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 anxiety. Show all posts
Showing posts with label anxiety. Show all posts
Monday, 18 December 2017
Thursday, 8 December 2016
It's here again!
In what seems like the blink of an eye, it's Christmas time again. This is my third Christmas as a blogger! Where did that time go?
So, this year, dare I say it, it almost feels calm!
None of my children have asked for very much this year and I think this has had a large part to play in alleviating the usual stresses! We are all very excited and have even agreed that we will put up our decorations a tad earlier than usual. Cannot wait til the weekend!
Dominik, of course, has had his main present already and given that he hasn't asked for anything else, the rest will be sure to be a pleasant surprise.
I should probably fill you in on life after surgery! Dominik had his casts removed last week after what felt the longest six weeks of our lives! He hated using the commode almost as much as I hated him using it to be honest! So glad that is behind us now.
The first day he was incredibly nervous...refusing to put his feet down and insisting on using the wheelchair after a week of not using it at all! We had booked to go and see Fantastic Beasts that night and I optimistically, didn't expect to be using the chair but we had to in the end!
The second day he hobbled around with his crutches mostly using them as weapons, which was a bit trying.
But, on the third day, he put them down and began to walk unaided! He is waddling (a little like a penguin) and refusing to bend his knees but the surgeon assured us that within three months he would be much more confident and competent. I guess the irony is that he is point blank refusing to stand up on his toes! He simply will not do it. Hope that's a good sign.
We saw the neurodevelopmental therapist after the casts were off too to check on the progress of his retained reflexes and that was also great news. His pupils are showing almost no stress response now and he was able to do the exercises far more easily than ever before. His back has now loosened up which makes every single movement easier and far less stressful for his entire body. We have been advised to seek a physiotherapist (not provided by the hospital, urgh) and a cranial osteopath so the pathway to wellness continues.
Back to Christmas!
Three years ago when I first began writing this blog, I wrote a long and detailed post about all the things I put into place around this time of year to make life less stressful and anxiety inducing for Dominik but here we are, three years on, and those measures, whilst still being on stand by, are no longer essential.
I am going to copy and paste some of my tips here from the original article in case they are of use to any new readers.
This is perhaps the most challenging time of year for us families with children (and adults) on the Autistic Spectrum so I thought I would share with you a few of my ideas designed to make life a little less stressful.
It is my hope that they will help things to run more smoothly (and joyously), in your home too during this Christmas Season.
Preparation, Preparation, Preparation.
This cannot be said enough! Prepare to the nth degree!
Let your child create their own special visual timetable (in the form of an advent calendar?) so that they can anticipate all the events at school and at home. Let them talk to you about everything that they remember about the changes and how that makes them feel and what they feel they can and cannot cope with.
Enable them to choose, to as large an extent as possible, what they want to participate in and what they don't in the school calendar and respect their wishes. Be the best advocate for your child that you can be and ensure that they get the Christmas they want too. Struggling is not a nice way to live at any time but at Christmas, when everyone else is smiling and happy, it is even worse.
Bribery & Coercion
I think it is all too common that parents begin using Santa (and presents) as a 'carrot/stick' once Christmas time comes around. Children all over the western world are worrying themselves half to death about their behaviour and whether or not they have been 'good' enough to deserve presents.
It is my firm belief that children will do well if given the environment in which they can do well.
Our special children are already doing their best all the time to manage without breaking down, so at Christmas, when there is so much more at stake, perhaps we should avoid pairing their behaviour with the promise of presents?
A lady told my daughter only the other day that if she 'screamed like that' Santa would hear her and she wouldn't get any presents. Not only was this extremely distressing for my daughter but it was horrible for me too! I do not use this kind of carrot and stick system in my house as a rule (I'm not perfect) and I have to say that to hear it come from a complete stranger was horrifying.
My daughter had been having a difficult (and busy) day and she was getting to the end of her ability to cope (several different shops, in and out of the car, hungry and over-stimulated) and this lady simply made things 100% worse. Sigh.
So, yes, try your hardest to not equate their behaviour with good/bad....they are trying their best.
Shopping/Trips
Please, please, please, unless you have absolutely no choice (or alternatively, they want to come along), let them stay at home! The world is a crappy place for those of us who shun noise, smells, lights, people, being touched and garishness right now! Unless your little one wants to plan a trip (and gets complete autonomy over what happens on that trip, including when to call it quits), don't make them come along. A trip such as this can take days to wind down from even if it goes well. If it goes badly the guilt and shame and self-reproach from us perfectionists is almost too much to bare.
Visitors
Keep the number of visiting friends and relations to an minimum, or, at the very least, let your child hide out in their room (or in the room that is most comfortable for them) and do not force them to socialise if they don't want to.
As an Aspie adult I can tell you, being made to kiss, hug and chat to people who are basically a load of strangers, is traumatic and exhausting and certainly not 'fun'!
Please be an advocate for your child and warn any visitors, that if they are bringing presents, to expect them to be unwrapped on sight if they are seen by said children! If they do not wish for this to happen then should wait for the opportunity to 'sneak' them in unseen when they can be safely hidden and not add to the anticipation that our children are already feeling with regard to unopened presents, and the pressure to like them.
Also, tell these same visitors what treats/sweets/foods are acceptable in advance so you don't have repeated meltdowns over food.
If you can, decline any invitations that are non-essential. Visiting lots of different homes is stress-inducing due to the amount of unpredictability and frequent transitions.
If you do over-do it our little ones will soon unravel and will not have a chance to regroup and recover, and will therefore end up not enjoying the best bits that Christmas has to offer.
Decorating
Allow your child/children to take whatever role they wish in decorating the house and tree (or not). If they are anxious about decorations perhaps put them up as late as you can in family areas and allow any other children to decorate their rooms so that they don't miss out."
I have added a few tips and tweaked this a little but it is basically the same as it was in 2014.
I'd like to take this opportunity to wish you all a happy, fun and joyful Christmas.
Much Love, thanks for reading,
N x
So, this year, dare I say it, it almost feels calm!
None of my children have asked for very much this year and I think this has had a large part to play in alleviating the usual stresses! We are all very excited and have even agreed that we will put up our decorations a tad earlier than usual. Cannot wait til the weekend!
Dominik, of course, has had his main present already and given that he hasn't asked for anything else, the rest will be sure to be a pleasant surprise.
I should probably fill you in on life after surgery! Dominik had his casts removed last week after what felt the longest six weeks of our lives! He hated using the commode almost as much as I hated him using it to be honest! So glad that is behind us now.
The first day he was incredibly nervous...refusing to put his feet down and insisting on using the wheelchair after a week of not using it at all! We had booked to go and see Fantastic Beasts that night and I optimistically, didn't expect to be using the chair but we had to in the end!
The second day he hobbled around with his crutches mostly using them as weapons, which was a bit trying.
But, on the third day, he put them down and began to walk unaided! He is waddling (a little like a penguin) and refusing to bend his knees but the surgeon assured us that within three months he would be much more confident and competent. I guess the irony is that he is point blank refusing to stand up on his toes! He simply will not do it. Hope that's a good sign.
We saw the neurodevelopmental therapist after the casts were off too to check on the progress of his retained reflexes and that was also great news. His pupils are showing almost no stress response now and he was able to do the exercises far more easily than ever before. His back has now loosened up which makes every single movement easier and far less stressful for his entire body. We have been advised to seek a physiotherapist (not provided by the hospital, urgh) and a cranial osteopath so the pathway to wellness continues.
Back to Christmas!
Three years ago when I first began writing this blog, I wrote a long and detailed post about all the things I put into place around this time of year to make life less stressful and anxiety inducing for Dominik but here we are, three years on, and those measures, whilst still being on stand by, are no longer essential.
I am going to copy and paste some of my tips here from the original article in case they are of use to any new readers.
"For those of you with little ones who are at school, I imagine this time of year must be particularly challenging, not least because of the following;
- Mufti-days
- Carol services
- Timetable changes
- Nativity plays
- Decorations
- Staff absence
to name but a few of the school based changes.
