Global Developmental Delay diagnosis - how to cope

[mumstressoutmum]

Hi, my 19mo has been diagnosed with GDD. The early diagnosis is due to the fact he's so delayed.
Physically he's at about 11-12 months, which isn't too bad, but in all other ways, socially, motor skills etc are about 4-6 months, according to his paediatrician.
I'm really struggling to cope with how upset I am and how guilty I feel. I feel like I've done this to him by being a distant mother in the really early days when I suffered from PPD. I relied so heavily on distractions to help me just survive... things like TV, light up toys, just whatever kept him happy really as he was colicky and screamed constantly (I mean hours and hours). It was a horrendous time. Not just that, but I'm really worried about his future, if he'll ever catch up, what his life will look like. I'm worried that he'll later have more diagnosises, that it'll be worse than I thought, that the genetic testing might show something more serious.

Honestly, I'm devastated. He is so delayed and does so many things that I really doubt he'll ever be in the same developmental league as othet children his age, I anticipate long-term problems and I'm terrified.
Also, maybe being selfish here, but I feel like I'll never regain a life for myself either.

I don't know what the purpose of this is really. Maybe understanding, maybe someone has experience with GDD, I don't know.

I am sorry for the shock you had getting this news.

I taught a little boy with GDD in a mainstream school for a short period. He was in lower ability groupings for subjects that were streamed, but as I said, was in a mainstream class. Socially, he engaged well with his classmates and didn't really stand out from his peers. I still remember being really pleased with the progress he made in English and his imagination really taking off writing stories. I'm pretty certain he will have got through college and will get a job etc and have a nice life.

I know this is entirely anecdotal and possibly irrelevant, but I thought I'd mention it in case it gives you some comfort.

Sending you best wishes- be gentle with yourself, you're having to process a lot.

I am so sorry. I went through similar. My son was diagnosed with a genetic syndrome when he was 3 months old. It is honestly the hardest ying I have ever been through.

Honestly the best thing to do at the moment is have a good cry about it all. Get angry, eat your preferred sad food (chocolate, crisps etc) and mourn all the things you have lost.

I promise it will get better, but there will be tough times too.

You still have a brilliant little person who loves you but things won't be the way you expected. Mourn and then get to know your beautiful baby anew, with the knowledge that you now have.

When you are ready, it might be worth joining some parent groups with other parents with similar aged kids with disabilities.

Also, you are eligible to apply for disability living allowance. No one ever told me, so we didn't apply till my son was about 3! The money can be stuck in an account for later if you don't need it now but having dla gets you access to lots of other support services.

You will get through this and there is joy in parenting special kids.

Thank you both for your lovely replies.
It's comforting to hear that someone with GDD can have the potential to go into mainstream school, I mean I'm not going to place any expectations on my son but I am just trying to look at the bright side.
I really feel out of my depth, especially as I have absolutely no experience with special needs children or even adults. I still feel in denial to be honest, but I know it's just a reaction to bad news.

Can I ask what rate you got for DLA? I'm trying to figure out if I would be entitled to carers allowance.
I work part time in a really physical job, which is becoming detrimental to my son in the sense that I'm too exhausted to do anything after my weekend shifts. I guess if he does qualify for a medium rate DLA, and I get carers allowance, I can work less hours and focus on him and his development more. I promise I'm not just thinking money, just what is going to make life easier going forward...(this is how I cope with stress, spring into action and form a plan, lol)

Dla is a bit tricky when they are little because it is based on how much care they need over and above a normally developing child of the same age and obviously babies and toddlers need round the clock care anyway. I can't remember how much we were given initially but we were reassessed when my son was about 5 and we got middle rate care and lower rate mobility.

As far as I understand for middle rate you have to show you are providing over a certain number of hours per day of care and for higher rate there has to be overnight care too.

Carers allowance is not much and you are only allowed to earn £140 a week or it is taken away so probably not worth relying on.

Planning is good. I do that too 😊

Also. Don't quit or drop work without really thinking about it.

You need to make sure you prioritise doing things for yourself and having lots of breaks so that you can do the very best for your son when you are with him.

You can't be an amazing parent 24 7 it is not possible and you will get burnout . (Voice of experience).

It is very difficult. When my ds was diagnosed with a disability I started having panic attacks I was so distressed. However you will adjust and I think make peace with it. Please be reassured that this is nothing g to do with you and what you did or didn't do.

Let's take at face value your assumption that the GDD is due to your neglecting his development rather than something inbuilt.
My DD was diagnosed with GDD when she was taken into care at around a year old having been, let's say, insufficiently parented.
Changing the environment to FC and then us brought her on tremendously and she went through mainstream school (until Covid hit and other issues came to the fore).

Alternatively the GDD may be due to some disability not yet recognised. In which case this isn't your fault. Changing the environment will help stimulate and bring them on, but you probably won't beat the underlying issues if they are there.

Just do what you can, you can't do more.

Maybe look at the cerebra guide to claiming dla. You may be surprised at how much more help and support you do give in comparison to a ctypical child of his age. Also look into portage for your area. I am not sure what age they start but they do good work with children with developmental delays.

I’m so sorry you’re going through this.

GDD has a huge range to it. I’ve been a 1-2-1 to a child in mainstream school who needed support but then I also have a son originally diagnosed with GDD, who now, as an adult has a severe disability (due to the genetic diagnosis).

