How to keep this in perspective - DS2, sensory issues, reception?

[EyeoftheStorm]

DS2 was premature (30 weeks), Grade 3 IVHs leading to hydrocephalus and a VP shunt when he was 5 months.

Prematurity makes him a July baby rather than a September one so he starts school this year. Up until now I've been fine with this, but as he gets older I realise he's not growing out of some things I thought he would have by now.

A few examples: fear of hand dryers & hair dryers, upset if someone touches him unexpectedly eg ruffles his hair, dislike of hot/cold temperatures, loud, unexpected noises, small touches are a 'punch' or 'you hurt me', must take off his top if he spills something on it.

They don't sound like much (it definitely is all sensory) but I realise that I 'manage' him a lot (much more than I did my older two) and I think he is coaxed along a lot at nursery too.

I am worried that when he gets into reception, he won't have that and he will find the environment difficult.

We saw a paediatrician who said he has sensory immaturity. I took this to mean he would grow out of it.

Nursery say he is not where he should be, but they see it more as just his personality, that he doesn't like to conform and a general immaturity because he is at the younger end of the year.

How worried should I be about him starting reception and if you've been in a similar situation, what practical things can I do for him?

[EyeoftheStorm]

Polter We're not seeing anyone and I think that's part of my worry. Everyone seems to be very much 'oh he'll grow out of it' whereas I feel there's more to it than that.

[EyeoftheStorm]

Maybe that's the next step.

Before your DS went to school, were his sensory problems clear to nursery/other people?

At the moment, only the paediatrician seems to think there's anything there. Were you told he would grow out of it or was it clearly different to other toddler phases/fancies?

[ohmeohmyforgotlogin]

I think it is really helpful to have as much detailed info to give teacher as possible about his sensory needs. Recommend books to them, write brief list of his issues and what strategies you use to help him. Any sensible teacher will want to do things that will make the class more peaceful and help your child cope. I educated his primary teachers ( and that was SN school!) and have just had to do it all over again for secondary. His new teachers have moved from the attitude of 'he just needs to settle in' to actively working out strategies to help him. Rally important to stress to them that he is not being naughty, these things are painful for him and need to be addressed. OT assessment also good idea.

[LadyMaryQuiteContrary]

Ds has sensory issued. They were picked up, when he was 13. They don't grow out of them, you need an OT's input. If nothing is done then the school will just think he's a naughty child when he really isn't (voice of experience here).

[EyeoftheStorm]

Thank you that's what I need to hear. I don't want to wait and see how much of a problem it's going to be - I want to do something.

[LadyMaryQuiteContrary]

You learn to adapt over time. You only buy jackets because jumpers are too tight, you don't bump into him because you know he'll cry, you don't buy shoes with laces because they are too tight, you keep the TV low because you know the loud noise upsets him. It all becomes normal and you don't think about it. When he moves into a new class or school the teacher speaks to you at the end of the day, every day, because he's become overexcited when outside or has covered his ears when the class has had music. You stop seeing it as quirks after a while as you've had 'ds has been naughty' said to you time and time again so you find it draining and confusing. Other kids don't invite him to parties because he's 'odd' and your son can't understand why.

Don't wait and see. Get an OT referral. I didn't know what this was until I read a thread on here in January. The Physio picked it up during an assessment in March so I didn't need to tell her. Ds is 14 now though and he's missed out on so much. There's things that you can do to help your son so that he has a better time at school, and the OT can help you to do this.

[MareeyaDolores]

Yy to seeing an OT.

Having a professional identify and describe stuff (including what what you and nursery know and do already) really helps the other professionals a) believe what you say about your dc, and b) take you seriously. And its worth learning early that the paediatricians are often ignored by schools cos 'that's medical, nothing to do with education' Bitter? Moi

[mrslaughan]

They don't grow out of sensory issues, but DS - who when he was younger had a lot of the sensory stuff you describe, now with sensory integration therapy - it has all gone.
If you can afford to get sensory integration therapy do it. DS sensory issues prevented him from learning at school, and now he is doing catch up.

My only caveat is that DS had seen a couple of OT's who did sensory stuff- but none made a difference. The one he see's currently (been seeing for a year - and are weaning him off, so to speak) has transformed his life.

[dietstartstmoz]

Our DS2 has HFA and massive senssory issues, he is now in Yr1 in mainstream primary. He does have a statement, but before he did we arranged a meeting with the SENCO and Head before he started and we outlined all the issues and support that we as parents thought he would need. Although this was part of our process to get DS a statement it did mean they were fully prepared for expecting there to be issues when he started. Is the nursery linked to the school your Ds will be going to, if so they will already have procedures in place for informing the school what the new intake are like. If not, it would be worth asking the school if they get information from external nurseries, if they dont it may be worth the nursery using the early yrs framework to identify where they think your DS is, and where he is developmentally younger than his peers. Our DS was referred to NHS OT by the paed, but the school would have done it. It was the same NHS paed who covers the schools by us and she was v good and helpful. In our experience the school were happy to listen to our concerns about our DS and could see he needed support.

