Whether it’s home maintenance or “family maintenance,” spring is a good time to take stock of our lives, perhaps do a little updating, and plan for the future. For many parents, it may also be the perfect time to begin to address any concerns you may have around your child’s development and progress. In this first of a two-part piece, we will explore how to identify the need for a professional evaluation and what that evaluation entails. In the next issue of Exceptional Family, we’ll focus on your child’s treatment and intervention.
Though this article is intended as a primer for parents new to these issues, parents of children who have already been diagnosed and have even been receiving treatment for some time may also find it helpful. Recognizing that children’s special needs continually evolve with time, it’s a good idea for parents to periodically assess whether there are any new concerns that might warrant investigation.
Step one: Identify the need
One of the first questions I ask new clients is, “When did you first suspect your child might have a problem?” While a child’s challenges may sometimes be apparent at birth, in many cases weeks, months or years may pass before symptoms manifest. Very often, it is the parents who have the first inkling that something is amiss. Maybe the child is reaching developmental milestones much later than expected; or the father begins to notice behaviour patterns that seem unusual; or it could simply be a mother’s instinct – she may not be able to put her finger on it, but she just knows something’s not right.
Conversely, some parents may assume that any quirks exhibited by their child merely reflect his or her uniqueness. While these idiosyncrasies may add to the child’s lovability factor, it never dawns on them that such traits may actually signify an underlying problem in the child’s functioning. In these cases, it’s often friends, family members, teachers, daycare workers or physicians who sound the first warning bell – people who might see the child more objectively, in real world settings where symptoms aren’t masked by parents’ well-meaning efforts or, in some cases, denial. Some parents may be so good at instinctively adapting family life around their child’s needs that the child behaves one way in their presence and another way at school or camp. Oblivious to certain symptoms and behaviours, these parents are truly perplexed when reports of concern arrive home from other settings.
For one of my clients, a complete stranger identified her daughter’s need for an evaluation! Although the mother had suspected her daughter had developmental problems from infancy, friends, family, teachers, and even the child’s paediatrician had repeatedly dismissed her concerns with comments like: “Left-handed children are always slightly delayed, but she’ll catch up”; “You should never compare your child to other children”; and “You’re just being a perfectionist. Relax!” As my client related, one day a shoe salesman asked her daughter – aged nine at the time – how her new sneakers felt. The mother explained that her daughter was incapable of distinguishing whether new shoes felt tight or loose. He tilted his head quizzically and asked the girl to walk from one end of the store to the other. Then he asked her
to run, and then to hop on one foot. He began to casually chat with her about school. The mother held her breath; she knew this was no longer about how the shoes fit. The salesman was honing in on all the problems she’d been worrying about for years. It turned out that he had a special education background and he gently recommended that my client have her daughter tested at the local children’s hospital. She did. The girl was soon diagnosed with a developmental neurological impairment. For my client, the toughest part was when the hospital asked who had referred her for an assessment. “Um…a shoe salesman?”
Whatever the source of the warning bell, the most important thing is not to dismiss those early signs, nor to let anyone else dismiss them, until you’ve explored them to your satisfaction. Upon probing, you may in fact discover that your worries were for naught and that your child is actually developing as he or she should. Every child reaches developmental milestones at a different pace and there’s a wide range of “normal”. It is also possible, however, that doctors and teachers might not have the opportunity to see subtle signals that could lead to an early diagnosis and immediate intervention. So don’t hesitate to take the initiative. If you suspect there may be a problem, better to check it out early rather than wait until symptoms compound.
If you suspect that something is not right, the first thing I would advise is for you to write down anything you or anyone else has noticed about your child that causes concern. Then talk to others who know your child – like teachers or daycare workers. Ask if they’ve noticed the same things, or anything else. Write down their comments too. Record when your child reached developmental milestones, like eating with a spoon, toilet-training, walking, riding a tricycle, speaking in sentences, dressing him or herself, etc. You may think you’ll remember these things, but it’s surprisingly easy to lose track. Also note any family history that might be a factor – is there a relative on the autism spectrum, or one with neurofibromatosis, for example?
Whether your child is ultimately diagnosed with a medical problem that can easily be treated or found to have a developmental disability, you’re going to be the child’s advocate for years to come. Keeping good records will be invaluable in your fulfilment of that role, and the sooner you start, the better.
