Son has probable asd

daska

mummyroysof3 wrote: »

sorry but could some one explain to me what statementing is please? our support worker is arranging meetings with the nursery teacher and SENCO at the school as they need funding for 1 to 1 for him,is it wrong that ive said he cant attand unless they sort that out for him? i feel bad about that but he wouldnt be safe in that environment without being watched more closely than other children his age

No, it's not wrong of you to say that! The way it works is that a lot of the funding for special needs is already spread between the schools in the area. The schools are expected to pick up all the costs related to special needs up to a certain level - so they pay for 'school action', school action plus' and other lesser needs. To a certain extent schools don't like statements because they are then legally constrained by them and the school has to pay the first 10 hours 1:1 anyway BUT... when you have a child whose needs are greater a statement is very valuable because the authority becomes legally liable for the provision named in it and has to provide additional funding (if the hours go above 10) to the school.

Ring ParentPartnership and ask them to help you, that can include goin with you to meetings etc which I suggest you take up whenever possible - if only so that you have a witness in anyone involved is inaccurate or unhelpful. And get the book

choccybuttons

Stressed_Out wrote: »

Thank you for starting this thread :-) I can relate to what you are going through.

My little boy is almost 3 and we are at the moment going through this process we have just been referred to the ASD panel which I'm told can take a long time but also been told that he will need a statement for School he starts Nursery in September also, I'm so worried as I know he'll never cope without 1:1 support. My emotions are all over the place one minute I'm fine the next I can't stop the tears.

He's such a lovely little boy, he's non verbal at the moment so having help with that also.

It's so difficult not many people understand and just think that he is a 'naughty boy'.

Any help and advice would be gratefully accepted.

xx

omg this is me. I could have wrote your post as we are at exactly the same point. We have been given a diagnosis of probable/possible asd for our 3 year old. We have been told a confirmation diagnosis will not be made until he is 6/7 but he will get all the support until then. It was explained to us that they do this because some child can grow out of asd traits as they get older but allows the support to be there for those who don't.

It took me a while to get my head around it esp since MIL started screeching on about labeling (sigh). I just want to do anything that will help him in school ect.

daska

Does your MIL have any medical conditions? Next time she mentions them tell her that you <insert her preferred criticism> of labels such as diabetes/arthritis/other as they're just excuses for not controlling blood sugars/walking/other. It might help put it into perspective for her.

Stressed_Out

It now looks like my DS won't be attending School Nursery in September as I've been told a statement can take 6 months or so therefore he won't have 1:1 in a School Nursery setting there's no way he'd be able to cope without support or the Teachers with him.

Also does anyone elses child suffer from constipation? Ive been back to the Doctors yet again today with him. He's on lactulose all I've been told to do is up the dose so now he's on the max amount allowed. He's hasn't been for almost a week & suffering :-(

Nicki

It is possible to get a statement more quickly than 6 months, the school can allocate someone to look after your son without a statement, and in extremis the school can apply to the local authority for emergency funding for extra staffing for the safety of your child and the other children in the class. So don't abandon hope of a nursery place for September yet.

I am speaking with the voice of experience of (1) a parent whose child has a statement (2) a governor of a mainstream primary school for 7 years with specific responsibility for SEN and (3) chair of governors of an ASD school for 8 years. My child's statement was finalised before she started nursery in less than 6 months, and both schools I have been involved with have applied their resources in the way I described. Don't forget that a nursery will have 3 or 4 adults in the room anyway due the staffing ratios for that age group, and if one child does need a lot of extra attention, this can be given on a holding basis before a dedicated 1:1 TA can be engaged.

shegirl

Stressed_Out wrote: »

It now looks like my DS won't be attending School Nursery in September as I've been told a statement can take 6 months or so therefore he won't have 1:1 in a School Nursery setting there's no way he'd be able to cope without support or the Teachers with him.

Also does anyone elses child suffer from constipation? Ive been back to the Doctors yet again today with him. He's on lactulose all I've been told to do is up the dose so now he's on the max amount allowed. He's hasn't been for almost a week & suffering :-(

It is possible to get a Statement quicker than that.If I was you I'd send him to nursery as they can allocate someone to help.Be aware though that he may not get full time help (not all need it,and as he gets older everyone will see what is needed where).As Nicki states there is emergency funding too.

As for constipation,with ds it's the opposite which can be a nightmare (he's on the severe end and at 13 has only been out of nappies just under a year -you can imagine the fun of changing them:eek::rotfl: wouldn't wish that on anyone ).Bowel problems appear quite common in ASD kids so you will likely find several other parents with either the same issue or the opposite,so may be able to get some advice.Ask about it on the health board too as many people will suffer,and also talk more with your GP or paediatrician regarding it.Investigations were made into ds problems but no cause ever found.

raq

Aldahbra wrote: »

I am so pleased to hear that they are diagnosing early now. I know that this will have been a shock, even if you had your suspicions. I know I cried myself to sleep every night when my DD was first diagnosed. But an early diagnosis and early support really will make a big difference.





