How the hell could I have not known????

[propercheesed]

Hi everyone, as you may of guessed by my previous threads we have had many ups and downs.

Things are improving at school due to a lovely Ed psych who takes no shite, and an equally lovely SENCO...we have been directed back to CAMHS by the Ed psych after they had decided to see if her strategies helped(due to our main concerns being DS behaviour at school).

I am taking DS flapping as a sign he is happy at home(around me) so I can stop stressing about that.

Now the question on my mind is How could I of not known?, I must look like such a bad mother to all these professionals when I rhymn off all the 'RED FLAGS' which I obviously failed to act upon (I certainly feel like one at the mo)!

I would say from my perspective I didnt recognise or spot any red flags till it was thrown directly at me by the school similar to a cream pie being squashed in your face. :)

Reason? because I knew how to handle my son, was similar in so many respects to him, thought boys were always like this and had no major hic ups till he hit school age and everything underlying within him erupted. Socalising, anxiety, communication and body language and senory issues. Thought his throat clearing as a toddler was a sign he would need his tonsils out like his sister who made the same noise when she was young.

Its easy not to spot all the signs and the proffessionals wont look at you or think of you as a bad mother.

Hi propercheesed,

I don't know your back story but I do understand how you feel. I'd always just accepted DS the way he was and it was only when he was assessed by a community paed and we came away with a long list of problems that I thought "shitting hell, where do we go from here then, how did I not know that his problems would have an effect on his whole bloody life?"

I look back at DS's early years (in hindsight) and can see so many signs, now that I'm a bit more knowledgeable about his problems. For example, he's on the waiting list for SaLT but I'd never have thought there was a problem with his speech and comprehension had it not been pointed out to me, as DS is just DS to me. Plus I've had years of people saying "Oh he's a boy, he'll catch up in the end" so sadly I probably became a bit complacent about things, which makes me feel guilty.

DS has dyspraxia, low muscle tone, hypermobilty (all joints) and suspected ASD, all diagnosed at the age of 6; but I look back to the years previous and can see so many 'red flags' and wonder why it took me so long to see it for myself

Please don't beat yourself up (says she ) Sounds like the SENCO and Ed psych are on the ball, try not to look back and work towards the future, which is what I'm trying to do

coff33pot put it much more succinctly than me

I always thought the throat clearing was DS's reflux!

I haven't read your previous threads but you certainly aren't a bad mother and I am sure you don't look like one either.

We love our children for who they are, unconditionally and as a whole person. We have known them from birth and seen them grow and develop - there is no startling 1st meeting for us. The children remain as they have always been. The problem/difficult/different behaviour is just part of them as much as the good and the lovely and diagnosing requires anybody to see the problems in isolation. A professional has a totally different way of looking at a child to you as a parent.

And they are professionals. They have been trained in looking at conditions that so many of us as parents have never come across before. We aren't experts and you can't be expected to know what they know.

The important thing was that when it became apparent that your DS had problems you did something about it - you did act and your DS is getting help and you are getting support.

I am glad things are improving for you.

proper I felt exactly the same as you did, and I had similar replies when I posted a similar thread - others who felt just the same. You will start to feel better, I promise.

I think like coff33 says, we learn how to deal with our DC and things sometimes don't seem out of the ordinary.

I sat in on DS first Speech and Language assessment. I knew I couldn't say anything as they were very specific questions and answers, but I was screaming inside thinking "why don't you just ask the question this way, he'll know the answer then!"

It was then I realised that me and DH had without thinking changed the way we spoke to DS, so that he could understand. We had done this instinctively. You may well find that you have acted in a unique way with your DS, making you more aware of his needs than you give yourself credit for.

Your DS has a lot going for him. A mum who cares and has responded in the right way, and a good Ed Psych and SENCO. All 3 are worth their weight in gold.

Propercheesed I think what you are feeling is a completely normal reaction, that many of us have felt. I know I have.

I don't think the professionals will be thinking you are a bad mum, in fact, it was ds's Ed Psych that told me to stop being so hard on myself. She said the fact that we didn't know earlier was because we were good parents who responded to his needs and loved him unconditionally. I'm don't know if your ds is your first dc, but she also said it's more common for people not to know sooner with their first child, because they have no frame of reference for how nt children develop and behave.

As others have said, your ds is a lucky boy to have you as his mum and with help from your EP and SENCO etc things can only get better.

I am feeling very much like you today. My ds is on the road for a diagnosis of dyspraxia. We too found reasons for his delayed development in some areas. I feel that I am now looking at him through different eyes, i know that it is important and he will get the help he needs but I feel awful that I missed this and my heart feels truly broken. I am so worried that the older he gets the more different he will become and he will get bullied. I'm scared and i feel that what started out as me jumping through a hoop for his teacher is snowballing out of my control.

Thanks everyone for your messages...I am really struggling to drink my at the moment through snot and tears but I feel better knowing I was not the only mother not to notice. I must admit when Ed Psych was asking DS questions about his sister and he replied I would prefer it if she was my girlfriend instead of my sister I was thinking yes yes a girl who is a friend without even realising how inappropriate that would sound to others.

Yes DS is my first DC but I think I posted wrong somewhere that may of been mis-read as him being my 6th!! what can I say i'm a slow learner!!

