Lynden

We first had concerns when L was about 10 months old. He was really floppy - he could sit, but not properly and he wasn't crawling etc. He wasn't babbling at all and didn't really respond appropriately to his name. He also did a lot of rocking and flapping, as well as headbanging. He showed no interest in toys that didn't spin or flash. We did think autism but dismissed it because he did give eye contact to us (didn't know the difference between eye contact and appropriate eye contact then). He couldn't deal with solid food, messy hands, and he didn't mouth toys at all. The HV I saw told me I was being ridiculous and was comparing him to his sister who was quite advanced in her speech etc (he was a second child and a boy). We moved back up beside my parents when he was 13 months and I saw the HV there and she thought I was right to be concerned. At 15 months we saw the Paed and he was referred for SALT, physio and OT and at 2 years and 2 months we got his formal diagnosis of autism, global developmental delay, hypotonia and hypermobile joints. He was young, but there was no question about his diagnosis and hasn't been since. He obviously has the co-morbid conditions so didn't walk till he was over 3, didn't talk till he was 6.5, still in nappies at 8.5 etc. Lynne

We've only ever had positive experiences with social services too. We saw one social worker briefly to set up respite when we lived in Scotland and she was lovely. We moved to England shortly after, and again saw our social worker to set up respite and to help us settle in the Borough. She was lovely too and we've only ever found them supportive so far.

I use facebook and enjoy it. My husbands family live in the US, my family are in Scotland. I have childhood friends, university friends, friends from when I lived in different places and it allows us to keep in touch and more importantly for both our families it allows them to see up to date photos of the kids etc seeing as they miss them not living close by. I don't add anyone I don't know. I think it only becomes an issue if you use it instead of real socialising. I still go out for dinner with friends, I still call my family on the phone etc. It's a nice way of keeping in touch with multiple people, but it doesn't replace proper contact for me at least.

I went last year as a parent and as a professional supporting parents. I found it interesting but in terms of information there wasn't a huge amount there that you couldn't find with google - it was handy to have it all under one roof but it wasn't quite what I was expecting - not sure if I'll be there this year or not. Lynne

My sons SLD primary school is converting in the next few months. They are bringing in the feeder SLD high school with the aim of providing the same outstanding provision they do in my sons school from 3-18. I completely trust the management that will be leading the academy and know that their focus is the children. It wont affect our childrens placements at all, they still continue to be funded by the LA and costs wont change. The LA will continue to provide transport for the children in the school. Contrary to popular belief, the schools will not be substantially better off financially so money isn't a motivating factor in the decision to move (am on the board of Governors). Lynne

I'm glad you feel so positively about your AS - but whilst it may be a gift for you, it can be very disabling for some people and I'm not sure they would agree with you that it is a gift. Not everyone with AS has supreme intelligence, nor a photographic memory. These are skills that you have, as an individual and it's great for you that you have been able to cultivate your skills but it's important that you appreciate that all people with autism are individuals and as such will feel differently as to how their autism affects them. Lynne

I couldn't agree more!

I'm glad it went as expected Tally - you sound like you coped really well. Enjoy your day tomorrow and safe travels home. Lynne x

I used to do a lot of crafts - I have a lot less time now. I used to crochet, cross stitch, paint ceramics and machine embroider. I did turn the machine sewing into a business for a few years but L only sleeping 4 hours per night and the business taking off meant I couldn't keep up and had to let it go! Was fun at the time and I don't regret it now Lynne

I think you are right in that the forum probably doesn't give a balanced view of ASD to the lay person. However, it's an advice forum, and generally, people post when things are rough, and not so much when things are going well. I'm uncomfortable with the generalisation that there is no self-reflection in the parent group on forum. I think many are questioning how they parent on a daily basis and looking for ways they could be doing things differently. I know that personally, I am constantly evaluating my own parenting strategies, weaknesses and strengths in order that I can help my son in the best way possible. There have been many many posts asking for parenting advice in the time I've been using the forums. I also think how a person parents depends on the difficulties their child has, and their support network. Lynne

My son has an ipad. My hubby is a gadget geek and L inherited his first iPad when he upgraded to his second. We have found it a fantastic tool. He watches a lot of trains and The Wiggles on youtube But he also plays really well with lots of the apps - he has matching ones, jigsaws, spelling apps etc. Duck Duck Moose do some fantastic ones. He has hypotonia and hypermobile joints as well as autism and severe learning difficulties. He doesn't have the fine motor skills or strength to write, or use a mouse, and struggles with the white boards in school but because the ipad is so sensitive he can use it really well. He loves the little spelling apps where he can pull the letters to spell the words etc. We've found it to be well worth the money. Lynne

Oooh how exciting! Well done you Lynne x

Transition stuff is very important - we do a transition to high school workshop but we don't do transition to adult services, at least not formally. Maybe something we could look at. That's useful Trekster - particularly as we increase services - will make sure any names are inclusive. Completely OT but how are you finding the course? (you are doing the B'Ham autism course as well as me if I remember correctly).

