The story of Luke

Although I already had three children and although Matthew was hardly typical, when Luke was born there was no way that I could have ever been prepared for him. Luke was a beautiful baby who was born screaming...and screaming...and screaming!

A picture of a rare occasion when he was quiet!

After the hospital staff decided that given I was an experienced mother, he might settle better at home, I was discharged sooner than was originally planned. Still Luke screamed. The days turned into weeks and the health visitor recommended treatment for colic, different feeding regimes, wrapping him up tightly, leaving him without being wrapped up... Still Luke screamed for virtually twenty-four hours a day.

At the standard six week check-up, the doctor checked Luke over, looked concerned and started to write frantically. A few minutes later he gave me a sealed envelope and told me to take it straight to the hospital. Of course I opened it the minute I left the surgery and inside it was a referral to a paediatrician stating that the doctor believed that Luke was blind. To cut a very long story short, Luke had severe squints (nystagmus) and a severe wobble (strabismus) in both eyes. Although it became apparent as the months passed that Luke couldn't see, the eye specialist could find no physical reason for this and deduced that maybe his brain was slow to receive the messages from his eyes as they were so distorted. Although devastated at the time, I adjusted to the fact that Luke was going to need many operations and much work to provide visual stimulation. I then started diligently to turn every possible part of the house into a visually stimulating experience. Fairy lights hung from every area, bubble tubes were positioned in his room, and disco balls and flashing lamps whirled and shone in every corner. At around five months old, Luke suddenly started to follow lights with his eyes - the explanation being that his brain had now 'switched' his eyes on. We were overjoyed and though many operations to rectify the turns were still imminent, life for Luke was looking far rosier. However...he still didn't stop the screaming. According to professionals, he screamed because his eyes wobbled so much, he screamed because he couldn't see properly. Luke's poor eyes took the blame for all that he did. I, however, remained unconvinced!

As Luke grew, he reached his developmental milestones at the appropriate time but yet he was so, so different from the girls and I couldn't compare him to Matthew as Matthew had been born so early. Luke liked nothing better than to spend hours putting things in and taking things out ofcontainers. He talked in a strange monotone and used precocious language far beyond his years. According to Luke, everything was 'rather boring'! He would lash out and become extremely aggressive when his peers came anywhere near him and had no interest whatsoever in playing with either them or toys. Luke was happy twirling pieces of string and tapping a pencil around. As he grew, it became obvious to all that he was very different to his peers and his 'obsessions' were causing great problems for him at school. At nursery age he would only wear the colour pink and would have a massive tantrum, lasting hours, if he was put into anything else. He would take batteries out of everything and talked incessantly about nothing but dinosaurs. When he began pre-school nursery, he was so aggressive towards other children that I had to remove him from the nursery until support for him was provided.

As Luke started school, additional help was provided by the school so someone could help him keep focused and prevent him from lashing out at other children. Though very different to his peers, Luke managed to struggle on through school with his support worker learning his ways and encouraging him to work and talk to the other children. It became apparent at this time that Luke too had coordination problems. He found it impossible to run and hop and jump, couldn't even coordinate his legs enough to pedal a tricycle and had great difficulties holding a pen. Like Matthew, he was referred to the occupational therapist and physiotherapist and underwent a series of assessments. Like Matthew he was eventually diagnosed as having developmental coordination disorder or dyspraxia.

However, although he was now receiving occupational therapy, having extra support at school and I was doing as much work with him at home as I could, there was still something very different about Luke. Bright lights made him scream, certain smells made him scream, loud noises made him scream. In fact everything I did seemed to result in Luke having a meltdown (isn't that just a super description?). The dyspraxia explained his frustration in certain ways - it explained some of his rather different ways of thinking but it didn't explain the fact that Luke obsessed over one particular subject to the exclusion of all else. It didn't explain why he tied endless pieces of string around the house or collected batteries and lined them up everywhere. It didn't explain his pedantic language and the way he misunderstood so much of what was said to him although it was obvious he was of extremely high intelligence.

He was eventually referred to what was then called the Autistic Research Team and underwent another onslaught of assessments and observations. There was much discussion with the school and me and eventually, after having been passed from pillar to post for what seemed to me like an eternity, he was diagnosed by a paediatric neurologist as having Asperger Syndrome. I was relieved. I had always known that Luke was different from the minute he was born and now I knew why. I thought at that time that the search was finally over. Little did I know that this was only the beginning of another journey!

Funny Wiring Autism

Funny Wiring Autism

Autism is a developmental disorder that manifests itself in early childhood and affects the functioning of the brain, primarily in the areas of social interaction and communication. Children with autism look like other children but do not play or behave like other children. They must struggle daily to cope and connect with the world around them.

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