In the last year J has:
Slammed his door numerous times with such force that the door frame is coming away from the wall! I am considering thre advice of the SENCO to "take the door off"!
Threatened to jump out of the upper window several times and sat on the windowsill, it's winter and the windows are locked but in the summer this is more scary as they are usually wide open.
Damaged his Nintendo 3DS by jumping on it after becoming frustrated by a game (my fault as I was in the bath and didn't realise he had it).
Banged his head during numerous meltdowns and hit himself.
Last week he took a knife from the draw mid meltdown and told me "goodbye Mum" (I got it away from him).
J's school are going to offer support - he is more manageable there with one to one support but less so here at times simply because I struggle to keep on top of everything (crap mother alert).
So I am hoping for a CAMHS referral and help to manage his extremes of behaviour because I feel in the dark when it comes to these meltdowns. Do I ignore them? Do I stay with him? Do I try and cuddle him to reassure which would not be easy?
J's Dad feels that J reacts if I am there but all I can think is that being that out of control during a meltdown must feel terrifying and because of that he NEEDS my presence as a safety net.
All in all I am anxious about his teenage years.
Wednesday, 1 February 2012
Friday, 20 January 2012
Melatonin and sleep.
J can be awake until the wee small hours with ease, he finds it extremely hard to settle down at night and we can still be going at 01.30am on a bad night. A recent holiday with his Dad and grandparents saw an even later 2am before he fell asleep. Not surprisingly I am often exhausted - not least because I need to be awake too as J also LOVES food and thinks nothing of climbing onto work surfaces in order to reach any goodies which might be on the top shelves. The idea of an overtired kid with balance issues (dyspraxia) climbing any height does not bear thinking about. I am amazed that we are not regular attenders of them local A+E department.
So we now have Melatonin 2mgs for J to take an hour before he falls asleep and although it's early days it seems helpful. The first night J took a tablet he fell asleep next to me at 8.45pm and I was in shock, J was under 2 the last time he fell asleep this early. I literally did not know what to do with myself and phoned friends and relatives...."he's asleep...can you believe it"? No they could not either....
So since that first night it has been hit and miss and very dependent on how tired J is that evening. He is still waking to bedwetting but is settling down almost as soon as he is changed. The latest night we have had since he started Melatonin is 00.15am - a vast improvement upon 2am!
So I am going to continue, I have been warned that he cannot take this drug forever and that it's effects may wear off over time but for now I am going to enjoy it and love the idea that on some nights J is getting adequate sleep.
Tuesday, 17 January 2012
Disability Living Allowance and the Welfare Reform.
Like many other parents of children with a disability I am anxiously watching the news with regard to the proposed benefit reforms and the plan to replace DLA.
DLA is not an "out of work" benefit, it is instead a benefit designed to help with the costs of coping with a disability either your own or a dependent's. I have claimed it since April 2009, just after J was diagnosed with ASD. I knew about DLA but had never considered claiming it for J although it can be claimed even if there is no diagnosis. My decision to claim came from the paediatrician who advised I do so as there would be cost implications for J both now in the future. I applied and was awarded Middle Rate Care to reflect the fact he needs frequent support during the day and Lower Rate Mobility to reflect his need for supervision by roads - this means I recieve £267 a month for J - a massive help as I had decreased my work hours several months before in order to support J who was struggling in school and at home. In addition I also recieve a top up payment to my tax credit - all in all I was better off by nearly £450 a month. This allowed me to attend various support groups with J and a special needs centre nearby which ran a "stay and play" group.
So what does the DLA and tax credit pay for?
In my house it simply goes into the pot with my salary to pay the rent, the council tax, the electricity, the gas and to fund extra activities for J. It means I can be around for him to offer him the additional support he needs, he has one to one support in school and finds social situations confusing, he would need the same support in an out of school care setting.
I spend time sorting out social confusions with him, I do homework with him and help him with maths, literacy and other topics. J has mild to moderate learning difficulties, he is not achieving on a par with his peers, only since he started taking medication for his ADHD has he been able to make massive progress in reading - it is a joy to hear him read to me with real meaning and comprehension.
