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.

Got rid of lots of options

That last post was my 200th post. Wow. 200 posts about one little boy.


Well, here's to the 201st post. Zack remains reasonably well, although he still isn't quite right. I can't put my finger on it but he just isn't 100%. We have an appointment with his consultant at the Child Development Centre soon, will ask a few questions then, perhaps she can shed some more light on things. 


We are currently looking at the dreaded world of adaptions. Yep, adapting part of the house for Zack so that he can have easy access to his bedroom, toilet, shower etc. We've been thinking about all this for some time. Come up with lots of options, got rid of lots of options and now down to one, possibly a second, lingering in the background.


The main one includes us paying for and having an extension to house a new kitchen. We were going to get the kitchen refurbished anyway, I had the spark of genius to suggest that the old kitchen would be a great room for Zack. Obviously without kitchen facilities. 


We would then build out into the back garden a new big kitchen/family room with French doors going outside, again easy access to the outdoor area for Zack.


We had the OT and the architect round. After lots of deliberating it seems it can be done. But there are obstacles, most of which are all too dull and boring to go into here. Upshot is, major work, massive work, all very stressful. 


Well, more stress in our lives, of course that's what we need. It was all getting a little boring round here anyway.


We now wait to here about the next step from the OT. I am trying not to think about it, best not to get worked up before even a brick has been removed.

Now for the shock

Zack thought we hadn't been to hospital for a while so worked up a real treat of a virus over the past week. 


An episode of difficulty in breathing due to a blocked nose, high temp and no sleep for almost two days had me whisking him off to the open access ward for some answers.


We weren't alone for too long a little friend we know well ended in the next bed. Hello if you're reading, hope you feel better. Thought it was slightly dramatic just to have a catch up but it was nice to chat to someone who understands what you're going through. 


Two doctors, one x-ray, one urine test and one lot of ibuprofen later we were sent packing with some antibiotics and instructions to drown him in saline nose drops to soften the mucus. Turns out the X ray didn't show definite signs of a chest infection but little spots that may suggest something could turn nasty. Using the theory better to be safe than sorry we took the antibiotics in the hope this may clear up any nast hanging about. 


Poor boy, he's just caught one thing after the other, probably our worst winter yet. I think it's all to do with him going to nursery and mixing with lots more children. I am hoping that the more he catches the stronger his immune system gets then again, I know there have been some really horrible bugs out there, I've had them twice and took a while to shift them.


Oh and to top this off Scarly bum has been poorly with her own virus giving her the trots and a lack of appetite. Although it didn't put her off eating half a Freddo bar and ice-cream. 


Corner now turned, fingers crossed, seems like both of them are on the mend. I know Zack is feeling a little better as I have had some smiles here and there today and the Scazlet has been stuffing her face. Aaaah back to normal.  




Now for the shock......Zack fell off the bed!


Dramatic Pause.


I know. He doesn't move much. How did that happen? I propped him up in a sitting position on our bed with a pillow either side of him to stop him leaning. Scarlett and I went in to her room, next minute I heard, bang, bang, ten second pause and then whoooooooh, whoaaaaah. 


No, I thought, it can't be. Whisked up Scarlett went running in to our bedroom to find Zack in tears on the floor. Immediately scooped him up checked for bleeding, checked for bumps, checked for red marks. Nothing. Five minutes of cuddles later he was happy again. 


So what happened? He was a foot away from the bed in a sitting position. He wasn't lying down ready to roll. I mean it's bad, but in a way, it's good. It means he can move somewhat. Now when I put him on the couch I have three massive cushions on the floor and give him firm instructions to stay. 


I told his Dad what happened, all the while Zack was listening and kept smiling at the phrase "I don't know how he did it". 


Little minx, what is he up too?

Well, it beats Disney

If it's not one birthday it's another. 


Zack's sister turned one on the 1st of March. One. Where did that year go?


She had a fantastic day. Zack spent the morning at nursery. Enjoying World Book Day dressed as Dracula. Well, it beats, Disney any day, plus I was being eco-friendly by recycling Halloween costumes. Eco-friendly and too tight to buy something new. 


World Book Day? We never did that when I was at school. 


