National Adoption Week: #ProvideAdoptionSupport

If you’re part of the UK adoption community, you can hardly have failed to notice that this week (16–22 October) is National Adoption Week. The powers that be have decided that an appropriate hashtag with which to publicise the week is #SupportAdoption. They’re encouraging people to use it and to join a Thunderclap (a type of Twitter campaign) to get it trending. I’m unclear about exactly what this hashtag achieves other than that it might cause people to say ‘Oh, Adoption, that’s nice’.

So I propose that adoptive parents respond with a hashtag of our own: #ProvideAdoptionSupport. An actual call to action that asks them to show they mean it.

Here’s why.

provide-adoption-support

More than PR

It’s easy to say that you support adoption, but it’s vital to provide adoption support. ‘#SupportAdoption’ is very easy to put on a bumper sticker or a pen to lure in unsuspecting prospective adopters, but proper thoughtful adoption support is what makes a real difference to adoptive families once you’ve signed on the dotted line and all the social workers have stopped their statutory visits. Done properly, it’s a real lifeline, especially when you’ve got real problems such as child-on-parent violence which can lead to the adoption breaking down.

Recruit new adopters with honesty about the challenges, not with cute photos and false promises. Click To Tweet

What does it mean to #ProvideAdoptionSupport?

It’s about more than family-finding using cute pictures of children all over TV shows and in the papers. Finding families is just the start.

It’s about remembering the whole family and making sure that the parents are equipped, resourced and supported and given the mental healthcare they need when they have secondary (or primary) trauma as a direct result of caring for their child.

It’s about respecting the people who are on the front line – parents. Adoption support is not just about children’s therapies, it’s about families. It’s not about being told, as we once were by a PASW, that ‘We don’t support parents – this is Children’s Services.’

It’s about seeing all the different types of impact that adoption can have a family, including the financial implications when you have to give up work due to the demands of parenting; the high risk of family breakdown; the inability to have ‘normal’ holidays and to recharge; the damage to your home caused during a child’s frequent violent rages…

So, agencies, please don’t throw around phrases like #SupportAdoption without really thinking through the implications of what you’re saying.

It’s not only about supporting the concept of children being placed in loving families – who wouldn’t be in favour of that? Finding safe places for children to grow up is about long-term support and making sure that the child and the family around them can all thrive as a unit.

A national issue

It's disingenuous for agencies to say they '#SupportAdoption' while it's so difficult to access help. Click To Tweet

It’s disingenuous for adoption agencies to say they ‘#SupportAdoption’ while making it so difficult for families to access the help they need. My own local authority loves a hashtag and a promotional pen but even they would not dispute that our experience of their post-adoption support has been appalling. They have apologised for the worst of it but we are still only clinging on to some semblance of ‘normal’ family life. It’s not sustainable and they know it, yet they still drag their feet in resourcing us properly to care for the children. And it’s not just us – this is a national problem, as the recent media discussions about CPV have highlighted.

What I’d like to see next year

So by all means recruit new adoptive parents and have a week to focus people’s attention on adoption. Of course we still need more adoptive parents. But recruit them with honesty about the challenges, not with cute photos and false promises.

How adopters can help bring change

adoption-support-thunderclap

I think in general, adopters are far better at this social media business than the majority of adoption agencies. We bring authenticity, lived experience, and genuine compassion for each other into the picture. So let’s use our collective voice to raise awareness, help prospective adopters know what the reality is like, and encourage agencies to up their game when it comes to support.

There are a few ways you can do this:

  • Join our own Thunderclap – this means your account will join others in sending an automated Tweet like this on Thursday lunchtime. Details are here: thndr.me/qxbuKe.

  • Share this post, using the #ProvideAdoptionSupport hashtag. (Sharing links are below.) Maybe tag an adoption agency or two… Or the Prime Minister (@Number10Gov).
  • Tweet your own experience of needing your agency to #ProvideAdoptionSupport.

Let’s get the word out that adoption requires support, not just recruitment.

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CPV: Behind the headlines

Last week was a good week for media coverage of CPV. It helps when you can, as shorthand, say ‘Please listen to last night’s File on 4‘ when you want someone to understand a bit of what it’s like to live with the verbal and physical torrent that pours out of our children.

I appreciate that people in positions of power are starting to listen. I’m grateful for media coverage that reduces the stigma of CPV. I understand that things are starting to change on the macro scale, in offices and meeting rooms somewhere. But it is so hard not to be impatient for the day when I will be able to see and feel the impact on a personal level.

cpv-behind-the-headlines

On BBC Breakfast, Adoption UK CEO Sue Armstrong-Brown repeated the statistic that about a third of adoptive families are doing OK, about a third have some problems that can be resolved with help, and about a third have severe problems.

In the last year I think we have moved from the second group into the third.

Mainly because the help is just taking too long to materialise. The behaviours are becoming well-worn pathways, and we are becoming well-worn-out parents. I have now started describing our situation as ‘blocked care’ – that is, we are so permanently mentally and emotionally exhausted from dealing with the verbal and physical abuse that our children direct at us and each other that it is becoming difficult to do anything much beyond ensuring they are clean, meals are provided (I want to say ‘they are well fed’ but that is another battleground), they have the opportunity to get enough sleep, and they are at school when they should be.

