Could people with older children share expereinces please - 2.8 GDD

[Firsttimer7259]

Ive been on these boards a while and I guess am having another bout of panic about the future. Our girl has GDD and at 2.8 is really about a year old for walking, Her other skills lag behind that. She occasionally makes sounds with intent to communicate but really we are still working on copying and getting her to vocalise or use gestures. Her fine motor skills and playng is less developed than the average 12 month old I think. No putting in, no building, no shape sorting, mark making etc. She has problems with processing sensory input, but other than that tests etc come back clear.

She has been making progress but I have had one of those weeks when I realise just how different she is. Anyone had a child anything like this who caught up or who didnt? What are they like now? How did you cope? I so badly want to play with her more, sing a song together, paint, have her ask me a question - its sometimes just so hard and I wonder if we will ever have that together.

My DS does not have GDD, but does have ASD.

I would say: look into ABA. I wish I had done so when he was 2.8 but spent another year plus dithering and hoping he would catch up.

Also research PECS as a simpler thing you can actually do yourself at home to get some communication going.

Oh and he's 4.5 now and we sing together after nearly 3 months of ABA. Nothing like it beforehand.

DD is 8, was very similar to this, didn't crawl till over 12months, walked at 18 months but all painfully slow. Didn't utter a single word until over 3. Still very delayed with everything and so different to your average 8 year old. Started in mainstream school and coped well but was really not the best place for her, now thriving in a special school. Yes she is delayed withe everything, has never caught up on something's and doubt she ever will. BUT, lives in her own little happy world, has a very innocent look on life, is extremely happy, we can now finally sing songs with her and build blocks etc - just all happens years after everyone else did it. Have good days and bad days, have days when you cope and days when you don't. Best thing is to not sit back in the hope she will catch up and waste time waiting, get her seen by a paediatrician, educational psychologist, speech therapist, occupational therapist etc, won't be easy but you must start getting her seen by as many people as possible to getting her the support and assessments needed. Again this won't be easy - perseverance and nerves of steel are useful. It's hard work and very challenging. Having GDD is an unknown, I worry so much about the future and wish I had a crystal ball to know what will happen, but so hard to predict. The best thing is that when they do achieve something that comes so naturally to other children, it does feel like the biggest achievement ever so does then becomes far more rewarding. Xx

Thanks for your replies. We have been doing ABA since July - without much discernible effect sadly. We are also plugged into sessions with OT, physio, SALT. Will be assessed by Ed Psych on Monday and I am hoping we will get a place at an SN nursery at least part time. I think MS would be totally overwhelming. She is a baby still in most respects and progress is painfully slow. We had a curriculum evening at the nursery yesterday and I have just realised that her age peers will be pre-schoolers soon while we are waiting for her to turn into a toddler.
Some days are very hard - I would so much like to be able to play more with her and communicate more.

My daughter also has GDD. She sat at about 12 months, walked at 2.2 and I can't really remember with speech . She had a squint which was corrected surgically and lots of glue ear and grommets etc.

She is now 14 and would be described as having severe learning difficulties. She attends a MLD special school. Her speech is unclear at times but she never stops talking! She is happy, loud and full of life. She lives in the moment and has good friends at school.

I think if I had had a crystal ball when she was your daughter's age and could have seen her as she is now I would have been very comforted. She did make progress but much, much more slowly than other children but she still continues to learn and develop now. The teen years are a new challenge along with puberty but she is managing really well.

I always tried to get as much help and support as possible even though at times it was completely overwhelming in terms of appointments and visits.

my ds was initially dx's with GDD.
Rolled over at a yr old, walked at about 2 yrs was still mostly silent at 4yrs, never showed any interst in communicating was a silent baby, never babbled never made an animal noise etc.

He did split MS&SN nursery. MS primary with 1 to 1 support, we are fortunate to have a choice of wonderful inclusive small village primarys that we were able to choose from.
He will be going to SN secondary.
His dx was changed from GDD to Autism, cerebral palsy & learning difficulties.
He is 10 & he can hold a conversation (when he wants to) can write his name, count & do basic addition. Make his own breakfast (toast) go to the toilet on his own (at home & school) beat his dad on the xbox, fight with his brother, sulk like a moody preteen, make us all laugh with his wicked sense of humour, tidy his bedroom, put the rubbish out Is actually pretty able within our own home.
The gap between him & his peers ahs widened & he is very obviously a disabled child now, He uses a wheelchair for everything other than short distances, will always be reliant on an adult & I'm guessing wont be moving out at 18 but thats good.. what would i do anyway

All in all he has far exceeding everyones expectations & I wouldnt swap a bit of him

Hi firsttimer, have been staying off the diagnosis board recently whilst I bury my head in the sand about DS but wanted to add my tuppence here as I still quietly worry incessantly about what the future holds for him. You may remember that my DS seems to be following a very similar development route as your DD.

I can't seem to find many people with GDD as the diagnosis but I was speaking to a lady who has helped us with sleep issues. She has had two children with severe delays, one is now at university whilst the other now has a diagnosis of autism and still requires a lot of therapy and additional input. Her child at university did require vast amounts of therapy as a child. She describes him as having grown out if it.

Sorry if I should have kept my tuppence to myself but I like to think this info keeps me positive as I am still very much trying to assimilate where we are at and where we might be going.

It's hard to not know where this journey is going.

Hi My ds was given the diagnosis of GDD from nursery as he was clearly behind in many ways but he started normal school and had full one-to-one support, receiving a statement of special needs at the end of the reception year. I remember watching other children pouring drinks for themselves so expertly and wondering whether ds would ever be able to do that. A lot of anxiety about the future and confusion about what best to do. However at age 7 he suddenly showed an incredible ability to know what day of the week any date in the year was (eg someone would say their birthday was such and such date and he'd say 'That's a Monday')- my hair stood on end as I checked the calendar and found he was right every time. Then I realised it wasn't Global DD but spikes of ability and troughs of inability. He was finally diagnosed as mildly autistic (Aspergers Syndrome although that term is going out of use) when nearly 9 and it was a great relief. I've found the parental support and all the resources for ASD diagnosis hugely helpful. Ds is happy, thriving and can now fill his cup with milk without spilling it everywhere - lots of progress in every area, but still delayed compared to peers. I think I've learned to celebrate him as he is and not worry about comparisons. It takes a while to have the confidence to do that though. Hope this helps you in your journey - look out for ways to enjoy your dd where she is now and not where she might be if things were different. Easy to say I know...

Oh thank you all so much. Nice to hear some positive stories too (no need to keep that back at all) even tho I generally live with Reality FM on and am preparing for Special School etc. Some days I am just petrified of what the future holds and whether we will be able to manage with her. She is lvoely just getting big and heavy and thats scary when she still needs so much help and carrying

MY DS2 was dx with global delay ..sat at 1, walked (wobbily) at 2.5, no speech til 4. Dx ASD as well a few years later. Special school..

He's now 15, talks the hind leg off a horse, is friendly , can read, write a bit and is learning independence skills. He integrates with mainstream for some things (maths mostly). Like Teatime's son, mine has peaks of ability and some deep troughs too (at 15 he can't tie his shoes, carry a drink, believes in father Xmas, but can tell you the box office financial takings for every major film shown this year!)

Semi independence is what we are aiming for. But if someone had told me this when he was 4 years old I'd have laughed (or sobbed!)

Don't look too far ahead , because our children always like to surprise us!

My DD has GDD and ASD among other things . At age 3 she was around the 15-18 month age and at 4 and 1/2 now she is not even at 2 year old level . Very happy , beautiful and lively :)
Concentrate on now not the future otherwise you drive yourself mad x