Read the Child not theTextbook

Being gifted doesn’t always seem like a gift……In reading this and some of my other posts you may question why I would not wish my child to simply be a “normal“ child.

By the time I sought out help I was at a desperate stage. That’s how most parents are when they first meet with the Director of my son’s new school. The parents have since happily shared the story involving a home visit by the Director. When the visit was over and the door was closed, the mother burst into tears, as I did myself. It was a relief (an understatement) to find that there was another person on this planet that understood my child and actually liked him!

My child knew when he was understood. The Director did not classify his excitement and high energy as hyperactivity, his frequent need to move as not wanting to listen or pay attention, his strong emotions and sensitivity as immaturity, his constant questioning as annoying and impulsive and his independence as oppositional.

Prior to this we had visited my son’s pediatrician to undergo a whole panel of allergy tests. Here I learnt that you have to take your own diagnosis to the pediatrician, ask for the tests you want and keep persevering if you are not happy with the answers you get. I learnt that even if my child is not allergic to dairy it does not mean that he is not lactose intolerant, and the same goes for wheat. He is not allergic to wheat but has less stomach problems when he eats less gluten and wheat related products. Diets free of diary and wheat can benefit children like my son. It helps not only with physical symptoms (lots of stomach aches) but I believe it modifies certain behaviors.

A psychologist also recommended ruling out anything physical by taking him for an EEG (Electroencephalogram). It’s an outpatient test that records and measures the electrical activity of the brain. Certain conditions such as seizures can be spotted due to spikes in the computer readings, although my son had never exhibited any signs of epilepsy.

By the time my son had endured all of these procedures he had turned sullen and had become more lost and unreachable. He was distracted in pre-school, hyperactive and extremely oppositional at home.

Children are being labeled with inaccurate diagnoses because of the general lack of awareness of giftedness, its characteristics and the frequent mismatch between the child and their school environment. Most of my child’s behavioral issues comes from his sensitivity to the environment, his intense reactions and his developmental asynchrony (especially being a big kid for his age, people tend to assume he is older than he is which just amplifies the problem). My son’s typical gifted behaviors mimic a number of other conditions. Misdiagnosis of ADHD, obsessive-compulsive disorder and oppositional defiant disorder are among the most common misdiagnoses made based on these behaviors. Professionals believed at some point along the way that my son could fit into the category of any or even all of these. My child also suffered from anxiety and depression due partly to an inappropriate school environment, frequent peer and sibling rejection and even being misunderstood by me and my husband! These symptoms were diagnosed correctly but the underlying stressors were not recognized and treated until later when I realized he was a gifted child and became familiar with typical gifted children’s issues.

I would encourage anyone who knows or works with children exhibiting these types of behavioral issues to be aware of the pitfalls of misdiagnosis and to not leap to quick conclusions. With more care at the diagnosis stage we might hope to avoid damaging labeling, medication side effects through wrong prescriptions e.g. over use of Ritalin as a “quick fix”, inappropriate counseling/therapy and inadequate intervention.

Having found what I believe to be the correct diagnosis for my son, I have learnt effective strategies for nurturing sensitivity and for dealing with intensity and perfectionism, and for helping him identify his own emotions. I have learnt to understand how my child thinks and processes, how he can and cannot express himself, and what is needed in his environment in order for him to thrive.

I would not want to change my child into a “normal” child. I am just as proud of him as my other two “normal” children. He has taught our family many things that we would never have known had it not have been for his “differentness”. Because of him we are able to move forward more solidly as a family. There is immense power in being different with unique ideas and perspectives. I hope my child can find courage to be who he is, and to offer up his unique contribution to the world even if the world sometimes fails to understand him……..It’s what the world needs.

A Quest for Peace of Mind

It’s been a difficult year. It’s been hard to keep smiling even on the outside. I did not expect raising children to be so hard, especially my gifted son. It consumes more than your money and time, it worries the life out of you and before you know it you’ve turned into an anxious wreck of a person that can no longer string a reasonably sensible sentence together or even cope with the smallest of setbacks. I worry because hindsight is a wonderful thing and I can say “oh, now I get it, everything has fallen into place” which is great, but then you wonder what else there is that you are doing wrong or should have picked up on earlier, like my son’s depression. When my child was born I counted his fingers and toes and everything was there where it should be so I breathed a huge sigh of relief and never stopped to think about what was bubbling away beneath the surface.

