Yesterday I received a letter from school informing me of an upcoming parents' evening. Attached to this was PDA Boy's profile.
The wording of the first paragraph has left me with very mixed feelings and a healthy dose of self doubt.
The first bit of information that a teacher will read about my son is that he has a "Private" diagnosis of autism presenting as PDA. There is then a sentence pointing out that he didn't receive a NHS diagnosis as he was on the cut-off of meeting the criteria.
I don't think I'm being oversensitive (although self doubt is present by the bucket load) in reading that and wondering why there needed to be any reference to the fact that the diagnosis was private, let alone wondering why the word needed to be highlighted. That, coupled with pointing out that PDA Boy failed to be diagnosed through the NHS, points to the fact that it is believed that his diagnosis does not hold the credibility that a NHS diagnosis would, which, given many facts surrounding PDA Boy's diagnosis, and a whole set of double standards, is a very bizarre assumption.
A few years ago, my father was diagnosed with a dodgy knee (that wasn't the official diagnosis by the way) and very quickly had a knee replacement. This was all done privately. In the recovery time following the operation, at no point was it referred to as a "private" operation. There was no need, it was a diagnosis that identified the problem, and an operation to sort it out.
Now, to preempt anyone who's sitting there saying "But the problem with the knee could be physically seen, it's nothing like autism, which can't be seen, there's no comparison", well, you're right, ASD can't be seen, but there are lengthy questionnaires formulated to spot any autistic behaviour, alongside the ADOS assessment, designed to spot differences in social and communicative behaviour. These are carried out by NHS drs and private drs alike, the very same tests. To cast doubt on one diagnosis means to cast doubt over every diagnosis using the ICD10 or DSM5, both which are used in the UK to diagnose autistic children.
The doctors we chose to assess PDA Boy were both extremely experienced in ASD and PDA, far more so than the paediatrician and psychologists we encountered in our local CDC, they are both registered with the BMC, have or still do work within the NHS, both have the experience to spot the very subtle presentation that some children present with, yet their credibility is in doubt?
We have encountered opinions that we bought our boy's diagnosis, but this still doesn't stand up, because any private practitioner diagnosing children because the parents want them to would be investigated and struck off. The reports we received show clear evidence as to how the doctors reached the diagnosis. We had to pay for their expertise, something that was lacking in our NHS experience.
PDA Boy's NHS assessment (as I've discussed before) was a bit of a disaster. He masks, which as any parent of a masker knows, leads to difficulties. PDA Boy passed the threshold on both the DISCO and ADOS elements of his assessment, but his school observations over-rode everything that appeared in those parts of the report, something which the paediatrician and psychologist later admitted, when they accepted the diagnosis and had another look over his reports. Valuable information was left out of the school observations part of the report which would have shown evidence of masking and difficulties in school.
Had we chosen an unregistered doctor, using their own unique, unorthodox method of identifying autism (which some people do, surprisingly), then the use of "private" in a child's profile would be justified. This type of diagnosis is dubious and damaging to all private practitioners.
We felt we had no choice but to seek a private assessment for our son. We couldn't ask for a second opinion, as the case had been left open for two years, and as secondary school transition was coming up, we didn't feel happy to wait that long, so with the full support and understanding from our GP, we sought out doctors who could assess PDA Boy.
This is something I will be addressing at school, but it does leave me wondering why, yet again, autism (and other neurological disabilities) are not held to the same standards of other conditions. Why is it acceptable to doubt a diagnosis, or call it a label, or avoid diagnosis at all costs? PDA Boy's diagnosis may be private, but the evidence of credibility is in his reports and the depth of knowledge shown by the paediatrician and psychologist we paid to see.
To refer to it as a "private" diagnosis simply shows ingrained ignorance surrounding invisible disabilities.
Sunday, 16 October 2016
Society, I think I have a problem with you.
It's been over a month since my last post. I have five draft posts which I'm working on, but I need to be in a better frame of mind in order to finish them.
In the meantime, this is something that has been building up and I need to get it off my chest before I can move on to some more positive writing. It's ranty, it's generalising, but from the things I've come across, it is an uncomfortable truth.
In the last month, I have been reading, hearing and watching things that are leaving a very sour taste in my mouth, things which leave me under the impression that people with disabilities are simply a drag on life, on society, an inconvenience that must be borne by parents, communities, society.
Society tells us to be ourselves, as long as it in a way acceptable to them. This blog by DragonRiko explains how this works perfectly.
We have the experience of having a child who ticks many boxes that are considered warning signs for suicide, but because he will only show this behaviour in his safe space (home) and surprisingly (sarcasm alert) won't disclose this information to a stranger who won't accept the words from worried parents, the obvious answer to them, and because they are the professionals They Are Right, is that we are dramatising the whole thing, making it up to cover up our shoddy parenting skills. Society backs this up, and if you need any evidence of that, look at any article about autism in the Daily Mail and go straight to the comments section. It might be claimed that the DM doesn't represent society's views, in my experience it does, but readers of more highbrow papers will find a more palatable way of saying the same thing, but the meaning is still the same.
Text books about autism are usually written by neurotypicals, often including flawed information (male brain anyone? Lack of empathy?) despite autistic people screaming out, desperately trying to help others to understand what it actually feels like to be autistic, and it doesn't always perfectly follow the textbooks. Basic qualifications in autism involve learning the most basic and stereotypical information about autism, no mention of masking or more subtle presentations. I've often thought that a support worker or teacher could learn far more by looking out some blogs by autistic people, or by asking the questions to autistic people in the community.
Autism professionals are very careful to refer to people as with autism rather than autistic, in order to serve their opinions that autistic is offensive, implying that a child or adult might feel defined by their autism (which would apparently be a Very Bad Thing), we are told that having autism is no different to having blond hair, or blue eyes, that it is only a tiny part of who we are, which is bollocks. Being autistic affects every single thing I do, affects everything PDA Boy does, affects everything his older brother does, and that's ok, that's not a bad thing. Except on the whole society perceives it as a problem, so it becomes a bad thing for us as we realise we are somehow defective, rather than accepted as different and appreciated for who we are.
Whilst a child or adult may appear to be functioning at an acceptable level, if they are unable to communicate their distress, and others are not allowed to advocate for them, which so often happens in schools, that person is at a much higher risk of developing severe mental health problems and burnout, which can leave a person very limited and unable to function at all.
