Advocating for Your Child When No One Will Listen

“Do not try. Do.”—Yoda

It started when she was about three years old. Our beautiful girl had trouble with words. I didn’t catch it as soon as my husband did because I stayed home with her all day, and she and I had our own language.

When he asked her questions, her answers confused him. “She’s not speaking well. I don’t understand her.”

I understand her fine,” I remember saying, my chin tilted a little higher than his.

“No. Watch.” He’d ask her for the crayons and she’d respond with “This?” and write in the air. Or he’d ask for scissors and she’d “cut” with her fingers. No words.

“Turn off the light,” he pointed. “The light switch.”

“The up and down?” she responded.

“The light switch.”

She’d furrow her brow and stand there.

Those were only a few examples.

Horrified was only one of many synonyms I felt. Why didn’t I catch this sooner? What’s wrong with me? Do I suck as a mom?

Immediately, I started addressing everything by its actual name, but her language didn’t significantly improve. I talked her pre-K teachers about it and they said, “That’s just her. She’ll be fine.” But it troubled me as other things began to emerge.

She’d cover her ears when the TV was on and say, “Turn it up. It’s too loud.”

“You want me to turn it down?” I’d ask.

“No, up.” She honestly didn’t understand my explanation.

“Up?” I’d increase the volume and she’d shake her head.

“Or down?” I’d decrease the volume and she’d smile and nod.

The same happened with the temperature in the house. “I want a blanket. I’m hot.”

Again, we’d have to go through the process and it would come down to a visual example of what she said and what she (probably) wanted. Her words were jumbled in the sentences. It was like talking to Yoda.

I had her tested through the school district she’d eventually attend and the response was, “I hear what you’re saying. Put her in pre-K and she’ll hear the other kids and it’ll straighten itself out.”

She’d already been in pre-K since she was 18 months old, so that advice fell flat.

I kept giving her proper names of things, made it a game. We’d sing songs together, dance around to Wiggles songs, whatever we could do to help her with her language, but things were still off. By the time of her last year in (a different) pre-K, I worried about Kindergarten.

My husband and I thought we might be making too much of things. Maybe we were simply over-reacting. Expecting her to be Einstein. Curie. Katherine Johnson at age four. Then, her pre-K teacher pulled us aside and said, “Something is off.”

Finally, someone else saw it, heard it, and couldn’t put their finger on it.

She explained that our girl couldn’t seem to do things without visual cues, that her speech was affected—the right words were there, but they didn’t always come out in the right order. She also told us our smart daughter was hungry for knowledge but didn’t want to read it or have it read to her; however, she appeared to soak it up in video.

We had her tested again through the school district. The speech therapist came out afterwards with a look on her face like, “Wow.”

I had high hopes we would have answers, but what I got was a warning. “I hear what you’re saying. The way she puts words in a sentence is off, but I’m telling you, she won’t qualify for anything. No one will care that she has this problem until third grade, when they take the STAAR test. Then everyone will get excited.”

As much as I appreciated her honesty, her statement left me pretty POed. No one would care? None of her teachers? Certainly that couldn’t be true. All would care if she couldn’t read well. Right?

To better prepare her for Kindergarten, we invested in Learning RX, a brain booster program that built her academic confidence, and she thrived. Yet, something still didn’t mesh. She did well in Kinder, but reading was a struggle, though she could memorize anything she heard and saw.

Watching her soak in and spit out information was a comfort, but how she could soak it in was the million dollar question.

First grade, she struggled to read. She hated it and I fought with her every day. Good times.

I talked to her teachers, and they worked with her as well. Her speech continued to be like talking to Yoda from time to time, but that even began to correct itself. Was I imagining this? Would she simply be a person who didn’t like reading?

Second grade, again, she struggled with reading, and again, we fought. She remembered material if there were visual cues. Picture books. She argued against any book that didn’t have any illustrations. I tried to explain things to her, but she veered towards graphic novel books (Nathan Hale, Brad Meltzer), but went by the photos more than the words.

Her teachers encouraged her, but weren’t sure what was holding her up. “Keep reading to her.”

Through all this, her math scores were great. She loved numbers; they were “easy.” I inquired to friends who were teachers about what it could be. She had (diagnosed) ADD, but was that all? Dyslexia? Auditory Processing Disorder? Language Processing Disorder?

I lost sleep over it—a lot of sleep—and probably consumed far too much cream filled coffee and chocolate trying to figure things out as shown by the size of my jeans.

We had her tested through the school again. Again, “nothing comes up. Just read to her more.” AHHHHHHHH!

In third grade, sure enough, the speech therapist’s prediction came true. Everyone got excited because her reading level was “concerning,” and they were worried about her STAAR performance. I’d been screaming about her reading issues going on five years now. Was no one listening to me?

We got her through the year with A’s and B’s, but her reading STAAR test sucked (and I think the STAAR test sucks, but that’s a whole other post).

On the other hand, she did great in math. Numbers? Great. Letters? Not so good.

“Are we sure this isn’t a form dyslexia?” I asked. Not according to school testing or anything the teachers were seeing. We talked to her doctor. We came up with some possibilities and kept reading, kept pushing forward.

The next year, they wanted her in extra tutoring and classes to help her improve her reading STAAR scores. These “would improve her reading overall.”

They didn’t.

