Hiya, been so busy over the last few weeks we just haven't had time to really sit down and write a new post. I'll try not to go on too much and will start with the important bits first.
At the end of July we took Patrick for a check up at the Child Development Centre. Patrick's regular paediatrician is on long term sick so they've dragged another out of retirement to deal with her patients and although I have no doubts that this Dr has a wealth of experience, he really was 'old school' with his opinions and his manner, and Martin and I both found the whole appointment incredibly frustrating and a bit of a waste of time. The Dr got my back up from the very start reffering to Patrick's symptoms as problems and repeatedly using the term 'handicapped' which isn't at all politically correct these days. I asked for some advice regarding Patrick's eating as he isn't really making progress with his chewing and although he eats well we has to have everything pureed. I had hoped to be refered back to his speach and language therapist. Instead what we got was a 10 minute advertisement for a blender! The Dr hadn't listened at all, I already give Patrick the same food as us and puree it at home, in the end I gave up trying to make myself heard.
Also, he tried to tell us that "children like Patrick" wouldn't benefit from a programme like Brainwave and that we should not waste our money! According to this guy Patrick comes under the catagory of children where the damage has been done and there is little chance of him learning new skills as his epilepsy would interfere and wipe out anything he learns. We were a bit taken aback by this at first as none of the other Drs or specialists have said this before or been so blunt. We're definately going to disregard most of his comments though as he has no idea about what Patrick is capable of; he's spent five minutes looking at his file and formed an opinion after comparing him to other children he's seen. After voicing his views against programmes that use repatition he then proceeded to get on the floor with Patrick and showed us excersises to do with him and said "with enough repetition he'll eventually be able to do it himself"! A total contradiction! We know he didn't read all his file up to the part where it explains the progress he's already made as he still thought Patrick was on drugs that he came off months ago and he seemed unaware of the results of the most recent MRI which showed the white matter loss had in fact stopped. Patrick's neurologist has said that Brainwave could be good for him and she would be the best judge really.
Anyway, that appointment as I said was a waste of time, all we got out of it was some advice about Patrick's constipation and the confirmation that Patrick's development age is still around 3 months. And like we've always said, we're not bothered by his development age, it doesn't get us down to know that he's so far behind and is only making small progress, Patrick is Patrick and he is a happy, contented little man with a big character so that's alright by us.
So with all that off my chest I can move onto to the fun stuff!
We've had a really busy summer holidays so far, we couldn't do anything last year being stuck in Southampton hospital all summer so we've really tried to make the most of time this year. We've not been able to get away but have had lots of family days out including trips to Monkey World, Adventure Wonderland (with Coping with Chaos), Gunwharf, Ten-pin bowling and yesterday we had a fantastic day with friends Linda and Mervyn, mucking about in the water.
Patrick has been on fairly good form over the last few weeks, he even managed to stay awake for the whole of his visit to Julia's House last week and had everyone saying what a joy he was when he's awake!
In between all the fun days out we've had a few physio and portage sessions which have gone OK, Patrick has now been given a Corner Seat and a better Standing Frame so as ever our living space is getting smaller and smaller. We are still battling with the council over our housing needs, this will take time but we're confident it will all be sorted eventually.
2 comments:
redlandsHi Gemma, Martin,
Just read yr latest blog and, like you made my blood boil. I had a similar, yet no-where near as awful, "chat" with Andrew's new consultant (Dr Keaton, who he had been under since birth has retired - he was so so knowledgable and very understanding and supportive). He wasnt actually there at Andrew's yearly check up and got an assistant to do all the test, then wrote to me giving me a 2 line assessment which actually told me nothing. I got on the phone to him and he "graciously" spared me 5 minutes to talk about Andrew and his condition.... Sheeesh!!! So I kind of understand how frustrated and annoyed you both must have felt.
Nice to hear you have been able to get out n about this summer (despite the rain!)
Anxious week for us as we wait for Andrew's GCSE results... fingers crossed!
Needless to say, you just have to keep on badgering drs, authorities and "the system" as it always seems to appear that unless you do its not always guaranteed you get their attention! Good luck and as ever... you are all in our thoughts.
Kevin, Nadine and boys x
Been there too at times - in bad times I think it's always like that....everything is text book treatment rather than addressing individual needs.
Grrrrr
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