This is going to be a memorable few months with changes aplenty afoot. As James gets closer to his fifth birthday, I am more aware than ever before of the years passing. He is growing so fast and the years just fly past - I still remember his third birthday, when we were stuck in a limbo between being concerned and having discussed autism and actually getting his final diagnosis. It is only because I have been through the process, I can truly understand what a difficult time that is for parents. I refused to celebrate his birthday - I felt we had so little to "celebrate" - his regression was hitting a peak (or so I thought - little did I realise it would continue for another 18 months albeit at a much slower rate) and I felt further and further removed from his life. I had my very being shattered - if I couldn't predict and pick up my own son's autism, then how could I do it in my professional life? How would I cope with being at work and doing on calls with an autistic child? How could I sit across the desk from a family, asking them questions about their children, knowing that their answers echoed my own? Some of these remain unanswered - I still regularly cry and admonish myself for not having recognised James' autism sooner. My husband asks me what good it would have done, what it would have changed, how it would have helped James or us, and I can't find a good enough answer. The truth is that no matter when he was diagnosed, his current level of understanding and achievement would be no different. But you can't help thinking....
So in the next few weeks we are hitting some pretty grown up milestones - James ought to start school (depending whether the LEA can identify a school for him....). Unlike nursery, where he was only accessing 2 hours a day (and I was only getting 2 hours time away from him) he will be going to school for a whole day at a time. I won't know what to do with myself! I have had a taster of the freedom this will bring as he's been at the playscheme at Kids Can Achieve two days a week over the holidays and I find myself amazed at how much Bea benefits from the time alone with me. I can actually do activities with her that she's missed out on, such as taking her swimming or going out for lunch. Impossible with James in tow or during his 2 hour nursery session. But I still wonder how we're all going to cope when James starts school - for a start, as he will be going on school transport, we'll have to have him ready for the bus before 8am! That's going to be quite a feat, I can tell you (sleep deprivation means that I am VERY sluggish in the mornings....). I have a sneaking suspicion that he will be shattered and end up falling asleep on the bus on the way home, which will be a disaster for us as he then won't go to bed until around 10pm. I'm going to have to do some preparatory work for that too. Packed lunch will be a joke - at Kids Can Achieve he rarely eats his lunch until we're in the car on the way home, so who knows what he'll do at school.....
Meanwhile, Bea is growing up too - she has started to show a distinct interest in toilet training and is running around in knickers most of the time. I find myself excited, pleased and sad all at the same time - she is certainly no longer a "baby" and I mourn that loss. Yet I know how frustrated I get about James' retention of infantile behaviour, so I can see I am contradicting myself! As it looks as though James will be out of school for the greater part of next term, I have taken the step of enrolling Bea in nursery - another huge step for both of us. She starts next week and will be a year and a half younger than James was when he first went to nursery! But I know it's for her benefit in the long run, as she needs role models and peers that don't have autism so she can learn acceptable behaviour from them as well as having the structure that the nursery will provide. It's going to be a busy weekend, sorting everything out....
Friday, 8 August 2008
Sunday, 3 August 2008
Escaping....
It seems so long since I updated my blog and there's been so much happening I don't know what to omit and what to write about!
I'm sitting here, in my tranquil, quiet, no children zone (aka the lounge!) and watching the rain fall down. It's hard to believe that it's only the beginning of August - it feels more like a late autumn day. For the first time in months, the rain isn't giving me a foreboding, hazy feeling - I think I have finally found peace with all that has happened. This time last year, I was embarking on a road trip around Scotland and back to London on my own with the children - my relationship with my parents had hit rock bottom and I was asked to leave their house, where I'd been staying while my husband managed the renovations on the house. It's been a long and difficult journey to get through the last twelve months but I'm glad to say that I have salvaged my relationship with my parents and I can now call my house a home.
When we embarked on the renovations, one of the key features we planned for was the creation of space that was preserved as child free. So our lounge is generally kept for us to use in the evenings or when we're child free. It becomes our retreat at night once the children have gone to bed, somewhere we relax and escape from the chaos that has taken over the rest of our house.
Talking of escaping, I managed to get away with a friend for a few days in July - it was the first time I'd left the children for a night but if I'm totally honest I was so relaxed I hardly had a chance to miss them. Everyone survived (my parents came and helped out) and I came back feeling like I'd been away for 4 weeks rather than 4 nights. Sadly the feeling hasn't lasted - the day after I returned I was told that James won't be able to start school in September as planned. I have no idea what we're going to do as the LEA has left it too late in the day for us to organise an alternative placement for him. So I am likely to be facing having James at home instead of school for several weeks after the start of term. But more about that in another post....