But what about if we include;
- School holidays
- Visiting relatives
- Christmas trees and decorations
- Furniture being relocated
- Presents (and the accompanying anxiety)
- All predictability vanished
- Extra people everywhere
And perhaps even;
- Parties
- Father Christmas himself
- Family events
- Photo ops
- Different foods
- Different clothes
- An abundance of chocolate/sweets and treats everywhere
- Anxiety at its maximum surrounding the idea of being 'good/well behaved/deserving'
It is my hope that they will help things to run more smoothly (and joyously), in your home too during this Christmas Season.
Preparation, Preparation, Preparation.
This cannot be said enough! Prepare to the nth degree!
Let your child create their own special visual timetable (in the form of an advent calendar?) so that they can anticipate all the events at school and at home. Let them talk to you about everything that they remember about the changes and how that makes them feel and what they feel they can and cannot cope with.
Enable them to choose, to as large an extent as possible, what they want to participate in and what they don't in the school calendar and respect their wishes. Be the best advocate for your child that you can be and ensure that they get the Christmas they want too. Struggling is not a nice way to live at any time but at Christmas, when everyone else is smiling and happy, it is even worse.
Bribery & Coercion
I think it is all too common that parents begin using Santa (and presents) as a 'carrot/stick' once Christmas time comes around. Children all over the western world are worrying themselves half to death about their behaviour and whether or not they have been 'good' enough to deserve presents.
It is my firm belief that children will do well if given the environment in which they can do well.
Our special children are already doing their best all the time to manage without breaking down, so at Christmas, when there is so much more at stake, perhaps we should avoid pairing their behaviour with the promise of presents?
A lady told my daughter only the other day that if she 'screamed like that' Santa would hear her and she wouldn't get any presents. Not only was this extremely distressing for my daughter but it was horrible for me too! I do not use this kind of carrot and stick system in my house as a rule (I'm not perfect) and I have to say that to hear it come from a complete stranger was horrifying.
My daughter had been having a difficult (and busy) day and she was getting to the end of her ability to cope (several different shops, in and out of the car, hungry and over-stimulated) and this lady simply made things 100% worse. Sigh.
So, yes, try your hardest to not equate their behaviour with good/bad....they are trying their best.
Shopping/Trips
Please, please, please, unless you have absolutely no choice (or alternatively, they want to come along), let them stay at home! The world is a crappy place for those of us who shun noise, smells, lights, people, being touched and garishness right now! Unless your little one wants to plan a trip (and gets complete autonomy over what happens on that trip, including when to call it quits), don't make them come along. A trip such as this can take days to wind down from even if it goes well. If it goes badly the guilt and shame and self-reproach from us perfectionists is almost too much to bare.
Visitors
Keep the number of visiting friends and relations to an minimum, or, at the very least, let your child hide out in their room (or in the room that is most comfortable for them) and do not force them to socialise if they don't want to.
As an Aspie adult I can tell you, being made to kiss, hug and chat to people who are basically a load of strangers, is traumatic and exhausting and certainly not 'fun'!
Please be an advocate for your child and warn any visitors, that if they are bringing presents, to expect them to be unwrapped on sight if they are seen by said children! If they do not wish for this to happen then should wait for the opportunity to 'sneak' them in unseen when they can be safely hidden and not add to the anticipation that our children are already feeling with regard to unopened presents, and the pressure to like them.
Also, tell these same visitors what treats/sweets/foods are acceptable in advance so you don't have repeated meltdowns over food.
If you can, decline any invitations that are non-essential. Visiting lots of different homes is stress-inducing due to the amount of unpredictability and frequent transitions.
If you do over-do it our little ones will soon unravel and will not have a chance to regroup and recover, and will therefore end up not enjoying the best bits that Christmas has to offer.
Decorating
Allow your child/children to take whatever role they wish in decorating the house and tree (or not). If they are anxious about decorations perhaps put them up as late as you can in family areas and allow any other children to decorate their rooms so that they don't miss out."
I have added a few tips and tweaked this a little but it is basically the same as it was in 2014.
I'd like to take this opportunity to wish you all a happy, fun and joyful Christmas.
Much Love, thanks for reading,
N x
Saturday, 2 April 2016
Responsibility.
I've been composing and erasing this blog post for about two weeks now and it just hasn't really come together at all so, I'm just going to type and see what happens.
The second and third month of this year were shockingly stressful. I don't like to write about my life when it is going off course because I try to be positive and uplifting. I cannot write about anything other than what is actually going on in our real life either so consequently, when I don't write, it's because things are shit.
Here's a brief synopsis of what happened -
- My car died a death.
- My daughter was refused DLA because our incompetent Dr lost the form he was meant to complete and return on our behalf.
- My son has seen a private podiatrist who recommended an urgent referral to an orthopaedic surgeon with regard to his tip-toe walking. This has still not happened as I type.
- The stress of the potential surgery has sent my son into anxiety overdrive.
- My daughter has been without her usual activities due to a complete lack of funds so has been equally as anxious.
- Baby has started walking and is getting 8 (yes, at once) new teeth so is not sleeping...at all. Ever. (Well, obviously not, but you know what I mean.)
I think that is about it but it was more than my Aspie self could manage.
It got me thinking about responsibility.
Sometimes it all just overwhelms me.
The very idea (reality) that I have four little people who rely solely on me for everything in their lives is just staggering and terrifying. When life takes unplanned turns I feel so out of control and panicked that I simply freeze. I just cannot function with any real fluidity. I am normally organised, present, confident, open, engaged and happy. But when I feel out of control, I am distracted, confused, sad, angry, impatient and detached.
The kids and I have a very open relationship so they are aware of all the things that are going wrong but that probably doesn't help when I am once again answering the question, "What's for dinner?", with "I don't know. I can't think about it right now."
As it stands, the DLA for my daughter has been reinstated. Phew.
The car has been scrapped and replaced. Phew.
The baby is beginning to calm down and isn't quite so keen to be on her feet 24/7 exploring her new world of freedom. Phew.
So, that just leaves the potential surgery for Dominik. Well, I took a step back, thanks once again to my guardian angel friend, Felicity, and I don't think surgery is in Dominik's best interests after all.
Felicity's timing is nothing short of miraculous. We don't speak that often and we see each other even less, but when we do make contact, the Earth moves and my life, and the lives of my children, change for the better.
I spoke to Felicity this weekend and began to tell her about the nightmare that has been trying to get seen by said surgeon and she immediately said, "Stop. No." I was relieved when she did because I knew that meant she had a plan! Thank the universe!!! This responsibility was going to be shared. Hallelujah!
I was so nervous about the surgery route anyway (because it goes against everything I believe in in terms of health and well being) and if anyone would know of a better alternative solution (permanent solution, not temporary, surface level, band aid), it was Felicity.
Now, back in 2012, I know she talked to me about what we came to discuss on Saturday, but it had slipped from my mind. It happens. I'm not perfect. It is back in there now though and I'm ready to tackle it! As is Dominik for that matter (which is something else Felicity and I discussed at length).
The alternative to surgery is something that goes by several names, but the most common I have found is, retained infant/neonatal reflex therapy.
It is a lot of information to take in so I am now going to link you to (and quote from) what I found to be the most helpful webpages.
First, a visual, for any Aspie mums like me who need a good visual synopsis before they begin!
Here is the Wikipedia page.
"3 or more of the following are the kinds of behaviour which suggest a retained Moro:
Here is just one more, perhaps the most relevant for us.
"3 or more of the following would lead you to suspect retention of these reflexes:
Poor pincer grip between thumb and forefinger
Immature pencil grip
Over sensitivity on the palms and bottom of feet, very ticklish
Poor knife and fork grasp and control
Difficulty with cup handles
Poor running skills
Complaints that shoes hurt especially over toes
Tripping, falling
Poor saliva control, dribbling, frothing at mouth corners, spitting whilst speaking
Over sensitivity around and in the mouth
Messy eating
Dislike of certain textures of foods
Tendency to suck rather than chew
Noisy eating
Inability to close mouth on eating
Narrow high arch to Palate
Poor tooth alignment and the need for orthodontic work
Poor control of mouth for speech
Poor co-ordination of breathing and speech
Retained thumb, jumper, pencil, hair sucking
Poor bladder control
Possible reflux from the stomach"
The second and third month of this year were shockingly stressful. I don't like to write about my life when it is going off course because I try to be positive and uplifting. I cannot write about anything other than what is actually going on in our real life either so consequently, when I don't write, it's because things are shit.
