GUEST POST: Kathy Herwig---Parent to Parent: 10 Things You Should Know About Raising a Child with Dyslexia

Parents of children with dyslexia often talk about their family’s “journey” or their “story.” This is not an attempt to sound overly dramatic or solicit pity. Raising a child with dyslexia is in fact a journey with ups, downs, and unexpected bumps in the road. Sometimes it feels like you’re all trudging through a dark forest without a compass. Other times it feels like a refreshing hike on a well-marked trail through a sunny fall forest. There’s no official map and there’s a beginning, but no real end, rather a life-long adventure in learning. 

Our journey began in 1st grade when our now middle-school son struggled through reading lessons. His vocabulary was through the roof, he possessed an incredible depth of knowledge in any number of topics, and story time was arguably his favorite time of day. During a parent-teacher conference we learned that he struggled to maintain focus in class, raised his hand more frequently than his classmates, and almost never waited for his name to be called before answering the teacher’s question, or in some cases, blurting out a random fact about something he was particularly interested in, but which may have not been on the agenda for the day. 

He had excelled in other developmental areas: he started speaking early; he skipped crawling and went straight to walking; he could build Lego kits that were designed for older children; and, he was able  remember so many facts that his kindergarten teacher called him a “walking encyclopedia.” He was clearly an intelligent little boy, so why was he struggling with read? 

I also noticed some patterns with his writing. In addition to letter reversals (which alone are not a red flag in 1st grade), he spelled words phonetically, and scrambled some of the letters in words. We brought it up with his teacher who quickly dismissed his patterns as being developmentally appropriate. My gut told me that wasn’t the case. Two of my husband’s siblings had dyslexia, so we decided to dig a little deeper on our own. We took him to a neuropsychologist who performed a battery of tests. Several weeks later we were presented with a diagnosis: dyslexia, dysgraphia, and ADHD. 

This brings me to number one …

1) Trust your instincts. Had we just accepted his 1st grade teacher’s opinion that everything was okay, his dyslexia may have gone undetected for years. Instead, we called an IEP meeting, presented our report, and by second grade he was receiving special education support services in reading and math. We were also able to explain to him why he was struggling with reading and writing, something that came as a huge relief to him. 

Over the course of your journey, you’re going to be presented with any number of opinions, recommendations, and advice. Some may come from doctors, therapists, teachers, and even well-meaning friends, neighbors, and relatives, all of whom may or may not regularly interact with your child. The important thing to remember is that you know your child best. You spend every day together, so you know his struggles and triumphs first-hand. This is not to discourage you from trusting the observations or conclusions of others, it’s just a reminder to process that information through your “parent lens” and take it as one input into a larger of pool data and knowledge you’ve collected over time. 

2) Knowledge is your friend. When my son was in third grade, his special education teacher sent home stack of kindergarten-level worksheets every Friday, the idea being that he just needed to work harder to catch up to his classmates. We went along with her approach and fought our way through that stack every weekend, only to give up by Sunday night, exhausted and feeling like failures. Had we done some research we would have known that those worksheets weren’t going to help. Our son needed a very specific type of reading intervention (Hello, Orton-Gillingham-based reading program!). Instead, we lost months of valuable learning time and fueled our son’s dislike for school.  

Many of us make the mistake of assuming our child’s teacher knows everything there is to know about dyslexia. After all, they’ve been trained for this, haven’t they? Unfortunately, the answer to that is no. Most teachers aren’t formally trained in how to identify dyslexia and even fewer are trained in appropriate remediation. This is not a criticism of teachers, it’s a criticism of our education system. Teachers should have in-depth training in dyslexia and other learning challenges. School should automatically screen all students for dyslexia. This is not currently happening at a large scale in most states. Sadly, budgets, time constraints, and other priorities get in the way of training and leave most teachers without the tools they need address the needs of our diverse learners.   

Your job as a parent of a child with dyslexia is to become the dyslexia expert in your child’s life. This will enable you to advocate for him, better understand his academic and social-emotional needs, and educate those around him. You don’t have to obtain a degree or give up your day job, you just need to know enough to advocate for your child’s academic needs, raise a red flag when something doesn’t feel right (Remember, trust your instincts!), and to be able to collaborate with teachers, tutors, therapists, and other professionals. Learn the signs, the lingo, the appropriate interventions, and your child’s rights. 

