I've always been a spiritual person,( not always in my behavior perhaps ;-), but while my spirituality may not be as defined in religion as some, I've always had faith in God and a higher purpose to all that is. I've sensed or felt a connection that has given me strength during difficult times, and I honestly don't know that I could have coped as well as I have without faith. It's hard to explain or define, and I won't even try to, but I believe every lesson in our lives, however difficult or painful, has a purpose that is ultimately for the good.When I say I've coped, I really mean that while there have been times when I haven't been coping at all with the sole responsibility of parenting a special child, I've come through this with a strong and mostly positive and deeply respectful relationship with my son, so that makes me feel like I've coped better than I could have done.
I don't take anything for granted any more. Anyone who's been through the experience of having a child who's onset of the problems associated with autism manifested after a couple of years of what seemed like relatively normal development, will know what it feels like to have your whole world turned on it's head. It's hard to know looking back, how much of the cause was biological, environmental, genetic, or physical. As a parent it's hard not to carry an enormous amount of guilt and overwhelming responsibility when you see your young child basically appear to fall apart. All you want is for that beautiful little soul that you started out with to come back...and they are just not there anymore...or that's how it appears to be.
Although my son didn't receive a formal diagnosis until he was 6 years old, he went through a major personality and behavioral change at just over 3 years of age. His 3rd birthday was the last time I remember, that was relatively normal. It was the last key event before everything fell apart. For his birthday I invited some adult friends as well as a couple of toddlers. I made a cake, and we shared a glass of wine, and the children ran around as children do.
Not long after his birthday, we moved house. Because my son had been diagnosed as potentially gifted not long before, he was attending a preschool recommended by the gifted children assoc. It's hard for me to look back at this time, because it's hard not to hold myself responsible for what happened. The staff at the preschool told me he had been throwing toys at the other children, and behaving strangely in other ways. His whole behavior towards other children changed virtually overnight. He treated them as enemies, and attacked first and asked questions later. I had to withdraw him from preschool. I had been playing in a band, and practicing while my son was in daycare, but I stopped that as well. For the next two years my son wasn't able to be around other children without supervision, as he would bite them or throw things, or tip them off their trikes.
Looking back now, I'm not sure why I didn't seek help then. I didn't understand what was going on, I felt an incredible amount of grief about the changes in him, but his behavior seemed so foreign and alien, that it just made no sense to me.
There are a number of things that I consider contributed to the breakdown, but looking back honestly I can see that even as a young baby he was hardly typical. I personally believe, and this is not based on scientific research, but my own conclusions from my experience, and what I've experienced, or read of others...that ASDs have delicate brains to start off with, and a combination of physical, emotional, genetic and other factors trigger the changes in what was perhaps from the beginning a highly sensitized brain..
In my situation my son had been through a number of major changes in his short life. His living environment changed more frequently than it should have, and though I was always a constant in his life, I could find no one that would love him as I did. At the age when young children begin to reach towards the other...the father ideally, or an aunty or grandparent, there was no one there. The people we did become close to, because they had no real commitment to be there for him, when he bonded with them, disappeared.
I had moved back to my home town when I separated from his father...(mostly because his father was unable or unwilling to share with the care of his son) so that I could be closer to my mother. However she made it clear that she had little time or energy for her grandchildren. She was still working full time and planned to spend more time with them when she finished work in a year or so, however this never happened as she died within a year of finishing work.
Both my son and I developed a viral chest infection that was very hard to shake in prior to his meltdown. I believe that this may have contributed as well. It came with a hacking cough that sometimes resulted in vomiting, and lasted for months. I had breast fed my son much longer than some, but a reaction to foods he couldn't tolerate may have contributed once I stopped. I've recognized now, that we both have a degree of gluten sensitivity and benefit from limiting gluten foods in our diet. Also my son was a premature baby, having been born a month early.
However putting aside the factors that were environmental, if I look at the adults on both sides of his father, and traits of asperges are obvious both in my sons father, who is is classically asperges and my father who also has those traits. Even my mother had the extreme oversensitivity that is associated with autism. She had an inability to take life lightly, and was extremely sensitive to sound, and had a very developed ear for music. She also had very sensitive skin and suffered from allergies. I will talk about my family more in a later post. At the moment I'm just going back to the point where I felt like I lost my little boy, because from that point, I couldn't socialize with him. He was in general, ok just with me, but would push anyone else who tried to get close to him away...at times violently.
There are so many things, as a parent, that in hindsight, I would do differently. For many years I went over and over what I would have liked to be able to change. I ask myself, was he purely autistic, or was he a gifted child who didn't get his needs met?? I don't have answer. The psychologist who assessed him at 6 felt he was definitely asperges. My friends who have known me throughout his life, often found him to have the classic unresponsiveness of ASD, but I could never let go of that one year old that was full of life and so precocious.
Prior to entering my son into the gifted preschool when he was 3, my son attended a local daycare for about 9 hours a week. Before going to the daycare, he would ask for what he wanted, although he was only two, his grammar was perfect and he used full sentences, but after 6 mths of so, he seemed to have learned that screaming was a more effective way to get what he wanted. It was because this and other concerns, (he seemed to have realized already at 2 yrs old that he was different from the other kids, and had started to withdraw), that I changed preschool, hoping to have a better experience at the gifted preschool, however even there he didn't fit like the other kids did.
He always stood out like a sore thumb, in his own world, playing next to but not with the other children.
I remember him at just before 2 yrs old, when he was just in daycare for a couple of hours at a time, as the children were all given their juice, and the other children were saying "juice" "cup" and he was saying "Shawn needs some juice, Janet needs a cup". At 16 months old he had spoken his first full sentence "here comes another ambulance" having only said his first words a few months before. I remember that a month after saying "bo" for book... he had moved onto "I'm frustrated". So for him to then go through a break down in his speech, and for it to become for years almost unintelligible was devastating.
It's only now that I can look back and see that God may have had a purpose in all of this. At the time, and for many years afterward my experiences were only the cause of deep and extremely isolating suffering that I felt I couldn't express to even with my closest friends. I'm trying to tell my story here because if I do, maybe someone else won't have to feel quite as isolated as I did. If there are even parts of my story that you can relate too, maybe it will help. My story is unique to me, but there will be elements that are similar to yours. Perhaps you may even feel better that maybe you don't have it so bad in some ways.
Some people have a powerful and obvious experience of God in their lives. My God is subtle, and speaks to in a language that at first I may not understand. I felt alone in my journey, but looking back I see that God was always there guiding me. Because that path led me to where I am now, in a much deeper and fuller appreciation of the unique gift that my son is. Most importantly of all, I have learned how important it is to treasure and live in this moment as fully as you can, because this moment is where everything that is important is. Dreams for the future may never happen, and the regrets of the past stop us from being present with our children now.
I'm trying to unravel the story of our life, not just for the reader, but for myself. :-) We're not out of the woods yet (another sentence an autistic mind might struggle with...can you imagine what it's like to be someone like me who loves the subtle nuances of language, to have a son who is so literal??) there are whole new challenges as adulthood looms. I try to just live it, one day at a time.
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