Raising Ross…pt1?

Good morning.

It’s a little after six thirty on a saturday morning, and I’m writing this somewhat difficult entry whilst still sitting in bed. I must confess that I now write my entries as “word” documents, and then copy/paste them into the blog afterwards, in case of mishap etc, and I strongly suspect that since this will be a long entry, it will take me more than one attempt to finish it.

It seems ironic, indeed almost scary, that I should be writing about ross on his birthday. Ross is 15 today and, as you will know by the title of this entry, this is about Ross, how/when he was born, his life, the diagnosis of his disability, and the multiple difficulties I faced raising him, taking into account my own disabilities, and the complexities of us having “two out of five” senses, effectively, missing between us.

Ross is an angelic teenager now…at least, for the most part. He has his faults, he shouts if the dog barks: he hates people singing, which is a nucence, because I’m an avid music lover: he loves stupid cartoon type programmes on tv, and watches the same twaddle incessently over and over again: he is obsessed with routine, but that’s the nature of the beast, I’m afraid: he is very inclined to “dawdle”, and often needs to be chivvied along a bit: but taking into account how he used to be…how he could well have been…my god, I have really gotten nothing to complain about.

Ross John David was born on 21 November 1994 – he was a planned baby. Like Freddie before him, he was born by elective caesarian section, because of my epilepsy.

When I was pregnant, I was desperate to know the sex of the baby, having had two boys, I wanted a daughter more than anything, but the hospital wouldn’t tell me? they said that their policy was not to tell expectant mothers because, according to their rules and, I guess, some element of experience, some ethnic families favour one sex child over the other, and would opt for a termination of pregnancy if the baby wasn’t what they wanted? I can’t comment on that, I have no wish to, I am a christian, although don’t discuss my religion with anyone unless they ask, and as desperate as I was for a daughter, I would never have terminated Ross if I had had definite confirmation of his being male. However, having carried two babies previously, there were things I had sorta learned? It’s said that a fetal heartbeat of a baby girl is normally on the faster end of the “average” rating, and a baby boy’s on the slower . . . ross’s was always slower.

I knew Ross was a boy. there was no denying it, no lying, not even to myself. When he was born, I just didn’t feel the passion…it just wasn’t there. I can’t explain, it’s horrible thinking back about it, it’s horrible writing about it, it’s not something I’m enjoying doing, but in order to get to the level of fantastic relationship we have now and how we got there, I hafta do this? the whole point of blogging about my past, my family’s past, is not only to share with you, but to relieve myself also…does that make sense?

Sorry, I’m rambling, and that’s not professional of me. I’m no professional writer, but I do have a way with words, I have often written diaries, and I know I can produce better “ramblings” than this. Still, I guess that since I’m not professional, the honest blog comes from the heart…right?

Anyhow, I digress. The passion just wasn’t there. Looking backwards to Freddie’s caesarian birth, it was a magical experience, if an operation can be magical…but Ross’s was . . . different? Granted, even the op itself wasn’t without complications, Freddie’s “cut” was straight, Ross’s wasn’t, it was sorta “smile” shaped, and anyone who’s had a c-section may understand that the upturned edges of such a scar don’t heal well…and mine were no exception.

Ross was born with what’s basically called “floppy muscle syndrome”, there is a more complex term for it, but I confess I can’t remember for sure. Something tells me it’s called “hypertonia”, but without referring to the internet for help, I can’t be 100 percent certain. If that makes me a crap mom for my lack of memory, then may god strike me off the register right here! I think, to be honest, that because the problem’s rectified itself, whereas others haven’t, it’s all just sorta passed me by? Anyway, right from the beginning the poor little man suffered. He had no sucking capacity, despite being a good weight, (just an ounce under 9 pounds, even though he was two weeks prem). The hospital tried every which way to get him to feed, but it just wasn’t gonna happen. They wanted me to breast feed, but because my enthusiasm wasn’t there, I wouldn’t support the decision…looking back, I don’t honestly think it’d have made much difference.