On seeking answers, many people in a position of authority; teachers, support workers, autism professionals, will ask a parent if they really want to do this, if they want their child to be labelled. It's obvious that the thought of anyone being diagnosed autistic is abhorrent to the very people who should be the most understanding about how positive a diagnosis can be for a family, even if the only benefit (because let's face it, support isn't exactly easy to come by) is that a family member can be understood and allowed to be who they are, although too often a diagnosis can bring about a search into how to hide the person's autistic traits from society, as they will judge.
Over the years therapies, some life threatening, have been developed with the sole intention to make autistic people appear neurotypical, to attempt to slot autistic people into society, to try to cure them. This isn't led by autistic people themselves, this is led by experts who, whilst on the surface appear to have the autistic person in mind, are forcing NT ideals onto autistics as the only acceptable way to be.
Organisations with the most contact with our children are slaves to functioning labels, with very few exceptions they see a child apparently coping to be the definition of success (credit for this comment must go to another parent in a support group I'm a member of), despite the effects this has on the child and family. For families like mine, this is disastrous news for several reasons:-
A child who masks is generally denied any support, as to teachers/CAMHS/insert other organisation of choice, they are obviously fine, ignoring all evidence that masking exists and is a massive problem to many people.
Support services can be inaccessible as behaviour needs to be witnessed first hand, because parents' accounts are not reliable, and we need to go through more lengthy interrogations and distressing accusations of poor parenting before whoever it is decides that everything's fine, no support necessary.
And the results of this? Well, for my family, the results of this are a family barely coping, but too scared to ask for help for fear of what fresh hell this will unleash onto us. We are a family whose most efficient coping mechanism is to split up PDA Boy and oldest, which in theory sounds easy, but in practice, during the hours when both parents aren't available, or when one parent (usually me) reaches a point where they cannot cope, this is nigh on impossible, and relies on both boys understanding each others' needs, which during melty moments is as improbable as expecting them to understand String Theory. This is what we need help with, but due to the rigid expectations of those who hold the keys to unlock that help, we are not eligible for this support or understanding. We are put in positions where our only hope is to scrimp and save to see someone privately, for diagnosis and other support, but we are still judged for this (please see next post when it has been written!).
Society needs to see bold, obvious signs of disability, or it's assumed that we are faking or not trying hard enough, blue badge holders must prove their disability to the general public, or they may be left nasty letters in their windscreen, you must not walk into a disabled loo looking OK, even though you may have a disability that no-one can see and, shock-horror, you may have a good job and be well dressed and not fit society's narrow definition of what "disabled" looks like, if a person doesn't react in a way that conforms with society's expectations, they are wrong.
Society must be judged on how it treats its most vulnerable members (misquote accredited to various different sources), and right now, the UK needs to buck up. We live in a society where the vulnerable are being more and more marginalised, and the people whose voices are loud enough to be heard don't care and have no respect for those of us who are not round pegs in society's round hole, we are berated and looked down on for not fitting in perfectly, and like so many things, this is simply not good enough.
In the meantime, this is something that has been building up and I need to get it off my chest before I can move on to some more positive writing. It's ranty, it's generalising, but from the things I've come across, it is an uncomfortable truth.
In the last month, I have been reading, hearing and watching things that are leaving a very sour taste in my mouth, things which leave me under the impression that people with disabilities are simply a drag on life, on society, an inconvenience that must be borne by parents, communities, society.
Society tells us to be ourselves, as long as it in a way acceptable to them. This blog by DragonRiko explains how this works perfectly.
We have the experience of having a child who ticks many boxes that are considered warning signs for suicide, but because he will only show this behaviour in his safe space (home) and surprisingly (sarcasm alert) won't disclose this information to a stranger who won't accept the words from worried parents, the obvious answer to them, and because they are the professionals They Are Right, is that we are dramatising the whole thing, making it up to cover up our shoddy parenting skills. Society backs this up, and if you need any evidence of that, look at any article about autism in the Daily Mail and go straight to the comments section. It might be claimed that the DM doesn't represent society's views, in my experience it does, but readers of more highbrow papers will find a more palatable way of saying the same thing, but the meaning is still the same.
Text books about autism are usually written by neurotypicals, often including flawed information (male brain anyone? Lack of empathy?) despite autistic people screaming out, desperately trying to help others to understand what it actually feels like to be autistic, and it doesn't always perfectly follow the textbooks. Basic qualifications in autism involve learning the most basic and stereotypical information about autism, no mention of masking or more subtle presentations. I've often thought that a support worker or teacher could learn far more by looking out some blogs by autistic people, or by asking the questions to autistic people in the community.
Autism professionals are very careful to refer to people as with autism rather than autistic, in order to serve their opinions that autistic is offensive, implying that a child or adult might feel defined by their autism (which would apparently be a Very Bad Thing), we are told that having autism is no different to having blond hair, or blue eyes, that it is only a tiny part of who we are, which is bollocks. Being autistic affects every single thing I do, affects everything PDA Boy does, affects everything his older brother does, and that's ok, that's not a bad thing. Except on the whole society perceives it as a problem, so it becomes a bad thing for us as we realise we are somehow defective, rather than accepted as different and appreciated for who we are.
Whilst a child or adult may appear to be functioning at an acceptable level, if they are unable to communicate their distress, and others are not allowed to advocate for them, which so often happens in schools, that person is at a much higher risk of developing severe mental health problems and burnout, which can leave a person very limited and unable to function at all.
On seeking answers, many people in a position of authority; teachers, support workers, autism professionals, will ask a parent if they really want to do this, if they want their child to be labelled. It's obvious that the thought of anyone being diagnosed autistic is abhorrent to the very people who should be the most understanding about how positive a diagnosis can be for a family, even if the only benefit (because let's face it, support isn't exactly easy to come by) is that a family member can be understood and allowed to be who they are, although too often a diagnosis can bring about a search into how to hide the person's autistic traits from society, as they will judge.
Over the years therapies, some life threatening, have been developed with the sole intention to make autistic people appear neurotypical, to attempt to slot autistic people into society, to try to cure them. This isn't led by autistic people themselves, this is led by experts who, whilst on the surface appear to have the autistic person in mind, are forcing NT ideals onto autistics as the only acceptable way to be.
Organisations with the most contact with our children are slaves to functioning labels, with very few exceptions they see a child apparently coping to be the definition of success (credit for this comment must go to another parent in a support group I'm a member of), despite the effects this has on the child and family. For families like mine, this is disastrous news for several reasons:-
A child who masks is generally denied any support, as to teachers/CAMHS/insert other organisation of choice, they are obviously fine, ignoring all evidence that masking exists and is a massive problem to many people.
