shamu

Apologies for coming in with another question - only 3 months post diagnosis so I don't feel I have many answers for people.... Basically, DS (age 3) currently goes to a childminder for 2 days a week although I'm on maternity leave. Before he regressed/was diagnosed we'd planned to leave him with her until we moved but due to his diagnosis we delayed moving and I've just told work I'm taking some sick leave..... However, we are going to be moving around Easter (hopefully) and I'm getting myself in a tizz about childcare for when I do go back to work. There is a SEN nursery that he will probably access in September but what should I be looking for to provide wraparound care (they will only offer morning or afternoon sessions)? Do people find childminders sympathetic to the needs of ASD children or am I better finding a nanny? And would an SEN nanny be better? I only work 3 days a week (and may cut my days back to 2 days for a while until all is settled) so can you get an SEN nanny share? I am so worried about how to sort out new childcare for him that I haven't even thought about my DD (10 months). What have you found has worked/not worked? Also, the nursery is a LONG walk from our new house and so would I be able to organise transport for him only on the days a childminder/nanny has him? It's all so complicated...... Thanks Shamu

DS (aged 3) was only diagnosed in January but over the last 4 weeks his behaviour has got worse and worse. He is spending more and more time wandering around and running up and down the room and less time "playing". He used to concentrate on puzzles really well (doing 30 plus pieces quite easily) and in the last 4-6 weeks he's virtually stopped. There's only one "toy" that he plays with for more than 3 minutes and it's driving me a bit mad as it's a talking alphabet thing and it feels as if he prefers the voice on that to my voice . I was meant to go to the Science Museum with him today but couldn't face it as I knew I'd spend the whole time chasing him while the other 3 year olds enjoyed themselves It was regression and plateauing that caused my worry (he is now less able than this time last year ;( ) and I'm so frightened that there's going to be more coming up.... I just can't deal with it along with our baby and an impending house move. I feel like I'm failing him as he's not in nursery and goes to a very unstructured childminder two days a week as I need the break I love him so much but when he gets this distant I find myself really angry with him which is silly as it's not his fault. So then I get angry with myself for not being able to love him enough.... Sorry, I'm rambling now but I just want a way through this - a bit of light at the end of my dismal tunnel..... Shamu

I can't even reply here or on the original article.... Words like "victim" and phrases about how "doctors need to treat it "properly" and "their behaviour is linked to the pain they suffer" make me so so angry.... Shamu

Thanks Lynne! I'd love some ideas about where to get things so if you can PM me (or email me as you have my addy!) that would be great Thanks Shamu

So sorry you had a hard time I work on children's wards all the time and, I'm afraid, the staff have little or no training on how to deal with autistic children!!!! My training has all come as a result of specialising in the area rather than generic training. Nto good though..... You may find your community nurses will do one at home but it soudsas though you need the ENT specialist to see her too. Hope the Pendelbury are more geared up to it - make sure you ring and talk to the senior nurse BEFORE you go in. Explain your daughter's difficulties and how they can make things easier for everyone (including themselves!) Shamu

Have you thought of asking the parents if they'd fund a course for you? My SaLT is going in to see my childminder in a couple of weeks to help her to help my son. I'd be more than happy to fund a place at a course for her if we found one that I thought would be suitable. I know that you can get training to become a recognised "special needs" nanny - it sounds as though your experience to date would make you an ideal candidate for that sort of job. I am seriously thinking about searching for a special needs nanny when I go back to work but know that they are few and far between. We are sadly moving area and I'm really concerned about the upheavel for my son.... If you want more info about special needs training I have a friend with a special needs nanny and I can ask her if you want - PM me for more info Shamu

We're going to be moving house soon and I'm thinking about creating a sensory space for DS who is 3. He has a lot of sensory issues - loves chewing/biting things, textures, visual effects such as bubbles and lights, bouncing and running sensations, mirrors etc. If you were creating a sensory room what would be your "must haves"? Are there any guidlines on what things are good and what not to use? And places to get supplies? Thanks Shamu

Hi Lynne We're in the middle of a borough move at the moment - from Camden to Harrow (probably Pinner) and some properties are in Hillingdon some in Harrow. I am currently waiting for two colleauges to get back to me regarding provision for ASD children but have a little info at the moment. It's really important to me to chose the right borough as whilst cross borough provision isn't impossible it can be really complicted (having worked in the field gives me that bit of insight I guess!) I will pass anything I find out on to you if you don't mind doing the same for me! I know that Harrow has an active NAS branch and you may be able to get more info from them - phoning them is on my to do list for next week (maybe even tomorrow when James is at creche....) Feel free to PM me - if you want any help with the moving aspect I can give you some pointers there too! Karen

