Ben10? Amapoleon? Anyone who was around to talk to me about RRT and multi sensory integration

[LargeLatte]

CPOC appointment for ds1 (7) and ds2 (5) was today. No relflexes assessment yet as that person off work, but looked at sensory integration, which was pretty terrible in both ds's.

Got lots of exercises etc etc to do at home, and overall while I feel sad at seeing how hard they found some of the tasks, I am relieved we are moving in the right direction.

But just one thing's bothering me.

I know that clinic is not for diagnosis, but the boys results from the tasks were almost identical. At the end of ds2's assessments, when I had been given the millionth example of games we can play at home that look astonishingly like the stuff that we have been doing since they were toddlers (clapping in time, nursery rhymes etc), I was feeling a bit like all the times when the HV helpfully told me to 'play with my children' - so I asked the Dr that considering I hadnt just put the kids in a box until it was time to start school, I had played with them, sung nursery rhymes, done mother and toddler groups and baking and crafts, why were they both struggling so much. She said that as their profiles were near identical she would imagine 'there is something genetic at play here'.

What next? Shall I just continue with what I had planned which was to gve the exercises a good shot and see how we are going by Sept (that progress is made, not that everything is A-OK).

Maybe I'm just feeling bruised that I know kids that get plenty ignored until its time for school and they are well behaved and wouldn't say boo to a goose, and I've got.....ermm a couple of live wires who right now are struggling to cope with normal life, and since they are both like that, it looks like I am just a terrible mother.

Off to cry into a glass of Pimms.

bumping as I am still feeling pretty low about this today

the exercise really cant do any harm & as you say you've been doing it already so have obviously helped them loads.

I can only recommend a full sensory assessment by a specialist sensory OT that looks at all the sensory system, carried out in conjunction in our case with a specialist physio.
The full assessment took several sessions & then a few sessions with me & dh explaining what was going on & the neurology etc.

Only then could we really target proper exercises & the difference has been amazing.
You are entitled to feel bruised, you are not a terrible mother & you know that so dont let anyone shake your confidence.
You may or may not get a dx or cause for your sons difficulties but you are doing the best by them by concentrating on therapy to help them

Thanks slacklucy.

My head is spinning today and I just feel terrible - scared at what we do next, and a bit overwhelmed.

I knew ds2 had problems, he's had problems since he was a newborn so although I always feel disappointed for him, I find it easier to cope with.

But ds1's assessment was a shock, and i have no idea how that boy has been coping in school for so long. I feel terrible.

Sorry - I know I am wallowing, I just need to for today I think, then tomorrow I can pull my socks up.

DS was first seen in the CPOC clinic back in 2008. I know it is overwhelming to have so many exercises to do and until you get to the later levels they do seem like games you have been playing for years. DS was more able to do the exercises in clinic and it is extremely important that DC experience success as the physiological aspects of stress (failure) like the release the chemicals and hormones affect brain functioning negatively.

For example, the clapping exercise is to improve listening skills as a lot a DC rely of visual cues - Dr Grounds usually test by asking them to match clapping with eyes open and then with eyes shut. Often with eyes shut DC cannot match the beat. So first with vision, then back to back without vision in a quiet environment with a single beat, then matching more than one regular beat, then with added distracting noises to simulate a noisy classroom, then introduce clap patterns to improve short-term auditory memory in a quiet environment. Then you move onto random sounds rather than just clapping - picking out one sound from amongst others. Then you go back to a quiet environment and practice digit recall, repeating a phrase or carrying out an instruction (without eye contact). Then increase the backround noise and repeat. Then you move onto numbers and get DC to listen out for a particular number and count the number of times it features. Then single letter sounds, then blends and then finally listening for sounds and blends in words.

Nobody does this stuff as a matter of course and I am sure Dr Grounds was not being in any way critical of your parenting. She is actually an amazing doctor and has been extremely supportive of DS over the years. Its thanks to her writing that he was at risk of developing a strong school phobia that he transferred primary schools to one which runs an Early Bird club which was set up with the CPOC clinic. Lesley Cox who does the retained reflex testing is also very supportive. The best thing to do is to Google. Also consider that this may be the first step rather than the last and you will need assessments and/or diagnsis carried out by others. You might not need them now but these things take time and so a 'belt and braces' approach might be called for.

Good luck with the exercises

Thanks Keepon.

I didn't intend to sound critical of Dr Grounds - I thought she was great.

I just can't believe how far we've got to go. For example with the visual tracking where the lollipop stick is moved in a lazy 8 neither child could even answer the question 'what is your name'.

With the clapping neither child could keep time even in the silent room, with no distractions and with their eyes open.

The hardest thing is going to be getting a mix of these exericises done every day, but making sure they are achievable so the boys stay motivated. Have set some time aside this afternoon to go through their folders and write out a daily schedule for each child to make sure we get a mix of skills, and plenty of opportunities for success every day.

I found it hard to do the exercises every day never mind DS. Getting started was the hardest thing as DS would repeatedly fail and quickly become overwhelmed. Dr Grounds said keeping DS calm was the priority and not to worry about missing the odd day. DS had CPOC exercises on his IEP. After initial problems I found that DS was progressing through the exercises 1:1 with me at home but they did not result in progress in the classroom - not seen to be relevent by him - not very good at using skills developed in one setting in another. Are your school willing?

