Our Diary
Birthdays and Bouncy Castles
By Paula on 31 Mar 2007
With Christmas seemingly only just over, I can't believe that it is the Easter holidays again already. I used to dread holidays as there is no way that I can manage to go out safely with our two children by myself, but we are very lucky to have a local charity called Coping with Chaos that changed all that. Amongst other things they run at least two activities a day in the school holidays for special needs children and their siblings which for us is a godsend. "Chaos" is a godsend for us as it enables us to all have a fun time and stops us all killing each other by the end of the break!
On Wednesday it was our son's 6th Birthday, as usual it was a manic rush trying to get him ready for school, unwrap the presents and simultaneously play with them. We bought him a Nintendo Wii this year, a much bigger present than we normally buy but it is fantastic for children with special needs. At least that's our excuse! Not only does it keep them active but you do not have to be precise pushing buttons or keys which is difficult - instead you wave a "wand" around to control the game which is much easier. Two of his friends came around for a play on the bouncy castle and fish and chips after school which was great fun and they all seemed to have a great time.
Even though he had a lovely time and the day was a success (apart from me driving off with his homework book on the car roof and losing it!) I felt quite depressed yesterday. I think that the older he gets the more worried I get about how he is going to fit in with society. He has gone past the "cutie" stage as he is now a strapping six year old. The inappropriate and clumsy behaviour that he exhibits is much more obvious now, as a screaming 3 year old is much more anonymous than a much more visible, and noisy, 6 year old. I guess birthdays are a time when you can't help comparing with the skills that other 6 year olds have developed, especially when you receive birthday cards from them with beautiful handwriting.
The never ending diatribe that we used to get when he was younger of "Don't worry he will get there in his own time" has now vanished as we all know that he is not necessarily going to get "there" at all, wherever that is! I love my son to pieces and I would not change him for the world as how he is makes him who he is. However, when I was cuddling him to sleep last night, I did shed a tear or two at the injustice of it all and the fact that I can do nothing at all to change it. All I can offer is love, but I wish I could do so much more.
On Wednesday it was our son's 6th Birthday, as usual it was a manic rush trying to get him ready for school, unwrap the presents and simultaneously play with them. We bought him a Nintendo Wii this year, a much bigger present than we normally buy but it is fantastic for children with special needs. At least that's our excuse! Not only does it keep them active but you do not have to be precise pushing buttons or keys which is difficult - instead you wave a "wand" around to control the game which is much easier. Two of his friends came around for a play on the bouncy castle and fish and chips after school which was great fun and they all seemed to have a great time.
Even though he had a lovely time and the day was a success (apart from me driving off with his homework book on the car roof and losing it!) I felt quite depressed yesterday. I think that the older he gets the more worried I get about how he is going to fit in with society. He has gone past the "cutie" stage as he is now a strapping six year old. The inappropriate and clumsy behaviour that he exhibits is much more obvious now, as a screaming 3 year old is much more anonymous than a much more visible, and noisy, 6 year old. I guess birthdays are a time when you can't help comparing with the skills that other 6 year olds have developed, especially when you receive birthday cards from them with beautiful handwriting.
The never ending diatribe that we used to get when he was younger of "Don't worry he will get there in his own time" has now vanished as we all know that he is not necessarily going to get "there" at all, wherever that is! I love my son to pieces and I would not change him for the world as how he is makes him who he is. However, when I was cuddling him to sleep last night, I did shed a tear or two at the injustice of it all and the fact that I can do nothing at all to change it. All I can offer is love, but I wish I could do so much more.