One of the most stressful problems we're having at the moment is that James has become an escape artist himself - mainly out of his clothes and nappy.. So I've had to invest in dungarees for daytime use and some all-in-one pyjamas that we put on back to front so he can't undress and take his nappy off at night. I had never realised that I could be so creative and resourceful when it comes to solving seemingly impossible problems but I have to stay a step ahead of James at all times. For him, there really is no escape....
I'm sitting here, in my tranquil, quiet, no children zone (aka the lounge!) and watching the rain fall down. It's hard to believe that it's only the beginning of August - it feels more like a late autumn day. For the first time in months, the rain isn't giving me a foreboding, hazy feeling - I think I have finally found peace with all that has happened. This time last year, I was embarking on a road trip around Scotland and back to London on my own with the children - my relationship with my parents had hit rock bottom and I was asked to leave their house, where I'd been staying while my husband managed the renovations on the house. It's been a long and difficult journey to get through the last twelve months but I'm glad to say that I have salvaged my relationship with my parents and I can now call my house a home.
When we embarked on the renovations, one of the key features we planned for was the creation of space that was preserved as child free. So our lounge is generally kept for us to use in the evenings or when we're child free. It becomes our retreat at night once the children have gone to bed, somewhere we relax and escape from the chaos that has taken over the rest of our house.
Talking of escaping, I managed to get away with a friend for a few days in July - it was the first time I'd left the children for a night but if I'm totally honest I was so relaxed I hardly had a chance to miss them. Everyone survived (my parents came and helped out) and I came back feeling like I'd been away for 4 weeks rather than 4 nights. Sadly the feeling hasn't lasted - the day after I returned I was told that James won't be able to start school in September as planned. I have no idea what we're going to do as the LEA has left it too late in the day for us to organise an alternative placement for him. So I am likely to be facing having James at home instead of school for several weeks after the start of term. But more about that in another post....
One of the most stressful problems we're having at the moment is that James has become an escape artist himself - mainly out of his clothes and nappy.. So I've had to invest in dungarees for daytime use and some all-in-one pyjamas that we put on back to front so he can't undress and take his nappy off at night. I had never realised that I could be so creative and resourceful when it comes to solving seemingly impossible problems but I have to stay a step ahead of James at all times. For him, there really is no escape....
Friday, 27 June 2008
New beginnings
There seem to be so many things happening around me at the moment that I hardly have time to sit back and appreciate them. The last year has been frantic and very challenging but I finally feel there is light at the end of the tunnel.
The new garden is proving to be a haven - James has always loved being outside and a large garden was one of our essential criteria when we moved. Sadly, the previous owners had neglected the garden so whilst we had the space we also had the bindweed, brambles and building material (6 skips worth!) to contend with. Bea learnt to walk on the old lawn, full of dandelions and horribly uneven. James spent most of last summer with his legs covered in scratches from the brambles and unruly roses. So now that it is a safe, relaxing environment I've finally discovered the joys of gardening. Our last flat had a raised level garden the size of a postage stamp and wasn't particularly fun to be in. I did have a short spell of green fingered dabblings the second summer after we moved in (we got married the first summer) and grew quite a lot of seedlings, but the following summer I was pregnant and haven't had a moment since! I am woefully ignorant when it comes to gardening so when our designer said he was leaving us a plot to use with the children I decided it was about time I learnt a bit more. In my usual manner, that has entailed a bit of shopping - although I don't think 2 books and 10 packets of seeds is that bad! I don't know if it's beginners luck or the fact that the soil was well prepared, but so far so good - I sown sweetcorn, peas, carrots, spring onions, radish and rocket in our bed and everything has germinated. The radish are attracting the slugs so I'm off to find some environmentally friendly (and child friendly!) methods to keep them at bay. Tonight we ate our first salad leaves from my troughs and I'll plant some more soon. My friend brought round some cucumber, courgettes, aubergine and chard yesterday but I'm not sure that they'll all survive outside (we don't have a greenhouse) but I'll give them a whirl too. Bea loves to help me and her sunflowers are doing well and she's getting the hang of dead heading - she's a little overenthusiastic at times though, and keeps offering me various leaves she's picked, telling me they're delicious.
