Dyspraxia and meltdowns

[nuttyredhead]

Hey,
Ds8 doing academically ok at school but after school is a real problem.He comes home and has multiple aggressive outburst its like he is so overloaded from school that his little brain cant take anymore.I feel it is mental fatigue and sensory overload. I was told by the paed yesturday that he would have to learn to deal with his emotions and control the outbursts.I was thinking the outbursts were a symptom of him not coping?I do not recognise my son anymore,he is unhappy,frustrated,irritable and looks like a different child.

i need some reassurance. Has anybody had experience of these outbursts and what the cause is?
I am seriously thinking about a second opinion.

Kind regards and thanks for reading.

Hi Nutty,

I could have written your exact post tbh about my ds1 who is nearly 8. He is diagnosed with dyspraxia although i very strongly feel he is ASD/Aspergers. After school he is a nightmare, hates going to school, and in fact is off school today with tummy pains, which i am convinced are anxiety related. I have no practical advice, as we are currently awaiting help via cahms after paying to see a private psychiatrist...no-one will listen as they only see a compliant little chap whenever we go to an appointment. I have started to video incidents when possible as i am FED UP of nobody listening to me, am also keeping a diary about him, his behaviours and any upsets we have.....This might help you to pinpoint triggers and anticapate problems before they arise. We have notified changes in school routine, changes in his expectations of what will happen and bithdaty parties to be MASSIVE issue!

How does your son get on at school? My ds's teacher says that there are few problems but he is improving. I have little confidence in school though, as he is very clearly so unhappy there. We are looking into sending him elswhere in Sept as he isnt getting the 1:1 support he should be via school action plus for handwriting, organisation and social communication issues, has lost all the friends he moved from infants school with and hasnt made any new ones, and school wont support me in applying for a statutory assesment....

All in all, i have no answers, but can totally sympatise! Have to school nursery run now but will check back later

Hey curvychick
cool name. Thanks for the post.I am sooo glad that somebody else hs also experienced this.
Ds is doing ok academically but any changes in school routine are a major problem for him.He also does alot of selt stimulating finger flicking and head tapping at school but not at home.I also keep a diary. At the moment we are flexi-schooling cause he can not cope with a full day.The outbursts are far less now because of this,but i can always tell when he has had a tiring morning.

I too have little confidence in school,paeds or ed psyc.I spoke with dyspraxia foundation and they said it is normal for the outbursts in dyspraxia and that he is crying out for help in the classroom! how do i make the professionals listen. We too are thiknking about a private referral.
good luck with everything i totally know how you are feeling.

Nutty, i have no idea how to make the professionals listen-none at all!

The private psychaitrist that we saw was a bit useless to start with but came good i the end! We asked him to read all of the reports we have about ds1 prior to our appointment, as there are loads of asd traits documented in them, which in isolation dont really amount to much, but loads of his little oddities documented at each appointment, coupled with the sensory issues, bedwetting, dyspraxia, social communication problems all add up imo.Well, he didnt bother before the appointment and fobbed us off saying he needed some anger management sessions and is DEFINATELY not ASD....however, he rang me back the next day to say he had since read the reports and agrees that we need to investigate further, so Hallelujah! We finally have a breakthrough! He has been very supportive and for the £150 consultaion fee, he has gone well above and beyond what we expected him to do. However, we are now back into the NHS system, so what happens next, who knows. He has said if they refuse to investigate ASD, he will ask our GP to refer up to GOSH so we do now, at least have a plan, and the right people to help us get to where we need to!

We ahve also found a school about 45 minutes away from us for dyspraxic children and they also have a speech and lang department there, only snag is the 3-5k per term price tag! i am hoping that someone up there will give us a bit of a break though and that we will be able to access him a scholarship as he is so flipping bright, he just needs to be taught in the right way. If no jopy on that path, we are looking at smaller rural schools as he seems to do alot better in smaller settings where he isnt such a small fish in a giant pond.

Does your ds have outbursts at school or is it all directed at you when you get home? One professional we saw, said we should feel happy that he was comfortable enough to let himself go like thta with us?! That was when we turned to BIBIC, and he had 2 days of assesments done down in Somerset with them. They are FAB and would totally recomend them to you as you sound like you are in the same boat as us pretty much. They have given us a programme to help with the sensory stuff, loads of behaviour management help and the best bit, someone who actually gives a monkeys, who isnt being guided by budgets is at the end of the phone whenever you need some advice....

Sorry that all got a bit long!

Oh, also, if you are thinking of going down the private route, have you thought about claiming DLA for your son? We claimed, and were messed around for a year, but finally won at tribunal and recieved a rather large chunk of money from the DWP. We have put it into a special bank account and use that money to pay for any help DS1 needs, but doesnt get through the channels that he should! ie LEA and PCT!

Hey,
I am all at a loss at the min my head is spinning.We had a big meet at school yest with all the professionals,and today i am questioning my own judgement.Ds has autistic traits but i know we will never get that diagnosed.On the ados test he was 1 point off being on the autistic spectrum!!
I am sure they think its bad parenting,they look at me that way.

