College refusal (sorry this is long)

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Hello,

Thank you for replying and for the very helpful advice.  My original post was over two years ago.  Since then, my son's period of non-engagement has just continued.  He never returned to college and, despite my greatest efforts, he has not taken any training, education or employment since.  He is now 18 years old, physically strong, but locked in a series of routines surrounding going to the gym working out what to eat and going for long walks to get his steps in.

Occasionally, he tries for unrealistic goals like being a car dealer in Europe or joining the Marines, but I think, perhaps, these are designed to fail.   He will not engage with any services (medical or careers and so on) and I simply try to keep his spirits up.

Basically, I am worn down with it all and worn down with the  anxiety it causes me when he says he is going to kill himself.  The next minute, he is bright again and chatting about becoming a paratrooper or a You Tube entrepreneur.   No medical professional will do anything because he has mental capacity and refuses help.

I feel that your child's lack of engagement is a consequence of how he was treated. The first conversation you had in the carpark (you, teacher and son), could have had a really negative effect on your son. I feel so angry that the teacher could have done and said that. I really hope you can find more a caring and understanding college. Even one teacher who is prepared not to judge so quickly and harshly and can see a potential to be nurtured and can just be patient. Patience is so important. As is not jumping to conclusions about kids. Ignoring seemingly "non engaging" behaviour would go such a long way. Please don't give up. There have to be people out there who either can help or who have learned to help. I hope that the first teacher and the subsequent people who have let your son down will be reached by advocacy and continuing education. Things have to change, things will change. I feel you are part of that process, and the teachers and supposed learning support will learn from you and your son. I'm sorry it has to be so hard for you. It shouldn't be this way. 

Hi Hobble,

Please don't apologise for posting again, it is good to hear from you.

I am coming on here less and less these recent weeks as my own heart turns ever colder; I really don’t want to pass my ice onto others; I would always prefer to share warmth and hope where I can, but I too am so bone weary of it all (fighting, life) sometimes.

Did you get any further with the thought you once had about looking to see if there are any alternative providers who may offer mechanics courses or similar? I imagine the NEET Team would perhaps know of these places in your local area, so even though they are dragging their feet about dealing with your son’s referral, maybe they will offer some alternatives to college that your son may feel able to try?

It’s all a constant (painful) waiting game isn’t it? I can only offer that the NEET Team would be very used to kids who can’t or won’t ‘engage’ for various reasons and so; perhaps there is hope; that this team may be more understanding and able to meet your son’s needs?

We can only hope.

I think this is why Pandora left it (hope) in the box- it is all we ever really have?

Big hug.

Hello,

I apologise for continuously adding to this post, but I just wanted to update about the situation and, perhaps, to try to make sense of things.

I contacted our social worker a week or so ago because I had heard nothing form the college or the Assessment and Review Officer.  My social worker sent an e-mail back to me saying that the A and R officer had just contacted her before she went on leave to say the college were willing to give my son a 'second chance'.  She said she did not know the details e.g. when this chance would begin and what support may be in place, but she would come and talk to my son the following day, about what he wanted to do.

I was a bit lost because I did not have sufficient detail to prepare my son, so I just said that the meeting was to plan with him what he wanted to do.  He said he did not know what he wanted to do, but he was not going to college.

We had a brief chat with the social worker.  My son refused college outright and refused even to talk to the Learning Support Manager.  The social worker asked if he wanted to meet someone from the 'Prevention Team' which is a team that provide outreach for young people who are NEET and he said 'OK'.  The social worker said she would, therefore, sign him off the Child in Need  Plan and pass him on to the Prevention Team.

Another week has passed and we have heard nothing.  I have contacted Children and Families Services to see when we might meet someone from Prevention.  They are still processing the referral.

My son now engages in fewer activities than he has done at any time in his life.  He has nothing in the way of education, training or social life.  I am trying to support him to go to the local volunteers service to see if there is anything he could do, but he keeps backing out of the appointments.

The situation is not helped by the fact that my eldest son, who is in residential care, is going through a rough patch as well.