I’m a glass half empty sort of person, so this doesn’t come easy for me to say, but I’m relieved that I finally found my diagnosis and I’m glad. I don’t have all the answers and it’s likely that I never will, but it’s easier to fight if you know what you are up against. Once I knew that there were certain behaviors that were beyond my child’s control I had to change my mind set and I had to persuade other people to as well. There is no point in expecting from him what other children his age may be capable of, especially social expectations; they can be too high for my child. He has a lack of empathy because he is an Asperger’s child. He doesn't seem to notice or care if he hurts someone either physically or verbally (not usual for Asperger's). He says what is on his mind. Most schools try really hard to accommodate different ‘skill sets’ but it helps them if the child participates and gets along reasonably well with their peers, some social skills are required for that. It is hard for an introverted gifted child to do something that is as unnatural to them such as standing up and speaking to an audience or working in a group with non gifted children. My oldest (typical) child tries hard to please other people, especially her teachers. She tries hard to conform and fit it. My gifted Asperger’s child wouldn’t know how to, even if he wanted to. He knows he is different.

What had an effect for my child was moving him to a school for gifted and talented children. I was lucky enough to have this opportunity; I know it is not available to all. It is a school led by renowned experts in the field of K-12 education. The school focuses on creative teaching methods including hands on activities and differential learning. They use the constructivist approach to teaching and learning. Generally this means students conduct experiments and real world problem solving to build on their knowledge and then reflect on it and talk about how their understanding is changing. The students are active creators of their own knowledge, by questioning themselves and their beliefs and making readjustments as necessary. The faculty acknowledges that along with giftedness may come other things. This group of children has unique requirements and the faculty understands and can manage the symptoms. Subjects such as Social and Emotional studies are as important for these children as Math and this is part of the curriculum at my son’s new school.

There is no “silver bullet” and I cannot say that things will get better quickly or at all. After all, there is no “cure” for Asperger’s. Focusing on the gift is important and this requires the appropriate teaching. Renowned and successful individuals such as Mozart, Albert Einstein and Thomas Jefferson are said to have had symptoms of Asperger’s (although no diagnosis was available at the time). My wish for my child is that he will learn about his own strengths and weaknesses, learn how to check other people’s faces to see how they are responding, and eventually find a comfortable way to navigate his journey through life.

Making Sense of SPD

I tried to write my own checklist or questionnaire to enable other parents to check their child’s symptoms and to decide whether they may have a sensory processing disorder. I could not write it better than on the Sensory Processing Disorder.com website. It is the most comprehensive list that I can find of all the behaviors that may be exhibited under each sensitivity/category.

When I was told that my child may have some sensory processing problems, I did as much research as I could. I printed out the checklist, filled it in, studied the results and kept it around to refer to and maybe even checked a few more boxes when I realized that he was actually exhibiting some of the behaviors on the list that I didn’t think meant anything when I looked the first time; things such as, cracking his knuckles or the occasional head banging. I’m not sure why I didn’t think that the head banging was important, I think it’s just that he only did it occasionally. However, the times that he did, the circumstances were very similar.

The checklist helped me to really understand and anticipate his behaviors. I knew not to take him to the mall at the weekend. However, if it was absolutely necessary, I found that making a list of what I needed to buy and only concentrating on that shortened the time. Taking plenty of my child’s favorite snacks gave him something to chew on and focused his mind. The bribes or treats thing at the end never really worked. If the noise or lights bothered him he was going to act up whether he got his treat for ‘being good’ or not. He couldn’t help his reactions, ‘being good’ was asking the impossible here; his environment was painful for him so getting a treat was irrelevant. It would be the equivalent of telling an adult not to scream if they trapped their fingers in the car door.

My child dislikes hair brushing and nail cutting so I find that if I do it while he’s watching TV it doesn’t bother him as much. I even clean his teeth sometimes in front of the TV, not just because he complains less about the physical act of cleaning, but also because if I’m running late we don’t have to go through the whole countdown thing to help with transitioning. “In 10 minutes we are going to clean our teeth” “In 5 minutes we are going to clean our teeth” etc. It’s not a solution but it makes life easier.

