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Getting a child to school ??
  • E2011
    Posts: 7
    Hi I'm new to this but have nowhere to turn too and hoping someone may have some advice for me ??

    My son age 5 has been battling with anxiety since a very young age , we are currently in the waiting system for an ados assessment and under the child development team. From what I have read about pda it sounds just like him! It was like reading something written about my child.

    He started school in September which was a big move he fault against it for a few weeks but finally with big brothers help I managed to get him going in , the problem we now have is that every half term when he's due to go back he out right refuses and seems to be getting worse , the school don't really know what to suggest they have mentioned getting him there however possible kicking and screaming but I have found that to make the situation worse in the long run and also find it very difficult with 3 other children to keep in mind.

    Does anyone have any tips / strategies that they have found to work ?? I've suggested an hour , half day giving him two options only to see if he picks that way it's his descion ? he just doesn't seem to care would rather sit in silence doing nothing for 6 hrs!!

    If anyone has any help or advice it would be very much appreciated
    Thank you in advance
  • Holly59
    Posts: 1,789

    E2011 said:

    Hi I'm new to this but have nowhere to turn too and hoping someone may have some advice for me ??

    My son age 5 has been battling with anxiety since a very young age , we are currently in the waiting system for an ados assessment and under the child development team. From what I have read about pda it sounds just like him! It was like reading something written about my child.

    He started school in September which was a big move he fault against it for a few weeks but finally with big brothers help I managed to get him going in , the problem we now have is that every half term when he's due to go back he out right refuses and seems to be getting worse , the school don't really know what to suggest they have mentioned getting him there however possible kicking and screaming but I have found that to make the situation worse in the long run and also find it very difficult with 3 other children to keep in mind.

    Does anyone have any tips / strategies that they have found to work ?? I've suggested an hour , half day giving him two options only to see if he picks that way it's his descion ? he just doesn't seem to care would rather sit in silence doing nothing for 6 hrs!!

    If anyone has any help or advice it would be very much appreciated
    Thank you in advance



    Hi ,
    Welcome to the Forum. Firstly both yourselves and the school must use PDA Stratagies . Be consistent at home and school. Both keep a diary of events . If it's safe to do so take video evidence . Don't put yourself at risk .

    The school and yourselves can watch the Webinar about PDA and listen to Harry's You tube videos .

    You could try taking him into school say 30 minutes after the children have gone in , not the horrendous morning scramble .Give him a choice of two pairs of socks, trousers , tops , even to the stage of getting to an agreement with the school forget school uniform if it gets him there .

    No direct commands like get out of bed , do this do that . Open the curtains and talk about anything but . There's a lovely red tractor going past , there was an exciting race on TV . Make it a game to get him downstairs , just let him beat you all the time .

    If he sees you stressed they are super sensitive to picking up these vibes . Choose your battles carefully. Safety is the non negotiable one , the rest you prioritise.

    May be just a short time with the right Stratagies then slowly increasing the time factor. The key is thinking HE is in control although he is not . You could work with the school and offer two home times. 11.30 or 12.00 .

    There are links for teachers on here as well.

    http://www.pdasociety.org.uk/education

    Join a support group if one near you . Most parents won't have a diagnosis . You will learn more from parents and this Forum than anyone .

    http://www.pdasociety.org.uk/families/support/local-support-groups

    http://www.pdasociety.org.uk/resources/external-links/blogsandfacebookgroups

    If you can't see one listed , contact the email address at the top of the page and they will advise you , lots of new ones sprouting up all over.

    My youngest is at College, he is now 19 and It's still stressful but understanding the reasons why they do it sort of helps . I need a stiff Gin +T by the time he leaves home , that was 06.20 this morning .

    Don't forget what works one day won't work the next but don't give up , be consistent and you will notice a change if it's PDA . Has he been tested for Dyslexia or Dyspraxia , that might be causing issues .

    Good Luck

    Pat xx
  • PlanetAutism
    Posts: 3,219
    We've had various levels of school-refusal from both ours. Eldest's lasted 2 years. Youngest is already saying as the holidays draw to a close that she's not going in on Monday. I turned it into a joke to distract. Can't entertain that!
  • Holly59
    Posts: 1,789

    PlanetAutism said:

    We've had various levels of school-refusal from both ours. Eldest's lasted 2 years. Youngest is already saying as the holidays draw to a close that she's not going in on Monday. I turned it into a joke to distract. Can't entertain that!