Here's a brief synopsis of what happened -
- My car died a death.
- My daughter was refused DLA because our incompetent Dr lost the form he was meant to complete and return on our behalf.
- My son has seen a private podiatrist who recommended an urgent referral to an orthopaedic surgeon with regard to his tip-toe walking. This has still not happened as I type.
- The stress of the potential surgery has sent my son into anxiety overdrive.
- My daughter has been without her usual activities due to a complete lack of funds so has been equally as anxious.
- Baby has started walking and is getting 8 (yes, at once) new teeth so is not sleeping...at all. Ever. (Well, obviously not, but you know what I mean.)
I think that is about it but it was more than my Aspie self could manage.
It got me thinking about responsibility.
Sometimes it all just overwhelms me.
The very idea (reality) that I have four little people who rely solely on me for everything in their lives is just staggering and terrifying. When life takes unplanned turns I feel so out of control and panicked that I simply freeze. I just cannot function with any real fluidity. I am normally organised, present, confident, open, engaged and happy. But when I feel out of control, I am distracted, confused, sad, angry, impatient and detached.
The kids and I have a very open relationship so they are aware of all the things that are going wrong but that probably doesn't help when I am once again answering the question, "What's for dinner?", with "I don't know. I can't think about it right now."
As it stands, the DLA for my daughter has been reinstated. Phew.
The car has been scrapped and replaced. Phew.
The baby is beginning to calm down and isn't quite so keen to be on her feet 24/7 exploring her new world of freedom. Phew.
So, that just leaves the potential surgery for Dominik. Well, I took a step back, thanks once again to my guardian angel friend, Felicity, and I don't think surgery is in Dominik's best interests after all.
Felicity's timing is nothing short of miraculous. We don't speak that often and we see each other even less, but when we do make contact, the Earth moves and my life, and the lives of my children, change for the better.
I spoke to Felicity this weekend and began to tell her about the nightmare that has been trying to get seen by said surgeon and she immediately said, "Stop. No." I was relieved when she did because I knew that meant she had a plan! Thank the universe!!! This responsibility was going to be shared. Hallelujah!
I was so nervous about the surgery route anyway (because it goes against everything I believe in in terms of health and well being) and if anyone would know of a better alternative solution (permanent solution, not temporary, surface level, band aid), it was Felicity.
Now, back in 2012, I know she talked to me about what we came to discuss on Saturday, but it had slipped from my mind. It happens. I'm not perfect. It is back in there now though and I'm ready to tackle it! As is Dominik for that matter (which is something else Felicity and I discussed at length).
The alternative to surgery is something that goes by several names, but the most common I have found is, retained infant/neonatal reflex therapy.
It is a lot of information to take in so I am now going to link you to (and quote from) what I found to be the most helpful webpages.
First, a visual, for any Aspie mums like me who need a good visual synopsis before they begin!
Here is the Wikipedia page.
"Primitive reflexes are reflex actions originating in the central nervous system that are exhibited by normal infants, but not neurologically intact adults, in response to particular stimuli. These reflexes are absent due to the development of the frontal lobes as a child transitions normally into child development. These primitive reflexes are also called infantile, infant or newborn reflexes."
So, that is what they are.
Here is an amazing summary from a lady called Sue Hyland. I honestly did not find a better summary than this after many hours of research.
I am going to simply copy and paste the sections that are most relevant to us. Please do visit her website linked above for the full text. It is brilliant.
"Moro Reflex
Sudden head movements on a vertical plane, that is forward and backward, will initiate the Moro reaction. This reaction is a rapid extension of the limbs, with a big inhalation of breath, followed by contraction of the limbs and a cry. This reaction is initiated by the Moro reflex and is perfectly normal from about 9 weeks after conception to about 12 weeks after birth. It is a reaction to potential danger and occurs as a result of both nerve/muscle stimulation and chemical release."
...
"Should this reflex reaction be retained after it’s normal time of inhibition then not only willunwanted muscular reactions occur but so will the release of the chemicals, every time the head is jerked backwards or there is a sudden visual stimuli or unexpected loud noise. Obviously these will sometimes auger danger, when a full blown flight or fight response is required, but frequently they do not. "
...
"3 or more of the following are the kinds of behaviour which suggest a retained Moro:
Mood swings
Unexpected sudden changes of behaviour
Aggressive outbursts
Withdrawn timidity (either of the last two can exist as major characteristics or they can alternate)
Tendency to observe others rather than join in play
Craving for sweet things
Snacking, inability to eat a whole meal
Dislike of rough and tumble
Dislike of fairground rides
Dislike of bright lights, headaches
Dislike of wind in face, water in face
Panic attacks
Distractibility
Copying difficulties
Perceptual difficulties both visual and auditory
Nervousness
Need to be in control
Dislike of change
Dislike of loud noise
Over sensitivity to particular frequencies of sounds
Over sensitivity to textures, labels etc
Sensitivity to a range of high frequencies normally outside human hearing (so that cars can be heard miles away, lift mechanics emitting a high pitch whistle)"
So, that is just the first reflex in the list and as I continued to read them, light bulbs were switching on all over my head.
Here is just one more, perhaps the most relevant for us.
"The Grasping Reflexes
The Grasping Reflexes develop and inhibit at about the same time as the Moro, which in itself is really a grasping reflex, and can be divided into the Palmar, Plantar, Rooting and Infantile Suck Reflexes. They are therefore frequently found if the Moro is retained, usually all being present."
...
"3 or more of the following would lead you to suspect retention of these reflexes:
Poor pincer grip between thumb and forefinger
Immature pencil grip
Over sensitivity on the palms and bottom of feet, very ticklish
Poor knife and fork grasp and control
Difficulty with cup handles
Poor running skills
Complaints that shoes hurt especially over toes
Tripping, falling
Poor saliva control, dribbling, frothing at mouth corners, spitting whilst speaking
Over sensitivity around and in the mouth
Messy eating
Dislike of certain textures of foods
Tendency to suck rather than chew
Noisy eating
Inability to close mouth on eating
Narrow high arch to Palate
Poor tooth alignment and the need for orthodontic work
Poor control of mouth for speech
Poor co-ordination of breathing and speech
Retained thumb, jumper, pencil, hair sucking
Poor bladder control
Possible reflux from the stomach"
As you can see, there is much food for thought here. Domink has at the very least retained these two, but I suspect he has retained more.
Felicity recommended someone who is an expert in this field, and whilst we may not be able to go to him for the therapy itself, we will be going to see him for the initial assessment. It takes on average, a year to eighteen months of therapy to release these reflexes, but by all accounts, once they are released, the progress and improvement in the individual is life-changing.
I just cannot imagine how much happier Dominik would be if he could fully participate in his life. He is often so timid, afraid, cautious and in pain to even begin to think about taking part in the activities he would like to, but this might just change all that.
And with it, his heels might actually feel the Earth. How great would that be?
I'm going to sign off now and hope that what I have written is coherent and helpful.
And, to all of you out there feeling the weight of your responsibility; don't worry, you're doing a great job, you're not alone and remember, it is only temporary and it will get better.
Best,
N x
Sunday, 18 October 2015
Building the New.
This encapsulates my life philosophy. I genuinely believe that my efforts are best placed in creating new 'stuff'. Be it thoughts, people, ideas, relationships, habits etc etc. I have never described myself as creative, but it turns out that I am! I only want to create new 'systems'. It thrills me. I think that is why the complex and completely meaningful relationships in my house fascinate me so much.
Anyway, during a conversation about school choices, I had these thoughts and things to say about what is going with us 5 at the moment.
Here is what I wrote. I wrote this to a friend, before I decided it would be a blog post so it is as honest as it gets!
