Lessons Learned

Getting evaluated

When? Don’t wait and see

If your gut tells you something feels different about your child, check it out now. It’s easier to know that your child needs to be evaluated if he’s not speaking in three-word sentences by age three or seems much clumsier than his peers. However, processing problems, early on, can also present as social phenomena-the child who’s afraid to go to the playground because it’s too busy, the child who hates birthday parties or panics at any new experience, the child who is overly ritualized and has to sit in the same seat in nursery school every day. Don’t wait-it’s time to find out. Mothers have an intuitive awareness of behavior that doesn’t follow the usual developmental trajectory. Seriously avoidant behavior (i.e., won’t look at the letters) is often a sign of an undetected learning problem. There’s no downside to getting your child tested. But there is a serious risk in waiting until your child hates school.

Who should do it?

Your child should be evaluated by a trained neuropsychologist or a clinical psychologist with a specialization in learning disabilities. Of course, you’ll hate/mistrust the person who tests your child if they bring bad news. At least be sure you can trust their professional qualifications. Reading problems of disparate origin might look the same on the surface. There is no one dyslexic child. A remediation program must be based on an understanding of the underlying processing issues. A good evaluation should do more than document your child’s problems. It should tell you how the child can learn and offer the most profitable routes to remediating the problem. For example, some children have an easier time taking in information through the visual channel or need a lot of motor involvement in order to remember.

Getting help

Don’t listen to those voices in your head telling you not to do anything

No one wants their child to have problems. It’s a harder life. So it’s natural to pretend that it’s not happening. This pretending takes classic forms:

• I’ll just wait and see-the school says to wait until after second grade.
• My child isn’t interested in reading. He likes sports.
• Getting help will make him feel different.
• Don’t give in to these impulses.

Intervene early

The research is clear: Earlier is better. The ideal time to start a remediation program is between four and seven years. One consequence of delayed identification is that it occurs late in the child’s cognitive and linguistic development, so one might already be pushing the edge of his cognitive flexibility and ability to learn skills. Ten years has been suggested as a breaking point, because there are marked changes in spatial pattern recognition, Braille, and map reading. Others cite puberty as setting limits on language development.

Second, what child would like to continue trying to do’ something that makes him feel stupid? The more you wait, the more he avoids. There’s less social stigma for the child in getting help early.

Third, your child already knows something is wrong, even if he doesn’t have a name for it. Children fear it’s something far worse than a reading problem. Offer help, not false protection. I could not have guessed how early David was aware of his difficulty and how obsessed he was with reading at the same time that he found it impossible. His overtly dismissive attitude covered his pain at being different. Behavior that appeared “lazy” and “disinterested” masked frustrated desires to learn. Did your child want to talk? To walk? It’s likely he wants to read, too.

Don’t tutor your child yourself

Even if you know what you are doing. A child can get another tutor; he can’t get another parent. When he sees the anxious look in your eyes when he doesn’t “get it,” it only makes him want to avoid reading even more.

Choose a tutor with specific training in reading remediation

A reading remediation tutor is not a homework helper or a teacher from your child’s school who will more carefully review classroom material. Dyslexic children need to be taught a different way, using a multisensory remediation program, best offered in a one-on-one setting. The best-researched ones are based on the Orton Gillingham Method or the Lindamood Bell system. You wouldn’t get your car repaired by a salesman on the lot; you’d insist on a mechanic. Your ‘child deserves as much.

A tutor must understand the dynamic context of learning

Usually, the mastery of an adult skill is a source of intense pleasure for a child. Think of catching a baseball or riding a bike. For a dyslexic child, however, learning to decode is a painful frustration. He will try to avoid the anxiety that inevitably accompanies his efforts. A tutor must help the child join an enterprise where the child’s vulnerability will be exposed. Like a therapist, they have to deal with the child’s resistance to learning and act as a scaffold, providing structure and support as well as information. In the beginning, before there are successes to look back on, the child’s desire to try comes from the attachment to their tutor and from a feeling of acceptance and safety.

Choose a tutor you trust

A good tutor is part of your life as well as your child’s life. To face a disability is hard; if your child feels you don’t trust his tutor, he will exploit your unhappiness in order to avoid a difficult, painful task. You and the tutor must be able to stand united and demonstrate to the child that you really want him to continue, despite the hardships.

What you can do

Trust your child’s passions

Lean on them. This is the single most important lesson. It was a surprise to me that the activities David appeared to use to avoid reading included attempts to compensate for his difficulties. Playing helped him manage the trauma of being unable to read by transforming reality in the service of mastery. By relying on his passions, he borrowed the energy to overcome anxiety. The dinosaurs helped him hook up letters and sounds; the maps helped him write, the G.I. Joes helped him remember names and temporal sequences. David had a tremendous drive to learn, but he couldn’t take in information the way it was taught in school.

Let them play

Play is a powerful tool that can be harnessed in the service of learning. For all children, play makes the world smaller, changing what had been experienced passively into something chosen, something owned. Feelings of helplessness are gradually worn away. David’s games allowed him to feel powerful; by identifying with the Joes, in fantasy he could transcend the limitations of his disability. Play, because it is pleasurable, allows the child to generate enough repetition to reliably internalize new information. The repetition supports the development of automaticity at the same time that the decreased anxiety leaves more energy for learning. For children with cognitive difficulties, play creates a potential space where they are free to learn without being humiliated. Play is their passion, a passion that will eventually transfer to their love of reading, which must connect with their emotional life if it is to transcend the narrow mission of decoding.

