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My family is falling apart (severe autism / disability of child related).

(57 Posts)
Fairylea Wed 03-Jun-15 14:06:44

I just need to let this out somewhere.

My life feels like it's literally holding on by a thread at the moment. Our son aged 3 is going through assessment for autism and developmental delay and my dh and I are literally struggling to hold everything together emotionally. Things are so stressful. My dh has a very demanding job and he is so stressed with the whole situation with ds he keeps making lots of relatively minor mistakes at work but because of the nature of his job he is terrified he is going to get the sack.

We have an older child aged 12 who I am desperately trying to keep an air of "normal" together for, even in the midst of everything redecorating her bedroom to make her happy and trying to have days out as difficult as they are for all of us but underneath it all life is just horrendous right now.

I feel like I'm struggling along trying to do my best... I applied for dla for ds, which we were awarded highest rate for and carers allowance for me which has made things easier financially but there are no support groups in our area. We are on the waiting list for ds to see the paediatrician (probably August- I've rung and that's the earliest they can say!) I've contracted the school he's starting pre school at in sept and they've been very good and arranged 1 to 1 support for him and also SALT.

Most of the days are just ds and I and I try to do things with him everyday but he can't go to toddler groups as he can be quite aggressive and possessive and doesn't know how to share and has no interest in anything. He doesn't even seem to care if dh or I are there, he is just stuck in his own little world. He doesn't play with anything, hardly speaks and has huge meltdowns which make it very difficult for us to do anything or go anywhere. I feel like a prisoner in my own home as he is so routine led and if he doesn't have his nap for 2 hours a day in the cot at home in the dark all hell breaks loose.

I've applied for a holiday voucher from family fund and I was all optimistic about it but now I'm feeling like it's all a pipe dream and how on earth are we even going to manage ds for a holiday in a strange environment (even a caravan is a strange environment) and without all the comforts of home.

Feeling so low and so worried about everything. The future.... dhs job... ds... I don't know what the fuck I'm doing half the time or how to get ds to interact with me. I've Googled every group and charity I cab and watched enough you tube videos to send my eyes square.

Just so lost sad .

I've posted on the special needs boards before but I can't keep up with the general threads and I wanted to start my own in a more general area.

FujimotosElixir Wed 03-Jun-15 14:11:09

im really sorry youre going through this my ds had asd but more aspergers, with the correct support he will get better around kids i can guarantee it, when tou say he has no interests what do you mean? how does he fill his time?

Fairylea Wed 03-Jun-15 14:14:12

Thank you. I really hope with the right help he can make some improvement.

Interests. .. hmmm! The only thing he is interested in is road signs or exit signs or toilet signs. That is literally it. If we go out somewhere he will run over to a sign and want to touch it (which we try to accommodate as much as we can) but he has absolutely no safety awareness at all and will run into a road to reach a sign - obviously we use reins all the time so he is safe.

At home he wants to line up road sign toys he has or look at road sign books or look at road signs on my phone on Google images. That and running about the garden in circles and not much else. That's it. He has tons of toys and doesn't play with any of them. At all.

ImperialBlether Wed 03-Jun-15 14:14:48

You poor thing. I don't have any experience of this but I did have a very disturbed and violent brother and I know from that how difficult family life can be.

One thing - you and your husband and your daughter all need a break. Would it be possible for your husband and daughter to go away for a few days (even just to relatives) and then you go away with her for a few days, too? It's relentless, otherwise, isn't it? I know you will want to go with your husband but surely it's better that you each get a break rather than neither of you does?

Owllady Wed 03-Jun-15 14:17:07

Hello fairylea,

I have a much older child (15) with a severe disability including autism. It is hard in the early days.

Firstly, have you been to the Dr for yourself?
Have you any contact with the children's with disabilities team?
Have you got a portage service nearby?

You say he is three which presumably means he can start accessing some sort of pre school service (even if this is in an SN setting) have you spoken to anyone about this? Back in the day my HV was pretty helpful, but it might be worth looking at voluntary sector organisations by you who will have more information about your local options.