[tigersmummy]

Watching this with interest as I'm sure my DS has sensory (and possibly auditory) processing disorder. Looking back these things were obvious but it took the school to suggest us seeing an educational psychologist (he started reception in September). 3rd meeting with her last week and she is referring him onto the next step involving many specialists rather than an individual which we are happy about. I have recently posted about this myself as dh thinks he may have autism (then again he was convinced it was ADHD which it isn't) and the ed psych said she wasn't qualified to diagnose but that there are signs leaning towards this. I'm not 100% convinced as many factors against - but SPD is something I'm reading up on.

Good luck and keep us posted.

[EyeoftheStorm]

At the moment my plan of action is to get referred to OT (I will also look into sensory integration therapy thank you mrslaughan). Have a meeting with school - I have two older children there and it is a small school so I am comfortable with head and teacher - explain about hydrocephalus and VP shunt and give them a heads up about sensory issues.

I want to be clear with them that if they have any concerns we want to know. I don't want to be over-anxious but nor do I want to miss anything that could be dealt with early.

Friends, nursery teachers and even DH think he's just immature generally, but I have a gut feeling that there's more going on than that. I am really happy with his paediatrician who I'm sure will help with necessary referrals.

DS2 is generally placid, laid back, chatty and sociable and I think this masks the day to day sticking points that I manage. Dh mainly sees him on the weekend when there are no time constraints or deadlines to meet - he just wants to hang out with his dad - and so he doesn't get the full picture either.

The thing is when DS2 was born and had the brain bleeds and then hydrocephalus, the docs told us he might not walk or talk. We spent 2 years waiting for those those things to happen and they did. Everything else is bonus. A huge bonus.

Thank you for your advice - it puts me on the right track and helps me work out the right way to go about things with the school.

[EyeoftheStorm]

Reread and saw your post about nursery dietstarts. That's really helpful as the nursery is not linked to the school. I will ask them to do what you suggest and get them to map out where they think he is on the early years framework.

[EyeoftheStorm]

Update: well, the OT was certainly an eye-opener. It is clear that DS2 operates well within his comfort zone and anything outside that is a huge struggle.

The OT says it is highly likely that he has dyspraxia and as I read more, it explains so many things. For example: he won't ever go down a slide. That's because he can't cope with the sudden onrush of sensation and lack of balance.

Also, he potty-trained easily and is dry at night, but we're having real problems with moving on to the next stage where he just goes when he needs it independently. The other day he held it from 9 am to 6 pm and this causes him stress and discomfort. But I watched what he had to do this morning: stand on step, turn round, balance while pulling his trousers and pants down, then sit down. It's complicated and it's a struggle - no wonder he avoids it.

We're going to keep seeing the OT. What I'd like to know is if you started targeting problem areas early, did this improve things for them later?

We're also going to get an educational psychologist to asses him so we can see the bigger picture.

I would really like to delay his reception start till next year, but have a feeling the LA will make it an uphill battle. We have the choice of going into the private sector - can they be more flexible?

[MareeyaDolores]

If he's really not ready for reception, even with support, then he just isn't. And the year in reception will only leave him with more issues, not less.

By all means fight to defer, but if you fail, don't stress about whether LA will 'make' him go straight into year 1 thereafter. At least you'd be sending an undamaged dc in, not one who'd had a bad first year of schooling.

My personal opinion is that relatively unstructured early years stuff belongs in homes (and nurseries) where there is space, flexibility, limited dc, god knowledge of 0-5y, and the child:adult ratios are ok. Not in a classroom, within an institution of 200-400 dc.

(Can you tell I wish I'd deferred ds1? )

[EyeoftheStorm]

It is his confidence that concerns me, Mareeya. He is a chatty, sociable little boy and at the moment the gap between him and his nursery peers is not so noticeable. I would hate his confidence to be dented.

He is a summer-born prem with hydrocephalus, a shunt and probably dyspraxia - anyone looking at his history would see a delay of a year in formal schooling could only be beneficial to him. But the LA will be inflexible. DH asked the admissions officer if anyone had been delayed for any reason. The answer was: no, never.

It's not only the OT that's going to be eye-opening, is it?

[MareeyaDolores]

If you're deferring, you're saying 2 things

1. I want him in preschool/ home in September 2013
   
2. He should be ready for reception in Sept 2014
   

The LA can argue about permitting or funding no 2 in their schools (you'd probably win eventually) but no 1 is your absolute right..