Tag Archives: dyslexia

Parents: Is Your Child an In-Betweener?

The In-Betweeners: When There’s No Diagnosis for Your Child13110733_s

What happens when your child is struggling but doesn’t have a diagnosis? It’s so much easier for parents to explain their child to a school, doctor or coach when there’s a label to go with the behavior: “She’s ADHD, please cut her some slack,”  or, “He’s on the autism spectrum, please help him make friends.”

But what about the child who doesn’t make the cut?

Take Carly,  a cute 8 year old redhead with a gap in her front teeth and a perpetual grin. Her mother brings her in to be tested because she just is having a hard time in second grade, but a full evaluation reveals that she does not meet the criteria for any disorder.  She doesn’t have ADHD or organization problems, and she is not lagging academically.  But one thing stands out: Carly is annoying. She talks a lot, laughs too loudly and is bossy.  She’s driving her classmates, teachers, parents, and everyone else crazy.

And then there is Max. Max has an IQ of 82, in the “low average” range. He is slower than most of his classmates, and is also very immature. His peers are starting to outpace him socially.  By age 10, Max is an outcast. He does not meet the criteria for intellectually challenged and he has managed to learn his academic skills with a lot of tutoring, so he is not eligible for any services.  Max is not different enough.

And Maria. Maria is a 6 year old firecracker.  She has tons of energy, is difficult to engage, and is only happy when she’s moving. An exceptionally intense child, Maria is a voracious learner but falls apart when she doesn’t get her way.  Intense? Active? Emotional? Absolutely.  Diagnosis? None.

Carly, Max, and Maria are what I call in-betweeners —kids with challenging symptoms that don’t meet criteria for a specific diagnosis.  Annoying to be around or slower to learn or intense and active, these are types of kids who are challenging to raise and even harder to teach, but don’t meet diagnostic criteria, so they don’t get a label.

Some experts call this phenomenon ‘shadow syndrome’ as in, a mild form of a specific diagnosis but not quite…..  But I prefer to see these children as “the in-betweeners” because it’s a positive term, unlike the slightly diabolical sounding “shadow syndrome.”  In-betweeners are kids who don’t quite fit in.  Their parents have a special set of needs, too.

Why is no label sometimes harder than a diagnosis?

When a child is atypical but does not meet a diagnosis, the parents can feel isolated and at a loss. You know your child is different, and you’re relieved that there is nothing more serious going on, yet it would be so much easier to deal with the difference if there was a label attached. Why?

Labels lead to services.  When your child is diagnosed with a specific disorder, there is usually a designated list of services they are entitled to, either through the school district, regional center or through private pay system.

Labels lead to awareness.  For example, when your child is on the Autism spectrum, you can educate yourself about the disorder.  There are websites, books, support groups, and specialists at your disposal. Having a diagnosis can also help a denying parent be more accepting about his or her child.

Labels lead to understanding from others. Most people now know that having a diagnosis such as dyslexia, ADHD, autism or processing disorders doesn’t mean that there is something wrong with your family.  These are neurodevelopmental disorders a child is born with.

In-betweeners and their parents don’t have these advantages.  Instead, they are subjected to head- shaking and judgment from others who think, “What is up with that kid!” or “These children are just not being parented right.”  As if parents needed more stress!

And with no diagnosis, parents tend to blame each other or themselves for their children’s problems. “What the heck is wrong with this kid? Can’t you discipline him better? We threw out all this money on testing and they didn’t find anything! It must be our fault—probably yours.”

Help for in-betweeners and their parents

Please be patient with me—God hasn’t finished making me yet.

Remember that saying?  It’s a good mantra for your in-betweener, who may outgrow his or her difference. With early intervention, a child can outgrow a diagnosis but retain some aspect of the condition. For example, a child with early sensory integration disorder may continue to refrain from walking barefoot in sand and flinch at hugs, but otherwise be able to socialize with few problems.  A child with an early speech disorder may develop into an excellent speaker but still struggle with spelling (there is a strong link between expressive language and learning to read and spell).  The same is true for in-betweeners—with help, they often can overcome many of their challenges.

On the other hand, some kids grow into diagnoses as they develop.  A child who just seems to be working a little too hard on mastering letter sounds can certainly develop a reading delay by later elementary school.  A child who is just a bit eccentric can look more than a little different by a later age.

In the meantime, there are steps parents can take and advice they can tap.  Determine the diagnosis that most closely resembles your child’s behavior, and use those resources.  Diagnoses are not exact anyway—there is no blood test that correctly diagnoses psychological issues. So based on your own observations, find out what help is available.

Is your child super-energetic? Can’t seem to stop?

Check out ADHD, hyperactive impulsive type. Your child may not meet criteria but the same tactics may help change his or her behavior.  Make sure your child is getting a high protein, low carb/low sugar diet.  Eliminate junk food and artificial coloring. http://www.webmd.com/add-adhd/guide/adhd-diets  This child also needs a strong cardiovascular workout daily.  Limit screen time and increase active play. Mindfulness techniques or yoga can also be helpful. Join the fun and learn new techniques and diet along with your child.

Learning problems but not learning delayed?

