Preemie now 3..diagnonised with Global developmental delay. Any chance of catching?

(22 Posts)
Ayd7815 Fri 18-Jan-19 22:59:35

Hi everyone. I’m hoping someone in a similar situation can give me some advice.

My son was born prematurely at 32 weeks and he was in NICU for 2 months mainly feeding and growing. Wasn’t on ventilator but needed oxygen support for 2 weeks. Fairly uneventful.

Born in August due date was in October. So he has to go to school a year earlier then expected and also being born early with delays puts him at a huge disadvantage.

3.3 years down the line he had a GDD diagnosis since 2 years old. He sat at 8-9 months. Crawled at 1 year old and pulled up to stand at 13months. Walking with a walker toy at 18 months and walking independently at 22months.

He’s delayed still as he can’t yet walk up stairs with ease. Uses his hand on the rail for support. Also he will fall if he’s walked into. He isn’t fully stable yet. But he climbs on chairs and sofas and everything. But he’s making progress every week and gets better and better and more and more stable. Normal movement pattens. He has hyper mobility so I think that’s why he was delayed here. The physio/ OT he has signed him off.

Cognitively he’s delayed. Knows some colours and shapes if I ask ‘which one is’. He loves books and points out all the pictures when I ask ‘where’s’ for lots of items. He sounds out plenty of animal sounds when I ask ‘what sound does this animal make’. Does some simple puzzles. Esp peg board puzzles with circles. Can draw a circle when asked and uses crayon between thumb and finger.

He is very speech delayed only has single words. Started talking at 3 but used to babble fine before. He points at everything he wants since 12 months. This is how he used to communicate and knows plenty of gestures. He follows lots of single step instructions and some 2 step instructions too. But he not yet toilet trained. Not sure if he’s ready.

I think he’s 6months to 12 months behind in most and 18months in speech. He makes progress all the time but I’m still very worried why he’s delayed?

Self care skills he helps getting undressed but can’t do it alone. He can feed himself with hands and a spoon. He knows how to brush his teeth and wash his hands but doesn’t like doing it. He’s delayed for a typical 3 year old in this area too.

School he’s had senco since 2 (private nursery) and now He’s in preschool and they want him to have a EHCP for reception. They say he will struggle without it and the gap will widen.. Do you think he will quailify for this? Does he need one? Isn’t the school SENCO enough? They said they don’t have funds and lack of staff maybe this is why? They say he will get knocked around on a play ground and he’s still in nappies and needs encouragement to eat at lunch. (He’s not a fan of eating. He’s lazy)

I’m worried about ASD or learning difficulties. Will he catch up with support? Are these likely with what I have discribed? Feeling so down and emotional for days now

I should also add. He has no issues with eye contact and smiling and getting excited etc. He’s ur affectionate and loves cuddles. He’s always trying to get me attention and is good with interaction too. (When we reading together)

He copies actions other do all the time. Copies cartoons and gets excited and is careful and affectionate around the new baby in the family (neice).
he may not say much but he does recognise lots of nursery rhymes and does the actions for them.
He has pretty good memory. I tell him something once or twice and he picks it up. Especially recently.

Thanks! Any input and positive stories are appreciated!!

OP’s posts: |
BackforGood Fri 18-Jan-19 23:16:31

Hello Ayd. If the Nursery SENCo is offering to help you apply for an EHCP, then I would absolutely take them up on that offer.
They clearly know him well.
It is lovely that he is making good progress and you can see all the time that he is moving forwards with what he can do, but what you have to think about is how he will get on as one child amongst 30. Or one child (in the playgound) amongst a few hundred with probably only a couple of staff.
(Though it is technically not supposed to happen), some LAs set the bar for applying for an EHCP so high, it is a battle all the way for parents. If your education staff feel that it is worth applying now, then take the opportunity with both hands.
Yes, in theory every school, every Nursery, every education establishment ought to meet the child's needs, whatever they are, whether they have an EHCP or not. With austerity hitting school budgets badly, and resources scarce everywhere, sadly, children without an EHCP sometimes don't get as much support as they ought. Indeed, sometimes children with an EHCP don't get the support they need. With an EHCP, you have a legal document, that says the LA MUST provide the right support.

BackforGood Fri 18-Jan-19 23:19:05

As he was born (in August) at 32 weeks, then one thing you might want to look in to is deferring entry, and starting REception the following year.
I'm not a fan of people wanting to defer "just because they don't want them to be the youngest", however, your ds (corrected) should be in the year below. If you look at his skills and abilities and compare with dc in the school year below, then he won't stand out like he does in his current school year.