    We have had School refusal as well . Another issue I had was sleep deprivation due to sensory overload during the day and the refusal of the school to put the support in till they had a diagnosis . Later found this was illegal . ( Scotland ) . The high anxiety went off the scale hence the 24/36 hours all night benders . I have just had this happen again due to anxiety and exams .

    https://spectrumnews.org/features/deep-dive/wide-awake-why-children-with-autism-struggle-with-sleep/

    I am not sure how much homework they get at this stage but if it's a real nightmare might be worth asking School if he can be excused . Worn that tshirt as well.

    http://www.child-autism-parent-cafe.com/homework.html

    Pat xx
  • E2011
    Posts: 7
    Thank you for your suggestions I will have a look at the links. This is why I wanted to post in the forum as I was trying to explain to the school how we should be using strategies for pda but I'm unsure they understood , he teacher especially seems to be very patronising and makes me feel like I'm over exaggerating, Or trying to be overprotective!

    I haven't yet managed to get him in school uniform at all since he started in September but I decided that's the least of our worries for now, He won't put on a p.e kit either!
    The school kept saying that he was doing well once I had got him going in but I realised that he was happy with the routine we had set up , if I took away his big brother taking him into his classroom in the morning he would then go into meltdown mode and wouldn't want to go in ..


  • Holly59
    Posts: 1,789

    E2011 said:

    Thank you for your suggestions I will have a look at the links. This is why I wanted to post in the forum as I was trying to explain to the school how we should be using strategies for pda but I'm unsure they understood , he teacher especially seems to be very patronising and makes me feel like I'm over exaggerating, Or trying to be overprotective!

    I haven't yet managed to get him in school uniform at all since he started in September but I decided that's the least of our worries for now, He won't put on a p.e kit either!
    The school kept saying that he was doing well once I had got him going in but I realised that he was happy with the routine we had set up , if I took away his big brother taking him into his classroom in the morning he would then go into meltdown mode and wouldn't want to go in ..




    I was blatently ignored for years . Unfortunately I was up against the I have 20 years experience Brigade, I have a Teaching Degree , I know best ! You are just a Mum .

    It's taken till College for the youngest ones Tutor to listen to the story, put in PDA Stratagies. Work together as a team . Tweaking as we go . Inspirational team on board now .

    Is there a SENCO or Head you can approach for help .

    Presume you are in England , the Laws are different in Scotland . Ours are back to school/ College now .
    I presume you are aware of ipsea ?

    https://www.ipsea.org.uk/

    What happens, your example of sitting there for six hours doing nothing , it's a coping mechanism, he is switching off to all the demands, do this do that , the anxiety is extreme . It's not that he is lazy or naughty . Add the sensory overload . A strong determined teacher .

    http://community.fireflyfriends.com/blog/article/autism-why-i-describe-my-daughter

    Ring any bells ?

    Planetautism and I have had some right difficult characters along the way . When you get a nice one treasure that teacher.


    Pat xx
  • E2011
    Posts: 7
    Thank you again it's so nice to be able to talk to others that understand without me having to repeat myself over and over !

    That is a very good point I have never thought of it as a coping mechanism! He did also spend the majority of the two weeks holiday in his pjs in his bedroom, I think one of my biggest problems is that he doesn't trust me he thinks I will take him to school and pretend we're going else where.
    (This is what I was advised to do in the past to get him to nursery to try and avoid the meltdowns or climbing out a moving car!! Now obviously I have learned and researched pda I know it'smost defiently not the way to go!)

    The school doesn't have a very strong senco/unit since September all new staff took over , there has been a lot of children leave and move to schools that will listen and help with there needs, which is obviously very unsettling I don't get very good communication from the school , I keep holding on with hope it will get better!

    Thanks again for the links I have never heard of ipsea.

    Ps: yes I'm in England x
  • Holly59
    Posts: 1,789

    E2011 said:

    Thank you again it's so nice to be able to talk to others that understand without me having to repeat myself over and over !

    That is a very good point I have never thought of it as a coping mechanism! He did also spend the majority of the two weeks holiday in his pjs in his bedroom, I think one of my biggest problems is that he doesn't trust me he thinks I will take him to school and pretend we're going else where.
    (This is what I was advised to do in the past to get him to nursery to try and avoid the meltdowns or climbing out a moving car!! Now obviously I have learned and researched pda I know it'smost defiently not the way to go!)

    The school doesn't have a very strong senco/unit since September all new staff took over , there has been a lot of children leave and move to schools that will listen and help with there needs, which is obviously very unsettling I don't get very good communication from the school , I keep holding on with hope it will get better!

    Thanks again for the links I have never heard of ipsea.

    Ps: yes I'm in England x



    http://www.snagglebox.com/article/99-more-autism-questions

    Spending time in the same clothes is common . One of the issues in Autism is prediction . Simply put , as you know it's a neurodevolmental issue , the messages not get passed accurately. It's a lot of issues put together ,. Spending your time in your bedroom is a coping mechanism.

    Think about going in a bath / shower. If your hearing is super sensitive the noise of the shower. Senseory, the water might hurt , the smell of the shampoo , towels hurting the skin . Think over under sensitive to the senses. Touch , taste , smell, noise etc.

