It starts with a gut instinct. But it’s a long journey from the moment when parents start to feel that something is amiss to the moment when their child is diagnosed with a learning disability or difficulty and finally receives the necessary support and services. Only in hindsight can parents step back and see their experience more clearly — what they didn’t know about a particular disorder but instead blamed on the child’s “underachievement,” how the child’s strengths concealed his or her learning disability, or how the teacher who confidently dismissed the notion that the child has a problem may not have known what he or she was talking about.

In response to the question “Is there something you wish you had known that could’ve helped you, your child, and your family in even a small way?” GreatSchools parents share their stories of struggle, success, and epiphany as they learned to advocate for their children with learning issues. These candid, sometimes heart-wrenching stories provide a road map to the common stumbling blocks parents face when crossing the LD landscape.

Misinterpreting the signs

I wish we had known what to look for very early on, because of the pain we inadvertently caused our son. He tested brilliantly but was unable to retain information. It’s only now, many years later (he’s 15 and has been on meds only since the last quarter of seventh grade), that he can forgive us for the browbeating he got both at home and school. It’s only now that I really understand how we played into his pain because we genuinely didn’t understand how embarrassing it must have been for him to have his vocabulary words and multiplication tables drilled constantly, only to forget them. He once said he felt like the “study monkey” and that everyone “got it” but him. He cried daily because he was being bullied. But he never told us, and we didn’t know what the signs were.

I ache for him now, knowing what he went through. I wish I’d known those signs so I could have stepped in earlier and insisted on the testing and support he eventually received. But it did happen eventually, and we did the best we could. I also wish I’d known that [his condition is] manageable, recoverable. That it doesn’t have to be a life sentence, and it can even be an advantage. Once we learned how to deal with it as a family, and once our son learned how to manage it as an individual, we realized this.

The good news is now he’s confident and truly believes he will remember what he learns. He is even in a debate class as a sophomore, which has helped to build his confidence. Today he can focus, he’s prepared in advance of assignment due dates, and his binder is meticulous — although his room is still a nightmare. — by lrningdiff

I wish I had known that my daughter wasn’t just being stubborn when she wasn’t following my directions as a preschooler, that she didn’t understand what I was saying. I wish I had known that a child can be walking and talking at one year of age and using sentences at age two but still have problems. How many times was I asked ‘How many words does she know?’ What about understanding those words, being able to respond to questions, being able to remember things? Like other parents, I just wish I had known more earlier. I read everything I could get my hands on about parenting before having my first child, and it was so sad that, despite that, I didn’t help her in the right way for so many years. — by Rogomom

The limits of the experts

I wish, now that I too have grown and been educated, I had not thought that the teachers and schools would always have my son’s best interest at heart. Now he is 14 in his first year at an appropriate school for dyslexic children. He has already shown huge leaps just in the first two months! His self-esteem has gone from nearly nothing to that of an almost normal person. I wish I would have listened to my instincts. — by Greg205

I wish I had known the link between slow oral language skills and reading problems — just as others have said. We saw the word-finding problems, mispronunciation, and confusion with irregular verbs, and the experts dismissed it. I wish I had known that schools do not always use reading programs with fidelity. So even if you are getting early intervention using a specialized approach, it may not be given in an effective manner.

I wish I had listened to the teachers’ very astute observations about inattention and addressed the issues earlier. For my oldest, who we just discovered at 15 has some subtle LD, I wish I had stayed on top of her reading fluency, questioned her constant spelling mistakes, and listened to her earlier when she told me she couldn’t stay focused and remember everything the teacher said.

I have to add what I am thankful for: finding organizations and forums with knowledgeable people who supported me along the way, inspired me to keep advocating, kept me from feeling isolated, and armed me with the knowledge needed to effectively advocate. I can’t imagine going through this alone. — by Michella

 360-degree hindsight

First and foremost, I wish I could have shortened my learning curve. I wish I had known where to turn to for the most reliable and credible information. I wish I had known of the need to be an informed consumer, to require that measures and evaluations be objective rather than subjective, and that advice needs to be substantiated based on scientifically validated research and facts, not on the promises of well-written marketing materials.

I wish I had known that a child could be diagnosed with a learning disability and still not qualify for help through the school system, as it stood at that time. I wish I had known up-front that many twice exceptional students simply fall through the cracks, not getting the help they need, because giftedness can mask a disability and a disability can mask giftedness.

I wish I had understood that it is not reasonable to assume that every teacher or doctor has received specific instruction in the diagnosis or interventions required by students with learning disabilities. I wish I had understood that words might be defined differently, depending on whether you are talking with a researcher, a doctor, or the school.

I wish I had understood a parent’s right to request an evaluation for a learning disability at any time and the importance of making that request in writing via certified return receipt and the need to document, document, document.

Finally, I wish I had known earlier these strategies in developing a collaborative team to help my child. — by Dhfl143

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