Whilst Lily and I were making paper craft snowflakes this evening loads of things occurred that I felt compelled to share!
Firstly, it was unanimous, amoung our little family at least, that the 6 pointed snowflakes looked amazing when compared with the 4 pointed snowflakes.
We asked eachother why and had a nice discussion about nature, Fibonacci numbers, symmetry, tessellation, fractions and probably a couple of other things too! Win, win with a spontaneous and cool Christmas craft!
The snowflakes also brought to light a few other things unrelated to the snowflakes themselves.
Lily found it really hard. Overall. Not just one part. She could not imagine the completed snowflake in her head and even after she had cut one, she had to refold it and study what she had done in order to draw another. She also could not follow a pattern. Whilst she was designing her snowflake, she constantly unfolded and refolded, indicating again that she was unable to imagine what it may look like in the end (when unfolded). She point blank (read - after a huge meltdown), refused to use the second method we found for folding the paper (the one that created the 6 pointed snowflakes) because she thought the first method was easier. And finally, she found the cutting really stressful. She was breathing hard and then holding her breathe. She was groaning and gnarling with frustration. She was terrified she would cut her design too far and ruin it. She did actually do this a couple of times and both were snowflakes were violently screwed up and thrown across the table.
However, she is now happily sat making her snowflakes, her way and she is improving fast! Oh, and they are being stuck all over the house! :-)
During the snowflake making, Dominik came into the kitchen with his office chair, tablet, hat and headphones so that I could do his daily neurodevelopmental exercises. Amazing. I didn't even ask him to come. He wandered in and was ready to get started.
Well, that didn't last long. It really was too good to be true.
Let me explain why I think Dominik then had a huge meltdown (larger than he's experienced in a fair few weeks).
On Wednesday, we're going to see Hamilton in London. I cannot recall if I have ever mentioned his obsession with the musical in this blog, but, it's been there, for probably around 9 months now. He knows all the words to a large chunk of the songs. He has researched it's performers and writer, read parts of the Benjamin Franklin papers, learned some American History, spent hours singing the songs and has generally been very Autistic about it!
It's heavily on his mind and is basically replacing Christmas as his 'event' this year. Everything in his life revolves around 7.30pm Wednesday night. He is excited, terrified, nervous, angry, thankful and anxious all the time.
So, back to the kitchen, the reason he was unable to even start his therapy is because he started talking to me about his sleep pattern. It is all over the place and he has been trying to 'correct it' (his words, not mine). As he sat on his chair he asked me what I thought he could do to try and ensure he does not feel tired during our evening out to see Hamilton (which is in fact a late afternoon to an early morning in reality) and I answered him.
That was my mistake. He did not actually want to hear my suggestions (turn everything off, have a warm milk, put on the fan for white noise and stay in bed to relax and, hopefully at the very least, help his body understand that it is bed time now), what he wanted was a big hug and some empathy.
Soooooo, mine were not helpful suggestions in the circumstances. They were stupid, useless, a waste of time and obviously not going to work for him (his words). Sigh. He stomped off. Slammed his chair against the kitchen cupboards and slammed his bedroom door for good measure.
I probably should have seen it coming when I noticed that his actions were literally, 'too good to be true' but I didn't. I was worn out from calming and coaching Lily for half an hour. I was brain numb from talking about Fibonacci and geometry. I was excited that Dominik was doing something VOLUNTARILY that I have literally had to beg him to do every. single. day. since September. I missed the clues!
But, here I am now, analyzing what happened and seeing it all more clearly.
I think that's why I write this blog. Having no partner to reflect with means that I have to get the thoughts out somewhere! Ta-da! :-)
Dominik will be ok. I will go downstairs now and give him that hug and tell him that of course he won't feel tired and that of course he WILL NOT fall asleep on Wednesday! And that it is going to be perfect.
Thanks for reading!
N x
PS - Snowflakes also made me think of a friend who lost a loved one this week and send her a little extra prayer. Life is just so precious and fleeting, much like snowflakes themselves, so love each other and be kind. <3
PPS - Lily is writing her first manga! Just giving it a mention because otherwise I will never remember when she wrote it!
Showing posts with label empathy. Show all posts
Showing posts with label empathy. Show all posts
Monday, 18 December 2017
Wednesday, 19 July 2017
Irritating timing.
Every time I get a little distracted and disheartened with life in general, it turns around.
It is literally like I need to hit my version of 'bottom', (which isn't very low!) in order to turn it around.
I have been feeling truly disappointed with my lot lately. It is fairly uncharacteristic for me to feel pessimistic and frightened, but I have been.
On the surface everything is great though! I honestly cannot complain.
We have all that we need and we are healthy and (mostly) getting along well with each other happily.
The weather has been wonderful!
We've had a lovely family holiday in a lodge in Norfolk and were able to visit dear friends.
Lily is managing life so well it means she must be happy and stress free. Yay!
Harriet is pushing every limit she encounters in true 2 year old style! It is exhausting.
Hannon is designing games and creating his own redstone circuits whilst having agreed to go back to Scouts. Exciting times.
Dominik went to the cinema alone today (at his request), gave Hannon permission to use his PS4 whilst he was gone (arghhhhh, never happened before), had a shower before he went and loved every minute of it. So, so proud of his achievement.
The children have all been talking about their passions and what they see in their respective futures. They are all enthusiastic about their options and seem to be approaching the subject in unique ways.
Hannon is focused on being a game designer and is flowing with ideas of projects to work on with his friends.
Lily is drawing and offering her 'chibi' portraits for sale.
Dominik has asked to attend voice coaching tuition to improve his chances of becoming a professional voice actor.
Such wonderful, genuine aspirations that will allow them to live authentic lives and hopefully remain happy and safe. They all want to generate their incomes from their own talents.
They are all conscious that their choices allow them to travel in the future whilst they continue working! And they also know that they will be able to determine their own schedules to a large extent!
I've been talking about creating an income from one of my passions too, so I can completely relate to their emotions. I sometimes wish that I'd been encouraged to follow my instincts and had the freedom to develop my passions at their ages.
But I think that all of the above happened exactly because the last few weeks, until today, have been dull!
Since we returned from our holiday, we have kept our socialising to a minimum (and our spending) as we all needed to recharge, but it has made life a little quieter than usual.
Today was clearly the end of that cycle. It feels almost as if we flat-lined for a moment and then rebounded afresh!
I now realise, that for our family, a natural 'lull' is absolutely necessary in order for us to coalesce the knowledge we've each been gathering.
It's like the moment before you are finally able to make a decision about something you've been procrastinating over! And on a family sized scale!
The learning is happening for all of us all the time if we would only slow down enough to actually process each moment.
I feel so lucky to be able to offer my special needs children such a varied and interesting life.
N x
It is literally like I need to hit my version of 'bottom', (which isn't very low!) in order to turn it around.
I have been feeling truly disappointed with my lot lately. It is fairly uncharacteristic for me to feel pessimistic and frightened, but I have been.
On the surface everything is great though! I honestly cannot complain.
