When it feels too hard

I will admit that some days or even weeks, it feels so hard and exhausting bringing up my autistic spectrum son. His bad moods and the way we relate to each other, affects our relationship. At times this makes parenting him feel very lonely, sad and even demoralising.

He is such a delightful and loveable child but when we are having an autism crisis (as I have termed them), my son’s behaviour wears me down. He is a child filled with immense amounts of frustration – typical behaviour for autistic spectrum children. His frustration manifests in the expression of anger. For weeks at a time he can shout at us, or blow up about the smallest incident. Sometimes it feels as if I am in an abusive relationship. At these times I really have no idea how to deal with him. I try to be creative and lift his mood. Sometimes it works and changes his attitude temporarily, but the foul mood usually returns. He receives play-therapy and behavioural therapy, which help in the long run but not in terms of alleviating his moods during our ASD crises. As all things pass with the passage of time, so do his moods. They improve and I am left with the happy and delightful personality that makes him so endearing to all.

When his moods get the better of me. I find that when he is in a bad space, so am I. I find it really hard during these times to find light at the end of the dark tunnel we have both entered. Some days I have the patience to figure out how to get us through these bad days. It usually involves pleading, rationalising, bribing, sensory stimulation and a lot of hugging. However, at the end of some days my tether is worn down and I can also shout and scream.

It is hard to foster a relationship with an ASD child, irrespective of how intellectually strong they are or how minimal their cognitive impairment is. They are compromised in the social area, which makes it challenging for them to read social cues. My son can read happy cues; smiles and laughs are obvious to him. Sadness and anger as non-verbal cues are hard for him to gauge. Often he only realises I am angry when I am shouting and then he is not always able to understand why I am angry. This is due to a compromised ability with regards to empathy or theory of mind. Often ASD children do not want to be sociable, they prefer their own company. As much as my son loves my company, it is more because he wants me present as opposed to wanting to interact with me. Socially he does not know it is inappropriate to tell a person mid sentence that they need to keep quiet now because he has had enough. Socially he does not know how to be polite. These lessons come with exposure, time and repetition. Obviously all of these behaviours make it hard to develop a relationship.

Our son’s lack of empathy, not only limits his ability to understand why I am angry, it also limits his ability to understand why, for example, my Nikon camera is not a suitable toy and he becomes angry when I say no. He also does not understand why it is dangerous to run across the road, touch the stove or start my car. He does not have the theory of mind to decipher why these may be unsuitable and why they make me angry or scared, as he is not angry or scared. This also results in affecting his mood. He hates hearing no – irrespective of what the reason may be behind it.

Theory of mind is defined as: the ability to attribute mental states—beliefs, intents, desires, pretending, knowledge etc. – to oneself and others and to understand that others have beliefs, desires and intentions that are different from one’s own. Related to this concept is empathy – which is the ability to put oneself in another shoes.

Not having shared interests is another stumbling block in battling to foster a “normal” parent-child relationship. At 6 years old my son still sees me as an extension of himself. As a result our relationship is based more on his need for me as opposed to him seeing me as a separate person, with my own wants and needs. Although he does try play with me at times, it is always limited to the same games – around nurturing and care. Or he will play his own version of a game, which will not include active participation from me. At this stage, we have no common or shared interest that could help foster a relationship or set the platform for games we can play together.

To be honest it is often boring and for me to feel like I do not have a material relationship with my son. I know he is happy in the relationship we have, and for him he knows no other way to relate to me,. Perhaps it is about my acceptance. Accepting that for him it is important that I take and fetch him from school, that I am present for him physically and not necessarily involved. I try really hard to accept these small things, but at times it feels reminiscent of being a young adult when you are in a “ bad relationship” with a friend or boyfriend that is very one sided, where you feel a bit used. The other person gets a lot out of the relationship and although you love them so much, you do not get the same output. The relationship is very one sided. I do not have any grand illusions about parenting or think of my children as my friends. but I do have very different relationships with my other two children, and it is hard sometimes to not yearn for this kind of relationship with my ASD son.

I do not have any pearls of wisdom on the difficulties of having a “normal” or even “semi-normal” child-parent relationship with an ASD child. I do know that many ASD parents feel the same way about the relationship with their ASD children, especially when they are high functioning. It should be easy to foster a relationship with these kids, despite the difficulties around moods and tantrums, empathy and shared attention. However their social deficiencies do make it very hard. it is very difficult to develop a meaningful relationship with this person who you love so dearly, but who does not see you.

Then of course one ponders the future. I know he is 6 and has a long way to develop socially, but already I see my youngest child outgrowing him socially. It is a worrisome realisation and I am concerned about his ability to have meaningful relationships with others. He may find someone to love, but will it be unrequited. It may be hard for a person to be in a relationship with him, if it such hard work and one sided. I know I should not contemplate his future too much, as I never know what will materialise in his life and with his abilities. He does have so much potential but being a realistic parent these thoughts do cross my mind.

Having an ASD child exacerbates any feelings of impotence I have around parenting. I cannot do much to help my son. He constantly makes me tap into emotions and feelings I do not like to explore; powerlessness, fear, sadness, anger even sometimes a dislike for my parenting abilities and his difficulties and moods. All of these emotions harbour a lot of anger in me. I know I need to move these feelings of anger, but I am not sure how to do this. What are we supposed to do with anger? When we are sad we cry, when we are frustrated we scream, when we are happy we smile. I keep my anger close to my heart and this exhausts me.

I may not have learnt skills yet on how to handle my son during his ASD crises. Also, I may not have learnt ways to bond with my son on a “normal level”. I do know how much we love each other and we have a very special connection. I can only surmise that as he gets older, we will establish a more common ground or at least hope we do, and that with maturity his moods and expression of his feelings, desires, needs and wants improve.

On the other hand I know that I need to feel the anger. I can express anger about his condition. I can say I am so angry about his behaviour in an instance or even that I am angry with him. I can say I do not like him in a certain instances. For some reason though I feel traitorous saying these sorts of things about my special needs son. I know there are times that we do not like our children or they disappoint us. This does not mean we love them any less, but acknowledging this feeling with a child that has a congenital condition feels very cruel and heartless. I also know that keeping these feelings in, is really no good for me. I need to feel them and move them. I have only recently started feeling the sadness, feeling the anger is however more challenging.

I know that dealing with his anger, my anger, his moods, our diminished ability to forge a normal relationship, our lack of attention sharing and his lack of empathy – would all be so much easier if I could relax and accept the situation for what it is – if I could have faith that he will grow in time and give him the benefit of the doubt.

We do not live in a world of theory, and when I am in a positive space this is easier. When I am in a negative space, I do not feel as upbeat or insightful as usual. This is normal and extremely common when parenting a special needs child. Just as my son’s mood will improve, so will mine. I am a person who usually gets her motivation internally and am not particularly affected by my external environment. It is a novel experience for me that my children, and especially my ASD son’s issues, can have such a profound impact on me.

In closing a few words from Dr Seuss:

“ And when you’re in a slump
you’re not in for much fun
unslumping yourself is not easily done.”

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