Monday, 23 March 2009
Happy Mother's Day!
Six years ago, on Mother's Day, I found myself holding a white stick with two clear pink lines. We danced around the flat, shaking, crying (with happiness), amazed that we had achieved this incredible thing - we had made a baby. I was stunned, as I had previously been told I would probably find conceiving difficult and need medical support, but it had all happened naturally, within three months of trying. We held each other close and from that moment on, I began to see myself as a mother. I imagined future Mother's Days, with cards, hugs, kisses and joy. I wondered what my baby would be like, how s/he would be at one, two, five, ten. In all my imaginings I never considered that I would be mothering a severely disabled child. I was realistic - things were never going to be the same, it was no longer just me and my husband, we had another life to consider, another human being to nourish, teach, love and support. But not once did I consider that I might have to deal with continued frustration, constant worry, stress, anxiety and rejection from my own child. I guess you tend to look at child rearing with rather rose tinted spectacles during your first pregnancy.
This was the first Mother's Day, of six, that I was greeted with "Happy Mother's Day!" by my child. But not by James, by Beatrix. I don't know whether James will ever learn to use phrases like that, he's just about stringing a two word phrase together, mainly "Want x or y or z" relating to food! Perhaps with time he will. I was treated to a leisurely afternoon, relaxing in my summer house, knitting and reading the paper. Though I had taken James swimming and then on his weekly social exercise at the supermarket, so I felt like I deserved some time off. I watched as the children jumped on the trampoline and climbed their new climbing frame and I felt blessed. I think this is a reflection of me having accepted things more readily now, and seeing that we can't change James, and love him as he is. For me, and for my husband, we share the view that if someone could take away James' autism, we would do it without a moment's hesitation, but that's not going to happen, so acceptance eases the burden of grief and loss.
So I'm relaxed and bathing in the hazy glow of maternal love when my husband asks me to take a look at Bea's neck - she's got lots of red spots. My bubble bursts - the dreaded chicken pox. That's a full week of quarantine at home. And then in a couple of weeks James is going to get it too. Quickly do the maths, and realise it will be the school holidays. Joy. Oh well, onwards and upwards! Happy Mother's Day - I wasn't expecting that sort of present!!!
Monday, 16 March 2009
Friendships
Friendships and autism don't really mix - the children with high functioning autism and Aspergers often desperately want friends but are let down by their social skills and their inability to "read" other people. This can lead to a lot of stress and even depression during their adolescent years - imagine the loneliness and isolation, knowing you're different, but unable to conform and "fit in" at a time when being part of the crowd is so important. And then there's the children like James, who have no idea what a friendship is, so aren't even aware of what they're missing out on. James is so engaged in his own (autistic) world that he doesn't notice people coming and going, and is very isolated in his "play" (if you can call it that) so anyone who tries to be friendly is ignored. Like a lot of autistic children, he prefers the company of adults and older children - I guess because they're more likely to help him get his needs met. I do get upset from time to time, but then I console myself with the thought that he won't get hung up on all the intricacies and challenges that adolescent friendships bring. No falling out with friends, no trying hard to support them through difficult times, no feeling left out when they meet new people, no worries about fitting in. Perhaps these are more "female" views of friendship, but I'm sure boys go through a lot of this too. I have a feeling that Bea is going to give me a double dose of teenage angst though, so perhaps I should be thanking my lucky stars!
My friendships are a source of support, laughter, hugs, booze and hope. Over the last two years I have met so many inspiring, special people who have helped me in all sorts of ways. I don't know where I'd be now if it weren't for them. I really need my friends, and hope that to some extent they need me, even if it is only for more yarn related advice! It's funny, when I think back to the days surrounding the time of James' diagnosis when all I could see was closed doors and doom and gloom I can't help seeing a new perspective now. It's as if he's opened doors for me, brought these wonderful people into my life and made it all happen.