Support services can be inaccessible as behaviour needs to be witnessed first hand, because parents' accounts are not reliable, and we need to go through more lengthy interrogations and distressing accusations of poor parenting before whoever it is decides that everything's fine, no support necessary.
And the results of this? Well, for my family, the results of this are a family barely coping, but too scared to ask for help for fear of what fresh hell this will unleash onto us. We are a family whose most efficient coping mechanism is to split up PDA Boy and oldest, which in theory sounds easy, but in practice, during the hours when both parents aren't available, or when one parent (usually me) reaches a point where they cannot cope, this is nigh on impossible, and relies on both boys understanding each others' needs, which during melty moments is as improbable as expecting them to understand String Theory. This is what we need help with, but due to the rigid expectations of those who hold the keys to unlock that help, we are not eligible for this support or understanding. We are put in positions where our only hope is to scrimp and save to see someone privately, for diagnosis and other support, but we are still judged for this (please see next post when it has been written!).
Society needs to see bold, obvious signs of disability, or it's assumed that we are faking or not trying hard enough, blue badge holders must prove their disability to the general public, or they may be left nasty letters in their windscreen, you must not walk into a disabled loo looking OK, even though you may have a disability that no-one can see and, shock-horror, you may have a good job and be well dressed and not fit society's narrow definition of what "disabled" looks like, if a person doesn't react in a way that conforms with society's expectations, they are wrong.
Society must be judged on how it treats its most vulnerable members (misquote accredited to various different sources), and right now, the UK needs to buck up. We live in a society where the vulnerable are being more and more marginalised, and the people whose voices are loud enough to be heard don't care and have no respect for those of us who are not round pegs in society's round hole, we are berated and looked down on for not fitting in perfectly, and like so many things, this is simply not good enough.
Sunday, 4 September 2016
Emily Brontë.
Today I read a piece in The Guardian about Emily Brontë, author of Wuthering Heights.
Article here
As more is understood about autism and women, so we can pick out more and more cases of women in history who are likely to have been aspies. And in my mind, this is fabulous. Sharing the knowledge so that more and more people can be aware that autism does not always equal Rainman, or Sheldon Cooper, or any other stereotypical male autist that society has been conditioned to recognise.
Society needs to understand that a diagnosis of autism, or even speculation of historical figures, is not a doom ladened knell of despair, is not a negative reflection on someone's work, is not a reason to think less of someone, is not a label (RAAAARGH! It's NOT a label, it's a DIAGNOSIS!), does not mean someone is incompetent, is a lesser being or anything like that.
But this is largely how society sees us. So many people have it so, so wrong, and this is distressing for me.
I saw the Guardian article on Facebook, the comments beneath the article were more depressing that I can convey. They were predictable, but still shocking that some apparently intelligent people have such a low opinion of those of us with autism:
(Comments have been slightly changed, but the tone and intent are the same)
Emily Brontë can't have Asperger's because her writing is so good.
Denigrating genius as psychiatric trash. (I reported this comment - assuming that FB cares, that is - this comment was particularly disgusting).
Her understanding of society and humans means she cannot possibly be an aspie.
Ditto emotional depth (something no autistic has apparently).
Why oh why do,we have to label everyone nowadays? (Again, enough with bloody labels!).
I could fill pages with these types of comments, these horrible, ignorant, disablist, offensive comments, but I won't, because life's too short to focus on the tosh spouted by people offended that a beloved author ticked some of the boxes for autism.
However, it is obvious that society is under the wrong impression. Sure some autistic people may appear to lack in empathy, but equally some have too much. We still have emotional depth, and plenty of autistic people make huge successes of themselves supporting others, advocating for their fellow autistics, so somewhere along the line, society has got it wrong, or they are guilty of assuming that everyone with autism is exactly the same.
Rookie mistake, because:
If you've met one person with autism, you've met one person with autism.
Autistic people are a part of society, one could argue that society has been shaped in some part by autism, many of the greatest scientific discoveries were made by people likely to have been autistic.
When it comes to knowledge about autism, the very best people to learn from aren't always the qualified experts, you know, the ones that tell us about lack of empathy and male brains, it's most often the autistic people themselves who are able to give accurate, thoughtful accounts of life on the spectrum. Talks, books, blogs and more that prove our capabilities over and over again.
I think it is so important that we continue to take retrospective looks at history's great and notable people. As humans, we need to do this to further our understanding of ourselves and our peers. As autistic people, it is essential to be able to look in the history books and see that our community are representatives of the great and the good, in fact in many areas, those with autism are over-represented, thinking of the fields of IT, science and possibly the arts and music.
Society has a habit of trampling down those they feel threatened by.
But autism isn't going anywhere, and it's about time society faced up to the fact that we can and will be amazing.
Autistic children and adults are far more likely to be bullied and have low self esteem, we owe it to ourselves to see role models from the past and the present so we can all see that, no matter what society tells us, we are valued members of the human race.
Let autism be recognised and accepted wherever it is.
Emily Brontë may or may not be autistic, we'll never know for sure, but I for one would be thrilled to be a part of the same aspie community as such a talented, insightful, creative author.
Article here
As more is understood about autism and women, so we can pick out more and more cases of women in history who are likely to have been aspies. And in my mind, this is fabulous. Sharing the knowledge so that more and more people can be aware that autism does not always equal Rainman, or Sheldon Cooper, or any other stereotypical male autist that society has been conditioned to recognise.
Society needs to understand that a diagnosis of autism, or even speculation of historical figures, is not a doom ladened knell of despair, is not a negative reflection on someone's work, is not a reason to think less of someone, is not a label (RAAAARGH! It's NOT a label, it's a DIAGNOSIS!
But this is largely how society sees us. So many people have it so, so wrong, and this is distressing for me.
I saw the Guardian article on Facebook, the comments beneath the article were more depressing that I can convey. They were predictable, but still shocking that some apparently intelligent people have such a low opinion of those of us with autism:
(Comments have been slightly changed, but the tone and intent are the same)
Emily Brontë can't have Asperger's because her writing is so good.
Denigrating genius as psychiatric trash. (I reported this comment - assuming that FB cares, that is - this comment was particularly disgusting).
Her understanding of society and humans means she cannot possibly be an aspie.
