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my son was diagnosed this past Friday.

(31 Posts)
eandz Mon 23-May-11 22:11:22

Hello ladies,

On Friday my ds (2.7 yrs old) was given a working dx of ASD.

I know what it means, but really, what does this mean for me? I know it's a long road of sencos/statements/more tantrums etc. Tell me though, in your words what I need to hear.

My mother in law is in hysterics and I can't get a word in edgewise, I tried to tell her it's not the end of the world. My own parents are telling me that it'll be a difficult road for me but that my ds will be okay.

you need to take some time to process the imformation and when your ready find a group of supportive understnading people to off load on. Write a diary if you think it will help.
Be prepared to tear your hair out while your proffessionals get their arse in gear to do something once paperwork comes in.
Be prepared for a rollercoaster of ups and downs BUT mainly grow a tough skin and be ready to fight your sons corner and dont forgot to remind everyone he is a child first and formost, and has rights, feelings and isnt a dx he is him smile
and welcome to the mad hatters club grin

eandz Mon 23-May-11 22:30:24

thanks smile

5inthebed Mon 23-May-11 22:32:33

DS2 was dx about the same age. It is a lot to take in.

Firstly, ask if there are any toddler groups specifically for ASD. DS2 went to a great one, which the EPs and SALTs ran and worked with the children. I found it very helpful talking to other parents who have been where I was.

It took us about a year to come to term with the DX, so take it very very slowly.

And apply for DLA! It opens up a lot or you.

And lastly, <<<<hugs>>>>, it is just the beginning.

moosemama Mon 23-May-11 22:58:01

As Lisa said. Allow yourself time to process it all, there's no rush to do anything a the moment, take your time to read up, ask questions and forge links.

Joining your local ASD support group might be useful for information gathering and making connections in the right places.

Your parents are right, in many ways it will be a difficult road, but its not all doom and gloom. Our children are all blessings and bring us just as much happiness and sunshine as NT children do - more in many cases, as their milestones and achievements are often much more deserving of celebration.

And make sure you stick around on MN SN to read, question, ask for support, vent, share and celebrate - whatever you need, that's what we are here for. Oh - and on Friday nights, come along and share virtual wine and chocolate with us on the Friday Night thread. smile

eandz Mon 23-May-11 23:00:52

Thank you 5inthebed. smile

Did you find the toddler groups helpful? Were the other mothers skeptical of your early dx? I'm asking because other mothers in my area can't believe we've been given a working diagnosis. They think I'm lying or that I'm confused with the language that was used (I find this opinion to be quite offensive actually!). I don't know why some kids can be diagnosed earlier rather than others. Is there anything written about it?

eandz Mon 23-May-11 23:06:19

Thank you Moosemama smile

I'll come along on Friday nights!

EllenJaneisnotmyname Mon 23-May-11 23:35:06

Hi Eandz. This is a story of hope for you.

My DS2 was officially DX at 3.7 (paed brought up ASD at 3.1) and only that late because my first DS had significant but NT speech delay so I just thought 'here we go again!' and didn't worry enough. (Oh, the guilt.) TBH to get a DX this young my DS had some classic and obvious symptoms. There was no doubting the DX for my DS, and he still is obviously autistic at 11. But, I have to say there are lots of advantages to 'not being borderline.' Getting support is easier, getting past denial and on to action is easier, progress can be more significant.

My DS2 is HF ASD but non verbal until he was 4. He comes on in leaps and then plateaus for ages (frustrating.) I have no qualms telling people about his DX, he doesn't care and it's bloody obvious there's something. He is pretty much happy, except when cross, but then he's cross and upset rather than sad and anxious and he gets over it quickly these days.

He got a place at a special early years school at 3.3 where I met great friends among parents and staff. Using PECs and Hanen "More than Words" he started to communicate. He talked in sentances by 4.5. By 5 he started MS school part time and could read, by 6 he was FT and had a statement. Now he's 11 and popular; despite not wanting any friends, the class like him. He plays alone but has just been voted school council rep by his class unanimously for the 3rd time. He's left today for his Y6 residential (wibble) and is going to MS secondary in Sept. He's age appropriate in literacy and above average in maths.