Yes, I still love them. I don’t want to stop being their mum. But this doesn’t feel like parenting. It’s like some kind of state-run endurance test. And I’m not even sure what passing the test looks like. There are glimmers of what might pass for normal family relationships – a hug at the school gates, a few pages read from a school book, a day out at the weekend (though usually we ‘divide and conquer’ because the children cope better one-to-one). But I still feel  the ‘parenting isn’t supposed to be like this’ feelings more often than I’d like.

The email

Recently, after a horrible few days of CPV, I emailed post-adoption support. Again. Specifically, I contacted a manager who has been involved with our family for almost a year and knows me and Pete fairly well. Here’s what I wrote.

The girls’ meltdowns are particularly frequent and intense at the moment and I have mentally drafted an email asking to disrupt about half a dozen times in the last fortnight. I think it is appropriate that you know how close we are to saying we can’t do this any more.

As I write this Charlotte is having another meltdown and trying to hurt Pete because she wants to go in the car rather than walk to school; last night Joanna did her best to kick, bite and scratch all three of us and screamed about wanting to be dead rather than live with us. This is happening daily. When we try to help them they shout abuse at us and try to injure us and break the house. They are so argumentative and aggressive with each other we are having to separate them as much as possible at home. We cannot continue to live like this. If Joanna doesn’t get the residential school place we’re asking for, I don’t see how we can continue.

The response

The manager tried to phone me. I don’t like talking on the phone at the best of times, and certainly wasn’t up to coping with discussing it all. I emailed and explained that. She said that was fine, she’d email. Another few days passed. I had a very brief email back, saying she’d made some phone calls to CAMHS and had a chat with her manager about the respite foster care they’ve been promising for 9 months, when we finally had an apology for the way they’d handled our request for safe holding training. Oh, and by the way, the SEN team’s EHCP meeting to discuss Joanna’s school provision has happened without us, school, or the EP knowing.

Phone calls and chats-with-managers are all very well but make no tangible difference until they result in action. The six-hour sessions of respite on some Saturdays at our local SEND activity club are welcome. They really are. But they barely give us time to fill in the next round of paperwork and have a coffee before the children need picking up again. We need overnights. We need several days in a row to decompress, feel the stress lift, and feel that we have properly come up for air before diving back in.

The meeting

A couple of days after this exchange of emails we had a TAC meeting at school. We gathered in a classroom – me and Pete, the class teacher, the TAs, the head, the SENDCo, the EP and this manager from post-adoption support. The fact that the SEN team’s meeting had taken place was news to everyone else there too. he PAS manager said ‘Obvioulsly they’d prefer to look at day schools first…’

I couldn’t let that go unchallenged. All the way through this process we have said that Joanna needs a residential placement because (a) transitions are part of the problem, (b) we are not coping with both the children at home antagonising and attacking each other, and (c) it would really help her to have a consistent, wrap-around approach. We expect the post-adoption support service to support us and to advocate for us with the SEN department. They won’t, of course, because then they will be asked to pay for the residential stuff that qualifies as ‘social care’.

She started trying to pin the blame on SEN, or on the placing LA. I wasn’t having that. Support for our family has been her responsibility for more than a year now, and after messing that up by stripping out everything  the placing LA had arranged, we are now back to where we were a year ago.

Here goes…

I didn’t lose my temper. Not quite. (I am usually the epitome of calm and professional in these meetings.) But I certainly raised my voice.

‘You are the head of post-adoption support! We’ve told you by email, and now I’ll say it again, in front of all these people…’

I was close to tears now.

‘…that we’re not coping, and that if she doesn’t get this residential placement she is likely to end up back in care. There are only two of us, sometimes only one of us [because Pete travels a lot with work]. We have abuse screamed at us on a daily basis. We’re dealing with self-harm, suicide threats, death threats, and violence. They’ve run away. We’ve had the police round. We need you to make this school place happen.’

I could barely look up, but I could feel the eyebrows of all the school staff rising in unison.

Funnily enough, the manager had to leave for another meeting about then.

I took a deep breath. Pete squeezed my hand in solidarity.

What next?

The school staff asked what they could do to help. They’re kind and well-meaning but there isn’t much. A few more members of staff are getting Team Teach training so they can cope with Joanna at breakfast club and after-school club as well as in the classroom. They’re transitioning slowly from one TA to another with a background in mental health care, who we think is better suited to managing Joanna’s needs. They’re doing all they can.

But the difference, as ever, is that the school staff are responding because they see the need first-hand. They have to cope with (some of) the meltdowns. (Charlotte saves all hers for us.) This manager has never met our children, nor have the people in offices making these budget-driven decisions. They haven’t dealt with the rage, or the sobbing aftermath. They haven’t had to pick themselves up after a school run during which they have been physically and verbally abused and get on with a day’s work. Again.

The media

This for me is what was missing from the media coverage last week. The abuse was mentioned more than it has been before, but I want to hear as much from families as we do from the office-dwellers. I want it all on display – the bruises, the holes in the walls, the broken windows. All of it. I want people to appreciate the full impact on adoptive parents’ mental and physical health. I don’t want to be held up as a saint and told I’m wonderful, I want to be properly supported to be the front line of support to my children, and I want them to get all the therapy they need without having to wait years to receive it.

I’m tired. I cry about this a lot. I used to be an articulate campaigner but I am worn out. I’ve banged on all the doors and they’re staying shut. How much longer will it take?

