Wednesday, August 07, 2013

My name is Julie. And I'm a Binder Mom.

Last October I shared that Mason was struggling with reading.  A few weeks later, I shared with much excitement what I thought was finally a breakthrough; however, I was very vague in my post and you've not heard anything else about it since then.  The truth is that the months since that post have been perhaps the most difficult time of my life, the deepest, loneliest valley I've walked through.  I've been silent on my blog about it, and I haven't really blogged a whole lot about anything since then.  There were times when I thought I might begin to share, but I did not, could not.  But now it's time.

It was after a conversation with Mason's teacher last November and a conversation with my sister-in-law and a conversation with our pediatrician that we finally realized why Mason was having such a hard time learning how to read.  He is dyslexic.  Even as I stare at the words I just typed, I still fear.  I fear what people might think of him, how he might be judged, how he might be treated or talked about.  That is why I've not talked about this before now on my blog.  That is why, even still, only our family and closest friends know that Mason is dyslexic.  Until now, I guess!

I had heard of dyslexia before, but I truly didn't know what it was.  At that point way back in November, I wasn't even quite sure what to do.  And I certainly had NO IDEA how in the world to help my son.  All I know is that I felt a sense of relief.  There was finally an explanation and a reason as to why it's been so hard . . . and now we could "do something about it" . . . and now we don't have to live under the pressure of grades and timed reading scores and academic probation.  Or so I thought.

Seth and I decided that we were going to do everything we could, everything in our power, exhaust every resource available to figure this thing out and help our son.  We also decided that we were not going to wait on the school to do whatever they needed to do or were supposed to do but that we were going to go ahead and do what we needed to do.  Upon the recommendation of our pediatrician, we chose a child psychologist in Baton Rouge to consult with.  During the months of December and January, Mason participated in a complete psycho-educational evaluation.  This just means he took a whole lot of tests and did a whole lot of activities.  I sat down with the doctor on February 5 while he explained the results and his recommendations on how we should proceed and how we could best help Mason.  The results of the evaluation confirmed what we'd already figured out: dyslexia.

The sense of relief I'd felt in November quickly dissipated.  In its place was anxiety, uncertainty, discouragement and helplessness.  It was overwhelming.  At that moment, I knew it was not going to be easy.  It was going to be hard.  Dang hard.

The following Friday, February 15, I met with Mason's teacher, evaluation in hand.  It was during that meeting with her that I felt what seemed like an impossible situation just sit on my shoulders, the sheer weight of it crushing me to pieces.  Five minutes into the meeting, I started crying, and I could not stop.  That was the first time since November that I cried.  I listened as Mason's teacher gently led me through what was happening and what could potentially happen.  At this point, Mason was really struggling in reading.  It was the worst it had ever been.  Honestly, he was failing reading.

Day in and day out Mason would go to school and do the work.  He'd come home, and we'd spend two hours on homework, the majority of that being reading.  He was working. so. hard.  He was giving it his all.  And he had (or he felt like he had) nothing to show for it.  His self-esteem and his confidence were really low at this point.  So how could I tell my child that he might have to repeat 2nd grade?  FAIL 2nd grade?  My child who I knew was smart and intelligent.  My child who still had big dreams of becoming a dentist.  My child who is a whiz at math and can memorize like nobody's business.  I just knew that would crush his spirit to pieces.  And I felt absolutely helpless.

That night Seth and I had reservations at our favorite restaurant for Valentine's Day.  I'd already dressed for our date before my meeting with Mason's teacher.  When I got home, I had to wash my face and reapply all of my makeup.  I'm pretty sure that was the worst date I've ever been on in my life!  I was such a wreck that I couldn't even tell Seth about my meeting with Mason's teacher.  It was all I could do to try to hold it together until we got out of that restaurant.  By that point, all seemed hopeless.

