Daughter has been diagnosed with GDD: Hi, my daughter... - Mencap

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Daughter has been diagnosed with GDD

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Hi, my daughter is 2 and a half and has been diagnosed with GDD, she is on waiting lists for all kinds of help, I was just wondering if anyone had any experience they would like to share with me about what’s to come etc..I’m very much on my own with this, and have older children so am feeling a little overwhelmed and scared. Many Thanks 🙂xx

6 Replies

You are not alone as our daughter has server global development delay

Hello,

Please don't worry!!! My son was diagnosed with this at around about the same age as your daughter, he is 28 years old now. The doctors and psychologists gave me the worst case scenarios. I wouldn't change him for the world!

In away forget about the label and just go with what your daughter needs has she develops.

That is what you have done with your other children, because they are all different and develop at different rates. This diagnosis won't change your daughter, she will always be your daughter, she may just need a little extra help, the best thing to do is wait and see if she needs help with certain things then read and research how to help her. After all you know your daughter best and how she learns verbally or visually for example.

I will always remember taking him to a physiotherapist and she said he would probably end up in prison. This shocked me and I went home and cried because he had trouble with his concentration. I'm still waiting for this to happen! He is the most sweetest kindest young man you will ever meet. He knows what is right and wrong. Everyone who meets him says the same, so remember even professional get it wrong. He doesn't swear, and he will go out of his way to help people.

If you need any help at all, please feel free to message me again.

Kind regards.

Christine.

Hello,

GDD is a term used, I think, when there is no clear diagnosis. It is the start of an adjustment which can be an emotional ride. No-one wants to be given a diagnostic label but at least it narrows the focus and can give some clarity to help you understand what happened and potential, and there is instant inclusion in all that. GDD leaves you floundering and looking for answers that no-one, professionals included, has. What happened for me with this, (32 years ago), was a period of disbelief, (denial), fear and worry that my child would not have the 'easy' life his siblings would and there was anger too, a year of absolute grief at the loss of the imagined life and guilt that I had caused it in some way. I know I am not alone in this. Now I see his happy life and the lovely person he become and feel proud that we helped that and touched that so many others have cared that he should feel really good about himself. I can also look back at all the little moments that went into that adjustment that felt like such loss, but has given us gifts that we could never have imagined when it all felt difficult and confusing. Doing this, reaching out and creating a support network so that you don't feel isolated is the best starting point and, as your child grows and needs change, your world naturally expands into schools and social groups just like any child's. I wish you well on this journey, it will bring rewards and find all your strengths. If it is difficult, seek help.

Hi,

It is great to see the supportive replies on this post.

On Mencap's website, there is a page on GDD mencap.org.uk/learning-disa... . If you scroll down to the bottom, there are four organisations signposted on it that specialise in GDD. You could also try contact.org.uk if you wanted to.

If you would like to speak any more about this, then do get in contact with Mencap's Helpline by phoning 0808 808 1111 or emailing helpline@mencap.org.uk.

Best wishes,

Harriet

Hi there

You're not on your own, lots of people have been where you are right now and would be pleased to listen/help/advise.

One such is Starscope which is a collection of mums (and the odd dad including me) with special needs youngsters, based in St Albans, Herts starscope.org.uk/ I'm sure there will be other local branches of SCOPE in other parts of the country. Even if you are not local to Herts they will be pleased to talk to you.

Another great organisation to contact is the PACE Centre at Aylesbury, Bucks thepacecentre.org/ Their ethos is the sooner they get to work with a special needs youngster, the more they can do. My boy started with them aged two, just like your daughter, and stayed with them at school until he was 12. He's now 25 and doing just fine, even in the present chaos.

Good Luck!

Jack's Dad

Thankyou all for your kind replies, it really helps knowing others are there. My daughter has been for a genetic blood test this week, could anyone tell me is this a normal procedure for GDD or does the doctor suspect something? X

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