Practical / logistical help with two disabled children?

[SinkGirl]

My twins are 3 in September, both have ASD, one has other health issues and a seemingly mild (although we can’t be sure yet) visual impairment.

We have a Homestart volunteer starting next week and I cannot wait because at the moment I can’t take them out of the house alone. It’s not safe. At present they go to nursery 3 mornings a week, the rest of the time Monday-Friday we are in indoors (can’t even take them into the garden, it’s not safe for them, we are saving up to have it levelled and excavated but it’s an enormous job)

Portage helped me take them to a group set up for disabled kids yesterday and commented that it wouldn’t physically be possible for me to take them alone. Saw community Paeds nurse today with HV and they agreed, I can’t take them out alone safely.

Is there any help I can access at all with this, especially once my six months of weekly Homestart visits is over? Not being able to leave the house most of the time is really soul destroying.

One of them has had DLA for about six months and the other has just been granted but I really need to use that money towards private SALT as they desperately need that more than anything else.

I expect any help is something we will have to pay for, but if anyone has any ideas then please let me know :)

I’ve got some lovely local twin mum friends but all NT kids and it’s gotten much harder to meet up as they’ve gotten bigger.

Thanks for all the suggestions, will have a look. There’s a PECS course here this month, going to see if DH can hold the fort while I go.

I’m also puzzled as to why you couldn’t attend the local SN group by yourself?

Okay, I will try and give a run down!

so we arrived (DH gave us a lift - I don’t drive, am working on it!). Had to get them from the car into the building (one set of automatic doors into a small reception area then wait until let through to the school). Every time anyone approached, they both tried to escape but because I had help we kept them contained. They won’t go in a sling (sensory issues I’d guess but even if they could, my back is damaged after 7 months of two-hourly breast pumping and it has never recovered).

Then up a double staircase to the first room - I can’t get them both up the stairs at the same time. They can climb stairs, but often they’ll just go limp and refuse so say I’m carrying one and holding the others hand, halfway up they’ll just go limp and try to throw themself down the stairs.

Then take shoes off (means focusing on one while the other escapes and tries to enter rooms, climb furniture etc). Then go into first room - a large music room. One immediately climbs an amplifier to get to a window sill so he can see the cars in the car park, while the other is putting every musical instrument he can find in his mouth and emptying trays all over the floor. Rest of the kids sit down for songs and circle time to while mine are at opposite sides of the room, one climbing the shelves, the other trying to escape. One decides to join in with a game involving a big bit of Lycra so I need to help him, which leaves the other free to roam and climb without an extra pair of hands.

After this I need to gather them both and all our stuff, and head to the soft play room. Not so bad in there as it’s enclosed but one keeps trying to get out of the room while the other climbs a structure and then cries because he can’t get down (struggles with depth perception). Spend some time trying to calm him down which means the other can be getting up to mischief!

Then have to get them both downstairs (even worse than going upstairs!) to a class room for snack time. One keeps trying to nick food from others (not good - allergies) while the other goes to the outside play area attached to the class room. Ask our lovely portage worker to monitor his snatching hands while I pop outside. By the time I get out there he’s picked at the tarmac and has a mouthful of it. He’s also managed to find and chew on a piece of gum (the woman running it was shocked as it’s banned at the school!)

Then I have to get them back out, through the glass double automatic doors (which they both run into while waiting for the doors to be opened)...

I’m sure there was more but even with another pair of hands it was super stressful!

I have been paying for private speech therapy since my ASD DD turned 2 (she has now just turned 4). The NHS resources are so scarce and early intervention is so crucial - I totally get why you want to spend the DLA on private speech therapy.

We've been declined DLA though!

Oh bless you. I feel awful that so many are refused when we’ve had no difficulty getting it, we did have reams of evidence but I know that doesn’t always mean anything.

Can I help at all? I’m happy to help with the forms if you’re applying again!

I feel like it’s the best thing I can do right now with the money and could mean a huge difference in if/when they start talking or start using PECS properly. Sadly the local course is next week and I can’t make it and don’t know when the next will be so o think I will pay for some private SALT at least until it’s more established or I can get on to a course. Very difficult to do though even when DH is around with twins with totally different needs and levels.

Is there a specialist nursery they can attend? Or a school nursery with additional support? Is there a local autism group you can contact for advice?

To give them chance to burn off some energy do you have a sure start locally? They often have sensory rooms or very small soft play areas you can hire for a very small fee. They’re usually designed for babies and toddlers so would hopefully be safe and escape proof. Appreciate getting them there might not be easy, but can the portage worker assist?

I used to put 2 pairs of reins on my Houdini (( Houdini harnesses from fledglings )) then double strap him into his pushchair.

Have you looked at getting a double major buggy op (( large, special needs pushchair )) ?? It sounds like you'd find it useful.