Enjoy!
"Hey, So, which one did they choose? I'm dying to know! I used to work in all of them many moons ago.
They made a really big decision and it sounds like they have been empowered by the experience. It reminds me of me! When I was that age I had the choice of going to Bedford Academy (John Bunyan as it was) or Dame Alice (now merged with Bedford Modern but still a private school). I chose Dame Alice because even thought there was an exam and I would be going completely alone, it was still a safer, more predictable, more academic choice.
If I had gone to John Bunyan with my 'friends' I cannot even begin to imagine the different route my life would have taken.
It still wasn't easy and there were still mornings when my mum would have to sit in the car with me outside school and wait for me to stop crying and calm down enough to actually go in! But, go in I did, most of the time.
I switched again for my 'A' Levels to go to Sharnbrook. Now that transition was far from easy. I was back among all the kind of people who bullied me in my middle school!
{I edited out two paragraphs for privacy.}
We seem to be pretty busy. I'm not coping well with it but we are doing it! We have never had so many organised activities (4 per week) and trying to fit in 'quality' time is more difficult because I have so much more to do. Trying to get them all to comply and enjoy is hard going!
Dominik has a wobble every week at parkour. He has a meltdown within the first hour every week guaranteed. It is heartbreaking but he hasn't given up yet and is just beginning to see an improvement so I honeslty hope he decides to keep it up after half term. Feels like a test!
Hannon is coding his own video games which improve by the day! It is incredible to watch and he surpassed what I had learned in less than 24 hours!! He has taken to it like a duck to water. He has about 5 different pieces of game making software on his pc but this is the first one that has really worked for his learning style. So, after about 4 months of trial and error (and money!) he has finally found his niche...and it was free! lol [ETA - He is even drawing all of his own pictures which is a first as he doesn't even voluntarily write with a pencil. Whilst the rest are drawing, he has always resolutely refused. Until now! He is experimenting with drawing on the computer and even 3D drawing like he never could in real life. I think he has overcome a big fear in doing this. He even said he thinks he might start trying with a pencil in the future. I am so proud of him taking charge of what works for him. Lily has even let him borrow her graphics tablet in case he wants to try with a pen.]
Lily is reading like a pro! She is just flying through it now and she is even asking to learn Spanish! We wrote down all the ways I could think of to say 'I love you' in different languages last night. It was great fun,
Although, to coincide with Lily's rapid developmental spurt, we have also had a complete regression to the aggression and violence.
I have come to accept that it is the price we pay for big leaps. It puts a lot of stress on her system and she falls apart a little at the seams. We're all doing our best to support her..well, except Hannon who mostly wants to torment her a little more. Grrr.
And Harriet! She is awesome. Teeth 9 and 10 on their way. Crawling brilliantly (although more of a drag than a crawl...think legless zombie!) and she has just started cruising the furniture! I had forgotten how scary this bit is but she is doing marvellously and takes the odd tumble with grace and humour! She can almost stand unaided and she is learning fast how to fall onto her bum! She is also loving any food you give her to try. Thanks goodness! I do not have time to cook yet another meal! She loves being wrapped and even tolerates my failures and re-wrappings with fun (that is, if you call having your ears bitten at all 'fun').
Me, well, I'm exhausted and was on the edge for a few days. My mum stepped in and gave me an afternoon last week which was my first one since Harriet was born. That is 8 months! So, well, it was great and I am ok now.
Well, now I've bored you with an essay (sorry) I'm going to blog it in an adapted form if that is ok with you? I won't mention you by name but I will say how the blog came about.
PS - Thanks for asking how we are. You'd be amazed how few people actually do and I sometimes forget that great things are going on here, even when I am too exhausted to fully appreciate it all. Being able to write it down really helps.
Big hugs xxxxx" So, there you have it. That's a short summary of how we are all building and creating in my house! Sorry I haven't blogged sooner. It's been a bit busy! I'm glad a friend helped me to make the time to blog today.
N x PS - I did my hair!
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!
Saturday, 25 April 2015
PDA kicked my butt this week.
Pathological Demand Avoidance (PDA) has kicked our butts this week.
Dominik has been more challenging this week than he has been for a long while.
Every single request, from asking him to being me an empty juice cup, to encouraging him to come out to the woods for an afternoon with us (more on this below), has met with outright refusal.
He is entrenched in his gaming world and is not interested in leaving it for any reason. Unless of course you count going into town to buy another game! That he did with no problem whatsoever and it went really well, in fact, it was a lot of fun.
That is what grates more than anything else. The fact that when he wants to participate in life, things are great. If Dominik wants to be a part of our world he is a delight. He is the spoke at the centre of the wheel. He is the determining factor in every situation. You have to admire someone who can exert that amount of control, no matter what the reason.
But, let's not forget that even if he does really want to do something, the transitioning is always tough. Getting him dressed and into the car is invariably lengthy and anxiety provoking (for all of us, not just Dominik). More often than not, the little ones stay out his way lest he lose control of himself and lash out. He is impatient and nervous once out of the house and prior to reaching his destination. He is in full blown 'I must control everything mode' until we get where we are going. He will ban everyone from talking in the car. He will decide whether or not the radio is on and if it is, how loud it will be. He will choose if the windows or the sunroof are open and if so, how far open. He will choose if you can drink your drink, eat your snack, play on your tablet etc etc.
It is exhausting and this week, it really has been.
Nothing has really worked in terms of distraction/persuasion. Sigh. I have lots of tools in my kit for dealing with/helping/encouraging/supporting Dominik, but this week, none of them have been enough.
We went to the woods yesterday to meet with a delightful family. We have just begun forging a new friendship and my little ones really seem to like them all a lot. Excellent.
Well, Dominik tried his best to control the situation to the nth degree and this resulted in him hitting their son (leading to him having his own meltdown and disappearing into the woods for an hour causing all sorts of new problems).
Dominik had only come because he had bargained with me to sleep downstairs the previous night. He had asked to stay downstairs and said that he would come to the woods with us if he was allowed to. I agreed.
He dressed without issue and left the house with nothing more than the ordinary drama described above.
We arrived at the woods on time (yay) and Dominik immediately asked me if he could go home in a taxi. I said no and he asked if he could stay in the car. I said no. He began throwing pine cones and sticks around so I subtly manoeuvred the little ones out of the way and we investigated the nearby woods whilst we waited for our friends to arrive.
They arrived and Dominik made his feeling known straight away, no doubt making everyone feel awkward. He walked with the adults and let the little ones go and play. He seemed ok. He said he was hungry and thirsty (we had had lunch before we left the house) and that he was bored but he kept walking. Pretty successful so far all things considered.
We eventually caught sight of the little ones ones and Dominik went running over to join in with them. Excellent I thought.
And then disaster. Upon running into a copse of bushes and fallen trees to find their base, he tripped and fell, pushing over the other little boy and grazing his own arm and leg in the process. Disaster. Dominik was screaming, the other little boy was screaming and they were both blaming eachother for the mishap. The other little boy (being on the spectrum also) thought that Dominik had pushed him over on purpose and shouted at him. This upset Dominik even more as he was not only physically hurt, but his pride was damaged and now he was being accused of doing something that he did not do. This combination of events is trouble.
Dominik is now inconsolable and insists on walking back to the car to wait for us to finish our walk and for the little ones to finish playing their game.
The little ones keep playing and don't really seem to notice his absence. Even the little boy he tripped onto seems to have recovered. Phew I think, we just need to make our way back to the car and we'll get home.
We arrive back at the car and Dominik is sitting there on a bench looking perfectly calm and ready to leave.
He wasn't. He ran over to the other little boy and thumped him. No warning. No words. Just a thump. And then he said, "That's for saying I pushed you over on purpose."
He was hurt and aggrieved that he had been accused of something he didn't do and I should have known that he wouldn't ignore that. I missed the signs and someone not only got hurt, but it caused untold stress and danger to another family.
It was not a good trip. I still feel horribly guilty this morning (hence my need to 'confess' to you all here I guess).
