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remember me? update on my little man - louismama

(12 Posts)
louismama Thu 09-Jun-05 21:55:31

Hi to all, loads been happening with us, moved home, back to the u.k. for the referral to the cdc for assesment(turned out to be preliminary, only a salt as a rep. of the cdc) now have to wait 6-12months for full profile ass. by team. Got evaluation from the centre in spain not good reading think they like to sugar coat things out here to keep parents positive only tell you if you ask. Oh bugger really wanted to do this but ds has decided he really doesnt want to watch pingu and so im off to do the bath bed routine (ha ha like he ever goes down that easy little tike) will catch up later if people have got time to listen.

TheRealMrsF Thu 09-Jun-05 21:57:25

So glad u are back!

coppertop Thu 09-Jun-05 21:59:16

I was wondering where you'd disappeared to, LM! Welcome back.

louismama Fri 10-Jun-05 00:11:55

ok here goes, Thanks for the welcome girls loads happening but also think i needed a bit of time out from mumsnet too, that thread a while back and a one line comment someone made( dont think it was intended the way it was received at least i hope not) made me feel i was being pathetic and feeling sorry for myself, now i think sod it my parenting experience IS more challenging than other peoples and i have to work damn hard for things nt parents take SO for granted; if i have an off day or even couple so what im doing the best i can.

The ass. was ok lovely lady salt very attentive, i was fully armed expecting to get fobbed off the appt. was at my parents home and was to last 1 1/2 hours actually lasted 3. Didnt do the video fotage though when i went to film louis he didnt want to display any of his quirky behaviours and frankly i found stalking him around waiting unsettling. She took loads of notes and said although she felt asd was a possibility she would present her info to the panel at cdc and they would decide if ds shopuld follow the development ass route or to see the autistic ass team (much longer waiting list of course) the later is what they decided btw. I had letter from the phycologist who heads louis centre in spain i think that was the thing that swung it: alot of the basic dev. ass stuff had already been done by them, including a CHAT at 18 months not that shed told me! pychs evaluation put ds at 16 and 18 months for gross and fine motor skills, 12 for cognitive level and only 6/7 months for receptive and expressive language ouch!!!!!!!!!!! abit harsh i felt as he can make almost all constant sounds apart from l, q, f but oh well.

They are always quite positive unless you ask the straight questions i still dont think she would have mentioned asd now if i hadnt asked. I felt i needed another slap in the face so when i got back i asked her when she first suspected and she said as soon as she meet louis at 12months. Dh was abit annoyed at that he said if we had know we wouldnt have introduced all those dodgy foods into his diet which were followed by such a marked regression, I try to see it positively also, until february we thought we had a little boy who had hypotonia and was a little delayed in other areas due to his late walking; other than that we were blissfully unaware and so happy as a family and no one will ever take that time or those memories away. At the same time im having a lovely time as a first time mom ds was actively receiving stimulation twice a week with asd in mind not all asd kids are that fortunate. The salt from the cdc was full of praise for the stimulation we give ds at home and how well informed i seemed to be, i told her whilst i appreciate the kind words does she not understand it will never feel as if im doing enough for ds, which is why i want specialist help because i dont know where to go next. Also stressed the point that i wanted ds looked at in concideration of all the help he has received from an early age and not just at a glance 23months he can do this and that some of his acheivements have took months of reinforcement, she agreed.

Ds behaved just as i would have wanted him to showed most of his strenghs and weaknesses(although i have to say when he slouched against the play assistant a total stranger and carried on stacking his barrels i had to laugh as i certainly wouldnt say that was typical)

In general i dont want to curse myself but things have been ok both dh and the therapists here seem to think the diet has been helpful to ds which is encouraging; as it is depressing keeping to it when you get comments like cant even buy my son/grandson an ice cream - like it matters in the scheme of things but makes you feel bad as if your depriving child. Ds makes small progress every week he will smile and give dolly a drink or food now (i was so proud) is beginning to throw, climb, is off the bottle can go upstairs better although would still happily walk off top step if allowed. New asd traits appear simultanteously as acheivements though one day he started stacking unprompted then moved on to linning up things hasnt got bored of that half as quickly!!!!!! He flaps and tenses like you wouldnt believe and makes me laugh as he does this strange little bum giggle at the same time. Most importantly eye contact with me and his relationship with his father have returned and that warms my heart.

Have been intouch with BIBIC, trying to wrangle a first ass at mobile clinic in bham and not have to go to sommerset difficult coming from spain.

Have finally got louis into spainish medical system and got a referral to pead. neurologist so hopefully may get CAT and gene analysis stuff done here where i believe they are quite standard.

I could go on but only corspes may remain where there used to be mumsnetters.

coppertop Fri 10-Jun-05 18:52:04

In a way it's probably a good thing if the reports show Louis as being more behind than he actually is. Hopefully it will make it even more likely that you will start getting the help you need.

I know what you mean about making sure that the pro's know that your ds can only do X,Y or Z because he's been taught it. It was something I worried about when ds2 was being assessed. I didn't want them to think that he must be okay just because he could point, could say a few words and was smiley. The only reason he could point was because he had been taught how to do it. Luckily they took it into consideration when assessing him.

Ds2's traits are starting to show more and more IMO. Like you it seems as though we have success in one particular area, only to find that something else has suddenly 'appeared'.

