Hi, I'm new to here and thought it would be a good place to ask for ideas and opinions.
My son is about to finish year 6 and has Aspergers, OCD and mild dyslexia. He is at least 2 years behind in his learning as he has been so anxious about everything. He doesn't go any further than our local park, won't travel in any form of transport that pollutes and refuses medication as he thinks it will 'hypnotise' him. Life is very limited for him at the moment.
It's looking unlikely that he will be able to attend a secondary school setting at the moment so the Local Authority have been good in being proactive and are trying to get him into another less mainstream provision which will use an alternative timetable. How we are going to get him to it is going to be a big hurdle, he's refusing to think of any changes at the moment.
The amount of stress on our family has been huge and has impacted every one of us. I work and love my job - it is the time when I'm able to 'be me' and can think of something else rather than family issues. I have worked my way up to where I am, studied hard and have been lucky to get my role. Problem is, it looks like I'm going to have to give it all up because of my son's needs and I'm really upset. I work in a pastoral role in a school and these are hard jobs to come by.
We have all the services that should be involved but things just haven't improved and he is now even more anxious about the changes ahead.
Anyone else been in a similar situation please? Anyone had to give up a job they loved and are now a stay at home mum?
Thanks for reading.
I'm sorry I can't help, but I just wanted to say welcome to the forum and I am sure someone will be along soon that has been where you are now.
Hi there, I am sorry to hear about the predicament you are in. Thanks for taking the time to share your thoughts and reaching out to us. It is never easy and it takes a lot of courage. I was going to mention perhaps the school setting but you have already covered that topic. Transition or changes are going to be challenging but with the right amount of care, help, patience, support amongst other components you and your son and family will hopefully have a better quality of life.
Have the school perhaps mentioned SEN or EHCP to you or what else they can offer? For e.g. type in Local Offer on Google followed by the borough and county they have a range of services depending on the area. As for your work situation, surely they can liaise with you taking into consideration your situation. Isn't there a law or legislation regarding those with Autism and Asperger Syndrome. Making reasonable adjustments?
Could you see a work advisor or work employment officer? Or speak to someone of higher authority within the job to see what can be done. I have not experienced the exact predicament you are in. I am sorry I couldn't provide much more help. Hope things are more easier.
I read your post and I can empathise with your situation. My daughter is in a dsp in mainstream school at the moment. I really fought for the school as I have seen how inclusive it is. All the children regardless of needs go abroad with peers if they like. The school take them out on overnight stays to hotels if they are anxious etc before. My teenager is very sociable in her own way and has never been made to feel her asd is a holding her back. Her primary friends accepted her quirks and ran fast when she started to have a meltdown. She was never judged or pushed out and she was very happy. I thought high school would be were she would flourish and grow. As her violence wouldn’t be known about in the new school so she had a clean slate as not one of her old friends goes to her school. But the need to have support assistants with you constantly is making her feel so alone and hate school. Teenage girls don’t want to hang around with the quirky kid with the t.a with them. She cries when she gets home because she wants to gossip in the corridors between lessons and at break times. But she has gone from a bubbly, happy girl who really seemed to feel empowered that she has autism. That she isn’t one of the same mould and worked hard on trying to understand the world around her. Never once had I heard a negative comment about it. Fast forward a year and I have a child who is suicidal and says if she is just an autistic then what’s point in life as she wil always be alone. Nobody likes autistics because adults are always with them. She has started coping very extreme tics stating it’s what autistics do. She rarely even uses her name whereas she always spoke in terms of her name instead of I!
fortunately the paediatrician is amazing and worth her weight in gold. Within 15mins of putting the phone down the mental health team called and booked her in the following day. I called her in tears as I don’t have a clue how to make it better. It’s breaking my heart that she doesn’t see how wonderful and awe inspiring she is. That she taught me to be a better person and see life in a richer more colourful way.
But going back to the post I have had to had in my resignation before I was sacked. I have studied for 12 years for the job and able to feel good kids could have more treats etc as i have been on a proper wage not studentships whilst doing PhD. Since January I’ve had to leave work 48 times to collect her because she hates it so much. That’s 48 day’s of clinics and appointments rearranged etc. So I’m feeling sad that I’ve done all that work, missed out on kids to work and study and provide a better life and now I’m worse of than before. I’m gutted that I couldn’t carry on for them and my sanity. So now I’m unemployed, told because I’ve resigned no money is due. I’m just feeling like an absolute failure as a parent! I feel guilty because she is having to go through this, I hate thinking of her so alone and upset in school. She said on one day that she didn’t speak to a friend all week it was only the teaching assistant and teacher she spoke with.
