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
  • I hear a lot about children with ASD behaving differently within different settings. My son will not go upstairs at home, he throws himself on the floor and kicks and screams and attacks me when I try to carry him up. At school he walks up 21 steps with support from staff! He is scared of the bathroom upstairs in my house, he doesn't like having his hair washed! It can be frustrating when you feel that people don't understand the extent of your childs condition and how it affects them. I am lucky with my son in a way as he gets a lot of support from proffesionals and school staff, I have just had his statement through and was pleased to see all contributors were honest in their reports. This was not the case with my daughter so I really understand your frustration. The headteacher at her school said she appeared 'happy and comfortable' when in fact my daughter was suicidal and self harming. She never went in the playground or the canteen, never spoke to anyone and no children spoke to her! Some proffesionals do lie, I don't know why but in my expierience sometimes the contradictions are genuine (like the stairs) and sometimes people just lie, and it makes things harder for parents trying to get support for their children and its horrible. I sent my daughter to a childminder in the end to get evidence for her diagnosis as the school refused to provide any. She is now diagnosed and statemented and at 12 years old the psychologist assessed her as having a cognitive age of 7, so the school were wrong and dishonest! Hope it helps a little to know you are not alone with this.

Reply
  • I hear a lot about children with ASD behaving differently within different settings. My son will not go upstairs at home, he throws himself on the floor and kicks and screams and attacks me when I try to carry him up. At school he walks up 21 steps with support from staff! He is scared of the bathroom upstairs in my house, he doesn't like having his hair washed! It can be frustrating when you feel that people don't understand the extent of your childs condition and how it affects them. I am lucky with my son in a way as he gets a lot of support from proffesionals and school staff, I have just had his statement through and was pleased to see all contributors were honest in their reports. This was not the case with my daughter so I really understand your frustration. The headteacher at her school said she appeared 'happy and comfortable' when in fact my daughter was suicidal and self harming. She never went in the playground or the canteen, never spoke to anyone and no children spoke to her! Some proffesionals do lie, I don't know why but in my expierience sometimes the contradictions are genuine (like the stairs) and sometimes people just lie, and it makes things harder for parents trying to get support for their children and its horrible. I sent my daughter to a childminder in the end to get evidence for her diagnosis as the school refused to provide any. She is now diagnosed and statemented and at 12 years old the psychologist assessed her as having a cognitive age of 7, so the school were wrong and dishonest! Hope it helps a little to know you are not alone with this.

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