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Bad day

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Today has been a school holiday which usually I love but I've been really struggling over the past days.  I wouldn't change anything but the past few days I've been struggling and that makes me annoyed with myself.

Both my older sons are on the autistic spectrum.  My middle son has a lot of issues with social interaction and doesn't have any friends in his year at school (although interacts well with his brothers and adults).

If my son is anxious he will often wet/soil himself at home ... generally not at school.  He's not done it for some time but over the past few days it's been happening more and more.  Today twice.  To my shame, I got cross with him about it this morning and I feel so ashamed.

Both my husband and I have tried talking with him and bringing the subject around to anything upsetting him but he can't tell us and we don't push it.  He's seeking a lot of reassurance and this evening I heard talking in bed saying "My Mummy loves me, I love my Mum.  My Mummy loves me, I love my Mum" over and over again and then the same about his Dad.  I feel so bad

One of his traits is constantly talking in a monotone, listing what he's going to do or what he's done ... sometimes he will look for us to listen to him and other times he's talking to himself ... but there's nothing being said to give us any clues what's bothering him.

I love my boys and wouldn't want them to be anything other than they are but sometimes it breaks my heart that my lad is limited in his communication.  We took a picture on holiday (well lots!) and when we looked at it later realised that he was sitting in front of a garden with a "private" notice on the gate ... the word "private" is right beside his head and it seems to appropriate ... his wee mind is private and I can't be part of it!

Sorry for rambling on, I feel blue and have to keep reminding myself this isn't all about me.

Hello ginger gnome,

How are you today? Are things going any better? Please don't be too hard on yourself - we all have our moments where we know we could do better. Just try and remember all the great things you've done for your children, I'm pretty sure it'll outweigh all of your "less than perfect" moments. If ever you want to talk anything through with another parent you could try the NAS Parent to parent line:

http://www.autism.org.uk/Our-services/Advice-and-information-services/Parent-to-Parent-Service.aspx

And of course, please feel free to vent on here - I'm sure plenty of parents here will identify with how you're feeling. If there's anything we can help you with, please do let us know.

Sandra - mod

climb another mountain

climb another mountain, may be the last thing you want to consider, but as a prefered mute in my child hood and still often now. I think that makaton may help as it is a language that is simple. I have had a hell of a job finding out about it but the help line people may have a better idea.

It seems I am being selectively denied the option of silence and the peace of mind it brings, I am sorry your boy has such a locked in life. if you and he like pictures then a large cork board on the wall with picture for the week or day may break the ice of each days how did it go and how are you.

i had an idea that a broom handle hung side ways on the and devided in to am midday and afternoon and evening, then have ribbons a hook or in a box.

Red ribbons for angry. Orange for for anxious. Yellow for ok but unsure . Green for good or ok. Blue for unhappy. Indigo/light purple for quiet and calm. Violet/ dark purple for excited and dancing inside.

This is a pre set to you describing what you call emosions and how you see them and then he can begin to tell you how they are for him.

For example I do not like happiness or excitement because I get adrenaline rushes that make me shake and quiver inside it is uncomfortable so while others celebrate I am in dire straits and do not relate to the keeness to enjoy this way of being.

So if you set yourself up and have some thinking time as to what you agree to use as explanations, the descriptions you use need to be assesed what the impact is when taken literally and then the naming will possibly stick for ever so, don't rush at this.

With a chance of expressing his emotions you could take the to off a volcano to start with bet all the family can join in and have handles of their own. If you can dedicate time and have a session over his ribbons in his room each day then its a good spot. if not then it may need to be in a hall or ona alanding as a common passing spot so everyone can notice how he is, but NEVER let this be a matter of teasing or ridicule.

A family rack of emotion sticks is not a bad deal and can help if you have a busy household. You will need lots of ribbons to tie on the sticks and it is ok to have different colours in one time slot.

A look at the patterns and a diary to not the colours will let you see if there is a pattern and if it is alwayd in the day you have swimming/ peanutbutter of go shopping you can begin to narrow your aim on questioning about what's up for him. to what happens on tuesdays, fridays, etc

WB

Shut in or shut out what's the difference if you are out of touch.

Thank you Sandra for your lovely reply ... I'm feeling so much better now ... Monday was a really low day for me.  MS has had an OKish week ... he's been a bit volatile at times and soiled himself again today but he's had a fun day playing with his brothers.

Wolfbear, thank you so much for taking the time to write ... you've given me some great ideas and I really appreciate that.  MS knows quite a bit of Makaton which he uses at school as there's another wee one in his class who uses it.  It's maybe time I learned too.  I really like the idea of ribbons ... that's fantastic ... would be really useful.

Thank you both ... it means a lot to read your replies.

GG x

Struggling

My beautiful boys, I love them so much but the past few days have been so hard.  Family members can make life so much more difficult can't they ... my Mum says she supports us but disapproves of me going to any Autism Support groups as my boys "aren't difficult to handle".  She told me she was embarrassed taking them to the summer activity scheme (obviously, next time I'll make sure they go on days I can take them myself).  It really makes me doubt myself and what's going on. 

MS has no dx yet but his behaviour is getting more and more difficult to handle.  He had an outburst in school this week that worked him up so much he was ill.  His teacher and SA spoke to me about it and both said the school needs to take a step back and consider, with us, what's best for him ... I'm so worried.

ES is a totally different kettle of fish ... very popular in school although he does get anxious in unfamiliar surroundings.  But he's never aggressive and copes well with life ... he's even managing to cope with his music lessons and assemblies in school.

Our schools are on holidays this coming week and we're off for a few days which I'm really looking forward to ... no mobile phone signal and no internet access ... just me, DH and our boys ... bliss