Jimjams??? HELP!!!!!!!!

[Chandra]

I would like to apologise first for the abrupt method of contact.... sorry, I just thought that you were the person I could ask these questions and my e-mail is not working very well lately.

My sister's DS (2yrs3m old) has been exhibiting some symptoms of autism, finally after a year of asking diferent doctors the pediatrician refered him to a neurologist. The problem is that my sister is not very sure of what to expect, or what questions to ask, I think she is very shocked with the news mainly because autism is rarely diagnosed in my country (my guess, not because there's none but because there's very little information available).

I have been trying to find more information in the internet but the very few pages I can find in Spanish... well, let say that the information provided doesn't seem very reliable or I haven't find the good ones, so, I thought of asking the following:

If you could recommend the best websites you have find (in terms of diagnose, what to expect, early education and specially what questions to ask), which would they be? If you have to had them tranlated which would be the favourite ones?

Sorry to botter you in this way, but thank you very very very very much in advance.

Chandra & Pikis

PS Of course, if you are not Jimjams but you feel you can help, please be asured we would really apreciate your postings.

sorry about that chandra,it must be hard but time really does fly and before you know you'll be there,i'm sure your sister knows how much you want to be there and appretiates your help
otro abrazo

hi chandra
any news from your sister?i don't know the time diference so maybe is too early for you to know

Thanks for asking whymummy, it really help to know that someone cares about it. Thank you.

He must be having his first test as I write, will have another one tomorrow morning, I have been in contact with my parents and agreed to ring them all on Sunday to see if they have any news, not ring my sister yet as I know she likes to forget about things until she really needs to face them, and ringing her before the tests would only get her more nervous.

I'm becoming a bit paranoid, another nephew (2yrs old) seems to have a hiperactivity problem (sorry don't know the correct term) and what has every one worried is that last week he fell from the bunkerbed and hit his head against the metal of the bed below it, he beat his forehead so badly that he needed to have plastic surgery but everybody is worried because he doesn't seem to feel any pain, they have noted this before but it was not until now that it has become so obvious, he was not even bothered by the examination by the doctor just after the incident (???). I really don't understand what is going on...

Gracias otra vez

CH

so sorry about your other nephew chandra i hope he's ok,i'm now worried about my 7 month old niece,on her monthly visit to the paedritician(sp?)my sister was told that martina's head was too big and they're going to do a scan
let us know about your nephews when you know more.
saludos xx

Chandra - My ds1 also feels little or no pain, except for the palms of his hands. It's part of his sensory integration problems. It's harder to deal with when they are very young as you really have no idea whether or not they've had an accident unless you're there to actually see it or if a bruise appears. The good news is that it seems to be easier now that ds1 is a little older (now 4yrs old) as he can at least let me know if he's fallen over so I can check for injuries etc.

My ds2 (17mths) is the hyper child who literally climbs up the walls and is always active. Even people with lots of childcare experience eventually ask "Doesn't he ever stop and sit still for a moment??"

I hope the tests went well for your nephew/sister.

I hope your niece's scan brings good news too, Whymummy. xx

Sorry to hear about Martina Whymummy, I hope her scan goes well and bring good news. When is she having the test?

Can not get hold of my sister yet, DN has had his test yesterday but, according to my mother, the doctor didn't say much (maybe waiting for more results, he is having a scan this morning).

Please let us know how your niece is doing.

Coppertop, I guess they don't stop, I have two hiperactive friends, one finished a novel at 26, the other one exercises two hours in the morning and two other in the night (she is 5 yrs older than me but looks ten yrs younger ) So no, they don't stop but they have made a lot out of their energy

thank you coppertop and chandra,i think the scan is in two weeks time,i will be on holiday but as soon as i get back i'll let you know how it went,i'm sure is nothing i tried to reassure my sister by telling her that i had a huge head as a baby,i look like an octopus in all my baby photosanyway it made her laugh and she felt better thinking it just runs in the family
chandra i hope everything goes well for your nephews,i'm going on wednesday maybe you have some news before then
lol xx

Hope you have a nice holiday, and that everything goes well in the test, please post when you are back

Big head's do run in families. I have a big head. Last time I bought ds2 a hat (he'age 2) he had to have age 7 -10 (no wonder I had a section ). Ds1 also has a big head -all his reports says "megacephaly" (although its smaller than ds2's). It was an issue initially as a large head can be an indication of Fragile X- which is a fairly common "cause" of autism- but he doesn't have fragile X. They routinely test down here anyway once a child has an autism dx. The paed just said his head's big because mine is.

My mum's always said they kep measuring my head after I was born as it was so big.

lol jimjams i've always had trouble finding hats for my two.
thanks chandra i will keep an eye on this thread till wednesday to see if you have some news
lolxx

any news chandra?i'll be checking later on,we're off at 5.30 am tomorrow, hope to hear from you

Not yet, thanks for asking, he is having yet another test today and they have told me they will get the results of last week tests in 15 days time.

