Does the guilt ever go away???? :(

[Becaroooo]

Just wondered.

Am feeling that I have failed my ds1 badly.

He is now - finally! - in the process of getting a dx but he is nearly 8 and I have had concerns since he was a baby and I am so angry at myself that I have allowed myself to be "fobbed off" by so called "experts", HVs, GPs and teachers for so long.

Can you get past the guilt?

Everytime I look at ds1 I feel like crying.

Dh doesnt really understand...he is still coming to terms with the fact that ds1 has SN.

It will eventually get less.

My youngest didn't grow. For years. For a couple of years his feet stayed the same size, he was tiny. he was thin. grey skinned, tired... he would flop onto the sofa and cry.

I was telling everyone that something was wrong. and pleading for help. Even his paed (both my children have autism and have a lot of specialist involvement) was telling me that he was "in proportion" and nothing was wrong.

even my husband didn't believe me.

But I KNEW.

Anyway. Eventually he stopped eating and turned into a walking skeleton at that point, my husband agreed something was wrong. we went to gp and my husband fell out with her. she eventually agreed to blood tests after my husband said that it is not normal to have to forcefeed a child complan to stop them from starving (which is what we had had to start doing) She said he would have the blood tests even though there was "nothing wrong with him" and made a point of saying how horrible the tests would be for him

anyway. tests come back. my son was very badly anaemic. put on iron suppliments and he sprang to life in no time! he just doesn't absorb iron properly for some reason.

I beat myself up for years. WHY hadn't I done more to make people listen. I had failed him etc etc

I did what I could. I tried. I kept trying.

I still feel bad sometimes. But I don't get upset about it any more.

I hope that helps you. xx

Hi Becaroooo - it does, but you need to give yourself time.

I think most of us spent weeks in tears when our dc were first diagnosed, but you have nothing to feel guilty about, the important thing is that you now have a dx and things will start to get better.

Take care of yourself x

Oh hectate how awful for you! I am anaemic and it really does wear you out.

So glad your ds is ok now.

It does help to know I am not the only one who listened to the "experts". Thank you for sharing that x

I'm glad it helped.

You do listen to them. It's natural. You do think that they know what they are talking about.

And they are SO dismissive that it makes you wither under their gaze.

Well. it did. Not any more. I never accept anything the 'experts' tell me any more. I learned the hard way that they often haven't got a clue.

Now you have too. It's a hard lesson. but onwards and upwards! You can now fight for what your child needs because you have cast off this - how to put it? - feeling of deference? deferance? whatever towards 'experts'.

They're just people who have read a few books and think they know everything and get arsy when you don't kiss their arse and hang on their every word.

oh boy i know what you nmean about the guilt i still cry now and again but more from frustration/anger with the so called "profeshionals" it will get better but we all still have bad days took till my DS was 9yo to get his dx so i totally know where your comming from got blamed ,fobbed off,put off ect ect i feel like a useless mum but i dont know if you saw my thread the other day but at the weekend i was having a particularly bad time tearful and angry rolled into one nothing has been going right and i told a friend im a terrible mum i thought DS was off upstairs playing he waltzed in put his hands around my face (hes same height as me lol) and said "no your not your the best mum in the world", and if that doesnt make you feel better nothing will , i expect when hes a bit bigger he will say same thing to you and all the mums on MN as if we wer not good mums we woudlnt be on here asking questions, and helping each other YOUR A GREAT MUM saying that on behalf of your LO (((hugs)))

I think it's more a working through the guilt rather than passing it. Use your angst in a positive way to help your DS get the support you both need.
Most of us started by listening and not questioning professionals. But it is healthy to ask questions, and ask why they have given that advice. It does not mean that you do not trust them, you just want to understand how they formed their opinions.
Eventually you will gather round you those professionals that you trust - and those you need to be wary of!

Becaroooo

Your DS is not at the age of maturation, which is the age at which any development diagnosis can start to be done, until the age of maturation children can grow out of may development problems as we all develop different cognitive skills at different ages and different rates until that age.

The real problem in the UK is that the various professionals who are supposed to help us and provide advice about our children do not talk to one another, and as a result do not have a good understanding of each child and the issues they may have. There is also a severe lack of training in all of the required specialised areas. There are too many Jack of all trades but masters of none; GPs, HVs, and teachers fit that description. So do not even bother to keep upto date with current medical research. This does not aplly to Speech and Langauge Pathologists who have to prove that they have been on various course about recent medical and technical developments as part of their 2 year licence review, which should also apply to GPs, HVs and teachers.

The guilt thing never goes, and when they are teenagers coping with these issues can be a real problem especially if they go into teenage denial.

you are your DS best advocate, and you will be the one best able to help him to self advocate, with his peers, and the outside world.

The real issue it to gain a great public awareness of the issues your DS faces so that others will be best able to understand him and provide the support he may need. this can become a lifes work. (I have been on this mission now for over 15 years now for my children who have a disability which when we started no one had heard of, so we are always wishing things had been different)

How can you blame yourself for being failed by the 'experts' that are PAID to help him.