We have all that we need and we are healthy and (mostly) getting along well with each other happily.
The weather has been wonderful!
We've had a lovely family holiday in a lodge in Norfolk and were able to visit dear friends.
Lily is managing life so well it means she must be happy and stress free. Yay!
Harriet is pushing every limit she encounters in true 2 year old style! It is exhausting.
Hannon is designing games and creating his own redstone circuits whilst having agreed to go back to Scouts. Exciting times.
Dominik went to the cinema alone today (at his request), gave Hannon permission to use his PS4 whilst he was gone (arghhhhh, never happened before), had a shower before he went and loved every minute of it. So, so proud of his achievement.
The children have all been talking about their passions and what they see in their respective futures. They are all enthusiastic about their options and seem to be approaching the subject in unique ways.
Hannon is focused on being a game designer and is flowing with ideas of projects to work on with his friends.
Lily is drawing and offering her 'chibi' portraits for sale.
Dominik has asked to attend voice coaching tuition to improve his chances of becoming a professional voice actor.
Such wonderful, genuine aspirations that will allow them to live authentic lives and hopefully remain happy and safe. They all want to generate their incomes from their own talents.
They are all conscious that their choices allow them to travel in the future whilst they continue working! And they also know that they will be able to determine their own schedules to a large extent!
I've been talking about creating an income from one of my passions too, so I can completely relate to their emotions. I sometimes wish that I'd been encouraged to follow my instincts and had the freedom to develop my passions at their ages.
But I think that all of the above happened exactly because the last few weeks, until today, have been dull!
Since we returned from our holiday, we have kept our socialising to a minimum (and our spending) as we all needed to recharge, but it has made life a little quieter than usual.
Today was clearly the end of that cycle. It feels almost as if we flat-lined for a moment and then rebounded afresh!
I now realise, that for our family, a natural 'lull' is absolutely necessary in order for us to coalesce the knowledge we've each been gathering.
It's like the moment before you are finally able to make a decision about something you've been procrastinating over! And on a family sized scale!
The learning is happening for all of us all the time if we would only slow down enough to actually process each moment.
I feel so lucky to be able to offer my special needs children such a varied and interesting life.
N x
Wednesday, 12 August 2015
Addendum to "All arguments are NOT created equal"
Tonight, after reading a post from a member of one of the groups I belong to, I happened to look up what was meant by PACE Parenting and I tried to find out what a PACE course involved.
Well, I was fairly gob-smacked when I started reading to be truthful!
The description resonated so strongly with me that I felt my breath catch. How had I not heard of this?!
It was describing exactly how our house functions when we are all trying our best! These letters and the principles they represent are our conscious goal as a family.
I genuinely thought that what I do is just called 'parenting'. Apparently not! Which led me to thinking about how that could have happened.
How I could have such a minority idea of what 'parenting' is that it requires teaching to other parents?
To be honest, I pretty much always feel 'controversial' when discussing parenting with people...although, I am meeting a fair few super mums these days who are on the same page. You know who you are! ;-)
In truth though, 'parenting' is itself a far too complicated a word. It can be (and often is) easily manipulated by the mass media/culture depending on the last 'research' (see below).
There is always a new 'trend' that parents 'must' conform to or else they are risking possible isolation and/or ridicule because of their lack of 'parenting' skills. Sigh.
I do not subscribe to many things that are considered 'mainstream' and for me, 'parenting' simply means loving unconditionally. That's it. Simple right?
Well, guess what? Loving unconditionally is what PACE describes and that is what I tried really hard to explain in my last post (even though I'm not sure that I really did)!
I don't have to worry now though because here is an excellent description of PACE
By the way, I think the term PACE is now becoming widely used because the term 'attachment parenting' (that's the term I may use sometimes to talk about our ideas and philosophy) has become somewhat disparaged and is perceived to be a little 'fluffy' in modern times (*cough* thanks to the main stream media *cough*).
Well, not to worry because now here comes the latest 'parenting' trend in the form of PACE! Excellent stuff! It can't come soon enough.
Let's spread the love! <3
Not sure I should type the next paragraph because my Aspieness is confused about social convention (no shit right, please see above) and it is now too late to call Cara and ask her for her advice, so here goes nothing!
If any of you reading this would like to contact me to talk about how this works for your little people, with or without complex needs, please do get in touch, I'd love to think it through with you.
I guess you could say it was my 'gift' (as someone on the Autistic Spectrum) to be able to see these principles and apply them (fairly) easily to my own family.
Anyways, if anyone is still reading, thanks.
Take good care,
N x
EDITED TO ADD:
All of the courses I am finding about PACE appear to be aimed at those who are foster carers or adoptive parents, or people working in child protection fields and therapeutic and supportive roles etc. Very few courses are targeting actual biological parents. This is because the focus of 'attachment parenting' in these instances is NOT related to special needs children, nor even children in the 'majority'.
PACE is being 'sold' by people working for adoption agencies/fostering agencies to Local Authorities in order to support their fostering/adoption processes. Obviously, this is great news for all those children.
But, once again, I am left thinking that for some reason, the 'establishment' are perhaps hesitant to give these skills to everyone, sorry, I mean every parent as well as to everyone 'becoming' a parent if you know what I mean.
Imagine a world where the birth parents of all these children who find themselves in foster care were taught the principles of PACE? Surely it would have had a positive effect in at least some of the cases? Hopefully one day we will find out.
I am so sad right now because I know my children do not have any attachment issues (I parent using PACE principles already, doh) but what they do have are complex special needs governed by their senses and neurological conditions (causing me to parent this way in the first place if I'm being truly honest, they taught me everything I know) and if other parents don't know any of this yet (that just loving, accepting, understanding, listening, empathising etc etc works miracles) then they need to be told too!
So, please, fellow parents (and especially those of you with children with special needs), do not feel that you are being criticised by the mainstream and do not feel that you have somehow 'caused' your child's special needs just because so many of their difficulties cross paths with those who have suffered some kind of attachment malfunction.
What has in fact happened is that you now know that your child was born with these 'special needs' in order to teach you these important principles themselves...for free! Voluntarily! Not via some crazy expensive, mostly inaccessible course! Aren't we lucky?!
Kids ALL need showering with the principles of PACE (playfulness, acceptance, curiosity and empathy), shit, all ADULTS need some extra loving from the PACE principles too!
Go on, try it.
N x
PS - I really am going to sleep now.
Well, I was fairly gob-smacked when I started reading to be truthful!
The description resonated so strongly with me that I felt my breath catch. How had I not heard of this?!
It was describing exactly how our house functions when we are all trying our best! These letters and the principles they represent are our conscious goal as a family.
I genuinely thought that what I do is just called 'parenting'. Apparently not! Which led me to thinking about how that could have happened.
How I could have such a minority idea of what 'parenting' is that it requires teaching to other parents?
To be honest, I pretty much always feel 'controversial' when discussing parenting with people...although, I am meeting a fair few super mums these days who are on the same page. You know who you are! ;-)
In truth though, 'parenting' is itself a far too complicated a word. It can be (and often is) easily manipulated by the mass media/culture depending on the last 'research' (see below).
