Tag Archives: autism blogger south africa

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!

Battling the inconsistencies

Children are unique with each having their own character traits. Children with special needs can sometimes be clumped together, based on their diagnoses. I would say sometimes correctly so, as certain groups of special needs children will have very similar traits, however I do admit that this could be my bias and this is based on my experience as an outsider of other special needs groups. My experience is with autism and yes children with autism all get clumped together when it comes to the diagnosis and even sometimes the recommended treatment, yet the causes, symptoms, manifestations, behavioural issues, cognitive ability and treatment protocols vary drastically. As pointed out in the article, “The vast spectrum”, autism is a diverse and complex disorder with no best-case practices applied across the board.

Autism is inconsistent from case-to-case but I also find that even with my son, he is so very inconsistent. We never really know what we are going to get from day-to-day. I don’t know many parents who have children on the autistic spectrum, who experience the same inconsistencies as we do. I am however sure that he is not the only anomaly.

Our son varies from day-to-day, hour-to-hour and even minute-to-minute. We never know what to expect, which makes parenting and education even more of a challenge. For example he sometimes speaks so coherently and beautifully and at other times he can suffer from terrible non-fluency. His thinking can be so clear and lucid and at other times he is so unclear and even irrational. Socially he is so approachable and personable, yet at times he suffers socially and is inept. His schoolwork can be done so carefully, with thought and patience or at times rushed and messy with no interest. There are the things he can do and the things he cannot do and there are the things he will not do. Unfortunately we never know which it will be. Then of course there are the behaviour issues. He can be an angel and even a terror, good and outright naughty (yes he has the ability to be naughty). His behaviour is also so inconsistent and vacillates constantly. His behaviour not only affects his disposition but also his ability to learn. If he is in a mood at school he does not learn at all. His inconsistent behaviour also unfortunately affects our ability to do many things as a family. Certain outings such as movies, theatres and restaurants are a real challenge. He can be so happy and calm and cooperative and then suddenly so sad and moody and angry. Medication has helped to date, but it has by no means helped extensively. The one thing he is consistent in, is his inconsistency.

We are unsure why he is so inconsistent. Did he not sleep enough or did he sleep too much, did he not eat enough or did he eat too much, has he got stomach ache, is he anxious, is he down, is he sad, is he sensory overloaded, is he hot, is he cold. The list is endless and if we think we have found the cause this time it will not be the same next time. Even though he is a child who is verbal, he himself does not know what is wrong or bothering him and cannot express this in words. For now it just seems that this inconsistency is his own unique set of symptoms that comes with his autistic spectrum diagnosis. Seeing his “good side” and all he can achieve, his glimmer of potential, his sparks of genius is amazing and keeps our hopes alive that this can one day become more consistent and less fleeting. Our focus is on unlocking the inconsistencies and making him more consistent, especially in his strongest areas.

For many parents in the battle with autism, this is the one area we all experience consistently, the ability to unlock our children’s potential no matter what it may be.