Tuesday, November 30, 2010

BCLC series – bilateral coordination

Sorry for the lack of posts in the BCLC series.  I have video and photos to share, just can’t find the time!  Story of my life!

I remember when we introduced Gavin to the peanut roll, or even the exercise ball, he wanted nothing – I mean nothing to do with it.  He didn’t want to hear it, hear about it, or touch it.

Almost 9 months later, he is playing with it.  Yes, it’s been a long haul with this, but the best part is, he is using BOTH his hands to hit the ball.  He has always used one hand, and the other hand was not in sync.  He would alternate, and use the other hand, then the other was not in sync.  We tried everything to get him to use both hands simultaneously.  We are finally getting there! 

Many of his toys encourage two hand manipulation, and we are finally there.  He is starting to use both hands in mid-line, and learning to work with them together.  Bilateral coordination is huge, and in the video you can see him using both his hands simultaneously to “pat the drum (ball)”.  I got it on video!  He refused here and there, but his therapist is so great, she helped to push him through.

Today was also another first.  He walked down a 3 foot ramp, while holding one hand on to the wall, and the other holding his therapists hand.  It took some convincing, and a very scared look on his face (I just wanted to snatch him and hug him).  But I didn’t, I kept the tears in because I knew how scared he was.  His face was terrified, but he didn’t cry – just whimpered.  He was unaware if he was safe, or if he would fall – but encouraging words from his therapists, and mommy, led him down the ramp!

I was so proud of him.  Even more important, he was proud of himself, which is a direct reflection of his self confidence, and him making progress to one day walking tall in this sighted world!

Wednesday, November 24, 2010

Thankful life lessons

I’m thankful Reggie wrote a blog post – so all I have to do is link!  LOL 

Really, I am thankful for what this “fearless foursome” did for us on Oct. 16.  We participate in the Irvine Lake Mud Run, a 5k of obstacles done in the MUD.  Reggie wrote a very compelling, blog post about his experience, and things he learned. 

I am grateful they stepped into Gavin’s world for this mud run.  Two runners ran “blind”, and two guides, guided them.  The entire race!  In mud!  Through obstacles!

You get the picture. 

Now you can read all about it.  Thanks again, Reggie.  You have been a blessing to our family, and I value your friendship and your courage to take these steps with Heather the past mud run.  You can also view more awesome photos here.

I’m most thankful for my children’s laughter and health this Thanksgiving.  Our problems bear no match, to the many children, and families, who are fighting for their health.  I have a new outlook, after our many trips to Children’s Hospital.  My heart aches for those who do not have their children home with them during the holidays.

Happy Thanksgiving! 

Bless you all.

Wednesday, November 17, 2010


Who does not thank for little, will not thank for much. ~ Proverb

I feel like my life has been split into two different lives. 

Before Gavin was born, and after Gavin was born. 

It’s almost like before kids.  Everyone has their “before kids” life, and then of course, when the babies come along, life changes.  As it should.

The same concept holds true for Gavin.  I have, in this blog, written about those feelings, about feeling changed.  I think it is different for me, because Gavin is my second child.  I went through all the first experiences of being a mother, a changed person, with Landon.  When Gavin came along, I felt the same love and amazement that I did when I held my first baby, for the very first time.  I also felt like the “seasoned parent” as I’m sure some of us do, with our second, third or tenth child.  Gavin came into our lives, when we were already parents.  Then the reality hits, that you are not seasoned at anything!

When we found out about Gavin’s diagnosis, we wanted to challenge ourselves, and LCA.  We took on the attitude, that we own Gavin’s blindness.  If we as a family, internally set ourselves with the attitude that we are “ok”, then we will be.  Bottom line.  Yes, we can feel all the emotions that still bring us to tears, but taking ownership of what his diagnosis was, has greatly impacted our outward attitude.  To me, it has helped us with the process of becoming an activist family with LCA.

Before Gavin was born, I thought I understood compassion, kindness and genuineness.  I thought I was compassionate, kind and genuine, and held these values of importance within my own family.

Before Gavin, I thought I was an appreciative, humble person.  I tried to help others, volunteer in various causes – and even give monetarily.  Not much, but I felt as if I was doing my part. 

Before Gavin, I thought I knew what it meant to be a loyal friend, a solid family member, and a dedicated citizen.  I felt like I was there when people needed me, and listened when they needed me, and gave of myself… when they needed me.

Since Gavin has been born, I have learned so much more about kindness and compassion, and it exceeds more than what I thought was possible.  My family is part of the most incredible, truly compassionate individuals and community that I could ask for, and honestly it’s hard to truly take in at times! 

Now, I get it.

I am now fully understanding the power of kindness.  I am now setting my bar higher for what I do for others.  I am changing my personal goals of becoming a better person.

The past few weeks have been overwhelming to say the very least.  When people offer their help and support, I become a sissy!  I should be used to it by now.  But there are so many things happening to support our foundation, and support the cause for helping to find a cure for LCA.  I can barely keep up, we are thinking we need to lease an office for the foundation, I have so many post it notes of “to do’s” it’s unreal.  We are exceeding our pace, by far, in which we set for our goals – and all within a few months.  I am just trying to keep up, I don’t know where to start!  I am staying with my word of not talking much about the foundation here on Gavin’s blog, because we have a website, and you can keep up with our news there!  But I do have to leave with a few things that are going on, and maybe you would like to be a part of.

