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!
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!
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