The DLA form is massive - a 40 page form which wants to know everything about the disabled person in miniscule detail. Can they walk, can they talk, do they need supervision, can the disabled person wash and dress themselves or do they need help? What help does the disabled person need? Is it simply supervision and routine or do they need total support? How long does this take in minutes, how many times per day? What about night time? Does the person need support and supervision at night? Who is the GP, who is the Consultant, who can DWP talk to if needed? Can they have the medical records?
The form is so complex that organisations such as the CAB devote time to helping claimants complete the form. J's initial award ends in March this year and the CAB have just help me complete a new one - due to J's sleeping issues and night problems such as bedwetting the advisor said that I should be receiving Higher Rate Care which is a measure of how bizarre the current reforms are. If I receive Higher Rate Care I will be immune from the cuts as carer of "one of the most disabled in society". In fact Higher Rate Care simply reflects the claimants input overnight - a child could be severely physically disabled and yet sleep all night with no issues making them non-eligible for Higher Rate Care - it's utter madness.
So the cuts, ah yes the cuts! As of April 2012, if the reforms go through as the Government wants them to then those on Middle Rate Care will no longer recieve the current level of tax credit top up, it will halve making the average family caring for a disabled child just over £1440 a year worse off. Those receiving Higher Rate Care will see their level of top up to the tax credit increase - remember that to qualify for Higher Rate Care the child simply needs to have supervision and care requirements at night time. In my case it's the fact that J can keep going until 1-2am in the morning and active until about 30 mins before - yet this could make him elgible for Higher Rate Care payments and deemed one of the "most disabled in our society".
There have been massive protests about the reforms as applied to disabled people and finally it appears the protests are reaching the Government - and they are not happy. They are hitting back in turn but it's definitely got them talking - even if I largely disagree with all they say as do many others.
I currently await the response to my latest application for DLA on behalf of J and this time if they award less than Higher Rate for the Care component I will be asking them to justify their decision in writing - under current guidelines J meets all the requirements. In the meantime I will keep writing to my MP and pointing out the issues with the reforms. DLA definitely NEEDS reform - but not in this way and the Government need to return to the table and talk to all the disability groups whose comments have been falling on deaf ears for far too long.
DLA is not an "out of work" benefit, it is instead a benefit designed to help with the costs of coping with a disability either your own or a dependent's. I have claimed it since April 2009, just after J was diagnosed with ASD. I knew about DLA but had never considered claiming it for J although it can be claimed even if there is no diagnosis. My decision to claim came from the paediatrician who advised I do so as there would be cost implications for J both now in the future. I applied and was awarded Middle Rate Care to reflect the fact he needs frequent support during the day and Lower Rate Mobility to reflect his need for supervision by roads - this means I recieve £267 a month for J - a massive help as I had decreased my work hours several months before in order to support J who was struggling in school and at home. In addition I also recieve a top up payment to my tax credit - all in all I was better off by nearly £450 a month. This allowed me to attend various support groups with J and a special needs centre nearby which ran a "stay and play" group.
So what does the DLA and tax credit pay for?
In my house it simply goes into the pot with my salary to pay the rent, the council tax, the electricity, the gas and to fund extra activities for J. It means I can be around for him to offer him the additional support he needs, he has one to one support in school and finds social situations confusing, he would need the same support in an out of school care setting.
I spend time sorting out social confusions with him, I do homework with him and help him with maths, literacy and other topics. J has mild to moderate learning difficulties, he is not achieving on a par with his peers, only since he started taking medication for his ADHD has he been able to make massive progress in reading - it is a joy to hear him read to me with real meaning and comprehension.
The DLA form is massive - a 40 page form which wants to know everything about the disabled person in miniscule detail. Can they walk, can they talk, do they need supervision, can the disabled person wash and dress themselves or do they need help? What help does the disabled person need? Is it simply supervision and routine or do they need total support? How long does this take in minutes, how many times per day? What about night time? Does the person need support and supervision at night? Who is the GP, who is the Consultant, who can DWP talk to if needed? Can they have the medical records?
