How to best help developmental delay - need wise mn advice!

[hanbee]

Hi everyone

My lovely DS, 2.9 yrs, has general developmental delay, described as significant motor delay and speech delay. He is seen twice a year by dev. Paed. Who is going to refer for investigations in the autumn if he hasn't made significant progress.

He is awaiting physio appointment. He has salt starting next week as is just finishing a makaton group class. He has portage starting in September but we've been told he will only get it until January as then he is eligible for 15 hours at preschool. He starts preschool in September two mornings a week and so far the support he'll get there looks promising.

My question is: is there anything more I could be going with him to help him. We do as much learning at home as we can. Go to a few toddler groups both SN and not. I'm sure there are lots of possibilities that wiser more experienced Mumsnetters will know of!

I'd be inclined to take him swimming as often as you can manage it?

Hiding small toys in theraputty for him to pick out would build up strength in his fingers and he may find it fun! If you can't get theraputty or he finds it too hard to manipulate you could use playdough instead.

Singing songs (apologies if you already do this). There are some good Tumble Tots CD's about. Some of them have the words to the songs included with them (which always makes it easier) plus lots of actions are involved - again good for building up motor skills.

Thanks for all the ideas. I'd never heard of theraputty so I will look it up on the Internet. Have avoided playdough so far as he still mouths everything. I'll make my own and make sure it's extra grim tasting perhaps?!

We already do lots of singing and as much socialising as we can so I'll continue with that. Would love to swim regularly but as I have DS2 (9months) I need another person with me which isn't always possible.

ASD has never been mentioned but the only thing that has been and that was v much in passing is dyspraxia and verbal/oral dyspraxia. I wasn't sure if was mentioned in relation to him or just in passing as an example. He is delayed in all areas but met the usual milestones in terms of pointing, waving, joint attention etc. He sat unsupported at 9 months, crawled at 13 months and walked at 23 months. He has used a number of words but sometimes once and then I don't hear them again. He has 3 used regularly: dada, nang-nang (food) and car, and about 5 signs.

He's going to a great nursery/preschool in September, our local school doesn't have attached nursery. I would like him to go to our village school if it's the best option for him but I'm open minded about that at the moment!

I always recommend this book child with special needs as it has lots of practical ideas and encouragement whatever the dx. My son sounds similar at that age and I wished we hadn't spent so much time waiting for around for x and y therapy - it sometimes never came and even when it did would often involve just giving us photocopied sheets.

Agree with swimming, softplay (with other toddlers if you can face it), sand, swings, a trampoline. And lots of books and music -rhymes, cuddles and tickling - so really just the same as any 2 year old but perhaps more one to one input is needed.

Also makes sure you have time for yourself and realise that it is a marathon and not a sprint. It is all too easy for parents to burn out from trying to do too much and then feeling guilty. We all have days when we put cbeebies on for 3 hours!!!

portage?
when you say significant motor delay, can you explain a bit more? he seems to have met most of the major gross motor milestones, albeit later than normal? what is his muscle tone like? is it gross or fine motor that is the biggest issue?
fwiw, dd2 made most of her major developmental strides around three - it was certainly the year that her speech developed the most. are nursery already training in makaton ready for start? there isn't a reason to delay placement btw - dd2 had a two sessions a week nursery place from her first birthday although was probably more physically delayed. they were v good. she had portage in addition. most toy librarys will have free sn membership too, and have brilliant sn sections. you can borrow all the sn toys that are great for kids with motor difficutlies and work on loads of developmental skills yourself.

what does the paed say about causation/ dx? usually by the late twos they have a pretty good idea whether they are looking at cp or looking for a genetic link, or whether they suspect a less well defined cause (as/ asd etc). they are sometimes reluctant to give parents clues as to their thoughts though... and of course they like to hedge their bets in mildish cases like this as there is still a chance that kids will catch up! (and they won't have to do the difficult discussion and dx bit)

he sounds as though he's doing really well though - gross motor development seems to have been in the right order etc although a bit slow - and the fact that he has linked some signs etc is also a great sign. five is pretty good - dd2's makaton was like reading scribble and she was v slow to pick it up, but her speech came on quite quickly once it started, and she has an above average vocab now. the fact he is mouthing everything might be a pita but is also a great sign in the early days - less so when he's older so i would just get hold of the usual non toxic play dough and do as much as you can - it is one of the best ways to improve fine motor for littlies there is. lots of pegs too

gym ball if you are still worried about core stability (again, not sure what the motor difficulties are - it might not be appropriate) and i do echo trampoline dd2 used a trampoline way before she walk, or even stand unaided. the little ones with bars (mini jumper thingys) might be good. dd2 just used a full size trampoline obv with a net (she had older siblings) and started with just crawloing around on it and sitting whilst she was bounced. it was a great way of tracking improvement year by year as well - we used to say 'wow, last year she couldn't do that!')

