"A Real Boy"

[hereidrawtheline]

I just finished reading this book tonight. I have a lot of thoughts on it, apologies if it has been discussed many times before here, but for me it is new. I need to get out some of my thoughts on it I guess.

First and foremost, the child in the book, David, is severely autistic, and to be honest, I felt a fraud reading it, calling my DS by the same name. The family in the book clearly have a much harder go of things than me and my family. Nevertheless we do still have a hard time and DS is still autistic. I understand about the spectrum. I just felt... I dont know. Less deserving of care, even though I feel we need care. And I felt confused as DS is so repetitive, has so many rituals, has so many sensory problems, etc so yes he is autistic. But there was such a gulf between David and my DS. It is just strange to be involved with a DX that has so many faces.

Secondly there was one thing I strongly identified with in the book. David had an obsession with his Mother. He had rules regarding her behaviour and what she can do. He loves her obsessively. She belongs to him. And she felt the strain at times of being his necessary. It is like that with me and DS. He and I are all wound up in each other, we often truly seem and feel as one being. He is obsessed with me. He feels he owns me. He needs me. And I wouldnt give an ounce of that away for anything, I love him right back more than I ever thought possible. But still at times I am stressed over the pressure. When I was recently taken to A&E by ambulance due to my pneumonia I sat there with an oxygen mask on and wept silently the whole time. Not at all for myself but because I was afraid DS would wake in the night (he was asleep when I left by ambulance) and go into meltdown because I wasnt there to soothe him. And I was just in such sorrow thinking of it. I just wanted to be given loads of drugs so I could be sent home again.

The other thing I was struck by was the fear of doctors and social services. I am already in that loop. HV. Doctors etc are making me feel very insecure about my parenting instincts even though I know I am right. In the book, David's parents had to go through constant criticism and critique of their parenting skills and they felt, rightly so, that they could not protest too much or help would be pulled. And what struck me so much was that (in my very limited experience) if your child had a physical disability that was very obvious, although you would still have a horrific time of things, would you still have to constantly justify yourself? And go into your families very personal psychological history etc? There seems to be a pervasive feeling that disorders relating to the mental rather than physical states are ultimately down to bad parenting. David's family had to fill in the same forms for social services that those who are abusing their children must fill in, they had to tweak the answers to fit.

That scared me. It scares me thinking anyone is casting aspersions on me as a Mother, when I know it will affect me and DS long term. I just wish I could feel secure, that we were safe, and not being treated as the enemy by the people who we are seeking out for help. I feel I am imposing each time I try to get help for DS, and as I posted yesterday, my HV is still being blatantly insulting about what is happening with DS. It just makes me so sad.

So on that note I will end this long post. Just want to add a disclaimer to those of you who have children who are physically disabled: I dont in any way mean that you have it "easier" because your child's disability is obvious. I just mean that, it would be obvious insanity to blame something like a paraplegic child on bad parenting. Or diabetes. Or any number of physical problems. But with autism it seems to be the default setting: poor parents. You start there and you have to prove from that point onwards it isnt the case. It just makes me sad. I have not been given the benefit of the doubt once in this whole issue by any health professional. Nor have I been given one ounce of help. I feel judged by people who are in a position to write their opinions down on me and I can not contest it. Its just scary ground.

Thanks for listening.

I've reviewed this book here I loved it. Every time ds1 smashes his head against the car window (like yesterday ) I think of this book. And I was thinking about the car key thing recently as ds1 has started getting similarly obsessed with sequences. So for example if we take something out of the oven/turn on the kettle etc without him seeing we have to do it again or he has a total meltdown.

I also did make a decision to sod the gawpers/easily offended and take ds1 to places where he wants to go after reading it. And I've stuck to that.

It's a great book, I think no matter where your child is on the spectrum, you will find echoes of him/her in this book. About the mummy thing though, DS1 did not seem to work out who I was til he was about three and I've been called 'Dummy' ever since.

HereIdraw can't say much more than that i have read your whole post and glad I did. And I really feel for and with you.

My ds has a mild physical disability and yes, I have it a lot easier than you.

The number of times I read on here that parents feel undermined by those supposed to help them makes me want to start a national campaign!

Sounds like a good, realistic book.
My ds2 has physical disabilities (mild CP) & ASD & YES you are right, I have never had to justify my parenting when discussing ds2's CP. But I do sometimes feel like we are under the spotlight when talking about his ASD.
Also the route to dx is not as clear cut.. not always a clear cause & effect IYKWIM.

We are fortunate that ds2's physical disabilities are mild (he can walk, albeit wobbly) & I feel guilty claiming DLA for example when there is no comaprison between ds2 & a child with severe CP.

DS2's ASD has far greater impact on our family life than his CP, it is hard at time & heartbreaking.
It is his ASD that will prevent him from leading an indipendant life as an adult.

DS2'S obsession is with his brother, it is so consuming & ds1 really suffers.

thank you for understanding.