The school you found sounds great,where abouts are you in the country.I have been looking at secondary schools ds hits year 5 and i know he will have major problems in secondary school.I feel i may still be flexi-schooling if they let me!!

Ha ha we got turned down again with the DLA.I am in the process of appealing it.Yes the money would be good to access clubs and outside school stuff that would be suitable.Ds lacks confidence and is aware of his disabilities,won't join clubs or activity classes.

Does your son have strategies used in class for sensory issues?

Hey curvy

Forgot to ask whats GOSH?

Hey Nutty,

I too have days where i question myself, want to give up, and think that the 'professionals' know best......but they dont do they? We spend day after day dealing with our kids demanding, difficult and quirky ways. They meet them for half and hour here, an hour there and form all of their opinions on those glimpses of our boys. ( and my ds acts like a flipping angel whilst at the appointments and then goes off the scale when we are safely through the front door!) They do not know our children as well as we do! We know them best, we know what they can and cant handle, we pe-empt the problems, deal with the tears, tantrums and meltdowns. I dont take him along to these appointments for the fun of it, and i'm sure you dont either all that we really want it for our kids is for them to be happy. However, because we have kids that need special support to help them succeed, it means that we are costing 'the powers that be' extra money, and that is where i find i hit brick walls.....If he was a total nightmare whilst at school, attacking teachers and classmates like he does with his family at home, i dont think i would have struggled to get the pro's to take notice, but hey i'm just his Mum, what do i know?!

I saw someone write on here once that we are our childrens only and best advocate, so on the days where i want to throw all of the bloody pieces of paperwork i collect about Max out of the window, i remind myself, if i dont bother, no-one will, and my boy deserves all the help that he needs. So i write, phone, nag, cry, threaten, and every now and then, we move a little further forward and all of the hard work is worth it....

I totally know what you mean about people thinking it is bad parenting, sometimes, like you i question myself, and i know i dont always do the best job, but no ammount of bad parenting would make my son struggle to handwrite, wet the bed, fail to make friends, misunderstand meanings of things, trip over his own shadow, fail to process his senses properly etc etc The bad behaviour that we deal with is a symptom of the problems that are children struggle with everyday, and because we get very little support to deal with it, we just try our best and hope for the best as we have no other option! Our therapist a BIBIC called me yesterday afternoon, just for a chat,to see how we were getting on. She was lovely, gave me some more tips and said several times what a great job we were doing...an absolute breath of fresh air, and the bloody NHS could learn a thing or 2 from them for sure!

The school we are looking at is in Berkshire, althuogh we actually live in Buckinghamshire/oxfordshire border. I have a meeting with Max's current school and an advocate from the parenting partnership on 25th June to get the ball rolling with getting a statement of SEN underway. In an ideal world, i would start him at new private school in Sept on a scholarship, and then take on the LEA to get funding for his place via his statement......another battle on the horizon methinks Like you, i am desperate to get things in order now, as he wont stand a chance in secondary school...

WRT to coping strategies at school, other an a sloped writing board, nothing. BIBIC and OT have detailed loads of suggestions but school have failed to implement or maintain the support he needs.....i'm sick of trying to meet with them and ending up in tears of frustration-hence taking my sidekick from the parent partership to the next one

DLA a right buggers arent they? They really made me jump through hoops, and short f inviting the tribunal panel to come and live with us for a week, there was nothing more i could do. I would really urge you to keep pushing ahead, i know how frustrating, time consuming and miserable all of the forms and paperwork is but our boys aren't like their peers and need alot of extra support every day, and the tribunal panel arent really tat scary...well scareyish i suppose! However, if you are anything like me, my ds and his isoos are my specialist mastermind subject, so under their 'interigation' i had nothing to hide and was determined to say everything that i wanted to! We got awarded low rate mobility and mid rate care after a year long battle

Sorry my posts seem to get so long, i seem to have gone into overdrivehaving someone who 'gets' our situation!

x

Oh and GOSH is grat ormand st hospital, they have a centre for high functioning autism there, which is where we will plod onto next if we have no luck with cahms Onwards and upwards ay

He sounds just like my dd1 (6) when she gets home apart from she doesn't get aggressive (well just verbally aggressive), this week has been the worst, she is like a different child when she gets home from school, she argues about everything, shouts, moans, crys etc..
Dd1 has a DX of Aspergers but is being looked at by the pead as she shows signs of dyspraxia.

Hey curvy,
your post is like a breath of fresh air,you have lifted me no end.You seam so focused and strong.I am feeling better than i did on monday,the meeting knocked me but i am back and ready to fight the battle!

I have been in touch with BIBIC they are sending me some info and we will take it from there.

i am writing to my pead and i am going to tell him that i am not happy with his decision.I will continue to flexi-school George until he gets the strategies in place he needs to deal with a full day.I even offered to be his volunteer TA in the classroom, but it was frowned upon.

