Monday, 20 December 2010

December is a Waity Month!

So it's true, December is a waity month. Not only because we've been waiting for Christmas! For us December has been a lot more waity than that.

We've been waiting the last 6 weeks for the local education authority to make a decision about whether or not to assess Sam for his special educational needs. Well today (on the last day they had for us to receive it) we got a letter finally from them saying they were going ahead with the assessment. We are relieved and so happy about this. Hopefully this will lead to Sam having a statement in place for when he starts primary school next year. I will be interested as well to hear what an educational psychologist thinks of him too, hopefully that visit should be arranged straight after the Christmas holidays.

We've also been waiting for Sam's official diagnosis. He was due to be discussed by the multi agency team on the 15th December but I've heard nothing about it yet. Someone mentioned to me that he was first on the list so there was no reason for him not to have gotten his diagnosis but we'll have to wait for the letter from the paediatrician! More waiting!! At the moment I am happily plodding on, but I'm sure it will hit me once I see it in black and white. I have to remember that Sam is still Sam, he is a happy, energetic, loving little boy regardless of his autism.

We have also made some rather large life changes and are waiting on those as well this month. We decided to open a cake shop and work for ourselves. This will hopefully lead to a more flexible family life and when you have a child with disabilities this is soooo helpful! We are underway getting things ready and will hopefully open after New Year sometime!

Finally, just wanted to share a nice outing with you that we had the other day. We were invited to go on the 'Santa' train at the Lakeside and Haverthwaite railway. The boys had a great time. Although Sam doesn't really 'get' trains, he loves the movement and the fact that you can look out a window without being strapped in a seatbelt. William was much more fidgety but both boys did really well considering the journey was an hour and a half. They also got a present from Father Christmas which although they weren't bothered with them at the time, they've been playing with the toys ever since! It was nice to know from my point of view that we could still go out and have 'family time'. It did help that no one batted an eye at Sam's flapping and shouting as the rest of the carriage (and 2 more besides) were full of other disabled children and their families! If anymore train events come up we're going!

Saturday, 23 October 2010

Catching Up

There has been so much going on recently that I've not really had the time or inclination to post until now. We've all had colds too which hasn't helped!

Sam has had some fantastic days at nursery (probably helped by the fact that for the last week he's had some great nights sleep!). He has been a lot more focussed and attentive. And on one of the days he stops for his lunch he actually sat down at the table when he saw all the other children sat down and waited for his sandwich! His support worker made him wait 2 minutes and gave him his drink then another 2 minutes and gave him his sandwich. Sam basically doesn't do waiting so this was a real treat.

We are finding that Sam likes things to be in context. We really struggled for days putting on his school jumper, but when we do it just before we go out after he has his shoes on he is fine about it. We had just been trying to put it on him too early.

We've just had another 'team around the family' meeting which Andy was able to come to as well. We went in with the idea that we would get pushy if needed, but we didn't need to! Our team of professionals are the pushiest (but nicest) bunch around! After our initial referral for Sam to get a statutory assessment was knocked back I was concerned that the next one wouldn't go in for ages and the specialist advisory teacher is pushing for it to go in asap after half term. So excited about that, and she's sure that this one won't be rejected. She thinks Sam needs the highest level of support as (and this is the real hard part) the feeling is that Sam is most likely profoundly autistic. On the scale of criteria they use, profound is about as bad as it can get. So mixed feelings really, as I'm pleased no one is pretending he is fine and coating anything with sugar, but.....ouch (knife through the heart moment). The specialist advisory teacher is also on the panel which will diagnose Sam and it looks as though she's going to try and push him through for discussion as soon as she can.

I signed up for the More than Words course the other week and we had the specialist speech and language therapist here a few days ago to do a pre-programme assessment. She was lovely, took a lot of history and a short video of Sam. I'll start the course in November so it should be good! She is also on the panel that will diagnose Sam so it was great that she's met him, as she said any evidence she observes she will take with her to the assessment.

William is still great, he is nearly one now! His current favourite thing is pretending to eat and drink play food and making you pretend to eat it too. He is still pestering Sam constantly which is great too. The other day I caught them both squished into the same box which was quite funny! Don't know who got in first but I didn't care to be honest, just to see the interaction was brilliant.

