How do you cope if you never get a break from your dcs?

[SadieChanges]

I have ds 22 months , having the ADOS assessment in a couple of months. He is non verbal and understands little , exhibits lots of asd behaviours. I also have dd nearly 6 months. My dh works 7am- 6pm. Dcs up at 5.30-6.30 every day.

I'm still bf dd so she wakes quite a lot in the night and needs feeding as not a great sleeper . I have no support here no family or close friends . The groups I take ds to are becoming more and more difficult to manage him.

He starts preschool in November , god knows how that will work out. Anyway I'm becoming increasingly isolated. I'm limited to what I can do with friends , eg there might be a kids festival but he will run off everywhere or get really upset and overwhelmed when he is supposed to be having fun. I spend the vast majority of my time alone with them. I know it's silly but I thought he would talk by now and it makes me so sad and I worry if he ever will.

Family downplay it and think he has no major problems. So even though they are far away it's hard to discuss anyway.

How can I cope better on my own , sometimes I get cross at ds for his squeaks and screams if it wakes dd for example but I know he doesn't understand.

I just feel I have so much to do to try and help him and I don't know where to start. I never get any time away and sometimes I feel really overwhelmed with it all.

I go to work, honestly that ahs always been my respite. I struggled to get apprppriate childcare for ds2 when I first returned to work & did wonder if it was really worth it, but it has kept me sane.

Now they are both at school it is alot easier. However you find respite it is essential if you are to be parent & carer 24/7 for years to come.

are you able to pay for a childminder, even for a couple of hours a week?
Do you claim DLA?

The pre school years are the worst, it does get easier. Its hard anyway having two that close together.

You claim DLA - look at Cerebra guide and perhaps use that to buy in help.

You may be entitled to help from disabled childrens team of social services - you can ask for a carers assessment for you as well as one of your child. See contact a family website for info on assessments. You tell them you have no support and need a break from caring. There will be no services for that age group so you ask for direct payments to buy in some help. If your HV is useful talk to them.

Give up the groups which don't work, you can't talk to the other parents anyway and feeling isolated in a room while all the other parents are enjoying their coffee just makes it worse. If possible see friends you do have without their children eg a chick flick night out.

You have to get your DH to do more and give you a proper break e.g. you get half a day off at the weekend totally child free and do stuff just for yourself even if its just a nice bath or a sleep. Is there any way he can reduce his hours? DH and I both work part-time and care part-time its not the financially sensible option but its saved our sanity.

You may have Homestart in your area and can ask for support.

Look for any support groups in your area for carers / parents of children with extra needs. Talking to others in the same boat helps.

Sometimes local colleges do placements for nursery nurses with families and you may be able to offer a placement and gain an extra pair of hands that way.

Just keep plugging away with your family. The penny will drop eventually. I found I had to be a lot more direct and say if their attitude was completely unhelpful or undermining of DS's difficulties.

Perhaps plan for your DD to go to nursery sooner than might otherwise so you have some time to yourself as well as with each child individually?

Hopefully you will be able to get out more once preschool starts