Am I getting it all wrong?????

[emsylou]

I have ds who is eleven who has high functioning autism, I am a lone parent. I also have a dd who is eight years old. we were invited to a bowling party. It was one of my friends sons tenth birthday. my friend and her son have had a difficult year so this bday party was really important. I have left work to help care for my ds better so we are on benefits. the bowling went well and i had prepared my ds for this event. then it transpired we were also eating out. first it was going to be pizza hut but they were fully booked and we ended up going to old orleans. my ds had not eaten there before. i didnt want to stay for food as we did not have moneyt in the budget for this but my friend insisted. my ds eneded up ordering something he didnt like and wouldnt listen to me. he didnt go into melt down which was great but left the restaurant which i thought was good. he then had the runs due to all the stress. my friend was annoyed with us for making everything difficult. because my ds is articulate everyone thinks i make up his issues and if i was just firmer with him he would be ok. my ds has been assessed and diagnosed with autistic spectrum disorder. he is a pupil in an enhanced asd provision and is doing well. how do i help people understand? i think people think i just make excuses for his difficult behaviour. this is not the case. And being overly authoritarian does not work at all. believe me, i have tried everything. does anybody else experience these views, even from their friends. Maybe its me, and I am getting it all wrong. I would really value any input. sorry for the long ramble.

This sounds very typical of me, you're not doing it all wrong at all!
A lot of my friends have stopped bothering with me and my children, purely because they ont know how to handle my ds2's behaviour when he does have a melt down, or gets over excited.
So sorry that the party ended on a down, but at least your ds managed the bowling alright.
Your friend should be more understanding, but with most people, if you havent got a child with an ASD, you really dont "get" it.

I don't have experience of ASD, but am sure someone will be here soon who does. You sound a great mum.

I think your friend was being very inconsiderate. You can lead a horse to water but can't make them drink - so I think no point wasting energy making people understand - either distance yourself from those who don't, or accept it. sometimes people genuinely think it's helpful and supportive to minimise the problems of kids with SN.

you are right about the energy wasting issue. i can gettoo caught up in what others think sometimes. I wish people could ignore the more undesirable behaviours like i have learnt to do. That works really well. Thanx pheasantplucker, i dont feel like a very good mum most of the time, but i try as hard as i can, and cant do more than that. my ds can sometimes be worse when im around which fuels peoples views that I am the problem.

Not ASD ..... but, I wrote letters to all my friends after my son was dx ADHD. It wasn't to make excuses for his behavior or ask them to feel sorry for me, but to tell them that it was official and that was why he was the way he was - iyswim. The letter also helped me 'off load' many emotions I had kept inside and was a great release. Some accepted, understood and appreciated it, others said nothing and I haven't heard from them since - fine by me.

My true friends are still there and supporting us

and the bowling did go really well. And their team lost, I could see ds anxiety levels rising but he had fun bowling. Focus on the positives, def a good move. Thank you all so much

That letter idea sounds like a good idea.Though I have realised as I have been writing this that most of my close friends are supportive and great and although they dont always understand, they never judge and they listen to me about my ds. Maybe this issue says more about this particular friendship and the quality of it.

tclanger, how were your family with your son running out of the restaurant? do they understand? how old is he? my son is such a big 11, size of a 14/15 year old. his more undesirable behaviours seem even wierder now that he is so big. Not to me because I love him and he is great but to others I think they just think he is a big baby. Its hard isnt it. Am loving mumsnet!!

i think your friend was being doubly inconsiderate, both from a financial point of view and for not trying to understand that it had all become too much for your ds. you can only do what is best for your lo in these circumstances, and if others don't understand, then it is their problem.

we often have to leave social situations, and we just do it as quickly as possible if it looks like ds is becoming upset. no point in dragging it out!

good to hear that other friends are more supportive.

Thanx raggedrobin. am now up with a sick dd!! has anyone else made the decision to be out of the workplace to look after sn child, well all family actually and ones own mental health. I def feel it was the right decision for us regardless of the lack of finances. Money isnt everything eh? Happy Monday

I've sort of ended up in that position by default - my experience of private nursery was so demoralising, that now DS is back at school I'm scared of putting him into childcare after school/holidays, but don't want to be working every evening (the only evening jobs I can find are all 5 evenings a week X six hours, so I wouldn't have time to see him and do any SALT stuff with him in the week).

Hi emsylou! You sound a lovely mum! I am sure we all worry about our parenting but coping with other peoples expectations and lack of understanding is an real confidence knocker. I often have blue days following family parties or social occasions.
I never returned to ft work after ds (now 9) arrived - although I worked more pt hours in the preschool years than now. I have tried to work more but childcare for a sn child is difficult, especially as they grow older. But time is the biggest factor - ds needs loads of it! Although DH is away a lot he often plans his work trips around ds needs - ie he will sometimes plan to be in the country to avoid me taking a day off for a teacher training day or whatever. It must be very hard as a lone parent!

thanx magso, I am finding it much easier now that im not at work. I had a career that i had climbed the ladder in over a ten year period. I have just started a cleaning job one afternoon a week just to give us a bit of extra money. Was just thinking about going back to uni. I have a degree from my youth but thought it would stimulate my brain cells a bit, oh and give me something else to talk about!! Magso, what sort of work do you do that leaves you free in hols and after school? Is it a job you can forget all about when you leave at the end of the day? your DH sounds helpful, must be hard for you when he is away though.
Totalchaos, do you enjoy being at home? how old is your ds? Does he prefer you at home? Thanx for feedback

emsy - DS is 4.10. I think he does prefer me at home. As to enjoy being at home - yes and no. I feel a bit removed from adult life at times - am probably going to sort out some voluntary work for school hour to give me more of a focus. I could really do with some extra cash too (couldn't we all LOL). I do mystery shopping when he is at school, but it's not a reliable income stream.

