Applause, very good old people

I have blog guilt. 

Not posted for a while, but I have been busy. It's hard work trying to entertain two small creatures. I have discovered that Play Doh holds the key. Well for the smallest one anyway. 

Zack loves squishing it and Scarlett, she likes to sniff it, walk round with the pot, sniff that, then attempt to eat some of it. 

Pants has been a bit poorly. He developed some high temperature, vomiting, upset stomach bug. The doctor gave us some antibiotics just to be safe. Safe of what? Probably to ensure that if he did have anything chesty it didn't get worse or develop into anything nasty. No idea what it was but it seems to have disappeared as quickly as it arrived. 

He's been in a lovely mood these past few days. Very smiley, very happy, very responsive. We even left him with Nanny/Grandad Price. And Nanny Price did all of his afternoon food on her own, medicines too. She was extremely pleased with herself. We have to give some credit to Grandad Price as he mixed up Zack's food in the blender. Ahem. Stand up, applause, very good old people, proud of you. I can say that, I know they read this. Hahahaha.

Zack's trike has arrived. My, oh, my it's fantastic and he loves it. But I am not going to say too much now, I am going to film him on it for his blog. So watch this space.

We are off on our hols next week, North Wales, not too far but far enough for it to be a change of scene and a break for all of us. Excited. Yes. 

Final update, Zack went to see eye lady. Usually he reserves all of his ability to see for home this makes me look like a deranged liar when I tell people what he can and can't do.  However today, what a brilliant little man. She actually saw him, watch, follow, smile at and laugh, yes laugh at the toys. She was really delighted with his progress. She still thinks he is a cheeky boy....I've said that all along. But that just makes me love him all the more. 

Six long weeks

It's the summer holidays. The "Summer Holiday" season has always eluded me, I didn't really get why people would go on about it. I get it now. 

Six weeks of having both children to look after, for six long weeks. I think I got used to having three mornings with just one child when Zack went to nursery. I understand why summer could be so difficult, thought it would be nice to have six weeks of nothing. It also completely throws your routine out of the window. 

On the plus side some nice things have happened. Dan is off for a week which means days out all together, and days to ourselves. 

This weekend we had Scarlett christened. We were really pleased to have it at the same church with the same Curate that Baptised Zack. It was a lovely day and Zack was brilliant. Scarlett was, as usual, fabulous. Here are some pictures for those of you who haven't already seen them on Facebook.

Looking fine and dandy

Don't think she rates his outfit.

Nanny

We have also been making use of the fantastic Warrington Sensory Play Centre in Woolston. It's a soft play area especially designed for children with Special Needs. During the holidays they have been running a session on a Monday for a couple of hours called Dolphins (no idea why we have that name but no matter). It's for children with complex needs. As well as the usual soft play things they also have a sensory room, an area for use with ultra violet light, a quieter dark area with two projectors.  It really is a brilliant facility for the Warrington area. 

Scarlett loved it. But the Pants, he thought it was brilliant. They have a very large soft play slide. I let Zack go down on his own. He shut his eyes the whole way down then laughed his head off at the bottom. This called for a lot of slide activity....any excuse to play really. 

The Trolley Buddy

Going the supermarket is quite easy with an able-bodied child. 


Get out of the car, get a trolley, stick kid in trolley. Go shopping. Get kid out of trolley. All done.


Not so easy with a child that has cerebral palsy. They don't sit very well in the trolley. They tend to fall forward, or to the side or even fall out of the trolley. Nope, you can't just pop off to the supermarket. 


Then, I spotted something developed by a fabulous charity called Cerebra 


I have mentioned them before. They helped us out with a grant so that we could pay for private Speech Therapy for Zack. I swear if I win the lottery they will be getting a huge sum of money. 


They have a development section within their charity that design products to help children with disabilities access things in life that most mainstream kids take for granted.


A parent had asked them to design something for their child so that they may use a supermarket trolley. They did. They came up with the Trolley Buddy. It is so simple. A little portable seat that you take with you to the supermarket. You just pop it into the trolley, strap it round the back, pop the child in, strap them up and taaaadaaaaaaaaa. Child goes supermarket shopping. 


I phoned them to see if I could buy one. They sent me one free of charge to trial. Have I told you how much I love this charity. They have a waiting list for them and are looking for a commercial partner so that they may produce them. So Tesco, Sainsburys, Morrisons, Waitrose, come on buy the Trolley Buddy. Have them to hand behind your counter. Help us mums and dads out. We just want to take our children shopping.


