All children have health appointments at times. Parents of disabled children may well have to deal with any combination of specialist teachers, speech and language therapists, occupational therapists, physiotherapists, CAMHS, and consultant paediatricians on top of ordinary health appointments. Then they have to deal more frequently than ordinary parents with the class teacher, TAs, SENCO, and the head. They have to deal with the hierachy at the local authority, such as the LA SEN officer, the area manager, the head of SEN, the specialist teachers, the educational psychologists, social workers and the CEO of the County Council (when making formal complaints).
I can't speak for OP, as she hasn't given all the details; but when my DD was small, I had to:
- liaise with her specialist speech and language teacher (not her class teacher, the local authority's (LA) specialist), the speech and language therapist, the head of speech and language therapy, the occupational therapist, physiotherapist, consultant developmental paediatrician, her LA SEN officer, the SEN area manager, and at times the LA educational psychologist, as well as the class teacher, her TAs (there were two in her class of 10 children) and the head
- attend appointments with the above, which were never arranged at a time convenient to us; we were just told when they were; and CAMHS (4x a week in the first year, 3x a week the year after, and 1x a week for the next 4 years)
- attend the annual reviews, which entailed us writing our views on the past year, her progress and hopes for the next year; and beforehand reading the reports by the class teacher, speech and language therapist, occupational therapist and CAMHS; arranged at a time not convenient for us
- read the SEN Code of Practice to find out what all the above professionals employed by my LA were supposed to be doing; and complying with it
- read the relevant Education Acts and SEN case law, to find out what my LA was supposed to be doing in law
- attend workshops with leading speech and language therapists, occupational therapists and psychologists to understand better DD's needs
- read the books by the leading academics on speech and language disorders, dyslexia, dyspraxia, memory problems; as well as bullying to understand better her very complex needs
- appeal to the SEN Tribunal (a court), as the LA was proposing an education totally inappropriate to her needs, which would lead to behaviour problems
- liaise with my educational solicitor and barrister
- arrange, take her to and pay for independent assessments by speech and language therapists, educational psychologists and occupational therapists to produce the evidence for the SEN Tribunal; and pay for them to give oral evidence at the court hearing (say £1,500 for each professional report and another £1,500 for each professional to attend the hearing). Tribunal hearings can cost the parents £40,000 plus.
- attend workshops by solicitors, barristers and charities on how to appeal to the SEN Tribunal - because the more you can do for yourself, the more money you can save on the solicitor and barrister
- read all the evidence produced by the LA, point out the mistakes and inconsistencies in it, for my solicitor and barrister; and draft documents for the court hearing such as rewrite her statement of SEN myself for the barrister to save money
- after winning the SEN Tribunal, because the LA could not produce ANY evidence that their proposed education could meet her needs, seek judicial review (High Court action) with my education solicitor and barrister, because the LA failed to deliver the provisions as per the Tribunal court order
- attend support groups for parents in my county
- apply for DLA and carer's allowance
By the time, she was in her teens, I was dealing with 40 professionals and public sector agencies like the school, the LA, Social Services, and the DWP - arranging appointments, reading reports, liaising between them, attending multi-disciplinary meetings with any combination of the above, and filling in forms.
The whole SEN system, run by LAs is based on lying, cheating and bullying parents all to save money, about:
- the extent and severity of their child's needs - because their own professionals assess the needs; and they are under pressure from their employer to downplay the severity of the needs; and they cannot recommend anything but mainstream for the child, even though they need specialist provision
- their duties in law and the SEN Code of Practice to SEN children
- whatever lie comes into their heads - such as strong arming a mainstream school into taking a child, when the school says they can't meet the child's needs
- subjecting parents to extreme pressure in meetings to agree with the LA's attempts to save money
- referring parents to Social Services, claiming they have Munchausen's syndrome by proxy, because the parents say their child with autism needs x,y, z special provisions; and threatening to take the child into care
How often do parents of non-disabled parents have to make formal complaints to the board of governors of the school, formal complaints to the LA, appeal to the courts because their child is not getting the education, they are entitled to by law, and formal complaints to the Local Government Ombudsman? How many times have you had to do this @Goodtogossip ?
How often when you get home from work @Goodtogossip , have you had to carry out programmes sent to you by the speech and language therapist, occupational therapist and physiotherapist, with your non-disabled child?
How much time @Goodtogossip , have you had to spend studying a Code of Practice and the law, to find out what education your child should be getting by law; and how much the school and LA are lying to you, about what they should be doing?
How often have you @Goodtogossip had to attend parenting workshops and courses, so you can understand the complexities of your child's SEN. Its like being given a child from Mars to bring up, without a handbook - when you can't understand what they say, what they want, why they are crying, how to teach them anything or what they are trying to say to you; because they are nothing like "normal" children; and it takes a whole different way of thinking, communicating and negotiating with them?
How much has it cost you to get your child @Goodtogossip , the education they are legally entitled to? What if the LA said to you, that all the local comprehensives are full, so they are sending your "normal" child to the local special school, where they won't be able to do the national curriculum, won't have any peers, and can't do GCSEs? What would your reaction be - disbelief most likely, and then outrage? Parents of SEN children face this all the time - hence having to read up on the law, make the complaints, take court actions, etc.