A couple of Fridays ago we met J’s new speech therapist. I was anxious because we had worked with J’s previous therapist since just before his second birthday. Meeting someone new who didn’t know me or J’s history was daunting. As I sat in the waiting room I was thinking about all the professionals we have had in J’s life time…the good and the not so good.
I was once the professional. I am an Early Years Professional and SENDCO, and after 14 years I paused my career to be able to fully support J. Seeing life with an SEN child through the eyes of a parent has really opened up a whole range of new emotions and a respect for what parents go through…emotionally and physically. When I return to work I hope that my experience stays with me and I remember what the parents I will be supporting are going through.
So, today I write an ‘open letter’ to all professionals just telling them a bit about how us, as parent may be feeling before every appointment…
I am so happy that there has been enough funding and resources for my son to be seen by you. I have spent most of my child’s life worried about everything from ‘is he eating enough?’ to ‘is he going to be able to live independently as a grown up?’ (Yes I’m even worrying about 20 years down the line). Every parent worries, I get that. But as well as the everyday worries I’ve also had years wondering if there was something ‘more’ to his behaviors and the way he looks at things. With the waiting lists as long as they are, these worries have been ticking over in my head. Often keeping me awake at night. They are deeply rooted inside me now.
I can tell you that meeting any professional for the first time is scary. I don’t know if you’re going to believe the things I say, I don’t know if you are going to help us, or not see/understand the help we need.
You see, I’ve had both good and not so good experiences with professionals. I’ve had those who didn’t take me seriously. Ones who told me my child was fine and I was just looking too much into things. I’ve had ones who I have begged for help who have told me to just ‘see how it goes’. Even after all this time, I still get that anxiety over a new professional as I relive all the times I’ve made to feel like this was all in my head.
I’ve also had great professionals. The ones who I have cried down the phone too when it’s all too much. The ones who have so much patience and understanding of my child and how he sees the world. They open my eyes to how he thinks and make me a better parent. I’ve had professionals who have brought me together with other families in similar circumstances so I have someone to talk to who is going through this journey too. They become more than just a professional, they become part of our lives. Saying goodbye to them is emotional as they have become a symbol of understanding and acceptance.
Can you see why meeting you may be intimidating? I don’t know which type of professional you are going to be. I’m scared you might pull away the support we have in place as you don’t feel we really need it. I’m worried you aren’t going to bond with my child, that you wont treat him with the understanding our other professionals have. I’m worried that you’ll get fed up of my questions.
Basically what I’m asking of you is to please see me as an expert in my own child but also a nervous, neurotic, tired parent who needs someone with your knowledge of children with additional needs to give me the advice…and sometimes the nod that I am doing it right. I need you to listen to me and be interested in us. Ask me about us, ask me about my child. Ask what works for us because believe me we have tried A LOT of different resources and strategies. I am open to change and new ideas. But please, talk these through to me. Let me know the plan. I need to know what you’re thinking. I live my life three steps ahead. I like to know where things are headed and the possibilities or difficulties.
We’re not asking for special treatment. I know we’re just one of many families on a long list that you are supporting. Trust me, I appreciate that. But to me, my child is the centre of my universe. I’m just trying to do my best. I hope you can see that.
I look forward to our time together and seeing how we can help my child to continue to navigate the world around him.
An SEN Parent.
Charlie from ‘Our Altered Life‘ says: “My first health visitor said “so your son is Harry and he has Golden something? Do you think it was something you did?” I was still struggling to get my head around it all. She was unprepared, unprofessional and insensitive. Thankfully the HV I had after her was amazing but I never forgot how much her words stung me!”
Jenni from ‘Rainbow Dust‘ says: ‘When my son had his eye appointment at hospital it wasn’t his usual lovely consultant instead we got his colleague, because I’m deaf and worry about new people I asked my mum to come into the room with me in case I didn’t understand him…explained I was deaf but could lip read if he looked at me. He ignored me and started examining my son…turned lights off…turned his back on me…and decided he would only talk to my mum. Never felt so small in my life.’
Hana from Mama Unexpected says ‘Tilly had a new geneticist who I’ve never managed to meet and so when she was put on the genome project I was really anxious she wouldn’t do enough for Tilly She rang me the day of Tilly’s diagnosis completely bubbling with joy down the phone to tell me she’d been diagnosed and it was a treatable condition I’ve never felt that a health care professional has cared so deeply about their job and the children they work for until that phone call”.
Lucie from ‘Coffee and Converse‘ says: “My son was diagnosed with autism and the 1st meeting I had with school SENCO afterwards, one of the 1st things she said to me was “you know now that he has that diagnosis there are loads of jobs he wont be able to do when he’s older”, I was still getting to grips with his diagnosis and autism was something we knew nothing about. Thankfully he is in an SEN setting now where the staff are all professional, caring and kind, and he is thriving. I will never forget that! Ever!”.
Have you got a particular professional that is a big part of your life? Or have you had any who just broke you? I’d love to hear about your experiences. You never know, a professional may read this and your comments and this could help them see how life is for us.