We had Archie’s annual review last week. At the end the head asked us what we felt was important for Archie in the future. My answer was quite simple, he has to be able to get out and access life. To do this it is essential that he learns to behave appropriately, particularly in public (which of course can be aided by better communication etc etc).
So onto this week and it’s half term. We’ve had our moments; a rather noisy public meltdown when we had a difference of opinion about where we were heading for example, but in general he’s relatively easy to get out and about, especially if I have a helping hand from a PA courtesy of direct payments.
So far we’ve headed to the beach (of course) where Archie accosted Tim the surf coach and helped himself to his car. And we’ve been on the Plymouth Wheel and skipped happily along the Hoe (until we had our difference of opinion). For now his behaviour is manageable. Of course the tut tut brigade will always tut but most of the time he behaves in a way that I think is acceptable. We’re aware that could change and I remain an enthusiastic supporter of The Challenging Behaviour Foundation. They do good work, and provide some excellent resources.
For the moment we enjoy the good times and assume they’ll continue.
Thanks so much for that link. I hadn’t come across TCBF before and they look like a great resource!
Thanks for this. I hadn’t heard of the challenging behaviour foundation. My son has high functioning classical autism, so I’m off to look them up now.
Although having read their first page I’m not sure that we’d fit into their mission statement. My son would probably only be classed as ‘moderately’ affected.
Their expertise is probably more in the area of severe learning disabilities. Although some of their factsheets (free to download) would probably be useful for anyone.
High Functioning autism is not classical autism. Look up definition of classic autism. It’s kanner’s autism. The most severe kind.
I think the terms can be confusing, if you read the original paper by Kanner the children are actually pretty high functioning, certainly a lot higher functioning than Archie. And I have met some children who are high functioning in some ways but have huge challenges accessing life. I understand Katie-Jo’s point, that The Challenging Behaviour Foundation isn’t particularly aimed at the more able children. It’s was set up to support those who like Archie have severe learning disabilities, but I think some of the fact sheets can be useful to anyone dealing with CB’s wherever they are on the spectrum.
I’m just going with what the paediatrician wrote on his notes.
They say he functions well considering the severity to which he is affected. They go on to say that he has has classical autism and sensory perception problems.
We have been on the GAPS diet for a while now since that diagnosis though, and the improvement has been astonishing, which is why I now call him high functioning.
He has quite different symptoms to someone with asperges, but is no longer banging his head on a wall and vomiting if there are too many children in a room!
Ah dented plaster…. Weirdly Archie went very head bangy (onto concrete) when eating peanut butter. It was organic ground peanuts, nothing added so sure not what was in the peanuts that set off the reaction.
Happy autism awareness day!
Yeah, GAPS is basically an elimination diet were you work out what triggers reactions and avoid it for a while.
Hopefully that gives the gut some time to heal, and you test regularly on the skin for reactions and slowly introduce those foods again to see if they are tolerated.
It’s hard work, but it’s totally changed out lives. The Crazy thing is reactions from other people when they haven’t seen him for a while. They can’t stop enthusing over the changes, but because it was gradual there were stuff my husband and I hadn’t picked up on. His eye contact has been great recently and he is even starting to show compassion towards his little sister without being asked.
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