

Not only were my feelings hurt, but it just made the realization of future pain, more palpable.  It made me realize that people in our lives - our circle of influence and loved ones - are going to accept Carson for who he is.  They are going to see Carson for everything he is, not just any disabilities or differences he may have.  And yet outside of the security of that circle, there are people who are going to be judging and possibly cruel.  There are going to be people who may call him names, talk down to him, treat him wrongly.  I know that with any child, hurt is going to come.  Pain, sadness and hurt are all apart of this sinful world.  But tonight my heart is heavy for the hurt and pain that will mostly likely come to Carson, because of people's glances, comments, and words used.

I want to wrap my arms around my precious boy and block out the insensitivity, the foolish talk of others. Tonight I am in tears... and just a little angry.  I am going to take some time to give my hurt, my worries, my anger and my tears over to My Father, My Provider and Savior.  Lord, show me how to lovingly protect my son.  Show me how to comfort him when he is sad and hurt.  Show me how to encourage others around me, to be more sensitive and thoughtful.... teach me to be more sensitive and thoughtful.

Welcome to Holland

Today I was talking to my mom about a new friend I have. She has a daughter with brain damage and all that comes along with that.  She has been such an encouragement for me.  It has been so wonderful to have a friend in my life that understands the complexity of a life with a special needs child.  

Yet even with that understanding, I've come to realize that we can never fully understand each other's journey.  We are different people.... with different emotions, different personalities, different families and the ways we were raised.... different priorities, different interests, different minds.  Her child's needs and Carson's needs are not exactly the same.  Our children see a lot of the same therapy departments through early intervention and see some of the same specialists at Children's, but our journeys are not identical.  

We can understand each other and the journeys of being a mom to an extra special kiddo - yet cannot fully understand each others paths.  So how much harder is it, when asked by someone who has never been there, what it is like to have a special needs child........ its hard.  How do you put it all into words???

I've shared this essay on Facebook before... my mind comes back to it often.  I wanted to share it on here as well.  It is an essay written by Emily Perl Kingsley in 1987.  It is titled "Welcome to Holland".  It is the closest thing in my mind, to summarizing what its like to have a special needs child.  I hope you enjoy it.

WELCOME TO HOLLAND

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. 

Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. 

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. 

It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. 

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Guilty for Feeling Burnt Out?

Yesterday I felt very burnt out.  We had a great weekend celebrating Adrianna's 2nd birthday, but by yesterday, I just had enough.  I felt like a bad mom.  Until the evening came around, I did very little therapy play with Carson and didn't play much with Adrianna.   I had a hard time just picking up around the house.  Felt like I was just coping throughout the day.  I felt numb and emotional at the same time.  I had plans to run errands when Kevin got home, but that didn't happen either.

I felt like I needed a separation.  I needed some alone time... even if I was spending my alone time running errands for my home and family, I just needed a break.  Unfortunately last night didn't allow for it.

On top of feeling that need for a break - I felt GUILTY!  I felt guilty for needing a break.  I was almost fearful to speak the word "break" out loud... that it meant I was a bad mother; that it would be taken as I didn't love my children, or didn't love being at home and caring for the family.

I am still struggling with that today - but I did come across a blog post that I follow, that was encouraging to me!  Not sure my internal struggle has ended, but it was just wonderful to hear another mom say it "out loud".  Wanted to share it with you as well!  

Feeling a Little Guilty?

by Emily Coleman on 4/14/2011 11:31:34 AM

Do you like to read? Do you have a favorite hobby? A favorite TV show? Do you like to have a “date night” with your significant other, or a “girls night out” with all your best friends? Every time you indulge in your favorite activity do you happen to feel a little guilty? More than a little guilt? Well, if you answered yes, I can relate.

I think all parents feel some guilt when they do something for themselves and step out of the parenting role. This can be intensified when you have a child with a visual impairment. I spend a lot of time teaching Eddie and simply being his mom and I often think about the goals yet to be accomplished and how much teaching and parenting sits ahead of us. Really thinking about that “to-do” list could surely trigger a full-out panic attack.

There is one way that I avoid these melt-downs. I do something for me. I admit it openly and honestly. I have a few hobbies that I cherish, especially quilting. I love to read for leisure…that’s right…leisure. This means ignoring my dozens of books about parenting, self-help, or tactics for special-needs children. I set that pile aside and break out my latest “book club” read. Yes, I am in a book club, a quilting group, and occasionally enjoy an evening with my friends.

These activities do take up some of my time that could be devoted to my children, but honestly I think that is OK. My aunt, and close confident, once told me openly that her love of quilting also took away time from her children when they were young. She also said, “I was a better mom because of it.” I completely agree with her.

There are days when I am up to my ears in diapers, therapy goals, phone calls, doctor appointments, teacher conferences, etc. and I feel myself becoming overwhelmed. When all I want to do is either cry or take a nap, I know it is crucial to have some “me time”. Anxiety and stress is not easily hidden from children and as I’m sure most of us know, they pick up on it fast. Pretty soon all our emotions are escalating and nobody is happy.

In the interest of my children, I will stop feeling a little guilty. I will enjoy my favorite things and know that one day I can share those hobbies with my kids. I will keep my own identity for myself, for my children, and even my husband. Frankly, sometimes he’s begging me to go to my sewing room. He also understands that to be a good parent, sometimes we have to step back and do something for ourselves.

My beautiful bobbly eyed boy.

Tonight I was exhausted after grocery shopping.... not because of the shopping, but emotionally.