Ross was fitted with an “ng tube”, (nasal gastric) which basically does what it says on the tin. Milk is fed directly into the baby’s stomach via the tube, because he wouldn’t take it any other way. I was in hospital for 5 days, and Ross for a further week. When he came home, it was because I pushed for it…he had the ng tube removed, and the hospital were happy that he was taking enough milk, at a struggle, to come home. I think, with hindsight, that they’d rather have kept him in longer, and if I’d been more mature about it, it might have saved a lot of problems later, for both myself, and for Ross. But I was stubborn, and only concerned about trying to develop a relationship with this male child who, let’s face it, wasn’t going anywhere, he was mine, he was here to stay, he was a boy, and there was basically sweet f*** all I could do about it.

Some time in the early part of December that year, I can’t recall exact dates, Ross started getting some sort of cold…it happens, they all get them, and babies develop illness easily, and in most cases recover just as quickly. But Ross was the exception rather than the rule. Indeed, his relaxed muscles meant that he would often sleep longer than he should, he didn’t have the energy to wake up for feeds, he lost a lot of weight, and if he cried for milk and for any reason was not attended to in time, he would go back to sleep . . . that’s not normal is it? Indeed, I recall vividly one particular morning when I’d had to visit the benefit office close to where I was living at the time. We’d gotten stuck, waiting to be seen, and I just couldn’t attend to his needs . . . he screamed for 5-6 minutes…then stopped, and went back to sleep again. I had to wake him at home for a bottle.

I’m sorry, I digress, again! Thumbs down, miss Macaulay! After several visits to, and from the gp, Ross was sent to the local a and e by the doctor. He was admitted, and diagnosed with pneumonia. The experience was terrifying, not least because I remember asking a consultant in casualty “is my son gonna die”, and he said…and I quote…”it depends how we help him get better. In other words, he would not confirm either way, that Ross would live, or die.

That night in the hospital intensive care, when ross was “partially” ventilated, hooked upto some machinery, but not all, he suffered a brief cardiac arrest, and I was ejected from the room we were in, while they resussitated my baby son. the memory of those moments will remain with me forever..he was ok, of course, he was then fully ventilated, and I was allowed back in to spend the night by his side.

He spent a week in intensive care, and a further week on the ward. After that, he was in and out of hospital with chest infection after chest infection for the first 2-3 years of his life. He was diagnosed with asthma, and had frequent trips to hospital to go on a nebuliser, etc etc. His “floppy muscle” problem continued, and caused all sorts of “global” delay…he did not sit up until he was a year, and did not walk til he was 2.

Ross did not start to speak either. I cannot recall, (though a mother should, I guess, but in my defence there was so much going on), whether Ross ever really “babbled”? People ask me that often, especially in light of the argument about whether autism may or may not be caused by the 3-in-1 “mmr” vaxxination that babies get just after their first birthday, an argument I have mixed opinions about, and which I’m not about to open on this blog. Myself I think he did, but only minimally. At the time, of course, I had two other toddlers to care for, by the time Ross was sitting up at a year, neither Freddie nor Sam were yet in school, my work load was tough! I was in regular contact with my ex, but the relationship was fraught with it’s problems, we squabbled constantly, often in front of the children.

When he was about two years, Ross underwent tests regarding his hearing. There were concerns that he may be profoundly deaf, a concept I personally found alarming at the time and, with hindsight, although it would almost certainly not have lead to the behavioural difficulties I experienced from Ross, a double whammy of sensory loss between us . . . my god, how tough that would have made my life? How would a blind mom have coped with that? Maybes he’d have hadta learn the deaf-blind manual, in order to communicate with me?

(nb, for anyone who doesn’t know, the deaf-blind manual is communicated by touch, using one’s fingers on the hands/fingers of the deaf person to spell out words. I can tell you more if you want to know…just ask, any time.)

Anyhow, it wasn’t the problem. Intensive testing on ross, by putting him to sleep and attaching electrobes to his head, measuring responses from his brain to different levels of audio input, concluded that Ross suffered from “glue ear”, a common problem, corrected by the insertion of small “gromits”, which rectified the problem over the course of the next 2-3 years.