(that review was fantastically written by the way!)

I think what it is that is so wrong is that if your child has ASD or I presume any number of other disorders which can not be identified by x-rays or blood tests then you are truly guilty until proven innocent. And it seems almost impossible to prove yourself innocent. So each time you speak to a professional you must be on your best behaviour, and perversely pray your child will be on their worst, just so that they dont then accuse you of making the whole thing up, which often happens. And you have to jump through hoop after hoop. You have to sit when they say sit and beg when they say beg and if you complain... well then there are signs all over every hospital saying nhs employees must not be subjected to abuse. (my DH is an NHS employee by the way so I say this fairly) and even when I have said friendly complaints but in an annoyed tone of voice those signs have been pointed out to me. (I feel I must say this was a long time ago relating to a health problem DH had, not in relation to ASD - I am making the point that the onus is on you to keep the relationship moving smoothly.)

I fully appreciate that NHS employees deserve respect and a safe working environment. As I said my DH is a manager of a non medical side of a department in our local hospital, even if he werent I would understand they needed respect. But you know those signs were put there for the angry drunks and the violent who-evers. Were they meant to be there to make sure that you did not question the gospel being dictated to you by doctors who do not listen? Ultimately, a doctor is the same as a plumber. They have a skill and a service to offer the public. They are not superior people. When the doctor has blocked drains he calls a plumber and the plumber is the one who knows how to fix them, ergo the doctor is at the mercy of the plumber. I just use this example to point out that really, its obvious, but we are all people. I doubt my shit HV or GP would know how to do all the things I know how to do. It doesnt make me or them superior, we just have different skills. And we should be able to go to each other to make use of those skills as and when we need them, without fear of being patronised or attacked.

Oh god... sorry for ranting again! I know I keep coming on here and writing all these long posts. I just need to talk to people who understand. Thanks again for listening.

sorry you've been through such a rotten time with the health profs thus far. try not to panic though or assume that you will be treated badly - I had an awful time with judgmental HVs when DS was small, due to recovering from ante-natal depression - but the professionals I've dealt with over DS and language delay and suspected ASD have been courteous and non-judgmental - well apart from one snotty cow GP who gave me a lecture about not labelling children because I dared to say waiting a year for a paed appointment was worrying me - everyone else has at the least been kind, if not actually always all that helpful...

sadly you do have to chase up every referral made to make sure it actually reached them...

I found the Surestart/Children's centres to be of some use, and to provide some moral support with it all. If you are near one it may be worth touching base with them,.

Yes, I remember this well. My ds is now 6yrs old and well into the school system with staff who now know him and generally 'get' how he is. However, when he was younger (and pre-dx), I regularly had professionals, family and friends dispensing 'advice' to me on the things I should be doing with ds to encourage his speech and development (with the implication that I hadn't tried anything myself), so:

• what about not giving him his milk so that he has to ask for it?
• do you talk to him?
• does he hear much speech around him?
• here, have this book and try the suggestions inside it (cos you obviously don't have any idea about parenting, otherwise your ds would be speaking like every other kid)
• do you ever point things out to him?

and so on and so on, ad nauseum.

I totally agree that if a child is physically very able and appears 'normal', then there is always an expectation that that child will (and even should, with the right input) develop any number of skills - even if those skills are beyond that child.

I'm afraid it's just human nature. Even now, if my ds has a new member of staff at school, I will undoubtedly be advised to try this or that technique with him. Next.

You just have to learn to bite your tongue, smile sweetly and allow it to wash over you - not always easy though!

I should add that my ds is still completely non-verbal and my feeling is that he will remain so - which is completely fine.

I had that too Manny. Was asked to fill in a detailed questionnaire asking things like 'what sorts of games do you play at home?' and 'describe what you do at a weekend'. I was sooooo tempted to write 'go to the pub and leave him outside with a packet of crisps' but guess (correctly I'm sure) the pissed off irony would be missed.

"And what struck me so much was that (in my very limited experience) if your child had a physical disability that was very obvious, although you would still have a horrific time of things, would you still have to constantly justify yourself?"

This is the only bit of your very moving post that I can answer from experience. And the answer is yes. Many physical disabilities are not diagnosed straightaway (took 7 years for dd), so there is still plenty of chances to make the parent (read mother) feel that she is imagining it or making it up or that the child is only behaving in this odd way (unable to walk/pretending to be in pain) because of inadequate parenting.

We were suspected of sexual abuse because dd was unable to put weight on her ankles. Such odd behaviour must result from trauma- what is the typical trauma experienced by children? Yes right- "we're afraid we won't be able to let your dd leave the hospital, mrs Cory".

A disability being physical doesn't protect you.

Even after diagnosis, there are still plenty of opportunities to grind a mother's face into the dust.

