What’s it really like raising a child with Down Syndrome

“…But I’m happy to see that, besides the physical and mental stress for all involved, there seems to be not much different when raising a child [with Down Syndrome], when it comes to the usual daily challenges, hurdles and joys of life…”

Every now and then, something happens, that makes one aware things aren’t always as they seem.  This email was very positive and the lady got heaps from visiting this Down Syndrome focused material here, but, that sentence … well, it’s sort of, a difficult one to fathom, and makes me think, hmmm, people don’t really understand the physcial and mental stress involved.

So, what’s it really like, raising a child with Down Syndrome?

Not easy.  In fact, it’s often quite hard.

What really bought it home to me, was when Jacob was home sick.  All I had to do was get my daughter up and to school.  Doesn’t even need me to do anything but wake her – twice!  Jacob, though, at 8 years, requires constant prodding to get ready, and easly chews up 15 extra minutes of a morning when he’s going to school.

As well, my daughter walks into school, whereas Jacob has to be accompanied, burning another 20 minutes of a morning.  Like wise, at home time, I have to be there on time, often a little early and walk him back tot he van – another 20 minutes gone.

Homework is more parent intense, toileting more intense.  Often more washing and folding.  More time checking his school bag …

On the home work, like forever, once he decides he doesn’t want to do it, it becomes almost impossible, with some home work being missed – he very much gets the idea – Did that at School, don’t do it here, at home.  Always been a bit like that.  Home he sees as a veg out area, after a hard day of learning.

Going to the beach, someone has to be watching him and walking with him the entire time.

So, when you amplify this up to a whole day, you can see how the time becomes so quickly lost.

So, yes, raising a child with Down Syndrome, although a very loving and caring involvement, is still very hard, particularly if you want to keep a life of your own as well.

The Surprises of a raising a child with Down Syndrome

Jacob is one difficult chap to work out at times.  Obviously his poor speach is playing a part, but there are times when he positively surprises me.

Like this morning, he drew on a box, took it into the kitchen table, got his mum to look at the picture, got the praise, then got her to look into a hole in the box near his picture, which she tried to but couldn’t because it was too dark, but in the box he had put a toy spider to surprise her.  That’s quite a bit of thinking there.

When you watch him on a computer, like most kids, he’s taken too it very well.  The big surprise is watching him move through the levels of a game – he can play Serious Sam, Oblivion and Shrek like a professional.  He moves rapidly, jumps, fires, attacks, dodges, all at lightening speed.   Watching him, you wouldn’t know he had Down Syndrome – except when he reaches a point that he cant work out, then it’s sometimes a bit of a temper.

On another occassion, he got frustrated with his carer not being able to put the jigsaw together, so as soon as the carer put the piece down amongst the others, he immediately picked it up and placed it into it’s correct position.   This wasn’t a put on – a complex jigsaw and the carer really couldn’t see where the piece went.

The things he likes to do are very age appropriate – even his choice in cartoons and movies are age appropriate and of his own chosing.

Raising Children with Down Syndrome in Conclusion.

OK.  This page was to give you an idea of what a day is like with my son, who also has Down Syndrome.  Yes, children with Down Syndrome may be slower, but don’t fall into the trap of thinking that a lower than average IQ means that someone is dumb or that they will never be able to do things.

Keep your expectations high, treat em with kindness and respect, and they should be able to fit into society quite well.

Incidentally, there is a strong argument, little understood, that takes the position that people with DS may not have low IQ’s – that what we see  is the summation of expectation coupled with physical disability.

As time progresses we are becoming more aware that the physical disability side of things is alot more unseen than people realised – eye sight and hearing problems for example.

Jacob was talking real early in life, before age expectation, but something happened, a neuron breakdown, a hormone, … and his language is now very delayed and incomprehensible for much of the time, but he’s getting there, but it’s a slow, laborious fight.

I still don’t know exactly what Down Syndrome is, but my hunt continues for it’s solution.