Why is it such a fight?

[Gayle]

Hi,

My name is Gayle and I live in East Lothian in Scotland. Since my daughter was 2, I noticed she was awkward, clumsy and just out of balance with the world around her, oh and she could talk for britain about all sorts, most of it was bizare and unusual. She's now 9 and has battled with the world around her since. Finally (7 years hard slog)she is being assessed for ASD. Unfortunatly I've spent the past 18 years working with Adults who have AD and AS as well as other disabilities. I use the word unfortunately because it is a curse, If I see another 'professional' with that look on their face aaarrrggg! It seems knowledge means, as a parent, you are considered a pain, paranoid, pushy etc. The latest one is a gym teacher shouting at my daughter because she's mucking about and wont do a forward roll properly ( she can't, she has poor coordination and is clumsy)I think I'm perfectly entitled to insist the gym teacher be made aware of her O.T. assessment. She hates gym - I know why! She hates school - I know why, She hates other kids - they are so cruel. She doesn't understand why no-one listens to her, why kids are cruel, why her teacher tells her to stop being awkward etc etc etc.

Why have I written this? I think it's a cry for help. Does it get easier for her? She is an amazing girl and I love her very much. I wish people could see through the hard frowning exterior. I'm tired, (i'm so,so tired) of telling people all the negative stuff. When do I get to tell people about the unique special girl that she is. Her name is Faith and she's amazing!

[bid]

Welcome to the forum

 

It is hard that we have to focus on our children's difficulties when they are going through assessments. Hopefully once you get some answers you will have more opportunities to highlight her positive qualities.

 

I'm a woman with a dx of AS by the way, and have an adult son with AS, Dyspraxia and ADHD. I also work with children and young people with special needs, including ASD.

 

Bid

Edited January 21, 2011 by bid

[smiley1590]

by being clumsy having poor balance hating PE physical sports has your daughter been assessed for dyspraxia??? which is common to have both A.S. and dyspraxia i am both! and a female as more commonly seen in boys than girls!

 

XKLX

[Gayle]

Hi,

 

No she hasn't, will flag it up though. Thank You

 

Gayle

[munty13]

Hi Gayle. Unfortunately, life is probably going to be more of a challenge for Faith, as it is for anyone with AS, but I think she will become a better person for it (not that Aspies have taken the market in challenging lives away from NT people!). No doubt, observing Faith take-on the obstacles in her path, will greatly affect and challenge you too!

 

Being an adult with AS, I watched something on Youtube the other day which inspired me. It is the story of Danny. He has AS. His childhood was very sad, but he now seems very much at ease with himself, and his past. I hope his story might be an inspiration to you too.

Edited January 21, 2011 by munty13

[smiley1590]

yeap wouldn't hurt to mention in conversation as sometimes is just put in with A.S as alot very closely related to A.S anyways but is seperate condition though still on continuing spectrum as what you have described and explained could link to the possibility of dyspraxic difficulties /struggles which may need further investigation support etc i'm surprised dyspraxia hasn't been mentioned to you with her before as so clumsy dislikes PE physical stuff all adds up to bigger picture which may lead on to dyspraxia.... this may what be going on with her! so i say does need looking into more closely and checking just incase it is!

 

here web links with information on the medical condition dyspraxia signs symptoms etc hope this helps:

 

http://www.nhs.uk/conditions/Dyspraxia-(childhood)/Pages/Introduction.aspx

 

http://www.dyspraxiafoundation.org.uk/services/gu_symptoms.php

 

http://www.cks.nhs.uk/patient_information_leaflet/dyspraxia_childhood

 

it isn't uncommon find one spectrum condition exists then discover another lurking underneath 'everything' too hidden i was opposite officially diagnosed with Dyspraxia ( Clumsy Child Syndrome) and then years ,years later A.S!!!

 

XKLX

[Gayle]

yeap wouldn't hurt to mention in conversation as sometimes is just put in with A.S as alot very closely related to A.S anyways but is seperate condition though still on continuing spectrum as what you have described and explained could link to the possibility of dyspraxic difficulties /struggles which may need further investigation support etc i'm surprised dyspraxia hasn't been mentioned to you with her before as so clumsy dislikes PE physical stuff all adds up to bigger picture which may lead on to dyspraxia.... this may what be going on with her! so i say does need looking into more closely and checking just incase it is!

