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Need Advice

patrice

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,

      Can i ask a couple of questions? How old is your son and what is the purpose of the assessments. I'm assumimg you are looking for statemented support?

    My LEA were very obstructive when I requested a statutory assessment of my son. Is this what you are trying to work toward?

    The upshot of my predicament, is that owing to the LEA's continued refusal to assess my son, I had to get independant assessments of my childs needs. Parents don't often realize this is an option, but frankly it was the best thing I could have done for them.

    Independant assessments are costly. I had to borrow from my Mortgage to pay for them. However, the thoroughness of them was unbelievable compared to the odd visit by professionals to the School etc and i felt heard as a parent. They listened to my concerns and looked at them during the assessment. 

    Firstly, I wrote everything down in an open statement which I gave to all concerned in assessing my sons needs. The openess and transparency of this is self evident and made sure all concerned understood my concerns as a parent. Secondly, I commissioned an independant reports for my son and gave my statement to each in turn, a week or so prior to the assessment so they understood my concerns.

    The OT assessment was very thorough. Three hours or so of observation, fine and gross motor testing and tests on independance etc. Following that, a report was sent to me to read and all the implications of the results explained to me. From that point on, the LEA's refusal became academic because it was overturned at Tribunal and the LEA were ordered to assess my sons needs.

    I know this option may be expensive and you may have to travel to have your son assessed (Although my son was assessesed in our own home) however, their is no adgenda with independant assessments. They are only interested in the childs presentation, they take their time to truly assess the childs needs so they are not clouded by the cost issues that often concern the LEA's and more importantly they listen to the parental concerns. (not just a snap shot of 15 mins)

    I'm not sure where in the country you live, but it may be worth your consideration.

    Is your son in receipt of DLA? You may be able to fund private assessment this way.

    I do appreciate your frustration and it's clear by what you say you don't feel heard. My son had many of the issues you have mentioned including the toileting problems, so I do understand. Stay strong, I know it's exasperating, but those here on this forum hear your frustration and know how difficult it is.

    Hope my limited advice is of some help.

    Take Care,

    Coogybear XX

Reply

  • Hi patrice,

      Can i ask a couple of questions? How old is your son and what is the purpose of the assessments. I'm assumimg you are looking for statemented support?

    My LEA were very obstructive when I requested a statutory assessment of my son. Is this what you are trying to work toward?

    The upshot of my predicament, is that owing to the LEA's continued refusal to assess my son, I had to get independant assessments of my childs needs. Parents don't often realize this is an option, but frankly it was the best thing I could have done for them.

    Independant assessments are costly. I had to borrow from my Mortgage to pay for them. However, the thoroughness of them was unbelievable compared to the odd visit by professionals to the School etc and i felt heard as a parent. They listened to my concerns and looked at them during the assessment. 

    Firstly, I wrote everything down in an open statement which I gave to all concerned in assessing my sons needs. The openess and transparency of this is self evident and made sure all concerned understood my concerns as a parent. Secondly, I commissioned an independant reports for my son and gave my statement to each in turn, a week or so prior to the assessment so they understood my concerns.

    The OT assessment was very thorough. Three hours or so of observation, fine and gross motor testing and tests on independance etc. Following that, a report was sent to me to read and all the implications of the results explained to me. From that point on, the LEA's refusal became academic because it was overturned at Tribunal and the LEA were ordered to assess my sons needs.

    I know this option may be expensive and you may have to travel to have your son assessed (Although my son was assessesed in our own home) however, their is no adgenda with independant assessments. They are only interested in the childs presentation, they take their time to truly assess the childs needs so they are not clouded by the cost issues that often concern the LEA's and more importantly they listen to the parental concerns. (not just a snap shot of 15 mins)

    I'm not sure where in the country you live, but it may be worth your consideration.

    Is your son in receipt of DLA? You may be able to fund private assessment this way.

    I do appreciate your frustration and it's clear by what you say you don't feel heard. My son had many of the issues you have mentioned including the toileting problems, so I do understand. Stay strong, I know it's exasperating, but those here on this forum hear your frustration and know how difficult it is.

    Hope my limited advice is of some help.

    Take Care,

    Coogybear XX

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