Fighting for your child -

[Tez]

Yesterday I had a meeting with an "expert" who offered to go through A's proposed statement and give me some pointers. My husband came in half way through the meeting and observed what was going on.

 

This morning he said to me how angry he felt when this "expert" asked me a question and then cut across my answer by picking up his mobile and looking at it and said, "Praise the lord, it hasn't rung." My husband said that he felt that the "expert" didn't have time to listen to what I had to say he was only interested in buying himself time to think up his next profound comment.

 

I had also noticed this action, but what struck me was how much I'd changed. 6 months ago this would have destroyed me, I'd have worried about how boring I was that someone felt the need to shut me up in this manner and that worry would have stayed with me for days causing me to go back into my shell and keep my mouth shut.

 

Yesterday, was different, I merely thought, "How rude and you think you can teach my son social skills."

 

6 months have made a big difference to me, I have grown in confidence and can hold my own with these "experts". I have my son to thank for that.

 

I know that there are alot of negative things about fighting for our children's needs but does anyone else feel that they have also gained from it?

Edited December 1, 2005 by Tez

[Minxygal]

Fighting for my childen and learning what's needed to support them has taught me as much about myself as it has about the system and the children. I have learned not only my strengths, but also my limitations.

 

It's quite a journey isn't it?!

[tsmom]

im still learning lol .I got a letter from the SEN tribunal today telling me the EP would not be attending.I was so pleased i dont think i could stop myself from hitting that women if she was in a room with me,and im not really violent honest

[Kathryn]

Oh definitely. I had a tendency to be either a pushover or overly aggressive in my dealings with people before. I'd be embarrassed to make a fuss and complain until the anger built up and I would then explode.

 

The way I handled the whole transport issue a couple of weeks ago showed me that I have become more assertive and self controlled - I have a better idea about when and how to apply the pressure and how to get people to cooperate with you - this sometimes involves getting angry but isn't always the most effective way.

 

It has spilled over into other areas of life - the other day I got cross with having to wait in the queue at Morrisons for so long, so I went to customer services and suggested it would be a good idea to have more checkout assistants at peak hours. I phoned the head of my son's school to express my concern about a relatively minor problem - I'd never have done this two years ago. As Mossgrove has said on another thread: one becomes a fully paid up member of the "awkward squad"

[Hectorshouse]

Fighting for my childen and learning what's needed to support them has taught me as much about myself as it has about the system and the children. I have learned not only my strengths, but also my limitations.

 

It's quite a journey isn't it?!

Minxygal, I couldn't have put it better.

 

HHxx

[jenny1969]

hi i just wanted to add i am very happy at how strong i can be for my children and all i have got for them no doubt i will have bigger fights in the future and i will be no push over but i also end up in bits when my daughter does or says something all of a sudden it hits me hard how much she struggles and it kills me to see this and i just crumble then after a while i pick myself up and carry on

jenny

[oracle]

The terrible experience we had with David changed me as a person forever. This will probably be very hard to believe but up until then I would walk away from any confrontation and hated making a scene. I still hate making a scene publicly (again hard to believe I know) but I will now stand my ground and will not be talked down to or at by so called experts.

 

I realised to be effective where change was concerned that there were certain rules and scripted performances that I would have to adhere to, when dealing with the professionals, and so I have done that. At the very begining of all of this a friend with AS said to me that 'You have to be in it to win in!' OK so that's also the Lottery Solan but it holds true about most things, and that is why not matter how much certain bodies of people make me feel of like I count to 10,000 if I have to or walk away.

 

I believe that living with ASD is a life changing experience for everyone but I also believe that when parents feel empowered and confident in themselves it certainly aids their fight.