Here's to autism and friendships - maybe they don't go hand in hand directly, but in a roundabout way, through joint experience and understanding, they are strongly interlinked.
Tuesday, 10 March 2009
Laughter is the best medicine
With my new drive and vigour comes a return of laughter into my life. I find so little to fuel my sense of humour through the winter period, but now I'm full of hope and laughter. The best source of laughter for me is usually my children - James has episodes of manic laughter which we often can't fathom, but they're so intense it's impossible NOT to join in. Bea is going through a very amusing phase and comes out with all sorts of funnies, telling my husband "you got boobies daddy" (I think she meant nipples - his physique is a LONG way away from developing man boobs!), pointing out people falling asleep in the coffee shop, telling me I can stop cleaning and go to the ball with Prince Charming (and of course, I did as she said, I'm never one to cry off a ball, and housework is a definite second to a hot date!). But topping the charts for laughter provision this week is my good friend's blog - Slightly South of Sanity. I beg you to read it. I challenge you to read it and not cry tears of laughter - I read passages out to my husband and we're both in stitches. She has such a way with words, and I know for a fact that none of this is made up! So if you're in need of a pick-me-up, don't turn to the gin, pour yourself a double dose of laughter!
Sunday, 8 March 2009
General ignorance
Two incidents today had my blood boiling, and sadly these aren't isolated incidents. They chill me to my core, as I am seeing the world that we truly live in at its ugliest. The attitudes towards disability, the speed with which people pass judgement and make comments, the arrogance that is so blatantly displayed - this is the legacy that I am passing on to my son. This is what I have to hope he is able to overcome in order to fulfil his potential, achieve meaning in his future, and live a happy, safe life. It fills me with great sadness, as he has enough hurdles to jump and here society will add its own.
Parking spaces - a much discussed and moaned over topic in my parenting forums. The advent of "Parent and Toddler" spaces has brought with it an alarming picture of the true nature of public spirit. I don't think there is a single mother who hasn't either had to struggle with a buggy/car seat/unwieldy toddler in a "normal" car parking spot because there are no parent and toddler spaces left. The distress this causes is bad enough, but then salt is rubbed in the wound when you see the single man (or woman) jumping back in the badly parked car in the designated space. Not a toddler in sight. Not even an older child. If you dare to take them up on this, you are more often than not met with a barrage of expletives - I have been told that "I can park where I (insert expletive) like" and that "it's not my problem". I've also been told that I got my own parent and toddler space so "it's none of your business". Of course, the stores don't make it any easier for parents as the parking restrictions are rarely (in fact, I'd go as far as to say never) enforced. So they get away with it, again and again.
Disabled parking bays are another issue altogether. We are fortunate that Bea is still young so we will often use a parent bay when out and about. But James is getting older and I don't want to use the parent bays all the time. As we are in receipt of the highest mobility component of DLA, we are entitled to a blue badge. Our excuse for not having sorted this out is that we need photo booth style pictures of James, and we'd have to catch him first! I have never actually used a disabled bay, but am sure that once we have the badge it will be very useful. So I am mindful of the issues that badge holders have - if it frustrates parents to be unable to park in designated bays, imagine what it is like for blue badge users (here I am referring to the legitimate holders - it's quite frightening to hear the statistics for the black market value of blue badges and how many fraudulent badges are flying around out there). On a Sunday I take James swimming at the local pool. The car park is usually full, but there are about 5 disabled bays. I have occasionally been tempted to use them, but refrained as we don't have a badge at the moment. I ended up parking quite a way from the pool, which was inconvenient but no huge problem. However, on my way back to the car, I had a double take when I saw the following. A large 4 by 4 was parked over two disabled bays. In the front sat a man reading his Sunday paper and playing the radio. Not a blue badge in sight. I couldn't let it pass and made a comment about how if you are going to be selfish and park in a disabled bay at least to show some consideration and not park over TWO bays. I'm sorry to say that he didn't even acknowledge my comment, let alone move his car.
