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‘Dear Future…’ – Letters for Down Syndrome Awareness Month

little boy with down syndrome smiling with his mum

As part of October’s Down Syndrome Awareness Month, a series of ‘Dear Future …’ letters have been written.

These have been written in conjunction with PADS (Positive About Down Syndrome) to help future families and professionals have a better understanding of children with Down syndrome. Our very own June Rogers MBE, Children’s Specialist Nurse at BBUK has written a piece called ‘Dear Future Heath Visitor’. June has 35 years’ worth of experience toilet training children with Down syndrome.

Dear Future Health Visitor…

Dear Future Health Visitor and Children’s Continence Nurse,

You have booked a number of home visits for today and I am number three of the children on your list. I understand you are new in post and have not had a child with Down syndrome on your caseload before, so you are not sure what I can achieve or what advice to give my mummy.  You’re probably nervous as to what to expect of me, how my mummy will be and worried about not saying the wrong thing.  Don’t worry – you’re not the first and won’t be the last!!  When you arrive at my house you are indeed a little anxious about what you are going to say to my mummy and knock on the door with trepidation, not knowing what to expect.

My mummy opens the door and invites you in. She is happy to see you and is keen to introduce you to me, her beautiful clever boy. She goes off to make you a cup of tea while you take a seat and have a quick look at me, while I play in the corner of the room. What you see is a child who is not yet talking and not really walking, so immediately your thoughts are that I have learning, and physical disabilities, so am going to struggle to learn new skills. That is what you see.

What you don’t see is what my mummy sees – a child who is keen and eager to learn. Who maybe sometimes struggles and takes a little longer to learn new skills but is enthusiastic about life and loves to engage with adults. You have already labelled me in your head as having ‘special needs’ and therefore limited me by making assumptions and decisions as to what I will and won’t be able achieve or do.

You have come to carry out a routine assessment and have pages of questions that need to be asked and boxes that need to be ticked, so I know you are keen to get started. You go through the pages and ask the standard questions. As I had not been saying a lot of words you see that I had been referred to the speech and language therapist. However, even though I don’t say a lot, I understand everything my family say to me and I love looking at books and pointing to different pictures. I already have great empathy for people, and I know if anyone is happy or sad. Mummy asks me to show you my favourite book and you are surprised when I pick it up and show it to you.

“That’s clever” you say, and I give you a big smile and then you smile back. You start to relax.

I was late sitting and am just starting to walk so you check with mummy that I’m seeing the physiotherapist. What you haven’t seen is my determination to succeed and how I keep practicing my walking by holding on to the furniture. However, you watch as I try to stand up and give you the book – it takes several attempts, but I eventually succeed. ‘He is a determined little fellow’ you say to mummy with some surprise. “Oh, he knows what he wants” says mummy “and works hard to try and get it”.

You tick some more boxes on the form. The assessment is nearly complete, and you get ready to leave. Then Mummy asks you about potty training, and I can see you’re quite shocked – because you clearly think that I am “not ready” and you tell my mummy that. It is not on your checklist list and you had presumed that potty training would be something that would be tackled ‘later’.  After all, I can see you’ve assumed that a child who can’t talk or walk can’t possibly be ready to be toilet trained.

What you don’t know is that many children with Down syndrome, can be toilet trained at the same age as their typically developing peers. Toilet training involves a lot of skills, which can be broken into simple steps. It can take me some time to learn new skills, but with lots of practice I can usually manage to achieve them. However, unless people give me the opportunity to learn new skills how can I achieve anything? Lots of children (especially boys!) can struggle with potty training and will need some help, so helping me will be no different than any other child who is not yet reliably clean and dry.

Mummy is keen for me to be toilet trained for when I start school. She tells you that I already sit on the potty after meals and now mostly do all my poos there (and the occasional wee!) and have very few ‘dirty’ nappies. I can see you’re surprised – Gosh, you think – this regular potty sitting is something you don’t even suggest to parents of ‘typically developing’ children. This makes you think that gradually introducing regular potty sitting is perhaps something you should be advising all parents to do.

Mummy points out to you that I have been referred on to other professionals for help with walking and talking so wonders if there is anyone who can help with toilet training. This gets you thinking that perhaps you can give mummy the same advice that you give to other mummies about potty training. Something that you didn’t even think about before now. You tell mummy that you will also speak with the children’s continence nurse, who can provide some extra advice and information, as necessary.

At the end of the visit you come to realise that I am not really unlike any child on your caseload. After all, all children are individuals with differing needs and abilities. As you leave through the front door and say goodbye, you now don’t see a ‘special needs’ child, you now see me!

The third little boy on your list who needs you to have high expectations.

There is a closed potty training Facebook group for parents of and professionals working with children with Down syndrome in the UK aged 5 and under. If you are looking for further advice and support this Down Syndrome Awareness Month, please visit: https://www.facebook.com/groups/219984462212935

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