Sema Cemal is a Chartered Psychologist with over 20 years’ experience in social policy research. She has held senior positions with leading research agencies (including Associate Director at the Harris Research Centre and Group Head at Burke Marketing Research) and later set up her own social research and consultancy practice. Sema has a Psychology degree and a Masters degree from City University. She also has a Diploma in Market Research awarded by the Market Research Society.
Born in London to parents of Turkish Cypriot origin, Sema’s parents were fairly traditional and their main aspiration for her was to get married and start a family, but she was determined to pursue her education and career – she found the challenges of balancing family life with the world of study and work difficult.
Sema is a single parent with two children, one of whom was diagnosed with Asperger’s Syndrome/mild Autism at the age of four and a half.
She has been through a lengthy struggle to get her son the educational services he desperately needed. Her story raises serious questions about educators and local authorities understanding of Asperger’s. It also raises issues of why some children get the services they need while others do not stand a chance.
Sema had to give up work when the fight to meet her son’s needs became a full-time job. Her battle has been on-going – to get her son a statement of special educational needs, to get him the support he needed in his primary schools, to get him into a suitable school and keep the support in place and to find him a post-16 placement.
There was a lack of awareness about autism and a stigma attached to disability within her own community – explaining her son’s diagnosis has not been easy.
Sema wrote an article about her battle to meet her son’s educational needs, which has been circulated widely (including her own blog) and has generated over 3,000 views. She also helps other parents trying to navigate the special educational needs system providing support and advice. She was a volunteer and Committee Member of the Enfield National Autistic Society and is a full member of the British Psychological Society.
School For Mothers: Who are the members of your family?
My son (diagnosed with Asperger’s) – aged 14
My daughter – aged 16
At what point did you realise your son had a hidden disability?
Around three years of age
What were the early signs that led to your son’s diagnosis of Asperger syndrome?
Limited eye contact with others, not very socially responsive (preferred to play on his own, avoided social interactions with others his own age) and a preoccupation with mechanical gadgets. I shared my concerns with my health visitor who referred him for an assessment and he was diagnosed with “mild autism – Asperger’s Syndrome”.
What was the journey you went on to secure your son a place in a school that could provide for his special needs?
It was a long, stressful ordeal – a 7-year battle which was costly, emotionally as well as financially.
Although he was diagnosed at a relatively early age (at four and a half), his needs were not met at the two primary schools he attended. He was misunderstood by school staff – teachers who did not understand or refused to acknowledge his needs, and who often punished him for doing things related to his Asperger’s (such as fidgeting in assembly). He was also picked on by some of his peers – pupils who singled him out as being ‘different’ (calling him names like ‘retard’, ‘idiot’, ‘stupid’ on a daily basis). He became highly anxious, depressed and school-phobic – dreading Sundays because he had school the next day, refusing to go to school, crying at the school gate every morning and having huge meltdowns at home.
After years of stress and daily confrontations with the school about inappropriate handling of situations, I reached crisis-point – was I going crazy or was the school failing in its duty to care for and support pupils with additional needs. School staff and ’so-called professionals/educators’ dismissed my concerns and questioned my parenting skills saying things like, “you need a good night out” or “stop worrying, can’t you see he is manipulating you”. After frantic online searches and conversations with autism/education helplines, I came across an autism education solicitor who asked me to send him relevant documents for him to review:
My brief – I am on the edge; is it the school or am I failing as a parent?
The outcome – his view was that the school had failed my son; that staff did not understand Asperger’s Syndrome and my son needed a Statement of Special Educational Needs (SEN) to set out his needs and the provision needed to meet those needs.
We applied for a statutory assessment three times but the Local Authority (LA) refused to assess my son each time. We had no other option but to lodge an appeal to the Special Educational Needs and Disabilities (SEND) Tribunal. Just a few days before the Tribunal Hearing the LA agreed to assess my son and issue a Statement of SEN. However, the Statement they issued was vague/woolly so we ended up attending the Tribunal; I went with my solicitor and two expert witnesses, armed with the evidence to support our case including three private assessments which I had to pay for – Speech & Language Therapist, Educational Psychologist and Occupational Therapist. The outcome = victory – we had won the battle! After a long stressful day at the Hearing; the Panel overwhelmingly agreed that my son’s needs were not being met at school and approved the provision recommended by our expert witnesses. However, it took a long time for the provision to start and six weeks after the provision was put in place, I was told the LA will stop or significantly reduce the provision (“he has made such good progress in the past few months that we are going to reduce the provision”. I had to face another battle to keep the provision – more meetings, letters and negotiations!
