Tuesday, May 20, 2014

Poking the Mama Bear

I need to calm down. 

But, I also need to write. So, the calm can wait.  You can save your "Keep Calm and fill-in-the-blank" Brittish humor until I'm finished. 

I am a Mama Bear.  I love my cubs.  I am protective of them in every sense of the word.  I look out for every aspect of their existence, including their education.  In fact, I am adamant about their schooling and what they need to thrive.  I am a thankful Mama Bear because I have two wonderful, helpful, and willing schools with teachers who are driven to not only educate the minds of my cubs, but their hearts as well.  However, one of my cubs has an IEP.  And this means, by law, other teachers and staff who do NOT know my child are involved in planning his education as well.  Once a year, we are required to sit down with a panel and discuss Isaac with people who have never met him face-to-face, to discuss his services, progress, and update any other education needs he may have for the upcoming school year.  This, this is a love/hate relationship.  Especially today. 

Mama Bear has been poked. 

Up until this point, I have had no complaints about the school district with whom I have to, by law, explain who my Isaac is from a few sheets of paper and statistics.  Up until this point, I have been happy to sit in a meeting, smile, listen to teachers who have never met my son say things like, "Wow!  It sounds like Isaac is doing very well!"  and "He's reading at THAT level, ALREADY?"  After today, I am going to have a seriously hard time biting my tongue.

In order for Isaac to get services outside of our school district of residence with his IEP (Individualized Education Plan) and to be eligible to choose where we want to send him, we are required to keep the district we DID NOT choose informed of his progress each year.  This means, a meeting to update his education and therapy goals.  At these meetings, teachers and therapists as well as a representative for the district we DO NOT USE present their paperwork (paperwork that is provided by Isaac's current teachers and therapists, as well as other staff who educate him at Julie Billiart). I know, it's a bit confusing and skewed, but that's the way it is.  We all sit down, chat a little bit, smile, laugh, sign a few things, and then we shake hands and part ways. 

The hard part is when the district we DIDN'T CHOOSE loses track of my cub.  He slips through the cracks of time and becomes just another kid with an education plan outside of their realm. If these meetings are not kept, and the IEP is allowed to expire, let's just say you DON'T want Mama Bear to get to that point.  And we are almost at that point--days away, in fact. 

Isaac's IEP expires the 27th.  Less than a week away AND over a long holiday weekend.  I was getting nervous...anxious even.  I haven't received a letter or email allowing me to choose a date of a meeting.  After calling various people and leaving unanswered messages for weeks now, my team at Julie Billiart had to step in and help me get information that technically, isn't their responsibility to get.

I understand everyone is under a lot of pressure.  Everyone is under some sort of deadline.  Every district is dealing with influxes of more and more children being diagnosed with special needs, and they are drowning in meeting state requirements and fulfilling all the paperwork on time.  I get it.  I do.  I just need to know that you're doing SOMETHING.  ANYTHING.  A simple return email  or call would suffice so I can at least get something on the calendar and have an option!  Because of a lack of planning and insufficient foresight, I am forced to be where and when you tell me.  So....

Hear this, district.  Please, get your act together.  I deserve at least more than a week's notice as to a meeting as important as this.  Isaac deserves more than that. 

When we sit down on Thursday (which is just 2 days away, and is the only time you can "fit" us in, apparently...) please don't take it personally if I don't chat in depth about how wonderfullly my son is doing, or how excellent he is in reading or math, or how "typical" he sounds.  Don't take it as a sign of disrespect that I just want you to write down the services he needs and to tell me truthfully what boxes I am checking and what I am signing for or against.  Be patient as I ask questions and read every paragraph, word for word.  Because this is my son.  You haven't met him, but if you did, you would marvel at how much he's grown and how far he's come by being at Julie Billiart, but you would also see he wouldn't fit in your classroom.  I don't need to hear you tell me I'm doing a great job, because honestly, I know that.  I appreciate you making time for me, even if it was down to the wire.  This is just another reason why I am glad Isaac is where he is. This is my cub's life we are writing... 

Keep Calm, and Mama Bear On.  

