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.

Tags: autism, blindness, charity, children, depression, disability, families, relationships, volunteering