Everything turned out all right in the end. No one was badly hurt and I have been reminded to be more vigilant and to just let Dominik sit in the car if that is what he wants to do and even if it seems wrong. I must be flexible because he can't be.
Next time will be better,
Thanks for reading.
N x
Dominik has been more challenging this week than he has been for a long while.
Every single request, from asking him to being me an empty juice cup, to encouraging him to come out to the woods for an afternoon with us (more on this below), has met with outright refusal.
He is entrenched in his gaming world and is not interested in leaving it for any reason. Unless of course you count going into town to buy another game! That he did with no problem whatsoever and it went really well, in fact, it was a lot of fun.
That is what grates more than anything else. The fact that when he wants to participate in life, things are great. If Dominik wants to be a part of our world he is a delight. He is the spoke at the centre of the wheel. He is the determining factor in every situation. You have to admire someone who can exert that amount of control, no matter what the reason.
But, let's not forget that even if he does really want to do something, the transitioning is always tough. Getting him dressed and into the car is invariably lengthy and anxiety provoking (for all of us, not just Dominik). More often than not, the little ones stay out his way lest he lose control of himself and lash out. He is impatient and nervous once out of the house and prior to reaching his destination. He is in full blown 'I must control everything mode' until we get where we are going. He will ban everyone from talking in the car. He will decide whether or not the radio is on and if it is, how loud it will be. He will choose if the windows or the sunroof are open and if so, how far open. He will choose if you can drink your drink, eat your snack, play on your tablet etc etc.
It is exhausting and this week, it really has been.
Nothing has really worked in terms of distraction/persuasion. Sigh. I have lots of tools in my kit for dealing with/helping/encouraging/supporting Dominik, but this week, none of them have been enough.
We went to the woods yesterday to meet with a delightful family. We have just begun forging a new friendship and my little ones really seem to like them all a lot. Excellent.
Well, Dominik tried his best to control the situation to the nth degree and this resulted in him hitting their son (leading to him having his own meltdown and disappearing into the woods for an hour causing all sorts of new problems).
Dominik had only come because he had bargained with me to sleep downstairs the previous night. He had asked to stay downstairs and said that he would come to the woods with us if he was allowed to. I agreed.
He dressed without issue and left the house with nothing more than the ordinary drama described above.
We arrived at the woods on time (yay) and Dominik immediately asked me if he could go home in a taxi. I said no and he asked if he could stay in the car. I said no. He began throwing pine cones and sticks around so I subtly manoeuvred the little ones out of the way and we investigated the nearby woods whilst we waited for our friends to arrive.
They arrived and Dominik made his feeling known straight away, no doubt making everyone feel awkward. He walked with the adults and let the little ones go and play. He seemed ok. He said he was hungry and thirsty (we had had lunch before we left the house) and that he was bored but he kept walking. Pretty successful so far all things considered.
We eventually caught sight of the little ones ones and Dominik went running over to join in with them. Excellent I thought.
And then disaster. Upon running into a copse of bushes and fallen trees to find their base, he tripped and fell, pushing over the other little boy and grazing his own arm and leg in the process. Disaster. Dominik was screaming, the other little boy was screaming and they were both blaming eachother for the mishap. The other little boy (being on the spectrum also) thought that Dominik had pushed him over on purpose and shouted at him. This upset Dominik even more as he was not only physically hurt, but his pride was damaged and now he was being accused of doing something that he did not do. This combination of events is trouble.
Dominik is now inconsolable and insists on walking back to the car to wait for us to finish our walk and for the little ones to finish playing their game.
The little ones keep playing and don't really seem to notice his absence. Even the little boy he tripped onto seems to have recovered. Phew I think, we just need to make our way back to the car and we'll get home.
We arrive back at the car and Dominik is sitting there on a bench looking perfectly calm and ready to leave.
He wasn't. He ran over to the other little boy and thumped him. No warning. No words. Just a thump. And then he said, "That's for saying I pushed you over on purpose."
He was hurt and aggrieved that he had been accused of something he didn't do and I should have known that he wouldn't ignore that. I missed the signs and someone not only got hurt, but it caused untold stress and danger to another family.
It was not a good trip. I still feel horribly guilty this morning (hence my need to 'confess' to you all here I guess).
Everything turned out all right in the end. No one was badly hurt and I have been reminded to be more vigilant and to just let Dominik sit in the car if that is what he wants to do and even if it seems wrong. I must be flexible because he can't be.
Next time will be better,
Thanks for reading.
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.
N x
Tuesday, 9 December 2014
Controversial (or not) Christmas ideas. First published 2014.
I thought I would write a few words about Christmas and how it's going for us this year (and it is an excuse to post a picture of my tree which is, honestly, the best bit for me)!
This is perhaps the most challenging time of year for us families with children (and adults) on the Autistic Spectrum so I thought I would share with you a few of my ideas designed to make life a little less stressful.
It is my hope that they will help things to run more smoothly (and joyously), in your home too during this Christmas Season.
Preparation, Preparation, Preparation.
This cannot be said enough! Prepare to the nth degree!
Let your child create their own special visual timetable (in the form of an advent calendar maybe) so that they can anticipate all the events at school and at home. Let them talk to you about everything that they remember about the changes and how that makes them feel and what they feel they can and cannot cope with.
Enable them to choose, to as large an extent as possible, what they want to participate in and what they don't in the school calendar and respect their wishes. Be the best advocate for child that you can be and ensure that they get the Christmas they want too. Struggling is not a nice way to live at any time but at Christmas, when everyone else is smiling and happy, it must be even worse.
Bribery & Coercion
I think it is all too common that parents begin using Santa (and presents) as a 'carrot/stick' once Christmastime comes around. Children all over the Western world are worrying themselves half to death about their behaviour and whether or not they have been 'good' enough to deserve presents.
It is my firm belief that children will do well if given the environment in which they can do well.
Our special children are already doing their best all the time to manage without breaking down, so at Christmas, when there is so much more at stake, perhaps we should avoid pairing their behaviour with the promise of presents?
A lady told my daughter only the other day that if she 'screamed like that' Santa would hear her and she wouldn't get any presents. Not only was this extremely distressing for my daughter but it was horrible for me too! I do not use this kind of carrot and stick system in my house as a rule (I'm not perfect) and I have to say that to hear it come from a complete stranger was horrifying.
My daughter had been having a difficult (and busy) day and she was getting to the end of her ability to cope (several different shops, in and out of the car, hungry and over-stimulated) and this lady simply made things 100% worse. Sigh.
So, yes, try your hardest to not equate their behaviour with good/bad....they are trying their best.
Shopping/Trips
Please, please, please, unless you have absolutely no choice (or alternatively, they want to come along), let them stay at home! The world is a crappy place for those of us who shun noise, smells, lights, people, being touched and garishness right now! Unless your little one wants to plan a trip (and gets complete autonomy over what happens on that trip, including when to call it quits), don't make them come along.
Visitors
Keep the number of visiting friends and relations to an minimum, or, at the very least, let your child hide out in their room (or in the room that is most comfortable for them) and do not force them to socialise if they don't want to.
As an Aspie adult I can tell you, being made to kiss, hug and chat to people who are basically a load of strangers, is traumatic and exhausting and certainly not 'fun'!
Please be an advocate for your child and warn any visitors, that if they are bringing presents, to expect them to be unwrapped on sight if they are seen by said children! If they do not wish for this to happen then should wait for the opportunity to 'sneak' them in unseen when they can be safely hidden and not add to the anticipation that our children are already feeling with regard to unopened presents.
Also, tell these same visitors what treats/sweets/foods are acceptable in advance so you don't have repeated meltdowns over food.
If you can, decline any invitations that are non-essential. Visiting lots of different homes is stress-inducing due to the amount of unpredictability.
If you do over-do it our little ones will soon unravel and will not have a chance to regroup and recover, and will therefore end up not enjoying the best bits that Christmas has to offer.
Decorating
Allow your child/children to take whatever role they wish in decorating the house and tree (or not). If they are anxious about decorations perhaps put them up as late as you can in family areas and allow any other children to decorate their rooms so that they don't miss out.
