Month: March 2017

The Blame Game

The Blame Game

When Peter was in Year 2 I began to really question who benefits when a parent is ‘blamed’.  I tried to think of all sorts of scenarios and to really challenge myself to think of an example of a situation where someone benefits.  Sometimes I would even imagine asking a group of final year student teachers to go to their placements and explore every option, asking all the experienced staff, to try to describe a scenario where someone, anyone, benefits and then to present their findings to their each other.  Sometimes my mind drifts like that!

One afternoon I was at the school office with Peter when I noticed one of his classmates sitting in the chair that is reserved for children whose parents are delayed.  Along came this little boy’s Dad, looking tired.

Their teacher was ‘experienced’.  I was hoping she would soon retire, she was the sort that is a good example that experience does not, in any way, signal expertise. Continue reading “The Blame Game”

Who’s Who?

Who’s Who?

It is as plain as day that professionals don’t have a good enough understanding of the skills and knowledge of their colleagues and the contributions that they can offer.  I believe that this leads to missed opportunities that could considerably improve children’s outcomes and the experiences of families and staff.

I recently sat in a Paediatricians office with a friend whose son **NEEDS** a Speech and Language Therapist (SLT) REALLY BADLY.  When I asked the paediatrician about the possibility of a referral, the look on her face said “Tickets to the moon? There is no way we can do that”.

Honestly, we are talking about a very articulate 12 year old boy with a social communication disability that is crippling his life: daily.  “Social Communication Disability” I wanted to say to her – “The clue is in the name.”  Continue reading “Who’s Who?”

Thank you to the one that remained professional

Thank you to the one that remained professional

There was a lot of discussion around the post ‘No Smoke Without Fire: Safeguarding Concerns‘.  It seems that inappropriate social care referrals is something that has happened to many and can of course be traumatising to experience.

However there were also a number of comments about how critical it can be to have ‘that one professional’ that remains professional, has integrity and stays focussed on the child and their actual needs.  Someone you know will be honest with you and with those others who appear to be more interested in saving a budget or making a point to prove themselves right.  Some talk about a teacher, some a SENCo, a Social Worker or a Clinical Psychologist.  It doesn’t seem to matter what professional group the person comes from, any can and do make a difference.  

I imagine that being ‘that professional’ is very very tough at times.  I imagine that they are sometimes bullied by peers and managers and that the pressure from all directions (including that which you put on yourself to do more?) can be hard to manage.  Please know that we appreciate you beyond measure.

From the parents point of view having that one person that you can rely on can be a deal-breaker.  They are the reason you can keep going.  This is what you look like to those parents:

Characteristics of professionals that make a difference

  • they carry out careful and thorough assessments based on information from the child and family (not the TA the arrange to meet in the pub…);
  • they keep the child is at the centre of their work and thinking;
  • they document the results of their assessments their views, conclusions and recommendations with a sense of confidence and authority;
  • they avoid making assumptions and can justify their recommendations based on their assessments, research and a process that has carefully considered alternatives;
  • they demonstrate skills and expertise to a high level within their profession;
  • they are willing to listen to other professionals involved and can clearly describe the results of their assessments to others;
  • they remain true to their profession;
  • they consistently show integrity;
  • they ignore external factors (funding, the views of other’s preconceived constraints on services) when describing the child’s needs;
  • they are willing to appropriately challenge other professionals within the wider multi-professional team;
  • they consider the wider family issues, including the needs of siblings, and how these impact on the child they are assessing;
  • they properly, really properly, listen to the child and parents and carefully consider what their views and the experiences that they describe.

In summary, these professionals remain independent of other professionals’ viewpoints and comprehesively carry out their own independent assessment – holding the views of other professionals lightly, whilst exploring alternative hypotheses.

Of you are one of these professionals then we want to tell you that it may not always seem like it – but you do make a difference.  A very big difference thank you from the bottom of our hearts to you.  

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I’m not “mum”

I’m not “mum”

“You must be mum.”

Four words that put you nicely in a box and out of the way, even when you are present in a meeting.  That introduction says so much – you know you are simply there to be tolerated, to tick off a requirement and that you are expected to sit in the box marked ‘mum’ and ‘behave’.

For a disclaimer, please the the last paragraph, but in the meantime, how do you respond?  “I am Peters’s mum, My name is Phillipa – and you are?” is the one I used last time around.

