an update from me

[hertsmummy]

 

 

To those of you that remember me and my long venting sessions about my three year old daughter, I gave birth to a healthy 5lb 3oz baby boy on the 2nd of July and we have called him Lewis. Everything is fine but hectic with 3 children under 4 in our house and an 11 year old!

 

Just wanted to let you all know that after 3 phone calls to Katies consultants secretery begging and pleading for help we finally got seen today.

We went in armed with a report from Katie's nursery, a diary of events from the last appointment and a 3 page document of new issues and problems that have cropped up in the last 6 - 8 weeks.

Katies teachers have said that she isn't behaving like a normal 3 year old in class and is now grunting and growling at everyone that speaks to her.

If we were'nt already under review Katie's teacher told me she would have pushed for a school referal.

 

After reading all of the information the consultant gave us a diagnosis of aspergers. We've been given a book about autism and loads of leaflets. I also went to a support group this afternoon and the school will now be involved as they are going to need to know how best to teach Katie in view of her needs.

We feel releived that things seem to be happening now and we are un earthing the help that is available to us.

We have also been told to apply for DLA.

 

We are at the bottom of a huge mountain at the moment and it is clear to us that we are going to need to a lot of research and leg work ourselves to get the right help.

Any advice on where we go from here would be greatly received.

 

We have been told that the team will now meet with the school before christmas to asses Katie's individual needs.

We hope that she will be able to remain in main stream school but time will tell.

 

Not quite sure what happens after that. I have read about 'Statementing' how does this work and what do you do to get it done?

Is this the only official thing you have to recognise that your child has a form of autism?

 

[julie1]

congratulations on your new arrival, thats lovely news made me smile anyway as i love new babys they are so gourgous.

Well now you no for sure what katie problems are i think going on experience that it makes things a little easier in that you no you are not going mad, and its not all in your head.

When the team meets before christmas you can take in your question and just ask away, thats what i did with one of my children and nobody minded.

Is there an early bird programme running where you live? ask the health vistor they should no what help and support is availble.

Keep strong its hard with 3 little ones i no i had 3 children and the oldest was 3. Someone said to me after my son was diagnoised with autism he is still the same little boy who you loved before the diagnois they were right only my love for my son has grown as we have learnt to live and grow together with autism. Iam very proud of all my children as im sure you are of yours.

PS the health vistor should be able to help with DLA forms ours did and we got it 1st time.

[Sally44]

Congratulations on the new arrival.

Can't believe you find the time to post with all those kids and a newborn as well.

I don't know about pre-school stuff.

I would recommend you get in touch with the National Autistic Society and get your names down for their Help 1 Programme, and also any Special Educational Needs seminars they do.

Also contact your local Parent Partnership via the LEA. They have alot of advice about the processes in your area.

You can also go onto your local councils website and search for 'SEN Criteria' or 'SEN Assessments', and that should pull up your own councils Special Educational Needs criteria and what they expect to happen at certain stages.

Ideally you want to be aiming for getting a Statement before she starts school. The reason for this is because SEN places in schools are limited. Find out what schooling options your own LEA has. My own has mainstream, mixed mainstream/SEN and SEN only. To access any SEN placement (either within an SEN only school or a mixed mainstream/SEN school, your child will need to have a Statement.

The Statementing process takes around 26 weeks. You have to have gone through certain stages before you can ask the LEA to assess towards a Statement. But I'm not sure what it is for younger children. If you get a copy of the SEN Code of Practice (you can download it from somewhere on this forum), that gives you alot of information.

TBH, you're right at the start of the process with a newborn as well. So don't tire yourself out.

From the initial assessments that professionals do, they should be able to give you a good indication of whether your child is aiming for mainstream or SEN provision. Just check the schools available within your LEA and visit them and speak with the Head and SENCO and see which one seems to fit the profile of your child.

And ask professionals at what point you would need to start the statementing process so that she has a statement for when she starts school.

For a child to need a Statement they have to have complex needs. As autism affects every child differently you would need to know how autism affects your child and how complex that is. For example many children with Aspergers are not given statements because they tend to do better academically. However a Statement is not just for academic needs. Any child that requires more support in any area over and above what can be provided out of the school's funds is eligible for a Statement.

You say your child has been given a diagnosis of Aspergers. However you say she is grunting and growling at people. Is she speaking; as children with aspergers are supposed to have typical language development up to the age of 3.

[Kathryn]

Congratulations on the birth of Lewis! Hope you're all well.

 

And congratulations of a different kind on being taken seriously and getting a diagnosis for Katie. Take it one step at a time as you have plenty to deal with at the moment. Katie may need a statement, depending on what help the school can provide. It's not proof of diagnosis, just a legal document which guarantees extra funds from the local education authority to help your child in school. It would be a good idea to discuss this thoroughly with the nursery and school first, before deciding to go down this route.

 

There is plenty of support here if you are applying for DLA, many of us have been there and done it.

 

Keep asking questions, someone will be able to answer.

 

K x

 

 

 

 

[bid]

Aww, congratulations! <'>

 

Bid

[BusyLizzie100]

Congratulations on the arrival of Lewis! <'>

 

I just wanted to add that in our county there is an organisation called the Money Advice Unit which is brilliant at helping people apply for benefits. You can contact them through the main county council switchboard but, although they are connected to the council, they're also quite independent (if that makes sense!)

 

Each time I've claimed for my boys one of their team has come to my house and gone through the DLA form with me - it is massive and some of the questions require lots of thinking, and they are brilliant at putting it into perspective ie don't feel guilty and do paint an accurate picture! They will also fill in the forms for you and send them off. They've even come and done the same thing when I've had to renew and have always been really successful. Also, they are very sympathetic and quite wise, which is always helpful at times like these!

 

All the best,

Lizzie x

 

PS and there's no charge!

Edited July 16, 2009 by BusyLizzie100

[Kathryn]

I agree with what Lizzie says about the money advice unit. I didn't have a face to face meeting, but they were very friendly and helpful over the phone and helped me sort out what benefits we were entitled to.

 

K x