 

Carole

[rainbow queen]

i agree-becoming a single parent made me strong and then coping with my sons disabilitys has made me even stronger.

rewind 5 years back and i would never object to what people in authority would say to me-but now it is not the case-i dont give in-i push and miver till i get my point across.

it has spread into all areas of my life-and i feel its made be better person

i see my sons problems as a learning experiance for me-which contains vital life lessons to learn from

[Guest hallyscomet]

I think it has made me a better person, more patient, I had to pull out of the Corporate world when my daughter was raced to hospital suffering a severe epileptic seizure the doctor found a moon shaped image in her brain on the MRI. On discovering this they said I would have to quit my job and monitor for the next few years as they were unsure of what would eventuate. After having a son with ASD and now a daughter with Epilepsy I remember sitting in the hospital one night I had to sleep in a fold up bed at her side for two weeks while all the tests were being done. On admittance had a fight with the Nurse in the ward at 3am in the morning the first night as she insisted that I send my then 11 year old ASD child home alone, it was impossible to contact anyone at 3am in the morning, all my family lived so far away, I couldnt possibly leave my daughter, after an hour of saying NO and standing up to her as my two children were traumatised by it, the trip in the ambulance for them both and my daughter had no feeling down her left side especially her left arm. I said to the nurse the night my daughter was taken and admitted My sons doctor is the Paediatrician of this hospital he will okay it in the morning when he comes which he did. Took an hour of persistance though. He came in and saw my son in one bed and my daughter in another and my sitting by the window had less than an hour sleep all night. He actually had tears in his eyes after reading my daughters reports and said why you, he knew I had already been through enough, my ex left when my son was diagnosed with Autism and my family virtually deserted us as well. I said straight to my doctor "I'LL HANDLE IT" I had no choice in the matter. My son ended up staying in the hospital for 3 or 4 days before we could trace my ex to come and take my son while I stayed with my daughter.

I remember waking up one morning about 4.30am I couldn't sleep, you know what hospitals are like, and I was feeling totally shell shocked by seeing my sons doctor of 9 years with a tear in his eye. It was unbelievable, that this was happening to us. I remember saying "WHY ME" when my son was diagnosed with Autism and my husband left to a counsellor and she replied "Because YOU WILL Handle it" she was right, and that thought stayed in my mind this morning at the Hospital when I coulnd't sleep I said no matter what happens I will handle it. Just looking at my beautiful girl plugged up to machines and having to put up with a needle in her hand for two weeks incase she had another seizure made me realise I had to be really strong for her.

 

Well as I kept meaning to say when I woke up at 4.30am thinking these thoughts, I looked out the window I was on the 6th Floor in the childrens ward of the hospital on the top of a hill over looking a golfcourse to the left and nothing but the sun gold coming up glowing in the distance shining enough to glow over the waves over a metre high each up to the beach I suddenly felt the most amazing peace I really felt Gods presence and I knew I would be alright.

 

From that day on my son and daughter and I became so close, and the best family ever as they were my No. 1 Priority, I remember telling my boss I was told by the doctor I had to leave my job, that event changed me for life. I guess I grew a backbone. I was a Project Accountant so I felt a little sorry for my BOSS trying to find a replacement. They were wonderful.

I remember reading the cover of a book recently it was called "DONT SWEAT THE SMALL STUFF - AND ITS ALL SMALL STUFF" You know it is true, I used to worry myself sick almost into a panic attack about the kids and money, now I break everything down into little things, write things down, and put them off for a week, if I have an argument with someone instead of arguing, I put it off for a week, and allow myself to cool down, then if after a week the TO DO LIST is reviewed again and I ask myself REALLY - HOW IMPORTANT IS IT!!! I am much more relaxed about my decisions now.

 

Gee I am good at waffling on though arn't I.

 

The answer to your question YES I am a much better person now, than I was before my children went through these obstacles in life. They know they are loved too. But I have a huge hatred of my sister and brother I will never forgive as they din't take one step near through all of this. They are sub human self absorbs little nothings. actually I am getting better I actually spoke about them without swearing. See I am becoming a better person all the time

 

Regards

Hailey

[smiley]

Hailey That brought tears to my eyes!

 

I had a similar experience when my son was 9 months old and rushed up to St Georges in London for an emergency op.

 

The anesthatist (sp?) had given him 10 times the amount of morphine pre-op, - he ended up in ICU for a week, i nearly lost my little one

 

I can remember very, very clearly looking out of the window one night. A heck of alot had happened to me even before that point and i was very low. I'd forgotten it was bonfire night and just as i was looking out of the window in tears the fireworks started. I was so high up i could so them for miles. Something definately 'clicked' that night and i became determind we would see the fireworks next year and the one after... - we would get through this... I always have a little blub on bonfire night!

