DS has been diagnosed

[chowes]

Well after a long, long wait ds (who is 8yrs) has bee diagnosed with AS. He was diagnosed with Dyspraxia last year.

Both dh and I are both feeling shocked and confused as to what this really means and I will be searching the dibb for info as I am sure there is alot of info on here.

Any good places to get info or books to read please can you let me know.

Thanks.

[TinselAngel]

Just realised I misread your post so the stuff below relates to dyspraxia not AS, but hope you or someone else will find it helpful so I'll leave it in place.

Try www.dyspraxia.org

Our DS1 (11) is dyspraxic and I felt the same shock when his teacher first alerted us to it - he had just gone into yr 3 having moved to a new school when we moved house.

In his case it's only mild, don't know how much your DS is affected, but for our boy it's mostly
a) handwriting difficulties (poor presentation in his schoolwork)
b) organisation difficulties - he's prone to forgetting stuff all the time and has difficulty following more than one instruction in sequence.
He also takes things very literally and certain metaphors and jokes are completely lost on him. He's a very messy eater too.

The dyspraxia.org site has lots of info to help you, and check out parentcentre.gov.uk/forum - there is an SEN forum on there, and you might be reassured to read how many of the parents posting in the Gifted and Talented forum also refer to their dyspraxic offspring. It seems it's very common for dyspraxic children to be very bright (ours is!).

Above all, don't panic - there is lots of help available, and your son's school can do many things to overcome his difficulties - little things like making sure he's facing the front of the class will help enormously when he's copying down work from the blackboard. You should also be able to sign him up for occupational therapy sessions with your local health authority, and the occupational therapist can make lots of recommendations to help your son in school and at home.

Good luck and best wishes - it does get easier with time, and it's much easier to cope when you know what you're dealing with.

[Mishka]

Sorry I can not be any help with his diagnosis but as a mum I would like to send you {{{{{{{hugs}}}}}}}}}}

[scottishwee35]

Well after a long, long wait ds (who is 8yrs) has bee diagnosed with AS. He was diagnosed with Dyspraxia last year.

Both dh and I are both feeling shocked and confused as to what this really means and I will be searching the dibb for info as I am sure there is alot of info on here.

Any good places to get info or books to read please can you let me know.

Thanks.

Hello

My name is Deborah, I am deaf and my husband & daughter are deaf too. My son Keith is hearing. We find out that he have Dyspraxia after my big an operation. That was 3 years ago. At First, we thought he was so LAZY boy then my father in law was an interpreter and he went to leisure one day and realised that match to my son who have problems just what Tinselangel said:

his case it's only mild, don't know how much your DS is affected, but for our boy it's mostly
a) handwriting difficulties (poor presentation in his schoolwork)
b) organisation difficulties - he's prone to forgetting stuff all the time and has difficulty following more than one instruction in sequence.
He also takes things very literally and certain metaphors and jokes are completely lost on him. He's a very messy eater too.

That my son who have very same problem.

Doctor will give you the details where to contact at. We have very good specialist doctor at hospital, she label Keith that he have dyparaxia.

At First, we were very upset but now trying our best.

I am sure you will get lot of help.

I am reading the book now called DYSPRAXIA - The Hidden Handicap by Dr Amanda Kirby. Perhaps you could buy it from the shop or go to library and have a read it. This book is helpful but mostly upset me too.

Take Care

Scottishwee35

[Britmummybites]

Which one is it you want info on as to me as the AS is recent, that it's that. Is that short for Aspergers syndrome . it's a "mild" form of autism.

http://www.asd-forum.org.uk/forum/

or

http://www.nas.org.uk/

[ali-s]

My 11 yr old has aspergers. Getting a diagnosis( when he was 4 ) was a relief as it just confirmed what I already knew. Could you view your sons diagnosis as something positive ? Remember he's exactly the same boy as before he was 'labelled' but now it should be easier to find out how to help and understand him. I read every book the library had on offer - Asperger's syndrome by Tony attwood was helpful, there was also another - written by a woman who has AS - can't remember her name at the moment, but it was unusual - someone else may know ? and that was very interesting as it explained things from her point of view. All aspergers kids are different, but the main points with my son are ; keeping instructions short and simple - don't overload him with too many ! , constant reminders of what he needs to do/ should be doing - he's very easily distracted and can be very forgetful ( unless it's useless trivia - then he has the memory of an elephant ! ) though he's not stuck on routines, he likes to know well in advance what is happening when, keep conversation/ explanations fairly simple - his reading age is way above his comprehension age - this seems quite common amongst AS kids - they can read the words - but don't know what they mean ! , I have to explain feelings/ emotions to him - he's useless at reading body language/ tone of voice and has little empathy with others. Your son may be similar, but as I said - he's just the same as before - only now you'll be better prepared for coping with him.

