Aargh, feeling alone!

[peppa]

Had another visit from portage and health visitor today, health visitor still standing by her first views (my daughter is just highly intelligent and a little clumsy)!

Portage however do offer support in difficult areas but say she cant be autistic because she is social, however unappropriate it may be!

 

I know dd is intelligent but it doesnt explain away, her inability to recognise emotions, facial expressions, her sensory issues etc etc etc!

 

Today when waiting in corridor to go into nursery she pushed one child over and said 'k' isn't here is she, then turned around and hugged and kissed the face off another child saying 'o' isn't here is she. This happens most days despite all the efforts of myself and teachers, does this sound like appropriate behaviour?

 

Education psychologist saw her in school today but iwasn't given any feedback, apparantly that will be done through portage, so no idea when that will be! They've arranged a meeting for all involved including parents to get together and voice concerns, so hopefully something posotive will come from this.

Still wiating for peadiatricians appointment but weve been told it should be in the next four weeks, can't wait but just hope he listens to our concerns and doesn't fob us off like H.v and G.p have done.

Have a feeling its going to be a fight all the way but i know my daughter and i'll fight all the way to get the help and recognition that she needs.

Sick of feeling patronised when best H.v can say is its probably just the fact she's an only child and maybe because she's tall for her age people think shes older so expect more from her!

A parent knows when something isn't quite right with their child.

 

I sometimes feel like they think im a neurotic mum or ive got munchausen by proxy!

Its so wrong that we should be reduced to feeling like this just because H.vs and G.ps dont listen to us parents!

 

Sorry to rant but had to get out all the frustration and tension im feeling today!!

 

 

Has anyone else been in this position and how did they prepare for consultant peadiatricians oppointment to ensure their voice was heard?

 

Feel like i owe it to my daughter to persist.

[kinky j]

i can totally relate to that, i kind of knew "something wasn't right" with c from very early on and even asked my HV if it could be autism at his 9mth check (when she told me it was far too early to tell.)

it wasn't until he was 18mths and she started to become conserned about his language development the she even refered us anywhere, and even then despite my repeatedly telling her he could distinguish between the sound of a crisp packet, chocolate wrapper or cake-bar wrapper from 3 rooms away (no joke) and his having passed all the hearing tests, she refered us to the hearing specialist

fortunately, the specialist realised c's hearing was fine, actually listened to me and refered us to the peadiatrician. (the specialist was lovely, she was the first person who said that i might be right and what a briliant job i was doing on so little information )

 

You know your child better than anyone, keep pushing til they listen even if it means proving every other posibility wrong! <'>

[Cat]

I would ask these professionals if they have ever heard of the 'active but odd' sub group of autism. It's a really dreadful label but it also exists and maybe the people coming into your home should read up about it.

 

Cat

 

3.2 Impairments of social interaction

 

3.2.1 The aloof group

 

This is the most common type of social impairment. Behavior may include:

 

Behaving as if other people do not exist;

Little or no eye contact made;

No response when spoken to;

Faces empty of expression except with extreme joy, anger or distress;

No response to cuddling;

If something is wanted, carers' hands may be pulled towards the object;

May respond to rough and tumble play well, but when this stops return to aloof pattern;

Seem to 'be in a world of their own'.

 

3.2.2 The passive group

 

Least common group, features include:

 

The child accepts social approaches;

May meet the gaze of others;

May become involved as a passive part of a game.

 

3.2.3 The active but odd group

 

Children of this group make active approaches to others but make that contact in strange ways, including:

 

Paying no attention to the other party;

Poor eye contact although sometimes may stare too long;

May hug or shake hands too hard.

3.2.4 The over-formal, stilted group

 

Seen in later life, this behavior is common in the most able person with autism. The following characteristics tend to be displayed:

 

Excessively polite and formal;

Have a good level of language;

Try very hard to stick to the rules of social interaction without really understanding them.