Does your child need a wheelchair? But that's wrong, that's just going to make her feel disabled, do you want her to feel disabled? (mother causing disability because she enjoys the thrill)

Does she not get better when she should? Ah, but are you sure as a mother that you are pushing her hard enough, that you are doing enough to encourage her to think of herself as normal? (disability caused by overprotective mother)

What about absences from school? Your child is absent more than other children- are you sure you don't have family problems? We'd better send a social worker round. (disability caused by dysfunctional family)

It never ends. I spent 7 years of dd's life knowing something was wrong but unable to put a finger to it. The remaining 5 I have spent justifying myself. It is particularly hard because her condition comes and goes: she can be in a wheelchair one moment and get up and walk the next. Or set off to cross the road and collapse before she gets to the other side.

And there is so much pressure, even with a physically disabled child, to push them into things that you feel are damaging because it is implied that if you don't go along with what the doctor says, then it's you causing the disability. I know I caused damage to dd's joints when the first treatment started, because I was afraid of her being taken into care if I refused to cooperate. (Years later we have been told that the best treatment is to pace herself and not overstrain.)

Sorry, I know this won't help you. And I do think your life is hard in a way that I can't even begin to imagine. But the constant need for justification is something that is common to both of us- and it sucks!

cory thanks very much for giving me your perspective, I was sure there were parents just like you but I havent had any personal experience of it.

The thing is, there is no competition amongst us mothers of children who are disabled in whatever way. Or I suppose, there probably is, it would be naive of me to think it was impossible. But most of us, we are just trying to help our children & ourselves as best we can and we can see another family who is in the same situation.

I am very sorry for what you have been through, honestly it sounds pretty terrifying and upsetting, to be questioned like that about abuse. You must have been living in fear.

I think we have a lot of fears in common HereIDraw. That constant exhausting struggle of trying to do your best for your child
at the same time as being questioned from outside- and still having to remain firm and confident (at least on the outside!) for the child's sake, while your confidence is being undermined. I'm sure there's nothing I can tell you about that that you don't know already.

I agree cory. What a PITA, eh? Wouldnt life just be easier if we either, (A) had children who were healthy in every respect or (B) were treated as valued individuals and respected by health professionals.

I do still hold out hope that the NHS can redeem themselves when it comes to DS. When we (eventually) are graced with the presence of the specialist, I hear she is very good, so I hope she will see things as they are. If I can just get her on side the HV can go fuck herself.

IME once you have one person on your side that makes a big difference. It will be a lot easier to tell that HV where she gets off.

Sorry, I somehow managed to miss this post.

HIDTL, your insights to this books are awe inspiring. I really need to read it now. You are going through such a hard time at the moment, I really feel for you. I had to fight with my HV and doctors for 18 months to get ds2 referred to the paed. At one point my HV's only idea was to send a nursery nurse come to my house and tell me that I was giving in to ds2's wants too easily, to use a naughty step and to stop allowing him to rule the household . Once I did get the paed appt through, dx was very quick luckily as the paed who done it was leaving the hospital and wanted to see it through. I know this is not the case for a lot of families awaiting a dx and am thankful that we were this lucky. I am still waiting for HV to apologise for her brashness.

Cory, what you have discribed is terrible. 7 years of that, I am surprised you are strong enough to tell that. You are truely amazing to come out of that a better person.

With regards to having to explain/justify yourself to the professionals, I find it is harder having to justify yourself or more so your child to family and those around you. My mother just doesn't "get" that ds2 has autism, she thinks he is just behind in his developement and that he will catch up when he is ready We constantly argue about it. At the moment she thinks his melt downs are just ds2 having delayed terrible twos. She also thinks that I am purposefully keeping him in nappies so that I can claim DLA. Yes, I suppose she is correct in that, because I so much enjoy having to pin him down and change his nappy, I love having to wipe poo off the walls of his bedroom because he thought it fun to paint them at 3am and I get so excited when he gets it all over his hands and touches everything in sight. And I do it all for the £170 a month I get extra

5inthebed you are making me pray my pead will be leaving soon and take a big interest in DS! I am glad you think the book sounds good - it was very good and eye opening for me as well. Very easy to read too, the Dad is the one writing it though it is really written he and his wife together, but many times they reminded me of me and DH so I could easily relate.

That must be so frustrating and infuriating for you about your Mum I just cant imagine that. Well I can but I dont want to! It isnt nice at all is it. As if any amount of money would be worth the worry and stress and work and guilt. I hope your Mum sees the truth soon for your sake.

A lot of our friends and family have been supportive but I have also had a lot of comments about how DS is too attached to me because he hasnt attended nursery (he is only just now starting preschool 1 morning a week) and I had PND so perhaps that has messed DS up etc. Very disheartening. As if I havent punished myself enough for having PND.

I had really bad PND after having ds1 and mildly after ds2. DS2 is the one with autism. Having PND is in no way a reason why your ds has ASD! So please don't think that way.

No I dont think that way, but some friends have suggested it which just made me feel bad.

That was nice of your "friends"