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An eventful afternoon today. Despite an appointment with Kesia in May which had at least given us a diagnosis of Asperger's syndrome, she had and has continued to have increasing problems in life and at school. An emergency appointment was sought and unfrotunately cancelled by the hospital and so we have waited with a lot of anxiety to see a doctor with enough experience to be able to offer some practical help. With year 6 looming for her in September and the school at their wits' end faced with a little girl in such distress we really had all our eggs in this basket. No pressure for the doctor then!!!
The lovely Dr S was brilliant. As much as she may not have connected with Zack all those years ago, her manner with Kesia was wonderful. I love the fact that she chose to speak to Kesia directly, before speaking to me. Kesia responded beautifully. It is very rare to see "Kesia" without a mask on. She goes through life largely as a construct of the people she feels she can be in any given situation. So we often see "Kesia the big sister", or "Kesia the carer" or "Kesia the bratlet", "Kesia the totally mad hyperactive giggler", "Kesia the good girl" etc... "Just Kesia" is a rare creature indeed, but how I love her!! Amazingly, she appeared in that appoinment room. She was clear and direct about her feelings regarding school (pooey) and the things she finds difficult (too many to mention here). She told the doctor how much she likes maths, and that writing is fine if she knows exactly what she must write. The noise and number of people cause her untold distress and she hates being in the classroom... So we came to some conclusions: it is clearly terribly important for Kesia to be able to go to school without suffering the anxiety and distress that she has done recently. The doctor feels that step one is to provide her with a clear, visual and explicit timetable for the whole of the first half of term. Included in this would be a progressive and slow return to school, eg 2 hours a day for the first week, followed by mornings the next week if the first has gone well. She needs to know what will happen for some time in the future in order to be able to prepare for it. The doctor is extremely enthusiastic about Kesia riding so that will be put into the timetable. She is hoping that funding will be found for an emergency teaching assistant while we go through the statementing process, and also feels that the school I had visited would fit Kesia extremely well. She is also referring Kesia to occupational therapy to help with her sensory issues and has reccommended ear defenders for Kesia's sensitivity to noise at school. One of the big and rather momentous decisions is that we should try some medication to help lower Kesia's anxiety. I find this a little difficult... we went down this road with Zack and it did not work. Mostly I remember reading the notice in the medication box and reeling. BUT... it might be effective and anything that can help her is worth trying. I finally feel that Kesia's difficulties have been recognised by someone who has the ability to help her. We will go and pick up her medication in the next few days and plan to start her on it about a week before school starts. In the meantime, we keep going. She is much much better since school stopped, though this by no means life is easy. Panic attacks are frequent and her obsessions are ruling our lives a little. But we managed our holiday in France with some really lovely moments, and I've even managed to buy her some new school shoes that she is willing to wear! Small battles won do leave me feeling rather happy! There is a long way to go and hard work ahead, but I now have someone at the end of the phone who can set the sails blowing a little! To-Do list: DLA form (oh glory, here we go again) Pick up medication Get statementing paperwork ready for the 5th September Somehow get the term started for her (though I think that will have to wait until the 4th September meeting...) I'm sure many of you know the feeling of a day that simply needs to end. Something happens... if you're lucky it'll happen at the end of the day, less lucky and it's minutes after you wake up... and everything simply implodes. You feel stuck and lost and if you're truly lucky you can dimly remember that all you need to do is wait because things will be better tomorrow. I'm making this the mark of my sanity, actually. If I can remember that little fact, I can make it through the day. Just now, at 7pm I'm beginning to feel better because today is finally at an end.
