Wednesday, 31 October 2012

GUEST BLOG: A Daddy's Perspective

So Tim asked me today if he could write a piece on the blog, to give a Daddy's take on things.

So here it is.

A Daddy’s perspective
It’s an interesting place to be in, to be reading a blog about your own Son.  The last year has been such a rollercoaster ride for this little family and to have the trip available to muse over in a blog has been invaluable to me personally. It is easy to forget how far we’ve come and miss the small stuff. But having the blog gives me time to reflect on the journey we have begun. A time to stop and smell the flowers if you like.
I wish I could paint a picture with words the way that Gem does. Gems blog has the ability to transport you right into the heart of our family, quite often I have been moved to tears or laughed out loud at something funny River has done and Gem has recaptured here for everyone to share with us. I think my blog entry will be clumsy and not as well put together as my gorgeous fiancĂ©e. So please forgive me if this entry isn’t up to the usual standard!
I came across this article this morning and it moved me more than I imagined it could.

I can just imagine River in this situation or others similar, wanting all the sweets because he would need to separate them into piles and want to know the different colours.  To others he would seem greedy, slow, backward or selfish, but we all know different because we all have taken the time to know River. To be honest this breaks my heart, I hate the thought of River being misunderstood at a first glance. I want everyone to see and appreciate how amazing he really is and to tell him so. Through knowing him I can tell that he is going to be such a sensitive soul. Gem and I will be standing with him for as long as we can but it is a worry that we might not always be there, and then who will? Who will be able to tell the world what an outstanding individual he is if we aren’t able to? Who will be able to take the time to get to know him when the world is so fast paced and busy and people all too frequently need to fit into slots that others dictate?
I work office hours during the week, River sleeps well so I don’t get to see him in the morning although he is often chatting and giggling to himself by the time I set off. (I would love to know what he’s thinking about at these times). By the time I get home in the evening, River is usually motoring up and down the living room at 100mph, there will be balloons, balls, picture cards and books scattered everywhere, different piles of similar toys will be stored under cushions. Normally in one of the chairs will be a family of ducks, in another will be a pile of spoons, another favourite at the moment is disposable cameras. Once River has found one of his toys he will set himself a personal mission to find the rest of the set. River will notice my arrival at some point and if I’m lucky he might be able to pause for a second to acknowledge me being there before whizzing off again with a shout and a puff of smoke. Gem and I were comparing him to the Tasmanian Devil cartoon character the other day, I’m sure you can see why.
The weekends are our time to play together as a family. It mainly used to involve considerable amounts of time at the motorway bridge watching the traffic go by; another favourite would be simply watching cars parking in a car park. But as time passes River is noticing more of the world around him. Earlier this week we took him to a garden centre to look at the brightly coloured fish. What captured his attention more than anything this visit was a guinea pig. It doesn’t sound much but trust me this is massive, a few months ago he wouldn’t even have noticed an animal if you put him nose to nose with one.
 To me this is what it’s all about; it’s savouring every small step on the journey, remembering and recording it in a blog for ourselves and for our friends and family to share. The path we’re walking on might have a different destination but that doesn’t mean it has to be any less pretty. We share this blog because we want to share River with you. We want the world to learn how blessed we are that we’re his parents and how much richer our world is when we get to amble it at an albeit slower pace with a boy named River.

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.

Thursday, 4 October 2012

Feeling good!

Well River has been at preschool for four weeks now, so it seems like a good time to write a new blog entry.

Things are going very well! River is managing the full three-hour session, which has surprised everybody as we all thought he would need a much more gradual introductory period and would maybe manage half an hour for a couple of weeks, then build up to an hour etc- but almost from the very beginning he has lasted the whole time. He has also bonded really well with his 1:1 support, who is really lovely & definitely the best person for River. He's managing to sit at the table with the other kids for snack time, and hasn't felt the need to grab any other kid's faces for a while!
There are definitely things that have been crucial in this happening.
Firstly, I have been by his side for the first 5 or 6 sessions. During the completely alien experience of being a preschool, he always knew he was safe because I was right there. This is soooo massively important to children like River. This has meant that he has managed to get to know his 1:1 support whilst still having me in the background. Getting to know new grown-ups is a big deal for River; most children will recognise a friendly face, someone smiling at them, saying nice things to them and speaking in a calm & caring tone. Whereas River doesn't understand facial expressions, he doesn't understand much language and he doesn't understand tone of voice- which makes new people quite scary for him. So having me there has helped tremendously with this process.
Secondly, the fact that he has 1:1 support is vital. All these crazy kids being noisy and running around, and yet in the midst of it is one person who is always by his side, always encouraging him to interact, and who has now learnt his likes & dislikes, his limits, & how to prevent certain situations occuring. I dread to think what would happen if he didn't have that support.
At snack time, the children would normally pass a plate of fruit round & take one piece at a time. Whereas the only way River will sit at the table is if he has a plate of fruit in front of him to focus on. So that's what he has. Just adapting such a simple thing can make all the difference.
When we first started, we arrived 15 mins late and came in through the side door which is in the playground, so River could spend time in the playground and come in when he felt ready. Now, we're managing to come in through the main entrance. We still come in later than everyone else so that all the parents have gone and the kids are settled (in fact, today we were really early & arrived t the same time as everyone else & River had a minor freak-out) but we're doing well.
I then spent a session sitting in the corner of the hall, so that I was accessible if River needed me but it meant that he was more likely to interact with is 1:1 and work on his rapport with her instead of always looking to me. Then I spent a couple of sessions sitting in the kitchen out of sight, and even popped out to the shop- and he didn't even notice I was gone!
As from next week, I'm going to be leaving him for the whole session. I feel completely confident that he will be absolutely fine, and I am so very excited to finally have some time to myself!!

In other news, we've started our weekly Portage sessions. Our Portage worker is worth her weight in gold, really lovely and knows exactly what she's doing, very positive and knows how to push River's boundaries without pushing him too far. She also gives me lots of new ideas for games and activities.

We're also thinking of stopping the gluten free & dairy free diet. River has definitely made some progress since being on the diet, but not anywhere near the same level that others have found. The progress may be down to the diet, or it may be because he's just naturally developing, plus he's now having Portage & preschool and I spend a lot of time playing with him. I think the only way of knowing is to reintroduce these foods and see if he stops progressing or regresses. So now I just need to decide whether to stick it out a bit longer, reintroduce just dairy, just gluten, or both.

So overall, things are going very well! I'm making a really concious to not dwell on the future and the "what-ifs" and focus on the here & now, celebrating the achievements each day.