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Amelia

How to bring it all together. Felling lost.

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Hi

 

My youngest son was diagnosed ASD in December last year. I feel that much of the information I have gained has been almost by accident, eg bumping in to someone who asked have you heard of this etc. I wish there was someone who could lead me through all this. I don't know if I am assessing or receiving all the available support or services for him.

 

I would like to know if anyone has/had a liason worker or similar to support them.

 

We have SALT, dietician, paediatrician and are waiting to see a psychologist.

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Depending on the age of your child it sounds like you could do with a help! or Early Bird course from the National Autistic Society, or a local support group that can help you with navigating provision in your area.

 

If you're having trouble finding a group, Contact a Family can help.

 

Good luck. It does take a long time so get your head around it all, so don't be too harsh on yourself.

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Hi amelia -

 

Not good news, I'm afraid, but maybe not bad news either...

There isn't really a 'standard' nationally - it's a bit of a postcode lottery.

That you are getting input from SALT and a consultant Paed on a regular basis seems to indicate you are in a better position than most. Referral to dietician - through them, or through/for some other concerns outside of the spectrum? If the former, they really are on the case!

The paed should be able to give you SOME pointers toward local services/support groups. Better yet, give the NAS a ring (or check out the website) - they should be reasonably informed on local services for your area. [An NAS 'early bird' course is a good starting point, and will help you to 'network' with parents in a similar position in your locale]

Ditto your local social services - especially any specific 'child disability team' or suchlike.

Having said all of that, the reality is that most of the networks you find will be down to your own hard work and determination: some areas are better than others, but ALL areas are under funded, under resourced and oversubscribed. :(

 

Very VERY best

 

BD :D

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Thanks he will be 4 towards the end of August.

 

He was refered to Dietician as he will mostly only eat dry things and things that are whole (not broken or a piece missing.) He was refusing to eat at all at one time. Now everything has to have a separate dish.

 

Just trying to do my best for him and can't help thinking i don't know enough.

 

It doesn't help that friends and relatives think we are making it all up. :crying:

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Amelia >:D<<'>

 

Our youngest dd was dx with ASD in Nov, when she was 5. She also has muscular dystrophy, dx when she was 3. Family and friends, pah :(:( We've felt somewhat let down by them over the years. A few have been fantastic though :D We began the Early Bird Plus course in May. Finding it worthwhile. So great to be able to just listen to other families, the isolation just seems to slip away, plus we are learning alot :D Feel so understood there (and here). This forum has really helped me :D Not tried any local support groups as yet, not brave enough I suppose. Feel as if I'll clam up in the corner :lol::lol: We've not had anyone to liase with, and have pretty much had to find our own way. Found out more on this forum in the few months I've been a member, than I've ever been told by the professionals :D Our dd has a very limited diet. Same breakfast, lunch and tea for years now. Recently she has also begun to insist the ends of chips and sausages are removed and her cup and plate are blue :rolleyes::rolleyes:

Edited by Bagpuss

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I agree with callmejaded. I would wholeheartedly recommend the Help! courses run by the National Autistic Society.

 

They act as an excellent road map to what byou need to know and they are free. It's also worth it just for the opportunity nto meet parents in the same situation.

 

Contact the NAS for more details.

 

Simon

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Another good thing for me was the 'Early Support' family pack from the DfES website, not sure on the links but if you search on the DfES site it should come up. Came within a week and its a big pack with lots of leads for services - it helped me to know what I was entitled to and where I could find it and gives you folders for organising all your childs reports and things like that.

 

I've been given a place on a Help! course in July (Isle of Wight) and there seem to be a few on in other places over the next month or two.....

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I agree with callmejaded. I would wholeheartedly recommend the Help! courses run by the National Autistic Society.

 

They act as an excellent road map to what byou need to know and they are free. It's also worth it just for the opportunity nto meet parents in the same situation.

 

Contact the NAS for more details.

 

Simon

 

Ditto, we went on a day course earlier on this year (my boy was dx'd last year) and it was fantastic, defintely the most useful information ever, there's so much we're not aware we can get - get signed up for a Help! course. There are 6 week courses too but hubbs and I couldn't commit to that timescale so the day one suited us best.

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Hi we are also fairly new to the system as we have found our son has asperger syndrome in the last few months.We found our parents advice centre helpful especialy with educational issues.we have an advisor who helps as needed-you should have similar support in your area-I think the council wil lhave info.

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Hi Amelia,i'm also quite new to the ASD world,few days ago i went on the NASwebsite and looked up the Help courses,there isnt any in my area at the mo bur i registered for them to let me know when one comes up!The following day a man from NAS rang me to say as soon as one comes up in my region he will ring to let me know,thought u could do same as me!!hope this helps

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The National Service Framework for Children comes with an autism exemplar attached to it which strongly advises that all families with a new dx of autism should have their own Key Worker. The role of the Key worker is to act as liasion/information gather/support worker for the family. At the moment it looks like there are not many Authorities who actually operate this exemplar which is not good news for families :(

 

Where I live my support group appears to have taken on this role in an un-official and unpaid manner. There are families who are desperate for help and for someone to draw all of the pieces of the jigsaw together for them. No one is undertaking this task. We have been setting up meetings and bringing professionals together for our families. It should not have to be like this as we are also living with autism.

 

A draft of an Autism Plan for our Authority has just been circulated and there is no mention of 'Key Workers' something that we AIM to address. I personally believe that any family who has a disabled child should have a Key Worker - dream on :(

 

Oracle

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Hi Amelia,

 

My daughter got diagnosed towards the end of last year and following on from all her assessments the CPN from CAHMS continued to visit her every couple of weeks (at home) for an hour or two - this finished a couple of weeks ago. The reasoning behind the visits were self awareness for my daughter to come to terms with AS/ASD and talk about any issues she may have or problem areas we had that she thought she could help - sometimes the visits were totally pointless as my daughter would be unco-operative and shut down after 10 mins - other times she would engage with her (although usually 30-45mins maximum - after this she'd had enough) and we'd feel like some progress had been made.

 

They have now withdrawn their services as diagnosis has been made and they feel that the self awareness has progressed as far as it will at this juncture, and they said they will probably see her again for a similar thing in a few years.

 

She was 12 when diagnosed so I don't know if that makes a difference. Other than than - we have no support at all - it does seem to vary in different authorities.

 

Take care

Jb

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I am feeling a little more positive this week. We saw the psychologist last Wednesday and he agreed to put DS2 on his list officially. I see him for both children but could only make appointments for DS1. Am awaiting an another appointment soon, at another venue with child care so I don't have to destroy son's self confidence any further. I have decided to ask each professional that we see "What happens next?" rather than try and work it out myself.

 

We have had lots of meltdowns today. DS2 pinched and beat up my OH, but left me alone this time.

 

We have both IEPs tomorrow and I am ready this time :star:

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Both IEPs were very positive but left me feeling rubish. I feel that they can cope so well and that I must be ###### at it. There was a lady there who no one introduced and everyone was refering to a report from the specialist SALT but I didn't have a copy. I know I should have asked but somehow I didn't. I was kept waiting for 15 mins after my appointment time so I was irritated to start with.

They called elder child in for 10mins, he said he has loads of friends, and is very happy. When he got home he was screaming, sobbing and hitting himself for 1 1/2 hours about how he hates school and how he hates the children for being mean to him. So I don't know what to think. :crying:

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