With all this growth going on in the garden I've noticed that James is very happy to be outside on the trampoline or in the summer house with us. In fact, he's started requesting that I join him on the trampoline - I suppose it goes some way towards me getting a bit fitter! We've been using "Intensive Interaction" techniques with him for some time now, but recently he has been reacting more positively to it, as if he's suddenly clicked that we're joining him in his activities. He is showing a lot of affection and when my parents were here they commented on his greater level of intereaction and awareness. It has been a long time coming - it's over 2 years since we really noticed his regression and it seems that he is finally beginning to make a little bit of progress. I look to September, when he starts school, with a sense of trepidation and worry - I just hope he doesn't find the change too difficult and upsetting. He has struggled immensely over the last 9 months at nursery, mainly because it was the wrong environment for him, and I am hoping that the smaller class (there will be 5 other children with ASD in his class) and higher level of support will mean he can start building on these foundations.
Another big change in our life is that I am earnestly looking at going back to work - I've been away for over two years now and feel that if I don't give it a go now I'll never get another chance. In medicine there comes a point where you've got so out of touch that you have to virtually retrain and I don't want that to happen. So I've taken the bull by the horns and am planning to start one day a week in the middle of July. So a lot of our time has been spent trying to find suitable childcare for the children - special needs nannies and childminders are few and far between, but there are some out there. It's been quite daunting, inviting people into our house, interviewing them and having to talk about James' difficulties with virtual strangers, but it's one more step towards me getting this part of my life back on track.
The new garden is proving to be a haven - James has always loved being outside and a large garden was one of our essential criteria when we moved. Sadly, the previous owners had neglected the garden so whilst we had the space we also had the bindweed, brambles and building material (6 skips worth!) to contend with. Bea learnt to walk on the old lawn, full of dandelions and horribly uneven. James spent most of last summer with his legs covered in scratches from the brambles and unruly roses. So now that it is a safe, relaxing environment I've finally discovered the joys of gardening. Our last flat had a raised level garden the size of a postage stamp and wasn't particularly fun to be in. I did have a short spell of green fingered dabblings the second summer after we moved in (we got married the first summer) and grew quite a lot of seedlings, but the following summer I was pregnant and haven't had a moment since! I am woefully ignorant when it comes to gardening so when our designer said he was leaving us a plot to use with the children I decided it was about time I learnt a bit more. In my usual manner, that has entailed a bit of shopping - although I don't think 2 books and 10 packets of seeds is that bad! I don't know if it's beginners luck or the fact that the soil was well prepared, but so far so good - I sown sweetcorn, peas, carrots, spring onions, radish and rocket in our bed and everything has germinated. The radish are attracting the slugs so I'm off to find some environmentally friendly (and child friendly!) methods to keep them at bay. Tonight we ate our first salad leaves from my troughs and I'll plant some more soon. My friend brought round some cucumber, courgettes, aubergine and chard yesterday but I'm not sure that they'll all survive outside (we don't have a greenhouse) but I'll give them a whirl too. Bea loves to help me and her sunflowers are doing well and she's getting the hang of dead heading - she's a little overenthusiastic at times though, and keeps offering me various leaves she's picked, telling me they're delicious.
With all this growth going on in the garden I've noticed that James is very happy to be outside on the trampoline or in the summer house with us. In fact, he's started requesting that I join him on the trampoline - I suppose it goes some way towards me getting a bit fitter! We've been using "Intensive Interaction" techniques with him for some time now, but recently he has been reacting more positively to it, as if he's suddenly clicked that we're joining him in his activities. He is showing a lot of affection and when my parents were here they commented on his greater level of intereaction and awareness. It has been a long time coming - it's over 2 years since we really noticed his regression and it seems that he is finally beginning to make a little bit of progress. I look to September, when he starts school, with a sense of trepidation and worry - I just hope he doesn't find the change too difficult and upsetting. He has struggled immensely over the last 9 months at nursery, mainly because it was the wrong environment for him, and I am hoping that the smaller class (there will be 5 other children with ASD in his class) and higher level of support will mean he can start building on these foundations.
Another big change in our life is that I am earnestly looking at going back to work - I've been away for over two years now and feel that if I don't give it a go now I'll never get another chance. In medicine there comes a point where you've got so out of touch that you have to virtually retrain and I don't want that to happen. So I've taken the bull by the horns and am planning to start one day a week in the middle of July. So a lot of our time has been spent trying to find suitable childcare for the children - special needs nannies and childminders are few and far between, but there are some out there. It's been quite daunting, inviting people into our house, interviewing them and having to talk about James' difficulties with virtual strangers, but it's one more step towards me getting this part of my life back on track.