The following week was absolutely debilitating.  I experienced fear like I've never experienced in my entire life.  It sucked the very breath and life out of me.  I felt it.  I knew it.  I prayed about it.  But it was a fear that took hold of me and wouldn't let go.  I knew what I was supposed to do, I knew it was the enemy, I knew what God's Word says about fear, but I was completely paralyzed.  I did not know what to do or where to turn.  I did not know how to help my child.  And I was dying on the inside.

It was Sunday again.  Church again.  The next afternoon, a friend from church called me.  We talk a lot, see each other often.  But I hadn't told her a word about what was going on.  After a few minutes, she said something like this:  I'm not real sure what's going on with you right now, but yesterday at church you just looked so tired.  A lot more tired than usual.  And it's like you might be worried about something.  I don't know what's going on, but I think something is, and it's okay if you want to talk about it.

So I did a little bit.  I honestly don't remember what she said after that, but I do remember thinking that I had to get myself together.  I obviously couldn't hide it anymore because other people were beginning to notice that something was wrong.  I organized my thoughts and made a list (because I love making a list because I love checking things off.  Literally.) of what I thought I should do to proceed.  It was a short list, only seven items.  And then I sent my list to my prayer partners and asked them to pray for us.

I spent the next three weeks working through my list.  One of the items included finding some sort of tutoring help (at this point, I knew I couldn't do it on my own anymore because I didn't know how to "teach" someone who is dyslexic) and researching private therapy providers.  Dr. H had recommended occupational therapy (OT) to help refine some of Mason's fine motor skills, particularly handwriting.  I contacted several therapy groups and got the same answer from all of them: we'd love to help, but we have a waiting list right now.  It was also during this time and through these conversations with social workers and therapists that I came to learn that Mason would probably need speech therapy (SLP), too.  Have I mentioned how overwhelming this was?  And still is.

And then, through a series of events that could only have been ordained by the Lord, Mason began educational therapy at McMain's Children's Developmental Center in Baton Rouge on March 19.  They didn't have any current openings for OT or SLP, but we were on a waiting list for the summer.  We went every Tuesday and Thursday.  I would arrive at school at 2:30, wait in the carpool line until 3:00 (I had to get there at 2:30 to get in the front of the line to beat the buses) and then go to Baton Rouge.  This was so much easier said than done because traffic getting over the Mississippi River bridge and into Baton Rouge at that time of day was a nightmare.  Our appointment time was 4:15.  And because of traffic, we were late on our very first day.  Not only that, but Hannah Kate had her dance class on Thursdays at 4:30.  I thought I would be able to drop Mason off at therapy and then go back over the river to have her at dance by 4:30 and then go back across the river again to pick Mason up at 5:00 and then across again to pick Hannah Kate up at 5:30.  Yeah, that didn't work at all.  So on Thursdays I would take Hannah Kate to my mother-in-law's, and she would take her to dance.  I picked her up after therapy.  For the remainder of March, April and May, this is what we did on Tuesdays and Thursdays.

As if this wasn't enough, baseball started at the end of April.  Our games were on Mondays, Wednesdays and Fridays.  So we had therapy on Tuesdays and Thursdays and games on the other days of the weeks.  Not to mention homework.  It was absolutely exhausting.  The end of baseball season and the end of the school year couldn't get here fast enough.

In April Mason was evaluated for OT and SLP.  He began those therapies at McMain's on May 30.  So every Thursday this summer, Mason had OT and SLP.

It was also during this same time that we'd requested an evaluation from Mason's school.  You see, they will review private evaluations, but they have to do their own also.  We submitted copies of his evaluations and therapy reports.  His teacher submitted a lot of documentation.  We specifically requested that he be evaluated for a 504 plan to address the learning differences created by the dyslexia.  This just means that the school would put some accommodations in place that would "level the playing field" for him.  Examples of accommodations for a student with dyslexia might be: breaking a reading test down into smaller parts instead of completing the test all at once, giving the student more time to complete a reading test, verbally testing on those subjects that aren't testing for reading (like science and social studies).  We requested the evaluation for Mason based on the Americans with Disabilities Act and the Individuals with Disabilities Education Act.