    The Staff telling you to tell him to pretend you were going somewhere else but school is shocking . What absolute plonkers . That needs to on our wall of fame of the unbelievable replies . It's extremly long I can assure you. You need to build the trust for him to feel safe and reduce the anxiety.

    Honestly if you can I would certainly consider moving him to a school that will help . You are nearly at the end of a school year and no improvement it ain't going to get any better . Trust me , been there, done that .


    http://www.pdasociety.org.uk/resources

    Books two , three and four are excellent .Book number two is your bible .

    Have you read the Reason I Jump . Brilliant book, that explains the Autism Part.

    You can apply for DLA without a diagnosis but you will need help and support . Trust me it's hard work .

    You can also ask for a Carers Assesment of your needs especially with other children involved .

    http://www.carersuk.org/

    I also suggest you get as many folks on your side as possible . Use your local Councillor/ MP .

    http://www.parliament.scot/GettingInvolved/Petitions/PE01625

    I am the main Petitioner of this Petition going through the Scottish Parliament at present . Our journeys have been horrific like so many on this Forum.

    http://www.pdasociety.org.uk/forum#/discussion/5515/eating-disorders-and-pda/p1

    How about food issues ? A lot of folks on the Spectrum have issues .

    http://evolutian.wixsite.com/planetautism/infofactsheets

    These info sheets are great which Planetautism has on her site , she has a FB page as well .

    http://www.crelling.com/

    Very posh but you can get Simple cheaper locks , just google have a rummage on the Web .

    http://suelarkey.com.au/wp-content/uploads/2015/05/Sensory_Meltdowns_vs_Behaviour_Meltdowns.pdf

    http://www.autism.org.uk/about/behaviour/meltdowns.aspx

    Hope this gives you a start . There is a lot of reading involved . It's like a jig saw . Keep going .

    You are doing a fantastic job . The positive part is that you have spotted the issues early . Mega important.

    Make sure you keep a paper trail , a record of who you have contacted .

    http://www.autismeducationtrust.org.uk/good-practice/written for you/parents-and-cares.aspx

    http://www.autism.org.uk/about/in-education.aspx

    http://www.pdasociety.org.uk/forum#/discussion/2892/can-some-one-in-laymans-terms-explain-pda

    Great explanation of PDA.

    You will actually learn to split the issues into Autism and PDA . A lot of the issues overlap so as I said earlier it's sifting through facts to get answers .

    Pat xx




  • Annie0705
    Posts: 2
    I am currently having sporadic school refusal episodes with my son (10 years old). He will be fine for several weeks but then we go through a period where he will refuse to go a couple of times a week. I'm thinking he is hanging on in there but then it all gets too much and he can no longer cope with the demand. This has been occurring for coming up to 2 years now. We have no diagnosis, have been through camhs who threw it back as a parenting issue, gave us some strategies that worķ sometimes but not most of the time, and then discharged us when we had a "calm" period as "things are improving".
    My son is at home today, symptoms of tummy pain, nausea and headache. I've met again with the school family health liaison member of staff this morning, who 3 months ago was going to look into referring to the school nurse, but hasn't. I think it is the head who is blocking this - they have just phoned me (lunchtime) asking if they could come round to try to get my son into school for the afternoon - this is something they suggested during the previous episodes and told my son that this would be what would happen if he wasn't "genuinely poorly". He feels like they don't believe that he feels unwell and is scared at the thought of them turning up at home (his safe place). I have suggested on several meetings with them that I believe he has aspergers with a pda profile as everything I have researched, and it's been a lot, points to that. I've sent them documentation on strategies to help, links to the pda society website etc, but it appears they have disregarded it all. This morning I again reiterated my thoughts, to be dismissed with a "you mustn't just jump to a diagnosis".
    I've refused to allow them to call round today as I'm sure this will make him worse, but I'm worried that I will be seen as awkward parent and get into trouble myself for not making him go to school. I have a gp appt mid may (it takes weeks for us to get to see a gp), but not sure if we'll get anywhere with them and don't know where to turn in the meantime. ](*,)
    I've spoken to many people who know my son and have experience of children with autism or special needs about him and all have agreed that he shows traits óf being on the spectrum. Hubby however just sees him as a naughty child who won't do as he's told, and he's disregarded all the info I've shiwn him too!
  • PlanetAutism
    Posts: 3,219
    What they have to understand is that anxiety, which is a real condition and deserves as much respect as a physical condition, produces real physical symptoms which they have to respect. This is still a health issue no matter what, so they can't fob this off as pretending and what a cheek to say he's not genuinely poorly. People can end up having heart attacks and stomach ulcers from chronic anxiety, so that attitude is a no-no.

    http://www.mind.org.uk/information-support/types-of-mental-health-problems/anxiety-and-panic-attacks/anxiety-symptoms/#.WP3t-fnyvIU

    Did CAMHS diagnose anxiety?

