Convoi Exceptionale

A quick and absolutely non-exhaustive list…making meals, food shopping, school run, school letters, clothes shopping, paying club fees, parent rota, swimming kits, housework, form filling, bank and bill organising, role playing, play date organising, homework coordination, bedtime routines, going to work, doing well at work, brushing your hair, answering messages alongside exercise and trying to maintain relationships- to name only a few of the things that belong to the ‘The Motherload’.

I am sure you can think of masses more to add to the list of physical and psychological jobs that a parent does every day. Sprinkle in a dose of parental guilt from time to time and you get the idea of the energy it takes to raise the smalls. This list is ever evolving and shifting on any given day and as they grow from smalls to bigs, the roles and responsibilities continue to change. It is so rewarding but can be all consuming too.

When a child has complex and additional needs this can make the load of a parent even more. Within school we use the term ‘above and beyond’, meaning that support we put in place for a young person is additional to and different from what is provided for all of the other children. This requires careful planning and good communication between all parties to make it effective. This is the same for the parenting of a child with complex needs too.

Ever since the new diagnosis of Tango2 for boynumbertwo, nothing and everything has changed at the same time. He is still his usual happy, cheeky, inquisitive self and the rest of the family are our usual selves as well.

Everything is different too. We have more appointments and specialists to get to know and a disease to understand. The complexities of his condition mean that the symptoms are wide and varied. We are under new professionals and have new support systems in place. The care and understanding we receive is amazing. We couldn’t really ask for better.

However, there is a major side effect of this. As an example over the past 4 weeks here is a list of things ‘different and additional to’ the usual parenting… speech therapy, specialist speech therapy assessment for a communication device, night leg splint fitting, Physiotherapy, orthopaedics, day leg splint casting, day leg splint fitting, learning to walk in splints, wheelchair services measuring for new chair, new chair fitting, hospital admission- with ecg and blood tests, London hospital trip for thyroid scan, new medication regime for calorie intake, educational psychology assessment(!), annual review, paediatrician appointment, nurse visit, antibiotics, flu spray, new thyroid medication regime. All alongside all of the other daily routines and going to school.

We try really hard to make sure that our other two children don’t come second to all of this and that these needs don’t rule the household. All boys and their needs hold equal importance and remembering this and not allowing our other children to feel less important or somehow coming second to the medical and additional needs is always present in our minds. We try really hard to make sure boynumbertwo’s other needs such as his clubs and social needs don’t come second to the appointments either. We also try really hard to maintain our own self care and do the things that we personally value and enjoy.

It’s exhausting.

There are moments when I think to myself how tiring this is- and then I catch myself and think that if I am exhausted by this, then how must he be feeling?? I have spoken before about the incredible resilience he has, and this is still so true. He is amazing. He inspires us all everyday with how he manages and copes with what happens for and to him. The recent ramping up of appointments and especially invasive appointments, has caused him to develop lots of anxiety about these. This is probably the most difficult aspect of it all. He is due to have play therapy support around medical anxiety which we hope will be really helpful for him.

The complex needs motherload is big, but as a parent you have to get on with it, put your big girl pants on and do what is needed. Sometimes people say things like ‘I don’t know how you do it’, but there is no choice except to just get on with it. Communication and support is critical. From time to time I do forget a school reply letter or am a bit last minute with invitation replies or school dinner money, but I am never offended by a gentle kick to remind me! Just saying.