“The government will collect evidence from autistic children, their families and their carers on how to improve the support they get… Supporting people on the autism spectrum or with learning disabilities is one of the 4 clinical priority areas in the NHS long-term plan…”
The Christmas season is a fantastic opportunity to get our little ones involved in some Christmas craft activities at home. For those of us short on time or ideas the shops are full of templates and packs that you can put together at home… here are some lovely craft ideas that have been sent to us by some of our families this year, paper chains, both shop bought and homemade, and a beautiful Christmas llama.
Don’t forget there is still time for you to win a copy of Love Jean by entering our Christmas time book give away. Share your Christmas themed sensory ideas with our community… by leaving a comment on one of our Christmas themed blog posts or on our facebook page … before the 15th December 2018
In my time as a special needs parent, I’ve had a variety of responses to telling people my child has special needs. Some responses have been great, others have left me crying all the way home. Literally. Some have opened up conversations, others have shut them down. I know that those people who have not been so helpful have just been looking for the right thing to say and found the wrong one. So here are some cues to think about what you’re saying. Remember when the parent says the “we think (s)he might have….” Or “(s)he’s got…” they are very vulnerable. They will have cried and fretted and lost sleep over the information they are giving you and they will be at some stage of processing that information. If they are giving you that information, they either need you to change the way you are interacting with their child, or they need to talk about it. Choose your words carefully to open up the conversation and hear what they’re trying to tell you.
Please don’t say: “(s)he seems fine to me”. I know you’re trying to be reassuring, but by saying this, you imply that you are more able to identify the child’s developmental needs than the parents and the professionals working with the child. It pretty much shuts the conversation down, but if it continues, you force the parent into the role of pointing out their child’s deficits while you defend them. This is not a natural way of things, the parent spends enough time pointing out their child’s deficits with professionals, you need to enable them to big their child up and point out what a wonderful person they are.
Say instead: “I hadn’t noticed. What’s going on?” By saying “I hadn’t noticed”, you can reassure the parent that it isn’t that obvious, but also put yourself not the parent in the position of the person who needs educating about the child. You open up the conversation, and you give the parent the choice about how much information to give you, they might just tell you a load of assessments and appointments or they might tell you what the child is struggling with. It’s up to them.
Please don’t say “I couldn’t do it” the truth is you could. Of course, you could and a whole lot more, if that was what your child needed. Don’t point out how lucky you are that you don’t have to. The parent might well be wondering whether they can do it, and how long they can keep doing it for, they need you to reassure them that they can keep going.
Say instead “I really admire the way you’re doing it” This way, you’re complimenting the parent, you’re recognising how hard they’re working but you’re not sowing that seed of doubt that they might not be able to keep going.
Also, say “how can I help you do it?” they probably won’t know, but they’ll really appreciate being asked. It might be as simple as “watch my child while I have a pee in peace”. Do that. Then offer to do that again, don’t wait to be asked.
Please don’t say “(s)he’ll catch up” (s)he might well not. People were telling me this when the doctors were telling me she might well steadily regress. It wasn’t reassuring, it was frustrating. Again, it puts you in the position of the expert over the parent and professionals and the parent in the role of pointing out the deficits. Parents do not want to point out their child’s deficits, please don’t make them do it. Please don’t encourage the parent to compare their child to typically developing children, the only person a child needs comparing to, to track their learning is themselves.
Say instead “what does (s)he really love doing?” Give the parent a chance to gush about their kid, what they love, how much fun they are etc. Most parents will leap at this chance, it’s so refreshing after appointment after appointment telling professionals what their child can’t do.
Please don’t say “is there a cure?”The child may well not need a cure, they’re probably not ill. If the child is ill and there is no cure, they really won’t want to keep repeating that and if they know there is a cure, they’ll be doing it. Trust me, they will have researched treatment options very thoroughly.