A word that means so much
By Paula on 22 Mar 2007
I have had one of those weeks when things have really wound me up. Its probably a combination of lack of sleep and the fact that we seem to have had a run of bugs in our house. My son went back to school on Tuesday after his sickness bug and promptly threw up again as soon as he got there. That was the end of my plans to tidy the house. Compound this with the fact that we have my family this weekend to stay so things have been pretty hectic to say the least. One of my friends always says that she can just about cope day to day, but it only takes one little thing to tip the balance. I can feel mine tipping…
On Tuesday we had the assessment done for our home care which, by the way, is going to continue. The only change is that the assessor said my daughter is no longer severe enough for her department so the actual funding may be transferred to the general children’s team. Fine so far, but what annoyed me was the fact that she said that if my son’s condition did turn out to be ASD then that would mean that the situation would change and that of course we could then stay under the children’s disability team’s remit.
Now, at present, we have no diagnosis for our son but the fact is that, whether his behavioural problems are down to his language disorder or are actual bona fide ASD, the traits which he exhibits are classically autistic. Obsessions, extreme routinisation, anxiety in certain situations and clothes intolerance are just some of the things which he and we as a family have to deal with day in and day out. Why should it make any difference if we have the title autism as the end result is exactly the same? It seems that if you do not have an official diagnosis, then your disability is seen as second rate and not as important or impacting on the family. If our son has the magic title of ASD then our home care is assured, if he just has an equally difficult but nameless disability then that does not count as much?!
It is so frustrating not having a diagnosis. Rather than giving a single term when asked, we keep on having to go into the finest of detail with Uncle Tom Cobbly and all, almost as though we have to prove that our children have a disability. There are also no support groups in our area for children without a diagnosis, you feel that you are on the outside looking in saying please can we join your club, are we allowed?
On Tuesday we had the assessment done for our home care which, by the way, is going to continue. The only change is that the assessor said my daughter is no longer severe enough for her department so the actual funding may be transferred to the general children’s team. Fine so far, but what annoyed me was the fact that she said that if my son’s condition did turn out to be ASD then that would mean that the situation would change and that of course we could then stay under the children’s disability team’s remit.
Now, at present, we have no diagnosis for our son but the fact is that, whether his behavioural problems are down to his language disorder or are actual bona fide ASD, the traits which he exhibits are classically autistic. Obsessions, extreme routinisation, anxiety in certain situations and clothes intolerance are just some of the things which he and we as a family have to deal with day in and day out. Why should it make any difference if we have the title autism as the end result is exactly the same? It seems that if you do not have an official diagnosis, then your disability is seen as second rate and not as important or impacting on the family. If our son has the magic title of ASD then our home care is assured, if he just has an equally difficult but nameless disability then that does not count as much?!
It is so frustrating not having a diagnosis. Rather than giving a single term when asked, we keep on having to go into the finest of detail with Uncle Tom Cobbly and all, almost as though we have to prove that our children have a disability. There are also no support groups in our area for children without a diagnosis, you feel that you are on the outside looking in saying please can we join your club, are we allowed?
A Happy Mother's Day
By Paula on 18 Mar 2007
I am sure that it is the mild weather that we have been having, but we seem to be rarely germ free the last month or so. At the moment its Mothers Day and I have my husband and son both asleep on the settee having caught a sickness bug from me. Thank goodness my husband and I are not both ill at the same time! My daughter is Ok at present although, not wanting to be done out, purposefully made herself sick at tea time (one of her party tricks) and then asked for an ice cream! The other week we had the scenario when both kids were being sick at the same time - which one to get to with the bowl first?! It is not so bad now though as at least our son can tell us whereabouts he feels unwell. Until relatively recently he was unable to do this and it was so frustrating not knowing what was wrong with him. He does still have his stock phrase of having a sore back when he is poorly, a reference to his kidney problems, but a little probing usually comes up with a sensible answer. It is always worrying when any of our children are ill, but with our son, because he has to keep his fluid intake up, any vomiting is a worry. You can’t force him to drink and if he is ill he does not want to, but at the same time if his liquid intake drops then he could form a kidney stone. Things are never straight forward are they?