There is always a new 'trend' that parents 'must' conform to or else they are risking possible isolation and/or ridicule because of their lack of 'parenting' skills. Sigh.
I do not subscribe to many things that are considered 'mainstream' and for me, 'parenting' simply means loving unconditionally. That's it. Simple right?
Well, guess what? Loving unconditionally is what PACE describes and that is what I tried really hard to explain in my last post (even though I'm not sure that I really did)!
I don't have to worry now though because here is an excellent description of PACE
By the way, I think the term PACE is now becoming widely used because the term 'attachment parenting' (that's the term I may use sometimes to talk about our ideas and philosophy) has become somewhat disparaged and is perceived to be a little 'fluffy' in modern times (*cough* thanks to the main stream media *cough*).
Well, not to worry because now here comes the latest 'parenting' trend in the form of PACE! Excellent stuff! It can't come soon enough.
Let's spread the love! <3
Not sure I should type the next paragraph because my Aspieness is confused about social convention (no shit right, please see above) and it is now too late to call Cara and ask her for her advice, so here goes nothing!
If any of you reading this would like to contact me to talk about how this works for your little people, with or without complex needs, please do get in touch, I'd love to think it through with you.
I guess you could say it was my 'gift' (as someone on the Autistic Spectrum) to be able to see these principles and apply them (fairly) easily to my own family.
Anyways, if anyone is still reading, thanks.
Take good care,
N x
EDITED TO ADD:
All of the courses I am finding about PACE appear to be aimed at those who are foster carers or adoptive parents, or people working in child protection fields and therapeutic and supportive roles etc. Very few courses are targeting actual biological parents. This is because the focus of 'attachment parenting' in these instances is NOT related to special needs children, nor even children in the 'majority'.
PACE is being 'sold' by people working for adoption agencies/fostering agencies to Local Authorities in order to support their fostering/adoption processes. Obviously, this is great news for all those children.
But, once again, I am left thinking that for some reason, the 'establishment' are perhaps hesitant to give these skills to everyone, sorry, I mean every parent as well as to everyone 'becoming' a parent if you know what I mean.
Imagine a world where the birth parents of all these children who find themselves in foster care were taught the principles of PACE? Surely it would have had a positive effect in at least some of the cases? Hopefully one day we will find out.
I am so sad right now because I know my children do not have any attachment issues (I parent using PACE principles already, doh) but what they do have are complex special needs governed by their senses and neurological conditions (causing me to parent this way in the first place if I'm being truly honest, they taught me everything I know) and if other parents don't know any of this yet (that just loving, accepting, understanding, listening, empathising etc etc works miracles) then they need to be told too!
So, please, fellow parents (and especially those of you with children with special needs), do not feel that you are being criticised by the mainstream and do not feel that you have somehow 'caused' your child's special needs just because so many of their difficulties cross paths with those who have suffered some kind of attachment malfunction.
What has in fact happened is that you now know that your child was born with these 'special needs' in order to teach you these important principles themselves...for free! Voluntarily! Not via some crazy expensive, mostly inaccessible course! Aren't we lucky?!
Kids ALL need showering with the principles of PACE (playfulness, acceptance, curiosity and empathy), shit, all ADULTS need some extra loving from the PACE principles too!
Go on, try it.
N x
PS - I really am going to sleep now.
Monday, 10 August 2015
All arguments are NOT created equal!
Just a quick thought really (I'm sleepy).
Not all arguments are created equally.
Sometimes my kids and I argue/bicker/fight/disagree and any other adjectives you can think of for being of opposing views.
These events can manifest in many different ways. Shouting. Stomping. Slamming. Throwing. Screaming. Stand(ing) off (or is it stand offing). Hitting. And probably more I'm sure. You get the idea right?
But sometimes, just sometimes, they (we) are arguing in a way that is different to the ways listed above.
They (we) are actually having a discussion about something outside of their (our) own lives. It is incredible to witness (be part of) and I am sure that these discussions become more coherent and more structured the more of the 'less desirable' types of scuffles they actually have! To have a discussion, the more information you have to draw from, the better things are for you. My kids are learning this as they move away from violence and frustration towards discussion and negotiation.
It is more than just opinions, gossip, finger-pointing, name-calling, childish disagreements etc. It is 'grown-up' (eurgh) and 'mature' (eurgh) arguing!
I'm not sure whether or not this phenomenon (at ages 8 and 6) is brought about by us being in a different environment to most (accepting, familiar, comforting, safe, loving) or whether or not most 6-8 year olds do this too? I sure do hope they all do! It is so interesting to be a part of and really bodes well for the future.
But, when my middle two children disagree, it can go every which way and therefore, sometimes, thankfully, does go the way of adult (eurgh) discourse (picture Sorkin, the Wachowskis etc). It is civil, structured, to the point, well reasoned and interesting to listen to. They ask one another poignant questions. They use persuasive language. They negotiate every little detail. They are always on the lookout for the catch!
I'm not sure any of this will work in their favour in the short-term to be honest, given how patronising adults are in general towards children, but, for the time being at least, they are articulate and curious and learning lots...yay!
Maybe that is why we love our unschooling so much? Having got rid of any preconceived ideas that because I have been alive longer, I know more, the children's arguments all become 'valid'.
By the time my kids make their way out properly into the world they will simply have learned to accept and be themselves because they have been allowed to be (without fear of further reprisal maybe because my house does not endorse 'punishment' for punnishments sake)?
My house teaches you that no one knows more about you than you do.
If you know yourself, you're more than capable of disagreeing calmly and patiently and this is because you do not feel threatened in any way. You know who you are and you are competing with no one but yourself from yesterday.
You are not attached to the thoughts/opinions that you may have formed over the years. You understand that they are transitory.
You are simply attached to your right to have those thoughts and opinions and your right to articulate them.
If new information arises, great! More to think about and consider. Win win situation so long as you are not too attached to your existing thoughts.
So in my opinion, all arguments are not created 'equal' but they are all valid forms of expression which clearly serve a purpose.
They move you towards self-knowldge.
Food for thought.
N x
PS - Just in case you are going away with the impression that my kids (and I) argue a lot, let me put it into context.
We are together pretty much 24/7.
We are awake and co-operating for approx 14 hrs per day. every day.
The things we do change. The people we see change. But, we mostly do things together, barring the times D does not join us (he needs far more quiet time than us as you already know).
There is a fight of some description probably every day, yes.
There are 5 of us in our house (one of them being a 6 month old baby who is obviously always reasonable and easy to deal with), plus a carpet-destroying cat (don't even get me started) and an incontinent elderly American Bulldog (urgh..laugh if you like but you'd hate it too). Things can get hectic!
But, I reckon, if you a divided the number of fights by the number of hours spent together, and then compared that number to a more typical population, we'd look pretty impressive.
Not all arguments are created equally.
Sometimes my kids and I argue/bicker/fight/disagree and any other adjectives you can think of for being of opposing views.
