i think im going give up now for a while

[rainbow queen]

<'> thanks to everyone whos helped me and for all the insight ive gained

but just had meeting with senco and everyone is saying its not as-got camhs on mon so expect they will say same,i think i should just trust now and give up with it all,as i think they had enough of me pushing them,its actually back firing on me more so i guess it must be just behaviouril probs he has.

senco said that the literal stuff with lang is to young to say its as,as all kids do this ect... and if its still present when older they may look into it .

im totally gob smacked as they told me my son rides pedal bike at school and jumps and all the rest of it -in fact hes quite perfect so they cant see any probs-she even couldnt see why he should have an iep-although they done another.so thats it i cant deal with it anymore-when i read and hear about other people getting help it just upsets me more that im shunned.

 

but ive learned alot about aspergers which is good as my nephew has been dx with it and its helped me understand him more.

[phasmid]

RQ, you need to do what you feel's best for you and yours. You know we'll be here if you need us. Please point your nephews parents our way too. Come back and see us from time to time whatever happens. Like to wish you and yours all the very best for Mondays meeting and the future. Take care.

 

Phas

[Brook]

All the best rainbow queen. <'> <'>

 

I really hope that you get some answers on Monday.

 

We will all be here if you need us. <'>

 

Take it easy.

 

Brook

[jen]

Just wait and see what the other assessment reveal. Diagnoses do change over time as well. AS you say you have learned things here so that is good. Take it step by step but saying that the parents are normally right.

 

Jen

[Flora]

You have to follow your instincts. If you think they are wrong, and a mother's instinct is invariably spot on, then I would say don't give up. There have been many many times in the past when I've felt like just giving up. William was dx just before his 9th birthday. However, I'd known since he was a baby that there was something different. Once during an appointment with a paediatrician (for a completely different problem) I actually begged the consultant to assess my son for 'something'. At the time I knew absolutely nothing about autism, and hadn't even heard of AS, but if I had I would have recognised this in my son. At that time the consultant just told me he was a perfectly normal toddler and I should just relax and stop worrying.

 

I played a waiting game for years, until the diagnosis was inventibable.

 

You are right to ignore the SENCO. These people are not experts in ASD. My son was dx by several professionals and yet his HT/SENCo at the primary school refer to him as 'having aspergers traits',,, even though he exceeds the dx criteria.

 

By all means give up on your fight with the school, but don't ignore what your gut tells you; go with your instincts and trust yourself; whereever that leads you.

 

Don't let the B's grind you down rainbowqueen.

 

Lauren

[asereht]

Take Care RQ, please let us know how you get on on monday.

 

 

You need to do what you think is best but parents are not usually wrong.

 

Pop in when you need us or just to chat.

 

Theresa

[UltraMum]

All the best for Monday - follow your instincts

 

<'> <'> <'> <'>

[stresshead]

Hi Rainow Queen,

thought I would let you know that my son is 6, rides a 2 wheel bike, has some mixing ability (although usually with adults or children younger than him who will follow his lead) He is near perfect in school (although hates going in the morning!) Also participates in PE (although he says doesn't like it!)

He seems to give the illusion to teachers etc that he fits in, until I pointed out things in his personality, and mentioned his quirks and the fact that he was in the middle of dx, his teacher started to "PAY ATTENTION" and actually "NOTICE" that he WAS different to his peers.

He has a DX of Aspergers now, which I knew all along, I would have been surprised if they had said that he wasn't!

At home I struggle getting him dressed, his personal hygeine (teeth, wiping bottom etc), loads of literal thinking, catorgorising people into places, meltdowns, not understanding gestures, echoalia, sreeching etc. etc. etc!!!!!

 

School is very structured, he conforms to this rota! and would, unless observed, go unoticed.

 

My son had Speech and language therapist sitting at the back of the class observing him (she knew what to look for) all of the children thought that she was a student teacher, she also spent time walking around the playground observing him, again all of the children thought that she was staff. On another occassion she had lots of 1 2 1 talking and getting to know him and find out how he interprets information.