I learnt that if my child is sensitive to something, say he doesn’t like his new sweater, he says it’s uncomfortable, and has got distressed about it and he doesn’t want to wear it, his other senses will be heightened too. He sits in the car on the way to school clearly bothered by the sweater, pulling at it, but also complains about his siblings making too much noise or the sun shining through the window.

Sometimes if he gets so distressed with his environment and is bothered by the noise/lights/close proximity to others/waiting in line such as at the mall, he has trouble regulating his body temperature, so will usually feel cold even in hot weather. Consequently, I always make sure I carry a sweater for him; he likes one with a hood, where he can hide away.

There is always a reason why my child does or doesn’t do something outside the obvious explanation. Because of his young age of 5, he doesn’t always understand why he is feeling the way he does. He also finds it very hard to talk about his feelings. Not understanding his emotions means he cannot compensate for them. To give an example, one Saturday night we were eating dinner in the kitchen (a smaller, brighter lit room than the dining room) we had extra guests and we were all laughing and joking, kind of fooling around rather loudly. My child decided halfway through the meal to pick himself up without saying anything and walk away from the table to another room and put on the TV. At first, you may think that he was being rude, perhaps disrespectful and what about eating all of his dinner? I realized that I had missed the obvious signs; he had gone very quiet (he could not concentrate on the conversation), from time to time was touching his ears to block sound and was squinting to avoid the lights. It was distressing for him to be in that loud, brightly lit environment, in close proximity to people and consequently the noise. To exasperate his sensitivities he did not understand the humor. However, sensory defensiveness does not account for all of his avoidance behaviors, not understanding humor at the dinner table, or his resistance to engage in tasks that are not interesting to him, are not due to sensory regulation issues.

For my child, his difficulty regulating sensory input can lead to an overly stimulated and more disorganized state. Think about it, if you were anxious, nervous or didn’t like to be around people on a particular occasion, maybe your shoes hurt your feet or your pants were too tight after a big lunch, you may have become uncharacteristically silent or very talkative, probably on edge and certainly keen to get home. My son generally becomes intolerably loud, climbs, jumps, even laughs. He does not cling or cry.

It has taken me a while to understand this. It has taken a while for other people who come into regular contact with my child to understand this. It is not easy to understand. The question is how do you truly know when he is having difficulty managing his sensory input and when he is just being a 5 year old boy?

The Five Senses: Vision, Hearing, Smell, Touch, and Taste.

We can recognize a friend instantly. We can recognize thousands and thousands of smells and distinguish millions of shades of color. We can feel the lightest touch of a feather or hear the faintest sound of a bee buzzing past us. It seems so effortless, we don’t even think about it. Yet everything that we hear, feel, see, taste or smell requires billions of nerve cells to flash urgent messages through cross linked pathways and feedback loops in our brain.

I learn't that many children with Asperger’s syndrome, who are bright and capable, can have difficulty managing their sensory input. Like my son, they may be unable to go to the movies or a parade, sit through a show, or go to their friend’s birthday party. I discovered that my child has a number of sensory processing difficulties and these impacted his daily life. I discovered that with children who are gifted and those with ADHD or Autism, the prevalence of Sensory Processing Disorder (or Sensory Integration, as it is sometimes called) is much higher than in the general population.

So what exactly is it all about? Here is a definition from the KID Foundation (The Foundation for Knowledge in Development, now known as the SPD Foundation), which specializes in research and treatment of Sensory Processing Disorder:

Sensory processing refers to our ability to take in information through our senses (touch, movement, smell, taste, vision, and hearing), organize and interpret that information, and make a meaningful response. For most people, this process is automatic. We hear someone talking to us, our brains receive that input and recognize it as a voice talking in a normal tone, and we respond appropriately.

Children who have a Sensory Processing Disorder (SPD), however, don’t experience such interactions in the same way. SPD affects the way their brains interpret the information that comes in; it also affects how they respond to that information with emotional, motor, and other reactions. For example, some children are over-responsive to sensation and feel as if they're being constantly bombarded with sensory information. They may try to eliminate or minimize this perceived sensory overload by avoiding being touched or being particular about clothing. Some children are under-responsive and have an almost insatiable desire for sensory stimulation. They may seek out constant stimulation by taking part in extreme activities, playing music loudly, or moving constantly. They sometimes don’t notice pain or objects that are too hot or cold, and may need high intensity input to get involved in activities. Still others have trouble distinguishing between different types of sensory stimulation.

