Financial implications of having child with sn- we are struggling

[redhappy]

Not expecting any miracle here, but maybe some inspiration.

Ds as been referred for asd. Still in the long process awaiting diagnosis. I was working part time, he was really struggling with childcare, becoming more and more aggressive, very little progression re. speech etc. From what I can gather, it's a quite a typical experience of placing a cild like mine in a setting.

So, I cut down my hours. I work 4 hours on a saturday now. To be honest, I'm not sure we're actually any worse off, as our tax credits have gone up obviously, and we're no longer paying out for childcare.

However, we just don't have enough money. We're getting deeper and deeper into debt and I can't see a way out.

There must be lots of oters in this situation, what do you do?

I don't feel like I can get a job and put him in a nursery when it is so obviously damaging to ds. But if I can't do nothing.

Dp is not coping with the stress, if we don't get some more money coming in we're going to split up.

How do you all manage it? Seriously, is there something really obvious I'm missing here?

You need to apply for DLA. If you are only working 4 hours per week you can also apply for carers allowance. If you receive DLA you can also get the disabled child element in child tax credits depending on your income.

He's not 'bad' enough for dla now I'm at home. Which is great, he's doing so well now he is not stressed out all the time. I did have dla forms, filled them out, when I was ready to send them realised nothing on there is true anymore.

Then today when I picked him up he was distressed because his dad was picking us up and we had to walk a different way. Sounds silly, but I know that if he stays at that level of distress it has a snowball effect.

Yes, definitely apply for DLA. We were struggling as well, but much better now, as it also bumps up you child tax credits. If you qualify for housing benefits, that will change as well if you get DLA. If you call and get the claim packet sent to you and turn it in within the time limit(6 wks?) then they may backdate it to the date you asked for the packet.

But I've got nothing to put on there?!

Sorry for being so negative, but it just seems a ridiculous situation. If I work he becomes severe enough to qualify, when I'm at ome that helps him enough that there's no basis on which to apply.

I have got forms for housing benefit here, need to fill those in today.

But that's not the point redhappy. The point is that you are home and caring for him. You need to look at it as "what do I do differently to provide for his care than a typical child of his age with no difficulties?" THAT's what you provide and shows his care level.

DS2 is a happy little boy, and we can minimise the stress he has to work through at home as well. But we also have to present certain foods certain ways, provide specific clothing and help him get dressed, help with his personal care (bathing, brushing teeth, brushing hair), monitor him all day as he gets in to anything and everything with no sense of danger. He cannot be outside without someone literally holding on to him or he will run. He's really a lot of work, but obviously as we have adapted our lives and schedules around it, it keeps his frustration level down to some degree. If he was treated as any typical 4yo, everything would come screeching to a halt, he'd either be injured or lost, and he wouldn't be able to do any personal care by himself. Often parents don't stop to think of what level of care they are providing because they are so used to providing it, if you see what I mean.

Read the cerebra guide about filling out DLA, as it will give loads of information.

I have the cerebra guide. He is getting better in lots of respects. Sometimes I can let go of his hand when we are walking (quiet road, route he already knows) so I spose I see that progress and think he's fine.

Is there anywhere else I can get help with the form? I just don't know what to put on there, can't see the wood for the trees.

Also, we haven't got much in the way of paperwork since he hasn't been diagnosed yet and we are due to start the CASBAT assessment soon.

Thanks for taking the time to reply, I really appreciate it.

Our DS2 hasn't been technically diagnosed yet either, but they're working within a general idea of what they think is the problem for both the DLA as well as the statement that we just applied for.

www.autismberkshire.org.uk/Files/Documents/WEB%20DLA%20Booklet%20-%20final%20new%20logo.pdf

that one helped me quite a bit when filling out the DLA form as well, although keep in mind it's from 2009, but a lot of it is still very helpful.