Saturday, 25 September 2010

Progress: Brilliant But a Little Sad Too

Forgive me for not writing more recently. Sam has been waking up in the middle of the night and not going back to sleep so we're all a bit tired and both boys have stonking colds at the moment so we have our hands full!

I know I mostly post when something good is going on and I'm in a happy mood but I need to share a bit of the rough times too I think. The stuff happening now is terrific in one respect but a bit sad for me too.

I think I knew these times would come, and it's great that they do, but there's a bit of sadness too in the progress that William is making. I suppose it's not progress really, but 'normal' development. And it's beginning to overtake Sam. Don't get me wrong. I'm so happy William is getting along so well but at the same time my heart is breaking.

It's the little things really. William does a little dance when music comes on (more of a head shake, arms waving about), he plays with toys the way they are meant to be played with, he claps, points, can stack stacking cups, tries to imitate you when you are sweeping, gives great big hugs and has now started to try and give great big kisses too. He acknowledges you when you call his name and his understanding is coming along nicely. Although Sam could do a couple of those things at William's age he lost those skills soon after and still can't do most of these things.

But Sam is showing some signs of progress as well, and he's been a lot more interactive with William and affectionate in general. I think he is really loving nursery and I'm sure it is bringing him on a lot, it just really brings his condition to light when you see the things his 1o month old brother can do. If William could just teach Sam now that would be wonderful!

Thursday, 9 September 2010

Primary School Visit

So this morning we went and visited a primary school that we thought might be suitable for Sam starting in Sept 2011. It is about a 20 minute drive from here on Walney Island. We'd heard it might be suitable from various people as although it is a mainstream school, they have a huge focus on inclusion of those children with special needs. In fact, much like Sam's nursery has a special designation as an inclusion nursery, this school is the primary school equivalent if that makes sense!

So before we got there this morning I found myself having really high hopes for this place and I was not disappointed! A lovely senior teaching assistant gave us a tour and discussed the special needs side of things with us, answered all our questions and was very lovely towards Sam. It's a small school, under 200 pupils and about 30 of those have special needs of some description. So quite a high proportion really. They said that if we applied Sam would most definitely get in due to his needs. I came away feeling really positive about everything, seems like things are finally coming together!

Wednesday, 8 September 2010

First Week of Nursery

So Sam started back at nursery on Monday after a 7 week break. The night before I was so nervous that I was feeling a little sick. We were really expecting him to be unsettled there this week, probably clingy and generally upset. He is going 4 mornings a week now instead of 2 afternoons and on two of those mornings he is staying and having his lunch there as well.

Well I dropped him off on Monday morning (after he'd been awake since 3am!!) and he walked into the room like he'd never been away! Had a look round, came back to me as I was updating his support worker but there was no screaming, clinging onto me etc. I left and went home all the while worrying about how he was getting on. When I went back a few hours later to pick him up they said he'd had a brilliant morning! Couldn't quite believe it! The following day was great too and then this morning we took him in with his little packed lunch. I really didn't expect him to eat anything as sometimes at home he doesn't like to eat if we are in the same room, let alone a room full of pre-schoolers! But his support worker managed to get him to eat his sandwich and treat at the table, woohoo!!

I am so pleased and proud of Sam this week. He has a day off tomorrow and then is back in for his last day this week on Friday. I'm hoping for another good one. I think a lot of the change in him is due to the fact he is a morning person and was usually worn out by the time he arrived in the afternoon last term. It's so nice that nursery can see the happy, fun side to him as he is in the morning.

I have signed up William to have one morning a week at the nursery too at the same time as Sam so that I get a bit of a regular break each week to catch up on housework or have a cuppa! They run a private daycare there too, so it made sense to do it and try and save some of my sanity. We took him for a little visit to the babies room today to see what it was like. He seemed to enjoy himself, taking it all in. We got there and sat on the floor with him and before we'd even been in 2 minutes Andy had a crowd of babies bringing him toys and hanging onto him. It was so funny, I wish I'd brought the camera especially when they started bringing hats over to try on his head! Andy seems to have this effect on babies and toddlers wherever we go!

