My son recently turned 6 – it was such a beautiful day of good behaviour, great fun and only doing what his heart desired. It really was his day! It all worked out so wonderfully and I tried not to over analyse the day but I did wonder how we could recreate this wonderful day, all the while knowing it is not feasible to only do what he wants on his terms all the time.
On the day I just went with the flow and really enjoyed his special day with him. That night I will admit to tears and immense sadness. Six is a big number for neuro-typical children – six year olds can typically do so much for themselves and normally want to be independent. But my six-year-old Autistic spectrum son is not nearly at this level. This makes my heart ache. He so often cannot do the small things, buttons or shoelaces. He still puts his pants on backwards and his shoes on the wrong feet. He also struggles with the big things like swimming, reading, writing or riding a bike.
For once I will not counter this with a “but” or with all the things he can do. I am realising it is okay to feel sad at times and feel the emotion. If you feel the emotion you can move it. This is a very new feeling for me. I do not normally sit well with being overly emotive; I pride myself on being strong. When you have a special needs child you need all you wits about you, all the time. Your child demands this. There is no time for self-deprecating behaviour and wallowing.
In looking back on my sons six years of life, maybe it is time to reveal a bit more about him and our path thus far.
I had a normal pregnancy with no complications; he was born at 39 weeks via elective Caesar. He was born at a good weight and all tests and results came back perfect. Yet he was a difficult baby, feeding was difficult to start, and at 6 weeks the reflux, colic and lactose intolerance went into overdrive. He would settle for 30 minutes at a time, and then we would start the feeding, winding and cramping cycle all over again. He also became over sensitised very easily. As a first child I knew he was difficult, but reasoned it was normal as you often hear of colicky difficult babies. Obviously in retrospect the signs were there early on. But there is no reason to say that colicky, difficult babies have anything but colic and gastro-intestinal upset.
He developed slowly – specifically his gross motor functions. His speech seemed on track and yet at 3½ years, with an assessment from a language therapist, we became aware of his delay in language development.
He was also a difficult toddler and at around 18 months, I had a suspicion he may be autistic. I did not however understand or have any knowledge about the Autistic spectrum. I believed that autism was coupled with symptoms such as rocking, head banging, lack of speech – similar to a “locked in syndrome”. I had no idea what it entailed or the full array of tendencies. Most people are ignorant about things that do not concern them, or those around them.
My suspicion about our son’s autism was based of the way he came apart when he threw a temper tantrum. I could never put it into words at the time, except that he became “unglued”, not through violence but he would be so sad and inconsolable. I recently learnt more about this tendency. Whether or not it is common in Autistic spectrum children, I do not know. In truth it is not something I have heard many parents comment about in their own special needs children, but maybe that is because compared to some of the other behaviours, it is not alarming. For me it was something I felt was uniquely different about him as a young toddler.
Annihilation anxiety is the most primal anxiety in infants – “the human infant in its helplessness, is saddled with a fear of its own annihilation. The protest cry of the infant is designed to summon the caring ministrations necessary to restore a homeostatic state and to avoid any threat to its continued existence.” (1)
Annihilation experiences and anxieties are common in early childhood. They seem to manifest in the following ways; “fears of being overwhelmed, of merger, of disintegration, of impingement, of loss of needed support, of inability to cope, of concern over survival, and of responding with a catastrophic mentality.” (2)
My own description of this relating to my son as a young toddler and even today is that his becoming “unglued” is probably due to annihilation fear or anxiety. When he becomes so upset because he cannot have his own way or he is frustrated, he feels overwhelmed and helpless. Then the crying and helpless feelings overtake him, his behaviour is as if he may actually come apart. He is inconsolable and cannot hold himself together. The dark clouds of emotional anxiety overwhelm him. At times like this, I try to let him calm himself down; strategies to calm himself are of paramount importance. But sometimes the ultimate way is to let him climb into my lap as I hold him like an infant, until he calms. Fortunately this is becoming less frequent but it still is the quickest and easiest way to restore that homeostatic state.
At 2½ years, he was still developing slowly and after a brief hospitalisation at age 3, we started play therapy, mostly to address his anxieties. He was such a unique child and presented so differently that the extremely experienced play therapist never considered autistic spectrum as a diagnosis. She did refer us to a psychiatrist for an assessment at around 3½ years of age. I had done some basic research and knew based on all the psychiatrist’s questions that she was investigating autism as a diagnosis. At this stage we were not given a firm diagnosis other than cognitive language delays and a therapy path was devised.
2 months before his 4th birthday a locum school principal requested a meeting to discuss our son’s progress. This resulted in her disclosing that she thought our son had special needs. When I begged her for her professional opinion as to what his problems could be, she confirmed my gut suspicion, with an Autistic Spectrum diagnosis. I was devastated even though I was not surprised. I found it extremely hard to accept. In truth to this day, I am still not convinced, but in my heart I know it is true!
It has since then been an arduous journey of discovery. We continually increase our understanding of his condition, which is constantly evolving. Obtaining a good network of experts and professionals we trust has also been a challenge. As a new year approaches and he starts at a new school, this will change and we are in a way back at the beginning, which is scary for us and of course for our son.
But in truth these are the easier parts. When it comes to assessing people, referrals can always be used, and trusting my gut is helpful. Seeing how they bond with my child is an important factor. It is also feels so easy because I have a path of action and a semblance of control.
It is the day-to-day things that are so hard. Understanding some of his behaviours and anxieties. What he can and cannot do, versus what he is not interested in doing. His sensory sensitivities are so hard to grasp, as is what is going on in his head. His sadness and at times depression, his anger and frustration, his bad moods, his anxieties – these leave us all perplexed.
The day-to-day planning is also so time consuming and draining. Holiday preparations, aeroplane trips, shopping malls, restaurants can all be exhausting at best. Parents of neuro-typical children take for granted the decision process they go through. Special needs parents have to think of all the eventualities, variables and permutations. If you do not think of them and have strategies for when the breakdown happens (because it will happen) it can be the difference between a scene and a mini catastrophe. We also need to research so many of our decisions for example sensible holiday destinations, as not all places are suitable. A further challenge is finding appropriate relaxed restaurants, parks and places for outings -what should be daily, easy decisions often need to be laboured over.
Of course there is a counter to all of this. He has the best smile and laugh. He is so loveable and confident even bullish at times. So clever, even if it is in an off the beat kind of way, and he surprises me all the time. At the end of everyday in the reflecting moments of happiness and sadness, my heart bursts with such overwhelming love for him. Even though I do wish he were not so hard and exasperating at times, I love him for all of him.
Looking back on 6 years, it has been hard and I know the next 6 will be tough too. Who can anticipate what the teenage years will bring. Finding parenting hard or exhausting, disliking aspects of our children and ourselves as parents, needing a break, desiring a different set of outcomes. Giving up on dreams for our children, and for ourselves, mourning the losses of the person you thought may be or what you hoped your children might achieve one day. Living with continuous uncertainty are thoughts we as parents never like to indulge and always counter with a positive. I can write these down and think them, but I am still learning to feel them. This does not make me a bad parent. In the long run, it is supposed to be part of my healing process in having a special needs child and lessen my anger and make me a better person and parent.
I am coming to terms with this sadness and it gets easier. I think that in the last six years, my growth has also been slow. I can only hope I grow and handle my son and his difficulties with aplomb and tackle my own personal demons with success. But as all parents do I wish and hope my son’s success is far superior to mine, not for my lack of trying but for the success of his.