The power of Love and Dogs…

About eighteen months ago, Youngest was taken over by anxiety and confusion in addition to his fairly traumatic co-existence with the medical profession and some learning difficulties. This complex combination of factors led to something which is far more common and prevalent in the SEND world, but has to date been a source of deep shame and isolation for families like mine: SEND (special education needs and disabilities) VCB (violent and challenging behaviour.

When our children are overwhelmed or overcome by the world around them, their levels of anxiety rise to incomprehensible levels. At this point, their brain is programmed to do only one thing: run or fight. All the blood supply is redirected to the large muscles of the legs and arms, and two things shut down completely: the pre-frontal cortex, which allows you to think and communicate; and the digestion. Many people in this high state of anxiety will vomit precisely because of this shut down. More commonly, children who already have difficulties processing their surroundings got into “fight” mode. And they become violent, most often with those they love the most.

I suppose unsurprisingly, there is enormous judgement about this behaviour if spotted in public. However, it most frequently occurs behind closed doors, and parents are left desperate and convinced they are doing something wrong. Worse, if and when they talk about the situation, professionals point to their parenting skills, and add blame to the shame that both parent and child already feel about this.

I have experienced SEND VCB with all three of my children at one time or another. I can without exception point to a period of intense and overwhelming remorse for their actions once the storm had passed. And then the remorse and shame they felt caused such self-hatred that they would turn that violence inwards. I have to ask those professionals that may have advised me in the past, and those that advise families today: how does adding blame and guilt benefit anyone in this situation?

Slowly, there is a growing movement to raise awareness about this, especially within the NHS, thanks to my wonderful friend, Yvonne Newbold.

My experience has led me to change my parenting style quite dramatically, and many would disagree. I suppose the only thing I can point to is the calm and quiet in my house, the happy dynamics between three very different siblings, and the increasing empathy and willingness they have to help out.

• We do not limit screen time. At all.
• We do not impose any consequences or punishments for “bad behaviour”. And actually, since doing that, I can honestly say that they have NEVER behaved badly. We have had periods of deep anxiety and distress, but they do not lie, they are not rude, they do not cheat, they help out.
• We do not reward good behaviour either.
• We talk. A lot.

And we consider the children equal in value to the adults. Which means some difficult conversations at times… why should Mum and Dad watch TV in the sitting room at night rather than a child play on the PS4 (at the moment, because I say so… but there is scope and maybe need for more change and compromise).

For Youngest, we needed something additional, something that simply won’t be possible for many families. We needed a dog.

This was a huge decision for me. I am not a “dog” person, and I was well aware that all the work would be done by me. I thought about it for a long time, knowing absolutely that it would be hugely beneficial for him, but really concerned at the impact on me and the rest of the family. Girl loved the idea, Eldest hated it. Husband was not keen on the change and additional work.

I had looked into assistance dogs, but this clearly was impossible for all sorts of reasons. So I reasoned that if we got a puppy, we could train him or her to manage Youngest’s needs.

Serendipity stepped in, and we found ourselves meeting an amazing family who were expecting their first litter of labradors. Shadow was born on the 2nd of January, 2017, and we met him only days later. Then weekly until he was able to come home. Youngest was speechless with joy, which is no mean feat given his seemingly endless capacity for chitter chatter.

Puppy training has been hard work, and I am incredibly happy to see him grow up and settle down. I do find the relentlessness of dog walking and dog company tiring, but I also know that those walks have done me a lot of good, and it turns out that I can be (sort of) a dog person.

Because Shadow has changed our lives. Since coming home in March 2017, Shadow has been Youngest’s best friend. And Youngest has experienced only two meltdowns in all that time. Shadow comforts him when he is sad, provides a comfortable cushion when he is ill or exhausted, and his mere presence seems to be enough to avoid those levels of anxiety that trigger VCB.

If you are affected by SEND VCB.. as a parent, family member, sibling, professional, go and look around Yvonne’s site. There is crucially important information there that will change the way you work and live with our young people.

Mark Brown, of Special Help 4 Special Needs

I originally wrote this post in my very first blog,”The Goings-on of my little world” , in June 2009. Since then, Mark has continued affecting more and more families like mine in life-changing positive ways. He is no longer an NHS nurse, but works as an independent special needs advisor, and I am so proud to share that a new centre to help these families will soon be opened as part of his work. He continues to be my guardian angel, because that is who he is. Regardless that I am no longer officially on his books, he continues to see as as one of “his families”. His kindness, courage, wisdom and compassion know no bounds. He ceaselessly inspires and amazes me, and I have no way to truly convey my gratitude to how he helped our family.

