Is there anyone out their with dc with developmental delay

[Hedgyhoggy]

Had ds ed psych assess report today as part of his application for stat ass and it's set me on a bit of a wobble. Feel like my bubble has been deflated. Day to day I don't think about his problems too much, he's a loving, happy, sociable little boy. However, the results of his assessment are really negative. She has assessed him using the bas 3 even though he is 4 and he has achieved percentiles of 2 (verbal ability), 0.3 (non verbal reasoning), 0.7 (spatial awareness) and below 0.1 for conceptual ability and non verbal composite. What does this mean for him now, having just started reception and for his future. There seems to be quite a lot of info and support for specific learning difficulties but for global delay it's all a bit, 'well they're all different'. Feeling alone and unprepared

DD1 had a global development delay label for a while. It's now been replaced by a moderate learning difficulties label (gdd tends to be faded out once they're school age).

When she was 4 she couldn't be tested because she wasn't attentive enough, so I have no data to compare. Now, she is nearly 8, in year 3.

In some ways she is not much different to her 4 year old self - impulsive, no sense of danger, etc. academically, she is on p levels in all areas except mathematics, where she managed a 1c for her SATS, but is likely to slip down to p levels again this year due to the curriculum changes (thanks Mr Gove )

Children with gdd often develop in jumps rather than a smooth trajectory, and often one area may regress as another is developing for a while, until the new skill is established.

Thanks for replying lougle. Your last sentence sums ds's development to a t. How has she coped with school, is she mainstream? What additional support has she received and could you recommend any interventions that you have found useful. Guess I'm after some real life help rather than the austere prescriptive support I get from the professionals, not that they haven't been good, but they are just not me (mum) - if that makes sense.

hi my dd is 7 and has been given a gdd label alongside global learning difficulties. like your dd she scored low on all assessments, 0.5 centile for most.
dd attends ms fulltime and has been on SA+ since year one and we have just been sent her preposed statement. she is currently in y3 and attaining P levels in all areas apart from maths where she achieved a level 1A in her sats. im very proud of her maths achievement
dd really struggles with reading and writing and has made very slow progress from reception to now (Y3).
dd is impulsive, finds it hard to sit still and concentrate and has regular meltdowns due to frustration etc. she also has salt input as her speech clarity is disorderd, although her understanding is on par with her peers. dd recieves regular therapy at school and we have physio to do at home alongside ot and salt programmes. sometimes I feel as if I am a bloody therapist

DD1 goes to special school, Hedgyhoggy. She is in a class of 11 with 4 staff (teacher plus 3 TAs). They do an OT programme (Rainbow Road) as part of their curriculum and a SALT group fortnightly, with SALT embedded into the daily routine. She adores it and thrives there.

Hi I have a daughter who is in year 1 who has global delayed development by 3 years and she is stuggleing so much in school she has only made limited progress since she started in nursary. The school said she needs high level of care in school because her awerness and strainger and danger and understanding and comunicatn with other children is an issue becauuse she dose not understand and communicate aswell which I know she dose it cause she dosent understand what the other children r saying to her and can't understand their needs and feelings she is at the moment having her assesments done then having her statment issued hopefully soon. her needs r two complex for her to stay in a mainstream school they said I'm so worried she is at the minit in school with her brother and sister and she loves it I don't know how she will handle being moved new teachers new children. She gets help in school ta speech and phycologist and diffrent specialist but nothing they r all doing is helping her I surpose it dosent help because she has a limited memory she forgets almost instanly with in ten minits she has forgotten what she has just been learning I don't get know help for her and she needs constant supervison at all times I have to ddo nearly everthing for her. And anouther thing I shuggle with is hobbies for her. Because she struggles two much places won't let her go cause she needs more time so that's wasting theirs I surpose. It winds me up so much she loves to dance but dose have balance troubl and she trips and falls a lot and that's an issue cause of insurance do any of u know what surport I could get at home for her I just think its so wrong cause she gets nothing its like I'm going round and round and round I can't let her play out side cause she escapes and dose not know raod safty or strraigers she thinks every one is her friend bless I wise it was that safe but their r two many dangerus ppl outside these days. Any one have any surgestions or any advise anyone going though the same

