A Reflection on Dillan’s story by Maya James

Written by Guest Writer

March 8, 2021

As a mother of three very unique and equally precious children, I sometimes struggle with words utilised to describe my middle child Dillan who was born with an extra chromosome. 

I have been frequently told that he would be ‘my special boy’ to which I tend to retort, ‘they are all special’.   The person, who I had probably made to feel uncomfortable is then quick to qualify that ‘ Dillan would be my extra special child because you know…’.  I did not. I do now. He is perceived as different. 

I was warned of this shortly after his birth.  The neonatal practitioner was ruthless:- ‘simplistic earlobes, short digits, flat nose bridge, single fold eye lids…., lower IQ’.  I felt like punching him in the face.  Who was he, to be allowed to insult my beautiful baby boy, lying there all so innocent and pure.   Did he think his earlobes and eyelids were perfect?  I lost the little respect I had due to his doctoral status when he uttered:- ‘to put it simply your son will never go to Oxford’.  It was this point that I held my eyes on his and I hope I said out loud:- ‘I never went to Oxford either?!’.   

For ten years I have found myself enveloped in everything children love.  There is hardly ever news on our telly, we catch the briefs on the radio or off social media, whilst they go through Peppa Pig, Mr Tumble and of course, a lot of Disney classics.  These programmes have always been Dillan’s ‘bread and butter’, a reality he seems to relate to.  I am still staggered at how many of the programmes focussed on children today promote difference, diversity, acceptance and celebration of that uniqueness and individuality, yet the reality we live in is still very different.  The way we are heading with prenatal testing, Down’s syndrome may be completely extinct one day in the not so distant future and some Scandinavian countries are already making progress towards this questionably successful trend.  Our cute and beautiful offspring are often referred to as burdens to society and we as parents, dread to think of their future as adults in a world which remains so unwelcoming and hostile to their needs.  I personally, am working on my dreams, eager to change attitudes and dispel myths associated with Down’s syndrome and disability in general. 

What is it, I cannot help but wonder, that is so scary about my Dillan?  He sings at the top of his voice, smiles readily and whilst astute to our emotional states, could be remarkably obtuse about us being genuinely upset. Quite like the song from ‘The Greatest Showman’, he makes no apologies and is ALWAYS himself…he lives in the moment.

We have made every effort to put him out there in the so-called community, as much as his other siblings.  But whilst they go unnoticed or attract little acknowledgement, Dillan’s presence is often met with open stares.  I have learned that children often absorb and copy their parents attitude.  Some are quietly attentive and nurturing, others are pre-occupied, too busy to give the time to a boy who is clearly too slow for their hectic pace whilst others would simply go out of their way to be mean or hurtful.  Many a time I have observed a child with their little foot tapping, arms akimbo, glaring at my Dillan and saying: “Just move, I asked you to move.  Why doesn’t he move?” talking to a small but welcome audience of intrigued children.  So this one is for you, parents.  It is a plea to look at your miniature reflections, who give us every opportunity to reflect upon ourselves. 

There are trolls among you, the term quite aptly given to one of Dillan’s favourite movies Trolls, incidentally not Disney but DreamWorks production.  I see children like Dillan being the trolls here, very happy with their own little worlds and beings, loving hug times and sing time and generally wanting to make everyone around them this bit more smily, this little bit happier and bringing colour and joy to this old grey world;.  And then there are the ‘Burgens’ – miserable souls who have been led to believe that the only way to be happy is to destroy (or to remain faithfully accurate to the movie to eat) a troll. 

The only thing that is making my Dillan and children like him seem different to you is because they are less conventional.  They are not maliable like little Burgens are.  They are round pegs that society is desperately trying to squeeze into the square holes already prepared.  So why not get rid of these children altogether, spare themselves the hassle, the expense, the time. Square pegs are invisible, they move when asked, can be taught to stay quiet, be less different.  They do not need ramps or toilets with changing facilities.  They do not need personal assistants or care plans.

But you as square pegs could easily rotate to make the holes round.  When you think about it the needs are not exorbitant and the things our children need are actually the same as any other child: equal opportunities and respect, and then there would be space for everyone.  Community would be inclusive and no parent would have to stand back and watch their two hour old baby being insulted or bullied and their future painted with doom and gloom.  Then you will see and show your children, that we are much more similar than different, because after all: your true colours (those true to who you really are), not those dictated by societal norms and perceptions, are beautiful for sure! 


Submit a Comment

Your email address will not be published. Required fields are marked *