In this Autism life we expect the child with Autism to be central in the family’s world.
Yet, throughout the journey there must be two other elements that must stay also at the centre, and they are the Siblings and the Parent or Parents raising them!
The entire family matter!
If one element is out of place it cannot work. To suggest the child with the Disability is more important or is more special throws the whole establishment out of balance, because one cannot flourish without the other!
When Jay was born eight years ago we had two other children whom we had brought up in the Neurotypical way, and these two children were nine and twelve at the time of Jay’s birth.
Bringing up Jay in the beginning , before we knew of his condition, was fairly straightforward, and although I had many suspicions, we just lived a ‘normal’ life. The children were always lovely to Jay and they really bonded with him, despite their large age gap.
When Jay turned three, and his Autism and Delay began to show itself, life became a lot harder. I believe this may have been the darkest time for us all, as we truly did not understand or know what was wrong. At this time my relationship with Jay’s Dad was more strained. Our life with Jay suddenly became stressful every day and for our older two, who were now a little older and heading for teens, i think it was also harder, as our little boy was no longer happy. I have discussed what happened at this stage before, as Jay began to struggle in the world and react with distressing results and more hard to manage times followed. We could not go anywhere without full blown screaming ( meltdown) and our familiy outings became thwart with stress and after a time we began to take this out on each other. I am talking of snapping, and trying to find ways to manage Jay’s meltdowns and arguing over the stress-we were only human and we were not always as able to handle it as we are now five years on. It is important that I tell my readers the way it was. This is the truth and I am not here to skirt on the harder side of life with a child with Autism as what would be the point? I wish to share the more trying times too and the way in which we slowly adapted and learned how to deal with it.
Because a lot of time was going into keeping Jay happy and calm and in dealing with really hard Meltdowns all day long, myself and my Husband forgot about each other and our relationship. We had zero time together to relax. I was working in a stressful job as a Manager of a pre-school, and my husband was a Team leader in his job. Our family life was full of the stress of coping with Jay, as at this time we could not help him as we did not know what was wrong. We only knew that he was different. We would take time out singely and so one of us was always there for Jay. At this stage we found the older two were also finding things hard. Jay’s OCD meant that every time they came into his space he would scream and push them away. Dont get me wrong he adores them, but they were supposed to in their space and him in his, and he defended that space sometimes physically. Between age three and diagnosis at five, we were on a journey of discovery, yet we did not know it at the time! It is only now I can write this and reflect on what was probably the hardest time of our journey, with dark times between myself and Jay’s Dad and for ourselves as a family unit.
It is prudent to say at this point, that many families split over Autism and likewise conditions. It is a fact! The stress levels of Parents with children with Severe Special Needs and the Siblings are higher than average, and this results in their health suffering. Both physical and mental health can be affected. There are many parents who have Autoimmune diseases brought on by the stress and I am one of them. Never mind that though, as this is not important for now, the point remains that it is very very hard to raise children with SEND and only Parents who do it know-truly know how hard it is!!
Luckily, our family did not split and we found our way through the darkness to discover that there was light at the end of the tunnel.
I made changes at work by stepping out of my Managerial role in to a senior role and went part time, and my husband also changed roles and so that was a start.
Once Jay was on the path to becoming diagnosed I began to research the condition more. I put to good use my Professional knowledge, when I realised Jay was actually delayed at Development age two. That was my speciality age so I began to use statergies I used at work to help Jay. The introduction of a Now and Next board, the increased understanding and awareness of sensory isssues all resulted in our taking a more pro-active approach to Jay’s care. Simply using Ear Defenders on outings and at home, and using a SEN buggy all contributed to an ability to cope better with him, and his ability to cope grew once he was de-sensitised by these items.
Yet we still had to find balance. Our Ying and Yang were well out by this time. Years of no sleep, stress and sometimes sadness and grief at what we realised was for life, all took its toll on us as a family, yet we were not going to give in! We all found a strength, I know not where from, to endure, and to also conquer this condition and find a way to live with it. You understand, it was never Jay himslef who made us feel this way, only his Autism and Delay? Jay has always been a valued, much loved member of our family, and his gifts and special mind are loved and valued by all of us!