Not 10 minutes later, I was to experience further frustration at people's selfish, ignorant behaviour. I continue to take James out to a variety of social settings, to help him learn life skills. If I don't teach him these things, who will? Who is going to show him how to hold a basket, fill it with staple food and take it to the checkout? Who will teach him to empty the basket onto the conveyor belt and hand over the money to the checkout assistant? Unlike Bea, he doesn't naturally learn from observation, he needs every step taught to him, over and over again. Recently, he has started to hold a basket, which hasn't come naturally to him. He holds it awkwardly, allowing items to spill out if not reminded to hold it upright. He walks with a stumbling gait, trying to maintain his balance with the basket. One thing I noticed early on in James' development was that he would walk right over our feet without noticing they're in the way. He has continued to bang in to things, to walk into people, not looking where he's going and unaware of obstacles (he has even walked into lamp posts and letter boxes). In the supermarket today, teetering up the aisles, he must have looked quite strange, wearing his rucksack with reins and screeching to himself to help keep calm. I tend to be on my guard, making sure he doesn't bang in to other people and keep him out of the way of obstacles. Occasionally, I take my eye off him momentarily, whilst I pick something from the shelf or look around for where the sugar is hiding. As we walked along, James lolloping forward, me hawk eyed and careful, I was rather shocked to hear a comment, clearly aimed at us. "(precede with expletive), a "sorry" would be nice". If there's one thing I can't bear, it's people who make comments behind my back, quick to pass judgement and not taking the fuller picture into account. I couldn't hold back and let her know that James is severely disabled and was doing very well, and that she should be the one apologising. And followed up with a request that next time she makes her comments to my face rather than behind my behind my back. I doubt she'll change, usually the ignorant don't want to be educated.
Thursday, 5 March 2009
Hidden costs
So where does this money go? What are these extra costs? Well, some of them are hidden, results of the impact of a disability on the whole family. As I write yet another cheque for more school jumpers (he's chewed through around 6 so far and that's only in one term....) I tot that up - 18 school jumpers a year at £10 a go = £180, most parents I know buy 4 or 5 for the whole year, so he's just cost me an extra £130 or so. Add in the polo shirts I had to buy at M&S yesterday and you probably have another £40 excess cost. He's chewed through a second coat this month, I don't think many people buy three coats a year for their reception age child. He usually comes home from school with a full change of clothes on, so there's twice the amount of washing to do, and that's without the extra sheets and pyjamams that often need changed overnight. Luckily, nappies are now provided free, but wipes are provided by us. I wonder how many people have bought 6 copies of the Mr Benn DVD? James has a "thing" about spinning the discs in their cases and then biting them so they're no longer usable. At first glance, we have a sizeable DVD collection, but many of them are duplicates or triplicates, and a lot of them are unusable. We haven't actually got the time to sit down and go through them, workign out which to throw out and which to keep! When we go on holiday, we have to rent a three bedroom property as James has to sleep on his own. So even though we're a family of 4 we are looking at properties aimed at families of 5 or 6 - that's another £200 or so excess. Then there's my work - I am back one day a week, but because I no longer work out of hours, my pay has been cut dramatically. In fact, my loss of earnings is probably over the £26000 mark, so every penny I've mentioned so far is in excess of this. Our childcare costs are higher than if James were not autistic, and our childcare choices are limited so we're stuck between a rock and a hard place. For James to access any extra curricular activity, he has to be accompanied by either myself or my husband. If Bea is coming too, we all have to go, which is obviously often the point of family trips, but sometimes I would like to be able to take the children on my own somewhere.... Many families buy in extra therapy to complement (or in some instances even supplement the lack of) resources provided to them through health. I used to take James to music therapy at Nordoff Robbins in Gospel Oak - a journey of about 12 miles taking 45 minutes on a good day, a fair amount of costs incurred in petrol and wear and tear on the car. The sessions were £20 and I also paid a babysitter to look after Bea, which was £30 for the afternoon. So for a 30 minute session, it cost me £50 plus petrol... Multiply that by 30 weeks and we're talking about £1500 per annum before petrol. This is just the tip of the iceberg.
