Monday
Nervously attended short breaks' service sports session that he had been to before, in the same place he had been before, with the same lead as before, but new staff working for the short break provider were straight in his face, trying to include him, trying to talk to him about things he didn't want to talk about, didn't take the hints from him to shut down the conversation, inviting more and more people to talk to him. As a Mum I had alarm bells ringing loudly at this point and was amazed he even stayed for the session. By the end I had a warning text from my husband that he hadn't coped well at all and wasn't able to talk to him at all. He had stormed out past the staff at the end. Once home he sat with me and explained he had felt left out, felt noone cared there, noone had noticed him and he was angry at having to go to sessions where there are others with more obvious disabilities and needs than him, which makes him feel self conscious and he wants to go to mainstream activities. He had wanted to play basketball so the lead gave him a basketball and left him to get on with it. He didn't want to join in with the silly games others were playing so had sat on the edge, alone, watching people play badminton next door instead, with noone coming to speak to him at all.
Tuesday
Busy day with me at a course, sister at the local care farm, dog was sick, then a home education meet at a play area where his friend would be. Things have been difficult for him with his friend recently as he is noticing the age gap more and more when they are together in person (less so online but still there) and is getting frustrated. Basically both my son and his friend are very similar and strongly prefer to play their own games in their own way (in person and online) and it is difficult to know when to intervene and when to leave them work it out as a parent because this is such an important skill for them to develop, but at the same time could have explosive results. After there we headed to the gym for a quick workout and a swim, but the swimming pool was in use for lessons so our only choice was the larger, cooler pool. He wouldn't even consider that option so we stuck to the gym and shower instead. He was very down about this saying everything he had wanted to do today he hadn't been able to do.
Wednesday
Swimming. This time we checked the pool timetable before heading out solely for a swim in the lovely warm pool, after an aqua aerobics class I had booked myself onto. He was going to join in too, but the lack of males and those under 40 severely put him off (understandable) so he made do with my bank card and a trip to the cafe instead, meeting me in the pool later on, then meeting up in the cafe after our swim once again.
Later on both his sisters had a short break session booked but he didn't want to go. This, followed by a local autism group meeting, would mean him home alone for a couple of hours, but he was happy with that, knowing we had our phones and weren't far away. (He knows what to do in an emergency, has access to phones and is more than capable of getting out in a fire). Despite this he panicked and rang me, upset, asking how long we were going to be when we were on our way home.
Thursday
His sisters bank cards arrived this morning and he lost his temper, saying everything he thinks is just for him gets ruined by them getting or doing it too. Then he had his regular gymnastics session this morning where they were working towards their badges. Sadly his sister got her badge today and he has a couple of skills to pass next time before he can pass the same badge. This did not go down at all well. He was very angry and upset but did well to return to the session for the cool down at the end. We all went to the gym in the afternoon for a swim, paying for a day pass for his sisters and dad. I had spoken to him before even asking them, checking he was alright about them coming there, and he was excited that he could play with them in the pool and happy for the girls to join up to come swimming regularly with us (probably aimed more at his youngest sister I suspect though). In the pool he was rude, angry, dangerous and refused to engage or listen. He was picking on his sister again and it was a very difficult time. On top of this he was very nervous about the social worker coming in the morning to see them all and this led to a meltdown at bedtime.
Friday
Refusal to get up and see the social worker ended in him going downstairs to say hello, but she will return to see him again and fill out some paperwork she has about each child. After the stress of her visit (I have massively understated this and the effect it had on him and us here) we had time for a quick lunch (which he didn't want or like any of apparently) before his friend came over to play.
This has been a very emotional and difficult week for him and whilst I appreciate this, and can see how a lot of these things have a negative impact on him, I cannot allow the bullying of his sister to continue. I have realised he almost projects his dislike for his sister onto others who have similar needs to her when he meets them at events and activities where he then feels superior and acts as such in his role of leader. This is then all released when he returns home where he feels safe and we have to deal with the fallout.
