Living With The Impact

Brick Wall

The impact of having a child with Autism varies with everyone of us…

The question that is asked often and I know I asked myself on many occasions in the early days is how do I live with the impact ?  A question that has so much value to all on this journey, but an area I feel that is not shared enough… Having a child diagnosed with Autism is a life changing experience with highs and lows along the road which we travel.  We will hit pot holes, we will be flooded with information and we will become overwhelmed with every day situations and there will the be the obstacles that can be turned into opportunities…

Today what I would like to do, is share with you five tips that will assist you to understand how Autism can impact someones world if a member of the family is living with Autism…

1.The Urgency for things to be done is different for everyone…

When things go wrong we will want it sorted yesterday, but others will not see it this way… For businesses, professionals or service providers they see us as another client/customer and therefore will serve us in the same way as they do for any other person… Often their knowledge of Autism may be non-existent, minimal or based on other people’s perceptions, which for those living life on the spectrum know this makes life interesting as if you have seen or met one person with Autism, you have seen or met one person with Autism, as they may have similar characteristics but know one person is the same making each individual with Autism unique…

What this means is that we all need to be aware that families that are trying to access services for their children are going to become stressed very easily and with this these families need to understand that it will take time for others to see the urgency in a situation as we do… This applies to things like repairs of equipment as well.  I know our children don’t cope when things go wrong with technology, the issue is that for a service they have many clients and will not be aware of the impact of not having a device can have on our families, which means we need to be mindful that what we would like to happen may not always work out…  It is also an opportunity to educate others in having a greater understanding of how our lives are impacted by Autism…

 2. People will not understand.

 As much as we would like to society to be accepting and inclusive it is still a work in progress.  We need to remember that society views have only begun to change in the last couple of decades.  People’s perceptions have come from the views portrayed by the media, movies, people’s experiences and others observations, which is not always accurate and why we as Parents need to acknowledge that there will be people who do not understand and that is okay.  With education community perception is changing and part of my vision is to create greater acceptance and inclusion globally.

Unfortunately until perceptions change people will see our children as being naughty and we need to remember this is lack of education and understanding… There is no manual that explains this and like any child they are all unique and we have to do what is best for our family no matter what others may think, as you are the one living with the impact of how your child copes with different situations that occur in their lives and yours… Hold your head high knowing you are doing your best and ignore the rest or use it as an opportunity to educate others to increase greater awareness of how Autism impacts people’s lives…

Screaming and yelling may be typical in our world, but is not the norm for everyone and as hard as it is for us, one thing that has stayed with me is the realisation that we all fear the unknown, which means in some situations people that are watching when your world is crumbling is due to not knowing how to assist you.  It is not easy to stand on the outside watching someone trying to deal with their child not knowing whether you should help out or leave them be, especially as you can often see they are being ripped apart emotionally…You are human

3. Things Will Go Wrong…

As much as we would like life to be a bed of roses, there is always thorns that come with this.  It’s life as we know it, for us and as many people have not lived your life they will not be aware of the significant moments that can impact your life mentally, emotionally and physically on a daily basis in some cases… What people need to realise is as parents you can only do your best with the tools and knowledge you have at any one given moment.  As you learn and gain more knowledge you can then adapt and change your strategies to improve the experiences that you have…

You need to know that it’s okay to have a meltdown and let out all the built up emotions.  Everyone’s level of coping varies, so be kind to yourself.  Just because one person can cope, with a situation and another can’t has no relevance.  Our levels of coping vary based on our past experiences the emotional baggage that we already carry, along with the exposure to highly stressful situations will all impact how we cope when things go wrong… This can vary from the plans we make, meal times, outings, family photos, routines, to significant events which involve injury… You will experience most of this at some stage and that is all part of the journey but you need to remember no matter what be kind to you, as there is only one of you…

4. There will be questions.

Yes you will have lots of questions and so will others… Take your time to absorb everything that is happening in your journey as you are the one that needs to work out what this journey means for you, your ASD child, siblings, partner and family as a whole relating to now and the future…  There will always be questions, so don’t be afraid to ask them as you will find that often there is a simple answer and if there isn’t it will provide you with knowledge to assist you areas you may have not expected…

With having lots of questions be open to being teachable… Ask many sources and get varied perspectives, as what others believe is the best fit for you and your family may not be the case… Sometimes what is expected by others is not the path you wish to take or not the path that is ideal for your child and this will bring more questions to determine what is going to be in the best interest to everyone involved.  Remember they are your children and you need to do what you can to best assist them, but sometimes there may just be an idea that will work for them if we are open to embracing new things also…

5. Emotions…

Yes we all have them and they impact us all differently. How did you feel when you discovered your child has Autism ? What many people do not realise is they become engulfed in an overload of emotions.  Some they make recognise and others they may not as they present differently with all of us… The common ones include grief, failure, anger, resentment, fear… Experiencing these and more is not uncommon and does not make you a bad parent.  This is what makes you, you… It is something I feel is not prioritised enough as our emotions impact so much of what we do and often in ways many are not aware, so I ask you to allow yourself time to process these emotions to deal with what is happening in your life each day…

With our life changing so much sometimes we need to step away from what is happening and see life from a different view and I would love to give you this opportunity by joining our next FREE Online Embracing Change Event in June 2016….

http://livinglifeonthespectrum.com/embracing-change-june/

Embracing Change

 

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