(chapter 6)...
with the list of additional traits our little one’s acquire can be very daunting; when one-by-one another symptom seems to appear; with A.J.’s it started with delayed social ability, this is becoming more and more noticeable as A.J. gets older when compared to his peers.
Another ongoing concerning issue is sleeplessness; this constantly worries me, especially when A.J. has no concept to the benefits and importance of sleep.
Subconsciously, to our little man, this is just something that wastes good quality hours that could be better used by playing his Sony, DS, or computer games; or maybe watching his favourite Movie, repeatedly, over and over and over again.
Even something simple like doing the most perfectly unique ‘Grand Summersault’ from the end of his bed!
Although he will try so hard to settle in bed, we notice he can become over-stimulated by anything he’s involved in or focusing on, then he cannot physically wind down naturally.
With our other grandchildren; a warm bath, a cup of Milo, and a quiet movie in bed is all they need to settle, having them drift off to sleep in a short time.
With our special man, the total reverse occurs, seeing A.J. sitting on the edge of his bed, wide-eyed and ready for a movie marathon;
‘Yes’…it would actually occur if given the choice!!!!
Another worrying issue is Dietary intake, from the time A.J. came to live with us he has always struggled with the concept of food as though he had no basic knowledge or understanding of most solids, we had to introduce each item and food group to him as though he’d never experienced it before. Knowing this to be untrue, it was very confusing.
Now, so many years later, this is still a continual worry, with A.J. preferring a diet existing totally of: - Nutrigrain; Noodles; and Chicken Nuggets.
The next issue is exercise, never being an outwardly physical child we tried many ways to include A.J. in different types of sporting activities over the years.
Knowing he would never be the next Olympic medallist, we still involved him in different activities for the social interaction. One example, thinking he would find an interest in soccer with his Uncle (who he idolises); we joined A.J. to a local team.
His involvement in training sessions becoming a weekly argument to how, why and what training needed to be done. With A.J. resorting to the concept that ‘his training, done his way’ was all he required and therefore there would be no interaction made with other team members.
During the actual game, being so fast-paced, he became over-whelmed spending the majority of the game with his arms held outstretched directly in front of him, in a somewhat protective manner so as to keep the other players away from him and therefore minimising the chances of any physical body contact occurring.
After extended repeated attempts to overcome these issues we resigned ourselves to the fact that no form of interaction with any contact sports would ever occur. Although we still keep our options open, being hopeful and optimistic.
I have always tried to treat A.J. as normal as possible, if he does something wrong, I sit him down and discuss in a literal sense what he has done wrong and what the correct behaviour should be, then have him repeat it to me so as to know he understands.
There are consequences to his behaviour, although the whole picture is discussed with him so we both have a full understanding of the issue.
The routine at home is also normal with a roster set out to make things easier;
A.J. is totally responsible for his own things; he must keep his room tidy, with bedtime and morning chores, general personal hygiene, and any home duties that he is able to cope with.
Yes we may have to be a little more explanatory in our descriptions for him with simplicity being the key to this, although the end result being as with any child, gaining much needed life lessons.
Even now I still so often get questioned to the reason behind the way he is!
As they cannot physically see a problem they respond with silly comments;
I wonder do they actually hear themselves when they are saying these things.
-He’s just a normal kid; he is very clever and knowledgeable;
-Why is he this way when obviously we see nothing wrong?
-you shouldn't wrap him in cotton-wool you’re just making him worse;
-you’re just smothering him!
-Just send him outside and he’ll fend for himself;
-Tell him to snap out of that silly whining; he’s just doing it for attention;
-He’s got you sucked in; all he needs is a ‘good flogging’ when he carries on;
-There was no such thing years ago, it’s just mumbo-jumbo designed to cause hysteria.
-It’s just a new age stigma, a way to get assistance and funding!
-it’s just a phase, let him ride it out, he’ll get over it!
-he just needs more discipline!
-stop letting him get away with things.
Maybe I should give them a 24 hour first-hand experience to see for themselves what it is like; although I would fear that A.J. would be the one to suffer out of it, knowing that they would not become educated from the experience due to their ignorance.
How can you actually explain to someone that doesn’t physically experience this, what my world is really like?
I can feel so isolated, even in a room full of people.
I am unable to talk to anyone, especially when they don’t want to listen!
How can they understand that I feel so hurt and offended when they say those things to me relating to his disability?
With his early issues A.J. was given more understanding and compassion as the situation was real, you could see and comprehend what had happened to him and why he was reacting the way he did!
Now they believe and say –‘he should be over all that by now!’
How do you get-over AUTISM????????
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