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Original poster

Life with an autistic son

114 replies

BsDad · 26/03/2011 15:01

Hi,

I'd like to invite Mumsnet members to read a blog I am writing about my son, aged 3, who has just had a diagnosis of autism.

My wife is a regular poster on Mumsnet and it has been an invaluable source of advice and comfort. I'm not sure there's even a Dadsnet, so I thought I'd post here.

I've been writing the blog for a while now, more for myself than anything else. I've just made it public, as I thought there might be things on there that are worth sharing, particularly for parent's who find themselves right at the very start of the experience of having a child with ASD.

I'd welcome any comments and feedback via here or the blog. Thanks.

autisticson.wordpress.com/

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sickofsocalledexperts · 26/03/2011 15:25

It's good, I just read it! I think it's good also to have a dad writing a blog - there are hundreds of mom-blogs around already. My autistic boy is now 5, but I well remember the early days just around diagnosis, which you describe f factually and movingly.

EllenJane1 · 26/03/2011 15:47

Hi BsDad. I've just read your blog and wanted to say how familiar it all seemed. Especially the part when you actually received your DX and despite wanting it and expecting it, it still floored you. That last secret hope extinguished.

It does take time to come to terms with and I know it's a cliche but your DS has not changed because of this DX. He is the same this month as last month. But now you have more knowledge and ammunition on your side to help him.

We read up everything we could get our hands on when DS was 3 and went on an Earlybird course run by the NAS when he was 3.5. He didn't get a statement until he was in Y1 but he has coped well in MS school. (now in Y6 and ready for the next big challenge)

Keep fighting for him, it's worth it!

Original poster
BsDad · 26/03/2011 15:53

Thanks- it's so nice to get feedback, and so quickly. Please spread the word about my blog. Thanks for your words of support.

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amberlight · 26/03/2011 17:30

Hi BSDad - good blog. I'm on the autism spectrum, a mum and an adviser on autism (well, a 'live example' of it - I talk to people about what it's like and they get to see what I react like, really!). Yup, it's a heck of a shock to get the official 'stamp', even if people expect it. The knack is to realise that there are huge strengths to most of us. Working towards those and using those are one big secret to contentment in the future. But the big thing is getting us to learn social skills as best as we an. Hard work, and we'll never be world class at them, but it's the one thing that truly makes a difference. We can have the highest IQ in the known world, but if we can't get one person to take any notice of our efforts, it's all wasted.

Original poster
BsDad · 26/03/2011 20:01

Thanks amberlight. We seem to spend so much time explaining to people (teachers, doctors, helpers etc) what he can't do that it's easy to lose focus of the fact that, actually, he's brilliant. Your post helps me remember that.

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Ruuger · 28/03/2011 22:08

Hi Bs dad, I've just read your blog and wanted to say I'm so glad you're writing it :-). My son was diagnosed at 22 months, he's now 2.5months. Although he is not as advanced as your little boy, he has no language or form of communicating other than grabbing any available hand to direct where it may be needed, they do share quite a few of the same habits, the 'hand in the nappy' being the main one :-). I've tried a couple of support groups,but parents there had much older children, while it was good to chat and have the understanding i just don't get from family members, i really wanted to talk with people who are where i am now, at home with a toddler and at the beginning of the biggest and most unexpected learning curve.
There must be hundreds a boys just like mine....but where are they?????? So again, I'm so pleased to have found your blog, it was lovely to read.

Original poster
BsDad · 31/03/2011 20:26

Thanks everyone for taking the time to read my blog. I have just added a post, regarding the process of getting a statement for our son. I'd welcome your comments!

autisticson.wordpress.com/

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Toppy · 02/04/2011 23:02

Hi B'sDad - I bookmarked your blog last week and have finally had the time to read it tonight. I think it is fantastically honest and as I am in almost exactly the same situation as you (got a diagnosis in Nov for DS, now 3) I was very grateful for that honesty - it made me feel less alone. You will also have a remarkable record of your 'journey' (bleurgh I HATE that reality show phrase but it is appropriate here) of your life with B & his autism.

Your last post is bothering me - I cannot bear it when I hear that a SEN team involved with a child with autism has a 'wait and see' approach. Our equivalent wanted to do this too but as soon as we got a diagnosis I knew I was going to take matters into my own hands. I am so glad I did and I think you should too. I know this can be really difficult in some LEAs. We attend a private autism specialist nursery 45 mins drive out of London and I have met many other mothers in the same boat as myself but from different LEAs. One London Borough has a SEN 'gatekeeper' and the families from this borough are all losing precious months waiting for Requests to be submitted. They have to sit and watch other mothers who initiated Statementing at the same time as them and end up with a final statement whilst the Gatekeeper still has not processed their Request. Its very difficult when you are so new to diagnosis and naive of the whole system to challenge such practices. But you must. Do it yourself B'sDad - retain control. All that admin, red tape, lack of urgency, waiting and seeing that you have experienced so far will just continue if you don't. If you do it yourself you will feel empowered and in control which is so important at a time in you life when things feel very out of your control and you will look back and know you have done everything that you could.

Print off the Code of Practise, get your highlighter pen out and settle in for a couple of hours. Then do an advanced search on mumsnet for 'Request Statutory Assessment' in title and read all the fantastic advice there is here in the archives.

