Moving forward with CoProduction, its time to #flipthenarrative. January 2019

Guest blog by Rachel Tenacious

I am writing this on the back of attending #CoPro19 this week, probably the best conference I have ever been to. The speakers were all amazing and singing from the same song sheet as me.

When you have been "That Parent", a "Persistent Complainer" and a "Vociferous Parent" for as long as I have it can start to feel like you are never going to get your voice heard, when you seem to be so opposed to the system and all that it stands for, it can start to feel that your voice is never going to be loud enough!

But guess what....... There are a whole lot more voices, like mine, they are getting louder and there are professionals on board too. I wanted to bottle some of them and bring them home.

After three and a half years of very successful home ed where we have been supported by a couple of professionals and have been on a learning journey with them, the time came for H to tentatively dip a toe back into "the system"

We were utterly determined not to put H back into a setting where they measure progress by attendance and test scores but ignore clear signs that the child/young person is falling apart. The course for home educated students seemed like a good starting point because it is a very short number of hours, it doesn’t start until 1.20pm and the staff have worked with young people like H who have been through traumatic times at school and those who had been outside the box for a long time [for ever in some cases].

The first true coproduction training I did was selective mutism training with Libby Hill when some of the professionals in the room said they had never been on a training course with parents. This was an eye opener for everyone in the room and we all came away feeling that this is most definitely the way forward.

I joined the Autism Working Group and Selective Mutism working groups in Walsall because I am passionate about sharing the message about coproduction, flipping the narrative and making sure that the families/child’s/young person’s voice stays at the centre of everything.

Flipping the narrative means we start to see the child as the centre of everything and use their ambitions and wishes as a starting point for developing their support.

We do not set targets such as;

"H will speak to 3 people by Wednesday"

In fact we have removed the need for H to speak at all pretty much. She has people around her who know what needs to be done and they don’t wait to be asked to do it they just do it. This frees H up to focus on just being herself and getting through her day. This removes a huge amount of stress from H and as a result of that she is quite often able to speak when she wants to.

The adults around H are not there to encourage, urge, cajole her into doing stuff, they are there to provide a cushion and a protective barrier to help her feel safe.

When the adults around H provide her with that protection she is safe to start to show us what she is capable of.

Recently H attended a meeting with us at college, after half an hour she was due to go to her support group. I reminded her of the time and her LSA offered to go with her but she said she didn’t need her to and that she would come back if she needed to for any reason because she knew where we were. One of the professionals in the room was utterly mind blown at her level of confidence to navigate a fairly busy area of the college independently.

I believe H has been empowered to do this because she knows that the support is there for her all the time and it doesn’t disappear as soon as she looks like she is "coping".

I took the opportunity to reinforce to everyone around the table that this has happened without setting one single target for H.

Trust is a very powerful thing. Our children and young people need to be able to trust that their supporting adults are just that and not just there to push them out of their comfort zone.

As I am gaining more confidence in my  role as " An expert team member" I have started to lead meetings, to invite who we need and almost railroad professionals round to our way of thinking.

Many have already worked in a team around the child type situation so suddenly finding themselves back in this situation is not too scary for them.

This is called Co-production and the aim is to put us as parents, children and young people on a level playing field with the professionals.  We know our children better than any of them, we spend every day finding out what helps and what doesn’t.

Now is the time to flip the narrative and start working from a point of what the child or young person can do and stop focussing on what they can’t. When we trust them and stand beside them they move forward at a pace that is right for them.

If you are interested in learning more follow these people on twitter for starters and get involved:

@gdmorewood   @elly_chapple, @StarlightMcKenzie ,  @AspieDeLaZouch,  @Andylowarousal,

@MsJoBillington

By Rachel Tenacious

  

                                      

 

A little bit about me, I am a late diagnosed autistic parent with three children aged between 30 and 16. H is my youngest child she was diagnosed with autism at age 9 and selective mutism at 15.

We removed H from the education system in 2015 after she had what we now know as an autistic burn-out.

The school system didn’t suit H at all but home ed has been amazing.

