feeling sensitive

[venus]

Stood at the school gates today with a woman who has a son with severe autism,my son has HFA.We were talking about holidays and I said I don't expect that I will ever go abroad as Owen does not like going out.She said well when he gets older you can leave him.I said well that may not be possible,it all depends on how well he gets on and whether he can support himself.She said 'well you have got a hell of a better chance of going away than we have ' and then that she wished her son was like mine.She then said 'well your son is not that bad'.I really hated the way she said everything.It felt like because my son has HFA that is not as bad as her son with autism.I think we all struggle in our different ways and I am having such a bad time with my son at the moment.He says he wants to kill us and will attack me for sometimes up to an hour.He hits his brother for no reason.He won't go out so alot of the time we sit in this house incrediably bored,sometimes it takes two hours to get him out of the house, I could go on and on.This ladys son sleeps well, goes out well and she has said he is no trouble with him, he goes into respite care every month, they go on holiday twice a year ,don't get me wrong I would not like my son to have severe autism but she made me feel like I was having it easy because my son only has HFA . Perhaps I am just feeling sensitive at the moment and tired, my son gets me up having nightmares at the moment again.Thanks for listening and hope I haven't offended anyone.

[Cariad]

I think they both have their challenges, it's unfair that you can only have respite and some services if they have a low IQ, the thing is you still are exhausted and worn out if they are severe or HFA!!

 

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[Frangipani]

My son had lots of behavioural problems, but this really improved when I learned how to deal with them and understand what his triggers were.

 

There are some really good books in resources to help with this. Also, I am sure many can give some suggestions, if you feel you need some. Just ask more questions, because I may be suggesting stuff you already know.

 

Things like sensory overload, sensory rooms. Diet too.

 

Do you have a good understanding of these?

 

Fran

[NikkiSmith]

I have to admit that I was very much like that lady until just over a year ago; I had my middle son who was far worse than any of the other children with autism I had met and I felt that their parents had it so easy and how my life was harder... (don't shoot me for it, please!)

 

Since my youngest was diagnosed and is high functioning and then my eldest, also high funtioning I have had my eyes opened, big time! The two of them have so many different struggles in daily life and none of the professionals seem to recognise their issues (especially not Social Services!) and my middle son is very happy in his own little bubble and as long as his routine is unchanged and nobody interferes in his life (or expects him to sleep!) he is very content.

 

DS2 goes to a special school, gets weekly overnight respite, access to a fortnightly Mencap club and all sorts.......... DS1 & DS3 aren't acknowledged by Social Services, no respite even though DS3's sleep is a limited as DS2's and I have to fight to get them help in school/pre-school.

 

My opinion has changed - I think they all forms of autism are as challenging as each other, just in varying ways.

 

I don't ever tell people they have it easy; that's not for me to judge.

 

Nikki.

[Bard]

We're just back to the old saying 'Walk a mile in my shoes'

 

Every one is human and prone to grumpiness and rather snappy remarks when they are tired and overwhelmed and feeling guilty that they are not managing as well as they think they should. (are you listnin' BD? ~This is me 'fessin up! )

Each of us is different and finds different sorts of pressure unbearable, some of us can cope on little sleep and cat naps, some need 8 hours to function. Some mourn the perceived loss of the future they dreamed for their child, and some just wonder where the new path will go.

 

One of the difficulties that B has is that AS is all he has, no other learning issues. So when he kicks off or doesn't manage a 'simple' task, he is often met with exasperation or irritation. He also looks older than he is.

My friend's son is Downs; happy, smiley and will be about 3 all his life. Her challenges are very different to mine, but her son is happy in his world most of the time and people accept his disability.

 

But sometimes it's hard for a carer who is at a bad time in their lives to look at someone else and be generous, and accept that it is as hard in a different way for that person and his/her child.

So all you can do is step back and give them room to breathe and get their balance back, and accept that the comment wasn't truly aimed at you but was a product of the other person's distress.