Here's Zack testing his out. 

In me Trolley Buddy

Slightly Leaning in this isn't just any supermarket trolley

He loved his shopping visit. He had a smile on his face all throughout the store. Only hitch was at the end. Zack's tone is quite tight, his legs got stuck trying to get him out of the trolley.  He needed two people, one to lift him and one to try and get his leg to bend. He couldn't stop laughing. His poor legs are all bruised but he found it highly amusing. Might need to re-look at that. The other hitch was he needs just a little bit of side padding to stop him leaning. However a slight prod now and then and he was back in the centre enjoying the ride. The next test will be sitting next to his sister in a double trolley. Think she'll like the company though. 


Thanks Cerebra. You are brilliant.

Does this make me his carer?

Last week was Carers Week. A national campaign aimed at highlighting the many millions of carers in the UK.


This is taken from their website www.carersweek.org 


" There are almost six million carers in the UK ¹


 People providing high levels of care are twice as likely to be permanently sick or disabled ²

 Every year 2 million people take on new caring responsibilities ³

1.25 million people care for more than 50 hours a week ¹

One in eight adults in the UK is a carer ¹

3. 3 million people juggle work with caring responsibilities for a disabled, ill or frail relative or friend ¹

The main carers’ benefit – Carers Allowance - is £55.55 for a minimum of 35 hours, equivalent to £1.59 per hour

58% of carers are women, 42% are men ¹

1.5 million carers are over the age of 60 ¹

Carers’ unpaid contribution is £119 billion each year, yet the decision to care can mean a commitment to future poverty. Many give up an income, future employment prospects and pension rights to become a carer ⁴

¹ Census 2001
² In Poor Health, Carers UK 2004
³In The Know, Carers UK 2006
⁴ Carers UK / Leeds University 2011


I am classed as Zack's carer. I hate that term. When asked who is his main carer I say myself. But I don't view myself as his carer, I'm his mum. I am supposed to look after him, who else is going to do it?


This got me thinking, how many other mothers or father's view themselves as carers? Do we see what we do as something that we should get paid to do? Do we think about the amount of money we are saving the government?   


I don't want this to be a pity post.  I suppose I wanted to blog about it because the issues highlighted by the Carers Week campaign are things I never consider. Perhaps I even feel a little embarrassed about it all, I mean why should I receive monetary help just for being a mum?


Yet if you look on the flip-side. My son is three years old and still requires the care of a newborn child. It will most likely always be that way. This doesn't make me sad. It doesn't fill me with a sense of tiresome dread. To me it's just the way things are and will be. In a strange way caring and loving Zack has given me happiness that I don't think many people will ever truly experience. 

I have the added help of his Father. A secondary carer, who receives no monetary help. He continues to work full-time as well as par-take in his share of looking after Zack. I bet if you asked him does he see himself as a carer the answer would be, no I'm his dad, this is what I am meant to do.


I have no idea how other carers feel. There are many different types, those that care for elderly relatives, those that care for their spouse. And most concerning of all children who care for their own parents. And with each caring relationship comes a variation in stress, hours and free time. 


Whilst trying to write this post I have been in and out of young man's bedroom trying to get him to sleep. And he is still wide awake shouting about it at 10.15pm. No doubt when he finally does drop off he will be up again in the night. Perhaps something many parents deal with, perhaps not, perhaps he doesn't fully understand bedtime routines, perhaps he does and is just being a little git. Does this make me his carer?


During the week I take Zack to hospital appointments, we see therapists of all kinds, I discuss adaptions to our house, I try to figure out which of the two schools available to us offer the best option for a child with special needs. Does this make me his carer?


I undertake countless hours of therapy with Zack. I am his physiotherapist, his occupational therapist, his speech therapist, his sensory therapist. Does this make me his carer?


I feed him all his food and his water. I give him his medicines at the correct time. I monitor how many seizures he has in a day. I research products and equipment that could help him in his daily life. Does this make me his carer?


I know every minute detail of that boy. I know the meaning of every small tiny movement. I know what he needs and what he is trying to say without him uttering one word to me. 


All of this would in the eyes of some make me his carer. But all of that to me just makes me his mum. He's my boy what else am I supposed to do.

The break did us all good

We've been on holiday. Oh I do beg your pardon, we've been on a mini break. To the Lake District.


