Friday, 20 February 2009
James meanwhile is a LONG way off being out of nappies - he has no awareness of what's going on, no desire to not be in nappies (which I think is going to be key, once he has decided he no longer wants to wear nappies then I think we might be on to a winner), he can't communicate his need to go to the toilet, he can't communicate that he is wet/soiled and he probably hasn't appreciated that if he DID communicate his needs to us we could do something about it. Unfortunately, he has some awareness - he doesn't like having a dirty nappy on and rather than complain or moan, he sticks his hands in his nappy. I used to hear about children who would smear, and it just made my heart ache for their poor parents. Imagine living a life controlled by your child's bowel habits - fearing going out in public in case they have an "incident", living in a house that is constantly smeared, cleaning up the mess several times a day. No overnight stays with friends, no spur of the moment trips to the zoo, no chance of holidaying in a hotel. I never dreamt that I would be stuck in the same situation, praying that James would poo when we were around so we'd be able to do something about it immediately. It feels as though we are constantly on red alert - when we go out, we have to have an emergency pack, with wipes, nappies, change of clothes, antibacterial wipes and antibacterial hand foam. It's like a military operation, making sure we are fully prepared for every eventuality. Luckily, preparation seems to be sufficient - as long as we're prepared, disaster doesn't strike. Usually, disaster occurs when we're preoccupied, unable to give James our full attention. So on Friday afternoon, while I'm preparing dinner, we had one of our "incidents" - the children had been having fun in an enormous cardboard box that had contained some goodies from GLTC. I was in the kitchen, when I heard a cry of "No! James, that's POO!"from Bea. Sure enough, I run through to the playroom to find James crouching in the box, hands covered. At least she warned me this time!
The other night we had a rather unfortunate incident in the bath - I had decided to be reckless and bath the children on my own, but neither of them wanted to co-operate. I ended up putting James in the bath and going to Bea in her room. I had just undressed her when I noticed it was rather quiet in the bathroom (a bit of a tell tale sign that James is concentrating on performing....) and sure enough there was a rather loud splash! Mayhem broke loose, and some of the shouting that occurred would probably have caused most neighbours to call social services. Actually, I'm amazed how little shouting actually occurred - especially as Bea was freezing cold, James was sick from laughing whilst sitting on the toilet and I was covered in poo...
So toilet woes continue to rule my life for now. Maybe Bea will give up and toilet train herself in summer if I don't bother to try anything else....
Wednesday, 18 February 2009
When Bea was born I was still blissfully unaware of James' problems. We put her in cloth nappies at birth - much to the midwives' amazement, many of whom had never seen a cloth nappy! I found the washing just about manageable, and bolstered myself with the thought that we would toilet train James over the summer, so it was only a temporary thing. Little did I know that nearly 3 years later I would still be changing two sets of nappies. We continued using cloth at home with James until was 4 and a half, when I finally got hold of the continence advice service and we were given free nappies from the council. I thought I would finally get one child toilet trained last August, when Bea announced that she wanted to wear knickers and hated cloth nappies, but sadly this has not been the case. We had a good go, but with the upheaval of James not being in any form of placement in September, and then starting nursery and with our childminder, it wasn't really good timing. And every time we've tried again since, she has shown little interest in actually communicating her need to go to the toilet (apart from when sitting in the trolley in the supermarket, when she will even now insist at the top of her voice that "I need to go to the toilet" even when she's wearing a nappy!). I am sure that if I didn't have James' extra needs to juggle, I would have been able to knuckle down and tackle this. But my life is too complex, there are too many conflicting needs, and I can't do it without compromising something else. So once again, I feel I'm damned if I do, damned if I don't.
Siblings of children with special needs do get a different life experience - I'm not sure that they ever wish their life could be different, but I'm sure that at some point we'll have to deal with Bea's awareness tha James' difficulties mean sacrifices and different expectations for all of us. For instance, I cannot imagine us visiting friends overnight for a party, nor going on a joint holiday with another family. Once Bea starts school, it is going to be difficult for her to attend any after school activities unless James is in some sort of respite facility as I will need to be home when he is dropped off and we would struggle to walk to school and back with him. I have taken James to swimming lessons since he was 4 months, and we still go weekly - Bea has been swimming about 4 times in her life. Most of my friends with children with similar gaps are able to take them both to their lessons - I'm going to have to wait until Bea is competent at dressing and undressing herself as James still needs complete supervision to change. Sometimes when we're walking a short distance I find myself holding James' hand (tightly) and asking Bea to hold his other hand - it looks very sweet, this "older sibling leading younger sibling" tableau, but first appearances can be deceiving.....
