Tag Archives: special needs

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.

Battling the inconsistencies

Children are unique with each having their own character traits. Children with special needs can sometimes be clumped together, based on their diagnoses. I would say sometimes correctly so, as certain groups of special needs children will have very similar traits, however I do admit that this could be my bias and this is based on my experience as an outsider of other special needs groups. My experience is with autism and yes children with autism all get clumped together when it comes to the diagnosis and even sometimes the recommended treatment, yet the causes, symptoms, manifestations, behavioural issues, cognitive ability and treatment protocols vary drastically. As pointed out in the article, “The vast spectrum”, autism is a diverse and complex disorder with no best-case practices applied across the board.

Autism is inconsistent from case-to-case but I also find that even with my son, he is so very inconsistent. We never really know what we are going to get from day-to-day. I don’t know many parents who have children on the autistic spectrum, who experience the same inconsistencies as we do. I am however sure that he is not the only anomaly.

Our son varies from day-to-day, hour-to-hour and even minute-to-minute. We never know what to expect, which makes parenting and education even more of a challenge. For example he sometimes speaks so coherently and beautifully and at other times he can suffer from terrible non-fluency. His thinking can be so clear and lucid and at other times he is so unclear and even irrational. Socially he is so approachable and personable, yet at times he suffers socially and is inept. His schoolwork can be done so carefully, with thought and patience or at times rushed and messy with no interest. There are the things he can do and the things he cannot do and there are the things he will not do. Unfortunately we never know which it will be. Then of course there are the behaviour issues. He can be an angel and even a terror, good and outright naughty (yes he has the ability to be naughty). His behaviour is also so inconsistent and vacillates constantly. His behaviour not only affects his disposition but also his ability to learn. If he is in a mood at school he does not learn at all. His inconsistent behaviour also unfortunately affects our ability to do many things as a family. Certain outings such as movies, theatres and restaurants are a real challenge. He can be so happy and calm and cooperative and then suddenly so sad and moody and angry. Medication has helped to date, but it has by no means helped extensively. The one thing he is consistent in, is his inconsistency.

We are unsure why he is so inconsistent. Did he not sleep enough or did he sleep too much, did he not eat enough or did he eat too much, has he got stomach ache, is he anxious, is he down, is he sad, is he sensory overloaded, is he hot, is he cold. The list is endless and if we think we have found the cause this time it will not be the same next time. Even though he is a child who is verbal, he himself does not know what is wrong or bothering him and cannot express this in words. For now it just seems that this inconsistency is his own unique set of symptoms that comes with his autistic spectrum diagnosis. Seeing his “good side” and all he can achieve, his glimmer of potential, his sparks of genius is amazing and keeps our hopes alive that this can one day become more consistent and less fleeting. Our focus is on unlocking the inconsistencies and making him more consistent, especially in his strongest areas.

For many parents in the battle with autism, this is the one area we all experience consistently, the ability to unlock our children’s potential no matter what it may be.