[TinselAngel]

Many of the symptoms of AS are common to dyspraxic children, I particularly recognised the 'memory of an elephant' for useless trivia like knowing every single episode of the latest series of Dr.Who for example, or every cheat that's available for his favourite ps2 games (funny how the co-ordination difficulties have absolutely NO effect on their ability to use a PS2 controller - even the OT commented on this !). As Ali says above, a diagnosis can be a relief if you've had suspicions for a while that something was not right.

In milder cases, like ours, it can be more of a shock because you've maybe just thought he's "a bit messy" or "his handwriting isn't the best" as we did.

Best advice is to make sure that your GP, School, OT service and maybe the school's educational psychologist are all on board and willing to help. (sometimes dyspraxic children have issues with social skills - ours doesn't make friends easily) . We were very lucky as the school spotted the problem and were very keen to help.

Just remembered, if he's got handwriting problems, I can recommend a very good pen - the Stabilo S'move, which really helps our DS. They are readily available in many high street stationers. It's kind of 'banana' shaped with little dents where the fingers should go for correct grip. My DS loves using his, and his writing is so much better than with an ordinary pen. Writes like a rollerball.

If you want to ask anything specific then PM me - I'm checking DIBB regularly as we're in planning frenzy mode at the mo.

[TinkTatoo]

I can understand how you and DH must be feeling shocked :(

.....Could you view your sons diagnosis as something positive ? Remember he's exactly the same boy as before he was 'labelled' but now it should be easier to find out how to help and understand him........

We have DS (10) who has autism and DD (9) who has AS and what Ali said makes sense. We found it easier to cope with once we got a diagnosis as we realized the reasons behind some of their more bizarre behaviour and made more allowances for their needs.

The links to the web sites are worth checking out as is the Tony Atwood book that Ali mentioned

....there was also another - written by a woman who has AS - can't remember her name at the moment, but it was unusual - someone else may know ?......

This book was written by Temple Grandin (http://www.templegrandin.com/) and is another good read

[loadsapixiedust]

Sending {{{hugs}}}. Getting a diagnosis is a bittersweet experience, a lot of emotions to deal with for you and your family. On the one hand a diagnosis should help you get the help your DS needs and help others to understand him better but on the other hand nobody wants their child to have that label.

Try to make it a positive thing and see it as the first step on a journey to discover his needs and ways of helping him in the life ahead.

[chowes]

Thanks for the above information, I will check out the links.

The memory of an elephant for useless trivia, bad handwritting, a genius at anything to do with the playstation. a good reader (however does not understand the words) and being very forgetful and unorganised all sound so much like Charlie.

One of our main worries is what will life be like when he grows up. I also think it is sad that he does not have any real friends, unless they are family friends children.

[bustersmum]

Could be my boy too some of the above... hang on it is ! we had our diagnosis at 13 years of age for our son of Dyspraxia still new to us.Having the diagnosis has changed life for the better for our son to know why he is like he is, for us too.School have been great it is like someone has turned on a bright shining light on a dark night he gets all he needs to help him meet his criteria etc his confidence is on the up.

[TinkTatoo]

......One of our main worries is what will life be like when he grows up. I also think it is sad that he does not have any real friends, unless they are family friends children.


I know exactly what you mean about the future and we've adopted the trick of taking one stage at a time - for DS the next big hurdle is to leave a special Ed primary school and have to cope with all the trauma of main stream secondary school but that's all we're focusing on for him at the moment. Try not to look too far a head and just deal with each stage as it arises.

All your DS needs is one friend and you never know when he or she will appear - DS has one friend (who also has autism) and they are both very happy with each others company (even if they spend a lot of their time on playstation games together)

DD just recently moved from special ed to a mainstream primary school and for the first time in her life she now has two friends which is lovely to see

Take each day as it comes ((((hugs)))))

[TinselAngel]

I also think it is sad that he does not have any real friends, unless they are family friends children.