The Special Help 4 Special Needs Centre will open on October 27th 2018  at 1pm. The address is 195 Godstone Road, Whyteleafe CR3 0EL.

If you are widely known on the internet and in the SEND community, please share this far and wide. If you have contacts in the local or national press, likewise. Let’s try and finally get Mark the recognition and support he so richly deserves.

Mark… thank you

When I was growing up, my parents told me I had a guardian angel. Always at my side, he was there to protect me in bad times, rejoice in good times. I have to say, he was always rather too silent for my taste, and it is possibly to my discredit that I never felt him at work.

And then earlier this year I met a real, solid, guardian angel. He does not have wings, and he will be the first to say that he does not really fit the “angelic” description. But he has been my guardian angel in the last few months more than I could ever have hoped or prayed for. He has laughed with me in good times, held my hand in bad times, and when I fell a great height into a pit of despair and hopelessness, he caught me. He refused to drop me, and made me believe that I could get up again, stand straight and continue to fight the battles that were coming my way.

My guardian angel’s name is Mark Brown.

Many people in the “disabled” community know him, either because he comes into their homes to help them help their children, or because they hear him talk at meetings. The sex education talk tickled many of us mothers whose children do not understand the world in a conventional manner – no space for innuendos and subtleties!!!

The outreach teachers from various special schools know him well, as do the consultants at Epsom hospital. The question on everyone’s lips at the end of his talks is “How can we get referred to you?”.

Mark is an unsung hero. I and my little horde are known as one of “his families”. He cares for us with passion and professionalism, and raises the nursing profession to its highest level.

To my shame, and no doubt that of others, I have been so caught up in the difficulties of life that I have taken his help for granted these past few months. And I fear that the families he helps are all caught up in troubling, emotional and exhausting lives that leave little time to shout across the hilltops, “This nurse is my life raft! He makes it possible to live.”

To a small thank you, Mark only replies, “It’s my job.”.

I want to shout in the street, in the offices of bureaucrats everywhere in the NHS and other public services:

“Look at this man. Look at the dedication he pours into his work every single day. Look at the difference he makes to so many lives today, tomorrow and for the rest of their lives. Watch him with a child who does not know how to communicate. See how he enters their world, at their own pace, taking the time to find the special language that will move them forward.

See the care with which he gently pulls a family together, finding the weak spots others have missed. See the smile on a sister’s face as she realises she too can have some help.

Hear his honesty. Listen to him speak to parents about the future, one they never wanted to face but which must be dealt with. Hear him list the options, tell the optimism within the suddenly restricted world these parents dread.

Call him on the phone. Hear him answer, his voice always calm, always caring. See him move, drive, arrive to help. Watch him knock and enter, calling out a bright, “Hello!”, bringing the sunshine of hope along with him.

See him watch, and listen and wait for the tears to stop. Then see him pick up the telephone, and talk and talk until the men and women behind their desks agree to give the help. See him make a cup of tea, calm an autistic child and return to Mum, waiting for the storm to pass a little.

Follow him one day, to catch a glimpse of what he does. Follow him two days, to see the families he helps. Follow him a week, and learn how much he counts.

Then ask: why did we not know him before? What can we do to help him? How can we recognise the value of this man, his work, his time?”

Mark Brown. In his own words, a nurse. His work is with children and adults with learning disabilities. He is absolutely a professional.

Mark Brown. In the words of many of “his families”, a guardian angel. His work is with our children, disabled but no less human, no less worthwhile. His commitment to our children extends to our families, because “what is a child without his family?”. And so his work is with us, through the tears and the laughter, the bad times and the good. He cares. He is absolutely a Nurse.

A brief look to the past and what has changed

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.

But for us as individuals, things are not the same. I wanted to share again this post, “You have so much more power than you realise” because it  resonates with me on many levels.

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?

Back to school?

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.

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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.

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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?

 

Carers:part of the family

When you care for someone with a disability, you may be entitled to some help, here in the UK. For the last 15 years, we have been fortunate to have that kind of help.

We have had “carers” come into the home to help look after one or other of the children. Two of them had this “entitlement”, and it took a bit of work to explain to the powers that be that real help would be had if the carer could on occasion look after all three, or at least the third one sometimes!

So we have welcomed people into our home and our lives for the greater part of our parenting journey.

Now, they are more often called “personal assistants” than “carer”. I don’t really like either term, and my growing Offspring hate them.

The reality is that true help only comes when that person becomes part of the family. When we have built a relationship of trust, of mutual understanding and of fun! We have had many people come and go over the years, and some have stayed with us for several years each… those have been the best and have a similar role in the children’s lives as aunts and uncles might have in more traditional families.

