Hiya

[unicornspirit]

Hey guys, i am new here. Currently awaiting diagnosis for my 4 1/2yr son who, so far, the peadtrician has said has "some traits of aspergers syndrome" erm.. i am really here because i feel so alone. i have people telling me that there is no such thing as aspergers, and that it is really just an excuse 4 bad behaviour so i feel i can't talk 2 anybody about it as all they want to do is jugde me, my son or "give advice" on how to disclipine him

 

i have a little girl who is 2 yrs old. The drs say she isn't showing any signs of aspergers.

 

I feel like i am banging my head against a brick wall.. (spots perfect icon..)

My son can be such hard work, the school holidays are a nightmare! i can't drive, i can't get anywhere as we in the middle of nowhere, i knw no1 here, i have no family support so it's isolating and boring. There is nothing for kids to do here, so how can i keep a hyper child under control without upsetting him by walking too far etc? (the town and drs is a 45 min walk each way) He likes to know what i have planned for the day, but the thing is i never have anything planned? 0h yeah we will play, make somethings and watch tv? that isn't interaction surely?

When he goes back to school he'll be all upset again as it has become a change in routine again.

 

Day in day out, with no break from the kiddies is hard, but i wouldn't change the for the world. I need a diagnosis.. how long does it take?

 

sorry guys, i am not usually this miserable H0NEST!

 

[unicornspirit]

0h and H0000WWWWW can i get my son to eat nutritious things? he is S0 fussy and will literaly throw up. He hates all meat. He hates pasta sauces. He likes the chip smiley face thingys but will not eat many.

[pearl]

Hi & welcome. You won't find anyone saying theres no such thing as Aspergers here

[cmuir]

Hi

 

I can totally relate to how you must be feeling. Everything you've said rings so many bells!

 

My son was 18 months when I realised (felt certain) that something wasn't right. Despite repeatedly flagging things up with our GP and Health Visitor, I was basically ignored. Finally, when R was aged 3, I'd well and truly had enough of GP and HV telling me to be firmer, it was just the terrible twos, recommending I worked part time instead of full time, etc. By that stage, I had a strong feeling it was Aspergers. The more I read about AS, the more certain I felt - still GP and HV categorically ruled this out. Despite this, my GP and HV only made a referral when I lost my temper and told them I was sick and tired of being treated like a neurotic mother that can't cope. It was only then, after much anger/upset/frustration, that they finally made a referral. I kept diaries of events eg birthday, christmas, family outings, etc that ended in disaster one way or another - eg, at christmas R would stack wrapped presents up behind the dining room table, but would happily open unwrapped gifts, he tried to hit a shoe shop assistant that touched his feet, if I took a different route to the local shop, all hell would break loose, etc. I provided copies of parts of the diary to the specialist in advance of appointments (to give them time to read it). Sadly, I must confess that it was a further year and a half (so all in all 3 years) before we finally received a formal diagnosis of AS for R. During that time, we were passed from pillar to post and it felt like we were living in a goldfish bowl - there were numerous assessments on R and both myself and my husband were 'assessed' too (understandable I guess - when a child behaves out of the 'norm', then I guess parents parenting skills or lack of are looked at). Psychologists, Speech and Language Therapists, Paediatricians, etc were all involved. Some of whom would see R on a good day - he'd hold things together for 20 mins, then behave like someone possessed before and after their arrival! It got to the point that most of the reports said 'R is a very complex boy', but there was nothing definitive that pointed to AS. By sheer chance, we got an appointment with a consultant and after having seen R on one occasion (he was given an ADOS assessment) and coupled with a pile of reports, she gave R a formal diagnosis of AS at the aged of 4.5 (apparently NAS say the average age of a diagnosis is 8/9).

 

Of course, family members, friends, other parents, etc were on the whole unsupportive and they just didn't understand. General consensus seemed to be that I was too soft and R was simply a 'brat' that needed a good smack. I got to the stage, even though it was incredibly hurtful, that I had more than enough to cope with managing R that I realised he was the one that mattered - the gossip brigade that would stand at the school enjoying the 'entertainment' (R kicking off big time) became irrelevant. I recall one morning when a teacher came over to me and said that R shouting that he wanted me dead (in front of everyone) must have been very hurtful. I replied by saying that I didn't believe R fully understood what he was saying and in fact, other mums standing seemingly enjoying the entertainment was shameful. Must say, that was a real turning point!

 

I found the whole diagnostic process massively stressful and frustrating. I must say that I'm not entirely in agreement with people self-diagnosing, but rather people who have a strong hunch, have every right to say 'I think XXX may have an ASD'. I expected my GP and HV to be supportive and expected them to be able to recognise some of the signs and make referrals, instead they were insistent that R didn't have AS and therefore prolonged the whole agonising process. Therefore, I'd cautiously say that sometimes health care professionals do get things wrong. It's therefore important to persist and not give up if you're certain something's not right (I'm a big believer in gut feeling/mother's instinct). In addition, I think the older a child becomes, the much more obvious the differences become.

 

Keep your chin up and don't give up.

 

Caroline.

[skye]

There are a couple of parents at my daughter's school who think ASD's and ADHD etc are all just made up. One said "Oh she's right, bite her back is what I say". There will always be ignorant people who don't believe in things because they have absolutely no knowledge about them. I am sure they wouldn't be saying that if their own children had even a few of the problems that ours have to cope with everyday. Don't you worry about those people. I was given some cards from my Educational Psychologists that I have found very useful in these situations. It is a business card from NAS that says:

"This young person has Asperger syndrome

* Asperger syndrome is a developmental disability that affects social and communication skills.

* People with Asperger syndrome may behave in unpredictable ways as a result of their difficulty in understanding language and social situations.

* Please help by being understanding and showing tolerance.

For further information please contact the National Autistic Society" and it provides the phone number and web address.

I have only had to give a couple of these out, but I was happy to have them when my daughter flipped out on a lady for standing next to her in the que, shouting at her and accusing her of trying to break her balloon. I think they are also good to hand to people who want to act like it is just something that you have made up to excuse your children for just being naughty.

I believe these cards are available to purchase on the NAS website.

Also my daughter will only eat things with cheese in. I am trying to get her to eat healthy and occasionally I sneak in some veg. She usually spits it out all over the place and freaks out about it though so good luck. If you figure out how to make him eat right, let me know too! Welcome, Skye

[MandyB]

Hi there, your little chap sounds a bit like mine! He's nearly 5 and the day to day can be so hard, isolating, boring, stressful etc etc. And he has a little brother too who seems to be the focus of his most negative behaviour! Mine's started mainstream school in September and that's a huge relief because he's tired at the end of the day and calmer too. If you can afford it (!) try occupational therapy, they can help with things to use up his energy and meet some of his underlying sensory issues needs if he has them (food is a biggie in this department so chances are he has others too!). Mine now loves spinning round ten times each way on an office chair. He loves it and is calmer after! Weird but it works!

 

Anyway I know this isn't much to offer in terms of help but just to let you know lots of people will understand, you just have to find them! Try the NAS first for local groups. And push for that diagnosis! If GP not helping try Health Visitor or local pre-school support team (if he's not in reception already?).

 

Thinking of you and understanding!!!

 

Best of luck

Mandy B

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[NickyB]

Hello and welcome

 

Oh, and I would agree with all that's been said above !

 

Nicky <'>

 

[Kathryn]

Hi unicornspirit

 

Welcome to the forum

 

It's a good place to let off steam when you're feeling frustrated and isolated.

 

K x