I have met some pretty awesome women on my journey with Marigold. Laura is one of them. We connected through Unique (www.rarechromo.org) over a year ago and since then have enjoyed a friendship based on our beautiful unique daughters, shared acquaintances, 80s trivia and our knowledge of the borough of Croydon.
Laura is mum to Martha, who has Jacobsen Syndrome. She’s also a part-time freelancer and Masters student. All that work makes it hard for her to keep track of Martha’s achievements and medical schedule (we’ve all been there). So she’s building an app. Something I very much wish I could have had access to over the past two years of trying to track Marigold’s progress. We were chatting about the stress of ‘milestone counting’ and I asked her to write a guest blog about the app and the thinking behind it. If you would like to help Laura with her app you can fill out this quick survey.
A friend once told me that he couldn’t imagine life with a baby. I told him to take his alarm clock and set it to go off every 15 minutes. Every time it sounded, he must stop whatever he was doing and move onto something else. At least that would give him a rough approximation of the experience.
If someone asked me what it’s like having a child with special needs, I might tell them to do the same thing, with one addition, they have to remember everything they do and see.
At the end of the day they should be able to tell me exactly how much water they drank, how much food they ate. How many times the doorbell rang, the details of their struggle to parallel park the car, the exact emotions expressed by the muffled voices of their neighbours through the wall, the number of times someone walked past their window, the colour of the courier’s socks and whether she was left or right-handed.
Caring for a child with special needs, especially one with a rare syndrome, is in part an exercise in observation. You are a detective for your child, evaluating every tiny response and movement.
Was that coughing while she was drinking reflux, or did she aspirate? Exactly how many millilitres of milk did she lose when she vomited? Was that movement of her arm an attempt to reach across her own body? How long did she stay in the quad position? When she looked me in the eye was she trying to tell me she wanted more?
Since Martha joined our family I have developed the detecting skills of Sherlock Holmes.
Unfortunately I am not blessed with Mr Holmes’ impressive recall. My ‘mind palace’ is more of a leaky garden shed. And all this stuff is important information for her therapists and many medical specialists. Each new one wants a full rundown, starting as far back as my pregnancy. Every time we do it there’s more to remember and I find myself experiencing performance anxiety in front of our new consultant in immunology, or endocrinology, or whatever other variety of ‘ology’ this month brings.
So, I decided to build an app to help me remember all of Martha’s milestones and look out for new ones. An app that is designed specifically for children with special needs – because managing to notice the fact that they just started walking (pretty much the only milestone I can remember from my first, typical child) just doesn’t cut it.
My project has two ambitions. The app itself will be both a memory aid and education tool, helping a parent to record and better understand their child’s development. This could also allow them to carry out a kind of relaxed ongoing trial on their child. Have a look at ‘n of 1’ theory if you are interested in this concept. In essence the app might help a parent to see which therapies and medications are actually affecting their child’s development.
The bigger ambition is of course ridiculous, but hey, what have I got to lose!
Many parents and carer’s like me find solace, support and friendship on online forums. Helen and I met on one of them, and recognised a kindred spirit. Participants constantly exchange stories about their unique children, often asking complex questions and receiving many responses. Rarely are they seeking a definitive answer (you learn pretty quickly that there are very few of those). Instead they are trying to build a more expansive picture of their child’s development by querying the amazing organic database that is Facebook.
Receiving this support was a powerful experience for me. During difficult times my world felt as though it was closing itself around Martha and I, but accessing that outpouring of information had the power to make it bigger, brighter and a damn sight easier to breathe in. It was as though a tiny sliver of light narrowly focussed on me suddenly expanded, and what had felt like empty blackness around became filled with light, possible scenarios, and helping hands reaching out.
It occurred to me that this app could achieve something similar. With enough people using it and allowing their (anonymous) data to be processed centrally, over time you would surely start to see patterns? You could start to build developmental profiles for different conditions, or see parallels between them. You could compare your child’s development to that of children with the same or similar conditions. Sure those profiles would be fuzzy around the edges, there would still be no definitive answers, but as a community we’re used to that.
Most importantly the app would harness something that is increasingly recognised as one of the defining factors in the lives of children with special needs – the knowledge and skills that their parents hold. I can’t count the times that a doctor has told me that I am a bigger expert in her condition than them. Their reliance on my knowledge is sometimes a frightening responsibility.
Parents are already sharing vast amounts of knowledge with the special needs parenting community on sites like Facebook. Maybe this app could help that process for the good of beautiful, unique children like Martha and Marigold.
If you would like to be involved in this project please complete these 20 questions. I have now handed in my project to my tutor. Oh yes, late nights and flashbacks to panicked essay writing in the 90’s have characterised the last week of my life. So this is no longer just about getting a good grade. So many people have been so positive about the idea that I’ve decided to try and do it for real. Your answers in my survey will help to build an app that is designed just for parents like us.
You can follow Laura Woodroffe on Twitter on @senmilestones.