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Life on the Spectrum

Until recently, if someone had told me I was ‘on the spectrum’, I would have thought they were giving me a compliment about being colourful, vibrant…dare I say kaleidoscopic. I had never heard of this phrase before, and for me it conjures up images of a rainbow. Over the past several months, however, I have come to know it to mean something else, mainly by way of remarks received by acquaintances about my son.

While my son has not been labeled Autistic (for those of you late to the labeling party, ‘On the Spectrum’ means on the spectrum of Autism), the better part of a year has been spent undergoing tests and assessments to see what label might fit for my unique boy, if not Autism or Aspergers. You see, he has some unusual traits that are both cause for attention and concern.

For quite some time I have known that life with my dear Louis was a little more challenging and complicated than for many. Seeing posts of happy families on Facebook of other children my son’s age participating in things that my son would not be caught doing in a million years was one give away (though honestly, what is normal, and how horrible is Facebook for analyzing and measuring said normalcy?), but the other indicator was just how challenging each day seemed to be as issues around food, homework and extracurricular activities mounted. Surely life was not meant to be so difficult?

For the record, my ‘normal indicator’ is a child who is more or less integrated into the world, comfortable communicating their needs, capable of adapting to a variety of situations without too many unusual fears or constraints, and able to participate and enjoy group activities. Of course each child has situations that they may find more or less difficult, but to be challenged in all directions means that there is a constant trigger of the nervous system leaving the child drained and upset a good deal of the time. Last summer I reached a breaking point and the investigation began, a year in the making.

What I learned over the past year is not rocket science. My belief that labels are, if nothing else, helpful as a frame to understand the landscape has been reinforced. My respect and fascination for the intricacy of our neurological wiring and simple need for love has been solidified.

A label does not help one understand the back story. If I were an addict it would not be as simple as that. I would likely have a family history including genetics, environment and nurturing that might lead me to having an addictive personality and acting upon it in a specific way. During this past year I have become more sensitive to this, I hope more compassionate and on a good day more patient.

My son’s story is that he was born premature under a very challenging set of circumstances. Having my own history of a digestive disease that led to a biliary/liver failure, at 12 weeks I went in to portal hypertension. This led to a set of procedures that involved a stent being inserted into my hepatic duct while pregnant. Louis was born at seven months, miraculously with all of his fingers and toes, and after a month in the neonatal ward, he was deemed healthy enough to go home by all medical standards. Over the first two years he met most of the landmarks such as talking, walking, eating teeth coming in, but at three years old, I went into ‘hard’ liver failure due to long stemming illness. For the better part of a year I was away for a week at a time in the hospital receiving IV antibiotics, and then I was absent for three months during a complicated transplant.

My re-entry to the home was not very easy and Louis clearly suffered from separation anxiety for the rest of his time in nursery and into Reception and even Year 1. During this time he started having some help from a play therapist which seemed to help him understand some of the emotions he was dealing with for his young age. Around the end of Year 1, however, rather than getting a handle on his anxiety, some other behaviours started surfacing, namely surrounding sensory processing issues with certain sounds, touch sensations, tastes and things in the environment. He was perhaps seen as spoiled or as a premadonna by those who were not sensitive to the severity of his discomfort or need to control his environment. Sand continues to be a big issue as are certain textures and sounds, and in an effort to keep his senses in check he can sometimes demand a disproportionate level of control over his playtime activities. Over the summer between Year 1 and Year 2 the label Sensory Processing Disorder was used by a neurological Pediatrician to describe my son, though that did not account for other behaviours that were starting to surface.

Along with Sensory Processing Disorder, he was also noted as having hyper-mobility, which explained why almost all sports were challenging the point of eliciting tantrums and fits of rage. We began working with an Occupational Therapist who helped him with his fine motor skills, handwriting, ball throwing, etc. However, as he became comfortable with the therapist, some of the issues we were having at home began to disrupt his sessions with the OT, and she eventually advised us to seek out a Behavioral Therapist and an Educational Psychologist, who spent over 8 hours assessing Louis in a number of ways.

After a year of assessment and thousands of pounds in fees, we now have three labels to hang our hats on, if we so desire: Sensory Processing Disorder, which makes self-regulation challenging due to an inflated or deflated sensory world (some senses are too strong like hearing noises that appear more extreme than they actually are, others are deflated, like touching delicate things very firmly due to a lack of sensitivity); ADHD  , which displays as an almost obsessive concentration on certain things and an inability to focus on others along with hyperactivity, impatience and moodiness; and Tic Disorder, otherwise known as Tourrette’s Syndrome.

The last label has been the hardest for me to get my head around. There is a stigma attached to this, I guess we all know the crazy village person running around shouting ‘Fuck You!’, and none of us would ever wish this on our worst enemy. The good news is that a very small amount of those with Tourrette’s have the ‘Fuck You’ version, but the bad news is that other language and sounds can be like ear worms for those with even a mild case. Things like “I hate you” and “you’re mean” slip out of my son’s mouth about a hundred times a day, along with odd noises akin to burping, mimicking, using wierd voices to speak, and major fits of rage, something linked specifically to Tourrette’s. I am slowly getting a better handle on this neurological disorder that begins to display around seven and sometimes disappears by eighteen years of age, but I have to admit, it is not easy.

Life is not a label. Human behaviour is not compartmentalized, organized, or simple most of the time. We are complex, interwoven, and a lot of the time, quite paradoxical. So to understand a child’s behaviour, or anyone else’s for that matter, is also usually not straightforward. The more I move through this relationship with my son who is loving, joyful, creative, intelligent, expressive and brave on a good day, the more I understand that he is not for me to control or dictate his interests or desires. My own attitudes and interests might shape him, but the best I can do is understand him as being unique, whole and worthy of love.

With this article I hope to help any other parent struggling from exhaustion, confusion, anxiety, embarrassment of having a child that is slightly ‘different’ or on a spectrum that is not that of utter normalcy to give yourself a break, and love what is right in front of you. It takes perseverance and great determination to get to the bottom of some behavioural issues, and at the end of the road all you may find is a label. A label, however, can be all we need to understand and accept, to do the best we can and move on with each day, accepting that tomorrow may be different. A label also means that someone has forged the path before us, that we are not alone in the challenges, and through investigation we arrive at an increased place of knowledge and understanding. The only thing we can be sure of is change, our own vulnerability and the power of love.

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