Before you go…

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  • You can find me on Twitter, Facebook, Instagram and Pinterest. I love to talk to fellow adopters.
  • You can also sign up here to receive my monthly newsletter. It contains my recent blog posts, my favourite adoption-related blog posts by others, and relevant resources from around the web.

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Headspin: an update

How do other adoptive parents juggle all the stuff that we are expected to cope with? How does anyone cope with all the advocacy and admin and energy required for parenting two or more children with additional needs of any kind? This week I am really feeling the resulting headspin. My brain has way too many tabs open – too much stuff pending. Too many forms, and emails, and meetings, and phone calls.

headspin

As we hurtle towards half term (how did that happen? It was only Easter ten minutes ago), here’s what’s going on with us.

SEBD school visit

As I’ve mentioned previously, Joanna’s needs are not being met in her mainstream primary school, and she needs an alternative placement. Following the EHCP review, we visited our first SEBD school. I asked most of my questions. The school was good – lots of evidence of good strategies in place for helping the children with self-regulation, lots of breakout spaces for children to use to calm down, staff whose job it is to track children around the premises and help them to return to where they are supposed to be, that sort of thing. The OT facilities were particularly impressive. We liked the headteacher. But I had an uneasy feeling, and I haven’t quite put my finger on the reason.

The boarding dilemma

Part of it is about boarding. We’ve said we’d like to consider weekly boarding. I’m still torn about the boarding side of things – we need the respite, it means fewer transitions and long car journeys for Joanna, but she is still only eight years old, and I don’t want her to think of it as a rejection. When the person showing us round the school said ‘And here’s where we teach them to do their own laundry’ I had to take some deep breaths as I thought about what is in effect someone else parenting my child during the week and her learning all those little steps towards independence from someone else. Once we’d left the school I may have had a bit of a cry about that. Trying to put my feelings aside and focus on what is in Joanna’s best interests is a bit harder than I thought. Turns out I feel pretty horrible about asking for respite when it means my little girl living somewhere else. I need to get over not being able to meet all her needs myself, however much I’d like to. That’s hard. I don’t understand my own thoughts and feelings about it all. How can I be jealous of someone else getting to do that stuff with her and for her and yet at the same time be asking for respite because I am finding it so hard myself?

So. We still have at least two more schools to visit, but I haven’t booked them yet. There’s so much processing to do; so much else going on; so much psyching myself up for it all needs to happen.

Risk assessment

A few weeks back, as well as scaling a 7-foot wall and escaping from school, there was an incident where (a) Joanna ran away from home, (b) we tackled her to the ground in the park after 40 minutes of not-quite-chasing her; (c) a couple saw us grab her, heard her scream and assumed we were abducting her; (d) said couple called the police; (e) I pre-emptively emailed  school and PAS; and (e) the police came round to talk (supportively) about it all. PAS subsequently came out to do a risk assessment to help move things along in terms of the support they can offer. The idea is that by illustrating the constant need for us to be risk-assessing all the possible moves the girls might make, the CPV, the risk of various types of self-harm and putting themselves in dangerous situations… they can justify providing us with respite and putting pressure on the SEN team to speed up the school placement business.

Occupational Therapy

Meanwhile the OT has started working with Charlotte. (A full year after the OT assessment was done, but let’s leave that rant for another day.) Today she is in school talking to the teachers about both girls. She’s also doing an observation of Joanna as part of her assessment. Said assessment will form part of the paperwork for the EHCP review, which should support our case to get appropriate help for her. Obviously the funding isn’t yet in place for the OT to work with Joanna as well, but apparently PAS are working on it.

CAMHS

Joanna is still on the waiting list – that’s 8 months since her assessment. Charlotte is on the waiting list to get an appointment to be assessed. Not even a date for the initial consultation yet. Don’t hold your breath.

Alternative psychotherapy

Joanna’s previous therapist (whose funding didn’t get renewed in the LA handover debacle) has recommended that Joanna have EMDR therapy which sounds a bit strange at first but seems to get great results. An ASF application for funding went in two months ago. PAS are supposed to be chasing it and/or funding it themselves. Again, no news.

FASD assessment

We continue to pursue an FASD assessment for Charlotte. The paediatrician has bounced it back to the GP with a permissions form for us to complete. Sounds straightforward, but they expect us to sign to say that we’ll accept the panel’s verdict about what happens next, which could mean Charlotte actually seeing the paediatrician, but could be them sending us on a parenting course. That is one of the options they can prescribe and if we sign the form, we’re saying that’s acceptable, which it isn’t. Obviously. I’m very much up for any course that is FASD-specific, but not as an alternative to actually seeing a medical professional who can make a diagnosis. So we haven’t signed, and the school nurse is having a conversation with the GP about it all. Again, no news for a week or so. I’m expecting a call any day.

The book

After a ridiculously long hiatus which we’ll put down to ‘dealing with life’, I’m resuming work on my self-care book. (Hurrah.) This week I’ve completed a first draft of the first chapter and have sent it to some agents I’m meeting next month. (If I say that quickly it doesn’t sound as scary.) More details will follow, and there will almost certainly be more requests for people to be case studies for various aspects of self-care in the weeks/months to come. Watch this space.

Self-care

I between all this, I have my now annual self-care week – a solo trip to soak up some restorative mountain views, sleep, practise my excruciatingly poor German language skills, shut down a few of those headspin-inducing tabs for a whole, and generally be Hannah, not just mum. That’s coming up in a couple of weeks, or to be precise (not that I’m counting…)

I. Cannot. Wait.

Peace! Sachertorte! Mountains! Strudel! Maybe the occasional yodel… I am so thankful for the airmiles that Pete clocks up with work.