You have nothing to lose by applying for DLA, and although it will take time, may mean you have something practical to focus on.

Your health visitor should be able to help/advise on special needs groups in your area. You will find those parents have a wealth of experience and where you’ll find you get most of your help.

As a PP said, Portage is a great service and will help both your child and you.

It’s ok to be sad, angry, worried. This isn’t what you expected when you had a baby but try not to blame yourself.

That's great to hear she came on so well. Honestly, I don't know if it's that I was - being very honest - a burnt out and present but not all there parent for a while, or if it's something more serious underlying...I just don't know. My son has virtually no tv now, I am always engaged in his playtime and it hasn't made any difference, and he does have a lot of symptoms of fragile x syndrome...like the strabismus, repeated ear infections etc. But time will tell.
Thank you also 💕
And thank you to everyone else who left lovely comments.
It is definitely not what I envisioned, and it's brought more questions than answers really as there are so many reasons he could have GDD..so many outcomes, both good and bad from what I've read.
Still feeling really down and to top it all off poor baby has tonsillitis so it's really been a week from hell.

💕 I hope you are in a better place with it now. I have been like that all week. Just randomly sobbing and feeling heavy like I can hardly move. Frozen from shock and fear, literally.

Sending hugs from another GDD Mum. I'm 2 years in from my son's diagnosis and the grief still comes in waves. Day-to-day I don't really "see" my son's delays, he's just my boy and that's it. But whenever we have an appointment with a health professional, or he has a developmental assessment, or I see him mixing with other children his age and the gap is there plain to see, it hits me like a ton of bricks.

I was in the same boat as you, I had quite bad PND and was a 'present but not all there' parent. I blamed myself for a very long time, thinking if I played with him more, or took him to more classes or read different stories, things would have been different but the fact is, sometimes sh*t happens.

Do you have a good support network? If not I'd really suggest linking up with a SEN playgroup or something similar, ask your HV to signpost you. You need someone to walk alongside you. Also, remember to fill your own cup. You need to take care of yourself so you can take care of your baby. Action for Children offer respite holidays and see if your council has a carer's service. If they do, you might be able to access grants etc from them. Also look into Family Fund.

100% apply for DLA. If you don't need the money right now, you can put it away for your son when he is older. But by qualifying for DLA it will entitle you to many more services, discounts, therapies etc. So it really is worth it from an Admin point-of-view.

The last thing I would say is to contact Mind or another therapist service for yourself. There are so many emotions to work through when your child has a diagnosis and I really recommend having professional therapy to help you process it all. I had weekly talking therapy sessions with Mind for over a year and it was 100% free (I did make regular donations when I went back to work to show my appreciation). Mind also run a course called Mum's Matter for PND which I found really good.

Stay strong Mama! 💪

hi @mumstressoutmum . May I ask how is your son doing now?

Hello 👋
Oh my gosh things have changed so much. He was later diagnosed with ASD which really cleared a lot of things up. He does need a lot of care, developmentally in all areas he’s at 12-18 months now (he is 3 and a half). But…day by day I can see his receptive language building, he understands basic words/phrases like nappy, bath, milk, bed, hug, hold my hand. He knows his name now. Unfortunately the future is still uncertain, he is non-verbal but has started babbling a lot so is considered pre-verbal, but time will tell I guess. He is due to start special school next year. Despite all of this, it has actually got a lot easier with time, more understanding and more patience.
I’m not sure if you’re asking for yourself, maybe your little one has been diagnosed? Don’t be too disheartened by my response as it is kind of worst case scenario. So many kids in my son’s assessment unit who scored on the same level developmentally around the time of my post have gone on to speak & thrive in mainstream nursery. And going to all these groups and places I’ve thrown myself into since the post, I’ve met so many parents with kids who spoke at 5, 6, 7. Only the universe knows I guess! Any questions feel free to ask. Hope you’re doing okay 🌹

So glad to see your update! Do keep optimistic on language, my dd was proverbial at 3 and fully verbal at 4, can happen in autistic dc. She also caught up on her other delays mostly, though has dyspraxia diagnosis which explains the motor skills. My dc is an adult who has completed university eventually, is doing further study and is married! Socially stayed lagging behind right through teens but continued to “develop “ right into 20’s, also interestedly continued to grow in height until 20, very unusual for girls, it’s as if she just took longer than normal development across the board! Hang in there everyone and never give up hope (I’m still hoping she’ll actually work properly!)

@mumstressoutmum so many similarities with my son. We've just had a HUGE leap in language skills and receptive communication skills in the last couple of weeks. Almost overnight, honestly. You sound so much more optimistic which is great! Just wanted to encourage you to keep that faith and hope for the future. It's hard when you're dealing with so much uncertainty but these kids are amazing and things can change so quickly. Best of luck to your family!

My DD has GDD with autism and she’s going to be 15 this November. It gets better honestly. Developmental wise she’s a maybe 2 years behind her peers but socially she’s a lot younger.

We did have SALT involved up until she was about 8 and she attends an additional needs school which we were incredibly lucky to get and she thrives there and gets unbelievable experiences but it will make you see the world in a whole new way.

for times that are hard I recommend the poem welcome to Holland

Hi. Can I ask how your little one is getting on now? In a similar situation with my 3 year old. X