Have I Been Handling this all Wrong?

Yesterday I phoned up a local Surestart Centre about their timetable, looking for different activities for all of us to do ( when J not at school) and M having some time with mum when J at school.  We haven’t used this one before, it is a little further afield but I thought we may brave something new and it would be nice for M to have something ‘special’ for her to attend.

I spoke to a lovely lady on the phone and explained that I had 2 children and  my oldest was on part -time school hours and was looking for something for us to do and that my son was thought to have Asperger’s so on occasion he may become upset. I don’t really know why I  told her this, maybe because  at least they know in ‘advance’… last week at the library was just awful after J totally lost it twice and whilst I do not want everyone to know about J’s AS (as it is none of their business), I think maybe I have to accept I need to be more open and I may get more understanding, I may not, but if my son had a more obvious challenge in life… say difficulty with mobility and needing a mobility aid, no-one would wonder why he wasn’t running around with the other kids as it would be obvious ( this is not meant to offend anyone, it is merely the way my brain is thinking things through)My son struggles socially and with anxiety and little things upset him deeply and can lead to a major meltdown and everyone thinks he is just a spoiled brat or naughty – in many ways that upsets me more than telling people about J’s AS. I am left feeling like I want to shout ‘ have you any idea how difficult my son finds social situations? My son has fought so hard and you can just take your tuts and stares and opinions elsewhere.’

So that got me thinking have I been handling this all wrong? I have taken the stance that people will be told about J’s AS on a ‘ need to know basis’ and I have done that for his sake as , like I have said it is none of their business. But I am I doing him a disservice? I thought about being in his shoes ( and I know he is largely unaware of stranger’s reactions to his little ways but whilst that is great, I think awareness will come with age and it is going to hurt him deeply.) and whether I would prefer for someone to think of me as an unpleasant person, selfish, violent etc or would I rather someone know that sometimes I have such outbursts that I cannot help due to a ‘ hidden disability?’ And I have to say I chose the latter. J cannot make that choice just now and as he grows up I will ask him to inform ( or me inform) when HE chooses.

I am always harping on about how I wish people were more understanding and accepting, not just of J but of disabilities in general. In my working life, I have always tired to help people with learning disabilities become a real part of a community, valued for being an amazing unique person with alot to offer the world. And I think I have really messed this this up with J. I have thought I wanted people to get to know J first and then tell them about his AS at a later point so they could get to know him. but his meltdowns are happening so frequently outside now, many are just seeing a very angry little boy anyway…. not seeing his positives. Also, I want teachers, other parents and everyone I come into contact with really  to gain an understanding of autism and  Asperger’s, as this can only help all those children on the spectrum growing up. But somehow my vision has become skewed…. I think I am protecting J and it actual fact I don’t think I am. Further more, it is almost like his Asperger’s has turned into a ‘dirty little secret’ which is just so wrong on so many levels and never going to help J.

So I think I am going to change my approach for J’s sake. I am not going to get a sign up made up for the front door, or ensure he is wearing a humorous Autism awareness slogan t shirt. But I am going to be the positive mum, who tells people from the start and let them see how proud I am of him ( I hope people do anyway)…. I don’t want it to seem like an attempt at pity…. I don’t want pity- I have an amazing little boy why would I want pity? I want understanding for J and want to inspire other parents of children with autism, to  b***er the stares, hold your head up high and to celebrate your unique child . Not easy in the middle of a meltdown, but I am determined to take this approach. How can people ever understand if I don’t even attempt to explain AS?

On a wonderful forum where I have received so much support and advice, another mum posted a few pictures relevant to autism. One really tickled me and I know it may not be everyone’s cup of tea but it makes me giggle – especially with J’s tendency when excited! So I would like to share :-

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!)

4 Days in school….. then at home with mum

The day after my last post  was such a turning point. j woke up in an almost depressed state, that is the only way to describe it. He was lethargic, his eye contact was gone, he was hardly talking and when he did he was stumbling over his words  as he did 2 years a It was hard to believe I was looking at my own 4 year old son. We have him lots of cuddles and tried to talk to him but he was not very responsive. Then I went to hang some washing out and came back to find my boy projectile vomiting all over the floor with his dad trying to reassure him. It had come from nowhere- he had no other signs of illness, we had all eaten the same food and he didn’t even have a cold where the mucus ( too much info, I apologise) can make a child sick. Then I thought of how I had been as a child…. when I was in a highly stressed state ( exams, stage performance etc) I used to vomit. It was even a family joke that I didn’t perform as well if i hadn’t been sick!  So, considering his anger  and aggressions the day before, the low mood I am convinced this was a physical manifestation of my son’s stress at school.

