Floppy boy, friend problems, AS and school!

[debs40]

DS has Developmental Coordination Disorder and possible ASD. He is very floppy and hypermobile and finds sitting for any length of time very tiring.

He seems exhausted all the time. he has been chewing in school again - his shoes (he's very bendy), anything, you name it. I don't know whether this is to wake up his sensory system or because of anxiety.

His group of friends seem to be playing other games at the moment and, as I anticipated, this is causing him real problems as he doesn't know how to (or in fact doesn't want to) join in other games.

He said he has been sitting on a bench . We have one of his friends coming for tea tonight so that might help.

He's been coming home lunchtimes because he can't think of anything he will eat in a packed lunch in the hall which won't make him sick. He eats school dinner once a week - it used to be more but he wants to come home.

I freelance from home so it's do-able but hard.

He is being observed by the head of the ASD diagnostic team tomorrow so that might provide some assistance.I feel so sorry for him as he always seems so knackered.

I do wonder whether I should just home ed sometimes. He seems so vulnerable and it is so physically hard for him.

Oh gosh, I have one like this as well. He is nearly 9, hass DCD, hypermobile and I think autistic traits. He has been through similar problems with his friends, but is doing OK (touch wood) at the moment. When it as bad we were bringing him home for lunch and also thinking about home ed. I have got to go now but will try and think of ways we helped him at the time.

You have my sympathies. It is very hard to send them off to school when they are unhappy.

Hi Debs, ive been giving home ed some serious consideration. Its only the fact that ds desperately WANTS to interact with other children that is making me think twice.

Have the school been given any OT input or recommendations?

Hi Debs- how old is he? he sounds very similar to my dd1 (6) who has AS and possible dyspraxia, she's very bendy (can put her legs over her head). She is having problems with friends at school and often plays on her own which is starting to bother her (up until now she was happy to play on her own), she finds it hard to play the kinds of games her friends play as she can not run very fast (her arms and legs are floppy).

I am thinking of moving dd1 to another school.

I often think about home ed but TBH i don't think i have the brains to do it, i would love to keep them both at home so they don't have to go through the stress of school. Dd2 is due to start school in September and has more severe autism and she is not ready, i wish i could keep her at home .

I also worry about the lac of interaction if i take them out of school.

Hi

He is 7. We are seeing an OT and she has given recommendations about coordination but has just finished the assessment process and has yet to provide guidance on sensory and other issues. We are seeing her Monday so I will ask then.

I agree Claw and Marne, their obvious desire to be part of the group is what keeps you going with school. My son loves having friends to tea and parties etc even though he sees friendship in a quite one dimensional way sometimes - i.e. friends are for his benefit. But then he is only 7 and lots of grown ups are like this without excuse!

DS hates the running games too and just gets so tired with the school day. It's like he's fit for nothing when he comes home sometimes. I often have to give him a piggy back.

It is hard separating your own interests (the stress of battling for provision and worry about your child etc) with what's best for your child.

HEd would compromise my career even though I freelance but it would remove such obvious stress from our lives.

Totally agree Debs, it is extremely hard battling and worrying. I have to try and remove my emotions when dealing with school and treat it as some kind of business arrangement otherwise i would end up in tears. Its sad i feel like a robot at times!

That sounds like good news about OT.

How do think your ds would get on with HE?

I think my ds would get very bored.

I think he would really love being at home but I'm just not sure it's the best thing for him as he gets so much out of being in a group of friends and feeling like part of the crowd.

School are really trying at the moment too.

It's just a nagging feeling I have that, long term, he may not stand the pace.

Would it be possible to home ed him for 2 days and send him to school for 3? (not sure if this is possible) or send him to school just for the morning and teach him at home in the afternoon?

Think that might be a bit confusing and DS2 starts in September just to complicate matters.

I think I read on the HEd board that schools aren't happy with those sort of arrangements either.

We have an apptmnt on Friday with ASD head who is observing DS tomorrow, so it will be interesting to hear what she says.

DS has been passive and of no bother to school all academic year but now they are making the effort to bring him out of his shell, they are getting the tough bits too - the stressiness and frustration etc.

I got a note in the home/school book saying he had elbowed someone today which is unusual for him (in school). He told them he was tired and grumpy.

