I am just overwhelmed, amazed and speechless. That a group of strangers care enough about me and my family and our current difficulties that they have clubbed together and paid for some respite for us for James. But then I shouldn't be shocked, really, as that is the whole ethos of an internet forum - it's there to support people in all sorts of ways. I often find myself giving medical advice on threads about children's health issues (although I always cover myself by saying that I can't diagnose without seeing the child) and I am now considered an expert in baby led weaning and sling wearing, so I hope I have helped people with problems in the past. Now it's my turn to receive some greatly appreciated help and I am stunned. I am also angry as if the social services department was doing their job properly and handling their account appropriately, there would be plenty of funding for us to access respite through them, rather than having to depend on the kindness of strangers. It seems unfair that the government spout political nonsense about "Every Disabled Child Matters" and that families of children with disabilities are entitled to short breaks, yet the funding isn't avaialble to give this desperately needed respite. Or perhaps the money is there, it just isn't used properly. How the people who make their decisions, and suggest that our case isn't strong enough, can look at themselves in the mirror, I don't know...
Talking of kind deeds, on Ravelry, there's a forum called "Random Acts of Kindness" which is a wonderful set up where you make/give someone an item just because. You can make a wish list (I really struggled with that as I'm not particularly good at asking for things!) and then people either surprise you or contact you to offer something. This week I received a set of double pointed needles and have started knitting in the round - a skill I thought I'd never master, but which is deceptively easy! Another kind person sent my husband some gummy sweets - he's now stopped complaining about my knitting forums! I've sent out a couple of books and am making some scarves for people, so I feel I'm doing my bit. I am a strong believer in karma and it seems that the karma fairy is being good to me at the moment....
Saturday, 6 September 2008
Friday, 29 August 2008
It's all go here!
Life in the fast lane isn't usually a phrase I associate with myself (I guess I see myself lacking in get up and go - I'm more "get up and sit down"!!!), but recently I've pulled my socks up and seem to be getting places fast. Or at least, faster than usual! I am trying hard not to procastinate so much and am finding I'm less weighed down by indecision. My husband has even commented on how much easier I'm being and how much happier we are at the moment.
As you know, I'm hoping to get back to work very soon. I had hoped that I'd be at the hospital induction next week, but that's looking unlikely now. Just as well, really, as we haven't got proper childcare sorted. I had used Gumtree to advertise for a nanny. That was quite an experience - the responses included one nanny who said "I hope you have a nice big car for me to drive" and plenty of people who assured me they love children and watching them play and use their imagination. They had obviously failed to read my (detailed) advert which clearly stated James' difficulties and mentioned a need to have experience of special needs. Oh well. We did come across two fantastic potential nannies, but sadly their circumstances meant we were unable to employ them. I was planning on chosing a "good enough" candidate but thought I'd give the local Children's Information Services a ring and find out whether there were any local childminders with experience of autism. To my surprise a letter landed on my doorstep today with three numbers. I called the first and was amazed to find a vacancy for both children on the day I need. It's not often that the Gods look favourably on me, so I'm grabbing the bull by the horns, taking the children to meet her next week and hopefully they'll start with her the following week. It's such a weight off my mind to know that the person who will look after them will have a degree of understanding of James' needs and difficulties. He needs patient, quiet, dependable carers who will give him the extra attention he thrives on and I have a gut feeling that this is the carer for him. The bonus is that her house is on the way to work and a stone's throw from the station!
Sadly, it's not all go at the LEA - they confirmed that the school were unable to recruit a teacher so there's no way James will start at his planned school this term. I am devestated to say the least. But I will keep up my fight to try to get him into Radlett Lodge School as soon as possible. We have an assessment date soon, so that's a start.
Another kick in the teeth was when my social worker informed me that we had been turned down (again) for respite. I find it hard to believe that in this day and age we spend more money on arms and defence than we do on health and social care put together. From tomorrow, James is at home 24 hours a day, 7 days a week and I get no help or support from any voluntary or statutory agency. Yes, we'd rather send soldiers to Afganistan than help a desperate mother to grab an hour a week of much needed respite. It's outrageous.
