Wednesday, 23 November 2011

Sorry, bit of a rant tonight! OT has upset me...

So... spent considerable time yesterday with a close friend, whose child has been diagnosed with dyspraxia nearly a year ago. Since then they have moved house, and 'all of a sudden', there are all these social deficits becoming apparent.

She had a Parent's meeting at the new school, he started about 6 weeks ago, and found out he has begun to ask to stay in the classroom during playtime and lunchtime, so that he doesn't have to mix with the other kids. He is having great difficulty making friends, or playing with other children, and she is now looking back with different eyes on earlier experiences that she had considered normal, like the fact he always played with reception age children at school, rather than the kids his age. He's starting having extreme tantrums all evening after school days, over nothing at all. As for obsessive interests, I just had to ask "did he ever line up his toys" to be treated to a rant about how the lines of trains/cars used to go all over the house, and God forbid anybody ever moved one.

Obviously, there was lots of other stuff we talked about, and I gave her the Tony Attwood complete guide to Asperger's, cos it's a good starting point for a parent. But I'm slightly annoyed with her Occupational Therapist, who is telling her that there is no need for her to seek assessment for autism for her son, because his dyspraxia diagnosis already covers all his behavioural problems.

I've heard this song before, and came to the conclusion that there are some issues here about what is best for the child. If he has autistic tendencies, or even may be diagnosed as autistic, will it not help this child to get the best out of his school, if his teachers have a better understanding of the difficulties he is facing? Will it not make it easier for his parents to help him out if they understand why he is having meltdowns left right and centre, and why he has such an idiosyncratic approach to, erm, everything...

Why would anybody advise against assessment for a child who is struggling to such a noticeable extent in areas of functioning which are only touched on in a dyspraxia diagnosis?

I am now wondering if there is a professional issue here, because OTs cannot diagnose autism, and they are seeing lots of kids with coordination problems AND autistic traits, has the diagnosis of dyspraxia/DCD been expanded to include these children? and is this in the best interests of these children? Is it the best way to recognise the complexity of the problems they face?

And with all due deference to OTs, who do amazing work, and have helped my son enormously, they are not doctors, and do not have the understanding of autism that a qualified and specialised doctor can have. They cannot offer therapies which tackle all the aspects of autism, only those which are related to the coordination aspects of it.

OK, I know I'm getting a bit ranty here, but I do feel that we need to be in touch with the right professionals, who understand all the facets of the issues that our children face, whether psychological, social, emotional, physical or otherwise. Obviously OT support is a cheaper alternative than assessment by a paediatrician or other suitably qualified doctor, that doesn't make it a replacement for such an assessment.

Tuesday, 22 November 2011

Worrying about my parents for a change!

So... I remarked to my best friend the other day, we are in a kind of honeymoon state, kids are neither toddlers nor teenagers, and parents are not that elderly (yet).

I didn't mention, although it's in the back of my mind, that my mum has had a spate of forgetting things lately, and my Dad got angry with her the other day for messing up his plans by telling somebody the opposite of what was supposed to be happening. He told her he was getting worried about her and if she didn't improve he was sending her to the Dr!

Today, I saw her briefly, and she was really anxious because she had lost her reading glasses. Not as in simply misplaced, she remembers wearing them, and has no memory of taking them off, and they appear to be nowhere in the house.

I should perhaps explain the background to this, which is that my parents don't do emotion. I haven't seen my Dad angry for 25 years (coincidentally since I was a teenager!) and I rarely see my mother express any emotion other than mild irritation, even though she has her 17-year old granddaughter living in the house, and my sister (with the major mental health problems) is there more often than not. Seeing them both upset to that degree is very unusual.

 My mum is usually sharp as a tack, she obtained a first class honours Maths degree through OU while she had 3 kids under 5, and has always retained that analytical ability. I know that they are both aware of the implications, they have lots of friends, who have suffered the usual round of age-related illness, including dementia.  I'm sure they don't want to actually acknowledge it and are busy pretending my Dad's outburst last week never happened. I'm also sure my mum just needs me to tell her that this is just a normal part of aging.

I did some reading about dementia last week, because I am now officially the Family Healthcare Professional. Forgetting stuff like glasses is a normal part of aging, frustrating as it may be for my totally and utterly organised and together mother. But if they turn up in the fridge, and she starts mixing her words up, and struggling to do her Sudoku 3 x faster than Dad, then we need to worry.

However, on the NHS site, they say that being anxious about memory loss is an indicator for a visit to the GP. So that means I need to have a chat with them both, probably soon, to see if they think that that's where we're at. Probably separate chats. I did start to have a heart to heart with Mum yesterday, but my sister turned up uninvited and joined in. That's what family's for!

This isn't a conversation I want to have, the implications are huge, Mum holds everything together, like all Mums, but more so, as she's primary carer for my sister and her daughter. Having said that, my sister is finally medicated and acting totally normal, and her daughter is 17 and thinking about applying to University. I don't call on my Mum for support, except the usual chit-chat, which goes both ways. But the idea of needing to be on hand to help her out is kind of nice. I owe her loads, her calmness in a crisis has always been an inspiration! Having spent some time now nursing elderly folk in my general placement, that doesn't freak me out any more.

No idea where any of this is going, as always, no crystal ball on hand. This is part of the journey I suppose, just need to keep on keeping on.