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I just need to share

Ettie

Pluh! What a stressful month. Our son was diagnosed over the summer aged 5. Although it was no surprise it is only now that I coming to realise the enormity of 'forever'. We had a hellish half term - he defied me at every opportunity, used quotes from movies at inappropriate times calling people 'hey fishface' after watching Scooby Doo, fought with his brother and lashed out at all around him. Back at school I hoped the routing would help him and then realised I had forgotten his ballet kit needed for his lesson that day. Of course we had massive melt down about it and I had to take him home - feel so guilty, it was probably an avoidable incident if only I had remembered the kit. His emotional highs and lows are exhausting, he ranges from anger to frustration to inconsolable upset to happiness, joviality and joking around i nthe space of five minutes. I am running out of parenting ideas and feel ever so lonely. My husband is lovely but just doesn't really get it and I just really needed to share this with people that might understand what I am feeling - am I totally alone, is it this hard with a child with ASD, what can I do to make it easier for him and his brother who, bless him, is struggling to adapt too. AAAAAARGH, I am so exhausted and upset by this all and I just dread that it is just going to get harder as he is already standing out more and more amongst his peers. Need some reassurance or help, please!

  • Thank you all - it is really hard going. I miraculously thought the routine of school would bring about a sense of calm. SO daft! He walloped someone on the head because he misheard them say 'give me a high 5' he thought they said 'give me a head 5'. Oh for the world to be so literal, it's annoying as he has a good sense of right and wrong but it seems to disappear so easily and he cannot understand it.  Do any of you belong to a support group where you meet up in person? Is it worth it? I find the thought quite terrifying but the help this forum gives me is monumental. Love my sons to pieces, just want them to find life a bit easier. Hugs tonight!

  • You can also get PEC cards off ebay for reasonably cheap... they are really handy to put in a specific order and the child can have them attached to their jeans or whatever and just look through it as they want to reasurre themselves about the day ahead :) x

  • Hi there - the calendar idea is brilliant - also building up a schedule works well.  Do-to-learn has lots of brilliant simple pictures that you can cut out and laminate, then velcro on.... it is a fiddle but it really works.  There are weekly templates on there as well.  It's about £28 for a year's membership but worth it.  If he takes to it and you always make it accessible, he'll probably end up telling you what he needs each day!

    Don't beat yourself up for not remembering everything - I sometimes completely forget to make my son's pack lunch and have to drop it back in half an hour later!  He may well become a bit more flexible as he gets older.

    Best of luck x

  • You are very kind, thank you. Idea about the calendar is a good one - might invest in a wallchart and make a visual timetable for him to help him understand what is coming up. We moved from the state sector to private education as the state school was not meeting his needs and he was one of 64 in his year, he is much happier where he is and his teachers are very supportive. Will try the book about Aspergers - have tried other books but at moment he cannot see beyond the view that it is not fair his brother can behave like this and he can't! Aaaargh! This forum is very helpful in that I don't feel alone so much. Thank you all.

  • hi Ettie - picking up words from others and/or from tv can be a nightmare.  I always try to remain outwardly calm + give a short explanation as to why using a certain word is inappropriate.  Have found in the past that a big reaction doesn't help.  I'm not saying it always works though.  It must be very difficult for your son to have such a roller coaster of emotions.  Sounds like you need more support than you're getting.  You have 3 people you're trying to keep happy and who you're also worrying about.  It's a big load for a person, however strong they may be.  I think autism can be difficult for some people to understand.  It can be difficult to explain to others.  It's such a relief when you talk to people who do "get it".  "Forever" makes it sound like things remain static, altho I don't think you mean it that way.  Your son is only 5, he will develop, especially in the right educational setting to meet his needs.  Does he understand when school holidays are and when he goes back?  My son became very interested in calendars for quite a while and this helped him because he knew in advance what he was doing each day.   Also he liked the holidays and also liked school so there weren't issues there.  Does your local council offer quality respite care at all? Sometimes a short break can help if it's regular.  Please don't feel guilty, altho we all do at times I think.  You're a good mum.

  • ((Big hug)) Ds has heard the term "Ugly pig" From a friend at school and is using it at every opportunity at the moment.......... Its crap isn't it? :(

    With regards to the other siblin i have a 9yo daughter who really benefitted from the "let me tell you about aspergers book" Which answered lots of questions.

  • Hi, I can't say I completely understand but I had a hellish half term with my daughter too. She defied me & started behaving badly because her routine was broken. She also repeats tv episode clips but not normally with any meaning. I am finding it hard to come to terms with at the moment that Ella will never quite be the same child that I have had for the past  3 years as she will have this label. 

    I wish I could offer some advice, I suppose all I can say is your doing the best you can & yes it could have been avoided but your only human & it's just one of those thing's we all forget stuff. I hope that your son settles back down again soon. Take care x