Who has helped you most to get your child's needs

[Tez]

Thinking about lorryw's post"ready to throw in the towel" I know that most of us must have had moments of desparation. There are plenty of tales of how badly we are let know by the Education System, Doctors, Social Services etc. but sadly few of how they have helped us. Of course I know this is because, for many, success stories are few but I thought it would be nice to share some of the more positive actions of professionals and to give some glimmer of hope that it is possible to find professionals who are willing to go that extra step.

 

For me the first obvious person was the Education Welfare Officer. After my son's wrist was broken in school she came to see me. I had been battling with A's schools for years to get him some help with his writing and had established in my own mind that he had Dyspraxia and his problems needed to be viewed in this light. I also was aware that alot of the bullying that transpired was compounded by his complete inability to read body language or to understand where events were leading. I asked for her advice.

 

She spent some time talking to A and asked me if I had ever considered Autism. I said yes but my own Doctor had dismissed it. She told me to go back and say that the Educational Welfare Officer suspected AS and that it was urgent that he was referred because he was now at risk in the school environment because of it. She offered to back her comments in writing. She told me, off the record, that the school had no idea what they were dealing with, and that the only way to get him any help in school was to get a diagnosis.

 

It was a turning point. A was referred. I was told I would have to wait up to 18 months for an appointment but my GP rushed things through and 6 months on from that date I had a diagnosis.

 

I had fought for nearly 10 years with the school and with the Doctors, one two hour meeting with Kerry changed everything.

 

Kerry still phones me to see how A and I are getting on, even though she no longer works for our LEA. Thank you Kerry for taking the time to listen and for helping me get the diagnosis A needed.

 

 

Edited to say : Sorry I just realised I put this in the wrong forum, could a moderator move it for me please?

Edited October 11, 2005 by Tez

[annie]

Great idea Tez <'>

 

The person that helped us the most was a man named George. He was based at my son's old school, but worked for a group that helped teenagers with behaviour problems.

 

George had worked in social services and youth services before and still works at a youth club at night. He was the one person that both me and my son could trust. When Alex couldn't cope at school, he was always there for Alex and helped talk things through with him.

 

When Alex was told he couldn't go on a trip which he had worked really hard to go on. George stood up for Alex against senior management (they were just being spiteful) and he went on the trip.

 

George even confirmed to Alex and myself that the school staff were trying to make life difficult for him. Even though I would never put George's job on the line, he stood up to the staff on Alex's behalf.

 

Through the things that George had said and done, at our last LEA meeting even our SEN officer admitted that she had discovered that certain staff members had acted underhandedly.

 

I know that this kind of sounds all negative, but it isn't. George helped Alex and me to keep fighting and without him, when Alex was at his lowest point last year I could quite easily have lost Alex, but I didn't, thanks to Alex's brilliant mentor - George.

 

Annie

XX

[linss]

My sons school has an Inclusion Practitioner, who's there two days a week to mediate between children, parents and teachers.She's been a great support and really fights for the kids rights.Apparently in the future more and more schools will have them as we move towards inclusion (lovely word!!!)

 

Apart from that i have a friend who just so seems to understand my son her and her husband have never looked down their nose at him or been put off by his behavior. Instead they see what we see, a boy with a lovely bright inquiring mind they support him 100% and mostly think he's in the right (which isn't always the case!) but it's nice to have someone who loves him unconditionally.

 

We've also got new neighbours who are wonderful and enormously tolerant when my son wanders into there house and turns on the telly!!!!

I gave up feeling embarrased years ago !

[Zemanski]

R

 

the best head and senco

 

even at the tribunal where she was asked to stand against us by the LEA she fought tooth and nail for Com, even when she didn't understand his needs she always tried her best for him.

 

D

 

wonderful LSA who really worked at understanding and communication in the face of adversity otherwise known as a cr*p senco and a bullying teacher or two. I was really worried for him when he stood up to senior management for Com.

 

S

 

our advisor who turned Com's school right around and helped negotiate stuff for him I'd never even thought of.