Once the gromits had been inserted, it became immediately obvious that ross could hear. He would jump at sounds like the phone ringing, or the doorbell, or music, which he had clearly not heard before. It was also suggested that perhaps his lack of hearing had lead to fear of his surroundings, and that perhaps he would become more mobile now that he could hear…and he did…with a vengance!!! But the speech did not come.

The speech did not come, and the behaviour was getting worse. A lot of the memories around that time are quite blurred, and I hafta say I’m struggling somewhat remembering everything I want to write in this blog, so I know it will get edited, and re-edited, as more and more things come back to my mind. But he was a bugger to care for, even at that age. It was affecting his brothers’ behaviour also, mom was having to give more care and attention to lil brother than to them: mom suffered with enough health problems of her own, (my epilepsy was getting worse by this stage, I think, we all think, it was the day-to-day stress of raising kids): my eldest, Sam, who was in school by this time, was always the clever one, and had learned many ways of taking advantage of mom…indeed, he’d admit that to anyone…he did it all his young life, but we too have a fantastic relationship now.

In April 1997, when ross was 2 and a half years old, he was visiting a paediatrician at Ealing hospital, in West London, near our home. After several visits, ross was diagnosed with autism. It was no real surprise to either myself, my family, or my closest friends, and indeed, just to have a name for the behaviour patterns was in itself some sort of relief, but nevertheless it tore me apart. I had a disabled child: the disability, however mild or severe it turned out to be, would never, ever go away, it was there for life: he would need specialist education: social services intervention: he might not talk: I mightn’t be able to cope with him: what about his brothers..how tough on them: why did it hafta be me…I already had two disabilities of my own…why couldn’t someone else have had him: all these thoughts flooded my mind, night and day, day and night…for what seemed like an eternity, and on the “down days”, some of them trouble me still.

Suddenly though, it seemed that there was a mass of “help” available to Ross? Help which, whether he had autism or not, wouldn’t necessarily have made his life, or mine, any easier? At the time, I had Sam in school, and Freddie and Ross in a local council run nursery. Ross was transferred to the “special needs” room, and suddenly, he was being given transport to nursery every day. All well and good, but until then, we hadta take two kids in, and one to school anyway. After that, we still hadta take one into nursery, the minibus wouldn’t take Freddie in for me, not even if there was a seat available. Now, explain to me the logic in that? It seemed to me at the time, and indeed, I still believe, there is a “gap” in the system, for disabled parents, struggling with their kids, whether their kids are disabled or main stream. It seems that if the kiddy has a disability, everyone, everywhere, will move mountains. Not that I’m ungrateful, don’t ever think that, reading this blog, because I’m not, but when it’s the parent with the disability, the provisions are far fewer.

Ross was also offered the chance to attend “pests”, an acrinim, for “parents of ealing selfhelp training scheme”. It was a registered charity, a specialist “parent/toddler” group, for parents whose babies/children had disabilities, right across the board, from the most moderate learning disabilities, to the most profound types of illness/physical impairment, indeed, several children I knew from pests are sadly no longer with us.

Ross and I started attending pests almost immediately after he was diagnosed. We were referred by the borough’s “special needs” health visitor, and at the time I think I was just so greatful for somewhere I could go and share my frustrations, my concerns, my problems, with people who not only understood me, but in many cases had either experienced the same difficulties, or were actually suffering them for themselves. At the time Ross was still doubly incontinent, and indeed, wwas so for many years, we had moved to Wales before he was fully out of pads during the night. He was also experiencing terrible bowel problems, apparently very common in people with autism, and almost every morning his badly soiled pad would be taken off, and it’s contents “smeared” all over his room . . . his bed, the floor, the door, the walls . . . I don’t need to tell you how tough that was for a visually impaired mom to deal with, often unsupported?