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[CarerQuie]

I think that the impairment in ASD is in SOCIAL imagination,ie.the ability to put oneself in someone else' shoes.xxs

[ellisisamazing]

Had another visit from portage and health visitor today, health visitor still standing by her first views (my daughter is just highly intelligent and a little clumsy)!

Portage however do offer support in difficult areas but say she cant be autistic because she is social, however unappropriate it may be!

 

I know dd is intelligent but it doesnt explain away, her inability to recognise emotions, facial expressions, her sensory issues etc etc etc!

 

Today when waiting in corridor to go into nursery she pushed one child over and said 'k' isn't here is she, then turned around and hugged and kissed the face off another child saying 'o' isn't here is she. This happens most days despite all the efforts of myself and teachers, does this sound like appropriate behaviour?

 

Education psychologist saw her in school today but iwasn't given any feedback, apparantly that will be done through portage, so no idea when that will be! They've arranged a meeting for all involved including parents to get together and voice concerns, so hopefully something posotive will come from this.

Still wiating for peadiatricians appointment but weve been told it should be in the next four weeks, can't wait but just hope he listens to our concerns and doesn't fob us off like H.v and G.p have done.

Have a feeling its going to be a fight all the way but i know my daughter and i'll fight all the way to get the help and recognition that she needs.

Sick of feeling patronised when best H.v can say is its probably just the fact she's an only child and maybe because she's tall for her age people think shes older so expect more from her!

A parent knows when something isn't quite right with their child.

 

I sometimes feel like they think im a neurotic mum or ive got munchausen by proxy!

Its so wrong that we should be reduced to feeling like this just because H.vs and G.ps dont listen to us parents!

 

Sorry to rant but had to get out all the frustration and tension im feeling today!!

Has anyone else been in this position and how did they prepare for consultant peadiatricians oppointment to ensure their voice was heard?

 

Feel like i owe it to my daughter to persist.

 

 

You need to stay strong and not take no for an answer!!!!

 

For almost two years before my son was DX'd, I was telling/asking HV's to listen to me, but I was told that I was OVERANXIOUS/TOO PROTECTIVE, A PANICKER etc!

 

Was also told my son was LAZY, then he was JEALOUS because I was pregnant with my second child (he was two). He was also labelled as ANTI-SOCIAL!!!

When my daughter was born, my son never reacted to her at all in either a negative or positive way, he just ignored her for about year, until when she able to walk and "get in his face"!!!

 

Even through all this I was still being told to calm down, and that he was definately suffering SIBLING RIVALRY!!!

 

The straw that broke the camels back was that I took both children to a music session at the library, El ran around like a wild animal climbing on the lower shelves, screaming and cackling at random, rocking back and forth and unfortunately he got rough with a little girl there, because she sat on the seat he was initially sat on (I think, IMO!!) and he pushed her, she fell off the chair and banged her mouth on a table edge. As you can imagine I was mortified and upset about the girl (who was fine, btw!).

 

At the end of the session I was on the verge of tears, and the Group leader was also unknown to me at the time a SENCO approached me and very gently suggested that he had SOCIAL COMMUNICATION PROBLEMS!!

 

I was just glad somebody PROFFESSIONAL finally saw what I did. From there on we had a visit from a EDUCATIONAL PSYCHOLIGIST and the ball was rolling we finally recieved an interim dx of ADHD/ASD in August 2005 and then after several appointments and sessions a Confirmed dx of severe AUTISM, GLOBAL DEVELOPMENT DELAY (mental age of 9-12 months was given, though he was actually 3years and 4 months) and obviously NON VERBAL too!

 

Remember you're the one who sees the whole picture 24/7, keep on at the PRO'S till you get a DX. Write down any behaviour you feel is significant and present the info to your HV and be strong!!

 

Good Luck!!

 

Lisa xx

Edited February 7, 2007 by ellisisamazing

[peppa]

Thanks so much for all the replies, its good to have the support.

 

When you feel like no one is hearing you it gets really frustrating!

 

Im going to keep fighting and recording as much evidence of my concerns as possible and fingers crossed when we see the peadiatrician, somebody will listen!