 

and finally P

 

our wonderful woman from Parent Partnership who saw us through 2 tribunals and the ombudsman. We couldn't have done it without her

 

I could name more, Com has had some very good people supporting him, just a shame there are still too many with too much influence digging their heels in

 

Zemanski

[lisann]

Has to be my Hubby without him and his constant reminder that

 

" People have life a whole lot worse think ourselves lucky we have him ASD and all!!!"

 

Love him loads and without him I would have gone crazy

 

 

Lisa x

[nellie]

No one helped me through the school years. When my son left school at 19, I got fantastic support from a SS care manager and a volunteer from my local autistic society. I will always be grateful to both of them.

 

The SS care manager was the first to mention that my son may be autistic. He was assessed by a psychologist when he was 10, who stated my son was definitely not autistic. He eventually got the diagnosis at 19!

 

Nellie xx

[DaisyProudfoot]

Son's form teacher and SEN (one in the same person) - that woman is a godsend. She told us to forget about going through the education system and go to our GP instead - natural progression followed and he was dx within a few months.

 

Daisy

[madme]

1) paediatrician who saw my son on a ward after admission for a serious asthma attack. He was there 3 days and went from v quiet v ill to hyper monkey bouncing off the walls! He sat on the bed and said is there anything you want to tell me. I blurted out the story and failure of school. He fast tracked us through to see someone within 6 months when the waiting list was 18 months.

 

2) Head of current school. A lovely man who has dedicated his life to helping children like mine. Hes a bit of a mad boffin but his heart is in the right place - his son died and he knows how hard it is to lose a child who needed help. The world could do with more like him.

 

3) His teacher last year who helped to give him back some of his self esteem which had been knocked out by his previous school

 

4) Lisa Blakemore Brown. Im so sad to hear of her recent problems

 

5) The local hopsitals and SALT service who have really helped and supported us in our fight.

[LizK]

1) Paediatrician who was the first person not to dismiss me as being an overanxious neurotic mother and said that DS did have some developmental problem. He's open minded about a diagnosis, not in a hurry to slap a label on DS which suits me but equally is realistic about DSs problems

 

2) Nursery who have bent over backwards to help DS in many way like sending his keyworker on a SENCO course, doing individual work with him on his current goals but also integrating activities tailored for DS into the whole group to stop DS being isolated

 

3) Speech therapist. Once we actually managed to persuade her to do some therapy rather than just pointless assessments she's been very good and has had a lot of useful insoghts into DSs behaviour which has helped me understand him better too

 

The person who has been least helpful by far is my old health visitor who a) implied that DS wasn't speaking properly because I talked at him rather than too him that maybe DS wasn't dvloping because of my PND (which never had ) had prevented me from interacting with him properly and c) made it very obvious she thought I was overreacting.

 

Sorry for going off at a tangent but the memory of that time is still very raw with me

 

Liz x

[call me jaded]

The midwife who came back a day after she had signed herself off to say yes she would refer us to the paediatrician. I always say that my son was 10 days old when he was referred, but I realise he must have been 11. He saw the paed the next day.

[Suze]

Gosh this has got me thinking...............the people who helped and supported and those that shook their heads and walked away................the O.T. who first said ASPERGERS, thankyou .The classroom assistant whose shoulder I cried on (and still do) .The physch who confirmed it ,.....................the teacher who cared not to understand , the parents who judge ,and the friends and family who never enquire, never ask, and who comment "you mean we the tax payers pay for his helper???.....I wish my kids had that luxury!!"

[witsend]

In case the SENCO who kept 'mentioning' aspergers even though I was not ready to listen and who subsequently fought for the statement with me, and even more so the guy from parent partnership who explained AS to me in such a way that I began to realise it fully and therefore accept it and who actually acknowleged that it was a 'big deal' and gave me space to rant on and then has since attended all school meetings with me and has basically been fabulous! Shame he's already married eh?

[Lynden]

I think intially here our health visitor! We moved here when Logan was 12 months old and had been advised to seek advice for Logan from our old practice. The first GP I saw basically told me my concerns were daft and it was just 'him being him'. Our health visitor was fab though and got him referred to the consultant head of the developmental team and they've really all been good since. I guess our real battles wont start till he begins in education though.