Ditto emotional depth (something no autistic has apparently).
Why oh why do,we have to label everyone nowadays? (Again, enough with bloody labels!).
I could fill pages with these types of comments, these horrible, ignorant, disablist, offensive comments, but I won't, because life's too short to focus on the tosh spouted by people offended that a beloved author ticked some of the boxes for autism.
However, it is obvious that society is under the wrong impression. Sure some autistic people may appear to lack in empathy, but equally some have too much. We still have emotional depth, and plenty of autistic people make huge successes of themselves supporting others, advocating for their fellow autistics, so somewhere along the line, society has got it wrong, or they are guilty of assuming that everyone with autism is exactly the same.
Rookie mistake, because:
If you've met one person with autism, you've met one person with autism.
Autistic people are a part of society, one could argue that society has been shaped in some part by autism, many of the greatest scientific discoveries were made by people likely to have been autistic.
When it comes to knowledge about autism, the very best people to learn from aren't always the qualified experts, you know, the ones that tell us about lack of empathy and male brains, it's most often the autistic people themselves who are able to give accurate, thoughtful accounts of life on the spectrum. Talks, books, blogs and more that prove our capabilities over and over again.
I think it is so important that we continue to take retrospective looks at history's great and notable people. As humans, we need to do this to further our understanding of ourselves and our peers. As autistic people, it is essential to be able to look in the history books and see that our community are representatives of the great and the good, in fact in many areas, those with autism are over-represented, thinking of the fields of IT, science and possibly the arts and music.
Society has a habit of trampling down those they feel threatened by.
But autism isn't going anywhere, and it's about time society faced up to the fact that we can and will be amazing.
Autistic children and adults are far more likely to be bullied and have low self esteem, we owe it to ourselves to see role models from the past and the present so we can all see that, no matter what society tells us, we are valued members of the human race.
Let autism be recognised and accepted wherever it is.
Emily Brontë may or may not be autistic, we'll never know for sure, but I for one would be thrilled to be a part of the same aspie community as such a talented, insightful, creative author.
Monday, 15 August 2016
Time Machine dreams.
Week four of the summer holidays, and I am writing this post from the loo my secret bunker, the place I go to escape for a few minutes throughout the day, in an attempt to retain some of my sanity.
This is one of those posts that I may regret writing, but it will be an honest one, and hopefully some of you will relate to this and I won't come out of it looking like the world's crappest mother.
Our first two weeks went well, PDA boy was calm, we pootled along with no major catastrophes, and I was smug. I obviously had this PDA parenting malarchy down to a fine art.
Then week three began, and oh Good Lord, I dropped the smug act by Tuesday. PDA boy has started to worry about starting secondary school. And we all know about it. Reassurances are doing nothing, planning a day out has become impossible, but equally staying in doing not a lot is also impossible. Activities get too much, inactivity gets too much. We are at an impassé. Deadlock. We now wait until the strategies start to be more effective again and anxiety lessens. This could be some time.
It is during times like these where I revert to my Time Machine Dreams™.
When I was twelve (and I have to point out I was an incredibly easy teenager, happy to stay at home and do nothing but watch my beloved films whilst playing with toy horses), my ultimate dream was to be a hermit. To live in a house with my dogs, perhaps keep chickens and sheep, but I was very clear that I wanted to be alone.
Obviously I didn't carry out this wish. I met my husband when I was twenty and we now have four children. We have the chickens, the ducks, we had sheep briefly, we now have pigs (and oh my goodness, they are gorgeous! More about them soon).
We go through good patches as a family, and we go through not so good patches, but so far we have a very good track record of coming out of those rough areas, but they are still difficult to navigate without getting too bogged down with everything.
It is times like these when I daydream about what I would do if I had a time machine. And this is where it will sound incredibly selfish, because it wouldn't cross my mind to go and do something wonderful for humanity, in these times I would take myself back twenty years or so and whisper in my younger self's ear that being a hermit might be a wonderful thing. I let my daydream take hold and imagine the house I live in, the space I have, the lack of need for ear plugs, not having to watch Daggerwin on an endless loop, not having the daily forehead slapping moment when I've forgotten to plan tea yet again, not having to worry that my actions have contributed to another meltdown, and feeling close to meltdown myself, not having to plan the finer details of every day whilst simultaneously bearing in mind the boys' own agendas. It's my own private version of It's a Wonderful Life, but I've yet to include a wingless angel.
I think I need these moments of pure selfish fantasy in order to pull myself together and realise that what I have got is ok. More than ok. And given the choice, I wouldn't be without any of them, no matter how tricky things can be, and no matter how exhausting things are.
If I had to choose five people to spend the rest of my life with, to the exclusion of everyone else, it would be my husband and four children, so in that respect I am very lucky. I wouldn't change my life for the world. I wouldn't be without my amazing people.
When I'm at the end of my tether, like now, when my arms and legs are a mess from picking, when my clothes need to be washed but I can't face it yet because they feel right, when my needs are at the bottom of the heap, I need to remind myself that I need some space, I need to de-stress and recharge my batteries, and I reckon that the odd self indulgent dream that helps me to get a temporary grip can only be a good thing. Good for me, and good for my family (as long as I don't actually build said time machine and bog off back to the 1990s).
I'm often reminded that being a parent is difficult, and it is. Being an autistic parent of autistic children is also very hard, particularly when needs clash and we are going through our own individual tricky times. But where we fell today, we have clues to prevent the same happening tomorrow, and hopefully we will succeed and I will regain my irritating smugness at getting it right again.
This is one of those posts that I may regret writing, but it will be an honest one, and hopefully some of you will relate to this and I won't come out of it looking like the world's crappest mother.
Our first two weeks went well, PDA boy was calm, we pootled along with no major catastrophes, and I was smug. I obviously had this PDA parenting malarchy down to a fine art.
Then week three began, and oh Good Lord, I dropped the smug act by Tuesday. PDA boy has started to worry about starting secondary school. And we all know about it. Reassurances are doing nothing, planning a day out has become impossible, but equally staying in doing not a lot is also impossible. Activities get too much, inactivity gets too much. We are at an impassé. Deadlock. We now wait until the strategies start to be more effective again and anxiety lessens. This could be some time.
It is during times like these where I revert to my Time Machine Dreams™.
When I was twelve (and I have to point out I was an incredibly easy teenager, happy to stay at home and do nothing but watch my beloved films whilst playing with toy horses), my ultimate dream was to be a hermit. To live in a house with my dogs, perhaps keep chickens and sheep, but I was very clear that I wanted to be alone.