Perhaps if you sit down and write out all the care you do for him, even if it seems small, for basically 24 hours. And cerebra (as well as most others) advise you to look at bad days, not just good ones. Once you've made that list, think about what would happen if you weren't there to do each and every one of those things... what would happen? Think about why he didn't like the childcare - what was upsetting him - and what you do at home that makes it different for him that he can relax and feel okay. I honestly did not realise how much we actually provide in a "care" capacity for DS2 until we wrote it all out and compared it to a "typical" 4yo! Because it's all stuff you're just used to doing.

Hi redhappy I had exact same situation so I took voluntary redundancy and finish work in a weeks time.we had very ba regression with dd2 at nursery so put her to childminder and she improves however she needs me at home to take her to various appointments etc so I stopped work. I did dla forms an completed them when she was at her worst and getting up about ten times a night! Dd only 19 months old so we don't qualify for mobility component. I put on form things like dd screams in shops, get very stressed in busy places, hates doctors waiting rooms, becomes physically anxious and starts sweating etc, can't handle other kids touching her, gets 'stuck' on certain activities, has sensory issues, dislikes bath time and nappy change and various other bits. And we got letter other day giving us high rate care. On form there's a bit you can get statement from someone who knows your child we got child development centre to do it which I think helped and we sent off reports from centre and paed letter. We dot have a diagnosis of anything yet so was sure we would be declined. If you ask CAB they can help you do forma

We're working on getting DS2 to walk from the car to the front door of our house without us having to hold on to him (perhaps 10-15 ft in distance), and we're seeing some improvement in that he's not bolting right now. But.... I know for a fact that if I was distracted or didn't keep him constantly moving and focused, he'd take off and we'd be back at square one. So while it's a bit of progress, it still requires constant supervision and encouragement from me.

Sorry forgot to mention that I also put on form that she had to be removed from nursery due to distress it caused her. Wen giving examples on form use phrases like 'compared to other children his age......' and 'several times a day .....' as it give thematic clear picture that he needs more help than other children. It's all in the wording. As I write this dd2 is turning my freezer on/off/on/off despite being told no even little things like that you should note down as it shows how much attention/demanding they can be

how old is your ds, red?

Triggles is right - it is npt so much about how "severe" your ds' needs are, but how much more help he needs (whehter direct hands on help, time spent in working on a skill, prompts from you - the extra time taken walking home when you went the "wrong" way, for eg, and the amount of support he needed to do that) in relation to an NT child the same age.

what is he like getting dressed? time wise and support wise.

what about eating?

if he deteriorates so much in a setting - what are you doing differently that means he doesn't in your care? the setting has the "right" child:adult ratio for support for his age, yet he is not coping with this. so yuo put in extra time and effort, and he improves - this time and effort is the difference between him and NT (iyswim)

FWIW, I can walk along the road without holding dd1's hand now. she has severe ASD. but she is 6. I have been able to walk along the road without holding dd2's hand since she was 2, becuase she didn't need the same level of support.

you can apply as they are saying for dla use the guide you are entitled as for eg you know hes better with you than anyone else , how is he in comunication ie dont cross the road if he sees someone he knows the otherside like nanny would he run out how is he with dressing? and personal care? understanding stranger danger the fact you have HAD to give up work to look after him more means he does have needs different to a NT child his age i originally got welfare rights to help me fill in the first one i did (now amalgamated with CAB) they were very helpful and i got it first time no appeal or anything, next make sure your getting all your child tax credits there are also a lot of charities that will help with getting anything you feel you need to make his life easier also if you do get the HR mobility componant you can get a car from motobility and that payes for car,tyres, repairs ,insurance,green flag cover, tax, everything bar the petrol HTH

oh, and when you fill out the DLA forms - use the very worst day possible as your guide. What is your ds (not) capable of? when at his worst, what do you have to do? highlight just how much help your ds needs at times - always always use the worst case scenario as your guide.

e is 4, 5 in September, so we don't qualify for mobility is that right? Tbh he has got better in that respect anyway. I still have to keep tight hold of his hand though, and his current obssession is letters so we have to read every street sign we pass.