 

 

Lynne x

[smiley]

With us it was the pead....she was a ray of light, competely understood what i was telling her, and has talked to me well over the alocated time for consultation.

 

The same with the speech therapist.....over and above talking about speech problems......M's initial assesment went on for an hour and a half.......i was still talking to he another hour later, her advice and input has been tremendous..

 

M's previous headmistress (the new one began this term)......she loved all of the children in her school, which was obvious by the reaction the children gave her. She worked endlessly for the SEN children - often in her own time, unpaid.

 

Everyone of these people has recieved a letter from me thanking them for their help.......and they have loved to know they've made a difference.

 

Wonderful people.

[Flora]

One day when I was whinging on (wallowing in self pity might sound a bit harsh but it was probably bordering on that!).... a friend of mine said... 'well it's not terminal is it..'

 

Too right it's not and that's the best thing they could have said to me. It pulled me up short and made me realise how lucky we actually are (respectively that is )

 

Lauren

[elaine1]

the child psychologist - up until then no-one believed me i dont think.

[baileyj]

What a lovely subject, hmm....

 

Kate from Pre-school learning alliance, the first person who helped us, and helped us find a playgroup that would be good for Max. Came on all the visits with us, supported all of us, and is now a dear friend.

 

Kelly his first ever 1:1 at playgroup, just a Mom like me who wanted to give it a try, helped Max learn it could be OK and he could have a good time away from us and our house. Kelly and Rosemaries patience their was fabulous. Changed our lives.

 

Julie his 1:1 at nursery, and now in Reception, she is the most fantastic brilliant lovely lady ever, she had helped Max so much, he has complete trust in her and loves her. She has done more for him than any one ever.

 

Mrs McG Max's nursery teacher, who helped us through all the statementing, supported us, even 1:1 for Max when Julie away and got a supply teacher in for the rest of the class. She set us on the road.

 

Janet, Portage worker, sadly not with us anymore what a brilliant help and support

 

and finally....my Kevin, my wonderful husband, who takes care of us all.

 

Jo

[Hectorshouse]

Thanks for this Tez, its an interesting question ...

 

The Dr the dx'd T the fact that after dx nothing

The school in cornwall that finally agreed that statementing needed to be done URGENTLY, and the teacher who worked with T during his yr 6, fab bloke, who's son also was AS and knew exactly where I was coming from

The SENCO at T's secondary school in Falmouth, who did NOTHING!!! and caused us nothing but extreme trouble, I'm sure the problems T experienced there contributed towards my breakdown last year, and for THAT I do hold her responsible

My absolutely wonderful PPS lady in cornwall without whom I would never of been able to face another and another meeting

The PPS here, not good, and from discussions with other parents and with him, very clearly in the LEA's back pocket, hardly independent and very patronising!

The EP and AAT in cornwall, both of whom tried very hard, but were unable to deliver.

SS's always sound good but never really deliver

My mother, who has lately surprised me hugely, she is now very well read on AS (thank you mr attwood for your wonderful book) and has been a life saver since moving back to Devon. Her understanding and empathy, also her real phsyical support in the absence of any respite has been wonderful, even though she is a carer for her husband who is very ill and that she suffers with glaucoma and extreme anxiety .. good on you mum, this time you actually came through

My son A, without whom I could not work, he often is a carer for T, although he has his own problems and often gets left out cos of T's problems, he is always there for his brov <'>

My long suffering partner, who has difficulty with coping with us all in our madhouse, but has stuck by me through thick and thin, and although not the boys paternal father, he is Dad

The LEA in cornwall and Devon, and they know why, inclusion b**sh*t!!!! when will they learn that square pegs do not fit in round holes, and the more you force them the worse it gets!

 

And finally and most importantly EVERYONE ON HERE!!!!!! without this forum I don't know what I would've done or how I would cope, thank you!

 

HHxx

[Minxygal]

Professionally I would have to say ouir pead who has supported decisions I have made even though I've been unsure if I was doing the right thing. Take James's SAT's for example. She was the only one who stood up and said "Good for you" when I said that I had decided this was unneccesary pressure for James. I appreciated the fact that she was on my side.