They need to give him breaks in the day

ds2 has Asperger's and dyspraxia and is hypermobile - when he was in reception and y1 we did flexi-schooling as he couldn't cope with a full week of full days - gradually we upped the amount of time he spent at school and now he's in y5 he's there pretty much full time

he still gets quite tired, but his stamina has increased markedly in the last couple of years, so fingers crossed that'll happen for your ds too

I do have to encourage him as much as possible to be active as left to his own devices he'd stay at home and play with lego all day, every day

How did school take to that basildonbond? Whose suggestion was it? Did it come from clinicians or ed psych or you? How many days did you start off with?

Oh, and did you need a statement to do this?

it was a joint suggestion from both me and the school - we started off with 5 mornings, then went to 3 full days, then 3 full days and 2 mornings at the Early Years Centre, then 4 full days and eventually 5 full days (most weeks).

However, I kept an eye on him and if I felt he needed a day off I'd keep him home - I also keep him off if we want to do a day out which we couldn't do at the weekend/in the holidays because it would be too crowded (ds doesn't deal well with crowds)

He had a statement from nursery, but also a very understanding head. His school is very far from perfect, but their sensible attitude to his attendance is something I certainly can't complain about. I suspect it helps that he's academically very able so doesn't need to catch up loads if he's off.

Well I have taken the decision to take DS2 (9) out of school for a year next year. He has hit a wall academically and socially (in fact regressed a bit socially) and has become stuck with some habits of behaviour (eg, stimming by running up and down along the edge of the playground) that interfere with his progress at school. He tics more after school and perks up and is more chilled at weekends and in the holidays.

I plan to give him a rest and then go back to re-teaching him the basics (I had quite a lot of success with this with his reading but he has little stamina after a day at school for other extra work).

I am trusting my instinct that this is what he needs and will also work hard to maintain his existing 'friendships' (however frustrating his progress is he does feel part of the school and enjoys familiar faces around him.).

I am a little worried about him being bored, we'll cross that bridge...

The emotional, social & sensory bits of the school day are just as exhausting as the physical.
DS2 (ASD & cp) Gets to come in from lunch 10 mins before the end of play & has 20 mins to himself in the library on a beanbag to himself.
It means he misses the first 10 mins of afternoon lessons but it has stopped him becoming distressed or falling asleep in the afternoon.
Its like a power nap without the sleep - although i think he has dozed off on occasion.

We did try bringing him home for lunch but found the transitions school-home & back to school were actually causing more tiredness & exhaustion as it was different routine & changes for him to cope with.
He is much better staying at school but having some rest time.

Thanks. Your posts really help me feel less isolated as people really don't understand why a 'normal' looking child, flops and lolls and seems tired all the time.

The community paediatrician said the school day would be exhausting for him and that we are doing well keeping him in school. But it is me doing it. School are slowly starting to help but in the sense of following suggestions without any real understanding so there are constant little issues about stuff and I feel I'm constantly explaining away things like him getting tired and stressed etc etc.

It's an interesting idea taking him out for a year. I have thought of this but DS2 starts this Sept so I'm not sure how I'd send one to school and keep one at home. I'd have to keep them both off.

Do you work wiggly? That is another worry. I freelance and I'm trying to finish a PhD but I get so little time as it is ..... although without all the crap that goes with school, it might be easier.

I wish I'd kept him off today in retropsect. I feel like I was setting him up to fail.

I don't work, well I help out on an ad hoc basis with DH's business, but I'm not really essential on a day to day basis, I am supposed to be a fine artist!

My DS3 started school this academic year, so far he is doing well and enjoying it, I have told him he can do the same when he is in P6 if he needs to (thinking it is highly unlikely he will end up taking me up on it).

DS1 starts high school next year, he is not brilliant academically and a bit of a worrier. I am anticipating that he will need a lot of help with homework etc., another reason to condense my help for DS2 into school hours, three sets of homework and extra work for DS2 plus after school activities is very hard to keep on top off.

PS. DS2 is very floppy too and has been chewing his clothes a lot lately.

It is my last chance really to catch him up academically before P7 when all the induction to high school stuff starts (which I would like him to take part in).

School want to start an IEP for him, which means (in my mind) that they no longer expect him to catch up. I don't agree, I feel they haven't tried any method of helping him consistently enough.

My son is on an IEP and SA+ and we are waiting for all the feedback from the external agencies involved before considering a statement request. However, even with a statement, I wonder whether his particular needs will ever really be met. Some children do not function well (for sensory and other issues) in school environments without alot of time, patience and engagement.

He might just be one. I just see this bright little boy lost in a sea of social rules and pressure and he's only 7 . He is a square peg in a round hole.