While I have been striving to write, and succeeding in some measure, I have not been awake enough this week to add to this blog. This one, in its current state, needs thought and care for all sorts of reasons. I have written once a day, of which I am truly proud, but it has mostly been fiction, and I have not spent any time editing. If you are interested in discovering the more whimsical aspect of my mind, please do pop in over at Imps Bely!
I was wanting to stay connected with you, however, and that led me to revisit some of my older posts. I wondered if they still rang true, and in truth I hope many did not.
I’m afraid that the world of special needs education and disability has not improved in the last decade. I fear that it has become harder to meet the needs of such children, and I fear for my children what life as an adult with additional needs will be like.
Firstly… it reminds me of a time when Youngest was at his lowest ebb. When he was so tired that he was unable to get out of bed. When he was eating next to nothing, and when our parental worry levels were very very high. None of that is true right now. Currently, he is the child we worry least about. School staff work hand in hand with us to support him, and he is thriving. He has not had a tube feed in about two months and is maintaining his weight. It is a miraculous thing to watch. He still needs a wheelchair, but not constantly. So he and we have made progress.
Secondly… it reminds me of a very traumatic time when trust between me and school had vanished and I was left bereft and confused. That was sadly never resolved, but I have gone on to forge wonderful relationships with his current school. Again, really lovely progress.
Thirdly… and most sadly I think. In many ways, I could have written this a few weeks ago about another school, another child. And the words would have been so, so similar. I am still confused and bereft at how trust can disappear without warning, without explanation. And I still believe that teachers and school staff have far more power than they realise. They shape the way we parents think and behave far more than they think… sometimes for the good, but sometimes sadly, to the detriment of a vulnerable young person.
I wonder what you think. Does what I describe seem familiar to you? Have you experienced a similar situation? How did you deal with it?
I write a lot about school here. Sadly, much of that writing is about Struggle, Suffering and Silence. Because for children with special educational needs, or special needs at all in fact, school is more often than not a very difficult place to be.
This becomes a life struggle for parents because school plays such an important role in the life of a child and therefore their family. Children spend seven hours, five days a week in school… thirty-five hours a week of a maximum of seventy waking hours in that same time. Add in homework and it is fair to assume that half of every child’s waking time is spent dealing with school.
If school feels safe, if school includes a group of friends, if school includes adults who make you feel heard and protected, and if school brings out a child’s potential (the origin of the word “educate”), then that child will love school and look forward to the vast majority of school days.
But imagine if none of these things are true. Then school consists of the following:
control over one’s movements
control over one’s basic needs (think of the rules around going to the toilet, or having a drink, or eating)
isolation, and loneliness
stagnation
How can anyone willingly approach an establishment, a building that offers them these things on a daily basis? Is it not understandable that a child experiencing this will wish to protect themselves and eventually throw all energies into avoiding such conditions?
I asked you last week how you and your child or children felt about the new school year. I am experiencing a first this year: all three Offspring are relaxed about their education (within the limits of their special needs). None of us are living in fear or dread, and it is a sad truth that in sixteen years of school life, 2018 is the first time I can say that honestly. So I was interested to know my audience a little better:
I haven’t closed this poll yet, because it has been less than a week, but already I am struck by the sadness the current results leave me with. Nobody who answered is excited about school. Nobody. I have a little hope that maybe the results will change, but that will depend on visitors! Go read and make your voice heard too.
In fact, an overwhelming majority of families are experiencing dread. A few of your children seem alright, and I’m guessing that they are young. The other emotion I see is relief, and I can completely empathise with that. When we have children with additional needs, the holidays are tremendously difficult. There is a lack of structure that tends to cause uncertainty in children who experience anxiety. Often, we mums are alone in trying to keep them happy and occupied all day,e very day. they have few friends due to their differences, so the summer holiday in particular can feel like an endless period of traumatic isolation. In this situation, school is absolutely a relief, but when we know that school will be a different kind of trauma, that relief is tinged with all sorts of negative emotions.
And then I wrote last week about school phobia, and asked a question of you all:
We are clearly undergoing a very difficult time as parents of children with SEND (special educational needs and disabilities). I hear of more and more parents whose children are excluded from school unlawfully. I hear of more and more schools who are “encouraging” such parents to explore the world of home education (again, unlawfully). Our children are feeling increasingly unwanted and resources to meet their needs are becoming more scarce. There are many reasons for all of this, but right now, I think it is important to acknowledge that this is happening. I had heard of the increase in SEND children being de-registered by their parents and educated at home, but had not thought a great deal more about it. It is very difficult to have an accurate picture because such data is nor readily available.
My blog is tiny. I have very few followers objectively (though I appreciate each one of you more than you might realise!), and also few visitors. I admit I would love more of you, and we may grow, but as of now I am tiny. So my poll is not significant in any statistical way. yet the results of this poll so far have left me floored. 80% of those of you who answered have removed their children from school due to phobia.
