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!

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!

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.

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! :)

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.

My good boys!

We've had a few good days with Sam at the moment and I thought I would share what's been going on.

He had a brilliant afternoon at nursery a couple of days ago. When Andy went in to pick him up he discovered him in his full spare set of clothes wearing his wellies. It turned out that a teacher had been filling up the water table outside with a hose and Sam decided to have a bit of fun! It took 2 days for his shoes to dry out! Later that day, seeing as he was in such a good mood we decided to try cutting his hair. Last week Andy bought some brand new clippers that were much lighter, cordless and quieter than the old ones and I think this made all the difference because his hair was cut in record time and with absolutely no fuss whatsoever. It's his best haircut to date!

Yesterday was Sam's first dentist appointment and I was dreading it. Up until recently, trying to brush his teeth was a nightmare, he barely let me get the brush into his mouth. We got a battery powered toothbrush which he seems to really like, must be something to do with the vibrations. But he was so good at the dentist's, Andy took him in and the dentist actually managed to have a quick look and feel of his teeth and said we were doing a good job with him! Relief!!

Sam had another good day at nursery today which was amazing seeing as his support worker (who is lovely and he's really bonded with) was in a meeting with myself, the health visitor, the speech therapist and the specialist advisory teacher for autism. When we caught up with him after the meeting he was happily jumping up and down outside in the garden.

The meeting went really well. We mainly discussed how Sam had been since the last meeting. The nursery has put in a referral for statutory assessment for his special educational needs. He really does need a lot of support. Reading his support workers statement about him and hearing the specialist advisory teacher's report was very hard, no one particularly likes hearing about their child's 'profound' difficulties or reading them in black and white. But I know they have to paint a difficult (but truthful) painting of how severe his problems are in order to get the maximum amount of support for him. Some positives were mentioned in the meeting as well though, the other day at nursery Sam tracked and followed a little lad on a bike, lost him in a crowd of children and then found him and continued to follow him to see where he was going. He's not done this before so that's great! Any interest he has in watching the other children has got to be a good thing. Lots more was said as the meeting lasted a long time so I won't bore you with the rest!

William is getting even better with his crawling and has now figured out how to cruise around holding onto the furniture. He pulls himself up onto anything he can! He's pretty much the exact age that Sam was when he started cruising too so we might have another early walker. One funny quirk he has is that he seems to have some kind of love of the hoover! Not sure why but I can't bring it out when he is around as all he does is chase it and feel it, strange child! He also finds Sam very funny and giggles at him a lot. Sam is noticing William a lot more and just today thought it was very funny when William put his hand in his mouth! He didn't try and remove it, just let him have a feel with a smile on his face. A real brotherly bonding moment!

June

Wow, I can't believe it is already the 1st of July. June has just whizzed by and I only did one post!

Well I went on the PECS workshop and it was great. I feel I've gained a lot more confidence to try Sam with it again. And also working through the practices in the workshop means at least I feel I know what I'm doing! We've bought a selection of sensory toys to try and use to start him off with the first phase. The last time we used bubbles as a reinforcer which we shouldn't have done, they are his ultimate favourite thing and afterwards we couldn't change the reinforcer without a tantrum. Now he's had a break from it all for a few months I hope we can start again fresh, not using bubbles!

Also on the course was a lovely lady who is the specialist advisory teacher for autism for our area and will be taking Sam on under her wing from September. Was great to meet her and she is going to be at our meeting next week.

William has just started crawling a few days ago and he is getting very good at it! After only a tentative few starts on his knees he's been all over the place! He also keeps trying to pull himself up onto things, but hasn't quite made it yet.

We are trying to get loads done at the moment, feels like there is so much to do and no time to do it. We want to convert the office into a nursery for William as he is not going to be able to share with Sam just yet, maybe in a few years time. We also need to clear out the loft room as it is full of junk, sort out stuff to do a car boot sale in a few weeks, and finish the dreaded DLA form (which is nearly there). As well as doing all the other bits of decorating/DIY that still needs finishing!

I am really looking forward to our holiday in a couple of weeks, just to be able to forget about everything for a week and de-stress!