In the 4 days he has been there he has :- not been sleeping well, had 2 nightmares, become unresponsive, aggressive, chewing everything ( a major sign of my son’s stress)…. even coming out of school his fingers have been in his mouth ( this is despite telling school this is a major sign of his stress)… he has come out of school 2 out of the 4 days with no jumper on because…. just as i predicted… he is spending alot of time splashing in the water… another way of him trying to calm himself. On top of that i think my son is utterly bored with the ‘ work’ presented to him. his teacher said ” he did really well with his numbers today”- a little more digging and found she was impressed because he counted to 10. 10 ? 10??? my son counts to over  1000 for fun. He is still being given level 1+ reading books he had back in February. But  when he comes home, he goes to the library or reads his own books that are aimed at aged 5,6 and 7 + children. So he hasn’t even got the challenge of learning to distract him from his stress.

So that was it, I made the decision he wasn’t going in on Monday morning. I didn’t tell them the whole story, just said he had been sick and left it at that. ( believe me , I wanted to say more but I didn’t want them closing rank and start hastily writing reports for support that should have been there or suddenly tweaking their SEN policy…. believe me I have a similar thing happen before) I then got in touch with J’s educational psychologist. Thanks goodness , she is on our wavelength and totally understands why j does not present challenging behaviour at school but understands it is obviously stressing him out. . She immediately rang school and got straight back to me. An emergency meeting has been out in place. School are not happy as it is only 3 days notice. So, we will go in on Thursday and see what happens. But at the moment, they could offer me the world for J and put a cherry on the top and to be honest i wouldn’t be impressed. I needed them to do it months ago, I needed them to listen to me months ago and they just weren’t there. And I am meant to be impressed that they may be willing to do so when their school’s reputation may be at stake? My son is worth more than that.  I am honestly thinking it may be better to start in a new school , where he goes in with a diagnosis, where I and the ed psych speak to the SENCO and his teacher long before he starts and everything is in place before my boy even sets foot through the door. Yes, it will be difficult for j to change schools. But no more difficult than being at a school with no support, no friends and no teachers willing to even look up what ‘ Asperger’s  actually is how it may affect my son.

Anyway, at the moment J is not legally required to be in school. So until I have proof there is support in place that will help reduce my son’s stress thoughout the school day, so he isn’t making himself physically ill with attending…. he will be staying at home, where he is safe, supported and loved and will probably learn more too:)

Drowning not waving

This will probably be a rant and it will probably be disjointed so apologies but I am not aiming for literary acclaim, just a means of ‘letting it all out’ and this is the only ( socially ) acceptable means I have.

J has been back at school for 4 days. The school action plus is not in place. The SENCO has been away, there has been no contact from ed .psych and I have another teacher who gives me one of ‘ those’ looks and who thinks I am a neurotic parent who is trying to make more of a rather shy son.The sleepless nights have started . The nightmares have started. And, oh boy have meltdowns come on with force. Starting from when he got up and is still grumbling now ( although calming down with his music in his room…..) I am losing my son and not only does no-one care I feel like no-one who is actually meant to help us even believes us. I have been blessed with a wonderful son with autism. But if only he wasn’t so bright and high functioning at school we may get some help. I am tired of being told he is fine. I am also tired of ( albeit well meaning) parents of other children with autism that I should look on the bright side as at least my son can talk. Yes he can talk and yes he masks his autism at school but he is SEVERELY autistic and aggressive and challenging at home. So yes he can talk, but most of that is to shout or to repeat phrases to calm himself or to occasionally express his fears ( I don’t like the dark places- shadows. Most of the time we are left to guess as he is not able to tell us.)

I feel like my family is falling apart before my eyes and I have no means of stopping it, just merely standing back and weeping as the small pieces turn into larger chunks. These last few days with M I have realised just how demanding J is. I have also realised how my daughter is being overshadowed by her elder brothers behaviours. The change in her is startling- just 4 days of being with mum. Then I feel guilty for feeling that way as I miss j terribly and the worry I have for him is overwhelming.