Toniredshaw you sound a bit like me in just not knowing your full entitlements....I think part of my problem is that I still live in hope/or perhaps denial that 'he'll be alright'. With regards to hobbies my ds has quite a short attention span and would reap havoc in something like a dance class. However, I do have a niece with cerebral palsy and learning disabilities who goes to ms even though she is year 4 and on p levels because she benefits so much from the social experience of school, she is a good example of recognising what a good school can do and that it's not just about academic achievement. She wears a splint but it hasn't stopped her doing ju Jitzu, dance, kayaking etc she loves it, people have been great and it's also great the positive affect she has on the people she meets. I have found a really lovely swimming teacher who has let my ds stay in the class with the preschool age children as he's a summer baby just starting reception, lots of fun. Special schools can be a source of info and parent support, give them a bell they can only say no.

Sounds exactly like DD1, similar sort of GDD diagnosis in MS reception.

Reception year was bearable as mainly play, year 1 was a struggle, year2 was a disaster and the school really had no idea what to do with her, they looked after her well but did nothing for her academically. The gap just grew wider and the school real wasn't one that had any interest in SEN children, statement was meaningless.

So year 3 was in a SS, academic progress has been amazing. Year 3 seems a popular transfer year into SS and all those that started at same time were all in a similar boat as us - came from MS schools that hadn't really included or taught them. First term was challenging as they all had to get used to actually doing some work! So now making good progress. It's hard to say at this stage what the future holds other than there will be a lot of tears and heartbreak as you adJust.

Don't want to paint total doom and gloom, yes there are a lot of negatives, but some advantages.....a 9 year old that hasn't heard of one direction, doesn't even know what ear piercing is, no backchat, doesn't even question how Santa delivers all the toys....the list does go on! You have to be realistic, life will be different, there will be a lot of tough decisions and battles ahead, it will be hard work juggling it all but you will survive it all.

Advice is : fight tooth and nail for the statement, once you have it don't believe a word the school say about what they are doing and ask for evidence, look at other schools in the area MS and SS some are better than others, push to make sure your getting sufficient SALT and OT input (laugh when you realise what they think is adequate) apply for DLA early on - we were clueless about this until SS, the extra money can then be used for private sessions. Best of all....keep coming on here as this is the one place I've learnt the most from x

(oh and delete any friends on FB who put those 'I'm so proud that junior has gone up a book band, won star of the week and has been selected for the 2016 Olympics' smug updates to save your sanity!)

Thanks mommapiggy...you're right I shall grow a bit more of a back bone, file the assessment and just hope it does it's job and gets him some support and carry on with my lovely little family. Was feelin a little grumpy yesterday after the ass results and then lunch with the in laws where they just went on (and on) about sil 2 yr old who is 'so ahead' but I went for a walk with my dc's and came back smiley. I think I might be one a Mumsnet regular...feel rejuvenated!

Yeah glad your feeling more upbeat! It will be the comparing stories that do your head in the most. It can be heartbreaking as you are constantly surrounded by examples of it. Some people are more sensitive about than others, gradually you learn the ones to avoid! However, when its relatives it can quite challenging.

In terms of assessments you almost have to detach yourself emotionally from the situation and make sure you do what is needed at each stage - you will never get a statement if you just focus on the positives. DLA forms are best completed after a bottle of wine on a really worn out grumpy sort of day! There's are times when you don't feel like a parent but more of some form of determined warrier having to fight for everything!

