Housing!

For the past year J and I have lived in the local sink estate. I hate the term "sink estate"as it condemns anyone living there as the type of person to be avoided.  I have seen terrible things here - a fight among two girls and a man which ended with one of the girls leaving wheeling her six month old baby. I have seen blatent drug dealing and witnessed and experienced lots of anti social behaviour. On the other hand I have also had good neighbours, people who like me are just living life peacefully, going to work, coming home and raising children. I have seen all the work which goes on here to try and promote community cohesiveness. There is an active community centre, football coaching, a cybercafe, Health and Wellness projects and a regular newsletter advertising upcoming events for residents. In short it's not all bad here apart from a few bad apples - and everyone here knows who these people are.
With J's diagnosis I decided without much hope to apply for a housing transfer. J is very very active and there are times when I wish we had a garden so that he could run around outside safely and burn off some energy. The Occupational Therapist also suggested a garden would help as it could contain a small trampoline which would help J's hypermobile joints.
I sent in a transfer application and completed a medical form regarding J and sent this back with a covering letter and photocopies of J's medical letters. I heard nothing and initially thought that J had not passed the medical officer's assessment of need. I was told by a neighbour of J's grandmother (who works in housing allocations) that the medical officer was notoriously sparing with what he would pass and what he wouldn't. To me with an extra bedroom above my needs it would seem he had decided there was enough room in the house to meet J's needs. Then out of the blue a letter came stating that we had been assessed as "Band F" and "Medium Priority". I was delighted as obviously the medical officer had given extra housing points for J. My Mum's neighbour though was negative " you'll wait forever" she said "the two bedroom places are in such short supply they are going to those on Band C and above". I was a bit dejected by this but decided that I would make the best of things and splash out on carpet for the spare room and vinyl for the kitchen, bathroom and toilet. It cost a small fortune but was worth it as everywhere looked so much better. This was August.

Last week and again out of the blue a letter came stating that we had been reassessed and were now in Band C (High Priority). I was over the moon as we were now in the magical realms of "Band C and above" but still expected a long wait for re-housing. On Saturday I recveived a formal offer of a property near to my Mum and sister. I drove out to see it immediately, it's a little redbrick house built in the last five years or so with a good sized garden for J. It had evidently been left in a hurry as there was still washing up in the sink. A note on the front door stated that "the rabbit has now been rehomed, if you have any queries contact S at Swan Housing".

Yesterday I took all papers to Swan Housing and an application form, the Lettings Officer chatted for a while and said that there had been panic about the rabbit with the staff even being asked if they could rehome him until someone else stepped in. The Lettings Officer said she would get a letter with a formal offer out to me and we could arrange a viewing as soon as possible.  Driving back via the house I could see a small truck packed to the hilt with property from the house. The men clearing said everything had been left including baby photos and children's clothes. I found this sad - someone had evidently just walked out of the door taking a child (or children) two cats in baskets and a small bag according to the neighbour. The men clearing thought there might be a debt such as rent arrears behind the sudden vacation of the property. All the property goes into storage until the owner can collect it.

I hope to be in within the next two weeks all being well and am surveying this house with despair - so much to organize and pack. Thank goodness for supportive family who have simply said "don't worry we will all help". I love them all so much and am feeling so fortunate.

Unequal fights and battles.

This is not a blog about J but a rant about the unfairness of life sometimes.


I hate cancer, it’s the most godawful and unfair disease which can seemingly strike without warning and  has no certainties about it. In the same way I hate seeing terms and words like “fighting” cancer and "battling" because without a doubt you cannot “fight” or "battle" cancer. Fighting suggests equality and there is nothing equal in this fight, you take the treatment and you hope for the best. You keep a positive frame of mind (or perhaps are a positive person anyway) and if you are lucky the drugs will work and you will be cured. If you are not lucky the cancer will return and find somewhere else to take root. Then when you have your backache/painful leg etc a doctor will talk about “muscular pain” and treat accordingly before finally admitting defeat and suggesting a scan which shows the cancer has spread to your spine, leg, liver or anywhere else it feels like.


I don’t have cancer, I have seen plenty of people WITH cancer who fall into the “lucky” category and lived to tell the tale. I have met others who fell into the second category and are no longer with us. I am closer still to people who are IN the second category and still with us.

Both my aunties have cancer – both are women who have lived productive lives and given so much to others. One auntie is well and truly in remission following a rocky summer, the other auntie having had several periods of remission suddenly seems to be going downhill and there is nothing I or anyone else can do about it – there is no fight because without a doubt this disease will succeed sooner or hopefully later.

My auntie is a wonderful, warm and caring person, a mother, a wife and much loved sister. The past few years have been up and down since her diagnosis of uterine cancer three years ago. The cancer was a “Grade One” and “just about the lowest grade it could be”. Other memorable phrases are “this cancer is contained – it doesn’t go anywhere” (forgive me here while I have a hollow laugh), and “as an insurance you could have some radiotherapy” (my aunt did).

So fast forward a few months and she is bleeding “it’s a polyp” (oh yeah) and even more months while she waited for a consultant appointment to be told the polyp had “changed”. Surgery followed and results showed spread of the initial cancer. More Radiotherapy followed and things settled apart from lower leg pain which was deemed “muscular pain” for months and months before a GP finally arranged an X-Ray which showed changes in the bone (you don’t need to be Einstein to work out what these changes were).

Next Consultant appointment:-

“Oh it’s spread to the lower leg – gosh that’s rare” (No sh*t Sherlock – that’s why you’ve been confidently saying “muscle pain” for the past few months then). Surgery followed and a pin to prevent the bone breaking was inserted. Fast forward another year and “my gosh that’s not really working either – let’s get a second opinion from Stanmore” (if only they had done this initially).

The Professor at Stanmore was lovely and experienced and recommended “an above knee amputation in the New Year – either here or at your local hospital” (Stanmore Stanmore Stanmore NOT the local hospital with doctors who told my aunt her lower leg pain was “muscular” so many times).

Just two weeks on things are changing, a bad dog bite to her hand has meant more surgery for my aunt and she is becoming forgetful and unable to get her words out. She looks tired and unwell despite several days of antibiotics (including IV antibiotics), painkillers and a blood transfusion following surgery at the weekend. More worryingly when my Mum was helping my aunt dress when she was discharged from hospital she noticed a large swelling just below the shoulder blade. I am so angry about the waits she endured earlier on in her treatment because we just don’t know if more urgent treatment would have made a difference. Now all we can do is support her, love her and make sure she does not feel isolated and alone (not likely with my wonderful 85 year old Uncle who is doing everything for her). We are visiting when we can and getting bits in for her – she is eating and drinking and still on good form but frustrated by her inability to find the words she wants to. I feel the next few weeks will bring more information and I am not confident this information will be positive.

Concrete Bowels!