J and I went to an autism support group this morning where he can play and I can chat to others. Everyone is lovely but they all have people they have known a long time and I not the world’s greatest social butterfly and when you feel low your confidence to strike up conversation is sadly lacking. But people have said it took years to get any kind of support. J also had 2 meltdowns whilst there and it is hard to have a conversation whilst being shouted at and hit by your child.

So where to turn? We have no support at all. No-one to even ‘ watch the kids for an hour’ to take some respite. ( My own mother is ill and needs my support more than I need hers) We are all mentally and physically exhausted and I am losing hope and I can feel a grey cloud of despair growing ever larger and I am struggling so much daily. Even getting to school sometimes is such a battle and I have a patronising teacher look down at me and say ‘ I’m sure he’ll be fine’ as I explain to a glazed expression a small part of how tough our before school routine and journey has been. There is no autism outreach contacting me, we have no educational support, no financial support, no emotional support and no signs of this changing in the near future. We are existing, that’s all I can say and not only does no-one care no-one even seems ready to believe me to any degree.

I have thought about taking J out of school and home teaching as the stress of school is clearly too much for him. And if I just had J I would be so tempted to do that. Although I do worry as he is very intelligent and knows alot about many things- more than I could ever hope to know in a lifetime! And then of course- the social side of education wouldn’t be there and he needs help with this desperately to help him through life. I have little M too and J’s behaviours impact so much on her and I have to think of her too and she is just finally starting to get some well deserved long term 1:1 attention from mum.

If only the roulette wheel of the autistic spectrum has handed out my boy the type where he let it show a bit more at school, more help would be in place. Do I wish my son was ‘ more autistic?’ What a dreadful, unappreciative mother I am. I wish my son had the confidence, ability, whatever it is that is lacking to show people how he struggles at school. But then my son has a social, communication disorder … so he wouldn’t do that…. Please excuse me whilst i find a brick wall to repeatedly bang my forehead against….

In my more bitter moments, I do wonder if there is any other condition, illness or disorder out there that really brings forth such an utter lack of support as Asperger’s or high functioning autism and certainly one that makes the parents feel as terrible as many aspie parents. You question your own sanity, you question whether you are seeing things that aren’t there, you spend each day hoping for some support or a little brown envelope coming through your door for a formal assessment date. I cannot think of anything else where children and their parents are expected to wait for a formal diagnosis as long as this and to ‘ just get on with it’. Let me think…..regardless of the battle to help with J’s speech ( another story!) I have had concerns since he was 2 and half… earlier but this was when the concerns wouldn’t go away or be dismissed from my mind. Had to self refer to GP. Appointment for paed took approx 4 months to come through, 1st appointment saw ‘no cause for concern’ but to come back in another 6 months. Then referred for a 12- 18 month waiting list. Where this can take up to a year for assessment I am told. So from our initial concerns at age 2, J could be what 6 years old before he gets any real help or at least a formal diagnosis? How is this right, how is this fair and how is this acceptable for all those families living through this; as I know I am not alone. Some people have told me that I should be grateful as he doesn’t have a life threatening condition. Well, I am, very. But he has a quality of life limiting condition and the fact my boy and his family are being destroyed from the outside in seems to not be a priority medically or educationally.

First day of ‘ Big School’ tomorrow… where did my baby go ?

First day of school nerves and that is just mum! I am a nervous wreck and it is not helped by the fact that my son has nothing formal in place at school- awaiting ed psych visit and have no idea when that will be .However, i will give until the end of the week and if I haven’t heard from her, I will be making contact myself. I feel physically sick to my stomach. I am laying awake at night worrying and have done on and off for weeks.

