(chapter 2)...
Stepping forward, unaware we were committing to what would be the first of many lifestyle changes, making decisions that would constantly enlighten us in new and astounding ways.
I knew those first steps would be in the direction of ‘understanding’. So I set out a plan and locked myself away from ‘Reality’. Giving 100% attention to A.J.’s needs, assisting with his diet, speech, and personal routine; all of which had been neglected so severely!
Attending Dr’s appointments, hearing tests, speech therapy, and the list continued.
It was during one of these assessments I was informed he seemed to be ‘Socially Delayed’, probably due to the neglect and possibly graded at the age of a nine month old (therefore being almost 2yrs below his peers).
Seeing the fear in his eyes, total confusion expressed across his tiny body, a piercing screaming cry that never seemed to end. Then being told he had spent many months been passed from pillar to post, unsure where or who he was with each time he woke. Shocked by the stories that continuously came to the surface; we knew for his safety and protection, the best thing would be to immediately gain full legal custody.
Trying to convince ourselves with time and assistance in a loving, nurturing, secure environment, he would eventually learn to enjoy life as a normal loved little boy; although at the same time feeling there could be more to it than the neglect.
Never-the-less, his history, I was yet to discover, would be the underlying issue to over-shadow his diagnosis fully coming to the surface for some time.
As the months passed by I was amazed to the progress he made with his learning.
In a short time he was talking clearly, and then he quickly progressed in other areas. With consistent work he easily gained recognition of many items on flash cards and puzzle boards; including the alphabet, numbers, shapes, colours, and then words. It became his obsession, the more knowledge the better, he thrived on it. This little man seemed so determined to achieve at everything he attempted.
Persistence, attention, and nurturing, helped to settle him into a normal routine.
Well of sorts! We still had the problem of Sleep; it didn’t seem to exist.
What is sleep anyway? Why would that be important? His idea was party mode at 2, 3, or 4am; then with as little as a 20 minute nap he would have a burst of energy to last another 4 hours or longer.
We soon noticed how anxious and agitated he became in certain environments and situations, being unable to handle extreme noise or large crowds. We would work hard at keeping him settled and chose carefully where and when we encountered certain different scenarios.
With the focus on Consistency, Routine, and Repetition, this became a way of life to building his positive living environment. Not knowing at the time just how crucial this would be, in the layout of his future.
Once a little more settled, A.J. joined day-care then pre-school, I had no warning signs or concerns given to me from either place regarding any progress problems or issues. Although when collecting him I would always find him quietly, playing on his own in the corner or edge of the play-area he was involved in.
A quiet content child at home, he loved lining things up in sequence and pattern form, as long as he knew we were close-by he would play undisturbed for hours.
At the end of pre-school, we received his report; I was confused with the statement of his limitations involving counting skills, knowledge of colours and shapes, and other areas.
How could this be? I know he can do all this and more, were they assessing another child?
They stated on assessment he was distracted, non-attentive or responsive, suggesting he delay attending school for a year! Unhappy with the report, I discussed it with the school he was to attend, their reply was –“as he is school age we cannot refuse his admission”.
With this response we then set about to introduce A.J. to the world of education, beginning with the preparation of the school routine with a time schedule, preparing him for a routine of waking, arriving at school, study time, breaks for meals and more, knowing by the time school began he would know what to expect and be settled in their routine.
Starting Kindergarten our little man happily and easily settled, with the only area of possible concern, as with preschool, being sole play. His teacher, noticing this, sought ways to involve him, although he still preferred to watch from a distance with any group play or activity.
We then began to notice a few behaviour traits, including body tics and little humming type noises, I didn’t think it was anything majorly concerning at the time, although it was discussed with his teacher, and we both agreed to monitor it!
Later that year I came across and read an article regarding Aspergers. I was surprised by the comparisons, as though they had written an article about our grandson directly. Ticking each section I felt stunned unable to comprehend the extent of the similarities. I had never heard of Aspergers before, although while talking to his teacher, who had previous knowledge, I gained some insight to the disability. She agreed he was possibly on the spectrum and suggested I look into it further, and have him assessed.
Contacting the paediatrician for assessment, he confirmed there were issues to address; especially noticing symptoms such as head and jaw “thrusting” movements and possible “blank seizures”. The Dr stated his initial progress would be with speech therapy and other remedial assistance, which was already in place at school. So confirming we were on the right path.
After receiving the Dr’s report, the assessment stated issues related to: - Oppositionality; Pervasive Developmental Disorder; Hyperactivity; and developmental language delay.
What did that really mean??? No-one seemed concerned to extend on this for us!!!
Without being informed to the meaning and severity of the diagnosis, and with no notification for follow-up treatment, I had the understanding the programs set up at school was the only thing needed to assist him.
The following year we arranged to repeat Kindergarten, hopefully helping the delayed social development, and gain a more settled school routine, with assistance from the special needs programs made available to him.
While he managed to progress academically at a great rate, enjoying all aspects of his educational involvement, we worked to develop his personal interactions.
Feeling I may have been too eager to find answers, I prematurely brushed aside my concerns at school, although still focusing on issues related to his personal history, where certain symptoms (tics and unusual sounds) would dramatically escalate directly before and after any contact visits occurring with his mother.
Over the next few years we repeatedly overcame hurdles, only to be presented with another stream of challenges. With every aspect of A.J.’s life we would sit and assess, presenting all the options, then make a decision for the best possible outcome, addressing each item in the order of importance, then move onto the next issue.
Finally feeling the fog was lifting, showing a bright and cheery pathway. Could it be possible we were facing a turnaround moment, would we dare to believe this moment for what it seemed to be.
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