Describe the realisation that your child had SN....

[Lougle]

For me, [[http://www.mumsnet.com/Talk/special_needs/609576-iep-at-preschool/AllOnOnePage#12422518 this thread, where I discover DD1 has SN, is like the scene from Friends in "The one that could have been":

Ross: Hey! There are some men who will do whatever it takes to make their marriage work! Okay? That are some men who will stand by and-and watch as their wives engage in-in what can only be described as a twosome with some-some woman she barely knows from the gym!

Rachel: Well, you might want to tell him it sounds like his wife is (whispers) gay.

Ross: She is not?(Realizes) She?s gay. Oh my God. She is so gay!

I spent most of that thread saying "she is so NT, well except for this, and that and that, and this.....She has SN!

-iep-at-preschool/AllOnOnePage#12422518 this thread

Riven, was that an overwhelming all-at-once thing, (obviously, the neonatologist lacking tact wouldn't have helped) or did you kind of 'accept' it and then the realisation of its full implications hit you over time?

In some ways, I have always felt emotionally that if the midwife who thought DD1 looked as if she had Downs' Syndrome had acted more assertively, then we would have been spared the 2 years 9 months of wondering what we were doing wrong, starting with the night she was born, sat at home when suddenly she started crying at 10pm and just didn't stop.

Oh Lougle I'm sorry for raising the zombie. Hope you're okay.

Oh, it's you! I had no idea. On the other thread, I thought "yeah, and who are you?" because a new poster had just popped up saying 'I am always ranty'.

No, thank you for reminding me. It is quite amazing to see a bit of history. I was a different person then. Completely and truly. I honestly thought that DD was NT, and that the preschool were being quite hysterical. During that thread, it was like a picture forming. Gradually hearing the penny drop.

Bizarre, but the thought of her having started school with us still not knowing why she is the way she is, and why we couldn't control her, etc. No, much better to have found out 2 years ago, and we had 2 years to go through the whole flag-investigation-dx-intervention-statement-placement cycle. Perfect.

I know but I should have thought first. I remember reading my early posts was quite painful. I found it quite sad to see myself then, clutching at straws, hoping against hope, having people kindly encourage me down the most frightening path.

DS is the same child, but my hopes and dreams for him are not. Not only that but I have learned a very nasty lesson about humanity and our society. I could have done without that too.

So, anyway, I'm sorry I raised it so carelessly.

There were two or three different stages for me.
1). dh..( then dp..and having newly moved in with me and the boys) " arsenic.. Ds2 is far too quiet for an average baby".
2). ds2s year2 class teacher having a chat and in hindsight.. Was telling me gently something was up.. ( turns out his own younger brother had AS).

3. .. CAMHS who were supposed to be dealing with ds2 mental health issues.. saying " my ears are really pricking up and some of the things you are telling me.. Why not let's do an ASQ.. (pause).. It's a screening questionaire for ASC... ( pause and looked at me) .. do you know what that is?

That was the first time I heard autism as a word being related to ds... and I thought ... No way.. No way he is not like rainman.. What is she talking about!

And then I began to read!

Seriously, no, I was reading it with my Mum earlier today, while DD was at school. I was almost peeing myself laughing at my naivety genuinely.

Delighted.
I got his dx when he was 9, suspected for about a year.
I'd thought he was a possessed goblinspawn who would end up exorcized and incarcerated.
I was so pleased to find the key with a label, and that it fitted so well.