Obviously I didn't carry out this wish. I met my husband when I was twenty and we now have four children. We have the chickens, the ducks, we had sheep briefly, we now have pigs (and oh my goodness, they are gorgeous! More about them soon).
We go through good patches as a family, and we go through not so good patches, but so far we have a very good track record of coming out of those rough areas, but they are still difficult to navigate without getting too bogged down with everything.
It is times like these when I daydream about what I would do if I had a time machine. And this is where it will sound incredibly selfish, because it wouldn't cross my mind to go and do something wonderful for humanity, in these times I would take myself back twenty years or so and whisper in my younger self's ear that being a hermit might be a wonderful thing. I let my daydream take hold and imagine the house I live in, the space I have, the lack of need for ear plugs, not having to watch Daggerwin on an endless loop, not having the daily forehead slapping moment when I've forgotten to plan tea yet again, not having to worry that my actions have contributed to another meltdown, and feeling close to meltdown myself, not having to plan the finer details of every day whilst simultaneously bearing in mind the boys' own agendas. It's my own private version of It's a Wonderful Life, but I've yet to include a wingless angel.
I think I need these moments of pure selfish fantasy in order to pull myself together and realise that what I have got is ok. More than ok. And given the choice, I wouldn't be without any of them, no matter how tricky things can be, and no matter how exhausting things are.
If I had to choose five people to spend the rest of my life with, to the exclusion of everyone else, it would be my husband and four children, so in that respect I am very lucky. I wouldn't change my life for the world. I wouldn't be without my amazing people.
When I'm at the end of my tether, like now, when my arms and legs are a mess from picking, when my clothes need to be washed but I can't face it yet because they feel right, when my needs are at the bottom of the heap, I need to remind myself that I need some space, I need to de-stress and recharge my batteries, and I reckon that the odd self indulgent dream that helps me to get a temporary grip can only be a good thing. Good for me, and good for my family (as long as I don't actually build said time machine and bog off back to the 1990s).
I'm often reminded that being a parent is difficult, and it is. Being an autistic parent of autistic children is also very hard, particularly when needs clash and we are going through our own individual tricky times. But where we fell today, we have clues to prevent the same happening tomorrow, and hopefully we will succeed and I will regain my irritating smugness at getting it right again.
Tuesday, 9 August 2016
Autism and school.
This is one of the posts I've been trying to write for weeks, inspired by the cygnet course I recently completed.
I'm hoping this works out and I can keep it light and non-ranty, but we'll see. Light and non-ranty aren't strong points of mine!
During the few weeks I attended the cygnet course, (which I think I've said before was generally excellent and well worth being referred to if at all possible), a few things came to light, which made me thoughtful about how autism is perceived by the people in a position of authority, particularly in schools. A few problematic areas, to the course leaders, were not seen as problems to be solved, but simply life, something to endure. But to me, the parent of two boys on the autism spectrum, were issues that have seen one child being removed from school to preserve his failing mental health, and the other so stressed that sometimes he feels suicidal and we can barely cope with his aggression. They are issues which I largely see as avoidable, adjustments that could be made which might make the autistic child's life easier, and would not negatively affect the education of their NT peers at all.
The clearest message of the course was that parents can make the biggest difference for our children. I wholeheartedly agree with this. After all, we know our children best, we spend the most time with them, we love them unconditionally and become their biggest advocates. However, in real life situations, it becomes clear that we are often seen as inconvenient in proceedings, nuisances who want the very best for our children, who want others to understand them like we do, and like they understand themselves. PDA boy has a good grasp as to what overloads him and stresses him out, but as yet he finds it impossible to discuss these things clearly outside of home, so he needs us to communicate on his behalf, something that has proved very tricky.
During the cygnet sessions, the leaders were clear that there were many things that would make our children's lives easier in school, things that could mean better access to education and less overload, presumably leading to fewer meltdowns and disruptive behaviour, but they were also very clear that encouraging an environment to suit all would not be possible, that it would be too much to expect everyone to make the changes necessary.
To name a few of the everyday things that autistic pupils might find difficult (this is obviously not a complete list!):
Noisy and bright lighting
Buzzing smart boards
Displays
Noisy lunch times
Unstructured play time
I struggle to understand why these things cannot be limited or adjusted in order to make learning more accessible to autistic pupils. It makes me think of this picture:
Very often, and not deliberately (I hope!), our children are set up to fail, as in the first of the three pictures.
For a child with sensory difficulties, a primary classroom is set up in a way that does not suit them at all. Displays tend to cover every square inch of wall and ceiling space, they are often laminated so they reflect light.
The smart board and overhead projectors are left on throughout lessons, even when they're not being used, the buzz from these can be as painful and distracting as scratching nails down a blackboard.
So many things that make our children's lives more difficult, and no effort to change these things. When a child predictably cannot cope, they are treated as naughty, disruptive and lazy.
The second picture, to me, represents a child facing those same issues, but with teachers who understand and can use ways to help individual children to keep calm or who recognise overload and use strategies to help the child.
The third picture would be a classroom where lights were not fluorescent monstrosities, where displays are limited and walls are not hidden behind a mountain of reflective clutter, where there is a quieter room option for lunchtime, where children can choose to spend their playtime indoors reading, or in a structured game led by a lunchtime assistant, where teachers understand the little things that can affect a child and ensure their use is limited or that the child is allowed to use their own strategies (taking themselves off to a quieter area, being allowed to fiddle with something, not forced to use eye contact) to make things bearable, without fear of judgement or humiliation from peers or teachers.
But as simple as these sound, when I mentioned it to one of the cygnet leaders, I got the impression that you might as well ask all teachers to learn how to speak a little known dialect fluently and deliver lessons in that language. I feel that autism strategies which from our point of view (our point of view being those of us who truly understand our children, or are autistic ourselves) are seen as essential for the child's wellbeing, from a school point of view are so often seen as unnecessary, and pandering to a child who they see as needing a good telling off and that they simply need to try a little bit harder. Or a scenario that also happens is that autism strategies are put into place, but with little thought or recognition of the needs of the individual child. Like the saying goes, when you've met one child with autism, you've met one child with autism. Not all strategies are going to work for all children.
In a local school with a pupil who had a life changing accident, they were able to make adjustments, individual to that child, which enabled them to take part in all lessons, so we know it can be done.
