College anxieties

auri38

Hello , I have an 18 year old son who has right hemiplegia, autism , and arfid . He never leaves the house unless its to go to hospital appointments or college. He only  has virtual friends , so college is his only life line to reality. My son is doing creative media level 3 which is a huge achievement in itself!  As arfid is an eating disorder which makes his food intake very limited .. literally only eats chips ! So he is very tired and suffers with fatigue and constipation which effects his moods. He also suffere whith immense anxiety! He has an ehcp. He enjoys media and last year got a distinction with only 50 % attendance.  The start of term has been a  shambles from day one at college . With teachers getting changed and timetables altered,as you probably know that's not a good move in a autistic person's life . So  with a rocky start , anxieties began kicking in ! Whenever my son has anxiety he gets himself into such a state he gets a headache goes pale white , like he has has  the life drained from him , and becomes exhausted and needs to sleep. Without reassurance and definite answers , like knowing who his teacher is or having a timetable that doesn't change. Or even knowing he had a adult that he could go to if he had a problem. There was nothing so he didn't particularly enjoy going to college.  He was given a new teacher on a Monday which didn't go down to well!  He didn't think he knew about my sons needs or if he did he didn't show any empathy ! 2 hours special effects lesson on a Monday morning with a new teacher  work load was more then he expected and he felt under pressure from the work he was told that was expected of him! My sons anxiety over the weekend before the Mondays lesson was extreme!  He wouldnt sleep all weekend be short tempered and not eating food , due to worrying about the Monday. My son kept  expressing he couldn't handle the extra work load , and asked me to speak to the college .I expressed my concerns to the senco and head of department, that the extra work load is worrying him so much that he wants to quit the course. Nothing was addressed, but Mondays would come and he wouldn't go in, usually could he had been up with headaches sickness bad stomach the night before from anxiety and not getting to sleep till early hours.  He went in for his lessons the rest of the week but refused a Monday.   After chatting with my son he also expressed his concern regarding his course topic. It was horror ! He may be 18 but he acts more of a 12 year old infact he is scared of childrens TV programmes , he can't differinate fictional characters and real life ! He sleeps with the light on and he said he⁰ cannot cope with the horror side of his media course.. If he is scared at home he will become violent and lash out  .Being scared effects his mental health  . His peers do not need to witness him in a scared state which would embarrass him  and cause even more anxiety.  Obviously I had emailed the college regarding this , and raised my concerns that I didn't want him to quit the course due to a 2 hour lesson ,  that was causing him distress but didn't get a response. Another teacher questioned my son regarding his absence on a Monday, he told her that the college didn't respond to my mum's emails. But this caused him so much distress and worry  he was mortified the teacher had asked him. He has never bunked a lesson or had a detention in his whole school life or been in any type of trouble . So he was embarrassed that the teacher questioned his whereabouts .Dueto this  he refused to go into college for rest of the week . I emailed the teacher who asked him why he was absent on a Monday, to explain I was awaiting an email from the Head of department regards my sons concerns on a Monday but hadn't had a reply, few hours later  I get a reply from head of department . She said my son would have to attend the special effects horror lesson and that she thinks he's in line with his peers to acheive this .  She  hasn't  listened to me or my son , he can't cope  with his course he is overwhelmed by the  topic  and he says if he is made to do this part of the course he will quit altogether . The college couldn't care less about him. It's clearly about achieving grades and statistics.  They said it's part of the exam boards criteria.  Surely they could assess him on the rest of the course ! Anyway I expressed it wasn't just about the qualification it was now detrimental to his health as it was his only life line . I asked for a virtual meeting as a matter of urgency on 16th January, I haven't had a response from the college so I've now got hold of my sons case worker . I just want my son to have a normal life as possible...but there's no help not from anyone ! It's been a battle from day one! Any input would be great 👍  thanks 

Ross_Alumni

Hello @auri38

Welcome to the community, I'm happy to see you join this community of friendly and welcoming people. 

Thank you for speaking so honestly about what you and your son have been going through, it sounds like a really difficult situation and I can understand why you are so upset and frustrated by it all. 

How are you and your son at the moment? You mentioned in your post that he can become violent and lash out on occasions, which I'm sorry to hear, please ensure that you do your best to keep yourself and your son safe, and if you ever feel as though you aren't safe please seek some immediate support.

Do you have any support at home such as from a partner? I'm not sure if your son has had a needs assessment through your local authority, but it might be worth seeing if he can access any support to make things more manageable for him, you can read about needs assessments here on the NHS website.

Regarding his education, it seems as though whenever you or your son have asked for help, nothing has improved or changed and there doesn't appear to be a collaborative approach from his education provider and others involved. One suggestion I would have is to seek some professional advice from somewhere like IPSEA (Independent Provider of Special Educational Advice) who you can reach through this link.

Is your son in regular contact with his GP for support with managing his conditions? Has his GP or other medical team been able to advise on ways in which he could navigate some of the challenges posed by his conditions?