I feel so helpless that this time I can’t help her fix it quickly as I’ve managed over last 13years.
oh and the travel to school is provided by our council and education department. As it’s the only school suitable and 15miles away. She has an escort and is collected and dropped off. At least I can see the positive effects of all the extra funding she gets. As I don’t see how it’s been proactively used in school. Yes she has 1:1 support but that doesn’t equate to £22k+ that is attached to her. I’m paying out of my own pocket for support at home, social classes, taxis to and from as she can’t manage on public transport and I’ve always had the spare cash to enable using £120 in taxis to allow her socialise. But now I have no job I don’t know what will happen.
Sorry for the rant
Thanks for your post. Myself and my wife are in similar situation. Our daughter has been diagnosed with ASD asperger. She is 12 years old and cannot cope in school, therefore she is at home at the present. It has been 18 months now. Cannot find much help around. We live in the area of Bromley, south London. She refuses to see any body else a part from myself and her mother. Very depressing and stressful.
Thank you x
Hi, thanks for your reply. Yes my son has an EHCP, he's band 5B so just below the top band of not being able to be in mainstream. School have been great but have struggled with his needs. CAMHS have tried to be supportive but haven't really known what to do as he doesn't engage with them well. Re work, I have been talking to my manager about things and have been open about it, but there will come to a point when I won't physically be able to put in the hours needed. I guess I'm also emotionally invested in this job as I work with vulnerable children. Just don't want to let either my son or them down. I know I shouldn't do, but I do compare my life to those of friend's around me and see that they are gaining more freedom with having children go to secondary school and becoming more independent. Our life is just 'on hold' as we can't go on holiday, go on days out together, eat out or go any further than the local park with him. I fear my son won't want to go to any other provision or secondary and ends up at home. The education system just doesn't cater well for complex SEN children in my area.
We'll get through it because we have to, got to try and stay positive!
You would, in my opinion, be coveredby rhe Equality Act as someone caring for someone with a disability.
This does not mean that you can dictate what you do in the workplace, but that the employer will have to consider 'reasoonable adjustments' in order for you to keep your job at the same time as looking after your son.This can be far reaching and include such possibilities as part time working, adjustment of hours, time off at short notice to attend to your son, in addition to normal emergency leave, working from home,etc, amongst other possibilities.
First job would be to write to your employer explaining your situation and requesting reasonable adjustments and what you propose. Enlist the help of a union rep if you are in a union, or seek advice from a citizens advice bureau.
Remember also your employer may argue that the adjustments you are asking for are not reasonable.There should be a policy in place or if not you can check with the Acas website on reasonable adjustments, Acas also have a helpline. The usual arguement for an employer to make is that the employer has a business to run and the adjustments are not practical, so try to think how you will counter that claim.
Thank you for replying to my post. I'm so sorry to hear about your situation - sounds like your Local Authority doesn't cater well for complex SEN either.
Puberty will also be playing a part in your daughter's emotions and it can be hard enough without also trying to cope with her autism.
You aren't a failure as a parent - you have done and are doing all that you can to help support her. Unfortunately that has come at a price for you in terms of money and your emotions, quite understand.
Can school not do anything further to support her wellbeing? Like provide a counsellor or offer more bespoke ELSA support sessions? MIND.org.uk is also a good organisation who offer mentors to teenagers having difficulties - but I'm guessing you may already have looked into support like this.
I guess the way I look at it is that the needs presented in autistic individuals can be ever changing, and with the right help and guidance they can begin to manage and get through things. It doesn't mean that there won't be hard times in their lives and to them (and people around them) this can be very distressing. I hope things improve for you soon, keep going, it sounds like you are doing an amazing job.
Thanks for your reply. It's so hard when there is very little support and things have been going on for a long time. It's amazing how Local Authorities differ so much, with some offering a lot of resources and some very few. I hope your situation changes in the future and things improve for you all.
Sorry to hear you are having a difficult and stressful time at the moment. In addition to the community's advice, I just wanted to let you know about a couple of services which could be useful:
Our Parent to Parent Service offer emotional support to parents and carers of children or adults with autism. You may like to contact them? This service is confidential and run by trained parent volunteers who are all parents themselves of a child or adult with autism. You contact the team on 0808 800 4106. Please leave a message and the team will call you back as soon as possible at a time that suits you, including evenings and weekends. Alternatively you can use contact the team via web form: http://www.autism.org.uk/services/community/family-support/parent-to-parent/enquiry.aspx
The Autism Helpline team could also provide you with information and advice. You may like to contact the team via telephone on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor. Alternatively, should you prefer to send a message, you can do so via their webform: https://www.autism.org.uk/services/helplines/main/questions.aspx
Hope this helps,