I want to thank you on behalf of your children… thank you for listening to them, for hearing them and for protecting them.
I want you to know that you have enormous courage, and that you have what is needed to help that child grow and flourish.
I hope that one day schools and the education system as a whole realise the weight of responsibility that they have in “bringing out potential”, and protecting our children, and that today they are failing for a large number of their most vulnerable charges.
More recently, I have been thinking about consent, self-determination and how this applies or should apply to children. Because it is September, I wonder how it applies to a child who is trying desperately to protect him or herself from a situation that causes them constant pain. So I asked you if a child should be allowed to say “no” to school. This was more recent, but so far, the unanimous verdict is “yes”.
The interesting thing is that this week, a case was heard in the Upper Tribunal in which the judge ruled that a child’s opposition to a school placement could determine whether that placement is appropriate or not if the opposition is related to the child’s special needs. If you are so inclined, or if this could be of use to your particular case, here is the link.
The more I think about it, the more I believe that we have a duty to protect our children’s human rights, and that these are actually quite clear and simple to understand. As parents, we tend to think of school as a Mighty Authority and indeed, they can be. So it becomes very difficult to protect our vulnerable children. Authorities would rather put the blame on us and send us on parenting courses than look at their role in the situation. But more and more, I cannot agree.
I cannot agree with an environment that does not allow a child to empty its bladder when they feel the need. I cannot agree with an environment that allows a child to be in the same room as those that bully him or her. I cannot agree with an environment that places more importance on uniform than it does on a child’s well being.
So if the adults around the child whose job it is to protect and nurture them are not doing so, what is that child to do? If parents keep forcing them into an environment that feels unsafe? If school teachers continually fail to recognise distress?
Can we truly blame such a child for “acting out”? For “truanting”? For “school refusing”?
Personally, I think not.
Personally, I think that we grown-ups need to own this problem and look again at our vulnerable Littles. I think that we need to re-assess what we expect of school at a basic level. Maybe a school should primarily be a space that invites All children, meets their basic needs and makes them feel safe. Maybe that school would then find the business of educating far easier and more rewarding?
I need to talk about consent, because I have three children who are growing up but who still need support. And that is just the tip of the iceberg.
We have children, and we look after them. We care for them, we protect them, we raise them. And at some point, they become in some way autonomous.
We appear to have determined the age of autonomy, or consent, when it comes to sexuality: 16. Language around consent is almost exclusively reserved for sexual behaviour, and there is surprisingly little talk of emotional maturity, of the fact that human beings rarely develop according to legal descriptions.
At the same time as we determine a sixteen year old to be sexually mature, we do not grant them the same privilege in other aspects of their lives. In fact, the years between 16 and 18 years are frighteningly grey areas in terms of rights and responsibilities. I say frightening, because there is scope for so much confusion.
Let me share an example…
Your sixteen year old is disillusioned with school and wants to go to work. Is this legally possible? Many parents will search the internet for the answer, which should surely be a simple yes or no?
England
You can leave school on the last Friday in June if you’ll be 16 by the end of the summer holidays.
You must then do one of the following until you’re 18:
stay in full-time education, for example at a college
The law is different in other parts of the UK, which simply state that you may leave school when you are 16 (dates are specified), but make no mention of further requirements for education or training.
Now consider this:
Childline, a highly respected and recognised charity gives the following advice in answer to the same question:
So actually, I don’t know the answer. It seems no-one really does.
Faced with this kind of contradiction, it is at least a relief to know where we stand with sexual consent I suppose!?
But really, what I want to get down to is that consent is reliant on capacity. The capacity to understand the information that is relevant to the question. The capacity to retain that information. The capacity to foresee consequences, weigh the information up and make an informed decision. And finally, the capacity to communicate that decision.
This list is not made up. It comes from the Mental Capacity Act of 2005 and is used primarily by health professionals to ensure that patients are able to give informed consent to treatment. It is often talked of in the world of young people and adults with additional needs.
Without this capacity, consent is not possible because to agree to something you must first understand it.
My question now is this:
If my 15 year old has the capacity to understand and give informed consent about a medical procedure, can he then refuse consent?
(Spoiler alert: yes he can… though serious discussions will be had).
Question 2:
If my 15 year old has the capacity to understand a situation at school, experiences trauma from it and refuses to consent to education in that setting, does she have the right to do so?
In other words, does she have the right to protect herself?
…..?
I don’t have the correct legal answer to this. I’m not sure anyone does. It might make an interesting legal experiment. But I’m interested in your opinions, your thoughts because this is far more a moral and ethical question than a legal one. Please comment… I can’t do this one on my own.
One of my dearest friends, a lady to whom I look to for guidance, reassurance and guidance, and all-out awesome Dudette, Yvonne Newbold, often says this of our children with additional needs:
“Keep them alive til twenty-five!”
