Keep a watch on it

You know that botox stuff? Turns out it's quite good. Normal service has resumed for Zack. Back to full on lying across me cuddles, back to standing frame, back to straighter leg (not entirely straight but much better) and back to school.

School. A new class and what's more, a new school. Kind of. The old school that he was in has moved to a new site which is lovely except for the parking facilities and the fact that it is absolutely crazy in morning.

I went in with my usual million and one concerns, Zack went in and proceeded to sulk nor speak to anyone. He has started back with two half days. Today's half day he came out looking shattered but apparently had a great morning. I am hoping this continues.

His epilepsy remains difficult. He is still having bouts of seizures, one day they are not lasting as long the next he is having longer sessions but less of the amount of clusters. We continue to keep a watch on it and I have found a great app on the Epilepsy Society website that you can use to keep a diary of seizure activity.

I hope his leg remains well but who knows. When the botox wears off it could go back to how it was or remain normal again. I am hoping for the latter.

A very busy year

Happy New Year.

2014........the year of relax!!!


Well, that's the idea. You see 2013 has been a huge year for us all in this house. We have gone through many, many changes. Other than Zack being born, I cannot remember a year when both Dan and I had to continuously make so many decisions.

It probably began at the beginning of the year with the adaption to the house moving forward. By the end of June work had begun. This continued right up until mid November when Zack's new bedroom, bathroom and our new kitchen were all completed. Even now there are still things to do with Zacks room but at least it is complete build wise.

Below is a little montage of our journey.

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Alongside this we were dealing with getting Zack's statement finalised. A job that required several amends and compromises just to ensure that he had a legal document that correctly stated his educational needs.

September followed with him starting school. A transition that had me very worried over the summer but one in which Zack took on with little fuss. I was amazed at how well he settled and how quickly he adapted to his new routine.

Scarlett also began three mornings a week at pre-school. Something I didn't envisage as being too much of a worry given her confidence and necessity for adventure. However, she too needed time to adapt. This adaption resulted in a lot of, shall we say head strong behaviour with the staff. I honestly used to dread going to collect her for fear of what she may have got up to. 

For example, during one snack time she was asked to sit down with the other children. Scarlett's response, arms folded, back turned to teacher, look of scorn as she peered over her shoulder with the comment "Huh, not a chance." You can see why I would try to creep in and out to collect her. I don't know where she gets her fire from!

Dan escaped during the month of July for a week in Whistler. Yes. A week. On holiday. Without children. Biking. I know, he is a very lucky man. He's trying it on for another trip next year but he can whistle for it, ha. (Joke).

During the mad building work we also managed to fit in a holiday to Devon. Dropping on with the weather (again) it was great. And Zack managed to do a whole journey without so much as a whimper.

All in all a very busy year. So yes, 2014, we have two big birthdays, both of us turn 40. Haaaaaaah, haaaaaaaaaaaah, that's me breathing into a bag. And I think, and I know I have said this before, but I think we are going to go abroad for a holiday.

Hope you all had a great year and I hope that you all have a fortunate, healthy happy 2014.

Fruit and nut bar

We got Zack's statement of educational needs through. Along with the proposed school which he will attend in September.

There were no surprises, it was as expected, what was not expected was how vague the statement appeared to be. It said lots of good things, but equally not specific things.

I know the assumption may be to think that the school Zack will go to will be able to fulfil his needs and provide him with the opportunity to be educated in a form that will suit him. But seen as this is a legal document I would like it to be more formal, more specific, black and white and not so grey.

So armed with a large fruit and nut bar, it is Easter I need some chocolate treat, I hide myself away for a couple of hours, reading through all the reports, making notes and then re-reading through the statement making notes.

Result is a document to the LEA detailing or requesting specific information to be written in to Zack's statement. I will now send this off and await there response. No doubt I think there will be a face to face meeting. Perhaps a battle. I don't want to battle I just want it to be right for him. He can't talk, he can't fight, I have to be his voice and sometimes it gets weary being the voice of two people.

Big bold letters

Had a busy afternoon. Turned into two simultaneous meetings with two different Occupational Therapists.

One came round to look at Zack's chair in an effort to ascertain whether it would be practical to order the same one for school. The other came round to look at what I need with regards to the adaption and hoisting.

Alongside this I had Scarlett running round thinking everyone had come to play with her and calling the first O.T nanny, despite my attempts to explain that this wasn't her name and not every lady who comes to visit is called Nanny. 

