Lock down, Autism and Dogs


Sometimes I go into 'lock down' when encountered with this huge thing called autism. 

One friend of mine who's son is in the same class as Joels said she goes into 'shut down' mode when her son displays so many autism behaviours that your body somehow protects itself from this destruction that happens right in front of you and you just have to close up shop and let it happen.  Examples are when Joel has got creams out and smeared them everywhere, emptied food from kitchen cupboards, peeing on the floors around the house. 

That last behaviour of Joel's though has really got to me as I can't seem to control that one and I am supposed to re-direct him to the loo and not say anything but my instinct is saying the opposite. 

Joel can pee in the toilet but for some reason he's got other ideas at home at the moment.  The good news is he's not doing this at school as he has one on one support there but at home it's a different story.  With Holly (7) and Max (3) around too I can't supervise Joel all the time so he'll just get on with these behaviours which with a kid of 2-3 you'd expect maybe, but not one who's nearly 10.  Yikes.

I have been to see Karen incontinence nurse of West Sussex this week to discuss strategies.  Pictures, signs, rewards (we decided non sugar polos could be an option and Karen suggested haribos).  Please Karen can you just come to my house and be on his case and not leave it all up to me?  That is just not going to happen.  Like most of these services I'm left with paperwork but not results.

This is why so many things in life which would have worried me before are so not important now so that's a good thing I guess.  

In my pilates class this week I saw a fellow autism mother who has a child Joel's age who goes in a push chair when she's out as she can't control her child if she was walking so I felt grateful we can walk with Joel when we're out.  Her child also has seizures so it's a constant strain for her and I could see a haunted look on her face this week.  Do you offer sympathy?  Yes but not pity.  Anything but that I've had enough dished out to me for a lifetime so not giving it to her.  Though I do talk to her when I can about what's going on with Joel so that she can maybe chat to me.  We don't really know each other so it's not like just because you both have something in common you have to automatically set up a support group.  



Holly, Blue, Joel and cousin Bea at Granny and Grandpa's in Cornwall

Holly wants a dog for her imminent birthday coming up in a week.  I said we'd get one if it was trained and looked up dogs for the disabled as you can get dogs for autistic kids now.  But they are based in Oxfordshire so will only give dogs to autistic kids in the area.  They offer something called PAWS http://paws.dogsforthedisabled.org/ so am looking into going to a workshop to find out about how to train a dog for a child with autism.  I think I must be mad to be thinking about this but Joel, Holly and Max love dogs and love their Grandparent's dog Blue and I do think a dog could help Joel with communication and maybe these behaviours he gets into.  Having a dog may break the cycle of these behaviours and bring so much to the family life maybe disentangling the many parts of autism.  Then again it may be like toilet training not one, two but three members of a family and not so into that part.

Respite in Portugal for two nights

I think I lay here glued to the spot like this for two days solid while Jake was working and I was so grateful for the break.  Don't underestimate the power of rest and recuperation.  I am very proud of my toenails too.

Holly's blog

 

 

Holly my seven year old daughter wants to start a blog.  Here's her first page as she envisages it.

 

Here is her First Holy Communion cake design for a few weeks time. 

She's a very industrious girl and always has a project on the go.  She has a list of all her teddys and what they are called and how old they are.  (she has a lot of teddies).  So I was surprised at this book she has about them.  I don't remember doing any of this.  In any case I preferred dolls and she prefers animals.

Holly is the best sister Joel and Max could have.  At a recent parent's evening her Welsh teacher was welling up talking about her and said she is kind and a peace maker and also funny at the same time.  She's got amazing qualities.  Whether Joel brings them out in her I don't know but I do know she's one in a million and I'm very blessed to have her.

 

Music evokes memories

No other music is more profound to me than Delius 'The Walk to the Paradise Garden' as this was the sound I heard when walking into the church at my father's funeral. 

It was heart wrenching and at the same time a comfort and empowering to hear this music my father so loved.  The music reached a crescendo and it all seemed quite dramatic but I'm sure that's how my father would have wanted it as he loved Delius On hearing the First Cuckoo in Spring.  I love it too and play it to think of him.  This is probably the closest I get to him when I hear this and Gershwin and other music he loved like Holst's Planets. 

The Academy of St. Martin in the Fields – Delius: The Walk to the Paradise Garden (Intermezzo from "A Village Romeo and Juliet")

When I hear music on the radio which my father liked I often think it's a sign.  The biggest sign I had recently of him was when I had an arrival of an old dresser I got off eBay complete with an old newspaper in the dresser drawers from 1971 from Bideford, Devon and there was an advert about Edgehill school which is where my father worked as a bursar in his final post.  He was already retired but they wanted a good bursar in place to troubleshoot for them but he ended up staying longer than planned.   Surely that was a sign?  It's like he's reminding me he's there looking out for me in some way.  It was very coincidental and this dresser had obviously been sitting in a dusty old house for years without being used although I've now painted over it in Farrow and Ball's Cornfield and somehow brought it up to date.  I love it when things like that happen and I'll keep the newspaper in the drawers as somehow it would be sacrilegious to remove them.

Joel loves music and is currently singing a hymn he learnt at Lourdes beginning with Alleluia Praise the Lord which he joyfully sings on his travels.  He also likes Aha 'Take on Me', Alesha Dixon and Pink according to another special needs girl who stays with Joel on overnight respite at High Trees and said to me I should get him these albums of the latter two as he enjoys this music.  When Joel's in bed at night and his music has stopped playing he shouts out 'MUSIC' pronounced 'MUJIC'!   So we have to go upstairs and turn the music back on.  We're trying to teach him to turn the music on himself but patience is a virtue....

Joel enjoyed his half term holiday and always does get so much from seeing all his Grandparents in Cornwall.  His Grandparents make sure he has music by his bed and Mozart is regularly played at bed time.  I wonder what he hears and if it's every pitch of the music as he has perfect pitch and his carer Sinead who is also a singer said they sang together and Joel sang a duet with her and gave her goose pimples as he anticipated her note and matched it perfectly.   Maybe we could find a choir for him or somehow bring this musical side to him out and give it a purpose.  I know he's gifted in this area.  Until we make him a genius for now every time Aha comes on I'll think of Joely and my father when Delius comes on and think how does music evoke so much?

Joel on May half term 2013 Cornwall holiday