The form is so complex that organisations such as the CAB devote time to helping claimants complete the form. J's initial award ends in March this year and the CAB have just help me complete a new one - due to J's sleeping issues and night problems such as bedwetting the advisor said that I should be receiving Higher Rate Care which is a measure of how bizarre the current reforms are. If I receive Higher Rate Care I will be immune from the cuts as carer of "one of the most disabled in society". In fact Higher Rate Care simply reflects the claimants input overnight - a child could be severely physically disabled and yet sleep all night with no issues making them non-eligible for Higher Rate Care - it's utter madness.
So the cuts, ah yes the cuts! As of April 2012, if the reforms go through as the Government wants them to then those on Middle Rate Care will no longer recieve the current level of tax credit top up, it will halve making the average family caring for a disabled child just over £1440 a year worse off. Those receiving Higher Rate Care will see their level of top up to the tax credit increase - remember that to qualify for Higher Rate Care the child simply needs to have supervision and care requirements at night time. In my case it's the fact that J can keep going until 1-2am in the morning and active until about 30 mins before - yet this could make him elgible for Higher Rate Care payments and deemed one of the "most disabled in our society".
There have been massive protests about the reforms as applied to disabled people and finally it appears the protests are reaching the Government - and they are not happy. They are hitting back in turn but it's definitely got them talking - even if I largely disagree with all they say as do many others.
I currently await the response to my latest application for DLA on behalf of J and this time if they award less than Higher Rate for the Care component I will be asking them to justify their decision in writing - under current guidelines J meets all the requirements. In the meantime I will keep writing to my MP and pointing out the issues with the reforms. DLA definitely NEEDS reform - but not in this way and the Government need to return to the table and talk to all the disability groups whose comments have been falling on deaf ears for far too long.
Saturday, 3 December 2011
First Reconciliation
Today J made his first reconciliation - that's "confession" to anyone not Catholic. It is much less austere than it sounds and merely involved J having a chat with the lovely FrB about something he wanted to say sorry for. First though we needed some "getting in the spirit" of things which is where Fr B often comes into his own - and today was no exception!
So we had The Parable of the Lost Sheep and Fr B ever a performer announced to the waiting congregation that he and SrC had gone into buisness together as "sheep farmers"! Apparently they had a "small flock" of about six sheep in the garden but...one of them kept wandering off.
There then followed a small session with the children suggesting ways in which the sheep could be found before FrB said that in fact the lost sheep was in the church and could the children find it. Everyone looked round and high up on the mezzanine level was a cardboard cut out of a sheep with a sad looking face. A "shepherd" was dispatched to fetch the sheep back down to rejoin the flock, and by the time it reached the front of the church the "sad face" had been replaced with the attachment of the cheesiest grin you have ever seen - the illustration above is the nearest I can get to it but it tickled J who spent the rest of the service giggling whenever he looked at said sheep.
There then followed discussion about the significance of this story and Jesus being called "The Good Shepherd" who would never turn away anyone or judge them but simply welcome them back.
J's "confession" is private so I won't repeat it here but I know what it is and I am proud of him for finding the strength to talk about it. Last week he had to write down what he wanted to discuss and took this with him to see the Priest. After the children had been up there was a public shredding of all the "confessions" to signify absolution - I guess fire would have been too risky on health and safety grounds. I like the idea of "getting rid of old problems"and recognising that although they may still be things we need to work on, we can learn from experience and spend time trying to be more mindful.
After J made his first reconciliation I decided to make mine - not being Catholic I have never done this before so it was a first for me too. I had a lovely chat with another Fr who was really great and very sensible regarding what I wanted to share. After this I prayed with him and left feeling much calmer - J was incensed that I had been such a long time - who knew I'd been so bad lol.
Fr B then ended by producing his own confession - an A4 sheet of paper covered with typed comments - he reminded the children that he also got things wrong at times.....then opened up the A4 page to show it covered 5 A4 pages taped together - it was as tall as he is. J thought this was very funny - likewise he was encouraged to shred the "confession" and "let it go" after which he did a lap of honour to great cheers around the church!
