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'm so sorry that I can't offer any practical advice, but just wanted to offer a hand hold / gin / hug / whatever. I have a 3yo with ASD and severe speech delay; taking him out on my own is fucking hard enough so I cannot imagine how impossible it must be with twins. And also being stuck in the house must be really, really tough too.

It sounds like you're doing amazingly and it's great that you've got the support you have in place already. Fingers crossed someone on here can advise re some other services you could try and access to make life a little bit easier.

Sorry just saw your private SALT comment; is there a reason you need to go private? Only asking as it sounds like freeing up your DLA from that would help you a bit.

Do you have a double pram that you can strap them in safely? Some brands have bigger seats than others. Would you then be able to safely take them for a walk somewhere?

I suggest applying to family fund for assistance with the garden. Their grants are limited but definitely worth giving it.

They each get three sessions of SALT on the NHS and then back to the bottom of the list until another block is available. Just enough to start getting somewhere and then back to just what I can do on my own (not easy with two of them, at completely different levels)

It’s £65 an hour each, couldn’t afford it but now they are both getting MRC we can either do an hour each a week with me paying the excess or an hour each a fortnight with a bit of DLA left over for all the hundreds of other things I use it for. I’ve spent the last few weeks making PECS and choices cards myself (complete with rounded corners ) which has saved me some money but is also quite soul destroying!

They hate being in a buggy, they may tolerate it for a few minutes but then the screeching and escape acts begin. Can’t even get to the end of the road!

We are getting quotes for the garden so we can apply to Family Fund, every little helps but it’s going to be very expensive it seems. Awesome!

Just sick of the cabin fever and their boredom, which I know isn’t helping them (or my mental health). I do what I can to make things interesting for them but it’s really hard.

Request a disability needs assessment for both children and a carer's assessment for yourself from your council's disability social care team.

www.autism.org.uk/about/benefits-care/community-care/children/england.aspx

Thank you Wotsit, that’s exactly the sort of thing I was looking for.

I know they did an early help assessment thingie a while ago, and we are having a TAF next month but I don’t think they’ve done a CAF for that? HV mentioned yesterday that my EHA has disappeared so it may need to be repeated.

I’ll be honest, I am anxious about involving social services / children’s services in our lives - even though I don’t believe some of the stuff I see online, I do worry a little about it. Read about one woman with two kids with ASD who it was decided were at risk of harm from each other which must have been an horrific thing to deal with, split their family up etc.

Most people I know simply don’t understand why I can’t just take them out - before they were diagnosed and when they were about 18 months I asked on the local twin group where they took their twins of that age and had multiple people telling me to take them to the beach! That’s hard enough with DH, by myself it would be impossible.

I just feel like I’m letting them down so much as they really need to be getting out more.

When you say other health issues, are any of them life limiting? A friend of mine has a child with cerebral palsy and the local children's hospice send someone experienced out once a week for respite, which is a lifeline.

www.caudwellchildren.com/

They might be able to help fund something you need.
Hope you get some help- life sounds very tough.

Whereabouts in the country are you? I know my local Mencap has a scheme where volunteers accompany kids to groups like brownies, or sports clubs. They might be able to help. There.is also an organisation called Safe Families which might help.
Rather than SALT could you pay someone for 2-3 hours a week to accompany you when you go out?

My situation was different as mine aren't twins and dd2 is nt (but was very hyper, still is) but I found the double pushchair was my friend, I used additional harnesses from the reins to ensure compliance but they liked being out so no climbing out issues. We went everywhere, I even flew single handed because even though dd didn't have speech she understood everything. It was very overwhelming at times and having two kids going in different directions is hard whether they have asd or not, at 2-3 all twin parents find it hard but if the environment is safe (closed room, child proofed) and there's other people and kids there it is safe. The park is harder, I never ventured there alone unless I was meeting friends. I know it's hard but it's partly having confidence, start with just walks but consider the group again because the more you do it the easier it gets. (Dd learned to talk around 4, excelled at school and is at university, not bad considering I was told that she would probably never talk at 3)

Could you hire a mothers help for a few hours at a time to help you take them out? Eg a local mum who wants to do a few hours work in school hours might be ideal? If you advertise on your local Facebook group you could maybe find somebody.

