A Message from the School...

Well it’s been a little less than a year since I last posted.  At that time I had not yet had the case conference with the school to determine Jack’s IEP.  Well, we had the meeting and the school failed to identify any of the deficits the Neuro psychologist diagnosed (even though I gave them the 2 reports from 2 different specialists with Phds prior to the meeting).  Oh, they did identify the obvious, ADHD, so needless the say the IEP has failed miserably.  It was about as individualized as a stick of Juicy Fruit gum!

So our annual case conference is coming and it begins to stir up a lot of emotions in me – hurt, anger, disbelief, and determination. 

Believe me when I say I have been doing a lot of praying - begging God to give me direction.  After all, this is my son we’re talking about – my most prized possession, my blessing, one of my most favorite people, the one God entrusted me with. 

I know I can fight the school and try to force them to honor the doctor’s diagnosis and provide proper accommodations – I’ve met with an attorney and they say I have a very strong case.  But the Lord woke me up at 2:00 in the morning and pointed out how even if I get them to comply, they’ll still get it wrong. 

As I began to look back over Jack’s school experience, punishment has always been their response to everything.  For example one of his goals in his IEP is to work on organization.  So if he fails, he gets lunch detention.  If he forgets something, he gets lunch detention.  To me that would be like giving a kid with a limp lunch detention for not running as fast as the other kids. 

One day Jack came home from school all upset.  He went on a rant for about an hour and a half.  I took notes as he spoke.  3 things he said that I'll never forget are:

1. He said there was a video he watched about the worst science experiments or something on that order - but the point was they would try to intimidate people to stop stuttering.  As if the person could somehow control it.
2. You can't put everyone through the meat grinder - Pink Floyd
3. You shouldn't try to make fish climb a tree!

Jack's points reminded me of the case conference when I explicitly said “I do not want him punished for forgetting something”, one of the school attendees said “What do you suggest we do?” – rather sarcastically I might add.  I would suggest a reward system or a little bit of compassion and assistance – after all isn’t that what accommodation means? 

But now I realize he really didn’t know any other way to deal with it.  Unfortunately that is the culture of that school and many others, I’m sure.

Then my friend happened to share an article on my facebook page “Why so many kids can’t sit still in school today.”  As I was reading it, the thing that stuck out to me was when it mentioned how the little boy came home with yellow stickers instead of green stickers and how every day he’s reminded that his behavior is unacceptable.  This broke my heart.  That’s my Jack!  I remember in kindergarten he’d come home upset that he had to change his color and half the time he didn’t know what for.

Now instead of changing his color, it’s lunch detention.  He’s still getting the same message that his behavior is not acceptable, even if it’s something he can’t control.  And Jack doesn’t have behavioral issues, so I can imagine how much worse it is for a kid who does.

Another one of my friends, who constantly talks me off the ledge, said something to me – just because a school is a 4-star or “A” school doesn’t mean it’s an “A” school for Jack. 

She convinced me to go check out Discovery Charter School.  Which I did!  It was awesome.  It was noisy, the kids were engaged, no teachers were yelling or threatening them with punishment.  I even got emotional when I noticed the seating in the room.  There were kids standing at a window with a counter doing their work.  There were swivel stools, exercise balls, cushions on the floor with kids hanging out doing their work.  This was so awesome to me.  Jack does his homework with a headset on, rolling around on an exercise ball or on a balance board with his Ipad. And this school did this, without someone forcing them to.  How refreshing!  How inspiring!  How grateful I was just to see it! 

As I was driving yesterday and talking to the Lord, it dawned on me.  Jack’s school is not good enough for him.  That doesn’t mean it’s not good enough for other kids.  It just means it’s not good enough for him!  He deserves the best – the best from me and the best from him and the best from his school. 

So if your child has low self-esteem and struggles with self-worth – even though you constantly build him up – take a look at the school environment.  What message are they sending him every day?  

There are other options out there and I’m in the process of finding the best one for my Jack. 

Your child may not want to change schools, but it's like anything.  If what they're going through is not good for them, then you have to make the choice.  And know that you'll never regret making things better for your child.  

Please, keep me in your prayers and I’ll say a little prayer for all the parents and all the kids and all the schools.  

