Sunday, January 30, 2011

Who needs a rollercoaster when you have aspergers?

Kneeling on the floor of the hall it took all my strength to hold my struggling son and prevent him from opening the front door.  My 9 year old aspie boy wanted to 'leave home'.  Apparently he had been so bold that he couldn't live at home any more.  He didn't 'deserve to'.  It was 3.15 in the afternoon.  Smiley's bus was due to arrive, and I had no idea how I was going stop CD escaping when I opened the door to let Smiley in. Who did I turn to? One of the Autie Mums on Facebook, one who 'knows'.  She calmed me down and organised help.  I managed to get Smiley inside, and then friends arrived, some to hold him, and others to put bolts on the door.  He refused conversation, food and drink: a very bad sign as that always makes him worse. 

Some four hours later he was exhausted and signalled that he wanted a hug and a drink.   But somehow I knew that this was not over.  Clearly something had happened at school, but what?  I thought I'd sorted everything out the previous day!   On Wednesday morning the signs were not good.

The shutters were down, the eye contact was gone, there was no interaction, no cooperation, he was lashing out at everyone and everything, and it was a huge effort to get him to eat, drink, go to school, wash, go to bed.  

They say all behaviour is communication, I just wished that this was clearer, because it made no sense to me.  What kick was he getting from this carry-on?

He told me that he would cause mayhem if I sent him to school.   Well I called his bluff as I don't believe in backing down in the face of threats, and certainly not from your own children!  He had to be put on the bus...and taken off the bus.  His behaviour meant that it wasn't possible for him to stay in the outreach unit and he stayed in the principal's office all that day.  He would not talk about what was bothering him...in fact he barely spoke.

I have a boy who always goes up to bed when I ask.  That night he didn't.  He curled up in a ball in the hall and refused to move.  I tried to talk to him, his Dad tried to talk to him, but still he stayed.  So I just sat it out and after four hours he came into the kitchen and pointed up to his room.  There was no other communication.

Thursday saw another meeting at the school, with the Principal and two of the outreach unit teachers.  We went over everything.  It seemed that he was not entirely happy about the changes put in place on Monday and then a very small incident in the school on Tuesday upset him.  Upset him?  Talk about a total overreaction.  The teachers even mentioned 'selective mutism', which I found very scary.  Then we called in CD, discussed further help for him and tweaked his school timetable.   He was asked to confirm verbally that this would sort out school for him.  And eventually, he managed to say 'yes'. 

I thought they were fairly small changes, and was on edge to see what would happen next.  But he got off the school bus by himself and was calm at home.  I dared to hope that things would get better.  The local autism services are now aware that there is a problem and have promised to take action.

By Friday morning I could breathe again, and he woke up on Saturday with a smile on his face. 

Yet as I write this he wanders into the kitchen with his head down and shoulders slumped.  "What's wrong?" I ask.  "I'm fine," he says.  I guess I'll just have to wait and see what this week brings.  The rollercoaster goes on. 


29 comments:

  1. Big hugs, what a week! I hope he can tell you what is bothering him over the next few days, maybe he doens't really know himself and it is a combination of a lot of things *sigh* Fingers crossed. Jen xx

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  2. Oh my, I wish I had a magic wand. What a couple of days you have had. Sending you hugs

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  3. Wow what a week is right, It is a scary place when they refuse to eat and tell you whats wrong :(
    Hope things improve for you this week. x

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  4. Dear, dear, Blue Sky. Sending calming thoughts to CD and sincere resolution hope for this time in CD's development. You have done a good job of weathering this particular part. You are helping others by posting this. Barbara

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  5. It sounds like he was completely overwhelmed, poor thing. It's so hard for our kids to deal with an environment like school - they have so little power over anything - they have so little control and so little say - I'm sure it makes them feel so lost.

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  6. I'm so sorry to read this...I'm sure it was just overt a week ago you thought things were better with him and school. I really hope you have a better week this week. Hugs. Heather xx

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  7. Oh sweety, I'm so sorry to hear this. I hope things pick up soon at school. I hate to even mention this, but could it be that he's maybe being picked on a bit? His peers are at that age where they'll start to notice differences between him and them more? *hugs* xx

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  8. I don't know how you cope so well with all of this. My admiration and respect are small comfort, but well-intentioned.

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  9. That's one scary rollercoaster...and I don't just mean the photo.

    What a difficult week you've both had:-( That is a scary suggestion they make...selective mutism.

    Maybe the "communication" in school could be made clearer around changes no matter how small they are?? They could sit him down each and EVERY time a change is made and discuss them? Consult with him.... might help him feel more grown up too??

    Maybe a social story around "using your words when you're upset" would help? Like "Tell an Adult what's wrong" With Picture of sad face..."If I tell someone they might help me and then I will feel much better..." with Picture of Happy face :-)

    It might help.