Say instead “what are you thinking about for the future?” Again, keep it open. The parent might be trying really hard not to think about the future, they might well be taking one day at a time or they might be able to think of nothing else. They can choose how to interpret “the future” in your question and might tell you about getting them to eat just one more type of food or school support options, or they might be racing ahead to adulthood prospects.
Please don’t say “have you tried…?”again, you’re putting yourself in the role of expert with this one and the parent in the role of person to be taught how to raise their child. Unless you’re really actually a professional expert in what you’re suggesting, and you’ve spent time really interacting with the child, please just don’t.
Say instead “what do you think might help?” A parent who thinks their child has some additional needs will have done very thorough research, trust me. Give them time to talk about what they’ve learned. They might say “nothing” and then you’ll feel really awkward. Live with that, they feel awkward a lot of the time. They’ll probably tell you things that have been suggested and why they think/ don’t think that’s any good. Listen.
Please don’t say “you won’t want to come” Don’t presume, parenting a child with additional needs is isolating and exhausting. They might say no. Don’t be offended if they do but give them that option.
Say instead “I know (s)he finds this difficult, but I wanted to invite you in case you think they’d like it” Invite the child, acknowledge that it might be hard for them and they might want to say “no” and that’s OK, but make sure they know you want them there and you value time with them.
Please don’t say too much in front of the child.Remember they may well understand more than they can say and for any child seeing their parent upset is confusing and frightening.
Say instead “how am I best to communicate with him/her?” Then get down on the floor and do it. Playing with a child, talking with them on their level and really getting to know them is the biggest compliment you can pay the child and the parent.
My biggest advice if someone is telling you their child seems to have additional needs or a developmental difficulty is to listen to them, make them feel validated, treat them as the expert on their own child and don’t belittle their experiences. Your role is not to fix the child, you can’t do that. Your role is to support the parent, build their confidence and to be their friend.
Supporting development is everyone’s business. If you are a therapist practicing Ayres’ Sensory Integration, parent education and support between sessions with sensory rich activities to support development through ploy is likely to be a part of what you do. The resource includes downloadable printable activities guides for different ages, that will make great handouts for parents and teachers. Another great resource from Harvard..
Parents bringing their children to therapy are dedicated – no matter who is funding the therapy. A weekly commitment to therapy sessions while juggling family life will test even the most organised Mum or Dad’s diary and working day. Fun easy to do activities that can support therapy and provide ideas for what to do when the ideas run out are a bonus.
These activities in this resource from Harvard are just so much more. Research has shown that this collection includes age-appropriate activities and games that adults can use to support and strengthen executive function and self-regulation skills in children.
Our daughter recently appeared on a UK Kids TV show called Something Special. I was ridiculously excited about it and told lots of people who never usually watch CBeebies, the BBC children’s channel, that they just had to see her.
Filming was brief but exciting. We got to meet Justin briefly (one child was very disappointed Mr Tumble wasn’t there too) and the team were genuinely very lovely.
Some of the people who would never normally watch CBeebies were surprised there is a programme which exclusively features children with special needs and/or disabilities, they felt that pointing out the difference wasn’t kind and the kids should be encouraged to blend into a typically developing world. This was a good opportunity to explain how the show “Something Special” had helped other children to understand the way our girl supports her speech with signing and to not be phased by her difference. We’ve often heard comments like…“oh look! She signs like Mr Tumble does!”.
Then a friend asked what I thought of “Pablo”, another CBeebies programme about a little autistic boy and the imaginary world he creates to navigate the confusing things around him. Of course, I had to investigate. I watched a little video of the autistic boy who plays Pablo explaining that he thought it was important for other children to understand autistic children so that they would want to play with them and that Pablo helped that, and I was ready to investigate.