From early child hood J has had an ability to avoid opening his bowels for a few days at a time. This is partly because he is usually very busy and does not have time to sit on the toilet. The other reason is because he has obviously felt pain in the past after his episodes of withholding and so wants to avoid this. I have had several people tell me this is very spectrum like behaviour, however I have seen it lots in neuro-typical children too and am unconvinced about the association with the autistic spectrum.

So - this week J has managed a whole 8 days without opening his bowels. I have tried Lactulose, Movicol (ongoing) and glycerine suppositories all to no avail. I have watched with trepidation as he eats and adds more waste to the bulk already there and I have seen J adopt a variety of positions much like a woman in labour to cope with the pain he was experiencing in his rectum and abdomen.  I have had him sitting on the loo with his feet on a box and blowing bubbles, I have had him rocking back and forth and singing songs all to no avail. As the days went on I was increasingly both anxious and amazed by his abilty to hold on to it all.  By Day 8 I was amazed he could even walk!

By day 7 it was getting horrible, J was experiencing increasing stomach cramps but was totally unable to cope with the idea of sitting on the toilet. Offers of another glycerine suppository were aggressively refused and I was in despair. I spoke to NHS Direct who were lovely and agreed that I needed to see a doctor. I phoned the GP surgery and asked if a GP could ring me back, a lovely lady doctor spent ages going through what we had already tried and agreed I had tried all the right things - she suggested buying some Senna.   A trip to the local Pharmacy followed where the pharmacist would not sell me Senna because "we don't usually sell this for children", however did agree to give me some Ex-Lax. I gave this to J with his nightly dose of Lactulose.

By Day 8 J was doubled in pain, crying and refusing to move - his activity levels were certainly curtailed. I rang the GP surgery again but the phone rang and rang because it was morning and they were busy.  J then became hysterical when he discovered blood after sitting on the toilet and I made a snap decision to take him to A+E for advice and to ask a doctor to feel J's abdomen.  The staff in A+E were brilliant with J and accepted his refusals to have his temperature taken. I was embarassed by J's refusals but they took it in their stride. I was very clear with J that the doctor would have to feel his tummy and that he HAD to co-operate, J agreed until time for co-operation began. He flatly refused to enter the room until he had questioned the doctor closely about his intentions - "no J I am not going to use any needles I just want to feel your tummy". Grudgingly J agreed to lie on the couch but told the doctor "don't cut me open", the doctor kindly agreed NOT to do this and peace reigned. The doctor could feel that J was "bunged up to the eyeballs" (my words and not his) and suggested that he give a prescription for Senna that the pharmacist would not sell me the night before. Anything else was out of the question as J would not co-operate.

So Senna was given at about 5pm to work overnight and by 6pm the combined effect of the rest of the stuff given began to make itself felt. J was hysterical and the only thing he would agree to was a bath. I ran the bath and J got in with help as he was by this point hardly able to move. Twenty minutes later J shrieked that he had "pooed in the bath Mum" and I went in to find J sat sobbing in pain - he had managed, however to have the beginnings (large) of a clear out. He was refusing to move due to the pain and it took 10 mins to persuade him that he could not stay in the bath and had to either climb out or let me lift him out. In the end I lifted him out to yells of pain and he stood wrapped in a towel and crying. Just a few minutes later he rushed into the loo and cleared out masses more and then we had more minutes of refusal to wipe his bottom "because it hurts Mum". It took some time to persuade him that we needed to get him clean or he would remain sore. I resorted to bribary at this point - wipe his bum or let me do so and he could have his pick from the tin of Celebrations bought for Xmas. It was no contest and despite crying he managed with help to clean himself. The tin of Celebrations (appropriate) was brought up and a few sweets chosen.

An hour later J announced that "nothing hurts anymore" and began bouncing on the bed.

I had a headache!

Ritalin and ADHD

My life as J's mother seems full of contradictions and things that I WILL not do or believe in until I am forced to confront them. It has now been confirmed for definite that J is definitely showing all positive signs of ADHD according to the observations and questionnaires completed by myself and others. He scored so highly in fact that the paediatrician had no hesitation in saying that she would advise me to go down a medication route to see if this would help. I came away with consent forms, the patient information sheet from a box of Ritalin and several books about ADHD including one to use with J which reiterates (as I will) that "ADHD is not an excuse for bad behaviour". I like this phrase very much because J is definitely a child to find an excuse if the need arises - using ADHD as an excuse will NOT be an option.

So to Ritalin, I was always the parent who said (and still do) "not on my child". Talking to others has confiormed this to some degree as everyone has an opinion on Ritalin and I have heard horror stories. I suppose for me the question is not whether or not I elect to give Ritalin a trial for J but more to ask what the paediatrician hopes Ritalin can do positively for J. To this unfortunately there is no clear answer. I am very clear that Ritalin is not a magic pill and even if I do try it then there will need to be other management techniques as well.  I have asked if J could have it "just for his days at school" and not take it in the holidays or at weekends and if he could just have a very short trial. In short I am unsure still - the thought that there could be something which might make learning a bit easier for J is very tempting but then again it means adding a powerful stimulant medication to his young body and I baulk at this.

Today there has been a phone call from the paediatrician - I have returned the call and am waiting to hear back from her. Questions are mulling round my head and I am devouring a book called Beyond Ritalin which dispels the myths (both positive and negative) about the drug and also talks of alternative and non medication programmes. The book is fairly old but seems good and readable - it is also very rational and "rational" is what I need more than anything at the moment as I try to make a decision. J's Dad is of the opinion that unless we try it with J we will never know if it can help him, I agree with this but still have my own qualms about it all.

J's behaviour can be challenging at times but on the whole I manage my life around this and he is not generally a problem at home or in school. In school the major problem is his level of concentration and he is not "bouncing off the walls" in the same way that others are with ADHD. He struggles though and things come slowly to him because of his poor attention span - if Ritalin can help this then I would feel wrong in not allowing a trial of it.

I sway one way and then the other and suspect I will make a snap decision following a further conversation with the consultant in the next few days. If I do elect to try it then I will note any effect it has for J. If it doesn't work then at least I can cross it off the list and move on to other ways of helping J manage it.

Caged in Chaos



L, me and L's brother in 1975




“......there are times when I feel as though I am lying diagonal in a parallel universe – it often feels as though the Gods (and Goddesses) miswrote the postcode and packed me off to the wrong planet at birth. I have quite an unusual perspective on life at times and while this is always a guarantee of colourful originality it can also feel like a cage”




The above quote comes from a book called “Caged In Chaos”. The book was written by a sixteen year old girl with Dyspraxia. Dyspraxia is a label which has been attached to J to go along with all the others he now has and means that while many of us carry out some everyday skills without a thought J is left behind.
Dyspraxia (also known as Developmental Co-ordination Disorder or DCD) comes from two Greek words: dys (abnormal) and praxis (doing). It goes way beyond this simple translation though – the things which people take for granted can literally be impossible for those with dyspraxia. Neither is there a neat uniform way of diagnosing the disorder – dyspraxics don’t do “neat and uniform” and in the same way they do not “do” organization either. This explains why J’s room is always such a mess but might also explain why his mother is totally unable to co-ordinate either and why she finds it hard to know “where to start” at times.