I guess you may be curious as to how things are going with my brood in the run up to Christmas this year...well, let me tell you!
So, for those of you with little ones who are at school, I imagine this time of year must be particularly challenging not least because of the following;
- Mufti-days
- Carol Services
- Timetable changes
- Nativity Plays
- Decorations
- Staff absence
to name but a few of the school based changes.
But what about if we include;
- School holidays
- Visiting relatives
- Christmas Trees and decorations
- Furniture being relocated
- Presents (and the accompanying anxiety)
- All predictability vanished
- Extra people everywhere
And perhaps even;
- Parties
- Father Christmas himself
- Family events
- Photo ops
- Different foods
- Different clothes
- An abundance of chocolate/sweets and treats everywhere
- Anxiety at its maximum surrounding the idea of being 'good/well behaved/deserving'
This is perhaps the most challenging time of year for us families with children (and adults) on the Autistic Spectrum so I thought I would share with you a few of my ideas designed to make life a little less stressful.
It is my hope that they will help things to run more smoothly (and joyously), in your home too during this Christmas Season.
Preparation, Preparation, Preparation.
This cannot be said enough! Prepare to the nth degree!
Let your child create their own special visual timetable (in the form of an advent calendar maybe) so that they can anticipate all the events at school and at home. Let them talk to you about everything that they remember about the changes and how that makes them feel and what they feel they can and cannot cope with.
Enable them to choose, to as large an extent as possible, what they want to participate in and what they don't in the school calendar and respect their wishes. Be the best advocate for child that you can be and ensure that they get the Christmas they want too. Struggling is not a nice way to live at any time but at Christmas, when everyone else is smiling and happy, it must be even worse.
Bribery & Coercion
I think it is all too common that parents begin using Santa (and presents) as a 'carrot/stick' once Christmastime comes around. Children all over the Western world are worrying themselves half to death about their behaviour and whether or not they have been 'good' enough to deserve presents.
It is my firm belief that children will do well if given the environment in which they can do well.
Our special children are already doing their best all the time to manage without breaking down, so at Christmas, when there is so much more at stake, perhaps we should avoid pairing their behaviour with the promise of presents?
A lady told my daughter only the other day that if she 'screamed like that' Santa would hear her and she wouldn't get any presents. Not only was this extremely distressing for my daughter but it was horrible for me too! I do not use this kind of carrot and stick system in my house as a rule (I'm not perfect) and I have to say that to hear it come from a complete stranger was horrifying.
My daughter had been having a difficult (and busy) day and she was getting to the end of her ability to cope (several different shops, in and out of the car, hungry and over-stimulated) and this lady simply made things 100% worse. Sigh.
So, yes, try your hardest to not equate their behaviour with good/bad....they are trying their best.
Shopping/Trips
Please, please, please, unless you have absolutely no choice (or alternatively, they want to come along), let them stay at home! The world is a crappy place for those of us who shun noise, smells, lights, people, being touched and garishness right now! Unless your little one wants to plan a trip (and gets complete autonomy over what happens on that trip, including when to call it quits), don't make them come along.
Visitors
Keep the number of visiting friends and relations to an minimum, or, at the very least, let your child hide out in their room (or in the room that is most comfortable for them) and do not force them to socialise if they don't want to.
As an Aspie adult I can tell you, being made to kiss, hug and chat to people who are basically a load of strangers, is traumatic and exhausting and certainly not 'fun'!
Please be an advocate for your child and warn any visitors, that if they are bringing presents, to expect them to be unwrapped on sight if they are seen by said children! If they do not wish for this to happen then should wait for the opportunity to 'sneak' them in unseen when they can be safely hidden and not add to the anticipation that our children are already feeling with regard to unopened presents.
Also, tell these same visitors what treats/sweets/foods are acceptable in advance so you don't have repeated meltdowns over food.
If you can, decline any invitations that are non-essential. Visiting lots of different homes is stress-inducing due to the amount of unpredictability.
If you do over-do it our little ones will soon unravel and will not have a chance to regroup and recover, and will therefore end up not enjoying the best bits that Christmas has to offer.
Decorating
Allow your child/children to take whatever role they wish in decorating the house and tree (or not). If they are anxious about decorations perhaps put them up as late as you can in family areas and allow any other children to decorate their rooms so that they don't miss out.
I guess you may be curious as to how things are going with my brood in the run up to Christmas this year...well, let me tell you!
- I let them choose when to put up the tree and allowed them to dress it with me (spiking my OCD to the max let me tell you!).
- They are able to make a Christmas List the whole year through and add to it and take things away from it right up until December 1st ,when their lists are officially 'closed'. This is the same every year and it seems to work well and helps to avoid any anxiety associated with 'choosing' and being 'rushed' into decisions. (They also know that once December 1st arrives, there are no more 'incidental' treats as all my 'spare' money goes towards making Christmas awesome).
- This year, once Dominik had decided what he wanted, I went and bought it for him straight away and gave it to him. He knows he will only have stocking gifts on Christmas Day now (and any presents that people have managed to sneak past him) and this has enabled Dominik to focus on everyday...the here and now...and not on the 'what might or might not be coming' in x number of days. It is the anticipation for him that is the hardest part of present receiving occasions, particularly Christmas, with the Advent Calendar, people constantly asking about his list, people coming to drop off presents and being offended when he wants to open them in the instant he sees them, and of course, people reminding him to be 'good'. So, as much as I get lots of 'tutting' and 'sighing' from friends and relations, I don't care. He is not spoilt. He is happy and calm. This makes for a happier and calmer time for us all but especially for him. Phew.
I have implemented all of what I have listed above and, touch wood, so far, this has been by far and away the most amazing build up to Christmas there has ever been in my house.
It is a magical time of year so here's hoping it is for all of your families too.
Merry Christmas!
N x
Thursday, 9 October 2014
What does unschooling a PDA child look like?
We (my household) have honestly, cross my heart found, that the fewer the demands (ie, respectful living, few rules, free rein to roam in the early days), the higher the level of cooperation we can expect in the future.
Dominik was at a point where we could not leave the house as a family at all. My mother would not take them anywhere nor would she babysit at night for me. He ran away at times too.
Things were almost unbearable....so I let go. I paused for breath, I stopped trying to control his behaviour and I let him be himself. I ignored the bad behaviour. I learnt about his hobbies and interests and tried my best to share in them with him.
It was an intensive, one-to-one trust building exercise.
Yes, he does choose many activities I don't like! But guess what, I have hobbies he doesn't like too!
The more he trusts me not to judge and control, the more he wants to trust me and listen to my thoughts and opinions.
He is no longer instantly offended by my disagreeing with him nor by my saying no.
He is beginning to understand that not everyone is out to get him.
He said to me a few days ago, "Mum, don't make me think about things because when I do they frighten me". He meant it.
Imagine living in a world where as soon as you thought about an action (and presumably its potential consequences) you became frozen? So terrified that you either engaged; fight, flight or freeze.
That's what is happening to our children.
We need to build their trust and their own self-esteem.
N x
Dominik was at a point where we could not leave the house as a family at all. My mother would not take them anywhere nor would she babysit at night for me. He ran away at times too.
Things were almost unbearable....so I let go. I paused for breath, I stopped trying to control his behaviour and I let him be himself. I ignored the bad behaviour. I learnt about his hobbies and interests and tried my best to share in them with him.
It was an intensive, one-to-one trust building exercise.
Yes, he does choose many activities I don't like! But guess what, I have hobbies he doesn't like too!
The more he trusts me not to judge and control, the more he wants to trust me and listen to my thoughts and opinions.
He is no longer instantly offended by my disagreeing with him nor by my saying no.
He is beginning to understand that not everyone is out to get him.
He said to me a few days ago, "Mum, don't make me think about things because when I do they frighten me". He meant it.
Imagine living in a world where as soon as you thought about an action (and presumably its potential consequences) you became frozen? So terrified that you either engaged; fight, flight or freeze.
That's what is happening to our children.
We need to build their trust and their own self-esteem.
N x
Tuesday, 7 October 2014
Thinking about Senses.
