Erm - Sorry - Me Again - Had a revealing OT assessment with ds2 - someone hold my hand now please and show me the way

[LargeLatte]

Sorry, long again, and sorry that I feel like I am so take take take. But don't have anyone in RL to talk to as have experienced mostly 'there's nothing wrong with the boy, leave him alone', 'he's lovely just the way he is', and my personal favorite of the week 'is it just that he is backward, in my day they would have said retarded' - meant with the utmost affection but still hurt like a screwdriver through the heart.

DS2 (5yo) dx dyspraxia last month, after school raised concerns with community nurse.

Yesterday saw OT for 2 hours. She was fabulous. Great at keeping ds engaged but also letting him do his own thing for a bit. It became apparent that he is capable of a lot more than we believed but is reluctant to try due to fear of failure, and because he becomes very upset of he thinks he has failed (we absolutely do not make him feel this way, it comes from him). She could also see (and so could I for the first time) that ds is relentlessly seeking sensory stimulation.

OT is going to do a school visit, and then a report. I filled in a sensory questionnaire last night and that explained so much of ds's behaviour.

We are due to see Multi Sensory Integration Clinic next month as I had already requested a referal here on a hunch.

So two questions if you are still with me this far in (and thanks for your patience):

1. DS complains of pains in his wrist, ankles and elbows - but only when asked to perform a physical task, not during his rather vigorous free play. Where should I do about that as OT said its not her thing.

2. I see other mums having such a hard time getting the help they need, but to me it feels like we are heading in the right direction and I should just return the questionnaire, wait for the visit and report and pass it all on to multi sensory team next month. Am I being too laid back about it? Is there something else I should be doing.

Is he hyper mobile?

Sorry, yes, just return the questionnaire and carry on with the referral processes etc. there are no short cuts but once you are 'in' the system which you are, it gets easier.

Thanks. Paed said no he wasn't hypermobile, and OT checked as well and agreed. She said he had poor muscle tone, which I can't reconcile with his physical strength when lifting things (which he likes to do) or hooning around a climbing frame, going wrong way up a firemans pole etc.

My instinct is to do nothing about the joints and just keep a note if he mentions it unprompted again. It was odd that he was so specific about pointing to his joints in session, but had never said anything like that before.

Muscle tone? Low tone? But not hyper mobile?

Low tone can cause pain and fatigue - it takes more energy to use the muscles so kids tire faster. But that would tie with the dyspraxia dx? (and actually would make sense - it is probably only on his mind when he is doing stuff that he finds hard or boring lol)

Did she do a comprehensive test of his fine motor? How did he score on the assessment? How is his handwriting etc?

We had to stop short (after 2 hours) as he was getting tired and upset.

I haven't seen a report yet, but he can draw a picture of me, wrote down the numbers 1, 2, 3 and 10, wrote his name (a bit shakily) but 4 weeks ago he wouldn't even pick up a pencil. He stacked 13 small blocks on top of each other (which he wasn't asked to do as part of the assessment he just did it for fun), but then when asked wouldn't do it because he didn't want them to fall over. She did get some beads out and bits like that but it was hard to distract him from throwing himself onto the crash mat by that point. But he has been able to thread beads and buttons since he was 2 or 3.

What does having low tone mean? I always imagined it meant weak but as I said he can shimmy up a firemans pole, use monkey bars, pedal a go-kart, scoot a mile to the park, play for an hour then scoot back again, pulled himself up onto a very high physio bed (high enough for OT to look around thinking he must've stood on something to get up there).

Muscles are usually looser/ less tone, rather than being tight, so he might lean on stuff rather than sit up unaided, (what does he do at carpet time?) or 'prop' up on one hand for support?

Not weak as such, but tire faster. Dd2 has low tone but the grip of a wrestler lol.

Google 'low muscle tone in children' - babycenter has a good description, and makes the link with coordination issues, too.

