We are delighted to be able to share with you a guest blog post today from a parent of a child with PMLD. Gemma is an incredible mum to two amazing little boys- Tom and Ed. Tom has a diagnosis of Cockayne Syndrome- a rare and life limiting condition for which there is currently no cure. ‘Amy and Friends, Cockayne Syndrome Support’ is a charity dedicated to support the health and well-being of sufferers of Cockayne Syndrome and their families and carers around the globe. Gemma recently attended ‘Amy and friends’ annual conference, where they were able to spend with other affected families and meet leading doctors and researchers, which they found it an invaluable experience. You can find out more information and how you can support the Amy and friends charity here.
With most schools heading back to school this week after the summer break, I’m sure there will be many newcomers to the SEN teaching profession as well as existing teachers with new classes who would find today’s post a great insight into parent’s perspective. Gemma’s post focuses on what she would wish for any new teacher to know, ask, share and do when teaching a child, such as Tom, with PMLD. Here are Gemma’s ten top tips for new SEN teachers.
1. Introduce me.I need to meet the team, everyone including TA’s that support my child. I need to see where my child will be spending their time, to know roughly what you plan to be doing. This will ease my anxiety and help me visualise and discuss you with my child.
2. Include me.
Let’s discuss realistic outcomes we are aiming for and how we will achieve them at both home and school. If we build a relationship we can work better together, to help my child have the best chance of succeeding. I am an expert on my child – use this valuable information.
3.Welcome me.
I need to feel welcome and have face-to-face contact, especially as we use the taxi transport. Invite me into school to events, school trips and theme days. I love to see my child interacting with staff and peers and can talk about it at home. It is lovely to have opportunities to meet and chat with other parents.
4. Include him
Always treat my child as an individual. Be prepared to adjust the environment and differentiate learning to his needs and interests so that he is included in every activity. Focus on independence, communication and self-help first, subjects second.
5. Respect him.
Please treat my child with dignity and respect not only during personal care but at all times. My child may not be able to speak but is always listening, and understands more than you think!
6. Talk to me.
Please tell me the important stuff daily e.g. toileting and nutrition. I love to hear about my child’s day and see photos to discuss with him and share with friends and family. Use technology to do this– it’s easy, effective and cost efficient e.g. Tapestry for photographs on daily activities, upcoming events and general information that alerts your phone when there is an update. Paper gets lost and overlooked. Please remember that I have so much to think about, that early and reminded notice of events is very helpful.
7. Let him do it.
Please encourage and boost self-esteem. I would much rather see a gift or picture that my child has clearly done, than something perfect, completed by teaching staff or hand-over-hand.
8. Be honest with me.
Explain, discuss and admit mistakes. Nothing gets my back up like secrecy and defensiveness. If I am rude, it’s likely because I am anxious, please be patient with me.
9. Celebrate him.
There will be challenging times that I need to be aware of and we must manage together, if necessary with the help from other agencies. But always help me find the positive and celebrate the little ‘BIG’ steps.
10. And finally….All I really want is for my child to be safe, feel loved and enjoy his special time at school.
Tom after our session this afternoon exploring the topic of hairdressers. Blog post to follow!
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