A few years later, an even bigger battle began – to get my son into a suitable secondary school. After years of research and school visits, I found an independent school which could meet my son’s needs but the LA refused our choice of school and chose two inappropriate schools – a unit for pupils with severe autism within a school under special measures (which the unit head told me ‘was a prison’ and not inclusive); and a special school for severely disabled pupils (which meant my son would not get the right support or have an appropriate peer group). We lodged an appeal and were given another date for a Tribunal Hearing to get the LA to agree to our choice of school. Again, just a few days before the Hearing, the LA contacted me to say they would approve our chosen school provided we paid for the transport. Another victory … but at what cost!
On the first day of school, I dropped my son off to the school bus stop. I felt anxious all day – so many questions in my mind (will he like the school?, will he want to go back the next day? ……). When the bus returned, my son got into my car and hugged me saying “thanks mum for getting me into the best school in the whole world”. I felt so happy – a fantastic feeling – it was worth the battle but I felt so ‘burnt out’ and the big question I continue to ask myself is “Why did I have to fight so hard for so long to get my son into a suitable school?”
My son has one year left at this school and I am preparing myself for the next battle – to make sure my son goes to a suitable sixth form college/school.
What did it take for you to continue to win tribunals?
Self-belief; a strong conviction that my son deserves a good education. I was not willing to take a risk in accepting an unsuitable school – In LA speak, ‘good enough’ was just not good enough. I’ve always believed my son is bright with the potential to achieve – I refused to cave in to so-called professionals who tried to undermine my son’s needs in order to cut costs, determined to ignore the evidence and opt for low-cost inappropriate options.
How do you safeguard your own sanity?
It has not been easy. As a single parent of two children, and having decided to stop working due to the ever-increasing workload of collating evidence of his needs and the stress which that involved, I decided to focus on my son. Whenever I feel I am losing my sanity I try to do things to re-charge my batteries – sauna, Jacuzzi and swimming, going to see a film or read a book – or vent out my frustrations on friends and family. Talking to other parents in a similar situation has also helped me keep sane – it’s really helpful to exchange ideas and support each other (makes you feel less alone).
You are an advocate for many other families these days, what does this typically involve?
After my long ordeal, I wanted to share my story with other parents so I wrote about my experience and started my own blog. I have been contacted by so many families who have read about my battle and asked me for help and advice. It’s a great feeling to help others in a similar position – this often involves giving advice by email, over the telephone or meeting up for coffee. Most of those I’ve been in contact with needed someone to listen to and empathise with their stories and wanted advice about the choices they face and support they can access.
What kinds of situations are you seeing happen more and more regularly for families with special needs children?
Budgets are being cut and, despite new legislation promising ‘child/family centred’ policies through the Education, Health and Care Plan (EHCP), the system is failing many families with special needs children. The so-called professionals are not listening to or responding to parental views. Parent’s choice of school is often refused so they have to fight harder and for longer to get the right outcome. Respite care is also harder to get and as services are being cut, parents are being refused this vital provision. One of the biggest areas of concern for me is the lack of mental health support for special needs children and parents – waiting lists are long and when you finally get to the top of the list and see a professional (i.e. from CAMHS) the support is poor and help is short-term; the increasing use of anti-depressants to treat young people is a ‘quick-fix’ cost-cutting measure which does not address the causes of poor mental health.
What are all-absorbing special interests about for children with Asperger’s?
I think they help them to cope with the anxieties building up in the day – for my son, the higher his stress levels, the more absorbing his special interests become. Special interests help the child to escape into a familiar world, free from judgement and criticism; a world he/she understands, feels safe in and has control over.
How do you maintain your stamina?
My stamina levels goes up and down. You try to keep going because you love your child and want them to be the best they can be. When they feel wounded and lost, you find the inner strength to keep fighting. If I feel really low, I lay low until I’ve got the energy to tackle the next task. When you feel alone and unsupported, the best thing to do is to connect with other parents going through a similar ordeal – talking to other parents helped me realise I was not alone.
What allowances has your other child needed to make in growing up beside her brother?