Because I know and love her, and she is Wise, I have always taken on faith that she is right. But because I am not good at faith, and because I Need to Know the Future and Control All Things, I have struggled to think, to hope that it could apply to my family.
Funny thing… I’m pretty sure she’s right. And I’m hoping that my little revelation can maybe provide reassurance and hope to some of you whose Offspring are younger than mine.
My kids are awesome. Really quite brilliant. They have also been Challenging and often Failed by the System.
[Do you notice I appear to be capitalising a lot? Hmm. strange. Must be significant in some way.]
Until this last year, we have tried and tried to make them fit the mould. By which I mean we have tried to educate them in the way that our society expects children to be educated. And it really hasn’t worked. Even with the extra support and resources of specialist school. Because even those schools are restricted and restrained by the national curriculum and the “we know better” attitude that those in authority have. Never mind that some children simply cannot learn those things in those ways in that timeline.
This year something magical happened.
Time came through for us in a major way.
The two Eldest, for whom school simply does not work, are now both over 16 years old. And that, my friends, is a game-changer here in the UK. The National Curriculum no longer applies, so a strait-jacket is removed.
In the normal scheme of things, our British young people are subjected to national accredited examinations (GCSEs) at 16 years old. A ludicrous set of qualifications by pretty much any other nation’s reckoning. But recently, our government decided that they were exceedingly important, and should actually be made more important and harder to pass. The articles I have read this year regarding children’s mental health and these exams is enough to make anyone’s face ashen (though not, apparently, our government ministers).
In the normal scheme of things, you must pass at least 5 GCSEs with good grades in order to access any further education, leading to university two years later, then a (decent) job. The message is not so much a decent job as any job at all. The message given to young teenagers (from about age 11 nowadays) is that GCSEs are KEY to any success in life.
Eleven years old.
Good GCSEs or a failed life.
Oh my… there’s a message.
And we buy into it as parents too!! Even up until last October, I did everything I could to keep my breaking Girl going to school because it was this all-important GCSE year!
She didn’t make it. So she has no GCSEs.
And do you know something? The world did not end. In fact, the world has blossomed with opportunity. The world is her oyster! We all realised that exams are absolutely a path to adult life, but adult life will happen with or without them. And the success that comes with that is largely up to her to define, then realise.
With time, my Challenging Darlings are becoming mature, kind, compassionate, responsible young adults. They have limitations, but then show me anyone who does not.
With Time, I am realising that the world and life have a tendency to happen. If they are alive, of course.
So it became critical to remove school from their lives, because school was at risk of killing them. This sounds dramatic, but is not. We deal in dark humour in our family, and suicide is a topic that we have to talk about… we talk about those thoughts that happen when life feels too hard. Luckily, they are mostly in the past for now.
Or the damage our vocabulary causes to already vulnerable children…
I mentioned in a recent post that I would need to tackle the topic of school refusal in a separate post. Here it is.
At various times over the past sixteen years, all of my children have experienced extreme anxiety about going to school. This really is not to be confused with the reluctance most children feel in the early mornings or the moans they may make regarding a teacher or the annoyance of a fellow student. The kind of anxiety I am talking about is terror-inducing, blind panic, breathless fear that can also lead to vomiting at the mere thought of school.
In any other sphere, questions would be asked: what is happening in this place to cause such fear?
In any other sphere, that child would be protected from the environment that causes such distress until such time as the problem is resolved.
In any other sphere, the environment would be investigated, probed, cautioned.
But this is the world of childhood and school. And in this world, such rules of decency, kindness and compassion are often, bewilderingly turned upside down.
In the world of school, this same child is branded. “School refuser”.
The very term implies control, manipulative behaviour, choice. The term puts blame onto a child rather than seeking the reason for the anxiety. Indeed, it often takes a great deal of time for schools to acknowledge that anxiety is a factor.
Young Minds, a leading UK charity in the sector of children’s mental health, has more information on school refusal and how to deal with it. Their information is good and valuable, but I still rail against the language used. “Refuse”, “won’t”, “tantrum”… all these words imply control and my experience and that of many other parents is that a child in this situation has no control whatsoever.
In fact, control is so far out of their reach that they exist in a maelstrom of panic, fear and uncertainty. Try and remember one moment in your life when you felt out of control. These are fortunately not too common for most. Most of us can control much in our life. When, what and how we eat, what we wear, who we spend time with, how often we wash… and that just covers the basics. But occasionally, something happens that pulls the rug out from under our feet and everything goes into free fall. Remember?
Remember the dizzying feeling, the increased heartrate, the nausea? Remember the million questions inside your mind that buzz around, never standing still enough for you to identify them, much less answer them or do anything about them? Remember the dread at having to communicate to someone? Maybe you failed an exam… and had to tell your parents that your plans had just fallen through? Maybe someone close to you died. Maybe your baby was just diagnosed with leukaemia? Maybe some tiny thing left you reeling because life suddenly is no longer what you thought it was.
