We all have off-days. Or off weeks, months, years! Here’s a reminder to do the basics to look after yourself.
But I also remind myself when I feel exhausted that children with additional needs often feel that way all the time… it’s a good reminder of how they experience life and how we can help them.
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!
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?
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.
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.
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.
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.
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.
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