Barb has autism, and Lois is her therapist. Neurodiversity is their story. And it’s great.

Review Neurodiversity

It’s not a word I use often, but I think it’s fitting here. This book is a romp through the authors’ various neurodiverse experiences, both personal and professional. These include autism (this is the main focus of the book), ADHD, anxiety, dyslexia, and being gay.

It doesn’t sound like hilarious subject matter, and at times it was deeply moving, but it is also very funny. Their sense of humour is on display throughout the book. They have a lot of fun with tales of their experiences, anecdotes from therapy, brilliant success stories from Lois’s other clients, and just being generally amusing.

How is this book useful to adoptive parents?

First, a disclaimer. There’s nothing specifically about adoption in the book. But keep reading! Obviously if you or a family member have autism, ADHD, anxiety or dyslexia, there’s something here for you. It covers all these topics with both realism and wit. There’s also a pleasingly political bit about the fight for same-sex marriage legislation in the US.

The focus of the book is Barb’s autism – ‘the really bad kind’ – and the way she has overcome many people’s expectations of her to become a writer and podcaster despite being mute and only able to communicate using one finger to ‘peck’ at the keys of her laptop. She describes herself as ‘disguised as a poor thinker’ – a brilliant description of what it must be like to have her intellect and creativity stuck inside a brain and body that won’t cooperate in a typical manner.

Some days the words won’t come, because she doesn’t think in language.  Some days she bites her own arm until she draws blood. Sometimes she attacks others. But she refuses to let the autism win. It’s inspiring stuff. It’s encouraging to those of us with neurodiverse children. I’d say that it’s worth a few hours of your time to read it. And it’ll make you laugh.

Also, there’s some useful stuff about the therapeutic techniques that have worked for her. Things such as

‘I am not in the penitentiary today because I have a swing in my front yard and I know how to use it.’ 

See? Useful. Practical. Stuff we can work with.

Neurodiversity: what’s it about?

The book’s blurb describes it as follows:

A candid, practical, and defiantly funny guide to embracing neurological differences – from a bitingly witty autistic mute and her dyslexic, ADHD-wired, lesbian therapist.

Shattering the conventional notion of disability, Neurodiversity sheds light on autism spectrum disorder (ASD), attention deficit disorders (ADD/ADHD), dyslexia, and other neurological differences as natural human variations with their own challenges and strengths. While backed by brain science, the authors write from personal experience. Speechless (literally) due to severe autism, Barb Rentenbach communicates by typing one letter at a type. (Though “disguised as a poor thinker,” she’s imaginative, dedicated, and exceptionally patient.) Her therapist and friend, Lois Prislovsky, Ph.D., is an educational psychologist whose distinctive traits include dyslexia and ADHD. (She’s also married to a woman, a mom to a teenage son, and enjoys any new challenge – the wackier the better.) In alternating chapters, Barb and Lois share real-life stories, mind-opening insights, and down-to-earth advice to encourage everyone to see beyond labels, treat others with respect, and help each unique person become his or her highest self.

Written with honesty, compassion, and ribald humor, Neurodiversity offers reassurance and practical tips for parents, educators, employers, LGBT families, and anyone who loves someone who is different. Readers will discover:

  • The payoff of presuming competence and listening well (even to non-verbal people).
  • Do’s and don’ts for managing anxiety. (Do facilitate optimism. Don’t overprotect.)
  • Ways to help ADHD children excel, without medication. (Tips: Limit access to video games but don’t make unrealistic restrictions on movement.)
  • …and much more.

“Autism is my prism, not my prison,” Barb Rentenbach declares. A fun take on serious issues, Neurodiversity presents two wonderfully different perspectives on understanding how different brains think and maximizing our collective human potential.

Excerpts

These are some of my favourite parts of the book.

‘The truth is, aggressive outbursts have always been a part of my autism.

The frequency of my aggression has decreased significantly over the years, as I have become able to communicate more efficiently and REGULARLY. I don;t think I can report the severity of the attacks has waned. But to be fair, I bite my own self more than I do others. I find that makes me more popular.’

‘The brain automatically responds to threat. The limbic system can;t discern if danger is physically real. Despite orthodontic differences, a saber-toothed tiger and the cruellest popular girls in school heading your way may elicit the same physiological response. In The Fear Cure, Rankin classifies these as “True” and “False” fears. True fear is triggered when life and limb are threatened, and False fear is in your “imagination”. Both types of fear are bad for your health if sustained, as our bodies are not designed to be frightened often. Chronic reaction to stress is toxic if unrelenting. The good news is that both True and False fears can be beneficial, if you learn how to filter the messages.’

(The authors signpost readers to a lot of other useful and relevant books. I love this.)

For parents:

‘Children need to practice handling stress, fears, deadlines and mistakes. The acceptance of “not always getting it right” is a lesson we need to demonstrate and teach. It promotes brain growth and life-long learners.’

‘Persevere and remember to laugh. Laughter is like cross-fit for the brain. It engages and strengthens multiple regions across the whole brain and promotes flexibility.’

‘Don’t be too permissive. Letting children do whatever they want, whenever they want, does not “take the pressure off”. In fact, too much freedom may cause a child anxiety. Children become fearful and overwhelmed when given too many choices and denied limit setting. Set boundaries. Provide structure and clear, consistent rules so your children may concentrate on learning, growing, and exercising self-control, leaving the responsibilities of mature decision-making to you.’

Summary

Though not adoption-specific, there’s a lot here to encourage those of us parenting neurodiverse children who struggle with living in a neurotypical society and conforming to its rules and expectations. Those of us whose families are a little (or a lot) unconventional will find no condemnation here, just a useful collection of ideas to try, anecdotes to laugh and cry with, and the feeling of having connected with two authors who are immensely relatable and engaging. I recommend it.

The details
Professional Reader

Neurodiversity:: A Humorous and Practical Guide to Living with ADHD, Anxiety, Autism, Dyslexia, The Gays, and Everyone Else
Lois Prislovsky and Barb Rentenbach
Mule & Muse Productions with Sojourn Publishing
£20.33 (Kindle £7.62/FREE on KindleUnlimited) (Audiobook £14.60)
Published 1 June 2017

Disclaimer: I received this book free via NetGalley in return for my honest review.


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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.


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The Cornerstone Partnership is a social enterprise based in Maidenhead. They work in adoption support and foster care recruitment, retention and support across 14 local authorities in London and the south-east. They’re looking for experienced adopters to run their peer-led adoption support programme (and be paid for it), and have asked me to share this with you.

Could you run a post-adoption support group?

Are you an experienced adopter? Are you looking for a flexible business opportunity within adoption services or support?

The Cornerstone Partnership is seeking people to run their peer-led adoption support programme across the country. The Cornerstone programme is a three-pronged approach with support from the very beginning of the assessment through to post-adoption-order.

The Cornerstone PartnershipIt includes structured peer mentoring, therapeutic parenting training and support groups. The success of the programme centres on placing end users at the very heart of the model.

Could you help other adopters on their journey? If you’re looking for an opportunity to fit around family life, visit the Cornerstone website (www.thecornerstonepartnership.com) and download the application form at http://bit.ly/2pKntcp.

If you have questions, please contact The Cornerstone Partnership directly on 01628 636376
or enquiries@thecornerstonepartnership.com. Or do you know someone else who’d be great at this? Please send it their way. 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.
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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. 10 mental health challenges for adoptive parentsHelping 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. 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 others 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. 


Keep reading…

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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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