feeling down and alone

[jimsmrs]

Are there no Autism support groups in your local area???

[Carolin]

Yes we have an autism group which is quite local. My son does attend some meetings, but most are not appropriate for his needs. Autism is such a vast spectrum.

I also struggle with the social side of things. Carers/ parents have to stay. I do not cope in large groups, and the parents tend to be quite loud which really intimidates me. I often struggle through for my sons sake but it is incredibly difficult for me.

I just wish I was able to function better . life feels so difficult most of the time .

[pulisa]

I know what you mean about the parents. I avoided the social meet-ups for that reason. A lot of them would compete over who had the most challenging child..It was all about them really.

Sometimes those who keep quiet and struggle on are those who are most in need of help however it is those who shout the loudest who are given most attention sadly.

You need to talk to your CPN and impress upon him/her just how low you are feeling. They are soon all going to down tools and disappear for 2-3 weeks at probably the most challenging time of the year. I just feel you need to act soon before you are left to cope alone-the CPN needs to be aware of just how hopeless things seem to you

[Carolin]

I've just seen my CPN. I told her how I feel overwhelmed with everything, and how Christmas feels so daunting. She said I was stronger than I think,and I will cope.

I wish I had her confidence. It's easy for her to say I will get through it. I probably will, but my fear is I will snap completely, and end up in hospital.

As my sons main carer ( and the one who makes his day manageable ) I can not afford to lose control. I think this is what scares me the most. I don't have the option of being taken care of, as the consequences for my son would be catastrophic.

It is so hard being a carer when you feel you need care as well.

[Carolin]

Thank you for your support Pulisa. Somehow it helps to know others understand.

I have always been anxious, but I think since having my son, I have got worse. Its a learning curve each day. As he reaches pubity I have to worry about how we approach things. With my daughters it was so natural. As you know, nothing is natural with autism !

I have been out very early this morning, to avoid the Christmas rush. Now I am trying to get through the day without a meltdown. My son is hyper excited for Christmas, and seems ten times louder than usual. Thank goodness my neighbour is deaf.

[pulisa]

Dealing with the mental and physical challenges of autism is not for the fainthearted as we both know. What you have to deal with in a single day I'm sure would be enough to really throw even the most laid back parent.

I also have always been anxious and of course have to work really hard to make sure my anxiety doesn't affect my daughter. I haven't been too successful as she has severe anxiety and OCD..but we understand each other and know what are our triggers.

You are your son's "expert" but this takes its toll on you and particularly on your mental health. I'm sorry your CPN was so dismissive-she obviously hasn't got a clue but most people not in our situation don't have any idea either.

School holidays are a challenge. Please keep writing on here if it helps you to cope? Can your daughter help out at all-I don't know whether she is younger or older than your son?

[Carolin]

Yes, school holidays are a challenge. Especially the winter ones as we are all cooped up together in what feels like no escape. I have been known to sit outside in the rain with my wellies on and hood up !!

My eldest daughter works full time and doesn't live at home now. She is very good with her brother though, and helps when she can. My other two girls are at university, and are not so understanding. They have always seen him as an embarrassment, which is sad, but I understand.

I think we are born with anxiety, so I don't think you should blame your daughters anxiety on yourself. Yes they can pick up on things, but I really do think it is just part of her make up. Neither of my parents were anxious, yet my childhood was full of anxiety.

My son has anxiety, but that is all part of being autistic .Not making sense of the world must be very frightening. Thankfully it is not severe, but that is partly due to strict routines etc. I have noticed some slight ocd traits recently, ( bending down to touch the floor when walking is one example ). I don't know whether to ask him to stop or pretend I haven't noticed ?

[pulisa]

I think you can have ritualistic behaviour with autism which doesn't distress and OCD-type behaviour which does distress the sufferer. My daughter has a dual diagnosis of ASD and OCD-she hates her OCD behaviours. She has always been highly anxious and very aware that she is "different"-this complicates every part of her life. She was diagnosed as being severely autistic at 2 years of age but I would say that her anxiety disorder/OCD issues cause her more problems than her ASD which just emphasises these difficulties. She is now 24. She went to an autistic special school but was never properly "understood" despite the school being supposedly excellent. They have learned from their mistakes now.

Every day brings different challenges, doesn't it?!

[Carolin]

That is so sad . A school specialising in autism should be expert at helping and educating autistic children. Even specialists let down mental health conditions. What chance do they have in society when they are let down so badly.

My son is very unaware he is different. This is despite standing out like a sore thumb where ever we go !! This is a good thing for him, but upsets me. Many times I have been told he is a " naughty child " or needs a smack. But the worst is when people realize he is different, but still stare at us. On holiday we very often become the entertainment. Why are people so insensitive ?

[pulisa]

Because they feel uncomfortable? When people used to challenge me when my daughter was playing up I used to apologise and say she was brain damaged. That shut them up! Also they would say "oh she can't be autistic because she is so beautiful"...Would it have been better if she had been unattractive? People just don't know what to say.