Maybe there should be a book for siblings with special needs, one they are instructed on in utero. It would read something like this:
- Don't give your parents cause for concern, ever, especially not by displaying similar signs to your affected sibling (the more I look at Bea, the more obvious her "autistic" traits are - not that I think she is autistic, far from it, but more than some typically autistic features in James are a strong and positive presence in Bea's character and personality, for instance her strong will, her persistence, her enjoyment of thrills such as spinning around and swinging high)
- Toilet train as soon as possible, preferably without any involvement from your parents
- Develop a sense of danger (and safety) early on in your life - or at least, don't end up dragged to A&E for x rays and plaster casts three times in the space fo 6 months at the age of 2.....
- Be a listener - as a child, this means listening to your parents and (preferably!) doing as you're told. As an adult you may have to listen to your parents concerns about the future....
- Don't ever say "it's not fair" because I'm afraid life's not fair. And you're going to learn that sooner than most.
- Love your sibling unconditionally and show them your love, because that is going to light a light in your parents' hearts and show them that it is all worthwhile
I'm sure there would be a lot more in the book, but it's a start!
So this week has been a bit more topsy turvy than most - half term is quite a struggle for James as he loses all his routine of school. He has adapted reasonably to the complete upheaval of starting school quite well, apart from missing at least a quarter of the second half of last term! When he gets picked up at 745, my heart is no longer heavy and in turmoil - I know that he is in the best possible hands and that he is finally making progress, something we hadn't seen for so long that we'd almost given up hope. But holidays fill me with dread, worry and nervous anticipation. Thank goodness that there is a playscheme at Kids Can Achieve, and James goes there every day it's open! I've used the time he's there as an opportunity to take Bea places I can't go with James in tow - today we went to the garden centre and a lovely cafe and yesterday it was shopping...
On a totally bizarre last note, I found one of my telephones in the kitchen sink this afternoon. I have no idea how it got there, who put it there (I suspect James, but can prove nothing....) and whether it got damaged, but it just shows how chaotic and topsy turvy my life is at times.....
Monday, 16 February 2009
So what are my birthday wishes? Well, I would be really intrigued to know who, if anyone, actually reads this blog, and how you came across it. So, messages would be highly appreciated and as a birthday gift I will donate £1 for every response to this post to my local branch of the National Autistic Society. There's an incentive!
In the last few days I've found myself in a couple of interesting situations. Last week at our coffee morning, I was gobsmacked to see a friend come in for coffee. It turns out she has concerns about her son who is a month older than James. I felt so empowered by my ability to support her and guide her through the various stages of the process and I felt that it is this sort of work that I should be doing now. This was reinforced today at work when the mother of one of my patients told me that her older son had recently been diagnosed with autism - we sorted out the (simple) problems of her younger son, and then I armed her with knowledge and information about autism. She left with a prescription for her youngest child and a list of "homework" to do before our next appointment. It felt like I could give her this information and support knowing she was listening to me - when you are talking to another mother who has experienced the same difficulties you are talking to a kindred spirit. I felt she really listened to me and just hope that when I next see her she has applied for DLA, contacted HomeStart, sorted out Portage and got herself on an EarlyBird course! That's quite a lot of homework...
Anyway, I'm going to sign off now, but wanted to say one last "Happy Blog Birthday" to me!
Friday, 13 February 2009
James has always been drawn to the great outdoors, so our house hunting priority was a house with a good sized garden. I think that we've done well - our garden is around 80 foot long and while it is northish facing, we still get plenty of sun (well, we used to get more but then the neighbours built an enormous extension that steals a lot of sun in summer boo hiss...). But just like the rest of the house, it was heavily neglected and run down and unsafe to leave the children in alone (when I say alone, I mean with me watching closely from the kitchen whilst cooking/cleaning/on the phone, not that I leave my children in the garden while I go out shopping!). We had a complete garden makeover from All Gardening last May, and it was the best thing in the house that we spent money on. The garden has gone from being an eyesore to being the talk of the road and we spent every dry moment of last summer out there (and quite a few wet ones too!). I'm looking forward to seeing the garden blossom over the next few months - spring is well and truly here (I saw snowdrops today as opposed to snow) and we're getting a feel for our garden through the seasons.
Anyway, I seem to have meandered from my point, which was how much things have changed for me in the last 2 years. I think the time around James' diagnosis was perhaps the bleakest in my life. I felt lost in a downwards spiral - I had a 6 month old baby who still needed me completely, and I had just found out my eldest child had a lifelong disability. I felt lost, lonely and scared. Add to that the certain knowledge that I would be leaving my (small but perfectly formed) support group of childminder and friends near our flat when I moved. I had one close friend who had moved nearby to where we were house hunting, but we were going to be travelling very different paths. I was now thrown into a maelstrom of appointments, interventions, training courses, literature on autism, forms to apply for statement of special educational needs, professionals meetings - not the idealised pathway that I had imagined myself travelling as a mother of two juggling life with two children and a fulfilling career. I began to question my abilities - as a mother, as a wife, as a carer, as a doctor, as a friend, as a paediatrician. How was I ever going to cope? What did my life hold for me? What was the point? I just wanted things to be the way I had expected they would be.
