I had some specific hopes about Dylan’s 5th grade experience that unfortunately did not come to be. It’s been a pretty tough year in many ways, a lot of negative feedback from a teacher who does not understand that Dylan is not forgetful or inattentive or easily distracted on purpose. He definitely needs to work on putting forth his best effort, but it’s become clear that he’s facing a bit of an uphill battle when it comes to a standard class environment.

I now know how difficult it is to go from “Hmm, I think there’s an issue here” to “And now we have a diagnosis.” The process began back in November with a pediatrician appointment and stretched on until April, when the long wait for an evaluation came to be.

This is one of those topics that is not entirely mine to talk about and I’m simply unsure what the boundaries are, but in general terms Dylan is wired differently than some kids and that makes certain things a challenge. He is gifted with a staggering memory for details when it comes to things he’s interested in — I mean, he can tell you the final score for just about any basketball game that has ever occured, or the exact outfit he wore during a special dinner on our first family trip to Hawaii — but give him a list of three things to do and he’s got the last one wrong while the first two are long forgotten.

His executive functioning was described by a doctor as an inability (or at least a major difficulty) to categorize things in his brain in what’s typically thought of as an efficient way. It’s an exhaustive process for him to access and assemble information towards problem solving because he’s not grouping things together or applying certain logic like this + that = this.

To his teacher’s eyes, he’s not trying, but his brain is actually having to work extra hard for what appears to be minimum effect.

At this point, my goal for 5th grade is survival with as much self esteem protected as possible. Dylan’s greatest challenge is not believing in himself, a situation that has been exponentially worsened by a year of feeling like a failure at school.

Looking ahead to middle school, he’ll have a 504 in place and hopefully a chance to really sit down and get his teachers aligned with making sure he has what he needs to navigate 6th grade. Keeping materials organized, keeping track of assignments, staying on task — it’s all going to be difficult. We’ll help as much as we can, of course, but it’s largely a giant question mark in my head right now. Does he need accomodations? Tutoring? Counseling? All of the above, none of the above?

Academic success for Dylan is likely going to look different than what it looks like for Riley, and that’s a tough place for Dylan to be too. He constantly compares himself to Riley’s straight-A report cards and it breaks my heart. How can I continue to lift Riley up for all the things he’s great at, while helping Dylan understand that he has his own unique traits and they are no less valuable?

I want Dylan to realize what an incredibly special, sweet, funny, smart, and interesting kid he is. I want him to know it doesn’t matter what kind of grades he gets, as long as he’s trying hard. I want him to feel more confidence and more curiosity about his fascinating capabilities.

Most of all, I want him to know he’s not defined by a diagnosis, or one teacher’s close-minded and frankly crappy assessment of who he is as a person. He is so many things, a great complex assortment of wondrous thoughts and characteristics. He deserves much better than he got this year, and once again, I find myself hoping for a better set of circumstances next time.

Comments

22 Responses to “A different, beautiful brain”

  1. Lucia Frohling on May 14th, 2019 12:36 pm

    Long time reader, but first time commenter. ALLLL the feels with this post. I, too, have a kiddo who is wired uniquely and wonderfully 9& sometimes frustratingly) different from his twin sister and older brother. We have been immensely blessed with teachers who understand his strengths (incredible memory for things he’s interested in & the biggest heart in all the land) and how he’s differently wired (auditory processing like your Dylan). Our little dude is 6, so we’re early on in this journey, so I will be reading and learning from you. You’re such an incredible Mom!!

  2. Julie on May 14th, 2019 1:27 pm

    Oh how I feel for you guys. My son, Sammy,now 14, is much like Dylan. I cannot tell you what a world of difference having a team at school who sees how Dylan is processing and puts a plan in place to help him through the challenges. I’m really hoping that 504 does the trick, along with a new round of teachers and staff members who are the exact opposite of Mr. 5th Grade and are willing to work with Dylan’s strengths and find ways to help him clear he hurdles. Having anything in place is a great start, and you are a fantastic advocate for your son. If you need to lean on someone who’s walking something of a similar path with her own kid, I’m here, rooting for Dylan all the way.

  3. willikat on May 14th, 2019 1:51 pm

    Oy. I have been through this heartache. Since rem was about 2 (he’s now 4). He has a severe speech delay (although he has made great progress) and the whole process is just so hard. On every level. And it’s hard when there are other kids in the family too. I just feel your unique heartache.

  4. Jodi on May 14th, 2019 1:51 pm

    Linda,

    My ADHD kid got straights As in middle school after a terrible experience in elementary school Middle school can be easier because kids can walk around and the periods are shorter. Also, middle school can just be easier for boys. Don’t give up hope yet. Elementary was awful for us and middle school has been so much better. Good luck!