Hang in there x

ImperialBlether Wed 03-Jun-15 14:17:36

I would go back to your GP and tell them you desperately need help. It's no good to anyone if your marriage breaks down, your husband loses his job and you have a nervous breakdown. Tell him/her how serious it is and how lifelimiting it is for all of you.

ImperialBlether Wed 03-Jun-15 14:19:29

Have you seen this page?

insanityscatching Wed 03-Jun-15 14:19:49

First of all sending you unmumsnetty hugs. About 17 years ago I was in the same boat as you are now and the helplessness and hopelessness was awful. Your ds sounds and awful lot like my ds was back then and I really wondered whether we'd survive. I won't lie and tell you it was easy, at times it has been hellish but we are all still here together and ds is wonderful now and we have a dd with autism too aged twelve.
It sounds like you have some support in the pipeline but could probably do with more so try contacting the National Autistic Society for local support ideas,MENCAP and the children with disabilities team at social services.
I recommend here for support and advice specific to ASD.
I'll be honest and say holidays when ds was small were more like survival exercises but like everything else as we learned more they became easier as we adapted and adjusted our expectations.
Give a shout if you think I can help you some more.

QuiteLikely5 Wed 03-Jun-15 14:23:53

Have you thought about ringing SS disability team and asking for respite or payments towards childcar so you can have a break?

Unfortunately my friend who's son was severely affected by autism had to ring them and say if they refused to help she would bring her son to their office and leave him there.

They had previously fobbed her off and honestly she just couldn't cope.

There are great respite places for your son and your local SS team will have funding for these places.

You will have to fight hard to get them to listen but tell them you're at breaking point.

Fairylea Wed 03-Jun-15 14:24:29

Thank you for your kind words.

I've suggested to dh that he has some time off sick (with stress? Parental leave? I have no idea). At the moment he is literally telling me he is at work in tears because he's made another mistake and he's terrified he's going to get sacked. I've suggested he talk to his manager about what's going on at home and at the very least ask for some sympathy. But I'm not sure people are ever sympathetic. Some people are I guess.... We can't really afford for him to have time off but at the moment we are arguing all the time over everything mainly triggered by the stress of ds.

I will try and contact more people for help. I am so worried about ds because he seems petrified of "strangers" so I'm wary of getting more people involved but maybe I need to. We have no family support at all. There is no one to give us time off.

I will contact the children's disability services... or at least try to see if there is something near us (we are in the UK but quite rural).

The pre school he is going to start at in September has good links with a special needs school so they want to try him there with 1 to 1 first as it's only going to be 15 hours a week and then if he needs to they have mentioned transferring to the special needs school when he turns 4.

This is all so new to me. I feel like a fish out of water. He's napping at the moment.

Sorry if I've cross posted with others.

Fairylea Wed 03-Jun-15 14:29:28

Thank you so much for all the support and replies and ideas. So sorry to those who have gone through similar but thank you for sharing your experiences with me. It feels so isolating so much of the time, just to know others have lived it helps.

Owllady Wed 03-Jun-15 14:32:04

We all felt like a fish out of water fairy. It's normal - if that helps?

You'll get through this but it sounds like you need to both see your GP for stress. Tell them what is happening too as they might be able to help too.

CarersUK is a good organisation too that can help with lots of practical/emotional support for you and for siblings.

ouryve Wed 03-Jun-15 14:33:26

Fairy flowers

It is relentless, sometimes, isn't it? I do feel guilty, sometimes, when I can't cope with the boys on my own for whatever reason and DH has to dash away from work.

It might be worth looking out for a siblings group for your DD. This might be a starting point

bialystockandbloom Wed 03-Jun-15 14:37:32

Really hard. My ds was 3 when he was diagnosed (ASD) and it was an awful time - coming to terms with the fact that your child has this condition, along with the day-to-day living with it (especially with no support) is bloody hard.

Now the summer is coming, can you take him out as much as possible to parks or outdoor spaces where he can have lots of space (i.e. no need to interact with other children if he finds that difficult), swimming etc. Anything to jump around and burn off energy might help. Can you get a mini-trampoline for the garden?