The time I spent at pests, as a mom in need, stood me in good stead for helping others later in life, both as a committee member/officer for pests, once Ross had started school, and more recently as a volunteer worker at our local hospital. I chaired pests for 3 years prior to moving to wales, the priviledge meant a lot to me, I enjoyed what I did, and “disability empowerment” was also good for pests, the fact that a parent with special needs was trusted to chair an established charity.

I also continued visiting the weekly play sessions long after ross started school, because my own struggles, my own experiences, proved helpful to other parents coping with the new diagnosis of a child with disability and indeed, my double-trouble story, being disabled myself also, encouraged and inspired many, and if I may say so, still does today. I remember feeling always that pests had done so much for me in Ross’s early years, so if I could help another family, it was both my duty, and my joy.

And that posative note is where I will stop, for today. The story of “raising Ross” gets worse, before it gets better, and on his birthday I don’t want to be going into some of the deepest, most distressing stages of my life, it’s not fair on me. I will warn anyone reading this blog entry though that the next one will be a distressing read, so unless you’re willing to witness a mother’s heart-felt honesty, some of which has brought people to tears in the past when it’s been told to them, you might like to give it a miss.

So for now then, it’s “ta ta” from me, and happy birthday Rossie, who has just finished building a gingerbread house with the supervision of his brother Freddie and girlfriend Janet, and they’re part-way through baking a birthday cake together.

Love always, Jennie.

Miss Macaulay’s closing lines:

“all I need to know for tomorrow is that you’re mine, mine for a lifetime…” Lyrics from “you’re the one”, by the Carpenters.

just another day…

Ok, so it’s Thursday, it’s just a little after 20 past 11, and it’s windy outside, but warm and comfortable indoors. I say warm because, although I’m usually something of a tight-arse when it comes to the heating, only using it for the customary morning-and-evening stints, to give a burst when it’s most needed, I hafta say that in my old age I’ve become somewhat more whimpish, and have a tendancy to give into it’s temptations more often! Needless to say I’ve given in today, and so the house is unnecessarily warm…I could have put on a jumper!

So, to get back on track. I thought I’d defer somewhat today from the path I’ve been following, progression through my life and that of my children, and chat a little about my current situation.

From reading the basic profile on my account (which I will probably hafta work on a little more), visitors to this blog may already know I am v.i, that I am a volunteer hospital radio worker, (I present my own show, although I’m off-air at the moment due to other administrative commitments to the station), of which I am also the chairman. I’m a single mum, I have 3 teenage sons, 18, 17, and my youngest, Ross, is 15 this weekend, and as yet doesn’t have a birthday present! Oopse missus, time running out methinks? the afore mentioned son, ross, is profoundly autistic, and has very limited language, although he’s intelligent enough, but nevertheless difficult to choose presents for? There will be more and more references to Ross, my voluntary work, the radio station and it’s antics, as this blog continues.

At the moment I’m spending a lot of my time working/playing on the internet. I have two bebo accounts, strange though that may seem for a woman of my age, my children got me into bebo in late 2007, because it was the easiest of the social networking sites for me to negotiate, given the speech system I use on the computer, (appropriately called JAWS, but not because it talks lol). I quickly made friends online with people my kids knew, and also with strangers, I personally believe that’s what the internet’s for. I don’t use bebo so much now, although I kept the accounts up because I run two vegan/vegetarian groups on there, both of which are still fairly well supported, and also an anti-internet bullying group, set up on the back of personal, and very painful experiences I had online…more on that another day. I co-moderate several other groups too, but I will put a blog entry together with all the links on at a later date.

I discovered facebook much later, basically because the kids were never off it…but I struggled with it? I think, to be honest, it was because the two social networks are so very, very different, but it took me a long time to get used to it, and several attempts before I finally agreed to give it my full attention. I’m much better now, although it hasta be said that a lot of the “applications” and games appear not to be “JAWS” friendly, and I sometimes get “chucked off” the net when I try to access stuff, and so need sighted help, which is a bit of a bugger! My facebook and bebo profiles are all private, they have to be, on account of what happened to me, but I do have some fantastic friends on there . . . life long friendships are, or at least can be, formed online, it’s just so very very sad that people abuse this wonderful tool, and use it as a powerful weapon? Food for thought, perhaps?