This morning was fairly average, though to be frank I think that puberty hormones are raging in my dear little girl. The rage that has been coursing through her is quite something to behold!!! So... one child who has already spent two hours worrying (small word for a big emotion) about school is also angry as hell and hey, Mum's such a convenient punch bag (emotional, not physical thank goodness). And another child who may well be picking up on the stress but is being a brat over nothingness and yelling at me - apparently I am a meanie and an idiot. Well, normally I would take all this in my stride, calm one and be unmistakably cross with the other. Today, I was human. So I was quite hugely tired and frustrated with the constant, inescapable anxiety of child one, and not as patient as she needed me to be. And I snapped at the other - I don't like being called names. I didn't like it as a child and I like it less as an adult - especially when it comes from my children. We managed to get into the car and found a parking space. Tom out and in his power chair - yay!!! Kesia... stuck and refusing to move. Once more I found myself going towards the human option. The normal and only viable option was to stay very calm, talk gently and slowly coax her out (imagine a cat stuck up a tree). The human option was to raise my voice, get frustrated, and eventually to go and get her... Which wasn't the right thing to do, but hey - that's where I ended up today. The inevitable followed: I had to keep hold of her to stop her running away and the hand over to school staff was simply ugly. And because I was still being human, I left. As I left, any semblance of coping left me. I couldn't breathe, I couldn't talk. Argh, emotional pain just plain hurts!!! So... On the basis that expanding on that last statement would have me in a state (not to mention those of you who know me also tend to get upset if I do), I leave a blank. The episode of the morning emptied me and exhausted me and since 8:55, I have simply been desperately waiting for the day to end. Here we are! It's 7:20pm. I've had dinner (thank you Nick!!!), Tom is in bed (after a phenomenal tantrum this evening) and Kesia will be on her way in a few minutes. Today is over. My bestest friend in the whole wide world is about to pop over for a cuppa, and already I'm properly aware that the weight that has been hanging over me all day is not a forever thing. Tomorrow will be better. So long as I can keep those pesky human reactions at bay, I'll be fine :) It's been so long since I've had the space in my head to sit down and write. The need to spin the jumble in my brain into yarn that can then be knitted into some kind of sense, beauty or use for moving forward has been increasingly pressing but each time I reach for the keyboard (pens are really not my thing) the page stays blank and the jumble stays put.
The specifics of life are simultaneously dull and traumatic and I have a tendency to feel as though I am constantly whining. And yet, as much as I would like to launch into the part of all of this which will start to be helpful, useful (to me I must selfishly add though any help it offers those in the big wide world is happily given), I am forced to admit that this will probably only happen once my ranting is out... Deep breath, here goes... Where to start? Each time I see my lovely therapist I end up talking about one or other child... Today, Kesia is my starting point. In the last few weeks my darling darling girl has quite simply begun to fall apart. Those of us who know her well are aware that this process started a long time ago (by which I mean well over two years), but I'm fairly sure some teachers at school think that there was a momentous trigger about a month ago. Certainly since then she has missed a lot of school (missing lessons doesn't seem to mark the staff as much). She feels ill. Pretty much all day, every day. She doesn't sleep despite melatonin, and although the doctor suggested she might need two tablets she refuses to do so. She is so terribly worried about everything that goes into her body: that she might be allergic, that the dose might be wrong, that she might be poisoned.... etc, etc, etc... For a number of months now the morning routine at school has been for me to walk her to the "blue room" (inclusion manager's office/teaching room). Separation is deeply traumatic for both of us. She starts to shake and cry, regularly grabbing onto me in desperation. Screaming (serious, loud screaming) is commonplace and running away is also frequent. It had become quite normal for her to be restrained by one or two members of staff in order for me to be able to leave the school. How awful, deeply deeply awful that this became normal. That we all accepted it as the way things were. And that if she settled within half an hour this way that things were was acceptable. My daughter is ten years old. She is extraordinarily intelligent, caring and understands right from wrong. She desperately wants "to be able to go to school like everyone else" (her words). A few weeks ago I had to carry her over my shoulder to get her into school. Two members of staff took her from me as she was screaming at the top of her lungs, her dress hitched up to her waist. She was not angry, nor was she defiant. She was simply, excruciatingly terrified. And that was my moment. The moment at which as a human being nevermind as a mother, I said STOP. There is to be no more physical restraint. We must ALL begin to acknowledge that my beautiful little girl is mentally very unwell, as a result of her difficulty to manage the world. For years the possibility that she may be on the autistic spectrum was denied. We have a diagnosis now of Asperger syndrome. In the last few weeks she had spent one week in the blue room doing the assessments that all children were doing. By removing her from the classroom she was able to excel in all the tests. The next week saw a move