Check your lens

WOW. What a difference a week or two can make.

As soon as this "inciting event" (reserved for private discussion) began on the Thursday evening before last, I knew I was in the fight of my life. The fight FOR my kid's life. A fight unlike any I have ever fought for him and I have been at it for 13 years and 5 months about now. I really had no idea what was about to transpire.

Well, I still don't.

What I DO know is that I doubled down and reached out to a new Education Advocate. We had partnered with one for a short time in Memphis before we moved, but the school system he and I worked for felt his assisting special education clients, even those enrolled in other districts, was a conflict of interest. I can see that, but it took us from our intensive study.

 

I set out to reorganize THE BINDER. From the beginning, I have kept detailed notes of IEPs, communications, report cards, and standardized testing. I have been putting a puzzle together to get him the help he needs. I have spent thousands upon thousands of dollars on courses and programs to help me reach him. I coached him with online memory exercises until I couldn't afford that anymore. We paid for $60 an hour tutoring twice a week for MONTHS. I have yelled and screamed and cried BUCKETS that I wish I could stay at home to give him the attention he needs. I wish I could afford a $20,000 a year school where he can get the one on one instruction that I could see he needed at AGE 6.5 when I spent THIRTY minutes trying to break down 3 x 3 and literally felt and described to my husband that it was like his brain was slipping gears. I read about executive functioning deficits and ADHD. Everything I ever researched was ADHD and ODD. Never ASD. He just presented so well, he had such a solid mask for so long. Until he didn't.

He has always been inconsistent. Ebbs and flows have been Evan's pattern...everything calmed down a while after the last big blow up. So, we rested again. Yes, I was getting more and more concerned that he was not passing standardized tests, but I also knew that pushing him was never effective. Our plan was to continue to foster his social skills, help him find some friends and learn organization skills.

Meeting after meeting with teachers just kept the same cycle...geez, nothing is really working, let's circle back and try that one thing again. Have you ever thought about an assignment book? 

Have you met me? I color-code my calendar and organize my closet by garment type (and color). I shelf-face the spices and canned goods. Yes. I thought about a chore chart and SMART parenting and 1-2-3 Magic and, and, and, and...

Do NOT misunderstand. I am not a helicopter parent or a snowplow Mom. I am an educated woman and a caring mother who will never stop ADVOCATING for the removal of obstacles in his path that other children do not have to endure. I trusted myself when I believed that he was doing all that he could. It did not feel at all right to believe the story that he didn't care about his grades or that he meant to be a jerk. So I BACKED OFF to get a clearer picture of where he began and ended.

(Lucas texted me this ^ last week. It saved me to know he could feel my love in this way.)

I will absolutely get testy if I ever hear a hint of someone saying such things about us: we have always "coddled him" or "let him get away with stuff." WRONG. We just could feel it in our heart of hearts that certain things were TRULY beyond his control. We learned YEARS ago that spanking was not effective, so we stopped. Discipline crosses the line into abuse if it's not bringing about a change. Common sense tells me that and I know my child better than anyone on this planet because I study him like a textbook.

Always have.

Which is why I feel a little embarrassed that I missed him.

It is a natural part of this discovery process, I know. I vacillate between being mad at myself for not seeing it or embarrassed because I am usually so keen on such things as a professional educator of twenty years. I have psychology in my background - I began a masters degree in counseling...but I am NOT a special education teacher or a psychologist and I listened so hard to what ONE PERSON said about him in diagnosis when he was 5.5 years old.

 

"Possible ODD - Oppositional Defiant Disorder"

Unchecked, this turns into Conduct Disorder, and my limited knowledge tells that this usually means a life of crime and difficulty with relationships.

I highlighted key things in all the documents and created a timeline of his educational career. The data is staggering. I would highly recommend that you get yourself a 3-inch three-ring binder and organize EVERYTHING chronologically and examine it this way - as if it were not your child. It is power. full.

Evan would take things from people, just because he wanted to use them. He never connected that it would hurt someone to take their things, EVEN though he would lose his ever-loving mind if someone took his stuff. So, we took back a candy bar that one time and those cool ember things from the State Park that other time. He really wanted to put them in the fire to see all the cool colors and so did we, but we couldn't because we elected to PUNISH him for taking them instead of COACHING him to better communicate or look at consequences.

A neurotypical child learns to avoid negative outcomes. They begin to anticipate how someone will react to their behavior ahead of doing it. My older son never needed to be told anything more than a couple of times. Saying "no" was almost unnecessary when he responded so well to "the look."

 

Our other guy was the exact opposite. That's what they'll tell you, too. That your kids will be total opposites. For thirteen years, I believed that. Now I begin the journey of seeing everything anew. Nothing has changed about his strengths, his passions, his shortcomings, disabilities or struggles, but the way that we are engaging with them has shifted. I see my older son honing in on those areas where Evan is intellectually strong and connecting purposefully with him there. They have a LOT in common.

He is still annoying sometimes and has a bit of an Eyeore personality, but knowing what is truly causing those behaviors and mannerisms makes the outcome completely different. I have spent thirteen years saying, "he needs you to explain the steps" yet I, too, would get so exasperated - like GEEZ, are you even TRYING to get this?! It has been exhausting.

 

But I am weeping with gratitude this morning to tell you about the magic in the room the other night when he said some quirky, awkward (but funny) thing and my older son and I just exchanged a look of wonder and delight and love and thanks and acceptance and responsibility.

 

This new lens just fits.  And I feel a love and affection for my son that I was almost completely robbed of through our journey. The deluge is strong right now, but I know that this kid is gonna be alright and he and his brother are truly the only children in the world that I need to worry about right now.

 

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