What to Ask when Attending Meetings about Your Kids!

I've cobbled together a little checklist of things to ask in meetings about your kids, whether IEP reviews, medical reviews, statement or EHCP reviews, etc...

First of all, attending any meeting for and about our child is enormously stressful. It can provoke huge anxiety, frustration or anger for us - all the big emotions.

Prior to the meeting spend sometime thinking about what you wish to achieve for your child. You are their representative, their advocate and their cheerleader. There are 168 hours in a week. Your child might spend 30 of them at school. The remaining 138 hours are spent with you. No one else in the meeting, regardless of qualification, knows your child better than you do! You are the expert. Your specialist subject is your child.

Never be afraid to attend a meeting with a notebook. Take notes, write down your questions, ask for clarification if something is unclear. When we're stressed we forget stuff. If you require assistive technology ask to record the meeting. This should be well withinn 'reasonable adjustment'.

If your child is unable to attend the meeting, seek their views beforehand and share them. My top tip! If your child is unable to attend, let's face it they might not want to, take a photo of them and introduce them. There might be professionals present who have never met your child and would be unable to pick them out in a line up.

It is really important to manage your emotions during the meeting by remembering to breathe and taking sips of water. You can fall apart after the meeting.

If you can take someone with you. At the time of writing all meetings are online but you still might want to have a trusted friend with you for moral support.

You are likely to be faced with a bunch of people, some of whom might have baffling or intimidating job titles. Try not to feel intimidated. They are just people.

Although accessing services and support for our young people can feel like an endless fight, it is unlikely that our 'fight' is with the people present in this meeting. Our fight is likelier to be systemic, challenging policies and procedures. The professionals in the meeting may share your frustrations.

With this in mind try to make sure that your language remains focussed on the needs of your child at all times. When we verbally attack people, they become defensive and disengage. We've lost them and the meeting has gone off track.

You should all be on the same team - team 'your child'. There should be no one present who does not want to achieve a good outcome for your child. If professionals become distracted by concerns about budgets, who will pay for it, whose responsibility is it, etc... Politely remind them those details are not your child's concern.

Helpful phrases are:

Can you help me to understand the reasoning behind x, y or z decision?
Can you explain for me the purpose of this strategy?
Can you tell me how x, y or z will support my child's need?
What will that look like for my child?
What will that mean for my child?
How will outcome x, y or z be measured?
What will the timescale be for x, y or z?
How will we know that x, y or z is working for my child?
Who is responsible for monitoring x, y or z?
How will x, y or z be communicated?

If you find you're being shut down or suggestions are being dismissed:

What's the barrier to that?
What are the challenges in providing this?
How can we move this forward for my child?
Can we as parents support with this?
What support options are available?
What is available elsewhere?
What hasn't been tried yet?
What has been successful in similar situations?

'Please keep us informed because we like to ensure that we support our child at home', is another helpful phrase.

I'm sure there will be a million more, and better, questions you can think of.

Stay focussed, stay calm, be your child's cheerleader and don't be afraid to ask for an issue to go higher. If it is not possible to achieve acceptable outcomes, by all means, be cross, be frustrated but be polite. It is seldom within the power of members of staff who attend meetings to change policy and systems. If policy and systems are the issue, explore taking it higher.

Wishing you the very best of luck. Be brave. Our kids are brave. We role model for our kids how to problem solve, how to negotiate and how to be successful advocates. One day they might even be doing this for themselves. xx

Why are SEN parents tired ALL THE TIME?

If you have the enormous privilege to call yourself someone’s parent you might look back with fondness at the crushing exhaustion of caring for a newborn who does not sleep. You might harbour a small amount of nostalgia for the endless nappy changes. Maybe you miss the days when simply leaving the house required the planning and precision of a military operation.

The reason you get to look back on these phases is precisely that. They were, typical developmental, phases.

If your child’s development is not typical these might not be phases. These might be forever. Your child’s developmental milestones like sleeping through the night, toileting independently, feeding themselves, walking and the rest might be delayed...sometimes indefinitely.