In that moment, what were you actually capable of?
When we are in fight/flight/freeze mode, our prefrontal cortex shuts down. The part of our brain responsible for planning, decision making and social behaviour is closed for business. Why? Very simply because every ounce of energy has been redirected by a surge of adrenaline to power muscles. Digestion also shuts down (hence nausea, and vomiting). The brain senses danger and danger requires flight. This requires power to muscles, so all available resources of blood and oxygen are directed there.
The next time you come across a child who is “refusing” to do something, ask yourself: is there any chance, any chance at all that this child is frightened and in fight/flight mode? If so, he or she are incapable of processing information, and threats will only push them deeper into this defensive position.
The one thing I liked about the Young Minds article I linked to above was that they also refer to school refusal as school phobia. This is far more reflective of reality, yet it is a term that has yet to make its mark.
It seems that for many, many reasons, there are an increasing number of children and young people in the UK who are “school refusing”. Coincidentally or not, we are seeing an unprecedented increase in young people with mental health problems, and adolescent suicide is not the heart stopping shock it once was. As a nation, these are problems that we must address, fast, if we are to prevent a generation or more of deeply disturbed young adults who will find independence potentially impossible.
The problems of the education system, and especially where it concerns vulnerable young people sends my mind in a spin and a spiral of doubt, despair and anger. That is not very helpful.
So here, I wanted to talk about language. I want to ask each parent, child, professional to shift their language.
When you find yourself saying “won’t”, switch to “can’t”.
When you find yourself saying “refuses”, switch to “is frightened”.
When your find yourself saying “yes you can”, switch to “how can I help”.
And if your child is so frightened of school, please please listen to them. You could help avoid severe trauma and years of mental ill-health. If they are able to get to school, give them a way out in case of need. One parent I heard allows her daughter to have a phone at school in her pocket (yes, against the rules… when schools truly understand the problem, we parents will more easily be able to follow those rules). If the daughter texts a full stop, mum comes to pick her up.
Some schools are amazing and understand the need for compassion, kindness and time. With these, you as a parent can come up with a plan that allows an escape when the situation is untenable. If your school cannot, then you sometimes need to be a little creative… a forgotten appointment can be a necessary fib in order to keep your child safe.
I will no doubt have readers who are appalled at the thought of lying to a school or “letting the child control the situation”. To you, I say please read again.
A child who cannot go to school, who is throwing themselves across the room, self-harming, vomiting, experiencing headaches daily, attacking their parents or siblings is not a naughty child. This child is in distress and we must listen. If the professionals around the child are unable to, it behoves us as their parents to protect them and to keep them from harm.
I have had two children experience this at different ages. I did not act soon enough or forcefully enough because I felt intimidated by the system and the school, and I was too slow to realise the extent of their suffering. They both suffer from long term mental health issues as a result. So while some of you may find my rhetoric inflammatory and “over the top”, I hope that others will heed a warning and save if only one young person from that kind of pain. And if you are a teacher able to do this, you win yourself a lifetime’s supply of brownie points!!!
Can’t, not Won’t.
These little polls give me an idea of who we are in my corner of the bloggy world. I’m hoping they will also shape who and how I write. I don’t want to overwhelm, which is why the answers are quite brief, but please please start a conversation in the comments.
How do you help your child in the mornings?
Does your child explode or cry when they get home from school?
If you have withdrawn your child from school, how are you all getting on now?
If you are a teacher… does this post speak to you? How do you help children such as these? What would you like to see change in order to help you do your job?
September is here, and news abounds of returns to school. My Facebook feed is alive with parental anxiety about uniforms not arrived, of queues at the shoe shop, of images of school bags and lunchboxes. Because I have a somewhat unusual group of FB friends, only about one in twenty of these posts is a happy one.
Most of the parents and children I know dread this time of year. Anxiety of a different kind lives here. Anxiety due to unmet additional needs that cause “school refusal” (another post to come on that subject alone!). Anxiety caused by trauma, sometimes from early childhood, sadly all too frequently from school itself. For families affected by these issues, school mornings are horrendous. We watch our children suffer – these are not tired teenagers who need to go to bed earlier. These are traumatised, deeply distressed people whom we are forcing into an environment that will exacerbate their anxiety. We force them into that environment because we parents are forced to do so by the school, the authorities. It is truly unbearable, and eventually it breaks our children, and it breaks us.
This year for me is different. This year, only the child who is happy in school is going. This is not actually a new situation, but it is the first time we are beginning the school year in this way… and the relief is palpable. We are smiling at the thought of learning. We are smiling at the thought that days when depression, anxiety or trauma take over, we will simply let them pass.
