Sunday, 2 June 2013

Dear Professional...

I write to you as a mother. As a mother of children with a disability, special needs, learning difficulties, physical and medical issues, brain injury, challenging behaviour, sensory processing disorder, epilepsy, downs syndrome, fragile X, cerebral palsy, autism. My child could be any of these but the simple fact is I write to you as a mother asking for help.

It may have taken me a great deal of bravery to come to you. To let you into my life, my child's life, my family life. I may be scared you will pass judgement on me. Maybe you will lay the blame at my feet. But I've climbed mountains, fought personal demons to do what is right for my family and ask you to help me. Do not judge me..commend me. Do not scowl at at me. Make me feel like you will go the same distance for me as I have travelled to get here.

My story did not begin when you entered my life, and it will not end there either. My story will continue long after you have walked away. But for that brief moment you are part of my story. Make it a positive experience. Write the chapter where you make change. Be that person we have been waiting for. You may be a supporting role or a starring part but they are equally as important to me. The story is unwritten so add your own elements and change the story for the better. Be the character I will remember long after you have left.

My children are precious to me. They are my world. I will never hurt, damage, break or alter my child and you must not either. Embrace my child. Love my child for those few minutes, hours, days or years that you are with them. Treat them like there is no one else on earth. Show me you have their best interest at heart. Acknowledge them, play with them, show them you care. Take off your tie and play with them. Put down the clipboard and let them on your lap. Ask me how they are doing if they are not with me. Ask for photos and updates. Ask me what they can do instead of what they can't. Leave me on a high. The lows are already too great to bear alone. Be my shoulder to cry on and I will sing your praises through my story.

Do not assume that you have the answers. Do not tell me you don't. Work with me, not against me. Think about what you say before you say it. Don't say it if you don't have to. Do not promise anything except your best effort and in turn I will not criticise your efforts if they come from the heart. One size does not fit all. Accept that I know my child. Listen. Trust what I say to be true. Do not disrespect those opinions without good reason. Nothing about me, without me.

I am emotional. I am tired, sad, angry, stressed, distressed, grieving, confused, optimistic, pessimistic, happy, content, dissatisfied. Sometimes all at once. Accept these emotions. Empathise. Acknowledge my feelings in every meeting. Work with my emotions. Help me deal with them. Recognise that despite all of this I'm trying my best. Tell me you know this. Give me your time even though you have none. Go that extra mile. Support me appropriately. Signpost me accordingly. And I will thank you for it dearly.

Know that we are not in the same place you and I. You do not live this life but have the honour of being invited in. Respect that. Do not try to second guess my needs. Ask me. Tell me you recognise the differences  between us but will try to understand. Do not underestimate the strength and bond between parent and child. Know that watching a child meltdown, seizure, self harm is not the same as watching YOUR child meltdown, seizure or self harm. You will never understand the lengths we will go to to stop that happening so do not tell us to let it happen. Your expertise does not outweigh my experiences but together they can be a power for good. Question with sensitivity. Leave your ego at the door. Learn from me and share your knowledge. Talk to me like a human but remain professional. This way you will gain my respect.

Leave me happy. My family helped. End it well. Say goodbye. Tie up all loose ends. Give my child closure and leave me satisfied. Know that you made a difference. Look back on your time with us fondly. Be proud to have helped.
Dear professional, you have a chance. An opportunity to do good. To create a union that will strengthen a family. To arm me with the tools to cope. To help me help my child. To ease my emotions. To make my family a happier one.

But you have to want to.

I hope you want to.

A mother.


Ken Upton said...

So very true....

Sarah-Jane said...

Hi Donna

I'm a mother of a child with mild ADHD and Autism and I'm also a student children's nurse. I have printed off this letter to keep in my nursing evidence folder as a reminder of exactly what my future job should be :) thank you for sharing this.

Michelle Daly said...

And so say all of us!

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