I don’t know any parent that doesn’t hate this approach at times.  It can feel dehumanising and I think it sometimes serves a powerful purpose for the rest of the people in the room.  It can be used to state very clearly the hierarchy of those present.  Everyone else is a human, a person with a name and everything….. They have a profession, an identity as an individual and a role outside of the home.  You don’t.  You are ‘mum’ and if you are anything else as well, then that could be a problem so they may make sure you are just the generic ‘mum’. Continue reading “I’m not “mum””

Even good experiences can contribute to overload.

Even good experiences can contribute to overload.

By Rosie and Jo’s mum.

It took me a while to get my head round these two ideas:

1. My daughters can be enjoying activities that they have chosen to engage in, want to carry on with and benefit from in many ways while still feeling stressed and overloaded by them.

Playing with friends at the park after school is a great way for other children to wind down but for us it didn’t help. In fact the end-of -chool meltdown would be worse if it had to wait until after a visit to the park.

Going swimming is fun and she might never want to get out of the pool but, if there is more than a handful of other people in there, we have to limit the length of the session to avoid tears in the changing room.

Spending time with cousins who you don’t see often is a pleasure that is also utterly exhausting.

The run up to Christmas in school is always difficult because the parties, panto trips, special assemblies, presents, carol services, decorations, sweets, treats and dressing up may be fun but they are also disruptive to routine, unpredictable, offer sensory challenges and change people’s behaviour patterns. That adds up to a huge amount of stress.

2. You need to plan where to accept the stress and work out where to avoid it.

Getting dressed and organising your school bag without adult support, even if age-appropriate, can make it harder to cope with the transition into school.

If there’s a friend’s party in the afternoon, you don’t spend the morning shopping.

If you want to have a conversation about how things are going in school after dinner, make dinner something familiar that she likes to eat.

A top with sleeves that are a little bit tight might mean she can’t concentrate on her reading book.

A bad day at school might mean he needs to wear comfy joggers instead of jeans in the evening.

Don’t plan new shoes, a trip to CAMHS and a day out all in one week.

Rosie has been learning this herself over the last few weeks. She is at university. She has a part time job which she adores, a couple of lovely hobbies and a small, supportive friendship group. On top of her coursework, each of these aspects of her life take their toll on her energy and ability to cope.

In her first year at university, she carried on the routine established at home of planning down time and limiting activities to avoid doing too much at once. This year, she decided that she would like some more money and could cope with a job. Like plenty of other students, advice from mum is now taken with a pinch of salt, the downtime has gone by the wayside, the pull of pizza and film nights with friends has become stronger and the course workload has increased.

This has led to a series of meltdowns, some missed lectures, health issues that aren’t resolving and significant anxiety symptoms. We’ve spent a few hours on Facetime and the phone, written some emails together, worked out a more manageable routine and, fingers crossed, she is now back on track.

When I asked her if I should have been more bossy, she said no. If I had told her that she was making this mistake, she would have been determined to prove me wrong and it would all have been harder. “I had to learn from this mistake myself” she said.

It’s helpful when school staff can understand these ideas too.

I’ve often encountered surprise from a teacher because I’m telling them that an activity my child seemed to enjoy contributed to distress I saw at home later.

Running around in the playground isn’t necessarily a good way for a child with Asperger’s to spend their lunchtime. They don’t need more social interaction – the classroom is a very socially interactive place these days. Some quiet time in the library or tidying up the classroom are probably more likely to help an overwhelmed child relax and be able to concentrate in the afternoon.

Yes, she probably did seem pleased by the surprise visit from the magician but the meltdown after school was still the result of the stress it caused.

She might really enjoy maths but she is still worried about making a mistake and the lessons make her anxious.

If she’s had a cover teacher in the morning, endured an extra noisy assembly and the rain drove lunchtime play indoors, she is unlikely to be able to concentrate on a demanding task in the afternoon.

I’ve seen these ideas explained in various ways; The Spoon Theory being one and the ‘stress bucket’ which is filled by all the challenges you face. If there are too many challenges without enough recovery in between to drain the bucket, at some point there will be a challenge that makes the bucket overflow and that’s when the meltdown occurs.

Jo uses this strategy now – she imagines a stress bucket in her head with a little duck floating on it.  These days, the duck turns red as a warning sign that the bucket is about to overflow.  That is one very useful little duck.

So what can we learn from this – planning is everything maybe?

Each day we wake up with a certain amount of personal resource and we need to think about how we spend it. Sometimes the amount we wake up with varies. Some people rarely run out and others find it limits their life significantly. If we and the other adults in their lives can become consciously aware of this, it might help our children to enjoy life and the opportunities that others take for granted and reduce their social isolation.

With our support, over time, our children can take on more of the responsibility for this so that, as they enter adulthood, they understand what helps them and plan their own lives accordingly.

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