I'd done my research and even talked with several special education teachers and directors.  It seemed to me that it should be relatively easy for the school to help us address Mason's dyslexia and partner with us to be sure his education plan is appropriate for him.  We requested the evaluation in November.  When I did not hear anything from the administration at the school, we requested the evaluation again in February.  I also wrote several letters to the administration.  Days passed.  Weeks.  Even months.  On April 19, I finally had a meeting with the Student Assessment Team at Mason's school.  At this meeting, I was told that our request for an evaluation for Mason was denied.  They were not going to do an evaluation.  I was . . . shocked.  By this time . . . honestly, I was numb.  It had been such a long, grueling four months.  I could not even think straight, could not even speak coherently.  I was speechless.  We have doctor's and therapists' reports, we have classroom work, we have everything.  We did everything we were supposed to do.  And yet we were told that Mason is "too high functioning in other areas" and "an average student" and that perhaps we should just keep in mind that his magnet school is a school of choice and may not be the right fit for him.  Oh really?!?

After that meeting on April 19, I checked Mason out of class, and we went to Disney World.  It was the week of spring break.  During that week, I did not give one single thought to dyslexia or therapy or evaluations or school.  I just had fun, the kind of fun I hadn't had in a very long time.  But Disney only lasted a week and then it was back to school and therapy.  At this point, I will not share anymore of what happened at school because I do not have anything nice to say about that right now.  We'll just leave it at that.

And here we are, the night before the first day of 3rd grade.  Yes, Mason will go to 3rd grade tomorrow!  We began to see some signs that the educational therapy is helping him, and his reading grade actually improved at bit at the end of the year.  He finished 2nd grade well, and he finished strong.  But I've dreaded this day ever since the last day of 2nd grade.  We had orientation last week.  I made it through that pretty good.  I met with Mason's teacher on Monday.  I told her our story, cried a little.  My meeting with her was open and honest and even encouraging.  I have a binder that I've been keeping of Mason's evaluations and therapy reports and report cards and information about dyslexia and the ADA and the IDEA and all correspondence I've written and conversations I've had.  I carry this binder with me everywhere I go.  It has neatly divided, labeled tabs.  It also has different colored sticky notes sticking out everywhere.  Mason's teacher smiled when she saw it.  She said, "Ah, I know you.  You're a Binder Mom."

Yes, I am.  I am a Binder Mom.  

Sometimes (like last Monday) fear sneaks its way back in.  One of the (MANY) lessons I've learned during these past few months is that of trust.  Real, authentic trust in God and in His plan for my life and the lives of my children.  It's one thing to say I trust God in all things and with all things.  It's another thing to actually trust God in all things and with all things and to live it out!  If I believe and know God and His Word (and I do!), I believe and know that His plan is good and best (Jeremiah 29:11).  If His plan, which I believe and know is good and best, why would I fear?  Why would I fear His good and best plan?  After all, that's the plan I want!  His plan!

I've asked myself many times what is it exactly that I fear . . . what is it exactly that took my breath away?  Fear of failure.  I've always had a fear of failure.  But this time it was different.  I had a fear of failing my beloved Mason, fear that I would mess up and not do the right thing for him or say the right thing for him.  And for the first time, this was something that I could not fix for my child, something I can not take away.

I've told God many times that He picked the wrong Momma for this.  I was supposed to be strong for my child.  The Momma is supposed to be the one whom the child leans on.  This Momma has been frail and weak.  And my Mason . . . he has been so strong and so courageous throughout this whole thing.  Sure, there was a time when he was discouraged, real discouraged.  But he didn't let it stop him.  He kept on going.  And going.  I didn't even realize it until later, but I was the one leaning on him.