Tomorrow we have made an appointment to look around a mainstream primary school that takes on children with ASD and have several staff members trained in it. Really hope we (and Sam) like it as he may end up going there next year.

Thursday, 19 August 2010

Good News Bad News and Other Stuff!

Good news first! We heard back about the dreaded DLA form I filled in for Sam and we've been awarded high rate care until 2015! This is such a relief and one major stress out of the way. And to know that we don't have to fill it in for another 5 years is wonderful. Now maybe it won't feel quite so bad when we're up with Sam from 2.30am onwards!

Bad news then. Our referral (well, the nursery's referral) for a statutory assessment for Sam was turned down by the LEA (local education authority). When I opened the letter I couldn't believe it. All that was going through my mind was how is Sam going to get any kind of education without any support? After blubbing for a bit, I rang our health visitor who assured me that Sam would still get an assessment and she promised to ring all the relevant people. She called the nursery and spoke to the head teacher who said not to worry, that they've been refused first time in the past. The woman from the LEA rang me herself and said not to worry too. That all they need is a bit more evidence, mainly from the specialist advisory teacher who will be seeing quite a lot of Sam this year. The nursery will rewrite the referral and we'll see what happens.

One good thing to come out of the referral was a paediatricians appointment. We've been waiting 17 months for a follow up appointment. Sam was very good, no tantrums or anything but he did flap a lot and we were able to explain all about Sam's problems as they are at the moment. The doctor wants to see Sam again in a couple of months to review his behaviour (not holding my breath for that appointment).

We bought Sam a touch screen monitor to use to play very simple games on and he's really loving it so far. We've found a few bubble popping games which are proving very popular! Hopefully if he develops more understanding we can find more increasingly challenging games for him to try.

William has started walking!! At 9.5 months old!! He managed a couple of steps last week, but this week he is all about the walking. And he tries it everywhere. When he falls down he claps himself which is very sweet! Sam had better watch out now as he's only going to get better and faster at it then there will be no escape!

Finally, today we went to a fun fair. Wasn't expecting to stop really thinking it would be too busy etc etc, but it wasn't at all. It wasn't huge and there were no crowds of people which made it really nice. Sam looked quite excited about all the rides and got to go on some with Andy. He went on the rollercoaster, the dodgems, and a fast spinning ride (which I would have called the scrambler from my childhood). Oh and of course a bouncy castle too! He seemed to really enjoy them too. He wanted to go on the dodgems when we were on holiday last year but was too little at the time so he was very pleased to go on them this time and had a good flap! So it was a really good afternoon, topped off by a yummy chinese takeaway for tea!

Tomorrow we are expecting Sam's new bed to be delivered so hopefully he will like it as much as he did in the store when he had a good bounce! :)

Tuesday, 3 August 2010

Holiday and Post-Holiday

Well we went off to Cornwall for a week. Well it was supposed to be a week, but we came back a few days early as the weather was so bad, raining non stop, and with 2 little kids in a small holiday cottage far away from most of their toys that they can play indoors with, it's a little grating on one's sanity! We did manage to have one beautiful warm day so we hit the beach in the morning and a play farm in the afternoon. The boys loved the beach. It was William's first time and he made the most of it! Trying to stop him eating the sand was probably the hardest part. Sam as usual LOVED it, loves the sand, loves the splashing. In fact if we lived near the ocean he would probably end up being a surfer dude one day!

On the bright side the boys were wonderful car passengers there and back, probably helped by watching Bear in the Big Blue House on the dvd player.

Well, we've been back nearly 2 weeks now and are slowly working through our list of jobs that need doing, next on our list is painting the living room and kitchen!

The boys have been doing a lot of interacting this last week. Poor Sam, he is being chased now by a very fast William who will not leave him alone. He gets prodded, whacked, climbed on, and he just let's him do it! In fact, probably 75 percent of the time I think he is enjoying it. This is great, more interaction has got to be a good thing to help him progress.

Another plus is that Sam seems to be coming out of the toast phase he was in. He's now back to eating his instant oats for breakfast and yoghurts too. It may be a small thing to be so pleased about but when he eats such a tiny range of things it's great to know he's getting just that little bit of extra calcium and other vitamins.