These events can manifest in many different ways. Shouting. Stomping. Slamming. Throwing. Screaming. Stand(ing) off (or is it stand offing). Hitting. And probably more I'm sure. You get the idea right?
But sometimes, just sometimes, they (we) are arguing in a way that is different to the ways listed above.
They (we) are actually having a discussion about something outside of their (our) own lives. It is incredible to witness (be part of) and I am sure that these discussions become more coherent and more structured the more of the 'less desirable' types of scuffles they actually have! To have a discussion, the more information you have to draw from, the better things are for you. My kids are learning this as they move away from violence and frustration towards discussion and negotiation.
It is more than just opinions, gossip, finger-pointing, name-calling, childish disagreements etc. It is 'grown-up' (eurgh) and 'mature' (eurgh) arguing!
I'm not sure whether or not this phenomenon (at ages 8 and 6) is brought about by us being in a different environment to most (accepting, familiar, comforting, safe, loving) or whether or not most 6-8 year olds do this too? I sure do hope they all do! It is so interesting to be a part of and really bodes well for the future.
But, when my middle two children disagree, it can go every which way and therefore, sometimes, thankfully, does go the way of adult (eurgh) discourse (picture Sorkin, the Wachowskis etc). It is civil, structured, to the point, well reasoned and interesting to listen to. They ask one another poignant questions. They use persuasive language. They negotiate every little detail. They are always on the lookout for the catch!
I'm not sure any of this will work in their favour in the short-term to be honest, given how patronising adults are in general towards children, but, for the time being at least, they are articulate and curious and learning lots...yay!
Maybe that is why we love our unschooling so much? Having got rid of any preconceived ideas that because I have been alive longer, I know more, the children's arguments all become 'valid'.
By the time my kids make their way out properly into the world they will simply have learned to accept and be themselves because they have been allowed to be (without fear of further reprisal maybe because my house does not endorse 'punishment' for punnishments sake)?
My house teaches you that no one knows more about you than you do.
If you know yourself, you're more than capable of disagreeing calmly and patiently and this is because you do not feel threatened in any way. You know who you are and you are competing with no one but yourself from yesterday.
You are not attached to the thoughts/opinions that you may have formed over the years. You understand that they are transitory.
You are simply attached to your right to have those thoughts and opinions and your right to articulate them.
If new information arises, great! More to think about and consider. Win win situation so long as you are not too attached to your existing thoughts.
So in my opinion, all arguments are not created 'equal' but they are all valid forms of expression which clearly serve a purpose.
They move you towards self-knowldge.
Food for thought.
N x
PS - Just in case you are going away with the impression that my kids (and I) argue a lot, let me put it into context.
We are together pretty much 24/7.
We are awake and co-operating for approx 14 hrs per day. every day.
The things we do change. The people we see change. But, we mostly do things together, barring the times D does not join us (he needs far more quiet time than us as you already know).
There is a fight of some description probably every day, yes.
There are 5 of us in our house (one of them being a 6 month old baby who is obviously always reasonable and easy to deal with), plus a carpet-destroying cat (don't even get me started) and an incontinent elderly American Bulldog (urgh..laugh if you like but you'd hate it too). Things can get hectic!
But, I reckon, if you a divided the number of fights by the number of hours spent together, and then compared that number to a more typical population, we'd look pretty impressive.
Sunday, 28 June 2015
Our latest experiment!
It occurred to me today that it might be worth mentioning our latest (somewhat unusual) project.
For a long time now my oldest son, Domink (PDA, ASD, SPD, APD, dyspriaxia, ADHD, misophonia, urgh, and the list goes on but basically simply adds up to 'hypersensitive in all areas of perception' and 'n'th degree human being! Perhaps an evolutionary step?! Who knows, but these young people are coming through loud and clear and telling us that society is breaking down...they can't live in it any more!!! But ask yourself this, is the world they would prefer worse than the status quo?
Woah, massive sidetrack, sorry.
So, yes, Dominik has been asking for a room of his own. Specifically, the front room in our house. Traditionally, the living room I guess.
I have resisted and resisted and have kept telling myself that it would make life far, far worse as he would then have to self regulate his computer usage, his space and his time alone. Massive changes. Big gulp.
So, back in May, I finally agreed, on the proviso that he gave me his months allowance toward the furniture, bed and mattress and that he helped me moving his things into his new room. He agreed and we bought what we needed.
We then came to a hurdle. I did not have anyone who would be able to help me move the big sofa upstairs to what has now become our sitting room/living room/Hannon (and oftentimes, Lily's) bedroom.
I soon bit the bullet (amidst all the nagging from Dominik) at the beginning of June and paid someone. He did a few other jobs that had been depressing me too so overall, I guess it made us all feel much better!
Dominik moved downstairs just over two weeks ago.
The first few days were very rocky!!! I was stupid enough to push my luck and unfortunately, Dominik had a massive meltdown in public, which he hasn't done in an extremely long time.
I'd forgotten what they were like to be honest and I don't miss them one bit!
So, yes, I encouraged him to come out with us on 'moving day', even though he had already struggled to hold it together all morning and had been particularly dictatorial. Sigh, When will I learn?
He really wanted to please me (as a thank you for getting his room done) so he made himself come.
Well, yup, we learnt a valuable lesson at the same moment that day and it has changed our relationship in a big way and for the better. We both now know to be more mindful and to not try to be 'normal' even when it appears to be the right thing to do. We knew we had tried too hard and we failed.
Right moving on. Since that first day, life has changed.
Dominik is spending more time out of his 'room' than ever before! He even sat in our new living room and watched a WHOLE MOVIE with us! Without freaking out and spoiling it for everyone (do your kids who are on the spectrum do that, or is it peculiar to just mine)? He did meltdown as soon as I left to get everyone a drink but, nevertheless, it was a massive improvement.
He is choosing how he spends his time really well. Yes, he is still playing a lot, but it is different now. With the constant threat of it being taken away gone, he is clinging to it far less ferociously.
He will eat with me.
He will come and chat with me in the kitchen.
He came out for TWO picnics over the last week.
He played a game with me!!
He is a godsend when it comes to helping me with Harriet. He is by far the most amazing with her....she always laughs for him! She adores her biggest brother and he her.
Hmmm, he did have a meltdown yesterday though.
He desperately wanted to see 'Minions' and I said yes without hesitating and booked us tickets Thursday and we went Friday.
Well, he lost the plot before we left because we wore minion glasses and Lily went one step further and face painted herself yellow!!!
I thought it was brilliant and encouraged her. Well, Dominik went crazy saying he would be embarrassed and that it was "****ing stupid". He ranted and raved and demanded to be able to punch Lily or else he couldn't go. He was being completely outrageous. He ran off with the car keys at one point!!! How did he get those I hear you ask? Well, I had given them to him so he could go and get in the car first to try to avoid a fight! Yes, that was stupid!!! Hannon even told me so! Hahaahahahah! He insisted he wasn't going and I said fine, my mum was with us, so he could stay with her.
So, I get the keys back from him and he swipes at Lily, I escort her out to the car and belt her into the front seat. Dominik decides he wants to be in the third row (exactly why I need one, DLA, do you hear me) and I put down the seats and get him in sharpish.