Tonight, (Monday 6th October 2014)I was lucky enough to attend an excellent
presentation about the sensory issues often faced by children on the Autistic
Spectrum. It was delivered by Jo Dorasamy (whose blog can be found here: Family Life with ASD ) from
The Avenue (whose website can be found here:The Avenue ). A massive congratulations to Jo
for doing a great job.
I think that what I enjoyed most about the evening, was the
feeling of recognition I experienced when meeting other parents who live within
special needs families. (Non-muggles as my very dear friend Emma D would say).
Us ‘non-muggle’ parents seem to share a sense of community that goes beyond
words and joins us together at a more intuitive, compassionate level.
Just the thought that there other families out there whose
houses are strewn with sensory toys, tools and activities is so comforting! I
often try to imagine what the insides of other people’s houses must look like
when they have children whose needs are not dissimilar to those of my own children.
Well, now I know! Pretty much the same if the ‘props’ supplied by Jo and Sarah
for the exhibition are anything to go by!
So, just to mention as few of the things that really stood
out for me.
The sitting aids – see-saw chairs, fidget pads, weighted blankets,
slanted lap tables and the spectacular spinning egg chair.But think about it, if
a child needs this much assistance to simply be comfortable, how on Earth can we ever be anything other than in
total awe at what they achieve? The things we take for granted as people with
neurotypical senses (well, almost in my case) is astounding to me. Imagine if
you could not regulate your spatial awareness? Imagine if simply not being able
to sit in a chair ruined your ability to concentrate? The amount we ask from
these children is massive and they all deserve a pat on the back for not going
stark raving loopy more often!
The hearing aids and the visual aids for hyper sensitivities
– ear defenders, sunglasses, hats, hoodies, lava lamps, kaleidoscopes and flashing,
hand-held lights. Just brilliant! I know from experience that when the world is
too loud and too bright and too fast-moving, the little people fall apart
extremely quickly. The sensory overload is so massive that their brains simply
cannot filter out the ‘small stuff’ as neurotypical brains can. The stress on
the child (in all ways - emotional, sensory, psychological, mental) is
overwhelming and more often than not a meltdown will follow this sensory
overload. Knowing how to lessen the ‘small stuff’ is the key. Paying attention
to how your child reacts to these issues will 100% guarantee a happier child
and subsequently, a happier family life.
The importance of having a full sensory assessment by a
trained Occupational Therapist was also a key theme to the evening. Like Jo, I
too paid for a private, comprehensive assessment for Dominik (who has pretty
much all of the sensory difficulties you could describe) and it was worth its
weight in gold. Being able to understand why
he was so very clumsy and why he did
not get dizzy not matter how long he span around for and being able to finally understand why he could not
tolerate a noisy shopping centre or swimming pool turned our lives around. I
cannot recommend an assessment highly enough. Life will improve exponentially once
the sensory issues are unravelled.
For us, having the OT assessment, (and now having a firm
understanding of Sensory Processing Disorder), meant that my daughter, who is
now 5, experienced a kinder, more understanding and far less demanding mother
with much more realistic expectations of what she would be able to tolerate
than Dominik ever did. Unlike her older brother, who was literally dragged
kicking and screaming sometimes around a busy town centre or into a supermarket,
she has never had to experience any of that. I saw the signs in her behaviour
as soon as I understood what I was
looking at. I was able to guide and explain to her what steps we could take to
make things easier before we even attempted an outing somewhere that would be
challenging. I had a hat. I had sunglasses. I had lots of juice and snacks. I
was prepared for the fact that I may need to carry her so I never planned to
buy much on any given trip! Her life was better because of my new found
knowledge.
It is easy with hindsight, of course it is, but, once you
have the knowledge you must use it and you must not beat yourself up because
you didn't know about it before. I am a firm believer in the philosophy that
everything happens at the right time and that life unfurls as it is meant to (even if does not feel that way). I
apply that philosophy here too. I can wish I had known earlier what made
Dominik so very hard to manage, but I didn't. Meh. There is nothing I can do
about it now.
Except to say, that now I can rest easy because once I knew better, I did better. And
so will you. J
I am certain that Jo, with her personal, touching and
informative presentation tonight has helped many, many families to finally
understand some of what is going with those they love and wish they could help
so much. This month, Sensory Awareness Month, at The Avenue in Biggleswade,
will change people’s lives for the better.
Kudos to you all (as Dominik would say)!
N x
Sunday, 5 October 2014
Pathological Demand Avoidance Syndrome - A little known part of the Autistic Spectrum that leaves a big impression.
Let's begin with a summary form the National Autistic Society website, which can be found by clicking the link below.
“People with pathological demand
avoidance syndrome (PDA) will avoid demands made by others, due to their high
anxiety levels when they feel that they are not in control.
PDA is increasingly recognised as part of the autism spectrum. Here, we explain the characteristics of PDA and what can be done to support someone who has the condition.
PDA, first described by Elizabeth Newson during the 1980s as a pervasive developmental disorder distinct from autism, is increasingly becoming recognised as part of the autism spectrum. It is a lifelong disability and, as with autism and Asperger syndrome, people with PDA will require different amounts of support depending on how their condition affects them.
- obsessively resisting ordinary demands
- appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)
- excessive mood swings, often switching suddenly
- comfortable (sometimes to an extreme extent) in role play and pretending
- language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'
- obsessive behaviour, often focused on people rather than things.
The main features of PDA are described in more detail below. Other children on the autism spectrum can display one or more of these features but when many occur together it is helpful to use the diagnosis of PDA because things that help people with autism or Asperger syndrome do not always help those with PDA.
People with PDA are likely to need a lot of support into their adult life. Limited evidence so far suggests that the earlier the diagnosis and the better support that they have, the more able and independent they are likely to become.”
So, there you go. A simple explanation that goes part way to describing life with PDAs.
A little history and how I came to learn that my son, Dominik, was not quite what I thought!
Dominik was born with no complications after a simple natural birth. He was highly alert. Incredibly demanding and met all of his milestones very early. He came out raring to grow up!
We moved to La Gomera when he was 3 months old after travelling around Europe by car for 7 weeks.
As the months passed and we got to know others with small children around Dominik's age we began noticing difference. He was louder, he was more persistent, he was more capable, he was fussier, he was more intense across the board.
By the time he was a year old, he was walking, he had 16 teeth and his feet were the size of a 3 year olds'!
He would not be dissuaded from anything he was engaged in. He tried to make friends but went about it the wrong way, he seemed to see no difference between children and adults, male and female and would not be bribed nor cajoled by promises of ice-cream or fizzy drinks. If he wanted to do something, he did it,
He was a born escapologist. The number of times he escaped from his pushchair, broke out of his cot, tried to log into the computer, stole food from the cupboards, trashed his room and escaped from our house I cannot count.
He was certainly different! It was obvious that he was of above average intelligence and had a fair degree of hyper-activity but aside from that, he was excellent fun and always kept me on my toes.
Needless to say, he followed none of the rules! I read as many parenting books as I could digest (in between chasing him around and meeting his needs) and yet none of them seemed to work! He was expelled from his first class at the age of 3 and a half after less than an hour. He simply did not understand that there were rules that he had to abide by! Whilst all the other children did as they were told, Dominik charged around the room, investigating every corner and asking a constant stream of questions.
Now, I suppose, had we been in England, we would have sought some kind of professional advice but being abroad, on a tiny little island, that was not a possibility, so we just ploughed on.
As a result of lots of twists of fate we returned to England in 2010 when Dominik was almost 6 years old.
A chance conversation with a friend brought Asperger's Syndrome to my attention at the same time as I decided to take him to an Educational Psychologist.
The private Educational Psychologist measured his IQ as being roughly 130+ (he refused to complete all the tests, no surprise there) and the NHS paediatrician diagnosed ADHD with traits of Asperger's. So, right from the get go, he did not fit neatly into the ASD profile.
He was far too social, far to good at making eye-contact and far too good at imaginative play to fit neatly into the Autism box.
