I like to use an analogy to describe what happens when someone develops an “eye” for invisible “needs” in children with SEND.
It is the “harder to spot” needs; those that come with the honing of skill, understanding and experience.
I use the analogy of “disappearing ink.”
Anyone who played at spies writing secret notes when they were a kid using ink made from lemon juice will understand the analogy.
What is there; the “intel”; can only be seen once heat is applied to the paper.
Some may have tried ultraviolet light. The organic juices alter the fibres of the paper so that the secret “intel” turns brown faster than the surrounding paper when exposed to heat.
What if “invisible” needs in SEND children are akin to the invisible ink? What if the secret “intel” can be made visible by the application of a bit of “know how?”
Can it be done? Is there a formula for rapidly “spotting” those “hard-to-describe” “hard-to-pinpoint” behaviours and indicators that often defy the process of “early identification” in mainstream schools?
In my travels as a SEND trainer and advocate I have met hundreds of parents of children with so called “invisible” needs. Parents of children with an Autism spectrum condition in mainstream provision will often fall into this category.
Depending on the stage of their child’s development, the parent will be further or lesser ahead in configuring the constellation of traits, difficulties and strengths that form the picture of how the child presents with Autism.
Many will describe to me a fraught and difficult journey, piecing together the bits of the puzzle of what came before and what is their “now.”
The parent slowly gathers “intel,” often by the pooling of knowledge and resource that occurs via online groups and completing the detective work of why’s what’s and how’s.
This is “intel” that might have given the “code breakers” a run for their money. Rather like a join- the-dots puzzle- only there’s millions of dots. Which ones do you join? Why would those 2 dots go hand in hand?
This is what it’s like when a parent of a child with ASD is at the first leg of the diagnostic journey.
The challenge is there is little in the way of a blue print. Yet the parent will mostly figure it out. The parent may not know the “wording” for describing each and everything they see and live through, if such professional terminology exists, but the “intel” is there.
The “intel” is there
Which is why when you give that parent a working tool that is visual, well designed and easy to use, it’s like shedding UV light on the “secret paper:” a full picture of the child’s “needs” shines through.
That is the pivot point.
It’s a pivot point where all the “dots” join and “make sense”. A pivot point where the appropriate support to remove barriers to learning emerges.
Rewind back the time machine. The year is 2016.
And I am, as usual, inundated with requests for help from parents in my role as a volunteer desperately trying to make sense of the SEND jungle they have inadvertently been thrown into.
No one gave them a manual when they entered that labour ward explaining how to parent a child on the autistic spectrum/ adhd/ other “invisible” disability.
No one handed a manual either on how to effectively fulfil the roles of “SEND provision manager/ SEND law advocate.”
I am both a parent to a child with autism and a SEND training consultant with considerable legal knowledge. I signpost, advise, explain and support where I can in my role as an advocacy volunteer.
Time is everything in SEND. Early identification and intervention is key.
Then a lightbulb moment came. I began thinking of ways I could hand over as much of my knowledge in a little bag. I desperately wanted to create a tool that could capture in ONE image; in ONE snapshot, as much of the breadth and depth of S.E.N.D as is humanly possible in an easy-to-use format.
Could I combine my SEND skills with my illustration skills to create a tool which helped people understand what needs are, how they correlate, how they impact and how to describe them? Could I give SEND parents “a helping hand in a bag” so that they could effectively begin to help themselves?
I set about sketching everything I saw going on around me. It was rough at first.. I shared my initial workings with SEND parents and professionals in my immediate circle. It was met with excitement.
With an emerging idea of what was required and what was left to do, I began to grow the tool further, sketching out the most common needs that were described to me by parents of SEND children in mainstream schools. . Slowly, growing the tool by listening to the stories of those I help at the frontline, I extended it to encompass as many umbrella areas of need within the breadth of disability as is humanly possible to condense in a pack of cards
If you are interested in learning more, the finalised toolkit is below:
The concept of parents being experts in their child is not only present in the SEND code of practice, it also relates to the very first clause in the statute that opens part 3 of the Children and families Act.
Note that it is not an opening clause about schools, SENCO duties or OFSTED requirements; but of LISTENING to parent and young people’s views.
“a local authority in England must have regard to the following matters in particular—
(a)the views, wishes and feelings of the child and his or her parent, or the young person;
The SEND code of practice further stipulates in para 5.5 that,
“All those who work with young children should be alert to emerging difficulties and respond early. In particular, parents know their children best and it is important that all practitioners listen and understand when parents express concerns about their child’s development.”
Do parents have the tools and skill to be “alert to emerging difficulties?”
In my experience, if you give them the visual tools to do this they can do this extremely well. Parents KNOW when there is something amiss that is “invisible.” They may not know the professional term for it or how it fits into the constellation of other difficulties, but they KNOW something is amiss.
A parent of a child with an “invisible” SEND condition is a tremendous source of knowledge and information on how the child presents.
Nowhere, is this replicated in its detail, depth and breadth. No other person can ever replicate the sheer number of hours in experience that parent will have clocked up during their child’s life.
That 360-degree knowledge that a parent has of their own child is freely available; if you will take it. All it takes is giving the parent the right tools to facilitate the process and the “fountain of information” will come out.
I have found the following approach useful for co-producing provision with parents:
- Use visual tools.- Cartoon illustrations help enormously to condense the essence of a “need” into a “scene.” “One image is worth a thousand words” is not just an adage; it’s true. The human brain will absorb the meaning of an image far quicker and retain far more than when reading 2 paragraphs of words. Images provide a powerful, effective, much-needed springboard for discussion on the presenting features of “needs.” From this; you generate a truly individualised picture of the child; which informs solid planning and provision.
- Give the parent tools to understand the words professionals use. Jargon is a needless barrier to understanding. Remove it.
- Help the parent to make connections and “join the dots”– How do the “needs” link together? How do they impact on one another?
- Work together until the full picture emerges. – How does this translate into provision? What planning can be put into place?
- Seek or signpost the parent to the SEND IAS service or expert legal SEND charities out there that give free legally based advice. See my recommended links at the foot of this post. Their work is truly inspiring and remarkable. And it is there.The legal thresholds for accessing EHC Needs assessments are very clearly laid out in section 36.8 of the Children and families act and yet misconceptions and myths about when children are entitled to an EHC Needs assessment appear sadly common. Such misconceptions cost time for a child in need of specialist support.
- Risk. Explore how the needs combine to present risk, including risk to mental health.
Risk to mental health, in my experience, is too often overlooked. Children with mental health problems, do not ordinarily wake up one morning aged 12 with mental health problems! There are often indicators, often unidentified needs preceding the crisis stage. “Crisis” can present in many forms, It can include behaviours not seen at school and a severe pathological aversion to attending school.
- Build trust with the parent. If you listen and have regard to their views; I guarantee your efforts will bear fruit. This is how you make a difference.
For recommended free SEND legal advice – click here