Have you requested this, or has it been offered? My sons language is above average, he is "like a little professor!" and can talk on a par with many adults, so I thought that it was odd to use S&L therapist, but they can determine how the language is processed, inability to see the bigger picture etc.

 

I knew from when my son was really young that he was different, I have another 2 children 16 & 18 and he was sOOOO different. My sister noticed traits in him first, she is also dx AS, (my mum went to DRs when she was small re. autism and they told her that the child was just a normal kid 20+ years of non-conformist behaviour, confusion and not fitting in gets a DX of AS!) So to me early detection was important to avoid this happening to my son.

 

Noticing the "oddities", similarities and traits in my son, I was determined for him not to have the confussion that my sister had and went for a referal. and hey presto!

 

Please don't give up, even if it's not an ASD, I know through my sisters misery growing up. When she got her DX so much changed there were answers to her behaviour, after a long time and a lot of emotional damage. She still has her quirks but is a lot easier to understand.

 

So, there are 2 combined stoties of "mothers instinct" one quite sad and one hopefully going to be a lot more positive!

 

Good luck A

ps how old is your son?

[neda]

Rainbowqueen

 

Have some of these <'> <'> <'> .

 

I'm just going down the route of ASD diagnostic team just now, but this is after the EP told me that he doesn't think he is on the spectrum and definitely would not refer him on to diagnostic team. Speech and language therapy have referred him on as they disagree with EP that speech articulation is the cause of all his social and behavioural problems.

 

Its pretty much been a gut instinct with me from when he was about 10 months onwards. He seems capable of day to day activities, its his speech, social interaction, behavioural problems and meltdowns which continually make me think its not just down to bad behaviour. So far this week I've avoided been hit by a screwdriver and a sharp knife which he threw.

 

This is very similar behaviour to my 16 year old nephew who behaved like this and although spent time with psychologists/psychiatrists/anger management/behaviour support etc... nothing ever came of it. He is now 16, left school without any qualifications, was in residential school for 6 months and local community group for kids excluded from school. Luckily for him he has managed to find himself a job but struggles because of his social difficulties. I'm determined not to let this happen to A who is 4 years old just now.

 

I'm sure you are feeling very confused right now, wait and see what CAHMs say. Just remember that we are all here for you.

[Paula]

<'> Rainbow queen

 

I eventualy gave up trying to get a dx for my son.Ive never had one.

 

 

 

BUT i know hes AS so does his school and anyone who spends regular time with him.

 

My son used to ride a bike at nursery,play in the sand and interact with other children too.They dont all sit in a corner doing nothing this is a popular myth that drs use to get out of dianosisng what most of them know nothing about.

 

Getting of the dx treadmill helped me.I nver got back on it.

 

My son is statemented,attends a special school ,and i get DLA.I didnt need a dx to receive the help he needed.So go through other channels.

 

Take care.

[cmuir]

Hi

 

I'm a big believer in gut feeling. I also hear others say that mother's know instinctively when something isn't right ? I believe that. I have a 4 year old whom I believe has AS. I've had to battle to get referrals, etc and constantly have to justify myself, but in my heart I know that headbanging walls, the horrendous tantrums, the odd conversations, crying for no obvious reason (the list goes on) ? I know this isn't normal. I'm sticking to my guns. Robert can ride a bike, etc, but that doesn't mean he doesn't have AS. I've also had people tell me that Robert is just badly behaved and I have to be firm (I keep reminding myself of the 17 reports that say otherwise as well as reminding myself about all the odd traits). Try not to lose heart. If you know there's something not quite right, fight tooth and nail to get a diagnosis. Remember specialists clock on a 9am and go home at 5pm, they have no idea what our lives are like! I know that it feels like one step forward and two back ? but I know I'm getting that little bit closer! Don't give up!

 

Regards

 

Caroline.