My daughter is struggling to cope with family life as a young teenager. A brother she finds annoying and difficult to relate to, and a mum who is stressed out all the time and seems to spend every waking moment on paperwork/conversations/meetings related to her brother. She has had to put her own needs to one side and try to support me by trying to understand her brother but ….it has been very hard for her and this is taking its toll.
What are the gifts of being a single mother?
Being in control – you learn to follow your instincts and do what you think needs to be done without interference or judgement from others. Building up your reserves/resources – managing without the help of others can be quite liberating, as you are not over-dependant on others.
What’s the link between special needs children and getting in trouble with the law?
As they get older, you have to give them space to be independent – to go out on their own, even if it’s a walk around the block or to the local shops – this is when you have no control over what happens to them. Although you understand your child’s needs, external agencies and Authorities do not. I have heard from so many families who have had their child sectioned or arrested for behaviour linked to their special needs. Police and other Authorities need more training to understand the needs of special needs children, and more compassion and support for those who are behaving in ‘antisocial or unacceptable’ ways.
What policy changes are needed to provide more than adequate provision for special needs children?
A commitment to providing quality care for special needs children – not just ‘good enough’ provision. Many are talented and have high potential – if you nurture these talents and abilities, the long-term costs to society will be reduced. A more ‘child centred’ policy and a more respectful attitude to parents views is the starting point – parents want the best for their child so it’s vital to listen to and act on their wishes is vital.
What is your opinion about the systematic offering of anti-depressives and other medications to children with special needs?
This is a worrying trend. Anti-depressants should not be given to any child; it messes with the brain and soul. It is a low-cost quick fix. However, if parents are not offered effective long-term therapy for or strategies to help their child, this is often the only option available to them. I understand why a parent would agree to let their child take anti-depressants especially if the child is suicidal and at risk to themselves and no alternative is offered. Many children are ‘falling through the cracks’ and ‘under the radar’. I understand the appeal of anti-depressants amongst mental health/medical practitioners – therapy takes time and is costly, but it’s a big risk to take. I feel really concerned and angry when practitioners say to me “Let him try anti-depressants, they work with some children. We don’t know how it works but it can help in some cases” or “If your son gets worse, go to A&E”. The help offered is often reactive and short-term!
What challenges does your Asperger son experience in his teens?
The challenges facing my son in his teens far outweigh those he faced as a younger child. As he grows up, he becomes more and more aware of his differences and feels less integrated and accepted. The single most important thing my son wants and needs is to feel accepted and socially integrated – without adequate support, he is becoming more socially isolated and feeling more alone. He feels depressed and his depression centres around lack of friends.
I am about to face the next major challenge – post 16 education. More assessments, more research into colleges/sixth forms, more stress, and more financial outlay. Do I have a choice I ask myself every minute of the day? No, I do not. I do not even want to think about the implications if I don’t get the next placement right. The battle never ends.
How can the social isolation of Asperger be reduced for children?
In Schools: More interventions to help them integrate with other pupils such as lunchtime clubs, befriending/buddying system, subtle/covert ways of helping them integrate. More training/support for school staff to understand the needs of pupils who feel socially isolated and strategies to help support them.
Out of School: More funding for/opportunities to mix with other Asperger’s children – local clubs/forums or special interest groups to help them integrate and be part of the community. Asperger’s is a hidden disability – and many of the anxieties center around lack of friends/feeling different /not being accepted – this can be crippling.
How come the parental needs of special needs children are all but forgotten and what would you like to see happen to change this?
If the child’s needs are minimised and dismissed, how can there be room for the parent? Parents are often targeted as the cause of the problem – over-bearing, complaining and winging, …this is the easy way to get the Authorities off the hook. Maybe it’s because parents feel so ‘burnt out’ that they do not reach out to form a united group to take on the Authorities and fight for the rights of our special needs children.
This can be changed if more parents get together to raise awareness of special needs and Asperger’s and form a formidable force – more united action amongst parents to campaign for change. There are many forums/charities but I think they lack creativity and impact – there is a need for more innovative ideas/action.
Who do you go to for solace?
I retreat into my own world, pray for calm and try to find the energy to take on the next challenge. I take one day at a time and try not to be too hard on myself.
And finally, what is the one common denominator between mothers? (beyond children)
Compassion – empathy – the ability to understand without judgment and criticism.
You can connect with Sema on her blog here