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When our son was four years old, we brought him to a neurologist to see if he could diagnose our son’s behavior. From the time our son was a baby, he exhibited physical habits and intense behavioral tendencies, which we knew were not “normal”.  We thought the neurologist would be able to quickly tell us what our son had and the process to help him could begin. Unfortunately, the neurologist discounted our worries and told us there was nothing abnormal about our son. We were told our son had an immature nervous system.  I remember feeling very frustrated as we left his office. We were disappointed with his answer because we knew something was not right.Three years later, we discovered our son had Tourette Syndrome Plus. It took seven long challenging years to determine he was afflicted with TS Plus. When we did realize what our son had, I couldn’t help but wonder why the neurologist (or all other specialists we visited for that matter) had completely missed the mark in his diagnosis. At first I questioned the neurologist’s competency; however the more I thought about it, the more I realized my husband and I were not totally without fault. Today I’m comfortable enough to say that regardless of the neurologist’s competence, we as parents did not gather enough information for the neurologist to accurately diagnose our son’s behavior. And I know this because we didn’t realize how important all of our son’s behavior was for an accurate diagnosis.  We didn’t think our son’s inability to sleep at night might be connected to his jumping and arm flapping. We didn’t realize his obsessive compulsions were in any way related to his rage attacks. And why would we connect his grimaces to his hyperactivity? Tourette Syndrome Plus encompasses all of these behaviors. Yet at the time, we knew nothing at all about Tourette’s. Accurate documentation and observations of all the child’s behavior and habits in his natural setting are essential for a proper diagnosis. And it’s only with thorough documentation that a proper diagnosis can be made. If parents choose to meet with a medical professional for assistance, the degree to which a physician or a specialist can help the child and parents is only as good as the information the parents feed the professional. Once the diagnosis is made, then the appropriate treatment can be determined.But how does one go about ensuring the documentation of a child’s behavior is sufficient and what exactly should parents or caregivers be observing? This can be a difficult and at times, a daunting task for both parents and professionals. It may not always be obvious what needs to be documented. There are a number of steps parents can take to ensure accurate observations of their child’s behavior. The first step is a willingness to take the time to document the child’s behavior as frequently and as detailed as possible. This means writing down how the child behaves throughout the day.  If the child is school-aged or attends a nursery/day-care, you will need to ask the child’s main educator/caregiver to do the same. Although this documentation is just a temporary measure, the more detailed the information, the better the outcome for the child, family and educator.  Generally one, preferably two months of documentation should be sufficient.Two important variables to remember when beginning this process: The first is all behaviors matter. Whether or not the child behaves in a positive or negative way, their behavior needs to be documented. As a parent, you will want to recognize when your child is most at ease because you may want to re-create this environment.  The second important element is the trigger. The trigger is what made the child behave appropriately or inappropriately. It’s important to list the positive as well as the negative triggers to then be able to reinforce the positive ones. Examples of questions you can ask to determine the trigger include: What happened before the child reacted? Was the child provoked? Was the child involved in a stressful situation at home or at school? Are there disruptions in the family life or at work? Break the day into 4 parts to make it easier to document behavior:1)     wake-up till 12pm (lunch)2)     12pm till 4pm (school or day-care ends)3)     4pm till bedtime4)     night time activity It’s essential to write down how well (or not) your child sleeps. Sleep deprivation can have some serious and debilitating effects on a child’s behavior and how he performs during the day.For quick note taking, have a pen and paper in all rooms of the house your child occupies. Throughout the day when you watch your child, write down in point form: a) What’s happening: a brief description of what your child is currently doing (i.e. playing, drawing, etc)b) Who is involved: who other than your child who is in the same room or engaged with your child (i.e. sibling, parent, and yes, don’t forget the pet).c) How your child is behaving (i.e. calmly, excited, aggressively, etc.) Finally, what your child eats and drinks throughout the day is also critical. This may determine allergies and/or sensitivities you as a parent, may not be aware of. Sensitivities and allergies are becoming more predominant than ever before with children. Remember, diligence in gathering the information is of the utmost importance. It requires a lot of effort and focus on the part of the parents however; the end result will definitely be worthwhile.Next month we will discuss what you can do once you have collected the information.

Too often it’s the case where parents chalk up a child’s odd behavior to silliness or intentional mischief. The parent really believes the child is simply trying to annoy them.  But this situation can become very dangerous because it’s quite probable the child cannot stop his behavior. The badgering on the part of the parents may only increase the child’s stress level and anxiety and consequently, their strange behavior. The behavior may be linked to how the child is feeling. If the child is not feeling “right” (and this can mean many things), they may express themselves through unusual behavior. 