Well at present the support we offer directly to children/adolescents is aimed at the higher functioning side of things. I would like to be able to provide more for the lower functioning end but at present we do not have funding or staff to do so (it's a gap I'd like to see addressed as my son would fit in that category and I think there's sometimes an assumption that a SEN school will cover all the bases but often it doesn't). We don't as a rule offer academic support but we have helped universities set up student support groups. We also don't provide educational advice as such - we can provide general advice on IEPs, statements, transition etc but our sister charity has an advocacy service which can help with out of school tuition, getting kids back into school/the right school/tribunals etc. We don't have computers other than for staff use as we don't have the funds to provide them and aren't likely to have any time soon. Good questions though. Lynne

What would your ideal autism support group provide in terms of support to parents, and to kids. I currently work as a project manager for a local charity (we support families affected by adhd and autism) and have my own ideas about where I would like to see us provide more support, although I think we offer a pretty decent service. Currently we hold two coffee morning support groups per week for parents/carers. We offer one to ones in terms of advice and form filling (DLA). We offer family counselling (with an counsellor who has 20+ years of ASD experience. (she also offers counselling to individuals with asd). We offer parenting courses which provide info on the conditions and practical behaviour management strategies (evidence based courses). We offer one off workshops where we have specialists come in and talk about puberty, behaviour management, communication etc. We have just renewed funding to provide a teen course to help with anger management, understanding emotions, social skills etc. We have a lending library. We offer drama therapy, a young adults film group and an adult adhd support group. I should say we currently primarily support up to 18, sometimes 25, as there is an adult autism service locally too. We don't offer after school clubs / playschemes etc as there is a sister charity that does that. Obviously we are hugely limited by funding - but I just wondered in an ideal world - what would people want? Lynne

I'm not sure that you can just buy piedro boots on the internet? I think they have to be specially fitted by the orthotics department at hospital. I know my son can't even get a bigger size without being seen by orthotics and his physiotherapist to make sure that the fit is correct. Lynne

Yeah, AR in Peterhead was one of our options. He went to the SEN unit in Banff, but I think he would have ended up in Westfields or AR had we stayed there as his learning difficulties were quite severe at that time (prob classed moderate now). 6 Primary 1's seems massive! That's bigger than the schools we have here in London! The majority of mainstream round us here have three classes. The one my daughter is in initially only had 2 which is why I sent her there as our village school at home only had 80 kids in the whole school let alone her having to deal with 80 kids in P1 and she is NT lol! Lynne x

Merry Christmas all. We had a relatively chilled day yesterday. L has been counting down to Christmas for around 6 months He was a tad disappointed that the Santa wasn't here yesterday morning. He was funny though, manic opening half of his presents and then he'd decided he had enough and took himself off with his blanket and ipad for a half hour then came back to life when it was time for his Dad and I to open our gifts haha. He coped really well though and we had a nice day all in all. Lynne

I think the difficulty is the lack of provision in the area - it's been 5 years since we moved, and I never looked at what was actually available in Aberdeen itself but our choices were really limited when we lived there and I don't think any of them would have suited L perfectly either. Where exactly are you Lynda - I think I asked you that before but I can't remember. I do have friends with autistic kids back home at different schools in the area. Lynne x

It's difficult to say and you know your child best. Whilst we lived up north, L went to a SEN nursery attached to a mainstream primary and whilst it was fine and suited him then, I can see now that he wouldn't have made half the progress that he has done in his current special needs school. I'd agree with Justine in that I think it's more about the expertise of the staff, than the size of the school. Even in a bigger school, if the staff have knowledge of autism then they should be able to manage break times for your little one. Lynne

I'm undecided on this one. L really struggles with social events - he gets unbelievably anxious and because he is very sound sensitive he finds it quite distressing. But, there are times where he will have to tolerate it to an extent so we try to find a happy medium. If we do go out we will try and find somewhere that will suit him, so a restaurant with a window onto a road for example so he can lose himself watching cars. We have my sisters wedding next year, which is going to be incredibly difficult for him for so many reasons, new people, completely new place, noise, different clothes etc etc. We are going to have a back up plan where his respite carer will come with us so that he can dip in and out of the day as much as he can tolerate, and the rest of us can still enjoy parts of the day too. Butterfly73 I think it's a bit of a generalisation to say that usually kids with autism have a keen sense of what one ought to do, and feel a great need to comply/conform as far as they can. I think that hugely depends on the child, and on their level of functioning too. My son for example, has no concept that he is different from anyone else, and no desire to conform to any socially acceptable norm. I think it's fair to say a big majority of the autistic kids I know would be similar, but many would be considered lower functioning or classically autistic. We do try and teach L, and gently increase his tolerance of social situations and it's working so now we can go out, but by the same note if he has been having a really difficult day, we wouldn't then expect him to be able to go out to a social function which would just end up being too much. Lynne

I'm sorry to hear that Sally. My Mum had a bleed age 46 (15 years ago tomorrow actually - I walked in from a Uni night out and saw it all happen in front of me) and it was exactly the same. She was really fit and there was no underlying cause or condition - it was fluke :/ She was 7 stones, taught full time, spoke 4 languages etc etc. She lost her right side completely, and lost all language and was in hospital for 3 months and a rehab facility for a futher 4 months, then had ongoing rehab at home. 15 years on and she's doing well, but life is very different - she independent at home, but developed epilepsy so can't drive so is stuck at home a lot. She never regained any of her other languages, only english. She can hold a conversation easily but loses words sometimes, or struggles in a larger group. I'm sorry you are having to go through this so close to Christmas and I hope they find out the cause and his recovery is quick. Lynne x

I agree with Bid - awkward though it may be for people around them, technically she is an adult and even if she weren't, her parents seem to approve. I'm not sure you saying anything would make any difference to them but it might make put a strain on your relationship with your boss. Lynne

I think it depends on where you live. The borough I work in does have an adult aspergers support group but I'm aware that not many areas do. Lynne

I look forward to it - issue 1 was fab. I will try and do something for you at some point - not sure it'll be any good though haha.