Wednesday, 18 June 2008
Happy Birthday
It's official, I am now half way to 70! I had a lovely day but somehow it was tinged with sadness, as I remembered my last "big" birthday when I hit 30.
Rewind 5 years and I am 18ish weeks pregnant, feeling my baby kick me, enjoying the blooming and blossoming stage (the nausea and exhaustion was starting to tail off by then!). We were abroad as we had decided to take a 2 week holiday in a deserted part of Cephalonia - we knew our lives were going to change forever in a matter of weeks, but we had no idea how much. I was a realist, and knew that the early years would be hard but I never expected it to be this hard. I guess that in my line of work, you can't ignore the fact that not every pregnancy has a perfect outcome and that even if you have a healthy baby that's no guarantee that you won't encounter problems further down the line, but like most people had never imagined it would happen to me. It's one thing seeing and diagnosing children with autism and other developmental difficulties but quite another to discover that your own child has a life long disabilty. Perhaps it's because of my professional background that I've struggled so much over the last 2 years - I haven't been able to be "innocent" and "uninformed" as everyone has expected me to know the answers. Sadly, with autism there are no certainties and I still don't have the answers. They say that too much knowledge is a bad thing, and I couldn't agree more - perhaps because I have seen the worst case scenarios and the poor outcomes I've wallowed more than most parents. I've talked to parents of older children who have said they were glad that at the time of diagnosis they didn't know how hard the struggle might be - I don't have that, I have seen the struggles, inadequacies and failings of the systems and I have seen both the positive outcomes and the negatives. I feel overwhelmed, surrounded by this sea of knowledge, unable to filter the useful from the inappropriate.
Another reason I've found this year hard is that so many things are happening on a daily basis that make me realise that James was struggling for a few months before I "noticed". The parenthesis are there because I often wonder if I was subconsciously denying the problems, or whether I was so wrapped up in my pregnancy (which was not without its complications) and new baby that I ignored them. Almost every day Bea does something that I know James couldn't do at the same age (and still can't - but that's another discussion altogether). So when my husband sent her in to me with my birthday card and she gave it to me with a big grin on her face as she said "Happy Birthday Mummy" I wept tears. Tears of joy because she looked so earnest and it was so touching and tears of sadness because I remember trying to get James to wish his daddy a happy birthday a couple of weeks after he was two. I shrugged and thought it was a bit much to expect of him. Clearly it wasn't.
Rewind 5 years and I am 18ish weeks pregnant, feeling my baby kick me, enjoying the blooming and blossoming stage (the nausea and exhaustion was starting to tail off by then!). We were abroad as we had decided to take a 2 week holiday in a deserted part of Cephalonia - we knew our lives were going to change forever in a matter of weeks, but we had no idea how much. I was a realist, and knew that the early years would be hard but I never expected it to be this hard. I guess that in my line of work, you can't ignore the fact that not every pregnancy has a perfect outcome and that even if you have a healthy baby that's no guarantee that you won't encounter problems further down the line, but like most people had never imagined it would happen to me. It's one thing seeing and diagnosing children with autism and other developmental difficulties but quite another to discover that your own child has a life long disabilty. Perhaps it's because of my professional background that I've struggled so much over the last 2 years - I haven't been able to be "innocent" and "uninformed" as everyone has expected me to know the answers. Sadly, with autism there are no certainties and I still don't have the answers. They say that too much knowledge is a bad thing, and I couldn't agree more - perhaps because I have seen the worst case scenarios and the poor outcomes I've wallowed more than most parents. I've talked to parents of older children who have said they were glad that at the time of diagnosis they didn't know how hard the struggle might be - I don't have that, I have seen the struggles, inadequacies and failings of the systems and I have seen both the positive outcomes and the negatives. I feel overwhelmed, surrounded by this sea of knowledge, unable to filter the useful from the inappropriate.
