Special Needs Joy

Every week during term time, Matthew & Daniel go to a special needs dance class at the Deeside Dance Centre in Banchory. Its organised by SCILLS, a local charity for supporting special needs children. There’s been a steady core of about half a dozen kids going, with a varying array of needs, though up until recently its been the boys ASDs and 3 Downs girls. SCILLs have been getting their message out there though and there’s been another four kids that have been coming regularly. I think two of them are ASD and the other two are Downs.

The great thing about the mix of special needs is that the boys have learned that first of all, they’re not alone in being different. There are others there in the same boat as them, and they don’t need to feel isolated. Its an environment where they are safe and comfortable with no one around to judge them. Second, they have learned to tolerate the differences in others. To them, the others in the class are who they are. The boys don’t see a girl with Downs, or a boy with an ASD. They see a girl with brown hair, or a boy with a red shirt. Like the boys, their special needs are just part of them. Its great to see the boys just accept other people for who they are. Its a lesson a lot of people would do well to learn.

On Saturday, it was the end of their current six-week block (another block starts next week) which meant a little performance for all the parents, grandparents, brothers, sisters and carers. Because the class is up to double figures now, there were a lot of people in the studio. The first thing that struck me was how free all the kids seemed. They recognise that they’re in an environment in which they can fully express themselves without fear of hearing “you can’t do that.” And it showed. All they could see was people there encouraging them to let themselves go, appreciating their every effort. You could see the happiness on their faces, and it was infectious. They may all have special needs, but the key word is “special” and that’s what I hope they were feeling. They are all special in their own ways, and its crucial that they be allowed to express themselves and understand who they are. It really was amazing to see their joy coming out.

It was lovely to see the SCILLS organiser come out for the performance (thanks to Jane’s blog postings on SCILLS) to see what a huge difference their support is making for all the kids there. Not only are the allowed to express themselves, but its helping them develop just a little bit more. Its been a terrific opportunity for them all, and its been grabbed by several pairs of hands. A little bit of help really can go a long way.

Matthew’s School Struggles

On Friday I had a meeting with Matthew’s class teacher and his SEN teacher. It was quite positive and productive, so we will go forward to a full-on meeting with them, the Head Teacher & Education Psychology with something to work on. Its been a year coming though, and the worry is that Matthew is losing valuable time with his struggles. Matthew is typical ASD – if there is such a thing. He finds it very difficult to vocalise how he feels so a year ago when he managed to tell us how he felt he was struggling with his reading, it rang immediate alarm bells. If it got to a point where Matthew is worried and can tell us about it, its bad.

His teacher at the time told us she had no real concerns and that it was just a confidence thing, but as the months rolled on – and Matthew again vocalised how he felt he was struggling – it looked to us that it was more about lacking the fundamentals and not about confidence at all. We decided a review meeting with the school was in order after a playground chat with his teacher when we were told Matthew had been put on to more basic reading books. It was an alarming turn of events. It would seem that the school now share our concerns over Matthew’s spelling and reading, although his numeracy skills still appear to be strong.

When he is reading, you can tell he’s not reading to the end of the sentence with his eyes, and he’ll either tail off, or will simply make up what he thinks should be there. In spelling, he’ll often transpose letters, and fault that the school have started to notice. I know the last few weeks have been very stressful for Matthew – his flapping has become much worse since the turn of the year – but I think his struggles at school are leading to generally increased levels of stress for him. He’s not particularly enjoying the learning experience right now although the space project they did before Christmas really engaged him and showed how capable he really is.

This school session has seen Matthew get much better support than he saw in P3. His SEN teacher is excellent and is aware of his difficulties and will be seeing him for the next two years at least, which is encouraging. It may be a year down the line, but it would seem that all acknowledge that action is needed to arrest Matthew’s decline over the last year. The frustrating thing is that he’s very capable. Application has always been an issue for Matthew. His class teacher has noticed Matthew applying a range of avoidance tactics to get out of doing work he finds difficult. That’s a problem we regularly face at home. Recently Matthew has been forgetting to take his homework book. I asked if an adult could remind him towards the end of the day, but as I was saying that it dawned on me that he was deliberately leaving it at school knowing full well that it would mean he’d not have to do his homework.