Harriet and Hannon get in the middle. We're all set! Deep breath.
As we pull away, Dominik is in floods of tears.
He could not apologise enough.
He was devastated and hyperventilating.
I told him how much I loved him.
Hannon told him that it was ok and that he understood that it was just a part of his Apsergers.
Lily said she forgave him.
I told him it was in the past. That we got it, that we were really proud of him for coming with us, that we knew he could do it and that it was time to go and enjoy the film together.
It was plain sailing from there, with the three big kids behaving impeccably from there until we got back to the car. Harriet was excellent the whole time.
Lily proceeded to fall apart once back at the car.
Hey ho, we talked her down and laughed about how Dominik is more like to freak before we go out, Hannon is most likely to do it while we are out, and Lily, without fail, will do it as soon as we are leaving and she lets her guard down! So strange! I tend to do on the way out and on the way in! Not my best moment and definitely the times when I am most likely to lose my temper and need to take a time out!
So yeah, I think giving him what he wanted is paying off. My house is a happier place.
Lily loves being able to stay with Hannon (and even though he says he hates it, he keeps letting her come back even though I back him 100% if he doesn't want her stay with him).
Hannon loves that I can go and sit with him lots more during the day :-)
He can read for me now too in a quiet, comfortable space, and that is excellent. Massive hurdle jumped. He even read the promise at his Cubs going up ceremony better than the other three boys going up with him. So proud because when he started Beavers he was one of the only ones who did not read at all. Look at what he's done! He read a page to me a few days ago from "Soul Eater" and the only words on the page that he could not read were 'Pharaoh' and 'tornado'.
(NB an article I came across today adds to the idea of self-teaching in general.)
Dominik is so happy now he controls his own space.
He is even putting washing away, emptying his bin and bringing out plates and cups. Having ownership has helped in a big way.
His self-awareness with regard to his meltdown Friday was inspirational. I love him so much. I cannot believe how far he has come.
He was complimented by his hairdresser this week too for being able to sit so still and being so polite.
He has been going to the shop confidently by himself.
He has sworn less.
He has been quieter.
He has been sleeping more.
He has been nicer to live with.
But still, and most importantly, he really is so much happier.
The gamble is paying off ... for the time being at least.
Sending out progressive vibes for you all.
Thanks for reading.
N x
Some cool moments from the past two weeks.
For a long time now my oldest son, Domink (PDA, ASD, SPD, APD, dyspriaxia, ADHD, misophonia, urgh, and the list goes on but basically simply adds up to 'hypersensitive in all areas of perception' and 'n'th degree human being! Perhaps an evolutionary step?! Who knows, but these young people are coming through loud and clear and telling us that society is breaking down...they can't live in it any more!!! But ask yourself this, is the world they would prefer worse than the status quo?
Woah, massive sidetrack, sorry.
So, yes, Dominik has been asking for a room of his own. Specifically, the front room in our house. Traditionally, the living room I guess.
I have resisted and resisted and have kept telling myself that it would make life far, far worse as he would then have to self regulate his computer usage, his space and his time alone. Massive changes. Big gulp.
So, back in May, I finally agreed, on the proviso that he gave me his months allowance toward the furniture, bed and mattress and that he helped me moving his things into his new room. He agreed and we bought what we needed.
We then came to a hurdle. I did not have anyone who would be able to help me move the big sofa upstairs to what has now become our sitting room/living room/Hannon (and oftentimes, Lily's) bedroom.
I soon bit the bullet (amidst all the nagging from Dominik) at the beginning of June and paid someone. He did a few other jobs that had been depressing me too so overall, I guess it made us all feel much better!
Dominik moved downstairs just over two weeks ago.
The first few days were very rocky!!! I was stupid enough to push my luck and unfortunately, Dominik had a massive meltdown in public, which he hasn't done in an extremely long time.
I'd forgotten what they were like to be honest and I don't miss them one bit!
So, yes, I encouraged him to come out with us on 'moving day', even though he had already struggled to hold it together all morning and had been particularly dictatorial. Sigh, When will I learn?
He really wanted to please me (as a thank you for getting his room done) so he made himself come.
Well, yup, we learnt a valuable lesson at the same moment that day and it has changed our relationship in a big way and for the better. We both now know to be more mindful and to not try to be 'normal' even when it appears to be the right thing to do. We knew we had tried too hard and we failed.
Right moving on. Since that first day, life has changed.
Dominik is spending more time out of his 'room' than ever before! He even sat in our new living room and watched a WHOLE MOVIE with us! Without freaking out and spoiling it for everyone (do your kids who are on the spectrum do that, or is it peculiar to just mine)? He did meltdown as soon as I left to get everyone a drink but, nevertheless, it was a massive improvement.
He is choosing how he spends his time really well. Yes, he is still playing a lot, but it is different now. With the constant threat of it being taken away gone, he is clinging to it far less ferociously.
He will eat with me.
He will come and chat with me in the kitchen.
He came out for TWO picnics over the last week.
He played a game with me!!
He is a godsend when it comes to helping me with Harriet. He is by far the most amazing with her....she always laughs for him! She adores her biggest brother and he her.
Hmmm, he did have a meltdown yesterday though.
He desperately wanted to see 'Minions' and I said yes without hesitating and booked us tickets Thursday and we went Friday.
Well, he lost the plot before we left because we wore minion glasses and Lily went one step further and face painted herself yellow!!!
I thought it was brilliant and encouraged her. Well, Dominik went crazy saying he would be embarrassed and that it was "****ing stupid". He ranted and raved and demanded to be able to punch Lily or else he couldn't go. He was being completely outrageous. He ran off with the car keys at one point!!! How did he get those I hear you ask? Well, I had given them to him so he could go and get in the car first to try to avoid a fight! Yes, that was stupid!!! Hannon even told me so! Hahaahahahah! He insisted he wasn't going and I said fine, my mum was with us, so he could stay with her.
So, I get the keys back from him and he swipes at Lily, I escort her out to the car and belt her into the front seat. Dominik decides he wants to be in the third row (exactly why I need one, DLA, do you hear me) and I put down the seats and get him in sharpish.
Harriet and Hannon get in the middle. We're all set! Deep breath.
As we pull away, Dominik is in floods of tears.
He could not apologise enough.
He was devastated and hyperventilating.
I told him how much I loved him.
Hannon told him that it was ok and that he understood that it was just a part of his Apsergers.
Lily said she forgave him.
I told him it was in the past. That we got it, that we were really proud of him for coming with us, that we knew he could do it and that it was time to go and enjoy the film together.
It was plain sailing from there, with the three big kids behaving impeccably from there until we got back to the car. Harriet was excellent the whole time.
Lily proceeded to fall apart once back at the car.
Hey ho, we talked her down and laughed about how Dominik is more like to freak before we go out, Hannon is most likely to do it while we are out, and Lily, without fail, will do it as soon as we are leaving and she lets her guard down! So strange! I tend to do on the way out and on the way in! Not my best moment and definitely the times when I am most likely to lose my temper and need to take a time out!