Another reason I've found this year hard is that so many things are happening on a daily basis that make me realise that James was struggling for a few months before I "noticed". The parenthesis are there because I often wonder if I was subconsciously denying the problems, or whether I was so wrapped up in my pregnancy (which was not without its complications) and new baby that I ignored them. Almost every day Bea does something that I know James couldn't do at the same age (and still can't - but that's another discussion altogether). So when my husband sent her in to me with my birthday card and she gave it to me with a big grin on her face as she said "Happy Birthday Mummy" I wept tears. Tears of joy because she looked so earnest and it was so touching and tears of sadness because I remember trying to get James to wish his daddy a happy birthday a couple of weeks after he was two. I shrugged and thought it was a bit much to expect of him. Clearly it wasn't.
Wednesday, 11 June 2008
Mummy, I want....
How long have I waited to hear those words? So much about typical human developement can be understood with just that little sentence - the child has recognised the need to address the adult ("mummy") in order to share their desire, they have a sense of self as distinct from their carer ("I") and they understand that the carer doesn't know what they are thinking/feeling/wanting. Without the ability to share your needs and desires, caring for the child can become a guessing game, sometimes hitting the jackpot and other times ending up with a rather frustrating series of incorrect guesses that are rejected. James occasionally shouts out random words (in particular "want water") but we're never sure if he really means it (at the start of his regression, when Bea was a newborn his favourite phrase was "want a wee wee, want a poo poo" which was incredibly frustrating - countless times a day we'd find the potty, undress him, sit him on, find he wouldn't perform, redress him then he'd dirty his nappy 10 minutes later. I found it difficult to deal with to say the least....). We try to filter out what we do and don't respond to, which is especially hard when he finds communication so difficult. It is so tempting to respond to every attempt to communicate, but there are times when I just can't do what he's requesting, or don't actually understand what he wants/needs. As is typical of autistic people, James rarely directs his communication to anyone - it is more obvious now we are in this house rather than our old flat as he will be in the kitchen saying "water" when I am in the playroom.
So it's a bit of a kick in the teeth that the first time I heard "Mummy, I want...." it came out of the mouth of Bea, a day or so after her second birthday. I imagine this is the start of a slippery slope - gone are the days I can meander round the supermarket without the clammer of "Mummy, I want...."! So occasionally there are some benefits to James' difficulties - he has never pestered me for anything!
So it's a bit of a kick in the teeth that the first time I heard "Mummy, I want...." it came out of the mouth of Bea, a day or so after her second birthday. I imagine this is the start of a slippery slope - gone are the days I can meander round the supermarket without the clammer of "Mummy, I want...."! So occasionally there are some benefits to James' difficulties - he has never pestered me for anything!
Saturday, 31 May 2008
Not again!
They say truth is stranger than fiction and I definitely agree. For the second time in her short life Bea has broken a bone. This time it's "just" her wrist (a torus fracture of her radius) but it's going to be harder than her collar bone as she's in plaster. So I'm sitting here debating whether to fork out a small fortune for a waterproof plaster cast cover or to risk improvising with a plastic bag and an elastic band. My husband has pointed out that since I've become obsessed with recycling there aren't many plastic bags in the house so it may have to be a bin liner!
In many ways I was lucky - this time it happened at the end of the day so we haven't had to endure a whole day of screaming and tears. Plus, as it was the weekend my husband was able to take care of James while I rushed to the hospital. There's no way he'd have been able to cope with the waiting area if he'd come along and I don't know if I'd have been able to manage with both children on my own.... She was so brave and let the nurse and radiographers handle her, wiping her tears away with her muslin and whimpering for James. Recently she's developed such a strong attachement to him that at times it's heartbreaking. If he isn't around in the day she'll cry and ask for him and if he is around she chases him around (while he ignores her), desperate for him to play with her. I find that so hard to watch as I worry that one day she'll stop trying. I know as she gets older we'll be able to explain to her that James is autistic and that's why he behaves the way he does, but right now she's not old enough to understand it properly. I do sometimes tell her that James is different and hasn't learnt to use cutlery/ wee on the potty/ not chew his tee shirt but usually it encourages her to copy his behaviour. At least that's a reassuring feature of normal development!
She wasn't too impressed when it dawned on her that the plaster cast was here to stay although now monkey is trussed up to match we're hoping she'll tolerate it a bit more. The plaster will be on for two weeks, which means we'll get it taken off just in time for our annual trip to London Zoo for "Special Children's Day". I guess my plans to take her swimming while James is at nursery are on the back burner for a while....