Masking.
Our eldest daughter is able to mask her difficulties to some extent, people often just say she is quiet or shy (which makes my blood boil). But my eldest and youngest mask their anxieties in such complex ways noone ever sees it or realises what is going on, even when we have told them, leaving us to deal with the fallout time and time again.
Showing posts with label meltdown. Show all posts
Showing posts with label meltdown. Show all posts
Thursday, 22 March 2018
Tuesday, 20 February 2018
Blue badge application
When we go out anywhere, as you may have read in previous posts, we have an uphill struggle before we even leave our house. Two of our children have anxiety around going out, and with pathological demand avoidance and the anxiety led need to be in control, they have to know exactly where we are going, why, who with, how long for, who will be there, what will be there, what will it look/sound/feel like there, what the weather is like, who's idea it was to go, and then, only then, will they decide whether or not they can face going.
Once we get past this point, we then have to actually get out of the house- shoes, coats, jumpers, ipads, DVD etc all cause problems with three children with autism all trying to get their things on. No matter how we try and stagger this, or place their items of clothing in separate locations, giving them plenty of space, this does not get any easier.
Then we finally get into the van. On a good day we have done this without anyone getting hurt, without us having to physically intervene for anyone's safety, and without the whole street hearing that we are going out. On a normal day we have at least one child - usually one of our two with PDA- shouting, stomping about, slamming doors, screaming, crying, being carried to the van screaming, various states of undress as we leave the house and fingernails being dragged across the front door as we leave.
Then we get to where we are going. Parking is a nightmare. With a husband who has anxiety around busy places, finding the right parking space where we are reasonably close to our final destination is a priority, but we have a large van for this same reason, so we need a space where the neighbouring vehicles are parked within the lines, not those where people are slightly over or on the line. We then have three children with extremely limited danger awareness, who we try to navigate through the car park, making sure noone runs off as we get others out of the van. Invariable one of them will refuse to leave the van and time is spent convincing them that they need to leave it and come with us, preferably dressed appropriately for the weather conditions and wherever we are going. We have a special needs pushchair to help our youngest cope with her sensory processing needs and to enable her to cope with going out atall, so that needs to be got out of the van - usually through the side door as the van is long and we can never get to the back doors and be inside a parking space. Whilst we are putting up the pushchair, watching three children don't put themselves in danger, monitoring how busy the environment is, ensuring their ipads are safely stowed away,/held securely checking we have the ear defenders, gum, distractions needed for each of them, checking my husband is happy and coping and running throught the mental checklist of blanket, raincover, sunglasses, sensory bag, purse, phone, hand gel, dummy, cuddly toy, inhalers, tissues, snacks, drinks etc etc there is invariably someone waiting impatiently to squeeze into the car next to us. By the time we actually get anywhere we are ready to go home again.
If we are going outside for a walk then we also take our little dog with us - not so much for her to have a walk as she isn't generally interested- but so she can sit with our youngest in the pushchair for support, or so our eldest can carry/walk her which keeps him focussed on her, distracted from everything else and relatively calm.
Our eldest daughter is the most likely to wander infront of moving traffic- and has done so many times. We generally have our youngest hand in hand if she is able to walk, or in the pushchair, our eldest is usually next to me, but our eldest daughter has to hold a hand or hold the buggy to prevent her wandering off whilst in her own world. She has wandered infront of cars whilst counting kerb stones before now, only stepping on white lines of the zebra crossing led her into the path of a reversing car, she doesn't even realise when these things happen, just gets pulled back by me and then looks at me as if it was my fault. Patterns distract her so much it truly is a danger.
When any of them have too much sensory information input, or when people expect too much from them (because they all look 'normal'....yes, I hate that word too but here I feel it best describes how people view them and how that affects their expectations of them) then this comes out as escalating behaviours if we are lucky, or straight to a meltdown/panic attack, at which point we need immediate access to the van when we are out in order to allow them chance to de-escalate, or ride out the meltdown, which usually ends in exhaustion for them (and us) so they need somewhere safe and familiar to help them.
