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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

  • I understand exactly what you mean Emma. But i have told people so do at least get to talk to others about it, but mostly they say things like 'there is nothing worng with him' which just upsets me more. 

    I just ordered a book from Amazon yesterday called Parent's guide to Asperger syndrome and High-functioning Autism: How to meet the Challenges and help your child thrive. i don't know if it is any good yet as i have just ordered, but was really pleased to find something with high functioning in the title. 

    I have spent many a day crying my eyes out, including my last birthday when i got a report from his nursery, which really distressed me as the picture it painted of my son was not the reality that i know. I also keep thinking someone will say no he was a bit slow to start but will be ok. I know in my heart this is not going to happen but can't help hoping. I am really grateful for all the help we have been offered and actually really impressed with all the services. 

    Yes let's def keep in touch and see how are boys are progressing. 

    I met another Mum at my son's school a couple of weeks ago and her son was diagnosed at the same time as my son was a maybe, it was really good to meet up with her and chat. Might be worth asking at the school if there are any other HFA children whose parents would like to talk to others. 

    Knowing other people have the same things going on makes you feel so much better doesn't it. 

    Dear Ming, thanks for your post too. I hope your son gets what he needs, it must be hard feeling that you always have to fight. What you said about grieving for your son is exactly how i felt too, so confused about what the rest of his life would be like. 

    Dear Candybomber thanks for your post too, I will def check out those websites 

    Night x

     

     

     

     

     

Reply

  • I understand exactly what you mean Emma. But i have told people so do at least get to talk to others about it, but mostly they say things like 'there is nothing worng with him' which just upsets me more. 

    I just ordered a book from Amazon yesterday called Parent's guide to Asperger syndrome and High-functioning Autism: How to meet the Challenges and help your child thrive. i don't know if it is any good yet as i have just ordered, but was really pleased to find something with high functioning in the title. 

    I have spent many a day crying my eyes out, including my last birthday when i got a report from his nursery, which really distressed me as the picture it painted of my son was not the reality that i know. I also keep thinking someone will say no he was a bit slow to start but will be ok. I know in my heart this is not going to happen but can't help hoping. I am really grateful for all the help we have been offered and actually really impressed with all the services. 

    Yes let's def keep in touch and see how are boys are progressing. 

    I met another Mum at my son's school a couple of weeks ago and her son was diagnosed at the same time as my son was a maybe, it was really good to meet up with her and chat. Might be worth asking at the school if there are any other HFA children whose parents would like to talk to others. 

    Knowing other people have the same things going on makes you feel so much better doesn't it. 

    Dear Ming, thanks for your post too. I hope your son gets what he needs, it must be hard feeling that you always have to fight. What you said about grieving for your son is exactly how i felt too, so confused about what the rest of his life would be like. 

    Dear Candybomber thanks for your post too, I will def check out those websites 

    Night x

     

     

     

     

     

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