Special Needs Admin

Something that’s hard to understand if you are not living with a medically complex individual is the sheer amount of life admin that goes with this. Today is Monday, granted not my favourite day of the week by any means, however it’s not even 11:00 in the morning and already I’ve made multiple phone calls, sent what feels like hundreds of emails, rearranged two meetings, had a third one rearranged and sorted out a couple of mistakes in an oxygen delivery order. All of this is before I’ve had a second cup of coffee and certainly before I managed to actually sit down. Welcome to the wonderful world of medically complex parenting.

I am exhausted.

Not the normal tired that a few decent nights sleep or a holiday can resolve, but the deep tiredness that takes root in the bones. The vast majority of this morning’s ‘admin’ has been resolving errors, omissions and issues that are not of our making.

In between advocating for my son, fighting for support and chasing up the various agencies who should have sorted various issues, there is also the small matter of juggling family life and a job.

This life is not easy and it is made a lot more difficult when others don’t do what they should - to one agency it may be a simple oversight, a signature missed on paperwork that held up a decision. Easily sorted, apology sent. To the family it impacts however, it may be the latest in a long line of oversights, delays and added stress piled on as we chase up support/equipment/funding.

And if we speak up about how exhausted we are very often we are advised that we need to ‘take a break’ or ‘get some rest’. Believe me, we would love nothing more, however for most of us it simply is not an option.

This week we had the dude’s EHCP meeting. If I’m honest, I dread it every year - it is always a difficult meeting as he needs so many different agencies to meet his complex needs. Facing that reality is painful. It is also one of the most difficult meetings to arrange.

What eases the difficulty however is how every teacher emphasises how very loved he is, how he brings a calm and gently presence to the classroom and how his facial expression say more than words ever could. Things may be hard and they may be exhausting, but knowing our son is so loved means the world. While it is heartbreaking that he needs such a complex package of support to meet his needs, the fact that we HAVE that package is something I will forever be thankful for. Even if the admin for it is something that drives me to distraction.