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

[Fairylea]

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 :( .

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.

Glad to hear you have a few more things to try. very good to hear your DH has been honest with work. I'm sure they'll be more sympathetic. Must be so hard for all of you.

In public situations, would a game console help? Something simple that he can focus on, which might block out the rest of the world a bit for him, and it might buy you a bit of time and peace?

Fairylea have you heard of Makaton it is a picture language that can be used for communication.

Two things jump out at me from your posts firstly that your Ds is frustrated with his inability to communicate with you. The other is that he is overwhelmed by sensory input when out and about. Have you tried headphones with soothing music.

Have you any input from speech and language or from occupational therapist,

Also try a pop up tent for his own space at home.
Once you get a diagnosis you will get a lot more support.

So pleased you are looking into respite op.

The respite places really are great and offer a lot of enjoyment.

Hi Fairy
One step/one day at a time. Good luck getting some respite care sorted.

Sorry only skimmed a lot of the replies so forgive me if I repeat anything. My Ds2 has special needs, not autism, but some similarities and I know how stressful it is especially when you are going through the diagnosis stage. I think it is also hard for dads when their child is going through the diagnosis and sometimes they react differently and it can put strain on your relationship. It really is the most difficult time; it does get easier eventually but it is a lot to come to terms with. And the day to day coping with a 3 year old is hard anyway before any special needs come into it.

Have you thought about Homestart, they may be able to provide you with a volunteer for a couple of hours a week, just to give you a break or some support in whatever form you need it. I am a Homestart volunteer and I know this is the sort of thing we would support.

I'm not entirely clear if you have applied for social services to do a full assessment - they should be able to identify areas of needs - like your daughter will need some time just with you, your son needs access to things he can enjoy etc. If you haven't done this I would do, as they can provide funding and also access to things like Holiday Clubs, Saturday Clubs and if you are on high rate DLA you should be entitled to direct payments which you could use to get someone to come in and help you with your son. Respite may also be a result of this, but you may need less overnight respite if you can get regular help / respite each week.

Portage is another possibility - someone comes into your home weekly to help you with you with teaching and providing activities for your son, helping him to do things etc. I think you can refer yourself directly Portage.

I would be quite surprised if there are no special needs groups at all in your area, but it can be hard to find them. Portage, social worker, Homestart may all know of some. We used to go to Opportunity Group which I think is all over the country - try googling Opportunity Group with your nearest town or county name and see if anything comes up. The other thing is to see if there are any Facebook groups for your area - that at least helps you to stay in touch with other parents and they will have ideas and support. Sometimes local soft plays run a special needs session once a month, which is a chance to meet other parents in a non-judgemental atmosphere.

It sounds like you are doing really well and being very proactive already, and you are doing brilliantly explaining it all to your daughter. She will become a world authority before long! Special needs siblings are often really lovely caring people because they have learned to be non-judgemental and patient and understanding.

Sorry for the long post, I hope some of it may help; my heart goes out to you because it is a really difficult time.

This may be of interest too.