Will My child have a "normal" life? This question wont leave me alone.

[MustBeTimeForWine]

Firstly, I would like to say that I really don't want to offend anybody when I use the term "normal life". I do understand that many of the mums/dads who come on here are probably having a much tougher time of it than I am, but I would really appreciate some advice.

My dd is nearly 4 and due to start reception class in jan. Transistion has already begun. I think pre school have already labeled her as being on the Autistic spectrum, a milder form, but never the less they certainly have their concerns. It used to be a mixture of behaviour problems and social skills which concerned them. Now, I think it's more her social skills. For example, she can be over the top friendly. She will tend to introduce herself again and again and she can very rarely stay still. Also, she will tend to repeat things over and over, such as scripts from a tv show, but with no link as to why she is doing it.

Health visitor isn't sure what to make of her. Thinks she's improved a lot over the past weeks which she doesn't think she could do if she was on the spectrum. I think I disagree so I'm going to be asking for a referal.

I have done so much crying over the past week. Everytime I look at her, I feel so sad for her and so bad that I can't fix whatever it is that is wrong. Like I said at the beginning, I know that so many of you are going to understand this feeling and then some, but i'm right at the start of all this and I don't know where to get my strength from. I'm doing everything I can for her so it's not like i'm shying away from what needs to be done, but as soon as she goes to bed I just break down. This makes me feel even more pathetic.

I suppose as well as advice, I was hoping to hear some happy stories where children on the spectrum have managed to get there in the end. Just making some friends even, as my dd hasn't yet. Most children will just look at her like she's weird. It doesn't bother her, but it bothers me so much.

Thanks for reading and appologies for the length.

I have exactly the same problem as you - it goes round and round in my head. I suppose the best answer is that we have to do all we can when they are little to teach them the skills they will need in later life, so that they can have the best possible chance.

I had a massice cry the other day sorting out my childrens savings accounts. They are meant to be for university (they were set up from birth) and all I could think of was that DS2 probably wont get to uni :(. I dont know if he will or not, but its so difficult to think positively.

Poor you!

You are making life hard for yourself! Take it one small step at a time, she has plenty of time to fill her potential. My dd2 does not have any type of autism, but we have had similar crises about her growing up.

For a start, at least you are aware of some issues she might have (but a HV might not be the best person to get a diagnosis from!). Has the pre-school SENCO seen her? Get talking to the school about your concerns, get them on board early on, get help in place early on.

And don't set your goals for adulthood too early on!

Time for a coffee and ?

yes you need a referal as children spectrum do make improvements. I have 2 girls, one has a dx of ASD, other going though assessments atm.
They are wonderful sweet girls that just need more imput than most is all. DD1 is in mainstream school and DD2 goes to a special preschool.
Honestly normal is over rated!
We go swimming, to the farm, out with friedns, out for dinner, parties ect, we just have to be better prepared.

HTH

I'm on my 3rd cup already. That one's just starting to kick in.

I have already met with the school a couple of times. Recently met with the lady who runs the reception class and the lady in charge of the special needs department. Both were really nice and understanding, but I felt deflated. I think it was because, this was the first meeting i've had regarding dd where it just suddenly felt real.

Don't get me wrong my dd isn't badly behaved all the time. She can be the kindest and most loving little girl in the class sometimes. Yesterday though, was a BAD day. We were hit, kicked, bitten, scratch, you name it, we got it. She only ever seems to say sorry to get her toy back, which i've taken as punishment. She sometimes will even carry on biting, hitting etc, whilst saying, or should I say, screaming sorry. Sometimes she really doesn't understand remorse and then sometimes she does. I would say that nothing adds up, which is why we're all confused, but someone else might say that it does add up and that they can be very up and down.

It's just so hard.

Lisa, How do you prepare better?

for example if you were going out and suddenly needed to stop at a shop unexpectedly - how do you manage that? sorry genuine question as this is a bug bear with DS1

I was reading another post on high and low functioning ASD and star was talking about being told her expectations were too high - . The reason that we are all on SNMN is to get advice because we all care and want the best possible outcomes for our DCs. the fact that you care to be interested in your DCs welfare and future is all the strength that is required. Meltdowns every now and again are par for the course, but each knock back will make you stronger and more determined that your DD will be happy, get the best, etc.
No harm in having aspirations, but why not focus on the smaller steps to achieving them? Settling into school and getting the help that she needs to socially interact seems to be the first target. SENco and Developmental Paediatricians referral seem to be the way forward.
On the plus side, there are SN mums that post on here that are on the spectrum and obviously very well educated, and a friend of mine has Aspergers and is a Dr. so education is not a barrier in all cases.

