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mum to asd 14 yr old and i'm losing the will to go on. - Carers UK Forum

mum to asd 14 yr old and i'm losing the will to go on.

For issues specific to autism / Asperger Syndrome.

Its taken me a lot of courage to post here as I am a support worker for parents in crisis, therefore should be able to sort my own issues out, but Im at the end of my tether. All the time I am just about coping there is no support. My son was functioning well until this year when he became a school refuser due to anxiety and bullying. School have been very little support as he is seen as a behaviour issue that needs to be squashed rather than a special need that needs support and understanding. When his anxiety levels get too high he is unable to trust anyone at school and then walks home. I know he will go home and he calls me and lets me know whats happening. He is then however, punished at school for leaving the premises which makes him even less likely to want to go in!! Vicious circle number 1.

I work full time term time, but over the last 9 months have had to take time off here and there to attend school, camhs and gp appointments with my son, as well as having to stay home on those days that I was worried for his safety. He then unfortunately broke his elbow which resulted in a massive operation and hospital stay and then further complications due to infection. I had to be in hospital with him...there was no other choice. I don't have familly around me and even if they were, my son would only want me there as I am his go to person.

I am now being disciplined for capability to do my job due to the amount of absence there has been. They have agreed not to take it any further if I can show a radically decreased level of absence in the next 7 weeks, and they have allowed me some flexibility to take time off for appointments and make up that time at a later date. i am unsure however how my son is going to react to being back in school full time so am unable to assure my employers that I will be able to fulfil their expectations.

My son is going into year 10 next year and although academically capable, he is emotionally and mentally unable to cope with the GCSE program and curriculum. I have investigated alternative provision through a local college which provides 14 to 16 education and also has a specialist autism unit attached. This seems ideal for my son, but I do need the support of his school to access this. If the school don't support me, then my only option is to take him off roll and homeschool him until he can start college in year 10 if they will offer him a place without a school roll. If I take him off roll and he can't get into college he then doesn't have a school place . I have emailed the school and requested that they look at this option for him very seriously as I feel that by asking him to take 9 GCSE subjects they are setting him up to fail.

My mental health is suffering and Im back on antidepressants which are just keeping a lid on it. My personal life is shaky and Im at risk of throwing it all in, packing a bag for us both and taking a plane ticket out of here to sit on a beach somewhere for a few months.

I don't know what Im asking for from this forum, maybe just to be heard by people who understand. Has anyone got any ideas of how I can get through this mess of bureaucracy and get some real help for me and my gorgeous but misunderstood boy.
Hi Samantha, welcome to the forum. Have you ever heard of IPSEA? They are the experts on special education provision, Google will tell you more, they were a huge help when I had a battle with my own local authority. Do contact them and they will give you support to get what your son needs.
Your employers should be aware that you are classed as "disabled by association" and their actions might be seen as contrary to the Equality Act. Ring ACAS and/or the Carers UK helpline for further information.
Samantha - there is a big difference with dealing with such issues as a family support worker, where you can clock off at the end of the day, and dealing with them in your own family. No wonder you want to head to a beach. As Bowlingbun said, you are disabled by association and your employers are obliged to make necessary adjustments to allow for that. As BB also said, IPSEA are a good source of information and advice. Unfortunately it seems that families with special needs of any kind have to really fight for the right help and support, the last thing we need on top of everything we have to cope with. I really hope that they can help you find a workable solution for your son's educational needs. I can't really offer any practical advice, but this forum is always here for you to offload on, to vent, to moan etc. We all need a pressure release valve, and it really helps to have people who have an understanding of how tough it is.

All the very best.

Hi Samantha
My first thought is perhaps for a change of school, not necessarily the specialist one you have in mind as those are so very very difficult to get into. You may find that another mainstream school has a better handle on special needs and bullying and that him starting afresh with a clean slate works wonders. It would also show him he has a timed escape plan and he could help you by attending the current one for only 7 more weeks. A new school may well accept him now. If not, his current school should at least help by providing a refuge place to go too when the stress builds rather than him leaving the premises.
(Also it sound like his current school only warrants a 'could do better' on their report)

Also, having read a lot recently on here from mum/carers who have their child at home 24/7 please please put this a last resort option for your own well-being. If you feel unsupported and suffering mental il-health now, it will feel a million times worse if you are socially isolated too.

Should also have said welcome and well done for being brave. There are many here who will understand and have trodden similar paths. If you haven't already , read the other threads under the Aspergers thread.
There are many battling parents fighting for their special children.
Hi All and thanks for your replies.

We have tried a change of school previously but because of his ASD he was unable to go to it and wanted to go back to his old school, who accepted him back.

I am also getting crappy letters from the EWO who seems to think that just because they have put a reintegration timetable in place for chris its going to work and if it doesn't its my fault. She is also questioning my parenting and morning routine as she feels that I am to blame for him being unable to get up and out in the morning.

I really have had enough.

School are refusing to back the alternative education at college but the college have said that I can go ahead with an application anyway without the school's backing so this is what I will do.

Meanwhile he is continuing to walk out of school when he can't cope or refusing to go in when its just too much. At least he is still trying sometimes.

On another note, my older son has decided to acquire an air rifle and doesn't really seem to understand that its not a good idea to have a weapon in the house with my son in his delicate state!!

When will it end?