J is looking forward to it- well, he says’ ”I am excited about going to reception” which is just lovely to hear ( thank goodness he got into the same school he was at nursery at or I really would be feeling panicky!)That said, the meltdowns are more frequent, his patience less, his anxiety more, lots of chewing and stimming….. so I can guess that he is feeling nervous too but doesn’t know how to tell me. That and the fact he had a meltdown only a few minutes after laying his eyes on his school uniform last week….. it went on for over and hour and although he kept saying’ I don’t know’ when asked what was upsetting him, it doesn’t take a rocket scientist to figure out it was linked to school. fast forward a couple of hours and , after much prompting and patience, he said he had no friends and it made him sad:( My poor, poor boy- how  can I help him with this? I have obtained a social story about making friends and it deals with what friends are and how to ask people to play so I am hoping this will help, even a little. M- what a superstar- later said, ” you are my best friend to him” which made me well up:)

Yesterday was my working day but I took time out to make a ‘ pen picture’ of J to take to his teacher and SENCO. I don’t know whether it will help but at least I feel I am doing SOMETHING and I am hoping they will read it. That said , despite  trying to brief, it has turned into 14 pages , but never mind!

I keep getting very concerned about M’s behaviour. I know it is natural to worry when one child has a diagnosis ( no matter if a formal one or not) but some things are really worrying me. She keeps randomly reading words…. she can’t read yet and cannot even recognise all her letters but she will pick up a book she has never seen before and read the title ( the picture on the front has not been  a clue  either – mainly abstract picture or unrelated to title) and the other week I asked J what a street sign said and M said it straight away- we have never read it before or mentioned that street so that was more than coincidence. She has developed an EXTREME fear of flies where she becomes totally hysterical and sometimes these flies are invisible to me:( She doesn’t like playing on playground equipment if another child is already on or if one gets on with her….. but chats to adults easily. She has an amazing long term memory- just like her big brother. She is doing a really weird thing with her mouth at the moment…mainly when anxious or upset- she pulls one side of her bottom lip down and out at a funny angle – it looks really odd:( I know I shouldn’t analyse her and just enjoy her but then I think, yes, but what if i miss something here and girls with AS can present so differently. I am sure she is fine and she has great imaginative play and on the whole very sociable… but those nagging doubts keep coming back….

Well, I am going to check J’s bag for the 100th time and check my phone is fully charged for tomorrow  and then think about getting my little ones for some last day of holiday fun outside whilst the weather is fine. Fingers and everything else crossed for tomorrow…. watch this space.

Exhausted but happy

We returned last night from the Limetree Festival . What a weekend! We all had fun ( ok, mum wasn’t too happy when it was about 4 degrees outside and was freezing sleeping in the tent but j was warm and toasty!) and M liked having her face painted, we all danced, squelched in the mud ( it was torrential rain pretty much all day saturday), cooked over a camping stove, went for nature walks … it was just fabulous.

J had a couple of meltdowns but mainly I have never seen him so happy. hardly any sensory calming behaviour, little anxiety at all and think it is one of the best things we have ever done.  The smile on his face below says it all:-Will definitely be booking next year. But right now I need a cup of tea ( without grass in it) and a nice soak in the bath.

How much ‘control?’ Is sometimes it necessary to be ‘ cruel to be kind?’

This thought has been going round my head for a few weeks now and it just won’t go away. Instigated by the reading of various posts online and chatting to other parents of children on the spectrum. I know when we had ‘ that half term’ and our lives were turned upside down by J’s behaviour and we finally started some research of our own and look at his behaviour as objectively as possible and realised that it was highly likely J was on the ASD spectrum somewhere; may people told me to ‘give him control and his behaviour would improve.’ But exactly how much control ? When is that too much? When is it not enough? I think sometimes people think I may be a bit harsh with J – let me explain:-

Over a year ago (without knowing what we know now… although I am going to write this and even I am going to think how an earth did we miss it?)) J would only eat and drink from a blue plate . Any deviation from this and the meltdowns ( I now realise that this is what it was ) occurred…. screaming, kicking, etc etc lasting from anything for 5 minutes to over an hour. This went on for a few weeks and something went ‘ ping’ in my head. I had to help j tackle this- what if we happened to go somewhere with no blue plate or a blue plate but a green cup? He couldn’t , realistically, spend the rest of his life only eating from this blue plate and cup or his life could be seriously restricted. So I took a deep breath one day and I carefully and calmly explained that we didn’t have the blue plate anymore and offered him a choice ( giving some control, i feel) that he could have a blue cup and either a green plate or a red plate- which would he like? As expected , the meltdown came. But, once calm and with much support, my boy ate from a red plate! And he was told ‘ what a clever boy and praised like mad. That moved on to replacing the blue cup aswell and I now have a boy who can eat from any colour plate or cup and it isn’t a source of stress going out and I don’t have to go into something akin to a panic attack if I have forgotten to pack our own blue plate and cup in my bag.