If the world of SEN is blissfully unfamiliar to you, do you feel tired yet?

Think about your toddler having a strop. A perfectly ordinary expression of frustration. Maybe they throw a toy at you. Maybe they hit or kick you. Maybe they bite you or pull your hair.

Now imagine your child is 13 years old or 15 years old or 20 years old and developmentally they are still here. Still doing this. They’re big. It hurts. Sometimes you don’t feel safe. And you feel bad. You love your child. Your child loves you.

Are you tired yet?

My personal experience of getting battered by a child who was big enough to hurt me was that during that lonnnnng period I never didn’t love them. But I did find it hard to like them. And I would notice myself tense waiting for the next kick off.

What if your child is never able to feed themselves independently? What if your child has a medical need that regularly requires an ambulance?

Are you tired yet?

When friends or family members tell you how hard your life is do not allow this to distract you from what you need to do, When they say, ‘I don’t know how you do it’ they’re actually saying, ‘I don’t know how I’d do it’. And it scares them. Now here’s the good bit. They don’t need to know how you do it because you are the one doing it. Not them.

I call this wonky empathy. It can feel back handed, empty, unhelpful. Personally, if you can’t imagine ‘how I do it’, it’s okay. I don’t mind.

If you want to be helpful, if you want to show you care make an SEN parent a coffee.

Do you remember when your child was tiny and it felt like you never got to drink a hot drink while it was still hot. Yes. That. That might be forever too.

Occasionally, you might see an SEN parent out in the wild, maybe in a supermarket or a park. If they look like they’re having a hard time try not to point or stare. Try not to roll your eyes or tut and try not to offer terrible - or any(!) advice or judgement about their parenting or about their kid.

No not speculate about their child’s diagnosis. It doesn’t matter. Just know that it’s hard.

Maybe just ask them if they’re okay. Ask them if there is anything you can do to help. Then, simply, respect their answer.

I am making the world of SEN sound joyless. It’s not. The world of SEN is awesome, joyful, hilarious, loving, compassionate, supportive.

But some days we are just so damn tired.

If you haven't already, look at the blog on Chronic Sorrow for a peep at the emotional world of the SEN parent.

***As ever, all views are my own. You are allowed to have a different view.

Chronic Sorrow

As the title would suggest, chronic - persists for a long time, and sorrow is self explanatory.

Chronic Sorrow is a response to grief, loss or bereavement. This includes situations where no one actually died.

Our sorrow might be for a situation. For example, our loved and wanted child is not the child we expected they would be. They have learning, behavioural or medical complexity. Maybe they have all of those things with bells on. We do not love our child less. But maybe we love ourselves less. Maybe we feel that we failed somehow. That if we just tried harder, if we were just better people, if we could just control things that are out of our control we could fix it. We could fix them.

Maybe, we never got to be biological parents. Maybe we are mourning this loss. The loss of the type of family we thought we would have. Maybe we thought that by fostering or adopting a vulnerable human being we would achieve our dream, that we would have our need to nurture, to love and to be loved back fulfilled. Maybe our dream got smashed into a gazzillion pieces when we invited a vulnerable human being who has ptsd into our home and our heart. It's okay. You're allowed to feel sad. It is sad.

What Therapeutic Support can achieve:

Therapeutic Support can enable and empower us to achieve understanding and acceptance of ourselves for who we are, how we are and why we are how we are. This is the foundation for healing from experiences that have hurt us or caused us pain. The pain and hurt we experience is not our fault. We do not choose pain.

Ah, but what if we do 'choose' pain? What if we invite pain into our lives through self sabotaging behaviours. We will look at 'self sabotage' in a separate blog but for now, trust me on this, we do not 'choose' self sabotage.

What Therapeutic Support cannot achieve:

Therapeutic Support cannot erase pain. Neither can it erase hurt, damaging experiences nor can it change neurology.