Today's Not the Day

Do you ever feel like today is just not the day?  It's not the day to have one more thing go wrong.  It's not the day to find the solutions to the problem.  It's not the day to feel sure of anything.

I'm being honest - I am emotionally spent.  Jack had a rough day yesterday at school.

Today we had an online day and this morning we were breezing along.  Jack was flying through his work, happy and motivated.  He even said several times "Man, mom I'm smart!"  Of course I followed up with "Yes, you are!"

Then the afternoon hit.  All of a sudden this free sailing kid became a dead weight.  I couldn't motivate him no matter what I tried.  He was spent - there was no fuel left in his tank.  His battery was dead - and to be honest so was mine.

I keep having this inward struggle with the way things are done in the public school system.  Kids are inundated with work - thereby the parents are too.  Whatever happened to reading the chapter, answering the questions, and doing the vocabulary?  Instead we do the same thing 15 different ways - killing trees and brain cells along the way.

I'm not seeing evidence of anyone coming out smarter in the end from all this work.  All I see is stress and a sense of failure.  With what we're going through, it seems we have no free time to just enjoy each other - it always revolves around school work.

I'm torn between grades don't matter, because I already found out they don't necessarily represent reality, and grades mean everything because every time Jack doesn't do well, he feels like a failure. So I spend half the time convincing him that grades don't determine his value and that testing is subjective because if they'd tested him on things he's interested in, he'd ace it every time.

So all this rambling is really about trying to make a decision that's right for my son, knowing that whatever decision I make is going to impact him greatly.  Some of the questions I'm dealing with right now is:

Should I move him to a different school?  Should I do online school.  Should I try medication to help with the low energy in the afternoon and the focus or wait and see if the therapies work?  Are the recommendations going to work?  Should I do any of these things now or should I wait?

As a mom, I just want to swoop in and make it all right - right now!  Sometimes it's the not knowing that is so exhausting or trying to figure out all the options that can be so tiring.  Some of you may be going through the same things.  If you are, surround yourself with encouraging, compassionate people.

I know I have nothing to complain or worry about.  Many people have it much worse - but again, I'm just tired today.  I know that God has me and will never leave me nor forsake me - I'm just tired today.  I know God has great plans for Jack, but I'm just tired today.

It's days like this that I am so thankful that I have good friends and family who keep reassuring me of all this.  I know this to be true, but sometimes I'm just too tired to voice it.  I'm not doubting where we'll end up, I'm just hoping I have the stamina to keep going.

I know today's not the day for me to find all the answers, but maybe in all my efforts today I found one of the answers or discovered something new.  So for all those who love someone who is struggling, be encouraged because tomorrow is another day and there will be more answers to find, more hurdles to jump, and more joys to be had amidst the struggle.

So you pray for us, and I'll pray for you.  And get some sleep, we have another big day in front of us tomorrow and maybe tomorrow will be the day!

Mountains out of Molehills

The other day Jack had a hard day at school.  As we were riding home from school I could hear it in his voice – his frustration, his anger, and his hurt.  He never quite got to the BIG thing that made the day bad.  There  was a kid he has regular dislike for that did something to Jack’s friend.  There was a girl who said something mean.  There was a teacher who Jack felt was unfair. 

As we were driving, Jack said several times “… and I didn’t do anything!”  - meaning he was getting all this grief and he didn’t do anything wrong.  I told him “Exactly!  Now you’re getting the picture!  You hit the nail on the head!  You didn’t do anything and people were still jerks to you.  So them being jerks to you has nothing to do with you!  It has to do with them.”  Then I went on to tell him the stories of how there were people I love in my life who would talk bad about me behind my back and it would hurt my heart.  Then I had the revelation that if I didn’t do anything to them, there was no way I could make it right.  So their treatment of me was on them.  I realized that if I’m alright with the Lord, then I’m alright.

With Jack though there seems to be a hypersensitivity to what others say or think of him.  If one kid doesn’t like him, no one likes him.  If a teacher gets on his case, all the teachers hate him.  It’s as if the old saying making mountains out of molehills was created to describe Jack.  In fact, I’m a little ashamed to say, that when Jack was little I would tell him he’s Drama and I’m Drama’s mama.  But, what I’m learning through this process is that these molehills are mountains to him and I need to teach him to climb those mountains.

