• Replies 4 replies
  • Subscribers 68 subscribers
  • Views 1078 views
  • Users 0 members are here
Options
Related
Hints and tips
  • To quote someone's message, first select/highlight the relevant text, and then use the Quote button that appears
  • To "mention" someone, type @ followed by the start of the forum name, and choose from the list; that person will get a notification of being mentioned

Newbie, very overwhelmed and just dipping a toe in.

Brightstar

Hi, my little boy who's almost 5 was diagnosed yesterday with autism. It didn't come as a surprise and I thought I knew what to expect having worked briefly with autistic children in the past as a student teacher, but have been bombarded with information all of a sudden and I'm a bit lost. I have no idea where to go next.

My son's medical history is very complex, he has a brain injury which we assume has led to the development of the condition. People keep asking me "where is he on the spectrum?" and I have no idea how to answer that. His pediatrician told me she believes as he develops we will most likely find his condition leans more towards Aspergers. He also has mild cerebral palsy as a result of his brain injury, amongst other medical issues due to a congenital condition.

It has been a bit of a relief to get the diagnosis as it explains so many things that just didn't seem in keeping with other children his age. He has no interest in socialising with other children, he tolerates them and is aware of who other children around him are, but other than family children he is not interested in them at all, preferring to seek out the company of adults. He loves to chat with adults but uses a lot of learned phrases and very often his speech is random, although he has a huge vocabulary he just uses language out of context.

We've had a number of issues recently with his behaviour and I know we have not been handling difficult situations well. We very often resort to shouting because sometimes it just seems like nothing is going through to him. He does everything on his own terms and sometimes it has just felt like he is being deliberately naughty. I feel so guilty about how we have dealt with his behaviour when it hasn't been his fault. We've also had a lot of problems with the toilet, he has been toilet trained day and night since the age of 3 but recently he has been soiling himself a lot and I don't know now if this is related to the autism or if it might be something else. Sometimes it's 5 or 6 times a day and he very often doesn't even seem to realise it has happened. It's very frustrating and again, something I don't know how to handle.

Sorry for my big ramble. I obviously needed to get it all out. I don't know where to start.

  • I know what you mean about the amount of information...its amazing and slightly frightening as well as there's so much of it...the spectrum thing confuses me to when someone asks me I just say "she's on there in the mild area I think"

    i gotta be honest my girl drives me absolutely mad sometimes with her behaviour and i've yelled at her in the end to try and make her see what she's doing is wrong...it does feel awful to do it and i know how you feel but it does happen when frustration and a total apparent lack of response occurs so please try not to feel guilty it's not your fault this happened.

    toilet training can come much slower to children with autism and it just develops the same as with kids that arent autistic just at a slower rate, my friends son outright refused to go the toilet when she tried to take him out of nappies until his body forced the release, and he is still in pull-ups part-time but he is coming...I had similar issues with my son he was great with the first stage of his toilet training but the second no way he would hold it in until his bowels were overflowing that took a lot of sorting out but we managed but he still regresses now and then.

    something that might help is a tight routine for him maybe try a "picture list" to help get it established so he knows what's happening when, it helped with both my son and daughter and i know it went a long way with my friend so maybe it'll help you to

    hope it helps

  • Thank you both for your replies. I've spent some time reading what I can and talking to a very knowledgeable friend who has an autistic son, I feel a bit better now and am just starting to try and organise it all in my head. Today I'm going to phone some of the numbers the paeditrician gave me to find out about parent information workshops, I think that would be a good place to start.

    As far as putting him back in pull ups, I think for him it would be counter-productive. I know it would certainly be the easier option for cleaning up, but he's been in pants for so long (almost 2 years now) that I think it would just confuse him as to what is acceptable, and I don't want him thinking now that it's ok to wet and soil himself when we've been teaching him the opposite for all this time. He does know that he shouldn't do it, I think the issue now is teaching him to always know when it is going to happen, and ask for help. He can go for weeks and weeks without a single accident, and then there'll be a spell where it's a regular occurence for a few days. I guess I'm just hoping that by some miracle he won't be having accidents come August. Optimistic I know, but it's only very rarely happened in nursery in the 2 years he's been going, so maybe it's not too optimistic to hope that he'll manage through school too, I don't know.

    We do have good support for his other conditions. He still attends his surgical consultant every year for a medical, and the community paediatrician who diagnosed the autism has been working with him since he was about a year old for his other issues, the child development centre as a whole is very good and there are OTs and SALTs etc there who we can speak to if we need to. So I guess from that point of view we are lucky, because the support is there. It's really just trying to sort it all out now into a manageable order. Once we know how to distinguish what his own behaviours are and why he does things, hopefully we can learn to deal with them one at a time.

  • Hi Brightstar, 

    I'm not sure how much help I can give you because I'm only 16 and (as you would probably hope for a teenager) I have no children! But after reading your post, I just wanted to say that I'm really glad your little boy has a diagnosis - my mum had her suspicions about me since I was 18 months old yet when she asked professionals, they (quite literally) laughed in her face. I didn't receive my diagnosis of Asperger's until a matter of days before my 16th birthday, which was just under four months ago.

    Now he is diagnosed, there are many places your family can look for practical and emotional support rather than just the medical input consisting of the giving of the diagnosis and the brief explanation of the diagnosis. This is good as sometimes the doctors, psychologists etc. themselves aren't too helpful. Like you said, they bombard you with information and don't always point you in a direction of where to go next. That's what happened with us. Don't get me wrong, they can be very good, and it has to be accepted they're often overworked. And the autism spectrum is a tricky business - I'm not sure how knowledgeable one can be about it if I'm honest!

    As for your guilt about how you're handling his difficult behaviour, I'm sure a lot of - if not all - parents of ASD children feel the same. My parents often say they feel guilty and confused about how they handle me, and from reading this I'm not sure if my challenges are comparable to your son's, especially with the other difficulties he has to cope with. So I'm sure sometimes it must feel like you have reached the end of your tether - mums aren't superhuman at the end of the day (they're closer than most, but not quite)!

    I hope I don't sound like I'm condescending to you. You have every right to think, "She hasn't got kids, she's still a kid herself, she's got no clue". But I hope I've helped. Like Sue said, you're not on your own! I'm sure he's a lovely kid and this will continue to develop as he gets older - I help out with the younger, more severe ASD children at school and they are the best people I know!

    Good luck!

    Liv Smile

  • Hi Brightstar and welcome! I couldn't just read this and move on though admit I don't have a bucketload of solutions for you.

    It's great that you've got the diagnosis for your littly boy and I know how it feels to be suddenly left to get on with it even though it's what you expected.

    Don't beat yourself up over how you've dealt with behaviour in the past - that's gone now and it's time to move forward with the diagnosis that you have. For a start I'd make a call to your local Children's Centre and ask for all the info they have for support groups, services etc that you need. Are you getting any help or support regarding his other conditions? Perhaps your Health Visitor can help point you in the right direction. There's a mass of good books out there on Autism - though pick carefully.

    In relation to his toilet training - I'm assuming he wears pants? Is it worth putting training pull up pants back on again  - just until you're ready to go through the reminding training again. It could be worth it to take some stress away for a bit.

    One thing I've learnt from my 5 year old is never to rush him or push him - things happen in his timeframe and he's a very happy, relaxed littly boy for it - we are only just moving him into pants, though he wears pull ups for school in case of any accidents. I know he'll eventually wear pants all the time but for now we're taking it easy with him and getting there slowly.

    The Spectrum? It's so massive - does anyone ever really know where they are on it?

    I just wish you lots of luck and patience - keep posting - and smiling - you're certainly not on your own. 

    Sue x