Melinda

We had a DFG in 2008 to convert our loft as our twins (both ASD and severe learning disabilities) were sharing a bedroom and as a result waking each other up at night from 2-3 a.m. onwards. We also had central heating put in under the same DFG as we had to move to a property that was able to be converted which did not have heating, and soundproofing put in the bedrooms on the walls adjoining the nieghbours. The end result is great but I have a few words of caution..... The application can take a long time - it was over 2 years from the time our need was identified until the work was started. We went 2 winters with no heating as a result. If the cost of work exceeds the grant you have to pay the rest. We were not told the exact costing of the job (actually we were told it would not be a problem) until after we had moved to the property to be converted and ended up having to find £12500 on top. In the end some came from other grants, some from a charity and the rest a low cost loan scheme in place for such circumstances but it was incredibly stressful at the time. Having said all that, we now have the boys in separate bedrooms and it has made a profound difference to the quality of our lives. We had no problem with the grants department understanding that the boys autism meant we needed the work doing but did have comments made by the building inspector during the job.

Hi! I don't post here very often but am a regular lurker! I have twin boys aged 4 both of whom are autistic. Up until they started school in September their sleep pattern was fairly manageable (approx. 10p.m. - 6a.m. - not great but allowed me to sleep!). Recently they have dropped sleeping in the day and are now falling asleep between 7 and 8p.m. and then waking on average at 4a.m. ready to start the day. I have been trying to keep them up until 8 o'clock but they are so tired by this time it is often impossible! Has anyone got any suggestions on what I can do?! They are waking their sister up early too and when they do wake they bang in their room so I don't think we are very popular with the neighbours! I am going to bed at 9 most nights and I feel like I've got my days back and lost my evenings. This morning they were awake at 3.15 and it just seems to get worse the more I try and solve it. Melinda

We got houdini harnesses for our twin boys from our OT. They can't get out of them at all BUT the seatbelt does need to be worn over it aswell which our boys both mess with this from time to time. They are getting better since being at school though.

I am sat on the fence as far as the Son-rise program is concerned. I have read the book and last year attended Raun Kauffman's lecture. (Free!) I have also had the 25 minute phonecall! I was very impressed with both of these and pleasantly suprised that there were no claims of a cure. Instead, they were just extremely positive about my children for who they are. There is nothing amazingly different about the son-rise program's methods - just the amount of time put in and that they use a play room. (Though they were less prescriptive about the playroom than I thought they would be). I do think Raun Kauffman was autistic as a child, the descriptions of him are amazingly similar to my own children as are the photos of him. He appears not to be now. What no one will ever know is what progress he would have made if his parents hadn't embarked on the program they did. My reservations are about the costs and implications on family life. Personally, I would have not hestitated to start an intensive program based on son-rise techniques had I only had one child, but, I have twins both of whom are autistic and an older child to think about and I just didn't see it working!!! I seriously considered it when I was looking at special schools and was not happy with the one in our area. I think my main concerns about the costs are that it is a lot to pay out to learn the basic methods which are very similar to Hanen which I attended locally for free and that they insist you do the first course before the later ones. I have attended Intensive Interaction training through work and would say there are some similarities, although Intensive Interaction is based on work with adults who have missed out on early stages of development (as far as I remember, might be wrong!). Son-rise do run their courses over here now and a UK Charity (can't remember which offhand but you will find it on the son-rise site) was offering funding. I am not sure - like I said I am sat on the fence! I don't agree at all that it is the sort of program that forces children to do activities they don't want to do. It appeals to me precisely because it emphasises following the child's lead rather than imposing set tasks. I have used these techniques a lot with my own children (I can regularly be seen spinning round the living room!) and I do think they help to develop connections with very remote children which mine were. They are not now. Just because you put in a lot of time with a program it doesn't mean the child is being bullied into doing things they don't want to do. As I said, I don't do the program but I do use the methods and my children really enjoy people interacting with them like this. Oh.............I don't know!! I have reservations about the way courses are run but not with the actual program I suppose. Melinda

