The thing is it's a lifelong condition so when I hear parents say 'it gets easier as they get older', for us it is more like filling in a puzzle and finding a piece and when you think you're getting somewhere with the puzzle you suddenly find a piece goes missing. It's never linear, it's like a zig zag motion sometimes moving forwards then moving sideways and then backwards again. It's a constant puzzle. Not for the faint hearted. I have a poem called 'A Tribute to Mothers' for all mums with children who have a disability. I think I'll put it on today's post seeing as it's Mother's day. It was given to me by another mother with a child with autism in Sydney when Joel was first diagnosed with autism at the age of two. I came across it the other day and realised there was a reason why I kept hold of it. It's a bit sentimental and battered and was written by someone from the US I think (I really can't see an English person writing this). But anyway I don't care it's a great read for a mother of a child who has a disability as it makes you feel special and chosen for the job as if it takes a particular type of mum to look after this child. If you can read it do (sorry the type is so small).
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| Poem to all mothers of disabled children |
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| Joel Summer 2013 Cornwall |
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| Joel Summer 2013 Cornwall |
This has meant I have regularly put in Joel's school communication book something along the lines of :-
"Joel got to sleep at roughly 5am and so he will be tired and irritable".
To my amazement most of the responses are :-
"Joel has had a very good morning and did his tasks very well"...
Joel seems to have so much energy I am amazed he manages to stay focussed throughout the day. Never mind us who are slowly passing out somewhere.
I would love to tell you it's all been plain sailing but it hasn't and we've had a good setback with this and social care support, doctors, behavioural issues like Joel wetting the bed again too. We are still waiting for Joel to have a new nurse on board as he's on a new medication called clonidine which has helped a bit with the sleep. This means his blood pressure needs to be taken regularly as this medication is meant to lower it slightly.
We started this after visiting Joel's lovely gastroentirologist Ann Wright (pee doctor as she calls herself) up at The Evelina children's hospital, St Thomas's at the end of 2013. I told her Joel wasn't sleeping and she said to start on the clonidine which was what had been suggested a while ago for his OCD behaviours. (ie bowing on the floor like he's praying several times a day, running in and out of shower and bathroom, putting foot in bath and hopping out again thoughout the evening etc)
I hadn't wanted Joel to start clonidine for a while but quite frankly as nothing appeared to be working - and believe me I have tried them ; melatonin, Scotson exercises, oxygen therapy, tons of exercise like trampolining, swimming, walking..the list goes on. When nothing else worked I was willing for Joel to get started on this new medication clonidine.
After a crisis meeting with Joel's social worker re getting more support through the nights we have temporarily got support one night a week at home as well as Joel going to a very good respite house a few nights a week which started a year ago. Even though this sounds like a lot it's actually been a necessity and it means we can keep our darling boy at home.
To keep Joely comfortable I moved the spare double bed upstairs with Carly who was Joel's key worker on a Wednesday afternoon. (She's sadly no longer with us as she went on to manage a care home a month ago). She would take Joel to his trampolining lesson at the local leisure centre and sometimes after for a haircut. This is usually Joel's routine with Carly but to ask her to lift a bed up the stairs was beyond her job description and I was so grateful for her help. The double bed helped as it meant if we did have to crash next to Joel we at least would be in relative comfort. Joel adores having the comfortable bed and loves chilling out on this comfortable bed to the detriment of any guests I now have to put up on a sofa bed.
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| Joel at his trampoline class on a Wednesday afternoon with teacher Tracey (who incidentally is a stunt woman in her other job so sometimes can't make the class because of this other exciting job) |
The point is the clonidine really did help him to sleep and he's still on it although it's not a guarantee every night it's certainly helped him which has helped us! It may not last though as these drugs can wear off like the melatonin did and the other night he was up til 4am so this can happen and luckily this was when the night lady Rebecca was here.
More news on healing Joel and another new medication which we started last week for his OCD behaviours. Because believe it or not autism is treatable. Joel was recently diagnosed at the Infectious Diseases clinic at Great Ormond Street hospital with PANDAS - Pediatric Autoimmune Neuropsychiatric Disorders (PANDAS) & Pediatric Acute-Onset Neuropsychiatric Syndrome and has to take an ongoing course of antibiotics for two months called Azithromycin to tackle his OCD symptoms and behaviours as this infection he has it attacking his brain and if caught early can help treat these symptoms. To find out a bit more go to this link:-
http://youtu.be/afrhpZVT2-A
So far he's only had two (he has 1 capsule 3 times a week). Have seen no new changes yet to Joel although he was very happy today on Mother's Day and had a lovely time with him at the park and at Ashdown Forest at Pooh Bridge playing pooh sticks with the kids.
Easter time is soon and wish you a very happy Easter and Joel is looking forward to going to Cornwall again to see his Grandparents. It's his Granny Maggie's 70th Birthday party next Saturday so Happy Birthday Granny Maggie! I know a smile will be brought to his face and more to the point to hers.
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| Joel and Granny Maggie Summer 2013 Cornwall. Happy 70th Birthday Granny! |
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