It was lovely and I have sent an email to Fr B to say a big Thank You for making it all such fun and appropriate to the ages of the children. I said a special thank you for his understanding of J and accepting that he might need extra support.
Lovely day.
Wednesday, 30 November 2011
Sense and Sensibility!
Thank you to my lovely GP for her ever so logical advice and support
"No don't resign from your job, it might be the right decision long term but don't do it while you feel like this"
"Get some advice from your Human Resources department about various types of leave".
"No I understand that you don't want to be the person who is always off sick but this is why you need advice from your HR and a look at how you would manage financially if you did leave work for a period of time".
"What you need is some breathing space while you look at your options".
"I think increasing your hours is not something you can commit to given the needs of J for care".
So I came away feeling more settled, she is quite right in saying that NOW is not the time to be making any decision about resigning or not - even if resigning DOES turn out to be the right thing for both J and I.
As far as J goes there have been more difficulties, primarily it seems to boil down to the level of work expected from him now he is in Year 4 and I will have to go in tomorrow morning to have a chat with his lovely LSA who is so good with him to see if we can find a way through this between us all.
It has all been very demanding emotionally for J and I am starting the process of looking at future schooling once Christmas is out of the way.
The schools I will be looking at initially are the senior school which J's school feeds into, it's mainstream and small for a secondary. If J was to go here then he would attend with many children he already knows. My only concern is that as time goes on he will become socially isolated among his peers.
The other school I will look at is a non mainstream school which has been suggested as suitable for J, this is a special school which takes children who have various forms of learning difficulties. It is smaller than the mainstream school and has a higher staff to pupil ration along with extra input from various professionals which the meainstream schools just don't seem to get. On the negative side, waiting until Year 6/7 to try and get a space for J is not really an option as it will be oversubscribed by then so if J's future educational and social needs are to be met there then I need to prepare for moving him at the end of Year 4 or 5 and NOT wait until Year 6 when every other child with SEN is also being put forward.
Of course the best preparation for life in mainstream society is a mainstream school, however if J is likely to experience social isolation there then he might well do better attending a special school and building up friendships with children who have similar issues to him.
It's a big decision and until I look round to see where J might best "fit" then I will be mulling it round in my head.
J just keeps saying "I want to go to another school" but this is due to his current difficulties with Maths and I think if we can sort that out then he will be happier again.
"No don't resign from your job, it might be the right decision long term but don't do it while you feel like this"
"Get some advice from your Human Resources department about various types of leave".
"No I understand that you don't want to be the person who is always off sick but this is why you need advice from your HR and a look at how you would manage financially if you did leave work for a period of time".
"What you need is some breathing space while you look at your options".
"I think increasing your hours is not something you can commit to given the needs of J for care".
So I came away feeling more settled, she is quite right in saying that NOW is not the time to be making any decision about resigning or not - even if resigning DOES turn out to be the right thing for both J and I.
As far as J goes there have been more difficulties, primarily it seems to boil down to the level of work expected from him now he is in Year 4 and I will have to go in tomorrow morning to have a chat with his lovely LSA who is so good with him to see if we can find a way through this between us all.
It has all been very demanding emotionally for J and I am starting the process of looking at future schooling once Christmas is out of the way.
The schools I will be looking at initially are the senior school which J's school feeds into, it's mainstream and small for a secondary. If J was to go here then he would attend with many children he already knows. My only concern is that as time goes on he will become socially isolated among his peers.
The other school I will look at is a non mainstream school which has been suggested as suitable for J, this is a special school which takes children who have various forms of learning difficulties. It is smaller than the mainstream school and has a higher staff to pupil ration along with extra input from various professionals which the meainstream schools just don't seem to get. On the negative side, waiting until Year 6/7 to try and get a space for J is not really an option as it will be oversubscribed by then so if J's future educational and social needs are to be met there then I need to prepare for moving him at the end of Year 4 or 5 and NOT wait until Year 6 when every other child with SEN is also being put forward.