Its all a sign that he’s not happy at the moment. He’s been shaken by Jane’s post-op illness, but its been going on a lot longer than that. He’s isolated at school – he’s now admitted to his teachers that he has no friends at school – and I wonder how much that is affecting him academically. The school think he’s capable academically – I agree – but are more concerned about his social interaction. I think the two are linked and that perhaps if he can create bonds to some of his classmates then he may be more willing to engage in his school work. Its a bit frustrating that in his school reports, there are references to “circles of friends” – that’s never been the case in our experience, but at least now we’re arriving at a consensus.

Matthew is getting helped in class more now, and that’s all to the good. We need to move that on – when we do, I’m hoping Matthew will really re-engage again, and his time at school will be a lot easier for him.

All in a Day’s Work…

As many of you will know, being a parent is hard work! Being a special need parent, that’s even harder! Our day can begin as early as 430am and sometimes end as late as 10pm. It can be a thankless task, as our children can often take things we do for them for granted, although it can have its moments.

The weekend just past was the weekend of Daniel’s birthday. His actual birthday was on Friday, so of course he was on a high the whole day. He was ecstatic at all the Star Wars toys and DVDs he landed with. It was lovely to see him so happy, that we knew it was all worthwhile. The 36 hours from Saturday lunchtime, well, that was a day’s work and then some!

First of all, the new bed we had ordered for Daniel arrived on Thursday, so Saturday afternoon was spent dismantling the old one with Daniel and Matthew’s help. Of course, all of the heavy work was left to me! I didn’t mind that though – at least the boys knew when something was too much for them, and it helped keep them safe. We were hard at it for the better part of two hours, because it needs breaks for bouncing on the trampoline. Next up was taking all the cardboard we’d piled in the car round to the recycling centre to make room for the dismantled bed, old dishwasher and assorted junk so we could take that round to the household waste/recycling centre in Tullos. Of course, that mean lugging the dismantled bed downstairs and into the car. The weekend was involving just a little but too much hard work!

It continued with Star Wars day on Saturday. I’d promised Daniel (and Matthew) that we’d watch at least a couple of the movies to mark the big day. Their Granny (Jane’s mum) doesn’t like Star Wars at all, and will often be incredibly negative about it in front of Daniel. Its something he enjoys (much to my delight) and he shouldn’t be so discouraged from following one of his passions. Well, after a few minutes of Star Wars, Granny disappeared upstairs, and we were left in peace to enjoy Star Wars. It was like being re-introduced to an old friend. We usually watch Empire Strikes Back, but as it was Star Wars day, we kicked off with the original movie. I’d almost forgotten how good and enjoyable it is. The scene where it cuts away from the impending torture of Leia, using the clanging shut of her cell door and the guard’s footsteps – superb. But that’s well beaten by Han Solo flying in out of the sun to save Luke’s neck at the last second. I think we almost cheered! Granny re-appeared by about 830pm, but by then, it was onto Empire Strikes Back! I think she gave up after that! The evening was a real boys get together. Matthew, Daniel & I lounging on the sofa, drinks, some snacks, and Star Wars on the TV. This was work? 11pm, and it was bedtime for the boys, which left Jane & I with Star Trek on Film 4!

The Sunday though, we that was hard work! Mandatory trampoline bouncing invariably gets a Sunday underway – after the boys have me make them soft boiled eggs! We’ve been getting eggs direct from a local farm lately, and they are lovely. Even though I say so myself, they were beautifully cooked! Yolks only just set, they looked great. That and trampoline, it was time to get going on putting Daniel’s bed together – after the task of getting all the million pieces that go to putting it together upstairs first of course! That done, work progressed fairly well, It was a two person job, but I decided that the boys and I could pull it off. We’d gotten about half way when it was time for a break for more work – Daniel’s birthday party at the soft play room of a local restaurant. They were brilliant and Daniel and chums had a great time (http://jas2jar.wordpress.com/2013/05/06/party-time/) Its harder than you think when you’re supervising about a dozen or so kids! The staff were great though, and Daniel loved it.