Help your child stay on top of his or her academics with enough support. There is no substitute for early intervention; find an educational therapist from the national Association of Educational Therapists  www.aetonline.org  and you can prevent a small problem from becoming an overwhelming problem later one.  Sometimes a retired school teacher or a tutor in your neighborhood can be helpful.

Socially annoying but not on the autism spectrum?

Your child will still benefit from social skills training and social stories.  Social skills training is available in many areas through the school system or privately through therapists or speech therapists.  Social stories is a technique originally developed by Carol Grey  http://www.thegraycenter.org/social-stories  to teach social cues and to better learn nuances of social communication.  Some children will benefit from speech therapy if their pragmatic language seems off, even if there is so specific language disability.

And, so many parents can benefit from the counsel of a  therapist, support group or taking their child for a few sessions of family therapy.  Don’t forget to help yourself through the process of raising an atypical child.

There are lots of different types of “in-betweeners”.   Is your child an in-betweener? Please write in and share your story.

 

 

Advertisements

Parents: Don’t Let Your Disappointment Defeat You

Screen Shot 2013-09-22 at 6.06.00 PMIt’s a taboo feeling you don’t dare discuss: you’re disappointed by your child.

If you are like most parents of atypical kids, you may believe you’re supposed to take your child’s atypical development in stride and be grateful for your uniquely wonderful son or daughter—regardless of the behavioral, learning, or medical challenges you have to deal with every day.

You may think you’re not allowed to feel angry, resentful, or sad.

You may try to suppress your disappointment and condemn yourself because you believe it means you’re selfish and unkind. And you may never, ever talk about your “shameful” feelings with your friends or even your partner.

But denying your feelings can be bad for your mental health and could be dangerous for your child.

A recent study found that children with disabilities are at almost double the average risk for child abuse. How is this horrible statistic possible? One reason could be that parents who do not face their own feelings about their special needs kids are more likely to take out their resentment and disappointment on the children themselves. This doesn’t always mean physical abuse. There are other more subtle ways your buried disappointment may be harming your child.

How Disappointed Parents Take It Out on Their Kids

In my practice as a neuropsychologist, I’ve witnessed lots of parents with myriads of unpleasant feelings that they aren’t ready to deal with yet. Parents may love their children and work hard to get them the best care but often, their unacknowledged feelings get in the way. Here are a few common parental emotional responses to three types of special-needs kids.

Dyslexic child and ‘fix-it’ parent. This is the parent who is accustomed to solving difficult problems at work. He comes home every evening increasingly fed up by his child, who is experiencing repeated failures at school and whose self-esteem is falling. Dad decides to fix it by reading with his child every night, thereby “teaching him how to read.” Before bed. Every night. Dyslexia requires very specific teaching methods provided by trained professionals, but Dad either doesn’t know this or refuses to believe it. He feels angry and unnerved by the apparent failure of his child—he is not used to failure and doesn’t like it. He ends up in my office wondering if his child is lazy and manipulative.

High-functioning autistic child and the socially conscious parent. The set up for disappointment is the child’s lack of social skills. While many high-functioning autistic children are smart in school, they inevitably push other kids too hard, blurt out embarrassing statements in the most inappropriate places (“Mom, my butt itches!” “Look at that fat ugly person!”), or pick their nose during school choir performance. The parent feels humiliated and angry. Parents may be unintentionally gruff with their child, lecture them, or lash out.

Developmentally delayed or low IQ child and high achieving  parent. In a family of high achievers, the arrival of a child who is cognitively delayed almost always causes some disappointment, frustration, and embarrassment. A parent may think, How does he not understand that he is acting like a two year old? Why does he persist in throwing a tantrum…or playing with nursery-age toys…or not understanding what we’re talking about at the dinner table? Parents can descend into sarcasm, anger, or physical punishment, especially when they think their child is doing these behaviors to ‘test’ or ‘tease’ their parent.

You might think these parents must be heartless, but they are not. They are typical parents engaged in raising what they had hoped would be typical children. And the feelings emerge. What to do?

5 Ways to Tackle Your Disappointment, Starting Now

You can’t pretend your way out of disappointment—your child knows you too well. Even a seriously impaired child will inevitably ask the heartbreaking question, “Mommy, why are you so mad at me?” But there are actions you can take today to come to terms with your feelings and learn how to manage them.

1. Be honest with yourself—and then talk about it.

Examine yourself, and be totally honest. Do I harbor anger, resentment, disappointment, or embarrassment about my child? Many parents do—dig deeper if you can’t find it. Remember the cancelled ski trip? The tantrum at the neighbor’s birthday party? Find a confidante and talk about your feelings. (Make sure it is someone you really trust, because this could become fodder for gossip.) Better yet, schedule a few sessions with a therapist. The therapist can guide you toward self-discovery and suggest healthy outlets for your feelings, along with ways to rejuvenate. There are many low fee or no fee therapy centers so it needn’t place another financial burden on you.  But it can help a lot.