So in the next 24 hours I’ll be sticking my Teach Yourself German cassettes on again (‘Ist der Garten schön? Ja, der Garten ist schön…’) and battening down the hatches for half term. I hope yours is a (relatively) peaceful one.

PS I’m sorry if you’re sick of seeing this on Twitter. But I’d be so grateful if you could spare a minute to vote for me in the #BiBs awards if you like what I have to say about the importance of self-care for adoptive parents. Thanks.


BEFORE YOU GO…

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  • You can find me on Twitter, Facebook, Instagram and Pinterest. I love to talk to fellow adopters.
  • You can also sign up here to receive my monthly newsletter. It contains my recent blog posts, my favourite adoption-related blog posts by others, and relevant resources from around the web.
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10 mental health challenges for adoptive parents

It’s Mental Health Awareness Week. To mark the occasion, and because I believe that the mental health of adoptive parents is both (a) critical to the success of adoptive placements and (b) massively overlooked and under-resourced, here are my 10 mental health challenges for adoptive parents.

Keep reading below for my five possible solutions, and my rallying call for a new campaign.

10 Mental Health Challenges For Adoptive Parents

10 mental health challenges

These are just some of the things I  – and many others – deal with on a daily/weekly basis. Any one of these is difficult. Taken in combination they are a threat to good mental health.

  1. The fight to be respected as an authority on what is best for my children, not dismissed as ‘just Mum’ because my professional qualifications are in a different area.

  2. The fight to get them the support they need. The constant stream of forms, appointments, phone calls, waiting lists, and rejected applications.

  3. Frequently explaining to professionals and passers-by that actually, it isn’t our parenting that’s the problem.

  4. Battling to stay regulated while the children scream in my face, throw things at me, and try to hurt me, because I gave them their lunch, or asked them to put their shoes on, or said it was bedtime. (Read more about child-on-parent violence in adoptive families.)

  5. Helping them to become regulated again after a meltdown when I want to curl up under the duvet on my own and release some of the stress with a good cry.

  6. Trying not to dwell on the hurtful things they said while they were angry, and convincing myself they didn’t mean them.

  7. Living in fear of confrontations with other parents because of my child’s behaviour towards theirs.

  8. Making time for self-care, only to have it interrupted by a call from school because they can’t cope and want me to go and calm my child or collect her.

  9. Trying to ensure the children hear consistent messages about their worth and behaviour at school and at home; that they’re not thought of as ‘naughty’.

  10. Being the administrator and communications hub for every aspect of my children’s care. The meetings. The emails. The phone calls, the form-filling. The trying to get all the different parties – PAS, GP, CAMHS, OT, EP, psychotherapist, school – to speak to each other and just copy me in on emails. Trying to manage them all is a full-time job in itself. On top of my actual job. And therapeutic parenting. Oh, and self-care. And having a marriage that benefits from time spent together outside of childcare and meetings and paperwork.

Aaaarrrggggghhhh.

So what’s the solution? If only there was a neat answer. I have a few suggestions though.

5 possible solutions

  1. Prioritise self-care. MummyWriter wrote an excellent post on this recently, and you can use my free self-care resources to get started. Until things change on a wider scale, we have to manage this for ourselves. I’m sorry, it’s rubbish that it’s like this, but it is. Look after yourself. Start here.

  2. Connect with the adoption community. Reach out to other in the same situation. Twitter is especially excellent for this, but I also go to Adoption UK’s local meetings and other informal gatherings of adopters. I recommend going to adoption conferences and training courses whenever you possibly can, not just for the content, but to meet other adoptive parents and to experience being among people who understand. I don’t know how people manage without the support of other adopters. This is such a massive source of sanity for me.

  3. Don’t sweat the small stuff. When you’re feeling overwhelmed, pick your battles, both in terms of the children’s behaviour and the stuff you fight for with school and support services. Sometimes (most of the time?) you can be fighting battles on multiple fronts simultaneously. Of course you’re exhausted. You need support. Get the people who are supportive to fight some of them for you. Put some of the others on hold until next week. And then go and have a sleep.

  4. Don’t vote Conservative. I’m sorry to get political here but the cuts to social care imposed by Conservative governments have played a huge part in getting us into the current mess, where tiny budgets and understaffing restrict the help received by vulnerable people. THIS IS HORRIBLE. Vote for those who will fund social care, mental health, and the NHS in general. We need those things.

  5. Ask the powers that be for a proper national campaign, like the ‘Maternal Mental Health Matters’ one that ran last week. Not just the constant recruitment ads for new adopters. Adoption agencies need to care for the adoptive parents who are already living this, in at the deep end, because without us the whole business falls apart. The adoption charities need to work together on this. The voluntary agencies are probably a bit better at this than the LAs. Let’s share good practice and be open about what’s needed.

So let’s start working towards the launch of an Adoptive Parents’ Mental Health Week. Heck, I’m claiming the #APMHW hashtag now.

Join in! Tweet a few LAs and VAs and ask them to think about it. Something like this, perhaps:

Let’s make this happen. Because we’ve earned it. 