As time passed and I began to train myself in the strategies and parenting techniques recommended by the professionals to manage Autistic behaviour, his confidence, pliability, and willingness to participate in everyday life decreased. He became stressed by the timers I bought, refused to stick his stickers on the Power Rangers reward chart I made for him, and fought every instruction tooth and nail.
I should mention at this point, that it was never my intention to send my children to school. Before I had any children I had made up my mind that they would be home educated (although, not in the way we currently do) so school had never figured in my thinking. And thank goodness! Dominik could read fluently and independently by the age of 3. He had memorised all the Thomas characters by the age of 2 and his ability to learn new skills was unparalleled. School would simply have compounded many of our problems. For example, Dominik would not be rushed...ever! I cannot imagine the battles we would have had simply trying to get him dressed (which he still hates to this day), trying to get shoes on, trying to get him to transition from one activity to another. And the list goes on as I am sure many of you know.
So, how did I come to discover PDAs? Well, I joined a Facebook group of home educating, single mums and one of them, whose name was Laura, happened to mention to me that she had met an amazing former Headteacher who had assessed her son and determined that he had this little known condition called PDAs, which was a part of the Autistic Spectrum of disorders. Aha, I thought, maybe she would be interested in meeting Dominik.
We consequently met with Felicity (Evans, www.naturekids.co.uk) and she observed Dominik over the course of an afternoon out at a farm and then again at her home, which is where she runs her small, private school.
Felicity was able to give me new language and strategies which turned our lives toward a positive direction for the first time since I had begun seeking answers,
I no longer tried to use bribery, coercion and punishment and I no longer used timers and reward charts. I began taking some of my more subtle tactics to a whole new level! Now life was about negotiation, compromise and acceptance.
I accepted that Dominik was never going to be someone different. He was himself to the nth degree at all times. He did not care about being socially acceptable, he did not care about making friends (although, he does now), he did not care that he was 'just a child' and most importantly, he was never going to accept being treated in any way that was less than equal to an adult.
I think that the last point is perhaps the most difficult to understand. Dominik does not see division. He does not see differences. He treats everybody the same and does not tolerate double standards. If I say, "I'll be there in a minute." then so can he, If I can decide that I want a snack instead of dinner, then so can he. If I can choose when I go to bed, then so can he. Etc etc.
To observers, I am sure he appears crass, loud-mouthed, oafish, hyperactive, unkempt and out of control but to me he is simply Dominik. My amazingly tenacious, determined, hard-working, accepting, loving, dedicated and enthusiastic son who will never accept any less than he thinks he deserves.
Below is a link to the PDA Resource website and the PDA Society website. I cannot recommend them highly enough if you would like to learn more.
PDA Society
A must read page on Jane Sherwin's blog called - Strategies that work for Mollie.
And here are the results of the PDA questionnaire, produced by Liz O'nions, which I, and many of my friends completed.
Dominik was born with no complications after a simple natural birth. He was highly alert. Incredibly demanding and met all of his milestones very early. He came out raring to grow up!
We moved to La Gomera when he was 3 months old after travelling around Europe by car for 7 weeks.
As the months passed and we got to know others with small children around Dominik's age we began noticing difference. He was louder, he was more persistent, he was more capable, he was fussier, he was more intense across the board.
By the time he was a year old, he was walking, he had 16 teeth and his feet were the size of a 3 year olds'!
He would not be dissuaded from anything he was engaged in. He tried to make friends but went about it the wrong way, he seemed to see no difference between children and adults, male and female and would not be bribed nor cajoled by promises of ice-cream or fizzy drinks. If he wanted to do something, he did it,
He was a born escapologist. The number of times he escaped from his pushchair, broke out of his cot, tried to log into the computer, stole food from the cupboards, trashed his room and escaped from our house I cannot count.
He was certainly different! It was obvious that he was of above average intelligence and had a fair degree of hyper-activity but aside from that, he was excellent fun and always kept me on my toes.
Needless to say, he followed none of the rules! I read as many parenting books as I could digest (in between chasing him around and meeting his needs) and yet none of them seemed to work! He was expelled from his first class at the age of 3 and a half after less than an hour. He simply did not understand that there were rules that he had to abide by! Whilst all the other children did as they were told, Dominik charged around the room, investigating every corner and asking a constant stream of questions.
Now, I suppose, had we been in England, we would have sought some kind of professional advice but being abroad, on a tiny little island, that was not a possibility, so we just ploughed on.
As a result of lots of twists of fate we returned to England in 2010 when Dominik was almost 6 years old.
A chance conversation with a friend brought Asperger's Syndrome to my attention at the same time as I decided to take him to an Educational Psychologist.
The private Educational Psychologist measured his IQ as being roughly 130+ (he refused to complete all the tests, no surprise there) and the NHS paediatrician diagnosed ADHD with traits of Asperger's. So, right from the get go, he did not fit neatly into the ASD profile.
He was far too social, far to good at making eye-contact and far too good at imaginative play to fit neatly into the Autism box.
As time passed and I began to train myself in the strategies and parenting techniques recommended by the professionals to manage Autistic behaviour, his confidence, pliability, and willingness to participate in everyday life decreased. He became stressed by the timers I bought, refused to stick his stickers on the Power Rangers reward chart I made for him, and fought every instruction tooth and nail.
I should mention at this point, that it was never my intention to send my children to school. Before I had any children I had made up my mind that they would be home educated (although, not in the way we currently do) so school had never figured in my thinking. And thank goodness! Dominik could read fluently and independently by the age of 3. He had memorised all the Thomas characters by the age of 2 and his ability to learn new skills was unparalleled. School would simply have compounded many of our problems. For example, Dominik would not be rushed...ever! I cannot imagine the battles we would have had simply trying to get him dressed (which he still hates to this day), trying to get shoes on, trying to get him to transition from one activity to another. And the list goes on as I am sure many of you know.
So, how did I come to discover PDAs? Well, I joined a Facebook group of home educating, single mums and one of them, whose name was Laura, happened to mention to me that she had met an amazing former Headteacher who had assessed her son and determined that he had this little known condition called PDAs, which was a part of the Autistic Spectrum of disorders. Aha, I thought, maybe she would be interested in meeting Dominik.
We consequently met with Felicity (Evans, www.naturekids.co.uk) and she observed Dominik over the course of an afternoon out at a farm and then again at her home, which is where she runs her small, private school.
Felicity was able to give me new language and strategies which turned our lives toward a positive direction for the first time since I had begun seeking answers,
I no longer tried to use bribery, coercion and punishment and I no longer used timers and reward charts. I began taking some of my more subtle tactics to a whole new level! Now life was about negotiation, compromise and acceptance.
I accepted that Dominik was never going to be someone different. He was himself to the nth degree at all times. He did not care about being socially acceptable, he did not care about making friends (although, he does now), he did not care that he was 'just a child' and most importantly, he was never going to accept being treated in any way that was less than equal to an adult.
I think that the last point is perhaps the most difficult to understand. Dominik does not see division. He does not see differences. He treats everybody the same and does not tolerate double standards. If I say, "I'll be there in a minute." then so can he, If I can decide that I want a snack instead of dinner, then so can he. If I can choose when I go to bed, then so can he. Etc etc.
To observers, I am sure he appears crass, loud-mouthed, oafish, hyperactive, unkempt and out of control but to me he is simply Dominik. My amazingly tenacious, determined, hard-working, accepting, loving, dedicated and enthusiastic son who will never accept any less than he thinks he deserves.
Below is a link to the PDA Resource website and the PDA Society website. I cannot recommend them highly enough if you would like to learn more.
PDA Society
A must read page on Jane Sherwin's blog called - Strategies that work for Mollie.
And here are the results of the PDA questionnaire, produced by Liz O'nions, which I, and many of my friends completed.
Paper on the new PDA questionnaire (the EDA-Q)
by Liz O'Nions and others | ||
I hope this has given you some new perspectives. I hope that perhaps it has even given you some clues if your child doesn't quite 'fit the profile' but most of all, I hope that this post has given you some hope. :-)
And please, do contact me if you would like to know more.
N x
And please, do contact me if you would like to know more.
N x
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