A Literal Life

In our experience of having a child on the autistic spectrum, it is hard work, but not thankless work. There are tremendous rewards as there is with all parenting, but in parenting a child with special needs, these rewards somehow can be richer. For us it can also be rather entertaining as our son is a real character. This is clearly evident in his very literal and concrete thinking in life, a very common symptom in autistic spectrum disorder.

I have heard it said you cannot tell a child with ASD to go and jump in the shower, this figure of speech will be lost on them, they will visualise someone jumping in the shower. These figures of speech and language nuances need to be taught, as something called pragmatics.

This literal thinking can be very sweet and we have some great stories associated with it. One day my son had a cold and was clearing his throat in the car. My response was “Shame boy you have a frog in your throat”, to which I got no immediate response. A few minutes later I heard him going ribbit, ribbit. “What are you doing boy?” His response: “The frog is talking to me.” I giggled to myself and continued driving to school. When we go to school he climbed out of the car and lay down in the car park with his mouth open. I naturally became a bit concerned. ”You cannot lie in the car park, get up!” His response: “ I am waiting for the frog to jump out mom.”

It is one of the stories we love to recall and have a little giggle about. There is however a sad undertone to this story, as those with neuro-typical children would see this as a very clear misunderstanding and explain the figure of speech and their child would learn from this. My son still, to this day, sometimes talks about the frog that lives in his throat when he is sick and it does not scare him, but he literally thinks it is there and the consequences of being too literal are not always so cute.

Recently waiting at the doctor’s room with my two boys for over two hours was a real challenge. Neither of them were behaving particularly well and they became restless with the long wait. My son with autism displayed a level of bad behaviour I fortunately do not normally experience with him. At the end of the consult when I went to pay I had to give him a time out, so I made him stand in the corner whilst I paid and told him not to move. Once I was finished paying he had his pants down and was about to urinate in the corner. Naturally I lost it and thought this was the pinnacle of the bad behaviour only to discover he needed to make a wee and I had told him not to move.

I know many parents will have stories about their children getting into trouble at the expense of others taking advantage of how literal they are. There are also stories of children getting hurt because they cannot understand these figures of speech and I am sure in certain situations, even worse outcomes.

I am not sure what the outcome of being so literal is. I know it presents many challenges in social interactions, and in schooling. I see how confusing it is for my son sometimes when things get lost in translation. As he gets older he is able to ask what we mean. Having a child so literal is naturally very concerning but also at times is too beautiful as with it comes an innocence that his peers have already lost. He still believes in the tooth fairy and cannot even conceive it is not real. This is a strange marriage between the world of fantasy and the concrete and literal. I suppose this has to do with the innocence and naiveté that their parents would concoct a story that is not real.

As always it comes with concerns. We worry about; how to take our child from the literal to the abstract with regards to education? How to better help our child socially and deal with the social nuances that are not based on fact? What happens when our child loses their innocence and is left with only their practical and literal side? How do we close the gap and teach him all the lessons of pragmatics? Does it ever become more innate? This is one of those times when parenting renders me feeling powerless and overwhelmed. I would love to hear from others about their experiences in this regard.

It’s a jungle out there

Things seem to have come a little off the rails. I cannot recall a time I last felt like this. It is the start of a new school year, new teachers, new routines – they all bring about change for the family. Everyone has to get into a new routine and find his or her rhythm.

My son however is taking longer than the rest of us to settle which is normal. It can take up to 6 weeks. But for the first time in a long time, I find myself worried more than usual. I am not sure if it is the amount of things that seem to be bothering him; his diet has gone pear-shaped and he is pushing back all the time. He is having problems with another child at school. His writing is still problematic and we are in the process of trying a computer. The jump in schoolwork seems to be immense. Homework is taking us hours. I am teaching him, I am not a teacher. He is becoming more and more aware of how different he is. He is asking questions all the time. He is emotional and moody. Yes there are other changes; he has stopped play therapy and physiotherapy, two components that have been consistent in his life for the last 3 years.

I know these are big changes for a child with Autism. Yet I find his moods getting me down. The screaming and shouting and whining, makes me feel edgy and I am snappy and impatient. So I try to sit with these feelings and see where they are coming from.

I know it is something I have felt before; I have been here before. I recall I feel like we have been making such good progress. The last year I have been seeing the wood for the trees. All of a sudden though I feel a bit like I am in a jungle. I am feeling overwhelmed, and then it hits me, I am scared. I am very, very scared. I feel a bit like we are at the beginning when it was all new and scary and overwhelming. I have a panga in this jungle of mine and will cut down anything in my way and sometimes I even want to attack those close to me. I am masking my fear with anger.

So what am I scared about? I am scared as I see how far behind my son is, I am becoming more and more aware of the severity of his learning problems. I feel possibilities closing around him and me. I am scared it will never get easier and year-on-year it will just get harder. I am scared I am not handling the emotional aspects of how he is interpreting and internalising his difference well enough. I am upset with him, as I do not think he is trying hard enough and I know he has so much potential.

So where to from here? I am a planner. I like to have an action plan. I know that I should wait and see. It can take up to 6 weeks. But in the back of my mind, I wonder about relooking medication, I contemplate getting a remedial teacher to help with homework, I really, really need to get his diet back on track. But I am tired of the fighting.

Somewhere though in all of this I need to sit with the fact that I am scared. The best way I can help him is to be calmer and less scared. Yet I am not sure how to do this? I know being scared does not help either of us, but with the daily reminder of all his shortcomings, and the list seems longer than usual, it feels like it is harder to cope. Then there is the loss that special needs parents are so familiar with, the loss of dreams we may have for our children. I also realise that at the beginning of this year, there is another loss for the both of us, the loss of play therapy. It gave me the knowledge that there was someone else thinking about my child in a different way. It contained me. The loss for him, I surmise has made him also feel less contained and he is now forced to process a lot of his difference on his own.

Reflecting on this article there are so many thoughts and issues affecting both of us at this time. I suppose it would be concerning if in the face of it all, I was not scared. I have learnt that having a child with special needs, is a cyclical journey – a lot of what has been addressed in the past often comes back again. I feel like I am back at step 1, with the where to now? It is a new set of circumstances that has brought back old demons. There is a difference though, I have more knowledge, I have a support system, I have this space. Maybe most importantly I have the knowledge that I can and have done it before and although I feel tired and don’t feel like the fight, I know I will persevere.

Yes it is a jungle out there. Often the path becomes lost, never mind trees or woods, it is just a jungle of emotions, to do lists, shortcomings and demons from the past. We think we have dealt with an issue of ours, a feeling, or an issue of our child’s, but they can often resurface, catching us off-guard. But special needs parents are super resilient, so sit with the feelings, have your off day or week, then when having to go through the motions again, remember you have been here before and made it through and will make it through again!

A journey into the world of special needs children

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