Reassurance please!

[MeHearty]

Ok, this is my first post here so please be kind!

My ds (4.5) is currently at preschool and will be starting school in Sept. At the start of this academic year he saw a developmental paed then an OT and was diagnosed with some developmental delay with gross and fine motor skills, mild hypermobility and hypotonia, which is what we had been concerned about, but also some sensory processing issues. He hasn't actually got a diagnosis of anything (I expected dyspraxia) as he was premature and the paed thought he should be left to it for a while to see if he catches up.

His preschool got the local Senco in, and he was given an IEP, which has helped him make some progress. Today we had the review, and at my suggestion he has been moved up to Action Plus instead of Action, as although his gross motor skills are much better, his fine aren't really progressing and his sensory issues still cause meltdowns that will really affect his progress when he starts school.

So what I'm wondering is, have I done the right thing? Will being Action Plus make any difference to the help he will get? Should I be pushing to see the developmental paediatrician again to see if there are any specific diagnoses (like Aspergers or dyspraxia) that might make it easier for him to get more tailored help?

Has anyone else been through similar and have a positive outcome to share?

I can't generally see the benefit in a 'wait and see' approach if it doesn't help you to get some good support and interventions in place nice and early. The earlier the better IMO. I believe a recognised DX helps to grease the wheels in getting needs recognised and support provided.

If he's been seeing a Paed and an OT then he should be on Early Years Action Plus, the Paed and the OT are the plus, IYSWIM. Has the OT provided you and preschool with a programme?

Are you happy with his progress? Do you think that with the advice of the OT etc that his school will be able to support him and enable him to progress? If you think or suspect he's going to need more support than school would normally provide, usually one TA per class in infants, then you may be advised to look into getting a Statutory Assessment kicked off, in order to get a statement of SEN. The process should assess your DS's needs and define what provision is needed to meet those needs and write it all up in a legally binding statement. The whole process takes at least 6 months.

If you think school will be able to support your DS, then school action plus is where he should be, though the support provided in this case isn't legally binding.

Thanks very much for replying. He has seen a paediatrician once (she didn't notice the sensory stuff - was more checking his developmental stuff) and she discharged us so we won't see her again unless I ask for a referral. The OT didn't give us a follow-up appt, but did provide a v long action plan that preschool are working on with him. The preschool are going to get an OT in for his next review so I suppose I should wait to see what they say. The SENCO didn't think it was serious enough for a statement so hopefully school will do enough - though we don't actually know what school we've got yet.

Everyone I've met seems very reluctant to give him any kind of diagnosis as he's so young. I don't know whether I need to be more pushy or follow their advice.

Once you have your school allocated make an appt to see the SENCo. It's tricky, not all DC with SEN need a statement. SENCos often seem to say your DC isn't severe enough to need a statement, even when they sometimes go on to get one, though. The new school's SENCo might be really helpful and reassuring, or might not. I think I'd maybe wait until you've had a chat with them and you may have a better idea how to proceed.

I don't like the fact that you've been signed off by the paed despite there being some developmental delay and other issues. If things become more noticeable do you have an easy route back in to see the paed?

I think so. She seemed quite friendly and not averse to being contacted again, so I think I would approach her directly if I wanted another appt. and our GPs are quite good so I think would refer if necessary. Thanks for the advice re the SENCO. The preschool said they will have a handover with whichever school's SENCO in June so will see what they say.

"The SENCO didn't think it was serious enough for a statement so hopefully school will do enough"

Hi MeHearty. That sentence above is encouraging. Except that in my experience, most parents are told that. I was told that when DD1 was 3 years old. I was also told she would be 'fine' at Mainstream. Her Statementing Officer disagreed and offered us a place at Special School before I'd even asked.

Fine motor skills are, in themselves, fairly easy to work around in a school environment. The sensory issues add a whole layer of complexity.

Imagine him in a room with 29 other children, a teacher and possibly a TA. Will he cope with the noise, the expectation to sort himself out on the toilet, independent play, etc? If the answer is 'no' or 'probably not' then I'd get the request for a Statutory Assessment in this week.

The reason I say 'this week' is because the Statutory Assessment process takes 26 weeks from start to finish. If you apply tomorrow, you'd possibly have a Statement by September 12th. The longer you leave it, the later the process finishes.

If you do decide to give it a go (if you were refused, he'd stay on Early Years Action Plus) then you can get a template letter from ipsea.org.uk/What-you-need-to-know/Common-problems.aspx#RequestingAssessment. You would write that letter and send it to the Principal Special Needs Officer at your Local Authority.

They must respond to your request within 6 weeks, telling you that they either will assess, or will not assess and the reasons why. You would then have the right to appeal, if you wanted to.

Thanks for the link and advice lougle. I have thought about it and I think we will wait to find out what school we get then approach the head to ascertain exactly what help they can provide before we think about applying for a statement. Partly also because I worry that ds can raise his game (so to speak) in certain situations and I think too much help might be as bad as not enough. That probably sounds mad, but he is very canny and it is sometimes hard to tell what is genuinely a sensory issue and what is him playing up for attention so that someone will do something for him.

Fair point! I guess I am concerned that I am worrying too much about things that are relatively minor in the grand scheme of things. He copes well at preschool and as long as the school are prepared to put in place coping strategies then I think he will be ok.

Does anyone else out there have a dc with some sensory issues, a need for routine and delayed fine motor skills who has coped ok without a statement?

Sorry, haven't explained very well - he's been moved up to action plus as I pushed them by asking if he was really getting enough help and they said ok, maybe not, let's get an OT involved to help more closely with his fine motor skills. So the OT will hopefully be at the meeting in June.

I am hoping he is going to cope - he will just need some help and understanding at certain parts of the day, so I will have to find out from the school how much of that will be possible.