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Here are some suggested organisations that offer expert advice on SN.

where do we go after we get a working dx?

(24 Posts)
eandz Tue 07-Jun-11 09:12:44

Hello Ladies,

As you may or may not remember our darling ds (2.7) was given a working dx of ASD on the 20th of last month. We understand that it means our son has autism. We also know now that no matter where he is on the spectrum we should never fail in trying to help him achieve more+better since ASD doesn't mean he doesn't have potential. We are happy to look through and try anything and everything. PECs, PEACH (end of this month+next month). We are also about to sign up with ABA tutor finder (does anyone have experience of using them/finding a good ABA system that works for them?) We met and had help from RGO and she was incredibly useful. I do feel that we need a more consistent and stable approach in place.

How do we find someone? Where do we look? How do we know it's working? How can we do this without going into the red every single month?

Is there someone we can call for help? We feel helpless and quite confused while we wait to see an OT+SALT (again).

As you know, dxing/edu therapies are expensive and we're beyond our last penny every month. NHS took their sweet time and are still taking their sweet time with everything. I'm working on a statement right now, but I do feel like I need help. I'm told quite often that someone can help me with it, but I'm wondering where I find someone who can help.

Do we get a case manager or something? Tell us what we are entitled to and how to go about getting it all?

IndigoBell Tue 07-Jun-11 10:43:06

For the statement, Parent Partnership will/should help. (There is one for each LEA, just google Parent Partnership and where you live...)

Also you need to apply for DLA. The NAS might be able to help you fill in that form? Or a local carers drop in centre?

If you qualify for DLA (which you should), you can then apply for carers allowance.

I don't know about anything else.....

eandz Tue 07-Jun-11 10:46:50

Thank you Indigo, your information is helpful. I wish I could rate it smile I'd give it 5/5 stars!

IndigoBell Tue 07-Jun-11 10:55:43

www.direct.gov.uk/en/disabledpeople/financialsupport/dg_10011925

DLA Rates

Disability Living Allowance is in two parts - the care component and the mobility component. You may be able to get just one component or both.

Care component Weekly rate
Highest rate £73.60
Middle rate £49.30
Lowest rate £19.55

Mobility component Weekly rate
Higher rate £51.40
Lower rate £19.55

www.direct.gov.uk/en/MoneyTaxAndBenefits/BenefitsTaxCreditsAndOtherSupport/Caringforsomeone/DG_10018705

Who can get Carer's Allowance?

You may be able to get Carer's Allowance if you:
* are aged 16 or over
* spend at least 35 hours a week caring for a person

They should be getting one of the following benefits:
* Disability Living Allowance (at the middle or highest rate for personal care)

How much do you get (Carer's Allowance)?
The weekly rate is £55.55.

So you should be able to get £100 pw.

I don't think you can get the mobility component until your child is at least 3 (or maybe 5)........

justaboutWILLfinishherthesis Tue 07-Jun-11 11:19:49

Message withdrawn at poster's request.

eandz Tue 07-Jun-11 12:55:37

no, justabout it's fine. I need to know exactly how to do this.

We had been planning financially for other things like a house one day, expensive educational needs in the future for N and our future children. We're young and we were quite naive about what things to earmark our money for.

Now that we've found ourselves in an expensive situation we need all the advice on where to cut down and how to do it. We can openly admit that need better ideas for budgeting as well and ideas for future savings. It's important and can only be advantageous.

I'm on here for advice and support but most of all for learning.

eandz

Even if you have no debt, MSE forums will help you to budget and manage your money and savings.

You can use the Cerebra guide to help you to complete the form, along with lots of chocolate and brew. We're just waiting for our decision now. There is also the Family Fund who can look at grants for you/your family.

Here is the MN guide to benefits you can claim which has all of the info as well.

eandz Tue 07-Jun-11 13:08:47

Thank you Ben10.

To be quite honest, we're almost out of complete debt, (well, we have another 12 months go to of our final payments) and it's the only thing that we had planned on and have actually managed. (I'm American, so my student debt bill was already at $120k by the time I got married, undergrad+grad school+international grad school). N was a very happy accident, but we had planned to be debt free by next year.