My point is this- did I do the right thing? Would some view this as cruel? Or even that I am too controlling? Should I have let him just eat from his blue plate and cup forever- or until he was ever to give them up- whatever came first?

I shall be honest, I try to strike a balance with my son. I understand that when he is having a really tough day that he needs an extra 20 minutes on his own on the computer or counting to 100 or looking for a BBC logo on something…..and I know he needs me to understand that too, I am sure. BUT and this seems to be a big but, I do not let him play indefinitely on his own doing his own thing and I know some parents do this. I am not here to judge, as don’t get me wrong i would love to have a quiet life (!) But I feel ,as J’s mum, I need him to understand that life is not about having your own way all the time or that it is ok to place unrealistic demands on all around because if I don’t help him with this I think a) I am just insulting his intelligence and capabilities ( a weird kind of ‘does he take sugar’ scenario)… ‘ aww bless him, he can’t help it, he’s got Aspergers and giving a token pat on the head.

And b) I am seriously impeding his chance to be all he can be. I do not want to change my little man but I do want to help him to learn how to cope and function in this world as this world is not going to bend to accommodate him. At some point I am sure he would have had to face the ‘ I am really sorry we don’t have a blue plate ‘ from someone other than mum… who would be less likely to be supportive, more likely to end up with J in trouble and if an audience ( e.g. School or a cafe) , well it wouldn’t do much for his ‘ street cred.’:)

I know alot of parents and I know alot of special needs workers too ( I could tell you a tale about an autism outreach worker I met up with years ago but will save it for another time!) who will be more likely to give in to unrealistic demands more frequently than myself and I have to say it concerns me. Even if this is done with good intent ( i don’t want to upset him/ her , life is hard enough. ) Although and I don’t want to offend , but it is also sometimes done out of fear ( fear of a reaction and fear of how to cope with a possibly violent reaction) and maybe even for that ‘quiet life’ …. option a) explain that another 10 minutes on the computer is enough for 1 day and then it is time to do something else( go to the park together, bake a cake, build a robot , bounce on a trampoline.. whatever) or b) Hmmm , if I leave him or her for another hour or so I get more time to myself to catch up with a friend, do the ironing in peace and quiet etc / Don’t have to deal with bad behaviour that is hard to handle and makes me feel terrible .

The reason this approach concerns me is this … experience. I worked on a challenging behaviour unit a few years ago ) not that many where I could be convinced services have changed drastically since I worked in this arena) and many of the people on this unit were on the spectrum…. some had Aspergers, some were more severely affected by autism and were non verbal also. They had little freedom or choice, no independent life, no job, few friends ( apart from some of the support workers.) My background was in psychology and behavioural therapy and when I started working there I was absolutely appalled so many times over. 2 of the residents there had not been outside their own front door for over 7 years! 7 years? Can you imagine your behaviour if you had stared at the same 4 walls for that length of time… I know I’d be bloody challenging! The reason they had not gone out was that one of the young men ( 20’s) ‘ refused’ to wear anything other than blue shorts and an orange t shirt- winter and summer alike and he was terrified of mini buses. The 2nd man ( early 30’s) was highly challenging, scratched , bit mainly because , I believed, he had nothing else to do- so may aswell get a rise out of the staff team than be utterly bored! I am not explaining this so everyone will think how wonderful I am , merely to put a point across. The first young man I started to challenge about his clothing… slowly, very slowly and always offering an alternative where possible. It took a full 6 weeks of support, patience and understanding and even bravery from the staff team( I still have a scar across my chest from where he had a complete meltdown the 1st time I explained there were no shorts) but the same young man walked into town and bought his own clothes ( not just t shirts and shorts either!) found a passion for films and ended up starting a college course on something to do with technology. ( As for the minibus.. a little dig into his history and I discovered he had not been properly fastened in whilst being escorted to special school aged about 7 years and had ended up falling out of the back of the moving mini bus… no wonder he was terrified. Again , slow steady support and on one of my last shifts he went for a ride in the mini bus for a meal out in new smart trousers and shirt and tie!)

