How loud will you scream, how far will you go to get what you need for your child?

[mamadadawahwah]

I am interested in this subject as a mother who never gave up, but finally realised that after so much fighting, screaming and complaining that there was really little out there worth fighting for, in terms of services for my child who has ASD.

we now home school, we fired the NHS speech therapist (totally and utterly useless) and we do it all ourselves now.

But that doesnt mean i wont advocate for other parents who want to access services for their children. Many parents i have met dont have the energy, or confidence to battle the so called "professionals".

I am not sure i would have either, if i had been a very young and inexperienced mum. I am not young anymore and know how the system works.

But i do feel that parents are the only real advocates for their children and i would love to see national focus groups of parents only talking about ways forward for our children who have difficulties.

I have had the most depressing talk with a mum who has a 21 year old child (adult) with autism and there is absolutely nothing out there for him now. No peripatetic services, no day centre, no school, nothing.

its appalling, and she feels very alone.

I feel like the "system" has us where they want us, we are all often very isolated from other parents or "led" by the charities, who I dont believe can possibly have the passion that a parent has.

there is a lot of fragmentation in terms of special needs, between parents, possibly because our children have all such different needs, but at the core, they need the same thing: value, respect, understanding and opportunity.

I dont see that a faceless organisation is going to ever be able to obtain this for my son.

There IS little worth fighting for, but fighting for it makes me feel better.
If I didn't try to get everything I could for my son, then I would feel like a COMPLETE failure.
As it stands, I have won every battle I have had so far. It doesn't matter if what he gets is great or not - at least professionals know they can't walk all over me,and you never know, one day, I might get something that was worth the fight!!

I think part of the problem is that a wide range of communication disorders come under the general heading of autism so there is a lot of confusion in the public mind as to what it is. The needs of high and low functioning ( i hate the term low functioning but not sure what else to put) children can be very different so this again creates confusion and fragmentation. Added to this, there are debates/controversies about the causes and possible 'cures' for autism which if taken too far can divide parents. I'm relatively new to this so I'm not sure about NAS yet but I feel they are trying to tread a difficult path in not alienating anyone regardless of views or where child is on the spectrum.

Lack of access to speech therapy and then finding it is no use is a common complaint though so maybe this is a starting point. I have filled in the John Bercow consultation document for a start !

As a parent who is currently fighting the LEA for full time support for DS and also has had to fight schools and LEA for the past year or so i can honestly say i wont ever stop screaming and pushing for what i believe my son needs. So far my screaming and pushing has got us moved up lists and seen quicker by medical proffessionals it has also enabled us to win one appeal and im still screaming for help. At times i wonder if it is worth it but one look at my DS and i know its all worthwhile. On a bad day i could quite easily curl up under the duvet and not get up but then DS will come into the room fixated on seasons when he should be getting dressed and im back to fighting again. Everyday i face negative comments about DS and strange looks from people who dont know DS. I face call after call to LEA and SENA which normally end in my tears of frustration BUT when my DS decides he needs a cuddle its all worthwhile. One positive word about my DS makes me realise WHY i have to fight. So many times recently i have been told im strong and that my DS is lucky to have a mum who will fight for him BUT surely im doing what ANY mum would do if their child needed help. Im not special and i certainly dont feel strong. The time when i stop fighting will be when i have failed my son. Despite how i may feel sometimes NOTHING is impossible and if evreybody in our situation screamed and shouted loud enough we can change these issues. well thats how i feel at the moment BUT im sure if oyu asked me next week depending on meeting with SENA i may change my view!!!!!!!!!!

I suppose the amount of fighting a parent wants to do, or has to do, is directly related to whether its worth it to fight for a service or whatever.

we have recently taken our boy out of school and the LEA werent too interested. we are now saving them money. If i thought my boy had a chance of learning anything in his school i would have fought to keep him there, but he was just running around like a zombie most of the time and getting stressed out.

He is so much more happier at home with me where i can teach him in a friendly environment and a loving environment.

but if a school comes up that I like, i will fight tooth and nail to get him into it, cause i would like him to be with kids at some point.

I started this thread cause i was thinking of all the fighting i have done, the hours, days, months of fighting and i too, won all my battles, but here we are now, home educating with no support. and to be honest, for us, this is the way i want it, cause the provision round here is dreadful. I have a choice to make, fight with "them" for something i dont even want and lose time with my son, or just work with my boy full time and keep them all on the back burner.

for me its been a hard choice, cause i have been fighting other parents battles too. but when push came to shove, i saw no one was there to help me, no one, nobody, no one was even interested. so i realised, what am i doing this for?

i got a reputation with the LEA and i hope they dont forget me before i have to fight with them again in the future. but if i have to, will go all the way.

Deciding to home ed must have been a big decision for you but home ed is not something i would be bale to do TBH. My DS has problems socially and i dont feel removing him from school would be an option. I also know that if my DS was home with me full time i would lose the plot TBH. I too have a rep with my LEA and this will get worse too as the years go by.