When it comes to autism and other invisible disabilities, it seems it is fair game to not make individually tailored adjustments, in fact mentioning those words "reasonable adjustments" caused one of the cygnet leaders to laugh and comment at what a wooly, useless term it was.
Of course if you choose to look at adjustments as having to cover everyone in the autism community, it would be nigh on impossible to meet everyone's needs in the same place at the same time, but in a mainstream classroom setting with limited numbers of children with special needs, there are adjustments that can be made which will make their individual lives easier, without affecting other children's learning. It was also pointed out to me that there were a number of teachers who didn't believe in invisible disabilities, and that they had enough pressure without having to take on more and learn about their neurodiverse pupils.
Why in 2016 are we accepting this? Autism is here, and it's here to stay. Many of the world's greatest discoveries were arguably made by people on the spectrum. Many of the world's most talented actors, singers, artists, scientists and IT geniuses are neurodiverse. Imagine how much we could do if our children, instead of having burnt out parents fighting endlessly for scant support, had a system which automatically saw them and their NT counterparts treated the same, and given the same potential, in a system geared up to be truly accessible to all, instead of accessible only with a shed-load of strategies to enable certain children to cope. It wouldn't necessarily cost a fortune to implement, and the main thing needed is an attitude shift. But when those in positions to deliver this change are not doing it, or are coming into it with an "I can't possibly change a thing" attitude, it starts to look a bit hopeless for our children.
We need people to stand up to the mighty OFSTED, challenge their criteria that makes life difficult for those with neurological disabilities, and we need to inspire teachers, we need to lose this stigma that autism is negative. And, for that matter, we need to make sure that autism training, whether aimed at schools or at parents, is not delivered in a way that leaves massive gaps in understanding, which I believe it currently does. I think the work of autism outreach workers is amazing, but we need more like them, each with fewer caseloads, so they can lead training in a more individual way, but we do need teachers to be receptive to their knowledge, and not sit in meetings bleating "but we can't see it...." and generally being obstructive, as has been my experience.
The inspirational Tom Bowes AKA Autistic Genius has proposed that the promised increase in autism training should involve actually autistic people. Who better to spot the flaws in the current training information. I would also go a step further and suggest that classrooms should be assessed by autistic people. I personally found PDA boy's classroom incredibly difficult to spend time in, and would have been able to make several suggestions to make it more bearable.
https://petition.parliament.uk/petitions/161670
Here is the petition set up by Tom Bowes. (Apologies, blogspot has some sort of glitch which means the iPad turns itself off when I try to insert a link!)
So there, neither light nor non-ranty, and probably disjointed and rambly to boot, but something that's been on my mind a while.
I'll give you a piggy update next post, which I promise will be more lighthearted than this!
I'm hoping this works out and I can keep it light and non-ranty, but we'll see. Light and non-ranty aren't strong points of mine!
During the few weeks I attended the cygnet course, (which I think I've said before was generally excellent and well worth being referred to if at all possible), a few things came to light, which made me thoughtful about how autism is perceived by the people in a position of authority, particularly in schools. A few problematic areas, to the course leaders, were not seen as problems to be solved, but simply life, something to endure. But to me, the parent of two boys on the autism spectrum, were issues that have seen one child being removed from school to preserve his failing mental health, and the other so stressed that sometimes he feels suicidal and we can barely cope with his aggression. They are issues which I largely see as avoidable, adjustments that could be made which might make the autistic child's life easier, and would not negatively affect the education of their NT peers at all.
The clearest message of the course was that parents can make the biggest difference for our children. I wholeheartedly agree with this. After all, we know our children best, we spend the most time with them, we love them unconditionally and become their biggest advocates. However, in real life situations, it becomes clear that we are often seen as inconvenient in proceedings, nuisances who want the very best for our children, who want others to understand them like we do, and like they understand themselves. PDA boy has a good grasp as to what overloads him and stresses him out, but as yet he finds it impossible to discuss these things clearly outside of home, so he needs us to communicate on his behalf, something that has proved very tricky.
During the cygnet sessions, the leaders were clear that there were many things that would make our children's lives easier in school, things that could mean better access to education and less overload, presumably leading to fewer meltdowns and disruptive behaviour, but they were also very clear that encouraging an environment to suit all would not be possible, that it would be too much to expect everyone to make the changes necessary.
To name a few of the everyday things that autistic pupils might find difficult (this is obviously not a complete list!):
Noisy and bright lighting
Buzzing smart boards
Displays
Noisy lunch times
Unstructured play time
I struggle to understand why these things cannot be limited or adjusted in order to make learning more accessible to autistic pupils. It makes me think of this picture:
Very often, and not deliberately (I hope!), our children are set up to fail, as in the first of the three pictures.
For a child with sensory difficulties, a primary classroom is set up in a way that does not suit them at all. Displays tend to cover every square inch of wall and ceiling space, they are often laminated so they reflect light.
The smart board and overhead projectors are left on throughout lessons, even when they're not being used, the buzz from these can be as painful and distracting as scratching nails down a blackboard.
So many things that make our children's lives more difficult, and no effort to change these things. When a child predictably cannot cope, they are treated as naughty, disruptive and lazy.
The second picture, to me, represents a child facing those same issues, but with teachers who understand and can use ways to help individual children to keep calm or who recognise overload and use strategies to help the child.
The third picture would be a classroom where lights were not fluorescent monstrosities, where displays are limited and walls are not hidden behind a mountain of reflective clutter, where there is a quieter room option for lunchtime, where children can choose to spend their playtime indoors reading, or in a structured game led by a lunchtime assistant, where teachers understand the little things that can affect a child and ensure their use is limited or that the child is allowed to use their own strategies (taking themselves off to a quieter area, being allowed to fiddle with something, not forced to use eye contact) to make things bearable, without fear of judgement or humiliation from peers or teachers.
But as simple as these sound, when I mentioned it to one of the cygnet leaders, I got the impression that you might as well ask all teachers to learn how to speak a little known dialect fluently and deliver lessons in that language. I feel that autism strategies which from our point of view (our point of view being those of us who truly understand our children, or are autistic ourselves) are seen as essential for the child's wellbeing, from a school point of view are so often seen as unnecessary, and pandering to a child who they see as needing a good telling off and that they simply need to try a little bit harder. Or a scenario that also happens is that autism strategies are put into place, but with little thought or recognition of the needs of the individual child. Like the saying goes, when you've met one child with autism, you've met one child with autism. Not all strategies are going to work for all children.