As you know, I'm hoping to get back to work very soon. I had hoped that I'd be at the hospital induction next week, but that's looking unlikely now. Just as well, really, as we haven't got proper childcare sorted. I had used Gumtree to advertise for a nanny. That was quite an experience - the responses included one nanny who said "I hope you have a nice big car for me to drive" and plenty of people who assured me they love children and watching them play and use their imagination. They had obviously failed to read my (detailed) advert which clearly stated James' difficulties and mentioned a need to have experience of special needs. Oh well. We did come across two fantastic potential nannies, but sadly their circumstances meant we were unable to employ them. I was planning on chosing a "good enough" candidate but thought I'd give the local Children's Information Services a ring and find out whether there were any local childminders with experience of autism. To my surprise a letter landed on my doorstep today with three numbers. I called the first and was amazed to find a vacancy for both children on the day I need. It's not often that the Gods look favourably on me, so I'm grabbing the bull by the horns, taking the children to meet her next week and hopefully they'll start with her the following week. It's such a weight off my mind to know that the person who will look after them will have a degree of understanding of James' needs and difficulties. He needs patient, quiet, dependable carers who will give him the extra attention he thrives on and I have a gut feeling that this is the carer for him. The bonus is that her house is on the way to work and a stone's throw from the station!
Sadly, it's not all go at the LEA - they confirmed that the school were unable to recruit a teacher so there's no way James will start at his planned school this term. I am devestated to say the least. But I will keep up my fight to try to get him into Radlett Lodge School as soon as possible. We have an assessment date soon, so that's a start.
Another kick in the teeth was when my social worker informed me that we had been turned down (again) for respite. I find it hard to believe that in this day and age we spend more money on arms and defence than we do on health and social care put together. From tomorrow, James is at home 24 hours a day, 7 days a week and I get no help or support from any voluntary or statutory agency. Yes, we'd rather send soldiers to Afganistan than help a desperate mother to grab an hour a week of much needed respite. It's outrageous.
Thursday, 14 August 2008
Branching out
Wow. How things are turning around and in a good way. I am quite stunned at the way this week has panned out.
First of all, I received all my goodies to embellish my items for "Made for you, by Shamu". I am now the proud owner of business cards, sticky labels and post it notes! Just waiting for my labels to arrive and I'll be off. I am in a very productive mode at the moment - Ravelry have been running an Olympic knit-a-long and I've signed up to create 11 projects before the end of the Olympic closing ceremony. My husband is now a crochet widow although he's not complaining too much as I am including items that I've left aside for ages and am determined to finish them. I'll load some photos and prices up on my website later so come and have a look! If things go well I may open an Etsy shop as I've been browsing a lot and am really excited by all the beautiful crafted items there.
Meanwhile, my husband has had three job offers in the last two weeks. This is the man who has been in the same job for over 8 years (this is quite unusual in his line of work, a fact that was celebrated at a lunch in his honour earlier this year!) so it's been quite an upheaval. He accepted one of the offers earlier this week, having considered the terms and pay rise (less holiday, more pay) and finally told his immediate boss yesterday. To our surprise, his current company have matched the offer so he gets all the perks of his current job and the pay rise we need so badly. Plus he doesn't have to write a letter of resignation!
Talking of jobs, I have my meeting with my consultant next week and am quite excited about the prospect of going back to work. I've just got my head around the thought of leaving the children while I swan off to work and childcare is almost sorted. Then a letter arrives on my doorstep asking whether I would be willing to meet some first year medical students and talk about James' condtion and the impact it has had on our lives. This will be their first exposure to "real life" patients and it is an important part of the curriculum so I was happy to agree. While I was on the phone I mentioned my professional interest and that I hold several medical education certificates, and asked whether I could work with the department in any other role. So as long as I can get my consultant to organise an honorary contract, it looks as though I've just got myself another job as a student tutor for the patient contact course! I am really excited about that and really pleased I took the bull by the horns and asked. Sometimes it pays to ask.