BEFORE YOU GO…

  • If you found this post helpful or interesting, please vote for it. Thanks! 🙂
  • You can find me on Twitter, Facebook, Instagram and Pinterest. I love to talk to fellow adopters.
  • You can also sign up here to receive my monthly newsletter. It contains my recent blog posts, my favourite adoption-related blog posts by others, and relevant resources from around the web.
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30 questions to ask SEBD schools

Having started the fight to get Joanna into a specialist school in the last couple of weeks, we’re keen to keep up the momentum and arm ourselves with plenty of first-hand knowledge from Actual Visits so we can make the best possible case to the SEN panel. And here is where it begins: my 30 questions to ask SEBD schools.

They want paperwork, they’re going to get paperwork. I’m going to write a masterpiece comparing and contrasting the various options. Bring it on.

30 Questions To Ask SEBD Schools

To recap: we’re looking for a specialist SEBD (social, emotional and behavioural difficulties) school for our eight-year-old daughter, Joanna. Her current mainstream primary school can’t meet her needs or cope with her dysregulation and violence. We are struggling at home  with both girls’ CPV and fighting each other. (Read more about our CPV experience here.) There have also been a couple of running away incidents lately – one from school and one from home. Arrrgh.

We’ve just had an EHCP review (brought forward after a rash of exclusions for violence last term) and although we had a good argument for a particular school based on a lot of Googling and scouring of websites, we agreed that we also need to visit the three schools under discussion in order to make an even more informed choice.

30 questions to ask SEBD schools

We’re going to see the first school (our current first choice) this week. I’ve been thinking up questions. Here’s my list so far.

The home–school relationship

1) How do you keep in touch with parents?

2) How frequent are communications – not just about academic progress, but behavioural and general comments in what’s going on for her?

3) What does the partnership with parents look like in terms of consistent strategies around behaviour to make sure Joanna receives the same messages at home and school?

Academic issues

4) How does the transition from mainstream work? What would that look like for Joanna?

5) What would the year 4 timetable look like for Joanna?

6) How do you measure academic progress?

Therapy and behavioural issues

7) What therapies are available on site?

8) Are class teachers/TAs trained in issues relating to early trauma?

9) What proportion of the pupils come from a similar background?

10) Would she miss lessons for therapy? How does that work?

11) Is therapy delivered 1:1 or in groups?

12) Joanna has been working happily in class for 90 minutes and is then given a maths question that she can’t immediately work out. Her self-esteem is threatened and she suddenly becomes angry, shouting, throwing a chair at someone and running out of the room. In your school, what happens next?

13) Do you have much sensory OT work incorporated into the classroom?

14) What are your expectations of her? What happens if she fails to met your expectations?

15) What measures do you have in place to stop her running away?

Boarding

16) What is in place for keeping in touch with Joanna during the week? Can she call us?

17) What routines are in place in the mornings and evenings?

18) Who would be looking after Joanna in the mornings and evenings? Can we meet them?

19) What happens if she’s ill?

20) Can we see what the rooms are like?

Social skills

21) What help is available to Joanna for developing social skills, building friendships, etc?

22) What are the male/female ratios in her year group? In the school overall?

23) Are there any extra-curricular activities available (eg football, chess, drama)?

24) Joanna really struggles with transitions. What do you have in place to help with different types of transitions (on a daily basis, between school years, and from primary to secondary)?

25) What behavioural issues is she likely to learn from other pupils? What are the main issues they face?

Securing a place

26) If we really want Joanna to come here, what are the arguments you’d recommend us putting to the LA in the EHCP review paperwork?

27) What’s your relationship like with the LA’s SEND team?

28) Do you have any other advice for navigating the system?

29) How competitive is your admissions process?

30) What do you think is the school’s best selling point?

More questions

These 30 questions are just a starting point. I’d love to hear other people’s, especially if you’ve navigated this process already or are doing it at the moment. Is there anything you think I’ve missed? Let me know in the comments or on social media (see below).


BEFORE YOU GO…

  • If you found this post helpful or interesting, please vote for it. Thanks! 🙂
  • You can find me on Twitter, Facebook, Instagram and Pinterest. I love to talk to fellow adopters.
  • You can also sign up here to receive my monthly newsletter. It contains my recent blog posts, my favourite adoption-related blog posts by others, and relevant resources from around the web.
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Review | The Special Parent’s Handbook

This book covers it all. From food issues to advocating for your child, via handling meltdowns and battling with paperwork, The Special Parent’s Handbook addresses everything with the humour and practical advice that comes from hard-won first-hand experience. Whether your child’s issues are physical, mental, or emotional/behavioural, there is something here for you.

Professionals should read this too. There is so much here about the impact of being relegated to a mere ‘service user’ on actual human beings. The Powers That Be could learn a lot from The Special Parent’s Handbook about how our mutual interactions can be improved by listening – really listening – to young people and their parents.

Review: Special Parent's Handbook

About the (amazing) author

I first became aware of Yvonne in March this year. She was tweeting about an event she was organising for parents of children with violent, challenging behaviour, or VCB. As I fall into that category twice over, I signed up straight away, and on Saturday 1 April joined 80 other parents in London for the conference.

At the conference, a well as hearing from a number of experts in the NHS and legal fields (find them all on this Twitter list) about their perspective on children with additional needs and helping them to access services, Yvonne spoke about her experience with her son Toby. As is usually the case, the people who live this are the ones who are most helpful. Yvonne talked about how she helps Toby to regulate by reducing instructions to short phrases, often sung to him to remove any stress from her own voice which could cause his behaviour to escalate.

