Wanted : someone to restore my faith in human nature

It has been a long week or so. I would love to write a positive post – in fact i will add 10 things I love about my life at the end , just to redress the balance a little , for my own sanity if nothing else.

J is in his 2nd week of part time school and it is really helping. We had a lovely weekend , the best in a while and I’d forgotten what those were like. But he is still having meltdowns after school or being very withdrawn. the biggie on Tuesday was due, I think, to the fact that despite telling school about my son’s sensory issues, despite even writing it down – they still thought him having his feet in the sand to make pictures was a good idea. Cue major meltdown, screaming his feet hurt- remove shoes and socks to find sand between his toes. No he won’t tell you he doesn’t like it- he will grin and bare it and unleash it at home. I hate to think how uncomfortable that was for my poor boy… even lukewarm water can hurt him:( add to this, all the positives that were meant o be in place after the crisis meeting… surprise, surprise… nothing has materialised. i am even supplying books for my son to read as seemingly, no-one is capable of reading what i write or listening  to what i say  or even doing as agreed and actually getting my son books that may advance his reading or ones that contain more than 2  or 3 letter words. Still getting level 1 books sent home, still telling them this is not helping him. Still he is going through phonics- what happened to the – ”oh  we can take J to the bigger library for that time for 1:1 time and he can choose his books”- providing him with a break from the classroom,quenching  his thirst for knowledge and some relaxation time. No bean bag has appeared either. his teacher has done a very pretty visual timetable and that is about it- J is not adhering to this as he has made his own coping mechanisms thanks, including stimming in the water constantly AGAIN, chewing his fingers and reading his favourite book about ‘ Lima and the Red Hot Chilli Pepper’ which he HAS to read every morning and he reads this to himself. Teacher oblivious to this routine and to his reading level. I am trying very hard to stay calm with everyone for J’s sake , but I am really losing my patience with the entire school. So why is it that people do not do what they say will do? Providing a beanbag from another part of the school is less than a 5 minute job, offering a different level book- is it really that taxing?  I have no faith in their ability to meet J’s needs. I think they think I have solved ‘ the problem’ by taking him out of school 2 days a week and they need make no effort , other than nod and say appropriate comments when the ed psych is around.

My mum is finally out of hospital. She is no different to how she was 6 months ago and she is still  ‘ awaiting assessment’ for a pacemaker. Myself and hubby have major concerns about her mental health too ( she has admitted only 2 days ago that when in hospital she couldn’t remember where she lived) and no amount of talking to nursing staff about my concerns seems to get me anywhere. So. another case of ‘ out of sight, out of mind’.

I am still having concerns about M. Today less so, but yesterday she was plain odd when attending a new stay and play session. No eye contact with anyone , no playing with anyone, weird facial stim thing she does with the corner of her mouth,…. just very odd and  I know siblings can imitate their other siblings’ autistic tendencies, but j doesn’t do most of the things she does. Came out and she was a different child- chatting to me, saying she liked watching the paint and that she had fun !!! This morning the 1st 5 – 10 minutes of her conversation were all about flies- how there were none in her room, could they get in , they were outside, were they in the kitchen etc etc. maybe she had a dream about them but surely this is just too much. I think it is time to think about that referral- but no doubt that is another fight just waiting to happen.

I have finally gone back to the GP about my joints and the pain. I am struggling with the pain in my wrist, fingers, knees, shoulders, toes, ankles … I am stiff in a morning and could cry with the nagging pain buy evening and it has woken m,e up and I have a high pain threshold. Last blood test flagged up consistent with Rheumatoid Arthritis ( severe in both sides of my family)….. have to have another for more tests and then probably referred to rheumatology. I am 36 years old. I am struggling to open jam jars and to strap my children in their car seats. Is there anything else life wants to throw at me? Sorry for the self pity- you can see why I haven’t posted for a while, my head has not been in a good place.

Last negative point and I swear those 10 positives will be written:) I thought I had a thick skin, I really did and I really am trying to work out why so called ‘friends’ can’t deal with any kind of special needs- is it fear? do they think their children will catch Autism? embarrassment? M and I have been attending a story time session at the library for as long as I can remember now and with J being off school he has come with us and struggled on occasion but coped and I have been so proud of him and pleased to find something he can enjoy. Today was different. he’s had a bad night- up in the early hours having had a nightmare about spider’s webs- screaming, sweating , shaking.. the works, my poor boy, so he was tired anyway. In the library today, 2 of the mum’s who I would say were friends ( not close but more than acquiantances) were saying J not at school again? must be nice and genuinely just joking. neither of them knew so I decided to open up and discreetly explain J’s difficulties. One said ‘ Oh and then made excuses to go take her daughter to look at dvd’s on the other side of the library- not speaking again, no goodbye,s nothing. The other said ‘ he is still gorgeous though’ and chatted until J had 2 meltdowns and that was too much reality and she left with no goodbye’s either. I cried, quietly and behind sunglasses all the way home – tears of anger, hurt, embarrassment but more than anything pure love and determination for my wonderful son…. we don’t need friends like that. All of a sudden my son is seen as a demon. So , more feelings of isolation and despondency. All I wanted was little patience and understanding… but that is too much to ask it seems.

So 10 things I love about my life:-

1) J and M obviously and my hubby.. so only 9 left !

2) I love the glee on J’s face on spying a new marble… ‘ look at the colours mummy’ or a new tree to hug  ( I didn’t know hippy tendencies were genetic?!)

3) M’s rendition of’ twinkle little star- never ceases to raise a smile… part Hilda Ogden, part Aled Jones and the mannerisms of Shirley Bassey-pure joy

4) The fact that my hubby thinks after being up since 3 in the morning , having had a tough day I am still capable of intellectual discussion. either he a) loves me so much he truly believes I am capable of it b) he is blind to my exhaustion or c) genuinely thinks I understand political theory….

5) My animals…. source of unconditional love, amusement , warmth and distraction… I can’t wallow in self pity with 8 hungry, mewing cats around me… and that’s just one part of the menagerie!

6) wool- I hoard it, touch it , make things with it than no-one will wear, sculpt with it, crochet with it, knit it….. it is my only guilty pleasure these days

7) The park opposite- it is beautiful and full of trees and we can always find a quiet part even in the height of summer where we can identify bugs, hug trees and watch butterflies… I always feel much more ‘ on top of things’ after spending time in nature

8) James Patterson…. oh the escapism! I refuse to read any Autism type books in bed or I have been known to be awake most of the night ‘ mulling things over’…. so a bit of J P is fast paced and really takes my mind off things.

9) Chillis! I love them… green, red, jalapenos – the spicier the better. Hubby recently bought me 2 large jars and they beat flowers or chocolates any time.

10)I am smoke free… I love the fact i don’t smell of stale smoke, that my fitness levels have improved and next month I will have been a non-smoker for 5 years. ( I gave up when I found out I was pregnant with J, along with caffeine too…. I wasn’t nice to be around for a while!)

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N.B. the title of this blog comes from my son’s very literal understanding of ‘ magic carpet ride’ ….. he believes this to be a ‘car pit’ ( as in ‘ sand pit’) and demonstrates this with a plastic lid and toy car. The magic comes in when the toy car is covered with the lid and it disappears!

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