I am a mother of three and have just self-published a book entitled 30 Days of Autism, which is a guide of sorts to help parents and carers of newly diagnosed children gain knowledge and understanding about ASD (Autistic Spectrum Disorder) from a parental perspective.
In the book, I share anecdotes about our personal experiences in relation to each chapter to provide both context and, hopefully, some relatability.
In my job role, I also support parents with autistic children on a 1:1 basis, as well as facilitating a support group for parents and carers whose children and young people are autistic or have ADHD.
I have a seventeen year old son with a dual diagnosis of autism and ADHD. He also has Sensory Processing Disorder and communication delays. He had spontaneous speech regression at two years of age and was completely non-verbal for a further two years but has since regained a lot of his verbal communication, although it is still significantly delayed and he accesses Speech and Language Therapy via his school.
We are currently in the process of transitioning him over to adults services.
Due to where he sits on the autistic spectrum, transitioning to adult services has been an extremely straightforward process as his needs are quite high and he requires a lot of support to complete many everyday tasks such as preparing meals, getting himself ready and generally keeping himself safe. This is a whole new arena for both of us and I definitely have some learning to do regarding his rights as an adult to advocate for himself despite his severe learning disabilities, and my rights as his parent/carer to continue to advocate for him where appropriate.
My son currently attends a special school which provides provision for children and young people aged three to nineteen years and has attended there since he was five years old. The curriculum is tailored to meet him at his level and enables him to learn in a variety of ways such as through cooking and going out into the community to purchase snack items for the class.
The school is spread across two sites in order to accommodate the growing population of pupils in attendance, with the younger children and those with complex needs on the main site and the further education students on another site. He is currently on the latter site in preparation for him to hopefully move on to the local college where he will continue to learn new life skills and possibly find something he loves and is good at.
It is difficult at this stage to know how well he will manage this change and if the college will be the right environment for him, but we have to try and hope for the best. To be fair, he is doing brilliantly in his current class so, chances are he will continue to thrive at college. I have heard many positive things about the courses they offer and, if nothing else, he will benefit from the continuation of having structure and routine in place.
He also accesses short breaks within his care package and stays overnight at a local respite facility for four nights per month. He loves it there and looks forward to going each time, particularly as they have a large garden with play and exercise equipment, as well as a large trampoline- and he is amazing on a trampoline! They also build on the skills he is working on both at home and school whilst he is there, such as preparing food, washing and dressing himself and accessing the community (pre-covid).
In preparation for this we are in the process of being invited to consider the adult respite provisions available, however they are very different to his current provision and due to his complex needs, may not be the right fit for him. We are currently looking at respite provisions for him to go to once he ages out of his current one and, unfortunately, for those with more complex needs the only option appears to be a provision outside of the borough.
I had never considered having to send him to a respite provision which could potentially be at least thirty minutes away as I would find it a little worrying to know that if there was ever an emergency, I would not be able to get there quickly enough and would struggle to relax.
There have also been occasions when I have forgotten to pack things for him, or there have been issues with my son’s medication and I have had to drive over to his current provision to deal with them. As this is only a short distance from my home, it is easy enough to drop things off but to have to drive to a provision thirty minutes away and home again only to discover that I need to repeat this journey because I forgot to give him or them something is off putting to say the least.
I know that this is something the LA are currently looking into and hopefully a solution will be found in the next year or two so that we can benefit from it.
The difficulty is that we have become so used to him having time away, which benefits all of us, that for him to no longer have access to respite will be difficult for the whole family. As well as the opportunities it provides for my son to access activities and go on day trips with his peers, it is also a time for me to do things with my daughters which we are unable to do when he is with us, such as shopping for hours (he wanders off) or having their friends over without being concerned that he will appear undressed at any moment!
I am more fortunate than many families as I do have a supportive network of people around me who are willing and able to offer respite when they can, however he would still be losing out on the additional support in relation to building on his life and social skills he gets when at his current provision.
On the verge…
I often forget that my son is ‘on the verge of manhood’ because cognitively, he is no older than three or four years of age in many areas. He is very energetic, he likes to be active, to go out and do various activities. He still loves going to the park and squeezing himself onto the slides which he is far too big for or sitting on the roundabout whilst I spin it as fast as possible. He still plays mimicking games with my youngest daughter or the neighbours’ children, copying them if they roll down hills or make silly noises.
His TV programmes of choice are those for pre-schoolers, and he asks for toys for Christmas and birthdays which he should have outgrown over a decade ago, yet I will continue to buy them for him because I recognise and acknowledge that he has not yet moved past that developmental stage and may never will.
Rather than moving him on from these things before he is ready, I allow him the time and resources to continue in that phase because it is important to meet him at his level, to go at his pace and enable him to reach his full potential, whatever that may be.
He will not be able to participate or engage in the usual rites of passage when he turns eighteen such as getting their first job, learning to drive, going out drinking with friends or going off to university, therefore adulthood has no significance to him and yet it changes everything.
There are so many things to consider such as benefits, bank accounts and managing his money, medical needs and where he will live in the future, that it can be quite overwhelming and a worrying time, particularly in relation to other people potentially making decisions for him and facing the prospect that one day I may be unable to care for and support him.
I have made plans for him to remain with me for as long as possible and to live in a self-contained annexe on the property should he be capable of living semi-independently, but with that comes the realisation that that will not be possible forever and I may have to think about residential care or supported living for him at some stage.
For now, though, we are taking each day as it comes and celebrating every bit of progress, no matter how small, because it shows just how far he has come.
30 Days of Autism…
In my book, I have a chapter on how parents may be feeling post-diagnosis, and in some ways, it can feel like going through that process again when your child is transitioning to adulthood. You are thrust into an unknown world once more which you must navigate whilst supporting your now adult child. The way in which parents will manage this can vary greatly and will also depend on the support they receive from the professionals involved. Below is an excerpt from the book:
“Being told that your child is, or possibly is autistic is something which affects everyone differently. Some parents may feel relieved, accept the diagnosis and move on whilst others may struggle to come to terms with it, seeking out numerous opinions in the hope of hearing something different. Some parents may blame themselves and feel as if they did something wrong during their pregnancy (which they did not) whilst others may feel a sense of loss for the ‘normal’ child they had expected to have but did not get, or even started out with but then they changed and regressed. Some parents may be concerned by the ‘label’ it will place on their child and might not want to pursue a diagnosis due to the stigma they believe can be attached to such labels, or they just might not feel a diagnosis is necessary.”
Whilst feelings of loss and grief will not apply in relation to the diagnosis, they may apply in relation to the support they received for their child whilst they were under children’s services which may be different when they transition to adults. It may be the loss of the paediatricians, school staff or other therapists they mourn who will no longer be involved in their child’s care, and fear or concern that they may not build up the same relationships with future professionals.
I have been fortunate throughout this entire journey to have had practitioners who have listened to me and respected me as the best and strongest advocate for my son at every celebratory and difficult time in our lives.
I very rarely felt unsupported and that remains true today. His school, paediatrician, clinical psychiatrist and social workers have ensured that this transition goes as smoothly as possible and, although there are things which I do not agree with regarding certain provisions, my opinions are respected, and I always feel heard.
Working with families, I have found that this is not always the case and is part of the reason behind writing my book to provide parents with the knowledge and skills to be the best and strongest advocates for their children now so that, by the time they begin transitioning over to adults services they can manage it with confidence.
I am passionate about empowering parents and enabling them to believe in themselves as professionals in their own right because we are the experts in our children and our input is invaluable.