So, I sat down with four kids to watch. The 8 and 10-year-old exclaimed in unison “Oh, I love Pablo!” so of course, I asked them what the show is about “a little boy with a really good imagination who draws stories about things”. Fair enough. And so we all sat and watched the show together…
In the episode, Pablo and his mum are going about really everyday things (cleaning a bin in the first one we watched) and Pablo’s mum uses a phrase he doesn’t really understand to explain what she’s doing. He knows he mustn’t touch the “smell gobbler” but doesn’t understand why. Pablo draws his fears, in this case, he is concerned that the “smell gobbler” might eat his own familiar safe smell which he likes and then what would he do? He and the cartoon characters that represent aspects of him, problem solve it and trap the “smell gobbler” under the laundry basket. Mum comes back and is amused to find her air freshener trapped.
I actually loved the show. The kids who told me they loved Pablo hadn’t spotted that he’s autistic (the 8-year-old is usually quite a diagnostician) and yet they loved that he has such a really good imagination. watching the show together opens up a way to talk about autism with her and how her autistic sibling and friends might see the world a bit differently. It touched on the sensory differences that can come with autism and the importance of sameness for people with autism and modelled a useful way for children with autism to reason through problems and confusions they encounter.
I have a speech therapist friend who is very keen on creating comic strips with children as a method of problem-solving and reasoning through situations before they happen. I could do that or I could just let my kids carry on enjoying a funny cartoon about “what if we really meant exactly what we say?”.
It’s my job to watch what my kids are watching and use it to start those conversations with them. I’m so glad these programmes give us a platform to start that.
I meet so many parents who are concerned about their children’s motor or sensory processing skills who tell me their child never 4-point crawled, or did so only briefly. They proudly tell me how their child was ahead of their motor milestones and walked early, and never realise how important crawling is.
What is so special about crawling?
In crawling, the baby supports their weight on their hands and arms, this works wonders for developing shoulder girdle stability and proprioceptive awareness of the hands and arms which is foundational for fine motor skills like handwriting, fastening clothing, threading, sewing, crafting etc. Crawling also requires the baby to hold their core flat and stable off the ground, developing core stability against gravity. It also puts the baby’s neck into extension (ie bent back so that the baby is looking forwards not at the ground), this activates areas of the brain stem and supports baby’s developing understanding of their relationship with gravity and thus vestibular processing.
But what good is telling you all this now if your baby wasn’t a crawler? My youngest child was a very proficient bum shuffler, he could get anywhere over any surface (but not steps!) very quickly shuffling along on his bum. If I put him into the tummy time position, he just laid there and cried until I sat him up. I knew crawling was important for his development and that bum shufflers are late to walk, but I couldn’t make him do it once he’d learned a really efficient way to get where he was going!
So now that he’s a confident walker, we’re going back to crawling activities, and I thought I’d share some of the activities we do without any extra equipment at home to get those crawling benefits…
Going back to crawling…
Climbing! There’s a lot of motor planning and problem-solving in this as well, depending on where you climb. Over rocks, up muddy hills, up slides (you will get looks from other mums), in soft play, anywhere where they need to use their hands to support their movement is good by me
Cars and small world toys- some kids I know will squat down on their feet and use their hands to play, if this is your kid try setting up a small world where the kid has to reach far enough that they have to support their weight with their hands to reach the middle.
Big floor art, floor puzzles etc. We love messy art at the best of times, but if you can get a roll of lining paper on the floor to do your art on, you can work on shoulder girdle stability, prone extension and motor planning while you do it.
Tunnels, those pop up tunnels you can get for kids are great for encouraging crawling (you can’t bum shuffle through one, we speak from experience!)
Ball pools, he loves falling face first in them and then crawling back to standing up.
Ditch the train tables, lego tables and tuff tray stands. I know they make tidying up easier and are more comfy for parents, but playing on the floor is about so much more than the game.
As I read the recent article “14 Phrases Kids Said That Were Code Words for ‘I’m Anxious“ from The Mighty, It felt familiar – like I had met every one of these responses to anxiety and not just from children.
“What’s wrong with me?”… “I’m tired.” … “Can’t we stay home?”
“I don’t feel well.”
Anxiety affects so many people and they are not all confident naming and talking about it. Some may know they are anxious but be embarrassed about telling people, for others, it may be that long-term anxiety is new to them and they haven’t really grasped that the physical symptoms are related to their anxiety.