First of all, I received all my goodies to embellish my items for "Made for you, by Shamu". I am now the proud owner of business cards, sticky labels and post it notes! Just waiting for my labels to arrive and I'll be off. I am in a very productive mode at the moment - Ravelry have been running an Olympic knit-a-long and I've signed up to create 11 projects before the end of the Olympic closing ceremony. My husband is now a crochet widow although he's not complaining too much as I am including items that I've left aside for ages and am determined to finish them. I'll load some photos and prices up on my website later so come and have a look! If things go well I may open an Etsy shop as I've been browsing a lot and am really excited by all the beautiful crafted items there.
Meanwhile, my husband has had three job offers in the last two weeks. This is the man who has been in the same job for over 8 years (this is quite unusual in his line of work, a fact that was celebrated at a lunch in his honour earlier this year!) so it's been quite an upheaval. He accepted one of the offers earlier this week, having considered the terms and pay rise (less holiday, more pay) and finally told his immediate boss yesterday. To our surprise, his current company have matched the offer so he gets all the perks of his current job and the pay rise we need so badly. Plus he doesn't have to write a letter of resignation!
Talking of jobs, I have my meeting with my consultant next week and am quite excited about the prospect of going back to work. I've just got my head around the thought of leaving the children while I swan off to work and childcare is almost sorted. Then a letter arrives on my doorstep asking whether I would be willing to meet some first year medical students and talk about James' condtion and the impact it has had on our lives. This will be their first exposure to "real life" patients and it is an important part of the curriculum so I was happy to agree. While I was on the phone I mentioned my professional interest and that I hold several medical education certificates, and asked whether I could work with the department in any other role. So as long as I can get my consultant to organise an honorary contract, it looks as though I've just got myself another job as a student tutor for the patient contact course! I am really excited about that and really pleased I took the bull by the horns and asked. Sometimes it pays to ask.
Monday, 11 August 2008
The good life
I am definitely having a mid life crisis - I found myself chatting to a friend last night while making damson cheese, as we had a glut of damsons and I'd already made over a kilo of damson jam last week! I prowl my vegetable plot and inspect each and every specimen - I have a couple of ridge cucumbers, several courgettes, peas, aubergines, chard, carrots and lettuce that are all doing well. Harvesting should begin soon, although the amount of damsons I've had to deal with have kept me busy! So I have decided that this year all my Christmas gifts are going to be home made - I have already got the jams and cheeses ready and labelled and have made a list of other jams, jellies and chutneys that I'm going to make. So everyone will receive at least one foodie gift.
I've also thought long and hard about my knitting and crocheting, and have decided to try and make some pocket money selling my crafted items. So I've set up a blog that will showcase some of my creations and eventually help me sell some of my items - come and have a look and let me know what you think. I've called it "Made for you, by Shamu" and have already comissioned some address labels and business cards. My friend Vic, who has set up her new web based yarn selling business, Cafe Knit, has a stall at Queen's Park Day and I've offered to go along to help out. In return, she's going to let me put some of my wares on show for sale - so if I don't update my blogs much over the next month it's because I'm so busy knitting!
I've also thought long and hard about my knitting and crocheting, and have decided to try and make some pocket money selling my crafted items. So I've set up a blog that will showcase some of my creations and eventually help me sell some of my items - come and have a look and let me know what you think. I've called it "Made for you, by Shamu" and have already comissioned some address labels and business cards. My friend Vic, who has set up her new web based yarn selling business, Cafe Knit, has a stall at Queen's Park Day and I've offered to go along to help out. In return, she's going to let me put some of my wares on show for sale - so if I don't update my blogs much over the next month it's because I'm so busy knitting!
Friday, 8 August 2008
Growing up
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....
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....
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!
Subscribe to:
Posts (Atom)
Posts