The hoist man was very helpful, sorted out what type of shower bench thingy we are going to have in Zack's new wet-room. We also tried Zack out in a hoist, well a portable hoist, kind of a big blanket that cradles him as he is lifted. He quite liked it, looked very cosy. 

I think some parents may get upset at the point whereby hoists and tracks are mounted to the ceiling. Guess it says in big bold letters your child can't and probably won't ever walk and you need this equipment in order for you to safely move him from place to place. I wasn't phased, to me it's just something extra we need in order to make our situation work. He's only little now but in a few years my back may not be saying "ohhhh go on pick him up you can take it." 

By the way did you notice I said probably never walk. Just because we have adaptions, hoists, special seating etc. doesn't mean I give up on hoping. The day I do that is the day I've given up on him and I don't know what the future will bring........

Most likely a tracking and hoist system though. 

He will start school

The good news is we finally managed to speak to someone at the hospital about Zack's EEG results and it shows that he is not in non-convulsive status. For now we carry on with the regime of introducing his new medicine. The dose he is currently on is below the therapeutic window, we still have room to increase before he will be getting benefit from this new drug. Without tempting fate, he is doing well, and all looks promising.

In other good news I finally managed to get to the hairdressers and rid myself of an awful root affliction.  Well, good news is good news.

Next year is a big year for Zack. He will start school. School. The very thought is terrifying and we still haven't made a firm decision about where to send him.
 
Whilst the decision making process is going on there is also lots of background activity happening with his statement of special educational needs. Reports have been requested from all manner of people involved with Zack including ourselves.

I have begun to write all about Zack and his educational needs but find myself saying lots of positive things that would lead you to believe he doesn't need help when in actual fact he needs lots of help. Help to access the world, help to understand his environment and a place that will see past his disabilities and understand his potential.

However for the purpose of the statement and in order to get the correct help I need to be blunt and very basic about his needs. I've put what I have written to one side for the moment in the vain hope that either a) some magic fairy will finish it or b)when I re-read it will actually be better than I first thought and not require too many amendments.

On top of school there is also plans a-foot at Casa Gould-Price. Planning permission has been granted for us to extend the house, providing a new kitchen area, oooooooohhhhh finally a new kitchen. Leaving the old kitchen as the new space for Zack's super crib and bathroom. Again. Thought of it fills me with dread. And again the thought of that is being pushed to the back of my mind until we are at the stage whereby we have past building regulations, chosen a builder and  are about to start work.

No wonder I need my hair done I am sure I will start to see grey hair soon. Failing that my four inch root problem won't look out of place when I check  in to a rehab centre having suffered a mini breakdown. Every cloud and all that.

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.

Class sizes were good

We checked out another school for Zack. This one we had heard mixed reports about so I wasn't holding out much hope, neither was Dan.


Well, well, well very pleasantly surprised. It was really nice, not too big, not too small. They answered all my questions and gave an answer to everything that I asked. Alleviating my fears and worries. Class sizes were good, they viewed communication as really important to all children. And they are updating parts of the school to help accommodate children with visual impairments. 


Even Zack liked it. It felt right. So now we have two schools to choose from and just one more to look at. The decision on where he goes is still tough and I have to consider mainstream school. But come September, he's off to nursery, I'll get through that first. I am sure there will be tears. Mine probably, not his.


Small Update


Zack continues with his conductive education. Continues to dislike it but did do some pushing through his legs when standing and when in a crawl position moved his hand forward and then his knee. Small steps but progress none-the-less.


His seizures are coming down a little with the increase in medication. As we were increasing the dosage I did notice a slight change in Zack. He just didn't seem himself I couldn't quite put my finger on it but he wasn't right. Mind you he had also been ill on and off with a cold or cough or vomity virus thing. He seems back on track now so perhaps the sudden increase just threw him out of kilter a bit. 


Sleeping. Well, sleeping is errrrm here and there. We sometimes have a good week of reasonable bed times and then we have a series of bad nights. The doctor said that if we have three bad nights in a row to give him some chloral hydrate which is a sedative. So this is what we have done tonight and bingo fast asleep. We are hoping that this will give him a good nights sleep, he will feel better in the morning and we can get him back into his rhythm again. That's the plan. 