I applied for DLA for all three children before they had been diagnosed, and before we had a full understanding of all of their needs and behaviours. I need to revisit this application for our youngest, as her care needs and mobility needs are increasing, and are easily explained within her reports from her psychologist and occupational therapist. I am not sure how to do this and need to bite the bullet and find out.
Today though was our interview following my application for a blue badge for her. I am under no illusions as to the liklihood of us actually getting one, and am fully expecting to have to appeal the decision not to award her a badge, but had to try anyway. I truly do feel she needs one, and the recent news that the government is reconsidering the procedure for awarding blue badges to people with mental disabilities and hidden disabilities couldn't come soon enough.
The lady we saw today couldn't have been less helpful. She had no interest whatsoever in anything I had with me- reports backing up the need for my youngest to have regular movement breaks, her demand avoidance, anxiety, sensory processing difficulties, statements from professionals acknowledging her difficulties with going out and walking. All she seemed interested in was trying to get my daughter to say hello, then goodbye to her. As if that was going to happen! She was so anxious about going that last night was a real struggle, let alone being able to speak to the woman who was as dry as the dessert.
The space on the form to write the information on when she cannot walk, why she cannot walk, and why we are applying for the badge was no more than five lines long, and this lady had big writing. I understand that people with physical disabilities may not need much space on such a form, but there are thousands of people who have problems walking any distance, or at all in many situations, who need a lot of information noting down surely.
She wrote in the even smaller box for additional information, that we can park in mother and baby spaces! When I pointed out that these are few and far between, and often full and not in every place we need to go, she said that she didn't know as she has never needed them. This compounded my gut feeling on sitting in her office, where her lack of humanity and empathy were palpable, these jobs are literally given to anyone.
We have to wait a couple of weeks to hear a decision now, and I checked with her that there is indeed an appeal procedure, fully expecting to be turned down because physically she can walk, even though she can't. I honestly wish that the changes would hurry up and be approved throughout the UK to help families in positions like ours.
Once we get past this point, we then have to actually get out of the house- shoes, coats, jumpers, ipads, DVD etc all cause problems with three children with autism all trying to get their things on. No matter how we try and stagger this, or place their items of clothing in separate locations, giving them plenty of space, this does not get any easier.
Then we finally get into the van. On a good day we have done this without anyone getting hurt, without us having to physically intervene for anyone's safety, and without the whole street hearing that we are going out. On a normal day we have at least one child - usually one of our two with PDA- shouting, stomping about, slamming doors, screaming, crying, being carried to the van screaming, various states of undress as we leave the house and fingernails being dragged across the front door as we leave.
Then we get to where we are going. Parking is a nightmare. With a husband who has anxiety around busy places, finding the right parking space where we are reasonably close to our final destination is a priority, but we have a large van for this same reason, so we need a space where the neighbouring vehicles are parked within the lines, not those where people are slightly over or on the line. We then have three children with extremely limited danger awareness, who we try to navigate through the car park, making sure noone runs off as we get others out of the van. Invariable one of them will refuse to leave the van and time is spent convincing them that they need to leave it and come with us, preferably dressed appropriately for the weather conditions and wherever we are going. We have a special needs pushchair to help our youngest cope with her sensory processing needs and to enable her to cope with going out atall, so that needs to be got out of the van - usually through the side door as the van is long and we can never get to the back doors and be inside a parking space. Whilst we are putting up the pushchair, watching three children don't put themselves in danger, monitoring how busy the environment is, ensuring their ipads are safely stowed away,/held securely checking we have the ear defenders, gum, distractions needed for each of them, checking my husband is happy and coping and running throught the mental checklist of blanket, raincover, sunglasses, sensory bag, purse, phone, hand gel, dummy, cuddly toy, inhalers, tissues, snacks, drinks etc etc there is invariably someone waiting impatiently to squeeze into the car next to us. By the time we actually get anywhere we are ready to go home again.