My latest internet “toy” and indeed, something I’m really getting a lot out of, is twitter. I don’t mind admitting publicly (since this blog is a public website, I took the brave decision not to go private with this one), that I hooked up with twitter to follow my celebrity idol Russell Simmons, whose twitter profile gives me much comfort, his “tweets” are often very inspiring. I am enjoying posting on it myself, and because it’s not somewhere you create a massive profile about yourself, you only get the chance to write a “one-line bio”, I actually feel quite safe using it? It’s difficult to explain, when one has been bullied as I have…there’s a need to feel secure?

I am also spending a lot of time at the station’s office. Indeed, both my twitter and facebook pages would tell you that…all I seem to do is bang on about how much time I spend at the office, or whether the “mobile broadband” is working or not! (the hospital seems to be a bit of a dodgy “hotspot” for the server I’m using, I think I may well have to change? Only yesterday I was up there with a fellow volunteer, and it took me best part of a dozen attempts to get the damned thing to log in!!! Such a time waster!!!

At the moment, the station’s management team is preparing for a christmas meal we have booked in mid December, I cannot believe christmas is approaching so fast, and I’m nowhere near ready for it? We are also considering ways of making money for the station, the “pot” is emptying, and we will be needing a couple of thousand by the middle of 20-10, if we’re to stay afloat.

so today…After saving and tagging this blog, and hopefully it’ll all be ok…in the time that remains before the kids get home again, I’ve a couple of phonecalls to make, some laundry to sort, a shopping list to write, and well…a lady of leasure today!

Tomorrow (unless it’s done either in the early hours or late in the evening) I won’t be blogging, because Hetty, my p.a, is working, and we have shopping to do, a brief drop by the office, (and I hafta say brief because Hetty always finds some reason to stay up there and do work, she’s worse than me), and after that we’re playing facebook and twitter, I want some help to “jazz up” my twitter profile a bit so it looks better. Then I promise I will post the links for you, so you can see!!!

So for now, take care, be good, don’t do anything you will regret when you wake up in the morning!

Love always

Jennie

Miss Macaulay’s closing lines:

“practice devotional activities like chanting, prayer or meditation . . . to still the mind.”

Russell (Rush) Simmons)

http://www.twitter.com/uncleRUSH

YummyMummy

Ok, so it’s Monday, and the teenies are off school, teacher training day, would you credit it? I wouldn’t mind, but they were off Friday too…don’t they take enough time out, the teachers that is? I mean, it’d be bad enough if they tagged their daily training sessions onto either end of the school vacation, but to dump a 4-day weekend onto us, in the run-up to christmas? Huh!

Anyway, that’s my rant over with for this entry, that’s not why I’m writing to you, but as my 17-year-old brings me a cup of coffee with soya milk, (not without my asking mind), and I am feeling rather under the weather as the result of more unexpected ceasures this morning, I thought I’d take the time to chill out a little, and tell you some mmore about my life’s history, the next “chapter”, if you like?

Yesterday I think I’d gotten to the point whereby I had been working for a high street bank in central London, I think I can say without fear of being sued for lible that I worked for what used to be called Midland bank, in Covent Garden, and then in Holborn Circus. I loved it, but with hindsight, I was probably the worst employee they had ever had? I was always on the sick, granted my medical condition didn’t help, but I did make friends there, and don’t mind admitting that I thought my line manager in the holborn circus branch was really rather yummy, although looking back now I don’t know why? Isn’t it strange how we are attracted to people of the opposite sex when we’re younger, and then look back when we’re older and think “why”? Nevertheless, my eldest, Sam, carries his name as one of his middle names…more on that later.

Anyway, I digress, I’m supposed to be telling you about my relationship(S, and being a mom, with a disability on board.