Look up Contact a Family, if there's one in your area they have regular meet-ups in parks, adventure playgrounds etc, where he can do what he wants and you can meet other parents in similar situations. They also do organised activities.

If he likes pressing buttons etc (my ds did at that age - he also loved signs too btw!) try museums with children's spaces, they often have buttons just to press. Are you in London? Science museum is good for this - they also do autism-friendly early bird sessions.

Your local NAS group might have Early Bird workshops you can go on, even without a diagnosis.

It will get better, honestly. He'll start having support at school, you can also apply for a statement/EHCP (look into it now, he doesn't need a diagnosis yet to do so), his interests will widen with support. When my ds was 3 he could spend hours (literally) filling a bucket with water and tipping it over his head. I couldn't see a way out of this, but it did happen.

SvenandSven Wed 03-Jun-15 14:41:22

My ds is 10 and has autism. He is obsessed with signs. If he is ever able to drive (epilepsy) he knows all road signs! He loves maps too.
My biggest piece of advice would be to contact the national autistic society. They run early bird courses all over the uk. The one we went to was at our local special needs school.
The course is fantastic and really helps you to understand autism and how to help your child.
The support we have received from the ladies running the course has been invaluable.
My ds is now in a special school and is thriving there. He is in the autism base and has progressed so much and doing things I never thought he would.
I would seek out and use every resource available to you.

cestlavielife Wed 03-Jun-15 14:44:32

as others have said, it is hard with small child.
look ahead to september - things will improve when he is in school. you could ask for a full time place. sit down dh and tell him he HAS to speak to someone ask your gp or specialist hv for referral to someone to talk to together and/or separately. does your h have history of anxiety/depression? if yes he needs help soon. if no such hisotry then its good news you can both get help to address this as its a direct reaction to an "event".

(my exp got so worked up he attacked my son with ASD/SLD - but he ahd history of depressive episodes. with hindsight i should have kicked him to get more support....)

ask NAS to put you in touch with local group or nearby parents or try contact a family or or (they don't just do cp these days)

maybe dont try and go on a week's holiday to eg spain but do try a weekend away or few days with family if you can set up home from home routines. take ds out to local cafes so he gets used to the routines. first time you might just go in then out, then build up to going in sitting down having an ice cream etc.

there are places geared up eg

east dene isle of wight does a week for families with child with autism. email them ask which week it is they have grounds and swimming pool and you would be around families with similar kids....

Carrie5608 Wed 03-Jun-15 14:50:11

Fairy do you have a Surestart near you? I think you need to contact your health visitor for advice.


fanjoforthemammaries7850 Wed 03-Jun-15 14:52:05

Definitely ask for support and respite. You and dH need time together without the kids, ideally.

SoundingBored Wed 03-Jun-15 15:00:36

Hugs to you, OP.

My DS was diagnosed with autism at 5 yrs old. He is now 10. Its been a rocky road and has put enormous stress on my relationship with DH and our family as a whole.

I'd advise you to go back to your GP and say you need more help. I also found that I got some Paed and other specialist appointments brought forward by badgering people...ringing up and asking them to call me if a cancellation came up, saying I was struggling massively etc.

Get in touch with your local branch of NAS, Contact a Family, Mencap and the council (overwhelming I know!) and ask for info on any services in your area that can help.

Does your council have an early intervention autism service, for example?

I wouldnt worry about toddler groups etc at this point if your DS cant cope with them. My DS never could. Great that his school looks like they are supportive...but if I were you, I'd look into getting him a Statement/EHC plan for school asap.

I know it all seems daunting right now...and I can understand your concern at getting all sorts of different services and professionals involved with your boy...but it will pay off in the end.

Post on MN's SN chat boards, too. Theyre amazing for getting advice and support for all manner of SN-related things

SoundingBored Wed 03-Jun-15 15:03:08

I should also add...DH and I have family therapy with CAMHS fortnightly. Just us as a couple mostly, occasionally we bring DS and/or our other child. Its been really helpful as a space to vent all the feelings that come with an autism diagnosis and the difficulties DS (and we) have.