I am certain I have some attention deficit problems and recently considered going the whole hog and pushing for a diagnosis of ADD/ADHD for myself. My GP talked me out of this and I am grateful that she did as it was going to cost nigh on £800 for a private consultation and diagnosis if appropriate.
Dyspraxia though I can see myself fitting into far more and the childhood stuff fits me far more. So does the adult stuff and suddenly the comments of “bloody hell Mand – look at the state of your desk” and the resigned laughter from my work colleagues does not seem so strange! The same laughter which has followed me throughout my working life and which has made me seriously doubt myself and my abilities at times.

Yep – definitely lying diagonal in a parallel universe with organization a closed book. Poor J didn’t stand a chance with my genes, thankfully like me he is easy going and getting far more support in school than I ever did. I am hoping the support J receives will leave him with much better self esteem than I have had over the years as there are many times when I have not felt “good enough” or good about myself. As a child I lost myself in books and in the world of Enid Blyton, up the Faraway Tree and into lands beyond with characters as out of place on the Earth as I felt myself at times. “Always lost in a book” one teacher said years later “you would have got quite lost had it not been for the kind attentions of L” my best childhood friend.

Yet despite all these problems I have achieved and as my GP pointed out “achieved well”. The rest of the issues need addressing with routines and structures – something my ad-hoc nature rails against, but which is the only answer to the organisation. Lack of organization is the one thing I hate about myself – when my mind is in chaos the muddle spreads outside of me...... or is it the other way round
I am trying even if it doesn’t always appear so but J is cuddled everyday first. Monthly appointments at work are now booked in advance and written down for clients. An A4 pad is used to write myself tasks and cross out when done. At home I prepare clothes the night before so J’s uniform and my clothes are chosen, hung up and ready for us after washing. Finally my latest task is to shine the sink every night – it works – I feel far better when I get up in the morning if the sink is clean and empty.

Oral sensory issues

Since J has been a baby he has been very sensory seeking requiring additional input to the world around him in order to cope. Even as a tiny baby he needed to cling onto my finger to sleep and as a 16 week old he was wriggling down out of a car seat until he was kneeling on the floor - totally unable to go anywhere else and enraged by his sudden  inability to go any further. At 5.5 months J began to crawl and I was very proud......... for about 40 mins until I realised what this sudden ability could do for J. Suddenly he could get anywhere and suddenly I had to be behind him every step of the way to generally keep J safe.
As J got older we began to notice other issues, high activity levels being one and constant drooling being another. J dribbled/drooled until he was well past 5, as he got older the amount of drool decreased but he still required several changes of T-Shirt each day for his pre-school years.
Now at age 7.9, J is still having sensory issues with his mouth, mouthing objects has become a real issue and J is mouthing many non-food items including Lego, bottle tops, paper towels, pencils, sweatshirt sleeves etc etc etc. Food is also an issue and J will eat non-stop given the opportunity, this is now impacting upon his weight which is increasing too fast for his height.
Some time ago I said to J that I had noticed that he was always chewing things such as Lego etc and I asked him why he did this,  J replied that it "felt nice" and I really thought no more of this beyond realising that it evidently gave him some sensory feedback.

Since starting in the Junior school though this sensory seeking has become an issue, J is chewing his pencil and paper towels and it is causing problems. His class teacher is worried because in addition to the pencil and paper towels J is also chewing the tiny lids from bottles of water and is concerned about him choking. I asked J if this was a problem in the Infant school too and he says it was which is interesting because I never heard about it. However, given the sensory issues he has had throughout life I am not surprised to hear this is the continuation of a problem rather than anything new.

So yesterday I ordered a chewy tube for J to use in school. There has been plenty of research into these and the consensus is that these "chewies" are beneficial for sensory seeking children in school as it helps calm them and so aids their concentration. I will report back to say if it does the same for J......

Consequences.....Or "keeping J in the classroom"

A charming little habit exhibited by J in his less polite moments is to storm from the classroom in a huff when he does not want to do something or if an activity does not go the way he expects. This has been a problem from Reception year onwards. In the Infant school they tolerated this little habit, monitored it and found other ways to teach what they needed to. The Junior school however, is made of sterner stuff and J now has consequences for leaving the classroom. It is very simple - if J leaves the classroom in a huff he loses one minute of playtime. The knock on effect of this is that J is NOT first in the queue at the tuck shop for his pretzels. When you consider that J's other two passions in life are "being first" in any queue and "food" then I I think you have to agree that the Junior school have hit on a pretty effective strategy. The storms from the classroom are already reducing and it's only the third week of term. Now if only I can find a way to adapt this strategy at home..........

Battle Hamsters.......

Last Christmas little girls everywhere went mad for Zhu Zhu Hamsters - sweet little chirping toy hamsters which could be fussed, dressed and groomed. They naturally has their own accessories and homes complete with hamster cars, houses and tracks. Even J was tempted and despite being a non gender bothered parent (J has a Baby Annabel doll - now sadly neglected) I declined to buy him one of these hamsters. I pointed out not unreasonably that he had his own real live hamster in thew shape of Dora and that these were girls toys. As J is at an age where you "don't play with girls toys" this seemed to settle the matter and we moved on with life.

Meanwhile somewhere in a no doubt luxurious board room, toy manufacturers were deep in discussion about the runaway success of their product. Zhu Zhu Hamsters were sold out everywhere and had been the "must have" toy of Christmas 2009. All around the country little girls were grooming and fussing over their toy hamsters and no doubt sorting out the track and play areas for their new "babies". Boys were opening whatever present they had and perhaps looking on with some envy at their sisters! Toy manufacturers were feeling a challenge........ "how" they thought "can we flog these hamsters to the boys out there"?

And then a bright spark realised that boys like battles, boys like armour, boys like crashes and action.

Ping!

"BATTLE HAMSTERS of all colours  - green, brown, grey, mottled with symbols on their backs and a mean look in the eyes".

"But what can we call them"?

Zhu Zhu Hamsters as a name was out because of the connotation with girls toys and no little boy of a certain age would be seen dead with a toy which had such connections. And so they thought and thought and then thought some more before realising that battle hamsters would have a dead hard name denoting their  years of dedication to battle and so Kung Zhu Hamsters were born.

J has wanted one since seeing the first advert - he now has two who both have armour and J plays with them non-stop. I can see a busy Xmas approaching and mindful of last year will be getting in early to prepare for a Christmas and a 20th December birthday. I think the Battle Arena will be a must.......

Snappy answers to annoying comments regarding autism.....

With full apologies and acknowlegement to the people I nicked this from and adapted.