So how does anxiety play out in real life and how can we help?
The elderly lady who has had a reduction in her mobility now feels sick when she goes in the car (but her doctors can’t find anything physically that would cause this), may not understand that her body and brain has become accustomed to less movement and so is less able to integrate vestibular stimulation with other sensory stimulation hence she feels sick now avoids leaving her chair for fear of some as yet unidentified illness but is embarrassed to say she feels scared. Her fears about illness then generate yet more anxiety symptoms e.g. Feeling sick racing heart and more, confirming that she really has got some mystery illness that the doctors are missing, so she avoids leaving her chair whenever she can. This leads to a further loss of integration between her senses as she is not moving much (vestibular) and she is not using her muscles much (proprioception) and will eventually lead to loss of function.
Or that friend who is always tired or busy when you want to go out (there might be other reasons) and cancels at the last minute. But to be honest, as a mother to a lovely but anxious young lady it is the young people who concern me most
My concern for young people is driven by the knowledge that the young brain is primed to learn (Jenson 2015)… And learn it will – either good things or less good things, so if like the elderly lady the young teen avoids activities there is a good chance that these coping strategies will become an ingrained life pattern.
So what can we do to help?
First get to know the symptoms of anxiety there are numerous self-help books and Web pages e.g. The NHS Web site, Web MD, mind etc.
Second help the young person to choose activities that are likely to reduce anxiety… From a sensory integration perspective, these are likely to be ones that involve heavy muscle work and muscle stretch (proprioception) and ones that make the young person think like Martial arts, dance, rock climbing gymnastics etc. Will be better than just proprioception alone. We do dance and acrobatics.
Consider 1 to 1 tuition if they need to gain skills to catch up with their peers… But if you do this it’s good to plan to reintegrate the young person into group lessons… So that they can deal with social anxieties. We went to a group lesson and it was clear my daughter had a lot to learn so we had a year of individual lessons (and still supplement the group lessons with the occasional individual lesson). But then we went to group lessons, it took half a term but now she is enjoying doing acrobatics duets which brings me to my next point.
Make sure the young person attends regularly and on time for a good chunk of time…..
Be prepared for ongoing anxiety and be firm that they go… My daughter frequently tells me on the way home “oh sensory mum you’re right I do feel better.“
Try to avoid surprises… We have a wall planner for the term and all activities are written on it… And I have noticed my daughter (and I am) much calmer knowing what needs to be done and when.
Discuss and consider professional help… Some Ayres’ Sensory Integration trained occupational therapists use other techniques in conjunction with their sensory integrative therapy, others will work alongside mental health professionals and for some people, Ayres’ Sensory Integration therapy will be enough on its own.
You may also decide to work through a self-help book and this can be a good option… But if in doubt always consult with your GP or/and any other health professional who is working the young person.
So what about those adults… Its a little different to the young people but listening and understanding or trying to understand is a good first step. Giving them information about sensory integration and mental health issues can also be helpful. Then asking them what they want you to do and staying in touch with them even if it’s difficult. And always remember it’s never too late for someone to get help.
Reference The teenage brain by Frances Evans Jenson. L
“It is so important not to be defined by tragedy, to be shaped by it but never defined by it” Amanda Holden – Britains got Talent
How can meaningful occupation and occupational therapy be useful in healing and recovery from trauma? and why should occupational therapists be trauma-informed?
This morning I was sent this video by a friend, I found it really powerful because not only is the story in itself one of beauty and empowerment but also because it ties together everything I have learnt this year about the use of meaningful occupation in both physical and emotional healing.
This incredibly moving dance routine was choreographed to pay tribute to the victims of the Manchester bombing.
The video tells the story of Holly whose aunt was killed in the attack. Like so many of the children who were at the Manchester arena that night, Holly has experienced both physical and emotional trauma. Physically, Holly broke her right knee, he left leg and foot was broken, she suffers from nerve damage and must use a splint to be able to walk. Holly has already had eleven operations to help her recover physically.
