Tag Archives: South African autism blog

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.

A year of recovery

Naturally having a child with special needs is very stressful. In truth everything about it is stressful.

It impacts on my abilities as a parent and it highlights my deficits as a parent. Not to mention the impact it has on me as a person. These deficits make me constantly reassess my life and my self.

It impacts my other children and family in general. Many psychologists are of the opinion that siblings of children with special needs themselves have special needs. This is due to what they are exposed to, the lack of attention they may receive, how special needs in the family affects siblings’ emotions and anxiety, the family environment that ensues as a result of a special needs child. The effect of special needs on siblings cannot be underestimated, some siblings develop close bonds with their special needs siblings and others cannot wait to break ties and get away from them and all they represent. There are interesting research papers done on how many children with special needs siblings end up working as doctors, nurses or in a general industry of helping others. As a parent I have to be aware of what my neuro-typical children see, and sense, hear and feel and what the long-term impacts of our situation and how we deal with it daily, impacts them as well.

Then of course there is the worry about my special needs child. The list is endless. In the short- term; will he be okay today, be well behaved today, have no meltdowns today. The medium term; will he manage, cope, make friends, what school will he go to, what is best for him. The long term sometimes holds scary thoughts for me. Will he be on medication forever, what other issues will we be faced with, will he deteriorate, will he feel like an outcast, the list is endless and I try not go there. I rather try to keep positive and keep it limited to will he succeed at school, will he succeed in life.

Of course there are the tangible concerns of financial pressures, medication and diet. Some days it feels like a constant worry. There is often heaviness in my heart and even in good times and upward periods, I find it hard to totally let go, as I know there will be a downward swing and I can never anticipate what the trigger will be.

As women gain more equality in the world, they tend to take more on themselves. This increases the amount of things they have to get done on a daily basis not only for themselves, but their jobs, their families, their husbands and their homes. Naturally life can be stressful and living with special needs is fraught with additional daily stresses. We all handle stress differently and I know myself, I am A-type personality and I put pressure on myself. I also want to do more and more and my limitations frustrate me. When it comes to my stress, I do also not handle all life throws at me with a breezy and carefree attitude. Even though I have all this tension in my life I think even with my A-type personality I handle it (these two sentences seem contradictory). I eat well, which keeps me healthier from the inside and helps my moods. I exercise frequently, which is a huge stress reliever for me. My husband and I get to spend some really great and quality time together. I have created a support structure, which is pivotal to my sanity.

Yet stress impacts my health. I thought it did not but the last few years have had an effect on me. I run into health problems. Doctor’s comment on what stress is doing to me and tell me I need to get a handle on my stress. My blood counts and stress hormones are in trouble. Yet getting a handle on my stress seems to compound it.. The kind of stress I have in my life cannot simply be walked away from; it is not a job I can go and resign from. I am working on myself to change how things affect me. I have learnt to say No! I have lessened the load. I am following my husband’s advice and where possible only doing, what only I can do. I am trying to make this year the year of recovery for myself and working on improving my blood levels and stress hormones. I also know life, my family, my home, my special needs child and the stress that comes with that are here to stay. As is the person I am. In spite of all this stress I would not change this for the world.

So all I can do is to continue to try my best to manage the situation I have. Focus on my year of recovery. Pray for a break from the chaos and stressful experiences from the last few years. Remember many others have been in the same situation before. And hope it all comes together.