Well, it was over the space of about a week, when DD went from speaking clearly and seeming gifted and advanced, to slurring and not being able to say a word, and falling over a lot

I nearly cried with relief, it was one of the most wonderful days of my life. We were suspected of sexually abusing dd and I was terrified that there was something seriously wrong that would be neglected because the hospital had made their minds up and were refusing to do further tests.

denial at first, nursery must've been over reacting, he was only 2.0.
grief that the future i thought we had would be so much harder.
anger at the fact there seems so little support. so glad i found mumsnet as noone around me has gone through this.
relief in a way as kept being told it was down to my parenting and ds needed more discipline

Please God I don't mind a Downs child but I can't handle autism. Hmm, he's cute but this seems very very difficult... I'm a rubbish mum... It's because I work / have a toxic MIL/ delivered by forceps/ goes to childcare / not consistent enough / school are rubbish.... Oh no, it's just adhd... hang on, treatments only partly working. Must be my fault, clearly haven't grown out of my own ADHD yet, will have to work on that.... Funny, all the asd strategies work really well on my non-asd ds. Hmm, they work so well that he must have a few traits... oh, maybe I should ask the paed. Ah... That's what you and the psych thought all along... that'll be why you kept asking me 'irrelevant' social communication questions..... Oh well, it'll be mild and he'll be good at maths / physics one day. Anyway I'm probably imagining everything... Is it still munchausens if you're worried it might be munchausens?

And very recently.. He's doing ok, I wonder why? Oh shit... I've just realised I've spent the last nearly 7 years inventing and implementing my own intensive multidisciplinary-style evidence based ABA-type programme... Finally, an answer to why I've found standard mothering?

so complicated

I knew ds was nothing like his brothers or sister had been from his earliest days. I didn't think there was anything wrong though just thought my oldest three had been very easy babies and ds was a devil child.
He was about 15 months when I saw the NAS mathstick men poster on the internet and it was like a bolt shooting through me.He more or less matched every trait.
I saw the paed and went through his history and the paed asked what did I think was wrong.Just seeing him stimming and destroying the room was enough I think.I said autism and he said yes I do too. It wasn't a shock then I knew already.
With dd as a baby she was nothing like ds so I thought she was fine, I was convinced in fact. At twelve months she had a sudden and total regression and I knew immediately it was autism.We were referred to ds's paed who said we'll rule out Retts and metabolic disorders but I think you and I know it's most likely autism..
I took dd's dx in my stride thinking I can do this again.It hit me three years later when dd was unhappy at school and I grieved then for the little girl I thought I had had and lost.

First niggling feelings were when waiting of him to start speaking between the age of 18 and 2 y.
Felt a bit reassured when salt said "it's speech delay".
Then just before his 3rd b/day nursery started pointing out things with lack of interaction,...
When he was 3.4 and paed said the words "ASD" for the first time, it didn't make much sense and didn't sink in.

The full shock came when i started researching what ASD really is, and realising for myself that DS did indeed have many many traits and symptoms indicating ASD and it wasn't just 'simply a speech delay'.
I remember reading a book i got from the library 'the handbook of autism' and some of the descriptions in there could have been written about DS. I felt crushed.

Diagnosis of serious but (please please) manageable genetic condition-thank goodness maybe they will let us go home and end this nightmare, then slow panic at how I would ever keep her alive and healthy. Sort of a gradual thing but talking to others kept me going, I wanted to know nothing at first then suddenly needed to know every thing good and bad.

As for her delay/disorder/learning difficulties still have days when I feel I am imagining it -then Isee other children her age and know she is completely different. The real turning point though was a paed assessment this summer. She said to expect the report to say "profound s and l difficulties and she said we can't predict what will happen in the future. It was stuff I knew in a way but at the same time what a shock. The week after the report went on holiday with a friend with a child the same age (nt) and spent the whole week feeling sad for DD and a bit stupid-as if all my friends with nt children had been humouring me but all the while thinking poor used2b she is totally in denial.

I know something was not right since DS was a baby. When a brain scan confirmed it at 12months my first reaction was, I am going to work so hard with my boy, I will get him all the help he needs.

5 years on, I cannot help thinking what is his life going to be like when he grows into a teenager and adult. My biggest fear is of him being longely and excluded.

2 stages for me

1. When ds was a about 18 months ..."Maybe it's not normal to talk at 6 months and in sentences at 13 months with no baby talk at all.. and to know the names of every type and make of digger at 1....and to be so utterly rigid about everything.

