I seem to be able to do the job of an O.T and Speech Therapist without four years of training.

Zack's private speech therapist came round to see him at the weekend for another reassessment. He still likes her. She brought some puppet toys to show him. You should have seen him. He was lying on his back and went all still and quiet watching the toys. Then she showed him some crinkly silver paper which he tried to grab several times. The upshot of all this was that she noticed how much quicker his reaction to things like his toys was, and how now we need to push him to understand how objects are here one minute and gone the next. So there was lots of showing a toy and then hiding it. Then he got tired and did  a few show off yawns to get out of his therapy but all in all it was a good session.


I went to visit the O.T at the child development centre. Not the O.T that comes and brings Zack equipment for the home the other O.T whose role I am still unsure about. 


After telling her all about Zack and how he has no sensory integration problems (ie. He doesn't get freaked out by new textures, noises etc.) She told me how brilliant I was doing. Yes, well thanks, I seem to be able to do the job of an O.T and Speech Therapist without four years of training. I questioned their role and what they did for children and oh apparently they offer advice about sensory problems and also when the child goes to nursery they look at what equipment they need. Hmmmmmm. I see. Really. Then I just carry on doing what I am doing without any help. 


I then asked at what age do they normally see children. Oh, well that depends on the referral but they very rarely see children from birth it's usually when they get to the age of two. Oh for the love of God. (RANT ALERT) Surely parents need help from the beginning, they shouldn't have to roam around in the dark working it all out for themselves, researching information about their child's condition, reading books about how to help their child. Yet it seems that way. I think (and I am not blowing my own trumpet) that if it wasn't for me bringing the world to Zack we wouldn't have gotten where we are today. The only group that have been brilliant in their support, help and ideas has been the vision team. Everyone else needs to learn from them, if they did Warrington would have an amazing support service.


At the meeting I also asked about help with toilet training. Guess what, they didn't really know how to approach this and will speak to the specialist nurse. I was told that usually it just happens when the child is ready and you can talk to them about it. Yeah, okay, I'll ask Zack if he's ready!! I said that I know there are systems out there that can help children such as Zack and I am not going to have presumptions made about what he can and can't do just because he has profound needs. The way I see it is that unless you try you won't know. And it is this conclusion that I have now reached that I am no longer going to accept doctors, therapists or whoever suggesting that just because a child has severe disabilities means they won't ever do A, B, or C. They may not, but you should never not try. Why should we fail before we have even begun. Besides I know deep down that Zack is way brighter than people give him credit for and even if we don't do all the things that I might like him to try and achieve at least we've tried. And we will never give up. Both too stubborn for that.


Oh as a footnote. Last night he was in bed for 8.30pm and slept through, ahahahahahahahahah!!! I was so excited I didn't know what to do. So I annoyed Dan who told me to be quiet so he could enjoy his quiet time. Tonight he was in bed by 8.15pm, fingers crossed he sleeps through again. Zack that is not Dan, who is enjoying yet more quiet time.

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.

Media

There is a lot going on in the media lately to do with cuts affecting people with disabilities and their carers.


I know a lot of services are facing cuts but I really did think that a P.M who has experienced raising a child with disabilities would perhaps stand to protect them a little more. 


Please take a look at this article, I find it heartbreaking to think that this lady has now reached such a crisis point that her only option is to consider residential care for her daughter. 


Guardian Article



And secondly, this article makes a very valid point about pulling services together for parents of children with disabilities. The more people who read this article the more likely it will get national recognition. 


BBC Local York



Feel free to tweet or facebook them.

Zack has been responding more

Zack has decided to have a new sleep pattern, which works for him but doesn't work for me. Since Christmas and possibly, since being ill during Christmas, gone are the evenings of putting him to bed by 7.30pm. Now we are lucky if he gets to sleep by 9pm. No matter how tired he is he will NOT go to sleep. We have tried everything, ignoring his crying, not ignoring his crying, staying with him, not staying with him. He's in bed, he's out of bed. I am hoping that this is just a phase and will pass, please let it be a phase as every night is a challenge to see if we can get him to sleep before 10pm!!


I have been trying to get a lot of appointments sorted out as come March we will all be very busy with a new little person.


Zack is going to have a sister, not sure how he feels about that but we are very excited to be expecting again, although I am now eight months pregnant I am at the stage were I would like my body back. However, so far all is going well, (fingers crossed, touch wood) and I am hoping that this baby will decide to stay there until the bitter end.


Since the last couple of months Zack has been responding more and more to his toys and his therapy sessions. When his physio came round the other week she was very impressed with how straight his back is becoming and that his hips are looser. She also fixed his standing frame as he is growing like a weed, so now looks super tall in it and holds his head up brilliantly.


Just sleep though you little bugger.

Thank God it's all over

Christmas has been not full of the joys of jingle bells but full of the woes of plague.


We all managed to get through Christmas Day and Boxing Day, Zack got spoilt rotten with too many presents. Then I managed to get ill with an awful cough and viral infection that wiped me out for ten days.


By New Years Eve the Pants had caught it and I have never seen a boy so ill in all my life. He was burning up, wretching and coughing. Managed to get him to the docs and we were given the usual course of antibiotics. He is only just on the mend now but lets just say that was the longest New Years Eve of my life, not one I would like to go through again.


Still there will be other Christmas times but unfortunately this post is not full of ho, ho, ho but moan, moan, moan. Thank God it's all over and roll on Spring is all I can say.


Here are some pics of Zacky Pants second Christmas. 

It's great when you can put someone in fancy dress and they really don't mind

Spoilt

He knew something was different

It's wrong

I think Dan enjoyed making this more than Zack

Look how much my boy has grown up

He thinks Mummy is so funny

That's the what are you doing lady look.