If you're a parent with a child on the spectrum, you've probably responded to the same annoying remarks and questions a thousand times. Here's a handy list of responses that...you'll probably never use out loud (but are fun to imagine using)!

1. He can’t be autistic -- he can talk! (or make eye contact, smile, engage)
And yet, amazingly, he’s still autistic! Y’see, autism is a spectrum disorder, and that means …

2. Oh, he must be SO good at maths! (or science or music)
Actually, his great talent is in memorizing and reciting lines from Sponge Bob or anything else which helps him communicate his wants and needs or emotions.

3. All he needs is more discipline, and he’ll get the message. You need to be firmer with him.
Yup, it’s true -- if you give a child enough time outs, he’ll just stop being autistic. And if I speak French to you loudly enough, you’ll become fluent!

4. You poor thing, it must be so upsetting to have a child with a disability. (Thankfully nobody has ever said this to me about J)
Yes, it can be hard. And pity really helps me to get through the day and feel better about myself and my child. So…thanks so much!

5. Will he be able to go to college (or get married or hold down a job)?
Hm. Good question. By the way, has your daughter’s divorce been finalized yet? And I’m so sorry to hear that your son was recently laid off from his job…

6. I have a friend whose child was autistic, and she cured him!
Wow! So I guess she’s enjoying the millions she made after figuring out how to cure autism? I bet her second home is a yacht!

7. If he can’t behave properly, you shouldn’t BRING him shopping!
Wow -- that would be great. Should I fax you my grocery list, or send it by email? I’ll really enjoy the delivery service! (Actually I try my best to either shop online and get it all delivered or shop when J is at school)

8. We can’t include him in typical classes, it wouldn’t be fair to the other kids.
Hm, that’s an interesting perspective. So I guess you have a pretty big endowment to pay for all the law suits? That must be great!

Imagination

Looks just like a box doesn’t it?

But add a pillow case tied to a coat hanger and the inside of the kitchen roll and you have a boat with which to sail the seven seas.

We even had fish

I love imagination – it’s great.

The playroom.

A rapidly untidied playroom - hopefully rapidly tidied!

After two weeks away with his Dad and spending a lovely time in Wales with Nanna and Bapa J has returned home happy, healthy and lively. Oh how I have missed him - now he is back I feel complete again.

While J has been away we have had a spot of "Changing Rooms" and the spare room (full of junk and unloved) is now freshly painted and carpeted with a sofa bed, J's toys, and a rug with printed roads. J loves it - it's been done to try and give a distinct difference and feel between a room for play and a room for sleep. It's also been done to mark the fact that J is no longer a baby or small child but a big boy approaching 8 who is going into the juniors. As such it felt only right to give him a bigger boys room - he is delighted and the road rug promptly became a city with a police station and a zoo. The police station saw some use as driver after driver was stopped for speeding and thrown unceremoniously into the cells! I have made a mental note to steer J clear from a career in law enforcement for all our sakes.

Within two hours of J arriving home there were sweet wrappers in places there should not have been and sticky fingers everywhere. Oh well - getting organized in his absence was nice and housework can wait until we've finished playing.

I found the poem below several years ago and it sums me up perfectly.

I hope that my child, looking back on today

Will remember a mother who had time to play;

Because children grow up while you're not looking,

There are years ahead for cleaning and cooking.

So, quiet now cobwebs, dust go to sleep.

I'm playing with my child, and children don't keep.

 
Perfect.

The "Police State" City

Random thoughts................

A few weeks ago I was informed that an application for Disability Living Allowance for J had been successful and with this came some back pay.  With J away in Wales until next week (I am missing him sooooooo much) I have been doing a spot of "Changing Rooms" using the back pay. I am fortunate enough to have a spare room here and am hoping to create a play room for J in order to make a distinct difference in feel from a room to play and a room to sleep. At the same time I am looking at sensory lighting and relaxing colour for J's bedroom in order to make this a room to really relax and settle to sleep in. I am under no illusions that J will actually stay in bed because J is not like that but at least if the toys are out of the room it will curtail his activities somewhat. So the spare room has been painted and a carpet goes down on Wednesday after which I will offer the carpet fitters and extra £20 if they will help me get the heavy and bulky sofa bed up the stairs so that J's play room can have it's own little sofa.

We also have a new Hamster named Bramble who is tame and utterly gorgeous as you can see.

Bramble came from a lady near Colchester who is hamster mad and who breeds and homes very tame hamsters.

Drusilla my very naughty Tortie cat thinks Bramble is just delightful and spends many an evening sitting hopefully by the cage. Once the evening is over though Drusilla is unceremoniously evicted from the living room where the cage is and the door to the room is firmly shut. I am under no illusions about my cat.............




An application I made for re-housing has already been processed by Basildon Council. As they are still working on the applications for last November this is fabulous. My application has been processed because the form I completed regarding J was seen and assessed by the medical officer who has agreed we need rehousing on medical grounds and that J needs a garden. Having said that though there is a dearth of social housing and my priority banding means that it is likely I will be housed sometime in the next 7-10 years if I am lucky. However, the property we currently live in is coming down within the next five years (unless the coalition Govt decides otherwise) so we'll be re-housed then anyway. In the meantime J will have to continue being very active indoors or there is a park opposite. As J cannot be outside unsupervised this means I would have be with him - one reason why a garden with a tampoline he could go mad on would be great.

Finally and most importantly I had a phone call from the special educational needs team last week to tell me that J's case had been to their panel and that from September they will be assessing him for a Statement of Special Educational Need. I am over the moon about this as it will give J a guarenteed plan of support to help him access the curriculum in school. J's school has always been very good with their support but a Statement would ensure they receive the money needed to employ somebody specifically to be with J in school on a one to one basis. Brilliant!

So J - I am missing you and can't wait to have you home again. I know you are having fun with Daddy, Nanna and Bapa and am so glad you are enjoying yourself. I am looking forward to a cuddle with my darling boy but not looking forward to the first occasion when he loses his temper and stomps up the stairs.

Farewell Dora the Explorer

Goodbye our little furry friend

This is a beginning, not the end

Off to Hammie Heaven you go

Away from cold and rain and snow

Sunflower seeds and peanuts await

Sunshine and laughter for our very best mate

 

(with thanks to a Fab :-) Mumsnetter's son who wrote this poem about his hamster when it died)

 

RIP Dora -  a dear little hamster

J through the looking glass

From a very young age J was fascinated by his reflection in a mirror – nothing very significant in that as most children are keen to look in a mirror at themselves. However, from about the age of 3 J’s mirror gazing became slightly different and very entertaining to watch. J would stand in front of the mirror and pull a variety of facial expressions – he would even practice crying sounds while watching himself. Naturally I put all this down to his tendency to show off and perform to an audience. I even looked fondly and thought “Bless – just like his Dad” at some of the more comedic expressions and confidently predicted a love of drama.