I home edded my asd son as there really was nothnng worthwhile or helpful for him. Home Ed was the best thing i ever did. But for dd, with epilepsy and severe CP, I have screamed and fought constantly. I can't HE her as DH wants to go back to work and I can't lift her myself. So I fought to get her into Claremont which is out-of-county, then fought to get a split placement with the local mainstream school and now am fighting for her to go to Emersons Green school. It has a fantastic resource base for physically and visually impaired kids but only takes 2 kids per year group. FFS. What if 4 blind quad's moved into the area? Only 2 could use this amazing resource. How fair is that?
I'm also a total nuisance with the NHS regarding her equipment, treatment etc and socail services, fighting for the respite care.
But its exhausting
It does frighten me that adult services are useless so at 18 everything finishes. What if dd wants university? Its nearly impossible to get the funding for full time PA's, speech equipment and independant living.

gods, even getting a wheelchair was a 10 month battle. For a quadraplegic child. Used to think people just got these things but noooo....

I now choose my battles carefully. I only put energy into fighting things that I think are worth fighting for (time again- I wouldn't bother fighting for NHS SALT for example- that tome would have been better spent earning money to then pay for whatever we needed therapy wise).

The NAS does seem to have recently alienated a lot of parents of low communicating (a term I think is perhaps more accurate than low functioning - I came across it recently and liked it) children. I think that needs to be addressed tbh or the organisation will never be truly representative - it needs to address the needs of entire spectrum - although that's a tricky balance- more recognition of different needs might be a start.

I'll always fight for whatever I think will benefit J. But it does take its toll. I guess I always weigh up the personal cost versus the benefits of fighting and usually go for the fight. I have no doubt that I will eventually win most of the battles but I sometimes wonder if the fighting is a way of forgetting that I can't actually change how he is, almost a way of trying to compensate for the problems he has by trying to get more for him, if that makes sense .

I never scream, occassionally fight but will often negotiate for what is best for my daughter.

On one occassion I was threatened with legal action if I did not retract a letter I sent to the school, she was being bullied by her teacher, and refused to retract the letter. I did point out however if they wish to take me to court they were welcomed to and when I proved my case the teacher was a bully, that the headteacher deliberately ignored bullying incidents in the school and actively protected bullies I would ensure the press were aware. They never took me to court and after embarrasing the HT at a parents.

More recently my daughters school decided to use the SEN room as a 'sin bin' (my term not theirs) and when I expressed concerns as this was dd 'safe' area they said they wouldn't change it and it was still safe. Missing the point she would avoid it like the plague as it was now associated with 'naughty' children.

I didn't bother fighting the school or LEA over it. I went to our local councillor, explained what had happened and how it effected my daughter and others like her. He went straight to the head of the LEA and child services and it was soon changed.

To the schools credit they have now gone much further, removing the staff from the room and it has been redone and is now a much better safe area, allowing the child to carry on working in peace or just to relax. Disruptive students are now in a different building.

Sorry for second post but didn't want the other one to be too long.

The biggest problem with fighting for change is parents spend a lot of energy and time fighting in an ineffective way. Either we are fighting on an individual basis or support organisations that campaign for national change.

What is overlooked is we can have a lot of influence on the local level. Labour has introduced a lot of changes allowing us to have a direct effect on local services which are often overlooked.

These include, local community councils, housing forums, child services, health services, community police (where they are in operation) and local interest forums, including carers and disability forums.

Unfortunately way too much for one parent, and would need a team of like minded parents to get together idealy, or parents taking interest in different aspects locally at least.

Three parents working together for common goals would be able to achieve a lot by covering the local community council (planning and setting local priorities), child services and health.

I go through phases. I am learning to pick my battles to preserve my energy.

Currently fighting for our right for overnight respite care which we are entitled to but have been refused on unfair grounds. Fighting for that but also for the bollocky criteria that they managed to push such a decsion through on, to be changed, on paper, so that it doesn't happen to anyone else.

I know parents who don't fight. Sometimes, despite being perfectly good parents, they are not articulate enough. Sometimes they are and haven't got the emotional strength due to the pressure of parenting their SN child and/or all the other pressures which we are not immune to either; in fact that could be any of us at certain times I expect. So when I have got the energy/the oomph to do it, then I do.

We shouldn't have to fight for everything. To me it goes to show how far inclusion (of disabled people into the mainstream of society; I'm not merely refering to education here) has to go. We/they are offically not supposed to be invisible anymore in reality, the powers that be impose rules and recommendations that make it clear that they'd prefer if we were. That's why getting on with it quietly gets you nothing. You will struggle in silence forever. You won't find anyone admitting to this but the longer I live as a parent of an SN child, the more I see this proven.

I fight like a dragon for my DS to get what I think he needs, but I try to do it in the sweetest most polite of tones, as I find that disarms people - if your words are tough but your tone is nice. I do, like others, fear what happens after 18 as it all seems to stop. As someone who is also considering possible Home Ed, if mainstream does not work out, it is a shame we can't all club together and set up a social group, perhaps allied to a mainstream social club of some sort, so we can meet their social needs too. I take my DS to a fabulous mainstream gym club, which is very very accepting and which has taught him much of what he knows about how to act around other kids. It also teaches the other kids about autism, and kids who are different. Agree with DGeorgea that we could all be more powerful as a group, but we are all so tired at dealing with what we have on our own plates that there is no energy left. I also replied to the John Bercow survey and I also don't bother to fight for SALT as it was a waste of time for DS, as was the TEACCH system. ABA and mainstream is what I fight for now. Sometimes I think I should be helping other mums to fight; I did help one lady who didn't speak English well so I sat in on her LEA/school review. Maybe we should set up a mumsnet SEN helpline??