Therapeutic Support cannot change the past. It provides us with the tools to make sense of the past, to accept ourselves in the present and to consider the future as a neutral passing of time absent of fear.

Therapeutic Support cannot be imposed against our will. We must be an active traveller in our healing journey. We cannot be a passive passenger.

We heal when we are ready to and in our own space and time. To accept ourselves we must accept all the things that make us 'us'. This includes the painful stuff that we like to keep locked away. A healing journey is not for the faint hearted. If you're not ready yet it's okay. It's okay to accept your own boundaries.

Let's be kind to ourselves. We're all doing the best we can with the resources available to us in any given moment. xx

Fostering. What’s it really like?

***I cannot stress enough that these views are entirely and only my own and are based on my own personal experiences and reflections. Therefore, you do not need to agree with me.***

Wouldn’t we all like to do good in the world? Wouldn’t we all like to make a difference for a vulnerable child?

But what is it really like?

Well, first and quite rightly, you have the world’s longest job interview. The assessment process can take 6 - 9 months. A Form F assessment is carried out by an assessing social worker. They practically move into your house and ask you to reflect on your every fart and sneeze. Since birth. And how these have impacted on you. Not really. But you are asked to reflect on pretty much every aspect of your childhood experiences, school, family life, relationships, teenage years, adult relationships. Literally, no stone is left unturned. And rightly so. If you are going to invite a young person who has PTSD to live in your house it’s going to be useful to understand your own triggers.

When your little, or big, bundle of joy joins you your legal status in relation to your charge is frankly baffling and more than a little dysfunctional.

Let me explain. So, when a young person enters the ‘care’ system their Local Authority becomes their ‘Corporate Parent’ a description utterly devoid of warmth. The Local Authority has legal PR - Parental Responsibility. The Local Authority then outsources their parenting responsibility to you, the foster carer. Possibly via an IFA - Independent Fostering Agency.

I used to work as a teacher with responsibility for SEN and Child Protection. I used to sit in Looked After Child Reviews and other such meetings. My contributions would usually be met with respect by other professionals around the table. The first time I attended one such meeting in my new role of foster carer I was perplexed to realise I had relinquished my previous powers and had become the village idiot. Legally, foster carers are invisible and absolutely should not go around having views or opinions about the needs of a child who lives in their home.

So, just to clarify:

Young person is at school 30 hours per week - School status, Expert.

Local Authority Social Worker sees young person for approximately 1 hour every 6 weeks - LASW status, Expert

Independent Reviewing Officer sees the young person for approximately 1 hour every 12 weeks - IRO status, Expert

Foster carer spends the remaining 138 hours per week with the young person - FC status, Village Idiot

Know your place foster carers!

Now, I do not believe that professionals enter into public sector roles in order to not do their jobs properly. I genuinely believe that professionals who work with society’s most vulnerable enter into their careers with the very best of intentions.

Here is my enthralling observation on vulnerability: society's most vulnerable young people are cared for by foster carers who work under very vulnerable conditions - less than minimum wage, you cannot be sick, go on holiday, pay into a work pension scheme or join a union. Foster carers' work is supervised by social workers who often work on temporary contracts with enormous case loads, high levels of stress, high levels of sickness absence, burn out and high turn over of staff. And on it goes. So, in short, the vulnerable support the vulnerable to care for the vulnerable.

However. The reality is that the vulnerable tend not to vote. And children definitely do not vote. Savage cuts can be made to services without political parties losing a single vote.

So, literally the expectation for children in our care is the absolute minimum. Situations and scenarios that would be unthinkable for my birth daughter were apparently acceptable for my, then, foster son.

Is fostering a job?

Well, you do get paid. Given that the role is 24/7 your pay is likely to work out at around £1.50 per hour. I think it’s fair to say it’s a low status job commanding less than the minimum wage. Fortunately, it is unlikely that financial reward is your primary motivation.

Can you join a union?

No.

