Tag Archives: ASD

Autistic spectrum disorder

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.

My child is different, now what?

It has been more than a year since my last post, which is way too long but it has been an extremely busy year. The year has been swept away with life in general and constantly being on top of my son’s needs. There have been so many new experiences and insights during the year, which I hope to share in time.

I have also embarked on a new career. I am now a supportive counsellor with a special interest in parents on a journey of specialised needs. I have been doing short informational talks on various topics around special needs. These talks involve a lot of research and time. They are proving to be very beneficial, and I think they would make interesting articles for my blog. Therefore in the interests of time and sharing – some of the articles I post will in fact be based on previous talks that I have given.

I look forward to continuing on this journey with everyone.

My child is different, now what?

Receiving a formal diagnosis or having friends, family or a school teacher tell parents that their child is different or even “there is something wrong, with your child” – the message can come in so many forms, is at some stage met with mixed emotions by all parents. The message may be surprising, shocking, devastating, even relieving. But it probably also comes with immense confusion as to now what?

• What do we do?
• Where do we go?
• Who can help us?
• Do we have to change schools?
• What about medication?
• What does our child have?
• What does that mean?
• What is the prognosis?
• How will we manage financially?

Sound familiar. The list is endless. The list is overwhelming.

The journey of specialized education needs is easier for some than others. This depends on the case and each parents own way of internalizing and dealing with the experience. The road is not an easy one, but it is also not all bad. It is a different journey to the one any parent envisages for themself, their family, their child. It is filled with more bumps, often bigger bumps and potholes – some of these bumps and potholes simply creep up, causing stress and even pain or anguish. The repeated crashing into these bumps and potholes can wear one down, but some much-needed TLC, can give one the strength to continue to navigate. As one becomes more aware of the terrain the journey becomes so much easier.

Through reading and interaction with others; here are some tips for making the path a little easier:

1. The most important – TLC – look after yourself and your marriage.

2. Create a good support system; this may not always be family.

3. Someone to talk to honestly about your child, and your feelings about your child.

4. Remember you are your child’s parent. Do not become their therapist or teacher, try not let their needs be all consuming.

5. A good supportive school system makes the world of difference.

6. A doctor you can trust.

7. Not exposing yourself to too many conflicting opinions and too much information. The Internet can be a blessed source of information but also a curse.

8. Take joy in the small wins. This journey will be made up of many of them. A parent who has a child with ADD – knows what a win it is when their child is able to sit long enough to concentrate on homework without a fight. A parent with a child with autism knows how liberating it is when their child is finally toilet trained or when they stop running away from you in a public place. A parent with an anxious child knows the joy of when their child is able to walk into school all by themselves for the first time. A parent of a child with dyslexia knows the pride they feel when their child reads their first sentence without a mistake. Never take these small wins for granted – they are the steps to bigger successes.

9. Lastly trust your gut.. Remember when your baby cried in the beginning, and you were never sure what they wanted. Soon however you knew what every cry meant, what your baby needed and wanted, when no one else did. With special needs some parents lose this instinct temporarily. Some parents may feel, how did I not know. Some parents may feel it very difficult to relate to their child, because they are so different. But parents are also the best champions for their children; no one will fight for your children like you will. The fact that you are trawling the Internet looking for help and support is already an indication of this.