15 month old with GDD

[GDDmum]

Hello - hoping for some advice really, as I feel a little clueless.

My 15 month old has a global development delay, he started sitting at 11 months and doesn’t yet crawl or say any words at all. He babbles and is very sociable, interactive and quite mobile as he rolls about. But his fine motor is quite behind and there does seem to be a disconnect with his arms and organisation of his body generally. He does seem a bit slow to pick up new skills, for example he can’t get himself into sitting and we’ve been working on it for months now. He’s on the list for genetic testing but I understand this may not give us any definitive answers. 

His physio and OT say he’s doing really well, but his latest paediatrician poured cold water on us a bit as he said when delays are picked up so young, the gap will often widen as they get older. I suppose I don’t know what to expect and can only think of worst case scenarios. 

Does anyone know if GDD always becomes a learning difficulty as they grow older? Any stories would be amazing to hear as I’m just stuck in limbo and finding it all quite hard.

Thanks

[Suzzichka]

whereabouts are you? The earlier you can get some additional support from a parent and child class, the better. Have a look at the PACE centre in Aylesbury website. Also look at action for cerebral palsy website as they stress how important it is to get input early. It’s tough and there’s no getting away from it but our son has GDD and he makes me smile every day. He’s 20 now. Private message me if you want to chat and I’ll send you my number. X

[Lindypops56]

Hi there

I’m a retired health visitor and the mum of a now adult who was diagnosed with GDD as a baby. Every journey is different as will be the degree of difficulty your child encounters. All I can advise is that you bang on every door you can to get as much help and support as you need.

My own son is now 33 and has had Learning disability all his life. He needed intensive speech and language support OT physio etc but he now leads a happy and fulfilling life. He lives in supported accommodation as he is not able to live alone but also wanted to have a degree of independence. He was diagnosed with autism 4 years ago which came as no surprise to us at all. I suspect a diagnosis would have been made much sooner had he been a child now.

I hope you get all the help and support you need and wish you all the very best.

[ulrichburke]

Dear GDDmum.

That's MEEE!! I've got Cerebral Palsy, Hydrocephalus, Dyspraxia and Asperger's. I couldn't really talk till I was about 5 - have problems with verbal communication now, though my fingers talk fine. Words seem to hit my fingers easier than my mouth, nobody's ever worked out why. Im 54 now and not BAD at verbal - but sure am not GOOD at it (Asperger's alert!)

As far as fine motor goes - that's Dyspraxia. I got around that by being taught T'ai Chi - or a version of it - by a lovely old Oriental guy who used to put a hat out for money, in the shopping street where I lived in London. I was practicing walking behind my wheelchair, he suddenly sat in it. 'Old fat man need rest. You push!' And he taught me to be Really Aware of every movement I was doing, to concentrate on each movement in turn till I'd achieved it, then to go onto the next movement. To break down every overall movement into a series of movements and concentrate on each. After awhile - few months with me - I got so I was doing it automatically. But fine-motor things - like tying shoelaces - are a bit of a nightmare still so I use velcro shoes. And if I get too fast, then my control goes altogether and I make myself stop and concentrate on each. Segement. Of. The. Motion. In. Turn. Till I've achieved the movement's goal.

Maybe you try doing a few everyday things yourself and see how many of them have the same movements in common - like picking something up is always either chopsticks - bringing two fingers together against something - or sushi - wrapping your hand around something like wrappingfish in rice. Then get your kid to practice Chopsticks and Sushi and if he's having problems, gauge which of the two will be the better basic movement and say 'Chopsticks!' or 'Sushi!' to him. I bet after awhile he'll be trying out the two basic movements for himself and getting the hang of when to use which.

Sitting in the middle of the floor is NOT easy - trust me on this! It takes a lot of balance which, with anything like Dyspraxia, doesn't come naturally (I've never been brilliant at it.) One suggestion might be to put a 'wall' - a plank held upright, or anything similar - behind him so he 'gets' what sitting upright feels like. Again it's the T'ai Chi thing - once you know what it feels like, you know what to aim for and you can practice doing it. But I'm betting right now rolling about's a game that gets Mom's attention and he's having fun doing it! I know I sure did! With us, balance isn't automatic - it's a Learned Skill. Like you couldn't drive a car the first time you sat behind the wheel. Maybe - all these ideas are 'maybes' cos I'm just talking from personal experience and memories - sit him on a bed and put a nice treat in front of him. Help him sit up the first time and stroke your hand down his back so he 'feels' what sitting upright feels like. As long as he's upright, he can reach the treat - and if he falls over sideways, he won't hurt himself. Encourage him to sit back up (maybe 'UP! We go' or something) and do the back-stroking thing again so he knows he IS upright. After awhile it should start becoming a Known Skill, then you can just applaud when he does it.

Words - that's a Not Easy one, because people speak quickly. And they want to listen quickly. So if you're having to concentrate on mouth movements, you notice their impatience, try too hard to speak fast and develop the Stammer from God! Jeez, I've still got that now in some situations. I can NOT get the syllables out, sometimes I can't even remember what the syllables ARE! THAT'S a difficult one to explain - I can picture what I want to say but seeing all those people looking at me impatiently (or only one, same difference!) gives me a kinda Total Stage Fright and I canNOT remember what syllables to say to make the words I can hear in my head. Can TYPE them, for sure. But SAYING them.....!! That's the kinda thing that gets me jeered at LOADS and I get even worse then and can't talk at all. Have to slink away and get myself back together.