I dont have SN twins but did have 2 with SN and only a 2 year gap. It was damn hard work. Especially my youngest who when he wasn't escaping would be plotting ways to escape. I'm amazed he survived intact. 😳😳😳

I only have 1 autistic child (and one NT) so this may be useless advice but we have got on best with small mainstream stuff. It sounds like there was tonnes of stuff to distract your children at that playgroup. A little music class could be a village hall with one door, flat entry, and you could wheel the buggy into the back of the hall. A circle of parents and babies on mats plus some open space to run about safely, not piles of trays, amplifiers and shelves to climb. The teacher or another parent with a biddable child taking a twin if they want to go in different directions. I also found a soft play session at the local leisure centre quite good - limited area, flat, good visibility over the whole area though maybe not quite yet for you. It is all about the very specific minutiae of different activities. One music class was way too loud and just horrific, another felt like an oasis and kept me sane. To anyone else they were probably indistinguishable but to me they were darkness and light. A baby signing class was also good but it's all about the individual set up, not the "thing" itself.

Is the buggy thing definitely the buggy or could it be coats, hats, liner, a route they don't like? I only figured out years later that my son hates normal waterproof coats (has to be Hatley apparently !) which is why it was so hard to get him out of the house. It's hard to think round all the angles. Could you use reins to get them across a carpark?

Honestly I would throw everything you can at learning to drive. Just more choice of places to go is life altering when a lot of options don't work for you. Meeting up with one friend at home was also brilliant for me, but it must be very hard to kick off those friendships if you can't get out to meet people.

I know most of the above it probably useless but didn't want to read and run. Sympathy, it does sound really difficult. It will come towards you, albeit in baby steps.

Could you swap the nursery days so one goes at once and you have one at home

Could you ask at their nursery if any of the staff would be willing to come out with you if you paid them? Assistants are paid so little they might be grateful of the chance to earn some extra money and it would be someone familiar to the twins.

We have talked about swapping one of the mornings for one of them, but it’s difficult because of the other things they have to do like portage, hospital appointments, etc. They’ve only just started the third morning a few weeks ago and they’re yet to actually do three thanks to illness and appointments (thanks to the fact they put everything in their mouths we’ve been sick on rotation constantly since January).

I brought up a larger double buggy with their paed today as she saw one kicking the other in the face, and him eating the others shoe... she said I should have a chat with wheelchair services so I will do that.

We are just started the EHCP process - there are a couple of specialist ASD early years settings locally that they could access if they get the EHCP which I think they should. Won’t be until next academic year though obviously, and that’s only if they have space.

At the moment I can’t wrangle them both on reins - we are still getting them used to reins with 1-1, which I’ll get the homestart volunteer to help me with. They’re fine on them usually with one each, but then they’ll randomly insist on being carried or start planking.

When they were smaller we would go to baby and toddler groups locally often but it’s just gotten more and more difficult. The nearest children’s centre (walking distance) has stopped doing any toddler groups. Last mainstream group we went to was a musical one (DT2 loves music). Walked them there with them in the buggy (few months ago now), they completely ignored everyone and everything that was going on, one managed to escape the hall, the other was picking up every bit of dirt off the floor and eating it and getting very upset when I tried to stop him. One mum gave me such awful looks that I hadn’t been to a group since.

Went to the beach with DH and the boys a few weeks ago, had them on reins while walking from the car to the playground bit - DT2 managed to pick up a dessicated dog poo and bite it in half.

I’m just exhausted to be honest. They are absolutely wonderful lovely boys, but I am so rundown after two and a half years of it all, and especially the constant bugs this year. Need to try and use some of their nursery mornings to recharge for a few weeks as I’m struggling to keep going right now

Hoping with a bit more rest plus the homestart help for a couple of hours a week, I’ll feel more able to push on throughz right now it feels impossible to do anything.

Took them to a joint hospital appointment today and once we were in the room it was fine as it was them, me and two doctors. But the waiting room beforehand was absolutely hideous and even in the child development unit I was getting evils from people wondering why my children don’t listen to me and run circles around me (quite literally - they’re not manipulative, they just love running in circles!). Had them in the double buggy but DT1 was so upset I had to let him out.

I need two more arms and a better back I think!

Could you ask at their nursery if any of the staff would be willing to come out with you if you paid them?

Yes, I’m definitely going to ask a couple of them, but I think the ones I know well are full time (was going to ask about babysitting in the evenings occasionally as DH’s 40th, our anniversary and my birthday are all coming up and it would be amazing to go out for dinner). I will ask though and see. The boys are generally okay with new people (in small groups anyway) but they love the nursery staff so much.

What about getting in touch with your local college who do child care courses. See if anyone needs any work experience with sen.

I would up their nursery attendence,.....use the DLA for that if necessarylook at your borough and sirrounding boroughs to ses if there is specialist provision that starts from 2- or see if there is a local play group that has sessions you can pay for ....unfortunately it is just chucking cash but it may help....
your portage person maybe able to help - in our area there is a drop off play session for young sen but it is referral only...
have you looked at your Local authority Local offer that may list services....