Many times people will say "Suck it up!"  These situations that happen aren’t necessarily things he can just suck up.  He needs counseled through them.  They need to be presented in a way that he can logically and emotionally accept – and that’s where counseling and stimulating truth for him through scripture and examples seem to help.

There’s a saying “Every feeling begins with a thought.”  If I can keep his thoughts on the truth of what an awesome kid he is and that everyone reacts based on who they are and not on who he is, I’m hopeful it will make a world of difference.

So if you’re living with someone who seems to make big deals out of things that to you seem small, just remember, it is BIG to them.  Imagine if you’re like me and haven’t done much mountain climbing – If you had to climb a large hill or a large sand dune, you’d probably be winded.  But if you take a person who has climbed Mount Everest, they’d think it was nothing to climb the large sand dune.  It’s all relative.

But, I believe Jack's perspective is going to motivate him in whatever path he chooses to conquer the mountains and change the world!

To quote Steve Jobs, “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently; they're not fond of rules, and they have no respect for the status quo. You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things. They push the human race forward, and while some may see them as the crazy ones, we see genius, because the people who are crazy enough to think that they can change the world, are the ones who do."

This was taken from a good link regarding ADHD and what a person with ADHD goes through.  Take a look and it may help you realize that person you live with isn’t being overly sensitive or making excuses.  Every molehill truly is a mountain to them.  

A River Runs Through It

Okay, as promised, here are the assessment results:  He has been diagnosed as follows:

Abnormal Auditory Processing Disorder

Aphasia

Fine Motor Skills (severe impairment)

Sensory-perceptual skills (mild to moderate impairment)

Verbal Memory (borderline)

Visual-Spatial Skills (mild impairment)

Dyslexia (moderate impairment)

Expressive language (low average)

Attention (significantly deviant)

Impulsivity (significantly deviant)

Nonverbal Processing Speed (mild to moderate impairment)

Processing Speed (low average)          

Arithmetic (low average)

Spelling (low average)

Learning Disability in Written Expression

Learning Disability in Reading

Attention Deficit Hyperactivity Disorder, Combined Type

Social Anxiety

So what does this all mean?  I’m not quite sure but I’m in the process of finding out. 

The day that George and I went to see Dr. Harrington to get these results, I became very emotional.  My bubby has been dealing with all this his whole life and he’s done it with such a good attitude!  Those summers spent wrestling with him so he’d read a book.  The 3 to 4 hour homework sessions.  The constant reminder for him to turn in his homework – it was all so clear now.

As I began to read up on ADHD, I found many of the symptoms described him – forgetting to turn in homework; starting but not completing assignments; misplacing things; forgetting things; not being able to complete a checklist of tasks; the constant fidgeting while doing homework.  I knew something was going on because Jack is such a good kid, wanting to please.  I knew he wasn’t just not following through out of laziness or rebellion.  But I didn’t quite get it until I got these results.

The one thing this list of deficits revealed to us was that Jack is an amazing kid – and any kid like him.  He was able to get relatively good grades all these years, with a good attitude and he was dealing with all this.  It confirmed that he did have the thing that we have been trying to instill in him – a good work ethic.  I would say his is phenomenal! 

After discussing the results with the doctor, I had asked her if I should check into vision therapy for Jack as I have heard amazing things about that  (Dr. Sprehe is one of the few doctors in the area who do vision therapy – see link at side).  She asked me to hold off until she performed one more assessment.

This was an assessment where they used color overlays.  I was able to witness this assessment and it was mind-blowing.  As Jack is there looking at a white piece of paper with black print on it, she began to ask him different questions – questions that no one had ever thought of asking him.  She asked him if anything moved on the page, if he saw any colors, if there were any other things he saw.  As he began describing pulsing; colors; and rivers running through the page, I was floored.  He never knew he was seeing things differently than anyone else and he never would have known had she not asked the right questions.

The next amazing thing was when she brought out some color overlays.  She had him read with the overlays and you could see the improvement immediately!  She asked him the same questions again and he responded positively each time “It’s good!  It’s really good!” he’d say.

This experience made me realize that things are not always as they appear.  My son experiences things differently than I do.  So when he knows how to do something last week, but doesn’t seem to understand it this week – he’s not being contrary – he’s being real.  When he forgets to turn in his homework after doing it a second time, he really did forget.  When he can’t seem to line his numbers up when he’s multiplying, he is trying to be neat.  This kid is constantly trying.  I get teared up just thinking about the effort he must put in to try and get things right each and every day.

