My son has ASD (Autism Spectrum Disorder) and at the review of his Statement of Special Educational Needs in May 2018 at the mainstream school at which he was a pupil, the SENCO and the Case Manager suggested that my son’s behaviour was beyond the remit of the support that they had been offering, and it was put forward that a more specialised school be sought than the mainstream-with-provision schools to which the Case Manager had previously – and unsuccessfully – applied.
I had some misgivings: my son is a high-functioning boy with Autism, and he and I walk a fine line between operating in the ‘neurotypical’ world, with its parameters of social deportment and consideration for others, and the rather hazier realm in which he is perhaps not a spoiled brat but a boy with wiring that is not set for survival without a great deal of support. Example: you or I walk into a room and we more or less quickly identify where everything is and we draw conclusions about the intentions of the people that we are there to meet. My son, on the other hand, is hit with an onslaught of visual and aural stimuli, nuances of social interaction and his anxiety reaches levels found in a Kenyan shopping centre under siege.
The behaviour, therefore, that we see as challenging is in fact the manifestation of a challenged chemistry; the imperative for me, as parent, is to remain calm because, apparently, if I lose my cool then the subconscious knowledge that my child has that he is acting under an imposed script will urge the panic higher and escalate the behaviour. So it is that queuing, chatting and sitting quietly in restaurants cause a Red Alert switch to be thrown in my son’s brain, and chaos can ensue.
On the other hand, things might go better than expected, and my son can be an absolute delight. When he feels comfortable, when he isn’t too tired, or too hungry, he can behave in an exemplary manner. This is why I have always believed that a mainstream school with a supportive Hub or Unit staffed by people trained to help decode the behaviour and assist in the development of coping strategies is the best option.
In view of the situation in which my son and I now find ourselves, I wonder whether the mainstream school that he had to leave at the end of Year 2 made more of his behaviour and less about their own deficiencies, resulting in a new – and fruitless – search for a more specialist school for my son.
It is the beginning of October and my son is not in any school.
After a lengthy wait for any news from the Case Manager I was told, when I got in touch, that the schools to which he had applied could not “meet need” (his words) and that there was one which had expressed a desire to assess my son. The Case Manager was cautiously optimistic therefore that they might offer my son a place. The school in question did not get in contact and at the end of the summer holidays I attempted to contact the Case Manager again. After several unreturned telephone calls, I copied him in to an email in which I asked my son’s father for his help in resolving this uncertainty. He too nudged the Case Manager and these promptings resulted in a phone call from the Case Manager to say that he had urged the school for a response. When the school eventually did get in touch I was somewhat anxious due to all the waiting, and uncertainty and, now, the start of term for many children but not my son.
When two female representatives from the school paid us a home visit, one of the things I told them was that my son has had a couple of meltdown/tantrums during the holidays. These lasted for approximately 45 minutes and required the locking or barring of the front door lest he abscond on to a main road. When the school phoned me a few days later to say that they could not offer him a place this was one of the reasons that they gave – referring to a “volatility” that might upset the calm of the present Year 3 cohort and a “risk of absconding”. It strikes me still that a so-called specialist school for children with ASD, among other diagnoses, could not cater for my child. Of course he can be volatile; but what about their training, their Health and Safety (security of school grounds) and their abilities to respond quickly?
Adding insult to injury, they went on to say that they had recommended a school miles away, in Haywards Heath, to the Case Manager. 55 minutes away by car. For my little boy. A place so out of reach; especially in bad traffic.
I urged the Case Manager, in an email, to go back to the schools to which he had previously applied, within county, at a distance not more than 30 minutes’ drive away, and to apprise them of the urgency of the situation. I received no response.
A week ago today I sent an email expressing my concerns. These are several: in a bid to keep my son occupied and stimulated I have been hiring babysitters. This serves the twofold purpose of giving him attention and activities and giving me the opportunity to get to the gym and do the weight training and activities which help me, together with my medication, to manage my mental health. Babysitters cost money and, if I were in full-time employment, I could not afford the cost of childcare. As it is, I have had to shelve my studies because my son is my priority and because this distressing situation saps my energy. I want to qualify to train others in the fitness activities that give me so much in terms of mental, physical and emotional health and empower me, nine times out of ten, to stay calm. This is absolutely essential when you are the parent of a child with ASD. On top of this, I am a single parent. I get a great deal of support from my Mother, but she is 72 years old and she is not in the best of health, having been diagnosed with early signs of COPD and a lung age of 93. With two strong dogs to manage and a life of her own, she cannot be expected to co-parent my son to any greater extent than she does – and she does a lot. My son stays with his father on alternate Saturdays and I have been trying without success to get some respite, as I qualify as my son’s carer as well as his parent.
The social worker who visited us last week agreed that my son is high-functioning and, as such, does not qualify for a great deal of support. However, in his opinion it is imperative that I receive support. He was here for two hours while I related my mental-health and medical history and circumstances. He is going to try to urge the Case Manager to expedite a resolution to my son’s lack of a school place. He is also eager that I should contact supportive organisations, and he gave me a list of these to try in order to get some respite for myself and some company and play activities for my son.
I haven’t yet been able to go through the list because I am busy writing letters and emails which I am going to send to everyone involved in education and county council provision of a school place for my son.
Wednesday 3rd October
There was an interesting development yesterday, when a representative of Access2Education visited my son and I at home to meet us and to gather some information to enable the formulation of a learning plan for him. This representative did tell me that their role is not to find school places for children per se; but that their involvement can enable case workers’ focus not to slip from the goal. She did, however, say that it seemed pretty remiss for my son’s previous school to allow him to leave without a schoolin place for him to move to, since one of their roles should be in aiding a smooth process of transition.
My son does qualify to attend a Youth Centre three mornings a week, at which some semblance of educational provision takes place as a stop-gap until a permanent school place is found.
Later on yesterday I received a telephone message from the Headmistress of my son’s previous school, to enquire about how my son is settling into his new school! While I think this is very sweet (if rather hypocritical, since it was her school who suggested the move) I will, in due course, let her know that between her SENCO and the Case Manager, a fiasco has been engineered, one result of which is a boy on the autism spectrum remaining isolated and falling behind a curriculum which he already needed support to access in the first place.
Together with the costs of childcare, the stress, the fact that I have had to put my own career-focused studies on hold and the ever-increasing boredom of my son coming out in ever more teenage ways (swearing at me; throwing things), I have reached the maximum level of pressure that I am prepared to handle.
I will be escalating my complaint to the County Council, the Department for Education and Local Authority Head of Children, Learning and Families (if this is indeed the correct title); heads will roll.
Thanks to my being on the correct medication and thanks to my continued dedication to a fitness regime, I will be seeking redress. The situation has gone beyond merely ridiculous. Owing to the referral, by the Case Manager, of my son to “Access 2 Education” it can accurately be termed a travesty.
ASD: on being a special-needs single parent 