2. Find out more about your child’s strengths and limitations.

Many parents are better able to calm their emotional responses after they read a full diagnostic assessment that includes their child’s strengths as well as limitations. Learning more about your child’s condition may help you adjust your expectations, recognize signs of progress, and manage your emotions.  If you are not satisfied with your current evaluation, seek a second opinion. Hopefully, you will be helped by a professional that can offer you more than cookie cutter recommendations and can provide true insight.

3. Every night, think of one thing that makes you proud of your child.

Think about it before going to bed. Remember, you will need to think about that one thing the next day (maybe a lot). I’m sure your child has many things to be proud of. Start thinking about one thing at a time, and the list will grow.

4. Find a support group in your area.

Whether your child’s condition is rare or commonplace, there are support groups for almost everything. Many parents find that learning to commiserate, laugh, cry and share stories is the most healing therapy.

5. Know when to get help.

If you feel that your emotions or your spouse/partner/shared caretaker’s emotions get out of control, or you worry when reading this that you have crossed the red line into abusive behavior with your child, GET HELP NOW. Do not continue to avoid the need to take care of your feelings in order to help your child. Talk with a therapist or start with www.childhelp.org for more information.

Positively Atypical! is dedicated to helping parents stay positive and loving toward their children, themselves and those around them. Please forward this to any parents who might benefit.

Doing some research and helping come up with a prioritized action plan can help you cope with your child's diagnosis.

Chin Up – Diagnosis is Not the End Game!

Doing some research and helping come up with a prioritized action plan can help you cope with your child's diagnosis.
Doing some research and helping come up with a prioritized action plan can help you cope with your child’s diagnosis.

Hearing your child’s diagnosis for the first time is an experience that will stay with you forever. Even if you have long suspected that something isn’t right, knowing it for sure can throw you into a state of paralysis.

It’s a neurobiological response: the enormity of the news temporarily overrides your ability to act or make decisions. Your mind is swamped with frightening questions: What does this mean for my child, for our family, for me?

More families are going to have to confront diagnoses such as ADHD, autism spectrum, and learning disorders such as dyslexia. This is partly because the DSM-5 has broadened the definitions of some disorders, as I mentioned in my last post.

But parents should know that any diagnosis is only a reflection of their child’s developmental process at one point in time. With appropriate interventions, a child who displays a certain set of behaviors at age 5 can be very different at age 15. Or age 25. Children can and do grow and develop.  Keep that in mind as you are absorbing your child’s diagnosis.

3 Steps to Accepting Your Child’s Diagnosis

1. Be aware of your feelings.  Your reactions to your child’s diagnosis are hard-wired, based in the same evolutionary part of the brain that triggers fear when an animal is threatened. If you are initially feeling paralyzed or in denial, it’s a normal response.

Your emotional reactions to your child’s condition will have a big impact on the child’s well-being, so from now on try to be mindful of how you are feeling and how it is affecting your behavior in the presence of your son or daughter.

2. Ask yourself, “Does this diagnosis fit with the child I know?” If what the doctor is saying is not consistent with what you know about your child, something may be off. No one knows your child better than you do.

It’s true that most parents go through a phase of disbelief and denial about a diagnosis, but underneath the denial there is usually a feeling of, Yes, that’s him. He always struggled with language. Or, Yes, his frustration level has always seemed unusual to me . . . He has always seemed like he doesn’t really know how to make friends. . . He isn’t reading and all his friends are. . . .Yes, there is something wrong.

If the diagnosis feels accurate on a gut level, it probably is.

Occasionally, however, the doctors don’t get it right. But most often, they do get it right, but it makes you angry and your instinct is to push back and say “That’s not my kid!”  I will discuss anger as a reaction to having an atypical kid in a future post. But, for now, take a mental note of your feelings and keep alert.

Maybe you wonder if you should  get a second opinion? If you don’t trust your own instincts, seek the opinion of someone else who is frequently around your child—a spouse, grandparent, sister, aunt, neighbor, or best friend. But also please remember that professionals who are trained in diagnosis and treatment have your child’s best interests in mind and don’t give out diagnoses randomly.

3. Take action: Work with your diagnostician to prioritize an action plan. Many children are diagnosed with more than one condition. The parents will receive a list of recommendations that can be 5 or 10 items long and include things like a psychiatrist for medications, an educational therapist, speech therapist, occupational therapist, soccer coach, and family therapy. And you will get books and articles to read as well as recommendations for several ‘cutting edge’ therapies. It’s a lot to take in!

Obviously, parents cannot do all these things at once, and they end up feeling horribly overwhelmed.

So go back to the person who diagnosed your child and ask for a prioritized action plan and a timeline. What is most important? What needs to happen when? For instance, many people recommend tackling intensive remediation during the summer, but you know  that this won’t work for your child. She needs to be outside playing.

Ask the diagnostician to consider the needs of the whole child rather than just writing prescriptions. If the diagnostician cannot do so, you may want to take your results to another therapist or doctor and ask that person to prioritize your plan.

In this blog I’ll continue to give you advice on managing your child’s treatment and —just as important—keeping yourself calm, focused and cared-for during the months ahead.

So, chin up, chest out, right foot forward, you can do this!


Has your son or daughter recently been diagnosed with one of these conditions? How did you react? Tell me your story in the comments — and don’t forget to sign up for blog updates in the sidebar!