Thursday, February 24, 2011

Glasses for Mr. Mr.

Since Walker was about four months old, we noticed that his vision  wasn't quite right. In fact, this is what alerted us to something wasn't developing correctly.  He was unable to track and really look into faces.  At first, I was hoping that he was just blind.  I know that sounds strange, but my gut told me there was more to it, but being blind would be the lesser of two evils.  A person can function quite "normally" in our world being blind.  The other was unknown.  So off we took him to an ophthalmologist. (Do you know the difference? click here.) But since he was so young and uncooperative, it was hard to diagnose him with anything in particular, besides, low vision.  She sent us for an MRI, which showed no major issues, she sent us for another test that put a contact lens and wires to a computer to make sure that there were not issues with the retina. Everything continued to come back normal.  The only diagnosis was strabismus, which to us common folk, is  a wandering eye.  So we were told to patch him and contact the National Blind Institute.

We continued to take her to him, while receiving vision services. My frustration was that since he couldn't tell us what he could or could not see, how can we be sure everything was "normal"?

Around Christmas time, we went to see old family friends, who also have a child with special needs.Through our conversations about our amazing children, I learned that they had recently taken their daughter to a low vision specialist. I had no idea this type of doctor existed! So we went home with a phone number and a lot of questions.

Tuesday we got into see Dr. Siwoff,(click here for his website) The initial exam took about two hours, he preformed the normal tests and concluded that the actually function of his eyes was fine.  The question then becomes where is the information being lost? This is his speciality.

After putting some electric wires to Walker's head, similar to an EEG, he then patched one eye and showed Walker a series of video pictures.  Simultaneously, he recorded the brain activity in coordination to the images.  Then he put on glasses with a prism lens and repeated the tests.  He did this for each eye. Right away it was obvious that Walker was attending more to the video with the glasses on.

The determination is that Walker is not receiving image information from the right side of his head.  The electric impulses showed less stimulation to the brain on that side, but did increase with the use of the glasses. The technology is new and is considered out of the box, but I clearly saw a difference in not only the computer print out, but in Walker's reaction.

Vision has a huge impact on ones development. I feel that anything we can do to help Walker see the world, and place himself in it is worth it! In eight weeks, we will get to try out the new glasses and see if that helps him!  I am very excited!!

Saturday, February 19, 2011

Swing time

Mr. Mr. comes with a lot of stuff.  He has special chairs, special bath seats, AFO's for his feet, standers to get him upright, elbow splints, a compression vest, a weighted blanket, curved spoons, textured puzzles and much much more.  Most of the stuff is to assist us with his daily living needs, some is for teaching him certain skills and then others is for sensory stimulation. 

As able people we take certain things for granted.  The sensory stimulation of walking or crawling through our skin, bones and joints that Walker doesn't get. I try to give him multiple experiences every day that mimic what us able people take for granted.

Hence the swing that now hangs in my living room.

He loves it!
But of course so do his older brothers and sisters. 

Which ended up with this outcome

Which now gives her even more reason to hang out in it, since she can't do much of anything else!
So we put up another one!
Now I can push my two babies at the same time!
And everyone is happy!

Sunday, February 13, 2011

I want more!!

This morning I had a taste of what its like to have Mr. Mr. communicate his needs!  We were both very excited.  As I was feeding him his oatmeal I realized that he was signing more each time!  This was so AWESOME!  Sure his sign wasn't perfect, but I knew that when I repeated it and then feed him he was so happy.  He had a smile on his face ear to ear.  I can't imagine what it must feel like to finally be able to communicate what you want!  All I know if that I want MORE!!

Wednesday, February 9, 2011

its not always about you!

I'm not really sure where to begin this post except from here maybe....

ITS NOT ALWAYS ABOUT YOU! This is something that I love to reiterate to people who I think become so self involved that they can't even tie their own shoes, but today, this is to remind me to live by my own words.

A few weeks ago, i blogged about a really rough night that i had had with all of my children, and was then seriously put off that not one person responded to me, either publicly or privately.  My email box was empty, not one phone call. So I was MAD! In fact, down right ANGRY

I wanted to post blogs about bubble gum and lolipops and then tell everyone where to put them! But I waited it out, knowing full well that my emotions were flailing around and needed to be tamed.

Yesterday as a good friend of mine and I were conversing about my emotions from that post and she gave me a perspective that I hadn't quite considered.  Maybe it really wasn't about me, maybe the general lack of outward pouring was more about people not knowing what to really say or really do. It really hit me, that in my anger infused reaction, I had become my own self involved person. 

Sometime in life we have to take a step back and not get involved in another person's emotional journey.  We can be good listeners, and/or good readers and that alone is enough.  I'm guilty of it myself, there are often people in my life that I love and care about but cannot dive into their own journey because I just don't have the emotional energy to give them.  I feel bad about it, but in the long run its healthier for me. 

So then what do i want to accomplish from blogging about all this? I guess to apologize to anyone who may or may not read my blogs,to anyone who may or may not have felt a sharp pain in their hind side and most importantly to those poor lollipops. 

Monday, February 7, 2011

Feeding time

As parents one of our many jobs is to promote independence in our children.  We want our children to one day be out in the world, independent and productive members of society.  When you have a child with special needs this takes on new meaning.  With Walker it is easy to forget that he is a three year old.  Its easier most days to do much of his daily care myself. Feeding him, wiping his face, changing him etc. Its hard to not want to coddle such a little love bug.  And trust me, he soaks it up!!   But he is a three year old!  And some days it comes shinning through that he wants and desires to be more independent!   And even though it may take a little more time and effort on my part, it is definitely worth it!

He had a grip on that bowl!!

still needs to work on the fine motor skills of getting it in his mouth!

It can be a little messy too!

Wednesday, February 2, 2011

Change of plans

Snow days, snow days!!  We have certainly had our share in the last three weeks.  The time home has reminded me is that Mr. Mr. has to be worked with on a consistent basis.  It also showed me that with him being in preschool, I feel very removed from the goals that he works on with his therapists.  Going from early intervention, where the therapists work with you at your home, to the preschool enviornment where the therapists work with him at school is very different for me.  On normal school days, when he gets home, he is so tired that we don't really do much "work" but being home with him on these snow days, has made me realize that i don't really know what is going on with him at school. Last week I scheduled time for today to go in and spend the day with him at school.  Wedensdays are his busiest days and it would have given me a chance to see each of his therapies and talk with them about some equipment I would like to get for him at home.

Mother nature had other plans.

So instead, I think I will try and convert his stander to a supine position (facing upwards) and see if he likes that better.

This isn't exactly Walker's stander but you get the idea.