He sounds a little more complex, in that he obviously has some sensory stuff going on, and maybe some behavioural stuff, too. I would just carry on with assessments and see where you end up. At 5 he should be well able to complete an ot assessment though, with the therapist able to keep him on track with a bit of encouragement, so the fear of failure stuff is interesting. Are they looking at social stuff or esteem as well?

Bang, not back. iPad.

You might (or you might not, lol) want to have a read of the ehlers danlos thread... Not sure if you've seen it? It may or may not be relevant, but might give you some tips for how to cope with the low tone stuff.

Lol at the iPad - mine always does that.

What does he do at carpet time - make his usual c shape with hisspine, slumped forward, hands holding head up and rolls his eyes up to the ceiling.

OK will look into low tone a bit more. Nothing has been said about self esteem, but I noticed on the sensory questionnaire that there were questions about emotional stability that described him very nicely.

I shall just consider myself lucky that we have already got all these appointments lined up and just go along with it then.

Teacher is stressing me out a bit because he keeps saying if he isn't seeing progress by half term he will need to involved 'outside agencies' - well we've already got the community nurse, paed, ot, and CPOC on board - not sure who else he wants to squeeze onto this train.

That's all good.

Ask the class teacher if they have put Ds on school action plus. Ask to see a copy of his iep. Iep targets should be set in conjunction with parents and therapists/ professionals where appropriate. In yr r, Ieps should be reviewed termly.

Don't take it as a threat - use it to your advantage to ensure they are giving Ds the support he needs.... And ask to have a meeting with the senco and ct to go over the iep and how they are going to support him to reach his targets...

I know he's not on school action and there is no iep - the senco was leaving and is down to one day per week and dealing only with statemented children. So I guess that is something I need to be pushing for.

As he has outside agencies involved, he should be on school action plus, not just school action. And yes, he does need an iep. Tbh, they aren't going to do a lot this year anyway, and hopefully by September you will have some more reports etc to give you a better idea. But I would be making an appointment with school anyway, and letting them know in no uncertain terms that you will be expecting this to be up and running in the new school year. And that it would be beneficial for you to know which teacher he will be getting so that she can be prepared.

Class teacher more than capable of drawing up iep and running it by the senco when she is in.
After all, teacher knows him best....

thanks for all your help. On phone instead of laptop so will do longer reply tomorrow. Cheers.

The senco is "dealing only with statemented children" ??? So are the other children expendable then at this school? Please tell me I misunderstood this.

It's only May - the senco should be able to meet with you briefly and draw up an IEP quite quickly. It's not THAT time consuming! And that's 2 full months he could be getting better support!

If the senco is not doing her job, someone else should be.

SENCO doesn't want to do her job, she quit and they begged her to stay so as I understand it she is doing one day a week. The drop-in times have been cancelled which I didn't know until I tried to drop in today and catch up about ds. I'm in school later for the afternoon so will find out who it is I am meant to be dealing with now and when I can see them.

And yes, at the moment I do think they see pretty much all the children as expendable, the school all round is in a bit of a state and trying to drag itself out of Special Measures, but I am done beating myself up over that one.

No reason at all that you should be beating yourself up over it. It's their issue, not yours.

I would be going right up the chain to insist that someone be assigned those senco duties. They CAN'T just say "well, we're not helping other children"... if the HT isn't doing anything, then I would go to the LA and demand that they sort it.

I am appalled that a school simply says "well, that's it - only children with statements get assistance, everyone else will have to go without."

You're better off getting the IEP off the teacher anyway, it means you can write it so that it's very relevant, perfectly SMART and reviewed on time. Theres no 'rule' about formats as far as I know; you may be able to get your county's preferred format online, or even ask the school office to email a blank one of theirs.

Sussex version

Herts version

And your son IS on SA plus if the outsiders are involved.

Thanks for all your help. Been quite down about it all this weekend as the OT session was a real eye opener,as was the sensory questionnaire, and it feels like we've got a long way to go and everything feels really dis jointed with all the different people involved.

But then the cheeky little bugger looks at me and grins and says 'I like falling over' and melts my heart again. And today I discovered he has a hidden talent for maths provided its on the iPad.

The support on here is a big help. Thanks.