    It's all very well for them saying don't jump to a diagnosis, you aren't, you have had a 2 year period of difficulties without an underlying cause identified so you have been in this for the long haul. Again a cheek of them to say that. Ignore professionals who start with the comments about not wishing to label. It is the diagnoses that produce the right support and understanding - which they have proven by not doing a single thing until now to help him with techniques he needs as per your official information on PDA!

    Bypass the school, forget the school nurse. Go to your GP to request a referral for PDA assessment, out-of-area if necessary via an individual funding request to the CCG/CAMHS.

    Score him on the extreme demand avoidance questionnaire, keep a daily diary/log of incidents, any audio or video of his behaviours will be useful and the clinician's PDA booklet from this website which you can download. Explain to the GP PDA is a very specific form of ASD which needs specialist assessment as sometimes PDA children are not diagnosed through an ordinary ASD assessment as it needs different expertise and clinical tools.

    Ignore husband for now, this seems to be a typical reaction from dads. It can be very hard for them to accept having a child with a difference or disability.
  • PlanetAutism
    Posts: 3,219
    Also, point out to any professionals, school, CAMHS, whoever is or becomes involved, that the government themselves state early intervention is key to best outcomes for children with neurodevelopmental conditions and that cannot happen (it's already late for him at 10yo) with faffing around falsely accusing your parenting or not looking for the underlying cause. He is at a critical age as he will start secondary soon and if he doesn't have a diagnosis by then, trust me things will get a whole lot worse. Professionals have a duty of care to children to ensure their difficulties are diagnosed and supported. Remind them of that!
  • Annie0705
    Posts: 2
    Thank you!
    I do have a gp appointment for him coming up so will ask for a referral in the way you have said. And do my best to stay strong and fight my son's corner. I have started again keeping a diary, sadly i stopped when we started seeing camhs - they did agree that he was showing levels of anxiety, but all their advice revolved around getting to the bottom of what exactly he was anxious about - they didn't seem to understand that there wasn't a specific "thing" that could be identified and therefore fixed. And then rewarding any small steps towards facing that specific worry - well if life itself is causing the anxiety and the consequence and reward thing doesn't work then it was always going to be a non-starter. One of the frustrating things, which I'm sure everyone on here can relate to, is that some of the strategies that seemed to be helping for a bit can on another day have the opposite effect.
    Yes, I do feel the pressure that I need to get proper help in place soon, before he starts in the secondary school system - that deadline is looming ever closer.
    I scored him at 50 on the edaq, so just at a level indicating pda may be there, although I know on its own it isn't a diagnostic tool.
    Thank you again. It's a relief to find somewhere I can voice my concerns to people who understand and don't respond as if I'm either completely mad or a weak mother who is allowing her children to walk all over her!
  • Holly59
    Posts: 1,789

    Annie0705 said:

    Thank you!
    I do have a gp appointment for him coming up so will ask for a referral in the way you have said. And do my best to stay strong and fight my son's corner. I have started again keeping a diary, sadly i stopped when we started seeing camhs - they did agree that he was showing levels of anxiety, but all their advice revolved around getting to the bottom of what exactly he was anxious about - they didn't seem to understand that there wasn't a specific "thing" that could be identified and therefore fixed. And then rewarding any small steps towards facing that specific worry - well if life itself is causing the anxiety and the consequence and reward thing doesn't work then it was always going to be a non-starter. One of the frustrating things, which I'm sure everyone on here can relate to, is that some of the strategies that seemed to be helping for a bit can on another day have the opposite effect.
    Yes, I do feel the pressure that I need to get proper help in place soon, before he starts in the secondary school system - that deadline is looming ever closer.
    I scored him at 50 on the edaq, so just at a level indicating pda may be there, although I know on its own it isn't a diagnostic tool.
    Thank you again. It's a relief to find somewhere I can voice my concerns to people who understand and don't respond as if I'm either completely mad or a weak mother who is allowing her children to walk all over her!



    Don't forget the questionnaire is a guide . Mine scored High but the more I learnt as I went along the Higher the score got . It's deciphering the questions as well. Mine had speech issues, one was difficult to understand and talked too quick the other had difficulty with sounds .

    Good Luck . Get as much evidence as you can, including school reports to show to GP . Have the issues listed and referred to the questionnaire. Do it as simply as possible so your GP understands.

    Pat xx

  • PlanetAutism
    Posts: 3,219
    That's very true what Pat says. You have dawning realisations of certain behaviours applying to relevant questions.

    Do it as simply as possible so your GP understands.



    Loving that comment Pat! ;)

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