3) The “D word” is not a bad word. Some parents are hesitant to get neuropsychological testing (neuropsych testing is needed to officially diagnose dyslexia) because they don’t want their child to be “labeled” as having dyslexia, ADHD, autism, etc. I can appreciate the concern about over-labeling our children and how that could potentially impact how others think of them. But let’s change the lens a bit and think about how you might approach a medical issue, let’s say, diabetes. If you had symptoms of diabetes, would you avoid getting tested for fear that you’d be labeled “diabetic”? Would you simply ask your mother-in-law for advice or treat yourself at home instead of going to a doctor? Probably not. 

From a practical standpoint, a formal diagnosis can provide access to services and classroom accommodations at school. From a personal standpoint, a diagnosis can shed light on many unanswered questions. I’ll never forget the look of relief on my son’s face when I told him he was having a hard time learning to read was because he has dyslexia. Prior to that, he felt like something was wrong with him and that he was a “dummy” (Now, that’s a D word we never want to hear). He was able to understand that he wasn’t any less intelligent than his classmates, he just had a different way of learning. 

4) A good advocate is worth every penny. As you navigate the world of education with your child, there will likely come times when you need support in understanding your child’s rights, particularly with the public school system. The process for acquiring an IEP or accommodations can be overwhelming and confusing. Enter the advocate. A good advocate is well-versed in the language, policies, and procedures involved in accessing services at school. They can also recommend classroom supports and accommodations specific to your child’s strengths and areas of need. The cost for hiring an advocate varies from $0 to $150 per hour and up. Be sure to ask for references before hiring an advocate. An advocate’s experience and background must fit your child’s needs. For example, some advocates are more experienced in legal proceedings while others focus primarily on lobbying for classroom supports. It’s also a good idea to meet with the advocate before hiring them. You will likely spend a lot of time with them throughout your child’s academic career, so a good fit for your family in important. 

5) Teach your child to self-advocate. Whether in the classroom or the outside world, self-advocacy is a skill your child will need to utilize throughout their life. The best way to teach this skill is by encouraging your child to speak up when they need help or when they feel something isn’t working for them. I made sure my son knew some of the key accommodations his teachers were supposed to use in the classroom. We talked about how the accommodations were part of his learning plan and were meant to help him learn. Periodically, I checked in with him to see if his teachers were using those tools. If they weren’t, I encouraged him respectfully remind them. We also talked about how some tools might end up being unhelpful and that it’s important for him to share his ideas about how another tool or approach would work better for him. It may not be easy for kids to speak up initially, so it’s important to encourage and praise them when they do. Once they start advocating for themselves, they will soon see that it’s okay to ask for what they need and that doing so makes life easier. 

Another form of self-advocacy is educating others. I proudly tell people my son has dyslexia. I’ve actually had people say, “He’s so smart. He can’t have dyslexia,” to which I say, “Yes, he is smart. Dyslexia is a kind of learning difference. His brain just processes information differently. It has nothing to do with intelligence.”  I use those experiences as an opportunity to model advocacy. When your child sees you advocate for him, he’ll understand the importance of speaking up and using it as an opportunity to educate others. My son said he wanted to speak to the kids in his school about dyslexia. The idea grew into a dyslexia awareness room at family reading night at his school. I worked on pulling together resources for parents and teachers and he wrote a speech about how dyslexia and ADHD impact his daily life. He was incredibly nervous, but he delivered the speech with confidence and answered questions from the audience. In fact, it went so well, he was invited to speak to a group of dyslexia tutors in another city!

6) The right interventions make all the difference. I trusted my son’s school to do what was right for him. But in the end, they didn’t. I asked for the Wilson Reading Program, but that was not in their plan. We took him to a tutor for a year, and he made some improvements during that time, but it still wasn’t enough. He needed more support in reading, writing, math, and social-emotional supports throughout the day, not just at specific times. Without those supports we were losing an uphill battle and my son’s education, self-esteem, and love of learning were the casualties. 