At the age of 7 J still does this “mirror” stuff and practices a big beaming smile among other expressions. When J feels he has done something wrong or if he feels I am stressed he will gain my attention and say “look Mum” and produce the biggest most beaming-est smile possible – it lights up his whole face and includes his eyes. It is identical to the one he produces when he looks in a mirror.



Today I attended an autism workshop looking at sleep problems in school-age children on the spectrum. As part of the workshop we watched a series of short films about autistic children and the sleep issues which affect them and their families. One showed a little boy of about 9 being asked to go to bed.



“Time to go to bed Zac”



“Nooo” was the response shouted loudly by Zac all the while he walked up and down in front of a mirror pulling a variety of expressions.



“Yes – you need to put your PJ’s on”



“No – don’t want to go to bed” again said loudly but more calmly as Zac became absorbed in this mirror gazing. He pulled several expressions and watched himself closely, sometimes practicing a grimace or smile again.



For me it was a bit of a light-bulb moment and H (the speech and language specialist) said that children with Autistic Spectrum Disorder find facial expressions and the world in general very confusing. It is not unheard of for them to “practice” the expressions they see around them in front of a mirror to try and make sense of them. In this way Zac could see the facial expressions which went along with his upset feelings around going to bed.



So J has been doing this mirror practicing to some extent too and I’d had no idea that it was significant as behaviour. To be perfectly honest I just thought J was a bit of an actor – practicing his performances prior to testing them out to their fullest extent on me. I was wrong but still feel his ability to “perform” and practice these things won’t do any harm in his drama group which starts tonight.

SNAP-tastic!

After my rather melacholy post last time I promised J's Dad that this one would be much more positive... and it is.

When J was diagnosed there was a lady in attendance who is manager of the local special needs centre. Hilary set up SNAP with other parents in the 1990s when she realised how woefully inadequate the support services for parents of children with special needs were. Over the years SNAP has expanded and grown and now has it's own premises in the grounds of the old Warley Hospital.  It is well used by families all over south Essex and runs a variety of courses and groups for parents and children. One of these groups is SNAPTASTIC a "stay and play" group aimed at children 5-13. At £3.50 a session it is very affordable and once the Disability Living Allowance has been agreed (not holding my breath on that one) will be a regular activity for J.
The session is based around fun and support for both children and parents, the centre is fully open and there are plenty of activities for the children. Upstairs in the meeting room there is seating, biscuits and tea or coffee for the parents. While the parents drink tea and chat the parent advisors circulate and are ready to offer support and advice as needed. Meanwhile downstairs in the playroom an army of staff and volunteers play with the children and supervise the SNAPTASTIC session.
J has attended only one session so far as they are not weekly and immedietly made a friend. A is 7 like J and also like J is on the autistic spectrum. J and A met at the door of the session and seemingly recognised kindred spirits in each other. Once the door to the playroom was opened they were off to run, jump, dress up in the costumes and have fun. The supervisors and volunteers had a hard job just persuading them both to stop and have a drink as the sweat poured off them both. Everyone commented on the fact that they seemed to be long lost friends who had known each other all their lives! It was great to see and J did not look for me in a whole hour. While J was playing hard downstairs I was able to wander upstairs to drink coffee and talk with other parents including A's Mum. It was so helpful to do this as I recognised so many similar problems between J and some of the other children. In many ways it was a bittersweet experience, J had so much fun and that was wonderful to see, but in seeing him enjoying the session I also recognised the fact that it was with these special children that J fitted in perfectly well - a confirmation of the diagnosis if you like.
So June approaches and J has been booked in for more SNAPTASTIC sessions and also the drama group which starts in June too. I have booked myself onto a series of four workshops looking at various aspects of daily living - sleeping, eating, dressing and toiletting all focused on the needs of the school age child on the autistic spectrum. This means that there will be times when we not only attend the centre twice in one week but on occasions twice in one day.... I can't wait.

Sometimes

Sometimes I find J hard work

Sometimes I get frustrated and cross with him and then I feel guilty.

Sometimes I get fed up with saying “Sorry” to all and sundry for his poor behaviour and lack of impulse control

Sometimes I would give anything for the ASD and ADHD to go away so that people could see the lovely little boy underneath it all.

Sometimes I want to scream about invisible disabilities - a child in a wheelchair is clearly disabled and allowances are (well should be) made. Nobody understands about less visible challenges to a child's actions and behaviour or even considers them.

Sometimes I want to scream at the smug parents with their well behaved children who watch J with an irritated eye.

Sometimes I feel frustrated that the rest of the world does not understand.

Sometimes I wish J came with a volume control

Sometimes I feel I am not up to the job of parenting J and wonder if he would be different with a more competent and organized Mum.

Sometimes the stress finds me in this self pitying mood which needs to be kicked into touch.

But thankfully this IS only “Sometimes”. Thankfully MOST of the time I am more positive than this.

Unfortunately this is not one of those times.

Autism and Aspergers Myths

1. Children with Autism never make eye contact?
FALSE

2. Inside an Autistic child is a genius?
FALSE Most children with Austim will exhibit significant delays in some areas of mental processing and a percentage exhibit above normal intelligence.

3. Autistic children do not talk?
FALSE - the vast majority have language development.

4. Children with Autism can't show affection?
FALSE, This can be difficult for most Autistic children but not all.

5. Autism can be outgrown?
FALSE. Autism is a lifelong condition but with help Autistic people can lead productive and happy lives.

6. Children with Autism cannot learn?
FALSE. It can just take a little time to figure out the best way to teach Autistic children.

7. Autism is rare?
FALSE

8. Asperger Syndrome is caused by poor parenting?
FALSE. Asperger syndrome is believed to be caused by a Genetic Componet.

9. People with Asperger Syndrome lack imagination?
FALSE. People with Asperger Syndrome typically possess vivid, creative and unique imaginations just look at the famous people with the condition. example: Satoshi Tajiri the Creator of POKEMON or even Hans Christian Anderson a famous Author of children's stories such as 'The Little Mermaid'

10. Autistic people are all alike?
FALSE. Everyone is different but there are some common problems with things such as difficulty with social communications.

11. Autistic people don't build relationships?
FALSE. Ok it's unlikely an Autistic child might be a very popular social person but it is very likely they will have a solid relationships with people with shared intrests. Plenty of Autistic people who marry will have good solid relationships.

12. Autistic people are a danger to society?
FALSE. Autistic people are not dangerous but some may exhibit violent behaviors but these are almost always caused by frustration, physical or sensory overload and its very rare they act violently out of malice.

FACTS

1 in 150 individuals has an Autism Spectrum Disorder
Autism is a form of autistic spectrum disorder or ASD. Other forms of ASD include Asperger syndrome, Childhood Disintegrative Disorder and Pervasive Developmental Disorder.

80% of all individuals with Autism learn to talk.

Each person with autism is a unique individual with special talents and gifts.