My amazing daughter spent four years at a very special school. I thought very highly of the school and I still believe that the staff were caring and did their best. It appears, however, that Darling Girl was putting on a brave front but finding it impossible to be heard. The last year was tough.
She managed to sit one GCSE, a year early as a practice run, and she got to the end of the school year. She was not in a good state, and she was far iller than I realised. Last September was our worst one yet. She was so desperately tired and anxiety was peaking before term even started. Yet she tried. She put everything she had into going to school, going to class, listening to the constant caution from teachers about the importance of year 11 and those GCSEs.
She lasted 6 weeks.
Then she broke.
We were asked to collect her from school as they could no longer keep her safe. Whether I go into detail or not will depend on her, and on me. Reliving that kind of trauma is hard and there needs to be a good reason for doing so. For today, I simply need to contextualise where we find ourselves today.
My daughter was once again failed by CAMHS, who told her that other young people were iller than she was – they had actually attempted suicide, rather than threaten it (which to my ears rather sounds like encouragement…). They told her she was well enough for school. They told her that she had no diagnosable mental health condition. This in spite of her articulate explanation of how terribly unwell she was and how she was no longer coping with anything (including sleeping, eating, hygiene etc).
Fortunately, we were able to fund a private psychiatrist. She was diagnosed with mixed anxiety and depressive disorder with period of elation and dissociation. He did not dismiss PTSD, but the complexity of that illness made diagnosis unwise at that point.
She has not been back to school. School puts her at risk.
It took a lot of work, but we now have a plan that is written into her EHCP (Education, Health and Care Plan). The local authority have agreed that she cannot attend school and must be Educated Other Than At School, and they have agreed to fund this via a Personal Budget (PB). This means that I plan her education, I arrange for it to be delivered in a way that she can access, and they fund it. That also means that I must produce accounts, copy receipts, justify spending etc… It is by no means an easy option.
Dependent on interest here, I am happy to share more details of that process, and the type of education that we have been able to agree, but it may be a little too boring and specific for my little audience here! Let me know in the comments if this is something that interests you!!
We spent the last 8 months or so learning how to live again. Therapy is central to her recovery, and our week revolves around that. We went pottery painting weekly! Through that, she learnt to get up, get dressed and leave the house. It became absolutely clear that creativity is key to progress, and this was just right. Slowly, we added some art, and some drama. I must plan a post later regarding social farming because that was another revelation.
Since November 2017, my beautiful, highly intelligent, sixteen year old daughter has done no academic work. And it has absolutely been the best, the only decision. So she, unlike all her peers, has no GCSEs to her name. And after all that panic during the previous two years, we have realised that life goes on. The sky did not fall on our heads, and her future has not been blighted. The anxiety and panic that we were made to feel was really all for nought.
She continues to be very ill. But she has made some amazing friends in the home educating community and has many, many good moments.
Next week, we begin anew. We are keeping therapy and art at the centre of her life, but maths, English, history, science and French are joining the timetable. And we are to have a timetable! We considered complete flexibility, but she has told me that she would like some structure. We will take things one week, one day at a time.
Because the only thing that truly matters is that she is as well as she can be, that she is happy and that she is emotionally able. Until that happens, any other learning is simply impossible. But if she is mentally and emotionally well, she has the capacity to forge her own path and make of her life what she wishes for it.
So to all of you about to head into a new school year, I wish you luck. I hope yours is the happy kind of anxiety, and if not I hope you have access to some good support.
If your child is struggling with school, there are some amazing support groups on Facebook. A particular favourite of mine is “Not Fine in School…”
I have also explored the myriad Home Education groups and found a great deal of support and solace there. Home education is not an easy option, and is certainly not for everyone. I firmly believe no parent should be forced into it. But I also think that if you are strongly considering it because your child is deeply unhappy, it is probably worth a shot. It is certainly worth exploration. (Don’t just take my word for it and jump in – I don’t know you, and it may be the worst decision in the world for you!!!!!)
I know I have been away for a long time, and my audience probably numbers about 0.5, but I am interested in you too! How about a little poll so that I can see who you are?
I expect it is clear from what I have written. I and my lovely Girl are both so excited that she is not at school this year! We can’t wait to learn, to plan and to see what lies ahead!
Special schools are not mere parking places for children who do not fit the mould our educational system seeks to fill.
In fact, language is changing a little. Five years ago, we spoke of special schools. Now, they are known as specialist schools. It’s a tiny change, and then again it’s huge. As words do, the word “special” has become derogatory, and needs updating somewhat. So our children are now more and more referred to as having additional needs rather than special needs. As much as we may resent it, semantics are often more important than we would like.