Having Scarlett has lead me to approach feeding Zack again. I am weaning Scazzzah we are currently trying apple, bananna and baby rice. Whilst she is sat in her high chair I pop Zack in his sunbeam chair. Whatever she tries he tries. And do you know what? He is having a good go. The other day he had pureed apple and ate about four spoonfuls. I just think if he has a go he has a go if he doesn't want to or it causes him distress then no bother we stop. No stress.


And that's were we are all up to. Think I need another holiday.

This school educated them

We went to look at another school for Zack. This one was in Manchester available to children from the age of two years up to 16 years.


Now this is going to sound a bit odd but what struck me about the place was how every effort was being made to educate the children. Well, yes you may think it's a school, that's what they should be doing. What I mean is I have seen some schools and it just felt like whilst there was a certain amount of teaching going on, it seems based on creating sensory experiences for the children. This school educated them. They teach them to communicate, they teach them to read, they have music lessons. I was impressed. It was efficient. 


They didn't seem to accept that just because a child is labelled as having special needs that they are incapable of learning. They appear to make every effort to get every child to learn. 


Zack was clearly interested in what was going on. Doing his usual looking around our shoulder to check things out. You know, make sure he would find it to his liking. In one room the children got very excited about Scazzzah and came to have a look at the baby in the pram, who looked shocked to have a crowd. Zack was not happy about this. He glared at his sister. Something was not right, he's usually the centre of attention. He soon had an abundance of fans and all was right with the world again. 


We still have a few more schools to visit but so far I do like this one. 

I haven't a costume big enough

Zack went to take a look at a school this week. I know, not two years old and already checking out his education but you would be surprised how quickly things come around. This school is out of our area but I had heard good reports and they take children in an Early Years setting from three which I think is a good thing.


Dan really liked the school as did Zack. They had some really good facilities such as a pool, massive sports hall, objects of reference by each door to help children with visual impairments and all the extra support such as physio, speech and language and occupational therapy on site. 


There are still other schools to look at but overall I did like it.


In the afternoon Zack went swimming with his daddy. Yes it was the return of Aqua Zack. I didn't go in. I haven't a costume big enough to cover my ever increasing stomach size. So I sat on the side-line and watched for a bit before being told to get up on to the spectator seating and watch from afar. Aqua Zack had the pool to himself and was loving being in his water seat. He also loved being pulled around the pool really fast and they both looked like they had a good time. 


All this busy activity had absolutely no affect on Zack's ability to go to sleep at night and his iron will meant he carried on moaning and crying until 1.15am. Yep. One in the flippin' morning. He eventually went  to sleep in 10 minutes flat after some warm milk and a cuddle from me. This boy is stubborn beyond belief. And oh yes, the evening is also not helped by the fact that as soon as night comes Zack takes a dislike to his Daddy. Don't know why but he just won't settle with him which makes my life harder but then I can understand why I am his favourite....I am prettier.

I have to admit I felt incredibly guilty

The battle continues. Last night, well, last night, I have no idea what time he actually went to sleep. I think I fell asleep before him. 

We got him in bed at 9pm and then the moaning and the crying starts. We decided that we were just going to go in every 10 minutes, pat his back, comfort him a little and then leave, under no circumstances were we going to get him out of bed and spend an hour cuddling him until he fell asleep. 

That was the toughest thing I have ever done but we did it and won. I know he may have brain damage but Zack is very aware of what he wants and how to get things. He has never ever not been denied what he wants and he knows this. He knows that if he moans long enough he will get picked up. But it has to stop, he has to learn that bedtime, is bedtime. So tonight we go in for round two, we are putting him in bed earlier and doing the same thing. 

I have to admit I felt incredibly guilty in the morning and he has received a good hour of cuddles and kisses. In fact he wasn't bothered at all about last night, still his same old smiley self. 

Took him to another play-group the other day. He made a new little friend or rather this one year old little boy became a bit fascinated by him. This meant that Zack got prodded on the forehead, a finger shoved in his mouth and his curls touched. Zack wasn't bothered and I thought it was good practice for when his sister arrives, after all he can expect lots of poking and things being shoved up his nose by his sibling.

It's been a nice week (apart from the sleeping issues) as we have had no appointments, lots of them next week. This meant I have been able to do a lot more of his therapy. However tomorrow we are going to look at a school in St Helens, I know it might seem early to be considering him going to (gulp) school but I want him to go to the right one. Have heard good things about this one and they take them from three. There are still others to consider but for now this is our first look and consideration.