Have a very nice holiday! are you going to Spain?

hi chandra
good luck and i hope everything is well.
we're off to croatia and another 3 countries i will need a week in spain to recover
talk to you when i get back.
saludos

It's official now, I don't even know if I really want to post about it as I don't have the full details. Older sister has been advised to leave her job so she can be the only carer and can introduce more discipline at home(atm her DS is with her MIL while she works), take him to the psycologist, asked to look for speach therapies (if she manages to find a place in her area, probably they will need to move to another city).

ATM is my older sister who worries me, I know about all this by my younger sister but sister 1 has decided to shove all below the carpet and pretend everything is OK, or wait for the problem to disapear by itself (She always do things like this but never with someting so important). She said she won't leave her job as the wonderful medical service she has at the moment is one of the benefits of her job which is in itself a very good point, but during all these 3 days she has been alone at my parents' house has not cooked a single meal for her DS and have just feed him oats or egg, younger sister was going to get her something to eat today as even with the fridge full she is not bothered. I'm afraid she may be depressed but she would never recognise it or look help, I have mentioned about getting information in ways that she could help her DS but she doesn't want to talk about it.

If it was not because of the hour I would guess that nobody cares... sigh

Of course people care Chandra. I'm afraid that i've not been involved in this thread beacuse I din't know enough about your situation to comments and stayed out as it was jumJams whose help you needed. I;m so sorry and sad that you must be feeling so terrible and so worried. I wish I had something more constructive to add or there was something I could do.

chandra - it's not that I don't care but I never post on SN threads, tho sometimes read them, coz I don't have any relevant knowledge/experience, so don't want to say anything crass that would upset anyone.I hope that once the initial shock fades off, your sister will be a bit more able to cope with things.

Chandra, I am sorry your sister is finding it so difficult and hope that her current reaction is due to shock on getting the diagnosis. I think that it is a huge shock no matter how well you think you are prepared for it.

I remember reading on here ages ago (I think it was from Jimjams) that a parent with a special needs child almost has a 'grieving period' after the diagnosis during which time they come to terms with the 'loss' of the family they thought they were going to have and to come to terms with the needs of the family that they do have. The original post was better worded, and OI found it extremely helpful in coming to terms with my feeling about my son who at the time was not diagnosed with anything (but he has since been diagnosed as dyspraxic and poss autistic) because he was a lot different from how I expected him to be at that age.

I am sorry for rambling, but it may help to have another perspective - from a parent with special needs. I hope your sister asks for, and gets any help they need, as a family, very soon.

Chandra, people really do care - I am sure there are dozens of MNers thinking of you and your family right at this minute, but all racking their brains to try to say something beyond sending loads of sympathy (which of course I do send).

From your posts it sounds as if isolation is the hardest thing just now - yours from the rest of your family, and your sister's from any sort of network of parents with children with special needs. Did you manage to track down any Spanish-language US sites about autism? I am sure there will be some, and that they will help even if the details as to medical systems etc. will be different. Another idea that might help is speaking to the UK organisation Contact-a-Family, whose purpose is to put families with similar difficulties in touch with each other. Even though it's UK-based they may have ideas about how your sister can find support elsewhere, or even be able to put you in contact with others in the same sort of situation as you yourself - ie, who are trying to support other family members.

Hi Chandra.

Sorry to hear that the news wasn't good. I would guess that the news is still sinking in for your sister. It can be a lot to take in even when you have been pushing for ages to get a diagnosis. To be given a diagnosis when you weren't really expecting it must be so much harder.

It may be early days yet but has anyone said whether the autism is severe, moderate or mild? The variations between one autistic child and another can be huge.

Would the MIL be willing to take on some of the responsibility for taking your DN to appointments and following up with any therapy that may be needed? If so then perhaps your sister may be able to continue to work outside the home. This may give her some much-needed respite as well as keeping the medical insurance benefits which the job gives her.

If there's anything I/we ca do to help then please let us know.

Haven't read all this but I don't necessarily agree with the advice to leave work and become a full time carer- especially as he is with the MIL who presumably loves him and will want to help? I don't work at the moment. But I know I could not be a full time carer for my son atm- it wouldn't be any good for him either.

Taking on an autistic child full time is incredibly hard work and if she has to go give up a job she loves she is not going to necessarily be in the right frame of mind. Maybe she could look up ABA and work around that. That way she would be earning money to pay for the programme but woulnd't be working all the time. Autistic children need more than discipline they need structured therapy.

Which country is she in? We might be able t find something about ABA services. Does she speak English- as there are lots of English resources on the web. Might be able to point you in the right direction.

Aggh I'm not making sense today- I meant that by working and earning money for the programme she wouldn't be doing therapy all the time.

Thank you all for your postings and sorry if I sounded like so (have no word sorry...) but I understand I posted late at night and couldn't have got replies so early in the morning... I think the isolation problem is the big issue, they decided to move to a rural area some years ago and they are a good 3-4 hrs drive from the next city. I have suggested her about programmes that she could do at home but she doesn't want to talk about it, and obviously she must be really worried about the implications of moving to another city/stoping work now that they are already settled in another one.

I guess I need to wait for the thing to sink in before offering more help. I have been reading about ABA Jimjams but if you know of an ABA association in Mexico please, please let me know (BTW her English is slightly rudimentary...).

PS. Good thing is that there is a an association of mums of children with autism in the nearest city.

Thanks again