..but publications and research by OT’s are needed to show ASI is effective!
Submitted by guest blogger, Ruth OT.
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.
Submitted by guest blogger Ruth OT
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.
This article by Clinical Psychologists Christopher Robinson and Alicia Madeleine Brown in the Scottish Journal of Residential Child Care includes a lovely environmental checklist (adapted from Simpson 2009) used in considering the physical environment in three children’s residential homes.
Abstract: Sensory processing issues are generally considered to be clinically significant in children who have suffered abuse and trauma and much has been written about the possible neurological correlates of such sensitivities (De Bellis and Thomas, 2003; van der Kolk, 2014). Comparatively little focus has been given to the functional aspects of these sensitivities, and particularly how these might interact, in context, with a child’s underlying neurological vulnerabilities. In this respect, the environment surrounding the child is a neglected area of significant, perhaps critical, importance. In terms of potential hypersensitivity to environmental stimuli, children with Autistic Spectrum Conditions (ASC), although with different aetiological correlates to trauma affected children, are known to face profound environmental challenges. Children with ASCs have received a wealth of attention in the literature with regard to these sensory challenges, whereas, in contrast, trauma affected children have received very little direct attention at all. It is the aim of this paper to focus on the environmental aspects of sensory processing in trauma affected children, specifically in relation to the physical environment of children’s residential homes.
from the Scottish Journal of Residential Child Care 2016 – Vol.15, No.1 Scottish Journal of Residential Child Care ISSN 1478 – 1840 6
When a person registers, processes and responds to sensory input we call this Sensory Integration (Ayres 1972). Sensory Integration happens when a person uses sensory input from inside their own body and from the world around them to understand the world, what just happened, is happening and what might happen next.
When sensory integration and development can’t happen like it should, sensory integration difficulties (sometimes called sensory processing disorder) can happen. This can mean that managing feelings, moving about, learning and getting along with others can be tricky.
It can stop a person learning the skills they need for everyday life – being organised, looking after themselves, joining in with others, focussing and listening, sitting still and even behaving in a way that makes learning possible and everyday life easier.
Sensory Integration makes it possible for people to successfully carry out all the activities that make up their daily lives. To do this the senses, nerves and the brain collect, filter and organise sensory information so it can be used. When the senses cannot be properly integrated or don’t work as well as they should, life becomes hard and some things are impossible to do.
Sensory difficulties interfere with being able to cope with feelings, get along with others, move about and do things like work, play, learning and being able to do self-care. In children, sensory integration difficulties can delay and hamper normal development and participation in home and school activities.
Hear Ryder’s story and how sensory difficulties impacted on his early development and learning.
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