Really interesting thread and replies. We're at the point of it only just becoming obvious that James has difficulties with these things compared to his peers. He can't feed himself reliably, even with his hands he gets food everywhere. Spoon feeding himself with yoghurt is just about OK though he tends to tip yoghurt on the table (on purpose!) He needs a closed beaker to drink as otherwise he pours the water everywhere (again, on purpose!) He will pull at his trousers and lift his feet out, but can't pull them down any more. He can't take his top off though he helps put his arms in. He can manage zips and can take off cardigans and zip coats but leaves them on the floor (typical man!) He's still in a cot and I'm scared to put him in a bed - he tosses and turns all night and is usually at a different end of the bed when he wakes up. Plus we're in a flat so he'd get up and get up to all sorts of nonsense at 4am when he wakes... No progress at all on toilet training which is really annoying but we'll get there eventually. Shamu ;-)

the agreement is that James is on the autistic spectrum, probably high functioning but will need more evaluation. I was fine in the meeting but am falling to pieces now even though I knew that was the most likely conclusion. I know it will help us start getting the input he needs but I was somehow hoping there was a 1% chance they'd say "oh it's just a phase......" Shamu

Having read your follow up posts I think that the best thing you can do is persue both routes. So try and find someone who will do the initial stuff privately (hopefully for less than �500) whilst waiting for the NHS referral. Can you find a more sympathetic GP? Most GPs get absolutely no training in recognition (and management) of Austistic Spectrum Disorders incl Aspergers at medical school or during GP training. Like so many people, they are quick to assume problems are down to the parenting methods. You have a very clear arguement against this - you've used the same methods on your DD and she displays none of the behaviours your son shows. It's a shame that the HV can't make a direct referral - mine is able to and did so although she told the GP. To be honest, GPs have very little input into the whole thing that I don't understand why they should be involved. As a professional I've had referrals from nursery teachers, HVs, SaLTs and GPs and the ones from GPs are usually unhelpful..... If you're having a lot of difficulty getting an NHS referral then contact the NAS - they should be able to help you. Or what about talking directly to the Team Leader in your local Child Development Centre? It may be unusual but if you don't ask you don't get. Try every avenue available as you're the only one who's going to fight for your child.... Someone else has already mentioned Tony Attwood's books and I think they will be really useful to you. They may help you gain more insight into your partner's difficulties too. From your description, it does sound as though your partner has features of Asperger's too - it isn't uncommon for it to run in the family. Life sounds very difficult for you at the moment <'> <'> <'> You sound very very caring and whilst it is difficult remember you are the best parent your DS could have. By coming here and finding out more you are doing something very important - already you've changed your behaviour towards him and are reaping the rewards. Life with children is tough as it is, life with a child with social communication difficulties is much much tougher but with time it will get easier and more and more rewarding Take care and keep us updated! Shamu

I'll try and answer with both my hats on - as a parent who is currently going through the assessment process with my DS (aged 3) and as a professional who is involved in the "diagnostic" process. We have gone down the conventional route to diagnosis. I called my Health Visitor, she referred us to the Child Development Team and we have seen around 8 different professionals over the last 3 months. Many of them have seen DS two or three times and we have a care plan meeting next week where they will give us the diagnosis (if they think there is one) and a plan for how to move forward. To me, this makes sense. He gets a diagnosis and I get all the help that I need to encorage his development. For instance we see the speech therapist every 10 days and will be seeing the occupational therapist twice a month for the forseeable future. I would think that if you choose to go down the private route you would then be left without any of the support that the CDT can provide. Even if you choose to home educate your son you would benefit from the input of the therapists (they would continue to see your son at home rather than at school). The level of support they can provide is amazing - and with their input you will find things you can do to enhance his social, emotional and personal development. If it were me, I'd have no hesitation in getting him seen by the "conventional" route. Our referral went in on a Monday and by Friday I had the specialist health visitor on the phone arranging an initial assessment appointment. I can't fault our team at all, and I don't believe that a private assessment in a couple of hours would have addressed all the issues that this in depth multidisciplinary assessment has done. It has been just over 3 months from initial assessment to diagnosis and during that time we've had two 10 day periods away from home and the Christmas break, so in real terms it's probably only been 2 months. I think 9 months is rather unrealistic, but I don't know what the waiting times in your health authority are like (DS did have some very worrying features that prompted an urgent referral, but with decisions regarding schooling needed your case sounds very strong). Just one question, if you do go down the private route what would you do with the information? Would you be able to afford private speech therapy, psychotherapy, occupational therapy etc? I'm not suggesting that you can't go private, just wondered why you want to? I've found dealing with the emotional fall out the hardest thing - I am constantly amazed at how I "missed" my own child's diagnosis and feel incredibly guilty. No matter that everyone tells me I couldn't have known sooner etc. I only want to do what is best for him at the end of the day, like every other mother. Hope some of that helps and welcome to the forum Shamu

Thanks for thre replies. I saw our OT yesterday and she's fantastic. She agrees that he is very verbal and that actually our priority is to work on his disorderedness (running around aimlessly looking lost and unhappy) first so we can then get him engaging in the SALT activities. She's going to do some joint sessions with the SaLT which should be good. I guess they can't harm him, I just don't want him to end up in the situation described by a friend at her DD's special school where a verbal child who said "I want a drink please" wasn't allowed it until s/he used the PECS book!!!! Shamu