Although we will be debt free next year, we wont have any savings which is what worries me. As of late, our monthly outgoings have increased by a few hundred £ and it's really due to the extra therapies+nursery costs. I'm worried that I'm not saving enough money in places I could possibly be saving in.

I feel like we may eat out too much, spend too much on entertainment. I also worry that we try too many different therapies each month which don't really make a difference.

If you post your statement of affairs on the MSE forums then they can point out areas where you might be able to cut down but also things that you should be able to save monthly towards that I never used to and then got a shock - like car tax and maintenance.

Well done you for clearly that unbelievably huge debt shock. students think that they have it bad in this country!

Would it be worth sticking to one therapy at a time so that you can see the changes or not.

Another thing that I have just thought of is that I have had a grant from a benevolent fund related to my employment (Bank Workers Charity) and there are similar funds for most industries - have a google. So far they have paid £1600 towards a private OT assessment and 15 sessions of Sensory Integration Therapy, a large potty chair for his room and travel to various appointments.

clearly = clearing blush

eandz Tue 07-Jun-11 13:32:13

Ben10, that sounds like a worthwhile shot! Thank you!

eandz Tue 07-Jun-11 15:28:55

any more help ladies? I could use all your input.

justaboutWILLfinishherthesis Tue 07-Jun-11 16:14:38

Message withdrawn at poster's request.

eandz Tue 07-Jun-11 16:39:12

The only issue we have with ABA is we cant find anyone with good reviews, we don't even know where to look in London. Do you have any ideas?

justaboutWILLfinishherthesis Tue 07-Jun-11 16:41:57

Message withdrawn at poster's request.

TotalChaos Tue 07-Jun-11 20:24:25

can't help with aba as no personal experience. but there's stuff you can do cheaply - I am a great fan on hanen (It Takes Two To Talk, or You Make the Difference or More than Words) www.hanen.org - gives you lots of practical advice on helping you communicate with your child. Ask SALT if they run hane courses in your area. Jessica Kingsley press has a lot of useful books relevant to ASD/language. I found Playing, Laughing, Learning on the Autism Spectrum by Julia Moor v good. Check out your local library and bookshops, and have a flick through books on ASD.

Eveiebaby Tue 07-Jun-11 22:03:30

Does your DS go to a special needs nursery / mainstream nursery that has a good understanding of special needs. You can get up to 15hrs of nursery time paid for by the government although I think your DS may need to be three years old before being eligible but as these things all take time to organize it would be worth thinking about this now. Certainly start applying for a statement now as it can take a maximum of six months to go through the process.

eandz Wed 08-Jun-11 14:27:23

DS goes to a mainstream nursery who have a good enough senco (but I don't know how to judge a SENCO yet).

I'm starting the statementing process now, at least trying to.

it's soo lonely in the beginning, isn't it?

dolfrog Wed 08-Jun-11 14:41:00

eandz

Like all of these types of diagnosis you really need to research all of the possible issues and eliminate the ones that may not apply, so that you can focus on the issues that do apply to DSs individual needs.
Identification and Evaluation of Children With Autism Spectrum Disorders
and my be the table of possible criteria of autism
and then try to discover the best way to support the specific criteria that apply to your DS which may be included in
Management of Children With Autism Spectrum Disorders

eandz Wed 08-Jun-11 14:49:41

Thank you dolfrog

Eveiebaby Wed 08-Jun-11 19:51:19

Have you been offered an Earlybird Course - you would meet other parents in similar situations. I think I may have found that helpful in the beginning but unfortunately we were only offered a course nine months after diagnosis by which point there were so many other appointments etc happening plus DD was just starting school full time that we declined but I do know of others that have found the course useful. DD's behaviour is easy to manage at the moment but if things drastically change I may put my name down for Earlybird Plus (targeted towards parents with children who are 5+)

eandz Wed 08-Jun-11 22:59:51

No! we weren't offered anything like an early bird course. I really could use the support + camaraderie.

Eveiebaby Thu 09-Jun-11 20:24:15

I was also thinking at our local Child Development Centre they have a noticeboard which has info about local playschemes, support groups etc... it might be worth phoning your local CDC to see if they have any suggestions. It seems crazy but nobody seems to tell you about these things.
Remember you always have this board too!

eandz Fri 10-Jun-11 09:38:41

Thank you Evei!

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