Have got our review this week for our Homecare visits. I am really hoping that they are going to continue as it has been such a fantastic service for us. We get two visits a week of an hour and a half each and in that time an Angel called Heather does all our ironing and cleans the house. This has really taken the pressure off me and if I do not manage to get things done, it does not matter as I know that Heather will help. I am sure that it is a girl thing but I get quite stressed if the house is in a state as for me it is a sign as to how well I am coping. If the house gets too muddled ( a relative thing as it is always muddly to a great degree anyway!) then I can feel my stress levels rising. I always say to my husband, that if I had a pound for every minute that I spent looking for things in a week I would be a millionaire!
Have got our review this week for our Homecare visits. I am really hoping that they are going to continue as it has been such a fantastic service for us. We get two visits a week of an hour and a half each and in that time an Angel called Heather does all our ironing and cleans the house. This has really taken the pressure off me and if I do not manage to get things done, it does not matter as I know that Heather will help. I am sure that it is a girl thing but I get quite stressed if the house is in a state as for me it is a sign as to how well I am coping. If the house gets too muddled ( a relative thing as it is always muddly to a great degree anyway!) then I can feel my stress levels rising. I always say to my husband, that if I had a pound for every minute that I spent looking for things in a week I would be a millionaire!
A bloke thing?
By Paula on 10 Mar 2007
One of the things that my husband and I find the most frustrating is the fact that neither of our children have a diagnosis. Yes, we know aspects of their condition such as ADHD, dyspraxia, cystinuria etc. but whether these are stand alone conditions or part of a wider syndrome we really do not know. Every time that a new behaviour exhibits itself, we are constantly asking ourselves, is this just a phase or is it the start of something new?
As I have mentioned previously, our son is exhibiting some challenging behaviour, being very volatile and frequently aggressive towards anyone who invades his little bubble. Hopefully this behaviour just a phase, but until we get our appointment with the autism consultant, we just don’t know and even then we may still not get any answers. Even though a diagnosis will not make a difference to his behaviour, it will certainly make it easier to understand where he is coming from.
Anyway, I have decided to keep a diary, noting down all the things that he finds distressing or confusing as I know that when it comes to the consultant's appointment. The things that set him off are so iniquitous that I'm sure I will forget most of what has happened otherwise. Today, for example, he had a paddy because I put one type of sauce on his plate before another one - it was the wrong order! Aaah! Why is it that it is the tiny things that seem to produce the most dramatic reactions? Often the big things that I think are going to be a problem completely pass him by. Any answers please?
On a different note, had our daughters hospital review this week and everyone was really pleased with the progress that she is continuing to make. She is getting more vocal and it is so lovely to be able to have a good old chat with her, even if most of what she is talking about is a load of old rubbish! To be able to do this is a real treat and the fact that she actually answers you is great, unlike her brother who seems to have selective deafness. I suppose this could be ASD, or a bloke thing, or……!
As I have mentioned previously, our son is exhibiting some challenging behaviour, being very volatile and frequently aggressive towards anyone who invades his little bubble. Hopefully this behaviour just a phase, but until we get our appointment with the autism consultant, we just don’t know and even then we may still not get any answers. Even though a diagnosis will not make a difference to his behaviour, it will certainly make it easier to understand where he is coming from.
Anyway, I have decided to keep a diary, noting down all the things that he finds distressing or confusing as I know that when it comes to the consultant's appointment. The things that set him off are so iniquitous that I'm sure I will forget most of what has happened otherwise. Today, for example, he had a paddy because I put one type of sauce on his plate before another one - it was the wrong order! Aaah! Why is it that it is the tiny things that seem to produce the most dramatic reactions? Often the big things that I think are going to be a problem completely pass him by. Any answers please?
On a different note, had our daughters hospital review this week and everyone was really pleased with the progress that she is continuing to make. She is getting more vocal and it is so lovely to be able to have a good old chat with her, even if most of what she is talking about is a load of old rubbish! To be able to do this is a real treat and the fact that she actually answers you is great, unlike her brother who seems to have selective deafness. I suppose this could be ASD, or a bloke thing, or……!