I know this because I lived it. For seven long and very difficult years, my husband and I didn’t know that our son’s odd behaviors were all linked to the fact he had Tourette Syndrome Plus.  Finding the right diagnosis can be very complicated and may take many years. In the meantime, the child and all family members are seriously affected.  The child may become the object of an (or many) educator’s wrath and the target of malicious peers. Parents may quickly lose their patience and unknowingly continuously punish their child for something that is totally beyond their control.Over the years I have listened and spoken to a number of parents about their children. Always eager to speak of our families, we share the joy of our children’s accomplishments and the daily challenges we face. As parents, we try our very best to provide our children with the widest range of opportunities to succeed.  It soon becomes apparent however, we spend a disproportionate amount of time expressing our frustrations with our children’s inappropriate behavior both at home and at school.In some cases, parents and educators aren’t sure if what they observe as unusual behavior is truly abnormal or behavior that is considered normal within the spectrum of child behaviors. Most adults including professionals involved with children share a common definition of appropriate childhood behavior.  Parents express their frustration with the lack of parental know-how and resources available to help our children.  Parents speak frankly of the daily hardships they face and hope someone can share advice which has proven successful. Let’s face it, the rigors of our life today can make anyone succumb to odd behavior. Environmental, cultural, and financial (to name just a few) factors outside and inside the home can adversely affect family members. As adults, we have the experience and hopefully, the emotional maturity to find the appropriate way to deal with the daily grind. And although children are fast learners, they are not given the same skill-set we, as adults possess. They express themselves in a variety of ways which can easily be misconstrued.  Many children with behavioral issues are left unidentified or misdiagnosed. A child left to their own devices and not given the support and help they require can be marked for life. In fact, my husband and I have read numerous stories of individuals who grew up with undiagnosed Tourette Syndrome who contemplated and in many cases, attempted suicide.  Some survived, a few didn’t.One of the main difficulties with diagnosing a specific problem is that many of our diagnoses are spectrums disorders which result in a gamut of behaviors or signs and symptoms that can also relate to many other problems. Isolating the proper behaviors for effective and appropriate diagnosis can be a hit and miss adventure. If a child exhibits different types of odd behaviors, who’s to say these are all related? And if one behavior is more intense and seen more frequently than another, perhaps the parent might feel they are overreacting to everything the child does. A perfect example of a difficult diagnosis is Tourette Syndrome Plus. Most people think of Tourette Syndrome as someone having a tic. However, the majority of people afflicted with Tourette Syndrome also have a number of what is referred to as co-morbidity behaviors. This might include obsessive-compulsive disorder, anxiety disorder, ADD, ADHD, depression, sleeping disorder and the list goes on. A parent might notice the hyperactivity and the anxiety but not connect the dots together. When speaking with the family physician, the parents may not speak of the moodiness and periods of depression so much as the hyperactivity and anxiety attacks – only because the latter is so intense and frequent. The other behaviors are just as crucial however in developing a proper diagnosis.And if parents do finally choose to approach their family physician, there are usually a number of issues surrounding a child’s health and behavior on the table for discussion. Proper diagnosis is fraught with problems. The family physician can only provide advice based on the details given by the parents’ observations or the educators’ feedback. And this isn’t always such an easy task for parents or educators. Because children are observed in different environments and the people observing them will focus on various aspects of the child’s behavior, consistency may be lacking for adequate and accurate evaluation.  In next month’s enewletter, I will outline steps parents can take to ensure a more accurate diagnosis of their child’s behavior. Don’t give up! There is definitely hope!! 

Your child comes home with his recess snack uneaten. This is the third time this week his snack remains untouched. You ask your child why he hasn’t eaten his snack and he answers he was not given a recess. He was obliged to stay in the class and finish his work given to him that day. You ask your child to explain in detail what happened so you may be better prepared when you speak with his teacher about this particular situation. Your child denies causing trouble but admitted to needing more time to finish his work than the other students. Consequently, the teacher kept him in at recess to finish his work. You are well aware that recess is considered a health break by most governmental and educational institutions and you believe your child is entitled to a recess no matter what. A child has a right to his recess/health break. Many health and educational governments consider it unhealthy for children to go from breakfast to lunch without a recess or snack. In fact, work is regulated to include regular breaks for health and safety reasons. However, in some cases, teachers will require children to stay in class and miss recess to finish their work as opposed to allowing the child to bring and finish their work at home. If you as a parent feel strongly about your child not missing recess, you can write a note to the administrator/principle stating your position. As a parent, you have the right to request that your child not be kept from recess, lunch or kept after school. You then decide to call the teacher and request an appointment to meet with her. At the meeting, the teacher explains what went on at school. Your child was taking much longer than the other children to finish his work. It was not a question of being disruptive or disrespectful. In fact, the teacher finds your child quite pleasant. Together, you and the teacher look at the workload and try to determine if there is just too much work or if the teacher’s instructions were too complicated for your child. You both agree the instructions were clear and appropriate.If this has ever happened to you or you know of someone who experienced such a situation, the very first action on your part to take is to get your child’s vision tested. All too often such a simple assessment can resolve the entire issue. Regular medical, dental and optometrist check-ups are highly advised. If the physiological aspects can be ruled out, then it is easier to narrow the field of issues dealing with learning difficulties. It is highly recommended that children have annual medical, dental and eye check-ups because they develop at such a rapid pace and their physiology can change quickly within a one-year span.Many children go several years without an eye exam. It’s quite possible your child may suffer from two-plane vision, which means he does not have a three-dimensional view but rather sees just two planes and directly in front of him – just like horses. If undetected, this visual problem can lead parents and educators to think there is more than there really is.  A visit to the optometrist is really quite essential for children during their development years and may quickly solve the issue. If your child’s eye vision has been verified and everything is fine, the next step you can take is to look for children’s treatment centres located near you or ask for a referral from your family doctor. Children’s treatment centres are composed of highly trained professionals who assess various aspects of children’s development and growth; from speech pathology to how well a child’s brain processes information.  Once a child has been assessed, they can provide you with the expertise on how to deal with the situation at home and at school. Professionals from children’s treatment centres also work with schools making your child’s life and your own that much easier. Sometimes simple solutions are all that are required.