In many ways I was lucky - this time it happened at the end of the day so we haven't had to endure a whole day of screaming and tears. Plus, as it was the weekend my husband was able to take care of James while I rushed to the hospital. There's no way he'd have been able to cope with the waiting area if he'd come along and I don't know if I'd have been able to manage with both children on my own.... She was so brave and let the nurse and radiographers handle her, wiping her tears away with her muslin and whimpering for James. Recently she's developed such a strong attachement to him that at times it's heartbreaking. If he isn't around in the day she'll cry and ask for him and if he is around she chases him around (while he ignores her), desperate for him to play with her. I find that so hard to watch as I worry that one day she'll stop trying. I know as she gets older we'll be able to explain to her that James is autistic and that's why he behaves the way he does, but right now she's not old enough to understand it properly. I do sometimes tell her that James is different and hasn't learnt to use cutlery/ wee on the potty/ not chew his tee shirt but usually it encourages her to copy his behaviour. At least that's a reassuring feature of normal development!
She wasn't too impressed when it dawned on her that the plaster cast was here to stay although now monkey is trussed up to match we're hoping she'll tolerate it a bit more. The plaster will be on for two weeks, which means we'll get it taken off just in time for our annual trip to London Zoo for "Special Children's Day". I guess my plans to take her swimming while James is at nursery are on the back burner for a while....
Wednesday, 28 May 2008
What a difference a year makes
This time last year I was sitting amongst a wall of packing boxes wondering if we'd ever see the end of them. We had finally moved from our tiny one and a half bedroom lower ground floor flat in central(ish) London to a three bedroom semi in the suburbs, and I couldn't believe how many boxes we'd filled. Our flat must have been a tardis - the removal men just kept taking more and more and more boxes to the lorry and things seemed to appear out of nowhere! We had been renting a storage unit too (I have a complete inability to get rid of anything and have a dreadful habit of buying things "in advance" and "just in case" - how it's come back to bite me, as I have a garage full of toys that I bought for James that he will never be able to use or be interested in. There's something particularly cruel in that) so when they unloaded the last thing at 10pm on the Friday night I could have cried. The house had been left in a state - the kitchen was filthy, all the "fancy" electric sockets and light sockets had been replaced with basic white plastic ones, the garden was unsafe for the children as it was full of brambles and building materials, the doorbell had been removed, and the fitted wardrobes had vanished (I had clocked that they weren't included in the sale on the fixtures and fittings list, but had visited the house two days before we moved when it had been unoccupied for 3 weeks and they were still there so I had lulled myself into a false sense of security that the previous owner would leave them after all. I mean, the clue's in the name "fitted wardrobes" - I still have no idea what she did with them after removing them, or why she removed them in the first place!). The internal decor had left a lot to be desired when we had viewed but stepping back over the threshold the reality of what we had let ourselves in for became apparent. There wasn't one room that could be left untouched.
So here we are a year later and we now have a "home" rather than a shell. We have managed to do the following:
So here we are a year later and we now have a "home" rather than a shell. We have managed to do the following:
- rewire the house
- strip the floorboards and varnish/stain them
- strip the wallpaper and then plaster and decorate the master bedroom, Bea's room, playroom and lounge, including replacing skirting boards and picture rail and blocking up a serving hatch between the playroom and lounge
- build a virtually fitted wardrobe in the master bedroom
- replace the boiler
- landscape the garden
There's still plenty to be done, notably James' bedroom and the bathroom, and as with the Forth Road Bridge, it feels as though we're going to get to the end of it all and need to start again but at least we've broken the backbone. The garden was our biggest project, and has only just finished - just in time for all this rain! Apparently they removed over 6 skips full of building materials in the first week.... I am looking forward to sitting in my summer house, admiring the beautiful planting and landscaping and planning my Summer Solstice celebration!
Sunday, 18 May 2008
All gone
Finally, we've done it - when James began chewing his hair in earnest a couple of weeks ago (coinciding with the good weather and us putting him in t shirts) we agreed we were going to have to do something drastic. For the last four years (well, since it was long enough to be classed as "long") we have left James' hair long as it suits him so well. He has lovely blonde highlights that swish and sway when he shakes his head back and forth (one of his many stims!) and he has a pretty obvious plagiocephaly, so keeping his hair longer avoids the "Phil Mitchell" look. But I've seen pictures of trichobezoars (hairballs to you and me!) in medical journals and knowing my luck, James would be one of the rare cases that develop intestinal obstruction and require surgery to remove it! So after a lot of agonising and soul searching we decided to have it cut quite drastically. Ronan was a star, once again, and very patient with James throughout the "procedure". I was virtually in tears watching his locks fall to the ground, wondering if I was doing the right thing. When we walked out, he was barely recognisable to me - he looks much older and more "masculine" (although he has very male features, with his longer cut he was usually referrred to as a "girl" even when in what I'd call "boyish" clothes). I'm still doing a double take when I get him out of bed in the morning. I think he suits it shorter, but we've deliberately left him with a surfer look - it's much easier to look after now and we're not having to spend 10 minutes getting the knots out in the morning. Most importantly, he can't get his hair in his mouth - so he's taken to chewing the front of his t shirts! That one's going to be a bit more difficult to prevent I think....
