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Is anyone else struggling with ASD even WITH support of Portage, diet interventions etc

(20 Posts)
runikka Mon 18-Aug-08 11:15:25

Good morning

Following a horrid weekend, I just wondered if anyone else feels they are never getting any further in helping their child. Daniel has Portage once a week but we can honestly say that we cant see that it has helped in anyway We expected the Portage worker to be able to help us learn ways to engage Daniel but he spends most of his sessions running around the room whilst I talk to our worker. We started PECS last year but had to stop when we moved house (changed Portage workers) and havent been able to get it going again. We have started the GFCF diet in June and Daniel has numerous supplements but since then his autistic behaviour has increased with daily hourly tantrums now being the norm (he used to be placid) and his self-limiting food issues have become even worse (refusing his cereal and soya yogurt for a pure gf toast diet).

I feel such a failure because we so want to help him but it is making life so miserable in the process. I dont want to go back to the boy who seemed drugged on gluten/casein but he really did seem happier and calmer overall.

Thanks for reading, rant over.

cyberseraphim Mon 18-Aug-08 11:24:34

Sorry to hear things are not going well but you have had a lot of changes to cope with - house/portage workers. My philosophy as far as I have one is to keep it simple and don't try too many approaches all at once. Engagement is a key issue for ASD children so maybe this is what you have to focus on - What does the portage worker say about how to engage him - what does she think should be happening in the sessions?

nikos Mon 18-Aug-08 12:58:22

How old is Daniel? One thing we found helped was going on a More than Words course that are run by your local speech and therapy unit. That teaches techniques you can do at home for engagement. I think the NAS also runs one called Early Bird.
I think very few of us know naturally how to reach ASD children as they have such a different way of thinking - so don't feel a failure, what you need is information.
Hopefully someone else can come with more info.

cyberseraphim Mon 18-Aug-08 13:02:56

We are starting the 'More Than Words' program in October but we have the book already and it is an excellent resource for techniques on how to engage an ASD child.

runikka Mon 18-Aug-08 13:41:47

Daniel is 3.5 years and we are just starting the statement process. The biggest problem we have is that, for the most part, if we are both home present with him, he is a placid loveable little chap. So when grandparents babysit they solely have him and dont see the meltdowns as such. It ends up making us feel that we are making up how bad the bad days are iykwim. I have even considered filming a meltdown to prove we are not making it up and that it cannot just be dismissed as a toddler tantrum (our daughter has those for us to compare to) Until recently we were thankful that we could go out reasonably un-noticed but his stimming and screeching are now very noticeable in comparison. Dont get me wrong, I love my son to bits but it hurts to see my daughter (aged 2) stopping what she is doing to stare at her brother, having her playtime continually halted because he will not share our attention or becomes upset by her making a noise or being pushed because "she is in the way". Daniel is completely non-verbal so he cannot express and we hoped Portage would just help us learn some way to communicate and engage but it seems so bitty and each week seems to be producing the ideas of what we can do with no actual implementation. I know it is a two-way thing with Portage, we have to put in the effort aswell and everything will be a long process but we dont feel we have started anything....new portage worker commenced in March

We started the gfcf diet not expecting a miracle cure but maybe gradual awareness increase and less hyperactivity. We have had slight improvements in both but he seems constantly hungry or agitated by food choices which only goes against any improvements we have seen.

Sorry to go on....

nikos Mon 18-Aug-08 13:52:30

Have you had any contact with a speech therapist?

nikos Mon 18-Aug-08 13:53:18

Does he have any particular toys/things he does engage with?

Seuss Mon 18-Aug-08 14:07:59

Did you have any success with PECS before? My ds has found it very useful even though he started quite late. Sorry we never had Portage so I'm not sure what they do exactly but if your portage worker doesn't use PECS could she put you in touch with someone who does?

cyberseraphim Mon 18-Aug-08 14:10:58

It can be difficult to get past the ideas stage. Sometimes there can be too many ideas and you get confused and bogged down. Have you tried something simple like developing a rough and tumble game into a verbal game? Say 'Ready Steady' then don't do what he likes until he says 'go' 3.5 is quite young in ASD development terms. When I first looked at Hanen when DS1 was 3, I thought he wouldn't be able to do thos things but now at 4.4 he can.

runikka Mon 18-Aug-08 14:48:00

We have had brief contact with a speech therapist, three monthly assessments and I think it may become more frequent from September

With PECs we got to the first stage of not having to prompt Daniel. The problem was his motivator was biscuits and for a while he would only eat biscuits for his main meals so we stopped this as no real motivation. He does have a few toys he fleets between but only for very short periods of time, two-three mins max.

