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.


Anonymous said…
Hello - I've been reading your blog for ages now - I have a little boy whose about 6 months older than Zack and is in many ways quite similar. I must say that I'm very impressed by your energy - you get Zack around and about so much - even donkey riding. And now I find out that you were doing alot of this whilst pregnant! Very exciting news - many congratulations.

A few things to mention - firstly I totally agree with your comments about the therapists that say "you're so good at all this you don't really need me at all" - it's a particular bug-bear of mine. I have no training and obviously cannot anticipate things or recognise, and respond to, symptoms until told. I sometimes think it's a justification for not seeing us regularly.

Secondly, thanks for writing about the Cerebra SALT funding - I'm putting in for this today. And for all the other tips, especially the riding!

Thirdly, just to mention, most people assumed my son would have a lower cognitive level than he does because of his physical difficulties. I had to, and still do, keep on pointing out what he's understanding and managing to do. Now he's two pretty much everyone is having to recognise that he's a bright boy and the discussions are now about giving him access to the right kind of experiences and education. I'm glad I didn't listen too hard to those early views.

And finally, we've just started going to School for Parents - it's a conductive therapy approach and quite task based. We're very impressed. Part of the morning's routine is to encourage the kids to sit on a potty. They are free sessions and you can find if there's a class near you through the Scope website: Help and Information; Education; Conductive Education (sorry couldn't get it to paste the address). But I'm sure you've probably explored this already - it may be similar to Rainbow House. And, of course, I should imagine that you've other big things to think about right now!
Thank you for taking the time to write such a lovely comment. I am glad you are enjoying the blog and applying for the SALT vouchers definitely worth it. Love CEREBRA they have been very helpful.
I did go to a school for parents a while ago at a school, it was really good and we enjoyed it. We stopped going though because it was a 40 minute journey and well Zack still isn't great in the car.
I do plan on picking up with Rainbow House that do the conductive education as I think they will help Zack in areas where he isn't getting help. Your son sounds lovely and I do hope he continues to be as brilliant as he sounds. See us parents do know better. Linzi x

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