Unfortunately my two understand very little - possibly the odd single word but that’s all. Hard to say really as they don’t react as you’d expect even if they understand. This is why I really want to pursue private SALT as that is the thing impacting them most at present.

Obviously we’ve used a double buggy from birth but about six months ago they decided they hated it and now we rarely use it - even got a different type to see it it would help (it didn’t). We’ve tried inline, side by side, parent facing, facing out, facing each other... none work these days. And if they were willing to go in it, I can’t walk to anything except a park, which we can’t use safely. At least for the time being going out needs another person so I guess I’m probably going to need to pay someone.

Fortunately not life-limiting at all (thank goodness) - there’ve been concerns about associated conditions that are life threatening which could still be an issue but luckily not at present.

Do they have an EHCP?

We are just starting the process for both of them now - I didn’t realise that some of the specialist schools locally start from 3, so we are just starting.

Just found out DT1’s got his DLA for nearly six years which is a huge relief, DT2 got it for two years despite having greater care needs 🤷‍♀️

You can have speech and language therapy included as part of the EHCP, make sure it is included in Section F and then the Local Authority would be responsible for funding it. That would free up some of your money to pay for a couple of hours of support maybe?

Definitely, thank you - I will make a note of this :)

Probably a longshot, but could you approach Remap to see whether they could customise the buggy in some way that would make it appealling to the twins?

Do they like iPads/ tablets? For the sake of my Dan it’s I might give them iPad as reward for getting in buggy, then at least you could leave the house for some fresh air for half an hour whilst they zone out with Thomas.

Have you done the pecs course? If you attended that (it’s 2 days, I know child care would be hard) but you could do so much if you had that knowledge. It might save you some salt- you could have bi- monthly check ins with sp therapist and do so much yourself (assuming you get past phase 2, otherwise you still need 2 ppl).
Are there any unis near you? Might be worth advertising on psychology/ education/ type places- a student might want or need some experience and help out for pocket (beer) money?

Hey,

Just found out DT1’s got his DLA for nearly six years which is a huge relief, DT2 got it for two years despite having greater care needs

It's worth appealing the decision for DT2.

Ugh posted too soon! Just wanted to say hi, my twins also turn 3 later this year (October). Mine are neurotypical so I can only relate so some extent, but wanted to say this: I was offered a free (!!!) live in Norland Nanny trainee for a limited time when my twins arrived (they were very premature and I had an older child too). Depending on where you live that might be a temporary solution?

Other than that I would try as much as you can to maintain your independence, and find coping mechanisms for doing things by yourself. For example I use a sling (double or single) a lot. This means that if I’m somewhere and they both kick off, I can quickly and safely carry them both out (one in sling, one under my arm).

I’m also puzzled as to why you couldn’t attend the local SN group by yourself? What exactly is unsafe about it? Personally I find as long as I can GET my three somewhere (car, pram or sling) and that place is safe (safe playgroup or fenced in playground), then I’m fine.

I appreciate mine don’t have SEN and so it’s probanly very difficult, but if We knew more about what makes it hard/unsafe to take them out by yourself, then you would get more helpful advice!:-)

Big hug and massive goblet of gin from one toddler twin mum to another🤜

Eek sorry really hope my post doesn’t sound massively patronising. I was just wondering what the specific challenges are (behaviour? Medical? Transport? Visual impairment?) when you take them out and about. Also are you on “gentle parenting twins and triplets UK”? Not as lentil-weavy as it sounds and full of nice people helping eachother out with advice, etc. Plus you might meet some more nice local twin mums:-)