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.

Exploring bullying in a special education environment

* This article is based on some best practice currently on bullying and was written specifically for dealing with bullying in a special education environment.

Once I was having a chat to someone about bullying, and the person likened the word bullying to the word racism. “It is the new swear word” they said, “it gets used all the time.” However bullying like racism is a serious allegation and is not something one can be flippant about. My interpretation of the message was; one needs to be sensitive in the use of such words, as they carry a lot of weight. The term bullying is often bandied around in describing undesirable social interactions between children.

What is bullying?

The definition of bullying is repeated interpersonal behaviour, which is intended to do physical or psychological harm, typically between children, with unequal power. Three important aspects for me in this definition are; intended, repeated, and unequal power. (Child Trends, Data Bank) What I found interesting in the research was a child’s interpretation of bullying. Children perceive bullying as an act or message conveying rejection and hostility, causing them to feel lonely, isolated and powerless. (Childline, UK) The link between these two interpretations is the power imbalance. Bullying is about a demonstration of superior power. An individual being stronger than the victim or a group being stronger than one can demonstrate this. Bullies are often older and bigger, but not always.

Types and causes:

Bullying can be physical coercion, hostile teasing, emotional bullying, or harassment over the Internet and social media. In the USA targeting a victim around physical appearance and stature is the most frequent type of bullying. This is followed by rumours, hitting, slapping or pushing and subjecting victims to sexual comments or gestures. Negative comments about race or religion are the least noted. Any feature that is different may be used in bullying.

These different features are however, not necessarily the cause of bullying. The causes of bullying are not really known and there is much controversy about this. Our thinking as parents is that usually those that bully come from problem homes or are on the fringe of society. The latest research shows that bullies are often not the psychologically troubled kids, or those who are on the margins or the fringes of the school’s social life. It can be the kids in middle, at the heart of things, the well-liked popular kids also bully. Often bullying occurs due to power imbalance as already mentioned and sometimes due to loyalty issues, for example when someone falls out of a group, they may be bullied. Bullying also occurs when someone does not conform to social norms. Children feel like they may have to punish those who do not conform, for example in my day the “nerdy child” would have fallen into this category.

Research has also shown a link between bully and victim. A child may be bullied at one school, then move to another school and all of a sudden they become the bully. It is noted that the higher students rise on the social ladder, the more they bully other students, and the more other students bully them.

Was that bullying?

Bullying is a confusing and complex matter but how much of what goes on is actually bullying?

Children often sort their problems out physically. Many of us will remember being at school, running onto the field shouting “b-a-r-n-e-y, b-a-r-n-e-y.” Kids sometimes settle their disputes with a fight. In my school going days, it was common but these days it may be seen as bullying. I am not justifying the physical fights of our childhood and yes sometimes they were children bullying other children. I am questioning how frustrations among friends are dealt with today? If a child hits another, yes it is unacceptable, but is it bullying?

Problems are also resolved with name-calling and with the aim of hurting another person’s feelings. Remember – “Sticks and Stones may break my bones, but names will never hurt me.” Such an awful saying, as we know this is not true, but it shows fighting once again of our generation. Even though name-calling is nasty and hurtful and also needs to be dealt with, is it always an instance of bullying?

Children play pranks on each other. Some are harmless others are not. They bog-wash, they urinate in bottles and give it to their friends to drink, they stick notes on each other backs saying hit me, all unkind behaviours that should be addressed, but once again is it bullying?

Bullying in special education schools:

In special education schools there are a variety of children with many differences:

  • There are children with social issues such as autism. Children on the spectrum often have no filter and they say things without intending to do harm. Children on the spectrum may also repeat these comments, oblivious to the emotional context.
  • There are children with sensory issues and if they are feeling overwhelmed, cramped for space, things are too noisy, things are too bright and for many other reasons, they may push a fellow student, shout at them etc. in an attempt to get away from the source of their sensory overload.
  • There are children with leaning problems, who may become frustrated easily after a long day at school, resulting in low frustration tolerance and lashing out.
  • There are children with ADD, who may have impulse control issues and hit another child, intentionally, yet actually unintentionally.
  • These are but a few examples

What does it all mean?

It does not mean that pranks, name-calling and physical fights are acceptable and sometimes they need to be addressed, as they can be harmful and hurtful. It does not mean a child with ADD can get away with hitting another child, without some form of a consequence. Such behaviours do need to be addressed in order to teach what is appropriate behaviour. However as a parent, try be sensitive to what is going on. Investigate the event before bullying accusations are made. Assess if the behaviour is repeated and has the intention of hurting others, and the dynamics of the power-imbalance.

What to do in an instance of bullying?

If you feel your child is actually being bullied, here are some tips:

  • First talk to your child and determining whether they have, in fact, been bullied, and ascertain if they feel safe or not.
  • Although it is instinctual, it isn’t supportive to your child to just jump in and defend them without knowing exactly what happened.
  • Investigate the problem or offence with the person on duty.
  • Remember victims, perpetrators and bystanders will not necessarily give an accurate description of events. This occurs for various reasons.
  • Refrain from immediately trying to schedule a meeting with the parents of the child doing the bullying.This can turn into conflict between adults, which can get ugly quickly.
  • Report the incident to the school. They will follow a specific process with regards to bullying, which should be in the schools code of conduct or guidelines booklet. You are entitled to obtain this from the school office.
  • If it is repeated bullying; chronicle what happens, what staff were around and what they did, what the impact has been in terms of emotional distress, how the alleged bullying behaviour may be interfering with the child’s education.

Tips for children:

There are many interventions for bullying, but most success comes from not letting the cycle begin, this can be done by:

  • Engaging with children around the topic bullying.
  • Educating children that bullying is not only destructive but also ineffective.
  • Empowering children to identify issues and solutions. This applies not only if they are being bullied, but also to teaching children ways to effectively handle fights and hurt feelings which can often eliminate the start of bullying.
  • Teaching bystanders to stand up against bullying.
  • Teaching children about the different types of students they attend school with.
  • Normalise insensitive behaviours of others with empathy and not with name-calling or lashing out.
  • The age-old adage, “mind the company you keep”. Research shows when students are aggressive; there’s a higher likelihood that their friends will become aggressive.
  • But there’s also the possibility that positive behaviours can spread through social networks and that kids may be more likely to intervene in bullying situations if they see their friends stepping in to stop things, or if they see their friends discouraging that kind of behaviour.
  • The influence of peer pressure should not be underestimated.

 If your child is being bullied:

  • Empower them and build up their self-confidence, in order to change the power imbalance.
  • Send them to a professional if need be to debrief and learn skills on how to deal with bullying.
  • Sometimes you may need to ascertain why your child is being bullied. There are instances where this is because the victim is actually the instigator. There are instances where a child may be both the victim and the perpetrator.

Oh no my child is the bully:

As already pointed out bullies come from all walks of life and victims can become perpetrators. If your child is the bully, parental involvement is essential in stopping the cycle of bullying:

  • Acknowledge the problem.
  • Be hands on.
  • Decrease violence exposure in the home which includes TV etc.
  • Teach positive behaviours.
  • Teach empathy.
  • Explain how bullying harms and also it is ineffective.
  • Bullies often themselves, suffer from low self-esteem.
  • Seek professional help if necessary.

My aim is to get you to think about bullying in a different, more critical way. I think if parents can engage in the topic with a fresh open process and see all sides of the bullying paradigm then the resolution to bullying can be more effective. Bullying is a sensitive topic and what one thinks is going on may not always be the case.

A journey into the world of special needs children

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