back to the classroom with a named adult to support her throughout the day. Picture timetables were put in place and specific staff assigned to her. Her stress levels were extraordinarily high but she managed - all but the mornings. The running away is getting worse, and she hurt her hand accidentally one morning - because how do you contain a child who is so distressed that she will launch herself from one side of the room to the other? Sleep has been getting worse, and she has increasingly frequent nightmares. On Sunday we went to the New Forest to celebrate Zack's birthday. It was a lovely outing and Kesia worked so hard to simply hold herself together. The trip itself is a source of huge stress. The restaurant was simply painful to her as she found it so full of overpowering smells, unbearable noise and so many people... Leaving Zack was traumatic as she misses him so much and had not been able to spend much time with him. By the time we got home she had had as much as she could take and went into meltdown. This doesn't happen too often with Kesi. She is more likely to shut down, curl up in a ball on the ground and be unable to speak or respond to anybody. This was full blown meltdown, banging furniture in her room very loudly, shouting incoherently and banging, banging. We are quite good in our house about letting such things happen: on the whole I'm much happier for them to bang furniture than each other or themselves. But when this rhythmic, implacable noise has been going on continuously for fifteen minutes, my sanity begins to fade... Between the two of us, Nick and I were able to bring her back. There was no question of being cross with her - she had done incredibly well and simply run out of resources to handle her anxiety and stress. A restless night followed and it took no internal conflict to make the decision that she was not well enough for school. Today is Thursday night. Kesia was home Monday and Tuesday. Wednesday involved a school trip and we had two appointments at GOSH for Tom. With school, we decided it would be better for her to come with us. Wednesday morning was by far the calmest we have experienced with Kesi for weeks. She had known about the plan since last week and there were no questions about what was happening. At around 11am she suffered a massive panic attack: she became convinced that she couldn't breathe, started shaking and became very pale. All due to a trip on the train to London. We made it. There, through the appointments, and back. In one piece? I'm not sure. I'm not sure when Kes was last in one piece anyway. The dreadful thing is that we have all become accustomed to her state of mind and taken it for granted that it is simply the way she is. Oh, and the usual "she'll be alright" thrown at me by other mums and teachers at school. I would take a leap into the unknown and guess that these mothers have never experienced their child in that state. Today Kesia went back to school. Not because she was feeling better. I am stuck in a netherworld that makes me decide from day to day whether she is well enough for school or not, without actually giving me the responsibility to make that decision. I know full well that the system will send out the "educational welfare officer" to my door to remind me of my legal responsibility to get her to school. In one sense this is frankly the least of my worries. But because I know how these things work, I also know that I need to work with the system as much as possible. I also need to give Kesia the right message. This morning, aside from her very real anxiety and tiredness (she has been awake since 3am due to a nightmare), she added a level of very normal pubertal strop and told me that she was not going to school. My children know full well that they do not get to decide whether or not they attend school. There is a simple rule that if they dictate, the opposite happens. So as soon as those words were out of her mouth, there was only one possible course of action - to school we went! I also knew that she had wanted to try to get into school today. I was with her till 9.20. The separation was as ever, painful and she ended up running away and even got out of the school buildings. My morning was not especially peaceful. I went back into school to accompany the choir as I usually do on a Thursday, to be met by the inclusion manager and my sweet girl. She was shrivelled, in tears. Miss B told me that half a day was enough. Kes had done so well, but it was time for home. Tomorrow is officially a half day. As I write this, I become far more aware of the extent of the emotional trauma that we are all living, day by day. With a somewhat wry smile on my face I'm also thinking that in the time that all of this has been happening with our precious daughter, we have experienced a rollercoaster with regards to Tom's education that is far from over. Zack's annual review (for his educational statement) is upcoming next week, though I do not anticipate any unexpected problems there. It's all a little overwhelming, but I have to remember that despite everything we are still standing, and there are still smiles. We are preparing for a number of battles which will have to be fought if our children are to get the fair start to life that they deserve. Our definition of childhood is not quite standard. But as much as I am happy to stretch that definition, I have reached the limit of what I will allow Kesia to endure. She has had an extraordinary childhood to date, but one that has brought her benefits as well as tribulations. Her mental health should not be in jeopardy, and the taboo that is so strong regarding children's mental illness cannot be allowed to stand between her and peace of mind. Happiness is a step too far just now... let's aim for peace. I'm left with the following query: Can it be that others, professionals who see my child briefly, professionally, know his or her strengths and weaknesses better than I do?