If we are going outside for a walk then we also take our little dog with us - not so much for her to have a walk as she isn't generally interested- but so she can sit with our youngest in the pushchair for support, or so our eldest can carry/walk her which keeps him focussed on her, distracted from everything else and relatively calm.
Our eldest daughter is the most likely to wander infront of moving traffic- and has done so many times. We generally have our youngest hand in hand if she is able to walk, or in the pushchair, our eldest is usually next to me, but our eldest daughter has to hold a hand or hold the buggy to prevent her wandering off whilst in her own world. She has wandered infront of cars whilst counting kerb stones before now, only stepping on white lines of the zebra crossing led her into the path of a reversing car, she doesn't even realise when these things happen, just gets pulled back by me and then looks at me as if it was my fault. Patterns distract her so much it truly is a danger.
When any of them have too much sensory information input, or when people expect too much from them (because they all look 'normal'....yes, I hate that word too but here I feel it best describes how people view them and how that affects their expectations of them) then this comes out as escalating behaviours if we are lucky, or straight to a meltdown/panic attack, at which point we need immediate access to the van when we are out in order to allow them chance to de-escalate, or ride out the meltdown, which usually ends in exhaustion for them (and us) so they need somewhere safe and familiar to help them.
I applied for DLA for all three children before they had been diagnosed, and before we had a full understanding of all of their needs and behaviours. I need to revisit this application for our youngest, as her care needs and mobility needs are increasing, and are easily explained within her reports from her psychologist and occupational therapist. I am not sure how to do this and need to bite the bullet and find out.
Today though was our interview following my application for a blue badge for her. I am under no illusions as to the liklihood of us actually getting one, and am fully expecting to have to appeal the decision not to award her a badge, but had to try anyway. I truly do feel she needs one, and the recent news that the government is reconsidering the procedure for awarding blue badges to people with mental disabilities and hidden disabilities couldn't come soon enough.
The lady we saw today couldn't have been less helpful. She had no interest whatsoever in anything I had with me- reports backing up the need for my youngest to have regular movement breaks, her demand avoidance, anxiety, sensory processing difficulties, statements from professionals acknowledging her difficulties with going out and walking. All she seemed interested in was trying to get my daughter to say hello, then goodbye to her. As if that was going to happen! She was so anxious about going that last night was a real struggle, let alone being able to speak to the woman who was as dry as the dessert.
The space on the form to write the information on when she cannot walk, why she cannot walk, and why we are applying for the badge was no more than five lines long, and this lady had big writing. I understand that people with physical disabilities may not need much space on such a form, but there are thousands of people who have problems walking any distance, or at all in many situations, who need a lot of information noting down surely.
She wrote in the even smaller box for additional information, that we can park in mother and baby spaces! When I pointed out that these are few and far between, and often full and not in every place we need to go, she said that she didn't know as she has never needed them. This compounded my gut feeling on sitting in her office, where her lack of humanity and empathy were palpable, these jobs are literally given to anyone.
We have to wait a couple of weeks to hear a decision now, and I checked with her that there is indeed an appeal procedure, fully expecting to be turned down because physically she can walk, even though she can't. I honestly wish that the changes would hurry up and be approved throughout the UK to help families in positions like ours.
Saturday, 6 January 2018
Best intentions
In our local area, the social services support is pathetic. The end.
----------------------------------------------------------------------------------------------------------------------------------
Just kidding- not about the above fact, but obviously that cannot be the end.