By the way, the assessment she did with the overlay, helped determine that Jack has something called Irlen Syndrome – It’s not a vision problem.  Jack has had an extensive vision assessment and all is good.  Rather, it’s a matter of how the brain processes visual information.  

A couple of weekends ago, we took a trip to Toledo, OH so Jack could get a pair of glasses that he can use while he reads.  The overlays have been known to improve reading comprehension, attention and many other issues dramatically, so we're hoping the same will be true for Jack.

Fingers crossed – believing that God is directing our path and that this is just one of things that is going to help my bubby.

How Jack Sees Things

Brain with & without color overlay

Possible Improvements

You're Gonna Be

If you have a child or know someone who does and they are seeing that their child is struggling, maybe my posts and the comments of others will help.  I wasn’t sure what would be the best format to share this in – a blog or a facebook page – I just wanted to be able to share our story and our experiences.  I’ll share information and links I find along the way and encourage others to share any positive experiences or information they have as well. Sometimes it feels like you’re alone but there are great people out there who are good at what they do and are willing to help.  Stay encouraged!  It’s a lot of work, but your child is worth it.

Some of you may know my son Jack.  He is an awesome kid with wisdom beyond his 12 years.  He is very loving and thoughtful.  He enjoys video games, movies and drawing.  He writes some very creative stories and has a unique way of looking at things.  Up until this year, Jack has done fairly well in school.  I have always noticed a problem with focus and what seemed to me to be some processing issues.  But not having any experience with learning disabilities, I didn't realize how much was really going on.  Over the years I had mentioned my concerns but they were always quieted by people telling me “his grades are too good.”

It wasn’t until this year (6^th grade), with 7 different classes, an IPad and a heavy work load that the deficits became undeniable.  Now again, I’m confessing my ignorance to how the whole school system works.  I assumed because he received A’s, B’s and C’s in his prior grades he was doing well.  It wasn’t until recent assessments that I found out he has pretty significant deficits in many areas.

I believe it was in October when I discovered he was failing many of his classes – this was the evening Jack broke down and cried and told me “It’s too much, mom!  It’s too much!” and it shook me to my core.  I saw my son, who is intelligent, sweet, and funny – always wanting to do good – feeling like a failure, broken by the system and I had to do something!

I’m writing this because I wasn’t quite sure what to do – there wasn’t a handbook that was readily available to tell me what to do next when your kid can’t take any more.  Again, not having any experience with learning difficulties, I didn’t know where to begin.  I was broken hearted that my son had to struggle and that he was beginning to hate school.

So I wallowed in my self-pity for a minute, feeling like a failure because I didn’t pick up on it earlier and do something about it.  After crying it out, and spending time in prayer, it was time for me to get up, put my big girl pants on and tackle it head on.

God is so good.  A good friend of mine and her daughter stepped in right when I needed them most.  Rachel, having a PhD performed a verbal behaviors milestone assessment with Jack via Google Hangouts.   Here she found some deficits.  So being the awesome person she is, her and her mom put together materials for me to use to help Jack.  So the weekend before Thanksgiving, the family loaded up the car and drove to Pittsburgh so I could take a crash course in a method to help Jack.  Once there, she taught me some techniques, loaded me down with boxes of flash cards and binders of materials -  all because they care ♥

What was the next step? – my friends suggested I contact the school for assessments.  So I contacted the school and they suggested I take him to his doctor for a medical diagnosis.  The doctor agreed with my thoughts that Jack had ADD.  He sent us to a Psychologist for determination.  We went to the Psychologist who said she believed he had ADD and other learning disabilities.  She in turn sent us to a Neuro-Psychologist who could perform the assessments we’d need in order to find out what was going on.  This doctor, Dr. Judith Harrington, was a God send.  Some of the assessments she performed were life changing.  I was able to witness something I wouldn’t have believed if I hadn’t seen it for myself. I'm excited to continue this journey and see where it takes us.  I'm expecting great things and can't wait to see who he's going to be!!!  (I’ll write more next time – sharing the assessment results and one particular assessment that really opened up my mind to what Jack was experiencing.)