Our GP referred us when I went along and said we were really struggling. We got an appointment within 8 weeks.

silveracorn Wed 03-Jun-15 15:24:09

I'm so sorry you are having such a tough time.

But you've done so many things right, already. Have you any idea how impressive you sound? You've already managed to get a diagnosis and sort out 1-2-1 and SALT for when he starts school, and successfully applied for the correct benefits to ease your financial strain. Once he's at school you'll get a bigger break during the day to recharge your batteries. Given that you seem very good at applying for things your family needs, could you look into respite care? Would it be possible for you to go away for a day or two with DD while he stayed home with a carer in his familiar surroundings?

Please don't think this patronising but could you take a step back, a deep breath and give yourself some recognition for what you have achieved? Sounds like you don't ever give yourself a pat on the back for what you are doing right or well. You sound like a wonderful mum to be making sure your DD gets a fair share of attention. Redecorating her room, taking her out at weekends is lovely. It may be exhausting but you won't regret it, because she'll appreciate it when she looks back and you'll be glad long term that you didn't give up on some of the pleasures of family life.

DS2 has recently, at 12, been diagnosed with autism. Our lives, especially his, would have been easier if we'd known earlier, as he had zero support in his primary school. We didn't know about the autism because he had so many things wrong physically too. In and out of hospital. The best thing I ever did was accept it. Not wish it were different, not rail against the injustice, but think: this is what it is. What can I do to enjoy it more?

Given that you can't change the big things in the situation, can you change the small ones - such as your attitude to his nap? DS also had a two hour afternoon nap. But for me it was a life saver. A definite time each day when I could think my own thoughts. Could you decide to spend one of those hours on something indulgent for yourself? Reading or yoga DVD or a deep bath?

Please don't think I'm trivialising the strain you are under. I'm not suggesting any of this will turn things around. But tiny sources of pleasure and relaxation, sneaked wherever and whenever you can find them won't do any harm. they may help stop feelings of desperation from becoming overwhelming, that's all.

BettyCatKitten Wed 03-Jun-15 18:59:46

Definitely get in touch with the children with disabilities team at your LA and push for a social worker as they can sign post to help available. Plus when ds is a bit older you should be eligible for respite, but you need a social worker to access this.
I work with children with disabilities and understsnd how stressful it is for parents/families. You're doing a great jobflowers

Fairylea Wed 03-Jun-15 21:19:36

Thank you everyone. flowersflowers

I've spent the last hour or so googling all your suggestions and applying for as many things as I could! Feeling a little more optimistic reading some of your own stories and finding that actually once you've pointed me in the right direction (!) that there is help for us out there.

I've asked for an application pack from our local authority for access to the disabled children's services. The only thing I can see us falling down on is that because we are currently on the waiting list the only paperwork I have is health visitor assessments and the notes from that in order to support an application. I have a feeling I may need to wait until we see the paediatrician in August to get further on. But it's worth a try.

We do have a sure start centre which is at the school where ds is starting pre school at in September. Unfortunately they do not have any disabled or special groups and have just put us on the waiting list for our nearest facility which is 30 miles away (I guess that's something).

I told dd about the siblings group and forum and she's very enthusiastic and has signed up.

Ds is very restless tonight and has been up again with us downstairs since he went to bed at 7pm. Maybe I need to try and tackle reducing his nap. Or maybe he just isn't tired yet. Who knows. I wonder what tonight will have in store.

Thank you very much for your ideas and support.

cestlavielife Wed 03-Jun-15 21:28:40

If you gave the dla lether awarding high rate cate then send that to the disabled children's teM. You font need diagnosis yo get support. It's based on need and if you filled out dla form right ypu have all the info on needs and his care. Soask for assessment of his needs and your needs to be done now.

cestlavielife Wed 03-Jun-15 21:29:37

Sorry phone typing. Send the dla award letter to disabled children's team

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