As they grow, the needs change. For the longest time, these lovely carers spent much of their time supporting me, and I needed them to be a kind of replacement mother for the system to work.

Now, they need a friend, a mate who will just make going out and being independent that little bit easier. That slightly older cousin that might have taken you on your first parent-free trip to London…

Finding someone like that in this situation is like finding gold dust! But we have!

Today was lovely. Listening to the beginning of a relationship, noticing the enjoyment of all parties and seeing some blossoming. Just lovely.

So here’s to all “carers” or “personal assistants”. You are hugely underpaid and undervalued. Know that in this house, you are precious treasure, and will always be considered family. Our door will forever be open to you.

A week in the life of a SEND mum

Last week was the final week of the summer holidays. All was well and we were prepared for the start of the new school year, as unconventional as that looks for us this time around. And then this happened:

Monday: unexpected day out with Girl and Youngest. Lovely, until an upset causes Youngest to lose the plot and fatigue triggers Girl’s difficulties. We  leave the gathering more sadly than we had hoped, but try and resurrect the day. We continue by train (despite everyone’s exhaustion) to Guildford for some essential Girl shopping. Lunch first though, for I am starving.

Oh my, the sensory overload of the food hall. The need to queue endlessly at McDonald’s because that is all Youngest can eat. The need to queue again for healthier food for the Girl and I for similar reasons. Both of them are visibly finding the environment exquisitely painful, but I know we all need to eat. We nearly abandon all hope and leave, but the thought of the train journey at this point keeps me going.

Shopping is achieved, including some Lego for a much needed family afternoon.

Train home… by the time we are home, everyone is on their knees and heading for Catatonia.

Actually, Monday was really successful 🙂

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Tuesday Part 1: Two hours spent helping another mother with her son’s needs and the EHCP process. Phone calls are made, nobody answers so I leave messages. Emails sent in the hopes of replies. As heartbreaking a story as it is, I am more heartbroken that it does not shock me. This story should be so unusual as to make headlines news locally

“Mother and Son with Special Needs Failed by Local Authority!”.

If it were, the local press would have that headline or a variant every single day. How are we allowing this to be the case? How are we allowing families to be left so utterly alone to manage a process that essentially requires a degree level education and UN level diplomacy to get through successfully? How have we arrived at a time when a family in such desperate need is afraid to talk to the authorities for fear of being threatened or intimidated.

I leave, hoping that I have clarified things a little, hoping that I may have made a tiny positive difference. But I also leave angry, and exhausted and drained and so, so sad.

Tuesday Part 2: Phone call from Youngest’s taxi driver to tell me that our local authority has just cancelled his contract… one week before the start of term. Ordinarily, the transport team quote a minimum of ten working days to put in place a new driver. Ordinarily, the new provider must call me and arrange a “meet and greet” so that my vulnerable child will not feel too anxious, and more importantly the driver will be made aware of that child’ needs. Needless to say, I experience an adrenaline surge at the thought of such uncertainty which could all too easily turn a great school year into a catastrophe. I am serious: the success of a SEND educational placement is very precarious and such small things as these can send the dominoes flying.

Several phone calls and emails later, the local authority has been made aware that this is unacceptable and that I expect the situation to be resolved.

I am “managed” and promised a phone call on Friday once the tender process is finished and we know the new provider. “It may be the same one, anyway, Mrs. S”. Fuming, I end the call and get a little more information by calling said, lovely, provider.  However, the tender process will run its course and there is nothing to be done until Thursday morning. I do email school letting them know of the problem.

Let’s remember here that the local authority so far has made no proactive move to inform me of any of this, in spite of their policy, live on the internet, to consult parents ahead of any change.

Phone down, computer away, I try to refocus my energies and seek the calm I felt yesterday… then the postman arrives.

Tuesday part 3: A letter from the same local authority, but this time social services. Threatening and intimidating. Telling me that I have made cash withdrawals without providing receipts, and far too many of them.

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Adrenaline surge number two. I check my online account (this is an account that allows me to pay for the carer that social services have assessed Youngest as needed). I have made no cash withdrawals (I knew that, they never got around to sending me the card, and I only do transfers anyway). Every payment request has been approved by them. Every payment request but one is accompanied by an uploaded copy of a receipt or invoice.

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But… threatening and intimidating letter and I just can’t call that number. So I call the social worker. Who only works Wednesday, Thursday and Friday.

Swallow the anxiety, slow the heart, there is nothing to be done. Anxiety and heart refuse to listen… they are not governed by the prefrontal cortex and basically tell it to go pluck a duck (or something to that effect).