The school are frankly in a bit of a pickle.

The SENCO resigned, but they couldn't get a replacement so she is very very part time and will not be there in Sept.

Ds1's CT has just gone on long term sick so I am not expecting to see him again this school year.

The HT is temporary and will also be gone in Sept.

I am clinging on to ds2's CT who is brilliant, and is also head of KS1, so also covers ds1 for now. Unfortunately he is also temporary.

After brief discussion with SENCO today I think that if I can pick out one or two things I want the school to help with they can go in an IEP and they will be supportive. So I'm going to make sure I've got my head around what ds's need and how that can be best met at school and home, before I book meeting as want to be very prepared.

hi Largelatte

We went to see Dr Grounds last year and like you she found loads of weaknesses. This had come on the back of a 25 pg report from our private OT assessment. I found it all very overwhelming and tried to do too much with DS as we also had lots of OT to do. Some of the exercises were OK like the auditory memory. However the eye tracking with the figure of eight etc were impossible for him to do and neither of us had the patience. He just couldn't concentrate no matter what time of day we tried. I have since been v ill myself and we need to restart the exercises. Just try not to do too much soon quickly as it is easy for them to become resentful if done wrong as I did.

Our school said that they would not be able to do any of the exercises which made things v difficult for us.

Concentrate on getting exercises on the IEPs - don't worry about the staffing problems - the exercises are usually done by TAs anyway and it is the attitude of Sencos that is important not the length of their contract.
I'd take half-decent but temporary over dismissive and permanent any day!

Thanks both of you.

I spent an hour (in the sun) going through all the exercises for both of them. Have put together about 10 minutes worth per evening for each child so will see how we get on.

Started a reward chart a week ago for ds1s eczema creams and ds2's OT exercises, with a view to adding these exercises in as an extra opportunity to get a sticker, so hopefully they will have at least a little motivation to get cracking on it.

SENCO has said they won't do the exercises at school as it is a medical / behavioural issue not a school one - I find that a bit odd as ds1 cannot learn from the white board and ds2 cannot hold a pencil so looks like school issue to me. And I know that they have started a 1-1 session each week with ds2 to do some OT exercises, as soon as they got that report in. Its like these people really want to help, but don't want to commit.

What adjustments can I expect the school to make? A year ago it was discussed that ds1 would benefit from print outs in front of him going over what had just been discussed on the board then a TA working 1-1 with him for a few minutes to get him started on a task. This was suggested by the SENCO due to some S&L problems, which have since improved, so that change was never put in place - but I think it would really benefit him.

If they have got slides up on the white board then then it should be very easy for the teacher to print out what they are talking about for him to read. If the SENCO has suggested it why hasn't she implemented it?! Aaargh!

I ended up going to the head teacher in the end as the SENCO was so crap. Things actually started happening then.

I would love to talk to HT about it but so far this school year we have had:

HT on long term sick, HT return, HT sacked, Dep H take over for 6 weeks, Temp HT in place for 2 terms.
CT great, CT on paternity leave, CT comes back, CT off on long term sick
KS leader great, KS leader leave for maternity leave, temp KS leader in place
SENCO had major unexpected family drama so had a lot of time off before christmas, came back, resigned, couldn't find a replacement, so she is now on one day a week doing paperwork and there is no one in place.

Trying to find someone who works there, is good at their job and will still be there this time next week is a bit of a challenge. Tha's why I am focussed on getting it in writing before the summer hols, with a view to getting it implemented next school year under new CTs, and new HT who is on at least a one year contract, and hopefully a new SENCO who works more than one day per week.

Is another school possible? That sounds a nightmare esp when trying to get support for a child with SN.

Trying to get support for 2 kids with SN now :)

Frankly it is a total nightmare, but this year will be the worst of it, next year will be tough, and after that things will get better.

Both kids are very happy socially at the school, and despite its many acacdemic and leadership failings there is a lovely inclusive community among the children which I know is not available at the alternative school.

The school is now an Academy and is run by same people who run local secondary, which they have done wonders with, really turned it around. So I have faith. That 2ndry is also pretty good for SEN I've heard.

But yes it has been a nightmare, and I can't wait for the Summer holidays.

Did one of the listening games with ds's and dh last night - tonight will do that plus a visual exercise - going to build it up an exercise at a time over the next week.

CPOC exercises do not teach behavioural skills - all the exercises relate directly to skills needed to access the curriculum - ocular tracking, automatic hand eye sequencing, listening skills etc. The idea is that DC can cope better in the classroom environment not in Tesco!

However, it is no great surprise that the school will not do the exercises. You may want to consider private EP assessment. DS (11) and us as parents had a terrible time until assessment ended the debate. CPOC do not diagnose SpLD but the manifestations seen in the tests/retained reflexes are commonly found in SpLD. Unfortunatly schools can be somewhat dismissive.

Hi really sorry i have only just seen this. I've been in hiding hehehe. How are things going now? How are you feeling? PM me if you fancy a moan, rant, weep x