Here some suggested organisations that offer expert advice on SN.
The view from the edge seems nice(12 Posts)
We didn't have much of a holiday when dh was off so he booked a few days off and we've taken the kids up to Yorkshire as they're all outdoorsy. They're 7,6 and 3. 6 yr old DC has autism and ADHD and it's great for her to be outside. Youngest also has autism. But every trip with the three yr old has been horrible. We took her to a country park. Hardly anyone about, free to run and she spent all of it sat on the floor in the dirt. After an hour and a half I brought her back to the car. Screaming and mostly dragging her. We end up doing things as two families. One with the older two and one with our youngest. I'm sick of it. I know her condition is horrible for her but she spoils everything we do. I'm sick of dragging her along because she won't be carried and is too heavy. Most places outdoors we can't take her buggy as we've tried. I love her but I resent her massively. I overheard someone complaining to their young child that they'd gone the wrong way and he was meant to be with her (he was with his dad) and I wanted to scream that she was lucky that was her only problem. I'm becoming really resentful of people complaining about their nt kids and I'm sure they have bad days but stuck with a non verbal, screaming child who doesn't want to do anything is starting to wear thin. My dh says he gets it but really doesn't. Three nights out doing his hobby indicates that. I don't know how I'm going to survive this. I did it once with my middle and I don't feel I have anything left. I can't talk to my mother as she just says "well that's family life". She has no clue what it's like raising three kids two of whom have autism. In short I'm tired, angry and wondering how the hell my life will ever get better. Currently I main line chocolate.
I totally sympathise. My DD is 11 but still ruling family life with her reluctance to do things. My DH and I also tend to take a child each, which usually leaves me with DD as she is so clingy. I don't have the answers I'm afraid as parents of nt children don't understand and even family don't truly get it. People here do understand though which is why I read (but rarely post).
I think you need an all terrain buggy Msqueen!
All terrain buggy. Useful for carrying stuff too. Dd is NT (sort of) and still needed a buggy to retreat to until she was 5, and quite frankly I wish it had lasted after that..(wheels began to sink into mud at weight of dd)
We also found that splitting the family up for a lot of expeditions and trips worked better, if necessary 2 of us (I adult and child) stayed behind.
I think it is also the "transition" thing. If it was the same park and the same time of day it might be easier for three year old - that doesn't help when you are planning special days out, but I suppose it explains why to them a treat is far from fun.
I think for them it is basically fear with the autism - too much space, new space, new situation and a massive overload, coupled with journey itself, and demands from adults add up to a toxic cocktail, not just that the fact that 3 year olds can be horrible on trips anyway.
We have been through this and pretty much do things separately because of this. We have had many tearful holidays when do was smaller when he would just scream and cry wherever we went. It was a bloody nightmare. What has helped is accepting it. We have grabbed as much respite or play scheme for kids with special needs as we can, though there isn't much! We do lots of stuff separately with a child each. We don't bother taking ds to places he won't cope with. We go on holiday now without him and he boards for a week at school while we are away. Our dad is also autistic but copes better with being out and about so with some adjustments we can still have a nice time out. It is shit and I really do sympathise. I think some kids do improve with age so it is possible. Our ds enjoys going out more now but he really needs to be individually looked after whilst out so family trips are off really.
I'm really resentful of parents complaining about their NT kids.
They wouldn't know what they don't have (I'm sure that's a saying) so it's not their fault. My neighbour has a child with cerebral palsy and he cannot walk far distances and running gives him pain so most of the time his on a wheelchair . I was at our local park and she happened to be there and we got chatting; I was complaining to her that I was getting tired of DS meltdowns etc. She happened to quickly see my DS running about and said that I shouldn't complain too much and that I was lucky, in spite of DS condition, that he can walk, run whereas her DS is robbed of that joy.
Your youngest may not like the new environment, sensory, the changes. Do you prep her before she goes out? Maybe doing a timetable and showing her a picture of a place she's going to will help? Don't be discourage to take her out..keep practising. My DS didn't have this issue, but he liked to do things on his own terms, so when I took him out he hated going to places which considered boring to him (rigidity) and would kick off. So every time I would draw out a visual timetable and as practise, I kept taking him to places which he found boring.
Now DS hardly complains ! his now at that stage where that I don't need to show him a visual timetable and I just tell him the (boring) place that we are going too. I was a bit flexible with the timetable as I didn't want to increase his rigidity... So even though the timetable said that we were going to bus stop then the store. I would pop into the chemist l, then go to the bus stop then the store.
It's just practise OP, don't give up.
I think the key is acceptance that whilst you can not do the activities you envisaged when they were bumps in your tummy you can still do stuff that you and they enjoy even if it means splitting up the family.
We have actually just come back from a few days away where we did virtually everything in two groups as the ds's have so little tolerance of each other at the moment and can manage much more apart than they can together. So for the first time for about three years we have come back relaxed with everyone having had a good time rather than me vowing never, ever to go on holiday again because it has been so stressful.
For my two just being in a different location and having to sleep in an unfamiliar bed pushes up the anxiety levels which means they have less capacity to cope with things. Add to that lack of routine, going to unfamiliar places, lack of places to escape to and no PC or trampoline to help destress you can begin to understand why it is difficult for them .
I too think you need an all terrain pushchair (sounds like a good use of DLA). I'd go further and give her a lolly or something equally peacefully enjoyable so she starts looking forward to trips. I assume you do stuff she likes too, so the others could have similar accommodations for that.
Thanks all. I just needed a moan really. She seemed happier later in the day when we went into the town. She is a funny mix and I never know what she will or won't like. Suppose it's a case of keep on going. I know we need to keep trying her in new places. She's very uninterested in visuals at the moment but will keep going. I think I just need to accept things it's the low moments it really hits me hard. I hate seeing her struggle and not knowing how to fix it.
You are perfectly normal to feel as you do . It is v hard. I remember many ruined days out when my son was little when we gave up and came home. It was a far cry from the family life i envisaged!
I have a friend who coined the phrase "acceptance is peace" and i agree that it helps to throw the rule book out the window and accept that your life is the way it is and not necessarily the way you thought it would be!
Sending a big hug x
Thanks all. I'm just so tired. The toddler years with both dd's has been awful. I keep plodding along but feel so low. I hate them both struggling so much. Eldest is also carrying a lot on her shoulders. I feel like I'm failing all round.
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