I know I should complain and demand better services, but I really have lost faith in the system.  They totally failed my eldest son and I complained frequently and at high levels.    I feel they are failing my youngest now or perhaps there really is nothing anyone can do if a young person will not engage.

Hi Hobble,

OH! How can this be??!! I just can't understand how he can have all this stuff stated as required on his EHC Plan and yet it is not being provided for him. It makes a total (and distressing) mockery of the whole EHC Plan process which is intended to be there for this very reason; to offer kids that need it a 'different way.' Have you contacted IPSEA? They may be able to advise you on what you can do when people are ignoring an EHC Plan.

Although I do hear you too: about how, if you try to act on the grounds of his college not providing him with the adjustments his EHC Plan states are required, you fear they will simply blame him for 'not engaging.'  

I still think there are avenues you can go up officially regarding this (such as the DA?) as, even if college do try to blame him for 'not engaging,' you can simply point to his EHC Plan and say- when did you provide this so he CAN engage? etc. But its still all such a distressing and tiring battle that you shouldn't have to be fighting.

And fighting these things through 'official' channels may be energy spent that may be better spent elsewhere (such as on your other good idea about seeing if your son can access other training providers like he did once before with the Mechanics course.)

I am so sorry that the professionals and the (legal) structures in place that are supposed to support vulnerable families and individuals are significantly letting you and your son down here.

It makes me ever more determined; in my job, in my life, to keep fighting hard, every single day, for our NDs;  'Until everyone understands...'

Hello,

Thank you Spotty T.  I am sure that your life is not a 'nothing life'. The very fact that you contribute with such sensitivity and understanding shows you are compassionate and caring.   Yet I do share your fears about what could happen to a 16 year old, who finds it so difficult to engage and my fears are compounded by my eldest son's experience.

The situation is complex and my son's refusal to engage or inability to engage is a huge barrier to his progression in life.  For example, he obviously has problems with anxiety, but he has been discharged abruptly from CAMHS because he will not (cannot) engage.  We were on a Child in Need Plan previously, but this was stopped because my son (and his brother) would not engage (they locked themselves in the bathroom when the social worker visited) and, in the case of education, representatives of the local authority will say (as they have already started to say) that they have provided opportunities and support is available, but if my son will not engage there is nothing they can do.  Once that happens, my son will become even more fixated in his routines and I will seek medical advice.  Contact with education will cease temporarily because he will be a 'medical case'.  Yet this is not 'medical' in the sense of an illness from which he will recover.  My son's anxiety and autism are intricately interwoven and so far, he has learnt that if he does not engage with services, the services will stop.

Heather has contacted me and I have taken her advice and got in touch with the Education Rights section of the NAS.  The responsibilities of the LA towards a young person with an active EHCP have been explained, but they will argue that they will provide what is necessary and the problem is my son's inability to engage.  They provided a personalised learning pathway for my eldest son, but this never worked out because my eldest son could not access it due to his levels of anxiety.

Yet, on a positive note, I have had time to reflect.  Over the years when he could not attend (refused) school, he managed to attend a mechanics workshop.  His father drove him there and back (it was just one day a week) and, although it was terribly difficult to get him to attend (I stood outside the building with the programme lead, talking to my son for nearly two hours on the first day before he went into the building to see a rare car) once he got there he stayed.  The pivotal factor which made the workshop a success for my son was his relationship with one of the tutors.  He worked exclusively with the tutor and they worked on cars (one of my son's interests) rather than bikes.

When my son began to access the PRU, he did so because he had built up a positive relationship with his tutor.  Again, he worked on a one to one basis with that tutor.

I have tried to isolate characteristics of the tutors with which my son engaged.  I think primarily, they found out something about my son and they showed their knowledge of subjects in which my son was interested.  They were not threatening, but they still managed to be firm.  It is a long shot, but if education or social services could provide someone who could build up a relationship with my son and  help him access something, even a part time programme, this would be a fantastic leap forward.