Littlefish Fri 18-Jan-19 23:21:59

Is he due to start school this September? As he's summer born, you have the right to request that he starts school in September 2020, into Reception. This would then become his new year group. In the County where I work, this is for the "life of his education" which means that he wouldn't be moved back to his original year group when he goes to secondary. I don't know if that system is the same nationally, so it's worth checking.

Given what you've said about his delays, I would definitely consider seeking a deferral.

BackforGood Fri 18-Jan-19 23:27:14

From what you say, it doesn't sound as if he has ASD, to me.
'Learning Difficulties' is a bit of an umbrella Term, just like his current diagnosis of GDD, so he might have, or might not have, but I wouldn't worry about ASD.

As to 'Isn't the school SENCo enough?' It depends on 2 things. 1) the quality of the SENCo, and, more crucially 2) How much input / influence the SENCo has as part of the Senior Management Team at the school. Unfortunately all the extra funding that went in to schools for SEN/D as part of the Gvmnts drive to break up LEAs, wasn't ring fenced. Schools are short of money. Now it is much more difficult to track specific funding for specific children, and not all the funding that ought to be there for SEN/D is there, in all schools.
Even with an EHCP, the school may well not get any more money, but it is at least a way of pointing out very clearly that your ds has a clear right to additional support.

With an EHCP, you also have the right to apply for schools outside your catchment area, if you feel another school, other than your local one can meet his needs better.

hendricksy Fri 18-Jan-19 23:36:05

If he delayed because he was just prem then he should catch up but if there is something else aside from this then probably not . I had a premmie who turned out to have SN . Being prem was always the red herring and was blamed for his delays but I watched prem babies catch up with months so I 'knew ' something wasn't right . Trust your instincts!

RB68 Fri 18-Jan-19 23:46:14

I had an August 32 weeker as well (well 31 plus 5) but fewer issues afterwards, couple of things I raised with the HV were actually also about me - so speech was one - clearly understood and could follow good instructions etc but at age 2 & 4mths about 3 words. I got told to ignore the pointing and gesturing and actively encourage her to "say what you want" and it was frustrating at first but actually very quickly we got masses more words and sentences.

I would take some time to actively work with him on specific things but one at a time so focussed in a spate of time.

Obviously I don't know your child particularly but I also decided on a CM not nursery as mine got more one to one from a more mature CM - I wanted someone with lots of experience rather than young and energetic etc without the knowledge etc

RB68 Fri 18-Jan-19 23:47:48

oh yeah and as to delaying school I was told I could do that BUT she would join her cohort in Yr 1 when going to school. But no delay was present after age 2/they signed her off as caught up

mammmamia Fri 18-Jan-19 23:58:10

Don’t know about the special needs but my nephew was born at 32 weeks same situation as yours - due in Oct, born in August so ended up starting school a year earlier than he should have done.
He doesn’t actually have any SN but after a couple of years of struggles he moved down a year and repeated year 2. Should never have started school when he did.

littledinaco Sat 19-Jan-19 00:05:20

I would defer entry into school for a year as it sounds like that will help him hugely.

You won’t know whether ‘the gap will widen’ and he will struggle more as his peers progress or whether ‘he will catch up’. It’s hard not knowing but it doesn’t really matter, take each stage as it comes. The most important thing is that he’s happy and he’s progressing at his own pace regardless of this is 6 months or a year or whatever behind what is typical. It’s important to access the right support when needed (such as OT,etc) which you are doing in order to support him as best as you can in the areas he’s struggling in.

One of my DC has SN and delays and has ‘caught up’ in some areas but the gap in other areas has widened massively so what wasn’t as noticeable at age 2/3/4 got more obvious as got older. The areas DC caught up in though were things we really didn’t expect at all (and thought was going to always be massively delayed-now is one of the ‘better’ among peers for some of these areas which you would NEVER have guessed as a toddler) The ones the gaps widened were what we thought were only slight delays and not really an issue. It could be that we put more effort into working with the things that were more significant delays though.

Ayd7815 Sat 19-Jan-19 16:34:18

Hi Everyone thanks so much for all your replies!

@Backforgood I understand the EHCP is something needs and I will be applying for it and I hope he gets it. But they also don’t know everything my DS can do he’s a nervous kind of child and gets intimated by the amount of children in the classroom so he’s not come out of his shell yet. Also If I defer him I know this will benefit him but he may also benefit from going with a 1:1? Maybe if he’s still not ready repeat reception? I really hope he doesn’t have ASD or learning difficulties but I can’t tell that atm.

@littlefish thanks for your reply, I will check if this in my county, I hope so, but the head teacher did say in higher school he will need to skip a year..I was surprised by this

@hendricksy Thanks for your reply, I not sure if my DS will catch up or if theres a underlying issue, only time will tell.