The extra work was so STAAR-focused, it didn’t increase anything except her anxiety and lowered her self-confidence. It didn’t matter that she had all A’s and B’s, that she voraciously discovered anything science-related through documentaries and us reading together, that she prided herself on a being a STEM nerd girl and loved anything STEM. None of that mattered because her reading STAAR test scores were low. As if I didn’t hate the standardized testing enough, this sent it tenfold.

Again, I talked to the school. Dyslexia? Auditory Processing? Alien implant?

Nothing but “just keep her reading.”

WHAT THE HECK WAS GOING ON?

We tried the Learning RX again and it aided her in regaining confidence and improving her schoolwork, which thrilled all of us especially going into the fifth grade, the big year for STAAR.

The entire year, she stressed about this ridiculous test, all the while struggling with reading. I explained everything (again) to her teachers. Explained her history, gave examples, asked when tutoring was offered, what could I do at home. The response was a lot of head nodding and only before-school tutoring, which would be a disaster in the making to get all four kids out the door before 7:00 A.M. I asked about after-school sessions. There were none and no offer to open any.

When she didn’t pass the reading STAAR after a second attempt (surprise!), they suggested she take summer school and take the test a third time.

Other recommendations were hold her back a year (after she made all A’s and B’s) or have her simply take the test a third time without summer school. Because I’d done my research, met with the counselor a few times, and communicated with both her teachers and the Texas Education Association (TEA), I came armed with a boatload of information when it came to the STAAR results “concerns.”

If your child does not pass the STAAR, but passes their classes, you can choose not to hold them back.

If your child does not pass the STAAR, you can refuse to have them take the test additional times.

If your child does not pass the STAAR a second time, you can refuse additional testing, summer school, and/or to have them repeat the grade.

You are the ultimate say on your child’s education and advancement.

Stand up. Fight it. (This can be district dependent, but arm yourself with the information before you go in.)

Put your foot down when your kid’s face has been rubbed in standardized testing enough, especially when you’re not getting answers for the everyday question: Why is she having trouble with reading?

After we declined all of the above and sent her to middle school, the next hurdle was a “strongly suggested” remedial reading course. This would be in addition to her regular reading and English courses and would require her to give up an elective.

“What does this class do for her?” I asked the middle school counselor.

“It helps her with her reading so she’s better prepared for the STAAR.”

Yeah, that was a big, fat hard pass on that class.

I’d done this long enough. I “strongly” explained to them that all the reading courses that were supposed to “help” her read better and were standardized test-focused, had done squat for her long term. “So forgive me for having no confidence in what you’re suggesting. Show me this will help her. Promise me it will give her the tools to read better.”

Instead of arguing with me, they accepted my no, and we scheduled a mid-year re-evaluation of my daughter’s progress.

She stayed in regular reading and English, I worked with her, frequently checked with her teachers on her progress, and helped her where I could while also trying to give her more autonomy because it was middle school.

Push. Pull. Success. Setback.

And then, we got our answer.

After extensive reading and research and with encouragement from a friend who’s a former educator, I had our girl privately tested. Sure enough, she came up glaringly positive.

Diagnosis: dyseidetic dyslexia or surface dyslexia

“Kids with (surface) dyslexia may have particular trouble with words that don’t sound the way they’re spelled, such as weight or debt. They may also take longer to be able to recognize common words by sight. That’s because their problems with decoding can get in the way. Decoding issues keep kids from encountering words often enough to begin to recognize them as a whole.”

VALIDATION!

I sat in the parking lot, called my friend, and cried on the phone.

But the ultimate beauty of having this news was my daughter’s bright-eyed excitement to understanding why reading had been so difficult for her all these years.

“So I’m not _________ [insert any synonym for stupid here]?”

Absolutely not!

At the mid-year conference, I took the results to the school and had my daughter sit in on the discussion. It’s her education. She needed and wanted to be there.

The district dyslexic coordinator had to test her as well. (Of course she does.)

I came prepared again.

Know this: If your child is tested from an outside facility, it doesn’t automatically dictate the diagnosis (depending on the district), but it’s a large piece of the puzzle and should play into the care of your child’s education.

She met the dyslexia requirements. Fourth time’s a charm!

Ta-da! Now when she takes the STAAR test, she can have appropriate accommodations (test on the computer, more time, etc).

Is reading easier with the diagnosis? Not really, but we have an answer as to why she struggles and techniques to improve her fluency. I still get a stressed out eye roll when I ask, “Did you read today?” but boy, is she ever excited when she finishes something all by herself.

Going through all this, I think of parents who don’t know what to do, who accept the test results, who don’t go with their guts that something is off with their kids. Or even parents who simply don’t know how to talk educators and assume they know more about what children need. I think of the parents who are simply so exhausted with trying to make ends meet, they have very little energy to even know where to start. Or those who can’t afford private testing.

This is something they don’t teach in any parenting classes: how to advocate for your child. How to keep coming back when “something is off” or “no, we refuse to rub her face in the STAAR test” or simply “Please help me, help my child.”

My advice is to keep questioning teachers, counselors, and your child. Keep advocating for their best educational possibilities and asking for ways, websites, books, tutoring, and programs that can help.

I won’t lie—it’s exhausting. Even with the diagnosis, I know she’s still going to be frustrated and I’m still going to have to go up to the school and talk to the powers that be about her education and make sure they follow through.

But I also know that, as a parent, it’s one of the most important things I’ll ever do.

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