The 2nd man… severely challenging… 1stly accept his intelligence ( he was a very bright man) and when he spits on the floor ask him and follow through with support for him to clean it up- rather than dashing of for disinfectant and cloth for yourself. Try to give no attention to his behaviour- when he hit- walked away, no eye contact, nothing. It took 1 week for the spitting to stop. After spending quality time with him, I discovererd he had a fascination for water… it was a way in. To cut a long story short, a behaviour program was put into place that reduced his challenging behaviour and meant after 7 years this guy went out into the world, spent the afternoon having lunch near a lake and many more enjoyable outings followed. Some people disagreed with this and thought I should have just tolerated the behaviour and it was ‘ unfair’ for me to challenge these men ( mainly disgruntled staff who wanted an easy life!) But suddenly, these 2 men had some real quality of life.

Whether people agree with me challenging my son every now and again or not- I think back and my motivation is simple…. that will not be MY boy, not able to go out as no-one has supported him to face his routines and demands in a sensitive and appropriate manner, it will not be my boy that will only eat from a blue plate and drink from a blue cup and not be able to leave an institution essentially. I will fight every step of the way for my boy and if I have to suffer a few kicks and bites and screams along the way, so be it. I am his mum and it my job to help him achieve all he wants to achieve. ( and if gets a job where he can spend 8 hours a day on a computer, good for him! But I will equip him with skills and coping strategies that mean that this is not his ONLY option:)

Another challenging day but this makes it worth it…..

The last few days have been so tiring and challenging with J and I don’t know what was so different from this week compared to last week… apart from daddy being on holiday this week , but he has known about this for weeks:(

He has argued, shouted , screamed, hit, kicked and thrown things across the room because he can’t fasten his shoes, he has pressed on too hard on a Thomas picture and the pen went through, because the sun is too bright, the window not open enough, because a sticker fell off his t shirt, because we need to stop on a picnic to eat ( he wanted to just walk and run and run some more!) because his juice bottle top wouldn’t open, because his sister wanted to be ‘shopkeeper’ when playing shops, ….. on and on and we are all drained:(

But the photo above makes it all worth it:) We went to Clumber park today and it just beautiful there. We spent time amongst the trees and M enjoyed finding ‘ coconuts’ (aka known as ‘ Pine cones!’) and making camp fires ( unlit of course!) out of sticks and she loved picking up the dry leaves and throwing them like rain! ( She did at one point comment that she would have preferred to go to Morrisons… all that scenery and freedom and adventure and my little minx misses the  blinking salad bar at a supermarket!)J did alot better after eating- running free and finding bracken and identifying trees. But he has become terrified of flies…. not the big bluebottles or even house flies but the little ‘ midge’ like things and a high pitched screams were a constant companion today. This is the main reason why he was sat on my knee in the pic as he had spotted one near his drink and was VERY unhappy about it.. But i got a lovely cuddle with my boy  ( look at his lovely smile!)whilst consoling him, so every cloud and all that ….:) it is just lovely to see my children being carefree and exploring together. I couldn’t miss out my little lady and she is pictured below, enjoying her sandwich ( her favourite cold, quorn sausages were gone in under a minute!)

In all fairness I still do not think J is sleeping well at all. I know he isn’t having the terrible nightmares he once had ( but I believe these were school related so we will see in September…) but twice  we have heard him talking in the night and  I know when I have been in his bed with him he can be yawning and crying with tiredness but it is like his little mind just won’t let him shut down:( he doesn’t always wake us up either and I am so worried about how he must feel as he looks exhausted. This will only get worse with the stress of school and I cannot force my little man to sleep. Hubby has set up a camera in his room tonight to try and work out what is going on for him as it will be something worth mentioning to the professionals… when we finally get to the front of the queue for formal assessment… roll on 16 or so months… If his sleep pattern does not improve I may have to think of seeing a gp to help him- he can’t function properly for 5 full days of school and the added anxiety that brings.