Of course the best preparation for life in mainstream society is a mainstream school, however if J is likely to experience social isolation there then he might well do better attending a special school and building up friendships with children who have similar issues to him.
It's a big decision and until I look round to see where J might best "fit" then I will be mulling it round in my head.
J just keeps saying "I want to go to another school" but this is due to his current difficulties with Maths and I think if we can sort that out then he will be happier again.
Monday, 28 November 2011
Advent and all that....
So we are rapidly approaching Christmas and I am at a crossroads with regard to how I tackle the next year with J. As my recent posts have shown, J is experiencing some real difficulties at the moment and as a result so am I. My depression which was under control has raised it's head once more and keeping a positive outlook is hard. I have reached the stage where somethiong has to give and I suspect that what will give is my job. I only do 15 hours a week anyway but even that seems like just one more thing to achieve on top of being a good enough parent to J and keep a routine for housework going. I have always felt that J shares traits with me and feel I am probably on the autistic spectrum myself. Having said that, I am extremely disorganised (ADD?) and would thrive if I had a routine I could follow religiously every single day. How to get that routine is beyond me though and all I can see as a solution to all this is to stop working and make J and the house my job for a few years while I sort all this out.
I am constantly exhausted with sleepless nights, sleep apnoea when I do manage to sleep and the late nights of J. Consequently finding a way of getting organised into any sort of routine is beyond me much of the time.
I have made a list of the pros and cons of my life with work and without work which was helpful but depressing at the same time. The Pros being that I love my job, that it gives me time to be myself and do something for myself. It also gives me a lease car which is due back in December and the (a negative)refusal of a new vehicle unless I increase my hours which initially I felt I could do. The negative aspects of working are that I am around much less for J in my mind which is already scattered and disorganised. Ironically I am probably worse off financially IN work than I would be out of work. I already find my life hard to organise with J and work is an added stress for me as I worry constantly about missing anything due to my tiredness.
All in all I seem to have made the decision in my head that I will have some time off and am already trying to decide how I will word my resignation letter. I know my manager will not wish to lose me as we are already shortstaffed but I have no desire to be the person "always off sick" either so unless they can agree some parental leave then I am out of there.
How I will cope without a car is scary but I will sell my iPad and start a car fund, as long as I have something to get me from A to B then I can cope.
Tonight I discuss it all with my GP who is logical, sensible and lovely, and at the moment these are the qualities I need.
I am constantly exhausted with sleepless nights, sleep apnoea when I do manage to sleep and the late nights of J. Consequently finding a way of getting organised into any sort of routine is beyond me much of the time.
I have made a list of the pros and cons of my life with work and without work which was helpful but depressing at the same time. The Pros being that I love my job, that it gives me time to be myself and do something for myself. It also gives me a lease car which is due back in December and the (a negative)refusal of a new vehicle unless I increase my hours which initially I felt I could do. The negative aspects of working are that I am around much less for J in my mind which is already scattered and disorganised. Ironically I am probably worse off financially IN work than I would be out of work. I already find my life hard to organise with J and work is an added stress for me as I worry constantly about missing anything due to my tiredness.
All in all I seem to have made the decision in my head that I will have some time off and am already trying to decide how I will word my resignation letter. I know my manager will not wish to lose me as we are already shortstaffed but I have no desire to be the person "always off sick" either so unless they can agree some parental leave then I am out of there.
How I will cope without a car is scary but I will sell my iPad and start a car fund, as long as I have something to get me from A to B then I can cope.
Tonight I discuss it all with my GP who is logical, sensible and lovely, and at the moment these are the qualities I need.
Monday, 21 November 2011
Annual Review for Statement of SEN
So we had the first annual review today since James' was first given the elusive Statement of Special Educational Need. There were positives and negatives as I knew there would be and a long discussion about the difficulties James currently faces in school. Academically he has done well and progressed beyond all expectations in both numeracy and literacy. At the age of almost 9 he can now read - hesitantly and with lots of pauses but a world away from where he was a year ago. Thank you Mediknet for the change there.
