This is the ultimate idealised post. While every other post in the series I can pretty much stand over as what we’ve done, fairly consistently, this is a serious area of weakness for me.
In fact, I will demonstrate later on how just last week I failed to follow my own advice…
When your child is diagnosed with Down Syndrome, or another developmental delay, then you are faced with the world of appointments, therapies and statements of special educational needs. While we – generally – have found the free provision available to us through the NHS, educational system etc to be good, unfortunately the administrative processes around it all and communication with parents can often lead a lot to be desired.
You need to be organised to stay on top of it. When I looked for tips and guidance though on how to do this, there was none. So I've written this in the hope it helps some others!
As someone who struggles with life admin and being an adult, I have had to work so hard to just tread water in this area. I’m sharing today some of my top tips. Maybe for you organisation comes easily, but if not and you have any other tips that could help me or others, please PLEASE join in!
I started Daniel’s journey very idealised. I had a huge project divider notebook that I took to appointments. Each section was for a different speciality (so there were sections for cardiology, ENT, respiratory, haematology etc) and after I’d come out of an appointment, I’d write down a few bullet points from that appointment of what the doctor had said, what the treatment plan was for the next period and when they wanted to see him next.
For therapy appointments I would write down the ideas or exercises the therapists had given me to work at at home, which I did in conjunction with stuff from my DS books (check out DSE International’s books on Gross Motor Skills in Children with DS etc)
When I got home I would then transfer the “when they wanted to see him next” info into my diary but a month before that date, so if they said six month review, I’d write in five months time in my diary something like “one month to cardiology review”. Then if a letter wasn’t in at that point, I could phone the waiting list/appointments team and check he was on the list for the next run of letters to go out.
But like all my good intentions I started to slip behind. I forgot the book for one appointment and didn’t write it up when I got home. I went back to work after my maternity leave and my days off to do appointments became rather frantic.
I still think this is a fabulous idea. But it didn’t work for me longer term.
Now I have a more simple system. I have a hard copy diary for each year. All appointments go into this. It also has to-do-lists for each week so I can add advance tasks to a specific week. Following an appointment, I tend to send the info from an appointment in a whatsapp message to my husband with some text in it that is easily searchable. Again, this is far from consistent but it’s the aim. Then I just keep a note of when the appointment would be overdue e.g. third week of October by writing it in my diary and I add it to my to-do list if the appointment doesn’t come in. Colin and I divvy up the chasing of appointments. The particularly urgent and important ones he does. That way they’ll get done!
So, to my story of when I failed, just last week. Daniel had his first speech and language appointment with his new therapist who specialises in children with hearing difficulties. Daniel was fitted with hearing aids in January and they told me they would follow him up in several months to see how it was going [as an aside, I’ve been very surprised at the serious lack of contact we’ve had – literally apart from two phonecalls from a teacher for the deaf who is Daniel’s contact in the school system, we’ve not had anyone from audiology phone or anything. Seems very hands off]
So here we are 5.5. months later and there has been no follow up appointment or hearing test and no appointment has come in. The SLT was very surprised we’d had no contact and said Daniel needed to have a follow up appointment. I came away feeling bad as I’d known it was overdue but had not yet chased it. So naturally I came home and made all the appointments I knew were overdue, including the dentist! Anyway, I’ve chased it and he’s on September’s list and we can’t speed that up. Disappointing and I’m annoyed with myself for not getting it actioned quicker as the results of that are important for the new speech therapist to have.
Have a master list of all the specialists that see your children, write down their secretary’s phone number if you can get your hands on it! I have a list on my computer and one copy of that printed out.
Jot down on this, or a notebook (I use the back of my journal) when you contact them and what happened e.g. “spoke to Richard in waiting list team on 3/6/2018. Will get a call back next week.” – records are always useful and vital for things like getting adequate support in school.
Split the work
If you have a partner, share the load. Generally I lead on Daniel’s therapies as I do them with him, and his medical conditions as I attend many appointments alone. Colin takes the statementing process (ensuring Daniel has an up-to-date and adequate Statement of Special Educational Needs). It has also allowed us to specialise. Colin is much more in tune with the legislation around education provision and requirements. I’m more up to date with, for example, the NICE guidelines for treating hearing loss in children with DS, and know the names of all his consultants and therapists.
As always, when liaising with these various professionals (particularly in the provision of additional support at school) you need to be so persistent but try not to lose your rag. I think most mums of children with SEN though have cried on the phone at some point, and sometimes the tears do get through to the people on the other end. I’m not advocating them, but know it’s ok to sometimes not be able to appear cool, calm and collected. Tears are part of any parenting journey but particularly when your child has special needs!
As mentioned above, it helps to have a hardcopy diary that you write all appointments in to. Each time you have a new DLA renewal to do, you can then sit down and have all the dates at your fingertips. For reference, in the fairly small section on your child’s professionals and when they last saw them, I do a cross reference to an additional document listing every professional Daniel has seen and all the dates they’ve had. It really helps to build a picture for your DLA form as to the extent of the appointment and therapy schedule if they see scores of dates written out.
If you have regular orders to be done, like for repeat prescriptions or nappy orders work out a system that works for you. We have a whoever takes the last box out of the cupboard rule. If that's you you immediately put an online repeat prescription on for the medicine (some like Daniel's low dose antibiotic are on a four weekly run but his drink thickeners are used up at differing speeds so there's no set date I could use for that.
For nappies, when I place an order I count out the twelve week date I can next order and write it on my to-do list on my diary for that week.
Have you any top tips for keeping yourself organised with a child with SEN? Please share with us all!