Since my diagnosis I have begun to share some of our experiences at support groups and am hoping to expand this out to schools, colleges and anywhere people want to hear me really.

What Teachers Need to Know About Teaching Children on the Autism Spectrum

When teachers view the behaviour of children on the autism spectrum through typical lenses, their view is often distorted. To teach children with autism you need to know autism inside and out to have the clarity that allows you to teach children the way they learn, to interpret what the child is communicating and to respond appropriately. Here are some helpful hints and tips to help school life be a more comfortable experience for the teachers, the child and the class.

1. The most important work thing is to build trust. Without that, they may be too anxious to do what is asked, Make every effort to win them over e.g. take notice of what they like or is important to them. Dinosaurs, space, Minecraft, learn about them so you have something to talk to them about and often use it to your advantage.

2. Many teachers have told me, they cannot give a child support because it would be unfair to the other children in the class. Explain to the class about autism and the extra help an autistic child needs to allow their other children to help support. This will teach the other children about autism, compassion and patience.

3. Never label a child’s behaviour “naughty,” “difficult,” “oppositional” or “rude.” You may not know the cause of the behaviour but if you understand autism and the child you can often work it out. If not observe, do an ABC chart this will provide you with vital information. There is always a reason behind the behaviour you just need to be patient and work it out.

4. Acknowledge the parents who have been raising their autistic child as knowing their child better than you do.

5. Find opportunities to raise the child’s stature in the classroom and the school. Is he great at magic? Let’s do a magic show! Is he an expert on dinosaurs? Let’s create an incredible dinosaur station and he can be the curator! He’s a great reader? Let him read stories out loud for the class

 6. The autism-related difficulties are not parenting issues. Autism is a pervasive development disorder, and that means autistic students may have some differences in every area of functioning across the curriculum. Executive functioning is often a weakness so try find other ways to help the child. E.G. visual representations.

7.Children with autism need patience and understanding. Give them that.

8. Teach children with autism the way they learn often this is visually.

9. If the child is having a difficult time, don’t insinuate or suggest there are problems in the home. Parents need my understanding and support, they have their child 24/7 and are often very stressed.

10.Celebrate the successes and the attempts and teach to the gaps in understanding and skill without directly pointing out mistakes. Demonstrate, model and practice until they get it.

11. I know that a lifetime of being corrected makes a child afraid to take a risk. Therefore, create safe and supportive environments where risk-taking is applauded. Let the children know that as an adult you get nervous taking chances, too!

12. If an autistic child tells you they are being bullied, believe them and act on their information. Sometimes they may feel they are being bullied when it is not bullying, explain it to the child with autism help them understand.

13. Many children with autism are tired — of course they are! A number of them have sleep disorders. They can’t settle down until late into the night. The diurnal rhythms of these children can be off by three to four hours, so they may be awake until well past midnight. If they are awake so late, it is no wonder they can be very groggy in the morning. Mornings can be tough on them, so watch what see what they are like first thing in the day. In the a.m., prepare lesson plans with preferred and alerting activities for those who need the extra time to be fully awake.

14.They often have slow processing speed. So, know that rushing a child who takes 20 seconds to process what you have said will literally slow him down and potentially make him anxious.

15. Autistic children may need help with organising, prioritising, managing their emotions, being flexible in their thinking, starting their work, coming up with ideas, remembering, and managing their time. These are brain-based differences. This is executive dysfunction. If you want a child to learn these things, you have to teach, not chastise and dictate what they need to do, but demonstrate the value of these skills so they master them.

16. I know stimming helps some of these children focus, regulate and/or manage anxiety. Never, shame or humiliate them by calling attention to their stim and insist they stop because they are bothering their classmates. Look for other ways they can do their stimming that is not disruptive. However, if this has been discussed with the class, I have found the children to be understanding and helpful towards the child.

17. If a child believes in themselves, they can do anything. Create opportunities for them to see their potential, and for peers to see it, too.