I was never the promiscuous type of woman, and taking into account the fact that I went to an all-girls boarding school, where we wer brought up with the strictest attitude…if you walked into a room with someone of the opposite sex you became pregnant or caught an std, and if you had just one alcaholic drink you got liver failure, I really didn’t do too badly. I had several boyfriends before I hooked up with my kids’ daddy, and I don’t mind admitting openly that when I moved to London to study office skills in September 1986, it didn’t take me long to find a man…I won’t name him, because he’s no longer with us, R.I.P, but with hindsight it was destined to failure. He was old enough to be my dad, and his reputation preceeded him, but he showed me male attention, and of course, being 17 and curious…I loved it!

I met my kids’ dad, who I will name..Michael, in 1988. I was living in a large edwardian house in west London, which was converted into studio flats and owned by a small housing association for blind/parcially sighted people. I had a flat on the ground floor, and Michael was staying with his twin brother, who sadly is no longer with us, in a flat upstairs. I remember well the day we met…I needed a lightbulb changing and, not being able to reach, I ventured upstairs to the twins’ flat for help, Michael came down to see me…and the friendship developed from there.

Our friendship turned into a relationship, as it often does, although when I met Michael I was seeing someone else at the time. I cannot recall how the previous relationship ended, but it must have been amicably, because my memories of, and genuine feelings for the man in question are nothing but loving and kind…I always say I truly believe he was the only man I was ever in love with . . . his name was David.

Michael’s twin brother passed away on 2nd October 1990. It was totally unexpected, and a shock to us all. He was working, at the time, as a temp at an old folk’s care home, and was on his way back to the flat he lived in, above me. We were awoken by the intercom, but never knew until the next morning that John had been killed in an RTA…he didn’t suffer. Michael and his family were distraught, Michael’s parents visited immediately, and spent some considerable time at their son’s apartment before returning to their home. Michael was staying with me at the time, and it was shortly after that, I became pregnant with my eldest, Sam.

Lots of things happened that year, we also lost a neighbour, who lived upstairs from me…I actually ended up living in their flat with Sam, because it was the only proper one-bed apartment in the building, even though there were a mass of stairs to climb, and I later regretted the decision to take it. My grandma, (nanny) also passed away just as I discovered I was expecting, and to this day we all believe she died to make space in the world for Sam. She’d have been so proud of me, so proud of her first-born granddaughter, how I coped in the face of advercity, how I managed despite my disability, etc etc, but sadly it was not to be.

I enjoyed a fairly trouble free pregnancy, although my epilepsy meant that I hadta have what they call “full care”, meaning all my appointments were in the hospital, rather than some at home, or with my local gp, and I was under a specialist type of doctor, etc etc. I suffered a difficult labour, and had multiple, unconscious, absence style ceasures throughout, to the extent that Sam’s life and mine were at risk by the time he was born, and I cannot remember his birth.

My relationship with Michael suffered extensively during my pregnancy. I know for sure he wouldn’t mind me writing about this, since he’s undergone councelling etc for it all since then, and many of the issues are behind us, although not all. I was a victim of some domestic violence, but I’m not willing to discuss that much further, it’s not fair to other parties involved. At the end of my pregnancy, I guess I was about 34 weeks, I was forced to ask Michael to leave…the reason why is a strict secret between those closest to me, even my children aren’t privy to that one. However, it meant he wasn’t with me when Sam was born, and I contacted him in secret afterwards, without the knowledge of my extended family, for fear of reprisals. It took some time for them to accept him again.

Sam Malcolm Russell was born on 9 October 1991. He was the picture of health, he was a physical fighter from the start, he was chubby, and weighed in at a massive 9 pounds 11 ounces. He was a guzzler, with a shock of beautiful ginger hair, which he retains to this day. From the outset Sam slept well, and taking all things into account, was a “good” baby.

My children all have 3 christian names – Sam was named after a current member of some pop band I liked at the time, (Sam), my line manager at the bank, (Malcolm), and my iconic hero, as is still to this day, (Russell).

