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A Balancing Act

There is so much information with regards to how special needs children affect parents and families. But there is little information on how to manage the demands.

Before I continue, the term “special needs” does not only imply children with disabilities or chronic illnesses. The term special needs is becoming commonly used to explain all types of children who have excess demands and needs. Children with emotional problems, ADD/ADHD, dyslexia, learning disabilities and so forth are all starting to fall into this category.

I have previously written how parents of a child with special needs may interpret their situation, the emotions they may have, and dealt with tips on how to deal with this. I want to focus a little more on siblings and their interpretation of events.

There are a few research papers that address how the siblings of children with special needs may actually be getting on in the system. I refer to research conducted by the Handseltrust in 2003. The research indicates that siblings of a child with special needs, themselves have special needs. What does this mean? It can mean that a sibling of a child with special needs may themselves also have some difficulties as there is a genetic component. There is however the fact that they themselves have a special set of needs in that they too have a need for added emotional support in the family or system.

The Handseltrust, looks at what it is like to be a sibling of a child with special needs:

  • Sometimes siblings may assist a parent with care roles, even in small ways, such as; at a party making sure their sibling is included or helping their sibling partake in the game.
  • Sometimes siblings may feel that family activities are affected and they cannot go out because their sibling runs away or embarrasses them, or their sensory issues limit what they can do, causing the child to perceive their family as not normal compared to others.
  • Children that are not in the know about their siblings’ issues may in fact concoct their own drama from bits of information they pick up.
  • If a parent is in denial about their child’s issues this will rub off onto siblings.
  • Siblings noted how meal times, and routines were often interrupted by their sibling’s needs or bad behaviours.
  • There was also a great concern about their sibling’s unusual behaviours or inabilities to grasp concepts they themselves find simple.
  • Often siblings fear they themselves may have something wrong with them.
  • One of the biggest impacts that came through in the paper is that of isolation. Siblings often feel isolated because they do not get enough time with their parents – they are very aware of the time imbalance, and have no one to talk to about their resentments and feelings.

Who do our children speak to about their feelings? They often cannot talk to their friends, with the fear of being teased or bullied – that fear not only extends to themselves, but also to the fear of their sibling being bullied or teased. Often we as parents are too busy to deal with the questions, do not want to deal with the questions and often children simply do not ask us, as they do not want to embarrass us or cause us more pain.

So as the y generation may say “that’s a real downer”. It is hard enough as parents to manage the demands and needs and stresses of one child with difficulties but now I have to manage the impact on my other kids, let alone my own feelings and emotions.

The elusive balancing act that we all strive for, the balance between work and family, work and leisure, saving and spending, looking to the future and staying in the present, the list as lists often are, feels endless. In special needs families the balance feels so much more precarious, due to the excess demands, financial pressures, the guilt and need to help our children, yet maintaining our own sanity and getting in some relaxation time. The balance between spouse and children, children and self, and now the balance between meeting all of your kids demands and needs. Sometimes striving for balance feels like it may be more anxiety and stress provoking than having no balance.

I personally know I always feel like I am getting it wrong with my own family. I cannot divide myself equally between all three, someone is always losing out. I also know that my children are aware of the extra time I give my son with special needs. How can they not be? It takes us longer to do homework, I have to help him with so many more tasks than I do them, I spend more time making his food he is in my thoughts and worries more than they are. For them this perhaps translates directly to loving him more, and I find them often trying to engage me in negative behaviour. For example, “I will also take an hour to do my homework”, “I will also not learn to tie my shoelaces so mom can help me get dressed in the morning”.

So how do you meet the demands of your special needs child, let’s call him Tommy? The truth is you cannot meet all of the demands of Tommy; you have to learn to say no to Tommy, no to your other children, but also no to yourself. What do I mean by saying no to yourself, you have to change your own mind-set and realise that you cannot do it all.

One of the biggest issues with all children with special needs is learning to become self-sufficient. It is imperative that you learn to empower Tommy and also his siblings, so they can do more for themselves. This may mean involving the school or therapists on simple tasks such as self-dressing, brushing hair, tying shoelaces, making their tea or their own sandwich. If Tommy can start doing these things on his own it will free up a lot of your time but also is becomes easier to say no to your other children when they expect the same treatment. Also Tommy will feel so proud of himself by becoming more and more self-sufficient.

With regards to siblings, keep in mind that they are also going through some of the same emotional concerns and worries that you are. These may not be overt and conscious, but they are there. Talk to your other children openly about their frustration and worries about Tommy, without labelling or belittling him. Remember to keep the information age appropriate though and do not use your children as a therapist. Be open and factual with them; explain for example why you are spending so much time on homework with Tommy.

Engage your other children positively, so for example if Tommy’s brother also wants to take an hour to do homework because he wants attention from you – incentivise him to finish in 30 minutes and you can spend 20 minutes playing a game instead. It will make the time more enjoyable and less frustrating for both of you.

Three crucial aspects that came through through from the Handseltrust paper was how important alone time is for the siblings. Alone time with parents made children feel loved and less isolated and excluded, it eased the resentment and righted the time imbalance.

The other was the need for praise to be given to siblings, as they often see their efforts as less significant compared to their sibling with special needs.

The last one was remember that siblings may need added support, just like you do. So if necessary work on a support system for your children, potentially friends, cousins or people who will not judge and whom they can feel safe with. This may need to be in a sibling support groups and they themselves may need therapy one day to sort through their feelings.

Children with special needs can be very draining on their parents. Parents with special needs children often feel depressed, exhausted, and have high levels of stress. Whilst you are looking out for Tommy and your other children who is looking out for you? One of the best ways to meet your child and families demands is with your own TLC. Find a healthy outlet, and find a strong support system. This may not always be family.

As already mentioned there is no perfect balance, you can strive for balance and should. But something will fall short. An important lesson I have learnt is to strive rather for a balancing act. What I mean is that the scales will often tip in one direction for a while and this is okay but you need to be mindful to tip them in the other direction at times as well. So there will be times when you as the parent will have to take a step back and will not get the TLC you deserve. Then when you need to take some time for yourself, perhaps you and Tommy with feel supported and your other children may dip down on the scales. Importantly though at times lift your other children and spouse up, it is okay for Tommy to sometimes also dip down on the scales. Tommy may surprise you, he may become a little more self-sufficient, and he may hold himself together at this time. It is okay as Tommy does not always need to be at the top of the scale.

A quick recap on some of the points on how to create better balance:

  1. Realise there is no perfect balance
  2. Learn to say no
  3. Teach self-sufficiency
  4. Open communication with Tommy’s siblings
  5. Age appropriate communication is important
  6. Alone time with siblings
  7. Praise for siblings
  8. Engage Tommy’s siblings in positive behaviours
  9. Remember siblings may need extra support
  10. Parent TLC
  11. Parent support
  12. The balancing act and constantly realigning those scales
  13. Remember it’s okay for your child with special needs to also fall lower down on the scales at times.

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!