  • We became the beneficiary of a golf tournament (an extravagant tournament)
  • We became the beneficiary of the Irvine Lake Mud Run for the entire year 2011
  • We will be riding bikes ACROSS THE UNITED STATES in 2012
  • We had 3 concurrent fundraisers this past weekend

… and I will stop with that.  It just goes to show how much people are willing to support a local cause.  There are many fundraising events in the works, that others are doing for us (and that’s just what I know of).  There are a few other “beneficiary” possibilities that may also happen. Now maybe you can see why I could not get through 2 interviews and one speech the past week, without bawling like a baby (I’m glad Troy is stronger, so I can pass the mic to him).  I am very emotional.  This is all for Gavin, and all the other LCA families – and I am deeply touched.

Stay tuned for yet another website for the Tour de Sight in 2012.  We are working on it now, and are also working on our bike route.  We want to raise $100,000, and cannot do it without your help.  Keep posted on Gavin’s Foundation page for all upcoming info.  I will not be sharing too much about it here, but also sign up for our newsletter. I also have media kits I can mail out to you, that includes info about our Tour de Sight 2012.  You can email me at jen(at)gavinsfoundation(dot)(org) to request a media packet.  This would be an incredible marketing opportunity for your business, as we hope to have national coverage (working with NBC), as well as a media company with us to document the whole tour.

Gratitude.  A simple, yet, very meaningful word.  It’s something I am learning more about, through our Gavin’s Groupies.  I am a little loss for words, with what I feel in my heart.  I just know that Gavin’s Groupies are shaping me, and molding me to push harder and work better.  You are incredibly awesome, and I love the family that we have all become.

It is because of you, and your willingness to help Gavin, and the LCA cause, that is going to find us a cure.  I have a heart full of gratitude for Gavin’s Groupies, and I could not ask to be a part of a more dynamic group of people!

October 2010 055

Thank you all, for loving my son!

PS – We will be needing about 600 people at an event next April!  If you have wanted to volunteer, (or volunteer again), we will be needing you :)  Will keep you all posted.

Monday, November 1, 2010

BCLC series – Jumping and proprioception

We talk often about proprioception at Blind Children’s Learning Center.  It is such an important piece to Gavin’s awareness as he gets older.  Proprioception doesn’t come from one specific organ, but rather from the entire nervous system as a whole.   Its input comes from sensory receptors – nerves from inside the body rather that on the surface.  Visually impaired or blind individuals don’t have a good sense of their space perception.  This is very common.  It’s basically understanding their place in space.  This can be difficult without vision.  Proprioception is the sense of the orientation of one’s limbs in space.  Without proprioception, you wouldn’t be able to type at the keyboard and look at the screen – you would have to focus on your fingers to make sure they are doing what you want.  If you happen to be reading while eating, you would have to stop every time you would want to put food in your mouth, to judge the position and orientation of your hands.

The sense of position and movement of the limbs and the sense of muscular tension. The awareness of the orientation of the body in space and the direction, extent, and rate of movement of the limbs depend in part upon information derived from sensory receptors in the joints, tendons, and muscles. Information from these receptors, called proprioceptors, is normally integrated with that arising from vestibular receptors (which signal gravitational acceleration and changes in velocity of movements of the head), as well as from visual, auditory, and tactile receptors. Sensory information from certain proprioceptors, particularly those in muscles and tendons, need not reach consciousness, but can be used by the motor system as feedback to guide postural adjustments and control of well-practiced or semiautomatic movements such as those involved in walking.

As you can tell, there is a lot going on that we don’t even realize!  When you remove a sense, such as vision, spending time in certain areas can be crucial to development, and to reach a certain level of awareness.  Getting Gavin to understand his position in space, is something we work on, constantly.

Gavin loves to jump!  It is satisfying the vestibular stimulation that I often talk about, as well as providing him proprioception awareness.  Of course jumping to a cute little song, makes it even more fun.  You can hear his therapist towards the end talk about the importance of proprioception in relation to his joints.


BCLC series – bucket swing

Gavin has a bucket swing at home.  He is in the swing at least two times a day, it is part of his “therapy”, and allows for him to get the much needed vestibular input that his body craves.  Gavin doesn’t really prefer the swings at the park, no matter how long we have him feel the swing.  We don’t just plop him in anything unfamiliar.  How scary would that be?  Even though minutes of “feeling” the swing, he never takes to them very well.  The same can be said for the same exact bucket swing at Blind Children’s Learning Center.

It has taken us about 6 weeks to get Gavin to actually swing in the bucket swing at BCLC.  Even though he loves his swing at home, it’s the same exact swing, and he is in it for up to an hour a day!  It’s another reminder that even though he may be familiar with something in his own setting, the same cannot be said in unfamiliar territory. On our part it just takes patience, and working through.  Like his therapist said, when he is put in a swing, he has no idea if he is 2 inches off the ground or 20 feet off the ground. 

I was so proud of this moment!  Each week we worked with the swing, just for little portions of time.  Nothing elaborate, but it is all part of the process.  That is what I have learned over the course of Gavin’s life, which is so different from Landon.  I have one son, who is sighted, and one who is totally blind.  It’s two completely different worlds!  Gavin takes a lot of time to get used to something – which I totally understand.  When he finally allowed his therapist to put him in the swing, we were elated!  We went from not even wanting to touch the swing, to touching the swing, to touching the ropes, to moving the swing, to pushing the swing, to singing while pushing the swing (which is a great indication he is enjoying himself) – to swinging in the swing!

Such a small task for us sighted individuals, but it took a lot of work and trust!

After we accomplished the bucket swing, we tried the rectangle swing.  Of course, the same scenario ensued with this swing.  It took him the same time to become comfortable, but I believe the self confidence and knowing he is in a safe setting, and that his therapist would make sure to help him, gave him the courage to sit on the rectangle swing, and GET OFF on his own!  Getting off of the swing, by his own will, was just as important as him mastering swinging in the swing.

I’m so proud of him.