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Autism-Please Help/Advise Me!

(16 Posts)
BiscuitDunker Sat 13-Jul-13 22:30:23

I apologise for the long post but I just wanted to explain our situation properly...

My dd is 3 (4 next month) and on thursday she was officially diagnosed with Autism. This hasn't come as a major surprise as we suspected it but now its official its really hit home and scared the life out of me and dh. We are a young couple (both 25) and have no idea what to do next and we feel completely lost.

Our dd means the absolute world to us and we want to do the best we can for her but we don't have the first clue where to start or what help is available to us so we would really appreciate any advice fellow parents of autistic children can offer.

Our dds autism is severe speech delay and lack of understanding. She has a very very limited vocabulary and the only one of the few words she says in the right context is "bye" and no matter how much we tell her or explain things to her she simply doesn't understand what is being said to her-things such as "don't climb that" mean nothing to her,but she understands "we're going out" and "time for bed",that's pretty much it. She only answers to her name half the time too.

She is a very loving,happy little girl and very logically minded and intelligent in her own way. We simply don't know how we can help to bring on her speech and help her to understand things. It has been decided for us that she will not be starting school in september this year and will instead be staying on at nursery for another year and the nursery can now apply for funding to get in a specialist member of staff to do 1:1 care with her but we've been offered no help or advice on what we can do at home with her. We have our 2nd baby on the way (due in october) and would like to have the right help and routines fully established by the time the new baby comes smile

Any help or advice anyone can offer us will be greatly recieved-the appointment with our gp this afternoon proved to be a waste of time as she couldn't help or give us any advice except to do our own research!

dev9aug Sat 13-Jul-13 23:07:11

Hi, I am sorry to hear about the dx. I found this place couple of years ago in a similar situation to yours. The best advice I have had from here was to look into Applied behavioural Analysis(ABA). This was the single best thing we did along with changes to the diet. The changes to the diet allowed him to learn and we used ABA as a way to teach him skills as he is unable to pick them up on its own.

dev9aug Sat 13-Jul-13 23:13:41

There are a number of things you can do yourself at home by using books recommended on here.

"More than words" by Hanen comes highly recommended. LEA's in some areas have Hanen courses run by SALTs to give parents something to work with, see if there is one in your area.

Where we are, we are allocated a family key worker so similar and she has been able to coordinate services like SALT/OT/Paed etc, have you got something similar.

There are early birds courses run by NAS, which some people have found useful(also a good way if meeting other parents in similar situation to yours.)

Our LEA also have parent workshops run by SALT/OT/Paed etc to advise on things like diet/sleep/behaviour/communication etc. sometimes these things are already there, you just have to ask the right person for it. All of these things will help in some way or another to help you get started.

boobybum Sat 13-Jul-13 23:23:12

Hello, you have come to the right place as you will get loads of helpful information from the wonderful people on MNSN!
Our son is also turning 4 next month and we too are holding him back a year so that he will be starting reception in September 2014. There is a lot for you to consider at the moment.
Are you or the nursery applying for a statement of special educational needs? You can apply for this yourself if they are not doing so.
Have you applied for DLA and carers allowance?
In terms of actually doing something yourself I would suggest you look into ABA (there are loads of threads on here about it). We have been doing it since last year with our son on a very part-time basis but I think it has made a real difference in terms of his cooperation, understanding, ability to learn etc. It can be expensive but you can do a lot of it yourself and apply for funding from a charity called Caudwell if you meet their criteria.
I would suggest you read a book called Motivation and Reinforcement by Robert Schramm.
We found giving our son fish oils improved his eye contact and also his language. He is still pretty much nonverbal but since starting fish oils he started imitating more sounds.
I'm sure there will be loads of useful replies for you so good luck with whatever you choose to do.

WilsonFrickett Sat 13-Jul-13 23:41:08

Get a big book. From the back, write down all your appointments, phone numbers, people's names, websites and recommendations - like the NAS early bird course and Hanen, for example.

From the front, keep notes on your research and things you'd like to try/strategies you'd like to put in place. Never work on more than three things at once. Prioritise.

Read and read and read. But don't leave your commonsense at the door. There's a lot of miracle cures and snake oil out there. Take time to absorb the diagnosis and to come to terms with it. Don't focus on 'fixing' your child - focus on dealing with 2/3 priorities at once. I find that to be a good filter, it keeps me away from 'cures' and focuses the mind on what I am working towards.

Wrt 'officialdom' - trust no-one. Within 6 months you will know more than most teachers, TAs, nursery staff, psychologists, etc. I'm sorry I had to write that. But I believe it to be true.

And Drink wine. Lots.

WilsonFrickett Sat 13-Jul-13 23:42:33

And definitely try to get on a Hanen course if your area offers them. I did mine 4 years ago and it still informs most of my day to day work with DS. I also recommend ABA, but it's not for every family.

BiscuitDunker Sun 14-Jul-13 12:15:56

Thank you all for your replies smile Will look into ABA and Hanen and see what is available in our area. Have found out about a local autism charity in our area that offers help and support so going to ask them if they know what courses are available. Out of curiosity what is lea and nas? Our dd is already under a salt and has been for a little while but they were limited on what we could try as there was clearly something else going on with her (autism as we now know) so could only offer general exercises which have had no effect. We're seeing the salt in a couple of weeks time so hopefully now we have a diagnosis she can help us more tailored help smile

With regards to getting her statemented-how do we go about this? Assuming her letter stating her diagnosis is not the same thing? Have been told about dla and carers allowance by the lovely senco at our dds nursery so filling out those forms this weekend ready to send off next week smile