It completely blows my mind that Yvonne wrote this book in four weeks flat having received a terminal cancer diagnosis. Yvonne – I know you’ll read this – you are such an inspiration and I have no idea where you find all your energy. Thank you. What you have achieved in this book and continue to achieve through all your campaigning and bringing people together is amazing, and I know there are hundreds of us who appreciate it all. (Do please remember to put your feet up occasionally!)

So. Why is the book so good?

About The Special Parent’s Handbook

The Special Parent’s Handbook is gold. In my Amazon review I summarised it like this:

This book is great. Yvonne has such a depth of experience and the wisdom that comes from having learned a lot of things the hard way. Her family’s story is told with humour, grace, and insight and in a way that makes it all very relatable. Her advice on accessing services you didn’t know existed and on battling for the help your family needs is invaluable. I related to so much of the content. It should be required reading for all the professionals we encounter as well as for SEND parents and their friends and families.

What it covers

Toby has a combination of disabilities: learning difficulties, autism, and a physical disability which means that he needs to be tube-fed. You might wonder, then, how his mum’s unique experiences with him translate into more broadly applicable advice for other parents. Yvonne has managed this well, by separating the advice into chapters by topic while also weaving in her family’s own story. To give a flavour of the wide-ranging advice, here are a few of the chapter titles:

  • The Advancing Army of Professionals
  • Building your Support Network
  • Siblings
  • Becoming the Expert
  • Being in Hospital
  • Hospital Appointments
  • CAMHS
  • Education
  • Social Services
  • Food Issues
  • Meltdowns

My children Joanna and Charlotte have no physical disabilities, so although I read it cover to cover, I particularly honed in on the chapters to do with support, both formal and informal, and on the behavioural stuff (meltdowns, siblings, and food issues). It addresses these incredibly well. The writing style is conversational and very accessible, making it ideal reading for exhausted parents with little residual brainpower at the end of a difficult day!

Real-life advice

Though Yvonne’s children are not adopted, there is a huge amount of overlap in the types of services she has needed to access, and the battle to be heard and respected as a parent is the same across education, health, and social care. I thought Yvonne’s advice on this aspect of parenting was one of the highlights. It includes tips such as putting a framed photo of your child on the table in important meetings, to remind the professionals that this is about the child, not their budgets and policies. My Kindle highlight facility went into overdrive on this book because it contains so much real-life helpful advice. You know what I mean. Actual practical stuff that helps. This is the book’s focus. She nails it.

Summary

Review | The Special Parent's HandbookI recommend this book wholeheartedly. Whatever additional needs your child has, the guidance on advocating for them, on surviving as a special needs parent, and on doing it all with your sanity and sense of humour intact are all here. Adoptive parents may even rejoice that there is no specific mention of post-adoption support, though social services in general are comprehensively addressed.

Once you’ve read the book, I can also recommend connecting with Yvonne online. You can find her on Twitter (@YvonneNewbold), through her website (yvonnenewbold.com), and through her various Facebook pages: The SEND Parent’s Handbook and Breaking the Silence on VCB.

THE DETAILS

The Special Parent’s Handbook
Yvonne Newbold
Amity House
£12.33 (Kindle £7.36)


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Review | The selfish pig’s guide to caring

The Selfish Pig's Guide to CaringCaring for a family member is often hard work, usually unpaid, and can be overwhelming. This book is about having a life outside of that role so you don’t spontaneously combust under the pressure.

How it started
A colleague of Mumdrah’s read this book, Mumdrah put a photo of the cover on Twitter, and twenty minutes later I had seen some reviews, bought a paperback copy, downloaded a free sample for Kindle, and read two chapters. And yes, it is fabulous. I suggest you do likewise as soon as you’ve read this.

Self-care for carers
The premise of the book is that there are hundreds of books about caring for people and doing a better job of it and all the things the person being cared for needs from you, but this book is about looking after yourself and not becoming swamped by caring and losing sight of who you are outside of that role. In short: self-care for carers. With a sense of humour.

Of course I liked it. It ticks all the boxes: darkly funny, relatable, empathetic, often sarcastic, and a bit political (with a small ‘p’.)

The pig thing
The author sets the tone early on by announcing that he doesn’t know of a good name for the recipient of care, so he invents a pleasing acronym: ‘Person I Give Love and Endless Therapy to’, or Piglet, making the carer the pig. The ‘selfish’ bit comes in when we dare to think about doing something for ourselves and feeling bad about it. We shouldn’t feel bad. Self-care is a healthy a survival strategy.

Excerpts

‘What’s so hard to take is not the reality of having to be self-reliant. There’s a lot of satisfaction in that. It’s the failure of expectations which catches you out. It’s like reaching for a banister on the stairs, discovering there isn’t one, and almost falling over the side. If you knew there wasn’t a banister in the first place, you wouldn’t have had any trouble climbing the stairs.’

‘Asking politely doesn’t always work. Hang on, maybe I should re-phrase that. Asking politely only works when you’re not dealing with Officialdom. In the case of Officialdom you have to insist, insist again, carry on insisting more and more loudly, bang the table and stamp your feet. It may be something you can do easily, something that’s completely in character. Or it may be the kind of thing you’d sooner die than do. Whichever, it’s almost certainly something you’re going to have to get used to doing. There’s almost nothing more likely to make you feel alone and isolated than attempting to communicate with a government department. So for your own protection, it’s best to develop a thicker skin. And for the sake of your piglet, ie if you want to get help for them, you’re going to be a more effective carer if you really concentrate on being a shameless, practised, determined, strong-minded, and utterly SELFISH PIG.’