 

A parent commented rather vindictively about my child in the school corridor yesterday so having to deal with that also now! Dont want dd classed as rude or a bully when its clearly so much more.

 

Thanks again to everybody and i'll definatley keep fighting!

[Cat]

Is the Peadiatrician one who has specific knowledge of ASD? It is important that they do have this knowledge and it is perfectly in order for you to find out.

 

I have been where you are and my son was finally diagnosed after a ten year fight and a total breakdown aged 13. I found out the very hard way, as did he, that it is very important that we are seen by people who really do know what they are doing, as opposed to those who think they know what they are doing.

 

Cat

[oxgirl]

Sick of feeling patronised when best H.v can say is its probably just the fact she's an only child.

A parent knows when something isn't quite right with their child.

 

Yes, it was exactly the same for us, peppa. They just kept saying it was because he was an only child and immature. They were reluctant to give a dx because he was young, but it was just a matter of time for us, once he started reception class all hell broke loose and they had to act pretty smart!

 

I sometimes feel like they think im a neurotic mum or ive got munchausen by proxy!

Its so wrong that we should be reduced to feeling like this just because H.vs and G.ps dont listen to us parents!

 

Yes, I felt exactly the same as well. I ended up feeling worried about saying anything because I was sure everything I was saying was being analyzed or that I was being scrutinized in some way.

 

 

I know it's hard for you to see now, but when your dd is older and the dx has come through and she is getting help and you are getting recognition then you will feel validated and feel better, but I do remember how hard and frustrating it was for us when our lad was at this age.

 

Take care and keep up the good fight. <'> <'>

 

~ Mel ~

[peppa]

Hi cat,

i was told the peadiatrician is the best in his field, which i presume they mean autism but im certainly going to check that out. I'll also ask for another referal if this isn't the case.

 

DD certainly falls into the active but odd category, thanks for highlighting these for me i wasn't aware of them, i'll definatley bring it to the attention of all involved!

 

Thanks oxgirl for the support its hard to imagine getting the diagnosis when everything at the moment is such a fight but to hear others have been where we are now and have come out the other side successful certainly gives me encouragement.

[dooday24]

i know how yr feeling only just getting answers now i new reece had problems from a very early age and he is 6 now and we had to fight really hard to be heared dont give up its hard work but we know our children best goodluck lv donnax

[krystaltps]

<'> I know how you feel. The ed psych was one of the first people DS saw on his road to dx. The ed psych decided that because DS has an IQ that places him on the 99th centile and therefore classifies him as gifted that this was where all his problems stemmed from.

The diagnosis team were a totally different kettle of fish, however. Their problem lay in how to assess appropriately in order to take account of both age and his hugely varied abilities (organisational skills on par with toddler, but intellectual skills several years above his chronological age). They accepted from the very first meeting that DS had vast social issues. They were a fanstastic group of people.

I did feel frequently, before meeting with the ADOS team, that I was a neurotic mother, and my only advice is to shelf that feeling.

I said to our ANST (senco-type person, but more powerful) that I didn't want to be "that parent" - the one that they (schools, etc) all moan about, and try to hide in filing cabinets from... and the reply was that I have to be "that parent" as that is the only way to get the help for your child that you need. Sad but true.

Good luck with it all, and don't let em grind you down! <'>

[peppa]

Just recieved appointment today, for the 5th march, its with a consultant community physician in child health?

Anyone any experience with one?

 

Confused as to wether he will be experienced in asd in particular?

 

Think I'll see how appointment goes and take it from there.

 

DD had first SALT assessment yesterday, she has been refered on to local hospital specialist social and communication unit, as SALT believed that concerns were evident. DD will then be assessed by a group of specialists.

 

She's also been refered to OT regarding sensory issues, so things beginning to move forward more posotively, also got meeting with school, portage,hv,ed psyc on tuesday so hoping to get feedback from ed psyc as still waiting!

 

Thanks to everyone who replied, im fairly new to the forum and it was the first thread id started, so a little daunting!!! So good to have support from people who are in the know and truly understand, thanks guys xx