It sounds as though you've got Louis' name down on all the right waiting lists.

RnB Fri 10-Jun-05 21:15:34

Message withdrawn

Davros Sun 12-Jun-05 09:33:52

Hi Louismama, nice to hear from you. I am just trying to catch up here so sorry its taken a while to respond. Sounds like you did a really good job of getting the most out of the appt. What happens in the long term with being in Spain, will you consider coming back here or stay put? Big decision but no need to think about it yet I suppose. Spain has quite a good reputation in terms of ABA, I believe there are a couple of universitites with good programs, I may be wrong as its a long time since I looked at early intervedntion though (Bilbao I think?). Of course it helps that Spanish is the second language in the USA so you can get lots of books etc in Spanish. Sorry if this irrelevant!

louismama Wed 15-Jun-05 01:59:48

Hi davros, I would like to go back to uk for myself, family support etc. but dh loves it here and i dont think ds would get nearly as much help as he does here 1 physio sesson and global stimulation in which they are now introducing TEECH methods(hope i spelt right, including visual timetables which ive been advised to use at home too) 3 x 45min sessions week will increase to 5 as soon as space available. The phycologist and one of louis therapists have just been to the spanish national autism conference so im hoping they are up to speed and eager to help. They have done great work with him so far but my biggest concern is the language, ds babbles quite beautifully but more to please himself than to chat to us. Obviously i want him to be able to talk and they say most children who are exposed to 2 languages speak late what if its just too confusing for ds. I requested he be given therapy by the english speaking salt but shes not specialised in asd and cant be freed up anyhow. The phyc said 1 language is better for louis so i should speak spanish to him (i can order a glass of wine at lightening speed but am not even conversational level after that) besides i dont want to ive been speaking to him since before he was born in his mother tongue if for some reason we eventually do have to return what good would it be if he couldnt even communicate with his grand parents. Does anyone have any experirnce like this am i doing more damage than good keeping him here? English salt from cd who did ass. said it not so much a problem if only exposed to one at a time i.e. me and therapist talking in same room in 2 languages a no go~ that made sence to me. I get so annoyed though "when in Rome "and all that why do they think i bought him here at 6 months ~to make intergration easy. Id just like him to get mommy daddy down pat before he addresses the rest of the country. I know they are only thinking in his best interests, spanish school at 3 will be difficult to say the least otherwise, but things can be a bit blunt in tranlation when told if we teach him in english we will be wasting time i was peed off.

louismama Wed 15-Jun-05 21:28:42

sorry to bump my own thread but just wondered if anyone had any advise on the two languages and asd issue?

louismama Tue 19-Jul-05 18:09:56

Hi, just to let you know have seen neurologist out here in spain wasnt a particuarly pleasant experience he called in his senior and they both sort off looked at louis as if he was a painting or something, were refered for ct scan, audiology test and karotyping looking for fragile x and williams syndrome the later of which when i did a little research sounded absolutely nothing like ds. I suggested fragile x as hypotonia is something which doesnt really seem to come up much in asd delay in physical milestones yes, but actual dx of hypotonia as ds had no. Was really p**sed off at ct scan as had asked when booked apptmt if food drinnk needed to be avoided and was told no so when got to hospital after train broke down for the second time in a fortnight and they said they couldnt do it as they needed to sedate was furious. Someone had wrote 14years on ds's form (hes just 2) Luckily it all turned out good i managed to get him to have an unpresidented early nap and they did it while he was asleep so no need for sedation which was a worry when it first requested at 12 months. On the downside the genetic tests not till nov. and neurologist said to go back when I have all the results suppose will have to cause a sink as dont see the point in doing a brain scan and waiting several months for the results.

Davros Tue 19-Jul-05 20:45:43

Hi LM, on no, you used the phrase "little man", I couldn't possibly partake in this thread
We were discussing the very issue of a bi-lingual household at our last support group meeting. The consensus was to teach in whichever language the child needs to communicate with peers but don't hold back on using the other language in day-to-day life with grandparents etc. There were about 3 families at the support group meeting who speak two languages at home and they found that their child with ASD used English to communicate but understood the other language iyswim. Hope this helps.
I'm sorry I hadn't looked at this thread before as I didn't see you other post about moving back to the UK. Basically if its not an option for you as a family then best to do what you can where you are. If it is an option, where would you live? One thing that would be worth "getting out" of the UK is an Earlybird course with the NAS. Mind you, it might be worth looking at Autisme Europe, I don't know if its any good but I know that an NAS person is part of the set up as well as people from other European autism orgs. Sorry to hear about the stressful and upsetting appointment

wads Tue 19-Jul-05 22:02:42

hi LM. I live in Portugal so our 4.7 ds has had both languages from birth, although mainly english & after 1.5 years at Portuguese creche still has very, very poor Portuguese (english also v. delayed but quite understandable to family). I've agonised over whether I should start speaking Portuguese to him to stimulate that language but have always spoken english & do think parents should speak their mother tongue. Got really stressed the other day on reading somewhere that AS (he still has no dx) kids can never learn a 2nd language, but also think every kid is an individual so don't believe all you read (yeah, yeah). Would be very interested to hear from any other bilingual families with SN kids and what worked, or didn't, for them.

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