Can anyone give me some hope? - about GDD and what it may mean

[Firsttimer7259]

My daughter has a Global Developmental Delay. Shes 21 months old and maybe at the stage of a one year old -her language is probably further behind than that. She is making progress still, but we have had strange MRI and blood test results. The doctors are now checking with a series of tests whether she has a peroxisomal disorder. We are waiting for results.

In the meantime I am getting more and more convinced that this is it. It would fit with how she presents - shes late, but shows no disordered behaviour. Although she would have a mild form these disorders are fatal.

Can anyone give me hope that it could be something else? Did you have a child that had developmental delays across the board that just caught up. Please only post if its somewhere in the same ballpark as my girl. So a child who at almost 2 was very behind.

Basically advice I got from peadiatritions , Dd's SALT, and whatever book I could find on special needs education /play therapy. One of my favorites is "games, ideas and activities for Early Years Phonics, by gill cousin and Lynn cousins ," .

It's a great book ,although not really a special needs aimed one , it has loads of ideas on how to get a child(ren) to engage in activities .

One of the best things for a speech delayed child is a simple tube of bubbles.

They have to learn to use some of the muscles that help with speech to be able to blow bubbles....and once they master. Bubble blowing , shouting pop as they pop the bubble is great fun ( and they don't know they're learning , it's just a great game to a small child )

Another good "game" dd used to love was blow football.

You don't need any fancy stuff ...just a straw for everyone who's playing , and a little bit of scrunched up paper . Blow the "ball " around using the straws .

Again it excerses facial muscles and uses breath control which we all use when speaking . Again its teaching in a fun way . Once dd got good at shifting the ball we would shout goal ! ...eventually she would too .

(only thing ,keep some detol wipes handy ...it can get a bit spitty )

Hello Firsttimer.

I have no advice, as you know I am in a similar position to you, with ds, so I just wanted to show a bit of support!

I also wanted to say thankyou to Droves, I am going to take note of the advice in your posts, it is fantastic.

I just wanted to say that at 21months my DS3 was referred to a paediatrician for the first time as he couldn't weight-bare and did not say a single word (and did not use any gestures). I knew he could hear ok as he could sing a lot of tunes. When he saw the paed at 22 months, she said he had "general delays", but was most concerned about his mobility. He's just 3 now and can walk unaided and is learning to run. I have been amazed by his physical progress in the last few months (didn't walk till 2.5). At 20 months, I would say he hardly understood anything. I noticed that he didn't pick up language like my other 2 children and just looked blankly if you asked him a simple question like "where's the train?". Now, he is still under the SALT and is starting to put 2 words together, so probably still about a year behind with his expressive language. However, I think he does understand a lot more than he can say and is still progressing and wanting to acquire words. Some skills he has caught up with though (fine motor skills and cognitive skills like shape recognition). I am confident that he will catch up with the gross motor skills eventually too. We think he will eventually be diagnosed with ASD, but this time last year, I was convinced he would never walk or talk so I am pleased with with his progress.

I have found enforcing language the most difficult thing over the last 12 months, particularly when he didn't say or understand anything. I spent ages with him naming each familiar object around him. When he was in his highchair, I used to pick a couple of things that he could see such as the washing machine and the kettle and point to them and just keep repeating what they were. Eventually, I would ask "where is the washing machine?" and one day he pointed to it. We progressed from there adding one more noun each time he grasped something. I still have to tell him what new things are called but he picks words up much more quickly now.

my son is 5 non verbal still in nappys had lots of tests done on the list for cgh array ,ddd test

My development disabled son now 18 yrs old, studying for driver test, he still drives me crazy we go church helps a lot for Gods gracevand mercy patience ,,the youth group program great for all kids. My son has learning disabilities and i just give him time to process question and dont yell at him to hurry, i only ask 1 or 2 commade at a time too many overwhelms him. Hes a great kud i give him space there are times his frustrated still i watch for transition, overstimulates or too many demands, it helps be aware, also read parent books, go parenting classes. All helps. He has friends play xbox basetball, walks store. I try find teaching in every moment gently..God bless

@tiredmelly hello, hope this msge finds you, I know it’s been many years but how is your dd doing now? How is his progression getting on? I’m in the same place you were back then

@Firsttimer7259 hi there, how is your dd doing, how has her profession come along after good few years? Would love to know how she’s getting on

@zen1 just ready your ds progress wow amazing, so pleased for you. How is he doing now, how old is he? My dd is 15m and no sign on crawling or walking, and no sign of communication what so ever, there’s a lack of understanding. It’s so worrying don’t know what the future holds for her how she will be 😢

@Sabu1234

Hi, I’m not one of the original posters but I’ve read your messages the last couple of days on different threads and wanted to reply as I know from previous experience you pin your hope on other people’s success stories and sometimes they don’t reply (as they may not post anymore etc especially if it’s been years since the original post) so don’t want you to be left unanswered x

My own ds was diagnosed with development delay when he had just turned 2, he was very delayed at this point, that changed to an autism diagnosis when he was 3 and a half.

He was totally in his own world, didn’t point, clap, wave, didn’t answer his name, he would just sit and spin wheels on toys and showed zero interaction with us, he didn’t even realise anyone else was in the room with him almost, couldn’t communicate anything with us, his development was put at a 8-12 month old level when he was 3 after some assessments.

He’s 7 next month.

He can talk now - in fact he never EVER shuts his gob he can read a little bit and write his name, he doesn’t wear nappies in the day anymore (but still wears them for bed) he goes to school but requires full time support and will be moving over to special school when a place becomes available.

He never understood a word I said to him until he was nearer 4 even instructions like ‘ds sit down’ but he does understand me now that’s improved a lot over the years.

Hope that gives you a bit of hope? No matter how much you won’t be able to see it now your dd will progress, it might not be at the same rate as others but she will make her own progress.

Happy to answer any questions you may have x

@danni0509 thank you so much for replying to me, as you noticed I’m so lost and reading searching constantly and leads me to old thread and in hope someone would reply.... wow your dd has made such amazing progress.... if you can remember how was he like around the age of 12-18m? Did he start salt did he need physio? I just don’t know where to start... so I’ve spoken to the hv and doc they’ve referred her for salt and physio etc... also see the paediatric... but if feels like such a long wait with the current situation... I feel I need to get things going, she’s only 15m but what can I do with her?

Hi @Sabu1234. It might be worth you looking at the Nurturing Neurodiversity YouTube channel. She also has a Facebook group where a lot of the parents have a younger child who is not diagnosed with anything but has developmental delays, so it's a very supportive place when you're in that horrible "limbo" phase and you don't know what is happening or what the future holds. If you like the videos then definitely check out the Facebook Group.

For example, this video shows her doing some activities with Dexter aged 2.5 and also some video of him when he was younger:

And a video on missing milestones:

Coming Home to Autism has also posted some old videos of her son's development:

And this one talks about some of the therapies they did early on:

Although both these are parents of autistic kids and I know you asked about GDD, autism can also be associated with late physical milestones (my daughter never crawled and didn't stand independently until she was something like 19-20 months, so quite behind: she's now 6 and can run, climb and ride a bike with the best of them: not saying this always happens but every child is different) - and even if your child is not autistic I think connecting with other parents whose kids are on a different path is still really helpful.