Don’t just talk to your child

Get down on the floor and play with them. Not just if your child is dyslexic. Forget experts. Children’s play is a language. If you learn to speak it, you’ll know how to make the critical decisions. Then talk to your child. When I first started writing with David, I thought he was unusually articulate about his difficulties. When I started to talk more directly to the children I saw for evaluation, I was surprised how many of them could be equally forthcoming about their difficulties. Perhaps we, as parents, shut them up. It’s an old axiom of therapy that problems that can be put into words will be less malignant.

Read to your child while he looks at the words

Read to your child more. Don’t make him read to you. He will-when he can. Reading to your child is important for two reasons. First, he comes to associate reading with a safe, secure, and pleasurable relationship. Second, hearing the word read to him acts as a kind of priming. Prior exposure to words, shapes, or sounds facilitates the subsequent identification of them from cues or fragments, upping the likelihood that your child will be able to recognize the word when he sees it.

Become a learning partner, not a tutor

Read the books your child is reading. Get videos of the books to help him get to know the characters. Learning disabled children often have a hard time “entering” a book because they have trouble remembering the character names. If the initial entry into a book is hard, they put it down. Previewing the book, making a chart of the names, or watching a video all help.

Provide a predictable, stable environment with a lot of repetition

Because it’s harder for dyslexic children to use language to mediate their emotional states and arousal, they often feel overwhelmed by new situations. Familiarity is a strong preference. Repetition aids the sense of familiarity and safety. It also helps them discriminate signal from noise. If there’s a lot of variance in a signal, it’s harder to understand what’s normal. This pattern is true both in learning phonemic discrimination, but also in being able to understand what their parents want from them.

Get support

Maybe this means joining a support group of mothers of learning disabled children, or going into therapy, or calling your mother every day until she starts to leave the answering machine on-anything that makes you feel less alone. Ultimately, getting yourself support will help your child, because he needs you to act as an auxiliary ego. The diagnosis is a trauma for both parent and child, because the meaning of having a child with difficulty is usually hiding in an obscure corner of the parent’s early development. If you find yourself needing to hide your child’s difficulties, it’s time to look further. Therapy can help hasten the mourning process that must take place before the parent can advocate for their child’s needs. Before a parent can fight for her child-fully-she has to move beyond a denial of the child’s difficulties, mourn a fantasy of the perfect child, and simultaneously accept and detach from the child’s struggles.

The child might also need therapy to learn to encapsulate the learning problems, so that the sense of failure does not spread to a more global self-assessment. Also, the learning problems do bring on other social problems and difficulties with the inevitable increased anger.

Advocate shamelessly for your child

After you’ve done everything else, worked out your own problems, and supported your child, fight for him. No one cares about your child as much as you. You have to educate yourself about the problems, and if you can’t fight well yourself, hire a professional to Make sure the school provides what is needed. If the school can’t offer what’s needed, it’s your right to have the school system pay to have your child educated in a special school for learning disabled children.

Life lessons

You can’t control everything

Sometimes they have to struggle on their own. It can be hard to decide when to give help. However, it’s a short step to doing things for them – a step that might ultimately make them feel more hopeless and defective. Perhaps a good rule of thumb is to attempt to contain the partnership to areas of school learning and to give a gentle prod toward independence in other areas where their anxiety can be reduced enough to offer them mastery of new experiences.

Anger is inevitable

It’s a harder and more complicated job, for you and for your child. You might be better at it than you think. I imagined that David would be better off with a mother who never got angry. Surprisingly, recognizing my own anger helped David see that he didn’t have to falsely cover his own rage and jealousy. He didn’t have to feel like an oddball for being so mad. No candidates for sainthood, we developed strategies to heal after a particularly rough night of blame and disappointment. We repair our relationship when it breaks, learning slowly that anger doesn’t destroy love and that eventually love will tame anger. Far, far from perfect, but “good enough.”

Keep your eyes on the prize

Reading is only one part of life. This is a funny thing to say after having written a whole book on learning to read. However, decisions about schooling have to be made in the larger context of your child’s life-of making friends, of building self-esteem, and of his extended struggle to become his own person. We thought our job was to get him to read, but our real triumph was learning to laugh.

Embrace your limits

Through them, new possibilities will emerge. I never would have wished for David to be dyslexic. It didn’t make him a better person or me a better mother; it made us different, forcing us to grow in ways we hadn’t anticipated. His difficulties also offered me a chance to have a deeply intimate relationship with my son; one I might not otherwise have had. Paradoxically, having a learning disability was the source of David’s resilience. A great self-observer, he has an uncanny awareness of how his mind works. Because the language of a dyslexic child is less “seamless,” there is a more permeable membrane between consciousness and those processes usually shut off from awareness. just as he becomes exquisitely sensitive to the subprocesses and routines that go into breaking the code of the written word, he is alert to other aspects of his cognitive and emotional functioning. These developed strengths remain„ functionally independent of their original source in his fear of humiliation. David is also a fine writer; his access to visual material and imagery gives his words. a directness that my own lack.