Keep going for those walks to stay sane! X

First of all thank you for the advice and thank you for listerning it can make me feel a bit cornered at times and I have just completed dla forms I thought I will give it ago on one said she was even entilted it anything I oftern get the impression they just can't be bothered with the paperwork to be honest. Warrier I know the feeling I will do my best to do the best for her she's my little angel. Well the hospital told me she had down symdrome when I was pregnat but she didn't look it at birth they said she would look downs and she dosent so she hasent got it but I all wounder what if. Then she got managitus at 4 months so they try to use that as an couver up for this but I don't think is the case I have all way woundered if some one could be born with downs and not look it ?only a blood test would prove it and the docs said its impossible so they won't do a blood test for that maybe in the future they said. But never mind what will be will be and I'm so proud of her no matter what anyone says she my little angel. Thank you everyone x

Hi Toni
If your little one wants to do hobbies where you can leave her you can get direct payments (free money from the local council) to employ someone to go to things with her and help her join in. We have them to help my little boy at Sunday school. I found out about them by looking on our local council website.

Meningitis is really horrible. That must have been awful for you.

Hi Toni
I'm really surprised the hospital has been so reluctant to carry out genetic testing. My ds had genetic tests at 2 yrs which didn't pick anything up, he is due to have more (new) genetic tests soon along with an MRI. I know you don't need (or will always get) a reason for gdd, but the way I see it is that if there is a dx then it can help with gaining additional support and with the statement king process. Perhaps if it's bothering you, you could have a word with your paed, which health authority are you with? Good luck

She is under a ped community consultant he won't test her for genetics he said he's never know any one who hads downs and don't look it but I know a lady who use to work at a ss she said they has a young lady one who dident look it but she had everything else a down symdroms child would normaly have. So she was tested and she had the genetics for a down symdrome but to see her u wouldent think she has it she said u would only think she has a speach disfigament she said. I will look in to the local authority about some funding for surport for her to do hobbies and thank you so much. I will let u all know how I get on x

Toni you could go to your gp and ask for a referral to your local clinical genetics team. Not sure what your dds other features are but developmental delay could be caused by the meningitis.

I have 6 yr old twins born 12 weeks early one has dev delay and we are going through statement process at the mo. I think he wld be better off in a ss as gap is widening. Breaks my heart to see the difference between him and his brother but he also has a lot of positives because if his SEN. I worry constantly about the future and how he will cope with life as an adult but then he amazes me by doing something like remembering my pass code on the ipad !

ZIPADEEDOODAH. Can I just ask how the development delay affects your twin? I only ask because I am in a similar situation. I have two year old twins who were born at 33 weeks. Twin 1 ironically the bigger and stronger of the two has been late in meeting all her milestones and they said that she had development delay. Still not walking at 2 years old, a MRI showed that she has mild CP.
It is really difficult when you have twins who are at different stages and have different needs. Twin 2 is running and climbing while Twin 1 is just at the cruising furniture stage despite months of physio. I know that she is intelligent, she has lots of words so I know her mind is not affected. The months are rolling on though and at this stage we thought that she would be further advanced than what she is but unfortunately I think she is falling further behind her sister and her peers.
I never imagined that having twins would be like this. Having twins is hard enough but having one with additional needs just makes things extra hard.

Albaba, that is really interesting because our stronger twin is the boy with the delay and the problems. They are 6 now and everything from the toys the boys like to what they like to watch or do is different. They have some common play times but the gap is there and clear. I think the harder focus is to try and remember my boy with no SEN as we are always focused and worried about our SEN son and are working hard to try and restore that balance. I also have DD who is 9 and try to carve time out for her too! I agree it is exhausting but it gets much easier, when mine were 2 I honestly didn't think I could cope but it gets better and easier and I really have felt in the last year I can cope and feel a lot more optimistic about the future for my son with a delay. Feel free to contact me if you want to discuss. We went through a very hard time when the children were about the age of yours, it was a kind of grief as we realised that our son would probablyhave life long challenges, I feel completely accepting of his situation know but there was a lot of worry and anger back then, not logical i know but it is a kind of grief.