Tag: timetolearn

How a typical child develops (from observation, experience and a little background knowledge!)

Watching a typical child develop is a bittersweet reminder of how Trudy’s development differed and differs.

Trudy and Patrick now have a little sister, a lockdown baby who has never seen anyone except her immediate family and grandparents, and knows her buggy much better than her car seat!

I watch her develop every day, learning to gain command of her limbs, the cogs in her typical brain turning to bang and hit and grasp her toys. She moves her body to discover what she can and can’t do, and what she still needs to learn.

It reminds me of Trudy’s first years, a floppy, hypotonic baby whose brain struggled to process everything at the same time. She would babble away (because Trudy loves to chat), but her physical development would stall.

She sat up on her own at 1, stood up independently at 2 and a half and walked at 3. Trudy is 5 now and she’s running.

Her baby sister will probably crawl before she’s 1 and be walking before 2.

And this is not that large a gap compared to some children but it reminds us of the difference between the way Trudy learns and how she will never follow a typical development pattern.

Trudy’s sister will learn through osmosis, through a combination of watching and learning, her innate faculties processing every little thing subconsciously then acting upon them with conscious and deliberate movement. She bangs herself on the head with a toy, she does it a second time and then doesn’t do it again.

A typical brain will absorb the concept of consequences much more easily than a child with learning difficulties, even if the child hasn’t experienced the consequence, so that the typical child will not wander far from home or run across a car park.

Most consequences we talk about are largely linguistic in that respect, “don’t climb too high or you’ll fall”, “don’t run across the road or you’ll get run over”, “don’t put your fingers in the fire or you’ll get burnt”. You say something like that to Trudy and all she hears is “put your fingers in the fire”!

Trudy will always need support to understand what she should and shouldn’t do, but with the right use of language, she can begin to process the world on a subconscious level, to inherently learn to be safe and independent of us.

There is research happening all the time on how to develop our young people’s independent living skills and ultimately make them less vulnerable. To make them safe, healthy and happy: Such simple aims to which we all have a right, and it should never be forgotten that some of us have the natural privilege to be.

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How our daughter with Down’s Syndrome changed my outlook

As I lay in the bath (yes, hear me out..), I watched the little islands of bubbles attach themselves to each other, and I was reminded of how simply a life and lives can be altered when just one chromosome decides not to divide. It’s amazing what you think of in the bath!

The process is called meiosis, from the Greek meaning ‘lessening’ and I love to know the origins of words! During meiosis, cells divide to produce gametes which can be the sperm or the egg. The egg contains unpaired chromosomes in its nucleus and these pair ever so romantically with the matching chromosome in the sperm to form a typically developing embryo.

Down’s Syndrome occurs when the 21st chromosome fails to separate in either the egg or the sperm, and approaches the encounter as a pair already, creating three 21st chromosomes. And we all know three is a crowd…

Like the bubbles in the bath clinging to each other, those 21st chromosomes had refused to divide and, from its conception, had created an imbalance in the egg that would turn into a child who would never develop in any typical way but grow uniquely and surprisingly. She would carry the traits of a child with Down’s Syndrome; the low-set ears, the flat nose and the almond shaped eyes. She would take her time to learn to walk and find it difficult to use language, although she would be sensitive to tone and intonation like nobody else I know.

This one random event in the development of an embryo has distorted the development of a life and affected us in ways I would never have imagined.

Being the parent of Trudy has its challenges but having her has changed me for the better.

First of all, there is writing. I used to write for writing’s sake, creative pieces and lots of nonsense, and now I have a reason to write.

Academic achievement has always been important to me and I would always want the same for our children because I have derived so much pleasure from study and learning. But what happens when an academic path is not available to one of our children? Having Trudy has forced me to reevaluate not only what is important for her but also what is important for all our children. And learning does not only occur in academia. The pleasures and small joys of life like sitting around the dinner table with family or friends, learning from them and learning from the great environment around us are enough to allow us to live full and contented lives, and isn’t this what we are all striving for?

I realised today that I had high hopes for our children. I want them to make great change, to affect other people’s lives in unique and interesting ways. And you don’t necessarily need degrees to do that!

Trudy may not learn to write extensive essays or solve multiple equations, but she will, with our help and support, learn to be a genuine part of society, earning her own money and living as independently as is possible.

Despite some confidence now, I was always quite shy as a girl and the prospect of having a child who makes the most noise in the playground, who talks to anyone and everyone, who wears her condition so unashamedly on her face and in her mannerisms, would have filled me with dread.

So, has this one random event of chromosomal nondivision made me a better person, a better mother? Well, I think it has.

I have more manageable expectations of our children, of myself. I take pride in the smallest of achievements and don’t sweat the small stuff. I revel in her uniqueness and our uniqueness as a family as a consequence.

These children and people are indeed ‘special’ but not for reasons of difference or impaired ability, but because they impact our lives in ways nobody else does. They force us to challenge fastheld opinions about how we should and shouldn’t behave and change our lives for the better.

We all know how Down’s Syndrome (Trisomy 21) occurs but nobody knows why. I’m not sure if these things happen for a reason but we make the best of our situation and sometimes what seems devastating at a time can be turned to an advantage.

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What it actually means to be an almost 4 year old with a learning disability.