My son has been in a specialist school for several years now. His teachers, care staff and us as his parents have worked solidly as a team to help him grow and develop. The system has no way of measuring the kinds of progress he was making in all the time that he was refusing to attend classes. So it came as only a slight surprise that Authorities paused before agreeing to fund a similar placement for his post-16 education…
Our young man, however, has been given the time, space and support to grow; to develop his emotional brain without which any learning is simply not possible; to develop life skills that allow him to manage the simple day to day aspects of life that just do not come to him instinctively; to become independent in a way that boosts his self-esteem and gives him the ability to move forward. For the last few years, simply getting out of bed has been a huge challenge for him. He has had to manage some emotional upheavals that have left him bereft and apprehensive at the thought of forming new friendships. He has been hemmed into a national curriculum that did not have the flexibility to allow for that growth, but he was surrounded by teachers who were able to bend things enough to allow him to survive.
Against all odds, he sat four exams at GCSE and passed three… a remarkable achievement given his mental health and his struggles with autism.
In September, he made a fresh start at a new college. No younger, annoying kids. No school grounds – his house is an ordinary suburbian house, a mile away from the teaching building. No uniform. No one-size-fits-all timetable. No adults dictating what he can and should not do. The independence and freedom afforded to him and his peers terrify the Authorities… after all, these are vulnerable young people.
Yet…
My son responds best to those who treat him as an equal, as a human being in full rather than a child who must conform “just because”. And he has found himself surrounded by adults who do just that – they consider him a young adult, and listen to him. In a subtle, gentle way that comes from years of experience, they are able to encourage and guide him with huge respect.
He has been there four weeks. He is happy – happier than I have EVER known him. He is attending classes at least three days a week – an improvement that no one could have predicted. He has made a group of acquaintances with whom he is spending time socialising. He is engaging with his teacher and with the adults on house.
This is success beyond measure. It is likely that there will be hiccups along the way… but we are absolutely on the right path to a young man who will be ready to step into the world as an independent young adult in a few years.
What makes this work is the relationship that we carve with his teachers, the care staff. We speak at least once a week, we email progress reports, concerns, celebrations. We listen to him… We hear what he has to say and we adjust our expectations, our hopes, our demands accordingly.
So a specialist school is not a parking place. It is a school, or college whose physical environment has been carefully considered with its cohort of young people’s needs in mind. It is a community of teachers and adults who have huge collective experience of a certain group of young people but who, more than anything else, understand that every single one of their students is an individual who must be treated as such. And it is a community that understands that success can only come when the young person is placed firmly at the centre, and surrounded by a team of parents, educators and carers.
When you bring all those factors together, amazing things can happen. I’ve been fortunate enough to find the right specialist school for each of my three children. I’ve worked hard to help the Authorities see why those schools would lead to the best outcome for them. I’ve worked continuously and very hard to ensure that those placements worked as well as they could. My job as a parent of very special children does not stop when they are at school… but with that collaboration..?
With that collaboration come hope, joy, progress. And every now and again, success.
After all the battles, worries, stresses of helping three children navigate early childhood in spite of various disabilities; of clamouring at the doors of agencies whose role is to help support such children, but who are understandably all too aware of their budgets; of maintaining some kind of family “normal” and endeavouring to seek out little pockets of fun and Happy…
After all that, here we are:
All three children are Safe.
All three children are in an environment utterly suited to allow them to Thrive.
All is well.
[Just to be sure… the difficulties and needs have not vanished. They remain, and cause hiccups weekly, daily, sometimes hourly. But the external source of constant anxiety has gone, and we are experiencing something close to normal family life for the first time.]
One of the aspects of my character that has been most tested in the last decade is Trust. I am by nature an extremely trusting person, and also fiercely loyal. Once you have earned my trust, I will be utterly loyal to you even in the face of apparent difficulties and even betrayal. This has seen me bitten, and I have no idea whether it is a positive or negative aspect of my personality… it simply is.
So in this spirit, when the first raft of professionals entered my life, I trusted them. Each and every one had my Trust as a starting point. I’ve often been told that was and is naive. It is beyond my control, it simply is.
It will come as no surprise to any parent of special children that I have been battered as a result. A few months ago I sat in the paediatrician’s office in tears, telling her that I had become cynical and jaded, and that this above all else was breaking me.
I do think on the whole that I have retained my ability to Trust, but every now and again, I question myself. For someone as riddled with self doubt as I am, this is frankly exhausting.
A Child is struggling (no surprises!). From the outside, it would appear that school are doing very little, and showing very little concern for his abandonment of any pretence at learning.
I Trust. Everything in my being tells me that they care about that Child, and I know they have the experience to deal with him, so I Trust.
Until a day comes, as it did today, when self doubt enters the mix of legitimate anxiety and “special” management of the Child. Self doubt tells me that maybe I should be doing more. Self doubt asks me if school is doing what they should. Self doubt tells me that school have not been in touch for a few days, that I have not seen paperwork and plans. Self doubt tells me that I am a Fool to Trust.