So, today, I will send out requests to the people with whom we  are working to see if  someone will  act as this link (if he will not engage, then at least they have tried.  If he will engage, we may have a breakthrough).

Please will Heather - Mod or someone pitch in here?  This another young person possibly slipping through cracks to end up with a nothing life like mine when there are a lot of other possibilities. 

HELP REQUIRED. 

Hello,

Thank you for the very helpful reply, Angeldust.   My son does have an EHC Plan.  It state SEMH as his primary need and recommends a gradual transition and a small group as two strategies.

We were supposed to go for an interview to the other college this morning, but my son has blatantly refused to attend.  I have sent our apologies  tot he tutor and we will try to rearrange.

I have also asked the college that he has just left if there is any progress with respect to accepting him back on the course, but, as yet, I have had no reply.

My son is adamant now that he will not go to college.  I think his experience has been negative so far and he now feels it is all too late.   He is talking about car valeting, but training costs £300  and I do not know if I could afford that or if it is the right thing to do.

Yet, as you say, I feel there has not been sufficient effort to meet my son's needs and this does need addressing.

Hi Hobble,

Really glad you are still posting and reaching out to the community for support during this really difficult time.

I am so sorry that you are trying your utmost to enable your son positive outcomes and yet those around him seem to be creating more barriers than they are alleviating.

I really do believe you need someone on your side to fight these battles with you now. I do recommend contacting IPSEA or NAS and requesting if they have any family support workers who could help you through this.

From what you have said, it sounds as if the professionals you are trying so hard to work positively with are STILL wrongfully interpreting your son’s presentations and behaviours (sitting away from adults during meetings etc.) from a Neurotypical perspective which is NOT appropriate. Whereas I (and likely everyone else on here) can see VERY clearly that yours sons behaviours are a direct result of his Autism and are not indicative of him ‘not wanting to engage’ but are absolutely common and directly due to his Autism.

I would hope that, if you contact IPSEA, NAS or even any local Autism charities in your area too, they may at least offer a family support worker who could come to meetings with you and back up all that you are repeatedly and desperately trying to tell them about your son’s presentation of autism and the effect it is having on his ability to ‘engage’ with his course and during meetings etc. Having an ‘Autism professional’ with you in this way can often make other professionals sit up and take notice where otherwise (sadly) they may choose to simply ignore parents.

It may be the case that your sons past has been a difficult and complicated one, however, his past should not be clouding professionals from acknowledging and working positively on his current and future needs. Please do not give up. You have been through so much; you hang on in there a little longer still.

Does your son have an EHC Plan? I ask as, it is not good enough that the professionals are suggesting that, because your son is 16, he is now his ‘own man.’ Although it is very important to take his views and wishes into account, his autism means he is actually a very vulnerable young man and his ASD may mean that he may not be as able to appreciate the repercussions of his actions as easily or ably as other NT teens his age. And therefore his Autism may be impacting upon his ability to fully understand what is happening (in meetings and with his course) right now and the impact his actions or behaviours are having on his future. How can the professionals around him offer in one statement that he is not ‘socially mature’ and in the other, that he has full ‘mental capacities?’

An EHC Plan has a Section A which is specifically intended to detail your son as a person, and the ways in which his autism impact upon him personally- such as ‘In meetings * will sit off to the side- this is not any indication that he is not engaging with the meeting, it is simply because, due to social difficulties his Autism creates, he finds direct eye contact and sitting in close proximity to others uncomfortable and anxiety provoking etc. If this was all detailed clearly in an EHC Plan, the professionals you are dealing with would be hard pressed to complain about it and have no grounds for misjudging these behaviours in future.   

For this reason alone, I would apply for an EHC Plan if you don’t already have one, EHC Plans are intended to be in place until a child is 25, and may, amongst other things, offer your son some much needed protection (and acknowledgement) as a vulnerable young adult who is not as emotionally mature as his peers. And help you plan an appropriate (and much needed) pathway for him through further education and eventually into the workplace. I would apply for an EHC Plan assessment as a parent specifically with the repeated statement that ‘lack of understanding regarding my son’s autism and needs is currently and actively barring him from accessing higher education, training and employment’. (If you apply for an EHC Plan assessment and are turned down, there are then other avenues you can go down to try to get them to change their mind and grant your son an EHC Plan assessment.)