Children and adults with autistic spectrum disorders have difficulties with everyday social interaction.

People with Autism are often keen to make friends but due to their disability find this difficult. Their ability to develop friendships is generally limited as is their capacity to understand other people emotional expression.

Autism is a lifelong developmental disability with NO cure.

Some people with autistic spectrum disorders have accompanying learning disabilities but everyone with the condition shares a difficulty in making sense of the world

People with Autism who have an extraordinary talent are referred to as 'Autistic Savants',
only about 0.06% of Autistic people are 'Autistic Savants'.

Many thanks to Cheryl Ellison for the above.

Conversations with my son.

Last night I had the following conversation with J who started by telling me why he didn’t want to go to school today.


“I don’t want to go to school because I don’t like assembly”

Assembly has been the topic of conversation a few times with J so I dug a little deeper.

“Why don’t you like assembly J”?

”I don’t like assembly because I am bad and I got sent to the office”

“What did you do that was bad”?

“I can’t behave myself and I am naughty”

“What did you do that was naughty”?

“I can’t behave myself”

"Yes but what exactly did you do"

"I was bad"

We went round in circles like this for a few minutes with J seemingly unable to explain what he did that was bad or naughty or misbehaving. I am always wary of putting words into J’s mouth but can quite imagine the difficulties which might occur if you sit J in a largish hall with echoing sounds perfectly designed to overhype his senses. So I asked him if sitting still was a problem and back came the affirmative. “So” I said “you don’t like sitting there and you end up getting up and fidgeting”?

“Yes” said J “and I got sent to the office and so I cried-ed”

And then came the heartbreaker

“I am a fake boy”

“What’s a fake boy J”

“It means I am no good and I am stupid”

“No you are not stupid and you are good”

“No I am a fake boy and I need to be sent back to heaven”.

Cue lots of tears


Somehow I suspect his self esteem is rock bottom and that is not good. It stands to reason that if everyone around you is sailing along and you are not, if everyone else finds life a breeze and you don’t that you might start to wonder why.

I am now on the point of wondering how I explain autistic spectrum disorder and ADHD to J.

Maybe I start with “you are special because you think differently to other children”

Or maybe I watch a bit of the "Young, Autistic and Stagestruck" series with him.

Or maybe I find a book which explains his differences in a gentle way.

Whatever the choice I eventually make the fact is that at some point I will have to have that conversation with him rather than leave him floundering and wondering why everyone else can manage X, Y or Z and he cannot.

Young, Autistic and Stagestruck!

Young, Autistic and Stagestruck is a Channel4 programme following a diverse group of youngsters with one similarity, all the children and young people taking part are on the autistic spectrum like J. As J has so recently been diagnosed I was keen to see the programme and  see what  similarities the participants had with J. 

The parallels hit me in the face immedietly the show started as we saw Mollie a little girl with a BIG personality also on the autistic spectrum. Programme One opened with Mollie and right away I saw the likeness with J, I watched knowingly as she raged "I hate you" at her Mum, I recognized the self harming (hitting herself on the head) when raging and in Programme Two watched her head bang in temper as J still does at times and heard the same "er er" noise which J makes. J's Dad was watching some 170 miles away and we rang each other during virtually every commercial break "oh my goodness" and "did you see"? The similarities between Mollie and J were amazing and for the first time I could see how and why J fitted on the autistic spectrum.

Since seeing the first programme I have joined the Facebook group dedicated to the programme and after posting on the wall about the parallels between J and Mollie was touched to receive a message from Mollie's Mum. Mollie and J are indeed very similar - like peas in a pod in some ways but also poles apart and I don't envy S (Mollie's Mum) one little bit. However, Mollie's  actions are more marked and her behaviour is far more challenging than J's. Mollie's rages can be daily and last hours or even days, J's are shortlived and he can (at the moment) be distracted (thank goodness for ADHD - even his rages are unfocused).  I was even more in awe of S when she told me her older son has cerebal palsy but understood when she said she could cope with 20 of him but only 1 of Mollie! Truely the autistic child can be a challenge.

I am so grateful to S and P (Mollie's parents) and to Mollie for agreeing to take part in this programme which is opening up to a wider audience an understanding of what parenting the autistic child can be like. The rages, the intelligence, the talents (hearing Claire sing was lovely), the kindness and gentleness of Andrew, the fierce intelligence, anger and sadness of Ben who made me laugh out loud in the first episode by saying tartly (in response to the interviewer's question "Are you autistic"?) "Of course I'm autistic, what a stupid question, we could have done this interview over the phone". Ben's intelligence masks anger and an inability to cope with social communication which makes him say "I want to die". He knows he is different and does not like it. Other children had different problems, one used to smear faeces which must be a hideous problem to deal with,  others had been diagnosed at a late stage with a parent saying "I always knew he was different but nobody would listen". Varying children and young adults of varying ages - all demonstrating the similar traits of the autistic spectrum. I can't wait for the next installment....

and now what?

So –  a month has  elapsed and people are aware of the diagnosis which we received for J. The responses have been overwhelmingly supportive towards us and I am beginning to think towards the immediate future.  In among the positive stuff are the various “other bits” the comments that “ he doesn’t seem autistic” and “ are they sure”. These comments irritate me as they are similar to all the disbelief that goes through my own head. Yes “they” are sure about the ASD diagnosis – they spent over an hour observing and assessing J in addition to the reports from previous assessments both in school and at home. There is no doubt regarding the diagnosis and the only unknown factor is exactly where J lies on the spectrum. Even that is relatively easy – J is definitely at the high functioning end but not considered to meet the criteria for Asperger Syndrome.

In looking at J I notice the things I have always noticed but which in the context of his ASD diagnosis make much more sense. The echolalia for example – the stock phrases from films and TV programmes he uses in his communication, the echoing and repetition of phrases again and again so that I sometimes want to snap “be quiet”.  Not a good sign.

More than anything I notice the fact that his verbal skills mask a little boy who finds social situations and rules utterly confusing. On first meeting J he can appear to be very communicative (and he is), he will talk the proverbial off a donkey but dig a little deeper and the confusion will surface and this is behind his conflicts with other children when they occur. I am aware that at 7 all children can have their moments when social skills fail them. For J though this is more of a regular occurrence as he lives very much in the “here and now” hence the rages when things do not go his way.

 Watching J with his cousins recently was distressing as he failed to accept and understand their desire to change from the game he wanted to play to another game. They wanted to play Charades, and they wanted to act out film titles and book titles. It was totally beyond J even with the help given by L his older cousin and he went into a bit of a meltdown. We left and went home where he could play with Lego, use the Wii and generally understand and predict the outcomes.

I notice the meltdowns and the outcome of these, J will rage and scream, he will tell me “I hate you” and he will hit himself on the head in frustration.

If the surrounding environment is too loud and echoing J may (but not always) hit the floor with his hands over his ears.

