A close relative who is also an Occupational Therapist has recently found herself on the Special Needs journey.
She works in hospitals four days a week. People consult her for advice and opinions.
On her other days in hospitals for appointments, with her Mum hat on, she had noticed something strange.
Her opinions are an afterthought.
“We’ll do this and this and this. Alright Mum?”
Opinions and appointments are offered as a foregone conclusion.
If she knows an investigation is available or helpful, she has to repeat herself.
Again. AND again. She has to employ more assertiveness and determination her mum role than she does in her professional one. There is an imbalance of power.
I am not offering this as an example of how bad professional are. She is one, I was one.
Only a generation ago Doctors and Health Care Workers weren’t required to work collaboratively, they were Consultants, the ones with the answers.
Naturally good doctors always have been great communicators, but if they weren’t it was rarely questioned.
You had less choice in who you saw, and knowing a Medics first name, much less using it was a very rare thing. This is the medical model-you see a medic they fix you.
Things have changed a great deal, and some have stayed the same.
The Medical Model continues to haunt the NHS-and let’s be honest as users it is what we would really like.
Imagine if I took my nonverbal girlie to the Paediatrician and she was given a pill and came out talking!
In the beginning of the Special Needs journey this is what most of us want and expect.
There must be an answer, mustn’t there?
So, the imbalance of power is partly historical, partly to do with a Western idea of medicine, and partly handed to the professional by us. (Think “my child is broken please fix it”)
There are other reasons though that we find ourselves disempowered as parents.
One is very simple. We are in crisis. A situation has occurred that we have not encountered, most of our friends and family haven’t experienced and we are not taught about at antenatal.
We have a child who is different, and we don’t know what it means, for us for them or for the future.
When I was working as a Speech and Language Therapist, I had loads of experience of Speech and Language problems. None of this experience was personal.
I had met and become close to lots of clients with language issues, but I had not lived with them.
The Hospital I worked in was my place of work-for the community it was a place of crisis.
Friends and relatives had experienced the worst moments of their lives there, and some had lost their nearest and dearest.
My friends worked there with me, shared coffees and lunches. The work was emotionally taxing (health professionals are generally an empathetic bunch who experience some degree of vocational calling) BUT at the end of the day I went home.
I offer this as an explanation not as a solution.
Professionals can become excited by new therapeutic solutions that won’t work for you, for your child or family-so how can you come to hospital meetings and not be overwhelmed or feel confused or railroaded into plans you are not happy with?
Feeling emotional, confused and vulnerable is normal. You are in an unusual situation.
In the early days try not to go to appointments alone. If you don’t have friends or family able to come, local parent support groups should be able to offer you an advocate.
This is great as along with having another person on your side of the table they can debrief you afterwards. It is entirely possible to go in to an appointment and feel you’ve understood everything only to immediately forget it all.
Trust me I’ve done it!
Think of what you want of the appointment. Write it down before you go in and try to get your questions answered.
If somebody says something you don’t understand ask. You are not being stupid; they may be using language they take for granted in work life that normal mortals just don’t speak.
Try to summarize what has been said in the meeting to check you both understand.
“So, you’ll make an appointment and I’ll get it in the post?”
You may not get on with every Professional you meet. That is OK they are not your friends.
If, however you think they are not working in your best interest, despise you or seeing them makes you feel physically sick you should probably talk to someone, because that is NOT alright.
Finally treat yourself! If the idea of appointments and the amount of emotional strength you need to get through them makes you anxious try to trick yourself with the promise of coffee cake or McDonalds on the way home.
It works for my 13-year-old, and frankly me too!
The dream is meeting Professionals who you get to know, form a good working relationship with and who you look forward to seeing.
It will happen and when it does, when they understand you and your child that is momentous. Cherish those people and reward them with chocolate if necessary, they are worth it!