So yeah, I think giving him what he wanted is paying off. My house is a happier place.
Lily loves being able to stay with Hannon (and even though he says he hates it, he keeps letting her come back even though I back him 100% if he doesn't want her stay with him).
Hannon loves that I can go and sit with him lots more during the day :-)
He can read for me now too in a quiet, comfortable space, and that is excellent. Massive hurdle jumped. He even read the promise at his Cubs going up ceremony better than the other three boys going up with him. So proud because when he started Beavers he was one of the only ones who did not read at all. Look at what he's done! He read a page to me a few days ago from "Soul Eater" and the only words on the page that he could not read were 'Pharaoh' and 'tornado'.
(NB an article I came across today adds to the idea of self-teaching in general.)
Dominik is so happy now he controls his own space.
He is even putting washing away, emptying his bin and bringing out plates and cups. Having ownership has helped in a big way.
His self-awareness with regard to his meltdown Friday was inspirational. I love him so much. I cannot believe how far he has come.
He was complimented by his hairdresser this week too for being able to sit so still and being so polite.
He has been going to the shop confidently by himself.
He has sworn less.
He has been quieter.
He has been sleeping more.
He has been nicer to live with.
But still, and most importantly, he really is so much happier.
The gamble is paying off ... for the time being at least.
Sending out progressive vibes for you all.
Thanks for reading.
N x
Some cool moments from the past two weeks.
On our way to see 'Minions'.
Lily and Hannon out with their Dad.
Dominik photo bombing me and Harriet!
Tuesday, 12 May 2015
Observation without assumption
Sunday we had a visitor.
Ordinarily this would not be blog worthy material but, I mention it (mostly) because she has been such an important part of our journey (and instrumental in furthering my understanding of my children), and also because she is such an inspirational lady.
Her name is Felicity Evans. Yes, I have mentioned her before here in my blog-life, but she certainly deserves another mention today. Her visits are fleeting and far between due to the fact that she still works full-time at Nature Kids whilst also watching over some of those children who have long since left her care and can no longer even be called children!
I open the door to find her laden with bags (as always)! She has a plethora of outdoor toys (shuttle cocks, hula hoops, bats, balls, boomerangs and more), clothes for Harriet and healthy snacks for all (serving to remind me that I must do better in this regard). She never fails to delight us all upon her arrival. She seems to have an instinct for what we all want/need and I marvel at her intuition.
A visit from Felicity is valuable for me on so many levels. She 'sees' my children for one! Such a revelation. She also never fails to notice just how intricately I manage my household (reminding me that true professionals make whatever it is they are doing look easy). She delights in mine and my children's idiosyncrasies and allows us all to be completely ourselves.
Let's flash to when she drew up for a moment in order to illustrate this better.
I want to paint a picture of what Dominik was doing, literally, as he watched her pull up in her car.
Background -
His little brother broke his television a couple of months ago so, I put a claim to our insurance company and was given the money to replace it. I did this and I 'upgraded' it while I was at it. It is much bigger and has much better picture quality than his old one did.
The picture quality is where the problem has arisen and Dominik is convinced he should have the new television because 'he cares more about the graphics' and his 'PS4 has the ability to make use of those better graphics and the PS3 doesn't'.
Both of these things are indeed true.
However, Dominik was offered a new television at Christmas which he turned down in favour of the PS4. Fair enough. End of discussion as far as I am concerned.
Fast forward to Sunday.
Dominik begins chasing Hannon around the house screaming and swearing at the top of his voice, that he is going to swap the television for his and that is that. We have already been over this dozens of times at this point and Dominik knows that I am NOT going to change my mind. For once, Hannon is going to have something brand new and excellent all for himself.
So, I open my front door as I run past it (baby in arms) trying to intercept Dominik and free Hannon before it turns violent. I scream "Come in!" as I pass. Dominik now has Hannon cornered in the kitchen where he is cowering under the table. Bugger.
I manage to put myself between them for long enough that Hannon can escape back upstairs to sanctuary.
Felicity has come in and as she enters the kitchen. I introduce her to Harriet. Meanwhile, Dominik is still swearing and shouting at me about the television.
I do my best to empathise and console him (this works most of the time) but to no avail. He drops to the floor and crawls under the table. I try to coax him out with promises of pineapple and strawberries and by encouraging him to smile at Harriet, but he is having none of it today. Oh well. I look at Felicity and she beckons me to leave him be, so I do.
We continue our 'Hello's' and within about 3 minutes Dominik has crawled out from under the table (perhps sensing that it is safe to do so?), with his hand covering his face declaring that he doesn't want to see anyone and just wants to be alone. We watch him go.
Felicity then quietly comments on how calmly I handled the situation and, more importantly, she points out how amazingly quickly and well Dominik handled the situation and was able to self-regulate and calm himself down.
She is right. In recent weeks Dominik has been far more capable of regulating himself on lots of levels (although not all as the incident in the woods evidenced). He no longer eats copious amounts of rubbish food, he steps away from the screen when he needs to, he comes out with us far more regularly (provided it is not too far in the car), he showers when he thinks he needs to (this isn't anywhere near as often as I think he needs to, but, well, it's a start) and he knows what actions to take when he feels himself losing control.
What an amazing achievement! Some people arrive at adulthood, with no special needs whatsoever and can't manage to do that.
Thank you Felicity for helping me consciously observe Dominik.
Thanks for reading and please, if you have any thoughts, please do share them in the comments or by email.
Take good care.
N x
Ordinarily this would not be blog worthy material but, I mention it (mostly) because she has been such an important part of our journey (and instrumental in furthering my understanding of my children), and also because she is such an inspirational lady.
Her name is Felicity Evans. Yes, I have mentioned her before here in my blog-life, but she certainly deserves another mention today. Her visits are fleeting and far between due to the fact that she still works full-time at Nature Kids whilst also watching over some of those children who have long since left her care and can no longer even be called children!
I open the door to find her laden with bags (as always)! She has a plethora of outdoor toys (shuttle cocks, hula hoops, bats, balls, boomerangs and more), clothes for Harriet and healthy snacks for all (serving to remind me that I must do better in this regard). She never fails to delight us all upon her arrival. She seems to have an instinct for what we all want/need and I marvel at her intuition.
A visit from Felicity is valuable for me on so many levels. She 'sees' my children for one! Such a revelation. She also never fails to notice just how intricately I manage my household (reminding me that true professionals make whatever it is they are doing look easy). She delights in mine and my children's idiosyncrasies and allows us all to be completely ourselves.
Let's flash to when she drew up for a moment in order to illustrate this better.
I want to paint a picture of what Dominik was doing, literally, as he watched her pull up in her car.
Background -
His little brother broke his television a couple of months ago so, I put a claim to our insurance company and was given the money to replace it. I did this and I 'upgraded' it while I was at it. It is much bigger and has much better picture quality than his old one did.
The picture quality is where the problem has arisen and Dominik is convinced he should have the new television because 'he cares more about the graphics' and his 'PS4 has the ability to make use of those better graphics and the PS3 doesn't'.