Screenshots of bits I particularly liked from the Kindle version

pig 4

pig 1pig 2pig 3

Especially helpful
Chapter 19 is a list of potential sources of information and help. As this is a general book about caring, written from the perspective of a man caring for his wife (who has Huntingdon’s disease), some of it requires a bit of lateral thought to apply it to the adoption context and to your child(ren)’s specific needs. But beyond the usual triad of social services, the NHS, and the education system, it discusses the founts of knowledge and help that can be accessed through occupational therapists, carers’ support groups, the Citizens Advice Bureau, and a lot of creative Googling. I would also add ‘get active on Twitter‘ because there will be someone else who has been where you are and can share resources or at the least, make you feel less alone.

Summary
The core message of self-care for carers is a vital one. Carers of all kinds should read this book. Adoptive parents will find a lot to relate to. The stuff on dealing with ‘Officialdom’ is especially helpful (and amusing, assuming you share a rather cynical sense of humour about such things).

The Selfish Pig's Guide to Caring (self-care for carers)The details
The selfish pig’s guide to caring
Hugh Marriott
Piatkus
£9.98 (Kindle £6.99)
Second edition published June 2009

 


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A limerick for #WorldPoetryDay and #WorldSocialWorkDay

WSWD Limerick

By happy coincidence today is both World Poetry Day and World Social Work Day. I wrote this humble offering in the car this morning before returning home from the school run.

Social workers round here in the Shires
Just don’t like it when someone enquires,
‘What help is there, please,
to address CPV?’
They only talk at us about how we’re not allowed to restrain and there isn’t the budget for family therapy and ‘How about we have another meeting?’ and we still have to live in fear of our children’s violence and the whole thing never satisfactorily resolves.

You can read more about CPV (child-on-parent violence) – my story and others’ – on my CPV stories page.


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The Best Exotic Post-Adoption Support

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Our post-adoption support team changed recently. Three years after the adoption order, we switched from the placing LA – a lovely team who even responded to messages on their days off and in the evenings because they really cared – to our own LA, who are… different.

We’re having a really difficult time at the moment (see my post about our children’s violence) and have asked for some extra support. But they have taken exception to a couple of our requests, particularly the one where we asked for training in how to safely hold our children when they are attacking us or each other. We think the risks of not holding the children at these times – including injuries to us and each other from bites, kicks, scratches and the throwing of anything that comes to hand – outweigh the risks of holding them as safely as we can, which is basically a firm cuddle or the holding of their hands. They’re saying (having never met our children, of course) that we are Definitely Not Allowed to hold them at all. School staff are allowed, having been given training, but we’re not, because that is the policy. Those are the rules and they Must Be Obeyed and because we question these rules we are bad parents who are being referred to safeguarding. Yes, really. It’s horrendous. It has made me literally sick with worry. Thankfully our headteacher supports us completely and has argued our case, having been on the receiving end of Joanna’s violence and used safe restraint herself. Many others we have told – those who actually know our family, including Joanna’s therapist – have expressed their willingness to speak up in our defence if required. But still it drags on, hanging over us and reducing me to a sobbing mess several times a day.

We asked for help because we are getting bitten, kicked, scratched and hit by the children we love. We want to keep the children safe while they attack us and we defend ourselves. I still don’t understand why this is wrong.

After pondering my interactions with several members of the new team, I realised that their attitude reminded me of something. There are a couple of scenes in The Best Exotic Marigold Hotel where Evelyn Greenslade (played by Judi Dench) deals with call centre staff who are only focused on their script, not on the human being they are speaking to. This short clip sums up the problem.

Evelyn: ‘A little while ago I talked to someone who was so constricted by the script… that she spoke without a trace of humanity, as if she hadn’t realised that I was going completely to pieces at the end of the phone.’

My calls with the new PAS people have made me cry, both during the conversation and afterwards, and I’m not generally a weepy person. But they didn’t stop to listen, or apologise for upsetting me, they just continued to recite jargon-filled management speak – repeatedly interrupting me while I was still trying to talk – as though they were reading from a script. (And not one written by Ol Parker.) There was no compassion for our situation when I patiently, if tearfully, tried to explain what would happen if we didn’t hold our children. No humanity. Just judgement.

So what do we do in the face of this? I’ve been considering this a lot lately (often when I’ve been awake in the small hours). Do we match their terse tone with an equally emotionless response, keeping everything merely businesslike? Or do we continue to show that we are human beings with feelings, which I seem to recall was considered an advantage when we were being assessed as prospective adopters?

We’ve chosen the latter. Or to be more accurate, it has chosen us, because no matter how articulate and professional a person can be at their best, if you cause them enough stress and that leads to enough sleep deprivation, they’re not going to be able to keep from displaying emotion if you keep on questioning their judgement and telling them they are terrible parents.

Our ability to empathise with our children’s feelings is a good thing, and our priority is always keeping them safe, so why are we not afforded the same courtesies of empathy and safety from those who are supposed to provide our support?