By the middle of third grade he was in full school-refusal mode. I was constantly being called to school to pick him up because he had a stomachache or fell asleep in class (Hello, anxiety!) or was having a meltdown in the hallway. I had to cut back my hours at work to accommodate this new reality. Our family was suffering, too. Our son was depressed and anxious, we all came to dread Monday mornings, and I tensed up whenever the school’s number popped up on my caller ID. 

When my son was in 5th grade, we heard about a new school that had opened nearby—one for students with dyslexia. We immediately called and spoke with the founder and head teacher at the school. As my husband and I listened to her talk about the school and the interventions they provided, we immediately felt a sense of relief. We had finally found a place where people understood kids like our son. To say that the school has been a lifesaver is not an exaggeration. Though he has his ups and downs, he is in a place with other children who learn like him and is receiving the supports he needs. He’s on the mend and so is our family.  

A full-time dyslexia school may or may not be the answer for your child. Your kiddo may do just fine with some after school reading intervention or even a program you can work on at home. (Remember, you know your child best.) Meet with his teachers, do some research, speak with a dyslexia specialist, then make a decision based on what’s best for your child and your family. 

7) It’s ok to feel loss. I would be lying if I said I don’t feel tinges of loss at times. My son is never going to breeze through a hardcover Harry Potter book (Hello, audio books!) and will never win a spelling bee. Sometimes when we look back at what my son has been through, my husband and I feel sadness, anger, and guilt. When I think about what lies ahead for him, most of the time I feel hopeful, but I also feel anxious and overwhelmed at times. And that’s all okay. It’s okay to feel a variety of conflicting emotions. Learning differences are challenging. If having dyslexia was easy, we wouldn’t need specialized schools and reading programs. Until the rest of the world catches up to the way our kids learn, we’re going to have to MacGyver our way through it—rain or shine—honoring our feelings along the way. 

8) Don’t forget to celebrate the positives. Along with those losses come wonderful positives. Our kids tend to have more empathy than most—they’ve been the underdog, so they seem to know just what to say to make others feel better. They also have superpowers—keen spatial abilities and big picture thinking, creative problem-solving skills, advanced vocabularies, innate artistic abilities—the list goes on and every child with dyslexia has a different set of superpowers. 

We were recently at a museum. My son was fascinated with an interactive exhibit that challenged kids to us a small piece of paper to create a flying craft that would hover over an upward-facing fan. My son was the only child in the group to figured it out. As his craft floated effortlessly, the other kids looked at him in awe and asked, “How did you do that?”. Without skipping a beat, he answered, “My dyslexia superpowers,” and proceeded to show them  how to fold their paper crafts.   

Our kids think differently, learn differently, and see the world differently. Taken out of the context of an education system that operates on a different wavelength, our kids might be considered exceptional thinkers. It’s important to embrace those differences and help your child envision how their superpowers will help advance them throughout their lifetime. 

9) Discover and encourage your child’s success. Kids with learning differences often experience feelings of failure and disappointment. They need your help to consciously build up their confidence and self-esteem. Help your child identify activities that connect with their interests and special talents. My son is not particularly good at team sports, but we wanted him to have some form of physical activity. He loves medieval history, so when I saw a medieval sword fighting class for kids, we signed him up. His depth of knowledge in medieval history (Superpower!) and good spatial awareness (Superpower!) paid off as he excelled in the class and moved up the ranks quickly, building self-confidence and honing his physical abilities along the way. Think beyond traditional children’s activities. Consider your child’s interests and strengths, think about how those might be incorporated into a hobby or physical activity, and encourage your child to give it a try.  

10) A circle of support is a must-have. The people in our immediate circle of friends and family may not be the most supportive when it comes to learning differences. Perhaps a teacher tells you that your child just needs to work harder or a neighbor regularly doles pearls of wisdom like, “My nephew used to have dyslexia, but they got him new glasses so now he’s OK.” I like to think they’re not intentionally being unhelpful, that they simply don’t have the intimacy with the topic I do, but sometimes I can’t help but feel annoyed and misunderstood. Here’s my advice: Don’t look for understanding and support where there is none. Create your own circle of support.  This may come in the form of a therapist, another parent of a child with dyslexia, a support group, or even a Facebook group. Whichever you choose, don’t be afraid to share your story. You’ll be surprised how many people have had similar experiences. Think of them as your lifeboats as you navigate your way through unknown waters.