Our school set up a 'circle of friends' for our DS. They did the same for a new boy who joined the school a few months later who happened to have AS. That boy is now one of our son's long-term friends. It's a bit 'artificial' but makes the other children think a bit more about including the child and they may gain a proper friendship as a result.

Best wishes to you and your family - must be a difficult time for you all.

[scottishwee35]

Our school set up a 'circle of friends' for our DS. They did the same for a new boy who joined the school a few months later who happened to have AS. That boy is now one of our son's long-term friends. It's a bit 'artificial' but makes the other children think a bit more about including the child and they may gain a proper friendship as a result.

Best wishes to you and your family - must be a difficult time for you all.

My son's school have it - called PLACE TO BE - and one lady take my son and another boy as they are friend. She see them one a week. I was talking her as first time about my concern over my son's refused new brace last Friday.

She similiar to be counselling, support, to help child gain understanding. It look good as my son always managed to talk about the feeling etc.

It look good to have it every week to help my son confident more.

My son is terrible writing but very strange he can play with his playstation2 fine.

Scottishwee35

[Jedi_Angie]

Just wanted to send my best wishes to you and your family, and to say one thing... "Stay Positive!"

My 12-year-old son Adam was diagnosed with SPLD, another high-functioning Autistic disorder, when he was 4 years old. He spent the first week in primary one hiding under a table and for years we've been battling the education system to get him the help he needed (still battling!).

He's now in first year at secondary school and is doing really well. He knows he has autism and will happily tell everyone that that's what makes him good at maths. He still struggles with 'writing' subjects, and we're trying to get him more help with that, but he has a select few friends at school and goes to a martial arts class (great for autists, apparently!), is learning to play guitar, and has appeared in several productions of his youth theatre group. He's not very sociable, and really dislikes friends visiting the house - he'd rather see them elsewhere - but that's not a problem for us, only for other people. He is a fantastic kid. :grin:

One of the things that always helped me through the tough times was hearing other peoples' positive stories. I remember reading one essay that proposed that Autism is actually the next stage in human brain evolution - they're better than us! :)

As for information ... Google is your friend. ;) I'd recommend joining the National Autistic Society - they have lots of info, etc. about Asperger's and other ASDs. Oh, and - did you know that many professionals now see Dyspraxia as on the Autistic Spectrum? Autism runs in my family, and I have two cousins with Dyspraxia as well as ASD.

Best of luck!

[mazz]

sending hugs as i know exactly how you will be feeling at the moment, unfortunately i've been in this position twice now and i thought it would be easier with the 2nd diagnosis

the importanat thing is to remember that having the label now opens up those doors to access the support your son needs, there is help available but you need to know where to go to find it

with education there is a statementing process for children who need additional classroom support and parent partnership to support you, also it's very important to develop a good honest non critical relationship with your childs school teacher and their SEN manager

if you can find a support group nearby then you will be able to talk to other mums some who will be seasoned guides at this confusing time and talking always helps, i've made some great friends through a support group and they have always been their to offer advice, to champion me on when i've had a struggle with the education and to talk to when i've had a really rough day

if you have a mental health nurse then they are sometimes groups offered for the children who are aware they are different to help them come to terms with their diagnosis and there are usually parent groups too

a social worker could maybe offer you help too, especially with support during meetings and with information, you need to contact ss directly and ask for an assessment for your sons needs and families (a carers assessment for you too) i was adamant i wasn't having a social worker in the begining as i though it would mean i was a bad parent but that's so not true, my social worker is my "childrens champion" and is always there when i need support, i've never regretted having a social worker even when i had a very bad rookie one

i'm going to finish off now with something pretty raw but honest, after the relief of finally knowing what your child has you will probably find yourself going through a period of greiving, it's perfectly normal to think "why us" and "what if" :( it's hard but if you have friends and can talk to other families who also have ASD children it will help