Zack's seizures have been increasing again

Zack is getting a new chair. The O.T (occupational therapist) came to see us to discuss what extra fixtures and fittings the Pants may need around the house. We talked about seating and she showed me some pictures of what is called the Sunbeam chair but shall be known to me as the ugly fabric chair. It has all the right padding and support to make sure that Zack is sitting correctly and not having to work to hard to keep his balance. The chair can also be put on a little stand so that he can sit at the table with us when we have our dinner. It looks very good but all I was thinking was who chose the colours, they are all so garish and will not go with my home colour scheme. Still, it's good that he is getting this seating so I'll just get past the bad colour choice.


I also asked her advice about car seats. Lately Zack has been getting very upset whilst in his maxi cosi seat. He has had it since birth and is usually okay in it, not moaning too much, but the last few times we have been out he has crunched up, started breathing really fast and then made a loud crying noise. He got so worked up that by the time you get him out he is sick. I imagined that it was because he was too big for it and probably uncomfortable in it. So I asked her to take a look. We popped Zack in his car seat, she took one look and said, yep, I think he is too big for this now. I think the give away was the fact that Zack looked like a squashed up fat child in the seat, even his cheeks were squished together.


Zack now has a new car seat. It's bloody huge and a pain in the arse to put him in as it is still rear facing. However, he seems happier in it and has not done any screaming. Yet. I tested it out when I took him to school on Wednesday. 


At school he learnt how to take his socks off his feet, well we helped him pull his socks off his feet. He also did his stretches and thought it was very funny when they did the riding the bike song. After all the stretching, singing and stirring of a bowl of soup (don't ask), Zack flaked out so we came home a bit earlier. We also brought back his first painting for his daddy to take to work.


Zack's seizures have been increasing again. We have asked to see the neurologist a bit earlier than our planned appointment. Dan spoke to him and he  said that there are definitely other things we can try for Zack. He was also pleased to hear that Zack is smiling and laughing. He suggested that this may be because his brain is beginning to compensate for the parts that are damaged or that the hypsarrythmia is getting a bit better, or it could be both. Either way it shows signs of development in Zack which is a good thing. I just don't like seeing him have the spasms again. I was getting to used to hardly seeing them at all. I have learnt that it can take a while for things to get right. With some children you have to add medications, up some doses, lower others before you can get some form of acceptable levels. Somebody did tell me that it is a rollercoaster of emotions and this is quite true. Just when you think you are getting somewhere you suddenly shoot back down again. But we are trying to remain positive and take encouragement from Zack.


Just too add coldsville has entered the house again!! I blame the infected children at school.

maybe tapping his hand is like morse code for him

My telephone stalking gained results. So far we have managed an appointment with Zack's physio, arranged an appointment with the O.T and met our Family Support Officer. 


The physio appointment went well. Zack was awake and alert and she was pleased to see that once relaxed he happily raised his neck to look round the room. Previously Zack used to hunch his shoulders up with a tendency to drop his head forward. He still does this a little but not as much. I told her he is tolerating his tummy time a lot more and even tries to lift his head up. 


We have had a little break-through with Zack's head holding and as much as I would love to say I discovered this trick it was in fact his daddy who worked it all out. Dan was looking after Zack one Saturday afternoon, he had all his toys out on the floor and was trying to encourage him to lift his head up off the mat. He tapped Zack's hand and he suddenly pushed himself up and lifted his head. "Look at this" Dan shouted,


 "oh yeah" I said, "he is lifting his head, he does that for me sometimes." 


"No, watch when I tap his hand, he does it all the time." Sure enough he did. 


I tried it myself today. I had Zack lying on the floor, arms in front he wasn't really trying so I tapped his hand. Tadaaaaaa.....he pushed himself up and lifted his head. Blimey, maybe tapping his hand is like morse code for him. But the even bigger break-through was today, he held is head up for at least a good minute, it was brilliant. I hope he keeps improving with this as then we can work towards crawling. 


We had a visit from the Family Support Officer today, otherwise known as a Social Worker. Most folk would worry about such people calling round to your house but I'll take all the help I can get. We discussed Direct Payments so that I can get extra help and support and I went through the umpteen people that Zack visits. She had already spoken to one of the doctors about Zack which was a bit strange as this doctor only treats him for one area and doesn't know him that well, but then I thought well maybe she just needed some background to his condition. I also had a good moan about the fact that in our area there is no parent support or baby and toddler groups for children with disabilities who fall into the early years category. We also discussed nursery and I told her that I wouldn't be happy with Zack just going into a mainstream nursery as I don't think he would get the one to one support he needs. She asked if I thought he needed one to one support. Well yes I do. It's not like you could pop him into a class and expect him to take on board all that's going on, he needs someone to work with him. Anyway, he isn't going into a nursery and by the time I think he will be ready he may have developed even further. 