And the college saying that a staggered approach is not something they offer for anyone suggests to me that they are not prepared to make reasonable adjustments in order to enable equality for their dis-enabled students, which may be potentially unlawful. What exactly has the college offered in the way of reasonable adjustments?

I would therefore be tempted to approach your local Disability Advisor (DA) at your LA too and inform them about your son’s specific difficulties in trying to access his college course as they may take up your case with the college as being a case of potential discrimination/inequality? Sometimes just involving the DA is enough for education establishments to ‘remember’ that they can help more and miraculously make adjustments to their ‘usual practices.’

I really do know that this is a lot of additional stress and work for you (going to the DA, applying for an EHC Plan) when you currently feel worn out, and all you want is for your son to simply be enabled to access higher education. But I hope you can get NAS or IPSEA on board to help you; and going through the EHC Plan process and involving the DA if needs be may be the best ways of ensuring your son is not left behind, misunderstood, or negatively judged again in future by those who are supposed to be helping him.

Big hug.    

Look on the bright side.

Your son has a mother who cares!

Hello,

It is difficult to gauge how the meeting went or if anything concrete was achieved.  However, my son's social worker, the Assessment and Review Officer and I met a few minutes before the Learning Support Manager (LSM) arrived from the college.  

I recounted what had happened to our social worker who was not aware of the full story and she said she thought it was rather hasty of the college to recommend that my son left the course and the institution after such a short time and for reasons which really pertained to his recorded needs.

When the LSM arrived  he said that my son had made it clear that he did not want to be at college and he did not want to be on the course and this, coupled by his refusal to attend, had led to the decision to withdraw him from the course.  He added that the college had no alternative courses for my son. 

I explained that my son often said things to save his self esteem and that when he says things like, 'I don't like this and I can't stand that' and so on, perhaps what he is really saying is, 'I am scared and frightened and i feel everyone has given up on me'.  I added that my son had said recently that he 'was not sure' about returning to college and this showed he was not entirely negative.

The LSM said that he would go back to the Curriculum Team and see if they would consider letting my son go back on the course.  He emphasised that he was 'only'  learning support and that the decision about accepting my son back on the course lay with the Curriculum Team.

I asked about a gradual return or a part time programme and the LSM said that this was not something the college does for anyone.  When I mentioned that my eldest son is undertaking  a phased entry to college at an institution a few miles away, the LSM said he did not know how this was possible.

When I raised the topic of a contingency plan, just in case my son could not return to the college or in case things broke down again, the representatives of all three agencies shook their heads and said there was nothing they could do!  They said my son is 16 and has mental capacity, and if he does not wish to attend college, he does not have to.  I pointed out that he was also too anxious to set foot in a workplace and that the college course was designed to help individuals to overcome barriers to employment, they repeated that there was nothing anyone could do.

My son's social worker was present because this was the first Child in Need meeting after a very long Child Protection Plan for my son (and his brother before he was 18).  The boys have had a tough time and their problems have been complicated due issues related to neuro-diversity, developmental delay (manifested as social immaturity) and mental illness.   My youngest son does not trust adults because, basically, adults have not treated him very well.  I felt very angry that I had to explain the reasons why my son might sit at the other side of the room when he was in a meeting with a group of professional adults who then proceeded to tell him he was not engaging, was not participating, he was failing and he was not as 'good' as other young people who has buckled down and worked so that they could be 'moved up' from the course. 

