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Here are some suggested organisations that offer expert advice on special needs.

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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Original poster
BsDad · 24/08/2011 19:21

Autism Outreach have been brilliant from the moment they first contacted us, so no problems there. There is a post on this subject, if that's what you're looking for. Thanks.

autisticson.wordpress.com/2011/06/30/reaching-out/

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Original poster
BsDad · 30/08/2011 14:55

What we thought would be a routine follow-up appointment with the paediatrician this week has left us reeling. We got feedback from our son's MRI scan...

autisticson.wordpress.com/

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sickofsocalledexperts · 30/08/2011 15:25

I read your latest blog post and can see how worrying this is, especially the uncertainty. A friend of mine had a similar situation after an MRI scan but in the end they told her that the abnormality was just "minor scarring" on the brain due to difficult birth episode and that it might mean mild learning difficulties for her boy, no more. She came away mightily relieved. Of course I don't know what your outcome will be , but I thought maybe it would help to know that there are some less-terrible outcomes possible too. And in a way, knowing more about why your son is how he is, may expose you to more hope of treatments/solutions down the line? I think that we are only in the foothills of brain treatments now, but in the next 10 years there will probably be huge advances. All the research into Parkinson's and Alzheimers (myelin connections, proteins etc)lgives me hope in a way. Anyway, if none of that helps, just to say my thoughts are with you and I found your post moving and v well written.

smugtandemfeeder · 30/08/2011 16:01

Just read your latest entry. I cannot begin to imagine how you must be feeling right now but as I have been following your story from the start I feel very very sad. You may not have all the answers and it must be a real emotional shock when the problem you thought you were dealing with changes so suddenly, without any warning.

I have always had concerns about my DS as he had a very bad head injury at birth. The NHS have always refused to give us an MRI scan even when pushed. "I'll order a copy of your birth notes" (this was 6 months ago.......) This has spurred me on to fight to make sure one of our damn doctors lets him have an MRI scan.

I cant think of what else to say to you but you and your wife sound like very strong people and I wish you the best with the next part of your journey.

Original poster
BsDad · 31/08/2011 08:25

Thanks for those words of support and advice. I'm finding some (slight) peace of mind in the fact that he is making progress and developing, albeit at his own pace. We're not dealing with regression or anything like that. People with a better perspective on it than me ( ie everyone else) tell me how much he's come on since they last saw him. We're moving in the right direction!

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Original poster
BsDad · 04/09/2011 20:54

Our son starts school in two days time. I doubt there is a parent in the country, in this situation, who is not feeling anxious. Here's my take on it:

autisticson.wordpress.com/

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Agnesdipesto · 04/09/2011 22:15

Good luck! I think its amazing that your outreach team are going in for 2 weeks and you got your statement so smoothly. Could not be more different from our experience.
There can be advantages to having a cautious school. Many LAs put alot of pressure on schools to say they can cope and meet need (because money to do so has been delegated to them) so schools feel forced to say they can do it when they clearly can't and then cover up lack of progress. A school that recognises its limits is useful (as long as they have a positive attitude) as there is then more chance they will support you in requesting a lot of ongoing outside expert support.
In reality few mainstream teachers have been shown properly how to work with, engage and teach an autistic child, let alone set and devise programmes. Thats why I think there should be autism specialists going in very regularly. Before we had ABA we tried to take the line of not criticising the nursery but saying, this is beyond your expertise and we don't expect you to know how to do this so lets agree we need to get in someone who does.

Original poster
BsDad · 05/09/2011 17:11

Thanks Agnes. Autism Outreach reassured us a little on the phone today and helped us feel that it is better to go into mainstream and try and make it work. I like what you have written about a school recognising its limits. I hope we can have an open and honest relationship with the school about all this.

Any tips on how to sleep well tonight ahead of the first day of school?!!

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Original poster
BsDad · 11/09/2011 08:51

One week of school down! Only twelve more years to go! I hope everyone out there on this forum with reception age kids has had a good week. Here's our first week:

autisticson.wordpress.com/

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Original poster
BsDad · 18/09/2011 19:47

This week the school will shortlist the applicants for the post of my son's TA. I really want to vet, interview and scrutinise them myself, but instead I've just blogged about it...

autisticson.wordpress.com/

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keepingthefaith · 18/09/2011 22:15

BsDad Just read your latest blog, thank you for sharing your experiences with us.

I can relate to what you are presently going through. My DS (poss 22q deletion syndrome and poss ASD), now in second year in learning support base of primary school, had the best TA he could ever have last year and understood everything about him (she has DS). He came on leaps and bounds because she knew him inside out. She has since been deployed, thanks to government cutbacks, and now my son is floundering.