Things can and will improve.

My ds has never been officially diagnosed with anything but from the age of 4 til about 8, had his obsessions, which he could not stop talking about ever.

He's much better now, although I have to remind him sometimes that others have different interests. But he fits in well with his peers and has strong friendships.

Thanks for that auntevil. Feeling a little more positive actually. :)

I have spoken to amberlight a few months back now and I have to say ignorence certainly isn't always bliss. I can honestly say that I have never knowingly spoken to an adult with Autism before and I was so suprised and relieved when I spoke to amberlight, because she came across so intelligent and to use the dreaded word again "normal". The only thing that did make me sad when I spoke to her was that she said she's happy now, but the first 20 years of her life were a terrible struggle to say the least. Obviously times have changed now so people are more understanding I suppose, but let's not pretend that there haven't been times when you see adults looking at your child in a certain way and you just want to scream at them for being so rude and ignorent. Children don't know any better so even though it still upsets me when I see children looking at my dd in a certain way, I can't be angry or offended obviously. Adults in this day and age though, really should know better. I understand that not everybody lives in our world, but the information is out there surely for people to understand the difference between naughty and Autistic etc. I don't know. Maybe i'm being unfair.

Sorry to have rambled again.

star, basicly we dont do anything we havent planned if at all possible. If we do have to we prepare DD1 for it as much as possible, explaining what will happen before, during and after, and give her time to process this.If its not possible, we just have to ride the fall out until its finished :(

lisa yes thats what we are trying to do atm. thanks

I don't usually do this but:

Normal Syndrome

'How to give parents a pre-natal diagnosis:'

I'm very sorry, I have the results of the genetic tests and they have confirmed our suspicions that your fetus is what we call ... Normal. Some people prefer the terms "Ordinarily Challenged" or "Normal Syndrome". The syndrome can be easily identified by a complete lack of any interesting genetic characteristics. I know this will come as a shock to you, but you should be aware of what this is likely to mean.

If your fetus manages to survive the rest of the pregnancy and the birth, which is becoming more common these days, he or she will face some daunting challenges. Children who suffer from normalcy are prone to health and psychological problems. It is almost certain that the growing child will suffer a seemingly endless stream of viruses. They will frequently damage themselves, and sometimes others, from their excessive energy.

Their relentless demands will put a strain on your existing family and, of course, your relationship with your partner will suffer, and possibly end in a painful and acrimonious separation. Any children you already have, even if they also suffer from normalcy, will be jealous of the newcomer and all their extra attention. Many siblings are liable to be psychologically scarred by the new arrival.

I need hardly mention the financial consequences, although disastrous, they will be nothing compared to the emotional turmoil your life will suffer.

After a while, you may be lucky and find they can be kind and loving young children. They may find some temporary happiness in things such as music, dancing, food or playing with toys.

But if they survive early childhood, a Normal child is almost certain to grow into a Normal adolescent. Your years of sacrifice will be thrown back in your face as they become disobedient, wild and reckless. Unable to find happiness and contentment, they will treat you with contempt until they manage to leave home. Even then the suffering will continue as they will often return to try and extract money. They will blame you for their own faults and leave you bitter and twisted.

They may well become criminals, over a quarter of Normals will have trouble with the law, many will spend time in jail. Many will have problems with alcohol or drug abuse. Normal marriages are often
unhappy and short and over half end in divorce.

Even if they become successful this is likely to be because of the often observed tendency of Normals towards excessive greed. The chances of them sharing their success with you are remote and they will tend to see you as an embarrasment.

Finally, Normal people are likely to die before their time. 23% will die of cancer, 33% of heart disease. Hundreds every year in this country alone are so distressed by their condition that they take their own life. I'm sorry to say that many will have had a lonely, painful and pointless existence.

I am afraid that Normal Syndrome is a genetic condition that affects every cell of the body, and so is impossible to cure.

Termination is an option.

Shall I book an appointment?

..... from a parent who received a diagnosis rather like this.

Bob Lincoln, author'

I LOVE that star!!

Hugs. I think we all wonder the same question now and again. It isn't easy.

Yes a referal would be the best way to go. And a HV as nice and helpful she may be, she isn't qualified to decide whether your DD has an ASD or not.

Since he hits the age of 4, my DS has made good progress whether as before he wasn't really progressing much. When we had our autism assessment before the summer, i tokk some notes of our concerns to help us with the ADI (autism diagnosis interview) and the paed who was asking the questions was often saying 'oh that is good progress!' as we were going through his development for language , interaction,... and i was thinking they are going to say he hasn't got ASD because of the progress he has recently made.