  5. Cara on May 14th, 2019 2:07 pm

    Oh man, do I ever feel you on this one. My 6th grader daughter has inattentive type ADHD and the last several years have been such a huge struggle for us. She pretty much has zero executive functioning skills. She’s completely disorganized despite frequent and repeated attempts to get her that way. She forgets class assignments or gets distracted midway through and doesn’t finish them. She qualifies as “gifted” which isn’t uncommon in kids with ADHD apparently. Thankfully she’s in a very supportive private school with a student teacher ratio of 3:1 for core classes. However, I do wish they offered more structured support for her particular issues. I’m curious to know what kinds of accommodations public schools offer to kids like her because I don’t really know what to ask for. I will say that my 26 year old stepson was much the same way when he was in elementary and middle school (although he very much had the hyperactive component to ADHD which my daughter does not) and he graduated from high school with lots of AP credits, graduated from college and is a productive member of society today :)

  6. Allison on May 14th, 2019 2:35 pm

    Oh man, big hugs to both of you.ADHD is a real bitch at times. That said, my oldest has been on a 504 plan for the past few years due to his ADHD and it has been super helpful.

  7. Monique on May 14th, 2019 2:47 pm

    My son was diagnosed with ADHD in 2nd grade – we were looking for signs as both his sisters and both his parents have it as well. He’s on medication and it’s helped so much – he said that it’s like his brain is working. He’s finishing 4th grade and is mostly As with a few Bs.

    I urge couseling. We go to a mental health clinic that requires at least quarterly appointments to see how the medication is doing and offered monthly (or more) counseling too. It’s been great – she works with him on emotional issues, conflict issues, and organization. He sees her mostly with me, but knows he has the option of talking to her alone whenever he wants. It’s really helped him.

  8. Tracy on May 14th, 2019 3:00 pm

    Sounds so familiar! With 2 boys with ADHD (and dyslexia), I know a bit of what you’re going through. My 6th grader transitioned from an IEP to a 504 this year – a few things that have helped him a lot in middle school:
    – Technology – Teachers post his homework in Google classroom and he can turn in almost every assignment online. This reduces the chance of losing or forgetting homework.
    – Use of calculator – His exec functioning issues show up in math class and he has trouble recalling simple multiplication/addition/subtraction facts. As long as he’s not being tested on those math facts, he uses a calculator so he can focus on learning the actual match concept being taught and not spend all his time trying to recall 6×7.
    – Spelling – similar to the calculator – if he’s not being tested on spelling, let the spelling errors go and concentrate on what he’s saying, not whether it’s spelled correctly
    – Extra time on tests – just a little buffer for when things take him a little more time — he hates this one because he just wants to be done as fast as possible, but he does need it sometimes.

    Those are a few things working for us in middle school – every kid is different, but might spark some ideas for you! Good luck!

  9. Amy on May 14th, 2019 4:05 pm

    Yes. I have a very similar situation at my house and we have not yet figured out how to manage. My daughter is a freshman now, and still really struggling. It has been up and down her whole educational career but most especially since middle school (we are white knuckling through the end of freshman year currently). Her brother, one year older, is a super achiever who tests really well. She also has anxiety disorder which affects her social relationships and has really done a number on her self confidence. We also have a 504 and some teachers and much more helpful than others. We are committed to a tutor 2x a week. She absolutely refuses therapy so although we tried that for a few years we are currently “taking a break”. She is on ADD meds (started in 7 grade) and anxiety meds and honestly I wish every day she wasn’t. We have had not that much success with the ADD meds (we have tried MANY MANY kinds. The anxiety meds completely stopped the panic attacks. I don’t have any advice here but I do wish you an easier time of it and I am folllowing here to see if there is something I can glean that will help us. Solidarity.

  10. Beth Compton on May 14th, 2019 4:50 pm

    My son is similar – he was diagnosed early, 1st grade. He is in 9th grade now and doing well academically (socially is a different story – very much a loner). We’ve had great teachers who really “saw” what makes him bright, funny and special and other teachers who didn’t recognize his executive function issues (including one in 2nd grade who told me once as I was volunteering at school, “He’s just very immature.” Really? Thanks.

    Some tips for 6th grade –
    – Don’t get separate binders for each class as requested – get two large zipper binders and use dividers. One for before locker break and one for after. Then he just has to switch them out. Bring both home every day so you don’t forget papers.
    – You can request copies of notes as an accommodation. My son has horrible handwriting. He would make an effort to take notes in class (filling in blanks on study guides, for example). The teacher would also supply a copy of a filled in version to use to study by.
    – write a letter at the very beginning of the year to send to each teacher – talk about his wonderful qualities, what he enjoys, hobbies. Then explain his challenges and what strategies have worked for him (positive reinforcement, tapping on desk as subtle way to stay on task) Mention that you rely on the compassion of his teachers to see beyond his executive functioning issues.

