Sunday, 15 November 2009

So, what have I been up to?

8 months is a long time, so perhaps you feel you'd like to know a bit more about what I've been up to. It's a long story, so I hope you've got a cup of tea and are sitting somewhere comfy!

The bottom line is that life has gone from mad chaos to, well, madder chaos! The only thing that could make our lives more hectic would be if we got a dog - luckily neither myself or my husband are dog lovers!

James managed to get through most of the last term of school uneventfully. All the winter bugs and viruses had worked their way through his system so he managed to get through a whole term without missing a day. This was a major acheivement - the first two terms, he was missing at least one day alternate weeks! I was called into school on numerous occasions which started to get embarrassing! If a qualified doctor can't decide whether he child is well enough for school, what does she do with patients?!

In May we had booked a week at The Thomas Centre - the descriptions and ethos made it sound like an ideal venue for a holiday for families like ours. It is impossible to explain how much organisation is required when going away with a child like James. He needs his routines and can't be allowed to roam freely around the house/grounds unlike other children his age. He gets bored and distracted easily so needs to have activities available to him but if he doesn't enjoy them we need to be able to leave quickly and diffuse the situation. So a holiday "village" set up specifically for families with autistic children sounds ideal doesn't it? We phoned ahead and made sure there would be stair gates (to keep him out of the kitchen) and with plenty of preparation felt we were leaving with all we'd need. But things didn't go according to plan. The first hurdle was that a week before we were due to go, I fell down the stairs at the train station and fractured my coccyx. Ouch. There is no treatment, other than rest and painkillers, so I was in agony and could barely bend for the week before we left. I wasn't relishing the idea of a five hour drive with a sore lower back, and my expectations weren't dashed! Not only was I in agony, but James found the journey very difficult and spent the majority of the time throwing things out of the car window (thankfully, not himself or his clothes!). We are now considering buying a new car with electric windows at the back!

The complex itself was lovely - there was a small childrens play area in front of the cottage, a large trampoline in the grounds, a heated swimming pool which you booked out for the family so had total privacy, a games shed with ten pin bowling and a pool table, and a play room with a piano and children's toys. Perhaps my biggest disappointment was the fact that whilst luxurious and comfortable the actual cottage wasn't geared up to a very active autistic child. We spent the first few hours "de-Jamesing" the place, putting things out of reach, moving lamps and breakables into other rooms and generally worrying about how much damage he'd do. I was surprised that this hadn't been considered when designing the place, to be honest.

The week had a lot of ups and downs. Actually, an awful lot of downs for me, but that was as much to do with my levels of pain as anything else. There were surprises - for instance James HATED his trip to the Aquarium in Hull and was indifferent to the animals at Rushmoor Park but loved the outdoor play there. He surprised us several times by sitting down (outside) and eating his lunch without moving. A huge achievement for him, and us. By far the most successful day was our trip to Pleasure Island. James has always been a thrill seeker (as a four month old baby, a good way of calming him down was to turn him upside down - I guess he had a lot of proprioceptive and sensory needs even then). He spent the whole day grinning and cuddling us and Bea loved it too. Whenever we go away we always make sure there is a similar facility around for us to access.

Luckily our journey home was a lot less stressful and my pain had subsided a bit by then. We haven't decided whether we would go back and perhaps will wait until James is a bit calmer to try again. What has become clear is that we are unlikely to take any more holidays for quite some time, as it was more exhausting and stressful than staying at home. One option would be to take a carer with us, and we will definitely be considering that for any future family breaks.

So that's part of my update, and I'll add more soon!

Tuesday, 3 November 2009

Long time, no post

I have just noticed that my last post was back in March! I can't believe it's been so long. Time just flies. We had a rather hectic summer and the first half term break has been and gone, and now we have the run up to my least favourite time of year. Christmas is full of pain for me - James' birthday is 3 weeks beforehand, and it feels like rubbing salt in the wound. All around me people are getting excited about present buying, the children are getting feverish with anticipation and the joys of the festive season abound. I am usually drowning in a sea of dark depression, facing the thought of four days stuck at home with very little to do and a child who has no idea what Christmas is about, let alone what to do with the (few) presents he gets. And I have no idea what to get him either. Can you imagine how hard that is, having a child for whom you cannot find a suitable gift? I suppose I could buy him some new clothes (he is back to chewing through t shirts at a rate of one a day...) but that doesn't really count does it? Or maybe some new shoes - we have such a hard time getting his shoes fitted that they now cost me over £50! He has no interest in the TV, so a DVD is out of the question, and he can't ride a bike or scooter so that's not an option either. It is one of the many things that makes me feel an inadequate parent.

But I'm not going to continue in this negative frame of mind. I stumbled across this little gem on someone elses blog and thought it might cheer me up to fill it in and share.

All about me:
Things you've already done: bold
Things you want to do: italicize
Things you haven't done and don't want to - leave in plain font

1. started your own blog
2. slept under the stars
3. played in a band

4. visited Hawaii
5. watched a meteor shower
6. given more to charity than you could afford
7. been to disneyland/world
8. climbed a mountain

9. held a praying mantis
10. sang a solo
11.bungee jumped
12. visited paris

13. watched a lightning storm at sea –
14. taught yourself an art from scratch
15. adopted a child
16. had food poisoning
17. walked to the top of the Statue of Liberty
18. grown your own vegetables-
19. seen the mona lisa in france
20. slept on an overnight train
21. had a pillow fight

22. hitch hiked
23. taken a sick day when you’re not ill
24. built a snow fort
25. held a lamb - and bottle fed it
26. gone skinny dipping

27. run a marathon
28. ridden a gondola in venice
29. seen a total eclipse –

30. watched a sunrise or sunset –
31. hit a home run
32. been on a cruise
33. seen niagara falls in person
34.visited the birthplace of my ancestors

35. seen an Amish community
36. taught yourself a new language
37. had enough money to be truly satisfied
38. seen the leaning tower of pisa in person –

39. gone rock climbing
40. seen Michael Angelo's David in real life
41. sung karaoke
42. seen old faithful geyser erupt
43. bought a stranger a meal in a restaurant
44. visited Africa
45. walked on a beach by moonlight –
46. been transported in an ambulance
47. had your portrait painted

48. gone deep sea fishing
49. seen the cistene chapel in person
50. been to the top of the Eiffel Tower in Paris
51. gone scuba diving or snorkelling
52. kissed in the rain
53. played in the mud

54. gone to a drive-in theatre
55. been in a movie
56. visited the great wall of china

57. started a business
58. taken a martial arts class
59. visited Russia
60. served at a soup kitchen
61. sold girl guide cookies
62. gone whale watching
63. gotten flowers for no reason

64. donated blood
65. gone sky-diving
66. visited a nazi concentration camp
67. bounced a cheque
68. flown in a helicopter
69. saved a favorite childhood toy –
70. visited the Lincoln Memorial
71. eaten caviar
72. pieced a quilt
73. stood in times square

74. toured the everglades
75. been fired from a job
76. seen the changing of the guard in london
77. broken a bone

78. been on a speeding motorcycle
79. seen the grand canyon in person
80. published a book
81. visited the vatican
82. bought a brand new car –

83. walked in Jerusalem
84. had your picture in the newspaper
85. read the entire bible
86.visited the White House
87. killed and prepared an animal for eating
88. had chickenpox
89. saved someone’s life

90. sat on a jury
91. met someone famous
92. joined a bookclub
93. lost a loved one
94. had a baby

95. seen the Alamo in person
96. swum in the great salt lake.
97. been involved in a law suit
98. owned a cell phone
99. been stung by a bee

What does your list look like?