Would do anything for dear kids

[Lovelyboys]

Hi everyone,
Ds1 2.6 has been daignosed with gdd and Asd with learning difficulties, Interaction on his terms, watches tv most of the day, sleep issues, diet is also limited to carbs, stomach issues, severe language delay, babbles without triggers,
Dh has done lot of research and have started ABA but tutors still working on things that motivate him which is limited ...
What worries me most is will he be Independent and have a life of his own?

NB: new to mums net

Welcome lovely you have come to the right place.

Hi lovely.

Welcome to MN.

Hello

Welcome!

Hi lovely and welcome :)

Hi lovelyboys, I have a 6 year old with GDD, he has come a long way and gives us joy everyday. It is hard work, but work that pays off.
Good luck. Xx

Thankyou ladies!
Feels nice to share my mind without being judged, since the days we have found about DS1, have told friends and family, everyone telling me same thing, don't worry he will catch up,, u just need to work on him,, if he fine, what are u on about,, don't think about future, he is ok, (sorry dint mention he was born at 24 weeks)
It make me think if I am talking to the right people?, are they actually my friends?, do they even understand me or are they even listening to what I am saying?, but finally I agree with ineedalife, I am at the right place.
Make me feel a lot better.

I have a 4 year old son with GDD ASD Learing difficulties. A year ago he was non verbal but babbled all the time, huge sleep issues etc. I can't believe the progress he has made in a year - he goes to a special school and his speech is slowly mproving, sleep issues are not so bad and we are learning to understand some of the triggers for his meltdowns.
Will he ever be fully independent - I don't know and I try not to think about the future too much because nobody has the answers.
Set small goals and celebrate each tiny achievement, focus of what he can do rather than what he can't.
A lot of people think they are helping when they repeat stories about x would didn't talk till he was 5 and is now fine etc !!! We all go through it I think - it is very frustrating when people just don't "get" it. Friends / family will fall into two camps - those who support you and accept the situation (for some it takes time to sink in) and those who don't want to understand and can't cope with the situation.
I'm of the opinion that people have to accept ds for who he is - meltdowns, flapping, strange behavior and all!!! If they have a problem with that I'm not going to worry about it - it's their loss.

cwtch that is exactly how I feel (what a nice post, very positive), and welcome lovely. I think many of the people here on the SN board have had the frustration of people saying oh don't worry so much he'll catch up etc etc, when to you as the parent it is obvious that is not the case. I recently had my parents visiting for Xmas from another country and it was pretty clear that they thought my DS's difficulties were largely related to my parenting ("oh he needs a smack, you shouldn't just let him get away with that etc etc)...They were trying to be helpful but it was very difficult.

Hello and welcome. Yes it is very common at preschool age for people to be so insistent on looking on the bright side they don't realise it's not helpful to anyone other than themselves. By getting going with quality early intervention you are giving him the best chances of maximising his potential, I hope that his communication improves soon.

Thanks cwtch for positive reply, inspired me
totally agree with you dudesmummy felt the same when mom and mil comes up with things like have u tried this or have u tried that.
Lightpassengr, i am Very hopeful about improving his communication by early intervention, just waiting for it to start.

Hi lovelyboys. There is a lot of knowledge about ABA on this board, (not me, though!) so you are definitely in the right place. Always good here to share experiences, have a rant, get some advice and celebrate achievements. I have 3 lovely boys DS2 is 12 and has ASD.

So true ellan, very positive

Hi Lovelyboys,

Sorry not to have replied to your PM but I am in the middle of the ultimate challenge of seeing 12 schools in a fortnight plus arranging the logistics of childcare to enable it.

How experienced are your ABA tutors? What has your Consultant said about motivation?

The thing about motivation is that you don't need to go looking. The thing that is motivating him most of all, right this second, is the thing that he is doing right this second. If something else motivates him more, he would be doing that instead.

If my ds misbehaves I can say simply 'okay then, that sofa you are sitting on, you can sit on again when you have answered the question' etc.

Or ask him where he is going. If he replies he is going upstairs I can say simply 'okay then, but could you please pick up your jumper first' etc.

It doesn't have to be a special magic toy, although for most children special magic toys are more reinforcing than sitting on the sofa.

But at your ds' stage your tutors should be carrying out reinforcement tests (forgot the technical name for it) where they make available a variety of things and then count the number of times he reaches for each one etc. Are they doing this?

Hi Lovelyboys. My DS has ASD and regressed at 2.3 losing most of his speech, all his social interest in others etc. He is now 5 and is making good progress, he can speak in sentences and is affectionate, clever and mostly happy. His sleep and diet have improved with ABA. Will he be independent? I don't know. I don't know when I will know maybe at 8, maybe 10, maybe later. I feel quite optimistic as long as his education focuses on the key things - being independent, turning an interest eg in computers into something he can do as a job, life skills, social skills; and he's not just sat in a mainstream class with 90% of it going over his head.

I do know ABA is the single best thing we have done. We did a PT programme ourselves from 3-4 and then got it funded (via tribunal) from 4.

My DS is very passive and it can be hard to find things that are motivating and for DS the light up toys and spinning tops did really work at 2, as well as rough and tumble play swinging him around and upside down and songs. He was also obsessed with flash cards. The passive children can be tough to motivate especially at 2.
My DS liked alot of cause and effect toys eg pop up toys, cars that go down ramps etc and he loved this which has an element of surprise. If you have a toy library near you that would be worth a look as if your DS is like mine his interest will be a few seconds per toy so we needed lots of things to keep him interested.

I would say it took my parents 2 years to really get it. Once they saw progress was not going to be miraculous but slow and steady things got easier. They will have a grief process too.

Thank you all once again for Sharing your experiences make me feel a lot better
Starlight- the tutors are experienced, consultant is excellent but at this stage he has asked the tutors to find reinforcers to
Motivate him and what annoys me most is that tutors are not following everything the consultant says, I am just gonna give them a month and if they still not follow everything that the consultant, I might have to look for alternatives... It's such a pain to find the right tutors...

Yes. It is hard.