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Let him down once again this morning - how do you cope?!(12 Posts)
This is my first post but been lurking for some time. We are nearly there with hopefully getting a dx of ASD for DS, although I'm not really sure if it will be ASD / SPD or both.
I know there will be no magic answers after dx, and as he struggles more with life I'm torn between understanding more about his funny little world and also feeling like I just can't cope with the daily battles, struggles and meltdowns, and the effects this is having on the whole family including other DC.
Sometimes I get it right. Mostly I feel like I'm wading through treacle. This morning was a disaster. New school shoes. Need I say more! We were late for school once again. I was shouting once again and DS was in full scale meltdown once again. I left him at school with him shouting that he hated me and me shouting that it was all his fault . Younger DC almost in tears and another drive home from the school run with me in tears.
How do you cope with this every day? I know there are so many worse things out there and I am blessed to have well and healthy DC's, but I'm running out of reserves. I'm working hard on understanding how life is for DS and looking for strategies to help him, but could really do with some strategies to help me, so that I can feel a bit more on top of life right now.
I'm sorry, that's so hard. You can't smooth out every bump in every road. You can only try and pick the smoothest route you can see at the time.
Thank you. You're right. Maybe I'm trying too hard and then having the inevitable fall!
Just sending some understanding here, been there! (son with high-functioning ASD and SPD) I know that wading-through-treacle feeling
Yes absolutely you can't smooth out every bump, but I have found it has got gradually easier as he has got older. We still get the meltdowns but less frequently, and I am getting more of a distance from the 'I hate yous', as in between them things are getting easier. (He is also getting more creative in his expression of them - at the weekend he made me an animated gif showing how much he hated me, which was better than the screaming and hitting!)
The school run is always a high-trigger time though - transition, going into a place where other people are in control, doing things to a tight timetable, etc etc.
My boy is 7 now and in year 3, how old is yours? Are you getting support from somewhere as well as going through the process to dx?
Hiya, I replied to your post because of your use of the expression, 'wading through treacle' - that is exactly how I used to feel! Does your little man have the support he needs in school? The reason I ask is my son had the most rigid, inflexible behaviours when he started school (and to a degree nursery before that). Once he had support in place, he became more flexible (not flexible as you and I maybe but you could get through the day!) Since his move to special school, this has increased even more. Don't get me wrong, we live a pretty restricted life in lots of ways but he isn't rigid about every tiny little thing every single second of the day if that makes sense. He was always a happy little soul before he went into nursery setting - with hindsight, I can see that was probably because I had started to panda to his ways (or meet his needs!) without even realising it at home but things really kicked off once he was in school. Are there any training courses in your area? Ask your paed if you can be referred to one, once diagnosis is forthcoming. We got diagnosis a year ago and things have really moved forward for us in that time.
Thanks system and onestep. I had to smile at your clever DS putting so much effort into telling you how cross he was with you, bless him! Great to hear you are finding ways to manage. Ds is 9 now. We have suspected for years that something wasn't right. He was a really difficult baby and toddler but assessment at that stage told us he had traits but that they couldn't diagnose at that stage. We seemed to have a lull for a few years when things did get easier but the last year has been really tough again. Not long till referral now and I've signed up to a few courses locally and have joined a parent support group which has been brilliant. I feel a bit like I'm nearly at the top of the mountain if that makes any sense at all?! Its been a long journey, all consuming and I'm tired now, but very hopeful that soon we will be turning a corner as if we can get a dx then I can really start to put things into place at school, which is a huge source of anxiety. Even though he presents as an almost perfect pupil, its a coping mechanism due to anxiety and then it all comes out the minute I pick him up.
Sounds so heartbreakingly familiar. Ds now goes to bed half an hour earlier and gets up half an hour before dd - this quiet time helps him settle and get organised and he willingly goes to bed earlier because he can feel the difference it makes. It was hard to convince him that it wasn't a punishment but after 2 weeks he knew it was the right thing for him.
Like you my school runs were a real trigger point, made worse by the need for me to be at work once the DCs were dropped at breakfast club.
Very often the first part of our car journey would be filled with me ranting and crying, DS yelling and DD wailing.
Then we had a massive incident after school one night where DS attacked me and I could no longer function. I as signed off work with depression and put on ADs. I was on them for about 3 months. During that time I learned to stand back and reduce my OWN anxiety in the mornings. I decided that if we were late we were late. That being late was better than us all being in a state. I actually told my boss what was going on and he was remarkably understanding.
Also with DD sensory issues are her triggers and so I made a decision - if her socks were not OK that day she found a pair that were. If they weren't school regulation then so be it. If her shoes were an issue then she found a pair she could tolerate that day. If her tie was a problem it went in the book bag.
The HT pulled me up on it once. I told him that my relationship with my DD and my mental health were far more important than black shoes, white socks and a tie. If he wanted her to wear a tie then he was welcome to get her into it once I had dropped her off.
Good luck with your DX.
Gosh, never that's a really really good point. These things really aren't important! How freeing to see it that way! It's one of the reasons I'm hoping we will get the dx this week so I can hold my head up and stand up for DS with things like that. Need to also start the visual timetable earlier on a school morning I think. Shoes, jumper, coats and socks all real problem areas. I chilled about the sock thing and he went barefoot in the house... and got chill blains!
Yes I found getting a dx made a big difference in the way we could work with the school; once you have it in writing they have a legal obligation to make reasonable allowances, and you can have constructive conversations with teachers about what these could be. I have found a need to remind them of his dx once in a while ... Good luck!
Strategies that have worked for us getting ready for school in the past have included:
- getting him dressed by 8am so that he has half an hour to calm down from that bit before leaving the house at 8.30am
- letting him get dressed at the absolute last minute so that he feels in control
- me getting him nearly dressed but him doing the last bit (eg arms through sleeves of jumper) and gradually building up the amount he does himself - combining dealing with the demand avoidance and giving him control
- currently: if he gets dressed himself four days out of five, he gets a magazine on a Saturday. Ideally the Dr Who magazine although unfortunately that's fortnightly. And of course then Saturday is disastrous if he doesn't get dressed four days out of five, but that's only happened once so far.
You will note that several of these strategies contradict each other ... different things have worked at different times!
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