Edited June 29, 2008 by Bard

[bid]

Stood at the school gates today with a woman who has a son with severe autism,my son has HFA.We were talking about holidays and I said I don't expect that I will ever go abroad as Owen does not like going out.She said well when he gets older you can leave him.I said well that may not be possible,it all depends on how well he gets on and whether he can support himself.She said 'well you have got a hell of a better chance of going away than we have ' and then that she wished her son was like mine.She then said 'well your son is not that bad'.I really hated the way she said everything.It felt like because my son has HFA that is not as bad as her son with autism.I think we all struggle in our different ways and I am having such a bad time with my son at the moment.He says he wants to kill us and will attack me for sometimes up to an hour.He hits his brother for no reason.He won't go out so alot of the time we sit in this house incrediably bored,sometimes it takes two hours to get him out of the house, I could go on and on.This ladys son sleeps well, goes out well and she has said he is no trouble with him, he goes into respite care every month, they go on holiday twice a year ,don't get me wrong I would not like my son to have severe autism but she made me feel like I was having it easy because my son only has HFA . Perhaps I am just feeling sensitive at the moment and tired, my son gets me up having nightmares at the moment again.Thanks for listening and hope I haven't offended anyone.

 

I think maybe the thing here is that she knows her son will never leave home other than probably to live in some form of sheltered placement.

 

And once they are dead, he will have no one to act as his advocate...he will be voicless

 

She knows that most people with ASA/HFA will be able to live independently, albeit with difficulties.

 

So while I'm not trivialising the difficulties we face with our kids, I can understand why she feels as she does.

 

Bid

Edited June 29, 2008 by bid

[Suze]

Hi Venus, big hugs , its hard when others who you think would understand your problems don,t aknowledge them , and make you feel like your the lucky one.Perhaps you could talk to her again and explain how you feel ,get it off your chest as it were, if shes un responsive and still thinks you,ve nothing to complain about I think you have to resign yourself to the fact that shes a mum with a son with autism who also happens to be a grumpy person ,, best wishes suzex.

[smiley]

So all you can do is step back and give them room to breathe and get their balance back, and accept that the comment wasn't truly aimed at you but was a product of the other person's distress.

 

What Bard said.

[Imelda]

Excuse my ignorence, but what is HFA?

I know a woman who always saysd "My child isn't as bad as yours" She really upsets a lot of people. Her son has aspys, he is a lovely lad but when he goes to mainstream high school, he will stick out like a sore thumb. He is at a small village school at the moment ans is well loved and looked after by the other kids. It won't be the same at high school, we all know kids can be cruel.

Does anyone ever think that some kids biggest problems are the parents?

 

We all have our struggles, nobody knows the full story. If you saw my son out with me or his dad, you wouldn't notice anything unusual at all. Its a different matter if you came to my house!

[pearl]

I used to go to an ASD support group, & in the early days was the only one with an Aspie child. I sometimes felt there was almost no point of contact as the problems associated with severe autism were so different. However no-one ever said anything negative to me & I always felt welcome there.

 

I was special needs governor at JP's school, & one of the mums asked me to talk to the teacher about her son, because she thought he was dyslexic. I duly did, & was told that nothing was bad enough to warrant formal intervention at the mo, & he was getting extra help in class. I reported this back to mum, who went off on one, & said, its all very well for you, look at all the help YOUR child is getting!

 

scuse me? I fought long and bliddy hard for that help, & she cant even speak to the teacher without hiding behind my skirts? I'm afraid I more or less said that to her, but years down the line realise that its as Bard says, it really wasnt personal, she was just worried & a whole lot less assertive than me (but MUCH ruder )

 

As bid said, the future can look bleak when a child is severely autistic, but on the other hand, I used to think, well at least you know for certain that your child won't be expected to function in the world. Our Aspie children are expected to, & the disability is so hidden that few allowances are made for them, & I think that can be just as scary.

[venus]

Thank you all for responding , I think I just felt hurt because I expected her to understand.I have different problems with my child to the ones that she has with hers ,doesn't mean that one is worse than the other ,just that they are different.I shall be more understanding another time,we all need to vent sometimes .