Zack and I went to school for the second time. It was brilliant. The little class is so lovely as is his teacher and her assistants. Zack now has his photograph on the picture of the school bus which is on the wall. He was also given his own little bag that has a new hairbrush, toothbrush and face-cloth inside. We then had to get out each item and brush our hair, clean our teeth and wash our face. Well Zack's not got any pegs to clean yet but he did stick his tongue out and brush that. 


We also sang some nursery songs but by that time Zack had fallen asleep so I chose a huge chicken hat for him to wear for when we sang Old McDonald, I think he may have chosen the cow hat but he will fall asleep and leave me in charge of dressing up outfits.


We went on to do stretching and then he woke up just as we were smelling different foods. After that we all sat in a circle and had a snack. Zack had a little bit of a yoghurt but didn't really want it so I ate it for him. Whilst we were waiting he had a look at a fibre optics lamp and then we had art time. Zack painted his very first picture. We used cut up fruit and veg to dip in the paint and press onto the paper. By the end of it Zack had a lovely selection of circles. His picture now has his name and date on it and will probably be on the classroom wall. Then it was home-time, he got given a wonderful sticker and was chosen as best student in the class. Well done little man. The class is really great I understand what they are doing and why they do what they do in each session. It's good that he is experiencing new things and I am also getting new ideas of how to work with him. Never thought I'd say I was looking forward to going to school.

Zack is on his full dose of Vigabatrin. Rather than knock him out he still remains fully alert. He only falls asleep in the day for about half an hour and still goes to bed about 9pm then up at 7am. Seeing small seizures but nothing too huge I don't think as of yet it has stopped his spasms but our EEG is booked for the second week in February so we shall see then. 

He wasn't for building a snowman though.

It snowed. Zack and I have cabin fever. Well I have, Zack quite likes the warm as do the cats who have developed an inability to go outside in the snow. One in particular, Willis, does the best impression of an RSPCA advert that if I didn't bring him inside the neighbours would think he was suffering abuse. He sits outside in the snow holding one paw up and shivering, he had only been out for 30 seconds!

Zack and I marched up the garden when it was snowing. The Pants liked it, probably because the whiteness made everything so bright. He didn't mind the snowflakes falling on his face and did his best at keeping his head upright to take it all in. He wasn't for building a snowman though. No, back into the warmth to play with his new favourite toy, Mr Dog.

I showed Dan how much he liked his doggy toy and how he smiled at it when he made his barking noise. I overheard Dan asking Zack if he liked it and then saying this doesn't mean you are going to get a real dog you know. Dammit.......I thought I had sneakily found a way of getting a Puggle. Zack and I will have to work out a new plan.

School phoned up to tell us that they were closed because of the snow. This made me giggle, not because they were closed just because Zack's school had phoned up.....he's only 11 months old!! We shall go next week though.

We have started Zack on his Vigabatrin. So far so good. But it is only a small amount so we will have to wait and see what happens when we increase it next week. His seizures have not been very many about two to three a day and when he does have them they are quite subtle.

I can't believe that he will soon be one. When you take stock of what has happened to him you can see how very far behind he is compared to other children. When I think about this it makes me sad but then Dan reminds me of all the things he is doing, things we didn't think he would ever do. For example he without doubt knows both of us. Probably me more than Dan but then that's because I am lucky to spend more time with him. I think, but can't be sure, he is starting to understand his name. It may just be my voice but he will look at me when I call his name. We didn't ever think he would smile or laugh and he does. He shows pleasure in things and shows interest and enjoyment, it is subtle but you can tell the difference. He is sitting up on your knee and can sit there whilst you support his lower back. He doesn't cry at tummy time any more and sometimes manages to push himself up. So I suppose whilst these are small things they are good steps forward.

I am also starting to realise that whilst some areas of the NHS are good there are others that are not so good and you don't always get the help and support you need. Sometimes it is assumed that Zack is similar to other children and you end up getting grouped as one. This is no good. Not all children are the same and I wish that they would try and consider the individual rather than the masses. I could go on but I don't want to turn into a rant.