Special needs misadventures

Deb posted: “I’m wondering if you can guide me here. My 8 yr old son with mild-moderate special needs was having regular behavior problems at school and was up for a 3 yr reevaluation though the school. After a thorough private neuropsychiatric evaluation we were sent to another psychiatrist to rule out some of the neuropsych’s concerns. This Dr did rule out the concerns, asserting different ones in their place. Upon seeking another opinion because the two specialists’ assessments were so different, we received yet another ‘suggested’ diagnosis. The only point these specialists agreed on was that my child needed intensive therapy (4-5 days/week) and medication, although they could not agree on which kind and what for. Amazingly enough, during the period of time that we met and were evaluated by these specialists my son ‘remembered how he was supposed to behave’ and almost all of his problems at school disappeared. So my question is, at what point should a parent stop seeking out additional opinions in hope of finding some consensus in evaluating their child’s special needs? I want to give my child every support possible to be successful but frankly it’s often hard to remember why we went through all the testing in the first place. Can you offer some guidelines for how much is enough?”

This is a fair but tough question—I don’t really have enough information to speculate on what kind of problems Deb’s child is having, or what kinds of diagnoses or treatments would be appropriate. But it does raise the question of how to approach children with special needs and learning difficulties, and Deb’s post illustrates a frustration many parents have felt when trying to get help for their kids.

Part of the problem lies with the very nature of psychiatric diagnoses. In other realms of medicine, a diagnosis is made firmly on fairly objective data: take a history, ask about the symptoms, do an exam, maybe some tests—viola, you’ve got a diagnosis, or at least a very likely stab at a diagnosis, and treatment follows logically from there. The psychiatrists have tried to codify and objectify their diagnoses, too, in a huge book called the Diagnostic and Statistical Manual of Mental Disorders, or DSM, now in its fourth edition. To have “Attention Deficit Disorder,” for instance, you have to have 6 of 9 listed characteristics along with four required features. The DSM is an effort to make diagnoses in the realm of mental health standardized and objective, so practitioners are more clear and precise.

But in issues of mental health, especially in children, over-reliance on the DSM tends to oversimplify problems. It shoves kids into little boxes with clear labels on them: this one has ADD, that one has expressive language disorder, this other one has autism, this one has a processing disorder, etc. But in my experience many kids who need extra help in school have a combination of many features of each of these problems, and every one of these kids is unique. The labels themselves can become a distraction, forcing children into loops of expensive testing and diagnostic pigeonholing that doesn’t really help delineate exactly what kind of help would be best for the individual child.

Complicating matters further: children change and develop. A child who seems to mostly have problems with speech and language may later on have more problems with memory. And health and social circumstances can certainly have a big impact on a child’s success. If obstructive sleep apnea is preventing a good night sleep, a child might have symptoms identical to Attention Deficit Disorder; a child who’s being bullied may retaliate and be labeled with “Oppositional Defiant Disorder”; a child with a hearing deficit may seem autistic. Performance on testing to help determine a child’s diagnosis may depend on the rapport developed with the psychologist, and may be influenced by how well the child slept the night before and what was had for breakfast. A very good psychologist can work through these complications, at least most of the time. But it’s tricky.

So what’s a parent to do? Concentrate on what’s holding your child back, right now. Is it learning, or remembering? Conduct? Attention? Handwriting? Speaking? Getting along with others? All of these skills can be reinforced and tutored. As children grow, expect their strengths and weaknesses to change, and reassess how things are going and whether specific therapies are still leading to measurable, significant, and important improvements. If input from testing doesn’t make sense, don’t automatically accept suggestions. Even if you do follow a new course, reassess whether there really has been an improvement before continuing long-term. A certain amount of trial-and-error is unavoidable, but don’t feel locked into any sort of therapy that just isn’t working.

I like to think that a pediatrician can help get to know your child well, and hopefully provide guidance and a good objective viewpoint as parents try to digest these sorts of decisions. Our job is also to stay alert for medical conditions that can affect school performance and behavior.

I know some of our regulars have special needs kids—I’d love to hear from parents about their experiences with these problems, first hand.

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2 Comments on “Special needs misadventures”

  1. Allison Says:

    Dr. Roy, your response was appropriately non-committal, since there is no definite answer! 😉 For my son, we went through three other evaluations before we finally hit on the evaluation that I believed, in my gut, nailed what was going on with my son to a T. And in retrospect, it did. So my gut was right.

    Since this area is NOT an exact science, I really encourage parents (and moms, mostly, no offense to the dads out there, but mom’s intuition is usually better than a dad’s in these areas) to trust their gut instinct. YOU know your child best — you see them at their best and at their worst. You usually get a feeling whether a clinician “gets” your child. That’s the one I would stick with to have periodic re-evaluations and to go to with questions and concerns.

    As far as your child “deciding” to behave correctly, that’s common for children with disorders such as ADHD and autism. But it’s hard work for them to behave “correctly,” so you’re likely to see ups and downs when it comes to behaviors. That’s why it’s SO important to have a good BIP (behavior intervention plan) in place in school, and have all his teachers on board with implementing it faithfully. Even if he seems to be ok right now, have that BIP in place so that, when his behaviors do become a factor again, the school will be forced to work on the behaviors with him, rather than punish/suspend him for them.

    I hope this helps, and good luck!

    Allison B. Vrolijk, Esq.
    http://www.vrolijklaw.com

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  2. Cheryl Krichbaum Says:

    I’m a parent of a 5-1/2 year old who was “diagnosed” with Autism Spectrum Disorder just over a year ago by the school district, and I have been very happy with the school district’s work. We do not have a medical diagnosis because we haven’t needed one so far. The school’s assessment and IEP have worked for my son.

    My son is considered high functioning, and when I read about Asperger’s Syndrome, that label seems to fit. However, I have also read about “hyperlexia,” which is a label for kids who read really early. My son started reading when he was 3-1/2. Kids with hyperlexia tend to show symptoms from many other labeled disorders–and of course each kid is different. Those who write about hyperlexia say that kids will grow out of the symptoms, showing that they are not truly Autistic or ADHD or whatever the diagnosis. That is starting to show itself as true for our son.

    We are in the process of relocating across the country, and I’m learning that our school district’s Autism support is far above where we are going, so we may be pursuing a medical diagnosis in order to get the services that we need.

    I say that you should pursue diagnoses until you find one that YOU think matches your child and gets your child the services that he or she needs.

    You see your child far more often than doctors or teachers, so you have to be part of the team who “diagnoses” your child. Get educated yourself and go for help until you get the help that you need.

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