In amongst meetings with school and frequently nagging the teacher to implement the IEP and trawling the net for answers and support i have forgotten to enjoy George.
I prob not be saying that when he meltsdown due to change of routine,and he has been up since 6am, firing question after question at me!! lol

Thanks for the posts you have been great and have given me some ideas.

Take care.

anybody out there who has a 7 or 8 with dysprexia my daughter has recently been dignoased with it and im feeling very isloated and alone as she is in mainstream school .

Hey Livvy,
So sorry your feeling isolated and alone.My son too has Dyspraxia and is in mainstream.I have joined the Dyspraxia foundation they have loads of info on their website.They also have lists of people in your area that have children with Dyspraxia.I spoke with the coordinator for my area on Tues as i am too having a bad time,no support from school etc.It was helpful as she pointed me in the right direction.

Does your daughter have many problems at school and which professionals are involved in her care at the moment?

Is your Paed DR P Nutty or Dr B?

Hey wasuup
We got DR P.The clinical psyc said he is the best of a bad bunch! There are 3 in our area apparantly. I know he will do good for some and not others.

Yep that sounds like Dr P! We keep getting the wait and see come back in 6 months from him re are son having possible Aspergers but managed to get into CAMHs system by going private. Are you/Were you with CAMHs then re the ADOS we have our sons ADOS in a few weeks they have offered play assessments as well if the ADOS doesn't give a clear result.

wasuup, how did you go private? Ds is currently waiting for a camhs appointment but we have just been told he won't get one. There is only 1 doctor left in our camhs and they are turning away everything except urgent cases.

Ds is 9, has dyspraxia and I think he also has aspergers.

I phoned the private hospital up to see if they had anyone who could help and I knew another parent who had done the same thing so knew it was a possibility. The consultant clinical psych worked there on Weds afternoons and he agreed to see us. He also led the ASD team at CAMHs. After seeing us for a couple of sessions he reffered us to his NHS clinic as he thought our son had Aspergers.
So prob not much help if your CAMHs is understaffed anyway..

Dr p referred george for ADOS.Our clinical psyc wanted to do it but he had it done at Accrington by two speech and language specialists. George has definate ASD traits i feel more ASPIE but Dr P is refusing to diagnose.You seam to be getting a thorough assessment if they offering play assessment too.

Thanks. I think I will phone up the local private hospital and see if they have anyone who can see us. I have been down a few avenues and got nowhere, but never thought of that.

I don't know which area you are in but Belle Vue clinic is supposed to be good in Ormskirk area. Expensive though.

I wasn't that impressed with the CP's at daisyfield. I think I got carp one who had only just qualified!
I have a keyworker from CAMHs who is doing the assessment, a CAMHS OT has been into school and given them some ideas as well.

What sort of ideas did the OT from CAMHS give school to do.

We have a CP from daisyfield she feels he is ASD but again Dr P aint listening. I gonna get a private one maybe he will listen then.

He got the teacher doing a 10 min assessment and follow up program each day and the school are also listening know whereas before it was like "oh whats that mad crazy woman moaning on about now"!

Has Dr P took it to the social communication Panel or just come up with his own decision?

Hey wassup,
sorry i did not reply,i flake out come evening i got my own disabilities to deal with unfortunately.

Dr P took our case to the panel but they do not want to diagnose. I not fighting for asd diagnosis anymore jus need them to recognise he needs some help in class with sensory issues.

Jus been turned down for DLA again!! Gotta find some extra energy to take this to an appeal now.I would love jus one thing to go in our favour i feel i am constantly having battles. Joan of arc got nothing on me!!LOL

Have a good weekend.

Thank you and you. Yup its all been a battle uphill here too. I have just been through the statement process with my eldest and now am having to go through it with my son, LEA agreed a few days before SEND tribunal to assess. The Parent Partnership person in our area is ok have you been in touch with her at all?
Best wishes to you for a great weekend as well.

Hello all, just found this website and posts! read the first post and thought wow sound just like my boy. He is nearly 6 and can't get through a full week at school, he comes home and has meltdown! he also goes into meltdown at physio, doctors and any large cluttered rooms.

I have approached school about flexi schooling and now waiting for them to decide. If they won't agree then I will do home schooling as it is heartbreaking to see him so unhappy and missing out on his childhood as he is too tired to enjoy it!

Matthew also has hypermobility syndrome which gives him exhaustion as well and numerous extra problems.

He has a great physio and rubbish paed a good speech therapist and awaiting OT, his teachers are not good and the school SENCO is good in some areas and poor in others!

He has been tested for autism but the paed says he has some autistic traits but isn't autistic.

He is a very bright boy but just isnt reaching his potential as he needs more 1 to 1 help.

I am lucky, he gets DLA and I get carers allowance as he also has problems with his bowel control due to long term constipation which is possibly due to his hypermobility.

I have joined dyspraxia groups and hypermobility groups on yahoo as well and it is great to know I am not the only one out there with these issues, and have so far got some great advice and information.