Research by the SPD Foundation indicates that 1 in every 20 children experiences symptoms of Sensory Processing Disorder that are significant enough to affect their ability to participate fully in everyday life. Symptoms of SPD, like those of autism and most disorders, occur within a broad spectrum of severity.

An important thing that I learnt from Out of Sync Child (see my recommended reading) was that a child with a sensory dysfunction does not necessarily exhibit every characteristic of the disorder and can be both over- responsive and under-responsive. For example, my child can over-react to unexpected loud noise and will cover his ears with his hands. He is also a sensation seeker and is constantly hanging upside down on the sofa and fidgeting almost all the time. Also, the child may show characteristics one day but not the next, which can be very confusing as a parent. One day my child is covering his ears because we are all talking so loudly but then he walks over and turns on the tv with the volume high. Inconsistency is a hallmark of every neurological disorder.

Sensory Processing?

It was 2004, my daughter was 3. Blissfully ignorant, I could not understand why parents found it so hard to parent: all the mother’s meeting in parks or coffee shops discussing everything from ways to get their child to sleep through the night or eat more than just goldfish and string cheese to comparing their development: whose child was sitting, crawling, walking or babbling first. I couldn’t understand what was so complicated about it: that was, however, until my son was born.

I began to think it was just my inability to cope with a second child or that boys are just more difficult than girls. I thought that I did everything so well the first time around I couldn’t figure out why my ‘skills’ weren’t working so effectively this time.

My baby cried – a lot! To be more specific, he cried when he left the house and went outside. He cried until he returned home. In fact, when he was 3 months old I took him on a 12 hour plane journey to show him off to extended family and he did not stop crying until he returned on the 12 hour plane ride 3 weeks later. So much for ‘showing him off’! I still remember frantically pushing him in the stroller around all the parking lots, trying to calm him, while the rest of the family, my oldest child included, visited the zoo, park or restaurant. Back home, I counted endless occasions when we had to leave a full shopping cart in the grocery store unpaid for, when we had to leave another child’s party before the candles were blown out or when he just screamed all the way through the trip to the mall. Each and every time, I said “never again”.

To his credit he was reliable and adventurous with food. He ate 3 meals and 2 snacks a day at precisely the same time every day. He very easily began to love all fruits, vegetables, meats and fish. I was so delighted that he took such an interest in food that I spent every morning in the kitchen cooking and puréeing fresh fruits and vegetables and bagging up small portions to freeze. As he got older I added meats and fish and made casseroles and pies. I’d never spent so many hours in the kitchen in my entire life and he never left a tiny morsel on his plate. It was so satisfying.

He also knew faithfully when he should sleep and nap. He liked to be swaddled tightly as a young baby and then when he was older he graduated to a sleeping bag. His sleep pattern was remarkably regular, going to sleep and waking at precisely the same time every day.

It was only when he was 3 years old that I began to notice other, more disturbing, consistencies in his behavior. He was always turning off lights and one day when he got a new pair of cool shades he wore them all the time, even inside, at first I thought it was just because he liked them. Then he started to become really distressed when he was in an environment with bright lights. I began to wonder why he cried or covered his ears with every loud sound, why he didn’t like me talking to someone even 15 feet away while he was concentrating on another task. Crowded places bothered him so much that it usually led to major meltdowns in public places.

At the age of 4, he didn’t like to be touched. He didn’t seek out hugs or cuddles from his parents. His younger baby sister could simply brush gently past him and he would lie down on the floor crying inconsolably as he tried to rub off his skin where she had touched him. He also took an instant dislike to certain pieces of new clothing claiming them ‘itchy’ or ‘uncomfortable’. The experience of simply ‘trying them on’ would leave him crying hysterically.

At the age of 5, a once keen observer, he became an excessive risk taker: jumping, crashing and climbing, without regard to his or anyone else’s safety. His food choices began to narrow until he would eat just a few things. What were once his favorites now became his most detested. Worst of all for me, and him, was that it began to take hours to settle and calm him enough for sleep. He was pale and eyes dark but he still claimed not to be tired.

