Monday, 8 October 2012

Lots of good and a little bit of bad.

So today was River's first ever full session at preschool without me! It went brilliantly. I snuck out when he wasn't looking and was free! Such an amazing feeling. I think people expect you to be a bit sad when leaving your child in preschool for the first time, but I was super happy! I have complete trust and faith in River's 1:1 support and in his preschool, and having some time off has been a long time coming!

I was able to do some many simple things with ease that I normally can't do- like hanging the washing out upstairs. I can't do that during River's waking hours as I can't leave him unattended for a second, and I can't take him with me as he assocaites the top floor with going to bed so would go berserk. Plus, I can't carry him and a washing basket up the stairs! And I made some chicken burgers without having to wash raw chicken off my hands every two seconds to get River a snack, turn the tv over, read his book etc.


He seemed very happy when I picked him up and had had a brilliant morning. So all in all, a great success.

Although I'm currently feeling a bit stressed. One of the reasons for wanting an early diagnosis was to get a place on the EarlyBird course. The EarlyBird course is a course ran by the National Autistic Society all over the country for parents whose child has received a confirmed Autism diagnosis before the age of 4. There are 6 families on each programme, so it's a brilliant way of meeting other parents in your position. It's once a week for 3 months, sometimes in a training centre & sometimes as a home visit.

Since getting our diagnosis, I've been asking for a place on this course. Our paediatrician said we should definitely go on it & told us to speak to the Autism Outreach Team (SAOT) who organise it. So I spoke to them today, who've said there won't be any EarlyBird courses running in the area for the foreseeable future, as there aren't enough families getting a diagnosis before 4. They've said we basically have to wait until River turns 4 and then go on the EarlyBird Plus course (for ages 4+.)
So I called up the National Autistic Society and asked them where the nearest course was to us. They said Weston-Super-Mare. So I called the WSM branch- who said we couldn't go on their course because we weren't under their catchment! I asked whether getting a letter from our paediatrician would allow us to go on it and they said, "Well you can try, but you're not even close to our area so I doubt it."

It makes me sooooo, sooooo cross that we pushed and pushed to get an early diagnosis, because early intervention is so important, and yet we're then told to wait another 2 years! We are very fortunate to be getting weekly Portage sessions and have seen other therapists, but we really wanted to go on the EarlyBird course.
It annoys me that we are missing out on help & support because children aren't being diagnosed before 4. And the reason they aren't being diagnosed is because health visitors, doctors and other healthcare professionals are wanting to "wait and see" and not "label" a child too young. In my opinion, there is no reason to delay diagnosing if all the signs are there.

What this has made me realise is that just because a service is "meant" to be available, doesn't mean it will be. And just because we're told certain help will be available for River, it doesn't mean it will be. And this is why we want him to have a statement. He's currently getting a lot of support- weekly Portage, 2yr old funding for nursery, 1:1 support- but if for some reason the Local Authority were making cuts and wanted to stop it all, there's nothing we could do. Whereas if he has a statement, it is a legal document and the Local Authority is obliged by law to stick to it.
So I guess that's the next battle really. I'm going to attempt to approach this slightly more relaxed than previous battles though. I'm going to *try* and not let it overshadow everything else in life. And rather than try to do it all on our own, I'm going to let people help us a bit more too- there are a couple of good organisations that are there specifically for this sort of thing- Parent Partnership (information advice and support to parents and carers of children and young people with special educational needs) and also IPSEA (a national charity providing free legally based advice to families who have children with special educational needs.)

So overall, I'm feeling good- sooo pleased River is settled at preschool and I get a break! Massive milestone for us. Also a bit grumpy that the support isn't there for us when it should be and that we have another struggle on our hands- BUT feeling like we're not doing it on our own now, that there are people whose job it is to help us which is comforting.


  1. So pleased River's first 'solo' session went well - must be hugely pleasing for you to know he is OK at his pre-school. Hugs! Martyn

  2. yeay for River! sounds like you need the rest and thinking time, hope you enjoy it and dont just do washing, lol! you should treat yourself to a very long bubbly bath! xx

  3. Hey its great to have a break especially when you know your little one is happy and safe. I hope it doesn't take a long as two years for you to get the additional support you need.

  4. Is there any possibility you could contact the other branch that runs early bird and ask if you can purchase the booklet that goes with he course. It's quite informative, we're lucky in our area there's only one place that does it and it covers such a large area that courses run one after another. Or you could try the NAS website to see if they have booklet about it. Hope you get some success as it is. Brilliant course