Sanity answers no, of course not. Emotion questions. Zack home notes: half term, June 2012
I am so proud of Zack! We have had a very good half term and Zack has made regular and considerable effort to follow the house rules and join in with family activities. After a weekend on his own with his grandparents, we spent a family day there before coming home on Tuesday evening. On Wednesday we took the van to have its MOT and went swimming. Zack pushed Tom’s wheelchair very kindly and was really considerate in the pool towards both Tom and Kesia. We stayed in the shallow end due to Tom’s lack of swimming skills and Kesia’s anxiety and at no point did Zack complain or try to go off on his own. He dealt with the crowds and his siblings’ issues very well and it was lovely to be able to rely on him for a little help. He did suffer badly with allergies after swimming and found the wait at the garage difficult but actually followed my directions remarkably well. Thursday was supposed to be a special day for Zack when a carer would have taken him out to the cinema. Unfortunately this was cancelled at the last minute. Once again, Zack surprised me with the maturity of his reaction. After a quiet morning, we braved the rain to go to Tesco (the promise of Ben and Jerry’s ice cream overcame Zack’s reluctance to leave home and laptops!!). I sent them to shower once we got back and we had a pyjama day. Zack planned a Wii tournament for the four of us which gave us an afternoon of great fun. He won all the Mario kart games, but was rather poor at bowling. I loved how well he took the ribbing I gave him about losing (in a bid to make losing less important for Tom and Kesia)... he was really lovely. We went out to Epsom on Friday as I needed to prepare for Kesia’s birthday party. Zack was not happy about going at all, but despite some defiant “I am not going out”, he actually came along pretty easily. There were a couple of difficult moments, but he navigated his frustration well and none developed into incidents. The afternoon saw us finishing the Wii tournament. Kesia was very difficult to be around, but Zack did not rise to the bait of that frustration and did really well. Saturday marked a big day for us as a family. We drove to Alice Holt Forest and went on a family day out cycling. The loan of a bike trailer allowed Tom to join in, and Zack and Kesia really enjoyed biking. Zack did a very good impression of a teenager for a good part of the trip - lots of sulking about the hard work of the hills, but it went really well. There was one minor incident during which he became very angry and rude, but it passed fairly quickly. Sunday has been a quiet day - preparing for school :)
Much as I love computers, I do hate their ability to crash and lose the three paragraphs I have just written!!!
How to thank the outstanding team at Post Pals?? These amazing ladies, most of whom are bed bound due to illness nevertheless seem indefatigable in their efforts to make us smile. Thanks to them, the children bound to the door whenever there is a knock or the postmas becomes visible. Not only do they work tirelessly to maintain Post Pals, but it seems that year after year they dream up yet another idea to make our children grin, smile and laugh. In the last couple of months we have received around 18 cards and letters and four parcels!!! I especially love the scheme that pairs a volunteer with a child to ensure that regular post is received. Tom loves D's letters and can't wait to find out if she has been back to France as he is quite keen to hear more about the chickens there, and Kesia simply loves Emma (loves her letters too, but actually despite never having met, Emma is clearly a loved one). The Valentine's cards were lovely, and my three were mesmerised by the question mark inside the Post Pals ones – a lovely sight. I cannot forget to mention the very literate doggies who write to Tom and Kesia. Percy the Poodle continues to enchant Kesia and Tom adores letters from Izzy – especially all the pictures! Dottie the Dalmatian is near and dear to our hearts, and we have a wall in the playroom dedicated to her beautiful cards. And our regulars: Wendy's wonderful hand made cards always enchant as they picture the specific interests of each child, and Maria and Michael send lovely chatty letters. To top it all off, I just received a chocolate lollipop and a Mother's Day card from the Post Pals team – my first of the year! I feel so cherished, thank you. And so to update you all on my boy Tom! As ever, it is difficult to separate one child from the other, as my life bounces from one little crisis to another. Zack continues to do well at his residential school though Asperger's syndrome lives with us daily – it's always a challenge to keep up with his obsessions and imaginary worlds!! But I am more grateful than I can say that I no longer worry about him daily. My two little ones are a different matter – though we are rarely in acute situations, our daily life is coloured by illness and disability and the stresses of this show up in sometimes unforeseen ways! Tom is back on growth hormone injections, and is growing! His little legs are covered in bruises, and I continue to try and persuade him to use his bottom without success. His godfather (who is diabetic) did tell him that “the bum is best” and hurts least, but Tom remains unconvinced, leaving me with the unenviable task of finding an unbruised square