introduction, help and support

Hi Yorkshirelass,

 Thank You for your kind words.

I think that very often parents of children on the spectrum become issolated and have to battle on alone much of the time. I have done for years and wondered perhaps it's just me? However, when you come to a forum you realize their are many fighting the same uphill battle. My knowledge is actually very limited really, but i'm happy to pass on links or info to others (If I can remember where to find them) in order to help.

A few years ago I was at breaking point. I'd just completed a tribunal alone with no support and like you I felt I'd let my son down with the level of support agreed. My husband was also unwell and I was struggling to start a new business. When one more thing fell on my door mat, it was the straw to break the donkeys back. It nearly, killed me in fact. Had i been a member of the community then, things may not have been so bleak.

Sadly, i'm very slow to learn and process info. It takes me a while to understand the consequences of certain things. Talking to people here helps me. Firstly, to realize i'm not alone and secondly, that you, myself and others benefit from such experiences shared. If i'd had greater support back then, i would never have reached such a low, i'm sure.

A word of caution though. Be kind to yourself. Parents like us often reproach ourselves for things we should or could have done. We can only act on the advice we are given at the time. If that advice was wrong, their is little we can do to change it. I know you are angry, but you will be able to channel that now into better support for your daughter.

When you mentioned about CVS I remember seeing a video about anxiety. Am I right in saying this is a stomach migrine problem? I've posted the link, if it's of any help. Their is a strong link between health and anxiety levels and stomach, bowel etc. (the seat of emotion, lets face it) are often affected. See if any info in this either sounds familiar or helps in some way.

www.youtube.com/watch

I'm Glad your daughter feels better. Few understand how draining supportiing those on the spectrum can be when they suffer so much. 

Take Care and thoughts to your family,

CoogyBear XX

Thanks Yorkshirelass, but my experience is really very limited in fact (only my own children)...

I do however, suggest that you (Missyd33) now lodge the statutory assessment request i mentioned earlier, to the LEA. I'm pretty sure this will focus the School very quickly to your concerns. It's poor that no one showed up to the meeting and I'm sorry, but your childs support is key.

Happy to assist with my limited experience, but the links i gave earlier would be far more helpful, than my limited experience.

Regards,

Coogybear XX

Thanks guys your advice is very appreciated  

as far as the TAC meeting went, it didn't! was left to sit and wait for nearly an hour before they came to tell me that the person who was chairing the meeting had to leave the school on personal business, so when i asked who else was attending and could the meeting not go aheaad without her? I was told that no one else had been invited, not the head of yr, form tutor anyone, so if their meetings are anything to go by, i'm not holding out much hope that know what their doing with my son

Hi,

Our boys School, dropped German and French in order to timetable intervention. Pretty reasonable really considering their difficulty with English. 

I most definately would put in a request for an assessment now, because of where you are in the academic calender. Once the School is shut for the Summer, getting correspondance will be difficult. It would help if the School are on board, but it's not essential.

Can I also suggest the sendist code of practice. A bible for parents who want to negociate the complexities of the statement system. It's available to download.

www.gov.uk/.../special_educational_needs_code_of_practice.pdf

IPSEA do a model letter to enable you to request a statutory Assessment for your son, Link below. Hope thats of some help.

www.ipsea.org.uk/.../Common-problems.aspx

Kind Regards

Coogybear XX

Hi

You can apply for a statement yourself. You do not need to wait for school to do this. Even without a statement you can ask for concessions that you feel many help your son.  I found that although my sons have statements they are not worth the paper they are written on because some teachers refuse to adhere to the guidelines, resulting in anxiety when there shouldn't be, which is extremely frustrating.

Some schools allow flexible schooling, whereby the child does some lessons at school and some at home. If he can work on his own, this could be  an option for him.

Hi there,

I have a TAC meeting at his school tmrw and have been advisd that i shoauld ask them to start the ball rolling with regards to a statement of need for him and that if they refuse to contact my local authority.

I have been told of the IPSEA website and am yet to contact them. thank you for the suggestion of alternative therapies i will look into this.

Diane

Hi missyd33,

 First of all, Welcome.

I'm not faamiliar with your area, but i saw this on NAS and wondered if it might be of use to you. even if not call them as they maybe able to signpost you.

www.autism.org.uk/.../support-centres.aspx

I'm familiar with much of what you mention, as I have two boys on the spectrum myself. Can I ask, are you able to apply for a statement to support his needs at School?

In my own experience, as the child moves up the academic ladder the potential for meltdown increases. This can be hugely helped if support is in place on the education front. It doesn't mean he has to change Schools if he's happy there and they can provide for his needs, but it will give more definative support in the identified areas of need.

IPSEA would be the ideal people to guide you through the process.

http://www.ipsea.org.uk/

It sounds from what you say that he's already quite highly anxious. Do consider some alternative therapies if you feel he can manage them. They can have the effect of turning down the volume if anxiety is high. For my own son, we had to find our own councellor following a CAMH's assessment as the number of weeks support was very restrictive. (6 weeks only) Try and find an Autism Aware therapist if you can. Ours was highly trained (although I didn't know that then) and was the one who alerted us to his ASD behaviour.

Hope my modest suggestions are helpful.

Kind Regards

Coogybear XX