[Suze]

Hi marie, senco,s don,t always see all our childrens quirks, I would,nt take her feelings on your son as gospel.My son at 4 would,nt have been given a dx , he appeared very immature and was the youngest in the school year, his school put all his problems down to this.At home he just played in his own little world, when he was 7 things begin to slide , his peer group matured he did,nt, he had issues with self esteem, confidence and became depressed.At this point he was referred to camhs and he was dx.Go to camhs with an open mind if you see the same team we did they are very friendly and approachable, if at this stage they don,t feel he fits the criteria I,m sure if further problems arise as he matures they would definitely look at things again ,pm me and we can chat about monday, SUZEX.Please let us know how you get on.

[curra]

Hi RQ,

 

I don't know how old your son is, but many AS children are diagnosed later, mine was dx when he was 10 when all of a sudden he showed the "classical" signs because he was under a lot of stress due to moving to another town and school. Several GP had told me before that there was nothing wrong with him, same thing said the head teacher, senco etc. When he was in primary 5 his teacher constantly told him off for being "uncooperative" but no one would say anything about a dx, he was considered "excentric" and a "loner", and of course "spoiled" because I protected him. They even said that his odd gait and some mannerisms were simply clownish behaviour! He could communicate well (apparently) because he has excellent memory for languages and since he was poor at maths he was considered lazy. Even now that he has a clear dx of ASD there are some teachers who think that he's lazy because since he's so articulate he should be able to do this and that too. The thing is that his communication difficulties showed more clearly later at an age when it became more evident how literal he is compared to his peers who made friends, socialised, played together at break while my son talked only about his interests and was always alone.

 

Keep your eyes open and don't give up but give yourself a break. It helps to keep a diary of tantrums, and all kinds of observations, toiletting issues, unexplained aches, difficulties with other children etc. Follow your instinct.

<'> <'> <'> Curra

[jen]

Educational Psy, Senco and GP can not diagnose nor say it is not ASD or anything else. They can give there opinion but has we all know all children act differently with different environments and with what is going on.

 

The Psychatrist put all this information together with regular observation of the child. Documented information from the parents regarding the birth, how the child was as a baby. How the child is at home. How the child communicates and plays in the home situation.

 

 

Jen

[Tez]

Hi RQ,

 

Wait and see what CAHMS have to say on Monday before you make any firm decisions, hopefully they may surprise you and back your feelings. But I do agree that you have to do what is best for you and your family and if CAHMS say it's just behavioural issues maybe it would be wise to play it their way for a time, but never let go of your instincts and if later you still feel its AS and you need a dx you may feel stronger and more able to fight for it, plus you will be able to say that you tried their way and it didn't work.

 

A's been looking into studying philosophy and has left some books open on the table. Strangely he's highlighted this quote,

Everything we hear is an opinion, not a fact. Everything we see is a perspective, not the truth. Marcus Aurelius Meditations on Stoic Philosophy

 

Take care, and let us know how you get on Monday.

Edited March 11, 2006 by Tez

[kirstie]

Rainbow queen,

What is that all about, he can ride a bike and jump........... so that means he can't have an asd?????? Lewis was always able to ride a trike at nursery and would whizz around the playground like a bat out of hell! I would trust your gut instinct and stick by your beliefs.

I hope your meeting goes well and your not feeling too disheartened.

[JenRose]

Rainbow queen, dont give up you as a mother know your child the best, not the "experts" who think they know it all.

My son M is 9 and we have been down the dx route and have ended up with "complex needs with traits of AS"?

We are not accepting that dx as we know that he DOES have ASD and are taking him to see a specialist.

 

Anyway when M was born very early i knew that something wasnt right, i took him to doctors, HV,s you name it and i was told that I had the problem and was offered prozac.

 

9 years later and the same problems are still here, i have been right all along, just because they are saying no now doesnt mean that you are wrong, the specialist that i spoke to the other day told me that rarely are parents wrong when it comes to their children.