And keep writing - I will be reading

Original poster
BsDad · 03/04/2011 05:46

Toppy, thank you so much for your advice. To get such useful help and support means a great deal. It's horrible to think we have been thrown into some sort of fight with the 'system' but fight we will. I will definitely be acting on your advice. A letter will be drafted this weekend and, as I think I said in the blog, the primary school are going to help with the process.

It's good to know there are peolple like yourself out there. Your DS clearly has a good team on his side! Thanks for taking the time to read the blog.

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TheJollyPirate · 03/04/2011 06:41

Excellent blog BsDad, I am the Mum of an 8 year old DS who is autistic - he was only diagnosed a year ago and I can well remember the weeks of numbness which followed. I write a blog too which helps at times.

I'd suggest asking for a SA yourself for B, I did this for my DS (prior to diagnosis) and they turned me down flat. However, once they had a piece of paper with ASD written on it they were falling over themselves to do a SA and he now has the elusive Statement. You are starting off with the diagnosis in hand - I don't see how they can refuse a SA to be honest.

Jennylee · 03/04/2011 13:19

I will checking out your blog we recently had our hope extinguished

Original poster
BsDad · 07/04/2011 17:02

Hi,

I've just added an entry to my blog. Thanks to all those of you who have taken the time to read it and make comments.

autisticson.wordpress.com/

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coff33pot · 07/04/2011 17:10

This is a great blog BsDad Smile

smallwhitecat · 07/04/2011 21:18

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Original poster
BsDad · 07/04/2011 21:38

Thanks smallwhitecat. You've put a smile on my face! We've actually had a bit of a breakthrough. We contacted SEYS to inform them that if they weren't going to act, we would. The next day they relented and will now be starting the process. So yes, kicking and screaming has (so far) paid off. Thanks for your support.

autisticson.wordpress.com/

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Toppy · 07/04/2011 21:49

Hurray for Bsdad - kick ass !

smallwhitecat · 07/04/2011 22:15

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Original poster
BsDad · 09/04/2011 08:44

Thanks. We're getting better at being pushy parents. We're very lucky in that we have access to some good advice via our workplaces (and of course the excellent advice from mumsnet forum members). What do parents do when they don't know the system, don't have access to advice and are inclined to trust the authorities? I think most people would, understandably, feel quite intimidated to 'challenge' those services. How many children go undiagnosed or unsupported?

Anyway, that's enough grumbling for a Saturday morning! I've posted on the blog about this week's good news.

autisticson.wordpress.com/

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SanctiMoanyArse · 10/04/2011 14:15

SWC is sadly right; our situation is that we have ds1 with Asperger's, DS3 with sutism, ds2 has dyspraxia and we think ADD (school say yes but won;t refer), ds4 was referred last week as failed developmental assessment and has quite amrked echolalia at three so well yes- I am also 2/3 way through a PT MA in Autism and help out at an SN Base (I'd like to teach SEN).

I don't necessarily think you have to be a nightmare- IMW it is as important to be nice as to play hard ball: the nightmare SENCO got a formal complaint, the great parent partnership guy an email saying how great he was to his Manager. You do have to toughen up though: ds1 has a aplce at an AS school for comp and was one of 2 in almost 40 applicants to be offered: previously I'd have got upset or even refused in case another child needed it more but had a less well informed Mum: now, I take the offer andd gladly say thank you (with just a sniff for those kids who didn't get in- am focussed not heartless!).

Thing is though, ds1 has been diagnosed for 5 years now, I know the system. That takes time IMO and you know- I have gained far more from chatting on MN, meeting people on courses and parents at Sn groups (Sn rugby here) than any professional has offered me. Networking seems to be all in ASD.

I will try and read your blog soon; you will understand that having ds4 referred is raw and I am avoiding upsetting myself for a few days after a mini breakdown yesterday! I will try and come back to it though and wish you luck.

smallwhitecat · 10/04/2011 22:00

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SanctiMoanyArse · 10/04/2011 22:11

Ah tis how it falls SWC (as you know that is not how I really feel but it's not a choice thing is it?)

Thanks.

smallwhitecat · 10/04/2011 22:21

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SanctiMoanyArse · 11/04/2011 14:05

I think for ds3 i;d feel as you about the choice; for ds1 I would feel differntly though- I think becuase ds3 is happy, settled, just him whereas ds1 has a lot of capabilties and ambitions which I could see being thwarted by teh ASD and him becoming miserable as a result.

I'd far rather neither had ever developed any issues and it hadn;t been a consideration at all, but they vary in terms of the rest of it.

DS4- well who knows?

Original poster
BsDad · 13/04/2011 15:31

Smallwhitecat, Sancti, Toppy and others- it has been fascinating and enlightening to read your discussions.

A new post is on my blog, for those who are following it.

I hope that using this forum to announce new entries is not regarded as inappropriate. Another forum were a little snotty about me using it as a way of notifying people. They feel my contribution is not a two way thing. I hope that's not the case here. I read many of the threads on here, as does my wife who is a regular poster.

Sharing the blog with forum members is done with the best intentions!

autisticson.wordpress.com/

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Original poster
BsDad · 17/04/2011 10:57

My son has an MRI scan appointment this week. I have buried my head in the sand regarding this, because the doctor would not really tell us anything. It's probably a good idea to avoid filling my head with too many ideas ahead of it, but it's a cause of great anxiety at the moment.

Full details are on the blog:

www.autisticson.wordpress.com/

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