In a local school with a pupil who had a life changing accident, they were able to make adjustments, individual to that child, which enabled them to take part in all lessons, so we know it can be done.
When it comes to autism and other invisible disabilities, it seems it is fair game to not make individually tailored adjustments, in fact mentioning those words "reasonable adjustments" caused one of the cygnet leaders to laugh and comment at what a wooly, useless term it was.
Of course if you choose to look at adjustments as having to cover everyone in the autism community, it would be nigh on impossible to meet everyone's needs in the same place at the same time, but in a mainstream classroom setting with limited numbers of children with special needs, there are adjustments that can be made which will make their individual lives easier, without affecting other children's learning. It was also pointed out to me that there were a number of teachers who didn't believe in invisible disabilities, and that they had enough pressure without having to take on more and learn about their neurodiverse pupils.
Why in 2016 are we accepting this? Autism is here, and it's here to stay. Many of the world's greatest discoveries were arguably made by people on the spectrum. Many of the world's most talented actors, singers, artists, scientists and IT geniuses are neurodiverse. Imagine how much we could do if our children, instead of having burnt out parents fighting endlessly for scant support, had a system which automatically saw them and their NT counterparts treated the same, and given the same potential, in a system geared up to be truly accessible to all, instead of accessible only with a shed-load of strategies to enable certain children to cope. It wouldn't necessarily cost a fortune to implement, and the main thing needed is an attitude shift. But when those in positions to deliver this change are not doing it, or are coming into it with an "I can't possibly change a thing" attitude, it starts to look a bit hopeless for our children.
We need people to stand up to the mighty OFSTED, challenge their criteria that makes life difficult for those with neurological disabilities, and we need to inspire teachers, we need to lose this stigma that autism is negative. And, for that matter, we need to make sure that autism training, whether aimed at schools or at parents, is not delivered in a way that leaves massive gaps in understanding, which I believe it currently does. I think the work of autism outreach workers is amazing, but we need more like them, each with fewer caseloads, so they can lead training in a more individual way, but we do need teachers to be receptive to their knowledge, and not sit in meetings bleating "but we can't see it...." and generally being obstructive, as has been my experience.
The inspirational Tom Bowes AKA Autistic Genius has proposed that the promised increase in autism training should involve actually autistic people. Who better to spot the flaws in the current training information. I would also go a step further and suggest that classrooms should be assessed by autistic people. I personally found PDA boy's classroom incredibly difficult to spend time in, and would have been able to make several suggestions to make it more bearable.
https://petition.parliament.uk/petitions/161670
Here is the petition set up by Tom Bowes. (Apologies, blogspot has some sort of glitch which means the iPad turns itself off when I try to insert a link!)
So there, neither light nor non-ranty, and probably disjointed and rambly to boot, but something that's been on my mind a while.
I'll give you a piggy update next post, which I promise will be more lighthearted than this!
Tuesday, 26 July 2016
The PIG Soapbox.
I've let blogging slide lately. There's been a lot to deal with, school trips to be endured, school play to get out of the way, secondary school transition to fret about.
I have started about five blog posts, but without exception they have all been angry and ranty, which isn't the route I want to go down, so they are festering as draft posts until I can give them the calm attention they need.
Today's post will not be ranty at all, and all credit goes to someone who suggested I blogged about something else that is going on in the PDA Soapbox household at the moment:
Pigs.
We are getting pigs, and we are all incredibly excited, some of us so much that rage flares, but on the whole the planning and preparation that is going into getting our first pigs is a very happy time.
Just to give you some background information, we have a very small field a couple of miles from home. It is our haven, the place we go to to escape from the noise and bustle of everyday life. We keep chickens and ducks, and soon we will keep pigs.
In the last couple of years, as we've been fighting and surviving through assessments and diagnoses, and through the trauma of our oldest in school and the decision to home educate him, our field has become something of a chore, we have lost interest, we haven't spent the time up there that we have done in the past. We've all lacked energy and interest.
The decision to keep pigs has brought the energy zinging back. Once again we are spending whole evenings at our field, building fences, fighting off North Yorkshire's most vicious midges, and yesterday, building a pig shelter out of sixteen straw bales.
Usually a task like this would see our oldest (15, almost certainly PDA) trying to take control and putting everyone's backs up and PDA boy doing the same, but ending up throwing punches in frustration. In short, any group activity like this usually ends in meltdowns.
Yesterday went rather differently. The building of the shelter was separated into three parts, and each of us was in charge of a different area each, satisfying our individual control freakery.
Oldest was in charge of the logistics of moving the straw bales from where they had been dropped off to the area we planned to build, I was the master builder, PDA boy was chief basher, hammering thin wooden stakes through the straw bales to keep them anchored to each other and, hopefully, to the ground. Time will tell how successful our attempt is, when there is a resident pig to rub against the carefully placed walls!
For the first time in a long time, we felt like a team. We worked together well, and all have a huge sense of pride in our achievements. The first day of the summer holidays was an epic success.
On to the pigs.
We are getting three pigs. The first is an adult micro pig called Winston. He belongs to friends and is currently living in a place where he isn't being looked after as well as he should, so he is coming to us as soon as we are ready. He is black and about the size of a very fat Labrador.
Of course it would be cruel to keep him all alone, so we feel it is our duty as caring future pig owners to make sure Winston has friends.
Out of the goodness of our hearts, we have found him two little, tiny piglets who are as yet too young to leave their mother. They will join our founding herd of little pigs in eleven days (not that we're counting or anything...).
I'm not going to jinx the process by discussing these, but will update and blog about them when I can.
The start of our summer has been a resounding success. Today we are having a rest day so we have the energy to tackle tomorrow, more fencing and making sure the pig area has no nails left lying around.
I sincerely hope the holiday carries on as well as it has started!
I have started about five blog posts, but without exception they have all been angry and ranty, which isn't the route I want to go down, so they are festering as draft posts until I can give them the calm attention they need.
Today's post will not be ranty at all, and all credit goes to someone who suggested I blogged about something else that is going on in the PDA Soapbox household at the moment:
Pigs.
We are getting pigs, and we are all incredibly excited, some of us so much that rage flares, but on the whole the planning and preparation that is going into getting our first pigs is a very happy time.
Just to give you some background information, we have a very small field a couple of miles from home. It is our haven, the place we go to to escape from the noise and bustle of everyday life. We keep chickens and ducks, and soon we will keep pigs.
