Isolated, frightened and desperate for help is how a mum from Margate describes her situation as she battles to get mental health support for her son.
The mum, who has asked not to be named, says her 11-year-old son was diagnosed with ADHD (Attention Deficit Hyperactivity Disorder) and ODD (Oppositional Defiant Disorder) when he was seven but has received only medication despite pleas for help with his behaviour.
The 30-year-old says she has been left to cope alone with her son’s highly unpredictable and aggressive mood swings and, as he gets older, is increasingly unable to deal with the outbursts.
The boy was first seen by professionals when he was three-years-old as he struggled to adjust to being in nursery. He went on to St Gregory’s school but was excluded at the beginning of Year 4 for assaulting a teacher.
He was referred to Orchard House, which provides emotional and mental health support for children and young people, aged 6 and received his diagnosis a year later.
But his mum says he has had no access to therapy, despite being told this would be available to him from October last year, has not been assessed since diagnosis and has not been seen by a professional in any capacity for at least 18 months.
Intent to hurt
In a plea to Children and Young People’s Mental Health Services the mum wrote: “**** is being treated for ADHD and ODD, however he is displaying the following behaviours – destruction, intent to hurt people and animals, violence, persistent deceitfulness, lack of empathy and remorse. This is persistent and not occasional despite boundaries and routines set at home and in school. I am very worried about my son’s future if he doesn’t get the help he needs now.”
But the mum says no help from NELFT (North East London Foundation Trust), which runs children’s mental health services in Kent, has been forthcoming and says her emails are often ignored until she threatens to lodge a formal complaint.
She said: “He struggled immensely in all his years at St Gregory’s, spending the majority of his days on detention and having me supervise him for lunchtime. I decided to apply for an EHCP (Education, Health and Care Plan), which I got with no support, and he was then sent to Little Oaks in Ramsgate and had 1-1 tutoring.
“He joined Palm Bay primary where he displayed very challenging behaviour despite their best efforts and they helped push for him to be sent to a special school. He then joined a specialist school where he still struggles.
“He has recently got worse, his teacher is struggling and there is a problem every day where they need to call or email me. The school has sent a long report to children’s mental health services to say he desperately needs to be seen.
“I am struggling. I am a single parent and have no help from anybody. My life is limited to when he is in school as his behaviour is so difficult I cannot take him out of the house.
“One minute he will be excessively happy, rolling around the floor laughing, and the next he will lash out and be extremely aggressive. He blurts out random things and cannot be left unsupervised.
“I’ve not been shown how to restrain him safely and he is a strong boy, nearly as big as me now, and I can’t leave him with anyone to give me a break. He just doesn’t understand cause and effect, he has no empathy and just does things.
“I feel isolated. I’m a very private person and I feel like I have been forced to reach out just to get someone to listen to me.”
In tears
The mum says she made a call to Orchard House last week asking for someone to see her son and enquiring about the promised therapy but was told the sessions were no longer an option because she had taken a NVR (non-violent resistance) course to try and deal with his behaviour back in March.
She said: “I was crying on the phone, saying someone needs to see him and help now and the lady offered me a phone appointment for 10 days time to review his meds. I said I need help now and she said that’s the best she could do.
“Where do I turn? Are there other parents housebound on their own, with a violent unpredictable child that have no support anywhere? I just don’t know what to do, we need someone to come and see what’s going on and to help us.”
‘Priority’
NELFT has been delivering children’s and young people’s mental health services in Kent since September 2017 via a contract transfer.
A NELFT spokesperson said: “Due to patient confidentiality, we are not able to discuss individual cases or patient treatment.
“Caring for our patients and providing them, their families and carers with support is our priority. We know patients’ conditions and circumstances can change, so we conduct weekly reviews of those waiting for treatment to identify any high risk patients.
“We stay in regular contact with patients, providing clinical assessments and reviews if needed and encourage them and their families to let us know of any developments to their condition so we can re-triage and re-assess the care they need.
