Sunday, May 4, 2014

Zillupdate

It's  been a few weeks since my last post putting down my initial reaction to Zilla's diagnosis.  In some way (ehmm emotionally) things have really calmed down since then and in others have really picked up. 
Our first day of therapy...I'm a little obsessed with this shirt
We were set up with an assessment meeting with Early Childhood Intervention (ECI) so that they could determine if Zilla qualifies for services.  The assessment included a  lot of questioning Hubskie and I as well as watching Zilla move about their room and play with their toys.  After all the questions and observation, it was determined he qualified for fine motor skills on his left side and communication.  We were definitely expecting to qualify for fine motor skills and I was a little relieved to hear he also qualified for communication.  We have a pretty rough time with him sometimes as his go to means of communication is to immediately break down into tears.  This can be frustrating and confusing for all of us.  At the time of the assessment he wasn't gesturing much to indicate wanting something and also didn't seem to be picking up on basic words like "Ball" or even "mama" and "dada".  

So this is where the "things have picked up" comes in.  Our schedules are becoming increasingly filled with appointments for Zilla.  ECI is awesome in that they will go to his daycare, however, it is encouraged for a parent to come when possible so that we can observe the exercises they are doing and put them into practice at home.  In the last couple of weeks he started both his occupational and life skills therapy.  The OT will be coming once a week and the LST will come every other week.  Since his daycare is so close I am trying to use my lunch breaks to go to his appointments, but this can make for a pretty hectic, no-break kind of day.

We had our first OT appointment at home so that the therapist could see the kind of environment he has and the types of toys at home they we may be able to incorporate into therapy.  He was such a little angel during this appointment.  I kept telling the therapist how unusual this was.  He sat in my lap for 30 minutes, y'all!  That is UNHEARD of.   It's amazing when he sits in my lap for 5 minutes.  But he sat there, all sorts of engaged and was so compliant using his left hand for things.  While he still struggled with some of the tasks he wasn't getting frustrated and just participated so well.  Of course every time since this appointment that we have tried to do exercises at home he gets very upset with momma and dada for trying to convince him to use his left hand.  We may need out OT to move in with us. 

At his second OT appointment we were at his home day care and it didn't go quite as smoothly.  He wasn't necessarily fussy, but the other kids were outside so he was very distracted and uninterested in her toys.  We ended up going out side and tried to incorporate some of the outside activities into therapy.

We have only met with the LST once and it was mostly a meet and greet so she could observe Zilla for awhile and ask us some questions.  The main goal with her will be helping Aidan find gestures he can use to communicate his needs and wants to us other than screaming.  I am hopeful this will help.  Hubskie and I have really been struggling with his behavior at times.  He can switch from being in a great mood to an unsootheable tantrum in a matter of seconds.  This becomes quite the problem at places like Church.  I'm also hoping she will give us some ideas on how to help him concentrate on tasks for longer than 5 minutes.  This won't only help in his therapy, but also when we go places where he has to sit for awhile.

As far as our work at home, it is a work in progress.  Like I said, he seems to do so well with the therapist but has no patience with me.  I have the feeling this is because he is bored with his toys here at home. There are a lot of sensory activities I think he will enjoy that I can't wait to try with him, but we haven't had much free time the past few weeks and these activities tend to be a little messier.  I am also so glad it is finally warming up.  This means lots more time outside and going to the park.  There are a lot of wonderful ways to incorporate park equipment into exercise.  Even though most of these are gross motor related.  Zilla tends to be calmer outside, which makes it a little easier to get him let me move around his fingers and stretch out his arm.

Upcoming:  Zilla will be starting at a Montessori school!  We will miss a lot about his old day care, like all the time he got to spend with his cousin, but I think this will be a good move for him to have a little more structure.  He also has a neurology appointment this week which means back to Scottish Rite!

Overall we are doing great and ready for the road ahead of us.  Even though Zilla can be exhausting at times with his never ending supply of energy and tendency towards being stubborn, we know we are blessed to have him as our son.  It's hard to explain sometimes because I'm sure Hubskie and I look tired a lot (because we are), but gosh we love this kid so much.  It really is worth every bit of energy to experience this kind of love. 




2 comments:

  1. I pray that the LST helps Aidan with his communication. I've seen the patience you and Jason show him and I can only imagine it's like the patience that the Lord must have with me. I know I've said it before, but yall are such wonderful parents.

    Your last paragraph is perfect and beautifully written. I couldn't explain parenthood any better. I love you!!

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    1. PS I had a reply all written on my phone the day you posted this and then I hit something and the page refreshed. I was so frustrated, so I just walked into GND and had a margarita. :P

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