Should I apply for DLA

[Blossomworld]

My son has no diagnosis, could still be a while. It’s becoming more and more likely that I’m going to lose my job and I’ll find it difficult to get a new one and not lose that too due to the amount of time I’m needing to have off at the moment.
I could put him in breakfast and after school club. But the reality is there will be days where he’s had a bad day and after school club will not be able to cope with him. I’m constantly late when he doesn’t want to go in the school gates on the morning. I have to pick him up if he gets excluded. We have appointments coming out of our ears. He’s starting a PRU two days a week meaning he has to get on a school bus that doesn’t pick him up until after the time I start work.

He does need more supervision when out as he is impulsive and struggles with emotions, so if he gets upset he will run away. But on the other hand if he’s somewhere like a playground, I can relax as hell usually be fine.
He can’t do many things that require fine motor skills. Needs much prompting, reminding and persuading to do things like get dressed.
I struggle to go to a shop with him.
There’s obviously loads more, but does it sound like there’s even a small chance I’d be eligible?

Yes, you should apply for DLA, you don't need a diagnosis. The Cerebra guide is helpful when completing the form.

Does DS have an EHCP? Are all the exclusions official, with paperwork.

About to apply for ehcp and he’s exclusions are official

Are the forms really as bad as people say?

I would apply but id get help from a disability charity to fill it in. Why do you think a diagnosis will take so long/?

Because there is a year long wait for an assessment

Yes apply! The form is long but the guidance notes are good. It's worth keeping a diary I think so you can see any adjustments you have made that now seem typical to you but aren't age appropriate (e.g., we have no rugs because DS would just pick them up and spin etc knocking over other stuff, we have to take his water bottle away quietly when he's finished a drink otherwise he'll just keep sucking in air). Write all these into the form, any extra supervision when out and about, any impulsive grabbing that makes shops etc difficult, any prompting that you have to do to accomplish daily life things like getting dressed, any extra sensory stuff you have to buy, etc. I did the form myself and it was OK but I took breaks, it is a bit depressing listing all the things your child struggles with bit it's worth it for the support.

The thing that probably takes the most amount of time, is the contestant prompting and reminding to get dressed, get in the bath ect. I have to remind him every 5 mins and it can take up to an hour. If I get firm with it it just causes a meltdown so drawn out gentle reminders are the easiest way.
I’m not sure how I would explain or document that?
Yesterday for example it took us well over an hour to leave the house, from the time I was ready to go, until he was. We both ended up in tears from it, because I got firm and switched the tv off in the end.

Say that he needs prompting every 5 mins but in a way that isn't perceived as a demand, so it can be very tricky. Sounds like my DS, who is asc with pda profile. We also have the demand avoidant info in the ehcp as it affects strategies for school too.

Yes I think probably pda. Had an autism assessment a few years ago and they said didn’t meet the threshold, but I’ve always thought, and still do think he has ASD. High functioning.
They’ve agreed to reassess but it’ll be a while.

If I just go in and say “right come on now. I’ve been waiting 15 mins, put your clothes on or I’ll switch the tv off” meltdown is inevitable. If I threaten with consequences, meltdown is inevitable. I have no option but to just wait as long as it takes. Not even sure what the issue with it is, I think it’s diverting attention away from what he’s doing. He’d happily sit inside all day if I let him and never get dressed.

How about saying 5 more mins of TV, then it's time for (insert fun activity here). That's what we try to do. So we'll say OK 5 more mins then we have to turn the TV off because its time to walk to the shop / go for a car drive etc. Make it about his choice. I take two outfits downstairs and let him choose which one. Then I'll say oh it's time to do xyz rather than do it now or I'll do this consequence. It sort of distances the demand from me with the task, if that makes sense? Tricky though!

Oh and lots of talking through what happens at set times so he 7s aware of what happens when and can predict it. E.g. we always eat lunch at 12 then go out somewhere after. Holidays I do a social story type thing for so we can talk about the routines etc. Oh qnd we got fobbed off with the asd traits thing too as he was too smiley apparently, reassessed a year later and was diagnosed!

I do try the times countdowns but it doesn’t work. He just gets so engrossed. He’s started watching you tubers on the tv which has made it worse as they’re not half hour long programmes.
I think I probably do need more rigid routines, as on school morning we have less difficulty getting out of the door, probably because he knows what’s happening at exact times. It’s still always last minute though.
Weekends vary so much depending on what we’re doing, it’s tricky to have a routine. Holidays are always hard. Even if we’re going somewhere fun, it’s hard to get
Him ready and out, easier if he knows we have a timed ticket and need to be somewhere at a specific time. But just going to the park, can take forever.

On the way home just now, needed to go to the shop. Luckily we have 4 little shops all within a few mins of home, but in different directions.
We were almost passing shop b, so I suggested going in there (but we normally go to shop A, and shop B would involve a slightly different route, but be quicker) he said no he wants to go to the normal shop.
So off we go to shop A, doesn’t have what I need. So begrudgingly on to shop C (2mins away) also doesn’t have what we need.
He then can’t cope, refuses to go to shop C or D. Sits on the floor, shouts at me for a while. Tells me he can’t walk anymore his legs are aching (even though it’s not much further to go) it’s too stressful ect ect.
We do eventually go but surely not everyone with 8 year olds experiences this. I dread needing to go to the shop.

I wouldn't even try more than one shop tbh because we would have similar.

Yeah I wouldn’t normally but I needed the ingredient for dinner. I feel so restricted sometimes , single parent so I have no option but to bring him. I generally get my Mum to have him if I need to go proper shopping.

That's really hard if you're solo parenting as well. Hugs!

Would an SN buggy help in such circumstances? DS could hop in and out as needed. DS1 can sometimes cope with more if he can hide in his SN buggy, and when he does have a meltdown we can put him in the buggy and go somewhere quieter.