So – all in all we are watching and waiting to see what the immediate future holds. I’d be lying if I said I wasn’t nervous about this.

A walk in Spring.

Today it is beautiful and a real glimpse of the lovely weather to come (hopefully). I had a day off work, the sun was shining and J was ready for a walk. Accompanied by Nanny we headed off for Dunton Nature Reserve and bought duck food for the lake birds and an ice lolly for J.

The ground was muddy in places and J found plenty of opportunities to sink his feet into soft mud - opportunities which were not wasted!

The blossom was in full bloom and everything was bursting with life and promise of riches to come. The birds were in fine form and the air was filled with melody while the rabbits scuttled around half hidden in the densely wooded areas.

J looked and listened and noticed different things - the stony remains of a house post and trees which had been felled and which provided a home for all manner of creatures.

J was keen to get to the lake most of all though.

J fed the ducks, geese and coots with the bagful of food he had. Once this was empty then he harrassed nanny for the remainder of the bird feed she had.

He found some very hungry birds at the lake and they were pleased to see us. There were one or two punch ups between geese and ducks and a few between warring males and females. In the end though I think all were fed happily and the bags were packed safely away to be swapped for a lolly on their return to the visitors centre.

We continued the walk all around the lake and I enjoyed the chance to breathe in fresh air and watch J as he ran, fell, laughed and cried at various times. We left the lake behind after watching J wobble and nearly lose his balance while standing precariously at the edge of the lake. I asked J if he had tried to fall in the lake on purpose - the answer was an emphatic "No" but then "I just wanted to try and fall in Mummy". Thankfully he failed in that little endeavour.

We headed back to the car  and through more muddy puddles. The visitor's centre gave a J a lolly in return for his empty duck food bags and a second lolly "to put away for tomorrow". Now we are home and the jeans, trainers and T-shirt are in the washing machine. Ben 10 is on the telly and J is lounging on the sofa eating crisps. All in all a good day I reckon.

The Natural History Museum

Yesterday we took J up to London and visited the Natural History Museum.

J really enjoyed the train journey up there and made the most of a window seat.

The weather was lovely and the queue for the museum was  very long much to J's disgust. However, the queue moved quite quickly and we were soon at the front.

J was fascinated by all the dinosaur bones and fossils. We ran from fossil to fossil scarcely taking anything in. J doesn't really "do" concentration but neither do most 7 year olds in such an exciting place. It was very crowded and we had to manage J with severe sensory overload. Generally J found it fun but the constantly bursting balloons were a big problem especially when we went to the restaurant. The first bursting balloon madr J jump, the second one some 30 seconds later led to fingers in ears and the third one about 20 seconds later saw J clambering under thye table for safety.

J really liked this Opthalmosauraus and

we had to take several photographs of him with it.
The Opthalmosauraus is a type of Icthyosaur and there were many fossils in the museum of this
particular creature.

Once J had been totally overloaded with sensory stuff we took him outside for a much wanted ice-cream which he thoroughly enjoyed as you can see. Lacking any wet wipes (always the organized mother me) I did the one thing I always said I would never do - wet a tissue with saliva to clean him off much to his utter revulsion because "now you've put your germs all over me Mummy".

After this we embarked upon a two milish walk across London and through Hyde Park to get to Soho Square and various chain type restaurants for supper before getting the 19.40pm train back to Laindon and the car. J was exhausted by then and fell asleep within half an hour of getting into bed (a record). It was after 9pm but still an improvement upon some of his other evenings. I guess he just needs a good long walk every day.

Letters I would like to write..........

To my new neighbours


The bin store is located at the back of the building just behind the bottom of the stairwell a few yards from where you abandoned your full rubbish bag and the flattened cardboard box. I can see from the full bin bag that putting rubbish in such a receptacle is not an alien concept. Perhaps you would like to take another bin bag and fill it with the coke bottles, bread crusts, ciggie packets, dog ends etc etc which appear to have been abandoned on the stairwell (and on my door mat) since you moved in.

I am giving you a week to settle in by which point I would hope you will have cleaned up after yourselves – if not I will ring the Council.

Oh and welcome to the area.



To Basildon Council

The big H.O.L.L.Y.W.O.O.D sign in the Hollywood hills denotes glitz and glamour. A similar sign in 5 ft letters spelling out the word B.A.S.I.L.D.O.N on a small rise alongside a busy road does not denote the same glitz and makes Basildon look even more ridiculous than it already does on the eyes of the world. Lighting up the letters at night is just unnecessary and screams “chav”.

                                  Why? I mean...... just why?



To Everyone who has said “you must be relieved to have a diagnosis for J”

Thank you for all the support we have had as it was a real shock to hear “ASD and ADHD” (even if not totally unexpected). Yes I am relieved that J has a diagnosis and a label to hang all his little quirks and odd behaviours on, I am relieved that this will be the kick up the bum which the Local Authority needs to provide him with that elusive Statement of SEN which will lay down in a legal document what his educational needs are and how they will be met, I am relieved that J will finally get the support he needs.

But actually....

I am not bloody well relieved; I didn’t want to hear “ASD and ADHD”. I wanted to hear “a bit immature but nothing which won’t correct itself as he gets older”. Not for anything in the world am I relieved to hear that my darling boy has a lifelong disability which will make his life much harder than if he did not have ASD and ADHD. I know there are plenty of people who do well in life and who are on the autistic spectrum – Einstein for example is suspected to have been autistic. But I don’t recall him having an easy life nor any of the other “autistic geniuses” who have been quoted to me since we were told J’s diagnosis.

And finally.....



To Dru

Dora the hamster is a pet, a friend and part of the family. She is not now or ever a plaything, a meal or a source of entertainment. Please could you stop sitting next to or even worse “on top of” the hamster cage. Admittedly Dora does not help matters by being a one hamster escape artist – all I can say is that she must have 9 lives pretty much in the way you have to have survived this long in your company.

D-Day

Finally at age 7 and after 2.5 years of assessments, support in school and varying meltdowns we have been given a diagnosis for J. That diagnosis is Autistic Spectrum Disorder with co-existing ADHD to add to the fun. While getting a diagnosis is a relief and a reason for all J's little quirks it was also a shock. The confirmation of all the suspicions I have had (and hoped were incorrect) was like a punch in the stomach and only 48 hours later do I feel like I have begun to absorb it all.

J is autistic - not high functioning autism or Aspergers as I was suspecting because his social skills are actually not advanced enough to meet the criteria for those - that was the punch in the stomach.
Recently in school there have been several incidents which have culminated in J assaulting other children much to my sadness and disbelief. There was also a dreadful meltdown during the car journey home one evening after I commented to J that he looked tired and shouldn't use the Wii that evening. J raged and kicked and screamed then finally took a shoe off, held it to my face screaming "I hate you - do you want a piece of me"? This is a line from Toy Story, a film not known for it's violence and I was shocked by the raging.