TBh though i just kinda thought he was a bit clever and a bit quirky . He was incredibly hard work but i sort of just rode it out untill ...

1. When his little sister was about 4 or 5 months old (and he was 5). " OMG !she is looking for my reaction to that! she realises i have my own thoughts" ... or " OMG she is pointing for me to look at something...J never did that "

From that point on...it was literally about every week she would do something that i realised he had never done.

When I had DD, DS2 was 19 months and Non-verbal, no social interaction and scared to leave the house. When the HV came to visit DD I asked her about DS. She aid that she oudlnt be worried unless he was 2.

When he turned two and was exactly the same the HV referred him.

For me, the realisation was when I told Step-MIL (who is fantastic) that he had an appointment with the Paed. I thought she would poo-poo it and tell me I was mad, but infact she was glad because hse didnt know how to broach the subject of DS's behavior with me.

With DS1, for us, we'd struggled with his hyperactivity since he was born (he was a very distractible feeder, needed lots of stimulation or else would become fretful, etc) and his tantrums since he was about 18 months old. We went nowhere without DH while I was pregnant with DS2 because is could not handle him, alone. He stopped talking for about 2 weeks when DS2 was born and even though he was 2.5, we had to sit him in his highchair to be able to safely change DS2's nappy without him getting trampled. We muddled through and found ways of making life with DS1 work but it wasn't until he got to nursery and I thought "wow! they have no idea what they're letting themselves in for with DS1 having unfettered access to all this fragile stuff" that i began to realise how much we'd had to adapt. I'd already twigged to some extent and was working my way through the out of syn child at the time.

Anyway, at nursery, DS1 simply bounced off the walls and spoke to no one and was only calm playing in the sandpit, out in the cold, alone. After a few days, the teacher in charge of the foundation unit asked if he'd had any referrals or been seen by anyone about his difficulties and that prompted me to get straight onto our HV - we had a referral by his 3rd birthday. I still didn't even expect it to actually be autism until he got his diagnosis.

At the time we asked for DS1's referral, we were already worried about DS2's low tone and the fact that he was meeting milestones rather late. He was so different from DS1, though, that we were hopeful he'd not have any long term problems.

By 16 months, though, he still wasn't walking or talking and we realised at this point that something really was up. In addition, he was showing some real sensory difficulties and was usually up half the night. At 18 months, he started babbling. At 19 months, he was no longer babbling, had become extremely fussy about his food and was gagging on everything and instead of playing with toys appropriately, was just throwing everything around the room. By 21 months, he was finally walking, but very unstable and his sleep had improved somewhat and we had a referral - just over a year after DS1's.

By this point, we felt like it had been quite a rollercoaster with the 2 boys and there was no denial any more.

Day 5, dd2 readmitted via A&E to be rehydrated due to poor feeding.

Tube up her nose, lots of tests, referrals to more and more specialists in different hospitals.

Finally 18 months later met a Professor in GOSH who came up with a very long name for it.

With DS1 he was a very big baby - so when he was slow to get to milestones i thought it was just because he had more to move! I couldn't really remember what my excuse for speech was though, probably being a first born and a boy - they're slower etc. We knew he was bright, so we didn't have any worries. It was the HV that started the ball rolling with paediatrician, pre-school joined in with - i hate to rub it in - really good input and IEP at the age of 2.3. TBH i never noticed that there were just things he didn't/couldn't do - he was already a master at covering up. Dyspraxia dx was just a non event - not a surprise. Query still as to Aspergers, but i'm still not so sure. Like Used2bethin wrote - i have days when i feel i imagine that he's any different than other boys his age - then there are the other days! Biggest worry - bullying. It's always the ones that are just that bit different that make prime targets and he is very sensitive.
Just had a form to fill in for DS2. Paediatrician wants to 'check' - me and his teacher think there is nothing much. Reading the questions is a bit like OMG - him to a T, but then my instinct kicks in and I think no - he's just my DH in miniature.