Need Advice

Hi All, Just really taken 1step forward then  10 steps back again....a few weeks ago now i was given really good advice here regarding my son who has left hemi cerebral palsy and ASD  ater i attended his first caf meeting after he left mainstream for special school he also has learning dis,  the point was at the caf i was disgusted that the ot that assesed him when he was 8 at the DCD Clinic came to th CAF she has not had anything to do with my son before are after the DCD Clinic, she rang me at home and asked his needs i told her the basic needs over the phone she went into his school the following day for a hour to see him , at the CAF nounced she could see no problems at all , he has balance issues, wars a AFO she said she walked him upstairs no prob , he caught a special ball no problem his writing was excellent , shoelaces no problem , interacte appropraietly ect ,   my son has all these problems also cant ride a bike , and haas toiliting issues struggles to clean himself so avoides the toilet in school she told me he does all this , so i told her i was shocked as he does have these probs and doesnt go to toilet at school to move his bowels, only for to wee, and the nurse at the school said the same , the ot didnt like it at, ect  ect  then went on to say she didnt think his anxietys were ASD  roblems at home""""    i just got out of their asap  , well i spoke to hsi consultant who was annoyed , whom i see next month i rang the school and told her i did not want her at the caf as i no longer wanted her involvemnt , i have a caf at th end june ,  the ot also said he done his laces no problem, i told her he cant do them she argued he did , he cant as he cant get the tension and forgets which way to loop them  he does try but when he runs his shoe flies off, she stated she would come into schl to show him the correct technique for doing his laces , i said not to bother as mam n dad has always done this for him!!!  i feel v let down , anyhow his consultant sent a letter  they say they never knew his complexity of his problems ,  they didnt see he had a written diagnosis , even tho i told them i dont count, no apology from ot, bugs me to think she was the one that stated 2yrs ago he had global motor skill probs fine msk probs but cant see it now, he also saw a incontinence nurse who has gave him movicol i told her he had this last year of his consultant she said the meds hes on ar eno good and he has to take this , he vomits taking it, put it in a fruitshoot everyday?   needless to say he wont take it, i feel im going round and round in a viciouse circle with all different proffesionalls , who all give opinions but dont listen ,, aaron always has had toiliting problems theo ot said he hasnt , she has never been involved at all so what woud she know, she said she donre the peg test on the back of his top andd he removed them no problem , so he cant have toiliting needs  , where the hell do i go from here i ask , jus tfeels im on a merry go round keep getting undermined , hes just came out of hospital after his botox injetions and no therapy at all from anyone  , im soooooooooooooooo fed up of it all x   so sorry fofr boreing you with all this blurping on :(((((    x

Parents
  • Hi patrice,

      Just to say, what you are describing with different presentations in different settings is quite common. I've read it time and time again on this forum. My theroy is that the child holds onto their behavior and emotion so much at School that the outpooring is like a tsunami of emotion once they move to another environment. My son does the same. At college he's constantly fearful and expected to conform, as soon as he gets home he kicks off. Often rude, often agressive. Since he's left College a calm has desended on the house that I cannot begin to describe. Since most of his life has been spent at School, other than during School holidays, we've seldom experienced such calm on a continued basis. It's like somone has flipped a switch. He still has meltdowns, but nowhere near as bad as before.

    It sounds like your son is very sensory sensitive and by what you describe he may need some additional emotional support to help him with managing his anger and anxiety. I would definately consider an assessment by an OT of his sensory needs, as I mentioned in my earlier post. Could you contact your GP for support is he/she helpful?

    My GP was not very helpful, so I looked elsewhere for support.

    In the most stressfull periods of my sons last academic year, we have used Osteopathy from a Practitioner who understands Autism. It helped turn down the volume a bit for him. He found it very powerful and requests it when he recognises he's over stressed. She also talked him through visualisations. Using the staircase senario to help bring his levels of anxiety down, Each step he decended brought him to a calmer place, we still talk him through this if he goes into meltdown.

    I'm pretty sure NAS also offer advice on this site to help with behavioural issues. Try calling their helpline number to see if they can offer further advice.

    I hope the info is helpful. My thoughts are with you

    Kind Regards,

    coogybear

Reply
  • Hi patrice,

      Just to say, what you are describing with different presentations in different settings is quite common. I've read it time and time again on this forum. My theroy is that the child holds onto their behavior and emotion so much at School that the outpooring is like a tsunami of emotion once they move to another environment. My son does the same. At college he's constantly fearful and expected to conform, as soon as he gets home he kicks off. Often rude, often agressive. Since he's left College a calm has desended on the house that I cannot begin to describe. Since most of his life has been spent at School, other than during School holidays, we've seldom experienced such calm on a continued basis. It's like somone has flipped a switch. He still has meltdowns, but nowhere near as bad as before.

    It sounds like your son is very sensory sensitive and by what you describe he may need some additional emotional support to help him with managing his anger and anxiety. I would definately consider an assessment by an OT of his sensory needs, as I mentioned in my earlier post. Could you contact your GP for support is he/she helpful?

    My GP was not very helpful, so I looked elsewhere for support.

    In the most stressfull periods of my sons last academic year, we have used Osteopathy from a Practitioner who understands Autism. It helped turn down the volume a bit for him. He found it very powerful and requests it when he recognises he's over stressed. She also talked him through visualisations. Using the staircase senario to help bring his levels of anxiety down, Each step he decended brought him to a calmer place, we still talk him through this if he goes into meltdown.

    I'm pretty sure NAS also offer advice on this site to help with behavioural issues. Try calling their helpline number to see if they can offer further advice.

    I hope the info is helpful. My thoughts are with you

    Kind Regards,

    coogybear

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