Hello im new and need some advice

[mylittlewizzle]

hi everyone, my little girl (now 4) has had behavioural and social problems that i have noticed since about two years old, i finally realised they were quite a strong issue outside of home when her nursery put her on an IEP for her behaviour and i visited my hv with a list of obs i had done and nursery ones too and she agreed that there are some issues there, anyway i had my referal appt yesterday and the specialist i saw said she is pretty convinced she has aspergers. i have a few questions really, is it normal to feel terribly upset, i didnt bond with her when she was born and had 40 sessions of parent infant pyschodynamic psychotherapy in london and feel so guilty, the doctor assured me this condition is from birth so nothing i did or didnt do would have affected it it anyway, and secondly what is the long term prognosis as i have no idea, we have been referred to various specialists and she will be having a CASBAT ? assesment amongst other things and we will be getting a family support worker too. i just feel so clueless and helpless but i am glad that everything that has happened there is now a reason behind it if that makes sense as certain family members would rather just keep on at me that shes only 3, then only 4, i envisage some of them saying it when shes 30! but i work with 2-5 year olds so trusted my gut instinct. sorry for long post, just feel better typing it down as have been quite emotional since yesterday.

[cmuir]

Hi

 

I felt a combination of emotions when my son was formally diagnosed with Aspergers at 4.5. Like you, my heart and my head told me that something wasn't right very early on. R didn't sleep well at all as a baby and even now, he had significant behaviour problems (and still does), he had strange rituals, the list goes on and on. My HV and GP both told me that it was the terrible two's from age 15 months to 3. By that stage, I'd well and truly had enough of being treated like a neurotic mother that couldn't cope. Truth is, yes, I didn't find it easy, but what I couldn't cope with was knowing that something wasn't right and being ignored. Long story, but after being passed from pillar to post, R eventually saw someone that had a great deal of expertise in ASDs who diagnosed AS.

 

Possibly a highly controversial statement to make, but I do feel aggrieved at times (not with anyone in particular) that it took me several years and battles before my son's disorder was recognised and then formally diagnosed. Whereas, in comparison, parents who have a child with Down Syndrome, for example, likely learn of their child's disorder soon after birth (I'm not for a second suggesting that they have an easy time!). It can be a shock to discover that your child isn't neurotypical a few years after they were born. I certainly went through a very difficult few years questioning my own ability as a mother, feeling a failure, etc etc. It was, however, a huge relief in a lot of ways to finally have a diagnosis.

 

Don't put yourself down. If your daughter has AS, it's nothing that you've done. Fact is, although a lot of research goes into trying to establish the cause/s of ASDs, there is no definitive answers. Instead of feeling a failure, you shouldn't - clearly you care about your daughter and you haven't buried your head in the sand! I know the parents of a child who has AS, and frankly, I genuinely believe that the child is missing out on a great deal of support, etc, because the parents haven't came to terms with his disorder.

 

You've certainly found the right forum. I found it an amazing source of help and support when my son was newly diagnosed (and I think, a few months pre-diagnosis too). Life does get easier. Sure, there are some tough times ahead, but I found once my started school - as he grows older and matures, I'm able to reason with him and he's made some great improvements. It sounds like you have people on your side who acknowledge your daughter's issues and that's worth it's weight in gold!

 

Best wishes.

 

Caroline.

[justine1]

HI

Welcome to the forum,it is really a great place to get advice and let off some steam

 

I have four boys,my second son is almost 7 and has Aspergers(AS) he got his diagnosis last December.My third son is age 4 1/2 and went for his assessment yesterday and also has ASD but not sure where(though the paed has ruled out AS.)

I am finding it hard to get to grips with the fact I have two boys with autism,even though I have known something was not "right" for some time.It is an emotional roller coaster really.

 

At least you can get the help now for your daughter rather than her feeling different but never knowing why.I try to treat my two ASD boys the same way I treat my other two boys,same rules for all,and dont make excuses for their behaviour.I still have the same hopes for them,and I will push them to do their best in life and not give up.I expect them to get a job and have some sort of social life,even if it is just a few friends,maybe even marry.

 

I encourage the positives and discourage the negatives.All you can do is take the help that is offered to your daughter and continue to be there the same way you would if she didnt have AS.

[mylittlewizzle]

thanks so much to both of you, i kind of convinced myself her problems were to do with our bonding issues at birth (even though we are hugely close now after the therapy etc..) i obviously still have to wait for all the official assessments but this woman asked me questions and it was like she already met my little girl! even without reading the observations and stuff, i dont look at her any differently apart from wondering how she really thinks etc.. but have been told that the tony attwood books are very useful.

 

i have two other children one girl 8 and a little boy of 1, so i kind of knew anyway she wasnt developing normally like my 8 year old did, my health visitor god love her is amazing so i thank my lucky stars as the one i had with my 8 year olds was horrific! i have been told it will take months to get the other appointments etc..

 

i do agree with you also that having watched my sisters experience of getting her son diagnosed with adhd took 4 years, he was 9 when finally diagnosed and is now 18 and has been a changed child since medication etc.. but what a ridiculous time scale!!

