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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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Original poster
BsDad · 09/06/2011 19:01

Thanks Toppy, I checked out 'George and Sam' and it's on its way to me via Amazon. Thank you for the kind words and for the suggestion.

autisticson.wordpress.com/2011/06/07/out-of-the-bunker/

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Original poster
BsDad · 12/06/2011 19:11

Just posted on the blog about a meeting with the school we had. I'd be interested to hear of any similar stories members might have.

autisticson.wordpress.com/

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geeandfeesmum · 12/06/2011 22:19

I've been following your Blog faithfully. You write so beautifully and every sentence is so real and full of emotion. You should really consider writing it all up together as a book. You are about a month ahead of us and our DD with regards to the school stuff and all of the emotional and administrative toil that one goes through. Your blog has been helping me to prepare for each little step. As parents it's hard to suddenly be in the dark about what is best for our children and we naturally trust authority because they should know more. It's good to see that you have been able to stay on top of things. Keep writing this wonderful blog. The entry about Disneyland Paris summed up exactly how I feel. Thank you.

SuburbanDream · 13/06/2011 11:09

Hi B's Dad, I've been following your blog too - the Disney diary was very well put. I've just read George and Sam and can really recommend it, hope you find it interesting. Another good read is "multicoloured mayhem" by Jacqui Jackson (she is the mother of Luke Jackson who wrote Freaks, Geeks and Aspergers and she has 4 boys on the spectrum). She also includes some of her diary entries after visiting Disneyland in the US - you might spot some similar experiences there!! Smile

Agnesdipesto · 13/06/2011 23:57

Well you have geared me up to have a meeting with school now!
You do sound like you are getting some wonderful support from services who I can only say failed us very badly.
The school should put in 1:1 that is necessary, they get a delegated budget for SEN (different LAs delegate different amounts) but certainly should be prepared to spend this on a dedicated 1:1 - in our area schools are told to pay for the first 20 hours 1:1 from the delegated resources and only if more than 20 hours are needed should they apply for a statement which tops up the 20 hours.
There should also be some exceptional funding they can access from the LA if they need full-time before the statement comes through

Even if he does need full-time support, that should not be a barrier to starting full-time - it would be discrimination for him to be treated differently. The funding is not your concern.

You can get advice from NAS Education line, IPSEA, SOSSEN if need be. PPS should tell you what the local policy for delegation is.

Original poster
BsDad · 14/06/2011 21:27

Agnesdipesto,
Thanks for the advice. The replies and comments we've had have strengthened our resolve over this matter. The more I think about it, the more I want him there full time from the off. I'm a teacher myself, so I guess a little part of me see things from their side of the table, but only a little. My wife loves your name, by the way.

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Agnesdipesto · 14/06/2011 22:20

You're welcome
I have also learnt that if you walk out of a meeting and change your mind thats ok. Sometimes I write after and say I know I agreed to x, but now I have had time to think about it actually I want Y.
You can't be expected to make all these decisions on the spot.

Original poster
BsDad · 18/06/2011 08:56

Fans of reading about my son's poo are invited to look at a new blog entry. We've had results back from the Sunderland test and are taking decisive action...

autisticson.wordpress.com/

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Original poster
BsDad · 19/06/2011 19:38

SuburbanDream,
On your advice I read 'George and Sam' this week. I have to say that it is probably the best book on the subject I have read. I would recommend it to anyone as a great starting point. I've bought a second copy and had it sent to my parents. Thanks so much for the tip!

autisticson.wordpress.com/

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KetchupQueen · 19/06/2011 20:20

Just a quick word for BSDad (I think your blog is great btw!) - by all means try a dairy-free diet - it certainly may help the poo's if nothing else - who knows until you try - but just be aware you will need to find alternative sources in particular of Calcium in his diet - very important for growing children. You would be wise to seek a referral to a paediatric dietitian to help you with this process - I used to be one of these in the NHS - and, whilst I would see no issue at all in trying this for your son - you do need to ensure he is still getting all the nutrients he needs. I saw several kids with diseases such as rickets due to restrictive diets during my time there. Good luck with it all - and I hope it makes a difference!!

Original poster
BsDad · 22/06/2011 08:15

Thanks KetchupQueen for this advice. Yeah, rickets would be bad. He's taken to 'rice dream' milk which has calcium but we do need further advice, as you suggest. He is due to see the doctor fairly soon.

autisticson.wordpress.com/

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Toppy · 22/06/2011 18:03

Good luck tomorrow A&BsDad - fingers crossed for you

Toppy · 22/06/2011 18:10

Oops - I meant to post a link to an article I think you will find interesting on the back of George & Sam (brilliant book huh ?)
I too wanted to know more about Charlotte Moore - she gave an update on life here

Original poster
BsDad · 24/06/2011 18:13

Toppy, I hang my head in shame for forgetting to thank you for being the first person who told me about 'George and Sam'! Thanks for the link to the follow up (what an incredible woman) and for the continued support.