Don't turn that anger on yourself. You need to stay in one piece and use it to make sure no-one ever fails him again.

dolfrog sorry...I am so new to all this...what does that mean - "not at the age of maturation?"
Your dc are very lucky to have had you in their corner.

TMD I guess, like hectate, I blame myself because I always knew something was wrong. I let my dh, family, HVs, GPs and paeds fob me off because I wanted to believe he was ok My self delusion has not helped my son - or me.

You are all very kind and I am relieved I am not the only one to feel like this and that it can get better.

No one will ever fail my son again (I include myself in that) I will crawl on my knees through broken glass before that happens.

(I bet my sons new HT is regretting the day I walked through her door!!! )

I expect to carry my guilt forever becaroooo. You are certainly not alone in feeeling guilty. I want to believe that it can get better though.

at your ds' new headteacher!

Becaroooo
The age of maturation is between 7 and 8 years old.
All children from birth until this age develop the different cognitive abilities at different times and at different rates.
After this age any remaining problems are either a severe development delay or a clinically diagnosable disability. This the age that children STOP growing out of development problems, and when Formal education should really begin.

Diagnostic consultants are loathe diagnose any clinical disability before this age. Most of the developmental disabilities have a genetic origin so if there is a family history of similar issues then they may be prepared to investigate prior to the age of maturation.

Part of the problem in the UK is that formal education in the K starts years before the age of maturation, or years before children are cognitively ready to start formal education. Advanced countries such as those in Scandinavia have already recognised this.

my children were diagnosed with autism at 2.5 and 3, and there was a very well used early years advisory service that used to send a home visiting teacher 3 times a week.

I am alarmed to hear this age of maturation stuff, since it is so well known that with autism, early intervention is crucial.

Beca, its completely normal, we all feel it. It never goes, but it does wax and wane. Every time they come up against a challenge that other children would just breeze through the guilt rises up again, but in between times, when progress is being made and things are quieter you do eventually start to have some degree of acceptance at least.

We also get to celebrate so many small things that our dcs do or achieve, but which other parents take for granted, but again these successes can sometimes be tinged with a bit of sadness, which opens the door to the guilt.

My ds was the same age as yours when I finally had enough of trying to get someone to take me seriously and went into battle. I know I will always regret not doing it sooner, but he has come such a long way in the relatively short time since then (he'll be 9 in a couple of weeks) and I have learned such a lot and found such excellent support - both on here and in rl that I don't tend to feel the same levels of despair I had in the beginning.

Nothing is set in stone and just because our dcs aren't necessarily going to turn out the way we predicted (although to be honest, whose children do? I for one know I'm nothing like the person my mother would have liked me to become) doesn't mean they can't live happy fulfilled lives and have a lot to offer the world.

As others have said, you have nothing to be guilty about, the experts should have listened. They had no right to fob you off. It was their job to respect your knowledge of your child as his mother, to listen, to hear, to 'know' and to make sure they exhausted every option finding out, instead of being egotistical naysayers.

I still get wibbly when I have to talk to certain professionals, because even after I was proven right, they still treat me like an over-anxious mother who can't possibly know anything of import against their saintly expertise. Not all professionals, some have honestly been fantastic, but certainly enough to still make me stress about being taken seriously. I am getting better, but think I still have a long way to go after having my confidence knocked so many times, despite actually being right.

I have recently come to the conclusion that guilt is a bit of a wasted emotion, far better to channel that emotion into the anger that enables me to fight for my ds.

I'm not saying it always works like that. I have my fair share of sobbing over my failures as a mother - had a good sob last night actually, after ds came out of school in a terrible state thanks to the way his teacher had (badly) handled a situation. But my feeling guilty isn't going to help him, so I have my sob, then take a deep breath, shake myself and keep on fighting - just like you will.

You are a super mum and you have done so much right - be proud of your achievement in producing and bringing up such a lovely, special little boy.

I think sometimes anaemia is overlooked by GPs because children in this country are not supposed to get it - like rickets (on the increase apparently)!
DGS was only 4 1/2 lb at birth 37+4 so not considered prem but term!!
At 6 months he started rolling his eyes up and going limp so we took him to A&E and the first thing the doc there said is 'is he always this pale?' We had noticed he was pale but thought it was because it was winter and DD was busy with colic, sleeping etc issues. Both my DD and myself are nurses fgs!!
DDd been giving him abidec, omega oil bfing to give him the best, but the paed should have looked at this as he had IUGR. His Hb was 6.8 - he was transparent and yes we both feel bloody guilty but also angry that the experts didnt look at all the facts medically and put him on iron straight away

HecateTheCrone

I have just had a look at the Wikipedia Autism article, which discusses early identification and intervention by three years of age, in the Management section of the article.
It says that "claims that intervention by around age three years is crucial are not substantiated" and provides a UK 2009 research review paper in support.
Systematic review of early intensive behavioral interventions for children with autism.

with the best will in the world, wiki is wrong.

if you are to teach someone self help skills, sharing, social interaction, the basics of turn taking etc, you cannot wait until they are 7 or 8 or 9 or 10 to do so and expect to get the same results that you will get if you start when they are 2 or 3 or even 4.