Going to look the books that have been suggested in our local library but if they don't have them will order them off amazon. Have looked books up on amazon and one that looks like it could be good is "Getting the Best for Your Child with Autism: An Expert's Guide to Treatment by
Bryna Siegel",has anyone read this or know if its worth getting? Any other book suggestions or even website suggestions are greatly welcomed smile We really appreciate it thanks

osospecial Sun 14-Jul-13 12:43:52

Hi, my dd is also 3 (4 in september) and has very similar problems with speech and understanding and I would also recommend the hanen more than words book as a great place to start, I think I purchased mine through 'winslow' and paid around £30 (just letting you know that as I have seen it for nearly £50 on other places like ebay). PECS (picture exchange communication system) helped my dd kickstart her communication as she is a visual learner, it helped her understand how to request things which has helped bring her speech on (the SALT should know about it). I also do some ABA now aswell. I would definately start with the hanen book though, I think its easy to get bogged down with too much information and not use any of it effectively!
Btw the LEA is the local education authority, you have to write to them to request a statutory assesment of your dd's educational needs in order to get a statement of special educational needs. There is a template letter for this on the IPSEA website. The NAS is the national autistic society, they have a website. HTH

BiscuitDunker Sun 14-Jul-13 14:00:09

Thank you for that,can make more sense of th replies now lol. I will look the template letter up and find out where I need to send the letter to smile

Hanen seems to be a popular option so we may start there and see how we get on. Have seen picture communtication cards online and have already decided to get some to try and get our dd to find some communication that way. We've tried doing makaton signing with her but it didn't work,she just simply didn't understand,a lot of the time its getting her to understand things that is the main issue and can be the most frustrating...

As our dds are so close in age and have similar problems I'm hoping what has helped your dd will also help mine osospecial smile I know that no 2 children are the same and that what works for one may not work for another but anything and everything is worth a try in our eyes smile

osospecial Sun 14-Jul-13 21:03:21

Yes I know what you mean about the understanding, this has always been the biggest hurdle with dd. We tried pecs just before xmas and it really kickstarted her understanding of asking for something+receiving it as she just didn't 'get' this before. The idea is they pass you a picture of, say chocolate, (start with your dds favourite thing to motivate) and you give them the chocolate and say 'chocolate', give one little piece at a time so there are lots of opportunities to keep doing it, get a 2nd person to help your dd pass you the card to start with if neccessary. Dd picked it up very quickly and within a couple of days said 'choc' while passing me the card+now we don't bother with the card as she can ask for that without it. We don't rely heavily on the cards but I really found it helped her understand about requesting items and we have built on it from there, now she has a handful of things like 'juice' 'bath' that she asks for independently without needing any cards. I get a lot of pictures online from google pics and laminate them myself or you can even use actual photos if you think it would work better. I think there is more on pecs in the hanen 'more than words' book if I remember correctly.

BiscuitDunker Sun 14-Jul-13 21:19:12

Oh wow! That's amazing that even within a few days she could understand just that simple little thing with the chocolate just by using the cards! I know to some people it would sound silly but it must of made you soo proud of her! I know I feel incredibly proud when I say something to my dd (for what is probably the hundredth time) and she actually does it because she finally understands what is being said,even something as trivial as "dd its bedtime,go to bed" and she actually goes and gets in her bed and waits for one of us to come in and read her a story (she only did this for the first time a week ago but now its a daily thing!). Its a big achievement and milestone given that for years of us saying it she never understood it and wouldn't move,just look at us with a blank expression on her face!

I've looked up the 'more than words' book on amazon and its £33 but currently not in stock,going to find the wimslow press website and look for it on there and compare the prices. It sounds like it will be of a lot of use,not just now but in the years to come aswel going by the customer reviews smile

dev9aug Sun 14-Jul-13 22:39:40

biscuitdunker If PECS interest you, then the people who come up with the system regularly runs courses all over the country. See if they have one near you which you can attend. It is a two day workshop but if you are keen on doing the therapy yourself, this will simply be the best money you will ever spend as they go through the basics of ABA on the first day as PECS is essentially ABA. link here

dev9aug Sun 14-Jul-13 22:42:17

Also, some people do get lucky, but generally even the SALTs don't really know how to implement PECS properly so they end up making it more difficult than it is. So do go on the course yourself, it really is incredibly simple to do if done properly.

osospecial Mon 15-Jul-13 12:21:31

Hi biscuitdunker, yes we were very proud when dd understood it so quickly and it was great to find something that worked for her as progress can be painfully slow. Dd sounds very similar to yours as I'm also really pleased at the moment she has started understanding simple words like 'bath' and 'bed' as she wouldn't have a clue what I was saying before. I've been on the 2day pecs course, but we had the book+some pictures and a simple explanation of how it works to begin with from our salt. Its quite easy to understand. Maybe a one off session with a private salt may be usefull to you? I did this with dd when she was 2 and got a very detailed report on stratergies/ideas to use with dd.

osospecial Mon 15-Jul-13 12:42:14

Like dev said though, it does depend on the salt and how good they are. We were very lucky to have a salt who had a ds with asd so knew what she was talking about and was helpfull (we just didn't get to see her anywhere near enough IMO). (Unfortunately since dd started school we have a different salt now)

BiscuitDunker Mon 15-Jul-13 21:24:49

Thank you for the link dev9aug,doing a course/workshop is definitely something I'd be interested in doing as pecs sounds like it will be a good place to start for us,sadly the courses closest (but still hours/miles away from me) are on around the date my baby is due so I wouldn't want to risk going that far from home,just incase lol. Got an app with dds SALT next week so I will ask her then if there's any more local classes or if she can give me information on who to contact for a private session as osospecial suggested smile I'm very grateful for all your help and anything you can suggest we look into and try,we feel less lost now than we did a few days ago!

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