    Glad you got some help that day and sorry I wasn't around.

    xx Jazzy

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  10. Oh dear :( Hope that you have got to the bottom of it now and things will be less stressful this week. (((hugs))) xx

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  11. @jencull - Still don't know, maybe he can't fully articulate what was going on in his head xx

    @TheMadHouse - a magic wand would be great :)

    @auntiegwen - thank you xxx

    @lifeasweknowit - I hate it when they refuse to eat and drink x

    @TherExtras - thanks Barbara

    @Brenda - thanks so much for dropping in and commenting and I agree that control is very important to our children

    @SAHMlovingit - thanks Heatherxx

    @Marylin - you're absolutely right, he does get picked on, but this time I don't think it's that xx

    @Madame - thank you and your blog cheers me as well

    @jazzygal - I think the idea of a social story to encourage him to use words when he is upset is a great idea and I will add it to my to do list xx

    @Petunia - thank you xx

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  12. What an awful time of it for all of you. I don't know...does it help having someone that they have been there? My daughter has selective mutism-brought on by anxiety. She can be a chatterbox at home-but in any situation when she is on her own she can shut down-social stories have helped us...For my boys, I took stacks of magazines and cut out pictures of all kinds of peoples faces-expressions..and pictures of people doing things..sometimes when the words weren't there-they could point to pictures that helped to explain their feelings..don't know if that will help...hang in there...

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  13. Oh honey, crap!! Big hugs and I hope that between CD, you and the school you can find a way to help him communicate better when things are going wayward for him. Hope this week is better. xxx

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  14. Hi Looking for Blue Sky - saw your post on BMB and recognised a lot of my own son in what your wrote. So I thought I'd just drop a note and say hi and hope you have a better week.

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  15. hiya, nice to meet you! i have just followed you, and have just realised that i have been reading through your blogs for the last half hour or so!!

    i have been on a rollercoaster ride of emotions myself reading, i am in utter admiration of you and you family.

    look forward to reading more...

    tamsyn (http://manic-mums.blogspot.com/) xxx

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  16. Oh dear, you've had such a hard time and you are such a trooper all the time and now the roller coaster goes on and on...take care Hon, hugs!

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  17. I think Jazzy had a post on anger management (for the child, I hurry to add) some time ago - and, perhaps from there, I went and got a book called "The incredible 5-point scale" by Kari Dunn Baron and Mitzi Curtis. It is about teaching children with Aspergers to understand and control their emotions, basically by using scales rating them from 1 to 5. Being incurably lazy I never put the book to practical use but it is very convincing!

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  18. You have a tough job - sounds like even when you are handling it beautifully things can go up and down without forewarning. Glad you are living strong in the end.

    New follower

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  19. @kathleen - he's snapped out of the selective mutism now, but perhaps this is something he will do again when he is overwhelmed? If so I will be in touch x

    @Helen - it was thank you xxx

    @Aspie in the family - thank you so much for dropping in, it's good to meet other families with kids with aspergers x

    @Manic Mum - thanks for your very kind comments and for following :)

    @Lora - thank you x

    @Shopgirl - thanks for your comment and for following

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  20. our son is 14 now but everything started going a bit haywire when he hit nine. He didn't have a diagnosis at that point and the school would not recognise any of his needs. I think for him it was when he (and his fellow pupils) realised just how different he was. Related to the stage that the brain reaches around then...

    hang on to the car - and keep up the good work x

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  21. (((hugs))) I can relate to the roller coaster. My older boys (also 9) are very verbal but when they're stressed out / upset / etc. they have a hard time communicating. We've had some similar incidents, and it's especially hard when you don't know what's wrong :(. I hope ya'll are able to figure out what's bothering him, maybe when he's feeling better he'll be able to tell you more?

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  22. I'm sending you huge cuddles. What a week. I don't think I could ever understand or begin to imagine your strength. I just hope you know you are an angel and an inspiration.
    Thank you for sending me this link.
    I am off to be educated and learn some more about you and read this blog x

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  23. @Lou - Yes I got the diagnosis as he turned 9 and it was soon afterwards that his behaviour deteriorated. I'm seeing the differences between him and his peers here too now, sadly.

    @Danette - eventually I got to the bottom of the problem with the help of the school, but there have been more and more meltdowns since.

    @Mammywoo - Thank you for your lovely comment :)) xx

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  24. what a tough week! it must be so, so emotionally draining for you. not knowing what your child is feeling and them not being able to communicate must be difficult to watch - knowing that something is wrong but feeling helpless. i can't begin to imagine how it must feel and i wouldn't be any use with offering advice in a meltdown, but i'm a good listening ear ... x

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  25. What a struggle my heart goes out to you

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  26. @Hopeful mummy - sorry I'm only seeing this now - this post was when the difficult times started. And it looks as though we may be coming out of the other side now :)

    @Claire Toplis - yes I will never forget that day

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  27. Hi, I've just read this through #archiveday - what a stressful week for you. It must be so hard when you can't find out what's wrong. Wishing you all the best on your rollercoaster ride.

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