@RB68 Thanks for your reply. I can try ignoring the pointing and gestures with my DS good advice! How often did you take your child to CM? Im glad she caught up!

@mammmamia Thanks for your reply. How’s your nephew doing now? Is he doing ok in school now?

@littledinaco Thanks for your reply! Its very true all that matters is his progress and that he keeps making progress, I guess my concern is that I just won’t want the gap to widen even further sad

OP’s posts: |
Littlefish Sat 19-Jan-19 16:41:00

If he's in a state school, then it's much harder to repeat a year, than it is for a summer born to defer a year.

Shantotto Sat 19-Jan-19 16:44:22

Definitely apply to start reception a year later. You don’t really need reasons but some areas will ask and you have a very good one! Join the flexible school admissions for summerborns Facebook page for advice.

hendricksy Sat 19-Jan-19 16:56:43

My son at 2 cousins walk / talk and was so delayed he was much like a baby . He was turned down for an EHCp the first time and I had to appeal / fight for it . They wouldn't suggest he needed one if they didn't think he had a chance of getting it to be honest . They are very hard to get. I would start looking at schools ASAP and find a fab one willing to help regardless . My son did 3 happy years at ms before moving onto sn school and nothing was too much bother . Slot of schools sadly aren't like this . Good luck

purple776 Sat 19-Jan-19 17:03:32

I work for EHCP team and I have worked across three authorities. Every LA is different but from what you have said I think it's unlikely you'll be given an EHCP at the moment as schools have funding to support SEN to a point and I don't think there would be enough evidence that he would need above this level. The LA would likely suggest monitoring his progress and getting service involved such as EP.

Having said that, if it was me I would apply as there is no harm in this and if it's turned down you can apply again after 6 months.

You don't have to defer for a year if you don't want to as he will receive support. It's worth knowing that once he starts school it is very,very difficult for him to then be held back (or repeat a year) in the future.

hendricksy Sat 19-Jan-19 17:18:50

One other thing to note is I found a lovely school who had classes with mixed years so although he didn't officially repeat reception , he did . My son started school at just 4 , no speech , only walking 11 months and in nappies . It was obviously a massive worry but I didn't want him to have to jump into year one . It was all fine , he was never going to catch up but he did well and enjoyed it .

Soontobe60 Sat 19-Jan-19 17:47:13

I am a Senco in a primary school. You need to ask the nursery he is at to start the EHC assessment. Is he under the speech therapybteam? If not, ask then to make a referral. Also, push your GP to get a paediatrics referral too. This is all about gathering evidence of his strengths and needs. We have several children in our school who repeated nursery then started Reception when they were already 5; some because they were august birthdays, some because they have additional needs. If he starts a year later, then he will stay in the cohort he starts with and won't have to miss a year later in to 'catch up'. He won't go to secondary school until he is 11, nearly 12. This is a legal right, not something that schools can pick and choose, although many Heads still don't know the rules!
You must push for an assessment now, not wait until he's started school and not coping. If he does have a diagnosis of GDD, that can mean he will have a very wide range of challenges, from hardly any to needing a special school. Only you will know where on this range your child lies. There is absolutely no link between GDD and autism. Yes, some children with GDD may be autistic, just as some children with autism may also have GDD, but they are not linked.

mammmamia Sat 19-Jan-19 18:58:34

OP my nephew is fine and doing well thank you. I should add that he is not in a state school. He moved to a private school to repeat year 2 which is going to be much easier than repeating a year in state as other posters have said.

Ayd7815 Tue 22-Jan-19 08:41:14

Hi everyone thanks for your replies I think I will apply for a EHCP and send him to nursery for another year and defer reception. Thanks for all the advice

OP’s posts: |
RB68 Tue 22-Jan-19 12:10:56

DD was with the childminder every day from the age of 11mths and from nursery age 1/2 a day every day. But I would stress there were no underlying issues other than being born early

Littlefish Tue 22-Jan-19 21:47:55

Don't forget that you still have to apply for a school place in the normal way. When you've been given the space, then speak to the Headteacher and ask for the place to be deferred for a whole year. (Don't get persuaded to delay for a couple of terms!)

Shantotto Wed 23-Jan-19 07:27:49

They can’t defer a place for a whole year- usual process is you get permission to start reception at CSA and then you apply as normal the following year and you get treated the same as everyone else starting that year in terms of places being allocated etc.

If you tried to defer a place you already had as said they’d only be able to do it for two terms. They can’t hold a spot for the next year.

Join the Facebook group OP! Or search your local authority for their summerborn admissions process but remember some don’t even know about it or will fight you! Some will accept no problem.

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