 

Have i become stronger? I think becoming is a better word, things still get to me, (as Jenny said, i have moment when i look at my son and it hits - 'Wallop, your sons autistic'). But i'm getting there.

[ceecee]

Your stories show how amazing you all are as parents.I only had to fight for my daughter for six months but my husband says that I faught tooth and nail and to this day he always says to me.I am so proud of you for that.You did for her what I never could have done.You never gave upon her.You re-taught her so many things.You never let her see you cry.You held your head high and carried on taking her to playschool every day.

 

But I tried to explain to him anyone would have done the same.But he wont have it.I think these stories here just prove my point.

 

It makes you a stronger person determined not to be fobbed off.We as parents know our children best and there will be no one more determined than us.The parents on this forum have my upmost admiration and support for the daily struggle they ineviatably have.I was there once and it makes you a different but so much stronger person. <'> <'> <'> <'> To you all.

[phasmid]

There was an incident involving phas jr many many years ago now. We debated moving him to another school and all sorts. We didn't. But that incident changed our lives completely. We decided if the system could let him down the way it had then we ought to fight it - from the inside if thats what it took. He had no dx at this stage (not one that we knew of , at least). So his ASD wasn't exactly the cause of this, merely a symptom.

 

But that is where the drive to become involved in education came from. Which is why we now do what we do. What we have learnt, like most of you, has been learnt the hard way on occasion. But those lessons have helped us to be able to help others. We strongly believe in learning from our experiences and putting them to good use. Which is why I find myself still here having found the site during my research. On here I am able to share what I have learnt with others - why should we be the only ones to benefit?

[call me jaded]

I don't think autism has made me a stronger person, I think age has.

 

I've just fine-tuned skills I had from my career and applied them more rigorously to a bigger challenge.

[madmooch]

My son was dx a week before my daughter was born, I went into prem labour ( 5 weeks) and the staff left me too long in labour knowing i wasn't doing too good and my daughter was in distress, they eventually took me down for a c-section but she had died 20mins before they got her out they managed to resussitate her, but she was very poorly.

two days later she was rushed to another hospital for an op on her bowel, giving her an Illiostomy, she had developed Necrotisingenterocolitis

At ten months old she had the Illiostomy reversed and part of her bowel took out.

She is now 2 and a little villain doing great but has to go for a MRI scan to see if there's any damage through the lack of oxygen.

I have been on antidepressents since she was born but i would say i'm alot stronger for what i've been through, trying to come to terms with my sons dx and my daughters birth has been hard but i'm past that now, still angry at the hospital though

I look at it like these experiences have made me stronger and i dont care what people think of me anymore, my kids come above anything else

And i question hospitals now

 

Madmooch

[woodri]

Our DS son is now 27 and we have fought 'experts' for that long apart from a fantastic specialist health visitor when he was a baby. They abolished that post of course so we had to help out other younger parents later on. And then we met our first Educational Psychologist.........

 

It pays to be stroppy and challenging but important to be informed of options and if possible supported by other parents in similar boat. We are still fighting 27 years on with the local authority (lack) of provision, schemes that suit them and the benefits agency who can't programme a computer to work accurately. Every year we still have to fill in a form in case he has been miraculously 'cured' and no longer needs help.

 

Key help has come from a local charity in our case Mencap and local voluntary social groups (including one for AS) and a network of like-minded warriors.

 

He has two younger sisters who have also learned resilience, questioning and a kind of scepticism which has bonded us all together very strongly and which they are transferring into their own lives. Not much fools them.

 

It's a long game but with plenty of rewards close to home.

[bid]

Good thread!

 

Mmmmm...I don't think it has 'helped' me as a person to see my son suffering in the way he has done.

 

But the process of fighting for him has forced me to become a stronger, more confident person in some ways.

 

On balance though, I'd gladly give up that strength and confidence if he could get the support he needs without the continual fight.

 

Bid

[Helen]

Fighting for my son has made me a more determined and a more confident person. It has also turned me into a nasty and vindictive person and I don't like myself at times - I've tried numerous times to use diplomacy but this just doesn't work on some professionals that I am forced to deal with, only brutal honesty seems to get through to them... and this makes me very sad.

