Finally got a dx(of sorts)...learning difficulties

[milge]

Just come back from an appt with dd's paeds consultant, who said that he is going to formally diagnose her with learning difficulties so that the long winded statementing process can begin. He then scared the bejeesus out of me and dh, talking about special needs institutions, lifetime care, aiming to get her living independently "at some point". She is 2y8m and is globally delayed - she is placed about 9-12m mentally and 18m physically.She had no birth trauma and had had every test under the sun to rule out every condition they can think of. Does anyone else have such a diagnosis, and what does it mean in practise? Thanks in advance.

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Milge, are you OK? It's really tough when they spell it out. DD got a vague diagnosis of learning difficulties before she was diagnosed with autism. It's tough, but good that you can now start statementing. I hope you are OK and come on here for support.

I don't have any experience of GDD but I would've thought that at 2yrs8mths it was far too early to be talking about lifetime care and special needs institutions.

Hopefully someone else will know a lot more than me. Sorry you've had bad news.

thanks for your messages and the bump ggg - coppertop - i too would have thought it too early to talk about care, but i did ask what he envisaged as her future. JakB- i think i'm ok, but its best to have a dx than not for statementing purposes, but its a little bit grim to hear it.

It sounds a bit early to me too -just going on how much ds2's diagnosis changed from 9month-4.5 years. I hope the statementing will be straighforward and will mean extra support. Best wishes xx

Sorry to hear you had this news milge I had a very similar consultation with dd2's paed when she was about 20 months or so. He started exactly the same spiel about special school, at age 18 being in a 'home' and never being likely to live independently. It's hardly what you want to hear is it? I was told that our particular paediatrician was keen to get 'acceptance' in the parents, and he had rather a depressing way of going about it. It's tough to hear

dd2 is now 4 and has no diagnosis apart from learning disability/global delay. I'm not sure that a diagnosis would make much difference to her really, she has physio, SALT etc at her special school, which I guess would have been the same with a diagnosis.

No one apart from that paed has ever talked to us about the long-term future, no one can really tell what dd may achieve. Don't let him get you down, there is masses of time ahead and your dd is in the best hands and getting the help she needs. all the best xx

we had similar too. My dd is diagnosed with 'microcephaly and GDD or learning disability. our Paed was exactlly the same. Crushing at the time and he had no bedside manner, so to speak. but I think if they paint 'worst case scenario' then anything more is a great acheivement and you take nothing for granted. my dd will be 6 this year and still no 'formal' diagnosis, it is hard, but I have been to my dd's special school and there are lots and lots of children without a cause or diagnosis and at least i am not alone. not really a consolation though. Look after yourself x

My DS is 2.8 and also globally delayed. It seems impossibly early to be talking about the future like that. As other mums with children who have/had GDD have testified, a huge amount of progress can be achieved in a few years. We are currently going through the statementing process for the second time as DS got turned down in January, the ed psych said he was borderline and that children can change a lot in a year. My point being that that doesn't sit very easily with him needing to be in a home/institution in years to come! I think the doctors do tend to paint the worst picture. Have you thought about taking your DD to BIBIC? You might get a more practical and helpful assessment there.

Well another unexpected rollercoaster of a day - had a phone call this am asking if i could bring dd down to another clinic. Was a bit surprised, as the professor said he had an educational psychologist with a free morning in clinic, and he wanted the EP to do an assesment of dd. We were there for 1.5hrs and she was no more encouraging about dd than the paeds professor had been yesterday. She said dd was about 6-9m mental development, and 12-18m physical development. She recommended that dd go mainstream for nursery pre school, but said that she felt dd would have to make "extreme progress" to be able to cope with mainstream shool from age 5. She said, as others have, that nearly 3 is very early to be making assumptions, but that was her view. She described dd as having "moderate to severe" learning disability, and said that she would try and progress a SALT appointment for "such a mentally delayed child" . The whole thing was awful - it reinforced to me that i really am faced with bringing up a child who has a "mental handicap" - non pc phrase to use, i know, but it jumped out at me on the mencap website she referred me to. Maybe i have just been kidding myself these past 3 years that dd will be ok, I hope she will be, but life doesn't look too rosy in the milge household tonight. We are off on holiday to scotland in the morning, probably a good thing, but would happily take to my bed for the next 24 hours and hope dd has magically caught up by the time i wake up.Sorry for waffling on.

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What an awful day for you. xx

Try and enjoy your holiday......thinking of you. Sending hugs.

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oh milge, this all sounds so familiar - sorry you have had such a horrible day Take care of yourself and hope you do manage to enjoy your Scottish trip.

I was about to say 'try and keep holding on to the positive things about your dd' - but you will do that anyway and I think you are allowed to feel very sad about this for a while.

Also remember that nobody can predict what your child may achieve.

How are you feeling Milge? It's a really tough time but I promise you it will get better with time

Oh Milge, how awful you must be feeling.
Its a shame that the professionals you've seen have no skills in giving you difficult info in a sensitive way. I think the ideal would be to be told many things at this stage, how ever hard, and hope you won't have to hear anything like it again for a long, long time, but it should be done a lot better than this.

Feel for you Milge Sorry you consultation was so clumsily handled.

When I read your post it struck a real chord with me, because I honestly believe that we could well be in a similar situation to yourself a bit further down the line. My ds is 21 months without a dx and with the general preliminary `label' of developmental delay.

I just wanted to share something that my parents-in-law told me: My SIL has learning difficulties and my MIL and FIL were told 40 years ago that she would never live independently, never work and would require life time care. She has proved all those medics wrong. Not only does she live independently, she works, goes on holiday abroad alone and seems to have a fantastic social life through her church - oh...and she got married to a chap who himself had learning difficulties (he has unfortunately since died).

I know that she is from a different generation to our children, and that we do need to be realistic about what our children might achieve and make appropriate provision, but..... with developmental delay...as you say, they dont always know what has caused it....and, therefore, I suspect that they dont always know how things are going to turn out...

Milge, i think it is normal to feel like this too. i felt like my insides had been taken out twisted all up and shoved back in. i felt physically sick and felt as if my world had ended. Try to be optimistic and see that your daughter is still the same person she was before they said this. It just takes time to come to terms with things xx

Merlot thanks for sharing a happy story

oh milge, i'm so sorry to hear this, nothing useful to add as I have no experience of SN, but i'm thinking about you, xxxxx

Milge, am worried about you. Have CAT you. I hope you are OK and we are all here if you need to talk, JakBXXXX

I think Milge might be still in Scotland?