 

i guess its like depression as its not a physical visible problem etc... thanks again for your comments and i will def use the site now xxx

[jo10]

hun i do feel for u i have 4 children and my youngest boy who is 3 n half has shown problems since a baby with not sleeping and needing sleeping drafts, hypo, licking everything, pinching himself,having meltdowns over it raining, the bath,he gets v scared over the silly lil things and walks on tip toes 95% of the time,to name but a few...i remember when he was 10 months old spining coasters around again and again for hrs. and also had really bad pica..he went to a spec group to help him at 18 months..and i was told he was like this because i had a baby when he was 12 months old!!! he was like it before..

anyway he has been getting worse and when he went to nursery after just 2 days there the dep head who is a SENCO trained said thet they where worried about him and has referred him to see a counsultant paed..we have the appionment next wk...x

[mylittlewizzle]

hi jo (is that your name! never know with forums im zoe !) good luck with your appointment my issues with my wizzle are long and winded but usual stuff like has typical obsession with wearing dresses, picks scabs compulsively (altho im told that is an autistic trait now not aspergers??!) hates diversion from routine, no concept of danger, is extremely affectionate with random strangers (to the point of embarassment), she has an affliction for bags of any type, if a charity bag comes through the door she has got it and put stuff in it before i have even noticed its been posted, has a huge issue with toilet training, the day of my appt with pead she wee'd on her bed, so i subsequently burst into tears the minute i walked through the door to see her! if i drive a different way to a usual spot (by accident lately as i have become accustomed to the meltdown if i go the "wrong way") bed times are the worst as my partner works nights and i am still off on maternity leave so i have them all day so night time is my only respite but she is continual in the fact she will call me up and i will ask what she wants and she will go "mmmmmmmmmm" then it doesnt matter how many times i try to stop the conversation she just carries on.

public places are THE worst even the school playground as i am positively on edge as she has no hearing problems but will only react if i screech at her and then sometimes just stares straight through me, its nice to know im not alone, altho i feel it at the moment, hopefully using this forum will help. i could go on for hours about mannerisms and such but i guess you all know where im coming from, thanks for such a lovely welcome xxx

[LS2242]

Hi and welcome to the forum. I only came across this forum a month or so ago myself and I have to say the people on here are great. I have received so much useful advice and support and it has given me such an insight into ASD from personal experiences rather than reading from books.

 

I have 3 children and our youngest (9) we have been told has AS although not a confirmed diagnosis as yet as we are still going though the process.

I have said since he was about 2yrs that there where differences between him and our other children but I kept getting told, it's the terrible 2's, oh he is a boy what do you expect! We then had a new HV and she said after ten minutes that our son had autism. I was so cross that she had labeled my child within minutes of being in my house that I nicely told her to leave. What a mistake I made. If I had listened instead of burying my head in the sand then we could have had help, support and guidance years ago.

The reason he is under going assessment now is that we thought he had OCD due to his lining things up and set routine (these where effecting his daily life to function). When the CP told us he is 100% certain he has AS, it came as a complete shock. the only way I can describe my feelings at the time, was like grief. I had lost the little boy I had. How wrong I was, I still have the same adorable boy I had then only now I have accepted that he has difficulties and that there are reasons for his behaviour.

Nothing I did before or after childbirth could have prevented him having AS.

 

What is important is that now we have an explanation is that we do our utmost to support and help guide him through life. Give him the foundations so that he can build an independant life for himself. It is tough, but am told it gets easier!

 

Your daughter is young and given the help at such an age can only prove beneficial for her and your family.

 

 

 

[jo10]

yh hun my name is Jo(well joanne really..lol)

my son has routine and esp worst at night and will only go to sleep for my hubby...he does not sleep well either and my hubby has to get up for work at 5 and he finds K awake on his bed watching tele ...he shares a room with his older bro and im forever getting told that he gets into bed with him..i thought he was doing really well with sleeping but we have a 3 floor house and his bedroom is on the middle floor and mine is on the 3rd floor..and he used to come up if he woke up now ive found out he just bugs his bro ..

im having alot of trouble with him and the telle atm..he will only watch ceebies and that is it..he has a huge meeltdown if i turn it over esp to the disney channel he will not watch nothing on there...its a pain cuss my 2 youngest love the channel..sometimes it feels like the whole world revoles around k..i know he cant help it..i really feel for him....

oh and i know what u mean by being over affectionate...k just licks and he dont care where or who.....but hun if ever u need a chat im here...my friends try to understand but they have not been through this...so this forum is a gd surport and help..

[mylittlewizzle]

jo, my girl is the same all three share a room and its a nightmare she wakes everyone up, hits my eldest on the head, hides her stuff, messes with my youngest. she also sleepwalks alot and one mornin my partner came in from work (lorry drives nights) and found her asleep on the kitchen work top ! looking back over the past few years it all makes sense now.

i know what you mean bout friends mine are far from supportive etc maybe ignorance i dont know but past caring now !

[baranigirl]

snap with my 4yr old, she wakes anytime from 2am and is wandering about the house 'eating breakfasts' and playing downstairs

 

We have divided the bedroom she shares with her broither to give him some peace, but she is often in his cot with him in the mornings. If we actually heard her we could be more consistent with sorting it, but we rarely hear her so she gets away with it

[mylittlewizzle]

snap with my 4yr old, she wakes anytime from 2am and is wandering about the house 'eating breakfasts' and playing downstairs

 

We have divided the bedroom she shares with her broither to give him some peace, but she is often in his cot with him in the mornings. If we actually heard her we could be more consistent with sorting it, but we rarely hear her so she gets away with it

thats very much the situation in our house! and when all three have had naff sleep its horrific! i have the eldest in with me through the week because of school and such but we are considering moving back in with my youngest so that wizzle has a room to her self, she has been prescribed melatonin already, which has worked on and off, although i have been warned it may increase the sleepwalking and its really trial and error at giving it at the right time etc... as you are supposed to give it an hour before they actually fall asleep and thats a blinking lottery for us as we can put her to bed at 7 and shes still awake at 9 or sometimes she goes straight to sleep etc then is up again later (4am is her specified time of getting up usually altho it does vary )

and yeah she does come out of her room and venture round the house, and is very quiet about it! so much so a year ago i was convinced we had a ghost as little things had been moved downstairs and stuff and my other half usually gets in around 5am so it was quite a relief to know it was her!!