It is only now that I see how deeply I grieved for the loss of my son - of course, I hadn't "lost" him in the conventional sense, indeed he was very much alive, but I no longer had the child I thought I had when I held him in my arms through those long, cold December nights. It felt as if someone had stolen him from me and replaced him with a child I no longer recognised, one I had no connection to and one I couldn't understand. But I was wrong - I do and did understand him, probably better than most people, and our connection is very deep and meaningful to both of us. As time has passed I realise that he is still very much the infant I gave birth to, I just didn't know how he was going to grow up. The more time I spend with him and the more I think about his early years, the more easily I have accepted that autism was always a part of him (his poor feeding, his screaming episode the first time we went swimming, the way he didn't really "play" with my friends' children which I initially put down to him not seeing them often, the way he enjoyed the way I read "The Very Hungry Caterpillar" but if someone else read it he turned off because they weren't reading it the "right" way, the way that when I was heavily pregnant I let him spin CDs in their boxes just to get 5 minutes peace, the way his face lit up the first time he went on a roundabout). But the bleak times felt relentless - I cried rivers of tears, I cried anywhere and everywhere - in the park, on the train, at the medical appointments, with friends, with my husband, on my own, whilst watching TV, on the phone. I was terrified of how I would manage once we moved - where would I go with the two children? I couldn't take them to toddler groups on my own as James' behaviour was too difficult to manage without one to one supervision.
Two things changed all of this. My friends on Damsels pointed me towards Home Start a wonderful organisation that provides support and help to parents of young children in a variety of difficult situations. I was able to contact them before we moved and a volunteer was identified for me very soon after we moved. Just that chance of an hour a week with some help for me was liberating. I also contacted the local branch of the National Autistic Society and was very lucky to talk with the local support coordinator who put me in touch with a variety of agencies such as Kids Can Achieve.
So here I am, nearly two years on, finding myself the one who provides support, information and a listening ear to parents who have found themselves on the precipice around diagnosis. What a long road it has been, with a lot of uphill struggles, but I think I am somewhere near to having dealt with my grief and resolving the issues that diagnosis brought up for me.
Thursday, 12 February 2009
I'm not usually one for list but I thought I'd just wrote down a few of the issues that contributed to my absence! They're in no particular order, just as I remember them.
Renal colic - at least this bout didn't require 3 days in patient management. I was mortified at having to call an ambulance but I couldn't have taken my husband and the two children (unfed!) to hospital at 730 in the morning. The ambulance crew were not impressed when they saw how we had to secure the door behind them - a dead lock, chain and 2 stair gates were seen to be putting them in potential danger as they wouldn't have been able to escape easily. I had to point out that if it were not for these measures, our son would be well known to the local police and possibly the ambulance crews....
Infected blisters (severe enough to develop into an abscess which required draining and a course of antibiotices) caused by ill fitting shoes - sorry Clarks but I won't be using your shoe fitting service again. Luckily there is a fantastic service run by Footling where a qualified fitter comes to your home and measures your child's feet. I will never take James to a shoe shop again!
Severe crush injury to Bea's fingertip - sustained on the day that my husband was rushed to hospital (see above). So having told him we couldn't possibly accompany him, we ended up having a jaunt to the A&E department anyway. Luckily it wasn't fractured, although it has taken a LONG time to heal. I expect a call from social services any day now as Bea has had so many A&E attendances over the last 6 months. It is both a reflection of the fact that she is a second child and that we are often preoccupied with keeping James out of danger that she attempts rather brave and foolhardy stunts.
Full time school starting - although, to be honest for the first term James didn't make it through a full week as he caught so many coughs, colds and infections that he was either sent home or kept home at least one day a week before Christmas. The school is amazing - James is so happy there and is making so much progress it makes my heart leap with pride. To think that we were beginning to think we would never hear him talk again when his regression was at its worst.
My return to work - it's not been without hiccups and difficulties, but I am starting to get used to being at work one day a week. More about work another time though.
Christmas - the most stressful, difficult and downright miserable time of year for us. I find the whole thing just gut wrenchingly awful, as if someone is taking my soul from me every day for weeks. There seems to be no end to the festivities and wishes of a happy and peaceful Christmas, and few people truly understand why I find it so difficult. Next year I'm planning to build a den and hibernate. I'll go in in November and come out mid January.
I think that those are the major things. But as I say, things are brighter and better now, and I feel we're coming out of the fog. I hope I'll be around a bit more now.