Freddie Phillip Hamish was born 1 year and 3 days after his brother…needless to say the close gap between them means that Freddie was most certainly not planned, and he is aware of that, although it’s never, ever been held against him. Freddie was born by caesarian section and, because I missed out on Sam’s birth, as such, to me it seemed as though Freddie’s birth was the first one…it was somehow the most special? The implications of this have meant that Freddie and I have retained a special kind of relationship throughout his life…not that he’s a favourite, I don’t have those, but there’s something special there, that’s so difficult to explain.  Freddie weighed in at 8 and a half pounds, and was all chub and blubber! Honestly he was…he has to’ve been the squeeziest, squishiest baby/toddler I’ve ever had the pleasure of knowing/hugging.  Needless to say it’s all turned to muscle now, but he remains of a larger build, which does suit him, unlike both his brothers, who are incredibly slim.

 

Freddie was named after Freddie Mercury, who passed away just 6 weeks after Sam’s birth, Phillip was the name of one of the consultants who helped to deliver him, (when I was nervous about the c-section, the afore mentioned Phil Bennett was especially jovial and comforting to me), and Hamish is a teenage secret I cannot share in this diary, sorry about that!!!

When Sam was born, my deepest fear was that the social services would declare me unfit to care for him because I couldn’t see, but I couldn’t have been more wrong? Sure, I was visited, almost as soon as Sam and I came home from hospital, but it was to see if I needed anything, not to see how I’d cope? I was really quite touched by the support I received, and, if I say it myself, I coped very well. I had some post natal depression, I remember feeling as though Sam was this “sighted alien” in my life…I struggled with the fact that this “sighted alien” could see everything I did, was aware of everything I did…I felt like I was being invaded, my space was being taken over? From the outside, it’s impossible for people to understand, I’ve had this conversation over and over with people, and noone seems to get it, but to me it was a very, very real concern. I hafta say it didn’t last for long, by the time I had fallen pregnant with Freddie, I had forgotten all about my concerns.

I’d say the biggest practical problem I had with caring for a baby was trying to spoon feed? OMG the memories!!!! lol!!!! I was always lucky if 20 percent of the food ended up in the right place…I recall always having to prepare more food than I wanted the child to eat, because I knew full well that most of it was gonna end up on their face, in their hair, on the floor, on the high-chair tray, anywhere but in their mouth! I hafta say that bringing up bubbas is nowhere near as difficult for blind people as one might think, and many people I know experienced far less problems than I did, so I don’t credit myself that highly, although I confess right here…that Ross was another, very, very different story.

Ok, that’s enough for now.

If you’re fascinated by this entry, or even remotely interested, and you’d like to read more about how I’ve gotten along with the complexities of two disabilities of my own, plus raising a child with profound autism…then continue reading this blog.

Love always, Jennie.

Miss Macaulay’s closing lines:

“Thankyou beautiful people, goodnight, god bless, you’ve been a tremendous audience . . . see you soon!!!”

(The late freddie Mercury, R.I.P, it’s from a live show.)

 

A little background?

Well hi again. 

It’s almost 2 pm on Sunday, and the Macaulay Mansion, as we affectionately refer to my home on the internet, is currently peaceful, save the rattlings of Rossie watching dreadful Spongebob Squarepants on tv..my god I so hate that programme, but the nature of his disability means he is inclined to watch the same stuff over and over, despite his teenage years, and apparent high levels of intelligence?

 

So, I thought that since, to my surprise, the first blog post saved ok, even though I can’t yet master how to sort out the categories, or the tagging system, I’d write to you again, and give you a little background to myself, my family and my life.

 

I’m Jennie, and I’m 40 years, but then, if you’ve red anything about my account you’d know that already?  I’ve been blind all my life, I have a condition called “leibers amorosis”, Leibers being the name of the guy who discovered it, and Amorosis basically being some latin word related to blindness, the true origin of which I have never bothered myself with looking into!  My blindness is hireditory, and is a “recessive” gene, that means both parents must be carriers for the disability to be passed on.  We managed to trace blineness on my father’s side of the family, but never connected it on my mothers.  I have no other living relatives with the condition. 