Before I forget- another positive… j absolutely floored us yesterday by reading ‘ Gaston’s messy cave’ pretty much from cover to cover ( only struggling with a couple of words) and he was definitely reading it, it wasn’t from memory! the text isn’t particularly simple, so we were amazed by his reading skills.,Clever boy….am so glad he gains such pleasure from his books:)

Free Autism Puzzle Chart

I made this a while ago as I wanted to make my own bracelet. It isn’t anything fancy, I have no special software, just M’s felt tip pens! It could be used for crochet ( as I used it for a for a bracelet in fine cotton and 1.5-2mm crochet hook but looks good too done with double knitting ( light worsted weight yarn) and a 4 mm hook and could be made into a belt or even a guitar strap. It could be used for cross stitch, intarsia knitting ( headband, belt, bottom of a jumper maybe?), or even plastic canvas. The pattern just repeats itself once you reach the end of the block. feel free to use it if it is of any use for anyone:) Huge apologies for the amateurish chart, but it does the job I suppose:) Please note that the ‘ black’ in the chart should actually be dark blue…. M didn’t have a dark blue, so had to use black!

6 Good days and then a blip!

Well, as the title suggests J has had 6 amazing days with only a couple of little wobbles. I cannot remember the last time he has been so laid back, stress free and less routine orientated. It has been just wonderful. We have managed busy going on in the local park, events in the library, walking home a different route (!)… even handling the fact there was no 7 up in the house!

Then we were due to go to an event organised by our local Autism support group yesterday ( we have been once before and J loved it.. it is held in a private day nursery but the groups has it to themselves for  couple hours each month.) and we were both looking forward to it and J woke up at 3 am (!) and was reading his books, lights on full blast, counting to 100 and playing with his kittens and I think it was largely due to the fact that he was excited about going. ( wondering now what Christmas will be like…..?looking forward to it though:))

So we arrive and it didn’t ‘ feel right’ and there was no-one I recognised on the ‘ door’ as it were. Then another lady from the same group asked if I knew it was definitely on. ( J stood beside me now and wanting to go in) Long story short… it had been cancelled and only the 2 of us had not been informed. Poor J, he didn’t understand as other kids were going in. The other poor lady had driven over half hour to get there with 2 children on the spectrum. Neither of us were happy about telling our little ones the situation.

I am so hugely proud of the way J handled it… no meltdown, no screaming, just a little disappointed and lip quivering a bit. My poor boy:( We ended up having a lovely time at Oakwell Hall  and went on the big slide ( he loves this) ran all through the nature trail together, enjoyed an ice cream and then bought a couple of ‘ wiggly rubbery’ snakes he fell in love with for him and M in the gift shop. If the same had happened 2 weeks ago, my boy would still be recovering now from the change. I know mistakes happen but you would think the organisers would triple check with regards to informing people of any changes  as children on the spectrum really struggle with , often, even minor changes.

 

Today, he has been ‘ on the edge’ all day. Sensory issues galore…. sunlight through the window, rolling his head along the sofa, constantly sucking or biting something… his fingers, arms, wrist, watch strap, remote control,… toys …. etc Needing control over mealtimes,any  games played, angry over the littlest things. Shouting , screaming… seems to have a new vocal stim that is basically just a loud, shrill scream. he his hugely into messing around with words too- he gets a real pleasure from over pronouncing words ending with a  ‘k’ and just plain pronouncing words incorrectly.( sometimes he does it for fun, sometimes when grumpy.)

 

Anyway, he seems to be relaxed again before bed and has enjoyed a couple of foot massages. I am wondering if it is the aftermath of being awake from 3 am yesterday ( I know feel like a zombie today) and / or dealing with the changes in plan yesterday. Also, I have done a bit of my work today ( craft business , based at home.) I haven’t done alot recently because of J and then just feeling so wiped out I haven’t had any creative energy. But I really want to try make some cash towards M’s birthday ( my little lady is nearly 3- I can’t believe it!) and horse riding for J and then I so want to save up some money to try and learn to drive… for our safety more than anything. So I set about getting another of my designs typed up and listed for sale. Both my ‘ babies’ haven’t known mum work for a while and maybe J didn’t handle that very well, despite prior warning. I know M didn’t- she always says she misses mummy.  My craft work aswell as generating a ( very!) small amount of money is also my coping mechanism I think… i drift off and relax with a crochet hook or knitting needles or whilst slaving away over a sewing machine and I think it refreshes me and makes me a better mum. I love showing the things I make to J and M and, of course, making things for them too. They are my greatest inspiration and * cough*  my greatest critics too!

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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!