Friday, May 2, 2014

Without the words

The rain is pouring and before I can say "Let me grab the umbrella..." Isaac is already bounding out of the van.  "Wooooohooooo!" He shouts and runs to the door of the Tai Kwon Do studio we are checking out as I am scrambling to clumsily catch up with him without looking like I am entering myself into a wet t-shirt contest.  Thank you, Lord, for "April showers."

Isaac is obviously excited.  So much so that he literally cannot keep still.  He is hopping up and down and smiling, "Is this the place?  Are we going to start?  Oh!  Look!  A water fall!"  My friend and her son are also with us to do an interview and visit for a possible new place for our boys to get involved with some summer activities through our Autism Scholarships.  This place was recommended and has done a wonderful job with kids on the spectrum, and since we have funds left after schooling, we thought we would see if this place, these people, would be good fits.

I have learned that I can't just sign Isaac up into a program.  It's not that easy.  There is preparation involved for everyone.  We need to see if the place is comfortable, the people good communicators, the ideology compliant to the way he can grow.  It's also necessary to stand back and let things happen--not to force a situation.  You just know when it fits. And when it doesn't.

As Isaac was bouncing rigidly and asking questions, the instructor introduced herself in a quiet, zen-like manner. Oh boy.

"Hello, Isaac, my name is-"

"HI!  I'm Isaac, oh wait, you said that [giggles, bouncing up and down] soooooo is this where we practice? [runs out on the mat while instructor tries to interject] Oh, this is cool.  Are we gonna fight now?  [makes a fighting pose]"

The instructor looks at me, and I shrug, "He has a big brother and they...like to wrestle." Nice, Christa.  I look over just in time to see Isaac touching everything--the belts displayed on the wall, the small fountain (supposedly for creating calm?), photos, you name it.  He was asking non-stop questions to anyone in a 10 foot radius:  "Are these your belts?"  "Is this fountain always running?"  "Wow!  Nice swords!"  

As our interview continued, Isaac could not sit still.  He was spastic on the couch in the instructor's office, interrupting to ask questions like, "Is that real sand in there?"  "Where did you get those shells? At the beach?"  "Why do you have so many candles?"  "Ooh, I like this music, it's soothing!"  I struggled not to laugh and took a moment to enjoy his chattiness, even though it may not have been at the appropriate time...even though it might have been excessive.  He wouldn't let her take charge of the conversation, in fact, he kept turning the questions she would ask him back on her!  "What is your favorite thing to do at school, Isaac?" "Um...[he went on to list his entire day schedule, as if reading it from a memory calendar, expressively of course] What about you?  What do YOU like?  Oh, wait...not what you like...what do you NOT like?  Yeah, what do you not like?"  We didn't finish the interview because of all of Isaac's questions.  Honestly, I was a little embarrassed at all the chattiness, all the moving and bouncing and inability to focus.  I caught myself and threw that feeling out of the window because there is joy with many words, and there is joy without.  I have known both.

Hope is that thing with feathers that perches in the soul and sings the tune without the words and never stops... at all. ~Emily Dickinson

I love words.  I express with words.  I understand with words.  I use words as my magnifying glass, as my secret decoder, and my frying pan.  Words are food to my soul, and without them to help me examine the world, I have a hard time feeling anything.

So when Isaac didn't talk, and when he struggled to use words with me, I felt...nothing.  It took a long time to understand the truth of Dickinson's quote:  It IS possible to find hope in the song without words.  Isaac is proof of that.  He was my song, seemingly written out of tune; striking dissonant chords, and then, when it seemed I couldn't handle the strain of it any longer, a resolve that made me appreciate the simple truth that some songs can be sung in another key.  It doesn't mean they are wrong, just beautiful and complex in a unique way that not every one is accustomed to.  .

When Isaac's words flow...no, flood, out of his mouth, I can smile and close my eyes and listen to a song, now, complete with words. And when Isaac is bouncing, joyful, hopeful, I can see his song, even without lyrics.

He will most likely not be attending the program we visited, but I am glad we did.  Isaac and I were both reminded of just how much hope and poetry both our songs have. ~

Isaac, singing a song without words