 

Overall though the biggest help has been the other parents who have shared their expriences with me and by doing so have empowered me to keep fighting when I felt I couldn't go on. I will always be grateful for them

[phasmid]

In our case the plaudits have to be given to the locum GP I first raised our concerns with. We had a very frank conversation and he bowed to my greater (though at that stage rather limited) knowledge about the subject - I, or rather we, had no idea of the steep learning curve we had just found ourselves facing. Then the specialaist paeditrician who carried out the whole diagnostic procedure. We knew what was going to happen every step of the way - she explained it to us in plain terms. It was ###### hard. We had complete faith in her throughout.

 

The brickbats? Well, they go to the person who, we since discovered, diagnosed Phas Jr as Autistic at three but decided not to tell us as "Labels are not very helpful"!?!?!?!?!?! When we look back we got so much right by pure instinct and common sense but, we also got things wrong - badly at times. On one occassion very, very badly wrong. I/we can never forgive this person for that. Had we been told then something that happened would have come out a lot quicker than it did. This one incident spurred us on to 'get involved' and try, in our own way to stop this happening to others.

 

My son paid us a lovely compliment last night. I was sat here typing a response to a thread - chatting about it to Mrs P as I did so. He suddenly butted in as we were talking. What he said nearly made me cry (and I didn't tell him, and he won't read this)..."You really use what you have found out through me to help people don't you? I mean both of you. I'm really proud that you see my AS as something good and aren't afraid to talk about it. I suppose that's why I'm not afraid to either."...and he went back to what he was doing! Yeah son, we are proud of you - your brothers too - all of you. You drive us to distraction on a daily basis, round the twist weekly and to hell and back on regular occasions! But, you helped us realise how important childhood is and how important it is to get a good education.

 

Life is what you make it, we have faced many knocks over the years. But we're never, ever afraid to learn lessons from them and to use those to help others. I'm rambling now but I suppose that what I'm getting at is we may not have chosen the route we used to get 'here' but 'here' ain't so bad.

[Kathryn]

I can name our wonderful GP who has believed us and trusted our judgement from the beginning, makes referrals and writes letters when we ask her to. She is also honest enough to say "I don't know the answer" rather than try to bluff her way through something.

 

The greatest support though, has been from a person who has no professional qualifications or experience in the world of ASD. She is a good friend who stepped in to become my daughter's carer when she was at her most challenging and least predictable. At first L completely ignored her and was hostile, but my friend hung in there and they now have a very close relationship. L has really blossomed with her and she has taken a lot of pressure off me by sharing this load. My daughter no longer needs the level of physical care she did, so they now go out and do fun things together. I know L does a lot more with her than she would ever do with me!

 

I can't think of a way to say this which doesn't sound cheesy, but she has constantly given L consistent love and acceptance. She was secure in herself not to take any hostility personally, and she has come in willing to learn from L, not with her own preconceptions or agenda. Whilst taking account of my daughter's difficulties she has treated her firstly as an interesting and unique person.

 

I can't think of any professional who would have given the same level of support. My friend would have done it for free too, but I persuaded her to let me pay her. I would love her to work with other people with ASD as she has so many natural gifts and she has now acquired the experience.

[Malika]

Thanks TEZ to think positif,

 

I can name H teacher in year 2 who after getting so fustrated with him listen to what I had to say and help him through the last 2 terms holding his hand (psychologically and physically) and who pushed the senco to get him on school action and to give me a letter for my GP asking for a referal to the neurodevelopmental team and this year (year 4) H teacher who is showing so much patience specialy as he keep losing things she never lecture him but try to make him remember where he has been and even go looking for what he's lost around the school well after the bell. <'>

Not to forget our sportman (6 foot 6) who is giving so much support to H for swimming, social-activity group, and above all on the play-ground and stop the bullies who had been annoying H for more than a year. and when I ask if H was listening to him and he said "yes no problems" H then told him "it is because you are loud" He then laugh so loudly that people at the other end of the school were wondering what he was laughing about....

 

Malika.