Scazlett went for breakfast then on to the Jungle. By Jungle I mean your basic soft play area. She spent the hour scooting round the place and shouting Dad, dad every five minutes. He was allowed to stand in the background but not with her, she didn't want her style cramped.


We picked up Pants, went home, had lunch then off out to the park. It was a lovely day, we showed them the animals, well a lot of chickens and ducks really, maybe a few goats and one pony. Zack went on a swing that was more or less a round tube with some netting across it. He loved it though. 


You'd think that is enough for a one year old. Oh no, Queen Bee had her birthday party too on the Saturday. It was very, very busy but she loved it, quite the little social butterfly. Zack had a great time up until about 4.30pm when he decided to vomit and not stop vomiting until about midnight. 


He then past the baton to me whereby I stuck my head down the toilet from 5am until about 3pm. Either we had both picked up a bug or we had eaten something rotten. Either way I felt like I had the hangover without the joy of the drink the night before. Mind you on the bright side I got to have a massive lie in and spend the day in my P.Js. Trouble is Dan is well due some big Mountain Biking expeditions, fair enough, I think he can be afforded a day off or two. 


Here are some pictures from the exploits.

This was also done in the form of mime

We took Zack to the Liverpool World Museum as they have a planetarium, aquarium and a special dinosaur display until April. 


After getting up, sorting stuff out, we finally managed to get out of the house about 10.30am, our original plan was on the road by 9am.....yeah, right. 


I nearly killed us by cutting up a bus. The bus driver said I was mental. This was done in the form of a mime, he placed his finger to his head and twisted it back and two. I told him to piss off. This was also done in the form of mime. I raised my hand and stuck up two fingers. 


I got the car parked in a space very near to the museum so we didn't have to walk too far. Dan got out of the car and said he was just going to calm down. His heart, apparently, was racing. I thought he was being a bit of a drama queen. I had everything under control.


As we strolled over to the museum I thought hmmm, there's a lot of people here. Thought it would be an idea to get a locker. We didn't have a pound so we sweated in our coats for a bit. Right then, I said lets go and get tickets for the Planetarium, they're free. Off we sauntered over to reception.


"Hello, can I have four tickets please?"


"No. Sorry. They've all sold out."


"What? There are four shows. Every one?"


"Yes. It's half term, people have been outside before we even opened at 10am."


Oh God. HALF TERM. I turned and looked at all the kids, the hundreds of kids and their families. What had we done. 


"Oh what a shame, it's his birthday today and he has a visual impairment, I know he would love the show."


"I'm sorry we can't give any more out."


We left despondent. Dan turned to me and said,


"Well, you tried all the big guns there didn't you? Birthday and disability."


"Yep, and where does it get you? Nowhere. Come on lets go to the lifts."


The lifts. Oh the lifts. Five floors of this museum and two lifts. The lifts that stop on every single floor. The lift that can only fit in two, perhaps, three buggies. Do you know how long we spent going up and down in the bloody lifts? At least a good hour.


One of Zack's highlights of the whole day was using the (I have to say) very good disabled toilet on the first floor. That had a bed that you could lower and raise. Zack thought that was brilliant. 


"Look I said, he loves this." I enjoyed at least a good five minutes worth of moving it up and down.


"Oh yeah", Dan said, "another lift to enjoy, do you know what? This shouldn't be known as the World Museum it should be called World Museum of Lifts."


Yes it was busy, but we managed to look at the small aquarium, tiny in fact. Zack liked that. 


We did the dinosaur exhibition. Zack loved that. We on the other hand thought the adult price ticket was excessive. Scarlett couldn't give two hoots about any of it.


We managed to have a family meal in the cafe and get a table. We even got a locker, eventually. 


We saw the museum on the local news the next night they were talking to parents there about access to free facilities during the half term and the growing financial problems in the UK. I said to Dan that I am glad they didn't meet us we must have been walking round with a fixed grimace on our faces. Plus, if they had asked a question they would have got twenty minutes on the use of lifts!


Zack finished his day off with a visit to nanny and grandads, where he proceeded to throw up twice. Second time over their sofa. This may have been a prelude to the vomit bug that entered our house for the next few days.


He got some lovely cards and presents, thank you everyone. But by far his best present was his Kota the Dinosaur, take a look at this, we've been after one for ages. That was his special present off Daddy.