I will also tag in @L_Volunteer, in case she has any suggestions here.

L_Volunteer

Hi @auri38

Thanks for reaching out to us. I always appreciate how much courage it must take to reach out. I hear you. I am really proud of your son for getting a distinction even though he has been going through so much.

I want to reassure you that I understand. Not just from a professional perspective, but also because I live with autism! (And have family friends with autism too). Change can be one of the hardest things to tackle. I will reassure you that the start of term is always the rockiest with change because it seems to be when staff are the least confident in the timetable themselves.

Once your son’s college is more familiar with the timetable and things get more settled into place, visual timetables can be a fantastic way of providing the needed structure. You can also then make sure staff inform you when changes are going to happen.

For now, it will be about supporting your son when changes happen. That will likely mean making sure the college is aware of what helps to calm him down when he is anxious or having a meltdown/shutdown. For me, this looks like a sensory break, but your son may be the opposite and need more stimulation and that is okay too!

Regardless of whether your son needs a sensory break/more stimulation, I think the college should be aware of what supports should be put in place when this happens. I hear you say your son has an EHCP, are the supports listed in the EHCP currently being followed? Because those are the supports your son’s college legally has to follow.

In terms of being overwhelmed with the amount of work, I think it could be useful again to talk to the college. It could be that the expectations aren’t clear for him or for the college. For me, it has always been that I am a perfectionist and take their instructions literally so I think the work must be completed as soon as it is given. If this is the case, it would be best for them to set him smaller pieces of work with more regular deadlines, to ensure he is only working towards manageable outcomes at a time. If it is the college, they need to understand him more. It could also be that they send you the workload and you help to manage the workload given at home across the days. Other things which might be useful include colour coding lists according to priority and/or putting work in colour-coded trays.

I think it is crazy that a media course has to provide horror. I was thinking you were going to say criminology! Is your son able to change topics within the course? Because I can imagine different topics would involve the same skills. I would really encourage some mediated discussion with the college here. It is not fair that your son wants to drop out because it is too much based on their preference. However, if your son does continue to want to drop out, I am wondering if (a) you can talk to the college about similar courses? (b) you can look at media courses at other colleges, or (c) begins at a lower academic level?

I hate to say ‘begins at a lower academic level’ as I appreciate your son is where he is because he is more than capable. However, when I first started college, I couldn’t handle it. I often had meltdowns at college. It was only by beginning at a level 1 rather than a level 3 that I was able to gradually build the other skills, and then combine them with academics. I can confirm I am now at level 7 (a Masters degree) so it didn’t stop me, but it just meant my journey was longer than initially anticipated. However, if I didn’t take it at my own pace, I think I would have left at the beginning and not progressed onto further study or university.

I hear you haven’t yet received a response from the college. I am really sorry to hear about this. I think you are doing amazing in trying to reach out for the support needed! Your son clearly has an amazing role model and advocate. Does your son’s college have a contact policy? For example, some say within 48 working hours. If it has reached this point, I would encourage you to give them a phone call or escalate it with senior management. Though, I can hear they weren’t exactly supportive either! Does your son have a teaching assistant/SENCO who could help negotiate this?

I am sorry if all this sounds like a jumble, but I want to reassure you that we care about you and your son, we hear you, and we are listening. We will do anything we can to help! You might also find these resources helpful:

-          IPSEA (https://www.ipsea.org.uk/Pages/Category/get-support)

-          National Autistic Society (https://www.autism.org.uk/advice-and-guidance/topics/transitions/england/starting-college-or-university) (https://www.autism.org.uk/what-we-do/help-and-support/transition-support-service)

-          BEAT (https://www.beateatingdisorders.org.uk/)

All of these sources have the potential to help you and/or your son! As I said, we will also be here for you. I have personally been where your son is and I won’t let you face this alone if you don’t want to! 

 

L_Volunteer

Thanks @Ross_Scope. Hopefully, I have been semi-helpful! 

auri38

Thankyou so much for your reply and all your advice! Well done to you for achieving all you have in your life ! It must of been a tough journey for you to get where you have today ! I heard from the college and they confirmed they won't allow him to give up the horror as its part of the exam boards criteria! So we have now asked for emergency annual review ! Fingers crossed it can help .
Many thanks 😊 

L_Volunteer

Hey @auri38

Thanks for your kind response. I am really sorry to hear the college won't allow him to give up the horror as it is part of the exam boards criteria.

If I was you, I would encourage the college to share the criteria with you, and highlight where it explicitly states horror. I have a feeling it might be something like 'a range of genres' rather than horror more explicitly. If so, this would give you some room in arguing what other genres your son might enjoy learning about.

Good luck with the emergency annual review. Please let us know if we can do anything at all to help 

Tori_Scope

Hi @auri38 I just wanted to check in to see how you were doing today. How have things been since you last posted here? Do you have any progress to share?