[Minxygal]

It has also turned me into a nasty and vindictive person and I don't like myself at times

 

 

 

Aw Helen, to me you come across as someone who loves their child dearly and is prepared to fight tooth and nail for their needs. I think you come across as very friendly and lovely. Not at all vindictive or nasty <'> <'>

[MelowMeldrew]

I got tired, stressed and near totally exhausted after 6 years of fighting the system. I won through at the end of it, and wanted to sleep for 6 months. So much effort and so much time spent, time lost, and perhaps will not be made up, it's made me a forceful person, where I was once easy-going, someone who planned his entire life around his partner and son to the almost total exclusion of anyone else, because there was no alternative, someone the system views as a pest and a nuisance, I near lost any friends I had because I couldn't spare any time for them, my son needed me, it was a simple matter of priority.. I wanted to be a father, not an in-house social-worker or carer, it was very hard making that distinction, I think I managed it, I hope so, only time can tell...

[Flora]

I used to respect teachers, listen to them, and was even reassured when they assured me that 'there's nothing wrong with him'... even AFTER dx.

 

I now will not allow them to get away with telling me that my boys have no problems. I always now answer such inanities with a set reply... 'just because you want to believe that, it doesn't make it true, and I wonder what your opinion would be if your budget was a bottomless pit'...

 

I am getting better and better at standing my ground and trusting my own opinion and believing my own eyes and ears.

 

I really believe there is a conspiracy to put the blame on the parents and intimidate us in to believing that it's all our fault and if we don't want trouble we should keep our mouths shut. This is especially true where HFA and AS are concerned.

 

I'm as hard as nails now, it still makes me quake inside but I don't let them shift me.

 

Lauren

[jools]

i'm still learning.

i can't stand confrontation and usually back down.

however i'm getting better at standing my ground

 

a big problem i have is that when i get angry i often cry........i hate that!

[smallworld]

Me too Jools

perhaps sometimes it has it uses ?

 

wac

[Guest hallyscomet]

I think your all wonderful parents your posts have brought to my eyes. As I often say "God must think you are very special, having entrusted you with one of his special angel" your children are very lucky to have wonderful parents like you <'> <'> <'> <'> <'>

 

Regards

Hailey

[LKS]

I agree with Helen on this. I don't altogether like the person I've become as I think I'm very cynical now The E.P. once described me as having a negative personality I have a real problem with being disliked, and I am now by so many involved in my children's education.All I wanted, same as all of you, was what is best for them, unfortunately this is not always what is best for the school(or so we are led to believe) So I don't know whether I am stronger but I am changed

[Kathryn]

a big problem i have is that when i get angry i often cry........i hate that!

jools and waccoe - I envy you for being able to cry and I agree it has its uses. I'm completely the opposite - the tears just won't come when I'm in public. I often come across as competent and controlled when I'm feeling anything but. This gives people the false impression that I'm coping when I'm not and then I fall apart in private at home - a fat lot of use!

[nellie]

Has fighting for my child changed me????

 

No, I don't think so!

 

Nellie

[sue1957]

Having been let down by the system over 20 years ago, I didn't give it much chance second time round. As soon as I realised the HV didn't have anything to offer, and the GP just nagged about vaccination, the pre-school just said "he's not the worst in the class" I gave up with all of them. From past experience, the problem with schools is that even if we did manage to get a good teacher, good help etc, everything changes, and before we knew it we were starting to fight over again. Been there, done that, got exhausted and disillusioned first time round.

 

We've opted to avoid the conventional diagnosis/educational intervention route completely, and we have been lucky to find out about the fluoride sensitivity that was causing such major problems. I've spent the time instead on training in nutrition and stress management, done seminars at BIBIC, done research and studied complementary therapies. I gave up a well-paid job that was stressing me out anyway, and I?ve no regrets. The rewards are worth it.

 

Trying to get something different done for any of my children at school usually ends up a waste of time, but if it?s a good idea for all children in the class, then there's more chance of success. So I'm a school governor at the infants (where my youngest was until July), and my husband is on the PFA of the Juniors, (and I've just offered to join the nutrition police ). If you can't beat 'em, join 'em!

 

Working for improvements from within is definitely less stressful, but we have complained when necessary. It helps to know the system.