Sunday, 11 May 2008
A week away
We're having some pretty major work done on our garden at the moment, and that has entailed both doors being open - impossible to manage with James. So I was glad that we'd organised a week away to the back of beyond. As a child we used to spend a week of our holidays in a Forestery Commission log cabin so when I stumbled across their new site I knew I'd found the place for us. We really needed a total escape and it's far easier for us to be in the middle of nowhere with James than in a crowded busy hotel.
I hadn't quite banked on the traffic on the way up - it was Bea who gave us more trouble than James though! He has always loved the sensation of movement and very rarely complains in the car. Bea on the other hand started crying about 20 minutes into the journey and kept going on and off for the next 7 hours. So on her birthday wish list is an in car DVD player - I remember how I used pat myself on the back and feel so smug about how happy James was to sit in the car and that he had no need of such entertainment. Don't feel so smug now though. It's often hard to sort out what is down to James' autism and what is just "normal" though. For instance, he has become pickier and fussier when it comes to eating and I never quite know how far to push it. His reluctance to try different and "new" things is most likely part of his autism, but there are lots of neurotypical 4 year olds who are pretty fussy. But on the other hand you can usually do some bargaining with them to at least get things tasted if not enjoyed (once again, though, this is starting to backfire on me as Bea is now demanding "teeny tiny Pontipine" pieces of every foodstuff - I thought it was a good idea at the time!!!). No amount of bargaining/explaining/begging works with James - occasionally I can almost force a orsel in his mouth but then I find myself feeling uneasy as that isn't really a long term approach or solution.
Overall, the holiday was really positive - James loved being out in the forest (obviously wearing his rucksack with reins) and Bea had a ball too. We had a wonderful day at Flamingoland where he must have had enough sensory stimulation to last most people a lifetime - he was in heaven with all the rocking, spinning, whizzing and water! He even noticed one or two of the animals - although I don't think he was that impressed to see the baby camel being born.....
But now we're back to reality and are exhausted again already. The washing machine has been on overdrive, I dragged the children food shopping yesterday and Special K that has been scattered all over the kitchen. Some things never change........
I hadn't quite banked on the traffic on the way up - it was Bea who gave us more trouble than James though! He has always loved the sensation of movement and very rarely complains in the car. Bea on the other hand started crying about 20 minutes into the journey and kept going on and off for the next 7 hours. So on her birthday wish list is an in car DVD player - I remember how I used pat myself on the back and feel so smug about how happy James was to sit in the car and that he had no need of such entertainment. Don't feel so smug now though. It's often hard to sort out what is down to James' autism and what is just "normal" though. For instance, he has become pickier and fussier when it comes to eating and I never quite know how far to push it. His reluctance to try different and "new" things is most likely part of his autism, but there are lots of neurotypical 4 year olds who are pretty fussy. But on the other hand you can usually do some bargaining with them to at least get things tasted if not enjoyed (once again, though, this is starting to backfire on me as Bea is now demanding "teeny tiny Pontipine" pieces of every foodstuff - I thought it was a good idea at the time!!!). No amount of bargaining/explaining/begging works with James - occasionally I can almost force a orsel in his mouth but then I find myself feeling uneasy as that isn't really a long term approach or solution.
Overall, the holiday was really positive - James loved being out in the forest (obviously wearing his rucksack with reins) and Bea had a ball too. We had a wonderful day at Flamingoland where he must have had enough sensory stimulation to last most people a lifetime - he was in heaven with all the rocking, spinning, whizzing and water! He even noticed one or two of the animals - although I don't think he was that impressed to see the baby camel being born.....
But now we're back to reality and are exhausted again already. The washing machine has been on overdrive, I dragged the children food shopping yesterday and Special K that has been scattered all over the kitchen. Some things never change........
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