Kota


He also got some of the hard stuff, cash. A Buzz Lightyear off his mummy. A garage with big cars and other little bits and bobs.


Here's some birthday pictures. Happy 3rd Birthday Zack. A memorable one to say the least. xxx

By this point he was knackered

What's that I hear, a dinosaur perhaps?

Zack and his dinosaur

Where did that year go?

Who's going to be three on Monday........Zacky Pants, the Zacky Pants.

Wow. Where did that year go? Lots of changes for the Pants, lots of new things and as always lots of challenges. 

A healthy year more or less. A happy year and yet again, doing things to astonish us. 

As always here's a little montage of his past year. We shall be off out for the day. Post to follow. For now enjoy the show. 

Complete with frozen yoghurt

We've been back to boot camp. 


Don't think Zack was too impressed, he did better than I expected though. I thought there would be more moaning, he did protest a little and ignored almost everyone. However it was good to get back into it all.


Think we are going to go just once a week for now and see how it all goes before going back to twice a week. 


We bought a buggy pod this weekend. What is that you may ask? Only a handy little device that is a child's seat with wheel that attaches to most single buggies, giving you two for the price of one. Oh here take a look.


Buggy Pod


Now I don't have to balance Scarlett in one hand, Zack's nursery bag in the other and push Zack's Swifty chair just to get him into pre-school. I can just pop the buggy pod on strap them both in, drop Zack off still in his chair, unclip buggy pod (obviously removing Scarlett first) and take pod with me, leaving Zack and chair behind. Brilliant. 


We now have one wonderful double buggy for sale. The Mini City Jogger. Did a great job for the short term but it needs to be sold, so if anyone knows of someone in need drop me a line.


After the pod buying we all went off for some family lunch. Zack was very well behaved, a gentleman, a good little boy. Scarlett on the other hand was reasonably well behaved, but played up a bit due to the excitement of eating out with the whole family. She even had a full child's meal complete with frozen yoghurt (which she loved). Actually, frozen yoghurt was a hit with the Pants too, but I don't think his sister was up for sharing the love.


Zack's had a good day seizure wise and is improving with his blocked nose cold, so less snorting all round. 

On a bum note

On Sunday we all went to Space with our friends from Families United


It's a multi-sensory play centre in Preston with soft play, ball pool, heated water bed and a huuuuge slide.


Zack loved it and so did first time visitor Scarlett, take a look at them enjoying some bonding time on the big swing (Zack's favourite part of the visit).

On a bum note (pun intended), I got an unsupportive result back from the O.T with regards to my request for suitable seating for toilet training. Apparently management (whomever they are) don't think he is developmentally ready for it. 

Truth be told I knew I would get that answer. Helpfully it was suggested I just try him on an ordinary potty chair from Mothercare and if I am successful a suitable chair can be looked into. On the other hand use his Disability Living Allowance to buy the chair as this is what's it's for. Either way they are not going to offer any help with regards this matter. 

I have asked for the relevant members of staff higher up to write to, don't think I will get anywhere but I still want them to consider this matter not just for Zack but for other children like him.

Seizures remain the same. Definitely longer, they last about thirty seconds now so I am starting to think we need to re-look at medication again. 

Come Friday Zack is going back to boot camp. We'll see how we go, I'm glad really as we haven't seen the physio for ages and we need to get back on track with some therapy for him.

Busy times for the Pants and a birthday coming along very soon, can't believe he will be three in a couple of weeks. 

Run with your gout

Where have the weeks gone? They've disappeared into a black hole known as my life.


We've had a very stressful few weeks. It hasn't helped that Scarlett got the cold beyond all colds. Well, what do we expect when you take her to a soft play area within which she finds the dirtiest looking ball to eat. Oh and follow this by letting some little girl kiss her on the lips a few times. 


This then led to Zack getting sick, vomiting and having a general snotty cold. Which he is still getting over. This then leads on to more seizures and us holding off on increasing his medication just in case him being ill is the cause of the influx in tonic spasms.


And then, I get sick which is even worse because dealing with two crying children whilst your head is banging, your throat is sore and your nose is snotty is bad, bad news.


Okay. Everyone breathe out because things are now a little calmer.