And in voicing such doubts to friends, I am met with legitimate, understandable questions: maybe school should be doing this, and that and the other. After all, the Child must learn to do what is required etc…
Self doubt grows in strength, bringing with it its groupies, Panic, Anxiety and Tears.
Luckily, I know this pattern. I live with self doubt in uneasy truce, but I know his ways and I am ready.
I called the school.
And a simple fifteen minute conversation confirmed that Trust was right. That all the measures fed by years and years of experience are in place. That the Child is not Lost, that he is Cared for, Supported even though he may not like it, or realise it.
The call was a good one to make. I was able to speak of my need to feel a part of the Team again, and school agreed that they could help me with that. I allowed Trust to win, and I allowed school to reassure Me… to tell me that what I am doing (or not doing) is allowing them to best help the Child. That there are no magic wands, but that slowly and steadily we are on the right track.
This… this is what I have striven for.
Not the eradication of disabilities, of differences, of difficulties.
Merely the right support and knowledge to allow my family to experience life in as normal a way as can be (warts and all), and allow my children to thrive.
And I am deeply, deeply grateful to live in a country where that is possible. As difficult as it may be to access this help, at least it exists.
I call you on the brink of despair, begging, sobbing at times; or shaking with an anger so fierce you must recoil.
I ask for things I tell you my children are entitled to, and the passion that fills my voice, the knowledge that comes from hours of research, the tenacity that fills your inbox leads you to only one conclusion: I am asking for the world. Or at the very least, a sizeable chunk of the budget you are held responsible for. I ask for my Dream…
And suddenly I am struck with a thought… You must believe my Dream is the dream of a spoiled child with no sense of reality… You must believe I am demanding. A scrounger maybe. Out for something every parent wants, that exists only for the elite few with the funds to provide it. You have told me often enough that “the law allows for every child to have an education appropriate to his needs, Mrs S. That does not mean a Rolls Royce education”. Because as much as we would all want that, a state funded education cannot be a Rolls Royce education unless we are all willing to pay substantially higher taxes.
I have always been struck dumb by this statement. And it came to me today that the problem comes from a staggering disparity between what my expectations are, and what you fear them to be. (My expectations are surprisingly common amongst my friends and all the other “Special Parents” I have had the fortune to meet.)
Welcome to my world, my family. Welcome to my children, my aspirations and my expectations. Welcome to my Dream.
Let’s begin with a little boy, aged 6 a while ago, recently diagnosed with Aspeger’s syndrome. I want my little boy to experience more than one day every few weeks during which he does not feel so desperate, so afraid, so lost that he begs me to kill him. I know that his intellect is astounding, that a “normal” parent would be wishing for that private education that offers small classes, top of the range equipment, exam tuition. That normal parent would be expecting great things, scholarships, university and the sky.
Let me tell you of my aspirations for that Boy, and my expectations.
I hope that he finds some inner peace. I hope that he finds himself able to pursue an activity that gives him a sense of satisfaction. I hope that he is able to live independently.
I expect that he will attend a school staffed with people who understand the complexities of his “condition”. I expect that he will be emotionally and physically safe primarily, and that he will have access to academic education that will allow him (if he allows himself) to learn and progress intellectually. That. Is. It. The sum total of my expectations.
Secondly, we’ll find a little girl. Emotionally so vulnerable due to her childhood circumstance on top of Asperger’s syndrome that she spent the entirety of her junior schooling (aged 7 – 11) in a state of almost constant panic. Once again, exceedingly bright and able, willing to please and to learn. The “normal” parent has her education all planned out: tutoring and scholarships, early exams no doubt. Extra-curricular activities include gymnastics (she was chosen for an exclusive group due to talent), swimming, music. Her all round ability stuns that normal parent so much that the sky itself cannot limit her.
So here are my hopes and dreams, my aspirations for this amazing Girl:
I hope that she learns to tolerate the world. I hope that she allows herself to be loved. I hope that she finds a little corner of the world to call her own, and something to do that will give her a sense of accomplishment.
I expect that she will be able to go to school and be emotionally and mentally safe. I expect that she will not be in “fight or flight” mode every single day of her school life. I expect that her particular brand of autism will be understood and that her teachers will know to give her time to express herself. I expect that the educational system will allow for her to take some exams early, and some late to allow the time and space she will need to achieve. That will do… very nicely.
And then lastly, we have the Little Man. He has a range of medical problems, some moderate learning difficulty and his social isolation caused by being different has made him very fragile emotionally. My “normal” couterpart would have seen this little boy in all the drama clubs, sports groups (I’m removing the physical complications here), parties galore. He is the clown of the group, loved by all and entertainer extraodinaire. I’m out… this little boy’s history is such that a future was never dreamed of, and so every day, every year is a rather miraculous bonus.
But here we go… here are my dreams for him:
I hope that he is well enough to live, and enjoy living. I hope that he is well enough one day to live independently. I hope that he will have friends.