Then there are the emotional costs to us as parents. Those are not financially quantifiable, but have an impact far beyond emotional wellbeing. The impact on our wider life can't go unmentioned. If James wasn't as disabled as he is, it is likely that my husband would have climbed the career ladder faster and we would be far more financialyl stable. We're not struggling, unlke many other famlies with disabled children, but things would be easier if we had a bit more security. That said, it is perhaps ironic that around the time that James was diagnosed he was toying with applying for posts in the financial sector and had he been successful, he could well have been at risk of unemploymnet now, so James may have brought hidden costs, but perhaps he has brought some hidden protection.
Wednesday, 4 March 2009
And it all comes tumbling down....
And then the bombshell............
At the moment, the children go to a childminder one day a week. There are actually two childminders working together, so there is always an extra pair of hands and extra support. This is essential when working with James if there are lots of other children around, as he does get a wee bit wild. So when we were chosing childcare this was really high on my list of priorities. Luckily the pair we found also had a lot of experience with children with disabilities. It felt like a huge weight off my shoulders when I rang and heard about their experience and set up. Unfortunately, they are not working together after Easter, and this is going to mean James can't be dropped off there - the bus drops him at 330 and there is another school pick up happening then. As he goes to and from school on council organised transport there is no other way of getting him to the childminder a bit later. So I'm back to the drawing board.
It's rather ironic, as I am on the steering group for Harrow's "Aiming High for Disabled Children" initiative. This is a government driven programme, facilitating the provision of short breaks for children with disabilities and their parents. It includes provision of things like after school clubs and chilcare facilities. So I'm sitting on the group, trying to take things forward and improve facilities for other families whilst my own childcare arrangements are in tatters. How ironic.....
Monday, 2 March 2009
Always expect the unexpected
Last week my parents came to visit. They haven't been here for nearly 3 months, which is a long time when you're only 5, and could well be long enough for James to forget them entirely. After all, he's not with them that frequently, so their bond is one that perhaps doesn't come naturally. In addition, both my parents find James difficult to deal with - they love him unconditionally, and try to engage with him, but there comes a point when you stop trying. They're not there, by any means, but the lack of reciprocity gets tiresome and you feel like you've explored all avenues. I often go through periods where I am less focussed in my efforts to engage with James, usually coinciding with periods where I feel overwhelmed, depressed and miserable. I actually need to be making all this effort, because every now and again he surprises me, and it's then that I can reap the rewards for my efforts.
My parents arrival was one of those moments - the minute the doorbell went, he ran there, helped me open the door and how I wish I had had a camera the moment he saw my parents through the glass door. His face lit up, he started grinning from ear to ear, and kept chanting "Nene, Dede, Nene, Dede, hello, hello, hello!". He was like a wind up doll, except he kept on going. He climbed all over my father, demanding hugs and smiling and stroking his face. He was very affectionate with my mother too, which made her day (historically, he has always been more free with affection towards my father, so this was very touching for my mum). He does make strong bonds, and other people really are important to him. So I am bolstered in my efforts and will keep doing all I need to do to support James and help him progress.
Another "unexpected" moment came when we were at Thames Valley Adventure Playground on Saturday. As we were getting ready to leave, I gave James his coat, slightly absent mindedly. I haven't ever seen him put a coat on without help, so you can imagine my surprise when he took it, looked at it carefully, worked out which arm to put in first, hooked it over his shoulders and popped his other arm in! Wow....
So always expect the unexpected, without that you will miss many an opportunity.
Friday, 20 February 2009
Toilet woes
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
Topsy turvy
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.....