 

Maybe it?s being that much older, maybe it?s not relying on the professionals, or maybe I?m just choosing my battles more carefully. And for some of the time at least I've got more confidence to stand up for myself now, but sometimes too I?m collapsing in fear and self-doubt, and trying not to show it.

 

Has it changed me? Definitely.

[Kerre]

Uh... I've become a paranoid android...

[ray]

dunno, interesting question - easiest thing to say is that this isn't the life I envisaged when I looked into the little chaps eyes for the first time when he was born. So I guess the gradual realisation of how different things would be, and how they turned out, probably has changed me, but only in as much as a different life would have affected me in a different way. That made sense when I was thinking it. What I would say is that having walked alongside Alex every step of the first 17 years, its made me realise how unimportant, in the scheme of things, most of life's other issues are, and, compared to some of the things we've faced together, how easy everything else really is.

[smiley]

What I would say is that having walked alongside Alex every step of the first 17 years, its made me realise how unimportant, in the scheme of things, most of life's other issues are, and, compared to some of the things we've faced together, how easy everything else really is.

I'll second that!!

[Suze]

One of the things fighting my childs corner has done for me, is , made me see things from a different perspective and I,m not as critical of others,less likely to jump to the wrong conclusion. When people meet my son they immeadiately form a opinion of him, due to his behaviour and mannerisms.This might be...he,s rude, a wierdo, etc.I,m very conscious of this and I,ve found when I meet people and kids and their behaviour is deemed strange I don,t immeadiately think badly of them.A friend has a son with adhd, this boy has made a name for himself .I know him as a really great kid, he,s full on , but I,ve witnessed other kids taunt and encourage him to behave badly, he,s an easy target.I challenged one of these kids they were well aware of what they were doing. This was at a party, during the pass the parcel this little chap was a bit over exuberant, the "clown" entertainer made him sit out................ ........well I told him ......................This lad needs a chance, he is continually expected to behave badly, he,s such a sweet boy.............learning about my sons dx has made me realise people need a chance and not to be expected to fail because of a label or dx. Our kids are more than that.

[Guest hallyscomet]

QUOTE (ray @ Dec 2 2005, 01:25 PM)

What I would say is that having walked alongside Alex every step of the first 17 years, its made me realise how unimportant, in the scheme of things, most of life's other issues are, and, compared to some of the things we've faced together, how easy everything else really is.

 

 

I'll second that!!

I'll third that

 

Hailey

 

<'> <'>

[Corcaigh]

I really believe there is a conspiracy to put the blame on the parents and intimidate us in to believing that it's all our fault and if we don't want trouble we should keep our mouths shut.

Well said, Lauren. We've been fighting for years in behalf of our son, who was developing a serious anxiety disorder thanks to the ignorance and ineptitude of of these so-called-professionals working in school. We -parents- have been blamed for nearly everything, school never admitted its faults and made things worse and worse. As a result our family life got trashed and strained and we made Ila-Lilly rich for our Prozac consumption...

 

On the other hand, I believe this made me quite stronger. I am getting a degree in Psychology because I was fed-up with getting trashed by teachers and arrogant headmasters: now I get my respect at meetings. I also met loads of wonderful and supporting people on my path: the psychologists and therapist working with my son and our family at the moment are just amazing. The Department of education backed us up fully (fair duce) and they were very sympathetic when we pulled our child out of his current school and helped to find a valid alternative.

 

There are people out there willing to help. I am very angry and depressed at times, then I look outside and I see friends and sensible helpers. And I know we can make it.

 

Sorry for the rant, but we are going through a bad patch, like many of you had, and we got invaluable help from some good people and friends. We couldn't have made it without them <'>

 

Martina

[Guest hallyscomet]

Hi

 

I am getting a degree in Psychology because I was fed-up with getting trashed by teachers and arrogant headmasters: now I get my respect at meetings. I also met loads of wonderful and supporting people on my path: the psychologists and therapist working with my son and our family at the moment are just amazing. The Department of education backed us up fully (fair duce) and they were very sympathetic when we pulled our child out of his current school and helped to find a valid alternative.

 

Well said Martina, a lot of parents need to think like this. Having an ASD child gives us a masters degree in Psychology, God bless us all <'> <'>

 

Regards

Hailey