“We are continuing to work closely with commissioners and the wider health and social care system to support children and young people in Kent and Medway.”
What is ADHD and ODD
Attention deficit hyperactivity disorder is a condition that includes symptoms such as inattentiveness, hyperactivity and impulsiveness.
Those living with the disorder may have a short attention span, be constantly fidgeting and act without thinking. ADHD can often be treated with medicines and talking therapies.
Oppositional defiant disorder (ODD) is a childhood disorder that is defined by a pattern of hostile, disobedient, and defiant behaviours directed at adults or other authority figures. ODD is also characterised by children displaying angry and irritable moods, as well as argumentative and vindictive behaviour.
The 11-year-old described to a teacher how he feels, saying that “he feels like there is a fire inside him that is his energy and this fire gets bigger until he can’t hold it in any more.”
He needs men in his life to oppose his behaviour physically
A very illinformed comment. Are you advocating threatened violence against a child with a disability?
Agreed
Scary that these children will be adults in the community soon and they could do some serious damage to the public. Shame on the lazy overpaid services that won’t help
I do not think that children’s services are staffed by the lazy or overpaid sadly they are underfunded and understaffed due to a government who claims to be placing additional money in services , this money has not materialised.
You utter fool. This boy has multiple problems. I feel for the mother. She is obviously trying her best. A ‘man’ will only be stronger physically and that is not the solution.
I think you may be right. Boys need fathers!
My son as the some problem he was diagnosed at the age of 16 at Orchard House. He is now 34 no school could cope with my son not even a special needs school and he went to four of them and all turn their back on him. My husband and myself struggled alone to deal with my son’s behaviour and out burst and violent tendencies. no one could care for him or look after him for us we never had a break. Even to this day there is never been one person that stepped up and said they could help. He still struggles on a day-to-day basis to deal with his condition. So I know exactly what you’re going through and my heart goes out to you.
destruction, intent to hurt people and animals, violence, persistent deceitfulness, lack of empathy and remorse. Sounds like most people nowadays.
The authorities need to pull their finger out & do something-because it will likely not be too long before he attacks somebody who will wipe the floor with him.
No, it doesn’t sound “like most people nowadays”.
My son too has ADHD, ODD and severe autism – life is unbearable at times. Marion, you are not alone.
Before any numpty starts spouting ignorant rubbish about bad parenting these are mental disorders.
Well said I agree with you.
My heart goes out to you. You sound completely desperate. The services are so inundated that those who need support are often left to source their own support-
But this is easier said than done.
My daughter has been under camhs since September 2018. I really would like to contact you to help in any way even if it’s just a chat by phone.
Caring for a child with these difficulties can be extremely exhausting. It pervades every aspect of the child’s life and the person or people who care for him. Stress will be present for every waking hour either because he is having a violent episode or his carer is waiting, never knowing when the next one will occur. This poor lady must be feeling careworn and burnt out. She and her son both deserve help.
I experienced exactly the same limited service several years ago. I had to deal with it all by myself. He was diagnosed Autistic at 16 in CAMHS St Peters, but has traits of ADHD and ODD too. It was a nightmare and you feel like you have no friends or help. I was pleading for help but got none. It seems nothing has changed even though this government promised the services needed would be increased.
I would suggest the lady looks up support on the facebook groups. There are some very good ones, and at least she can find people living in the same situation as hers. Often they suggest ways of dealing with things through their own experiences. Good luck !
These issues are real. Nothing to do with being a single mother another blame game on women who are doing their best to raise children single handed- we should clap for such mothers. NELFT contract needs terminating & the Commissioning group find a new contract that serves young people effectively. With home working they are getting worse, with no accountability at all. I really feel for you. Parents going through what your going through should really come together and raise these issues with local MPs. MPs represent you & your son for the NHS to deliver. People would be on the streets if this was happening at QEQM hospital. Why is this acceptable for Children & Young people mental health services. 2 year endless waiting lists, terrible service, no Specialist or proper therapeutic intervention only resorting to medication. A report on experiences of similar children to your son was done 2 years ago…nothing has changed. It’s really unacceptable and should change.