It had become almost impossible to understand and to cope with. Was it just a phase? Did he simply need more discipline: was he testing the boundaries? Was it my fault, was I letting him control me? Surely, it couldn’t be so easy to raise one child and so hard to raise another?

My Asperger's Child

Pediatricians, teachers and family members initially dismissed signs of autism, optimistically thinking that my child is just ‘being a boy’ and will ‘catch up’ with his social and emotional intelligence.

At the age of 4 he was passively accepting hugs, at best, he didn’t seem at all attached to me. He had difficulty regulating his emotions and would easily lose control, particularly if he was in a strange environment or when he was frustrated because his siblings were ‘bothering’ him. In revenge, he would interfere in their play and become angry and eventually physically aggressive at times.

I began to observe him more closely and note patterns in his behavior. He might spend hours lining up his cars and airplanes in a certain way, rather than using them for pretend play. If someone accidentally moved one of his toys, my child became inconsolable and extremely frustrated. It was as though he needed and demanded absolute consistency in his environment. A slight change in any routine or when his expectations weren’t met: getting dressed, taking a bath, going to school at a certain time and by the same route, changes in what he thought was for dinner, changing the park we were going to play at, could be extremely disturbing to him. Was it that order and sameness lent some stability in his world of confusion?

He had a hard time relating to others, he lacked empathy and he didn’t understand verbal and non verbal social cues. He found it hard to take turns in talking, he couldn’t understand jokes (taking things too literally) and he was overly sensitive to others comments about him, he always thought he was being made fun of. He seemed unable to make eye contact when speaking to someone. He went to the same pre-school for 2 years but could never greet his teachers at morning drop off with either enthusiasm or eye contact. In fact he barely acknowledged them. There was, however, one teacher that looked beyond the gloomy exterior and spent time with him one on one just ‘letting him talk’. Looking back, I’m sure he would have been in a worse place mentally than he was without this teacher.

At the age of 5, to compound the problem, he was having difficulty seeing things from another person's perspective. He lacked the understanding that other people could have different ideas, different needs and different feelings to him. Someone (usually his older sister) would always be ‘setting him off’ and saying the ‘wrong’ thing and it was a roller coaster ride spiraling at rocket speeds towards the ground from there onwards, for the rest of the day. In fact, mostly these ‘incidents’ occurred at the same time every day: after school.

Not much later I learnt that the autism spectrum includes an incredibly wide range of people, with an amazingly broad range of abilities and challenges. I also learnt about Asperger’s syndrome and that most people with asperger’s have average or above average intelligence. Many children with asperger’s syndrome are gifted or exceptionally talented.

With all this knowledge and understanding I believed it was time to take control again as a parent and most of all to try to get inside the head of this child of mine and bring him back from that other world. Now I know that he will always have his world and there is no bringing him back, I too have to go there. Eventually, when he is older, he can adapt and compensate to be able to live in mine. He is an Asperger’s child.

Autism?

It was 2008. After a vacation when even my husband began to suspect something more than just a ‘difficult’ child. I began to feel confused and overwhelmed. Could it be some kind of behavioral problem, or a developmental/ neurological disorder?

Attention-deficit hyperactivity disorder (ADHD) could explain his impulsiveness and hyperactivity but he wasn’t always inattentive, he could concentrate for long periods of time on things that interested him. According to The National Institute of Mental Health those are the 3 key behaviors for that condition to be prevalent.

From what little I knew at the time about autism, he did display some similar characteristics that I remembered reading about some years ago when Andrew Wakefield’s research study and the MMR vaccine controversy was topical. (I had to make the choice to vaccinate or not to vaccinate my oldest, and at the time, only child).

I couldn’t believe that what I was seeing then in my 4 year old son was anything like my ‘vision’, albeit uneducated and ignorant, of an autistic child. My once-held perception of an autistic child: mentally impaired, talking in a robot like voice, repeatedly walking on their toes and never making eye contact. That wasn’t my son, he was smart and that’s that. Still, it didn’t feel completely right. He couldn’t possibly be autistic or could he?