The outcome of the visit to the paediatrician is on the blog...

autisticson.wordpress.com/

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Toppy · 24/06/2011 20:50

Absolutely no credit required here for G&S - just so glad you loved it as so far it is my favourite book on the subject. I really liked chapter 5 on the history of diagnosis explaining how the three stages of diagnosis came together. Despite extensive reading, I have never come across a clearer summary of the big names' work.

Really relieved to read your blog update. I am waiting for my 21 month old DD to be assessed in the autumn. Her brother is 3.5 and was diagnosed in Nov last year and I almost cannot bear that we might be treading the same path for a second time. Its just too much !

Marvellous reassurance for you all and BsMum's letter was a firm, clear line under any further concerns

Original poster
BsDad · 30/06/2011 21:54

A lot of the replies in this thread come from people a little further down the road than us. I wonder how many of you have experiences of Autism Outreach that are similar to ours...

autisticson.wordpress.com/

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Original poster
BsDad · 12/07/2011 19:46

The death of our family pet this week has got my thinking about the way in which my autistic son's mind works...

autisticson.wordpress.com/

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geeandfeesmum · 20/07/2011 08:28

Hi,

Just read your recent blog about the issues with school. Isn't it amazing that they always pick the past week of term to come up with problems!!

I was hoping to ask you something. Originally we had agreed to a phased entry into school as it seemed best for our DD. I just wondered why you are so sure that you don't want that for B? Please don't think I am questioning your judgement. The judgement I am questioning is my own to be honest.

Although it probably isn't relevant to our circumstances anymore as the school have refused to have her. She will be remaining at preschool until she gets her statement. We are only at the very beginning of the statementing process though. DD is 4 in August so she is still very young.

Thanks. I'd love to hear your thoughts on this if you can spare the time.

Original poster
BsDad · 20/07/2011 21:04

Hi,
Thanks for reading. Our son is also 4 in August. It's so young to be sending them, autistic or not, isn't it?
We strongly feel that a phased start would be unsettling for our son, and that he will cope with full time. He needs structure and order and familiarity. A phased start followed by a change in his school day would not be helpful to him and could be counter productive. We expect he will quickly learn his routine and come to expect it. It's when things start changing or not meeting his expectations that the problems can occur.
I also believe in his right to inclusion. I think all children should have the same opportunities. It's just that some need a little more (or a lot more!) help achieving it.
With my son's communication and social difficulties I think he needs to spend more time around 'normal' children, not less. If he is part time, that immediately sets him apart and will make integration more difficult.
At his current nursery there is a big emphasis on 'free play'. This does not suit him. He tends to flit from activity to activity without ever really engaging. We hope a more structured approach in school will suit him, even in reception.
Autism Outreach strongly felt he should go in full time. They have produced three booklets- social stories- for his induction days and they worked well.
Your daughter's situation is interesting to read about. I didn't know a school could refuse a child. I'd be interested to hear more.
Thanks for posting. It's good to hear from others and be able to share experiences.

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Muchroom · 03/08/2011 08:25

BsDad,
Just checked out your blog- great stuff! I think your families struggle to 'get' it are familiar to alot of people in that situation. They're trying to be strong for you, your child and cope with it themselves. It's difficult, I think.
Keep posting. I'll be following.

Original poster
BsDad · 14/08/2011 22:20

Thanks Muchroom. A thread similar to my post is currently on this forum and you're right in saying that it's difficult for them, trying to be strong for everyone.
I've just put a new post on my blog:

autisticson.wordpress.com/

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Original poster
BsDad · 23/08/2011 22:06

I thought I'd share here the news that we have just had a proposed statement of 32.5 hours p/w for my son. Understandably, we're very pleased with this. It has been a very intense six months going from diagnosis to statement. Mumsnet has been key a key aspect of us getting to this stage.

On my blog I have posted the supporting comments that we wrote in support of the statementing process. There's lots of it! It is my hope that this may prove useful for anyone on the 'road to statementing' that we've been on.

autisticson.wordpress.com/

Thanks.

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coff33pot · 23/08/2011 23:40

I am so glad for your DS and you that you have got all those hours Grin

Thanks for sharing the blog and your supporting documents. At least now you can be rest assured that your DS is going to have a good start in school life Smile

AlysWho · 24/08/2011 09:36

Well done!! looks like your work and determination have paid off, the extracts appear to suggest a thorough statement to me. I'm inpressed you are managing to stay so clear headed so early on in the game, IYKWIM. as you say having a child with such a high level of needs is such a shock and such a lot to take in. I was an emotional mess when my DD was that age!! She too was(is) a case of an obvious need and has always had specialist placements and 1:1, so her statements were fairly straight forward at the stage you're at. Also- lucky you having such fabulous support from PP- ours is non existent here!x

Oblomov · 24/08/2011 18:35

Sorry, where are the problems thta you encountered with Outreach. Which subtitle is it under, please ?