    Best of luck – There is good info online, too. You and he aren’t alone.

  11. Jen on May 14th, 2019 5:03 pm

    I’m hoping all the best for you guys. Life was turned upside down in my home when my straight A, student of the year suddenly had a panic attack so bad that she couldn’t physically get herself out of our car and walk into school. It has been over 2 months since she has set foot in the school and I dont know when this will be resolved. I completely understand the feelings of the unknown and what to expect next. Sorry I have been lax in snail mail. I meant to write much sooner. Always keeping you in my thoughts. You are a great mom and I’m so glad that you are getting answers and explanations as to how Dylan processes things.

  12. Sarah on May 14th, 2019 10:05 pm

    We went through this with my son when he was in 5th grade as well. The signs were there for a while, but middle school was when it all came to a head, especially thanks to one teacher who maybe should have retired five or ten years earlier than when she had my son, if you know what I mean.

    We medicate my son, and we noticed an immediate difference. He is now 18 and graduating HS next month, with a pretty nice scholarship to the school he wanted to go to. It’s still a struggle for him to do things that we take for granted…this is a child who got on the school bus home and FORGOT HIS BACKPACK. He literally would not remember his head if it wasn’t attached. I feel the sting of the label sometimes, because many people don’t understand, or judge, or think he’s lazy. (he actually IS lazy, but not in the ways other people want to defined it). Anyway. Please reach out if you want someone who’s been there and can offer some support. I hope all the things you’ve done so far will help him succeed and, more importantly, be able to have confidence in himself again.

  13. Jennifer Brown on May 15th, 2019 8:00 am

    Living the same dream. My son was diagnosed with ADHD the same year I got the diagnosis on why he was deaf in his left ear (he was born that way and it’s because the cochlear nerve did not develop on the left side). We tried meds for the ADHD although I wanted to address all the behavior issues with the deafness first, to see if that would have an impact on the ADHD. He didn’t like the meds (“they make me feel slow” “well, buddy, that’s maybe how the rest of us are”)
    Long story short, it’s three years later and he’s back on the meds and they really help him. I don’t love the pharma route, but I do love the fact that he’s much calmer and much more reasonable to work with. He can hyper focus and get nasty when I have to cut him off his gaming, but he understands why and doesn’t argue as much when I explain. Welcome to the club. They are special boys, indeed.

  14. Deb on May 15th, 2019 3:26 pm

    If homeschooling ever becomes a thing you’d consider, feel free to message me. School can be a very discouraging environment for people who are even the tiniest bit different.

  15. Lauralyzer on May 16th, 2019 12:26 pm

    Us too!! My daughter is the same age as Dylan, and struggles with all the same things. She was diagnosed in late 2014. The meds help, but this sentence “give him a list of three things to do and he’s got the last one wrong while the first two are long forgotten,” is OUR LIFE. Plus then she will burst into tears when she remembers she was supposed to be doing something and thinks she’s going to be in trouble. Then we spend 20 minutes soothing and reassuring her, and meanwhile those three things are STILL NOT DONE.

    Oh sorry, I was supposed to be empathizing and instead just started ranting …

    Anyway, where we live the diagnosis of ADHD gets us diddly-squat in terms of school supports, so I hope the 504 and other resources are helpful and I hope you’ll continue to share about how that looks and how you manage it all. The most reassuring thing I can say is that when G was diagnosed, it suddenly freed me to stop putting her square peg in a round hole, in terms of Expert Parenting Advice that was never meant for her anyway. It was like a license to do things Our Way instead of Their Way, and to figure out together what that meant. ‘course, she’s my only child, YMMV with an older sibling in the picture. I wish you all the best as you figure this out together.

  16. Shawna on May 17th, 2019 7:09 am

    My brother (29 this month) was diagnosed as having ADHD and dysgraphia as a young child, and just from this one post of yours I can tell you that you are doing far and away a better job of helping him than my father and stepmother did for my brother. Their tactic was pretty much medicate him for a few years, but spend pretty much his entire life excusing any behaviour of his by saying “he can’t help it, he has a condition”. And I’m talking things like letting him just point and grunt when he wanted things to be passed to him at the dinner table; no basic manners in any social situation; letting him eat by pushing food onto a spoon with his fingers (always visibly grubby because he was never expected to wash his hands before dinner) well into his mid-teens when he himself decided to try a knife and fork, etc. He currently is an unwashed, 400 pound lump who is unemployed and living in their basement playing video games 24/7. His plan is to inherit the house and win the lottery so he can continue his lifestyle undisturbed for the rest of his days. Yet all they do is chirp about how he’s “getting better” and is “becoming so helpful around the house” every time his name comes up.