Are there opportunities for career progression?

No. Not really. But there should be interesting training opportunities.

I appreciate I’m painting a cynical picture, so why on earth did I become a foster carer?

Well, when I was teaching I was SENDCo and DCPO (designated child protection officer) and several of my students were removed from their birth families. They were removed from their families for reasons that made complete sense to me and they were loved. Yes, it was in a way that you and I might not recognise but still love. Dysfunctional but still love.

Too many of these young people were then placed in foster placements where they were not loved. Where they were barely tolerated. I do not want to assume that these foster carers are bad people. Rather, that due to lack of training they would take behaviours personally.

For example, when a young person steals from you it will likely trigger a highly emotive response. Behaviour (that causes pain to ourselves or others) is a communication of emotional distress. Your young person will have spent a number of years not knowing for certain that they will be fed. When they steal from you it is unlikely there is an intention to upset you. The young person must survive at all costs. If you get upset, so be it. It’s a small price to pay for survival.

At the heart of this is a lack of training for foster carers. It is a role that is undervalued. It is not regarded as skilled work. I also suspect that there is sometimes a lack of honesty about just how challenging fostering can be. I believe this is in part because unless social workers have also been foster carers themselves their experiences are theoretical and anecdotal, not lived at first hand. And if social workers were brutally honest about the challenges would any of us do it? The bottom line is these young people need to live somewhere!

Would I recommend fostering?

Absolutely!

BUT you will need your big girl/big boy pants, broad shoulders, thick skin, an excellent network (not big, just excellent) of friends or family who get it and do not offer terrible advice or judgements such as, ‘you’re too soft, that kid just needs a clout, in my day, yadda, yadda’.

Shop around. Where will you be best supported?

Up skill yourself. Attend heaps of training. Read billions of books. Listen to your young person. Really see them. What is their behaviour communicating? What ever it is it’s not about you.

Be brave. Give your young person a voice. If they don’t have a voice yet, if it’s just too hard for them, be their voice. Be their cheerleader.

Protect yourself from burning out. Manage your own expectations. Always aim high for your young person, Always have the highest expectations for them.

Don’t beat yourself up if you don’t manage to change the system. Changing the world one young person at a time is a great place to start.

The system is incredibly risk averse. The irony of this is that it places young people at risk. A different set of risks. A safer set of risks? The greatest risk is that our young people will have a very odd and dysfunctional experience of being parented. Yes. I know. Didn’t they get removed from dysfunction to a place of safety? Well yes. But the dysfunction we offer them is safer. It’s a sliding scale...

The legal position for young people in the UK, as I see it, is that they are property. Yes, you read that right. They are either the property of their parents or they are the property of the state. It wasn’t many generations ago in the UK that we put children up chimneys, down mines and had them working in factories.

So, the focus for Local Authorities in their role as corporate parent - a phrase that fills me with warmth and cosiness, is to keep these parcels safe from obvious harm - another sliding scale.

As mentioned earlier, Local Authorities for practical reasons outsource their corporate parenting responsibilities to foster carers who might be employed directly by the Local Authority or by an Independent Fostering Agency.

I would never wish to minimise the harmful experiences our young people have had nor would I ever wish to minimise the need for robust safeguarding arrangements for young people in our homes under fostering arrangement. However, this places our young people at risk of being parented literally at arms length. In real life how many of us bellow a bedtime story across the living room to our birth children? This is not real life. Be brave. Find a middle ground. These young people will be parents themselves one day.

If you are familiar with some of my other blogs you will know that we achieved permanency for our little man through SGO - special guardianship order. For reasons I will explore in a separate blog he ping ponged around the care system for nearly five years before he came to us. He was removed form his birth mum, who loves him, at four months old. I cannot fathom how he was not placed for adoption. Everyone wants a baby - that’s another blog too. Short version - his Local Authority is in special measures. He was exposed to very unsafe practice. I submitted a complaint and the social worker concerned no longer works in the service.