After J was born I suffered severe post-natal depression which made life very hard, I was constantly tired, had no desire for life and caring for J was difficult. Recently I had begun to wonder if J's problems were down to my post-natal depression. There has been various research looking at how PND in mothers impacts upon babies and especially baby boys. This was enough to make me feel desperate and to start a bit of self blame. I had even got as far as making an appointment with my GP to discuss a referral to the children's mental health team. I reasoned that if my PND had impacted upon J negatively then the attachment must be all wrong and that this was my fault. I even attended a lecture about "Disordered Attachment" and listened anxiously to all the signs of good attachment as opposed the disordered attachment. I was relieved to note that J and I ticked all the boxes for good attachment but still felt my depression must be partly to blame.

On Thursday 25th March we attended the appointment at the Social Communication Clinic, to be honest I wasn't sure what to expect. I thought it would be a short appointment with the promise of further assessments and follow ups. In fact the clinic already had the previous assessments done in school by the speech and language therapist (SALT) who specialized in social communication problems. A different specialist SALT was present at the appointment along with a paediatrician and a worker from SNAP (Special Needs And Parents). The SALT took J off to play some games with him - he went willingly and during this time the paediatrician took a long and detailed history form myself and J's Daddy. We talked about everything, all the quirks, the prolonged headbanging as a toddler and small child, the obsession with washing machines as a small child, the problems in school, the hand flapping, J's distractability and attention problems, the rages, the lack of eye contact at times. The paediatrician asked if J had been overly interested in Thomas the Tank Engine - a question I was at loss about until I read about the love autistic children often have for Thomas.
Finally after nearly an hour the paediatrician asked us to wait outside while they discussed the outcome of the assessment and also the observations of the SALT who was still playing with J. It was then that I realised we would actually be getting an answer (possibly) that day.
We waited anxiously - part of me wanted a diagnosis of high functioning autism or Aspergers as it would provide a label to hang all J's problems on, the other part of me did not want that at all - no parent wants to think that their child who is already finding life difficult will continue to do so.
J joined us happily and talked about playing games, he appeared to have enjoyed himself. Finally we were called back in, I left J with his Daddy in the waiting room I wanted to be able to hear without interruption. J was not happy about this so squatting down to talk with him I tried (and failed) to get eye contact. Finally J accepted that he would stay in the waiting room and as I walked down the corridor with the paediatrician she asked me if I had noticed that J had not made eye contact with me but had looked beyond me. I knew then that we would have a label for J's behaviours.
The SALT asked me how I coped as she had spent an hour with J and was exhausted. Then the paediatrician told me that in her opinion J had Autistic Spectrum Disorder and probably also had ADHD although she would need to do more assessments to confirm the ADHD. Apparently ASD rarely exists as a stand alone problem and there are usually co-existing problems. The paediatrician suspects that in J's case this co-existing condition is ADHD.
The worker from SNAP stepped in to say that she was impressed by how we had coped with J and it appears that far from causing J's problems he is all the better for having had good parenting (Mummy will take a little pat on the back and a sigh of relief here). SNAP will be making contact with me over the next week to arrange a visit to their centre. They will support me in applying for DLA, they will support me with behaviour management.
The paediatrician says she wants to see J again in six months and although I am still shell-shocked it feels a relief to have an answer finally. Now the fun begins - the pressure will be applied to the local SEN board for a Statement of SEN and I am going to push them for full-time one to one support in school so that J is always supported and helped.
I am proud of J and I love him so much, despite such difficulties he is on the whole a gregarious and sociable little boy

No Dancing please......

In a move sure to delight his Bapa, J has decided that a future in dancing is not for him and yet it all started off so well a few weeks ago.

Last Monday I received a call from the school, it was the third week of lessons and the school were phoning to say that J did not want to join in the dancing and just wanted to go home. I collected J and asked him about the dancing,

"Why" I asked "don't you want to do the class anymore"? 

J just shrugged and mumbled something about "being too tired".

Further questions and discussions were ignored or answered with short replies  - he was "too tired" it was "silly" and "I don't want to do it any more".

Oh good - so glad I struggled to pay that £20 for the sessions...... not a huge amount I know but by the time I have paid £40 for school dinners and a further £18 in Breakfast club fees for the days I work and the £5 snack money due and the money for anything else they spring on me it doesn't leave much.

A little while later it occured to me that I had forgotten to give J a bottle of water for the class and I had a bit of a lightbulb moment. "J, did you want to come home because you didn't have a bottle of water". J looked at me and nodded. "So if you have a bottle of water you will want to go next week" I asked. J nodded again and so on Monday I made sure he had a bottle of water and arranged that he would be collected at 4pm after the dance class.

At 3.25pm my Mum phoned to say she had just had the school on the phone and "could we go and collect J as he didn't want to do the dancing and was being disruptive". The person added rather unneccessarily "and he didn't want to do it last week either". A shame I didn't get the call because I know he didn't want to do it last week either. I just thought that was because he had no water and this week he does have water and so I wanted to see if that made a difference - evidently it did not.

So - we tried and it's the first after school activity he has done so maybe I was expecting too much but I thought the sensory seeking bit of him would love the dance movement along with the other boys there but it has not been the case.

Now - do I shell out £35 for the football coaching after school on a Thursday which J also wants to attend? Or will that go the same way? Not that I can afford this yet anyway but by the summer term I will have it

J struggles to listen though and it will only take one sharp comment for him to feel silly and not want to go again. He did seem to be enjoying the dancing so I do wonder if someone has said something - a comment or a criticism to make him feel he can't do it. Either that or he takes after his Aunty M who as a child joined everything just long enough to get the uniform and then left!

The First Kiss......

Yesterday morning as I was helping J prepare for school he suddenly blurted out "Mummy, yesterday M kissed me and I don't know why". This was said in a mock aggressive tone as he blushed and looked away before adding "it was disgusting and I'm not going to let her do it again".
I asked J "did she kiss you on the face"? and J replied "she kissed me on the cheek and it was horrible".

J and M have a rather sweet little friendship with J enjoying someone who understands "Ben 10" and who is not adverse to some noisy and energetic playground games. M is a very sweet little girl who obviously likes J and who fought off allcomers for a seat next to J at his 7th birthday party. I have a wonderful photo of them both seated next to each other at the party. M has her arm possessively around J and her head rested on his shoulder with a sweet smile. J in the same photo has his eyes cast downwards with an embarassed grin. Immediately after the photo was taken J made a comedy fall from his chair and lay on the floor which he told me later was him "falling on the floor in love". To protect her identity I won't publish the photo of J and M here but it is lovely and rather sweet. Instead we have two different pictures coutesy of Google Image search.

Yesterday when I collected J from school I asked him if M had kissed him again and the answer was a very boyish "yuck - no way". So that's alright then - I suspect that in just a few more years his answer might be rather different but by then M will be a pretty young thing who will have outgrown Ben 10.  I am not sure the same will be true of J..............