    No matter what you do, the fact you’re doing something to support Dylan and help him deal with his challenges makes you a hero in my eyes.

  17. Jennifer H. on May 17th, 2019 10:07 am

    My son had the year that you are describing in 4th grade. It was heartbreaking to witness.
    The great news is that 6th grade has been fantastic! He has “study skills” as one of his electives. The spend about half of the hour with a curriculum- goal setting, organization, task completion- and about half doing homework. So, he’s done with homework when he gets home (usually) and we never have to fight about it. Win/win. It is a class that is just offered to kids with IEPs, but I think most all 6th graders would benefit! He’s felt very successful this year.

  18. Jennifer Hitch on May 17th, 2019 10:34 am

    O would be remiss if I didn’t mention that it was Apex summer camp at UW that got us going in the right direction. It’s a therapeutic summer camp for kids with ADHD, autism and related things.
    We had given up on medication for our ADHD kid- he couldn’t tolerate the side effects (they were awful!) after we’d been through 3 different drug classes.
    Apex has a prescribing nurse practitioner, so she was able to sort through all the data on his behavior that all of the interns gathered. She was able to suggest trying a drug that isn’t often used, and then was able to follow up with more data over the next few weeks and suggest fine tuning the dosage and the time of day that he takes it. It has been really, really effective for him.
    Here is the website, I realize that Seattle might be too far for you to go, but maybe there is something similar where you are. http://depts.washington.edu/apex/apex/Home.html

  19. Ginny on May 17th, 2019 2:51 pm

    Oh boy, I have the same child- mine is 20 years old & just finished his 2nd year in college. We’ve done regular private school/private school for LD (OMG the $$)/public school/IEP v. no IEP/tutors/you name it…& ultimately we’ve had good years & bad. Have you seen the Blindside? You know the Kathy Bates character who just sat down with him for hours every night & did his work with him? That’s what we needed…alas no Kathy Bates character around here…

    I could talk all day but I’ll try to pick a few things that might be helpful. It DOES get better with age as they learn coping skills. The teacher can make or break it as you’ve seen- but starting in middle school they have multiple teachers & that helps.

    Oh one practice thing- by the time high school rolled around we didn’t bother with the IEP- the accommodations didn’t really help, he didn’t like them, & of course they were a huge paperwork hassle. This was the right decision for high school BUT THEN I found out many colleges will accept your high school IEP. I would have kept it going for that reason.

    Try to find other things he’s good at to give him confidence! My son got a part time job in high school & that ended up being SO good for him! I think he was able to really feel competent for the first time.

    Like I said I could go on all day but hang in there! He really is probably going to be just fine, just like my son is.

  20. Heather on May 18th, 2019 1:57 pm

    My daughter got the same dx (this + that = that….what?! Does it?) in about 7th grade. No formal plan in place as she went to a private school that was able to make some accommodations just based on recommendations. She’s just finished her first year of college and is just doing incredibly! I know Dylan will get there — and he’ll even bring you along!

  21. Hanna Nelson on May 18th, 2019 5:03 pm

    Living it. Middle school is super hard, trying to get the 504 in 6th grade is hard, so good you’re starting now. This resource was recommended to us by the excellent substitute counselor:
    https://executivefunctioningsuccess.com/
    The author is in Portland and runs classes. Several people have recommended her book: 50 tips.

  22. Nix on May 20th, 2019 7:45 am

    This parenting gig is hard, yea? I have 3 sons, all with ADD, and one with Asperger’s Syndrome. Two of my three had IEP’s through middle school and one of those two had a 504 in place until graduation.
    You do what you have to and don’t be afraid to be a very vocal advocate for your Dylan. I hated being THAT PARENT, the one everyone sees as difficult or a pain but I also knew that being THAT PARENT was the only way my son’s education was going to happen.
    I struggled, as well, with how to celebrate each boy’s strength without it undermining another’s. You’re a great mother and I have no doubts at all you’ll maneuver that minefield well. You bolster those boys up, make sure they take an active part in celebrating each other’s successes and show them examples of how different does NOT equal less than.
    You’re amazing. I’ve been along for this ride at a distance for many years now and you’ve shown your sons through your own living how to be strong and resilient and how to manage Life’s pitfalls. Please know a lot of us are here, have walked this path and are cheering you on.

Leave a Reply