Well they did dx him with autism. Paed said 'even autistic children make progress!'

Hi MustBeTimeForWine. I saw this article a few weeks ago.

"Meet Donald Gray Triplett, 77, of Forest, Mississippi. He was the first person ever diagnosed with autism. And his long, happy, surprising life may hold some answers."

www.theatlantic.com/magazine/archive/2010/10/autism-8217-s-first-child/8227/

Love it too star . I also like the phrase 'relatively normal'. come on, who out there can say that their relatives behaviour is always in the realms of 'normal'? There was also a thread recently where one poster - and i forgot who it was, sorry, wrote that with the incidence of ASD increasing as a % of population, in generations to come, ASD traits may become the norm and 'normal' will be the minority - evolution is at work!

Thank you so much for posting that Stark.
I am struggling with what our recent ASD dx for DD actually means for her.

I feel much better reading your post and CFSKate's one about Donald.

I think I will give up taming tangents

The way I think about it, and I appreciate that my ds has skills that other parents can only dream about for their kids (imagine putting that on the main board?) is this:

There are many challenges in life. No-one wants their child to be disadvantaged from the start and disability usually means they are. But NOT having a disability is no guarantee of a lovely life either, or even a 'normal one'.

We have to deal with the challenges as best we can, and we have to do our utmost to help our children deal with them 'despite' their disadvantage.

Now embracing the tangents.

I hope I don't seem flippant here. This is actually quite a significant mind shift for me.

Mustbetimeforwine, hi

Normal is Highly Overrated, I think (if it exists at all). I absolutely love the bit by Stark above about "normal syndrome".

I'd also say it's important to remember that I grew up without a diagnosis, support, treatment, therapy or anything else. Instead I got bullying, abuse, violence, contempt and sensory hell.

At least a diagnosis gave me freedom to be me (though I still get bullying abuse now and again because some people actually do hate people on the autism spectrum - got called a retard etc etc on another supposedly adult mature site elsewhere recently). And it gives me the right help and support (more or less - I've found ways to get some).

Is my life normal? Well....here I am with multiple disabilities, and a dh who's on the autism spectrum, and a ds who is, and a social care team and a work support team and an autism support dog and I can't live independently. One could argue that my life should be rubbish. On occasion it is. But I mostly enjoy it, even though it's hard work and takes a lot of thinking and planning.

I don't need to be the same as everyone else. I don't need to find a way to be with a 'neurotypical' hubby. I have found out how to make friends (boy, that was a long long learning process and I'm quite capable of fouling up...spectacularly). But people know more about autism now and they are happier to think "oops - Amber's being autistic" rather than

I couldn't cope with ordinary employment very well, so set up my own firm so I can run it the way I can cope with (with lots of supportive people around me). That's the sort of thinking that gets us round the obstacles, and means I can offer employment to others who need it too, and need to work in an ASD-friendly way. It's a totally weird office for 'normal people' but it works for us.

Sod 'normal', in other words. Go for 'a life worth living'. To which the answer is 'yes', with the right thought and support.

Thanks everyone. I'm glad this thread has got some people really thinking.

amberlight, I can't tell you how much I didn't want to use the word "normal", but in the end it really was the only word I could use to sum up how I felt. Can I ask is your autism on the higher or lower end of the spectrum. For example what were you like at 4? (f you can remember) I remember you saying the early years were dark times for you, but do you remember feeling different to most people?

Obviously the main thing is that she is happy and that really is all I want. I just can't bare people looking at her in that way and i'm sure you all know what I mean when I say that way. :(

I'm in the middle. I think doctors and services sometimes forget there's a middle bit, so bung everyone into High or Low, but there's a bloomin' big middle bit where most of us are. My AQ score is very high, my EQ score very low, my SQ score very high, my quality of life indicators are urk if you add in the other disabilities etc etc so definitely middle.

I can't remember being anything less than 10. No idea what I was before that - I only realised I was human when I was 10. Apparently I learned enough things 'automatically' that people didn't notice I was doing it all by rote/just repeating what they said/being very eccentric/rocking backwards and forwards for hours/obsessing over colours and patterns and stuff.

So I can't really answer the question about how I was at age 4. I can't remember being unhappy, if that helps?

