Complex autistic son, unlikely to go to secondary school, looks like I will lose my job.

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. 

Parents
  • 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

Reply
  • 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

Children
  • 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.