I also volunteer in my local special needs school (mainly autistic) and now know that it takes a special kind of person to work in this important position.
I also know that the people who work in this school mainly have SN children of their own and endeavour to bring out the best in every single child there.

I am sure that whoever will eventually be assigned to help your son will not just be there for the money.

Original poster
BsDad · 19/09/2011 18:03

Thanks keepingthefaith,
Here's hoping he gets support from someone like yourself or the people you work with at the school!

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Original poster
BsDad · 25/09/2011 18:52

Looking through some old photos got me thinking about my son's eye contact this week...

autisticson.wordpress.com/

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Muchroom · 27/09/2011 12:13

BsDad, your right not to beat yourself up about eye contact. There are some good threads on here on that subject- have you checked them out?

Original poster
BsDad · 02/10/2011 10:36

Muchroom,
I did look on here! I actually meant to add a link on the post about eye contact- a thread that has some really good stuff is here:

www.mumsnet.com/Talk/special_needs/718713-Eye-Contact

My son's TA was appointed this week:

autisticson.wordpress.com/

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Original poster
BsDad · 08/10/2011 18:48

Thinking I could do the experts job for them, I decided to write a social story for my son. When it did more harm than good, I decided I'd better read up on them a bit. I've blogged about it here:

autisticson.wordpress.com/

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Original poster
BsDad · 15/10/2011 09:15

I'd like to share a letter I wrote in support of an application for a blue badge, in the hope that it may be of use to others. My son did not automatically qualify via dla for disabled parking allowance but I applied anyway. Here's what happened:

autisticson.wordpress.com/

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richmond44 · 15/10/2011 18:34

BsDad
Just started reading your Blog and I think its very helpful. DS who is 3 1/2 just been diagnosed with ASD and I am finding it hard to take on board so reading an account of someone who has been through it has helped. I will try and get my husband to take a look - in fact he is coping better than me (or seems to be). We wll be applying for a statement over the next couple of months so will also read your account with interest. I do not know what DLA is (as mentioned in your last post) or how it relates to parking but will no doubt find out with more research!
Thanks for sharing information on your family.
Richmond

Original poster
BsDad · 16/10/2011 08:24

richmond44,
Thanks for reading, and good luck with the statement. We also found/are finding it a difficult thing to take on board. I cope by knowing that I'm trying to do something, whether it be pushing for the statement (who have you got supporting you with this?) or applying for Disability Living Allowance (worth looking into- you family may well qualify). All the best.
B's Dad

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suburbandream · 16/10/2011 13:38

Hi BsDad, I haven't read your blog for a while, but I saw this and had another look. I'm so glad you got the blue badge, although I understand it is a bittersweet victory. But well done for highlighting this, like most people I suppose, I had always assumed you would only be eligible if there was an obvious physical disability. I found the social stories bit interesting too - I think I also used them in the wrong way, for things my DS2 couldn't or wouldn't do, which is probably why they didn't prove very successful for me either. Thanks for sharing your experiences Smile

Original poster
BsDad · 22/10/2011 10:51

It's been a year since it was first suggested our son might be autistic. I've posted about it on my blog but what I didn't mention was that, without the support we've had from this forum, life would have been a great deal more difficult. My wife posts on here lots and reads many threads that have helped us help our son. So thanks.

autisticson.wordpress.com/

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emrob80 · 23/10/2011 05:33

Just read your post and found it very moving. I think your probably doing much better than you give yourself credit for. Well done for getting through the last year x

AgnesDiPesto · 23/10/2011 12:35

I am amazed at what you have achieved in a year. We still have not achieved some of the things on your list eg blue badge. I also have to say I don't know where you live but you are incredibly lucky we have had nothing but lack of support from outreach and refusals / delays in statementing and I am now facing my third tribunal and my child is still 4! There was a point I actually did not believe your blog was real as your experience seemed to be so so different from what we experienced and you seemed to be negotiating every hurdle so effortlessly. You should both be really proud you have done a fantastic job.

Original poster
BsDad · 29/10/2011 09:25

Ah Agnes, I wish I was making it up! The differences in provision between authorities still amazes me. I accept that provision is driven by budgets first and foremost but some of the stories I've heard make me wonder how they get away with it.
We appreciate how fortunate we are where we live. It's all happened so fast! I have trouble keeping up sometimes. We're still learning to understand our son's needs as well as dealing with all the provision and appointments etc. I've wriiten this week about making sense of it all:

autisticson.wordpress.com/

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Original poster
BsDad · 05/11/2011 18:03

As new as I am to life with an autistic son, I've experienced how frequently the 'invisible' nature of the condition can make it difficult for people to understand. I've written about this in my blog and included an intersting link on the subject. Thanks also to everyone who has clicked on the 'Featured Blogger' link to my site this week. Your interest is greatly appreciated.

autisticson.wordpress.com/

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