(image from image search http://r.search.yahoo.com/_ylt=A2KLj.u.j05aABMAtQ_.3olQ;_ylu=X3oDMTBxNG1oMmE2BHNlYwNmcC1hdHRyaWIEc2xrA3J1cmwEaXQD/RV=2/RE=1515126846/RO=11/RU=http%3a%2f%2fkaycehughes.blogspot.com%2f2011%2f10%2fexhausted.html/RK=2/RS=K1b6jzKFYSLQxinZKoK7n.7jo.k-)
As a full time carer for three children with autism, life can be full on, and days can go by where for one reason or another we cannot leave the house. As parents we absolutely love our children and would not wish them to be different in any way to themselves, but that doesn't mean that it is easy by any means.
At a point of exhaustion last year I sought support from a local group of parents - I had every hope of it not being one of those clicky groups, but sadly my worst fears were proven true at the first signs of having my own mind. I asked for support from the head of social services for disabilities.
Six months later we had a social worker assigned to us (after I chased up this manager again) but her support has been underwhelming. We have had a child in need meeting, where I sat with a few professionals, none of which had actually met all of my children anyway, and listened to them passing the buck- literally in some cases, before arranging another trip out of their offices, sorry, I mean another child in need meeting for a few months time.
I was asked during the assessment prior to this meeting, what my support needs were. I told them as openly as I dared, that having no family and few friends (we are still fairly new to the area and with not being able to go out it is hard to make friends anyway), life is exhausting with no break. I told them that everything is a battle- and I emphasised EVERYTHING with examples such as going to the toilet by myself, cleaning, eating, anyone's personal care, leaving the house, getting dressed.....normal everyday things everyone has to do are so difficult and constant battles here. Everyday.
There were lots of agreeing noises, nods and writing down on a form, followed by a trip upstairs to 'see the children's bedrooms' (I still don't understand why they need to do that every time they come out....we know when the social worker is coming, wouldn't let her in if we didn't anyway, so if the children's bedrooms were not OK (whatever that would be) then they wouldn't see that anyway!). Next I heard was that the only support social services can offer us is, at best, a weekly activity for each child through their short breaks provider. Please someone tell me I am not going crackers here....I have explained that we cannot get out of the house, so their answer is to literally set us up to fail by saying they can offer our children activities out of the house??
Yesterday was the first activity of this new year. It was not arranged through social services as I have not heard back from them yet, but the children get one session a month at the moment- each. I was looking forward to last night as it was the first time we had booked all three children in to the same activity, so it meant my husband and I would actually have two hours together. Alone.
Of course this did not happen. Our two eldest went to the planned session and thoroughly enjoyed themselves, whilst our youngest sat in the van with us, screaming, shouting, kicking, punching and eventually wore herself out and fell asleep.
We do everything we can, all the time, to alleviate any anxiety the children have. We discuss everything, make decisions together, reduce all demands whenever possible, use the Ross Greene explosive child approach to parenting and still when meltdowns happen (usually when we need to go somewhere) none of this helps. Even being able to see the signs and trying to divert/distract/discuss/reassure before it escalates to this extreme is no good in these situations with our children with PDA. Last night came out of nowhere. She was perfectly happy all day, she knew what was coming up all day/evening so it was no surprise to her, but still BANG, meltdown and a half.
This is not the first time our children have been absent from these sessions with no notice, and I am sure that this is noted somewhere being as they are linked to social services, yet the social worker still thinks extra sessions will help us? I have no desire to have these battles, potentially three times a week between the three children, having to either expend so much energy and time convincing them to attend an activity in the first place, for them to change their mind at the last minute, or to cause so much anxiety and stress that they have a meltdown and suffer emotionally as a result. Yet, now I have asked for support, I am very aware that if I turn around to them and explain- again- that I don't think these sessions are going to have a positive effect on any of us in the family, then I will be seen as not engaging with the support and being reluctant to accept support.
Excuse the cynicism here, but it is based on facts and past experiences from both sides of the desk.
Also, I will happily spend all day and night and all my energy supporting, cajoling, encouraging and discussing actvities and opportunities with my children, and do not mind if they change their minds (many times) at any point, even if we have paid for activities, but to have to do this for activities they have not chosen themselves and have no real desire to partake in is my issue.