Both of these things are indeed true.
However, Dominik was offered a new television at Christmas which he turned down in favour of the PS4. Fair enough. End of discussion as far as I am concerned.
Fast forward to Sunday.
Dominik begins chasing Hannon around the house screaming and swearing at the top of his voice, that he is going to swap the television for his and that is that. We have already been over this dozens of times at this point and Dominik knows that I am NOT going to change my mind. For once, Hannon is going to have something brand new and excellent all for himself.
So, I open my front door as I run past it (baby in arms) trying to intercept Dominik and free Hannon before it turns violent. I scream "Come in!" as I pass. Dominik now has Hannon cornered in the kitchen where he is cowering under the table. Bugger.
I manage to put myself between them for long enough that Hannon can escape back upstairs to sanctuary.
Felicity has come in and as she enters the kitchen. I introduce her to Harriet. Meanwhile, Dominik is still swearing and shouting at me about the television.
I do my best to empathise and console him (this works most of the time) but to no avail. He drops to the floor and crawls under the table. I try to coax him out with promises of pineapple and strawberries and by encouraging him to smile at Harriet, but he is having none of it today. Oh well. I look at Felicity and she beckons me to leave him be, so I do.
We continue our 'Hello's' and within about 3 minutes Dominik has crawled out from under the table (perhps sensing that it is safe to do so?), with his hand covering his face declaring that he doesn't want to see anyone and just wants to be alone. We watch him go.
Felicity then quietly comments on how calmly I handled the situation and, more importantly, she points out how amazingly quickly and well Dominik handled the situation and was able to self-regulate and calm himself down.
She is right. In recent weeks Dominik has been far more capable of regulating himself on lots of levels (although not all as the incident in the woods evidenced). He no longer eats copious amounts of rubbish food, he steps away from the screen when he needs to, he comes out with us far more regularly (provided it is not too far in the car), he showers when he thinks he needs to (this isn't anywhere near as often as I think he needs to, but, well, it's a start) and he knows what actions to take when he feels himself losing control.
What an amazing achievement! Some people arrive at adulthood, with no special needs whatsoever and can't manage to do that.
Thank you Felicity for helping me consciously observe Dominik.
Thanks for reading and please, if you have any thoughts, please do share them in the comments or by email.
Take good care.
N x
Friday, 12 December 2014
Misunderstanding and Prejudice.
As a mum of extra-ordinary, special needs children, it is increasingly difficult for me to read countless stories on a daily basis about the amount of misunderstanding and prejudice that is out there in the world of 'professionals'
Everyday I am corresponding with mothers (and some fathers) who are at the end of their tether (and sanity in some cases) when it comes to trying to communicate the needs of their children with those who are meant to be helping them.
There is a stunning lack of empathy and understanding amongst professionals when it comes to supporting a child's sensory, emotional and physical needs. This is particularly evident in the educational establishment, not to mention the paediatric setting and don't even get me started on Social Services.
Let me preface my criticism with this thought - of course there are some amazing professionals out there in the country (and world) but unfortunately they are few and far between. Couple this lack of professional understanding with a parents lack of medical vocabulary, and it can get very adversarial very quickly with the parent often being blamed for their child's needs.
The parents I am corresponding with are telling me that those charged with the safety, education and well-being of their children are simply not listening to them.
They are almost unanimous in their cries of, "They think I'm a bad parent." "They say I lack the skills to the manage my child effectively." "They think he/she is just naughty/attention seeking/dramatic/uncooperative." And the list goes on and is exacerbated by a further lack of adequate diagnosis from the paediatric teams. This is particularly true in the case of Pathological Demand Avoidance which is not in the manual and is therefore 'not even a real condition' but simply a parents excuse for poor behaviour. As a side note, not all parts of the country refuse to diagnose PDA making it even harder for parents to figure out where to turn.
Parents often face the above charges without the professional having spent much more than a few hours with their child and even when parents present video evidence, behaviour diaries and testimony from others who care for their child they are still ignored. How can this be?
The professional literature would have us believe that WE are the experts on our children (and of course, we are) and yet in reality, we are ridiculed, belittled and patronised and, more often than not, sent on parenting courses which, in my opinion, is the worst insult of all, especially if you are the parent of more than one child and the others are 'conforming' and 'behaving well' with no obvious difficulties. Surely this alone indicates that it is not the fault of the parent?
My son has Sensory Processing Disorder (a condition commonly diagnosed alongside an ASD) and he often needs deep pressure, movement breaks, quiet time, something to chew or fiddle with and more sensory feedback from his environment (a sensory diet). He can react violently to loud noises, bright lights, too many people and strong smells. As his mum, I know what might cause extreme reactions and I am able to monitor and control his environment when necessary to avoid the sensory overload. I know when he needs his ear-defenders or his chewing gum or even a great big squeeze!
I don't think these adaptations are unreasonable if it allows him to regulate himself and participate in 'normal' activities! They are a necessary part of his 'therapy' and have a huge impact on his behaviour. I think they should be respected, just as you would allow a diabetic to take their insulin, or a wheelchair user to be able to use a lift. Just because they are not visible, it does not mean they are not real.
Now, why can't the professionals accept and meet these needs too? If my son were at school, I would send him armed with a list of strategies and techniques to give to the professionals in order to help them understand and support him. I would give them a very long tip sheet about PDA and how best to get him on board with any given task so that he stands the best chance of being able to comply and enjoy what he is doing. What parent wouldn't?
However, the chances are, my carefully though-out tip sheet and long list of successful strategies would be ignored/forgotten in amongst the mass of other tasks that teachers/TA's have to do in a day.
Fair enough, I guess. They do have a lot to do (and lots of other needs to take into account) but, if they do not utilise our suggestions, surely the resulting punishment of our children is discrimination? They are inevitably punishing our children for their disability! How can this ever be acceptable?
I read about illegal exclusions and draconian punishments DAILY which are a direct result of teachers and TA's being unable to meet the needs of our very special children. I admit, these needs are high, but the professionals have a duty of care, and they accept that duty of care and when they fail to meet the standard of care our children deserve, what are the consequences?
The consequences are disastrous. Not only for the teachers, TA's and other children affected during the school day, but also for the child in question and just as importantly, for the child's family when the school day ends.
When that child goes home they will need to release all that tension, frustration, upset and sensory overload somehow. They will more often than not, explode through the door at home and unleash a storm of fury and pent up anger all over their loved ones.
And here enters another 'professional' who, when told about this set of behaviours, instantly thinks that there must therefore be a problem at home! How ludicrous! How uninformed! How insulting!
No, Mr or Mrs Professional, this does not mean there must be a problem at home. On the contrary in fact, it means that home is where this child feels safe enough to let it all 'hang out'. This is where they can release and be themselves without fear of punishment, ridicule or reprisal for their behaviour.
Home is where all of the unmet needs of the day manifest into behaviours which communicate just how badly that child has been failed by their care-givers during their day.
Parents have to deal with the fall out of a failing system only to be told that their parenting is at fault! That their child's behaviour is a result of their lack of boundaries and training on their part.