if you wait until someone has well established routines and habits and has had years of certain socially unacceptable behaviours before you try to 'train' them, you will not, generally, have the best outcome.

imagine teaching a 3 yr old to share.
imagine deciding that you didn't need to do that and you allowed them to behave in a socially unacceptable way and then when they were 9 you tried to introduce sharing?
who do you think would adapt more easily, the 3 yr old or the 9 yr old?

the younger the child, the better.

no research paper in the world is going to convince me that you can begin to train a 10 yr old and will have the same degree of success as if you started when they were 3.

their behaviours are much more ingrained and so much more part of who they are.

dolfrog I know that study well. It is flawed in many ways and is pretty much the ONLY study that implies early intervention can be ineffective.

The woman is also heavily attached and involved in a particular type of intervention that cannot be done earlier than school age.

It's a bit like saying that breastmilk is not perfect due to the toxins in it from the environment. That might be true, but it isn't a reason not to breastfeed.

In the same way EIBI isn't perfect due to toxins in the environment.

Further, it is and has been accepted for decades that early intervention is essential for ALL children, so I'm a bit confused why we can now exempt children with autism from that.

I have to say I'm at that wiki article but I think it is more that accepted practice is way behind latest research.

Thanks for the explaination...I certainly agree that formal education starts way too early in this country dolfrog but I think that the earlier the intervention the better tbh.

I wonder if I am suddenly being taken seriously because ds1 is now older???????? Yet he as the same issues he had 2 years ago!!!!!!!!

Spoke to a friend this morning about it (met her through baby massage classes with ds2) and she was very supportive and understanding.

moose Thank you for your lovely post. I suppose you are right..some days it will be better than others.

Becaroo, Early intervention is essential, of course.

A month that you spend working on something when they are 4, will require 3 months when they are 9, and a year when they are 15.

For this reason we ALL regret not having started earlier. But really, the only thing you can do, is praise yourself for your efforts right now and get on with it, puting in the 2 months to save yourself that year later.

Absolutely no good beating yourself up that 2 months of work could have been 1 month.

Your ds has a developmental DELAY. Not a developmental HALT and you are determined to work hard for him.

He's a very lucky little boy!

Thanks TMD

sigh. He is such a great kid, you know?? At Beavers last night there was a new boy (he is quite small for a 6 year old and was a bit taken aback by all the bigger boys I think) and ds1 was so sweet with him...played with him when he first came in and when he was gotten out during a game, ds1 went up and patted him on the back and told him how well he had done! I was very proud

He is such a fantastic big brother to ds2 too...seeing them together and cuddling up on the sofa makes me so happy.

I am very lucky. I need to focus on that...not what could have been.

I dunno.

Today I'm also feeling incredibly down and stressed.

If it's not one thing it's another.

How am I ever going to get DS and DD to the place they should be.

With DD the gap widens each day. School are fantastic. And it's still not helping.

DS is only mostly fine but also mostly anxious and unhappy.

I would feel guilty - but I'm too depressed :(

I can't give up. But I really don't know how I can keep going on either.

Indigo, sorry to hear you are so down.

Give yourself a break. Take some time out and allow yourself to not think and stress about it for a while. Is there any way you could plan a day out at the weekend as a total break from it all?

Sometimes it does all just get too much, no-one can keep up the pressure 24/7 and I honestly believe that you can't have the strength you need to push and fight without taking care of yourself and allowing yourself a break from it all every now and again.

Sorry I can't be anymore helpful. ((hug))

Becaroooo

The real problem is that they have not yet done enough research to understand the real underlying causes of Autism, and the4 multiple information processing disorders that combine to cause the wide range of problems that make up the Autistic Spectrum.
So much is based on the observation of behavior, with little understanding of the information processing problems that instigate that type of behavior.
And if they do not understand the underlying information processing deficits and or disorders, how can they begin to help develop natural coping strategies to work around these problems.
So Early intervention sounds more like having more control over an autistic child rather than understanding their real problems and needs.

dolfrog, autism is an organic disorder which means you can intervene to support the development of the neural pathways. By focussing specifically on the social experience and giving the child to practise this over and over again the social pathways are built.

This isn't true of just children with autism, but of all children. But nt children's brains are already developing in an nt way and do not need the rigid confinement that you call 'control' to guide their brain development.

dolfrog, I owuld agree that there is not always much knowledge to be found concerning some of the underlying processign issues that come along with autism.

but what you are advocating - waiting until 7/8 and that Early Intervention is about being in control rather than helping the child? that is utter bollocks.

Hecate is right - once a habit has becom embedded, it is incredibly difficult to overcome it. grab the chance while it is still a novelty, beofre it becomes so ingrained, and you have a fighting chance of getting rid of undesirable behaviour.

autism aside - any child would struggle with a sudden and complete change of rules at the age of 7/8 - you can't be serious about this.

the only intervention for autism that has a proven track record - with empirical data backing it up over decades of study is ABA. and that advocates early intervention.

waiting until maturation is just rubbish - it has been disproved time and again.