Refusing to get himself dressed at the moment. He can do it though. He is cooperative, but wont take anything off himself.

He attends nusrsery school now. It's attached to a school, he does 9-12 every mornign. I gave up work so he could go there basically.

His teacher used to be a SALT at a school specifically for children with autism. Also, the sn nursery provision for our la runs from there, he managed to get a place (only 8 places!) and goes there 2 aqfternoons a week too.

He is fine there, although I know they have to make allowances/put extra things in place for him. And of course, they know what they are doing, what they might expect from him, how best to help him.

At his previous nursery he sat on a computer ALL DAY and didn't talk to anyone!

He does'nt generally like strangers, very unsettled if anyone new comes to the house etc.

I think I need to have a cat with his teacher really. Hopefully she can give me copies of some of the paperwork on him which I can use as a starting point. Good idea about just getting anything I can think of on paper.

I am feeling a bit more positive now, thankyou

He will qualify for low rate mobility so fill the whole form in they can get mobility from aged 3

Ok, so should I get CAB to help me? Do they really know what they're doing?

I will give them a ring now to make an appointment, then focus on getting the information together and speaking to his teacher too

The thing is to look at all his care and compare it to a typical 4yo.

• dressing
• eating, feeding himself
• toileting, brushing teeth and hair, bathing, washing hair
• communication needs

...does he need assistance? supervision? constant encouragement to stay on task? does he need to physically be brought back to the table regularly at mealtimes or brought back to his room to be changed? ... do you need to help him understand when others are talking to him or when he talks to others? what's his comprehension like? does he understand instructions or do you have to break them down into simple terms and give them out one by one?... does he require constant supervision no matter where you are (in house, out and about) or need repeated reminders of rules and encouragement to stay within those rules? does he unknowingly (or knowingly for that matter) put himself in dangerous situations such as climbing in the house where he might fall or touching things that might be dangerous (like sockets, electrical items, water, cooker)?

There are sooooo many things that a 4yo should be able to do right now (and be able to resist doing that our DS2 simply can't. We do so much of his care automatically because we've done it for years. It was such a shock to see how much it really was when we wrote it all out.

Do you have a carers resource as they help with forms. Also talk to parents with typical children the same age and you will realise you do loads more. It's just become your normal so you don't notice.

Yes it must be true I do more. The mums I speak to at the school have children with similar issues there, so not a relevant comparison, and we try to focus about being positive about what they can do. So it all adds up to a kind of denial I think about how hard it really is.

The forms seemed to be focused on asking what do I need money for, asit has to be his money. So just to say I need the money so I can pay the bills isn't going to work.

Any suggestions for that part? I don't drive, so I did say I needed to pay transport costs tp take him to appointments. Possibly I need to research activities that will be beneficial for him that I don't even consider at the moment since the money just isn't available.

I'm not sure what form you're looking at then. As the DLA forms ask you what care the child needs, what care you provide, what would happen if he didn't get that care, and how that differs from a typical child that age. I don't recall anywhere that it even asks about money.

It was the dla forms.

I remember there being a section asking what activities, therapy etc does he need to attend that he wont be able to if I don't have the dla money. According to the cerebra guide, it includes things like cinema, cubscouts.

Anyway, I will have the pleasure of going over it all again soon!

I remember that bit. For Beaver Scouts etc, you could make a case that he would need 1 to 1 help to be able to attend. Perhaps swimming lessons would be a good point as lots of SEN children struggle in swimming classes and need individual lessons that are expensive. Swimming is a life skill that all children need.

Oh, okay. I'd have to look back at that because I don't even remember filling that out. (probably blocked out the trauma )

But yes, scouts, 1:1 swimming lessons, riding for the disabled, cinema, things like that.