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It just shapes everything, doesn't it....

(5 Posts)
Triggles Mon 11-Jul-11 21:27:19

I was sitting here tonight thinking this. Everything we do, everywhere we go, what we eat, when we sleep.... it's all shaped by SNs.

DS2 has such a particular diet - I can see it has slowly altered what we cook and what we all eat as a family, not just him. Because while we try to introduce new foods to him, we have to make sure he still eats. And I can see DS3's diet being a bit more limited than it should be because of it. So I need to make a bigger effort to add extras in for DS3.

We avoid certain places due to crowds and noises. Whenever there is a school function, I have to find out specific details of what's going on, who is going to be with DS2, and what precautions are being taken for him. Gone are the days like when DD was young that I just said "that's a nice day for you" and signed the form and sent the money with her to school. Now's it instant panic and a fleeting thought that it would be easier to just keep him home that day.

Now that DS2 has figured out how to open the safety gates in the house, until we find an alternative, it is affecting our sleep as well.

I feel horribly selfish even thinking these things. I think it's because I'm just at a low point and feel a bit swamped. I wouldn't trade DS2 for anything - he's a lovely little boy. But it's definitely a full-on experience dealing with it all...

I just need to pull myself together I think....

tiredmummyneedswineandsleep Mon 11-Jul-11 22:01:19

aww I so know where you're coming from. I had a cry myself over same matter yesterday. DS had 2 party invites. Went to first which he couldnt handle and was pretty out of control, most of the children at the party were on the spectrum but all seemed to manage the party. J was wild and even more hyperactive, tantrum prone and non compliant and loud then normal.
The second party I left him outside in friend's car whilst I popped in with present. All the other guests were sat about talking etc as most people do whilst their children sat with them or played nicely. DS would have ran about wildly, touched things he shouldn't have and insisted on going upstairs into the bedrooms.
I have also missed extended family bbq's lately as I can't bring him to such things. I feel so sad about it all. My cousins can meet and bring their DC and enjoy themselves and the kids have fun. That simply doesnt happen for us as he cant handle it.

Friday, pre school are going for a walk around local area and I'm already worried sick about it despite him having a great 1:1. I'm going to have to send his reins incase he doesnt (most likely) hold her hand. He likes to run off not hold hands and thinks he's a bloody 'steam engine.' If you try and hold his hand he shouts 'get off my wheels' or get off me, you're hurting me.' etc..

Really sympathise with you. It does affect everything doesn't it. We will be at the S Centre tomo 10-12 if you fancy a catch up .

Take Care

EllenJaneisnotmyname Mon 11-Jul-11 22:15:27

Tell me about it! And it doesn't seem to get much better. Every social event, family event, trip to the park etc is limited by how long DS2 can stick it. I've taken to taking the iPod touch with us to keep him going for longer, not good parenting for him but he's not the only one in the family.

Agnesdipesto Mon 11-Jul-11 22:20:04

You can get alarm that goes on the side of the bed and goes off if you cut the beam - or fix it to a door or mats where alarm goes off if you tread on them

Our OT (social services OT not NHS) said they could organise wandering alarms for DS when he outgrows gates (or could try community nurse)

Triggles Tue 12-Jul-11 08:17:17

tiredmummy - I'd love to come over to the s centre, however, I need to meet with DS2's main TA this morning at school, so I can't come over this time. Please PM me if you'd like to get together another time though! I know this time (end of school year) can get a bit hectic!!

EllenJane - yes, that's just it, isn't it? DH's family is having a big celebration evening in a couple weeks, and it's caused all sorts of chaos and frustration, resulting in the plan being DH going, and me staying home with the boys, as it is a pub evening and obviously the boys can't go. (they know we don't really have any "outside the family" sitters due to DS2's SNs hmm) Your schedule must be a bit nuts right now too, with end of school stuff! Our TA is a bit frustrated as the paed's group has called a group meeting on the last day of school in the morning that she wants his TA to attend. hmm The school has cleared it, but I felt so badly for the TA, as who wants that type of hassle the last day of school?? (I apologised profusely to her for that, even though it wasn't my fault!)

Agnesdipesto - I didn't know that!! Thank you for that - I will be looking into those!!

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