On a negative note J's Personal, Social and Emotional development has not progressed and his attainment there is still measured in P-scales (recorded when a child is still working towards National Curriculum level 1). Although this was not a surprise to me given J's recent difficulties, it was still hard to see written in black and white.
We discussed J's ability to remain in mainstream education right the way through his school years and like everything else there are fors and againsts. On a positive note he is achieving academically now and remaining in mainstream education with children who do not have his difficulties will be excellent preparation for life in a mainstream community as an adult.
On a negative note there is the risk that J will become more isolated with time as the gap continues to widen between him and other children of his age. Currently he has many friends in the playground but generally these friends are girls. The girls (and especially his close friend M) tend to mother him and he thrives on this. They also invite him to their parties while the boys do not - this is good but there will come a time when inevitably the girls will cease to invite him as well. If this is to be the case then an education in a non-mainstream school geared up for children with ASD and co-morbid conditions might give J more social contact.
Thankfully it is a year before I will need to really consider this and in the meantime I have been encouraged to visit the secondary school which J's primary one feeds into and also the two local special schools which would see him through to age 16.
It has all left me feeling both positive and also a little sad. Without a doubt J is struggling at the moment and although I would not swap my lovely, funny and special little boy for anything in the world, there are times when I wish I could take away the difficulties he has, remove the autistic brain which makes his life hard and replace it with a neurotypical brain which would allow him freedom. But then I guess J would not be himself if that was to happen and I love him as he is -I just wish his life was easier for him, I wish the labels didn't itch, the noises didn't distress, the changes to routine didn't upset. I wish he could settle in the evening and fall asleep with ease but that's just not how it is and all I can do is find the right support to help him cope with these things.
So onwards and upwards, a CAF to be completed, the Aiming High for Disabled Children service to contact and a major strop to be had with the PCT which after a year and a half STILL has no real Occupational Therapy service for autistic children with sensory issues despite letters promising parents that this was being developed.
Watch this space.
On a negative note J's Personal, Social and Emotional development has not progressed and his attainment there is still measured in P-scales (recorded when a child is still working towards National Curriculum level 1). Although this was not a surprise to me given J's recent difficulties, it was still hard to see written in black and white.
We discussed J's ability to remain in mainstream education right the way through his school years and like everything else there are fors and againsts. On a positive note he is achieving academically now and remaining in mainstream education with children who do not have his difficulties will be excellent preparation for life in a mainstream community as an adult.
On a negative note there is the risk that J will become more isolated with time as the gap continues to widen between him and other children of his age. Currently he has many friends in the playground but generally these friends are girls. The girls (and especially his close friend M) tend to mother him and he thrives on this. They also invite him to their parties while the boys do not - this is good but there will come a time when inevitably the girls will cease to invite him as well. If this is to be the case then an education in a non-mainstream school geared up for children with ASD and co-morbid conditions might give J more social contact.
Thankfully it is a year before I will need to really consider this and in the meantime I have been encouraged to visit the secondary school which J's primary one feeds into and also the two local special schools which would see him through to age 16.
It has all left me feeling both positive and also a little sad. Without a doubt J is struggling at the moment and although I would not swap my lovely, funny and special little boy for anything in the world, there are times when I wish I could take away the difficulties he has, remove the autistic brain which makes his life hard and replace it with a neurotypical brain which would allow him freedom. But then I guess J would not be himself if that was to happen and I love him as he is -I just wish his life was easier for him, I wish the labels didn't itch, the noises didn't distress, the changes to routine didn't upset. I wish he could settle in the evening and fall asleep with ease but that's just not how it is and all I can do is find the right support to help him cope with these things.
So onwards and upwards, a CAF to be completed, the Aiming High for Disabled Children service to contact and a major strop to be had with the PCT which after a year and a half STILL has no real Occupational Therapy service for autistic children with sensory issues despite letters promising parents that this was being developed.
Watch this space.
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