 

I also have mild, but somewhat uncontrolled epilepsy, “absence” style ceasures, which have plagued my life on and off since I was about 11, (although we think, with hindsight, that it was always there, but didn’t manifest itself until I hit puberty).  the condition is nothing but a nuicence to me, and I’m sure there will be many more references to it throughout this entire diary/blog, however long it may last.

 

I was born in the east end of London, in what would have been the “bow bells” area, although of course they haven’t sounded since long before I was born.  I grew up in leafy buckinghamshire, spending most of nmy early childhood in a large bungalow, not dissimilar in size to the one I live in now, which was tied accommodation to my father’s job…my dad was a fully qualified butcher and, to his credit, was never out of work, all my life.  Very strange that as a mature adult, I should end up being not only vegetarian, but strict vegan, when my dad brought home the best cuts of meat weekly, for our sunday roast!!! Almost laughable really!

 

When I was 10, I was sent away to boarding school, in Hertfordshire.  It broke me, at the time, I had never been away from home, only to my grandma, and I was a naive child, somewhat mollycoddled, my mother did everything for me, (I’m not sure if it’s because she wanted to spoil me, or because she thought it’d be easier if she just “did it”, maybe she thought her v.i daughter couldn’t take care of herself)? either way, it stood me in bad stead for boarding school, but I was used to it within the year, and the time I spent there, from september 1979 to July 1986 were some of the happiest years of my life.  Indeed, when I’ve filled in survey type things on my bebo and facebook pages, and they ask if you could turn back time what would you do again…yada yada, that sort of question, I almost always say I’d relive the final year of my school days.  I recall my best friend, the hip hop music we shared, much of which I still regularly enjoy, the teenage, girlie fantasies we discussed, the musical legends who inspired us, (nb, I have two heroes, both of whom have been big in my life since I was a teenager, Freddie Mercury, R.I.P, and New York born, hip hop entrepreneur Russell (Rush) Simmons), and the fantastic concert at Wembley we went to together just before I left school, a multi-artist hip hop gig, called “UK fresh”.  It was a two-part show, but we only went to one half.  I remember how my bestie’s geography teacher went with us, and at the time I never thought about how good it was of her to accompany two squeaking young teenagers to something she clearly had no interest in?  Looking back now, she was an absolute saint!!!

 

I moved to London to study after school, and never returned.  I worked for a high street bank for a while, before having my first child . . . and that’s where I will stop for now.

 

If you wanna read about my children, how I coped with the joys of parenthood, an abusive relationship, raising 3 small babies without sight, coupled with the frightening blow of learning that my youngest would never talk…or would he…read the next step in this “inside story”.

 

Love always…Jennie.

Miss Macaulay’s closing message: “Of all the things you can wear today, your expression is the most important”. (from Rev. Run.)

good morning, and a first bash at blogging!

Good morning.  1121 a.m on a bright crisp morning in Aberystwyth, west wales, as I sit at my computer in my bungalow.  the place is quiet, save for my 17-year-old son’s girlfriend giggling in the kitchen, I suspect they are playing a tickling or chasing game…young love eh?  OMG it seems so long since I was that age, that’s probably because it is!!

 

Ok, to begin today.  You will hafta forgive me if I mess this up more than once…I have always wanted to compose a weblog, keep a diary that people can see, that people can read, but just never gotten round to it?  Something I read on someone’s “tweet”, that I was following on twitter recently, made me decide to get on and do it, so here I am.  Like I say, you’ll hafta forgive me if I mess this up a bit, I am v.i, and some things work well with our speech systems, some don’t!  I suspect this will be ok, but like anything new, it will take some getting used to. 

 

The purpose of this blog is to keep in touch with the world, and to tell the story of how I’ve grown up with two disabilities, raised a family, including one son with autism, and how we now cope from day-to-day, the things we do, (and/or don’t), the things we find difficult, just ordinary, day-to-day challenges, that the alien, sighted world takes for granted.

 

Ok, well before I go on much further, I guess I’d better stop, and see if this is in the right place, and whether I can publish the page successfully!  Catch up with y’all later.  Much love, Jennie. xxx