<<<<< sending hugs>>>>>

marie xx

[mazz]

more info

i noticed you mentioned lack of friends here's the link for circle of friends that scottishwee mantioned and you could talk to the teacher about http://www.inclusive-solutions.com/circlesoffriends.asp

my sons mainstream primary tried this twice for my son the first time it failed because they couldn't hold his attention, the 2nd time was more successful as they created a eco club (which was on the cards) where the specially selected children grew vegetables and they invitied James in, he didn't make stacks on friends bt he was there alongside them which is what mattered to us

building good relationships with your childs teacher always makes it easier to approach them with ideas like this

my sons school also had a friendship bus stop which was a area with a bench you could go and sit if you needed a playmate, the idea was that a playground monitor would try to include the child waiting at the bus stop in with another group or the children would know that that person needed someone to play with, with good adult management something like this can go down very well but it needs to be in place when the kids are young, my sons primary had it from reception so it was second nature for the kids

[Sheeps68]

Just wanted to send you all my best wishes. A new diagnosis is never easy even if you've been waiting for it or suspecting it. Take it easy!

[Happy Mickey]

hi if want an inside view of a person with AS then just ask me as i was diagnosed with it wen i was a teenager

it took my mum 9 yrs 4 it 2 b diagnosed

[phgannon]

I'm sorry that I'm a bit late to add to this thread... I'm a little behind my Dibbing!

Our DS is autistic and we find www.specialkidsintheuk.org (http://www.specialkidsintheuk.org) a great resource and so is their forum.

Hope this is of some kind of help.

Best wishes.

Patrick

[chowes]

Thanks for all the info and support, we are going into the school next week to find out what more they can do and how we go about the statement process - i have heard that it can be quite a long slog and we may have a fight on our hands with Kingston Council.

[spenners]

We got our DD1's diagnosis when she was 7, she is autistic, after being told she was mentally retarded for the previous 5 years. I was relieved to get a "label" or diagnosis. We all cope quite well with her condition it's the hassle of getting the help and support that drains us. Good Luck :thumbs-up

[chowes]

Why is it I feel I can't cope and I feel I am such a rubbish mum, dh is away this weekend, if you read my earlier post I have lost Charlie's guinnea pig ( I have not told him this yet) and he has been so badly behaved today.

This week has been so good - he got given star of the day and week at school and yesterday afternoon was doing his artist day for cubs.

Is it that he is testing me, it always seems that the "blow ups" happen with me and not dh. I am getting to the point where I really do not want to be with him on my own for a period of time as I am so tired of the constant battle of wills. I do not want to tell dh as he does not get any time away and I feel that I should be able to cope.

Thank god for school tomorrow, so we can both have some time to mellow.

[spenners]

Why is it I feel I can't cope and I feel I am such a rubbish mum, dh is away this weekend, if you read my earlier post I have lost Charlie's guinnea pig ( I have not told him this yet) and he has been so badly behaved today.

This week has been so good - he got given star of the day and week at school and yesterday afternoon was doing his artist day for cubs.

Is it that he is testing me, it always seems that the "blow ups" happen with me and not dh. I am getting to the point where I really do not want to be with him on my own for a period of time as I am so tired of the constant battle of wills. I do not want to tell dh as he does not get any time away and I feel that I should be able to cope.

Thank god for school tomorrow, so we can both have some time to mellow.

I think every parent has days/times like this. My autistic DD only really responds to me as she has no relationship with her dad, she calls him by his first name, or her sister. I find this very hard as it means I never get a break from her. It is constantly in my face. Try and talk to your DH as he may not realise anything is upsetting you. I think as mums we try and cope and we feel guilty if we can't and we see it as a failure. Keep your chin up and enjoy your mellow time :D

[ali-s]

Aww, sorry to hear you're feeling so fed up, you're not a rubbish mum at all, but I know how it can all get on top of you 'til you feel like you just can't cope - I remember many times just sitting on the stairs in tears thinking ' I can't do this anymore' - esp after one od DS' meltdowns. as for the constant battle of wills, that rings a bell as well ! I learnt quite early on' not to sweat the small stuff' as they say DS was diagnosed at 5yrs - but I knew what the problem was well before that ,he is very stubborn and cannot see others points of view, unfortunately I am also very stubborn and spent many hours in deadlock when DS was a toddler with neither of us prepared to give in. When we got his diagonosis I decided ( mainly for my sanity ) to ask myself before I got into any battle of wills with him, 'in the big scheme of things, does it really matter' ? often the answer was no, so I'd just say 'ok, have it your way' and leave it , then I had far more energy for the times I DID have to put my foot down. I still do this now, though DS has improved he can have his argumentative moments, but he rarely has meltdowns now, things do get better !