In the last couple of years, as we've been fighting and surviving through assessments and diagnoses, and through the trauma of our oldest in school and the decision to home educate him, our field has become something of a chore, we have lost interest, we haven't spent the time up there that we have done in the past. We've all lacked energy and interest.
The decision to keep pigs has brought the energy zinging back. Once again we are spending whole evenings at our field, building fences, fighting off North Yorkshire's most vicious midges, and yesterday, building a pig shelter out of sixteen straw bales.
Usually a task like this would see our oldest (15, almost certainly PDA) trying to take control and putting everyone's backs up and PDA boy doing the same, but ending up throwing punches in frustration. In short, any group activity like this usually ends in meltdowns.
Yesterday went rather differently. The building of the shelter was separated into three parts, and each of us was in charge of a different area each, satisfying our individual control freakery.
Oldest was in charge of the logistics of moving the straw bales from where they had been dropped off to the area we planned to build, I was the master builder, PDA boy was chief basher, hammering thin wooden stakes through the straw bales to keep them anchored to each other and, hopefully, to the ground. Time will tell how successful our attempt is, when there is a resident pig to rub against the carefully placed walls!
For the first time in a long time, we felt like a team. We worked together well, and all have a huge sense of pride in our achievements. The first day of the summer holidays was an epic success.
On to the pigs.
We are getting three pigs. The first is an adult micro pig called Winston. He belongs to friends and is currently living in a place where he isn't being looked after as well as he should, so he is coming to us as soon as we are ready. He is black and about the size of a very fat Labrador.
Of course it would be cruel to keep him all alone, so we feel it is our duty as caring future pig owners to make sure Winston has friends.
Out of the goodness of our hearts, we have found him two little, tiny piglets who are as yet too young to leave their mother. They will join our founding herd of little pigs in eleven days (not that we're counting or anything...).
I'm not going to jinx the process by discussing these, but will update and blog about them when I can.
The start of our summer has been a resounding success. Today we are having a rest day so we have the energy to tackle tomorrow, more fencing and making sure the pig area has no nails left lying around.
I sincerely hope the holiday carries on as well as it has started!
Friday, 8 July 2016
A bizarre proud day post!
Today I have brought my boys home and I am bursting with pride (and relief). You'd think PDA boy had won a Nobel prize of some sort, when in fact my pride is for a very weird reason.
PDA boy has started to show clear signs of demand avoidance in school. (See, I told you it was a weird reason!)
Actually, thinking about it, the last time I felt pride like this was when my daughter moved school in year 2, she went from being a silent little mouse to a complete chatterbox. When my husband and I were told that she talked too much in class, we were quite teary in our pride that she was finally talking in school!
Since PDA boy did his SATs, he has avoided work as much as possible. He will do this by cleverly distracting his teacher, using humour, as well as a more obvious plain refusal to work (in fact I only learnt this week that during his SATs maths exam, he closed the paper and refused to finish it).
In the last couple of weeks, the signs of avoidance have been much clearer. He has started pacing round the room. He is avoiding all academic work and needing more support.
This week at one point, he stood up, shouted "Abracadabra" and got under a table, where he stayed for half an hour.
A welcome side effect of this more obvious demand avoidance has been a more settled boy at home, sure we've had outbursts, but he is taking himself upstairs to play on his Xbox and give himself a chance to wind down after a day, we haven't had the need for 100% supervision that we do when his mask is more firmly in place.
I don't know if pride is a normal reaction for this behaviour, but I'm so proud that he finally feels he can show how he's feeling, and I'm relieved that he's not swearing and punching in school, as that would open up a whole new set of challenges.
In the last few weeks, I feel that PDA boy has really started to come to terms with his diagnosis, and he's talking about it more openly to certain people, and is starting to understand that there are things he can do to help himself feel happier or less overwhelmed. Whether this is a sign of growing maturity, or that he simply needed time to get his head around things, I have no idea, but we are welcoming this phase with open arms.
For so long, fitting in and appearing neurotypical has been PDA boy's priority. Even though this leaves him feeling exhausted, angry and, at times, suicidal, he has put most of his effort into being like every other child in his class.
I truly hope that this new openness continues when he starts secondary school in September, as I feel this will be his big chance to receive the support he so desperately needs.
As he prepares to leave primary school and start this new adventure, I'm finally starting to feel cautiously optimistic about PDA boy's education. Long may it last!
PDA boy has started to show clear signs of demand avoidance in school. (See, I told you it was a weird reason!)
Actually, thinking about it, the last time I felt pride like this was when my daughter moved school in year 2, she went from being a silent little mouse to a complete chatterbox. When my husband and I were told that she talked too much in class, we were quite teary in our pride that she was finally talking in school!
Since PDA boy did his SATs, he has avoided work as much as possible. He will do this by cleverly distracting his teacher, using humour, as well as a more obvious plain refusal to work (in fact I only learnt this week that during his SATs maths exam, he closed the paper and refused to finish it).
In the last couple of weeks, the signs of avoidance have been much clearer. He has started pacing round the room. He is avoiding all academic work and needing more support.
This week at one point, he stood up, shouted "Abracadabra" and got under a table, where he stayed for half an hour.
A welcome side effect of this more obvious demand avoidance has been a more settled boy at home, sure we've had outbursts, but he is taking himself upstairs to play on his Xbox and give himself a chance to wind down after a day, we haven't had the need for 100% supervision that we do when his mask is more firmly in place.
I don't know if pride is a normal reaction for this behaviour, but I'm so proud that he finally feels he can show how he's feeling, and I'm relieved that he's not swearing and punching in school, as that would open up a whole new set of challenges.
In the last few weeks, I feel that PDA boy has really started to come to terms with his diagnosis, and he's talking about it more openly to certain people, and is starting to understand that there are things he can do to help himself feel happier or less overwhelmed. Whether this is a sign of growing maturity, or that he simply needed time to get his head around things, I have no idea, but we are welcoming this phase with open arms.
For so long, fitting in and appearing neurotypical has been PDA boy's priority. Even though this leaves him feeling exhausted, angry and, at times, suicidal, he has put most of his effort into being like every other child in his class.
I truly hope that this new openness continues when he starts secondary school in September, as I feel this will be his big chance to receive the support he so desperately needs.
As he prepares to leave primary school and start this new adventure, I'm finally starting to feel cautiously optimistic about PDA boy's education. Long may it last!
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