Back home then, but no rest for the weary! Back to Daniel’s semi-constructed bed. Its harder work than you think holding pieces in places while you try to use a screwdriver that should be held in a third hand! Push, pull, lift, hold, screw in, thump, unscrew, thump again (swear words optional) then screw in once again. Still, by 730, it was all done. Daniel helped me finish it off, so he had a big hand in it. The mattress went on, and he could try it out. He was thrilled. It had been a long 30 hours or so, full of hard work, but all of the things were more-or-less just another day’s work at home. We do these things, but sometimes we get thanks for it, and its worth it all. Daniel – unprompted – drew me a card with hearts & kisses all over it with the message inside reading, “To Daddy, I love you from Daniel.” Yes, it can be hard work, but its all worth it.

Coping with the Stress that Comes with Autism.

Recently, Jane attended a stress management course run by SCILLS Deeside (http://www.scill-deeside.co.uk/home) at Camphill School at Miltimber, just outside of Aberdeen. We’d gone so long without any meaningful support for dealing with Matthew and Daniel. It might be them who have the autism label, but it’s the parents that have to deal with what that entails. SCILLS had come up with the goods with a special needs dancing classes. We’ve been involved in other activities with Matthew and Daniel that are aimed at supporting them. But what about t he parents? Its about them too.

Most parents can prepare themselves for the rigours that children can bring. You never stop worrying about them, and despite what some in government might say, money can become a real issue that can cause many a lot of stress. But few parents can prepare for the stresses of having a special needs child. There are so much we (special needs parents) need to consider, prepare for, find solutions for that parents of neurotypical children don’t have to. If your concerns are getting the kids out of bed for school, or getting them home at a decent hour when they’re out with friends, then those are issues that can be dealt with, as in most cases, the child will (eventually) see reason. But ASD children present a range of difficulties. Some will be able to imagine the stress of not knowing when your ASD child will suddenly go into meltdown and physically attack you with whatever comes to hand. We’ve been hit by fists, feet, toys, cups…we’ve even had a table knife shoved in our face – literally.

The meltdown is our nightmare. As ASD parents (generalising again) we must be on constant watch for signs of them. Being on a state of heightened alert almost constantly can be incredibly stressful. Walking on eggshells around the children for fear of setting of a dreaded meltdown. They make even the most mundane tasks difficult to deal with. A meltdown in the morning can mean getting them dressed for school becomes a physical battle. Last week, Daniel had a meltdown just around breakfast, and the only way to get him upstairs and get him dressed was to man-handle him throughout the entire process. Its incredibly exhausting. Then its all over as suddenly as it began, but we are still highly agitated and stressed of course. The adrenalin from the episode is still surging around our bodies, and its difficult to calm down.

Night times can give rise to stress for all of us. Matthew has never been a good sleeper, but now the night terrors have returned. He’s yelling in the night any time from 9pm to 4am. Its hard to deal with him properly as we’re all tired from constantly having our sleep broken. That tiredness would make anyone short-tempered, but when you’re dealing with a child that’s yelling and is impossible to calm down at 3am, well let’s just say stress levels are very high indeed. Dealing with wet PJs when they can’t get to the toilet in time, not eating their tea, refusing to come indoors, throwing object s around the room. Its hard to keep your cool under a constant barrage like that.

This is where stress management comes in. Its something I think few special needs parents have the time to consider, but its support that’s so badly needed for us to make sure we don’t snap and take our frustrations out on our children. Its not their fault they’re ASD. Its just part of who they are, and the wiring in their brain prevents them from seeing the world as we do. It prevents them from being able to cope with sudden changes to routine. It won’t let them understand why the Wii has to go off at bedtime. Its up to us to be more understanding, and that means we need to cope with the stresses that ASD children bring.