SGO is time bound. It takes twelve weeks. Our little man’s took fifty six weeks. I wrote to directors of services, MPs, the ombudsman, regulatory organisations.The scale of apathy was truly shocking.

The first thing our little man said when we told him he had his SGO was, ‘I can go in dad’s room now’. He was thrilled. In fostering, bedrooms are very much off limits. I get this. What I do not get is the idea that children are only harmed in bedrooms and never in living rooms, kitchens, etc... With a different hat on, as a volunteer for an organisation that supports survivors of rape and sexual abuse, data tells us that cars are extremely high risk locations for sexual abuse to take place but foster carers are not told to not drive young people places in their cars because this would be entirely impractical.

In conclusion, if you see an advert on the back of a bus asking if you have a spare room remember that if it’s easy money you’re after get a lodger not a young person who has PTSD.

If you are brave, gobby, hate injustice and like young people do it. You will get back infinitely more than you put in. It will change your life.

***I cannot stress enough that these views are entirely and only my own and are based on my own personal experiences and reflections. Therefore, you do not need to agree with me.*** Just in case you missed it earlier.

Compassion Fatigue. What is it?

Well, there are many synonyms: blocked care, vicarious trauma, secondary trauma, burn out...

You know when you are on a plane listening to the safety announcement and the flight attendant says, ‘if the oxygen masks drop down put yours on first before helping anyone else’ well, it’s that.

Essentially, none of us can continue to pour from an empty cup. Self care/self protection can feel self indulgent. However, if we do not care for ourselves how can we expect to care for others.

Please exercise caution when referring to wikipedia. However, on this occasion it seems pretty accurate.https://en.wikipedia.org/wiki/Compassion_fatigue

When we have responsibility for others and especially for those who are vulnerable, whether in our professional lives or in our personal lives, we too become vulnerable. We might find ourselves slipping to the back of the queue, repeatedly. ‘So and so has it far worse than us, how can we possibly justify doing x, y or z for ourselves’.

And here we have the cycle of vulnerability - the vulnerable caring for the vulnerable.

This isn’t an ideal situation in a professional setting. It is even more problematic in our homes.

Those of us with responsibility for caring for family members are at high risk here as are foster carers and adopters.Why? Because we sometimes go months on end without a day off, an unbroken night’s sleep or even five minutes to ourselves.

What does compassion fatigue look like?

Well, the wikipedia .entry pretty much covers it. It’s when we are so tired and find ourselves spread so thin that we don’t really recognise ourselves. Maybe we no longer have the time, energy or interest in activities, friends, stuff we used to enjoy and value.

In short, we are emotionally, mentally, physically exhausted - burnt out. We might find ourselves on a very short fuse. Over reacting or maybe under reacting - passive, unresponsive.

When we find ourselves feeling indifferent to the needs of others, overwhelmed, uncaring we must be really terrible people, right? Or exhausted, burnt out, people?

When compassion fatigue becomes truly toxic we might find ourselves neglecting or abusing those in our care.

Asking for support is, inevitably, stigmatising. We will fear being judged as weak or unable to cope. What if we take the super brave step of reaching out and asking for support only to find there is none available. Support is patchy at best. We do not meet the threshold. We are not yet in crisis enough.

If we possibly can, reach out to a friend or a family member who we trust. They needn’t be a professional they just need to make a decent coffee, tea is also acceptable, and they need to be able to listen without judging.

Shop around. There are some incredible organisations that are able to provide free or subsidised services, counselling, etc...GPs might be able to signpost to support. GPs might be able to grant the magic 6 sessions of counselling. None of it is ideal but might be a useful place to start. There are lots of communities on line. Social media always comes with a health warning but used wisely it can be a force for good.

It is vital to remember that we are human beings doing our best with the resources available to us. Lets try and show ourselves the same care we show to others. It isn’t selfish to care for ourselves and protect ourselves. We will be in a far better position to support and care for others if we can figure out how to care for ourselves too.