I’m so sorry to hear about what you are going through with your son, I had some bad experience with my daughter at Ocherd house. Although they pushed her for autism diagnosis but they missed out the actually problems she was going through with. She suffered with depression and Anxiety. She is in medication now, but this was too late, as the problems was not resolved earlier and she was forced to leave two schools and studed from home,although this didnt go well neither, we have bern through a lot. She missed her six form exams due to lack of support even through I cried out for help at Orchard house. It was even harder when she got to 18 yrs of age. No one really paid attention other than getting the medication. My daughter is 19 now, and diagnosed with ASC and ADHD. She is much better now thank she was and she is trying to work on what she enjoys doing, so less pressure and demanding.
I hope you get help that you need.
You are not alone. If you would like to contact Me for a chat, here is my number. 07868522378, I am also doing my third year of degree in autism and work with people with mental health issues and ASC. I feel having an undestanding of the behavour can help.
I really feel for you. My daughter is 7 and I have had to pull her out of school recently she has been waiting 17 months for a assessment from greenbanks they suspect adhd,asd, and pda I got her referred as she was self harming at the age of 5 after she started reception class shes already been in 2 schools and just couldn’t cope was always in time out or calm down class. Her behaviour improved after leaving school but any big occasions like Xmas she just goes nuts in the last 4 days she has broke her bed cut holes in her mattress cut her hair and drawn all over the walls and cut holes in my clothes I have had to put locks on all the doors put stair gates up hide all knifes and scissors and pens I have contacted nelft about 12 times never had a response and I contact greenbanks weekly but it is what it is as they say. I have to stay awake till she is asleep and she stays awake normally till 3 am then wakes at 7am. I really hope you get the help you need for your son
I had exactly the same thing and I insisted that my son go to great ormond Street,best thing I ever did.pls ask for their help
So many parents going through tough times with their kids and with so little help & shocking waiting lists… Something needs to be done about it 💔 I feel for the children too 💔
You are not alone, I myself have a son who was in the same position, pumped with meds and left alone to cope with all the emotions. There is help out there but unfortunately its not readily available and you need to fight for it. After years of fearing my own child I took the drastic and desperate step, I walked into a social services office and refused to leave until we received help, my son and I sat there for 5 hours(well I sat, he destroyed the waiting area) but we got the help we needed. We got a social worker, he was placed in a specialist school, who are amazing, he started a youth club, had councilling ect that was 5 years ago, now 16 he is in college and planning on joining the army when he is 18. Right now you will feel like you have no fight left in you but trust me its there. You just have to dig deep and fight. Good luck
My son had ODD when he came to live with me as hes mum was neglecting him an we were told by professional doctors that odd is bad parenting skills an theres no medication they grow out of it
Somtimes these outbursts are driven by sensory issues. A specialist Occupational Therapist trained in Sensory Integration might be able to offer advice on equipment and calming techniques. There is a unit in Crowborough called ‘Starjumpz’ that specialises in Sensory work for children, perhaps give them a call for advice. There are many sensory integration aids such as weighted blankets, noise cancelling headphones etc available to buy but I would advise seeking an assessment first.
I am an OT but not trained in sensory integration. Good luck.
I know that this won’t help in the short term, but it might help others in the future: please, please contact our MP, and describe to him as graphically as it you have here, the dreadful problems you’ve had to endure.
The more people that put pressures on the MP, the more likely it is that he will respond positively.
To many residential specialists schools have been closed. So no respite care available to help these children and parents. Wouldnt it be easier if there was a team of mental health professionals visiting schools rather than parents having to wait months for appointments. They could visit 10 schools a week this way. My heart goes out to these parents i have worked with children with challenging behaviour, due to mental health issues. It is tough.
I’m assuming it’s un-intentional but the writer has named the boy in this article.
I must have missed one, thanks for highlighting