Seuss Mon 18-Aug-08 15:00:56

We used to do the 'ready steady' game - usually when ds was on the swing and I'd pull him up and say ready steady and not let go until he said go.

sphil Mon 18-Aug-08 16:14:58

We found the best 'way in' for DS2 was through what the Hanen course describes as 'people games' - rough and tumble, swinging, jumping etc. We'd do the ready steady thing, or sometimes count, 1,2 3...

The other thing we do is to get a game like this going (I say 'game' but really it's just a repeated action) and then pause so he has to ask for it. This could be with a noise or gesture - it doesn't have to be a word.

I sympathise with your issues with the gf/cf diet - DS2 also became more self limiting after we put him on it. We lost the cereal option too! But it made him much more settled at night so we've carried on - for the moment at least. I'm thinking about trying enzymes instead but don't want to introduce anything new while potty training! The increased tantrums might be a sign that he's withdrawing from gluten and dairy, so a good sign iyswim?

nikos Mon 18-Aug-08 16:21:51

I would definitely contact Speech therapy again and see if they run More than Words.
I also got results with the stopping mid game.
You can also extend it to everyday actions - so when you are pouring him a drink put a little in a cup and he has to gesture/speak for you to continue.
What also really helped us was interuppting ds in his play. So if he was playing with a train track, we would get down beside him with another train and make them crash. Or a jigsaw, hold one piece so he has to ask for it in whatever way he can.

runikka Mon 18-Aug-08 18:40:15

Hi

many thanks for your replies. I will look into the more than words course

Daniel has just come home from Parents-in-law and started creating a fuss because he wanted a drink and something to eat (toast). MIL just said he never does that with us, he is playing you up and went on to say how he waits patiently for food with them. It just makes me feel like a complete failure as a mum I guess we do rush to get him something as soon as he comes in because we know he will create a fuss but for so long it has been his routine to get a drink as soon as he comes in the door and I was momentarily distracted by something else hence upset. He's fine now bless him lol

cyberseraphim Mon 18-Aug-08 19:15:36

I would take that as communication - that he knows a fuss will get through to you. The next stage is to get him a stage further on either with PECS or a word approximation.

cyberseraphim Mon 18-Aug-08 19:18:00

Grandparents take much longer to accept and understand autism than the parents so try not to take it personally. It's just their way of carrying on hoping that there is nothing really wrong and that the parents are worrying over nothing.

moondog Mon 18-Aug-08 19:20:43

Runnika, I'm a speech and lang. therapist. PECS can help a great deal but you need proper training. You need to go on the 2day course.Look at website of Pyramid Educational Consultants for details.

Look into ABA too. More use than salt for your child probably.

runikka Mon 18-Aug-08 19:32:30

Thank you for being so understanding to my rantings. Feeling a bit better now as I can hear him in his room giggling and bouncing on his bed Parents-in-law mean well, they just love him to bits...we all do!

We are meeting with his nutritionist tomorrow, plus an ABA tutor AND portage worker so I may voice my concerns with all three.

It is good to know we are not alone and I know I have a lot to be thankful for, especially in my little boy. I just need to lose the feeling of helplessness and use my energy in something more constructive.

moondog Mon 18-Aug-08 19:34:18

Good news re ABA tutor!
You sound great and arewilling to roll up your sleeves at was is avery young age.
Keep posting. This section is sooooo useful.

nikos Mon 18-Aug-08 20:49:18

I think you sound like a fantastic mum - you know there is a problem and now you want to put everything into sorting it. I bet there is not a mum in the land with an ASD child who has not got it wrong at times. The nature of ASD thinking is to be a bit 'unusual' at times so it is no wonder we can't second guess it.

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