Sigh.
It is such a soul destroying situation for these parents. Not only is their child being failed, but now they are being blamed for that failure.
How can we begin to address this issue?
Well, I think, knowledge, knowledge and more knowledge is the only realistic and long-term answer.
Gathering this knowledge from caring, empathetic professionals (Jude Seaward and Felicity Evans to name two I know of), other parents, adults with special needs (who have long since left behind their school days) and of course, listening to our children, is the best way forward.
Places like The Avenue, and volunteers like Joanne, Elaine and Sarah, who are dedicated to expanding the knowledge of parents and carers, is the future.
It is groups like The Avenue that will make the difference to our children by empowering parents and informing professionals.
It is only when parents are given the confidence and appropriate vocabulary that they will be able to effectively advocate for the rights of their special children.
So, please, please, please, spread the word.
Share your experiences.
Share your knowledge.
Share your thoughts and feelings.
Share with anyone who will listen.
Do not be embarrassed (or shy) about disagreeing with a 'professional'.
Do not be intimidated by their qualifications.
Do not let them claim that they know better than you if what they are saying goes against your instincts and ignores your knowledge of your child.
Trust yourself. Get informed. Ask questions.
Be the best advocate you can be.
N x
Everyday I am corresponding with mothers (and some fathers) who are at the end of their tether (and sanity in some cases) when it comes to trying to communicate the needs of their children with those who are meant to be helping them.
There is a stunning lack of empathy and understanding amongst professionals when it comes to supporting a child's sensory, emotional and physical needs. This is particularly evident in the educational establishment, not to mention the paediatric setting and don't even get me started on Social Services.
Let me preface my criticism with this thought - of course there are some amazing professionals out there in the country (and world) but unfortunately they are few and far between. Couple this lack of professional understanding with a parents lack of medical vocabulary, and it can get very adversarial very quickly with the parent often being blamed for their child's needs.
The parents I am corresponding with are telling me that those charged with the safety, education and well-being of their children are simply not listening to them.
They are almost unanimous in their cries of, "They think I'm a bad parent." "They say I lack the skills to the manage my child effectively." "They think he/she is just naughty/attention seeking/dramatic/uncooperative." And the list goes on and is exacerbated by a further lack of adequate diagnosis from the paediatric teams. This is particularly true in the case of Pathological Demand Avoidance which is not in the manual and is therefore 'not even a real condition' but simply a parents excuse for poor behaviour. As a side note, not all parts of the country refuse to diagnose PDA making it even harder for parents to figure out where to turn.
Parents often face the above charges without the professional having spent much more than a few hours with their child and even when parents present video evidence, behaviour diaries and testimony from others who care for their child they are still ignored. How can this be?
The professional literature would have us believe that WE are the experts on our children (and of course, we are) and yet in reality, we are ridiculed, belittled and patronised and, more often than not, sent on parenting courses which, in my opinion, is the worst insult of all, especially if you are the parent of more than one child and the others are 'conforming' and 'behaving well' with no obvious difficulties. Surely this alone indicates that it is not the fault of the parent?
My son has Sensory Processing Disorder (a condition commonly diagnosed alongside an ASD) and he often needs deep pressure, movement breaks, quiet time, something to chew or fiddle with and more sensory feedback from his environment (a sensory diet). He can react violently to loud noises, bright lights, too many people and strong smells. As his mum, I know what might cause extreme reactions and I am able to monitor and control his environment when necessary to avoid the sensory overload. I know when he needs his ear-defenders or his chewing gum or even a great big squeeze!
I don't think these adaptations are unreasonable if it allows him to regulate himself and participate in 'normal' activities! They are a necessary part of his 'therapy' and have a huge impact on his behaviour. I think they should be respected, just as you would allow a diabetic to take their insulin, or a wheelchair user to be able to use a lift. Just because they are not visible, it does not mean they are not real.
Now, why can't the professionals accept and meet these needs too? If my son were at school, I would send him armed with a list of strategies and techniques to give to the professionals in order to help them understand and support him. I would give them a very long tip sheet about PDA and how best to get him on board with any given task so that he stands the best chance of being able to comply and enjoy what he is doing. What parent wouldn't?
However, the chances are, my carefully though-out tip sheet and long list of successful strategies would be ignored/forgotten in amongst the mass of other tasks that teachers/TA's have to do in a day.
Fair enough, I guess. They do have a lot to do (and lots of other needs to take into account) but, if they do not utilise our suggestions, surely the resulting punishment of our children is discrimination? They are inevitably punishing our children for their disability! How can this ever be acceptable?
I read about illegal exclusions and draconian punishments DAILY which are a direct result of teachers and TA's being unable to meet the needs of our very special children. I admit, these needs are high, but the professionals have a duty of care, and they accept that duty of care and when they fail to meet the standard of care our children deserve, what are the consequences?
The consequences are disastrous. Not only for the teachers, TA's and other children affected during the school day, but also for the child in question and just as importantly, for the child's family when the school day ends.
When that child goes home they will need to release all that tension, frustration, upset and sensory overload somehow. They will more often than not, explode through the door at home and unleash a storm of fury and pent up anger all over their loved ones.
And here enters another 'professional' who, when told about this set of behaviours, instantly thinks that there must therefore be a problem at home! How ludicrous! How uninformed! How insulting!
No, Mr or Mrs Professional, this does not mean there must be a problem at home. On the contrary in fact, it means that home is where this child feels safe enough to let it all 'hang out'. This is where they can release and be themselves without fear of punishment, ridicule or reprisal for their behaviour.
Home is where all of the unmet needs of the day manifest into behaviours which communicate just how badly that child has been failed by their care-givers during their day.
Parents have to deal with the fall out of a failing system only to be told that their parenting is at fault! That their child's behaviour is a result of their lack of boundaries and training on their part.
Sigh.
It is such a soul destroying situation for these parents. Not only is their child being failed, but now they are being blamed for that failure.
How can we begin to address this issue?
Well, I think, knowledge, knowledge and more knowledge is the only realistic and long-term answer.
Gathering this knowledge from caring, empathetic professionals (Jude Seaward and Felicity Evans to name two I know of), other parents, adults with special needs (who have long since left behind their school days) and of course, listening to our children, is the best way forward.
Places like The Avenue, and volunteers like Joanne, Elaine and Sarah, who are dedicated to expanding the knowledge of parents and carers, is the future.
It is groups like The Avenue that will make the difference to our children by empowering parents and informing professionals.
It is only when parents are given the confidence and appropriate vocabulary that they will be able to effectively advocate for the rights of their special children.
So, please, please, please, spread the word.
Share your experiences.
Share your knowledge.
Share your thoughts and feelings.
Share with anyone who will listen.
Do not be embarrassed (or shy) about disagreeing with a 'professional'.
Do not be intimidated by their qualifications.
Do not let them claim that they know better than you if what they are saying goes against your instincts and ignores your knowledge of your child.
Trust yourself. Get informed. Ask questions.
Be the best advocate you can be.
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