A Day in my Life

Quite often I reach the end of the day feeling as though I have accomplished nothing and it’s not a satisfying feeling. Today has been one of those days and as I ran a bath for J I reflected upon what I had actually done since waking up this morning. If ever you have this feeling of uselessness I can recommend the reflection – it’s quite an eye opener. The timings are a bit approximate but everything listed here happened today.


So

6.40am: Awake and out of bed, drink coffee, plan on tidying up!

7.00am: J awakes and staggers downstairs – how he manages this with an 11pm “falling asleep” time I have not yet got to the bottom of.

7.30am: Prepare breakfast for J – drink second cup of coffee, wash up.

8.30am: J on the loo having not been able to open his bowels for 5 days despite copious amounts of Senna. I sit and rub his tummy, encourage him to rock and blow bubbles to no avail. Dry his tears, reassure him that yes he will go. Run first bath of the day for J as he is overflowing and soiling.

9.00am: Help J out of bath, encourage him to dry himself and put on clean clothes

10.00am: Receive e-mail confirming that S and IW are coming over this evening, housework now more of a pressing issue.

10.30am: J playing game on computer – rages and melts down when laptop overheats (as it does regularly). Calm J down, suggest he watches The Never-ending Story which has just started on TV.

11.15am: In Tescos doing the shop without J as J’s Daddy is in Essex at the moment.

12.00MD: J’s Dad prepares bacon sarnies – lovely

1.00pm: J sat on the loo again sobbing, agrees to suppository which is given, put timer on for 20 mins while J lies on the sofa

1.20pm: J goes back to loo and pushes out suppository but nothing else, more tears and more overflow and soiling. Run J a second bath, put clothes in washing machine and look for washing to add.

1.50pm: J out of the bath, clean clothes found, and encouragement to wash and dry given

2.30pm: Sit on Facebook chatting to a Mumsnet friend in Scotland who is balancing motherhood, work and study (my hat is off to you EP – it isn’t easy).

3.15pm: J rushes to loo and produces! Hooray! Help him to clean himself up and find clean pants, put the second soiled pair in washing machine.

Have bath and wash hair and wonder why there is so little hot water forgetting there have been two baths run already today!

4.00pm: J rushes to loo and produces again! I think this is the definition of a good clear out and much needed! J cleans himself up in a fit on independence but misses some areas!

Put hoover round, wash up again, take rubbish out to back gate, wipe kitchen surfaces and return to living room to find J has brought the hamster downstairs and is sitting with her on the sofa. The cat watches with ill disguised interest. Encourage J to put Bramble (hamster) in her ball so she is safe from hunting eyes, ears and claws.

4.45pm: Take hamster safely back to her cage and shut her in. Evict cat from inside the hamster cage where she has gone to explore.

5.00pm: Slobbing on sofa drinking juice.

6.00pm: Clean cat litter tray - take bag of soiled litter out and replace with sparkling clean litter (cannot wait for summer when hopefully cat will use the garden).

6.30pm: Notice J has very – ahem – unclean pants on – run him the third bath of the day (hope this is the final one).

J protests about a third bath – explain in simple terms that he has had the clearout to end all clearouts so needs to be clean otherwise will get sore. J agrees to bath.

7.00pm: Sit and write blog while J splashes in bath. Prospect of wine and curry looms – just hope am not going to be too tired to enjoy all!

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......