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In a way I'm grateful... But then again!

Jambert

Hi all,

My 5 year old son was diagnosed with ASD in Jan 10 and I'm just coming to terms with the diagnosis. I'm currently seeking out as much information as possible. I've yet to take the early bird plus course but at least I've now registered on the waiting list and stopped making excuses about why I couldn't go on the course. I've spent a good 12 months trying to just get on with life, I decided not to tell anyone about his ASD except both mine & my husbands parents, his class teacher and my best friend. Although an incident at school meant I had to then inform everyone formally.

My son is such a social child, he's so loving, he's doing well at school and he is so polite and kind all of which I'm grateful for.  However these fantastic attributes mean that he is not statemented, and allowances for his shortcomings aren't made like they are for the two other children in his class. 

When he was diagnosed the Paediatrician said that his 'traits' would become less and he may even 'grow out of' them.  I hate to admit I believed her.  However his traits are getting worse, and having now done some research I can see more little things that he does or did in the past which helps me accept he won't ever 'grow out of his autism'.  I'm ashamed to admit that makes me very sad.

My son has very big meltdowns that can last hours and hours BUT I'm proud to say for the fist time ever he had a meltdown at the supermarket yesterday and I didn't get stressed out about it. For once I wasn't embarressed or upset I dealt with it and we then went on to have a nice shopping trip.  Ok I know I should be used to it by now but I finally realise he can't help it... he's not doing it to be naughty he just doesn't know any other way to communicate.  This was such a revelation for me!!!

I'm so grateful for all the lovely things my son does and says I'm so grateful his ASD isn't worse but sometimes I wish I could get the help and support he needs so much more easily. I feel like I'm fighting constantly for any help or assesments because he 'isn't that bad' (as everyone keeps telling me).  I'm sorry if that sound awfully selfish or offends anyone that is not my intention.

Living with and caring for a child with an ASD is a challenge I finally feel ready to tackle. I'm even considering getting my 3 year old assessed as he shows many traits too. Although how much of that is copying his Brother I do not know. Only time will tell I guess.

I'm not really sure what the point of this post was, but I kinda feel better for it!

Thanks for reading.

Emma.

 

Parents

  • Reading your post reminded me of how I felt when our son was diagnosed last year.  We knew what he had but when a label was finally put on him it was still a shock.  I felt like I was grieving, not for me, but for him.  Whenever we went to an appointment I was waiting for them to say no nothing wrong but they didn't.  Within a very short time of meeting him they knew what was wrong.

    Like yours our son is social (well sometimes) and seems to function fairly well.  He tends to hold himself together in school and have a complete meltdown when he gets home.  He tells me he hates going to school but when asked by the school or doctors he says he likes it.  I think he is scared of being moved as he is used to it there.

    At school parents evenings the best they can say is that he is not the worst in the class.  That is little comfort to me as I am sure with the right help he could be one of the best in the class.  Just today we have found out that a list of recommendations from his OT have been ignored by the school.  He can't have on of the things because there are only 2 in the school and they cost £30.  If they had told me they could not afford it I would have bought one myself!

    I am so frustrated at the moment but I need to get my head straight and find out what to do if they will not give him what he needs.

Reply

  • Reading your post reminded me of how I felt when our son was diagnosed last year.  We knew what he had but when a label was finally put on him it was still a shock.  I felt like I was grieving, not for me, but for him.  Whenever we went to an appointment I was waiting for them to say no nothing wrong but they didn't.  Within a very short time of meeting him they knew what was wrong.

    Like yours our son is social (well sometimes) and seems to function fairly well.  He tends to hold himself together in school and have a complete meltdown when he gets home.  He tells me he hates going to school but when asked by the school or doctors he says he likes it.  I think he is scared of being moved as he is used to it there.

    At school parents evenings the best they can say is that he is not the worst in the class.  That is little comfort to me as I am sure with the right help he could be one of the best in the class.  Just today we have found out that a list of recommendations from his OT have been ignored by the school.  He can't have on of the things because there are only 2 in the school and they cost £30.  If they had told me they could not afford it I would have bought one myself!

    I am so frustrated at the moment but I need to get my head straight and find out what to do if they will not give him what he needs.

Children
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