so of late ive found auto pilot where you just cruise through and hope the ass doesnt fall out of your weak safety net then something strange happens friends come out and they catch you and gently restore you back to your feet step by step helping you back up. im still broken but im not in pieces im sticking together with lots of glue and love .
im a lucky mumma to have such a diverse bunch of loving friends who will just reach out and hug you just cause they believe you need one .
its not healthy to carry the hurt need to get it out before it festers .
dont get me wrong i love my kids but day in day out just me wears me down you can only be strong for so long before you start to crack . if you have support reach out to it pride only gets you so far
Blogging about my life and how i live it as a single tattooed mum of two kids one with special needs
Friday, 15 November 2013
Wednesday, 15 May 2013
in 2009 i was officially put on a parenting road a long daunting road called autism like any parenting road i knew it would be tough and long but noone tells others what this "Autism journey "is like well let me tell you in how i believe it is
its a dusty long winding road of unpredictability ,tears rivers of tears , sleep deprivation and mental exhaustion you grieve and grieve hard after diagnosis then add in these shoes your forced into that hurt your feet you drag yourself over hurdle after hurdle you have early intervention and therapy then comes school and funding issues then it likes to throw in all kinds of things like some kids just don't sleep others suffer so bad with aggression and anxiety as a parent you cop it .toileting is another late toileting or they never do it at all .Food when you struggle to get your child to eat or they have so many intolerance's you just don't know what to feed them. we then go down another path of therapy and endless appointments you don't know if your coming or going then comes school and teaching them social skills and life skills and you keep going even when you have other people in your family too look after you keep trying to master that time management skill keep everyone on path and your on that one way street to burn out .
like the parent we are we just keep going along this road our feet hurt our hearts they cry and our shoulders they droop under all this strain but deep down in our souls we are strong when all is down and we feel like we just cant summon one more step something inside says " no you can do this i'm here keep going you can do it lift that foot keep going " and we keep on walking once again because they are ours we are the parent
i hope you read my above words and see what having a child with ASD is like some days we are just done we vent we cry we need a hug we don't need pity we don't need your crap we need a hand we need someone to come over and say " i'm on this journey too here is my hand your not alone " even if not on the journey just to be told what we are doing on this road is worth something that even tho we dont get into the real world often we still belong
i have never turned to drugs to get me through as i have music and i believe its soul food is what gets me through to tune off and tune out to cry laugh and sing to dance and be free for those 4 mins or so i'm just like any of you and sometimes i think thats all we need is to feel human
its a dusty long winding road of unpredictability ,tears rivers of tears , sleep deprivation and mental exhaustion you grieve and grieve hard after diagnosis then add in these shoes your forced into that hurt your feet you drag yourself over hurdle after hurdle you have early intervention and therapy then comes school and funding issues then it likes to throw in all kinds of things like some kids just don't sleep others suffer so bad with aggression and anxiety as a parent you cop it .toileting is another late toileting or they never do it at all .Food when you struggle to get your child to eat or they have so many intolerance's you just don't know what to feed them. we then go down another path of therapy and endless appointments you don't know if your coming or going then comes school and teaching them social skills and life skills and you keep going even when you have other people in your family too look after you keep trying to master that time management skill keep everyone on path and your on that one way street to burn out .
like the parent we are we just keep going along this road our feet hurt our hearts they cry and our shoulders they droop under all this strain but deep down in our souls we are strong when all is down and we feel like we just cant summon one more step something inside says " no you can do this i'm here keep going you can do it lift that foot keep going " and we keep on walking once again because they are ours we are the parent
i hope you read my above words and see what having a child with ASD is like some days we are just done we vent we cry we need a hug we don't need pity we don't need your crap we need a hand we need someone to come over and say " i'm on this journey too here is my hand your not alone " even if not on the journey just to be told what we are doing on this road is worth something that even tho we dont get into the real world often we still belong
i have never turned to drugs to get me through as i have music and i believe its soul food is what gets me through to tune off and tune out to cry laugh and sing to dance and be free for those 4 mins or so i'm just like any of you and sometimes i think thats all we need is to feel human
Saturday, 12 January 2013
excuse me there ild like to get off this ride now please
those days you could gladly pack your bags and leave when your just so goddamn tired you would sell a limb for just one day so your brain could rest but it never happens never ever happens .
now the start to this year i swore i wouldnt be a hermit but like all things bad habits dont die easy like allways i stay home or just go to my mums to avoid being in public with one seriously angry 6 year old autism is so goddammn frustrating pretty much i have no life thanks to it the more i try and get out the more it holds me back
like sleep times like tonight hes refusing to sleep cause i put on the wrong movie we have arguing and screaming and all sorts of melt down going on taken him half hour to tell me the movie he wanted i only twigged last minute his speech hasn't progressed much i still guess allot of the time .
not that miss almost 3 doesn't give me a run for my money most nights i gather I'm run down run out and just not functioning on all cylinders school holidays have been so long i think i may celebrate when they are over
almost like i cant have fun any more cant drink more then a few cause if i do i think to myself " is this worth it when your kids get you up at 5am and its a bad day for Murray "
lately Murray has developed a blood curdling squeal and when hes not squealing hes sucking his fingers bowel training has gone so far backwards we are full time back in pull ups
he cant put his own shoes and socks on the whole " let him get dressed himself " didn't work he just doesn't get it
he cant even shower without assistance some days i think to myself I'm not strong I've been yelling crying seething wanting to punch holes in the wall my house looks like I've been robbed cant remember the last time i wasn't rushing from the toilet with my pants round my ankles yelling " please don't break that "
I'm also tired of being alone when its late at night and everyone else has that special someone and i just have who ever is on line that feels sorry for me and talks to me
i want a few more good days and allot less bad days
now the start to this year i swore i wouldnt be a hermit but like all things bad habits dont die easy like allways i stay home or just go to my mums to avoid being in public with one seriously angry 6 year old autism is so goddammn frustrating pretty much i have no life thanks to it the more i try and get out the more it holds me back
like sleep times like tonight hes refusing to sleep cause i put on the wrong movie we have arguing and screaming and all sorts of melt down going on taken him half hour to tell me the movie he wanted i only twigged last minute his speech hasn't progressed much i still guess allot of the time .
not that miss almost 3 doesn't give me a run for my money most nights i gather I'm run down run out and just not functioning on all cylinders school holidays have been so long i think i may celebrate when they are over
almost like i cant have fun any more cant drink more then a few cause if i do i think to myself " is this worth it when your kids get you up at 5am and its a bad day for Murray "
lately Murray has developed a blood curdling squeal and when hes not squealing hes sucking his fingers bowel training has gone so far backwards we are full time back in pull ups
he cant put his own shoes and socks on the whole " let him get dressed himself " didn't work he just doesn't get it
he cant even shower without assistance some days i think to myself I'm not strong I've been yelling crying seething wanting to punch holes in the wall my house looks like I've been robbed cant remember the last time i wasn't rushing from the toilet with my pants round my ankles yelling " please don't break that "
I'm also tired of being alone when its late at night and everyone else has that special someone and i just have who ever is on line that feels sorry for me and talks to me
i want a few more good days and allot less bad days
Monday, 7 January 2013
Jealousy
Some times i struggle to form a normal convosation with parents with non special needs children
i get so frustrated and my brain trips over its self and almost have to coach myself to slow down and think woah hold up if i say that i may offend them when you want to yell " for the love of god shut up " especially when they all of a sudden become an expert on your child's condition .
the one thing mainly i struggle with is jealousy when out and their children are behaving and mines flapping screaming singing being inappropriate has to be watched ever waking second needs to wear a harness is still in nappies i have to dress wash change and even put his shoes on . all the simple things they take for granted i wish for i know i have a two year old who is normal but i wish that my 6 year old could do 6 year old things . so i sit down and think to myself i'm being dramatic i'm over analyzing this as my child is awesome special and unique .
i think all special needs parent go through this stage where we sit back and check ourselves before we answer text messages or give advice when we are hanging on by a thread and others are asking for advice or help and your sucked dry have nothing to give so you avoid them just down right avoid them give one word answers and hide . when you see them out you smile and find an excuse to leave then when your feeling better they dont understand why you were avoiding them they assume you are a snob and refuse to hear your side of the bargin when really you assumed you were protecting them from your sleep deprived raft of anger tears and nasty words you cant retract .
you loose friends all the time and start to rely on baby sitters just to go to a kids party or a get together going places without your child just to avoid the stares or the ignorant people that laugh and talk about you while your in ear shot
we avoided kids parties for years for that very reason if friends wanted to catch up my mum would watch him i was scared to take my child to peoples houses let alone public places full of people .
i used to be a bubbly out going person now im wary of new people and tend to assess people as i get to know them
i also tend to bang on about therapies and school and toileting and all sorts of things to get strange looks so i shut up and go back into my shell its that look of " ok we understand your child has issues now shut up and change the topic "
the other side of it is people that try and make out their life is 40 times harder then mine and im making everything up and im dramatic its people like them that make us mad its like a kick to the guts to be told by a so called mate you are being over dramatic when you are stating real life events
i have found regular friend culls are beneficial if you want to maintain some sort of balance
thanks for listening to my late night thoughts
i get so frustrated and my brain trips over its self and almost have to coach myself to slow down and think woah hold up if i say that i may offend them when you want to yell " for the love of god shut up " especially when they all of a sudden become an expert on your child's condition .
the one thing mainly i struggle with is jealousy when out and their children are behaving and mines flapping screaming singing being inappropriate has to be watched ever waking second needs to wear a harness is still in nappies i have to dress wash change and even put his shoes on . all the simple things they take for granted i wish for i know i have a two year old who is normal but i wish that my 6 year old could do 6 year old things . so i sit down and think to myself i'm being dramatic i'm over analyzing this as my child is awesome special and unique .
i think all special needs parent go through this stage where we sit back and check ourselves before we answer text messages or give advice when we are hanging on by a thread and others are asking for advice or help and your sucked dry have nothing to give so you avoid them just down right avoid them give one word answers and hide . when you see them out you smile and find an excuse to leave then when your feeling better they dont understand why you were avoiding them they assume you are a snob and refuse to hear your side of the bargin when really you assumed you were protecting them from your sleep deprived raft of anger tears and nasty words you cant retract .
you loose friends all the time and start to rely on baby sitters just to go to a kids party or a get together going places without your child just to avoid the stares or the ignorant people that laugh and talk about you while your in ear shot
we avoided kids parties for years for that very reason if friends wanted to catch up my mum would watch him i was scared to take my child to peoples houses let alone public places full of people .
i used to be a bubbly out going person now im wary of new people and tend to assess people as i get to know them
i also tend to bang on about therapies and school and toileting and all sorts of things to get strange looks so i shut up and go back into my shell its that look of " ok we understand your child has issues now shut up and change the topic "
the other side of it is people that try and make out their life is 40 times harder then mine and im making everything up and im dramatic its people like them that make us mad its like a kick to the guts to be told by a so called mate you are being over dramatic when you are stating real life events
i have found regular friend culls are beneficial if you want to maintain some sort of balance
thanks for listening to my late night thoughts
Wednesday, 2 January 2013
Dark realms
well last few months we have been stuck in this alwful dance with master M . the smallest things set him off hes aggressive gone back to hitting ,kicking , throwing things and biting .its so hard to not be dragged down into that darkness they are in you start to get frustrated yourself angry and down right flustered you bottle it up cause your the main parent pull up your big person undies and push down all those dark feelings then bedtime comes around and they go to sleep and you fall apart like a crystal vase hitting concrete . so you log onto facebook just to get some adult time to have people plastering their kids awesome age appropriate mile stones in front of your already tired eyes and then you fall brain fills with all those "why isnt my child able to do that " its almost like that grieving you do when they hand you diagnosis comes back with the print outs that state in black and white what autism is and how things are going to be all the text books in the world may help us but its like a war unless you have fight at the front line you wont ever really know what war is like .
when a bad week descends i feel bad cause i feel like im constantly censoring myself and plastering on that happy smile " life is perfect im fine kids are fine " laugh smile laugh smile get home fall apart .
you get so mentaly tired it effects your sleep when your children sleep your up researching or just trying to de brief just a tiny bitt but unfortunately its allways 11pm or 2am when you lay in bed and stare at the celling just going over everything over and over in your head .
your life revolves around drs therapy appoitments research diets phone calls paper work you build up this kind of armor against it all .
the armor it gets dented and scratched but you keep it up and stand strong till it all becomes too much and that low blow hits and its back to stage one and you crawl back up
words such strong painful things they harm us more then people think.
i am a mumma bear i will fight for my kids till the end but even bears hibernate and sometimes ill hibernate just to get by basic housework gets done more walking is done to calm down mister M more times spent focusing on the kids to the point i dont focus on myself you start to run down then break down and respite is needed just to get back ontop like a service to a car its to keep you going
the time away is awesome you get to do all the things other parents take for granted like
1, having a shower and actually shaving your legs properly
2. Actually finish a meal without heart burn
3.get atleast your dishes washed and washing put through without stopping and starting 40 times
4. food shop without having to get your battle gear on and bag of tricks
5. go to the toilet and come out and nothing is destroyed
6.your brain gets a rest
7. you can have people visit you and your not high strung and running about the house
8.you get adult time time to act like an adult
9. you can socialize and find other parents just like you
10 . its good for your mental health to have some time to debrief and its not at 2am
in all we as carers need to take care of us at some point we are no good to our kids or anyone else if we are burnt out
we need to swallow that pride book that appoitment and get on with it acept help when offered
when a bad week descends i feel bad cause i feel like im constantly censoring myself and plastering on that happy smile " life is perfect im fine kids are fine " laugh smile laugh smile get home fall apart .
you get so mentaly tired it effects your sleep when your children sleep your up researching or just trying to de brief just a tiny bitt but unfortunately its allways 11pm or 2am when you lay in bed and stare at the celling just going over everything over and over in your head .
your life revolves around drs therapy appoitments research diets phone calls paper work you build up this kind of armor against it all .
the armor it gets dented and scratched but you keep it up and stand strong till it all becomes too much and that low blow hits and its back to stage one and you crawl back up
words such strong painful things they harm us more then people think.
i am a mumma bear i will fight for my kids till the end but even bears hibernate and sometimes ill hibernate just to get by basic housework gets done more walking is done to calm down mister M more times spent focusing on the kids to the point i dont focus on myself you start to run down then break down and respite is needed just to get back ontop like a service to a car its to keep you going
the time away is awesome you get to do all the things other parents take for granted like
1, having a shower and actually shaving your legs properly
2. Actually finish a meal without heart burn
3.get atleast your dishes washed and washing put through without stopping and starting 40 times
4. food shop without having to get your battle gear on and bag of tricks
5. go to the toilet and come out and nothing is destroyed
6.your brain gets a rest
7. you can have people visit you and your not high strung and running about the house
8.you get adult time time to act like an adult
9. you can socialize and find other parents just like you
10 . its good for your mental health to have some time to debrief and its not at 2am
in all we as carers need to take care of us at some point we are no good to our kids or anyone else if we are burnt out
we need to swallow that pride book that appoitment and get on with it acept help when offered
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