My daughter was diagnosed as dyslexic at the end of second grade. Since then, I've had countless conversations with other parents processing similar news. They find me through word of mouth, I'm often the first non-family member they've discussed it with, and over and over again I've shared the small but important pieces of wisdom I've picked up in the last three years. My advice has less to do with how to treat the learning disability -- that's for experts -- and more to do with how you, as a parent, can best serve your child. Some of this advice is intuitive, but a surprising amount isn't. In the hopes of helping more parents negotiate their own reactions to a dyslexia diagnosis, here are my top five pieces of advice.
1. Don't panic.
Chances are that you and your spouse or parenting partner, if you have one, are freaking out right now. Receiving a dyslexia diagnosis can be a shock, and even if you suspected it, this news is at best an unwelcome confirmation. Also, the official diagnosis usually follows several years of escalating school difficulties that ratcheted up your fears and anxieties for your child. As her classmates began to read, she did not, or did not as quickly. When homework started, his violent tantrums seemed far more extreme than his peers' protests. The good news: a definite diagnosis means you've already jumped a huge hurdle by getting an evaluation scheduled and completed. Now you have confirmation there is an underlying issue, it has a name, and you can get down to tackling it as a family.
2. Don't be mad.
This applies to familial relations as well as to your attitude towards the school and/or teachers. It's natural to want to blame someone for this turn of events, so chances are you're furious at your spouse or the school, or both. Why didn't the school flag the problem earlier? Why did they insist we hold her back a year? Why didn't my spouse agree to the learning disability evaluation earlier? The underlying anger is more general: Why is this happening to us?
I can't emphasize this enough: although it's normal to be angry, you've got to get hold of yourself, and quickly. No one will benefit from your fury, especially not your child. Your anger may come from love and fear, but if you really want to help your child, you will find a way to swallow your bile and redirect your energy in a positive direction -- you'll need every bit of it. You can start by burying the hatchet with your spouse.
3. Do find allies.
One of the things you may be angriest or most disappointed with is your child's school, for the reasons mentioned in no. 2. Some schools will let a slow reader go for quite a long time without suggesting a learning disorder evaluation, for example. Many parents approach their initial meetings with the school either defensively or aggressively, but I assure you neither stance will serve you well. What you need desperately right now are allies. And the first and best place to find them are ... at school. I always tell parents that we, too, were upset and frightened when our child was diagnosed as dyslexic; one impulse was to turn on the school and blame them somehow. Thankfully, we received this excellent advice: treat the school as your ally. Tell the teachers how grateful you are for anything they can do to help your child. Assure the school that you want to do everything you can to support them in their efforts. Even if you have to fake it till you make it, building a positive relationship with the school will stand you -- and more important your child -- in good stead, whether or not you ultimately choose to remain in that school or seek a different learning environment. Remember: you want to make that decision, not have it made for you.
Another essential place to turn for support is an outside tutor, which you will likely need unless your child attends a school specially geared towards learning differences. It's really important to find a tutor who is trained specifically in dyslexia remediation, such as Orton-Gillingham or PAF. A tutor who can communicate effectively with your school is an added bonus, but it's most important that they communicate well with you and with your child.
Finally, you can find online groups and resources to help guide you as well as remind you how many parents and students are dealing with dyslexia. Everyone Reads is one group, The Big Picture is another, and so forth. I've always found speaking with other parents of children with dyslexia and different learning disorders incredibly helpful, even informally. Discovering that there is a learning disability which is the mirror image of dyslexia--children who read early and fluently yet retain no information--was both fascinating and reassuring to me. Talking to others will educate you as well as soothe some of your fears.
4. Do stay positive.
There are many people and places you can call upon to help with this. In addition to the resources mentioned above, dip into the many articles and studies that connect dyslexia with strengths and abilities. Watch the documentary "The Big Picture" (with your child, if he or she is old enough) to hear amazingly bright, articulate people talk about living and even thriving with dyslexia. If nothing else, it will cheer you up to know that David Boies, Charles Schwab and Richard Branson all struggled with dyslexia.
When it comes time to share the diagnosis with your child, be aware that he will probably take his cues from you. If you break the news as if it's a bad thing, he will also view it that way. But if you can be neutral about the diagnosis, or talk about it within the framework of a proactive plan, your child may actually be relieved to have an explanation for all the troubles she's been having in school. Putting a name on the problem as well as drawing a clear distinction between intelligence and learning style can be a very positive development for both of you.
5. Do your homework -- and make them do theirs.
The work of an outside tutor or a special educator within school is essential to teaching your child how to read, to organize her thoughts, and to tackle the tasks that are more challenging for dyslexics. But you can't outsource all of this. You may not be an expert in dyslexia remediation, but your input is critical to that work's success. By helping your child stay on task, do regular reading practice, and power through even the roughest evenings of work, you are being his best ally. When we began working with our tutor in second grade, she told us, "Your daughter has to do this work every day. She can have one day off a year: on her birthday." I do believe that by sticking to this punishing routine, at some personal cost and through many tears, we helped her learn to read and set her on a more positive learning path. Don't slack off now because you're relieved someone is sharing the burden with you. No one, ever, will advocate for and push your child the way you will, and you are a critical part of his or her future success.