Found a lovely little self catering place to stay, which was so cosy, comfortable and clean that I could quite happily live there forever. Well, okay not forever, but definitely for more than a week or two. Liked it so much I am going to give it a little plug. Here's the link.


Ivythwaite Cottages, Windermere




Zack had a ball as we all did. He has been so happy and in such a good mood. The break did us all good. 


We've been on boats, in aquariums, visited animal parks. 


Here's the pics. Enjoy.

The Windermere

The Animal Park

Got myself a set of wheels from the gift shop

Afternoon tea for three

Zacky and Travel Teddy

On us boats

Fishes

Otters bum

Fishes....again.

Thank you soft play Mummy

Someone posted this on Facebook.


9 Ways You Can Help A Special Needs Parent


Some of it I like.


For example No. 1, No. 3 and No.8 and No.9.


Especially No. 8.


See My Child. I think Maria has eloquently put what I see too. My son. 


It's true for some people disability equals uncomfortable conversation, awkwardness, not knowing what to say, and so better to ignore than to engage. Sometimes people don't see the child, they see the disability first. They don't see the person. 


However I do understand the other side to this statement. As parents of children with special needs we can't stand and berate our friends or strangers because they may feel awkward. Before our lives change, I wasn't 100% comfortable with disability, I didn't understand. But I do now. And it's up to Zack and everyone who cares for him to allow others that distance, to allow others to ask questions and to educate those who may never experience what an absolute honour it is to care and love someone as brilliant as the Pants.


Everything is relative to the individual. It doesn't matter if you worry that your child may have a cold, it doesn't matter if you worry that your child isn't sitting yet, it's important to you and your world. And no it does not upset me to hear you share your stories of your children. 


Recently we took Scarlett and Zack to a soft play area. You know, one of those squishy, sticky, padded cells. Basically somewhere Scarlett can fall over and Zack can slide, roll and drown in a sea of coloured balls.


A young couple came along with their baby girl, a couple of months younger than Scarlett, we got to chatting as you do, usual thing, ages, milestones blah blah. I told her about Zack and just said he had Cerebral Palsy. Stock answer usually. It would take me an hour to explain all his added extras. 


When I say to someone he has Cerebral Palsy you usually get the ohhhhh polite nod and then silence. I usually change the conversation to ease their awkwardness rather than us stand their smiling at each other.


Not this time. This stranger, this lovely girl, asked me lots of questions about him. Asked why it happened. Asked if he liked his nursery. Asked if I still worked. Her other half was also interested. We spent the next half hour talking about Zack. Towards the end of the conversation she apologised for asking so many questions. 


Sorry? Sorry? No you carry on, I love talking about him. I don't mind at all, it was so refreshing. 


That young mummy was going back to college to train to become a nurse. I think she will be a very, very good nurse. Thank you soft play Mummy for taking the time to talk to me about my son. 

Battle, bureaucracy and bollocks

Where have we been? It's been a while since I last posted and to tell you the truth I haven't had much spare time.


Most of my time has been taken up on the battlefield. Just one ridiculous fight after another.


On the plus side Zack has wangled an extra day at nursery, he now attends three mornings a week. He's not very happy about it. I am.  He also has a new looker-afterer, he's not very happy about that either. As his dad said, he has to get used to different people. I suppose he needs to just shut up and put up then. 


Met with the ENT doctor about Zack's glue ear. Really wished I hadn't met with the ENT doctor about Zack's glue ear. I swear I am talking a different language in there as he doesn't seem to hear me. Pun not intended. I was asking for gromits for Zack, he said they wouldn't make a difference as his hearing is the same even with hearing aids in...do you remember this discussion from about a year ago? I kind of get what he means but at the same time, how helpful is it to have glue ear, surely leaving it for three years isn't healthy. 


We also discussed Zack's snorting at night. Again, took me about ten minutes to get him to understand. We are having a sleep study at some point to see what's happening. He recommended nasal decongestants, which by the way I have since found out you can't buy over the counter as he suggested, oh and nor can my GP prescribe them, so ball back in his court. Do you see why I haven't time to blog. 


Adaption is back to feasibility stage. At least I managed to get grants lady round to look at the house and make useful suggestions. She was very helpful and is returning with her boss due to the complicated nature of the house/job. 


At this point, all of the above can go and shove itself up it's own backside. I have had enough of all the battle, bureaucracy and bollocks. Sometimes I think people that are involved in lives such as mine need to experience the reality of it all. Things need to be simple. Easy. Co-operative. 


Ha. Wake up. When will that ever be the case. 

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.