----------------------------------------------------------------------------------------------------------------------------------
Just kidding- not about the above fact, but obviously that cannot be the end.
As a full time carer for three children with autism, life can be full on, and days can go by where for one reason or another we cannot leave the house. As parents we absolutely love our children and would not wish them to be different in any way to themselves, but that doesn't mean that it is easy by any means.
At a point of exhaustion last year I sought support from a local group of parents - I had every hope of it not being one of those clicky groups, but sadly my worst fears were proven true at the first signs of having my own mind. I asked for support from the head of social services for disabilities.
Six months later we had a social worker assigned to us (after I chased up this manager again) but her support has been underwhelming. We have had a child in need meeting, where I sat with a few professionals, none of which had actually met all of my children anyway, and listened to them passing the buck- literally in some cases, before arranging another trip out of their offices, sorry, I mean another child in need meeting for a few months time.
I was asked during the assessment prior to this meeting, what my support needs were. I told them as openly as I dared, that having no family and few friends (we are still fairly new to the area and with not being able to go out it is hard to make friends anyway), life is exhausting with no break. I told them that everything is a battle- and I emphasised EVERYTHING with examples such as going to the toilet by myself, cleaning, eating, anyone's personal care, leaving the house, getting dressed.....normal everyday things everyone has to do are so difficult and constant battles here. Everyday.
There were lots of agreeing noises, nods and writing down on a form, followed by a trip upstairs to 'see the children's bedrooms' (I still don't understand why they need to do that every time they come out....we know when the social worker is coming, wouldn't let her in if we didn't anyway, so if the children's bedrooms were not OK (whatever that would be) then they wouldn't see that anyway!). Next I heard was that the only support social services can offer us is, at best, a weekly activity for each child through their short breaks provider. Please someone tell me I am not going crackers here....I have explained that we cannot get out of the house, so their answer is to literally set us up to fail by saying they can offer our children activities out of the house??
Yesterday was the first activity of this new year. It was not arranged through social services as I have not heard back from them yet, but the children get one session a month at the moment- each. I was looking forward to last night as it was the first time we had booked all three children in to the same activity, so it meant my husband and I would actually have two hours together. Alone.
Of course this did not happen. Our two eldest went to the planned session and thoroughly enjoyed themselves, whilst our youngest sat in the van with us, screaming, shouting, kicking, punching and eventually wore herself out and fell asleep.
We do everything we can, all the time, to alleviate any anxiety the children have. We discuss everything, make decisions together, reduce all demands whenever possible, use the Ross Greene explosive child approach to parenting and still when meltdowns happen (usually when we need to go somewhere) none of this helps. Even being able to see the signs and trying to divert/distract/discuss/reassure before it escalates to this extreme is no good in these situations with our children with PDA. Last night came out of nowhere. She was perfectly happy all day, she knew what was coming up all day/evening so it was no surprise to her, but still BANG, meltdown and a half.
This is not the first time our children have been absent from these sessions with no notice, and I am sure that this is noted somewhere being as they are linked to social services, yet the social worker still thinks extra sessions will help us? I have no desire to have these battles, potentially three times a week between the three children, having to either expend so much energy and time convincing them to attend an activity in the first place, for them to change their mind at the last minute, or to cause so much anxiety and stress that they have a meltdown and suffer emotionally as a result. Yet, now I have asked for support, I am very aware that if I turn around to them and explain- again- that I don't think these sessions are going to have a positive effect on any of us in the family, then I will be seen as not engaging with the support and being reluctant to accept support.
Excuse the cynicism here, but it is based on facts and past experiences from both sides of the desk.
Also, I will happily spend all day and night and all my energy supporting, cajoling, encouraging and discussing actvities and opportunities with my children, and do not mind if they change their minds (many times) at any point, even if we have paid for activities, but to have to do this for activities they have not chosen themselves and have no real desire to partake in is my issue.
Subscribe to:
Posts (Atom)