 

<'>

love jen

[rainbow queen]

<'> many thanks for your replys

i will see what happens at camhs tomorrow-let u know

about the bike thing ect.....i was trying to say how unmobile he is at home ect.....as i read as kids are ....running odd ect... which my son dose

but school have told me and ot hes fine mobilty wise which i cant understand because he will not get on and pedal little bike at home

but his teacher has said shes seen him on bike and everythings like normal

 

the senco lady was telling me i have to trust the proffesionals involved as they know what to look for regarding as,but she also said aspergers takes long time to show up....then get this she said her nephew has it and hes going through geting dx at age 43

 

which is exactly my point i dont want to wait till 43 to be told he has it

 

anyway hes 5 in june

i think they think its just behaviour issues and they are with me the mother

in fact everything i told her she had a storey for to pass me off with

as im a quite person-i take critism bad and start feeling everyones agaisnt me-which in turn makes me look more like its me with the issuses[which i admit i have some-most regarding men ]

 

so im just going sit back a bit see what happens

i got told about parenting course and i told her ive been on one -im not doing another

told me to do a golden moments book with him and all the rest...........which i will try........just to see........and penny charts...........

she also refused me home school book

anyway it starts getting at you after a bit -its getting thats all i talk about so im going try to chill a bit

 

talk soon RQ xxx <'>

[stresshead]

Hi RQ,

in reception, my sons teacher was the SEN, and she didn't think that there was anything wrong with my son and spent 5 days out of 7 with him. It was me who put it to her, and I said that I wanted him refered. I think sometimes with all of the staff meetings, pressures from ofsted, looking after another 30 kids etc. unless a child is particularly NOTICIBLE they will go unoticed until it is pointed out. I know that my son blends in quite well at school, except at playtime. It has took just on 2 years for DX.

[Guest hallyscomet]

Take care RQ listen to your instincts, as many parents will tell you our ASD are on best behaviour at appointments and save their worst for home. It takes a professional experienced with ASD to know what to look for.

 

When my son was diagnosed with Autism at 4 I went into denial, he was really sick with a flu and not his usual self and I was referred to a Paediatrician even though my boy was sick the Paediatrician said to me do you mind me asking a series of questions, he could tell my son has ASD just from looking at his eyes, his inability to make eye contact.

 

So you get a second opinion if in any doubts - a Paediatrician is our first point of call over here. Perhaps its worth one more appointment.

 

Sending you lots of these <'> <'> <'> you are your childs best alley, tell these "others" to walk a mile in your shoes.

 

 

Hailey

[DaisyProudfoot]

Hi RQ

 

It's the day after tomorrow. What did CAMHS say?

 

Please don't give up fighting for your son if you don't get the dx - if he has behavioural problems similar to AS then the insight you receive here may help anyway.

 

We first suspected Martin had problems when he was about 2 and a half years old, for years and years we were told there was nothing wrong with him. He got his dx for AS last year, just after his 9th birthday.

 

Looking at him you'd never know he had an Autistic Spectrum Disorder - he met all his milestones, rides a two-wheel bike (unlike his 13 year old dyspraxic brother), has a few friends at school (though not at home) but as he's gotten older more and more AS traits have become more obvious. His worst is the meltdowns which are now becoming more frequent at school too, his literal thinking, his complete LACK of social skills and his problems with personal proximity.

 

Sometimes the problems just take time to show fully. If you go with your instinct it'll probably be correct.

 

Take care <'>

[asereht]

Hi RQ, just wondering how you got on last monday hope things are good with you.

[rainbow queen]

<'> hi yes it went quite well with camhs

they listened to me and was quite understanding

my son goes with me on next appointment in april

we did talk about aspergers and im feeling bit more hopefull that they are listening now .......so we shall see.....

also had appointment thur with consultant and i took my sister and hubby along to talk about there son who has been dx as he took down his details and is going to check his medical notes too-as my sister feels my son is alot like hers when he was younger,,,,,,,so its looking lot better so far.....................

[asereht]

Glad things are looking more hopeful.

[Kathryn]

Hi rainbowqueen,

 

It sounds as though the CAMHS appointment went better than you expected - what a great family you have to support you. I hope this marks the beginning of better understanding from the professionals, and some firm action at last.

 

I can echo the others - don't give up, and trust your instincts. My dauhghter was dx fairly easily at 15, but ten years before, the signs would have been very subtle and we would have had a similar struggle to get people to understand.

 

K x