 

here web links with information on the medical condition dyspraxia signs symptoms etc hope this helps:

 

http://www.nhs.uk/conditions/Dyspraxia-(childhood)/Pages/Introduction.aspx

 

http://www.dyspraxiafoundation.org.uk/services/gu_symptoms.php

 

http://www.cks.nhs.uk/patient_information_leaflet/dyspraxia_childhood

 

it isn't uncommon find one spectrum condition exists then discover another lurking underneath 'everything' too hidden i was opposite officially diagnosed with Dyspraxia ( Clumsy Child Syndrome) and then years ,years later A.S!!!

 

XKLX

[cmuir]

Hi

 

I live in Midlothian and I think services, support, etc is very much a lottery postcode in the Lothians. In a nutshell I think some things become easier - the older the child becomes they learn management strategies and ways of coping. However, I've found with my son (whose 9 and has Aspergers) that other issues crop up, particularly of the social sort. I also think that irrespective of whether a child is in mainstream or special school, they're will also be issues (though I think more likely in mainstream, as I've found/am finding). Fact is, unless professionals have a great deal of direct experience (not just out of a textbook) working with ASD kids, or even have an ASD child of their own, it's inevitable that there's some degree of a lack of understanding, etc. Sorry, that's all perhaps rather negative, but in my view, realistic. There are times when things seem to go well for a few days or weeks even, then wham! However, that said, like you, I value my son as a perhaps. He's unique and somewhat of an enigma, but he's truly amazing. There's not a day that goes by when I'm not blown away by something he says or does - I think he's grossly underestimated (by me as well as others at times).

 

Is your daughter in mainstream? Does she have a Learning Assistant? Does she have an IEP? Sorry for firing questions at you.

 

Chin up!

 

Caroline.

[auldreekie]

Hi Gayle, I too am having problems getting help. I am assuming you are being referred to the same place as I have been (Rillbank Terr) and would be very interested in hearing about your experience there. Could you please contact me - I'm desperate!! Thanks

[mamabear]

It has been a fight for us also since my son was 2-3 and his behavioural problems began to emerge. We finally got a diagnosis of ASD in December but people like his schoolteachers are still having trouble understanding he has acces needs not that he is nasty. they have been blaming his behaviour on me for ages and can;t seem to snap out of it. this is despite Naruto being a twin and his twin sister in same class is exemplary, they seem to think I must have by miracle managed to parent them differently!

 

I feel like things should get easier now he has a diagnosis but things are a long way from settled yet while we work out how to meet his access nmeeds and how to stop his violence and destruction.

 

my son is in manstream with an IEP and a full time support assistant, but he continues to remain at risk of being parmanently excluded. it is very important to me that he stays in mainstream though :-(

 

mamabear

 

 

Hi,

My name is Gayle and I live in East Lothian in Scotland. Since my daughter was 2, I noticed she was awkward, clumsy and just out of balance with the world around her, oh and she could talk for britain about all sorts, most of it was bizare and unusual. She's now 9 and has battled with the world around her since. Finally (7 years hard slog)she is being assessed for ASD. Unfortunatly I've spent the past 18 years working with Adults who have AD and AS as well as other disabilities. I use the word unfortunately because it is a curse, If I see another 'professional' with that look on their face aaarrrggg! It seems knowledge means, as a parent, you are considered a pain, paranoid, pushy etc. The latest one is a gym teacher shouting at my daughter because she's mucking about and wont do a forward roll properly ( she can't, she has poor coordination and is clumsy)I think I'm perfectly entitled to insist the gym teacher be made aware of her O.T. assessment. She hates gym - I know why! She hates school - I know why, She hates other kids - they are so cruel. She doesn't understand why no-one listens to her, why kids are cruel, why her teacher tells her to stop being awkward etc etc etc.

Why have I written this? I think it's a cry for help. Does it get easier for her? She is an amazing girl and I love her very much. I wish people could see through the hard frowning exterior. I'm tired, (i'm so,so tired) of telling people all the negative stuff. When do I get to tell people about the unique special girl that she is. Her name is Faith and she's amazing!