Scarlett's cold is gone. Zack is on the mend and off the Clonazepam. He is actually off it a bit quicker than I would have liked simply because the chemist gave us a different strength of his medicine for his repeat prescription. This small matter, I only picked up on when I looked at the label. We've been giving him half his dose for a few days so now we just dropped it off completely. 


His seizures are becoming longer in length but not as many. Still too many to be having so I think we may have to increase the medicine. I have a gut feeling though that this one doesn't work for him. Another one we can chalk up on the board. 

It's nice to see him getting back to himself though and showing his rather wicked sense of humour. His poor daddy you see, he has gout. Quite painful I believe. One evening, Scarlett was going to practice her usual act of pulling herself to standing by grabbing on to the T.V stand. Not good when you have a flat screen tv wobbling and threatening to smash on top of her head at a moments notice. 

I shouted for Dan as I had Zack sat on my knee. 

"Come on, quick, run with your gout, run with your gout." To which Dan hobbled as fast as he could and at the same time Zack went into a fit of hysterical laughter. Proper hahahahaha laughter. Obviously seeing his father in pain is extremely funny especially when his mummy tells his daddy to speed up using his gamy foot. What a strange child. It was funny though.

We had the pee and poo nurses round today

Zack's back at nursery. So far he's played outside. Had a massage. Decorated a biscuit. And played in the sensory room. 


I was worried about sending him back after all the problems with his seizures but the staff were happy to care for him and he's in safe hands. I think he is getting more used to it now. Reports back from his main looker afterer is that he's doing lots of smiles and laughs and even shouts when he doesn't want to go in his seat. That is one little boy is getting his own way.


We had the pee and poo nurses round today. Okay. The incontinence nurses. They're the ones who hand out the free nappies. Apparently you only get four, that's all you're allowed. I said I didn't want any yet as Zack can still fit into the big size nappies. I didn't feel comfortable taking them whilst we can still get hold of the nappies to fit him. 


We discussed toilet training. They started off by saying, until a child is developmentally ready or mobile it's hard to potty train them. I said, well some children can't walk, talk or sit independently but they understand what's going on so surely they can be potty trained. They did agree and said that they think it's every child's right to try to be potty trained. Well okay then.


Moving the conversation along I discovered there are potty chairs (a bit like the chairs used in conductive education) that they have given to families to try to get their child to learn to use the toilet. I told them that the O.T couldn't provide a chair for Zack as there wasn't one small enough. I think the O.T is thinking Zack needs a chair that is more supportive whereas I know with help he can sit on one of these special potty chairs. 


This is the one I think they mean.


Potty Chair


Long and short of the conversation was that the P and P nurse is going to speak to the O.T about getting Zack one. She also said you never know learning to go the toilet might be his forte in life. Hmmmmm, I think Zack might be destined for greater things than learning to pee and poo on a potty.

New Plan

Happy New Year. Bit late I know but we've been very busy.




Despite Zack's sedate nature we had a lovely Christmas. Even managed to have a Christmas lunch, just Dan and I whilst both children slept. That never happens.


Zack had started responding well to the medicine but the side effects were awful, floppiness, sedation etc. This all lasted for about eight days then whack the seizures crept up to the 80s and 100s again. We nearly took him in to the hospital but to be honest I thought there was no point. It was a Bank Holiday and probably skeleton staff on, all they would do is give him rescue medicine. 


I waited until the next day and spoke to the epilepsy nurse who in turn got hold of his neurologist, who in turn came up with a new plan.


The thinking was that the Clonazepam had done it's job for a bit but then his body got used to it very quickly. His new drug, Keppra wasn't up to the required limits so that needed to be upped a bit quicker. 


Thus far we've kept the Clonazepam the same and upped his Keppra. We were meant to up it again on Saturday but we hung back because his seizures have slowed down. Today he's only had about 15 which is brilliant compared to what he was having. I am going to ask about doing a slower increase again just to see if we can knock off a few more.  I am hoping that it stays this way for a while but you never know with epilepsy it can all go to a bit rubbish at the drop of a hat. 


On a good note Zack continues to sleep well and is in a lovely mood. Here's some pictures of our Christmas time. Enjoy.

Oh Happy Days

They're all mine

Loving the bike

Mmmmmpfffff......that's what the horse is called.

Loving the truck

Christmas.....it's hard work