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Caring for 3 with ASD -Carers UK Forum

Caring for 3 with ASD

For issues specific to autism / Asperger Syndrome.
Hi there , I'm new on here but not new to caring. All 3 of my children have Autism Two are still in school and the other is now working having been in special education all his life . I'd like to say that over the years some people's attitudes to caring for family members has changed but sadly I still experience the stigma of people who think I should also be employed in a normal job too. This makes me feel like I'm somehow failing at life and that I should still be able to look after my 3, 24/7 and still go out to work I'm exhausted permanently and doing this on my own and everyone needs a piece of me and tbh there's nothing left for me!. :|
Do not ever let anyone judge you. I did the opposite and carried on working. I could not manage at all and then my disabled son went to live with his father where it is becoming apparent that he is just being locked in his bedroom every night. He has an ASD diagnosis, but also a rare syndrome that causes sleep apnea. I have had to take time off work just to chase services and beg and plead for my son to get some treatment. So life isnt necessarily rosier when you are working!! I think it helped briefly as I felt getting away from the house was keeping me sane. But it did not help with coordinating the dysfunctional world of special needs!! I have just joined here too myself. After months of screaming at services for help!
I was fit as a flea before my second son was brain damaged at birth. By the time he was 16 I was so ll my GP told Social Services he MUST become a boarder at school. I cried buckets, but there was no energy left. I feel most of the time I live a parallel life, looking on but not part of normal life.I battle constantly to ensure he has the best life possible, but am envious of those with normal children. I am look down on by social workers who completely ignore my academic qualifications and expertise. The only people who understand are those with a special needs child themselves.
The worry and stress can make you ill. I feel it so much. Especially in lockdown where I am left begging for help with him.

It is horrible. But no matter your qualfications and work status all SEN parents are rockstars! And there is a special place in heaven for you.

Lucy
Anyone that makes any indication ...

I should also be employed in a normal job too

Caring is a normal job and one of the most difficult. Most people would not want too swap places with you. Anyone who suggests working and caring. Have no idea what caring involves.

The comment I used to hear mostly ...

I couldn't do caring like you I would rather go to work.

The most annoying comment must be ....

Oh you are a family carer and what other work do you do.
I am a carer and they tell me that I should be grateful that I am able to carry on working. But now I cant they abuse me for not going out to work and to stop raising my concerns. It is a very broken system either way. You go to work and then you c ant be available when they want to check on your child and then when you ask your employer to give you time they threaten to fire you. Then when you tell SS you cant be available for the appointment they accuse you of not caring Whether you work or not the system is BS! I am living in hell of fear from these people
Hampshire SSD seem to be using the virus as an excuse to do nothing at all. My son had a new social worker in the spring, she still hasn't met him, or me. The virus is used as an excuse, blanket ban on visits apparently without even asking if they can safely social distance. In fact they could easily visit safely at all times, whatever the weather.
Hello, I read your post, and totally agree with other posters that you have already have a job, that is also your life. An incredibly tough, demanding and exhausting one that never, ever stops, and is not rewarded by recognition or perks.

Other people who make ill-considered comments about working, or may you feel that you could be doing another job as well, are blind to what your situation involves and the sheer relentlessness of it. Don’t waste any time over people who have these opinions.

My situation is different as I care for my spouse, but I have felt this too to an extent in the past, that I should be doing more, contributing more to society. However, I have come to see the value of what I do, and try and seek the company and counsel of those who can see that too. I truly wish you the best with your situation.
bowlingbun wrote:
Fri Oct 16, 2020 4:40 am
Hampshire SSD seem to be using the virus as an excuse to do nothing at all. My son had a new social worker in the spring, she still hasn't met him, or me. The virus is used as an excuse, blanket ban on visits apparently without even asking if they can safely social distance. In fact they could easily visit safely at all times, whatever the weather.
That is a complete cop-out from Social Services, bowlingbun. Not ok now, and totally unacceptable longer term. I have noticed a similar attitude at our doctors surgery. A lack of an attempt to keep clinics going. It is very bad news, many people are being seriously let down and put in a unnecessarily precarious and vulnerable position. The fall out will undoubtedly be tragic for some people, even if it is not played out in the public eye.
I agree that lockdown is making it harder and services are being shut down when they dont need to be. Yes there will be a lot of sad consequences for the most vulnerable in our society and it will all come out. Disabled children were the first to be thrown under the bus in this horrific situation.

what I find so upsetting is just how selfish SS and NHS can actually be. They are the first ready to down tools and run and look after their loved ones and not help the people they were employed to protect. It is shocking how unbelievably selfish our society actually is.