“She’s got a developmental age of a 2 year old” is a common misconception of what it is to be an almost 4 year old with a learning disability.

It is so easy to see our children at an age which explains their delay in language or physical development. Trudy’s language is delayed and she probably has a word-bank that equates to that of an average 2 year old. But, have you ever met an average 2 year old? I certainly haven’t.

This was highlighted to us when we observed her playing with her cousin (who is 2). She might have the language of a 2 year old (in fact, she had far fewer words than him), but she has been on this Earth for almost 4 years. That means that she doesn’t have the tantrums of a 2 year old nor does she have their attention span. She can wait her turn and understand a queue. She can spend a long time at a table colouring in or having lunch because she has experienced these for almost twice as long.

This is something the outside world forgets but, for those of us working in the weird and wonderful world of ASN/SEN, we recognise that a 16 year old cannot be treated like a 2 year old despite their apparent disability. It is what we refer to as a ‘spiky profile’. Where language might be delayed, a child might learn to walk or climb or jump because, at that time, jumping is the most important thing to learn.

All children are motivated by what they desire to learn, and that is no different for children with a learning disability. They might just need more time to focus on each skill. Trudy has just been yelling at ‘Alexa’ to get her to play ‘Row, row, row your boat’. I am in no doubt that she will learn to say ‘Alexa’ very soon.

In education, we are moving away from harmful phrases like this which can perpetuate misunderstandings about disability and ability. With greater research in this area, we understand that it is no longer appropriate to say that a child is less able than another without considering all areas of their development, and what we learn from children with additional support needs can help us understand the differences and quirks in all children.

Some of the books I have read recently have informed my opinion of this:

Dewey, J. (1916) Democracy and Education. New York: Macmillan.

Florian, L., Black-Hawkins, K. and Rouse, M. (2nd ed) (2014) Achievement and Inclusion in Schools. London: Routledge.

Hart, S. (2004) Learning Without Limits. Oxford: Oxford University Press

Universal Design for Learning

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Holland Versus Italy

jtp_8892_180606_trudy

On the eve of World Down’s Syndrome Day, it is apt to shine a light on a wonderful essay (in my opinion) written by Emily Kingsley in 1987, called ‘Welcome to Holland‘. It sought to explain what it felt like to have a child with any kind of disability or additional need, or quite simply what it was like to have a child you did not expect to have. This analogy has been used again and again by organisations and associations for new parents coming to terms with a diagnosis or to help others understand what we go through. So, here it is in my own words:

You set off for Italy, guidebook in hand, full of excitements for sun, pizza and duomos, only to find that you are not Italy. You got on a plane to Holland. You’ve never been to Holland before. You’re nervous, unsure, worrying about what happened to Italy. It takes time, but you begin to explore the tulips and the museums with some help from some very nice people. You discover some cool things to see, you get to know some Dutch folk and you sit amongst the tulips. You begin to see the beauty in Holland. You might still think of Italy but those feelings fade over time and depending on how much fun you’re having in Holland.

We are lucky because Holland for us was easy to love. There have been few complications with Trudy and she is making remarkable progress, but a lot of that is down to the fact that we have worked very hard to forget Italy. We did this because it was the best thing to do for our child, for her to feel loved, nurtured and deserving of a place in this world.

That’s not to say it has always been easy and it is harder for some than for others. As a teacher of children with SEN/ASN, I remind myself every day that some parents may be sitting amongst the tulips, but still pining for Italy. Holland cannot be ignored or avoided, and we must make the best of what we have. So, let’s not focus on what we could have had but what we have in front of us: a healthy, happy little girl.

Happy World Down’s Syndrome Day 2019.

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It’s not a race

After having a child who has learned everything so quickly, it was very strange to then have Trudy. I was used to having no worries about whether my child would meet his milestones. With Trudy, I am always worried about when she will get to the next one. I call them my Hare and my Tortoise, and I truly believe that slow and steady will win in the end.

Patrick learns things so fast and will work at something until he has mastered it, but then he moves onto the next thing. Trudy does not have that luxury – she needs time. I have never seen so much patience and perseverance in someone striving to get up a slide or master the stairs. She observes, she tries, then she tries again. Sometimes, her body can’t do it but she parks it until she is ready. The majority of us have the advantage of relying on our bodies to do what we want them to do. Trudy’s body always seems to be lagging behind. I wanted to get her a t-shirt that said, “doing the best with the body I have”. I think that would probably be true for a lot of us. So, it is remarkable when I hear stories of people with Down’s Syndrome swimming the English Channel (please look up Karen Gaffney) and competing in gymnastics in the Special Olympics (look up Scotland’s own Andrew MacIntyre), to name but a few.  Karen Gaffney said that “life prepared her for her swim”, that the defeats she had experienced in her life gave her the strength to complete the race. Trudy was not learning how to get up a slide, but to keep on trying. She was learning resilience, she was working out how to do things in a different way – she was learning to problem solve. It is high time we started to focus on and celebrate these so-called ‘soft skills’.

We do so much, so fast, like we want life to pass us by. We are always in a hurry to get to work, to get to school, to get to the next appointment, when we need to spend more time in the moment. Our daughter has taught us that, not to worry about the future and her future, but to enjoy having her and her brother now, fit and healthy and happy. And, after all, that’s what counts.

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