Tuesday part 4: In preparation for a meeting tomorrow, I check Girl’s Education Budget Account as I will have invoices to pay shortly.

£0

No surprise, but more phone calls to make tomorrow. However, a few emails this evening to check if this is unique or whether families in similar circumstances are in the same boat. It seems that in our corner of our county, none of us have been paid yet.

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Wednesday part 1: Phone call (s) to try and ensure that Girl’s Education money will be paid in, and exactly what the authority wants from me in terms of accounts etc… I spoke to a lovely new case officer who has the dubious pleasure of now having to deal with me for two of the Offspring. We focused on one thing today, with the promise of raising the others later in the week.

(I chose not to follow up, because frankly, there is only so much I can handle in one week.)

A second phone call to Youngest’s social worker to explain that I could not call the finance team without knowing why they had sent me the threatening letter. I am human, and there are moments when I simply “can’t”. I’ve learned through the years that I really must heed that feeling if I am to stay standing. For more on that particular topic see here… So I handed that task over to her. She was lovely, as so many front line staff at this authority are, and said she would look into it, but “not to worry”.

[Ha!! I scoff in the face of such a phrase!!! Me?? Not worry? When faced with uncertainty? But the intention was good…]

Wednesday part 2: What a lovely afternoon! Girl conquered her panic at the new, and we went to meet her potential, and now definite, French tutor.

When determining her curriculum for the year, she had expressed a strong desire to rediscover her first language. She was also able to tell me that she cannot learn from me. I was so happy to find someone that neither of us knows (this was quite important for all sorts of reasons), who is French, and who teaches in a really practical way.

Marine runs the French Club and teaches through games, baking and other activities, tailored to the needs of the individual. She was completely lovely and Girl immediately started relaxing.  As fortune would have it, my phone rang at that moment with  yet another urgent message from the local authority so I was removed from the “meet and greet”. Marine quite brilliantly took the opportunity to start a simple card game in French with Girl!

We came away really happy and ready to start lessons shortly!

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Thursday part 1: Knowing that the taxi contract tendering process is happening that morning, I was rather on edge. I was not optimistic, but hope refuses to die, so when the phone rang from our lovely taxi company, I did not know how to feel… butterflies in the tummy, slight headache and queasiness.

They had lost the tender.

I told them that I would immediately call the local authority. This was not finished yet.

Rather than speak immediately to the assistant manager, I spoke to Youngest’s case officer. Again, a front line member of staff who is lovely, kind and understanding.

And who has no authority to make any decisions.

I had to get my grown-up voice on. My children often tease me, saying that I am “petticoating” the professionals. This is due to the fact that I favour full circle swing dresses in my daily life, and add a petticoat to the ensemble if I need to feel a little extra confidence. This happens when I go to meetings, but I have been known to don a petticoat if I have a particularly difficult phone call to make.

[Yes, you may laugh. Yes, it looks as ridiculous as it sounds. But it works for me!]

I left this lovely lady in no doubt as to the sincerity of my intent. I may well have mentioned the press.

And when I put the phone down, I had a little cry.

I hate being unkind. That lovely lady had nothing to do with any of these decisions. She had just come back to work from annual leave and was suddenly assailed with me petticoating her… based on my family’s reaction when they have heard these phone calls, I am not fun to be on the receiving end of!

I will put on my big girl pants and my petticoat and I will stand up for my children. As long and as often as I must. But I do not like it, and it is draining.

I was promised a phone call the following day, but once again there was talk of “managing my expectations”. This is a frequent phrase in my world and one which I am learning to hate. I explained that my expectations were that if I had not heard from the transport team by the 27th August, I expected to keep the same driver. This is far from unreasonable and I would not accept any other alternative.

Another rather restless night ensued.

Thursday part 2: Sometime interspersed with the taxi palaver, I received an email from Youngest’s social worker explaining that she had spoken to the finance team. Apparently the team have no concern whatsoever about my account, but others have been mis-spending and so they decided to send a letter to everyone!

I am still fuming about this. These are specific accounts which allow me to request a payment. I provide documentation to support my request and they then approve it (or not).  I’m still unsure given this system how it is possible to mis-spend.

But mostly…. I did exactly what they asked, and they chose to spend money sending me a letter that did not apply to me, but caused huge anxiety! Grrr…. they will be hearing from me next week!

At least that is one issue put to bed!

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Friday part 1: Email from Girl’s case officer explaining that money should be in my account within 2 weeks. Welcome news, though it will mean a few bills paid from savings in the meantime. What if, like many families, I did not have the savings to manage this gap? I wonder at their organisation often…

Friday part 2: I understand that people are busy… So I waited until 10am before calling the assistant manager about the famous taxi! She was not pleased.