I will share how we came to the conclusion that Mason is dyslexic (because people always ask me that).  I will also share what dyslexia is (because I can assure you it is not just "reading words backwards" or "mixing up b's and d's").  I will also share how the Lord worked and orchestrated the circumstances to put us where we needed to be (the story of how we ended up in therapy at McMain's is a bit funny).

But for today, I'm sharing that I am a Binder Mom.  I have color coded dividing tabs and color coded sticky notes.  I have color coded laundry baskets.  I am also going to bind the enemy and the fear in which he wants me to live and look forward to new beginnings and a fresh start in 3rd grade.  I am daily binding myself to my Lord Jesus Christ and trusting Him in all things and with all things, walking in the power and victory that is mine IN HIM.

There are several verses the Lord gave me over and over these past few months.  They are on the front cover of my binder.

"Be strong and of good courage, do not fear nor be afraid of them; for the LORD your God, He is the One who goes with you.  He will not leave you nor forsake you.  And the LORD, He is the One who goes before you.  He will be with you.  He will not leave you nor forsake you; do not fear nor be dismayed."  ~Deuteronomy 31:6, 8

The Lord has gone before us on every single step of this journey.  I can't wait to share more of that with you.

"The LORD is my strength and my shield; My heart trusted in Him, and I am helped; Therefore my heart greatly rejoices, and with my song I will praise Him."  ~Psalm 28:7

Even in the midst of the struggle and the uncertainty, I never want to cease to praise Him.  

"For You will light my lamp; The LORD my God will enlighten my darkness.  For by You I can run against a troop, by my God I can leap over a wall.  As for God, His way is perfect; The word of the LORD is proven; He is a shield to all who trust in Him.  For who is God, except the LORD?  And who is a rock, except our God?  It is God who arms me with strength, and makes my way perfect."  ~Psalm 18:28-32

The LORD makes impossible situations possible!

"Then she called the name of the LORD who spoke to her, You-Are-The-God-Who-Sees."  ~Genesis 16:13

Not once did God ever forget us!  Not once did God ever not know what we were going through.  God saw every tear, heard every cry.  Not once were we ever alone.

I know this journey . . . well, it isn't going to be easy.  And reading, well, it's going to be hard for awhile.  But I also know that I can rest and trust God with Mason.  His plan for Mason . . . well, I'm sure it's going to knock my socks off one day!  I am merely humbled and blessed that I get to be a small part of it.


Anonymous said...

Thank you for sharing. I needed this today! Love you friend!

Bonnie said...

Girl...I could have told you that you were a "Binder Mom" back in the day:) Listen, sweetie, you probably don't know this, but I have been teaching special ed resource now for 13 years. I know..Jack of All Trades:) In the public school system he has a learning disability (they don't label it as dyslexia anymore). He should be served on an IEP for a Learning Disability in reading, probably written expression, speech, etc. AND he is JUST FINE. You are the best mommy in the world and he is blessed to have you. I am here if you need ANYTHING. I love you.

Harriette Connell said...

Sniff! Sniff! You are an AMAZING mom!!! God knew EXACTLY what he was doing when he chose you to be his mother. A mom with less faith would have given up and not trusted God. A mom with less intelligence would not have been able to read and do the research you have done that led you to help for Mason. A mom with less determination would not have done all those things in your binder! A mom with less heart would not have preserved her child's joyful spirit through struggles! LOVE YOU and LOVE that sweet boy of yours!

Becky Bean said...

Thanks for sharing, julie! I know several momma friends who have children with dyslexia and have also had initial struggles with diagnosis and cooperation with their schools... hope mason has an awesome year at school this year!

Jessica Bayham said...

Julie, you are one of the strongest women I know! Sometimes, as in this case, too strong (to let anyone know your pain). If anyone is fully prepared for these kinds of trials; it is YOU! Consider yourself refined through this fire! God doesn't make mistakes. He knew you would trust Him.... and persevere!