Because Science Trumps Feelings

If you read Peace Out (https://amomsjourney-mydyslexiclife.com/2020/04/22/peace-out/), then you can see I’m pretty over it.  I mean hell, I called it Peace Out.

So while my husband plays angry, head banging, metal music upstairs while playing video games on the X-Box, and my son sits near me playing Roblox on his iPad, I figured I’d spend a little time and let you know about the big questions we’ve been pondering.

Dyslexia remediation is almost complete.  I mean literally.  In a few short months, other than supports and perhaps the occasional jump in to assist, his scores show that as far as his reading is concerned, we are near the end of the remediation road.  Four years later, and this is the prize, and he is over the moon.

We ignored his dysgraphia this entire time, and that was a fundamental mistake, I know that now.  I need to give myself and my husband grace though, because based on the information that we had at the time, we made the best decision that we could.  That decision was that his dyslexia was significant and he needed help in a critical way.  We dove into that battle front with all that we had and ignored all else.  His handwriting was legible and that was going to have to suffice for the short term.

Well, short term turned into four years.  Almost two years ago he had an OT evaluation and we learned a ton about him.  It was then that I understood that we could not keep putting off his dysgraphia, but we had program commitments and a timeline.  When both spouses work full time and you have a child with dyslexia who is receiving private tutoring there’s a lot going on.  We let him play sports because he wanted to play sports and we did a bit of counseling in there somewhere, but fitting in OT on top of that, both logistically and financially, was more than we could handle.

I’ve wanted the end of dyslexia remediation for a long time so I could switch gears and finally do the OT he needs.  That is now on the horizon, but so is so much more.

I experienced enlightenment upon hearing Dr. Brenda Taylor speak at a recent conference.  It had been a rough day but I was in a great mood going into her session, and by the end I was almost in tears, desperate to leave and get home and pour myself a BIG glass of wine.  I spoke to her for quite a while afterwards, but I couldn’t let her go.  I showed her work samples and asked questions and told her that her entire lecture could have had a picture of my son displayed because everything she said was him to the core.

My son struggles with orthographic processing and what I came to understand during that lecture is that he also struggles with orthographic dysgraphia, and for us, that just explained so much.

The timing couldn’t have been better too because I had just finished hog tying the district into appropriately implementing AT, well sort of appropriately, the jury is still out on that one, but at least good enough for the momentary needs of 5th grade.  Now that the writing requirements had kicked up a significant notch, I was understanding that his dysgraphia was more than letter shapes and fine motor.  My child needs to be taught how to write, meaning, taught how to construct his thoughts and translate them to paper.

Then, I learned a HUGE thing, right before the last ARD which was that grade level can be determined for dysgraphia; meaning, we know what grade level spelling, comprehension, accuracy, rate, fluency and other functions are on, but we can also get that data for his writing ability.

MIND BLOWN!

So this is a combo of WISC-V, TOWL and KTEA-III.  Have the WISC-V and the KTEA-III, but not the TOWL; so I need to get that, right? Right.  That’s the next step, privately.

Ok. So, here is the plan thus far….

1. Get private administration of TOWL and ask for assessment of what grade level child is writing on (ASAP)
2. Complete Neuhaus (May)
3. Continue working with secondary tutor (she assures me this won’t take long)
4. Return to Lindamood-Bell over the summer for 40 hours to tie together loose ends and synchronize everything (June – July)
5. Begin OT in the fall (September)

But, the e-Learning environment has me understanding these new challenges with writing, and so I must do more.

1. He needs handwriting remediation too, which we’ve known, but see reasons why this has been put off above; plus according to Dr. Taylor’s lecture, both OT and handwriting practice need to be done at the same time.  The method for handwriting instruction is still being decided on.
2. He needs to be taught how to write, as in stories and papers.  He needs to understand the concepts of story, argument, defense, composition, exposition, etc.  Well, I’m sort of taking that on myself because I’m unsure anyone else can do better than I can.  Why?  I have a BA in English / Creating Writing. (Sorry, Dad.)

Additionally, there’s one more piece to the puzzle.

1. Hubby work with child on math.  Math is his thing, it makes sense to him, but he has holes in multiplication impacting his math skills and making it challenging to move onto more complex concepts, like division, fractions, multi-step equations; so, hubby and Chris Woodin’s book to the rescue.

That’s a lot.

Oh, what was that?  Where does the school team, remediation, IEP, goals, anything fit into that equation?

Funny you should ask that question.

For my family at least, I’m not sure they do.

Why?

Well, as I stated in Peace Out, I have yet to see hard data that they know what they’re actually doing, so why would I keep them involved in this process?  I mean seriously, why?

Yes, they’re legally required to do right by our kids, but they don’t, so is that a good reason?

Yes, I could sue for failure to abide by FAPE, IDEA, Endrew F., but that’s costly and takes time. I’m tired of the ever perpetual momentum of time and waiting for people to do the right thing, the ethical thing.

We are monumentally blessed to be able to provide this ourselves, so why keep them involved?

We said when we switched to public school that we would never expect them to do right by our child, we hoped, but our expectations were always set at less than zero.  I guess if you never have expectations for someone then their complete and utter failure to deliver doesn’t disappoint you then does it?

Well, it still stung, harshly, but only my husband and I, and probably far more so me, but hubby plays his emotions close to his vest on this subject because I’m the one screaming for change all over the Internet.

Oh, one last thing, we have stolen four years from our child for dyslexia remediation.  We’ve given him as much of a childhood as we can, but we want him to have as normal of an experience in school as possible, and by shouldering the burden ourselves, we can give that to him.

Let’s focus on what I said in Peace Out, the district has proven time and time again that they do not understand nor are capable of providing what is needed.  I could sue them for it, and I could probably win, after all I have data coming out of my ears, but I can spend $50,000 in so many more meaningful ways that will have a lasting impact on my son NOW. (Primarily I can avoid the debt that due process would represent and spend money as we earn it on what he needs.)

Plus, I’m a crafty, devious parent advocate, and maybe I’m just saying that to throw them off my scent.  I wouldn’t put that past me to be sure.  I know they read my blog and spy on my page.  Lol!

Truth is, I’m tired.  I’m tired of fighting a battle for services they are too incompetent to understand he needs, but even if they did provide it, it will be a far cry from a standard good enough to even be called remediation.

So, why stay on this monkey merry-go-round, as I’ve been calling it?

Seriously, why?

Insanity is the definition of doing the same thing over and over again expecting a different result.  Well, I’m not insane.  My little ARDs for my one and only child aren’t going to move the marker for all children.  I have other ways I can do that.

The game is afoot. Cry havoc, and let slip the dogs of war!