We have a designated parking space outside our house as we live in a terrace where all the parking is on the road. Does your social services department have an occupational therapist? Our occupational therapist sorted this out for us before my sons were 3. We had to apply for a blue badge before we were able to apply for the parking space and although they are not usually given until the child is 3, the OT rang them up and explained the situation and they were fine with it. We got the blue badges quickly but had to wait until the beginning of the financial year (a couple of months) for the parking space! My sons also both got mobility from aged 3. I really do understand how stressed you must be with the situation. I struggled up and down my street with my 2 autistic sons, their older sister and bags for a long time! Even now we have the space, people still park in it which drives me absolutely insane! I leave notes on their windscreens now as follows - "Please do not park in this DISABLED parking space, we have 2 disabled children who we need to get in and out of our house SAFELY"!!!!!!!! I have had many rows with people in the street as well. It is incredibly stressful and when you have an autistic child you have enough to deal with without that on top. I am pretty sure that the reason we got the space was because of the fact that we have 2 children with no road sense and live on a main road. I would have thought from what you have said that you have a similar case as us so keep nagging them! Good luck with it, Melinda

I don't know if this has been mentioned before, but a friend's NT son in the same position as yours was really helped by reflexology when all the other methods hadn't worked. I heard a programme on radio 4 about it too where health visitors were saying it was really working for a lot of children and some areas were adopting it as a standard treatment. I know the child I know was sorted within just a few visits. I am on the verge of taking my son as he has similar problems, although at the moment, I have used syrup of fig and lactulose which seem to help. The HV has told me to give him no more than a pint of milk a day. I don't want to cut this down any more as he has a very limited diet. I do give smoothies and a lot of fruit juice! Melinda

We are currently in the process of applying for the disabled facilities grant so our son's can have separate bedrooms. Our OT told us that they had expanded the criteria for the grant to include safety concerns to enable families like ours to get assistance. The OT has applied on the grounds that my son's both need very little sleep and wake each other up, sometimes very aggressively. We don't know if we've got it yet! You need to tell the OT everything! I have now decided to start writing down every disturbed night we get so I can point out actual incidents rather than speak in general terms. Melinda

My identical twin boys are both ASD. The first was born quickly but "easily", the second caused quite a few difficulties and ending up having a ventouse delivery. I don't think the ventouse was relevent to his autism as there are obviously some genetics ar work. However, I do strongly believe that it is a genetic tendancy triggered by something or somethings. I am really interested in pregnancy/birth issues surrounding autism because of the higher incidence in twins. I have often wondered if either scanning (multiple births have more scans as a rule, I lost count!) or epidurals (twin mums are often advised to have an epidural in case of complications) have an impact. Melinda

Denise - we are in the process of applying for the DFG! Our house cannot be extended or altered but apparently the grant can now be used to purchase a more suitable property, just waiting to hear if we've been accepted! Out of interest, how long did your grant take to sort out? We've also taken everything out of the room and painted magnolia - had to as one of my son's managed to push over his wardrobe!!!!!!!!!!! Luckilly it missed his brother!!!!!!!!!!!!! Melinda

Thanks Tez, that's really helpful. I will show it to her asap! Melinda

Does anyone have any more information about the slow-release melatonin? I asked our paediatrician about it recently and she said she hadn't heard of it. My sons (both ASD) are very bad sleepers and often wake around 2am for several hours!!!!!! They also take a while to settle but usually its one scenario or the other. They also share a bedroom so if one wakes they're both up! My feeling is that they just don't seem to need much sleep so would melatonin help or not?! Melinda

There is definately an increased risk of disability in twin pregnancies. It is considered high-risk due to the tendancy for twins to be born prematurely and the risk of twin-to-twin transfusion syndrome both of which can lead to disabilities. This doesn't explain how ASD is more likely to occur in twins even when none of the above factors are present i.e. a healthy full term pregnancy. Melinda

I have identical twin boys, both ASD. I know of 2 other sets of twins locally, one set both asd and the other set one AS, one NT. I think I read somewhere that twins are more likely to have ASD/AS than the general population and I have thought a lot about why this might be as it seems to be more than just the genetics of the situation. I had a very straightforward twin pregnancy. The only differences to when i was expecting my daughter was that I was scanned very frequently and advised to have an epidural which is standard for twin births. I definately believe that there IS a genetic element (hard not to in my sons' cases!) but I do wonder if either the scanning or epidural triggered something worse IYSWIM. (I do think too much sometimes though!) Melinda