Does it ostracise them from their community?

Last year about this time I was worrying about Zack starting Nursery.


I needn't have, he has settled in well and is making some progress. Woah. Hang on, SOME progress. 


Ahem, I apologise now for the blatant boast I am about to make on Zack's behalf. 


He was given some little goals at nursery when he began. Very simple ones, ones that I knew he could do as he had been doing these at home for the past six months or longer. However nursery hadn't seem him do them in the classroom and they were popped onto what's known as an IEP (Individual Education Plan).


His were to make a choice, such as choose between two toys, anticipate to something such as ready steady go, and to track or follow an object.


HE GOT THEM ALL.


......................................................I was having a proud moment. And good on him, well done Pants. I knew you could do it. 


He has new goals now. Tougher ones. Not sure if he will get these but glad they are harder. 


One is a social goal, spending time with another child and reacting to them etc. The second is to vocalise more in order to get attention. Apparently he is starting to do a bit of this, I like that they put this in his plan. The third is to try and get some more mid-line play happening, that is to get his hands together in the middle to play with a toy. 


Okay boast over.


As I was saying this time last year, I was worrying about nursery. This year I am worrying about schools. He goes to school next year. Next September and deciding on the best place for him is a hard decision. 


I took a look round the Royal School for the Blind in Liverpool. It was a wonderful place, teaching obviously geared towards children with visual impairments. Of the children that I saw a lot of them reminded me of Zack but the journey is over 20 miles, not sure if the school warrants me sending him on such a long trip each day. 


In my quest to decide on the right place I have spoken to many different people about where they have sent their child and their reasoning behind it. I have also spoken to parents of children who are considering mainstream schooling for their disabled child. And it's that very consideration that often makes me pause longer than usual on the debate between special needs and mainstream school.


You see I've looked at the local mainstream primary school. It's lovely, as you would expect from a small local school. Right for Zack? I'm not so sure. Of the special needs teachers I have spoken with most agree that the right place for a child with profound special needs is with teachers who specialise in that area. But why do some parents choose to send their child to mainstream? Is it because at the very core of their decision making they want their child to be accepted as the norm? That by sending them there they are saying to the world look they are okay, they can cope with a mainstream setting? Is it lack of acceptance of their condition the real reason behind mainstream choices?


On the other hand does putting a disabled child in a school for special needs just widen the gap between their peers even further? Does it ostracise them from their community? Does it single them out as being even more different?


I know in my heart of hearts that for Zack the right school for him will be a special needs school. There he will get the right help, the right kind of teaching to accommodate his learning ability. However in saying that, I don't want him to go to a school whereby they assume that all children with similar disabilities are the same and therefore don't push him. 


And as I know a special school will be right for him, I also know deep within my very core that he is bright and that if he has the right teacher, the right person to help him to communicate using whatever system that may be then he will surprise a lot of people. 


To me this belief is almost like saying to an atheist I know God exists. Without proof, I know God exists. And without proof I know there is more to Zack. I say to people that I think he's bright and quite often it  is met with a polite smile and a sympathetic nod of the head. I know what they are thinking, is he? Really? Aaaaah, well she probably wants to think that, gives her comfort. 


Well, no it doesn't bring me comfort. You see, I will carry on making this statement and shouting about this for as long as Zack needs me too because for now I am his voice. It isn't comfort, it isn't a need to grasp onto a slither of hope that might show that he can actually do something. No it's an understanding and quiet resonating belief that he is there, listening, understanding and waiting. 


That's why choosing the right school is important to us. And I will get the right one. And he will surprise you.

When he sits down his tubby belly squishes out of it.

Sleeping is better.  I feel like this has become a blog about sleeping but it's a big part of Zack's Zackisms.


We did go through a couple of nights last week whereby he went to sleep early but woke up at 2am. Oh no. I am not putting up with that. The going to bed late I can deal with as he then usually sleeps through, the getting up at 2am, no, I can't be having that.


Thankfully he has gone back to normal. Granted he is falling asleep on us after story time but hey ho you can't win 'em all. Although tonight he was carrying on so much that I just put him in bed and I think, he is fast asleep of his own accord.


Poor boy has been suffering a bit at the moment. He has been extra vomity. It was suggested by the doctors that we take him off his reflux meds as his vomiting wasn't as bad as it used to be. We have given it over a week to  account for any bugs he might have picked up to cause him to be under the weather but in all honesty I think that the little bit of reflux meds he was having helped to keep his stomach calm. I think we go back on them and see what happens. 


