Health, self-care, SEND approaches

Time for you

Being a parent is a full time job – we know this.
Being a parent carer is the same – on steroids!

Our children with additional needs also require additional time. Additional attention, additional affection, additional looking after.

So how do you find the essential time for yourself, your partner, your friends that will allow you to be the parent you want to be?

In a world of compromise I’ll offer a few ideas that helped me from time to time. Let me know in the comments of things that have worked for you!

  • Develop the idea of “quiet time”. Maybe start with snacking after school with your children, chat about your days. Then everyone goes to their room, their space for 10, 15, 30 minutes to rest, process and reset before coming back together for the evening. As time goes on, you’ll be able to have an hour of quiet time that you can use to enjoy their presence without them clamouring for your attention.
  • Consider “joint journalling”. Many of our children suffer from separation anxiety – it’s a real thing that we need to be very careful with. If you decide together what your creation will be (for example, today’s theme might be the weather), then go to your separate spaces for 20 minutes to draw, paint, write your part of the journal. Then come back and compare, add each part to your joint journal. Your child will know that in that 20 minutes apart from you, they were your sole focus. Slowly they can learn that you exist away from them, and you still care about them when you can’t see them.
  • Community… this is a huge one. How many families do you know from your child’s school. Even in primary school this is a really tough one for our families. Maybe ask your child’s teacher to help you make links with another family. The SENCO (special educational needs coordinator) might put you in contact with other families like yours, but don’t discount the value of making friends in the wider world.
  • Extra-curricular activities. Be they after school clubs, scouts, short breaks for disabled children, these are a breath of fresh air for all parents and should be available to our children too. You may need to talk to the organiser about your child’s needs, or even talk to the school about a shorter school day to make such a thing possible. But be brave – talk to people about what’s out there.
  • Baby-sitting. This can be impossible, or seem impossible. But even if you do not have family that can help, it is likely that one of the teaching assistants at your child’s school would be more than happy to help out. There may be some charities that can offer support, but if you’re able to use the people in your immediate community, it will last longer. Start by having the babysitter help out with your normal afternoon or weekend routine. Eventually, you’ll be able to leave the house for ten minutes, then long enough to run a small errand. Build up slowly, and you will be able to manage a proper outing. Bear in mind that there are also agencies that offer specialised babysitting.

Who are you? What do you want to do?

It’s really important for any parent to try and hold on to a sense of identity. Many of us forget that, and it can be very painful to “wake up” one day and discover that we have invested our whole being into parenting. Because whatever the degree of need our children have, they will eventually be grown… and we can find ourselves lost, alone and very much on the verge of despair.

So here’s my challenge today: who do you want to be? What hobbies would you like to try? What was your passion before having children?


Whose doctor are you?

GPs, paediatricians, nurses, I’m talking to you. All of you who work with children and young people.

Whose doctor, nurse or therapist are you? Mine? or my child’s?

It sounds like a facetious question doesn’t it? But the reality is that through nearly twenty years of taking children to therapy sessions, medical appointments, hospital procedures and operations, it is one that I have struggled with from several different perspectives, and I have to admit that those doctors who have found the “right” balance have been few and far between.

My child is your patient…. so talk to them!

He may only be able to nod hello. She might not be able to meet your eye. He may HATE you, simply because you are a doctor. But.

Say hello. Know their name (make sure your notes tell you that he likes Jim, not James). Use sign language if that’s the way she communicates. Consider having a picture of yourself with your name written on it… either a photo, or a cartoon version of you.

Remind them what your job is. If you are a cardiologist, you are there to make sure their heart is working as well as it can. If you’re an endocrinologist, good luck with finding an accessible description of your role 🙂

Explain why my child needs to be there… many children have endless appointments at which they simply do not understand their role.

Give them an opportunity to tell you something that matters to them… even if it is the latest Thomas the Tank Engine story!

At the end of the appointment, tell them what you learnt, how they helped you and what you are going to do next.

I am a parent – not a patient!

It can be so tempting to see my worry, my exhaustion and see a patient. But I’m not, and I need you to talk to me and figure out what kind of parent I am.

Know my name – if you’ve forgotten, ask me!

Some parents are going to need hand holding through their child’s care, and you will need to take many of the same steps as I suggest above for the child.

Many parents you meet in the world of SEND are experts. They have spent years learning about their child’s condition, how to support their child’s health, how to advocate for them in more settings than you can imagine. (A little secret from me to you: I’m one of those!).

There’s a good chance that I know more than you about his syndrome – you are the expert of his heart, I am the expert of the human.

I will have some very narrow, specific knowledge that can help you treat my child to the best of your vast ability. I also know how she responds to treatments, how she is eating, sleeping, how he is managing school and how fatigue manifests day to day.

I am a member of the medical team around my child. Please treat me as such. Explain things to me as much as I ask you to, even if you feel I don’t need that level of detail. If I ask you to perform a test, talk to me about why or why not.

Thank you!

To those doctors, nurses, therapists, health care assistants, dentists over the years who have SEEN my child, thank you.
To those of you who have seen me, taken the time to hear me and recognise my expertise, thank you.
I’ve chosen at times to wait two hours or more to see you rather than your registrars – thank you for giving me the opportunity to build a relationship that has meant more to me than you might know.

My challenge to you:

Doctors, therapists in particular. I have a request, a challenge if you will. Tomorrow, after you see a child in your clinic when you are writing or dictating your clinic letter, I would like you to stop, think and start again.

I would like you to write that clinic letter to the patient, the child.

Copy in the parents, the GP, other consultants, all those people that must be included in the public space that is a medical child’s life. But write to the child.

This means using language that is simple, clear, understandable. This means considering how to explain medical jargon, complicated ideas in a simple way. I know it’s not easy, but I promise you it will improve your practice.

Don’t be afraid of giving children complicated information. Medical kids are surprisingly knowledgeable and capable of understanding more than we think.

And yes, of course, most children won’t actually read your letter. Most parents will choose which letters are appropriate for their children to access. But your letter will be more accessible to us too!

If you are a doctor, a nurse, a therapist and you have taken this challenge up, please comment and let me know what happened.