An occupation that had been meaningful to Holly before the attack came to play a central role in her recovery. Only a couple of days after it happened Holly was asking the medical staff…”When can I go back to dancing?” Dancing is meaningful to Holly, her mum describes it as being “everything to her”.
Because of the damage to her legs, returning to dancing may have seemed like an impossible goal for Holly. Through returning to dancing Holly has been empowered to shine, to show incredible bravery facing what, I can only imagine, are her worst fears in returning to a venue similar to the one where the attack happened. Social isolation is a real risk for survivors of trauma and those with physical disabilities, however, through grading and adapting the occupation and a desire to keep Holly dancing as part of the team the choreographer has done an incredible work in valuing Holly’s presence and contribution. It is a beautiful example of the importance of meaningful occupation and social inclusion in both physical and emotional healing.
For me, this video summarised the answer to a task I was given this year by my lecturer Sarah Bodell (OT)…
“Find a way to explain how occupation links to health and wellbeing, I want you to tell them this…What you do affects how you feel...”
The ASI Wise lecture team have been at Abbot’s Lea School in Liverpool this weekend with a fantastic group of committed and enthusiastic occupational therapists, speech and language therapists and teachers exploring the use of sensory strategies and Ayres’ Sensory Integration therapy to support children, young people and adults mental and wellbeing health.
Experiential learning opportunities, embedded into the course, help participants to understand their own sensory systems and to experience the challenges that the people they are working with face on a daily basis.
With a mixture of classroom-based and hands-on practical learning, participants explored how to use the spaces and environment available in both school and clinic to support regulation and praxis. The workshop provided an opportunity to hear about the theory and practice of Ayres’ Sensory Integration, it’s application supporting those with autism, ADHD and dyspraxia, with up to date research and evidence supporting practice.
To find out more about our courses and learning here
We are so grateful to Abbot’s Lea School who have allowed us to use such a beautiful spacious venue. The three lovely well-lit rooms allowed us to create a pop-up sensory clinic, where participants had space to move about; extra room to break into groups supporting learning and the sharing of ideas. The school staff and local therapist volunteer support team have been incredibly welcoming and supportive, helping the workshop to run smoothly. As a bonus, the sun has shone all weekend which has allowed us to use the outdoor spaces, we have spotted a few daffodils and blossom trees around the city – it feels like spring is on its way.
Thank you to our volunteer therapists who helped to make the weekend such a success.
In this study, the researchers were able to suggest that there are “frequency specific alterations in the driving of information flow from brain areas implicated in social information processing during the viewing of naturalistic dynamic social images in toddlers and preschool with ASD” and that these occur in the early stages of ASD. These findings support the clinical experience of OT’s and others doing ASI with this client group, that early intervention is critical. The study continues to recommend further studies into social orienting skills as a way of perhaps remediating social brain development while neural plasticity is most optimal.
Wouldn’t it be great if the results we see in clinical practice of ASI, helping children better orientate, attend and respond to sensory input including social cues, studied as a possible intervention in response to this study?
Here is a copy of the abstract and link to the full article.
Social impairments are a hallmark of Autism Spectrum Disorders (ASD), but empirical evidence for early brain network alterations in response to social stimuli is scant in ASD. We recorded the gaze patterns and brain activity of toddlers with ASD and their typically developing peers while they explored dynamic social scenes. Directed functional connectivity analyses based on electrical source imaging revealed frequency specific network atypicalities in the theta and alpha frequency bands, manifesting as alterations in both the driving and the connections from key nodes of the social brain associated with autism. Analyses of brain-behavioural relationships within the ASD group suggested that compensatory mechanisms from dorsomedial frontal, inferior temporal and insular cortical regions were associated with less atypical gaze patterns and lower clinical impairment. Our results provide strong evidence that directed functional connectivity alterations of social brain networks is a core component of atypical brain development at early stages of ASD.