We are on half term this week. Half term. Ha. I guess my life now revolves around school holidays. How very strange. Zack has done very well at nursery. I can't say he has completely settled in yet or got used to it. Thinking about it all it's a massive change for him, he's in a strange place with people he doesn't know and no mummy. Given he has profound disabilities and one of them being a visual impairment I think he has done amazingly well.  I think in a few months time he will be more settled. However I have seen photographs of him having a good time and one of them was with some lady dancer shaking his hands, plus the other week he went for a walk in the forest, played in the sandpit and went in the light room. He hasn't time to be sad. 


Zack has a lycra suit. It looks a bit like a wet suit but it has reinforced areas on it to give Zack more support with his body. There is also extra support on his back to make it a bit straighter. The idea is that he will wear it all day every day (not at bed time though) to provide extra neuro-sensory feedback about his body and to help his core remain in a more stable position. 


I will post a picture of him in it when I get a moment. The cutest thing about it all is that he even has a little special hole cut out in his suit for his Mic-key button. When he sits down his tubby belly squishes out of it. 


So far he has had it on for an hour, two hours, four hours and five hours we are working up to eight hours. He feels very different when he has it on, definitely straighter and he sits better. Only thing is after it's come off he is more floppy than usual, perhaps this is normal, we shall see. 


OOoh and excited....it's Halloween soon and you know what that means? Yes my annual opportunity to dress my children up in ridiculous costumes. They've already worn them to an early Halloween party but that doesn't matter it just means I get to dress them up twice. And after all that it's time for ridiculous Christmas costumes. If only there were more themed times of the year. Photos to follow.

He looked rather bemused by the whole thing

The plaster was well and truly pulled off. I did it. I left him. My little Pants all on his own.


I took him into nursery on the Tuesday morning and the lovely staff there asked if I wanted to stay and go for a coffee again. No, no I said, I am going to go. Remarks were made about how I was brave and such, more like I knew I had to do it fast otherwise it would just drag on. 


I gave him a snuggle and a kiss and told him I would be back in a bit. I could feel myself welling up and with that I said to the staff "Okay I am just going to go as I can feel myself getting upset. I'll see you later."


And off we went, Scarlett and I, to console ourselves with a cooked breakfast in Debenhams. She thought it was great as she got to have toast. I actually enjoyed myself as I got some time to myself.


Two and a bit hours later we were back to find Zack sat around a table with four other children. He hasn't got a seat sorted out yet so he was in a buggy with a large snake wrapped around him. (A stuffed snake, what kind of nursery do you think this is?) He looked rather bemused by the whole thing.


Apparently this is what he got up to:


1. Tried a taste of cheese and chives but didn't like it so had some raspberry lip balm on instead.
2. Went in the sand pit and covered himself in sand
3. Had a story read to him and really enjoyed it.
4. Joined in the sing song session with all the other children and loved that, smiled throughout apparently.
5. Went in the sensory room and got annoyed at lying on the beanbag so got picked up and then was happy.
6. Played with some bead type toy that makes music and put both his hands through to join them together (mid-line playing always important).


You can see he had been a busy boy. I know it's early days but I think that they still haven't completely understood his hand actions yet. Take the sand for example, I think the scooping it all over himself which was deemed to mean I like this feeling of sand may have been him getting a bit miffed. It's been mistaken before that his pawing at stuff is him feeling things but it isn't, it's usually to tell you he doesn't like it. I think when I go back on Tuesday I am going to have another chat and perhaps stay to see an activity so that I can show them what I mean.


The other thing is his seating. He was okay in the buggy but he was lying back a bit and I could tell that he wasn't completely happy. I asked them to sit him up and hey presto bit happier. He couldn't quite see what was going on when he was a bit lower. Hopefully the O.T should have sorted out some seating for him next week. 


There is no doubt in my mind that he is well looked after there and he will get to do lots of fun things. I just think that it will take a couple of months to get to understand his mannerisms and little non-speech cues.


Our lovely private speech therapist is going to go into nursery and have a chat with them so hopefully all this will go some way toward understanding Zack.

Rip the band aid off

Well it's a week of firsts.