centimetre of thigh... He is remarkably resilient and makes very little fuss so long as we keep our deal of a special bead onto his Beads of Courage string each Sunday. In fact, I think he finds his medication worse than the injections!! He has been finding school increasingly tiring in the last few weeks, and I suspect that he will need a few days off shortly. Treading that fine line between normality and care is something I find especially difficult to do with Tom as he tends to charge through life until he collapses. A recent assessment showed us that while his IQ is in the normal range, he has significant problems with working memory and processing speed, making learning difficult. School is an ongoing issue which I hope we will resolve in the next few months. We are extremely fortunate to have a school which takes very good care of its special needs pupils, so I'm sure we will reach a good result! Feeding clinic starts tomorrow... I'm nervous, but quite confident that it is a good thing to embark on. I've been managing Tom's feeding problems alone for five years now and it's high time I had some support with it. Whether we will get him off the tube, I don't know, but I can at least be certain that we are being helped by the right people. My little girl continues to struggle with life. We are ending the psychotherapy as it really is not helping her in her daily life. The issues go on, and we need to pursue some kind of help for her, but clearly therapy was not right for her – at least not there and not now. I have to say I am relieved that these twice weekly trips will stop – they have been traumatic for quite some time now. And then I suppose, there's the parents. Due to a silly mix-up, Tom has not been to the respite centre for a couple of months now. It's very much at this sort of time that I come to realise how badly we need that respite as a family. Nick (Dad) has long days at work, and the weekends need to feature at least some periods of calm and peace for him to be able to function both at work and as a Dad. Unfortunately, the lack of respite has led to very fractious children, neither of whom can control their reactions or emotions very well... leading to many many tantrums, and very fraught parents! I will be ever so happy when April comes round and normal fortnightly trips to Cherry Trees can resume for Tom – he does so well there, and Kesia and Nick can get that calm and peace they so desperately need! Not to mention my fortnightly garanteed night's sleep! As successful as the modified "Southlands Plan" was for Kesia, I have been wracking my brain as to how to adapt it for Tom. Whereas my two eldest children are intellectually very quick and socially and emotionally extremely challenged, Tom is almost the opposite. He understands emotions very well, but struggles with memory and understanding of logic... Finally, pushed to the edge with very challenging behaviours, I had the stroke of inspiration that had been lacking! In the hope that this may be of help to others, here is the document I have created... Below is a printable chart that I laminate to help him chart his progress. As he earns a tick, his marker (the motorbike) moves to the next blue square with the aid of blue tack... Last night, Nick whispered to me gently, "What kind of magic dust have you sprinkled over Kesia?". Baffled, I asked him what he meant. He was incredulous as he remarked that she had slept beautifully two nights in a row! (Can you sense the underlying implications... we have been battling with sleep problems for about two years now! And have tried many strategies!)
"I made her a sleep book! I showed you!" In a nutshell. It turns out I DO know my kids quite well, and I have a reasonable knack with finding solutions. This makes it so much harder when I need to seek help for them, and those new people don't listen!!! Anyway... Kesia has been enjoying night time foods high in tryptophan ( a sleep inducing chemical). Warm milk with honey and nutmeg is a favourite, and yesterday she cooked some "sleepy muffins" with banana, oatbran and walnut. Tomorrow we will make sleepy oatmeal in the slow cooker for dinner time, and I have a tuna salad recipe ready to go into her sleep book at the weekend. I have added to the photo gallery in my previous post for those who are curious to see what her sleep book looks like! We now have to tread carefully into term time. Zack has now gone back to school and the peace is palpable. But school starts tomorrow, and Kesia has such high hopes that I fear she may crash at the first sign of trouble. I'm so pleased that I finally got some concrete advice from CAMHS about drinking and eating. It was simple and not rocket science, but whether all I needed was direct guidance to help with my anxiety and that rubbed off... goodness knows, but she's done really well over Christmas. With Zack home, her eating has been better too... The worries about statementing, school and CAMHS are clamouring for attention in my brain, and I am trying to keep them at bay, or at least in some sort of order... However... Nick and I have a holiday to look forward to first, thanks to Maman and Cherry Trees... I won't believe it till we're there, and I hope my poor mother can forgive the sorry state of my house!!
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BenedicteJust living, one breath at a time. Archives
October 2012
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