My Family

My Family

Saturday, September 21, 2013

What we've been up to

Wow.  It has been a wild ride these past couple of weeks.  It seems like once Marvin goes back to school things get busier.  You would think with one kid at school and one at home that it would be soaps and bon bons around here.  But that is rarely the case.  First because I don't watch soaps, second because I am never home. 

Cary Lynn and I both caught the urgh these past couple of weeks.  Slightly above the argh.  We started out with sore throats, coughs, fatigue, and congestion.  Both of us are on week two and by all reports it is a three week deal.  So we are just slogging through it. 

Marvin is the only one to avoid it.  Which is good considering the little petri dish probably brought it home to us.  He has had a rough few weeks.  His sweet little kitten got run over on purpose and he has been missing little Tommy.  We all have.  I just can't figure out who gets their jollies over running over small animals.  So we have been giving him lots of extra love and attention.  He is starting to feel a little better and having Tommy's brother, Inky around helps. 

Marvin also went in for several hours of testing.  I spent time filling in the Doctor about my concerns and how I felt for years Marvin has not been getting the support he needs.  I filled out paperwork and the doctor expressed frustration over Marvin never getting preschool screenings.  He told me that he should have been screened years ago.  I was upset because frankly I didn't know my son could get them.  I was told over and over that he was "fine".  So now I feel like we have an amazing amount of groundwork to do.  The tests left me with even greater confusion.  Marvin doesn't recognize certain letters, numbers, and can't stay on task.  He has the fine motor skills of a three year old and the same frustration level.  Yet on some tests he was able to find the smallest details.  Like a missing fillament on a light bulb.  So his teacher got a list of questions to fill out and she sent them in as well.  Now we wait for about a week to get the results compiled.  It looks like we are facing a lot of remedial work, but the good news is that with lots of support Marvin will be able to be successful.  Whew.  That is a heavy burden off of my heart. 

Cary Lynn has also been busy.  We started outbound PT this week.  Early Intevention has been such a crappy experience for us.  I have talked to our support system at VCU and like them or hate them if you will, but they bent over backwards to get Cary the support she needed.  We now have PT, OT, and possibly speech through them.  They are concerned about her lack of progress and feel that she should have more support than EI can provide.  So we will still keep our vision therapist because we love her and I picked her out and fought for her, but we will probably kiss the rest of EI good-bye. 

We also went to Charlottesville to try a new eye doctor out.  That was a horrible experience.  Not only did he dismiss the CVI, he felt like it was pointless to do anything for Cary and basically blew us off.  I was enraged.  We are going back to VCU.  They may not know much about CVI, but are willing to work with us and lean.  Plus I am going up the totem pole.  There are so many unknowns about Cary's phase and her eyes that we are just going to the top dog.  Dr. Roman.  The woman who knows it inside, outside, and backwards.  It can take up to a year to get to see her, but it will be worth it. 

Plus, because I am not busy enough around here we have started working on a communication board.  Cary is hitting that pain in the butt magical age known as the terrible twos.  The things that used to make her happy now just tick her off.  She can't tell me what she wants and sign language is hard for her due to her Cerbral Palsy.  So my awesome vision therapist and speech came up with a plan.  It is very high tech ready for it? 
Ohhh.  All the cool kids have one.  So here is the idea.  Because of CVI most children until in a phase three cannot do pictures or one dimensional objects.  In fact most small children need "real" objects.  They have to understand what an apple is before you move to a picture.  So say it is playtime and I give Cary a choice between her two favorite items a ball or a book.  With a little Velcro magic viola! 
So she looks and chooses.  This does a couple of things.  It empowers her to make a choice, gives her immediate feedback, and saves me from having to listen to her have a fit.  So it is a win win.  Now I only have two objects.  Too many objects and she will not be able to "see" her choices and frankly, toddlers need limited choice anyway.  We are building this board with all sorts of stuff.  It has been fun to see what can be Velcro-ed around here. 

As for me I started a new class.  I am in Partners in Policy Making.  It has been amazing and mind blowing.  I could write a whole post on that and I probably will, but for now let me say that I am learning how to become an even stronger advocate for my children and have met people who are amazing. 

We are constantly going and I can feel fall in the air.  I am hoping to take some time this weekend just to relax and enjoy my family and drink some hot tea.  I want time to slow down just a little so I can breathe and just be.  There is time enough to change the world, but for now I want to snuggle with my two blessings and enjoy being their mommy.

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