Watching thread with interest.

Ds is one with developmental delay and low muscle tone. He has just started sitting in the last 2 weeks, which has already made a huge difference to his development (he has started showing an interest in things!)

He has been referred for portage, and is starting at a sn playgroup in Sept. He also has physio and SALT.

I seem to spend so much time, worrying about him and taking him to appointments, that I sometimes forget to just enjoy him. I think his best 'therapy' at the moment is having his sisters home all day for the holidays (this is what I am telling myself as I am too knackered to do anything else!)

Thanks for such an amazing response to my post! I've contacted our local swimming pool and the swimming coordinator is ringing me back to discuss.

Thanks for the book recommendation, looks v interesting.

Re dx; we've not been given any indication of their thoughts. He had a blood test at 18 months for muscular dystrophy which was negative. I think they will prob do MRI and bloods in the autumn (I guess this is related to cp or genetic?) but have said that often a cause is never found. The "significant" bit was paediatricians words.

He does seem to meet milestones just in his own time. His walking is still v wobbly and he often falls over, although improving month on month. He can jump without holding on but has only just started to climb onto the sofa. He can't yet ride a push along car but can jump well on his mini trampoline. I've been told his muscle tone is normal despite his open mouthed posture and dribbling.

He is just starting to feed himself with a spoon, it took ages to get the scooping motion, and he has just started trying to use crayons etc. So fine motor skills are behind too.

His nursery leader has done the Hanen More than words course and half the staff have trained in makaton. The SENCO said she couldn't have recommended a better nursery for him. Within a week of us putting his name down the nursery leader had rung the SALT to ask if they should do any other training to help him so I'm currently confident they'll be proactive.

He's on the list for portage and it will probably start in September but in our area they take it away when the child becomes eligible for the 15 hours a week free childcare so he will only get 1 term which is a bit pants.

His understanding is q good and he can follow simple instructions like, come here, sit down, fetch your shoes ( just brings 1 ), and even come and lie down so I can change your nappy.

Thanks for all the great advice.

I forgot, he loves action songs and can do actions for wind the bobbin up, the wheels on the bus, and head shoulders knees and toes! The actions are a bit hit and miss (sometimes does them sometimes not!) and he favours some and ignores others but I think this has helped him learn signing.

Hi there
Our son was born prematurely and had the developmental delay diagnosis until the age of 6 (when he finally received more accurate diagnoses). We were told that premies often have developmental delay and "they catch up naturally with time". That advice was misguided and we lost of a lot of time early in his life when we could have started remediation. It was only explained to us 6 months ago when we finally paid for a private assessment that a developmental delay diagnosis has little meaning and it's the one they give when a child is too young to give other diagnoses. I have to say that I'm very disappointed we lost all that time and I wished I would have pushed continuously, or gone private, much earlier to find out what his actual issues were, so that we could have started the right inteventions sooner.

hello all, I have been reading your talk and can understand with great emphathy becaus i too have a children who is developmentally delay because he was born early at 24 premauture at birth - this led to severe delay in his development and now he is 9 yrs old and still finds fine motor(handriting) and moter skills (riding a bke, self-care -toileting dressing difficulty).

I strongly advice that you continue talking to your child and lots of praises through gester -smiling noding head because your child is reading your body and facail expressions - and, is likely to respond through visual and verbal sounds. I found my son, also delayed in his speech but, he started to talk ,it was a shock because he knew more that he showed.

I know it is hardwork for a parent ith special needs but as time go's on you will find a rountine and it will become part of a smooth daily routine. Also don't feel gulity or compare you child with others. Your child is an individual who will develope in their on time. And as been said already, enjoy the time you spend with your child. Your child wwill get there and catch up as my child is 9yr ansd finial has cought up but it as a long delay and lots of patience and time but it has payed off as he is doing well at school.

I have spend lots of time doing educational activities so feel free to ask me anything. I'll try to help ... take care all.
I