Tag Archives: South African autism blog

Mourning the losses

There are so many challenging aspects to raising a child with special needs, from dealing with the many emotions that come with special needs, uncertainties about decisions you make, extensive planning, preparation and thinking; to therapies, appropriate doctors, who to listen to and who not to listen to – it is an overwhelming experience. Mourning the losses is another challenging aspect I have recently started to explore.

With the diagnosis of special needs comes an immediate sense of disbelief and once the diagnosis registers, comes an aspect of trauma. Trauma in having to deal with a child with special needs, the consequences, results and strategies for a way forwards. The strategies and plan forwards is constantly changing and is a consistent part of managing special needs, as the child gets older and develops in some cases and in other cases does not. The trauma of seeing how the world and people close themselves off to your child, the trauma of knowing the life and daily battle that will exist for your child.

As we settle into the trauma of special needs and the process of day-to-day management, mourning the losses also becomes part of the day-to-day life and management. For me the first element I had to learn to mourn was the realisation of how my son’s condition was limiting his scope in life. for a typical example is becoming aware of his learning problems and what this implies to education and his possibilities in life of a career and livelihood, sense of self worth and happiness or the realisation that he needs to be medicated in order to be educated and what the implication of this is on social and incidental learning and of course how much he actually misses out on. There is the constant realisation that my child is limited in more areas than normal and it becomes apparent to all that the world is not his proverbial oyster.

Besides mourning what my child is not and the loss of what he cannot be or do is the sadness at how hard things are for him. Perseverance is a trait we all want our children to have. Perseverance becomes a necessity in a special needs child’s repertoire of skills. They are not going to get things right the first time or even the second. Many of these children do not want to persevere and try again and again.

The impact of autism in my son’s life is huge and it is so disempowering to not be able to help him, or explain things to him in a way that makes it easier or lighter for him to endure. Sadly special needs does not only affect the afflicted child, it affects everyone in the family. The visions of the parent I thought I would be and the fun things I thought we would do as a family are also losses I mourn. I have had to become a real planner, someone who is not spontaneous and have even become an inflexible parent much of the time, making sure all arrangements and environments are suitable for my son. All of this has a large impact on my family, but not as big an impact as the fact that we cannot do certain things as a family due to my son’s difficulties, or the fact that when we go for an outing and everyone is all excited, we often have to cut our trips short due to my son becoming overwhelmed, overloaded, miserable or impossible to manage. It is hard not to see the disappointment and effect on everybody else. We are a family and a cohesive unit. We do not like to do things separately but it becomes very limiting and there are times we have to go our own ways to make it easier. We are not all happy about this and it can be very sore for my husband and me to exclude our ASD son.

I too have had to change the person I was in order to manage a child with special needs. I have gone from being a spontaneous person to a real planner, from being fun to overly responsible and serious. At times I feel like I have lost sight of the person I was or at least in the presence of my special needs child, I am very different. I wish I could be more fun and easier going, but this is not always possible. Our son’s condition has placed constraints on all of us.

Family dreams and plans, personal career prospects, personal dreams have been lost. My husband and I would have loved to have had another child however as reality sets in and you become aware how time consuming, energy consuming and financially challenging special needs can be, these dreams need to change. Although our subsequent two children are neuro-typical the statistical probability of having another child on the autistic spectrum cannot be ignored. According to Time Healthland “with at least one older sibling with autism, the risk of the disorder was 18.7%”

The reality is having a child with special needs affects everyone in the family – it redefines your relationships with your family and you as a person. As with any trauma, it makes you aware of your impotence in so many areas and forces you to change and adapt who you are as a person in order to better survive emotionally and physically, but also so you can be a better parent. You have to reassess your hopes and dreams for yourself, your family and your special needs’ child. It forces you to rewrite your story in ways you could never have imagined. You also have to mourn the losses because if you do not, you will be a shell of a person and will forever have unresolved, unwanted feelings.

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?