Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Thursday, August 28, 2014

We Will Be Right Here

***Disclaimer: I started to write this post before Meagan was hospitalized.  We aren't really sure what is going on yet but as soon as we have anything definitive I will post an update.  For now, I wanted to complete this post about her school evaluation and plans for the year.***

Meagan had her hearing test and county school evaluations this week. She did fine at her hearing test - she was a little nervous to go in to the booth without me, but once I took her in there and got her settled with the audiologist and some toys, I was able to sneak out and Megs did just fine on her own.  She responded to everything she was asked to do and the audiologist said she passed well enough to have no restrictions at school.  The audiologist said they would retest Meagan's right ear before Kindergarten because it was getting more negative feedback than normal and they want to make sure that doesn't get worse.

Meagan hamming it up at her hearing test...

The next day Meagan had her school evaluation. We arrived at the testing school and met the team.  The PT, OT, SLP, Feeding Therapist and Nurse were all very nice and were immediately met with a big "hi!!" from Meagan. As soon as I put her on the ground she scooted right over and started playing.  The different therapists started their evaluations while the Nurse and I went to another room to go over Meagan's whole case from birth until now.  Once we were finished going through her complex history, we walked back to the testing room.  Before we even got there, I could hear several doors down the hallway absolute belly laughter coming from the room.... from the therapists! When we walked in, one of them turned to me and said "Oh my...she is hilarious!"  I just smiled and said "Oh, I know!"  Once the eval was finished, we got all the paperwork necessary to move forward and schedule her IEP meeting in early September.  Once we got home, I called the Special Needs Preschool teacher to leave a message with my information and to hopefully set up a class observation time.

A few mornings later, I had sent the older 3 girls off to school and it was just Maura, Meagan and me at home getting things done and making sure Maura was ready for school too.  I sat Meagan on my bed while I folded some nearby laundry and Maura hopped right up with her.  As you know, Meagan has a lot of sensory issues - a big one being her head.  She hates hats, headbands, and even her hair being brushed.  She absolutely screams if I ever have to put it in a ponytail or even try to put a sun hat on her.  So it amazed me when I saw Meagan allow Maura to mess with her head a little bit.  What was even more amazing, was when Meagan started to become irritated with it, Maura just adapted.  In the video you can hear her saying, "Meagan, I'm not brushing your hair! I'm just rubbing your head!"  It thought it was the most clever thing.  There she was, a 4 year old, trying to word something differently so Meagan would let her keep doing something that she really has a hard time tolerating.  I watched for a bit and then started to record it.  I just love the care that Maura has for her baby sister.

As the week went on, we were discussing Meagan's school options.  We got a call saying that actually they were going to change her from her home school to a different school - I'm sure the SN program there is great as well, but, it's in the wrong direction for me to drive and handle the older girls' schedule, and it's not our neighborhood school where I know a lot of families.  There was a lot of internal struggle as I went over the back and forth of if Meagan should even go to school this year, or if we should wait.  She's my "baby" and also thrives so much from being home with me and working with me.  She also has no lack of social interaction as her sisters are constant "mini therapists" for her every day, just as I had witnessed with Maura that week.  Yet, I could still see some of the benefits of her attending the SN preschool to get some of her services like OT or feeding therapies.  Many pros and cons went back and forth in my head until one night later in the week.  

That particular night, we were hanging out in the kitchen. We had the Frozen soundtrack on and were listening to Meagan's favorite songs over and over again while we made dinner, did work, etc... Each of the girls took turns singing with Meagan, helping her "dance," and sitting with her. I was watching the girls and enjoying them playing together really letting the music just pass me by.  I mean, how many times have I heard the Frozen soundtrack....? Probably one too many times.  However, I started to listen at one point and the lyrics caught my attention. It went:

"......'cuz for the first time in forever, I finally understand.  For the first time in forever, we can fix this hand in hand.  We can head down this mountain together. You don't have to live in fear. 'Cuz for the first time in forever, I will be right here........"

I realized at that moment if we decided to keep Meagan home this year, she would be ok. School will be so wonderful for her, and we are very excited about it,  but there is no rush if we aren't ready as a family, especially when the program we were hoping for didn't have a slot for her.  We weren't impressed with her secondary placement - so there's no need to jump in where I know I won't be comfortable.  If something changes in the future, and our local school has an opening,  then we can re-evaluate.  She has everything she needs where she is - her in home therapists (who are staying with her even after her third birthday - yay!), her parents, her pets, and best of all, her sisters.  Right now, she absolutely thrives on close relationships, and she already has that built in with her home team, family and therapists alike.  When she does go, the one thing that will never change would be her sisters' love for her. Their understanding of Meagan and who she is has grown exponentially this year, and it is truly inspiring to watch them invent their own ways of working with her or helping to understand things she is afraid of. Their special way of teaching her and caring for her that no school could ever offer her, and if we can give her that for another year, we will.  It amazes me the way the older girls can bring things out of her that no one else can.  Most importantly, the gift they give Meagan daily of never feeling alone is invaluable.  Meagan's favorite song is right - hand in hand, they are going to do this together.  We will be right here.

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