[landkmum]

Why is it I feel I can't cope and I feel I am such a rubbish mum, dh is away this weekend, if you read my earlier post I have lost Charlie's guinnea pig ( I have not told him this yet) and he has been so badly behaved today.

This week has been so good - he got given star of the day and week at school and yesterday afternoon was doing his artist day for cubs.

Is it that he is testing me, it always seems that the "blow ups" happen with me and not dh. I am getting to the point where I really do not want to be with him on my own for a period of time as I am so tired of the constant battle of wills. I do not want to tell dh as he does not get any time away and I feel that I should be able to cope.

Thank god for school tomorrow, so we can both have some time to mellow.


I really feel for you at the moment and also know some of what you are going through.

My DS (10) was four when he was diagnosed with Aspergers. Since then we have been battling his school to even get his difficulties recognised. As previous posters have mentioned, his reading age is far beyond his comprehension one and he really struggles with anything to do with writing - his last school report told him he needed to get a sense of humour in his writing, that teacher really understood him!! When we moved schools last September I almost cried when within three days of starting the school we were told by the inclusion manager that his teacher had noticed autistic traits in him - at school he is the 'perfect' student, doesn't make trouble or speak out etc etc. His behaviour at home has always been the issue with my DS, although this is now beginning to spill out from within our four walls.

The last few weeks have been particularly stressful and there have been many times when I have felt like getting in my car and driving away without ever looking back. We no longer have the issue of not being believed about his behaviour at home, since our DD started speaking out the school have been forced to listen, and I have been called into school once again last week because of how it is affecting her. Our main hurdle for the next few months is to get our Ds sorted for secondary school in September. His teacher has agreed with us that there is only one school in our area where he will cope which, unfortunately, is a grammar school. He sat his 11+ in January and we will find out in 4 weeks whether or not he has passed. This is something which is not anticipated because of his reading comprehension, but it will then allow us to go through the appeals proceedure. DS does not have a statement - apparently he doesn'd need one, but it is the concensus of us all is that, if we are unable to get him into this school, we will have to fight the education system for a place at our local special school.

I hope you had a good morning with your DS, for me it was the normal battle ground but at least I now have a few hours of peace.

[mazz]

the statementing process has a legal timescale and you can start it off by writing and asking for your son to be assessed for a statement of special educational needs, letter to head teacher and copy to head of SEN within your authority

these people are most helpful http://www.ipsea.org.uk/

start as you mean to go on, read about statementing on the direct gov website, be informed and ask the experts for advice, don't allow school to drag their heels
you do have rights here and it's important that the school and authority have the impression that you are on top of things

most parents starting off on the statementing route haven't a clue who IPSEA are but i can guarantee you almost EVERY education authority know of them ;)

another place for help with statementing is Parent Partnership, a quick phone call to your local authority education dept will get you the info as to if there is one available in your area, there should be

good luck

marie

ps i would strongly advise you to keep a diary of phone calls, conversations, promises made and people you speak too etc, it is the best piece of advice i was ever given and you just might need it

[mazz]

and there's more

a tough weekend hey?

first can i say you are not a rubbish mum and shouldn't think so for one second, it's very new and very hard for you at the minute

the weekends are always hard for a ASD child because the structure of the classroom and school is not there

you sound like you desperately need some support for yourself and maybe some routine/ structure to your weekend to help your son

is there a local support group by any chance that has weekend activities? or can you plan a routine that would make things more predictable for your son, sometimes the biggest conflicts come from a lack of routine or from not knowing what to expect

also could you ask the teacher for some suggestions, this would be useful only if the teacher has some ASD experience or a good understanding of your sons needs otherwise i wouldn't bother

my oldest is now 14 and i still have weekends that go all to pot no matter how much i think i've got it sussed they can still surprise you and throw up something totally new :erm:

if it all gets too much i make sure they are safe and i take my own time out, i stand in the garden til i cool off rather than explode and lock horns whilst i'm angry

i am lucky that i have a very supportive husband who works family friendly hours, it may be worth noting that if you have a disabled child your husband can apply for hours that are more suited to meeting your family and sons needs


if all else fails, stay positive and remind yourself that you are doing the right thing by talking to others who are in a similar position, be assured that no one can ever get it totally right and know you are doing your best even when it might not feel like it

you are a great mum :grin: because you care about his happiness

sending hugs Marie :smile: