These are called 'outside agencies' by professionals and by us parents - nightmare!
Sometimes they are so so welcome, even sort out by us parents. Then there are the times when, due to all the horror stories, we never ever want their attention turned our way but it's taken out of our hands.
Those times are the ones I really - I mean REALLY - hate the people who think they can put their opinions above that of the family (yes, this has happened only once to us). For those times when they are welcomed with either wide open or slightly ajar arms, they can make or break your day.
For example: here we have Parent Support Advisors and we have dealt with 2 different ones due to locations. Both women have made a huge difference to us as a family; our current one keeps us on our toes (in a good way 😀) and is always willing to try alternative routes to get us and R the help, support and understanding we need - desperately!
Then you have Occupational Therapists or OT, these men and women when dealing with a family like ours, are true saints! I say this because ours is a community OT so deals with all of us. She listens to R (who does not stop talking) whilst treating me; and I don't stop talking to her. Mainly because loosing independence is hell socially lol.
Another agency we haven't met outside of a hospital and wish there were more working alongside other agencies, are the play therapists - play as in toys! Most people I know do not understand why I wax lyrical about these people but it's because life can be overwhelming for anyone, but especially for someone like R. These people can pop up just when you think 'I'm gonna loose it any second now!' They never take themselves or the kiddos behaviour that they deal with seriously.
I remember the first time we ever met one of these saints. It was before we had H and R was in to have his tied down testicle operation site checked. In a new hospital, new clinic and FULL of noisy kids and shouting parents, not a good environment for R not to blow his sensory gasket. I think he could pick up on how tense we were about how he would handle this all, which wasn't well at all!
As he started to blow and throw toys around and generally scream, cry and sensitive to touch - in walked this clown. Yes a CLOWN - curly red hair, red nose, even a water squirting flower! He walked up to R and crouched to his level - que deep intake of breath as visions of R hitting this bloke in the manly bits - turned to him and said, 'Well now I'm Dr Hoothill, and that's my patient you are throwing around. May I do my checks now?'
Now I bet you are there thinking 'this is where the poor man gets decked out', nope that didn't happen. R just stopped everything - I mean EVERYTHING - and turned to him to hand him this truck with his questioning look then signed yes. R avidly watched as this guy held a stethoscope to various points on the truck, gasping every so often and talking to the truck like he would a child. Dr Hoothill (still makes me giggle now), then handed the truck back and said 'Thank you, he's all better now. What's your name?' Now R only had a handful of words at this point and used them right here shocking us both, 'Roman Rees Carey, pretty flower'.
The guy then lent forward for R to sniff his flower and pressed the button to action the water. I truly thought R would scream blue murder, he just giggled and pushed the button again put in the mans face - most adults here would be horrified they got wet, not this man - nope he belly laughter then fell on his butt making R giggle more. Saying good bye he walked to us and said, 'What a fabulously happy little boy you have, well done'
I will admit right here, I cried! This just shows you what a MASSIVE difference an understanding and accepting adult can make to the PARENTS, let alone the child or children. This man, who didn't know us or R or even why we were there, accepted that R was struggling with the environment. Instead of insisting R be moved to another area, he just made the environment more friendly to R's mind. Then just topped it by accepting that we were struggling alongside R but we're doing the best we could.
Always this moment sticks in my mind when a new outside agency is introduced, because you will never know when the one person will make such a difference.
Thursday 25 February 2016
Wednesday 24 February 2016
Routine or not to routine?
That big question every parent dreads - do you put a strict routine in place or not? And if you do what age and how strict?
We, personally, started very early with a basic loose routine from day one - things like bedtimes, meal times and sleeping in their own rooms. Not all parents like this style but I'm a firm believer in everyone follows their own road and try to never judge another parent for their style - I expect the same back.
As the boys have grown we have implemented more routines like tidying up after themselves and eating at the table (whenever possible that is - everyone loves carpet picnics lol). The only problem we have encountered with routines is R. Yup, I put him as a problem here, that's because R thrives on routine and an extremely strict one at that; mess with that and holy moly meltdown it gets bad!
As a parent, a routine as strict as R needs was never on the cards, and now, for me personally, a near impossibility. We try, for him, to keep up with it but have started to loosen it off for him. Ok that sounds so easy right there - it's not!
Firstly, we have to explain every single detail of the whys, the what's and the how's to each reasoning. Secondly, we have to do it s....l.....o......w.......l......y - so slow it sometimes feels like nothing is changing. Then comes the day, finally after copious amounts of tears (them just from me!) and meltdowns, he just accepts bedtime yoga (or anything else for that matter) can't always be done downstairs in the living room, even done at all some nights.
It's painfully slow to adjust routines once they are in place, especially when those routines are bad habits - eating out most nights or eating on your lap more than the table. So the question still stands - Do you put a routine in place or not?
That question is only for you, as a parent or carer, can answer and sometimes it's trial by fire with them until you and your complex needs kiddo find that balance. Personally, in this household, we will keep persevering with routines, even if they need adapting often.
We, personally, started very early with a basic loose routine from day one - things like bedtimes, meal times and sleeping in their own rooms. Not all parents like this style but I'm a firm believer in everyone follows their own road and try to never judge another parent for their style - I expect the same back.
As the boys have grown we have implemented more routines like tidying up after themselves and eating at the table (whenever possible that is - everyone loves carpet picnics lol). The only problem we have encountered with routines is R. Yup, I put him as a problem here, that's because R thrives on routine and an extremely strict one at that; mess with that and holy moly meltdown it gets bad!
As a parent, a routine as strict as R needs was never on the cards, and now, for me personally, a near impossibility. We try, for him, to keep up with it but have started to loosen it off for him. Ok that sounds so easy right there - it's not!
Firstly, we have to explain every single detail of the whys, the what's and the how's to each reasoning. Secondly, we have to do it s....l.....o......w.......l......y - so slow it sometimes feels like nothing is changing. Then comes the day, finally after copious amounts of tears (them just from me!) and meltdowns, he just accepts bedtime yoga (or anything else for that matter) can't always be done downstairs in the living room, even done at all some nights.
It's painfully slow to adjust routines once they are in place, especially when those routines are bad habits - eating out most nights or eating on your lap more than the table. So the question still stands - Do you put a routine in place or not?
That question is only for you, as a parent or carer, can answer and sometimes it's trial by fire with them until you and your complex needs kiddo find that balance. Personally, in this household, we will keep persevering with routines, even if they need adapting often.
Tuesday 23 February 2016
Labels?!
Lets think about labels right now - ASD, SPD, ADHD, ADD, ODD, CFS, ME, Autism, Aspergers, Fibromyalgia, PTSD and so many others for all ages, male and female, all races.
Looks complex and baffling right? It was to us when doctors started throwing different things at us and family/friends kept asking us why we were trying to get R labelled. So many bad connotations to being 'labelled'!
I sat there thinking I was a bad parent for pushing the doctors into giving us answers, to getting R the help he so needed in school and at home - complex needs is blooming expensive you know! As time has gone by and more labels were added to R and to me as well (yes I have extra medical needs as well), the more I understood that for schools this meant there was more money pots they could access to allow for one to one teachers, fidgets etc and for doctors to understand what had been tried before or what tests had already been done.
Although to us, these 'labels' were actual diagnoses for R, and meant there was a better chance of getting the help WE needed at home. To have access to grants and funds, which we needed to apply for, to although us to buy R weighted blankets, sensory products, even a trampoline! So far he's got an iPad, which we bought second hand after trading in games and DVDs to raise the money.
Everything else - it's on a wish list or my to make list. Never to be bought or made as finances will never allow, those grants and funds we thought would open to us for application? Nope, not disabled enough!
Honest that's the real actual reason we were given, by letter - not disabled enough and is mainly behavioural therefore does not require our assistance! What more could a child or family need to put forward to be classed as 'disabled enough'?
As I have pointed out in a previous post R has ASD (autism spectrum disorder), SPD (sensory processing disorder), partial 3rd nerve palsy, no 3D vision, epilepsy, SCD (social communication disorder) and a chromosomal deletion - add to that my own Fibromyalgia, ME (CFS or chronic fatigue syndrome) and depression, and still we are classed as not disabled enough.
To me this terminology of labelling someone to help them access support has pros and ere are days when I just write it down and think 'Why?' We haven't received any help that has been about helping us as a family.
Then there are days, especially those when we meet with R's school, that I sit there and think, 'Finally someone understands what we have to go through and they actually want to help!'
So for those who think us parents are ALL about 'labelling' our kiddos - remember we don't choose for our kiddos to have these issues, for us as a family to struggle everyday or visit the hospital every months (for some every week).
For those of you who are struggling with everything, remember this - YOU are doing everything possible for that/those children, keep up the good work mummies and daddies!
With Empathy and Understanding comes Acceptance!
Looks complex and baffling right? It was to us when doctors started throwing different things at us and family/friends kept asking us why we were trying to get R labelled. So many bad connotations to being 'labelled'!
I sat there thinking I was a bad parent for pushing the doctors into giving us answers, to getting R the help he so needed in school and at home - complex needs is blooming expensive you know! As time has gone by and more labels were added to R and to me as well (yes I have extra medical needs as well), the more I understood that for schools this meant there was more money pots they could access to allow for one to one teachers, fidgets etc and for doctors to understand what had been tried before or what tests had already been done.
Although to us, these 'labels' were actual diagnoses for R, and meant there was a better chance of getting the help WE needed at home. To have access to grants and funds, which we needed to apply for, to although us to buy R weighted blankets, sensory products, even a trampoline! So far he's got an iPad, which we bought second hand after trading in games and DVDs to raise the money.
Everything else - it's on a wish list or my to make list. Never to be bought or made as finances will never allow, those grants and funds we thought would open to us for application? Nope, not disabled enough!
Honest that's the real actual reason we were given, by letter - not disabled enough and is mainly behavioural therefore does not require our assistance! What more could a child or family need to put forward to be classed as 'disabled enough'?
As I have pointed out in a previous post R has ASD (autism spectrum disorder), SPD (sensory processing disorder), partial 3rd nerve palsy, no 3D vision, epilepsy, SCD (social communication disorder) and a chromosomal deletion - add to that my own Fibromyalgia, ME (CFS or chronic fatigue syndrome) and depression, and still we are classed as not disabled enough.
To me this terminology of labelling someone to help them access support has pros and ere are days when I just write it down and think 'Why?' We haven't received any help that has been about helping us as a family.
Then there are days, especially those when we meet with R's school, that I sit there and think, 'Finally someone understands what we have to go through and they actually want to help!'
So for those who think us parents are ALL about 'labelling' our kiddos - remember we don't choose for our kiddos to have these issues, for us as a family to struggle everyday or visit the hospital every months (for some every week).
For those of you who are struggling with everything, remember this - YOU are doing everything possible for that/those children, keep up the good work mummies and daddies!
With Empathy and Understanding comes Acceptance!
Sunday 21 February 2016
Guilt.....
Firstly, I have spent days thinking about which topic was best for this post (there are a lot!). Then after reading another bloggers post about a mothers guilt over premature birth, the topic of guilt was the best thing to post for you all. (www.anordinarymummy.wordpress.com)
Every parent feels guilt, it's essentially what being a parent is about. It's gritty, it's hard work and it clings to everything (a bit like baby poop!). I, myself, hold guilt to this day over how both my pregnancies and subsequent premature births went. Could I have changed things? Done something or not done something? Why did I have to get pre eclampsia or fatty liver of pregnancy? Why did I feel relief to leave my baby at hospital? Does that make me a bad mummy?
The answers - no! It's been a long fight to believe that answer and sometimes I still believe it was my fault.
The same feelings of guilt plague those of us with complex needs kiddos, even if they were born at the stereotypical times and ways. We sit here thinking 'Was it something I did during pregnancy?'. It's a guilt that hovers in the background until our kiddos struggle with something that, someone else's neuro-typical kiddo can grasp easily. It's deep and dark and we hide it behind our faith in medical professionals, behind the fight with schools and the cost of equipment.
Our ability to stand up for our kiddos against everyone who doesn't see them as they are, stems from this guilt we carry I believe. Not just us mummies but daddies too.
Daddies, sometimes the unsung heroes in my mind, carry just as much guilt (if not more) as us mummies. That isn't to say us mums have it easier or that our guilt isn't as real or heavy as the dads; it's saying that for dads, they enact their guilt in different ways and, yes, sometimes it can be worse than what we mums deal with.
Don't forget, 99% of the dads work full time, come home to take on the roll of daddy, help with bed time (well hubby does bedtime here) and, like with us, does the housework too before taking time for themselves. Not all dads do this and some even do more, but the fact is their guilt will mainly stem from not being around as much, not helping more during pregnancy, not getting that ice cream you were craving at 2am during week 13 of pregnancy. Does that then make it their fault our kiddos have the issues they do?
NO it doesn't! It makes them as human and as faultless as us! Our joint guilty feelings are the reason why we fight so hard, through so much for our kiddos; no matter what the hurdles!
Now, remember, I am only writing from the only point of views I have - mine and hubby's! I know that out there in the world, there are parents who are to blame for their kiddos problems(whatever they are) and that some don't even care about their kiddos. Yet I choose to believe that if you are reading my blog (even if some of my posts aren't all that awesome at times); that you are following the same sort of path as I am and as such, you aren't one of the parents who doesn't care.
Now, do I still blame myself for all the things R has to overcome? Even though, compared to H (who was 9 weeks early), he wasn't really all that early at 35 weeks gestation?
Yes I do still blame myself. He was my first pregnancy and I thought all those programmes I had watched from 16 years old, prepared me for everything; that I was super mum! Erm, sorry but I wasn't! I ignored pain signals when I should have listened and my birth plan - well was plain stupid when I look back; didn't want epidural because of the size of the needle, needless to say I had the epidural.
Some of my guilt has subsided over time, as we travel this journey together. Especially this week (half term), when R self regualted his sensory needs and after I read an article about autism. I do not know how valid the article was but it definitely helped me let go of some of my guilt. It was about a study being done that showed autism starts in the womb as the brain develops. It stated something along the lines of, even if no problems arose during pregnancy, this development of the brain can occur.
So, for those of us with autistic kiddos - there was nothing we could have done to stop what happened. With that I am going to leave you with my hubby's view of SEN or complex needs -
"There are no complex needs, just adults who think kids who just see the world differently, have extra needs than is seen to be normal. Those who have been told they have complex needs, whatever they may be, are just the next evolution of humankind. We are trying to stop that evolution by trying to make them fit into our mould. Let them show the world how amazing they are and the world we live in."
Every parent feels guilt, it's essentially what being a parent is about. It's gritty, it's hard work and it clings to everything (a bit like baby poop!). I, myself, hold guilt to this day over how both my pregnancies and subsequent premature births went. Could I have changed things? Done something or not done something? Why did I have to get pre eclampsia or fatty liver of pregnancy? Why did I feel relief to leave my baby at hospital? Does that make me a bad mummy?
The answers - no! It's been a long fight to believe that answer and sometimes I still believe it was my fault.
The same feelings of guilt plague those of us with complex needs kiddos, even if they were born at the stereotypical times and ways. We sit here thinking 'Was it something I did during pregnancy?'. It's a guilt that hovers in the background until our kiddos struggle with something that, someone else's neuro-typical kiddo can grasp easily. It's deep and dark and we hide it behind our faith in medical professionals, behind the fight with schools and the cost of equipment.
Our ability to stand up for our kiddos against everyone who doesn't see them as they are, stems from this guilt we carry I believe. Not just us mummies but daddies too.
Daddies, sometimes the unsung heroes in my mind, carry just as much guilt (if not more) as us mummies. That isn't to say us mums have it easier or that our guilt isn't as real or heavy as the dads; it's saying that for dads, they enact their guilt in different ways and, yes, sometimes it can be worse than what we mums deal with.
Don't forget, 99% of the dads work full time, come home to take on the roll of daddy, help with bed time (well hubby does bedtime here) and, like with us, does the housework too before taking time for themselves. Not all dads do this and some even do more, but the fact is their guilt will mainly stem from not being around as much, not helping more during pregnancy, not getting that ice cream you were craving at 2am during week 13 of pregnancy. Does that then make it their fault our kiddos have the issues they do?
NO it doesn't! It makes them as human and as faultless as us! Our joint guilty feelings are the reason why we fight so hard, through so much for our kiddos; no matter what the hurdles!
Now, remember, I am only writing from the only point of views I have - mine and hubby's! I know that out there in the world, there are parents who are to blame for their kiddos problems(whatever they are) and that some don't even care about their kiddos. Yet I choose to believe that if you are reading my blog (even if some of my posts aren't all that awesome at times); that you are following the same sort of path as I am and as such, you aren't one of the parents who doesn't care.
Now, do I still blame myself for all the things R has to overcome? Even though, compared to H (who was 9 weeks early), he wasn't really all that early at 35 weeks gestation?
Yes I do still blame myself. He was my first pregnancy and I thought all those programmes I had watched from 16 years old, prepared me for everything; that I was super mum! Erm, sorry but I wasn't! I ignored pain signals when I should have listened and my birth plan - well was plain stupid when I look back; didn't want epidural because of the size of the needle, needless to say I had the epidural.
Some of my guilt has subsided over time, as we travel this journey together. Especially this week (half term), when R self regualted his sensory needs and after I read an article about autism. I do not know how valid the article was but it definitely helped me let go of some of my guilt. It was about a study being done that showed autism starts in the womb as the brain develops. It stated something along the lines of, even if no problems arose during pregnancy, this development of the brain can occur.
So, for those of us with autistic kiddos - there was nothing we could have done to stop what happened. With that I am going to leave you with my hubby's view of SEN or complex needs -
"There are no complex needs, just adults who think kids who just see the world differently, have extra needs than is seen to be normal. Those who have been told they have complex needs, whatever they may be, are just the next evolution of humankind. We are trying to stop that evolution by trying to make them fit into our mould. Let them show the world how amazing they are and the world we live in."
Subscribe to:
Posts (Atom)