It really is very important to get a statement. Although legally the school aren't allowed to discriminate against children with disability in reality they see a statement as the criteria for support to be given to children. It is hard and costly to ensure that a school meets your child's requirements without one. The process is quite drawn out, so it would be better to start the ball rolling as soon as you can, so that support can be in place as soon as he starts school.

ASD diagnosis cover a wide range conditions all on the autistic spectrum. You may have to wait until he is older to find out the exact nature of his autisum. Although life will undoubtably be harder for your child than other children, it does not mean that your child will not lead a full and useful life. ASD does not necessarily mean that your child will not have a good job, get married and have children. Early intervention makes a positive outcome more likely.

Some really good comments here. My little boy was diagnosed July 2011 . Answer was "Very mild autism". Lack of speech and learning delay. He was just at the starting point of the report stating ASD. I cried, cried and cried. My hubby and parents are the strong ones. Sometimes you see parents looking in the playground when I collect and it use to really hurt me and they are noisey people. Reason I say this is that they never spoke before and suddenly they want too speak to you. I can really do without people like that. Now I just dont bother with any of them. My mum always states" some people do think they do no wrong and they have the perfect life"... Say no more.

Can I just say though, to us we love and adore our 3rd little boy. He is sooooo funny and gorgeous and to us know he is just like the other children. Yes he gets 1 - 1 support and he is doing fantasticly well. Much better than the school thought. He is 5 years old and now can read a few of the "Kipper and Chip" books. Now we never thought we would see the day. He can also now hold a conversation with us. I do get my grey days and lots of tears but not as much as last year and the year before, because there is light at the end of that large tunnel. May I also add, very close family and friends never ask if there is something wrong with him as this also goes to show how well he is getting on. My health visitor states that if people do ask and if am just comfortable with stating" learning delay" then go ahead.

Big hugs to you all.
x

mummyroysof3

thank you for the replies.

been looking at the DLA forms again today..i dont even want to fill them in but hubby wants me too..support workers aid she would help me with them tomorrow. dreading friday when he moves from bed to cot

daska

Stressed_Out wrote: »

It now looks like my DS won't be attending School Nursery in September as I've been told a statement can take 6 months or so therefore he won't have 1:1 in a School Nursery setting there's no way he'd be able to cope without support or the Teachers with him.(

Who told you this? The School? There is still funding available they just need to make the effort to find out where from and apply for it. Locally we have a multi-agency panel that assigns financial support pre-school children who may or may not be in the process of applying for statements. I think you should get in touch with Parent Partnership and your local council's Family Information Service as a matter of urgency before you find it's a fait accompli and his place has been assigned to another child.

This might be difficult for you but I strongly suggest that you approach the question of support from the stance of "it's their problem". If (when) they struggle to cope with his needs, the 'evidence' they will be able to amass to support the application for a statement will be very valuable. Keep a diary of how it goes - every incident, every time they ring to tell you he's struggling, every please can you collect him etc.

N.B. I am NOT suggesting that you should be hostile or demanding or negate any responsibility that naturally falls to you!

(DS2's school nursery didn't have any additional funding at all yet the Head ensured he still got full time 1:1 support.)

Stressed_Out

daska wrote: »

Who told you this? The School? There is still funding available they just need to make the effort to find out where from and apply for it. Locally we have a multi-agency panel that assigns financial support pre-school children who may or may not be in the process of applying for statements. I think you should get in touch with Parent Partnership and your local council's Family Information Service as a matter of urgency before you find it's a fait accompli and his place has been assigned to another child.

This might be difficult for you but I strongly suggest that you approach the question of support from the stance of "it's their problem". If (when) they struggle to cope with his needs, the 'evidence' they will be able to amass to support the application for a statement will be very valuable. Keep a diary of how it goes - every incident, every time they ring to tell you he's struggling, every please can you collect him etc.

N.B. I am NOT suggesting that you should be hostile or demanding or negate any responsibility that naturally falls to you!

(DS2's school nursery didn't have any additional funding at all yet the Head ensured he still got full time 1:1 support.)

It's written on a report from educational psychologist that I've just received stating that DS would be better in a private setting as funding maybe available for a private nursery but not for a school nursery?? I would rather DS go into a nursery school setting as it's the school that we would like him to follow onto but the lack of 1:1 fears me.

I've spoken to our family settings worker who explained about it taking 6 months for a statement so DS could be alone until Christmas.

Something I read on another board when I first began to fear ASD a Mother's tips 'were to grow a thicker skin and be prepared to fight for everything for your child'. Already I feel I've had to and it's only been 9 months..