From Jane’s course at Camphill (http://basijas2013.wordpress.com/2013/04/21/i-am-not-a-bad-parent-just-challenged/) , basically, when a child enters meltdown, it can be a sudden rise to the peak of the meltdown if we fail to take preventative action early enough. When they explode, our stress levels are already at a high level, and it doesn’t take much time until we explode. But because an ASD child’s meltdown can end as suddenly as it began, they will start to come down from their emotional high just as we’re in the process of exploding from the stress we’re being put under. The end result is that we’re not in a position to be rational with a child just coming down from a meltdown, and we’ll shout at them, put them on the stairs/send them to their room etc. All that’s doing is pushing them back to their emotional high, thereby prolonging the meltdown situation. What does it do? Just adds to the stress we’re trying to cope with. It’s a vicious circle.

Jane has made me see that managing our stress and keeping as calm as possible to help the child minimise the length of their meltdown can ultimately minimise the stress we’re trying to cope with. Hopefully that will make us better at the job we’re doing with them. As Jane’s blog post says, we’re not bad parents, we’re just being challenged. Its great to know that there’s support out there for parents and carers of special needs children. If more could be done to help us access that support for ourselves, it will benefit us all in the long run.

Show Time!

Today was a special day for Matthew & Daniel. It was the recital at their special needs dancing class. All of the hard work they and their classmates had been putting in over the last couple of months were all building up to this moment. How would it go?

First of all, we need to say thanks to the NAS (http://www.autism.org.uk) for doing everything and more for autistic people and their carers, SCILLS (http://www.scill-deeside.co.uk/home) for organising a special needs dance class,Comic Relief (http://www.comicrelief.com/) for the subsidy and to the Deeside Dance Centre (http://www.deesidedancecentre.co.uk/) for the facilities and brilliant teacher. She in particular was fabulously patient with our boys and the girls attending the classes. Her enthusiasm and theirs were a perfect match.

Overall, the class gave them a brilliant focus, and an outlet to let them express themselves. Being expressive is something that Matthew in particular finds very hard, and the dancing has been something where he can let his hidden side out. Its a great sensory experience for him, and gives him a chance to indulge in spinning on his bum, one of his favourite forms of letting his brain shut down so his body can catch up.

We arrived in good time – i.e. with just a few minutes to spare so there’s not much waiting around time for them. There was a bit of a hold up to let the dance teacher and two of the Dance School’s girls that help her in the SCILLS class could hide easter eggs for the end of class egg hunt, but eventually in went the boys and the 3 girls in the class. Then in filed the parents and siblings! The teacher let the kids know how the recital would go, and off we went!

First up was the teacher, helpers and class in a circle. One person would go into the middle, and the rest would follow their actions, with each person getting their turn. Naturally it was Daniel who went first. Then came a dance based on the weather (what else in Britain!) using scarves – a lot of expressive movement. After that came what looked like a fairly complicated dance routine. Each child had their own moves they would all copy along with stock moves. Matthew in particular was clearly loving it. He was concentrating on getting it right, and was beaming throughout. Its lovely to see that side of him – a side we don’t see that often. Its been the best thing about the dancing – seeing the pure enjoyment they have got out of movement and dance. In fact it was wonderful to see the fun they were all having. It was exciting to see what these kids could do when they were being given the chance.

The whole thing finished with a game which was a fun way to finish of a great session for the children involved. Matthew in particular enjoyed interacting with the other kids in the class. The social interaction has been very difficult for Matthew, and continues to be so, but he became comfortable in their company at least. But, even though he can’t always reciprocate friendship, he caught the eye of a lovely Downs girl who made every effort to hold his hand! Its testament to his gentle personality that he finds it easy to attract other to him, even though he doesn’t realise what he’s doing.

It was brilliant to see the outcome of their hard work though. Matthew & Daniel were pleased that we enjoyed it. Our thanks go to his fab teacher for her patience, her helpers for being so good with the ASN kids, and to SCILLs for making it all possible. Roll on 27 April when it starts all over again!