18. Consider the reality of anxiety. All roads can lead there: bullying, sensory overload, social alienation, slow processing speed, volumes of homework that seem impossible to keep up with. keep that in mind when creating lessons and homework for the children. Often homework is a bone of contention as they may consider school work to be done in school and home is different. As many do compartmentalise consider allowing them to do their homework at school. Maybe in a lunchtime homework club.

19. Don’t insist the need to look at you in order to pay attention to the lesson. In fact, looking away and doodling may be how they can pay attention. Often, they can look at you or they can listen to you, but not both. honour their sensory needs.

20. It’s hard for children to learn from teachers they do not like. If they like their teacher, they’ll have a good year. If they don’t, they won’t. How you treat the child determines if they like you or not.

21. Many children with autism have empathy — lots of it. Your cat died? He told you a joke to make you laugh because you look sad — not because he is cold and heartless. He may not know how to respond to what he sees or feels. That’s why it’s really important to create social/emotional development goals that can teach autistic children what to do in these situations. Don’t chastise or humiliate them for responding in ways that others feel are inappropriate. If there’s a clear gap in the child’s understanding, it means now we know what we need to teach it to them.

22. Being verbal doesn’t mean ASC children know how to communicate. Autism is a communication disorder, so try to find out what that means to each of your autistic students. Just because they are precociously verbal does not mean they can find the words to say what they need, express what they are feeling or understand all I am asking.

23. Many autistic children must be taught that 93 percent of communication that is nonverbal: facial expressions, tone of voice, body language, context. Work in activities that will help teach them that. These skills are so important in social success. E.g. My dog died the child with autism may laugh and this would cause upset. They are not laughing because they find it funny, they may not know how they should react appropriately. They may even find one of the words funny without understanding the context

24. check in for comprehension, not by asking, “Do you know what to do?” But by saying, “Tell me how you’re going to answer that question, Bobby.” And if Bobby is on the wrong track, don’t tell him he’s wrong, praise him for his effort and keep discussing until he understands.

25. Many people expect nothing of nonverbal autistic children (though many are bright) and too much of our highly verbal autistic children. Try working to understand the strengths and needs of them. I personally have worked with nonverbal children who are highly intelligent and understand exactly what you are saying to them.

26 let them know everyone makes mistakes. I will make mistakes. When I do, I will apologise to the individual children affected.

27. “No” can be a trigger for many children on the spectrum. Try and find a way to make them feel understood, and work hard to find a way to say, “Yes.” “Yes, Johnny. You want to play with the Lego. I will let you do that. First, let’s finish your math, then you’ll play Lego.” Finding another way to say no’ is not ‘giving in’ to bad behaviour. It is being mindful that this child feels less anxious when he or she has some semblance of control over the day, or when engaged in activities they feel comfortable and competent in doing. Use first/then visuals and schedules to help the child see when he can do his favourite things.

28. Be aware the ASC child who is a model student may have frightening meltdowns and express extreme anxiety at home related to the school experience. When social, sensory and academic demands become too much to cope with, the child will let it all out where it is safe to do so: with his family in his house. Give the child 15 minutes at the end of the day with something that relaxes them and helps them cope.

29. Behaviour issues are often a result of lack of training, lack of understanding, and lack of communication issues. Don’t tell parents their child was rocking in his seat, sitting at his desk not doing any work, or looking out the window while I was teaching the class. He has autism. He’ll rock to calm himself. He may not know how to start the work because he forgets the steps or didn’t understand the lesson, and he was looking out the window so he could pay attention to the lesson

30. Don’t wait for things to fall apart before you act being proactive is better than reactive for you, the child and the rest of the class.

31. Many autistic children do not like to be wrong, to be corrected, to be told they missed something, forgot something, or have to edit their work. Break work into small achievable chunks and check in for comprehension every step of the way. Teach the value of making mistakes and let them see you tolerate making a mistake.

MOST OF ALL ENJOY TEACHING THEM THEY HAVE LOVELY SIDES TO THEIR PERSONALITY AND CAN BE A LAUGH.

Collated by Karen Horner

Autism Consultant