I am pretty much 100% sure that every parent of a child with special needs has bundles and bundles and bundles of paperwork for their child and that that is an understatement. This is certainly my situation. I have more folders for Freddie than I do for my work, my other children and the household management combined. There is everything from doctors, to specialists, research, therapy options, equipment and education, plus the dreaded DLA (that’s the disability living allowance here in the UK) and a ton of other things.
It can just get on top of you, keeping things filled, organised and easy to hand.
The other big thing you have to manage is the numerous appointments for your child. A parent of a typically developing child will honestly not have a clue how stressful this is. Why should they really? When my friends with NT typical children, realise even a portion of what we have to be responsible for, they are shocked. There is so much and it includes keeping a record of all the Doctors and personnel names. Who is responsible for what, who is the decision maker, where they’re located, the names and contact details of their secretaries plus any colleagues and additional information.
Many of these relationships are extremely challenging too so getting your game plan together each time takes effort.
Managing the appointments means working around regular family activities, child care for siblings, holiday and sick leave to work around and the cost implications.
Having a child with needs requires you to find and make more time in your day. It requires you to be the ultimate multitasker and organiser. Not only are you managing life with food shopping, feeding your family, parents evenings, work in and out of the home, making sure everyone has clean clothes and the right kit for school, getting everyone to clubs and making sure you have some time for yourself, maybe getting to the hairdressers and doing fun things but also paying the bills, managing daily life and your relationships, which can often come under a lot of strain when you are so tight for time. Your head is full to bursting with commitments, letters and emails you need to write, phone calls you need to make, research and preparation that has to be done before each meeting and making time to just be. Just be with your family. Just be with your partner. Just be with your friends. Just be you. You can feel in a total spin all the time. Remember what it was like to be a child? I remember thinking, blimey this is hard and couldn’t understand it when my parents would tell me that this is the best time in my life and that I had no real worries. Make the most of it they would say. Annoyingly, they couldn’t have been more right. Even with teenage angst and finding my feet as a young professional after University, nothing is as challenging as having children, especially when your child or children has additional needs, of any kind.
A favourite saying of mine is ‘It is what it is!’. Some things you simply can’t control like your child’s disability but you can take control in some areas to help smooth the path and give you some time back. Time is so precious and for parents like us it can be really limited.
The first thing you need to do to get organised and take back some time is to commit to spending some time planning. At first, it might seem like a mountain to climb and you probably feel you haven’t got a few hours to spare to even get started. You absolutely do have the time in there somewhere and if you are going to have a little freedom each day, it’s really vital you make the time.
First things first. If your paperwork is all in a jumble wait until the children are in bed or at school, whatever gives you space in the house. Put your favourite music on and make a list of all the different ‘topics’ you need to file the paperwork away into. So, like I mentioned earlier, I have areas like, therapies so that’s physio, occupational therapists, sensory etc. Then I have specialists broken down into, general doctors, Cardiology, Neurology, Ophthalmology, Orthotics, and Audiology etc. I’ve also got sections for alternative therapy, research, DLA, education and his EHCP like the individualised education plan.
Before you do anything else, make sure you have folders for each thing. I have around five big folders each with individual sections but you might find it easier to have each subject in it’s own individual file to make it easy to pull it out quickly when you have to make a phone call or attend a meeting. Sometimes colour coordinating the different areas like medical, education and research can help, especially if you are a stationary geek like me. It can be a good way to see what you need at a glance, so all the blue files are medical and the yellow files are educational etc. If you are short on space in your home, small folders for paperwork from the last 6 months to a year could be good and then keep the back catalogue in a waterproof box and possibly fireproof bags in your garage, loft or under the bed.
Next, turn your phone to silent, turn off notifications for Facebook and WhatsApp or any social media you like to look at so you can’t get distracted. You need time to focus. We are often great at doing a bit of multitasking but in my experience, when you try to multitask the really important things it actually just takes longer. Get everything out on the floor or your kitchen table. If you don’t really have any filing system at all you should start with making labelled piles for each subject. You might have to put aside two to four hours to complete this task but it will honestly be worth it. Once it’s done, you always have specific places to files things, you can get to information quickly so all of this saves you time in the long run. I promise you.
From a day to day point of view, getting organised also takes a bit of commitment to putting aside preparation time. Once you have your process though, you only need a little time before each week starts. Only you will know what works for you but I tend to take an hour or so each Sunday night to look at the week ahead. I check out what work commitments I’ve got, what everyone else in the family has going on, appointments, do I need to order Freddie’s medication and do I have any deadlines of any kind etc. It’s well worth doing it before Monday actually starts because once you wake up on that morning, the week is already in full flow.
Some top tips are to get the basics in place first. A family calendar that everyone in the house can see. If you are the only adult in the house and your children don’t read then you could look at a visual and written calendar so that everyone can see what’s happening in the week ahead. The visual calendar is really good for us because it helps keep Freddie’s anxiety down and allows the other children to see at a glance what’s going on. These are the family calendars I think are best and I personally use Mum’s Family Calendar.
The next thing is to get a really great portable diary. I know it might seem like you are doubling up but the way I work it, is that the family calendar holds just the basic information everyone needs like major appointments, work commitments, kids parties etc. My diary holds that plus everything else. The diary I love best and that I am currently using is the Busy B Family Diary.
I also have an overview wipeable planner where I can plan our meals each week. This saves oodles of time because I will have pre-planned what we are eating, ordered it to be delivered and that way, nine times out of ten I won’t have to make any additional trips to the supermarket or local shop saving time.
Either in your diary or in a daily notebook, keep a running To Do list. This isn’t meant to overwhelm you but it’s a way to brain dump everything as it comes into your head so you don’t have to try to constantly remember everything. It also helps with pre planning your week.
I would also add any deadlines if you need to, that way you will know if it’s an item on your to do list that can wait or of it’s time sensitive and possibly more urgent. If you think a lot when you’re supposed to be asleep, take your book to bed each night so you can jot things down and get your head clear for resting. If you prefer to use your phone for your running to do list you could look at Apps like Lists To Do, Wunderlist or Cozi Family Organiser.
Once you have your running list with dates you can plan that into your weekly diary, making sure you give time for travel, preparation, planning your well formed outcomes in advance of important meetings for your child, personal commitments, time to rest, time to exercise, which day the towels need to be washed and by whom, ordering the food shopping or going to the supermarket etc. Always try to keep a couple of steps ahead on some days to give you time if the unexpected happens. I usually pick no more than three things as my focus for the day. If they get done, I will do more. If they don’t, I will reschedule. Don’t get bogged down by guilt about how much you are or are not doing. You are only human and there really are only so many hours in the day. We all have days when we feel like we can win the fight and then there are days when we feel totally exhausted and unable to carry on. However, with a planning strategy in place, the stress levels can be reduced.
Another tip to add is to look at your list and see if there are any items which you can group together so for example, set aside to make all your phone calls or a time when you just focus on the emails which have to go out. Perhaps you need to prepare your well formed outcomes for multiple meetings, could you set aside a day to complete them all for that week? Grouping together really helps save time because you’re not switching between task type. With practice, you will be well away.
The other piece of advice I would always give and it’s one that can also take practice is to learn to say no to certain things. Don’t over commit, be realistic and don’t give yourself a hard time. You are doing an amazing job. Truly, you are. Being the parent of a child with needs is no mean feat. Don’t forget to delegate out what you can are willing to to other members of the family or external sources. Do whatever it takes to take back some time for you.
Catch yo next time. x