Summer is over, not that we had a summer. Feels like a perpetual Autumn. And with September in place Zack was back to his conductive education. I was dreading taking him back as it had been six weeks without any hardcore classes. I was expecting much crying, shouting and general I hate this commotion. Not one to stick to the plan, Zack spent his first session, smiling and having a great time. Even with his arm splints on he didn't mind. I was a very proud mummy. 


Oh and I took Scarly Bum with me as both sets of Grandparents were away on holiday's abroad. Yes, how dare they book their holidays at the same time, do they not understand planning? It's okay, I can say all this knowing full well they read this blog. Think on next time. (P.S Hope you are having/had a nice time.)


Scarlett was very well behaved. She had a great time rolling along all the mats and even joined in on the sit down say hello to everyone session. Torture school is now known as Boot Camp. We went again today. We are now going twice a week. Zack wasn't as happy during this session, but only cried a little, for the majority of it he worked really hard. I think the twice a week approach will do him some good. 


This week, Zack also started nursery. It's a special needs nursery in Warrington and it's fantastic. He has his own red school bag. It's nearly the same size as him, but I'm sure he'll grow into it. He went for an hour and a half session and I left him their for an hour on his own. I was only in the staff room having a coffee and chatting but he apparently enjoyed himself. Even went outside to play.  I take him tomorrow for his first full three hours. My plan is to leave him there on his own for the full session. You know, rip the band aid off in one painless tug. That's the plan, whether I go through with it is another matter. 


So now The Pants has a busy weekly schedule. Tuesday and Thursday nursery, Wednesday and Friday Boot Camp, Monday day of rest. What a lot of changes but all for the best. I think this will do him the world of good and also be good for me too. Plus I get to spend some one to one time with Scarly Bum who in the space of a couple of weeks has cut her first tooth, moved on to chunky food, enjoys finger foods, particularly biscuits and can almost sit on her own. Amazing. But lets not forget about the first born who now laughs nearly every day and is becoming more vocal. He really is a little star. Busy but good times.

As soon as I switched them on he put his head back and went to sleep

Zack had a good weekend. He got pushed around Bolton, all snug in his carry cot complete with waterproof protection and enjoyed a spot of people watching in M & S cafe. His dad and I on the other hand got soaked, battled through Saturday shoppers, struggled to find a seat in said M & S caf. and got stuck in traffic on the way home.

We've nearly finished his nursery now, I must stick a picture up on here, it's looking lovely. Dan spent the afternoon putting up the curtain rails, this resulted in a lot of shouting and swearing, good job the Pants has non-perfect hearing. 

Zack has decided he loves sleeping in his own room. I tried it over a few days and he seems to like his own space and his big cot. I suppose he enjoys looking at the bright walls and pictures in his room and it is better than lying in his carrycot and just staring at grey fabric. Plus I think he was sick of sharing our room, probably couldn't sleep due to his dad's snoring and frequent jumping up in a panic thinking he has lost Zack somewhere underneath the duvet.

Did some movement exercises with his legs and arms today (Zack that is not Dan), he protests a lot about this but in the long run it will benefit him. By protesting I don't mean he screams the place down, just grumbles, typical bloke really. 

The exercises involve me turning each leg inward so they are straight. Zack has a tendency to turn his knees out to the side, which makes his feet turn outwards.  Once straight I bend them up to his tummy and then straighten them flat to the floor, all this just helps to keep his muscles and joints moving. 

He does move his legs about but not lots, I am encouraged that there is movement there. When he was in hospital his legs were always bent and very stiff. Although they are still stiff now, I think they are improving. I also put the Pants on his tummy. Plenty of tummy time is good for him, it gives him chance to strengthen his neck and back muscles. He can lift his head up and turn it to the other side and back again, but it takes a lot of effort and he gets quite frustrated at it all. 

Frustration is good, it shows determination and I would rather he have fire in his belly than lie there passively, even if he does get a bit wound up by it all. If I left it and never did anything I know that he would be extremely stiff and his muscle tone would be awful.

Tried to do a bit more with his arms but he isn't keen on this and fights with me, so I just give in....for now!

On Sunday afternoon, seen as he was so wide awake, I thought I would show him the Xmas tree lights. As soon as I switched them on he put his head back and went to sleep, I mean fast asleep. I did say he was good at playing me for a fool. Never mind, I thought to myself, there is always tomorrow young grasshopper and mummy is just as strong willed as you......I think this may be turning into a battle of epic proportions.