Rule out medical causes
You are now ready to talk to your child’s physician. When making the appointment, it might be helpful to explain that you have some specific concerns to discuss and will need more time than is usually allotted for a brief check-up. You may also wish to ask if the doctor would like you to fax or email your questions in advance, both to save time and to ensure that he or she understands the reason for your visit. This is an important meeting; you don’t want to have to rush through it.
Your purpose in visiting the doctor is twofold: if a problem is suspected, you need to determine if it is medically-based. The pediatrician might suggest a neurological examination, hearing or visual evaluations. He or she might want to rule out thyroid problems or enzyme deficiencies, or do any number of tests.
If no underlying medical condition is found, but you or the doctor still suspect there’s a problem, it’s time to seek a referral for further evaluation.
Step two: Seek an evaluation
If your child’s problem is clearly identifiable, a direct referral from his or her pediatrician to the appropriate professional could be the next course of action. For example, a child who has difficulty speaking might be referred directly to a Speech-Language Pathologist for evaluation and treatment.
In most cases, however, a broader, multidisciplinary approach may be needed to treat a child’s symptoms. This may entail visiting a hospital or private clinic where an initial screening will lead to an evaluation in any number of fields – neuropsychology, sensory-motor integration, attention or learning, speech and language, auditory processing, etc. – depending on the child’s needs.
If a multidisciplinary evaluation isn’t available, a second choice would be to seek a comprehensive evaluation from a “generalist”, like a psychologist. This would help to hone in on the area(s) where the problem lies, and the psychologist could then refer you to other specialists for additional testing as appropriate.
An evaluation isn’t one fixed test, like a blood test for diabetes. It’s a series of different tests and observations designed to reveal, measure and describe one or more conditions or disorders. The set of tests administered will vary between individuals, depending on their age, the problems they present with, and other factors. The tests may range from more general (getting the broad strokes, identifying problems areas) to specific (designed to examine those particular areas in greater detail).
In the hands of a skilled evaluator, these tests could yield far more information than simple scores. In intelligence test results, for example, the evaluator might recognize that the child is often able to come up with correct responses to questions, but only after the imposed time limit. This may be due to any number of factors, none of which has to do with the child’s actual intelligence; the child’s processing abilities or organizational skills may be weak, he or she may have a tendency to become easily distracted or frustrated, or the child may be fully capable of solving problems in his or her head, but not on paper. All of this information will be useful for parents, teachers and others to learn how best to understand and support the child.
An evaluation constitutes more than just naming the problem. It’s the critical first step in developing a treatment plan. It’s an essential requirement to obtain government or school support. It’s a measuring stick for future progress. It’s a breakdown of your child’s strengths and weaknesses that will empower and enlighten you and your child’s teachers and other caregivers for years to come.
And yes, it also usually assigns a label, which should be no more stigmatizing than any other diagnostic label, like “diabetes” or “nearsightedness”. Many parents and even children are relieved to “finally be able to name it” because the label confirms they weren’t imagining things, the child’s problems did not stem from bad parenting, and the child is neither stupid nor lazy. Having a label is really just a form of shorthand, assuring that everyone will now be speaking the same language in meetings with teachers, caregivers and other professionals. It’s also the best starting point for parents’ research as they seek to learn more about their child’s problem.
Understand the results
Simply having a name for the problem is obviously not enough. It’s important to receive thorough feedback from the evaluator, both verbally and in writing. Typically, the evaluator will schedule a feedback session with parents to explain the findings and answer questions, and will provide a detailed written report. The report should include recommendations for an intervention plan – specific strategies and techniques for home and school – and if appropriate, recommendations for future treatment by other professionals. This is a great deal of information to absorb. It’s important for you to feel free to call or visit the evaluator again, after you’ve had a chance to take it all in and particularly if you have any additional questions.
It’s also crucial to hang on to the written report. It could be the most important document in your child’s records over the next many years. You will probably consult it frequently and may wish to share it, or parts of it, with caregivers and other professionals as your child develops and his or her treatment plan evolves. Think of it as the blueprint for the network of support you are about to build.
Now the real work begins. It’s time to develop a treatment or intervention plan, a process we’ll explore next issue. We will also look at various treatment options and resources, how to build a team, the role of a case manager to coordinate the team’s efforts, and your role as a parent in all of this.
© Harriet Greenstone, MA, OPQ, PhD