EandZ, there is lots of hope, lots of fun, lots of heartache, lots of battles. I love him to bits, and I truly wouldn't change him.

((((hugs)))) on your DS's DX. Take time to get used to it, allow yourself to grieve, because it's a very real grief. But you haven't lost him, he's just the same lovely and infuriating boy he's always been. You now have more tools to help him and more ammunition to fight for him.

eandz Tue 24-May-11 00:05:29

Thank you EllenJane.

My dd2 was given a working dx at 2year 10months and got her full dx last week age 3years 7months. Yes some people question it because she is young and high functioning but some days there's no mistaking it sad
I found a support group has helped no end, but know it's not everyone's cup of tea.
You will find people question it as many still believe to be autistic means you rock back and forth and scream at everyone.
Early intervention is best thing for your ds, so ask for what you need.

eandz Tue 24-May-11 00:09:31

Okay, it will be the first thing I ask about tomorrow morning.

EllenJaneisnotmyname Tue 24-May-11 00:12:00

Hey, lisa, I like the Mad Hatters Club!

eandz Tue 24-May-11 00:28:11

is this the same mad hatters club thats throwing that ball in a few weeks?

EllenJaneisnotmyname Tue 24-May-11 00:36:54

Ooh, I don't know? What does Lisa say?

IndigoBell Tue 24-May-11 05:05:42

Eandz - Firstly congratulations on a dx. Your DS definitely has ASD. That is why you got a dx relatively young - but anytime after 2 is not that young.

The good news is you no longer have to battle for a dx.

Have you told the nursery? That is one of the next things you need to do.

I second looking for an ASD playgroup / nursery and also find out if you have a local NAS group

Thirdly, remember. This is a marathon not a sprint. You have a long time to sort everything out.

Fourthly, look after yourself as well as much as you can smile

Welcome to the mad hatters club.

5inthebed Tue 24-May-11 13:03:26

I fund the todler group very helpful, especially so soon after the dx. All the mother were in the same boat, they all had toddlers with autism, the youngest was dxed at 20 months.

eandz Tue 24-May-11 16:13:06

I'm looking for an asd group and I can't find one in my area. Will I have to start one on my own?

ask around first, theres bound to be one. Ask NAS

eandz Tue 24-May-11 16:31:21

I looked on the NAS website that IndigoBell linked and I can't find anything. I may just call NAS again and see what my options are.

where are you?

Agnesdipesto Tue 24-May-11 20:53:53

My DS got his official dx at 30 months, but we diagnosed him off the internet within days of regressing at 27 months.

In our case he lost so much speech and skills it could only be ASD or worse.

Childrens centres may run groups or the local portage service. You might be able to get portage. You should also be able to get 1:1 in nursery (even without a statement). Also DLA, Carers allowance etc

Contact a Family is a good website with leaflets on all the entitlements and the NAS.

Our NAS group is down to a few volunteers but the good thing is if you want to do something like set up a group the ability is there as insurance, charity status to fundraise etc is all in place. Many childrens centres would jump at the chance of a NAS group

Take one thing at a time, post a new thread on that if you get stuck and bit by bit you get there.

eandz Wed 25-May-11 21:03:42

i'm in NW london (but far far from barnet/harrow/richmond/kingston)

nicevideoshameaboutthesong Wed 25-May-11 21:07:07

DLA. nuff said.

eandz Wed 25-May-11 21:38:01

i don't understand DLA (sorry, I'm American)

EllenJaneisnotmyname Wed 25-May-11 22:29:06

You live in the UK, though? Is your DS dual nationality? DLA is disability living allowance, comes in 3 rates for care, and 2 rates for mobility. It's not an insignificant amount of money, it's not earnings related and it's for your DS. It's to compensate, at least a bit, financially for the extra expense of having a disability. It's a bugger of a depressing form to fill out as you have to highlight how your DS needs more care than a 'average' child of the same age.

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