Tag Archives: PDD-NOS

Pervasive Developmental Delay – nos otherwise specified

Holding Back

I frequently find myself wondering how much emotion is appropriate to show ones children. My kids have seen me very upset by another person once and crying from being very ill once. Each child had a very different reaction and handled the situation uniquely. My ASD son on seeing me being upset was rearing and ready to go and hurt the “ugly man” who made me so sad that we had to hold him back. My other son was calm yet a bit concerned and interested in this newfound side to his mom and my daughter was a bit confused. On the incident of me being very ill my ASD son was very anxious and crying, he tried to help me, called for help and screamed when he had to leave me. My other two children comforted me in their own unique ways.

I think it is an important lesson in life for our children to see human emotion especially from their parents. It can be used as a guiding force in how to handle various emotions. Although I firmly believe in this principle my kids have not seen all my ranges of emotion, specifically sadness, anxiety and fear. I keep these very much in check, as I also believe as a parent I need to protect my children, they do not need to be exposed to too much too early. So what is the elusive balance, in teaching our kids emotion and how to deal with it through our own experiences, yet protecting them from our own hurt, fears and anxieties?

I grew up in a family where my father was a typical man and very emotionally strong. My mother on the other hand is a much more emotional being and perhaps shared too much. I have always prided myself in being able to feel emotions but not overtly showing them. In truth I have realised over the last few years that this is a farce. By not showing your emotions or having an outlet, I think I have become quiet hard and one of my challenges of having an ASD child has been to feel more emotion and realising I will not fall apart.

Naturally my kids have seen me cross or angry, especially as this is often directed at something they may or may not have done. I do not like to shout, but we all do it as parents and of course I have days when I do more than my fair share. My kids always get ample warning that they are pushing me and that I am getting frustrated. How my two neuro-typical kids will handle emotions of anger I am not yet sure. They are little and still have temper tantrums or fits of tears to vent their emotions. My ASD son who already has frustration tolerance and anger issues, shouts at us and gets extremely angry and moody. I do get concerned that I, in some way, may reinforce his behaviour. Working on his anger and mine is something I address all the time.

My ASD son started “big school” this week. Who can explain why for mothers the first day of “big school” and school uniforms tug at our heartstrings, which are apparently directly joined to our tear-ducts. I found myself in a familiar position with him. I wanted to be emotional but felt I had to hold back. I did not think him seeing me with tears in my eyes would bode well for his anxiety levels. My plan was therefore to drop him off and afterwards feel the emotion. The moment I walked out of the school there was a silent sob from me, but the moment was lost and I found myself feeling sad that I lost the ability to feel the emotions I knew were inside me. I saw other moms with tears streaming down their faces and hugging one another. I felt very excluded from this experience. Holding my emotions so close and tight affects my ability to feel. I want to feel them but I have a valid reason to keep my emotions close to my heart. But by doing so, I become closed off and hardened; a very common occurrence in special needs’ moms.

Excitement is another emotion my husband and I keep close to our hearts; we were so excited about his first day of school as was his younger brother and his granny and nannies. Out pop the cameras, I would have loved to behave like the paparazzi and shoot 10’s of photos for this occasion, however 2 to 3 was the maximum amount we could get. Making a big deal of this day would set up expectations he could not handle. As does making a big fuss about the fact that he has just learnt to swim or read his first word. There seems to be an immense anxiety on his behalf about us having immense excitement in his abilities. It feels like he senses our expectations and this is too much for him.

Anxieties and fear are of course other emotions that have to be controlled. My son can feel my anxiety in a situation and it just feeds his anxiety. I think it is beneficial for my ASD son that I hold myself back in most contexts. I think it enables him to make more sense of his world and cope better. He does not necessarily understand certain emotions yet, so they may be confusing to him and can also be too much for him to tolerate and work through. Luckily for me when it comes to cuddles and love, he is really an affectionate child who is very demonstrative. I know many parents with ASD children who have this as an added battle; their children do not tolerate affection. This can be demoralising and soul destroying for some parents but they become accustomed to it and learn not to take it personally. Yet for other parents it is always an immense aspect of pain. For most moms, hugs and kisses are supposed to heal and make it better, but these too, can be another set of tools ripped from an ASD parent’s armada.

For my other two kids I feel I am doing them an injustice. Even though I am a very loving mom, they do not get to see all sides of me and learn human emotion and how to deal with feelings from me, even in a small and yet still protected way. I can talk about them being sad, excited, powerless and anxious but never really show them this emotion in me, or give them lessons in how I deal with these emotions. They are very interested in the fact that I may sometimes cry; why mommy, when mommy; even how mommy, do you have tears, do you make a loud noise or a soft noise?
I always used to have an irrational fear that if I truly felt my emotions I would become depressed or fall apart. This is not an uncommon fear. Many of us do not like the thought of dealing with our emotional stuff; we are concerned if we go there we may not be able to handle the emotions. I have worked hard in the last 3 years to come into touch with my emotions. This has been beneficial, as I love being aware of what I feel. I just wish I had the ability or luxury to show these emotions more, not always having to be so held together. I think instinct plays a role in holding me back – even if it does feel a bit unnatural. But, I have worked so hard to feel more and I do wonder what would happen if I was a more feeling and emotionally open parent? What are the gains and losses to each approach?

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.”