DS very very delayed help!!!!

[malfranco]

Merry Christmas everyone,

I need some advice. I have a ds that according to the so called experts global development delay. Would like to hear anyone else whos precious has been diagnosed with this.

He is way behind in his milestones sat up at 9mths, crawled at 16mths and is not quite walking at 28mths. Does not say a thing, call me daddy, say mummy, car, cat. Bought him lovely toys but never seems interested, does not like books. Has to be fed but does eat finger foods. Has poor muscle development and an imature eating action. Having to start to teach him sign and is still on bottles suffers aspiration. Has inhaler and movicol because does not go for number to regular. As you can see my ds has a lot of issues, I love him to bits but really starting to worry for his future august baby and will be youngest in year. He has strange manorisms as well always flapping his arms and wriggling his hands and feet cute to us but strange to other people. Seeing an educational physcologist in January. Dont seem concerned like I am at not talking or doing normal things kids his age do as children, babies we are programmed to say and do things at certain times in our development with logan its so hard to teach him anything and we as parents feel useless. Is there techniks we can use to help him along and or help we could get logan to try can develop him for starting pre school.

Sorry for waffling on, any ideas and useful suggestions or own experiences of symptoms like logans will be greatly appreciated.

Thanks: Happy New Year

You have obviously had some advice from experts, and have had some involvement. Are you still getting support from these? Have you seen a paed? In my area there is an early years specialist service, parents can self refer if they have concerns and they do assessment, link with other professionals and offer some 1-2-1 support in pre-school and give advice to pre-school and nursery and help with transition to school. I'm in the midlands and there are these services in my area. We are currently accessing this support whilst waiting for an assessment of DS2.

Thanks nice to see people getting help he is under a lot of specialist ot, special tots group every thurs. There seems to be no real urgency and he is nit really progressing at all. Was suppose to have portege which is intense one to one play but that has been cut

A lot of people on here report that there child was initially diagnosed with global development delay, and then as the child gets older they get a more specific diagnosis.

I'm not sure why there is no urgency from the professionals - but you are going to have to be more proactive yourself. Find out everything you can and work out whay you think the best thing to do for your child is.

My child was initially diagnosed with mild development delay - but this was (much) later changed to ASD (Autistic Spectrum Disorder).

Unfortunately from the symptoms you describe there could be a number of underlying problems. I would research the symptoms that concern you the most, and see what the most effective treatmet for that symptom is, and then work out how you can provide that treatment...

Hiya,

Sorry to hear about your worries. I agree with those that say you really need to take responsibility for his development yourself. Not saying you aren't doing, but I think too many of us put blind faith in the 'professionals' sorting it all when actually unfortunately that is the least effective way. They are too slow, too infrequent, too standardised in their approach.

So, where to start?

Well first you have to remember that your lovely ds has a developmental DELAY, not a developmental HALT, so that is really positivie. It means he can and will learn and may even catch up with his peers to some extent. It is important to have the highest expectations because if you, as his parent don't then who will? Also, plenty of research has shown that the children of parents with the highest expectations do much better, even if they don't quite meet the expectations (harsh, but worth it).

So, find or collect a developmental curriculum of some kind (I'll post a link to one or two in a moment) and identify for yourself some of the things that he should be doing, and then focus on teaching him those. Post on here for advice about strategies and research elsewhere, then tick them off and do the next ones.

Evaluate carefully every type of professional help. Question them. Aim to get from every decent professional, not 1:1 time for your ds, but 1:1 time for YOU to pick their brains and find out as much as you can about a particular element you are worried about and strategies for working on them.

Above all, learn to be and feel empowered to make a difference for your ds, and to do it NOW while his brain is still developing. It's a heck of a burden to shoulder as his mother, but it should also gives you some hope for his future.

hth

Oh, and if you start with strategies usually recommended for children with ASD, that is generally a good place to start for all children with developmental delays.

You might want to get or read Hannen 'More than Words', expensive but easy to read and worth it.

Thanks for all the brill advice will start on it, want him to do well and go to normal school. Will look at that book as a starting point

Hi malfranco. Agree with everything from diet, Indigo and Star. ONe word of warning. Don't be too ready to tell the educational psychologist you want your little one to go to normal school. Most people on these boards have (at best) mixed experiences of 'normal schools' for children who need a little extra help. The council would probably LOVE to dump your gorgeous son at the back of a class of 30 children, so that the teacher can ignore him. A particularly good council might arrange some intermittent support from an untrained (and cheap) teaching assistant.

Alternatively, tell the educational psychologist now that you want him to go to a VERY expensive, privately run, special school which is well out of the area. And pay for the transport. You'll need to do some research to find one that sounds plausible. This will focus their minds into trying to arrange a decent local placement with continued occupational therapy, speech therapy, physio etc. This should all be written up in a legally binding document called a statement. At the last part of that stage, start pushing for a mainstream school.

Hi - my ds has severe gdd. He has regular speech & language, occupational and physio- therapy at a child development unit. The therapists do lots of work and exercises with him but my dh and I don't always understand why they are doing them and what they are hoping to achieve - when we ask the answer is usually because that's what children are supposed to do and if I ask for specific things to do at home I'm often told 'oh I'm sure you're doing just fine' Anyway after reading threads here I bought some great books and they've helped me understand so much and do so much more at home - we've completely rethought all the toys we offer ds and the things we do with him - I'll post the names of the books tomorrow (need sleep while ds2 is asleep :) )

And agree with all that star has said

Will get a copy of the more than words book. When I asked if ds was asd they said it was too young to know thought that answer was a cop out. He obviously has a lot of the symptoms that cone with asd, hand and arm flapping feet wriggling and also does this thing were he lays on his tummy and wriggles his bum and licks the floor. Also screams when he is excited by the tv. Wonder if I should ask for a second opinion. Surely knowing what he has is the bases for treating what he has

Obviously has stimming issues, does not talk at all. Finally starting to walk at 28mths little steps not full walking yet.

Does sound like it could be ASD. You are right 'too young to tell' is a cop out Plenty of kids get diagnosed with Autism at 2.

However, while fighting to get a diagnosis, don't get so caught up in that that you stop doing what you should be doing - which is helping him with his symptoms.

Whatever his dx happens to be, you know you need to work on talking, walking etc. Now I agree a diagnosis helps hugely. But assume it's going to take another year to get, then start working out what you should be doing tdoay without a diagnsois.

Because a diagnosis likes ASD doesn't bring much with it. It's not like there's a special magic pill they only give to kids with a diagnosis of ASD. No, once you have the diagnosis you'll be pretty much in the same position you are now - having to determine what he needs, and having to fight for it.

Good luck.

Was just about to write was indigo wrote - a dx will give you a reason for his symptoms and help plan the future. But, you already know the symptoms so you can work on these already!

Books I found of help are - small steps forward, Sarah Newman, the child with special needs, Stanley Greenspan and it takes two to talk by hanen. Ask your OT if she has a copy of any of these you could borrow before you go out and buy!