Hi emsy. I have 2 asd kids. ds3 is increasingly obviously asd but ds1 is not, he's as /hfa and like your son people just see the exterior (he's 9). it is hard, they expect far more of him than he could ever fulfil and in turn that makes it harder again...

your friend was out of order insisting on the meal, she should have either acccepted your reasons or paid (or done what we have, nt ds2's bowling party in 2 weeks and food included).

my sister is much like your friend: she argued that school shouldnt have to make adjustments, I said but they have to for disabled people 'oh yes proper disabled people, though' (ds1 gets higher rate care, statement etc!). you have to accept that some people are so ignorant they will never understand that you can be disabed without needing a wheelchair. and it might be you need to rethink this friendship if she makes yu feel bad.

Oh i'm also at home- had to accept I couldnt do my pgce when I graduated. applying to do voluntary at school (crb going through) but childcare is a massive hurdle for anything more

I don't like the feeling of being forced iyswim. When I worked I was desperate to be at home (and I do have a 9 month old baby) but its the no choice that gets me.

thanx for your feedback clarissimo. goodness, you have your hands full! I need to get better at having the confidence to leave situations when i can see anxiety brewing and be less concerned about others opinions on the matter. My ds is currently at school full time and has been for a couple of months but voluntart or casual work is def the only option as when he isnt able to be at school you need the flexibility. My dd is off school today as she is unwell. These things happen and i like not feeling guilty about letting people down at work. when i was working full time i was under achieving at work and home. now i am a bit more on top of my game at home. ds and dd def happier, thats what counts. thanx again

Well that is the problem - I do have to work holiday time. I had a career (research/ teaching/phd) but have fallen back on my basic training and work in the nhs - I am getting out of date in all but the area I still work in and feel a bit of a has been carreerwise!! Frankly without a flexible employer,( I occasionally swop days and now work short hours) supportive dh and a lovely local small afterschool/holiday club who cope with ds I could not work at all. I try to fill in at work whenever I can to remain useful and flexible! I have tried to find local part time work, (anything from library to shop work)but most employers want more hours than I can give.

don't know if it's being in reception or just one of DS's quirks, but he gets mild tummy bugs ridiculously often, so if I'ld found a job last September I'ld probably have ended up sacked anyway!

magso - I've applied for library jobs in the past and never even got to interview stage, I think that they are surprisingly popular. With shop work the hours don't tend to be family friendly. I was put off applying for Waterstones because they said that they would only give you your shift pattern once you started work

i hadnt thought about library work. we have just had a big new one built near us as well. even some vountary work there would be interesting.

I looked at an MA in librarianship but we couldn't cope being even further away from the family (was iN West Wales, only other one in Sheffield- even further!)

Currently considering social work and I know my career history maes that a sensible choice but the childcare here- it's not even wortha skinG! I know there'd be an en masse walkout if they took DS1, plus the centre is owned by a classmate of ds1's anyway

DS3 and ds2 I could place like a shot mind- ds3 has poeple queuing up LOL

It is hard trying to find the right childcare placement. childcare outside the family is a no no for my ds. And as my parents cant commit to regular childcare at the mo hands are tied, seems like you are in similar boat. especially all the placements that you have to do on social work training. ho hum! keep in touch clarissimo.

I know what you mean about 'under achieving' both at home and at work. I find having to rush off (to collect ds) difficult, and being on the edge (like an occasional shadow!)of a team not a full member very stressful. Equally not keeping on top of the chores or having to juggle ds needs and appointments is also stressful. I have been much happier since I stop trying to work more hours and Ds is too. I never quite get ontop of the chores though and the garden is semi wild!! Money - or lack of it is a constant issue but it is for almost everyone though I feel dh thinks I am lazy for not working more! (Perhaps I should go and iron now!!)

magso does dh really think you are lazy for not working more???? surely not. going to work is a walk in the park compared to parenting, especially a sn child as you never know how each day and night is going to go. my garden sounds like yours! I look at my neighbours gardens either side of me with envy, all well kept and then i remember, they dont have children, or chickens or a dog. All the things I have just to make life a little more difficult, hehe. Am sure your dh would much rather you were working less hours and less stressed. I hope so. My ds had a good monday at school, came home in taxi half an hour agoi with smile on his face. woo hoo. I havent ironed in years, is liberating. Am a lone parent without any dh clothes to sort. school uniform gets hung straight up when dry and im just a slob, probably why i am a lone parent, but a happy one.