There followed a surreal conversation where she told me she was unaware of any decisions. Yet she also told me she was sat next to Lovely Case Officer who surely must have told her about the tender decision. Roundabouts and excuses ensued to which I refused to listen. I simply asked her forthwith to call transport and fix the problem, for I would not be putting my son into a stranger’s car the following week. I will spare you the slightly gorier parts of the conversation.

Tick tock… at times, the clock moves far too slowly.

Twenty minutes later, the phone rang. “Youngest will be keeping the same driver”. Her tone implied that this was an inevitable conclusion and that I had made a mighty fuss over nothing. I thanked her profusely, several times, wished her a good day and weekend and heaved a sigh of relief.

The second I put down the telephone, it rang again: Tremendous Taxis was calling with a message:

“Good news! We jut got a call from the authority asking if we would do the route at the reduced price we bid. Of course we said yes!”

In the background, a lady I have come to know well at the firm shouted to me, “Well Done!!!!!”

I must conclude that without my calls, we would have been presented on Wednesday morning with an unknown car and driver. Not acceptable.

I have huge pleasure in announcing that our favourite taxi driver was on the doorstep at the allotted time, and that Youngest dove into the car with happy glee.

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Throughout the same week, we managed the ups and downs of anxiety and depression paired with autism for two young people. We managed Youngest’s new determination to eat enough orally to avoid the tube. We prepared Girl for a week in Wales. We did the normal family and household “stuff”.

And while “interesting”, this week was a little shockingly rather normal…

Consent. Small Word, Big, BIG topic

And we’re not talking about sex!

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
• start an apprenticeship or traineeship
• spend 20 hours or more a week working or volunteering, while in part-time education or training

source: www.gov.uk

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:

Work

Age 13

This is the youngest age you can get a part-time job. Unless you’re working in certain areas for example TV, modelling or theatre.

Age 16

You can get a full-time job. The NSPCC recommends this as a minimum age that you can work as a babysitter.

Find out more about getting a job.

source: childline.org.uk

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.

 

When “won’t” actually means “can’t”

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?

Specialist schools are more than parking places

photo by Robert Rickhoff

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.

 

Diagnosis Shock

I’m sitting here, reeling once again from the shock of diagnosis.

The strange thing is that this is actually not a new diagnosis, nor is it a serious one. In Little’s life, this is but a mere blip. Turns out, diagnosis shock is real, regardless of the seriousness of the dx…

And yet, having gone through the sadly typical journey of diagnosing him myself, getting righteously angry at the slip up, seeing the doctor and having a formal diagnosis and now a course of action, I’m now shaking and teary. Emotions are funny old things.

Having a child as complicated as Little means that more mundane childhood issues sink to the bottom of the pile. And the follow up visits with the paediatrician simply don’t address them.

Ten years ago, almost to the day he received a diagnosis of virally induced asthma. This was following a bad spell of croup which has left him in hospital – again.

We were given a preventative inhaler, with very minor instructions, and that was the end of that. No asthma action plan, no checking on inhaler technique, no reviews… in fact, it was as though the diagnosis was so minor as to be irrelevant.

Over the years, croup reared its head, we always ended up in hospital, ill for days, losing weight. I always mentioned the asthma, but it was never heard, and I didn’t push because it didn’t feel serious or even quite real.

This week, the boy has been coughing fit to burst. We haven’t slept for nights, he has hardly eaten a thing. We’ve seen doctors, had steroids, ended up in hospital (luckily not in-patient) and the cough just goes on and on, only stopping after using his salbutamol inhaler.

In desperation, I googled.

Guess what?? Asthma doesn’t always come in wheezy form! It can also be “just” coughing.

And Little fits the symptoms absolutely perfectly.

We are now in a protocol, in a system. We have a suitable gizmo for his inhaler, we have spare inhalers. We have an appointment with the asthma nurse, and will have an action plan and all the paraphernalia needed at school. In other words, we finally have a proper diagnosis that brings with it a plan of action.

I’m hugely relieved.

I’m also feeling dreadfully guilty that had I kept on top of this, we would no doubt have avoided countless hospital admissions, and that this week he would have been spared a lot of distress and pain.

There’s no one to blame, and everyone. This was picked up early, really well, but was never actioned!

We finally have a care coordinator at our main paeds hospital, whom we are due to meet next week. This is typical of the reasons we need a doctor pulling everything together. I may be on the ball, I may do a lot of research, but I am no replacement for a doctor with medical training and experience.

Now I’m off to make a cup of tea, allow myself a few tears to process all this then get to the laundry to have the house ready for the boarders to come home for their half term…