I had to explain that he has been emotionally and physically abused in the past and he has had allegations of abuse raised against him when his brother has been unwell.  Everything is stable now and there is no danger of  actual harm (my husband/ his father and I do not live together) but he is at risk and no-one seems to care.  He is desperately unhappy and over the last three years he  has seen the break down of his school placement, the break up of his family, police intervention with respect to his brother (all charges dropped), social workers recommending foster care because he could not live with his father (due to the fights they had) and he could not live with me (because I lived with his brother) and finally, he has seen his brother deteriorate and end up in long term residential care. He has no friends, no social contacts (although I have tried all sorts of groups) and now, no education or training.

We have a close and loving relationship, but each time situations like this arise, I break a little more.  I feel like I failed to protect him  before and now he is at the point where all the systems have just given up on him.

I know this is long and depressing reading, and I certainly do not talk like this to my son.  I will drip feed him positives about the meeting and hope that the college will give him a second chance.  He also has an interview at the other college, 15 ,miles away, and if that is any good I will make sure he gets there, even if I have to sit in the college Reception to make sure he stays in class.

Good luck for the meeting Hobble, it's very sad to read how little support your son has been given to help him have a meaningful and contributory existence. Us older folk ruefully look back knowing that we could not have been diagnosed or helped as children because the diagnosis simply didn't exist/wasn't recognised, but it seems there are many young people still slipping through cracks which is heartbreaking.

I hope someone listens to you this afternoon and has something constructive to offer.

Hello Angeldust,

Thank you for this reply.  I am going to a CiN meeting this afternoon and the Learning and Support Manager for the local college will be attending, so will the Assessment and Review Officer for the local council.  

I agree with you.  The tutor's comments were unfortunate, but the college has not really given my son a chance and to advise him not only to leave the course, but to leave the college because he is having problems with attendance so early in the term, is not being inclusive and is certainly not good practice.

I will let you know what happens.:)

Hi Hobble,

I really feel for you. It sounds as if you are doing everything humanly possible to give your son great opportunities. However, I cannot help but feel that his college placement did not do the same.

Expecting your son to engage, attend and contribute in class within the first two weeks of term is ridiculously short sighted of them. I have known ND teens who take six months or more to even speak to anyone in their class, sometimes including their teacher.

And I am wondering if their lack of understanding about your sons Autism may have contributed to him not attending as, if they are prepared to kick him out so quickly, it makes you wonder whether they were appropriately supportive of him during his classes with them.

It’s so deeply frustrating as, from your post, it sounds as if your son was fully on board with attending prior to him going there which shows, importantly, that your son does desire the opportunity to try new things and make a go of it, even if he may need extra help and adjustment in order to access them successfully.  

It’s always a really difficult decision when you come up against organisations which are not Autism friendly as the dilemma is often ‘do we keep fighting until they do understand’ or ‘do we cut our losses and seek alternative solutions?’

The only thing I would gently offer is ‘don’t go quietly.’ By this I mean; I might be tempted to explore and exhaust ALL avenues before willingly ‘handing in his badge.’ Education providers have certain duties and responsibilities towards their students, which I think can sometimes be easily (sometimes intentionally) forgotten by them.

If you can, hang onto his current college place, even if he is not currently attending, don’t let them take him off role quite this easily yet. Make other professionals earn their titles (and wages) by putting the problem in their laps, turn the tables on them; what are they going to do to enable your son to attend, what are they going to do about this problem, try not to let them put this problem in your lap alone as they have so far seemingly done. It is not a simple case of what are you or your son going to do about this situation. It is more a case of what are you ALL going to do to resolve this situation positively for your son, together?

Ringing the NAS helpline (as Heather-Mod suggested ) seems like an excellent place to start to find out and then assert you and your son’s rights to access further education and attend his college course. Contacting IPSEA may also be helpful too. A link to their website is below:

https://www.ipsea.org.uk/

Best of luck.

Hi Hobble,

I'm sorry you and your son are having such a difficult time.  I suggest you contact our Education Rights Service where information, support and advice is provided on educational provision and entitlements. Please see the following link for further information: http://www.autism.org.uk/services/helplines/education-rights.aspx

If you don't find the help you need there, do post back here and a moderator or community member will try to help you.

Kind regards,

Heather - Mod