Unfortunatly I am watching my DD who has just turned 3 like a hawk, and noticing things which I don't know should be typical of her age or something else eg shouting at anyone who sings to her while covering her ears also does this if she hears banging or drilling etc, constantly chewing on things be that her sleeve, coat, fingers. wanting to go out with others but wanting me to go too so we end up with her screaming at the door that she "doesn't like" for 45 mins until she is completely drained, very very fussy eater, if you tell her she is beautiful she will look at you very serious and tell you "no, I'm ***!"

Oh well her 3 yr assessement is due so I will mention the above and see what HV thinks.

coff33pot sums it up exactly. We didn't pick up on any of the red flags, until the pre-school teacher asked to 'have a word' about DS and without saying the word autistic, gently suggested he was in a world of his own and suggested he have a referral, and up until then we had both known he was hard work, had some issues but we fully accepted and loved DS for who he was, and accepted his quirks and had not picked up on any of the red flags (but hindsight is a wonderful enlightening thing!), but the HV also did not pick up on any of the red flags and DS2 passed all his developmental checks with her, despite very obvious signs! Don't worry OP, I know several parents who would tell you exactly the same, until it is pointed out to them.

Amapolean hugs are you struggling to drink your too?? I actually find it painful sometimes (feels like my heart will explode) to even look at my DS and its hard to tell some how you feel because they just think you should get on with it...like things are moving on so get over it! but you carn't its very hard xx

Yes Proper, there is much snot and gasping of breath too, hehehe. You have summed up exactly how I feel. Hugs to you too. xx

My mum was a primary school teacher for 30 years and none of us noticed anything. He was just DS. He went to FT day nursery from 18 months with very experienced nursery staff. They didn't notice anything.

It was only until he was 5 and the other children started maturing and he didn't that it became obvious enough for the school to mention something and that was only ?dyspraxia. The SENCO didn't believe that he had ASD when I said that he was going for assessment.

We were all wrong.... but now it is good that we know. No matter that he is now 6. He knows. He has got a name for how he feels. We have got a name for how he feels.

I've been through the snot and tears. Now I'm getting on and seeing it for what it is...just one part of him and his personality...

Take care and don't beat yourself up.

Its hard and I send you hugs for that as I felt the same way initially. But it does change x

Give yourself time and after a couple appointments you soon kick into supermum action mode wanting everything sorted to seek help and strategies for your child and school etc. This takes over and you start using your energy in a positive direction.

For now have the biggest bar of chocolate to wash down with your :)

Propercheesed - before school started, I thought DS was just possibly on the very mild end of the Asperger's spectrum (like most of the maths and physics nerds in the family), and that even if we had him assessed, he was bright enough not to need or be offered any help. I had a headful of misconceptions, and a (now shaming) feeling that a label would somehow be an insult to our lovely, funny son.

He has a 32.5 hour a week statement, with a 1-to-1 TA. He's still my lovely, funny son!

Like everyone else who has posted I felt guilty then angry that I and all the other professionals had'nt noticed that my DS had Aspergers until he was 11.

What they did say at CAHMS was that it was testiment to our dedication to help our DS that he had got to 11 before having a DX. We just thought we were doing what every parent was also doing for their child!

At the time the compliment didnt register in a way it still doesnt and I wish we had help for him sooner but you cant change the way things are.

Don't beat yourself up for not realising sooner.

I have a newspaper cutting in my files about a couple who were both GPs, yet failed to recognise their daughter had Aspergers.

You're a parent - not an expert in cognitive deficets.

I didn't spot that DS was on the spectrum until he was 8, at a point where he had truly diverged from the rest of his peers.
As an experienced teacher, I thought he just hated school as he was no bother at home...turned out that the way we run our house is very Aspie friendly and nothing much really triggered a meltdown. So we'd managed to help the AS hide from view.

Another one here whose ds got a late diagnosis - ds was 12 when he got his AS dx - before that was ADD with autistic traits at 7, before that all down to his glue ear/mild hearing loss. I think AS particularly is not always obvious and some traits will only show up strongly when the child is put in a stressful situation, so as joencaitlinsmum says it can be a reflection of you doing a good job at meeting your ds needs instinctively when he was just under your care at home.

My DD has severe autism and we used to insist she didn't have ASD can't really deny it now when she sits admiring her hand for ages but we were clueless.

Same here, Propercheesed. We had absolutely no idea or suspicion that anything was amiss until ds was 10. School suggested it to us and immediately I thought ' how on earth could I not have noticed anything?'. I am still incredulous that we never suspected anything-no developmental delays,very sociable etc. He was dx with Aspergers last year and we are still feeling our way really, trying to get our heads round it all etc. I think its very common for Aspergers not to become apparant until the child is much older, in a lot of cases.

and the professionals are not always on the ball. so don't feel judged
I joked (how awful does that sound now) that DS2 was on the spectrum from about 2. By 7 with loads of social issues at school, hyperlexia, etc, etc, etc, I sat in a room with an Ed Psych (who had observed him at several ages) comm. paed. Sw and school staff and school SN staff all scratching their heads and wearily wondering what to do next. When I said
"Do you think he might have an autistic spectrum disorder" all the lights switched on .. you'd have thought they were going to stand on the desks and sing a bloody hallelujah chorus, they clearly hadn't thought it before.
The flip side of course of self directed diagnosis is we still think its out bloody fault . Pour another cuppa for yourself, snot make the tea taste yucky, and look after yourself, you are a good mum and your DS needs you.