But when I realised I was a person...and realised what other people were, it started hurting, because then I realised I was different and didn't know how to make friends etc. And the injustice thing really really hurt: one of the first memories I have at age 10 was listening to Blue Peter's appeal for OXFAM about how some people had no food and water, and trying to donate all my pocket money. My parents thought that was very unreasonable, but I had a built-in sense of 'everyone is equal', which has never left me. If I have food and water, so must everyone else. Makes sense to me.

People on the spectrum are generally able to be ten times more accurate than other people in their specialised interests and skills.
We have eyesight that tends to be three times more accurate
We have hearing that tends to be much more accurate.
Those are useful things, if society respects them. It's not all bad.

Hopefully I can be of some use here. O currently work with adults with LD, and previously with teenagers with ASD.

One particular lad with ASD I worked with had a very bad start in life. He had major food issues as a teen - overeating, stealing - and was massively overweight at 13.

We worked with him on diet and nutrition to help him understand the food choices he made and, when he was 15, enrolled him on NVQ1 in Catering 1 day a week.

Last I heard, he is working as a KP in a pub and still living with his fostermum, helping to care for her ds who received his ASD dx while this lad was still at the school.

He was one of a group of lads who wanted to see a certain film which happened to star a very hot lead male actor. They chose to go on a day when I and my single female colleague were working because they knew that we would enjoy the film too ;)

Another teenaged student pointed out to me that the longer you do something the better you get at it. I have played the piano for 20 years and can sightread to a passable standard, at least for carol singing etc. His point was that, after 15 years of managing his behaviour, he was getting progressively better at it.

HTH

Hi Timeforwine,
my dd is 6 and diagnosed with asbergers. We only got her diagnosis officially this year but I've always known something was different compared to other children. If you get a diagnosis you can get on a national autistic society's 'Earlybird plus' course - I'm sure you'd find that really useful. It gives a positive but realistic view of autism. The course we've just done locally was run by a very experienced speech therapist who really knows her stuff - we picked up loads of advice and I really valued meeting other parents in a similar situation to myself. A school representative is invited on the course as well as parents of the child so everyone can work together using the same approaches.
There's also a very good documentary on the Teachers TV website called 'Asbergers - Oops wrong planet'
(www.teachers.tv/videos/asperger-oops-wrong-planet). Its free to sign up to the site and really helped me see the positives and see dd as 'differently abled' rather than 'disabled' which seems to have more of a focus on 'can't do' than 'can do' iyswim.

Wrong Planet is also a very very popular website for many people with autism, as well as being exactly how it feels - this does seem to be the wrong planet for our particular design!

HI
I haven't read all the posts on this thread just the first few.

My story, I think, is a happy one. My DD was diagnosed with Autism and was asked to leaver her first infant school as they could't cope with her. She didn't talk to adults or most children, didn't look anyone in the eye. Would scream and throw tantrums in class. Would rarely if ever talk in more than one or two word sentences.

This was probably a low in my life. I didn't think I would ever have a normal life or a dd who would fit in. Second low was after two years in a supportive state primary the SENCO told me to think about transition to senior school and that we should think about a special needs school rather than the state senior.

My view then was that I had been deceiving myself and that my dd was much worse than I had thought. So I went round all the special needs schools, put my daughter into a couple of special needs groups, such as swimming, youth clubs with the view that here she would fit in and would find her way. I thought it was really about me accepting that my daughter had higher special needs than I had thought.

Anyway we did all this and it convinced m, and my dd that she wasn't that bad at all. Seeing how sever other children are and the needs that they had was an eye opener. The moment I realised that I was doing my daughter a disservice was after a chat with one of the mums with a son, who, compared to my daughter had much greater needs. We were talking about school and I asked her with special needs school he went to and she told me that he was in mainstream seniors and was thriving. A bit of a shock for me.

Now she has quite a few good friends, is going to stay in mainstream for as long as we can keep her there. And apart from the occasional tantrum nothing really, as far as we are concerned, to worry about.

Saying that the last seven years have been awful but I didn't expect things to turn out so well. All along people have been hinting that things won't be great, that she won't survive the system, that she will be bullied, won't keep up. Won't have friendships.

She has a really good group of friends, some not that desirable ie the oddballs. She walks herself to school, can go to the shops independently.

We took her to a lovely special needs school for a trial. She hated it because it was too small and boring. She loves the hurly burly of a big school. Even though she struggled in year 2 with noise and being in a class of 17. She even went on her school trip for three nights last summer on her own, ie without a parent or helper.

My expectations were either too high or too low depending on what I had been reading. The schools expectations are always too low and it is still is a fight for me to get them to see what I see. Now I can see that she can lead a normal life, she has learned to fit in in her own way. I am very proud of this girl and the enormous steps she has made.