I expect that when I send him to school in the morning, I can be sure that any medical emergency will see him as safe as possible. I expect that he will be looked after by the adults at school, and that he not be the expert in his own medical care. I expect that his schooling take into account his physical problems. I expect that the staff at his school be in regular contact with me so that we can ensure his long term health. I expect him to have “peers” at school… a group, however small, of children with whom he has enough in common to forge relationships.
I do not believe that I have described Rolls Royce education in the way you describe. I believe that I have describe some basic conditions that we often colloquially refer to as human rights. I believe that I have asked that each of my children:
Be physically safe while at school
Be emotionally safe while at school
Be able to learn within his or her intellectual, physical and emotional ability
Do not be afraid of my passion, my despair, my anger. They stem from my heartache at seeing children flounder much as fish do out of water. They stem from my feeling that as loud as I shout, as deep a river I fill with my tears, as much knowledge and evidence I provide you with, you do not hear, you do not care, you do not acknowledge. They stem from the knowledge that as simple as my Dream may be, it seems as far from me as Fantasy.
Please show me that my feeling is wrong. Show me that you hear, show me that you care, show me that you have read that evidence, that you acknowledge that I know many things about these particular children that you cannot because you have not lived with them.
My expectations are not those you fear…
My dreams are far, far simpler than you may think…
Please… be my Dream Catcher and let us, together, make those Dreams a Reality…
You work in a department whose whole purpose is to deal with us… the problems.
Your boss no doubt often reminds you that you are working with a limited budget – as we all are, and then you pick up the phone, or open your email, and there WE are… there I am.
Telling you that you must address my concerns. Reminding you that our country gives rights to my children and that you are charged with ensuring those rights are met. Begging you to listen, to help because I am at breaking point… again.
And you work in an office where everyone is in the same situation. You are all dealing, day in, day out, with a problem: children who cannot get through childhood without a great deal of extra help.
I like to think that you arrived in this office glowing with hope and ambition to make the world a better place. You might even have known a child like one of mine, you might have seen the difference a good decision can make, or the destruction a wrong decision wreaks. I like to think that you come to work each day hoping to make a family like mine breathe just a little easier.
But day after day, you come to work and you deal with the problems. And there are simply too many of us, aren’t there? That limited budget combined with systems and processes old as time forces you and I to be on different and opposing teams. I have become the person who will steal some of that tiny budget you have, and you have come to think you must protect that budget at all costs. You have become the next hurdle in my quest to help my child be safe and grow.
I’ve been thinking that you see too little success, because you do not truly understand the nature of failure and success for children and families such as mine. How hard it must be to go into work each day, be ground down from above and pulled down from below, and in the end feel that any difference you can make is insignificant.
Let me tell you the picture I hope for…
In my picture, we talk, you and I, as equals. We put my child’s photograph on the table, and we talk about the achievements I have seen that week, that month, that year. We can do that, because we both know the problems he or she faces, and we both acknowledge them. If there are no achievements to talk about, that right there tells us that there is something we must change.
In my picture, you listen to me because I am an expert. I have raised this child since he or she was born, and I have navigated the challenges he or she faces from the beginning. In my desperation and heartbreak, I have learned to research, to ask questions, to learn and learn, and learn again. I have learned the facts, but I have also learned to communicate them to you, to doctors, to teachers, to social workers. I am an expert because I am my child’s voice. I am an expert because I am emotionally invested. I am fiercely protective of this child because he or she is far more vulnerable than others of his or her age. I am fiercely protective of him or her because without that fierce protection, he or she cannot survive. And in my picture, you know that this fierce protection is far from a problem… it is a strength, and it makes me your best partner. Because I am an expert, you know that if I am anxious, there is cause and so you listen.
In my picture, I listen to you when you talk about budget. Because in my picture, you teach me how much each service costs. You tell me what each pound will buy, and you tell me what money you have available. And in my picture we whittle down what is needed and what money is available and we find a solution. Remember, I work with a budget every day… I do not work because I cannot work… because my children’s needs are such that it is impossible. So I know what a budget is, and I know all too well that you also have a budget.
In my picture we talk about the big picture… how will our decisions impact on this child’s life as a whole? If we can agree to “x” help for five years, will this child be able to live independently? If so, this saves untold amounts of money in benefits and care for a whole life. And for some of these children, the reality is that their contributions to our economy and tax system will allow you to care for those children who will need life long care…
In my picture, you listen to me because you know that my drive to find the right solution is greater than yours- that means I do your homework!!!
I know I am your problem. And I know that there are many of us, and that your work must seem like an insurmountable mountain. But I believe strongly that if we listen to each other, if we talk…we can work together, with respect and kindness, and find the way to help these children in such a way that they cease being simply a problem.
I call you on the brink of despair, begging, sobbing at times; or shaking with an anger so fierce you must recoil.
Simple Tangles 