Talk to him. Be encouraging - but not pressuring him to talk back. Help him to understand everyday things, then try him out with them so you know he understands them. When he's ready to talk back, he will. If he stammers, try saying the word slowly with him so he can follow your mouth movements and HOW you say it. Mouth movements for words are not automatic with us. Going back to the driving analogy, you sit there watching the instructor turning the key, pressing pedals, indicators, gearstick, steering wheel, co-ordinating all those things and you're going 'WT jumping F!?!' in the seat next to him! Then he shows it all to you slowly and, MAYBE, things start becoming clearer. You can move out of the parking bay. Doesn't mean you can drive down the road at 30mph - just that you can move out of the parking bay! I don't drive at all because I don't trust myself past 30mph, I'd crash. Maybe some things that are easy/obvious to you will always be like that to him - set his goals at what his maximum is AT THAT MOMENT, not at what yours is/was, or what you think his should be. Every time he hits maximum potential AT THAT MOMENT regularly, try moving the bar a tiny bit higher. Not too much, or it causes frustration, a sense of failure and you don't want to do it any more. Just a tiny bit. You have to judge what the 'tiny bit' is from what you're watching him achieving.

With me - and I can only talk from a personal viewpoint - the problem wasn't HEARING the word, it was spotting what the lips were doing to MAKE that sound. Break words into phonetics. Forget words at first, get him saying the phonetics. (For instance MOTHER is MUH THUH) Once he's got a pile of basic phonetics, hopefully when he hears a word with those phonetics IN, he'll know how to follow your lip movements when you slow the word down enough for him to see them. Worked for me but I couldn't handwrite till I was about 4 - not properly, too much fine-motor needed - and I never got fast enough in school to note-take properly. And I couldn't talk till about then either, not at an 'acceptable speed' - I could SAY words but only very, very slowly. If I tried to speed up, I hit stammer central and stayed there! Of course all the lovely local kids (NOT!!!) had a field day with that on that one.

I'm 54 now and they still do! The Make Chris Talk Fast Game!

Basically with us, everything's jigsaw puzzles. We always need help putting the bits together to make the picture, showing us the lid of the box doesn't always help us. Once we can do it the first time, we can remember and build on that (personal experience again.) But learning 'basics' isn't as automatic for us as it is for you neurotypicals. We're Mowglis, learning how to be wolves. We need our Rakshas!

Hope the above helps.

Contact me if I can help any more (or to yell at me if nothing I've said works!)

Yours respectfully

Chris.

[oddfish7]

So there are a couple of really helpful replies already. You are probably feeling that you are under huge pressure and I know from experience with my daughter (now 30+) that it's not easy.

So important to take pride and pleasure in what your son can do. I too have found consultants sometimes quite dismissive (even rude), so hold on to the positives that you know about your child.

A couple of suggestions from my own experience - has your son had a hearing check ? Hearing loss/interference of any kind can really hold up language development. You may have to fight for it and insist.

Also, I found a treasure basket to be very helpful in encouraging interest and exploration.

You can find out more here

earlyimpactlearning.com/wha...

It's fairly easy to put together from things you will have at home. You don't need to buy anything.

Definitely insist on seeing the child development team if there is one in your Health Authority.

Don't be put off learning some Makaton signing around things your son responds to; it can really help. My daughter can speak, but in Makaton she is an expert.

I hope it gets better for you. try to be kind to yourself and focus on the things your son is learning to do.

Best wishes,

[Szofia]

Hi, Have you heard about Conductive Education? This is a holistic educational approach helping babies, children and adults. Research it and if you like the method you can find a centre nearby you. If you need any further info please contact me. Good luck!

[Mumof2_1withGDD]

My daughter is 13years old. She didn’t walk until 22 months and didn’t start talking until she was past 2. She suffered with ear infections and had glue-ear so this is what the health visitor and go initially put her speech delay down to, despite having grommets fitted her speech didn’t improve. She was diagnosed with GDD when she was 3.

The gap between her and her peers became more noticeable once she got to year 1 and school. I had already been successful in getting her a statement of special education needs (now EHCP) and so she had a 1:1 in mainstream school. I decided on a dual placement during Y2 as my daughter has always been very sociable and it was important for us to support this strength. However, we decided to move her full time to a special school in Y3 as they had the right training and support including using Makaton as a communication tool.

GDD is so broad, no one will be able to give you a direct answer on what to expect. It all depends on your child and their needs. My daughter has always had speech and language difficulties, but she is understood even by people that don’t know her now (this wasn’t the case a few years ago). She reads basic texts, but really struggles with numbers. She is super sociable and very happy, but can be too trusting and not aware of dangers.

She can’t ride a 2-wheeler bike, but can surf YouTube, Facebook and ask Alexa to play her favourite tunes!

Get as much help from all agencies as you can and try to get an EHCP so that support will be available for school.