0 comment Wednesday, October 15, 2014 | admin
Normally I'm a fan of dragons but this week a few of the buggers need to be put to rest.
The past weekend has been recovery mode, but with the dawning of a new weekday, it's time to get back to things. I'm still recovering, still need daily bandage changes, still exhausted, but the food needs cooking, sprog needs the swimming run, I need to go to class, dishes and laundry need washed, clothes need mending or re-ordering as he's outgrown some trousers...
And through all this, no help at all from social services. Why? Because I'm Superwoman; I'm capable of getting things done, even when I'm too tired to think straight. My son is always fed, his teeth brushed, his lunch packed, his clothes patched and his homework completed. Always.
Therefore, this means I don't need any help, according to various services.
Srsly.
I keep hearing this a lot "You don't seem disabled" "We offer services to children more disabled than your son" "You're doing quite well for yourself" "He seems all right, he's doing well in school". This is all coming from people who I would imagine would know better; appearances mean NOTHING when it comes to disability. My son gets the highest rate of care for a reason (and not, as it was insinuated by one carer, because I fudged a bit on the DLA form). It doesn't matter that he can talk, that he is doing well in school, and he tends to respond rather well to people; those are the good times.
The good times are balanced out by the days he wees and craps on his bedroom floor, when he throws desks and chairs in his classroom at other children because he wanted a few more minutes on the computer. When he struggles to run off into a busy street because there's something on the other side he wanted to see, or he doesn't want to go in the direction I need to go in order to get milk and supplies.
And, believe it or not, those days are NORMAL when you're dealing with a child on the spectrum. Everyone's shocked when sprog breaks out, except for me. After all I deal with it every day.
I am monumentally fed up with my ability to keep up appearances as being attributed to me not needing any help at all. I'm killing myself to make sure my son is prepared for the day; I do nothing for me. Hair hasn't been washed in ages, washing up in the sink because I can no longer use the bath. I am more or less housebound as going out takes up too much energy away from child-rearing. But I don't LOOK housebound - and since, even against my wishes, the words "depression" are in my file, everything I deal with on a daily basis and the fact I admit I'm getting more and more run down is attributed first and last to mental state, not disability. Sadly, that's a pretty common issue when dealing with Fibro/CFS/ME - disability has to be visible to be "real".
The result of all this was I lost my patience with services this week and when my son's social worker showed, I was less than understanding of all the delays and excuses I've been getting. That he expected my ex to pick up the slack when I couldn't was ludicrous - that they tend to only give respite to children "more disabled" equally infuriating. Again I had to point out my son is on the highest rate, and this was given without any contest at all due to all the documentation of sprog's blowups and violent displays at school and home. Also, my ex came and tended sprog last week solely because social services didn't move fast enough - he didn't want to do it, and believe me I heard a lot of complaints! He's my ex-husband, we're going through divorce: he's not my carer and I am no longer his responsibility. If he has to consistently bail me out, then he may as well be taking care of sprog himself and he's not willing to do that. So...what other options are there?
My ex had a word with the man later on and he told me "He's rather English" (meaning that he's the breed of person who never says what he's really thinking for fear of offending someone, and tends to underestimate things in the extreme). I don't care to play the social diplomacy game anymore, however - if I don't get what I want, and am not told right now what that will be, I will be filing complaints. I'm not going away, I'm not giving up. I'm too angry, and when I'm angry, I'm a force of nature.
No more changing the subject when I bring up direct payments or respite care, no more of this "but you seem to be coping so well". Ironically, if I was instead completely ignoring sprog's care and solely taking care of myself, I'd probably get tonnes of assistance. I am penalised for my maternal instincts, it seems.
So, that's one dragon slain - the adult social services is another issue entirely which will get dealt with this week, as well as the appeal of DLA. The hospital complaint has been written and will be sent in today.
Spear is sharpened, charger is ready for battle. Bring it.
The past weekend has been recovery mode, but with the dawning of a new weekday, it's time to get back to things. I'm still recovering, still need daily bandage changes, still exhausted, but the food needs cooking, sprog needs the swimming run, I need to go to class, dishes and laundry need washed, clothes need mending or re-ordering as he's outgrown some trousers...
And through all this, no help at all from social services. Why? Because I'm Superwoman; I'm capable of getting things done, even when I'm too tired to think straight. My son is always fed, his teeth brushed, his lunch packed, his clothes patched and his homework completed. Always.
Therefore, this means I don't need any help, according to various services.
Srsly.
I keep hearing this a lot "You don't seem disabled" "We offer services to children more disabled than your son" "You're doing quite well for yourself" "He seems all right, he's doing well in school". This is all coming from people who I would imagine would know better; appearances mean NOTHING when it comes to disability. My son gets the highest rate of care for a reason (and not, as it was insinuated by one carer, because I fudged a bit on the DLA form). It doesn't matter that he can talk, that he is doing well in school, and he tends to respond rather well to people; those are the good times.
The good times are balanced out by the days he wees and craps on his bedroom floor, when he throws desks and chairs in his classroom at other children because he wanted a few more minutes on the computer. When he struggles to run off into a busy street because there's something on the other side he wanted to see, or he doesn't want to go in the direction I need to go in order to get milk and supplies.
And, believe it or not, those days are NORMAL when you're dealing with a child on the spectrum. Everyone's shocked when sprog breaks out, except for me. After all I deal with it every day.
I am monumentally fed up with my ability to keep up appearances as being attributed to me not needing any help at all. I'm killing myself to make sure my son is prepared for the day; I do nothing for me. Hair hasn't been washed in ages, washing up in the sink because I can no longer use the bath. I am more or less housebound as going out takes up too much energy away from child-rearing. But I don't LOOK housebound - and since, even against my wishes, the words "depression" are in my file, everything I deal with on a daily basis and the fact I admit I'm getting more and more run down is attributed first and last to mental state, not disability. Sadly, that's a pretty common issue when dealing with Fibro/CFS/ME - disability has to be visible to be "real".
The result of all this was I lost my patience with services this week and when my son's social worker showed, I was less than understanding of all the delays and excuses I've been getting. That he expected my ex to pick up the slack when I couldn't was ludicrous - that they tend to only give respite to children "more disabled" equally infuriating. Again I had to point out my son is on the highest rate, and this was given without any contest at all due to all the documentation of sprog's blowups and violent displays at school and home. Also, my ex came and tended sprog last week solely because social services didn't move fast enough - he didn't want to do it, and believe me I heard a lot of complaints! He's my ex-husband, we're going through divorce: he's not my carer and I am no longer his responsibility. If he has to consistently bail me out, then he may as well be taking care of sprog himself and he's not willing to do that. So...what other options are there?
My ex had a word with the man later on and he told me "He's rather English" (meaning that he's the breed of person who never says what he's really thinking for fear of offending someone, and tends to underestimate things in the extreme). I don't care to play the social diplomacy game anymore, however - if I don't get what I want, and am not told right now what that will be, I will be filing complaints. I'm not going away, I'm not giving up. I'm too angry, and when I'm angry, I'm a force of nature.
No more changing the subject when I bring up direct payments or respite care, no more of this "but you seem to be coping so well". Ironically, if I was instead completely ignoring sprog's care and solely taking care of myself, I'd probably get tonnes of assistance. I am penalised for my maternal instincts, it seems.
So, that's one dragon slain - the adult social services is another issue entirely which will get dealt with this week, as well as the appeal of DLA. The hospital complaint has been written and will be sent in today.
Spear is sharpened, charger is ready for battle. Bring it.
Labels: Sprog