Who Holds the Whole Child?
I have been thinking a lot about how much information parents are expected to carry when their children need extra support.
Not only the appointments, assessments, school meetings and admin, although there is plenty of that. It is the constant remembering that wears you down. Who has seen which report? Which teacher knows about the diagnosis? Which therapist suggested what? Whether the school has the latest concession letter. Whether you remembered to mention the medication change, the sensory issue, the sleep problem, or the thing that happened last week that may explain why today has gone sideways.
And somehow, without anyone ever formally giving you the job, you become the person who holds the whole thing together. I know this from more than one side. I spent many years in the classroom, including eight years teaching gifted children, many of whom were also neurodivergent, anxious, dyslexic, sensory-sensitive or simply too complex to fit neatly into the usual school boxes. I have also lived it as a parent. My son is twice exceptional, with ADHD, autism and dyslexia, and I know what it feels like to sit in meeting after meeting trying to explain to a child who is far easier to misunderstand than he is to summarise. When my son started varsity this year, I had to go back through everything to apply for his concessions. 20 years of trauma, stress, admin, worry and heartache filled 3 lever arch files.
That is probably why I have moved more into advocacy and parent support. I know how easily children get reduced to the one thing someone has noticed. The child who does not sit still. The child who will not write. The child who seems rude. The child who is “too sensitive”. The child who knows the answer but cannot get it onto the page. I also know how often parents are left trying to translate the child to the world, and the world back to the child.
Everyone has a piece of the story, but not always the same piece. A teacher may know what happens in class. A therapist may know what happens in a session. A doctor may know the medical history. An educational psychologist may have written the report. But the parent is usually the one who knows where those pieces overlap, contradict each other, or explain each other.
You start to develop a script. You know which parts to mention first, which parts people tend to misunderstand, which parts make you sound as if you are making excuses, and which parts you leave out because there is never enough time to explain the child properly. In some ways, you become the archive. Not because you chose that role, but because somebody has to remember where everything is, who said what, what was tried, what worked, what failed and what should never be repeated.
But if the support team aren’t engaging with each other, much of what you are saying goes into a void. Our children become a summary of clinical reports, and their unique, wonderful selves get lost.
Children who need support are often misunderstood in the gaps between people. One person sees behaviour. Another sees anxiety. Another sees avoidance. Another sees defiance. The parent often sees the pattern, because the parent is the one who has watched the story unfold across years, settings, professionals and school reports.
I met a dad who had been through it all, and as we parents do when it comes to our children, he looked for solutions and ways to make it easier for ourselves and others. He created a platform I would have given my eye teeth for, 20 years ago, when my journey began.
Most parents I know do not need another app for the sake of having another app. They already have enough platforms, enough logins and enough admin sitting in the background of their lives. But imagine having one place where the important pieces could begin to sit together.
The report that keeps being requested. The note about what helps when a child is overwhelmed. The update from the therapist. The detail that sounds small until somebody understands why it matters. The history that a parent has explained so many times, they could probably recite it while packing a school bag.
I keep thinking how different this would have been when my son was younger. One platform may not have solved everything, but because it would have given me one place to hold the information I was constantly trying to carry, send, explain and defend, it would have made it easier to share the right things with the right people, without starting from the beginning every time.
I am also very aware of how carefully this kind of information needs to be shared. Not every detail belongs with every person. Some information is practical. Some is sensitive. Some is only useful in a particular context. Parents know that better than anyone, which is why it matters that they decide what goes in, who is invited and what each person can see.
Reports are important. I have fought hard enough for the right reports, diagnoses, concessions and support to know that. But reports are never the whole child. They do not always explain why a child closes their eyes to listen, why a small change in routine can derail the day, why a child who seems rude may actually be overwhelmed, or why a child who cannot show something on paper may understand it perfectly well.
Those are the things parents carry because they have learned them the hard way. Dalza gives them somewhere to put those things carefully, and with the right people. I would still have had to fight for the reports, the concessions, the understanding, and the support. Of course, I would have. But I would not have had to keep starting over every time someone new entered the picture. That in itself is a huge burden, exhausting and frustrating as heck.
But when a parent is the only person holding all the pieces, things get missed. This has nothing to do with the skill or intention of each person on the team, but rather because everyone is working from their own small section of the story.
The child is the one who feels that gap.
If Dalza can make that gap smaller, even slightly, then I think it is worth paying attention to.