Oh Loupin that's lovely I often wonder what DD (7 months) will have to go through in years to come...... Shamu

Have been thinking about posting this for a few days and you've all been so helpful on my other thread that I thought I may as well DS (aged 3 and not formally diagnosed - have that to go through next week )is pretty verbal eg to get his needs met he asks for everything by name and he makes comments on stuff he sees etc. However, the SALT wants us to go down the route of PECS with the longer term aim of using it as a route to communication through language. I'm just a bit confused as to how this will work. Has anyone else started using PECS with a child who is already verbal? It feels like a step backwards and he's so difficult to engage that I don't know how to explain the concept of the PECS cards (guess that's the SALT's job to some extent!). He isn't a "classical" visual learner so may find them quite hard to start with. Also, how will I introduce them to his childminder? I think the SALT is going to contact her at some point but my understanding of PECS is that you need consistency in all settings. Thanks Shamu

A couple of incidents over the last few days have got me wondering what people say in similar situations, so I thought I may as well ask DS is only 3, but is constantly approached by well meaning adults who ask his name/comment on his hair/say hello etc. He hasn't been formally diagnosed but I'm certain he's on the spectrum (ADOS was a disaster....) What do you say or do you just keep quiet? The sort of situations I'm thinking about are ones where you'll probably never see the person again eg on the tube yesterday someone asked him whether he was nice and warm in his cosy scarf and at supermarket checkouts the assisstants always try to chat to him. I'm not sure that it's appropriate to say "oh, he's autistic so sorry he won't talk with you" but my only alternative "oh, he's not very chatty" seems wrong too (DH thinks I should just be straight but then I may have to launch into a full explanation of ASDs with someone who doesn't care/will never see DS again/hasn't got the time etc) So what do you do? Shamu

Thanks all It went as well as it could have although there was a horrible moment where he got a bit distressed and I thought it was going to be abandoned (no one heard him asking for water and of course he didn't keep asking or go to find daddy......) I was watching behind the one way mirror and DH was with him. Feel a bit lost now - we won't hear any more until our care plan meeting in January - 4 very long weeks..... It's a bit of a no mans land at the moment..... All I want is to get on and help him and it feels like we've been abandoned until then Oh well Shamu

Oh what a lovely positive post I will remember to do this this time next year Shamu

DH and I are currently getting family therapy through our GP. Like Eleanor, it's mainly helping us communicate effectively again as we're finding things with DS so difficult and upsetting we're not talking (I sit in front of the computer ini tears all evening while he clears up the mess that DS, DD and I have created in the day - he's a total angel) We have another session today actually. I've found it has helped me move a little closer to accepting what's happening with DS although I'm still in the mourning stage. It has also helped show me where DH is in the scheme of things. It's opened my eyes up to where the weaknesses (and strengths) in our relationship lie. It's also helping me deal with my parents' reaction (which has been very hurtful) Basically, it's been a great thing for us and I'm hoping we can keep going for a while yet Shamu

Thanks Carrie and Flora I think I'll get DH to sit in the other room with the baby unless the psychotherapist and paed want it the other way round (they may think with my inside knowledge I'll skew the results whereas DH isn't medical). Am dreading it as well as hoping it clarifies things too if that makes sense.... Shamu

That's great It just shows it's worth kicking up a stink sometimes.... Hope things work out well for you Shamu

Thanks Caroline I can't see DS lasting 2 hours He barely lasts 10 minutes at the moment ...... He's had several professionals observing him today and yesterday so this is a big week for him (and from what my childminder was saying today he's worked out something's going on....) Shamu

Thanks Cat I am still in a really difficult place when it comes to DS - still mourning for the little boy I knew and loved a year ago and coming to terms with the new one he's become.... I'm hoping that all of this will help us to move on but I'm feeling really stuck at the moment. We have a multidisciplinary care plan meeting in January so I imagine that's when they'll feed back to me in the main, but I will have my paeds knowledge behind me when they're doing the test so will no doubt see very clearly where his deficits are Shamu

Hope this is the right forum to ask this.... DS (age 3 last week) has his ADOS on Thursday and I'm not at all sure what to expect....I haven't any experience of the ADOS as a tool and don't really know much about it. What sort of stuff will he be asked to do? Will I be in the room with him or in another room observing him (and probably crying my eyes out ) I'm really dreading it to be honest as I'm pretty sure he's not going to do well (the psychotherapist has said not to expect it to bring out his strengths ) Am I likely to get any immediate feedback or will it be another long wait? I'd just like to be prepared if they're going to work out the score and tell me there and then Thanks Shamu

Oh that's lovely I hope once we are a bit further down the diagnosis/input line I'll be able to post a message like this Shamu