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| Joely and Max on the trampoline and Granny and Grandpa's house Cornwall 2014 |
Living with a child with autism has meant that I haven't had much time to write about what it's like living with it. I seem to have spent an awful lot of time clearing up paint this Summer. Joel has high sensory needs which means he craves liquids and getting his hand on it. He managed to find proper paint in the shed twice managing to pour it over him and the floor leaving a trail of foot marks behind him. This then involved Jake using a hose down to his boxer shorts and me stage managing from the sides using white spirits at short notice to clear up the trail. He's also found kids paint which I'd hidden on top shelves in the kitchen just last night and so we had to give him a shower to get the blue and red paint he managed to put on his hair. That just about sums it up. Clearing up similar liquid items like shampoos and trying not to get cross. Because this is really not Joel's fault. He can't help it and we can't remember to do everything like lock up the shed or lock the kitchen door when we're trying to chill out and Joel's raiding the kitchen for paint and cereal because that's life and we're not superhuman.
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| Messing about with Joely at Baby Bay, North Cornwall |
I also spend a lot of time at my desk sorting out Joel's appointments which range from gastroentirologist, urologist, to paediatrician to tropical diseases clinic appointments at Great Ormond Street hospital to treat Joel's PANDAS. Joel is still on antibiotics to treat this infection which basically attacks the brain and I think this has helped him but I haven't seen any great gains apart from recently he's been sleeping a bit better.
In Cornwall this Summer I noticed a few remarks from relatives saying he's improved in his talking a bit. I had a wonderful au pair from Madeira - Joana who is a trainee speech therapist at Uni and wanted to work with kids with special needs. She was a Saint and even helped settle Joel to sleep! He wanted to curl up with her as he likes the company and she never complained when he crashed out with her. I was incredibly blessed to have her and she always saw the funny side of things which is what you definitely need if you want to get through a Summer with Joely! Lots of time was spent in the sea and on the beach and having lots of tickles because Joel requests tickles probably about 20 times a day. I said to him the other day he really can't go through life requesting tickles. But maybe he can and to hell with it if that's what makes him happy what do I care? I just want him to be happy because he has spent a lot of his life in pain and in anguish so we have to get the basics right.
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| Joana and Max Baby Bay, North Cornwall |
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| Walking with Joel and Max North Cornwall Summer 2014 |
I wish I could tell what's bothering him on the bad days though when he's bowled over in pain or bashing his head and crying out in anguish. As a mother of a child with autism this is probably one of the most painful experiences. I always think I'll be able to deal with this better but I don't know if I can ever deal with this better. I just tell him it'll be all right and that's all I can do. There are so many things you think you can do to help a child with autism and at the end of the day he gets lots of love and I hope that somehow this makes a difference. I went to see his new teacher at his school Step by Step outside East Grinstead as he's just moved up to the senior school this September and his teacher Anna said 'we all love Joel'. He has a lasting effect on lots of people who look after him including the lovely volunteers at Woodlarks Camp which he went on again for the second year running.
He is also moving respite houses to a bigger house with a huge garden about 20 minutes away from us in the country and I had to meet the staff there last week. I walked in to a room of about 20 people and luckily had brought my sister Dominie along as it was a bit daunting. Dominie's comments after were 'did you see all the cakes!'. Anyway Kim is running this house and has done for 17 years and she is a wonderful lady and introduced me to Mark who is Joel's new keyworker and he was very kind and funny which was refreshing. Joel is going to be having tea there this week after school and will gradually build up to staying there for half the week and half the week here. I am happy it's near his school and hope he likes it there as it will mean we get more balance at home with the other siblings. Max has been quite demanding this year and has just started school. He needs speech therapy and extra help at school and so he's been a worry to us too. He is a very different boy to Joel though and he always tells me when Joel's been doing something he shouldn't!
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Joel giving Granny a kiss Summer 2014
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Holly continues to be an amazing sister to her siblings. I took her to see her God Mother in Appledore while Joel was on his camp. So far living with autism hasn't done her too much damage. I think too much time is spent worrying about the effects of the other kids that autism has on them. But for Holly her good natured and fun personality continues to grow.
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| Max, Holly and Joel the tight rope in Cornwall with Jake |
I have been freelance producing when I'm not sorting out Joel's life ! This has been good for my sanity levels and actually being at home managing the kids is much harder than any producer job or any other job I've ever had. I have even started a drama course part time on a Friday and am loving it. I have spent 11 years with my life on hold. It's time to get on with it.
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| Hazel helping out with Joel and holding Max at Holly's 5th birthday party four years ago |
Life's too short and I was swiftly reminded of this when I was told last week that Hazel - Joel's carer from about three years ago had died of cancer. I knew she'd been unwell but she never wanted to talk about it and always wanted to hear about the children. She was a beautiful caring and funny lady who always had a sense of humour. When I was tearing my hair out about something Joel had done she would make me see the funny side of things always and for that I thank her. She took Joel to cubs for over a year and would come back laughing when he was covered in mud saying that all the other kids wanted to roll in it secretly too and that she would tell them so when they were staring at Joel. She also took him to his holy communion classes and had a giggle when Joel started singing happy birthday when he saw the candles lit for prayers. She will go to heaven. She was someone I'd like to thank for everything she's done for our family. Holly has a present from her in her room which is a glass wind chime with the word 'LOVE'. And Hazel did just that - she loved and never judged. Hazel is one of the angels I have met along the way on this endless autism trail and for that I am a little bit richer.
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| Hazel sitting next to Joel at Holly's 5th birthday party |
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| Hazel with Joel after his first Holy communion three years ago. |