Yesterday we attended my nephew's 11th birthday party.  When we were leaving, one of the kids saw Carson's eyes moving all over (Carson has Nystagmus which is just involuntary eye movement) and said "look at his eyes, how weird" or something to that affect.  I did not hear it or witness it; I was just told about it by a few family members that witnessed it.

I thought about if I had been there, I could have used that time to just explain to the boy that Carson is blind and his eye muscles aren't very strong yet so they bobble around when he is trying to see.  No big deal.  I have had plenty of people ask me why Carson's eyes bobble the way they do.  I actually enjoy the questions and love to be able to talk about our little man.... both as a way to brag about him, but also just to make people aware.

Tonight at Winco, a nice older man came over and asked how old Carson was.  After talking for a couple minutes, Carson's visual impairment and brain injuries came up.  He asked some questions, responded nicely and we went our separate ways.

Later as we were checking out, the very nice checker kept commenting on how he was fighting sleep (he was opening and shutting his eyes trying to doze off).  While his eyes were open, his eyes were really bobbling.  The lady kept trying to make the fighting off sleep comments and scanning our groceries.  She also kept looking at him out of the corner of her eyes.... wanting to see what his eyes were doing but probably feeling too embarrassed to say anything.  I saw her discomfort and her wondering but I said nothing.  Typically I will make a comment that he's blind but tonight, I was just too tired.......

Too tired to go into it, too tired to explain.... and then I was just plain tired that I even have to explain anything sometimes...

Tonight I'm tired....  tomorrow I'm sure I'll be better and feeling positive about answering any and all questions, or dealing with inquisitive or strange glares from people.  But for tonight, I'd like to feel a little self-pity, so thanks for reading  :0)

Thankfully, Carson loves to snuggle!!!  There isn't a place he enjoys more, than resting his head and body on my chest.  After an emotional grocery shopping experience, at least I got to end my day cuddling with my beautiful-bobbly-blue-eyed boy!   :0)

Grieving

Recently, I've had quite a few conversations with different people - on the exact same subject... Grieving.

Now that word has not been the exact word used during these conversations, but thinking back to each conversation, grief was basically what it boiled down to.  Grief is usually associated with the sorrow and emotions of losing a loved one.  But grief can be caused by any loss - loss of a job, loss of a friendship, loss of a dream...

Life with Carson (ie: borage of appointments, worries about his shunt and brain pressure, working with therapists, researching about his disabilities, seeking our resources, etc., etc., etc.) is just the norm.  I don't spend each day focusing his "delays" or constantly worrying about what areas he's behind in or what his future will look like.  Carson is Carson.... loving, cuddly, funny, quirky, sweet.  We spend our days playing with his mirrors and beads, working on tummy time (kinda), mommy giving zerberts, holding him on my chest to put him to sleep, breastfeeding, being slobbered and spit up on, receiving slobbery kisses, changing a bazillion poopy diapers.  Life is life.  Life with Carson, and all that goes along with his needs, is just the norm around our house now.

Yet moments and emotions come from time to time, where the realization of Carson's development delays and issues, kinda hit me out of nowhere... and they hit me hard.  I'll see a video that someone has posted of their child around the same age, laughing and cooing.  I see pictures of babies smiling and making eye contact with the camera.  Seeing kiddos hold up their body strength (assisted of course) on their legs.  Babies that want to face forward.  And sometimes those moments make me realize the reality of where Carson is at... the delays that he has... the unknowns of the future. And at those times, I grieve for what I wanted for Carson; what I wanted for our family.  The dreams that I had.

Thankfully those moments are far and few between.

Just this week, I came across a wonderful blog, written by a mom with a special needs son (one of his disabilities is blindness, which is what brought me to her blog).  I was reading through past entries she made, and one really struck home in regards to what I've been discussing with many recently - grief.  Hope you enjoy it!  Thank you Emily Coleman, for sharing your heart!

Raising a Child Who is Blind and...

"Grieving" By Emily Coleman

As I work my way through school to become a teacher of the visually impaired, which I'm doing now, I keep running into information about "grieving." Most often we think of grieving as the actual death of someone, but we can actually grieve a great many things. Through brainstorming at school, different types of grief were mentioned including grieving a lost job, lost marriage, lost friendship, and even lost dreams.

As a parent of Eddie, that last one "lost dreams" is something that I have to realize and work through on occasion. When we were pregnant with Eddie we had a lot of hopes and dreams for our son and envisioned a future that we didn't know would not come. At least, not exactly as we dreamed. This hasn't been a grieving process that I went through once and now I'm healed. Many times I am thrown back into the realization that our life with Eddie is not "typical." That doesn't mean it is worse, but that it is much different.

Large milestones that are missed tend to bring about the hardest times for me. I grieved when he was 1 1/2 and still not walking, I grieved when he turned 3 and still didn't talk, and most recently I grieved when school started this year and he didn't go to kindergarten with all the other 5 year olds. Children who I watched stretch their Mom's tummy's while Eddie stretched mine walked into that school and I witnessed it because I was taking my 1st grader to school. This was extremely hard and still brings tears at the memory. A prime example of grieving the future that never came, even when I thought that was behind me.

As a note to parents like me, these days are few and far between. I don't always miss those "lost dreams" but now have found new dreams for Eddie. So much focus is placed on bigger milestones for typically developing children, but the small steps are important, too. Many times celebrating the successes of small steps is what keeps us moving forward instead of "grieving" the larger ones.

Thank you Emily!