With five of us in the family, all our needs were not being met. My husband and I attended Training to help us and support us in caring for Jay and along side this they also offer Sibling Training too. This is given by the local County. Siblings are always going to need help. Our local charity who provide our Respite have many support mechanisims in place for Siblings. They understand that Siblings need a break from home and the caring side of Autism, and they need respite too! Our family care package which provides our budget for Respite, also takes into consideration the needs of the Siblings too. In the assessment process for Respite, their needs are recorded and Respite is provided with the whole family in mind. Often the siblings can feel left out or they feel they do not have as much of the care from their Parents, as they are too busy dealing with or looking after the child with Autism or SEND. They may have to listen to Meltdowns all day, or have their sibling invade their space or the child may expect the sibling to go along with their OCD traits. This happened to us and does still. Jay seeks control of his environment in order to manage his Anxiety and this affects my older two in many ways. For example, they are not allowed in the lounge wihtout Jay pushing them out. We do explain to Jay that he must not do it and this will often end in a Meltdown as Jay simply does not understand why this is wrong! This is Autism! They see only their own agenda and the Anxiety they deal with all day, each day, is so overwhelming that the only way they can control it is to have rituals and OCD rituals to help calm them. It is NOT naughty or bad behaviour and luckily my two older ones are, in my opinion, exceptional in that they get it , understand, and never get cross with Jay. I am very proud of their ability to handle their brother, love their brother and find a different way to enjoy time with him.
Having said that, they still need a break and respite gives them time in their own home, when Jay is on a trip with the charity, mainly just to have peace and the house to themselves wihtout being affected by Jay and his Autism. It makes them better people and Siblings, as when Jay returns and they have had a rest, they then are ready to understand again and help and support Jay. Like I say, I am so so proud of them both!
Ross, April, and Jay. Happy times together!
As a couple, Jay’s father and I, now have a well rounded happy life, and we have only got there due to the desire for knowledge on Autism, attending of Training offered, reading, learning, applying for Respite and learning every little thing we could about the complex condition that is Autism and Global Delay. We have , now, a high level of understanding of the condition and of Jay, because each child is unique, and also a desire to be the very best Parents and Carers we can be to Jay and also to Ross and April too! We have spent years working up to this moment. A moment when Autism no longer fazes us or worries us. We simply, as we say in Yorkshire, ‘crack on’ and get down to the task in hand, which to to support, care for , nurture and love our child with Autism and to meet his complex needs any way that we can, and without judgement on each other or the stress and constant worry we had five years ago.
No Parent can reach the stage we are now at, without COMPROMISE!
You have to have a period of adaption. I now realise that those hard three years , was in fact our period of adapting.
That we adapted and grew together, is perhaps a sign of our strength in each other, and a determination to grow and to succeed, all of which takes a calness of mind, an honest approach, communication with one another and love. We know now , that during our hard times in the early days, we were not communicating with each other. We were just winging it, struggling on, without any real goal, and it takes understanding gained from study to really get there, and you really have to ‘want’ to get there. To discover how to have a calm happy life with Autism and all it’s challenges within your household, you must first give a little of yourself to become knowledgeable and up to speed with the condition, and with the Internet and all the ways we can find out about it, there has never been a better time to learn.
We did not have this knowledge or ability in the beginning and seriously, until Jay was around six, and he is only eight. So you can see there, that it has quite honestly taken us three to four years to acheive this goal and of course, like many things in this life we still continue to learn and grow.
I just adore and love my teacher Jay-my inspiration, my joy, and my dear child and I am blessed to have two strong and caring nearly grown up children to love and cherish too, and a Partner, whom I have grown to love even more throughout our Autism journey!
As they are now Ross (19) April (17) and Jay at 8. Jay’s Dad Ade and I!