If you’ve had a similar response, especially if it’s been related to asking for help with CPV (child-to-parent violence), I’d really like to hear from you. Please leave a comment below or get in touch via  Twitter, Facebook, or email. If you’re one of the professionals of whom I am currently really quite frightened, please, please be kind. Thank you.

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A typical day in the Meadows household

calendar

It’s now three years since we got our adoption order, and our post-adoption support is about to transfer from the placing authority to our local authority. We’ll be asking for another formal assessment of our family’s support needs and so I’m putting together some documents to show what support we want and why we need it. This ‘day in the life’ is one of those.

6.00ish The girls wake up. Our rule is that they play quietly in their rooms, but sometimes Charlotte will sensory seek elsewhere, eg decorate the bathroom with a tube of toothpaste, put suncream on the walls, or go downstairs (which is out of bounds at that time). As soon as I am the tiniest bit awake, my ears are on high alert for any sounds that might indicate Things They Should Not Be Doing.

7.30 The girls come to our room and we all go downstairs for breakfast. Often Charlotte will have a tantrum about something – one of us looking at her, someone sitting where she wants to sit, etc – and she can take a very long time to finish her (small) breakfast (often one slice of toast). This is about control – she doesn’t want us to take it away but she doesn’t want to eat it either. If there’s any arguing over a seat to be done, Joanna is likely to join in too.

8.00 The girls get dressed. Sometimes this is done quickly, other times they procrastinate and get grumpy when we ask how they’re getting on. There are often meltdowns when we tell them to stop playing and to get dressed, to brush their teeth, that they will need a jumper, that it’s time to put their shoes on.

8.25 We leave the house (often with a bit of transition-related stropping) and walk to school. Usually at least one of the children will be grumpy en route, because of the transition, because they have poked each other, because we’ve said no to something, because they’d rather go in the car, because they want the other parent to take them, etc. Sometimes this will involve violence – to each other or to us, especially to Pete.

8.40 We arrive at school five minutes before everyone else comes in and sometimes manage a proper handover with the staff. Sometimes Joanna’s one-to-one assistant isn’t there or is doing something else.

8.55 The parent doing the school run gets home, exhausted, and then starts a day’s work.

During the day Hannah checks Charlotte’s room for contraband: things she has found or ‘borrowed’ from elsewhere in the house, at school, or in the street. These have included stones, feathers, Joanna’s toys, toys from school, used plasters of indeterminate origin, medication she found on the train(!) and hundreds of tissues and pieces of toilet paper, often chewed into little wads and put under the bed, or torn into confetti and left around the room.

During the day on Thursdays Hannah spends two hours at school attending Joanna’s therapy session.

During the day school may phone and ask Hannah to go in and help Joanna calm down, or to collect Joanna after she has been angry, violent and/or upset.

During the day Hannah returns calls/emails about the girls when she is supposed to be working.

During the day Pete often has to take time off work to attend meetings about the girls.

3.15 One of us collects the girls from school. Often there will be a strop immediately, especially if we accidentally ask them how their day has been. Often there will be another strop on the way home if we don’t take their preferred route or play with their friends on the way (obviously they will both have different preferences that cannot both be met).

3.40 We get home. The instant the front door closes marks the entry into the Peak Strop Zone (from now until bedtime). The other parent sometimes accidentally triggers another strop by looking at Charlotte/asking a question about their day/saying something that has already been discussed on the way home ‘and I AM NOT SAYING IT AGAIN!’ The girls play bicker together/go on their tablets/watch TV. There will be at least one argument at some point, and one or both will end up stamping up the stairs and slamming their bedroom door, then shouting about how they hate everyone. This transition from school to home is the time when they are most likely to be violent. (This is what that violence is like.)

5.00 Dinnertime. This will rarely please both children, who don’t approve of the menu/don’t want to stop what they’re doing/hate salad. Charlotte may have a massive tantrum, especially if there are tomatoes or anything green on her plate. Something will be spilt/dropped on the floor/hidden in her clothes because she doesn’t want to eat it and will put it in the bin/toilet later.

5.40 We all play a game together, as suggested by Joanna’s therapist. If Joanna doesn’t win, she has a huge meltdown, stamps up the stairs, slams her door and shouts/screams about how everyone hates her. We patiently go through all the therapeutic techniques with her (that we have established with her therapist), or she shouts at us that she is NOT DOING THEM.

6.00 Bedtime. The girls procrastinate about getting changed, brushing teeth, etc. If we ask how they’re getting on, or why they’re not in their pyjamas twenty minutes after we asked them, or what they’re doing naked in the other one’s bedroom (etc), there’ll be another meltdown. A meltdown at this point in the day can last up to 90 minutes.

When the girls are asleep

  • Pete works, if he needs to make up time lost to meetings and/or meltdowns during the day.
  • Hannah works, if meetings/calls from school have caused a delay during the day.
  • We discuss emails that need answering and whatever forms we are currently completing (there’s usually at least one on the go).
  • We read and comment in Joanna’s home–school communications book.
  • We check Charlotte’s school bags for contraband.
  • We analyse the events of the day and consider what to do.
  • We have no social life.

10.00–11.00 We go to sleep. Often Hannah will be awake at 3.00/4.00/5.00 worrying about the latest incident with the girls and what to do next.

And repeat.

Do you relate to this? If it sounds familiar I’d love to hear from you. Please get in touch through the comments or on Twitter or Facebook. If you missed my recent post on our experience of child-to-parent violence (CPV) you can read it here.

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